I thought I would start by giving you a little of my health history.
I had an attack of brain inflammation in June 2011, at a time of great stress in my life, with 10 of my 12 cranial nerves impacted. A subsequent 'sensory' relapse in January 2012 - with numbness/tingling in my left hand and two further brain lesions on MRI - led to a diagnosis of relapsing and remitting Multiple Sclerosis (MS) on 30 May 2012 at a hospital in London, UK. I have had other sensory relapses since. On 31 August 2012, I then received a positive serology for chronic Lyme disease from Infectolab, part of the Borreliose Centrum, in Augsburg, Germany to which I had sent my blood from London.
My current situation is as follows:
- My MS doctors in London, together with a London-based infectious diseases specialist, tell me they are not obliged to take my German Lyme disease test result into account, as they believe that the UK testing - which came back negative for me last year - is adequate.
- However, my experience and research have led me to believe that the UK is not up to speed on Lyme disease and its treatment.
- In particular, my trusted nutritionist attended the 2012 International Lyme and Associated Diseases Society (ILADS) conference in Austria and told me that doctors present there, who came from all over the world, said that UK testing for Lyme disease is very inaccurate, meaning lots of false negative test results are possible.
- It was at this conference that my nutritionist came across Infectolab, and discovered their testing was far more accurate, hence my decision to use them.
- I am fortunate to have a very good GP here in London, and she accepts the German diagnosis in spite of my negative UK Lyme disease test results. As such, she said she could give me 14-21 days of doxycycline but is unable to prescribe more in light of the UK Department of Health and Health Protection Agency guidelines in this area.
- However, the German doctor whose lab diagnosed my Lyme disease said that 14-21 days would not clear the Borrelia Burgdorferi (BB) Lyme bacteria. A California-based Lyme Literate MD (LLMD), who is treating a friend with Lyme, reiterated this view.
- My MS doctors are keen for me to begin Beta Interferon treatment (probably Avonex) for my MS as soon as possible. This medication is an immunomodulator, and so may affect my ability to fight infection. Assuming I do indeed have Lyme disease, the MS treatment would allow this infection to progress.
- I therefore would like to treat my Lyme disease first, before reconsidering the MS drugs.
My MS has been described as atypical for a number of reasons:
- My neurologists tell me that most of their MS patients experience inflammation of one or two cranial nerves in a single attack, not 10.
- My cerebrospinal fluid (CSF), when tested in July 2011 was atypical of an MS sufferer, and atypical of your average person. (As Lyme disease wasn't part of the picture at that stage, my CSF wasn't analysed for the presence of the BB Lyme bacteria.)
- When I was put on steroids to dampen the brain inflammation in July 2011, it induced chronic fatigue, from which I still suffer. I know fatigue is a common MS symptom, but certain doctors have commented that this was an unusual reaction to steroids, which invigorate most people as a side effect to dampening inflammation. As my immune system will have been suppressed by the steroids, in the same way that it could be in the future by the MS drugs, any infections in my body will have been able to run riot. Perhaps my body was trying to sleep as a form of self-preservation, as the BB Lyme bacteria were multiplying.
As chronic Lyme disease can cause neurological damage, perhaps this would explain some of my symptoms, and the various anomalies of my case. In any event, it is my hope that, with treatment of the Lyme disease underway, my symptoms will improve, if not wholly, then at least partially.
The idea that the aetiology of MS could be an infectious agent is nothing new, but I would be very interested to hear from anyone else with a diagnosis of both Lyme disease and MS. Would you recommend your current LLMD, assuming you are being treated by one? Also, please may you tell me of any drugs (for Lyme disease, MS, or both) you may be on, and for how long you've been on them?
As I am dissatisfied with the UK's approach to Lyme disease treatment, I am presently deciding between going to the Borreliose Centrum in Germany for my treatment, or to the Californian LLMD, with whom my friend is very pleased. However, I am still keen to explore as many avenues as possible to get back to health.
Any help you may be able to provide would be gratefully received. Thanks!
I'm still need to re-read your story. Initially though I wanted to comment that where I live in the states it would not be out of the ordinary at all to have lyme as an add on to my MS diagnosis. It's just that common.
Many have come along through the years with the same question. Believe it varies from locale to locale. We have a lot of woods and deer, deer ticks, etc.
Will get to the rest of your post here shortly...In the meantime, I'm sure others will stop by with thoughts.
I do not have Lyme, so I don't really meet your criteria; however, I can offer some comments regardless..
One of your major premises is not correct. The MS drugs do not compromise or otherwise weaken your immune system. They 'modulate' it, which is why they're called immunomodulators. They work on only very limited and specific parts of the CNS. And for whatever reason, many of us seem to have exceptionally strong immune systems, a subject discussed here in detail not long ago, though that's really not the point. I believe that all other things being equal, there is no potential harm in treating Lyme and MS simultaneously.
Second, I would not put too much stock in the outcome of your lumbar puncture. MS indications in LP are not necessary, and many doctors are not even performing this invasive procedure when MS is suspected. Other factors are much more important. MS is a clinical diagnosis after all, so lab tests play a limited role.
Finally, if you haven't already done so, I urge you to join MedHelp's Lyme forum. There are some extremely knowledgeable people there, who can advise you about tests and treatment.
Thanks to you both for taking the time to comment.
Shell, I look forward to any other comments you may have to make in due course.
essdipity, you make an important distinction between immunosuppressants and immunomodulators - thank you.
Steroids, being immunosuppressants, are contraindicated in the treatment of Lyme disease. As steroids are often used to dampen inflammation after an MS attack, if one also suffers from Lyme disease, the latter condition will be worsened by their administration.
The main frontline MS specific drugs recommended (like the Interferons and Glatiramer Acetate) are, as you say, immunomodulators. However, I have now read of a number of people with both Lyme disease and MS who have said that the immunomodulators worsened their Lyme disease considerably.
I personally wouldn't be able to tell you where my Lyme disease symptoms start and my MS ones end. However, my current thinking is that I would rather deal with my Lyme disease first, to the extent that I am able, before commencing with MS drugs which may - according to others with both Lyme and MS - compromise the Lyme if it goes untreated. If I ultimately pursue this course of action after further research, I shall post again about any improvement in my symptoms.
Perhaps people have experienced a worsening in their Lyme disease on immunomodulators because their MS has been misdiagnosed, and so they are being unnecessarily medicated in this regard.
As we cannot be sure of this, however, I should perhaps change the seventh point under 'My current situation' in my first post to say the following:
"My MS doctors are keen for me to begin Beta Interferon treatment (probably Avonex) for my MS as soon as possible. This medication is an immunomodulator, and so may affect my ability to fight infection. Assuming I do indeed have Lyme disease, the MS treatment COULD [not would] allow this infection to progress."
If anyone is able to comment on why immunomodulators might worsen Lyme disease though, I would be keen to hear from you.
essdipity, thanks for your second point too. JackieCalifornia, in the Lyme forum, also made the point on my equivalent chain there (which I see you've also kindly commented on now) that Lyme is not commonly located in CSF. CSF, therefore, seems to have its limitations in both MS and Lyme diagnosis.
I shall post another comment on the Lyme forum in my equivalent chain to reflect my response to the immunomodulator point.
Are you in a position to do a thorough consultation with both the LLMD and a well-qualified MS specialist? I would hate to favor one disease over the other here in our speculation - because as Shell points out, it is quite possible to have both.
Lyme is also considered one of the mimics of MS and vice-versa, and you want to verify that you do indeed have both Lyme and MS.
I am so sorry you are facing such a question and a trail of doctors and tests. I hope you will come through here often and keep us up to date how this progresses as well as ask your questions.
I was treated with Suprax for 3 months for lyme, I also had a bad "attack" of my ,as of yet undiagnosed autoimmune disease at the same time.Since then Ive had to have a number of IV antibiotics so Im not concerned about the lyme-.
One thing Ive come across in years after is , while many doctors acknowledge lyme- they say that say that pretty much ALL the lyme tests arent accurate- when they see my positive lyme it means nothing to them, So the people I know that had serious lyme had to spend months at a clinic in 'Lyme', Conn,
OR at least a place that there whole purpose is to treat lyme. Even people with definite lyme - would have neg and positive tests. One thing for sure is make sure the lyme dr dont forget your MS and vice versa.
A microbiologist friend suggested I read the following article, which states, amongst other things, that the MR imaging white matter appearance of successfully treated Lyme neuroborreliosis and MS display sufficient similarity to suggest a common autoimmune pathogenesis for both:
The idea that the aetiology of MS could be an infectious agent is nothing new, but it's a thought-provoking read all the same.
I have MS but lyme standards I tested positive in the on panel dn on the other was off my one so tested fals even tho i have all those other bands in me that aint suppose to be... geez that just meake me mad as can be and would explain a hell of alot more of what if going on;;;;;;; goodluck to you
I'm sorry to hear of the uncertainty of your test results. Could you possibly try to get tested again? I hear that Igenex lab in CA will receive blood from Europe, so I'm sure they would from PA too. People living in the US who post in the MedHelp Lyme disease community say it's a good lab, so maybe it's worth investigating.
I'm off to Germany next week for a first consultation with an LLMD there.
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