Reply to Comment March 29

Mike Wilmeth you wrote…
My test came back negative.

>Matters a lot what test you got. Hope you have the paperwork–always get copies of lab work for yourself and copy of doc’s dictation on office visits as well. Helps you self-diagnose and also monitor what your doc is doing. If you have any trouble getting those, just keep saying attorney over and over again. You are legally entitled to all you med records in CA.  If you have the report, look and see if it was a Lyme-titer or ELISA. If so, ignore it. They are up to 40% unreliable.  False pos and false neg. Actually, I’d pretty much ignore a neg, given yr symptoms, unless it was from Igenex. Most labs, esp ones used by non-Lyme docs, esp Quest, are unreliable for Lyme disease.

What’s the best way to learn if I have it?

>History and symptoms first, Lyme Initial Panel from Igenex Labs next, followed by urine based panel if first is neg or inconclusive. Initial is a blood test for antibodies, more room for error or just if you’ve had it a long time, they’ve moved out of your blood into tissue. Urine test is for the actual DNA of actual pieces of actual Bbs. You need a big shot of antibiotic for that one, doc has to give it. Instructions in kit. It causes a die-off, flushes dead bodies into urine.

I have tons of symptoms, to many too list but a few are, dizzyness, heart palps, fatigue, pain all over, head and neck pain, visual issues,panic attacks and anxiety  and much more.

>Every last one of those is a Lyme symptom, though each also can be symptom of something else. The fact that you have such an array over different body systems is suggestive of Lyme disease.

Its very confusing what to do to find out for sure. Do I have bood sent to the lab you mention? Do I need to travel? What is the best route to find the truth? Ive had a tom of blood work, heart moniters and test, brain ri and they see  no other things that could be causing my symptoms so I suspect lymes. I was bittin about 5 times in Humboldt , over 5 tears ago. I have also ripped dozens of ticks from my dogs over the years.

>In your position, with residence in Humboldt county, a dog and known tick bites and your symptoms here’s what I would do.

1) Go to igenex.com, read their material on tests and Lyme disease
2) call them up and order a kit for Lyme Initial Panel–unless you think one of the others is more applicable
3)when you receive it (its free), read instructions. You will need a doctor to order a blood draw (Mad River Labs has been doing them, but Open Door Clinic won’t) and to give you the results when they come back. That does not need to be a Lyme doctor, only a doctor who is willing to work with you. There is paperwork for you to fill out in the kit.
4) when results come back for initial panel, be aware that you are considered pos by Igenex if you have pos results on any one of the four tests. Docs will want to take an average of the four–that is incorrect. If you have neg or inconclusive results on all four, especially given your history of tickbites and array of symptoms, Igenex will recommend that you follow up with their other panel, involving urine tests–much more specific to Bb, but not FDA approved. Its gonna cost you. See prices on their website. If the results come in and the doc looks bewildered or stammers, contact me, I’ll interpret the report for you.

Meanwhile, go to my big list of symptoms on website and look at all of them, note ones that apply to you. Some are very subtle and you may have had them and dismissed them. Then, assemble all the medical records you can going back to when you think you were first infected, realizing that you may not have had early symptoms at all. First tick bite, first exposure to tick habitat, no matter how far back that is. If you came from the East, you could have brought it with you. Arrange in chronological order, incl lab reports. Then compare and figure out what Lyme symptoms you have that show up in the paperwork. You might be surprised how many did and were dismissed by your doc. (Well, gee, I don’t know what this means, but….)

This is so you will be armed when you do see a doc about Lyme disease, if you decide you do have it, based on symptoms and tests.There are no Lyme specialist doctors in our area (and pretty much anywhere) that accept insurance, but there are two in McKinleyville, Cherie Edgar and Beverly Copeland, who accept cash. Last I heard there is a nine-month waiting list to get in to see either. But, you can get treated by a non-Lyme specialist if you have armed yourself and know what to ask for and have a doc that respects you.

See ILADS guidelines, link on my website. Pretty technical, but written by the good guys and it tells you how much of what antibiotic under what conditions. If you don’t want to wait for Edgar or Copeland, find a doc who will get you started on antibiotics, IV or oral, depending. My Lyme doc never did IV unless there was a life-threatening situation–he would have put me on IV when I was in hospital with Lyme hepatitis.

You didn’t mention if you had any symptoms with the tick bites. Could be definitive sign. Ignore most of what you hear about transmission time. If the tick was damaged in removal (you used the word “ripped”), you were injected with whatever diseases the tick was carrying. One third of CA Lyme-bearing ticks are believed by some researchers to be capable of passing it immediately if they have it. And, sources vary widely in  stipulating transmission time–4 hrs to 48 hrs.

Did you get an expanding rash with any of them? Many pix of rashes online–I haven’t gotten around to putting any up on my site, but think there’s a link to some. In the past, the CDC accepted you as a Lyme case for reporting purposes if you had the typical rash “doctor-diagnosed.” For your own purposes, you don’t need no stinking doctor, if you had a rash and remember what it looked like, you can find yourself in the pix online. The CDC no longer accepts the rash alone as a definitive indicator, but they stopped doing so for no scientific reason at all. So, I say, if you had the rash, you have Lyme disease, period. That’s for your own info.

Rash can vary a lot, depending on co-infections, location on body. Less than half of Lymies ever  got the rash, so not getting it doesn’t mean you don’t have LD.   Key thing about the rash is it expands out from around the bite. First one is always around the tick bite (you can get others later without a tick bite). Starts small, don’t confuse with typical bugbite welt some people get, allergy to tick saliva. This one may creep out from under the “bug bite” or just start small around tick. It is pink, expands, may or may not get darker in center, may or may not clear inside dark area to form “bull’s eye”. Will be 2″ to covering your whole back. May be faint, may be dark. Will appear on average 7 days after start of bite, will disappear without treatment, but you still have LD.

IMPORTANT:   if you already have LD and any tick bites you, you may get the rash and flu-like symptoms, but sooner than 7 days, maybe within 7 hrs. Any tick saliva will excite Bb you already have and produce early stage symptoms much faster than normal. I take quick appearance of the rash, esp on a person that’s been vaguely sick a long time, as a sign that person already had LD, never got early symptoms, and is now a late-stage case. You don’t need to travel to get tested, or if you have a doc willing to follow ILADS guidelines in treating you, or if you’re willing to wait 9 months for Mck docs.

I’d advise getting Igenex tested now, thru primary doc, then  if you have it and want some whammo treatment right now, you would have to travel. I’m attaching my n. CA doc list, outdated, but a start. Many people from here go to Gordon Associates in Santa Rosa or one of their docs also treats in Mendocino (Neal something or something Neal). Hope that gets you started.

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