Checking in, and Lyme
 

Hi--I've not been on the board lately, but having been an old, regular, and still keeping lizajane.org going, I thought I'd check in and update you.

Brief background for those who don't know: I've had pn since at least 1996, but before that had mono-neuropathies, with swollen and inflamed single nerves. I also had some joint swelling and pain, and was diagnosed as fibromyalgia by some...before, that is, I was diagnosed with neuropathy.

I've had loads of sinus infections, and the only times I've felt really really well have been when I was on antibiotics for an infection, especially IV Rocephin, and oral ceftin or biaxin. I'd wondered about that on this site a lot.

I had 4 negative lyme tests.

This winter I saw a new ENT who was sure I had lyme and who sent my blood to Igenex, a lab that specializes in tick-borne diseases. It was positive. At first I was skeptical, as mainstream doctors seemed to think this was NOT a mainstream lab. But the more I read, and as time passed, it became clear that the mainstream test being done by labcorp, quest, stonybrook, and some other places, is a tainted tests. It was designed by a group of infectious disease doctors who had ties to glaxo which was working on a vaccine. These same doctors had patents on the tests. The CDC consulted thsee doctors on how to diagnose lyme. As a result, 2 decades worth of doctors have trained to believe in very narrow tests and diagnosis. At the same time, doctors out in the field, in suburban and rural areas, were seeing people who clearly had lyme and were not getting better and were treating them empircally and with longer term treatment most were improving. Many cures. Some people need antibiotics near indefinitely, because of the odd nature of this organism. It likes to live in nerves, and it forms three forms, a spiral, a ball, and a hard-crusted ball form. Only the first two can be touched by antibiotics. The organism goes through cycles, and the cycles are long. Typically, antibiotics are given for a couple of weeks because most bacteria divide and replicate several times in a few weeks, so they're all knocked out when dividing. This bug divides much less often, certainly not in a day or so, and it takes months to get it through all cycles and back. Also, it lives inside nerves, so it hides out, rather like HIV.

So, after reading up and talking to more doctors, it seems that those who know lyme well look at me as someone familiar, rather than someone odd. I'm no longer an odd case of something weird with many organ systems involved and many infections: I'm rather typical late stage lyme. Probably 20 years.

I began high dose doxycycline and had a typical herxheimer reaction. That means that the organism was killed in large numbers and I began very very sick for 6 days while the toxins were emptying into me. And then, better. But not well. I'll be going on IV soon, and doctors tell me not to expect less than a year of treatment.

So what's wrong with me:

1. chronic infections: lyme suppresses the immune system and various immune markers are off.

2. low White Cell Count: The tick that carries lyme usually doesn't just give you one illness, it gives you several. I tested positive for ehrlichiosis, which effects white blood cells. It's probably why my white cells are down.

3. I don't respond to vaccines by making IgG. usually, when you get a vaccine you make an antibody of the IgG type. If you don't, you're a candidate for IVIG. If you don't make IgG, the IgG test for lyme will not be positive, either.

4. Autonomic and peripheral neuropathy: incredibly common. Lyme LOVES nerves.

5. problems with fogginess, word finding, brain slowing:
Lyme LOVES the central nervous system too. SPECT scans often show decreased perfusion of the brain. I have decreased perfusion of the left frontal lobe.

6. This disease MIMICS other illnesses. Like syphillis, which used to be called the great imitator, looking at someone with lyme is like the blind man and the elephant. Doctors find one system having a problem at a time, and rarely see the big picture--everything is disturbed in some way.

7. Myosfascial pain: most people with lyme have diffuse myofascial pain and fatigue, and many are diagnosed with fibromyalgia or chronic fatigue. Worse, a good minority end up diagnosed with ALS or MS.

Finally, there are three labs known for their testing and accepted by ILADS, the lyme association. At least that's what I understand from a sticky on the lymnet.org site I am now frequenting.

These are:

Top 5 lyme/tick diagnostic labs in USA:

1. Igenex, Calif.;
2. MD LABS, NJ; www.mdlab.com
3. Central Florida Research Florida ..


NOTE: Stoneybrook, NYC, SUNY Stonybrook is NOT RECOMMENDED FOR "LYME" TESTING!!

Anybody here with idiopathic neuropathy should have blood sent to one of the above labs (I'm partial to Igenex, as the NY doctors I've met seem to prefer it). Their doctors must put not only lyme test on the slip, but also other tick-borne diseases. Local labs will draw the blood and send it to them, though from my experience it's best to have blood drawn early in the week, so it can be mailed, received, and processed before the weekend.

How am I doing?

I'm very tired, and only because of occasional normal days do I remember that there is a target, something I'm aiming for, in terms of feeling healthy. I felt healthy last spring when I was on Biaxin and Ceftin for a sinus infection, and I keep that in mind. Mainly I'm having myofascial pain, and getting dizzy when I stand up or move too quickly. But the neuropathy is stable, not progressing, and still, it's better from where it was 10 years ago, so all those sinus infections and antibiotics, and all those supplements, did do something. I get discouraged from the fatigue and muscle pain and headaches, but I know there's a light at the end of the tunnel, because finally, I have a real diagnosis, and all my doctors agree on it.

I'm chugging on.

See new sticky for more organized info.

Hi. I am sorry you have more to face but at least you got a dx so that is a light at the end of the tunnel. You are a strong and smart lady and I know will get through this. I hope now they can find treatments to help you. I like your sign of hope and it helps me feel that way too. Thanks and will look for the stickys

feel better
 

I am glad you finally got a dx, hope you start feeling better, don't get discouraged, and good luck

I am glad you wre finally diagnosed and I hope you get releif with your treatment. After a year, you will be a healthier Liza Jane!

I'm glad you've figured out the likely cause of your PN. I'm still "idopathic" and searching, but I'm in the process of getting a referral to the neuropathy center at UCSF and we'll see if they find anything we've missed so far.

I have a technical question about your Lyme's tests. Did any of your earlier tests turn up a positive for any of the "bands"?

I had a Western Blot done a year ago and it turned up a positive on one of the bands, but only one. So, I wasn't flagged as positive for Lyme's. (I can't remember which band and the results are at home.)

I was just wondering if everything had been "negative" previously and that Igenix finally found something -- perhaps due to the different way they do testing.

Thanks,

Ed

Ed, I can't tell you strongly enough that you MUST get blood sent to one of the good labs. The story of how the lab tests and the criteria got so convoluted is bizarre, but one where many different interests converged to produce a bad test the CDC approved. If your western blot had a positive band, I'd be worried. It means you've been exposed, if not to lyme, to an organism similar to it. Just because they only found one antibody at the time means nothing. The chinese menu approach (Have 5 positive bands all at the same time from this group of 8; but if 10 of group B are positive, well, we won't count them because we've got a patent....) makes no sense.

Igenex will tell you if you have any bands and which ones, line by line. And will test for co-infections. For a zillion reasons, many of us with lyme have co-infections. I do.

Do not let your doctor convince you to skip this test. Academic medicine hasn't caught on quite yet, though it's beginning to get around. If you have any other questions about lyme testing, go to the ILADS site, US or Canada, or lymenet.org.

I didn't end up this convinced without doing an awful lot of reading. Over at the lyme board----20,000 people are registered. Countless numbers talk about their pn. Their focus, however, differs from our focus here; their focus is on getting rid of the bug causing the pn.

Good luck. Get tested. http://igenex.com/Website/

Thanks for the advice.

Did any insurance help cover your Igenix test or did you just pay for it yourself, in the end?

Thanks,

Ed

My blood went to lots of labs. It was initially positive with my state lab of hygiene, while I had the EM rash.....then I took amox. and aborted the immune response. Then every lab besides Igenex was negative. I always show the docs the Igenex one, and they just brush it off.

I know the exact time of my Lyme infection, had an EM and still can't get IV.

I doubt I can even get orals.

The latest for me is a referral to hematology for my messed up T cells.

I hope the long term IV helps. Keep us posted.

LizaJane site a big help
 

Thank you, LizaJane, for all the information. I have been struggling with PN for two years and am still wonder if it is Lyme's related. I tested negative on the ELISA and the Western blot but your story makes me wonder about the reliability of local lab tests. Your *edit* site is incredible--I still don't know what tests were done and this site is a great tool for help in determining what was and what needs to be done. Thank you for sharing your story and your knowledge.