Notes on Jentri’s Big List of Indicators

Below are my notes on specific indicators from the post “Jentri’s Big List of Indicators, with Links.” They include my own experiences and observations and items I remember from the literature that I have no citation or outside link for. Therefore, everything in this post should be considered anecdotal. The big list also has links to outside sources, the verity of which must be assessed by the user.

Cold hands and feet in a warm environment: I have perpetually cold hands and feet, but it is hard to say how much of that is a Lyme indicator because I’ve always had cold hands and feet, even in warm environments. However, I believe it possible that this has gotten worse over the years. Like many chronic Lyme symptoms that go on for years, there is no way to tell if this would have been any different had I not had chronic Lyme.

Ringing or buzzing in the ears (tinnatis): This is one of my longest standing and earliest untreated symptoms, as well as one of the most frequent I have heard from other Lyme patients. When I first began to notice it, I ascribed it to the fact that I had recently begun playing music with a rock band. I figured it was the new increased time around turned up amps. However, there was no correlation between rehearsals and the ringing ears, no increase during or immediately after rehearsals. The ringing would appear in perfectly quiet times related to nothing whatsoever, as far as I could tell.

Lyme symptoms being intermittent, I could go for months without experiencing this symptom, then have it off and on for months. Gradually, over the years the frequency of periods increased and they got closer and closer together. I complained often to doctors, but none had any suggestions for alleviating it. Sometime during my Lyme treatment, I also developed clicks in one ear, again related to nothing obvious. The ringing now occurs each and every day, comes and goes, is more likely to occur in the afternoon or evening or when I’m physically or mentally tired. The clicks have disappeared for the last few years. The ringing is bad enough that it interferes with my hearing in a crowded room or watching something with problematical audio on television, such as old movies or shows on BBC with actors speaking rapid British. No one has ever been able to help me with it, though I confess I have never tried any of the homeopathic remedies because I just can’t make myself believe in homoeopathy. For television watching, I do use excellent wireless headphones and that helps some.

Sound sensitivity: It seems counter-intuitive to speak of both hearing loss and sound sensitivity in the same person, but when I had my hearing tested and was denied a hearing aid prescription for MediCare, the audiologist explained to me that the two things can go together. She was not speaking specifically of either due to Lyme disease. My sound sensitivity is so severe that when maintenance comes to my apartment for its annual inspection, I insist on being warned when they are going to test the smoke detector so that I can leave the apartment for a few minutes. If I set off the detector by burning a pot, I cannot bear to press the reset button and hear it go off. I made a special appeal on the basis of being disabled to have a smoke detector with a battery guaranteed for 10 years so I will never hear the chirping the regular ones made when the battery was getting low (especially since they did it in the middle of the night and there was no way to turn them off.)

My sound sensitivity for certain sounds is so severe that I had the horn on my mobility scooter disconnected as well as all alarm beeps because the high pitched sound of both were unbearable.  I don’t know when this symptom first appeared, but it was sometime before I was diagnosed. I watch television with my remote in my hand so that I can immediately hit the mute button if an unbearable sound–loud, high, horror movie screams, repetitive–should occur. I have found nothing that can be done about it but to try to control my environment so that I hear upsetting sounds as infrequently as possible.

Sudden sound may cause falling or retching: see “sound sensitivity.” I have never actually fallen or retched in response to sounds, but I am what other people have called extremely jittery. At one job, I annoyed my boss by rearranging my office so that my back would not be to the door–not so that he could not creep up behind me and stealthily see what I was doing on my computer (his accusation), but so that no one could creep up behind me and make a sound that would cause me to jump. You can see how Lyme disease might make you look strange enough on your job that you might get fired, as I eventually did. Just a normal knock on my door will startle me unpleasantly, which is why I have a sign on my door that says, “Don’t knock if you don’t know me. If you know me, you know you should have called first. Never knock or call after 3pm.” People call me, I’m expecting them, I’m watching for them so that I won’t have to hear a sudden door knock.

Sudden sounds will cause a wave of nausea and heart pounding out of all proportion to what a normal person experiences. I have no difficulty at all believing that other Lyme patients could fall or retch in response to sudden sounds or that I could in the future.

Ear pain:   About a year or two after what I know believe was my first infection, I experienced severe internal ear pain in one ear. There were no other symptoms I was aware of at the time, no congestion, nothing suggesting an ear or respiratory infection. It was just plain agonizing pain. I took over the counter pain medication for several hours (can’t remember what) but it had no affect at all on the pain. My husband took me to the emergency room of the hospital in the town where we were visiting, but the staff could find nothing that would explain the pain and treated me as if I were faking pain in order to get drugs–an experience I had several times after that and one with which longterm Lymies are familiar. After a while, it went away. I now believe it was an early Lyme symptom (early for me, not early as in early-stage Lyme.) I have not experienced a similar pain since.

Unexplained weight gain:    Once I began attempting to diagnose myself and suspected Lyme disease, weight gain was major indicator for me. I have always been skinny to the point of emaciated, descended on one side from the kind of country people that get called “Stringbean” a lot, though genetically, my mother’s 5’2″ height cancelled out my father’s 6’2″ height. I ended up a half inch taller than the average American woman non-immigrant woman at that time (5’4.5″) but built like my string bean father. In college, I weighed, at the lowest point, 89 pounds. I was taking a full load and working half-time and eating badly. i was forced by bad health, among other things, to drop out, after which I went up to 95 pounds and stayed there until after my first pregnancy, when my weight settled at 100 pounds. After my second child, it went up to 110.

The great weight jump came after what I now believe was my third infected tick bite, though now that I know that any tick bite can bring on early symptoms in a person already infected, my only clue on that is that I got early symptoms and then a whole lot more late symptoms. At that exact point in time, i was leaving for graduate school in Pullman WA. When I started gaining weight beyond anything I had ever experienced before, I attributed it to being confined indoors over the winter because of snow and eating too much fast food because I was again taking a full load and working half-time. Since I was accustomed to being too skinny, I actually enjoyed gaining the first 10 or so extra pounds.

A second great weight jump was not so much fun. In 1994, I was hospitalized for 3 days with what was then diagnosed, by process of elimination, as Hepatitis A, but which I and my Lyme doctor are now certain was Lyme hepatitis, or Lyme imitating hepatitis or however one prefers to apply semantics to this scenario. When I came out, I had lost weight because I had been pretty much unable to eat for weeks, but now I craved fats and sweets and had zero experience in worrying about weight gain. I gained weight rapidly and by the time I was finally diagnosed in 2000, I weighed–its hard to believe it–152 pounds. It is impossible to say what role menopause played in the second round of weight gain. After treatment and 12 years of a rigorous diet and holistic living program, I now weigh 142 pounds, my weight seems to be stuck there, but I do believe that much fat has turned to muscle from doing aqua-aerobics–vigorously–three times a week.

To my own story i can add that many, many of the people who contact me for assistance experienced sudden and unexplained weight gain correlated with the appearance of or increase in other late-stage symptoms, after a known tick bite with rash perhaps years before.

Anxiety:     Amid the welter of neurological and mental symptoms that Lyme disease can cause, anxiety becomes almost too subtle to notice, or at least it was for me. If one already has psychological problems before the Lyme disease, the task of identifying new ones or increased ones after Lyme infection is that much more difficult. If one is a sociological wild card on top of that, and thus has numerous good reasons to be generally anxious, anxiety is not going to be the most useful of diagnostic signals. (See my paper “Facing the World With Lyme Disease.”) I had already seen a psychiatrist for six months when I got what I believe was my first dose of Lyme disease. I had been suffering from severe nightmares, insomnia and depression that I now believe can be attributed to PTSD from my scary childhood.

However, that being said, I can say that once I was diagnosed and treated for Lyme disease and that treatment began to separate out my Lyme symptoms into distinct categories, rather than just one big lump of misery, I did have one or two experiences I am willing to call anxiety attacks. During the period after I had diagnosed myself but had not yet found an LLMD and gotten officially diagnosed, I was seeing non-LLMDs for my bewildering array of complaints.  One of these prescribed Elavil for insomnia. A psychiatrist I saw briefly changed that prescription to Trazadone and a later doctor changed that to Ativan when the Trazadone was no longer working. All of these were prescribed in the lowest possible doses,  helped with the insomnia and, I believe, may have lowered the general level of  my anxiety–expressed mainly as hypervigilence and worrying.

I am still very prone to anxiety but am now able to recognize it and have developed strategies to deal with it other than medication beyond what I take for insomnia. I would describe it as an inability to stop worrying about things I can’t do anything about right at this moment. One of my strategies is to take some kind of action, any kind of action, against whatever I’m worrying about, if possible. I have no compunctions, for instance, about making repeated phone calls to get the information I need to help me stop worrying. You said next week? When, next week? I want the date and time and the phone number of the person to call if it doesn’t happen. I don’t care if you’d have to go ask your supervisor, or check with the whatever, please do it, I need the information.

Abnormal number of floaters:  Floaters are black dots or lines that you see when looking at a blank area, like a wall or the sky, that move with your eye. The are caused by the breakdown of the vitreous humor, the gooey part in the center of the eye. They can be caused by a number of things and I’m sure I had some as a child that later disappeared. They don’t hurt or especially interfere with eyesight, but they can be annoying.

When I read that an abnormal number of floaters could be a sign of Lyme disease, I had no reluctance to add that to my list because I had had an optometrist spontaneously remark to me, just before the serious collapse that inspired me to research Lyme disease, that I had an “unusual number of floaters,” more than she had “ever seen in a person my age.” She had no explanation for it and neither did I at that time. She looked young to me, it was hard to say how long her career had been, how many patients she had seen, how large was the sample to which she was comparing me. Searching for things unusual about me medically that were also characteristic of Lyme patients, I decided to pursue this one further.

The next time I saw an optometrist, maybe a year or two later, with my not having noticed any decrease in the floaters, I asked him if I had an unusual number. He said no, not for my age. I told him what the first one had said and he said she was wrong. He referred me to an ophthalmologist for blurry vision he could not account for and I asked both that doctor and his assistant, who did an intake exam. The assistant said yes, the ophthalmologist said no. There you have it. Not unsurprisingly for Lyme disease, the doctors disagree and I can find no reference that says at age X, Y number of floaters are normal, but I’m going to believe the first optometrist because I’m a social scientist and I trust my own ability to assess the motives and competence of humans I encounter. What else can I do?

Uveitis:   If I had uveitis, I was not aware of it at the time, though I experienced many eye symptoms, including swelling of the orbit, red and irritated eyes and floaters, from the time I believe I was first infected until the present. Many of these I attributed to hay fever, which I had already when first infected, unless I was infected still earlier. It is certain that my hay fever got much worse when I moved from Berkeley to the country and then much, much worse after I was infected for what I believe was the first time. How related the eye symptoms are to the hay fever is unclear, since after a certain point, my eyes were irritated whether it was hay fever season or not. What is certain is that many years after I moved back into urban settings, years after Lyme treatment, one of my optometrists commented that he could see healed uveitis scars in my eyes and that I do have both floaters and cataracts, which can be caused by uveitis, among other things.

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Jentri’s Big List of Indicators, with Links

POSSIBLE INDICATORS OF LYME DISEASE, EXHAUSTIVE LIST

compiled by Jentrl Anders, Ph.D.

[Note: All of the following can be caused by something else, which is one of the reasons Lyme disease is so difficult to diagnose. Some items are listed more than once, if they can be indexed under more than one heading. The reader is advised that it is an accumulation of these indicators, and their spread over a number of different body systems that raises the question of Lyme disease. Chronic Lyme symptoms can be intermittent, as well. If seemingly unrelated symptoms tend to flare up together, it logically raises the chances that they have a mutual cause, including Lyme disease. This list includes anything that was ever mentioned to me, even once, by doctors, Lyme patients or Lyme-educated lay persons in the literature on Lyme disease surveyed. It also includes my own observations of my own case. I was too sick to run down the primary source.

No attempt has been made to prioritize the items as to diagnostic importance. It was compiled in 2003 and not updated. It is therefore not at all up-to-date, since hundreds of articles have appeared in medical journals and elsewhere since Lyme was named. I have provided links to the sources if possible, but advise not purchasing anything except the Murray book, since much better books are now available. Pamela Weintraub, Cure Unknown: inside the Lyme Epidemic is the best single up to date source I would recommend to purchase. The list reflects some 20 different sources, both primary and secondary. Older sources were consulted less frequently on the assumption that the later data would be more accurate. Full links have not been provided to articles in medical journals, since accessing them requires money but some of them do have links to the abstracts. I read the full articles in the Humboldt State University Library.

System/symptom                                                Source

Brain:

seizures                                                                                            Reik, et al

Circulation:

cold hands and feet in warm environments                             Bleiweiss, Murray

Ears: (see also “sensations” for balance references)

middle ear infections                                                                    Murray

hearing loss                                                                                    V-F

tinnitus (ringing or buzzing)                                                      V-F, Burrascano, Logogian

sound sensitivity                                                                           Neilds, Burrascano

sudden sound causes falling or retching                                  Nields

pain                                                                                                  Lymenet

Eating:

anorexia-like behavior                                                                 Paschner/Steere

unexplained weight loss                                                               Murray

unexplained weight gain                                                              Burrascano

difficulty chewing                                                                           Lymenet

cravings                                                                                            Murray

Emotional:

anxious                                                                                             Bleiweiss

agitation, restlessness                                                                   Paschner/Steere,Bleiweiss,V-F

mood swings                                                                                   Murray, Fallon, Burrascano

loss of:

……….initiative                                                                              Bleiweiss

……….creativity                                                                             Anders

……….desire to start projects                                                     Bleiweiss

………..desire to engage in social interaction                         Bleiweiss

depression                                                                              Bleiweiss,Fallon,Krupp,Burrascano

……….alternates w/anxiety                                                         Bleiweiss

……….not accompanied by low self-esteem, despair, hopeless      Krupp

euphoria                                                                                     Kollikawski

baseline irritability                              Bleiweiss, Fallon,Paschner,Murray,V-F,Burrascano

………..super critical                                                                         Bleiweiss

………..impatient with self and others                                          Bleiweiss

………..low exasperation threshhold                                            Bleiweiss

…………explosive at end of work period                                      Bleiweiss

…………trouble at work                                                                    Nields

…………rage, anger                                                                           Bleiweiss,V-F

………….volcanic rage                                                                      Bleiweiss

…………..verbal aggressiveness                                                      V-F

…………..child abuse                                                                         Nields

social withdrawal                                                                            Paschner/Steere

physical symptoms may have social triggers                            Bleiweiss

emotional lability/bursts of crying, affective instability    Ackerman, V -F, Nields

Eyes:

conjunctivitis                                                                      Bleiweiss,  Murray,Fallon

ocular myalgia (eye pain)                                                     Bleiweiss

swelling around eye orbit                                                    Bleiweiss

blindness (total or partial)                                                  Steere, V-F

photophobia/Iight sensitivity                                   Nields, Murray, Bleiweiss,V-F, Fallon

“idiosyncratic responses to light,” esp.flourescent       Nields

swollen, red eyes                                                                          Murray

pinkeye                                                                                          V-F

inflammation, any part                                                              V-F

double or blurry vision                                                              V-F, Burrascano

involuntary squint                                                                      V-F

pain                                                                                               V-F

decreased perception of light or color                                   V-F

drooping eyelid                                                                          V-F

abnormal number of floaters                                                  V-F, Burrascano

lazy eye                                                                                        V-F

iritis                                                                                             Fallon

uveitis, uveitis                                                                           Fallon

optic neuritis                                                                            Fallon

optic atrophy                                                                           Fallon

Environmental factors:

insect bites, increased sensitivity to                                   Murray

symptom recurrence or increase due to:

…………new tick bite                                                              Murray

………….physical stress                                                          Murray

………….emotional stress                                                      Murray

…………..sleep deprivation                                                     Murray

…………..exercise                                                                       Murray

…………..hot tub                                                                        Bleiweiss

……………booze                                                                         Bleiweiss

……………fasting                                                                       Murray

……………dehydration                                                             Murray

…………….humidity                                                                 Murray

…………….low barometric pressure                                     Murray

…………….cold or rain                                                            Murray

…………….falling barometric pressure                               Anders

…………….high winds                                                            Anders

allergies make symptoms worse                                       Bleiweiss

abhorrence of extremes of temp                                       Bleiweiss

chemical hypersensitivity                                                  Bleiweiss

sensitivity to synthetic fabrics                                          Murray

decreased conscious awareness of environment          Sorwell

Face:

cranial nerve problems                                                      Ackerman

facial tics, eyelid twitch                                                      Murray

Fatigue:                                                                            Nields, Bleiweiss

exercise precipitates flareup following day                    Bleiweiss

alternates with insomnia                                                   Murray

Fever:

low grade to 104.5, esp. 1st wk; routinely low temp   Bleiweiss

recurrent, no explanation; chills                                    Murray

General LD:

symptoms are intermittent, fluctuating, cyclical, as well as related to environmental factors and stress                                                              Nields, Burrascano,Bleiweiss

insomnia                                                                             V-F, Murray, Bleiweiss

Gl:

nausea                                                                                  Murray, Bleiweiss,Fallon

vomiting                                                                              Murray,Fallon

persistent vomiting                                                           V-F

diarhhea                                                                              Murray

acid reflux                                                                            V-F

upset stomach                                                                    Burrascano

abdominal cramps                                                            Lymenet

irritable bowel syndrome (LD can cause it)                  Sowell

Heart:

palpitations                                                                           V-F

cardiac infection (myocarditis, periocarditis)               V~F, Lymenet

slowed heart rate                                                                 V-F

shortness of breath                                                             V-F

chest discomfort                                                                 V-F

history of murmur                                                             Burrascano

history of prolapse                                                            Burrascano

heart arrhythmia                                                               Murray

enlarged heart                                                                   Lymenet

ECG shows non-specific ST and T-wave changes      McKay

Immune system:

recurrent upper respiratory infections                         Bleiweiss

predilection to cancer                                                       Bleiweiss

traumas heal slowly                                                          Bleiweiss

reactivates viral infections, esp herpes                         Burrascano

J-H reactions to antibiotics                                             Burrascano

Joints:

large joints swollen                                                            V-F, Fallon

swollen knee                                                                        Murray

painful                                                                                  V-F

pain one side more than other                                        V-F, Kaell

pain intermittent or cyclical                                             V-F

warm                                                                                     V-F

elbow won’t straighten w/o pain                                   Murray

crack and snap                                                                   Murray

jaw pain, crepitis (crunchy)                                            Murray, Kaell

appears earlier in disease than rheumatoid arthritis              Kaell

bony bumps on, esp. elbow                                               Kaell

elbow, knees, fingers                                                           V-F

Lab:

high levels of vasoconstricting hormones                                Bleiweiss

low magnesium/potassium                                                        Bleiweiss

chronic high sedimentation rate                                               Murray

high CPK levels= inflamed or wasting muscles                     Spotlight,11/ 99.p.18

Mental:

forgetful                                                                                        Bleiweiss,Murray

where things are                                                                     Bleiweiss

what going to say                                                                  Bleiweiss

why came into room                                                             Bleiweiss

previous sentence                                                                 Bleiweiss

plot content, rereading                                                        Bleiweiss

names                                                                                     Bleiweiss

bypass exits                                                                           Bleiweiss

short term memory loss in general                                 V-F

hard to concentrate                                                                Bleiweiss,Murray,VF

easily confused                                                                        Bleiweiss, V-F,Burrascano

can’t understand road signs                                             Bleiweiss

can’t understand technological manuals                        Anders

can’t think                                                                            V-F

can’t apply logic                                                                 V-F

inattention                                                                              Bleiweiss

decreased awareness of environment                          Sowell

(can be mistaken for attention deficit disorder in children)

disorientation in intellectual tasks                                   Bleiweiss

paper shuffling                                                                Bleiweiss

misplace things wierdly                                                  Bleiweiss

disoriented in general                                                         V-F

spelling deterioration                                                         Bleiweiss

math deterioration                                                              Bleiweiss

writing deterioration                                                          Bleiweiss

too much detail                                                               Bleiweiss

word reversals (wrong word,seems right)                Bleiweiss

letter reversals                                                               Nields

illogical/incoherent/no train of thought                  Bleiweiss

cryptic                                                                               Bleiweiss

overly inclusive                                                               Bleiweiss

circumstantial                                                                 Bleiweiss

in general                                                                       Burrascano

Iearning deterioration                                                     Bleiweiss, Paschner,V-F

seems like too much info                                            Bleiweiss

too much info=fatigue, frustration                          Bleiweiss

developmental delay (children)                                Sowell

topographic disorientation                                            Bleiweiss, Nields

get lost a lot                                                                   Burrascano

go to wrong place                                                        Burrascano

bump into things a lot                                                Nields, Fallon

drop things a lot, more one side than other           Nields, Fallon

place objects on edge of table                                    Nields, Fallon

knock over objects when reaching for them            Nields, Fallon

stumble on curbs and steps, didn’t raise foot high enuf                Anders

turn the wrong way when exiting buildings a lot                              Anders

“spatial dyslexia”                                                                    Lymies, newsletters

turn on wrong faucet                                                         Lymies

tum switches, jar lids, thermostats wrong way            Lymies

miss a step going up or down stairs                               Bleiweiss

altered consciousness                                                           Ackerman

speech problems                                                                Burrascano

can’t find right word                                                         Fallon,Murray

incoherent speech                                                             Kollikawski

stutter                                                                                 Bleiweiss

get your tongue tangled a lot                                          Anders

Mlsc:

swollen glands                                                                   Murray, Burrascano

sore throat                                                                         V-F, Burrascano

difficulty swallowing                                                      V-F

symptoms worse in afternoon                                      Murray

ridged and pitted fingemails                                        Murray, Doherty

white spots on nails                                                       Doherty

roof of mouth tender                                                    Murray

epithelial ulcers, roof of mouth                                  Lymies, newsletters

red sores edge of tongue, gums                                  Lymies, newsletters

“unexpected spates of muscle cramps, sprains;

tendonitis, bone or it pain at sites of load bearing”                BleiWeiss

high cholesteral characteristic of late stage                Burrascano

more unfavorable HDL/LDL ratio in late                    Burrascano

inflammation abdominal wall muscles                        Bleiweiss

persistant dry cough                                                         Murray

vocal cord spasm/weak or hoarse voice                       V-F

night sweats                                                                      Murray

profuse sweating                                                             V-F

abnormal tissue growth                                                V-F

diminished reflexes                                                       V-F

exagerrated reflexes                                                      Bleiweiss

startle reflex (ie, you scare easy)                                Burrascano

exagerrated hangovers from alcohol                        Burrascano

rising cholesteral                                                          Burrascano

abnormal results on nerve conduction tests           Nields

headaches, mild to severe                                            Fallon, Murray

Movement:

myclanic jerking, limbs or trunk                                Bleiweiss,V-F

facial twitch                                                                    Burrascano

body twitch when falling asleep                                 Murray

clumsiness                                                                      Bleiweiss

prone to musculoskeletal injuries                              Bleiweiss

frequent falling                                                              Sowell

drop things a lot                                                           V-F, Fallon, Nields

sloppy handwriting                                                     Bleiweiss

partial leg paralysis                                                    Ackerman

limb paralysis                                                             Murray, V-F

facial palsy                                                                   V-F

lower motor neuron weakness                                Fallon

abnormal movement arms or legs                         V-F

disrupted function upper back/ neck                    V-F

tremor                                                                          Burrascano

whole body stiffness in morning                             Lymies, newsletters

Muscles:

loss of tone                                                                   V-F

lack of muscle coordination                                      Ackerman,V-F

gait problems                                                              V-F

cramps                                                                         V-F, Burrascano

pain                                                                              Burrascano

tenderness                                                                 Sowell

swelling                                                                      Sowell

lab work shows high CPK= levels inflamed or wasting muscles      Lymies, Spotlight

Pain:

musculo-skeletal, changes areas (migratory pain)         Fallon

ear                                                                             Lymenet

headache                                                                  Fallon

mimic migraine                                                  Bleiweiss

mimic muscle tension                                      Bleiweiss

cervical/radicular                                             Bleiweiss, Fallon

arthralgia (joint pain)                                         Bleiweiss

bone pain                                                              Bleiweiss

chest pain                                                             Bleiweiss,Murray

back pain

middle                                                              Murray

low back ache                                                 Bleiweiss, Murray

sacroilitis                                                        Bleiweiss

paravertebral lumbo/sacral muscle spasms                  Bleiweiss

herniated discs (LD can cause)                   Bleiweiss

can’t straighten back after bending             Murray

spasms                                                              V-F

feet:

cramps                                                                  Murray

heel                                                                      Murray

top of foot                                                          Murray

instep                                                                 Anders

neck and shoulders stiff                                Murray

can’t rotate or tilt head                             V-F

ribs                                                                    Murray, Burrascano

front of neck                                                   Murray

palpatory tenderness, tibia shaft, periostitis            Bleiweiss

sore throat                                                      Murray

shooting pains, muscles                               Murray, V-F

buttocks, legs                                                  Murray

fingers                                                              Murray

“sausage digits,” swollen, blue, stiff, extreme pain typical of psoriatic arthritis, which LD mimics                                                           Anders, Kaell

hips                                                                  Murray

face                                                                   V-F

scalp                                                                 V-F

forehead                                                          V-F

temple                                                             V-F

eye                                                                   V-F

teeth                                                               V-F

testicular or pelvic                                        Burrascano

Personality:

generally pessimistic                                Bleiweiss

morbid fear of hidden illness                 Bleiweiss

maudlin, overly sentimental                  Bleiweiss

prone to “fatal attractions”                    Bleiweiss

imagined conspiracies                            Bleiweiss

perception of being in a hurry. no deadline                   Bleiweiss

inability to be calm                                  Bleiweiss

agoraphobia                                              Bleiweiss

claustrophobia                                         Bieiweiss

gives impression of erratic                    Bleiweiss

gives impression of inappropriate           Bleiweiss

neglect of appearance/hygiene              Reik, et al

changes in general                                     Paschner/Steere/V-F

phlegmatic                                                  Bleiweiss

sullen                                                            Bleiweiss

distracted                                                    Bleiweiss

hyperkinetic                                               Bleiweiss

misbehavior (children)                           V-F

Psychiatric:

profound fatigue                                      Murray, V-F

insomnia                                                   Murray, V-F

panic attacks                                           V-.F

halluoinations

auditory                                              Paschner, et al

olfactory                                              Reik, et al

inappropriate laughter                           Fallon

inappropriate behavior                          V-F

violent outbursts                                    Fallon,V-F

manic/depressive behavior                 V-F

loss of contact w/reality                      V~F

feeling of depersonalization               Fallon

feeling of loss of control                        Fallon

paranoia                                                 V-F

schizophrenic-like states                    V-F

dementia                                                 V-F

psychosis                                               V-F

suicidal thoughts                                Fallon,V-F

Reproductive:

abnormal vaginal bleeding                  Murray

symptoms worse with periods             Murray, Beiweiss

impaired fertility                                    Bleiweiss

loss of libido                                           Nields, Bleiweiss

heightened PMS                                     Bleiweiss

unexplained menstrual irregularity          Burrascano

unexplained milk production or breast pain            Burrascano

unusual pregnancy

miscarriage,stillbirth                             Lymenet

premature birth                                      Lymenet

birth defect                                              Lymenet

Respiratory:

wheeze                                                          Murray

recurrent upper respiratory infections                    Bleiweiss

shortness of breath                                       V-F

persistent cough (unproductive)               Burrascano

asthma                                                             Lymenet

pneumonia                                                     Lymenet

can worsen existing conditions                  Bleiweiss

sinusitis, asthma, bronchitis, allergies          Bleiweiss

Sensations:

profound fatigue                                           V-F, Fallon

diminished exercise tolerance                   V-F

lowered stamina                                             Burrascano

numbness or tingling:

central face, scalp, fingertips, extremities                Bleiweiss

in general                                                                        Murray, V-F, Burrascano

spastic paraparesis                                            Fallon

burning or prickling anywhere                        Lymenet

areas if heightened sensitivity                         V-F

electric shock sensation/pain                           Bleiweiss

dizziness                                                               Bleiweiss,Burrascano

lightheadedness                                                   Burrascano

imbalance                                                              Bleiweiss,Murray,Burrascano

vertigo                                                                   Bleiweiss

motion sickness                                                  Bleiweiss,Burrascano

abnormal smell                                                   Nields

abnormal taste                                                     Nields, V-F

loss of taste                                                      V-F

sensitivity to vibrations                                    Nields

feel vibrations when no source for them           Anders

increased drug sensitivity                                   Murray

jitters                                                                      Murray

sensory loss in general                                        Fallon

Skin:

erythema migrans rash (w/ or w/o tick)            V-F

purple lumps, esp earlobe                                    V-F

mimics eczema                                                       Bleiwiess

mimics psoriasis                                                     Bleiweiss,Murray

mimics hives                                                             Lymenet

mimics sunburn                                                       Lymenet

mimics poison ivy (and, presumably, oak)        Lymenet

mimics flea bites                                                     Lymenet

mimics pityriasis rosea (but is spongiotic dermatitis)             Duray

odd sensations on skin                                           Bleiweiss,Murray

crawly, buggy feeling                                           Lymies, newsletters

tender                                                                      Bleiweiss

itchy                                                                         Bleiweiss

flushing                                                                      Bleiweiss, Burrascano

excess sweating or none                                         Bleiweiss

increased sensitivity to fabrics, esp synthetic         Murray

cankers/cold sores                                                   Murray

red sores, edge of tongue or gums                         Murray

small round painless sores that scab over, leave a mark resembling a vaccination scar         Murray

epithelial ulcers, roof of mouth                               Anders

blood spots under skin, esp after heat                   Murray

scalp tender or itchy                                                 Murray

unexplained hair loss                                               Burrascano

round black and blue spots, similar to bruises but don’t hurt when touched       Murray

easy bruising                                                                       Prehn

fingernails have tiny pits between vertical ridges            Doherty

abnormally accelerated age/liver spots on hands             Doherty

unusual growths (Borrelial Iymphocytoma) on ear lobes, axillary skin folds and nipples Duray

Sleep:

vivid nightmares                                                          Bleiweiss,Murray

disturbance (incl subtle)                                             Fallon

excessive daytime sleepiness                                      Fallon

inappropriate hypersomnolence                              Bleiweiss, Burrascano

insomnia in general                                                      Murray, V-F

insomnia at bedtime                                              Bleiweiss

early awakening                                                     Burrascano

loss of dreams                                                            Murray

Syndromes, conditions, diseases imitated:

arthritis                                                                        Bleiweiss

asthma                                                                         Lymenet

attention deficit disorder (children)                      Sowell

pneumonia                                                                 Lymenet

hepatitis                                                                      Bleiweiss

jaundice                                                                   Murray

elevated liver enzymes                                        Lymenet

responds to antibiotics (most hep is virus caused)              Bleiweiss

fibrocystic breast disease                                          Bleiweiss

cysts in general                                                            Blieweiss

urinary infections:                                                      Blieweiss, Ackerman

hesitancy                                                                 Bleiweiss

frequency                                                                Bleiweiss

incontinence                                                          Bleiweiss

bladder- or kidney dysfunction                         V-F

Irritable bowel syndrome                                          Bleiweiss

periostitis of ribs (inflammation of sheath covering bone)                 Bleiweiss

tendonitis  (incl tennis elbow)                                  Blelweiss

sternoclavicular/costochondral arthritis               Bleiweiss

esophagitis                                                                    Bleiweiss

acid reflux                                                                      Bieiwaiss

gastritis                                                                          Bleiweiss,V-F

MS                                                                                   Logigian, Halperin

ALS                                                                                Logigian, Halperin

Guillian-Barre                                                             Clavelous (Europe)

dementia/Alzheimers                                                MacDonald

stroke                                                                             Kohler

laryngitis                                                                       Murray

fibromyalgia                                                                 Fallon

LD can trigger it                                                        Kaell, Barbour

meningitis                                                                     Lymenet

lupus                                                                              Murray

chronic fatigue syndrome (LD may trigger it)           Krupp, Coyle, Barbour

gout                                                                                Kaell

herniated disc                                                               Stiernstedt

LIST OF REFERENCES CITED

Ackerman, R., MD. et al, Chronic Lyme Disease, Annual Report New York Academy of Sciences 539:16. 1988.

Anders, Jentri, Ph.D., personal observation of own case.

Barbour, Alan G., MD. Lyme Disease: the cause, the cure, the controversy. Johns Hopkins University Press.

Bleiweiss, John, M.D., When to Suspect Lyme, online http://www.cassia.org/essay.htm

Burrascano, Joseph, MD. The New Lyme Disease: Diagnostic Hints and Treatment Guidelines for Tick Borne Illnesses, Oct. 1998 and Advanced Topics in Lyme Disease, May, 2000. LymeNet online library.

Coyle, P.K., M.D., Antigen Detection and Cerebrospinal Fluid Studies, in Coyle, Lyme Disease, p. 136.

Doherty, Art (a longterm Lymie who actively researches). Information obtained online from a site no longer available.

Duray, Paul H. M.D., Histopathology of Human Borreliosis in Patricia K. Coyle, Lyme Disease,  p. 49.

Fallon, B.A., MD. et al. The Neuropsychiatric Manifestations of Lyme Borreliosis, Psychiatric Quarterly, Vol. 63, No 1, Spring, 1992. Online, LymeNet on-Iine library.

Grier, Tom. Lyme Disease Survival Manual. Online http://www.lymealliance.org.

Halperin, J.J., MD. et al. Nervous System Abnormalities in Lyme Disease. Annals of the New York Academy of Science 539:24-34, 1988.

Kaell, Alan T., M.D. Rheumatic Manifestations, in Patricia K. Coyle, Lyme Disease, 1993.

Krupp, Lauren B. M.D., et al. Fatigue in Patricia K. Coyle, M.D., Lyme Disease.

            Cognitive Function in Late Lyme Borreliosis. Archives of Neurology 48:1125-1 129, 1991.

Logigian, E.L., M.D. Chronic Neurological Manifestations in Lyme Disease, New England Journal of Medicine 323: 1438-1444, 1990.

LymeNet. LymeNet Guide to Lyme Disease. LymeNet online library.

Lymies. Either personal communication from a Lyme victim or a personal account of a Lyme victim published in a Lyme newsletter. NOTE: This information is what scientists call anecdotal, i.e., not established through formal scientific research, but it is not necessarily untrue for that reason. The scientific method begins with observation. Lyme research began only because of the careful observations made by a mother only partially trained in scientific research. Much scientific research begins that way. I justify the inclusion of this material, as well as my own observations, on the grounds that Lymies have suffered greatly from the tendency of the medical establishment to dismiss anything a Lymie experienced  that has not been written down somewhere by a credentialed scientist. Available information and research has been so skewed by conflicts of interest and academic tush covering that Lymies are well advised to consider the observations of other Lymies in trying to escape the hell that is misdiagnosis or no diagnosis.

McKay, LaNeIle. Lyme Disease: presentation, diagnosis and treatment, Physician Assistant, June 1998, 28:6, p. 27(12)

Murray, Polly. (with another mother, she was the first to report LD symptoms; she is often called “the mother of Lyme Disease”) The Widening Circle: A Lyme disease pioneer tells her story. 1998.

Nields, J.A., MD. Tullio phenomenon and seronegative Lyme Disease (letter). Lancet 338:128-9, 1991.

Reik, L., M.D., et al, Demyelinating Encephalopathy in Lyme Disease. Neurology 352267, 1985.

et al. Neurologic Abnormalities in Lyme Disease, Medicine, vol.58:281-94, 1979.

Paschner, Andrew, M. D. and Alan Steere, M. D. Tertiary Lyme Disease, Proceedings of the 2nd International Symposium on Lyme Disease, Vienna, Sept. 1985, p.38.

                     The Triad of Lyme Disease…, Neurology 35:47, 1985.

Sindic, C. J. M., et al. Meningoradiculitis and Bb, Lancet July 20, 1985, p. 14

Sowell, Michael K. , M.D. Nervous System Manifestations of Lyme Disease in Children, Spotlight on Lyme (Lyme Alliance newsletter), 11/12, 1999, p. 7.

Stiemstedt, G.T. et al, 3rd International Conference on Lyme Disease on Lyme Borreliosis, quoted in Murray, p. 242.

Vanderhoof-Forschner, Karen, Everything You Need to Know About Lyme Disease, 1999. (Abbreviated V-F on the list.)

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Rashes

Classic Lyme Rash

(From the website of the Canadian Lyme Disease Foundation:             http://canlyme.com/lyme-basics/symptoms/classic-lyme-rash/)

An “Erythema Migrans” skin rash is more often incorrectly referred to as the “bull’s eye” rash. Current research has shown that only a small subset of the strains/species of bacteria that cause Lyme disease will cause a rash of any kind.  Of the few that do cause a rash only 9% of those will take the over-emphasized ‘bull’s eye’ form. The vast majority will get no rash and those that do most rashes are more generalized in appearance.

It is important to compare your rash with other known skin rashes that are not Lyme related. ie. ringworm (Tinea), a fungal infection that your physician should test for by scraping a little material off the rash area and having it tested for the fungus. Ringworm can be treated with anti-fungal creams.

Many doctors tell patients that what they have is a spider bite … the only spider bites that leave rashes that may be confused with Lyme disease will very quickly (within hours) become extremely painful, unlike a Lyme disease rash.

Overall a rash of any kind from Lyme disease occurs or is recalled in only 30% + cases so no evidence or recall of a rash does NOT mean no Lyme Disease to the clinician. It is not always a bull’s eye and can be generalized in appearance.

A Lyme disease rash is not always at the site of the tick bite. Many myths about the rash have resulted in misdiagnosis. One such myth is that the rash is usually the size of a quarter or silver dollar. The rash may vary greatly in both size and appearance. There may be more than one on the body (several at one time).

The most damaging myth is that all patients who have Lyme disease or at least the large majority get a rash of any kind. This has been proven to not be the case yet far too many physicians use this as the main diagnostic criteria rendering a negative diagnosis.

———————————————————————————————–

Pix of the Lyme rash you might get, if you are lucky enough to get a rash

Below are photos from the website of the Centers for Disease Control of variations on the EM rash that is an indicator of Lyme Disease. All of the CDC photos are shown below but I have provided the link so that CDC photos of rashes that are not Lyme can be viewed. I provide the photos here so that I can comment on them.

http://www.cdc.gov/lyme/signs_symptoms/rashes.html

cdc_em

Above is what might be called the classic rash. In the center is a bug bite. No tick is shown because this rash evolves and by the time it gets to this stage, the tick would be engorged and either fallen off on its own or been noticed and removed. In this photo, the bug bite part is just a bump, but it can be an open lesion in the middle of the bump. The absolutely crucial diagnostic of  Lyme EM rash is that it starts small and then expands, usually slowly but possibly rapidly. The average time, according to most sources, is 7 days after the bite for it to begin. Pink will appear to come out from under the red bug bite in the center, then expand into a pink circle, then clear between the outer edge and the center to form a ring. It may last a month or more, but with or without treatment, the rash itself will eventually disappear. This does not mean you’re cured. It means that you have Lyme disease.

This rash probably does not itch or burn and is not painful, unless it includes a lesion, which sometimes it does. It can be, however, very dramatic in appearance. There may be more than one ring. It may be triangular rather than round. It may be part-circle, part-something else. My largest one was a huge half-circle on the front of my thigh, from knee to groin, the edges meeting on the back of my thigh. If flattened out, it would have been a perfect half-circle. The upper half was stripes on my torso up to the bra line.

If the rash appears within hours of the tick bite, with or without other symptoms, it indicates that you already were infected with Lyme disease at some prior time, perhaps with no symptoms at all and no awareness even of a tick bite. Recent research indicates what was mentioned 30 years ago by Polly Murray, the “mother of Lyme disease” in her book The Widening Circle, is true. An infected person receiving another tick bite, may develop early Lyme symptoms overnight. It was unclear to me from Murray’s book when I read it, whether that had to be a tick carrying Lyme disease. What recent research shows is that it can be a bite from any tick, even an non-Lyme bearing species, that causes the symptoms because the Borrelia bacteria already in the person’s body are reacting to, becoming excited by, the tick saliva. This is a reason to not allow a non-Lyme doctor to dismiss you as a Lyme case because “the rash appeared too soon.”

Until recent years, this rash was the single symptom completely unique to Lyme disease and if you were lucky enough to get one, even the super cautious CDC would accept you as a Lyme case on the basis of the rash alone, not requiring a positive test. That policy changed officially for political reasons and the CDC now will only accept as an official case, one with positive tests. There was no scientific reason the stop using the rash as a unique diagnostic and it is rumored that individual doctors associated with the CDC will still say if you got this rash, you have Lyme disease.

However, the rash only looks “classic” some of the time. It may vary greatly depending on the body part involved and co-infections and possibly the strain of Borrelia. Some variations are shown below. In my case, my first EM rash was in my armpit and I only noticed it when I saw the edge expanding down my inner arm. There were no other symptoms at the time and Lyme disease had not yet been named or described, so I did not seek medical attention. My second EM rash, years later, was on the inner side of my breast and appeared within hours of my removing a tick from that area. The tick was tiny, not engorged, and not identifiable as to species, so it may not have even been a Lyme tick. Again, there were no other symptoms with the rash and I did not seek medical attention. I was not at that time, aware of Lyme disease, though it had by then been named and was being studied.

My third EM rash was from a tick bite in my groin. In this case, I damaged the tick removing it, the rash and symptoms appeared within a day. I was still not thinking about Lyme disease, but when red stripes began climbing up my lower torso, in conjunction with a circular rash expanding down my thigh, near-delirium, all-over body pain and extreme weakness, I feared blood poisoning and went to the doctor. I had not left the tick head in, but by the time I got to the doctor, I was remembering what I by now had heard about Lyme disease. My doctor insisted that I could not possibly have Lyme disease because the rash was “too big, not round enough and appeared too soon,” but he prescribed me not enough of the wrong antibiotic “just in case.”

It is now suggested by some researchers that a striped rash with a tick bite is an indication of Bartonella, a common co-infection of Lyme. I tested negative for Bartonella many years later when I finally went to a Lyme doctor, but he said that it was entirely possible that the antibiotics I got before I got to him could have killed off the Bartonella or that I had a strain that does not show up on the tests.

em_1_010728_bernard-cohen

Multiple circles that have not yet cleared. It is unclear to me if these are the result of one tick bite or several.

em_1_120205_yevgeniy-balagula

Bluish and pink rings around a bug bite. The size of this is unclear, but my Lyme doctor told me a Lyme rash is a minimum of 3″ in diameter. I have no idea what he was basing that on, but would reiterate that, regardless of size, or what the bite is doing, the important thing is did it start small, then expand. It does not always necessarily clear and make a definite ring, but if it does, probability goes up that it is a Lyme EM rash.

em_1_061106_taryn-holman

The ring without the center. The CDC does not explain what happened to the center, but I would suggest, from my reading of the literature, that this is either a secondary rash or that it is very late in the evolution of the rash and the bug bite has healed but the edge of the rash remains. That might happen if the person was not very allergic to the tick saliva and the tick was removed early on. Early removal does not necessarily mean there was no time to transmit the disease, since damaging the tick means instant transmission. A secondary rash is one that appears some time, perhaps a long time, after initial infection and looks like an EM rash without a tick bite.

em_2_070701_robin-stevenson

The rash can be bluish and only vaguely round. Here, the position on the body is probably distorting the ring. You can, however, see irregular concentric bands of different color. There is no red central bug bite, that appears to be a white area instead. If I saw a rash like this, I would really want to know if a tick was actually seen and/or removed from the white area and did it expand outward, before calling it an EM rash. It should be noted that the darker the skin, the bluer the shades of the rings. I have seen an expanding circle of near-black around a known tick bite on a mixed-race person about the shade of President Obama.

Photos from online, not CDC

Below are photos of rashes I downloaded from websites but did not note which websites I got them from.

rash 3

A triangular rash with no red “bug bite” in the center.

rash 2

EM rash with a lesion that has not yet started clearing in the center.

rash 1 iph

EM rash with a double center and no obvious bug bite. This could be a secondary rash or one from which the tick bite has already disappeared. Or, since the circle is not always centered around the bite, there is a dark area on the left that could be a disappearing tick bite.

rash 4

EM rash that is starting to clear and make a ring. The clearing may or may not start as a complete, evenly sized ring. It may start as a patch of whiter skin that grows into a ring. I believe the dark spot is not the tick or the bite, but a skin blemish. I think the bite was off-center, in the lower left quadrant. The outer ring is becoming visible everywhere but there.

Photos of my own rashes

Below, photos I have taken of some of the rashes I have had during the course of my own case. None of the below are the EM rash that is an early sign. They are all lesions or rashes that came much later. The rashes I get that I’m calling secondary rashes do not expand outward. The remain the size they were when they appeared. It is the clearing into a ring that suggests they are Lyme-related. The photos below were taken by me and have been somewhat enhanced in an attempt to compensate for the white areas caused by the camera flash bouncing off skin.

secondary rash 2

secondary rash

Above, two angles on a rash I get maybe once a year that I am assuming is a secondary Lyme rash. It starts out as an imperfectly round blue solid circle about the size of a quarter. It does not hurt or itch. I cannot feel it at all. Even though it looks like a bruise, it is not at all tender and I have no memory of injuring it. I do bruise easily and get many bruises that are slightly tender that I cannot remember doing anything that would have caused them. But, these are darker than those and always between dime-size and quarter-size. After a few days, a small white area appears in the center and begins to expand, ultimately leaving a ring, which then gradually disappears. This one is starting to disappear, which is why there is a gap in the ring.

jentri's 2ndry rash iph

An earlier photo of the secondary rash shown in the two preceding photos. The round bruise-like area is just beginning to clear in the center. These rashes always appear close to the joints that have been most painful. This is my right elbow, which has been so painful I’ve had to put my arm in a sling to avoid trying to straighten it, thereby causing excruciating pain. This photo was taken by a friend, so I was able to get my arm into a position where the flash did not cause an unnatural white area. It has not been enhanced. The color and contrast values are true to the original photo.

striped rash

This is a rash that I’ve only had a few times in 30 years. It does not hurt or itch, appeared overnight and lasted a day or two. It looks like I crashed through briars or scratched an itch too hard or was scratched by an animal. None of the above are true. As far as I can determine, nothing caused it. The only theory I have is that, since the common-name of Bartonella is “Cat-scratch fever” and I now know a striped EM rash is an indication of Bartonella, it is possible I still have a latent case or low-level case of Bartonella and every once in a while it causes a rash that looks like a cat-attack. There is no increase in other symptoms when I have had this rash.

vashti

This is the back of a friend’s right elbow, showing what I believe to be an EM rash with an off-center tick bite near the center of the upper edge. The area was actually more circular than the photo indicates because, again, the flash on my camera is bouncing off her skin, making a white area that obscures part of the circle. Though the total area was not very dark, the edge is distinct on the left side, near the bend of her elbow, and different shades of pink can be seen.

The dark spot in the center is not a tick. My friend never saw a tick, but felt a bite while visiting the Arcata Marsh in Humboldt County CA, an area that is crawling with deer ticks and in which many people, to my knowledge, have contracted Lyme disease. She awoke at 4 am the next day, scratching violently at this area and with a fever and aches. She got up, looked at the back of her arm with a mirror and noted how big the red circular area was. She did not see a tick, but did see the bite. She called me at 7 am, suspecting Lyme, and asked me to look at it. By that time it had expanded outward from the size it was at 4 am and my friend was feeling very sick. I went with her to the emergency room of the local hospital, where she was given a prescription for doxycyclene, only because we both insisted.

The rash continued to expand and did clear in the center and become a ring. It was never very dark, always shades of pink. It did not last very long. I went with her to our mutual doctor about 3 days after we went to the ER and the doctor claimed she could not see the rash, even though I could still see it, probably because I had seen it before and knew what I was looking for. My friend sometime later tested positive for Lyme disease by Igenex’s Lyme panel. (You can’t test until 6 weeks after the bite, because, if it is a new infection, the tests are not accurate until then. Doctors assume, in the case of testing, that it is a new case, not an old case in which a tick bite is causing rapid early symptoms.)

I believe what happened is that my friend, who had had many health problems consistent with Lyme disease for years, already had Lyme disease when a tick attached to her at the marsh. That tick may or may not have been a Lyme-bearing species, and if it was, may or may not have been carrying Borrelia. In reaction to tick saliva, the Borrelia already in her system produced an EM rash and flu-like symptoms much more rapidly than a new infection would have. She was allergic to the tick saliva (most people are not), so that the bite itched a lot and she scratched the tick out of her skin in her sleep, which is why she never saw it. It happens. What made me sure this was a Lyme rash, in addition to its expanding outward from a bug bite, was seeing it in the context of other information–the location where my friend got the bite, the flu-like symptoms and my knowledge that a rapid appearance of early symptoms is an indication that the person was already infected.

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Start Here–video

The first video is current as of April 10, 2015. It updates some of the material I present on this website and breaks the whole dismal picture down in bite size, logical facts presented with what I feel is the appropriate level of urgency. It comes from the makers of the feature length film “Under Our Skin,” which was nominated for an Academy Award, but didn’t get it.

https://m.youtube.com/watch?v=AegNMY0qWEk

Below, the film Under Our Skin. Its long and depressing, I could only watch it once. But it is full of information and pulls no punches.

 

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UC Davis tick study, rural northern California

Below is the complete text of an article by UC Davis entomologists describing a study conducted in a watershed near Ukiah, California, in 1988-89. The crucial piece of information it contains for northern California residents is on page 45 in the following quote:

Except for [a particular study in the northeastern U.S.] the cumulative frequency and annual incidence of Lyme disease in the Ukiah study area are comparable to, or higher than, the cumulative frequencies/incidences reported from the Northeast.      Robert Lane

This refutes any claim made by California doctors or insurance providers that Lyme disease does not exist in California or is so rare in California as to justify their treating you like a mental case when you suggest you might have it. In a paper presented at a Lyme conference in 1999, Phyllis Mervine, publisher of Lyme Times magazine, includes this study in a group of three similar studies and compares the results of those studies to California Department of Health Services statistics. [VIII International Conference on Lyme Borreliosis in Munich, June, 1999, published in Lyme Times, No. 28, Spring 2000, p. 35, “Risk of Lyme Disease in California.”]

In describing the study presented below, Mervine cites a later study by Lane and Talleklint-Eisen of ticks in 5 California counties. (The counties are not named, but it is a reasonable assumption that they include the four in Lane’s earlier study.) In that study, the researchers found that nymphal I. pacificus ticks, nymphs being more likely to be carrying Bb in this species, were infected with Lyme disease from 4 to 41% of the time. The average for nymphal ticks at all the sites considered was 14%. That means that at some of the sites, 41% of the nymphal ticks could infect humans with Lyme disease. [Talleklint-Eisen, L. and R. S. Lane, “Variation in the Density of Questing I. pacificus Nymphs Infected with Bb at Different Spatial Scales in California,” J. Parasitology, 85 (7), 1999.]

I have, myself, heard Dr. Lane say at a conference in Ukiah, that those figures vary with micro-environment and annual weather conditions, which indicates to me that though they could be lower, they could also be higher. (I wish I could provide the year of that conference in the name of better scholarship, but I can’t because I have Lyme disease and don’t have the energy to sustain normal scholarly standards. You’ll just have to believe me or not believe me on that one.)

At even the most literate of Lyme doctors’ offices, I have seen Lyme disease information sheets posted that include the widespread but highly distorted 2% figure for I. pacificus ticks infected with Bb. Well, I saw it on my Lyme doctor’s bulletin board and called him on it, whereupon he told me others had posted it and he certainly was not using that number as a guide to anyone’s probability of having Lyme disease. But, that is the figure almost all doctors are using to calculate your probability of having contracted Lyme disease from your I. pacificus tick bite.

That figure comes from one study and one study only, done in 1989 by William Burgdorfer, the scientist who discovered the Bb pathogen that causes Lyme disease. Burgdorfer did not design his study to discover the percentage of I. pacificus ticks infected with Bb and probably never meant for it to be used this way. It is not based on a controlled sample. He merely asked people to send him ticks from anywhere in the range of I. pacificus, which includes most of the West. It is known that the percentage of infected ticks varies greatly from one spot to another. Lane’s studies show this. No control was done in Burgdorfer’s study to insure that more ticks did not come from some areas than others and the 2% is an average for the entire huge range of I. pacificus.

Right there are two enormous sampling errors, if the study had been designed to produce an incidence statistic for Bb in Pacificus ticks, which it was not. Yet, based on that one study, even Lyme doctors will use that number to assess your chances that the tick that bit you was bearing Bb. Non-Lyme doctors will use it to ridicule and not diagnose you; insurance companies will use it to deny you treatment and, probably, Lyme research funding organizations will use it to determine where research should be done, i.e., on the East coast, where that number is much higher.

In her conference presentation, Mervine states that the California Department of Health Services studied four nothern counties and then revised an earlier low Lyme incidence rate for Humboldt County (14 per 100,000) to 66 per 100,000, a rate double the incidence rate for New York state at that time. The point is that persons considering the probability that a tick bite from I. pacific us has given them Lyme disease must not allow themselves to be misled by doctors using incidence statistics for the state as a whole or for the infection rate of I. pacificus nymphs as a whole.

If you were bitten in Humboldt, Mendocino, Sonoma or Lake counties, the incidence rate for California, .5 per 100,000, which averages in counties with a zero incidence, does not apply to you. Those four counties, said Mervine, are responsible for the bulk of reported cases in the state, at least in 1999, when the paper was presented. If the incidence rate for those four counties alone is calculated, relating Lyme cases to the population of those four counties alone, using figures from 1991 to 1995, the incidence rate is from 9 to 74 per 100,000 people, as high or higher than that rate on the East coast. And, even those figures can be assumed to be a fraction of the truth, given the enormous number of cases that do not meet the unrealistically stringent reporting criteria used by public heath entities, following the lead of the Centers for Disease Control.

On top of all that the CDC itself has always said that, in order to get the true incidence of Lyme disease in any given area, one must multiply their incidence by a factor of ten! They acknowledge and even specify to doctors that their reporting criteria are too narrow to be used for diagnosis and only catch a tenth of the real cases. Its just that doctors and insurance providers routinely ignore them on this.

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KPFA interview with Dr. Harris and Amy Tan

A great interview with author Amy Tan, and Dr. Steven Harris, MD, Lyme specialist. Please take the time to listen to this update on Lyme Disease. Share with friends and those who don’t understand the seriousness of Lyme Disease from a tick bite.
Post this link where ever you can and share the information. Lyme is ‘The New Great Imitator’ and the spread of cases world wide in the last decade suggest it is heading in the direction of becoming ‘The Next Pandemic’ like AIDS.
Become educated and become an educator !http://www.kpfa.org/archive/id/99376
LIFELYME
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Notes on “The Lyme Wars”, New Yorker article by Michael Specter

http://www.newyorker.com/reporting/2013/07/01/130701fa_fact_specter?currentPage=6

Just read above article in New Yorker, June 30, 2013. It has some new information, a lot of old misinformation, but at least attempts, through the snide attacks on Lyme activists, to present doctors from both sides. Below are some notes I took while reading it. They are in order of appearance in the article. “B-flats” is my pet name for Bb, Borrelia burgdorferii, the most known organism causing Lyme disease in America. Bb =Bb the musical key of B-flat. Just a bit of silliness to lower my stress when dealing with Lyme disease ignorance.

New Yorker article says, “…there is no evidence that prolonged antibiotic therapy helps patients with Lyme disease…”

Well, there is a lot of evidence related to primates and other mammals, and if you are relying on the NIH studies, there is evidence there, distorted as those studies were by sampling errors and cessation of the studies much too soon to call them studies of prolonged antibiotic therapy. And, the insurance-owned doctors who always say “no evidence” disingenuously ignore the fact that they pretty much control research funds. There’s no research because the funding agencies are funding only the research that these doctors, with an interest in the outcome, approve. Round and round. Don’t fund research that would prove it and you can always say, as the insurance companies want you to, that there’s no scientific proof prolonged treatment works. And any graduate student can tell you, if you don’t get funding, there ain’t gonna be no research. Well, aside from me and my ethnographic research. I funded it and that’s why I’m so poor.

Re: RIFE machines “little empirical evidence exists  to demonstrate that it  works.” Hmmm. Wonder why there’s so little “empirical evidence.” Anybody get funded to study this?

Mentions IDSA guidelines, no mention of ILADS guidelines. Well, no mention of ILADS until way, way into the article. For a balanced presentation, he should have brought them into it in the same paragraph that he brought up IDSA. If you don’t know, IDSA is the Infectious Diseases Society of America, the mainstream doctors with a major stake in keeping Lyme disease “easily diagnosed and treatable,” both because some of them are consultants for insurance companies and research agencies–they get paid to present a certain view–and because they wrote articles at the very beginning of the Lyme epidemic that would now be shown to be incorrect were any research into the opposite view done. They have reputations to maintain and don’t give a rat’s ass for true science, which would demand an open mind and no vested interests.

“. . .in most cases, the tick bite causes a skin rash, called erythema migrans.” Lord, not that again. No, in most cases it does not. 50% of people later diagnosed with Lyme remember neither a tick bite nor a rash. Some say more, some say less. But “most” makes you think its a whole lot, when “most” can be only 51%, leaving the other 49% twisting in the wind.  The article later says up to a quarter of patients never get a rash. This may be based on new studies I am not aware of, but even so, 25% of patients who never get a rash is a whole lot, given what the consequences of that are. He should have said, “in some cases” and put in a sentence about the ongoing research into this number.

“(The rash) which is easily identified by its bulls’eye. . .” No, its not easily identified by its bull’s eye. That’s an outdated bit of dogma that should have been dumped long, long ago. The bull’s eye rash can vary a lot with co-infections or its position on the body. Recent publications have said if you had stripes with your rash, it indicates a co-infection with Bartonella. It can be triangular or oval. It can be 2” in diameter or cover your whole back. The only thing easily identifiable about the rash is that it expands outward over time from the tick bite. One of mine, for instance, was in my groin. On my front upper thigh it extended, rapidly because I was already infected, in a perfect half-circle that met curved sides on the back of my thigh. If flattened out, it would have made a semi-circle. That part cleared into a half-bull’s eye with the tick bite in the middle of the straight part.

On my abdomen, it was diagonal, evenly spaced stripes. I can’t remember if they cleared at the same time the semi-circle did. The whole thing went from just above my knee to my bra line. My doctor dismissed me as having Lyme disease because the rash was not “round enough” was “too big” and appeared too early. He ignored my flu-like symptoms which bordered on delirium, perhaps a sign of babesiosis. To humor me, he gave me ten days of erethromycin, which is the wrong antibiotic for too short a time. He misdiagnosed me because he was way, way too influenced by the protocols, established by the mainstream institutions, which rely on the statements of doctors working for the insurance companies. They want a perfectly round bull’s eye rash with no variations, before they will diagnose Lyme disease. Had I been diagnosed correctly at that time, perhaps I would not now be using a wheelchair.

The article says 20% of Lyme patients don’t get better after treatment and that is called Post-Treatment Lyme Disease Syndrome. That’s what doctors following IDSA call it. ILADS calls it chronic Lyme disease. He should have said that immediately after bringing up Post-Treatment Lyme Disease Syndrome. ILADS points out that IDSA has absolutely no evidence to support PLDS whereas there is evidence to support persistent Lyme Disease. (I have a whole notebook of such studies and tomes of such studies have been presented to investigative bodies by Lyme activist organizations. The problem is that a higher standard of evidence is being required for Lyme disease than has been required for other diseases in the past, in part due to the reasons I presented above.)

The article mentions new co-infections I never heard of–at last, some new information. These two are B. miyamotoi, a genetic relative of B. burgdorferii, the bacteria that has been studied and assumed to cause Lyme disease and Powassan virus, about which I know nothing at this point.

Fully two pages into the article we finally get a clue that there is another viewpoint and the author quotes Brian Fallon, a staunch longtime defender of chronic Lymies, and it, finally, mentions ILADS.

The author states that most doctors reject the term “chronic Lyme,” in part because many people who say they have it are not infected with Borrelia. I’m trying not to “go postal” here. He makes absolutely no mention of the gigantic testing problem. Most people are given a Lyme-titer by non-Lyme specialist doctors. It is up to 40% unreliable, giving false pos and false neg. The longer you have had Lyme disease when you get the test, the LESS likely it is that you will test pos. That is why I advise people to skip that test entirely and go to Igenex and get one or both of their panels before believing that they are not infected with Bb. When anyone says anyone is not infected with Borrelia, I want to know what test they had. Are they not infected or did you just not find it because the tests suck?

A really infuriating portion of this article is the one that insinuates strongly that Lyme activists are fanatics who “have not done their homework.” I’d say Lyme activists have done a hell of a lot more homework than the mainstream anti-Lyme activists who lazily or cynically just accept the status quo because its easier to do that. Way easier. Lyme doctors are actively persecuted by anti-Lyme activists, in the past, now, and including the loss of their licenses. The author quotes Gulick (I thought his name was Gluck, don’t know who’s in error) at Cornell calling chronic Lyme patients “true believers.” I’ve heard him do that before. I think he’s a “true believer,” in Lymie true believers. But, I digress.

Here’s something new, or new to me. Researchers can sometimes find different strains of Borrelia in the same tick. I have read that different strains manifest in different ways, causing that much more diagnostic confusion.  So now there’s another reason why Lyme disease presents so differently individual to individual. This is in addition to the possibility, a strong one, of multiple co-infections.

The article states that it takes ticks “36 hours to transmit bacteria.”  Oh no, it doesn’t. There is enormous variation in the literature on this. I have read many studies by mainstream researchers, trying to get a fix on this. The studies range from zero transmission time to 72 hours. But, get this, there are studies indicating a difference between the East and West Coast on transmission time. Studies have shown that one third of California Lyme ticks carry Bb in their saliva glands, as opposed to their gut. The tick infects you by regurgitation from its gut, which takes time. But, if the tick on you is one of those one-third and it has Bb in it, the logical assumption is that transmission time is immediate. What would stop it?

Not only that, but if you damage the tick while removing it, for instance by scratching it off in your sleep because you are one of the people who is allergic to tick saliva, transmission time is also immediate. That’s why you slap some rubbing alcohol on the bite immediately after removing the tick, to try to kill any B-flats that escaped into your bloodstream while you did that.

Finally, much too late in the article to claim a balanced presentation, the author does mention false negs and pos on tests. We assume he means Lyme-titers here. He says that the PCR test, one of the ones in Igenex’s initial panel, is easily contaminated and produces lots of false positive results. That is true, which is why you want to get a panel of different kinds of tests from an excellent lab that specializes in Lyme disease. Lower chances of contamination. Higher chance of finding B-flats if they are there. He compares the Lyme testing situation to tuberculosis testing in India, where many people test pos and many never develop symptoms but are given highly toxic drugs. Now they have a machine that does it better. One doctor speaking to the testing problem  says we need a machine like that for Lyme. Well, gee, any research funding for that? I’m guessing, not.

According to the article, public health officials stress that if doctors see a bull’s eye rash, they should assume Lyme disease. That’s nice, and that’s what has been in the CDC guidelines for reporting for many a year and that was accepted by all doctors for many a year. A “doctor-diagnosed” bull’s eye rash, of course, and I’ve already described my experience with a “doctor-diagnosed” bull’s eye rash. And, I’ve always said, to hell with the doctor-diagnosed part. Its very distinctive and unique. Any fool can compare what’s on her/his body to pictures of Lyme rashes found online. You don’t need no “steeenking” doctor for that. But that’s not what the IDSA guidelines currently say and CDC has been waffling on that. The guidelines put out by IDSA only a few years back removed the bull’s eye rash as a definitive diagnostic for Lyme disease, based on “no scientific evidence whatsoever,” to quote ILADS. CDC removed it from their website as a reporting datum, but individuals at CDC told Lyme activists privately its still a diagnostic and ILADS still includes it in their guidelines.

I’m going a step further. This refers back to my doctor saying my rash appeared “too early” for it to be a Lyme rash. There are indications in the Lyme literature and I have had it confirmed by a Lyme-literate doctor based on his cases, that if you get a bull’s eye rash and/or flu-like symptoms very soon after the tick first attaches, like maybe even hours, it is an indication that you already had Lyme disease. I first saw this reference in Polly Murray’s early book on Lyme disease The Widening Circle (she’s often referred to as the “mother” of Lyme disease because she and another woman were the first to alert public health authorities of a strange medical problem in Lyme CN). She observed that Lymies bitten by subsequent ticks got early symptoms rapidly. Her statement confused me because it said “tick,” not Lyme-tick, bearing Bb. Now there are statements in the literature that it doesn’t even have to be a Lyme-bearing tick. Any tick bite will do it because the B-flats already in the body are reacting to any tick saliva.

That happened to me. My big rash appeared within 20 hours of the tick bite and my doctor therefore dismissed it as “appearing too early.” I now know I had been bitten many times before and some of those had produced bull’s eye rashes and flu-like symptoms. I just ignored it because I didn’t know any better and then later, because I’d had two false negs on Lyme-titers when Lyme-titers got invented. (No worries, many pos tests later, better tests.) Reconstructing my medical history in the light of new knowledge, I now remember that strange rash that expanded out from under my armpit and turned into a circle not long after I held my neighbor’s goose under my bare arm, the goose that was part of a shipment of birds recently in from the East coast a year or two before Lyme disease was named after Lyme CN. And, I have myself seen and photographed a round rash around a bite of some kind (sometimes you can’t see the tick because its a transparent nymph or larva) that appeared on a friend of mine who has had symptoms consistent with Lyme for years. Hers appeared only hours after she took a walk in tick brush, along with fever and mental fuzziness.

The article mentions recent studies, by Fallon and Yale researchers, that “raise the possibility” that Bb persists after treatment. It says especially in areas near cartilage, the B-flats cause swelling. Hello, nice to get a little vindication on that one. I’m not nuts, my ankles and knees have been swollen for 20 years and get worse if I get off my Lyme regimen. I’d say the recent studies don’t raise the possibility of persistence. That possibility has been documented for years, for anyone researching the literature with an open mind. I’d say it confirms the possibility.

The studies include one by Dr. Fallon, who saw metabolic brain abnormalities in documented LD patients who still had symptoms after treatment, as compared to the brains of healthy controls. UC Davis researchers found Bb in macaques who were given LD, then treated with standard treatment. Researchers then put clean ticks on them, ticks they had raised themselves and knew for sure had had no contact with LD. They left them on a while, removed them and found Bb spirochetes in the ticks. Similar research is now in progress for humans.The die-hards will dismiss these because the first did not involve actual B-flats and the second is an indication for primates, not humans specifically. Hey, I studied primatology. I’m an anthropologist. I’d say chances are excellent that what works for or against macaques is very likely going to work for or against humans. But I hope that human study gets out soon and kudos to those heroes now allowing ticks to be put on them.

Here’s a quote from an anti-Lyme disease doctor who has taken much flak from Lyme activists over the years. Dr, Gary Wormser says in this article, “if there were [evidence of persistence] I’d say ‘so what.’ You would have to show me that the spirochetes continue to produce disease and you would have to show me that they would respond to ABx.”  Its an overly long quote, much longer than anything Fallon says. Wormser claims undiagnosed but sick people go from doctor to doctor until they find one that will say they have LD. Then those people are happy because somebody has finally taken an interest in them.

He thus implies that we’re all hypochondriacs or in some other way mental cases looking for attention. No suggestion is made that we might be well-trained PhD scientists, entirely comfortable reading dense badly-written medical articles, who thoroughly researched the literature with an unbiased eye and concluded that the best evidence supports the idea that we have Lyme disease and that most doctors are operating on much less information about this disease than we are, therefore we need to search for a doctor who at least knows as much as we do, hopefully more. I’ll say I was happy when I finally found one!! Not because I was seeking attention, but because I was seeking treatment for my nightmarish illness.

Another quote from Wormser, “If you said you had renal failure and need dialysis, the doctor would do a test. If it turned out neg, nobody would do it.” Well, yeah, but longterm oral antibiotics are not nearly comparable to dialysis as a dangerous procedure. IV, maybe, but I still don’t think so. And I’m guessing the test for renal failure is a lot more definitive than the most used test for Lyme disease. In the absence of a good test, but with a strongly suggestive case history, would not a truly conscientious doctor still do the best she/he could for the patient?

Wormer’s school cites 4 double-blind, placebo-controlled NIH (National Institutes for Health, major science funder) trials over last 15 yrs. Each one involving alleged prolonged ABx, testing whether they help to eliminate symptoms. In the two largest, there was no improvement. I have to ask, are these the same ones that as a first step, eliminated all known LD patients from the study on alleged ethical grounds (now, they get ethical, when it will skew the results in the direction they desire) and only went 3 months, which is not nearly long enough? It took me a year or more of oral antibiotics and Flagyl before I began to improve.

Two others were equivocal. None concluded that risks of extended IV ABx outweighed the theoretical benefits of longterm IV ABx. Here is a good example of the bait-and-switch game used so frequently by doctors like Wormser. There is no mention of the lack of danger of longterm oral antibiotics. IVs are risky and can cause severe infections, no argument there. But the question I’d like to have answered is do the risks of longterm oral antibiotics, perhaps in combinations, outweigh the documented benefits of longterm oral antibiotics? Many ILADS doctors say they do and treat patients on that basis.

And here’s another question, does the benefit of longterm antibiotics outweigh the risks of what’s going to happen to Lymies in the longrun if you don’t treat them at all or not enough? Some research, looking at the brains of people post-mortem, indicates that untreated Lyme disease can eventually cause or turn into MS, ALS, Alzheimer’s or Parkinson’s. A friend of mine, longterm Lymie, was just diagnosed with Parkinson’s and I know of two ALS deaths of friends of mine who are very likely to have had Lyme disease. Much likelier than to have had ALS, which is pretty rare. They were tramping around in the same tick-brush I was and ALS, which has a genetic component, was never in their families. I know because I had this conversation with their spouses before they died.

The article mentions Dr. Richard Horowitz, who is what Lymies call a “Lyme-literate” doctor. He has seen 12, 000 patients with tick-borne ailments. He avoids ABx altogether and focuses on co-infections, which he treats with “different regimens.” He uses dietary restrictions and supplements to detoxify the body and starve bacteria and argues that conventional medicine is too focused on just Bb. Half of his patients present with babesiosis. This, he says, is treated in an “entirely different way from Lyme. Together, they cause far more harm than either one does alone.”

Whoa, some validation there. I have no Lyme doctor and had to stop seeing mine after 2.5 years because I just couldn’t make that 600 mile trip anymore. So, I stopped the ABx and went to a holistic regimen including dietary restrictions and supplements and exercise and a whole lot more, including some prescription meds for symptoms. We can’t all get to see Dr. Horowitz, so I don’t know what to do about all the co-infections I believe I have or have had, but I have found his writings very useful in developing my holistic regimen and its nice to know my efforts are supported by someone in the mainstream medical world.

The article mentions a federal advisory committee working on ways to improve Lyme diagnostics. Huh? Who are they, where are they? Whoosh. That one went by real fast. But, I venture to hope that that committee is balanced–unlike the one IDSA used to develop its inaccurate and misleading guidelines and then the one it chose later, after the state of Connecticut held hearings and insisted they write new guidelines with a new panel they were then allowed to select– What??!! Reject their guidelines, require new ones, require a new panel, then allow them to select it? Slice of bias, anyone?

The author admonishes Lyme activists to reject “those who foster dark conspiracies.” He says he talked to “several Lyme activists”  who told him Times reporters had been restricted from writing about the Lyme controversy and then he talks about the Plum Island theory. This is one that has been circulating for years. Plum Island, where germ warfare is researched, is very close to Lyme CN, where Lyme disease first was documented. The question is did the government let something escape from Plum Island accidentally or on purpose to test it? Something being worked on as a biological weapon? I don’t have the expertise to speak to that, but I don’t think those who do are “fostering dark conspiracies” and I do think all aspects of this are wide open, since Lyme research is obviously so skewed.

It is true that the U. S. Army has a huge amount of information on Lyme disease. One theory on that is that, because Bb is transmitted in the Persian Gulf area by sand fleas and Gulf War and current soldiers are trained in the desert, get bitten a lot and get Lyme disease, it behooves the U. S. Army to sponsor and collect Lyme research.  It has been suggested that Gulf War Syndrome is, in fact, Lyme disease. I believe the government could do it, would do it and has done it. I believe articles I have read and documentaries that have claimed the federal government/military has released germs into the public to test their efficacy as weapons and has otherwise used unknowing civilians as guinea pigs. Developmentally disabled children were fed radioactive food by the government to see what would happen. Tuskeegee. There’s more.

I don’t know if they did do it in the case of Lyme disease, but if they did, it surely is another reason why it is so hard to get anyone’s attention on this or to get research funding into real research on Lyme disease. It would explain the stonewalling and use of ridicule to debunk Lyme activists. In the past, I did have a question for the Plum Island theory people, though. Why would the government choose a disease that can take so long to incubate as a germ warfare weapon? Wouldn’t they want something that moves faster?

That question was recently answered for me by a History Channel program about Plum Island. There was an incident shortly before Lyme disease entered the public consciousness in which saboteurs had infiltrated the Plum Island facility as workers and then stolen a random sample of vials containing diseases. When caught, they confessed dumping the contents on the mainland. They did not know which ones they dumped. Lyme disease could well have been one of those–not kept to turn into a weapon, but kept for other scientific purposes, such as research on prevention and cure, given that soldiers were getting it. That was enough to explain that part of the Plum Island problem for me, but I make no claims as to the accuracy of Plum Island conspiracy theory–I don’t have the energy to research that–I’m just telling you my thinking on the subject.

Now comes another example of the bait-and-switch on longterm ABx risks vs. benefits of same. There is now pending a New York bill that would require insurance companies to reimburse longterm ABx “even though no study has proved them effective and IV antibiotics can cause serious, sometimes fatal complications.”   Yeah. Again. Maybe IV antibiotics do, but longterm oral antibiotics don’t, or nearly as much. As Lymies point out all the time, longterm oral antibiotics are used sometimes for years to treat acne. How serious can the effects be?  See how neatly he switched from oral ABx to IV ABx to talk about complications? Apples and oranges, but, hey, whatever works.

Another so-called dark conspiracy the author presents is the theory that the NIH made a pact with drug companies to ignore Lyme Disease. He is very dismissive of that suggestion, but presents no research into it. I’ve heard the theory. I can believe it. They would do it, they could do it, it would explain a lot, but I don’t know if they did do it. However, from a sociological viewpoint, I’d say there is every reason to think that happened on some level. Maybe not a pact, maybe just a wink and a nudge between a few powerful people in a private room. Happens all the time, does it not?

The article wraps up with an attack on Lyme activists, comparing them to AIDS activists unfavorably. He says they did their homework and we didn’t. Infuriating. You could only say that if you were yourself completely ignorant of the quality of the research done for years by Lyme activists and ILADS. What evidence is he presenting that Lyme activists are any less informed on their issue than AIDS activists were? The “several” Lyme activists he spoke to who were allegedly engaged in “dark conspiracies?” What a slander! I have to tell you, I’m not a medical doctor, but I’ve read hundreds of articles by doctors on all sides of the issue and I have the credentials to say that by and large the most intelligent and scientifically valid ones are the ones written by Lyme-literate doctors. And also they are the ones most based on actual observation and treatment of real live Lyme patients, not bacteria behaving badly in a Petri dish!! The nerve!

Lastly, a bit of a footnote indicating the sloppiness of much that is written on Lyme disease. At the end of the article is a sidebar on prevention. In this sidebar it is stated that a tick CAN take 36 hours to transmit Lyme disease. In his article, he says it DOES take 36 hours. See what I mean? Big diff.

 

 

 

 

 

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The Barren Waste

One of the components of my daily Lyme regime is water. I’m always dry, not only as a result of Lyme itself, but also probably from all the meds and supplements I take. It was hard for me to add drinking as much water as possible for several reasons.

In the first place, I’m one of those people who dislikes water and actually chokes on it. Another reason is the memory I have of being in the hospital with Lyme hepatitis. (They diagnosed it as Hep A, but that was process of elimination done while in a state of ignorance about the possibility of Lyme hepatitis–one of the things I figured out later on when studying Lyme in general and my case in particular.)

I was admitted, the ER doctor told me, not only because of my symptoms, which had lasted more than a week at that point, and because of my unbelievable liver panel (they sent it out twice to different labs and told me later they had never seen such high numbers in a person who was not dying at Mad River Hospital in Arcata, before), but also because I was so dehydrated. The only treatment they gave me, other than heavy duty nausea medication, was IV saline to rehydrate me. They do this when they know you can’t possibly drink all the water it would take to rehydrate you enough.

I did not have to drink water, but I did have to get up every 15 minutes, in spite of the muscle and joint pain they didn’t really believe I had because it was not a hepatitis symptom, drag the IV with me past about 10 people there to visit my roommate to get to the bathroom, manage to pee knowing they are all listening just outside the door and then drag the IV back, painfully, get back into bed and repeat the whole thing 15 minutes later. All this while dealing with intermittent nausea, headache with low fever and brain fog so bad that when the doctor asked me if I had had a hysterectomy in my past, I said yes, confusing it with my tubal ligation. My daughter, then a nursing student, who had brought me to the ER, straightened that out. I scarcely remembered my name.  It was hell and if someone had come and told me I was dying I could easily have believed it.

So the point of that is that it impressed upon me how important water must be in general, it gave me a really good motivation to not relapse and it gave me a dandy visualization to whip myself with.

When I resolved to make drinking water part of my holistic plan, the first thing I did was go and buy a water filter. Lyme disease damages the organs that clear toxins from the body. Longtime Lymies should assume that those organs are not working at 100 percent and clear all the toxins they can before ingesting them. There is also some kind of connection between Lyme disease and mercury in the body, one that I don’t quite understand but other scientists do. Many Lyme clinics now routinely test for lead and mercury before proceeding with Lyme antibiotic treatment, in order to deal with that problem first should it present itself. Seems to me if your body is tending to produce or store mercury because of Lyme disease, you’d certainly want to filter it out of your water so that you don’t add any more. Because of this organ damage problem, as well as respiratory allergies exacerbated by Lyme disease, I also have an air filter and use it a lot, but I digress.

In addition to the toxic filtering, water just tastes a whole lot better, most places I’ve ever been, if its filtered. If you’re going to be drinking a lot of it, the better it tastes, the easier it will be to drink it.

Then, I made a new rule, based on the idea of drinking games. To make myself get over  hating to drink water, I started slowly. The rule is, every time you think of water or see water or hear someone say water, you must take a sip. It can be the tiniest sip you can manage, maybe just rinsing out the mouth, but you must take it each and every time. You must carry a water bottle with you at all times and keep it within reach so that you can do this immediately.

Furthermore, you must try to expand the sip, each and every time. Little sips, a big swallow, two big swallows. You don’t want to do it. Its going to make you have to go to the bathroom way more often and, depending on how much pain you are feeling on any given day, this can be a painful journey BUT (here’s my visualization) just pretend you are back in the hospital.

You did all that then, you can certainly do this much now, especially if its lowering the odds that you will have a relapse, get Lyme hep again and have to go back to the hospital.

If I really don’t want to drink water because I know it will increase journeys to the bathroom I just put myself back in the hospital in my head and that usually works. These days, I no longer need to play the drinking game or put myself back in the hospital in my head. I keep about a half-dozen drinking bottles, large and small, circulating, drinking them up and filling them up as I go. I keep one by the computer, one by the TV, one on my mobility scooter and the rest filled up in the fridge. (I’m from the south, I grew up on ice tea. My water has to start out cold, though it can be too cold when I first take it out–hurt my teeth.)

I only make myself play the drinking game when I’ve been slacking off on the water. I still have signs of dehydration all the time, such as the dent that stays on your fingertip if you pinch it, but I have to believe that drinking as much water as I can manage (I’m never going to be in danger of water intoxication, so I don’t worry about THAT too much) is better for me than not drinking as much water as I can.

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A Tour of an old Lymie’s body

Introduction: diagnosis difficulties

The most frustrating diagnostic difficulty with Lyme disease, aside from the lack of a widely accepted accurate test, is that there is only one symptom completely unique to Lyme disease, the rash, and that one appears in less than half of Lyme cases. In addition, whereas the EM (aka bull’s eye) rash associated with a tick bite was once accepted by the mainstream medical world, even the Centers for Disease Control, it has now been dropped by those doctors and institutions as being uniquely characteristic of Lyme disease, based on no science whatsoever.

Throwing out the EM rash as a unique diagnostic makes Lyme disease even more difficult to diagnose, whether in its early stage or in later stages. I include mention of the rash in relation to later stages because the EM rash is not specific to the early stage and may appear at any time later on at any location on the body, not just at the site of a former tick bite. This “secondary” rash may or may not be associated with other symptoms of a relapse. Strangely enough, it sometimes even has a little dark spot in the middle that looks, at first, like a tick! I have, myself, had several secondary rashes, some along with other signs of a relapse and some not.

Should a person infected with Borrelia (the Lyme disease bacterium) fail to experience the early-stage symptoms of EM rash and/or flu-like symptoms in association with a tick bite, then that person may not experience Lyme symptoms until years later. Those later-stage symptoms may present in any order or combination and are so diverse (see symptom list on Northcoast Lyme Disease website) and sometimes so subtle that only a doctor trained in Lyme disease diagnosis is likely to detect some of them or to detect a pattern of Lyme symptoms. Lyme doctors, unlike non-Lyme doctors, will pick up on the more subtle clues, such as word substitution or intermittent balance problems and will look at a patient’s history with a eye to cumulative patterns. Given the unreliability of the lab test non-Lyme doctors are most likely to give, noticing the cumulative pattern of symptoms may be crucial to diagnosis.

In other words, you see your local primary doctor, complaining of tennis elbow, get treated for that, come back six months later with extreme PMS, get treated for that, come back later for depression, get treated for that, come back later for collapsing legs and extreme back pain and get sent to a neurologist, who diagnoses you with MS or ALS or Parkinson’s, all incurable. You may end up being sent to a number of specialists, each of whom is looking for his/her own specialty and downplaying any other specialty.

The neurologist may give you the highly unreliable Lyme-titer test, you test false negative, and the neurologist moves on to a spinal tap which may test positive for the particular protein that is common to both Lyme disease and MS. This happened to me. Luckily, that was the only indication of MS and I was already seeing a Lyme doctor who knew about that shared protein. It is important not only because Lyme disease is sometimes curable and MS isn’t, but because the treatment for MS is entirely different than the treatment for Lyme disease and is incredibly expensive.

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Email on Alternative Treatment

Just received this email, of interest to persons interested in alternative treatment of Lyme disease. I have not personally seen this book, but I did read the first edition, which contained an excellent summary of the Lyme treatment situation and the problems attendant to treatment with antibiotics. I, myself, am unable to use the herbs I’ve tried because of acid reflux/hiatal hernia. Just smelling the ones I tried gave me heartburn. But, I have consulted with people diagnosed with Lyme who are allergic to the standard antibiotics used for Lyme disease and cannot financially access others they might be able to use. Since these persons did not have stomach problems, I recommended using Buhner’s first edition hopefully in consultation with a local herbalist who specializes in Lyme treatment, though the book can be used without the services of an herbalist.

Hi Jentri –

My name is Sarah Armour, I’m the publicist working with Stephen Harrod Buhner on promotion of his new book, the second edition of Herbal Antibiotics. Stephen asked me to reach out to you and let you know that he’s just released a vastly updated and expanded version of his book, with substantial new information on the herbal treatment of Lyme Disease.

The new edition of Herbal Antibiotics builds on over a decade of additional study and work by Stephen Buhner in the treatment of resistant and emerging microbes. Antibiotic resistant bacteria don’t develop resistance to plant medicines; this book outlines in-depth treatment approaches for both those who suffer resistant infections and those who treat them. It is a significant step forward in the sophisticated use of plant medicines as primary treatment for infectious disease.

The second edition of Herbal Antibiotics, expanded from 144 to 480 pages, features:

  • Detailed discussion of systemic antibiotics effective against 21 different resistant bacteria
  • A list of plant synergists that can increase the effectiveness of the systemic antibacterial herbs
  • Expanded herbal source and medicine-making chapters
  • Lengthy list of immunity system-supporting herbs to help prevent infection

Herbal Antibiotics Book CoverI’ve attached a .jpg digital postcard with book information in the hopes that you’ll share it with your support group. Feel free to link to the Herbal Antibiotics page on our website at http://www.storey.com/book_detail.php?isbn=9781603429870&cat=Well-Being&p=0. The book is also available through Amazon and other online sources if you’d prefer to link through your own referral account.

Thanks so much,
Sarah

____________________________
Sarah Armour
Senior Publicist
Storey Publishing
www.storey.com
InsideStorey.blogspot.com

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