MS/Lyme Diagnosis

[patientx]

Ok, I've gone through some old posts, and I know this topic has been discussed (sometimes hotly) before.  I don't mean to re-hash the debate, but maybe I can get some advice for my particular case.  From what I've seen, there are some pretty helpful people here, including at least one MD.

First a quick clinical history.  I am 37 years old, in pretty good health.  Around mid-April of this year, I started getting some numbness on the soles of my feet after a run.  This continued, and new nuerological symptoms appeared, including numbness and tingling in the legs and a burning pain in my left arm.  The strangest symptoms were a feeling of "cold shocks" or being splashed with cold water.  These would move around to various parts of the body and would last for only a second.  Also, I noticed a strange sensation in the trunk/leags, where if I tapped this area, I would feel a reverberation in both legs.  In general, the symptoms have been with me since they started in April, with maybe a few days max where I experience nothing.  Different symptoms come and go, but some form of numbness/tingling is always there.

I went to my PCP who did an office exam and ordered a slew of blood tests (almost all normal) along with brain and c-spine MRIs.  Included in the blood tests was a Western blot for Lyme from one of the major labs, which did not return any positive bands.  The MRI showed white matter lesions in the brain, so he referred me to a neurologist.  In the meantime, my PCP ordered the Igenex lyme test.

The neurologist reviewed the MRIs and did an office exam, which was normal.  Also, a VEP and nerve conduction test were normal.  He suggested having another MRI in a month to look for new or growing lesions (he also wants to see the results on a closed machine, as the first MRI was done on an open one).

Around this time, my results from Igenex came back with the following results:  IgM, 31 kDa (++), 34 kDa (IND), 41 kDa (+); IgG 31 kDa (IND), 41 Kda (+).  Based on this, my PCP (who fancies himself "lyme literate") says "you have Lyme disease," and prescribes 4 months of Ceftin, Biaxin and Plaquenil.
After I showed him the Igenex results, the neurologist said I should see an infectious disease specialist.  As I expected, the ID didn't want to consider these results, and only offered to re-run the Labcorp lyme tests.  He did say I could take the Ceftin for a month if I was inclined, but he didn't understand the Biaxin or Plaquenil.

Now, I've read online the controversy surrounding Igenex, and the whole lyme community vs. mainstream medicine.  So, I was skeptical about the positive test results.  But, I thought I could try the antibiotics and see what happens.  Wrong!  After one week I got really nauseous and started throwing up.  Also, weird things started to happen with my vision.  I couldn't get hold of my PCP, but my neurologist told me to stop the antibiotics.  The nausea is now gone, but sometimes I still have trouble focusing.

Now, since I learned the antibiotics aren't so benign, I'm in a little bit of a quandry.   Should try starting up the ABX again, maybe with a different one from my PCP, while my neurologist continues the MS workup?  Maybe trying only the Ceftin?  (I think 4 months is excessive, so I would only do the treatment for 1 month).

(I'll continue this in the next post.)

[sllowe]

Hi patientx,

Welcome to our group.  I'm sorry for what has brought you here, you must not know which way to turn.  I don't know anything substantial about Igenix, except people say that it is the "only" lab that can truly rule lyme in or out.  You probably know more since you've read the controversy.

If I were in your situation i would not know what to do next either.  Since the Neuro didn't order it from that lab in the 1st place, I think I would come right out and ask him what he thought of the lab - couldn't hurt.  

I would also move forward with the MS workup, sounds to me that the Dr is continuing to run tests even though many so far have come up negative.

be well,
Shelly

[Diggster]

She is right, and I am sorry for not having any answers I just wanted to give you some support.

good luck on your journey..... try and have a great weekend.

[essdipity]

Hi, Mike and welcome to the forum. I can't say much of anything about Lyme diagnosis but others here can. Fortunately discussions on Lyme here have remained sane and pleasant, so I hope you'll benefit by sticking around. Weekends are often slow, and with the summer here even slower, but keep checking in because I know the knowledgeable people will respond when they can.

ess

[Diggster]

This may not be any help at all however, when I was first going the the dx'g process of MS I was told I had Lyme disease.  I will be honest and tell you that it has been 3 years and dont really remember the tests just that it was positive for Lyme.  Long story short, didn't have it.
The bottom line is I feel like you need to always go with your gut feelings.  The dx'g process takes forever and that just takes patients but I would have just taken that first answer I would have never found out I had MS.  I think you are doing the right thing by following up with the neuro.  We know our bodies better than any doctor and we do not need a degree in the field to know that.
I just became a memeber here and do not have all the lingo down or even know what some things are, like Igenex.........bottom line, do your research, ask your questions and go with YOUR gut.  Always remember you can never explain exactly what you are feeling at anytime and they have never experienced it so they technically have no clue.

I hope this helped some, I wish had advice about the Igenex but I am going to have to go look that up when I finish this comment. LOL!:)

[patientx]

(continued from above).
Does anyone have an opinion on Igenex?  Putting aside an absolute "positve" or "negative" result, I'm a little bothered by the bands that showed up.  I don't know if this is accurate, but I've read that both 41 and 31 bands can cross-react with other viruses or bacteria (in fact Igenex's own website talks about a confirmation test for band 31).  Also, if the B. burdoferi bacteria is causing the CNS lesions, wouldn't this indicate late stage disease, with a positive result on the IgG blot?  These questions make me doubt the Igenex results.  Also, my PCP's reaction bothers me a little; "you have lyme," not "some bands showed up, you might have lyme," or "let's do further testing."

Sorry about the length of these posts.  Thanks in advance for any responses.

      Mike