Neuro-lyme diagnosis?

[Jadis]

I've had a myriad of odd symptoms for the past 1.5 years. First began with raised nodules on my ankle that lasted several months. The next was frequent red eyes that were sometimes painful and so much mucous it obscured my vision. Opthomalogist diagnosed scleritis and eyelid inflammation. Tried steroidal eye drops that helped initially but later my eyes got worse. Later started getting odd tingling, buzzing, vibration sensations and migraine headaches. Also have burning in both of my feet. Brain MRI showed 2 punctate periventricular lesions visible only on axial FLAIR. CSF is normal with no bands and IgG index in range. Had VEPs because of the stabbing eye pain but they came back normal. I also have low grade fevers that come and go with frequent sore throats and persistent lymph nodes in my neck. Rheumatological work-up was unremarkable.

I was recently tested for lyme because I'm an avid hiker who's been all over the country on extended hikes. IgM blot showed a strong band for p39 and a band for p31. Lyme doc said these bands are very specific. IgG blot only showed p41, p30, p58 and was labeled "indeterminate" for p31 and p39 so technically a negative result.

My question is if this is lyme, shouldn't the IgG results be more remarkable since it's been over a year? Are these IgM results sufficient to diagnose as my doc said? I was prescribed minocycline but I don't want to unnecessarily take broad-spectrum antibiotics. Thank you very much for your time.  

[CCF-Neuro-M.D.-SH]

First of all, keep in mind that I am unable to diagnose you because I am unable to examine you, this forum is for educational purposes.    
   I am concerned that you have a persistent lyme infection with possible central nervous system involvement from the symptoms and story you relate.  Having a robust IgM response is generally found when the body is first responding to an infection.  This crude IgM response is then converted to the more efficient and specific IgG, which aids in clearing the organism from the body.  However, if your body gets stuck in the IgM phase and is unable to convert into an IgG, then the infection may not be effectively cleared.  Borrelia burgdorferi (the spirochete that causes lyme disease) is known to cause immunosuppression, which causes a chronic infection in some people.  Thus, your test results could indicate a chronic infection. To evaluate whether this is affecting your CNS, I would first recomend a SPECT scan of the brain.  Lyme can cause a vasculopathy that causes less blood flow to certain areas and thus dysfunction (which shows up on the SPECT scan, but not always the MRI).  I would also recommend sending the immunoblot tests on the CSF (spinal fluid) as well.  I think that minocycline is a good idea.  I am not sure that your headaches are related (secondary to the lyme) or if you just have migraine headaches.  Either way, I would approach this in a similar manner.  I would recommend a taking a 2 week trial on Indocin and starting a headache prophylaxis agent sucha as elavil, topamax or nadolol daily.
I hope this has been helpful.

[jan]

I emailed you. Did you get it?

[JCmcc]

Jan,
Can you e-mail me: jm.***@****


?

[jan]

I was misdiag with MS, too, but not for long.  I have 3 friends who have been and now are being treated for Lyme.  One suspects that she has Bartonella, also.

That's pretty exciting that the lesions and Lhermittes are gone.  Hopefully, in time the parathesias will go away, too.

I am being treated with a TOA free Cat's Claw, no synthetic antibiotics.  I felt real good about it when I read of drs. treating themselves for Lyme with it.  Some with the same brand (Allergy Research Group) and others with another.  Also, I found out that Cipro and the other quinolones (sp) are a synthetic of the active ingredient in the Cat's Claw.

Do you have a Yahoo ID?

jan

[JCmcc]

I hope to be cured.
I have the MS presentation. Lesions all over my brain and c-spine when I was first tested in Feb, 06.
Re-testing was done in the past two months and the lesions in my spine are gone. Brain stem/Corpus Collasum lesions in the head are gone, nothin anywhere enhances and there have not been new symptoms for over a year.
Lhermitte's Sign is gone.
The only symptom that remains, probably from perm. damage is parethesias.
I have been on antibiotics for 8 months, currently on a cocktail of Doxy 400 mg daily, Azithromax 580 mg daily, and Omnicef 500 mg daily.
I am sick of the drugs.
Not sure what else to do.
I am 28.
Negative Elisa, Positive thru Igenex, no Lyme Rash, but have the Bartonella Shoulder Markings-missed by doctors for years (hence, this could have been dealth with long ago).
Your opinions?

[AfterTheBite]

Fellow hiker... sorry to hear of your situation.

Might I suggest looking into the possibility of Bartonella.. a tick borne coinfection?  Nodules, eye problems, recurring sore throats, swollen lymph nodes... and especially burning in the feet are classic symptoms of Bartonella.  In some areas it is believed to be more prevelent than Lyme.  If you have this coinfection, it will need to be addressed so it doesn't become a chronic infection.

Feel better soon.

ATB

[JCmcc]

Hi Jan,
  Your post was refreshing. I am happy that you are secure in your diagnosis. However, I would seek a second opinion on a cure. For example, due to my knowledge, I believe that you may very well be cured. Do not accept absolutes, ever. It too is a wonderful that Lyme cannot hurt you anymore.
  A recommendation for you regarding putting website refs, you are not supposed to do that and if can get you in trouble on here. Why that is, I am not sure-but just a helpful note. I too have done it in the past.
  I just wanted to say, CONGRATS!

JCmcc.

[jan]

Oh, I didn't know about the link think.  I think that's crazy, because sometimes it's the best way to get more information.

Thanks for the congrats.  This LLMD cured my sis from late Lyme, but it didn't effect her like me.  She just seemed to have fibromyalgia.  I am praying for a cure.  I'll wait and see if I feel I need a 2nd opinion.

I think I forgot to say I had the Lyme rash, but I thought a bull's eye was supposed to be like a target (multiple rings).  Like I said, I tested 3x's before IGeneX anyway and it kept coming up negative.

jan

[jan]

Yes, it def. can be Lyme, esp. if you were tested by a lab other than IGeneX.  IGenex tests can come back marked neg, too, but then you have to read them and they tell you about indeterminates.  I tested 3x's by reg. labs always to be neg. I just got the diag by getting IGeneX and seeing a LLMD (lyme literate). She said I absolutely have Lyme.

It's been close to 10 yrs. now, so even though we treat the Lyme she says I won't be cured.  Things will improve and Lyme won't be able to hurt me anymore.

Here's a good site to go to and click on their symptoms page.  I did this and found 5 of my diagnoses listed and one that I was misdiag with (MS).  Then I had about 40 symptoms.

www.CanLyme.com

[JCmcc]

Dear, "Jadis"
   I am sorry to hear of your symptoms. Please be advised that I am not responding to you as a medical doctor and that my advice is purely educational and not to be considered professional or as a replacement from care from your physician.
   I have yet to see scleritis involved with Lyme disease and you may want to keep in mind that even if in the end you come to discover Lyme disease that presumed scleritis may be another problem entirely. After the steroidal treatmens did you return to your Opthomalogist and if so, what did he/she advise/do?
   The symptoms of tingling, buzzing, and vibration are called "Parethesias" and are usually the result of spinal cord compression; often times this occurs in LD patients and MS patients due to lesions in the Cervical or Thoracic spinal cord. The word "buzzing" strikes my memory of a strange, unanmed, phenomena where patients describe an internal sense of "vibration" or "buzzing." Is this internal for you? If so, this seems only to have been reported my LD and MS patients.    
    The sensation of burning is also a sensation called, "Parethesias" and is quite is non-specific and is seen in LD and MS patients, et al.
    The lesions you describe are non-specific and could be caused simply by unknown high blood pressure, though, with the symptoms such periventricular lesions are seen in MS and in LD. The highly specific bands would lead any good, and reasonable physician, to see that you probably are suffering with LD. The variable of being a hiker really does not help your case as you can get LD by petting a neighborhood dog and having a tick leap into your hair, etc. Assuming that the proper blood tests, set seq. have been attained regarding your fevers and other possible causes you may want to come to terms with having LD.

Good Luck!
JCmcc.
    

[burningpains]

Hi there.  Your results are similar to mine and I know a few others who have indeterminate results. Lyme is a clinical diagnosis.  I have always had swollen glands in my neck too.  You should be checked for mercury toxicity, because Lyme and mercury (and other metals and toxins) work synergistically in the body.  Did you have your CD-57 tested?  Was it low?  Often, people who are immunosuppressed don't create the antibodies that would normally be found people who have healthy immune systems, so if you have a candida problem, mercury problem, high viral load, etc...it's not surprising that your antibodies aren't numerous.  just like me!  Do a google search for lyme support groups and message boards where you can get a lot of good information.  A lot of mainstream doctors, unfortunately, do not realize how common Lyme, mercury toxicity, and candida problems are and say "it's just a fringe group."   Or "we don't have Lyme in this part of the country."   I think this is criminal and dead wrong.  Good luck to you!  I'm not saying 100% that you have Lyme, but it shouldn't be ruled out. 39 is a Lyme-specific  band.

[cat457]

Hi Jadis,
These stealth pathogens (that have evolved over 100 million yrs) can hide in the spinal fluid, muscles, tendons, etc... that's why it is hard to diagnosis in the blood... and they can mimic just about anything from ALS, MS, CFS to Fybro.
Go to www.betterhealthguy.com for a wealth of good info on possible Lyme diagnosis, treatment etc.  Also, check out:  www.publichealthalert.org... a very good lyme newsletter.
Here in California, Lyme disease has been reported in 42 counties.. and deer ticks in 56 counties.  We rival the east coast.
Best of luck in reaching a firm diagnosis, and course of treatment.