Possible Lyme Disease

Here's my story.

I've experienced headaches, fatigue, ringing in the ears since I was young (early teens). My friends and I used to go hiking in canyons with no protection (t-shirts and shorts) and I went on several retreats to the mountains (Southern California). I do not remember any tick bites, but I used to get scratches and gashes from going through brush, but I was young and didn't know anything about ticks nor did I care. If I ever got bitten or got a rash I would not have known or cared.

In my mid teens I began experiencing depression, memory problems, worsened fatigue, muscle weakness, but I pushed through it. Gradually through my early teens and 20s my symptoms grew in number and severity. Flash to 2010: I was put on a prescription of Doxycycline for acne and I began experiencing pain in my jaw and mucous membrane dryness. The doctor suspected an allergic reaction, but the problems did not stop after discontinuation of treatment. (could have been a herx reaction?)

Here are my current symptoms, which no doctor has been able to resolve:

fatigue
dryness in mucous membranes
depression
insomnia
problems with concentration, memory, brain fog
tingling, numbness in extremedies
daily headaches
muscle pain in shoulders and neck, weakness in exremedies, twitching muscles
nasal problems
orthostatic hypotension
sexual problems (libido, ED)
tinnitus
transient chest pain
shortness of breath
back pain

I have been to tons of doctors and done tons of tests and I only found out I have a hiatal hernia and idiopathic gastroparesis. At least that explains my gastro issues. However, after much reading online I suspected Lyme and I went to an LLMD and he did an Igenex complete lyme panel (with complete co-infection panel).

IgM Western Blot: 41kDa+
IgG Western Blot: 41kDa+++, 39kDa IND
Multiplex PCR: Plasmid Bb POSITIVE, Confirmed by Southern Dot Blot

Negative for all co-infections

The doc said I didn't have Lyme and ushered me out the door $1200 poorer.

I'm considering going to another LLMD to have these results reinterpreted, but I dont want to have to pay another boatload of cash for nothing.

Doc called me back, said I had Lyme disease after looking at the results again. Asked me if I had been being treated in the intervening 2 years since the tests. He recommended I get a Lyme culture test if I want to be sure.

My band 41 was +++

This is not a Lyme specific band, and could be the result of other bacteria.

Also, My LLMD is an ILADS member, and he was unequivocal in his diagnosis of Lyme. He asked if I had been getting treated or if I was taking antibiotics. Also he recommended the new Lyme Culture test. I'm considering the possibility that my PCR positive result was a false positive, as this method has been known to show false positives.

Have you read up on the new ispot test? If you aren't sure I wouldn't pursue treatment. We each have to make these sort of decisions for ourselves in regards to medical issues.

Yes the test are inaccurate. I never tested CDC positive....however

Beth off antibiotics - can't eat, can't sleep, can't function

Beth on antibiotics - can eat though not a lot, can sleep well, can go to work and function. And of course heart symptoms went away and after I went off abx I'm way better then I was even though I still have some issues that will take time to heal.

Someone asked how did I know the illness wasn't psychosomatic. My white blood cell count literally doubled during treatment (doubled!). My macrocytosis went away. And then of course all the clinical stuff but clinical medicine is sadly becoming a lost art and every citizen will suffer medical negligence because of it.

 

There is considerable disagreement about how long DNA from an organism can remain in the body detectable by a PCR assay. CDC says it will degrade in months. But you make a valid point: if I was never infected, how would the DNA have gotten there?

It seems, if the PCR assay is not a false positive, then I must have been infected at some point i the past.

My real concern is that the PCR assay is indeed a false positive.

Wow , we are/have expereinced almost the exact same symps. I have been fighting since about 2005, just had first IGenex test last month. It came back negative so for now my PCP says I dont have Lyme. My PCR was also negative .... there appears to be some disagreement about the length of time one might be infected undiagnosed and untreated and the impact on testing (less likelyhood of positive longer one has lyme). That said I did have four bands under IgM( 31 IND, 34 IND, 41 IND, 83/93 +) and IgG (41+).

So I'm still not sure I have Lyme and I understand wanting definitive proof in order to trust a doctor and possible treatment plan.

I am currently on Biaxin to treat another sinus infection and resulting cough so now that I know a little more about Lyme I am trying to record video each day of how I feel. First few days still felt horrible but today for awhile I felt a little better than I have in weeks. I only have 10 days of 500mg 2xs/day so I will also be looking for how I respond in the weeks after this short antibiotic rx. If I understand Lyme I should feel somewhat better towards the end of this antibiotic and then maybe feel worse for awhile after I guess due to the little buggers getting all stirred up after a brief antibotic treatment.

I am trying to see an LLMD but they are backlogged until next year.

I am surprised your LLMD first said you did not have Lyme then changed his mind after reveiwing the test results, that sounds more like a doctor who saw the words "NEGATIVE' CDC and IGenex and deemed you not to have Lyme but then maybe did some Google research and realized that negative is not necessarily negative. I just find the behavior curious if he/she is a Lyme expert. But maybe they were tired when they fisrt looked. Anyway what matters is now they bellieve you have it and I understand your hesitation believing you have it, that is where I am right now. Good luck, keep us updated, looks like we maybe traveling this path together. Did you doctor ever say why he/she changed their mind about your diagnosis? Might be helpful for those trying to understand IGenex test results to have some insight on why a doctor believes an IGenex test result like yours to say negative but still believe you have it.

@ Roxie, a culture test is like streaking a plate of bacteria. PCR is a DNA test.

I hope you feel better!