Lyme Disease Vaccination and False Positive?

Hi all,

I've been struggling with serious health problems since Jan 2012. I've communicated with doctors in many states and have been to seven different hospitals seeking a diagnosis (including the Mayo Clinic in MN) with no luck. Depending on the month, I've been told I have a diffuse brain tumor, vasculitis or another auto-immune disease, cerebral schistosomiasis (parasitic infection), and lymphoma. I've had a non-diagnostic brain biopsy, lumbar puncture, angiogram, countless negative blood tests, and full-body CTs. My brain MRIs, however, have been quite dramatic. I have a left-sided lesion that is relatively large, pretty scary-looking with contrast, and "rare" enough that one of my doctors joked to his resident that if "you take one look at her scan, you're surprised she's not dead."

The reason I'm posting to this forum is that my Lyme test has been positive both times I've been tested for it. BUT I was vaccinated several years ago with the vaccine that was pulled off the market shortly after its creation for being ineffective. The kicker for me is that the vaccine frequently gives false positives. My test is always positive in the "acute" stage and not the "chronic" one.

Does anyone know how long an "acute" case could last without moving into the chronic phase? Any information on the old vaccine? I've talked to several ID docs, one of whom first said he'd be willing to treat me with a month-long antibiotic but then decided not to when he spoke to "experts" (unclear who they were) who informed him about the false positive. My fear is that I could have lyme disease which is being ignored precisely because of the vaccine.

Aside from the brain lesion (which has stayed the same despite being on steroids for 6 mos and being off them for 4 or 5), my symptoms have been (again depending on the month):

-seizures (right-side progressive numbness starting with fingers & traveling up the body, down the back, down the legs to the feet, at which time I lose control of my motor skills & cannot speak)
-random, patchy numbness on both sides of the body
-vertigo/labyrinthitis
-complicated migraines w/ seizure-like symptoms (used to just have typical ones with aura, nausea, pain)
-extreme fatigue
-forgetfulness, foggy head, concentration problems, memory problems
-arthritis in lumbar
-allergic to everything
-frequent, painful canker sores (before first seizure, not since)
-onset of random bloody nose (started last year)
-a new lisp (been asked by 4 different people if my tongue was swollen/had cottonballs in my mouth)
-sensitivity to smells
-lightheadedness, dizziness
-etc

In general, I do not have joint pains or achy muscles. I've been told my lesion does not look like a typical cerebral lyme lesion. (Can lyme lesions be only one-sided?) Unclear which symptoms are drug-related, lesion-related, or disease-related.

To make things even more complicated, I was in West Africa with the Peace Corps from 2007 to 2009. There were definitely ticks there (I had to pull some off my cat), but I was told there's no lyme disease in Burkina Faso. (But doubt there have been many studies re: lyme disease done in that part of the world since malaria & HIV are the focuses.) I was sick frequently with fevers and stomach upset, etc, but once I went to the capital with what I thought were spider bites on the inside of my thighs; the medical officers said they were actually a virus, but they lasted a while and looked like the typical lyme spider-bite rash.

Anyway, if anyone's still reading this post, I would like to be treated for lyme just in case. Is there a downside? I would much rather walk around with a picc line than suffer unnecessarily for years. Any insights would be EXTREMELY appreciated!!!!

Thanks very much, and sorry for the length of this post!

Sara

That is interesting. If I were in your case - I would contact the manufacturer of the vaccine. If you google "Concerns Grow Over Reactions to Lyme Shots" you will see why. The manufacturer is actually GlaxoSmithKline - got bought out. There was a class action lawsuit but it doesn't look like anything came of it unfortunately - too hard to prove.
If you tell me whereabouts you live some interesting names came up for doctors that were finding rxns from lyme vaccine in patients. I could at least email you those names. A lot in the northeast. I would say that would be your best bet. You have to activate the email in your profile.

Opugirl,
Trying to cover some extra 'ground' today since I was out most of the day yesterday, so I haven't looked this up - Doesn't that vaccine only make one or a few bands show up as positive? If that's the case, then depending on which bands Undiagnosed is showing a reaction to would show whether or not they have an infection or it's just the vaccine.

Undiagnosed
Welcome to our forum! I'm so glad you've found us!!! I'm so sorry that you are going through such a tough time right now!

If you haven't yet, please do read through our "New to Lyme? Start here! " thread, as it's full of really great information, informative links and pdf's, symptom lists (as Lyme rarely travels alone!!) and even a list of questions that can be asked of any doc that you are seeking treatment from!

Of course, with the symptoms you have listed, I would say that you need to investigate this carefully, as those are some signs of an active Lyme infection. Since you've traveled to Africa, it means that you could have easily picked up an African strain of Lyme that is not being tested for here in the US. There are over 300 different strains of the Lyme bacteria in the world - with over 100 of them being in the US alone. Current testing at best only tests for 4 or 5 strains.

Forgive me for using an abbreviation there, but I was running out of room!! LOL!!

Tx means treatment(s).

I see a 'Master' Traditional Chinese Medicine doc who also is a 'Master' Acupuncturist and also a Western herbalist for the last 2 1/2 years. Although for my Lyme infection, we used only Western herbs - with good success. I've just restarted my Lyme treatment last week as a matter of fact.

I've had these infections since I was 7 years old - I'll be 50 in 6 months. I didn't get adequate treatment for my infections until I tried using abx back in 2007 - and they almost killed me as I was very ill with having lost 1 organ and all my teeth to Lyme and the other infections by then. By the time I had found my current doc, my adrenals were starting to shut down, my thyroid was seriously affected with Hashimoto's and I had lost yet another organ (gall bladder). So it was little wonder that I couldn't handle the harsh effects of abx. I needed much more 'whole body' support.

There are actually quite a few different herbal/natural protocols that are very effective at treating these infections if you are prone to go that way! Let's see if I can name them!! LOL!

Buhner's - buhnerhealinglyme.com/

Zhang's- www.sinomedresearch.org/

Cowden's - www.nutramedix.ec/ns/lyme-protocol

Klinghardt's - www.klinghardtacademy.com/Lyme-Disease/

Then there's a lesser known one that I used that can be found here: www.mistymeadows.org/wendy.htm
The pdf is titled: "Lyme Disease; A Practitioners Experience and Discovery", by Wendy Snow Fogg. I used the "Chronic Tonic" that can be found on page 77. My Practitioner had me make the tea slightly different, but I used all of the ingredients in the amounts shown. If you would like to know more about my treatment, please just ask!

For Bartonella, I used whole leaf Houttuynia. I specify whole leaf because the whole leaf tea tastes a whole lot better than the powdered herb!! LOL! I had fantastic results from this.

As is said here, there is no 'one-size-fits-most' treatment. We each need a treatment that is unique to us, as our bodies all have different weak points and strengths.

I would agree with you about the fact that there are many strains of many infections that docs are totally ignorant of. We don't know what we don't know. Although this most certainly doesn't mean that it's easier to get treatment elsewhere! We have members from many different countries here, and some even travel here to the US for treatment.

Awww, Golly gee, Shucks! Now you've gone and embarrassed me!!! LOL!!! **kicks the dirt with toe of boot**

Although, that's precisely why I do all that I can to help others!! There is no good reason why someone would have to go through what I've been through!

We have such wonderful, caring members here that also are here to help, and that's what makes this such a wonderful forum in my opinion! It's what got me through when I first started searching for answers! This is the first Lyme forum I joined, and although I do some reading on other forums, I have always come back to this one. It's 'home' for me.

Let's see if we can get you some answers!! Sent you an email this morning!