Has anyone else been diagnosed with Lyme Disease and Multiple Sclerosis?

Hi all!

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!

[JackieCalifornia]

Welcome to MedHelp Lyme --

You give an excellent history ... no one here (that I am aware of) if medically trained but we are glad to share our thoughts with you based on our own experiences and readings.

I don't have time at the moment to write a lengthy response, so here's the short version, and others will also weigh in, I am sure:

-- it is possible that in addition to Lyme, you also have other diseases the same ticks also carry (in the US, the incidence of other infections along with Lyme is about 50%, meaning half of all Lyme patients also have at least one other tickborne disease carried by the same ticks that bring Lyme).  Testing should in my nonmedical view be considered for those other infections, based on your symptoms.  A good LLMD would know to do that.

-- A couple of weeks of doxy is insufficient to treat Lyme except in the very early stages of infection, which it sounds like you are well past, so no loss there that your UK doc won't treat.  

-- Fatigue is a common symptom of Lyme, so your post-steroid reaction of tiredness is likely due to the Lyme ramping up.

-- Lyme is not commonly located in CSF, and tho some nonLLMDs rely on CSF to rule out Lyme, an LLMD would not likely say that is the last word.  

-- I have read the accounts and reports of quite a few patients who were initially diagnosed with MS, but then the diagnosis was corrected to Lyme and possible co-infections.  I have not read anywhere of someone having both MS and Lyme at the same time, which does not mean it does not happen, but I would think it is rare and would not assume until you have consulted a good Lyme doc (who will also understand how to look sideways at MS and could give you the differential on whether you have both Lyme and MS) that you actually do have MS.  Your MS docs are apparently not looking at you except as a candidate for MS, and there is a fair amount of misdiagnosis of MS when it is actually MS, so I would not yet assume the MS docs are correct.  But I am NOT medically trained; just going by the law of averages.

I am in California and if you want to send me a private message (PM) through this system, I would be glad to tell you if I have heard of the doc and what I have heard if that is useful to you.  (In the upper right corner of this page, click 'inbox' then click 'send' and put your message there to JackieCalifornia, and it will show up on my private inbox on this system.)  

Note --->>> We do NOT post LLMD names in the open here to avoid harrassment by the medical authorities who do not 'believe' in Lyme.  

-- I have heard good things about the Augsburg clinic and there are others here who have been or are being treated there.  You may get some feedback from others on this site.

Unless you are ready to move to California for a year or make perhaps monthly trips to California for check ups, you might be better off at Augsburg.  I know my LLMD had patients who flew in for consultations and treatment, but don't know from how far they came.

-- As to what meds we are each on, it varies considerably because this is an area of medicine in flux.  Also it will depend on what co-infections you have and what your dr's preferences are.  I had babesiosis and Lyme, and was treated first for 'babs' and then for Lyme.  

-- I am not familiar with Infectolab that the Augsburg clinic uses, but there are others who post here who have been treated at Augsburg and can perhaps comment.

That's the short response -- let us know how we can help -- and good for you for pursuing all of this!  I applaud your perseverance.

[JackieCalifornia]

Ooops, typo above in my reply:

"Your MS docs are apparently not looking at you except as a candidate for MS, and there is a fair amount of misdiagnosis of MS when it is actually [insert here:  NOT] MS, so I would not yet assume the MS docs are correct."

[JackieCalifornia]

... and one more thought:

I do not know if it would complicate your diagnosis and treatment if your LLMD is Calif-based but your infection originated in Europe.  I don't know how the periodic testing would be done -- would the US labs look for Euro strains, or would your US doc be comfortable relying on Euro lab work, since the doc may not be as familiar.  It's something I would look into before deciding on where to be treated and tested. It may not be an issue, but better to know ahead of time.

[jx28]

JackieCalifornia,

Thanks so much for your prompt response - it is really helpful. I can't believe it's only your short response, but I eagerly await any other gems that may occur to you in due course. Your words of encouragement are also much appreciated. And thanks for the heads-up about the etiquette on the site too! As a new user, I can use all the help I can get.

I shall message you privately with the name of the CA-based LLMD. However, as you say, I do have my concerns about travelling so far for treatment, especially with my symptoms. I am only considering it because my friend is satisfied, and because I believe the LLMD could treat me remotely on Skype after the first one or two consultations in person.

As you say, I would be keen to hear from anyone who's had any experience with Infectolab / the Borreliose Centrum in Augsburg.

On the point of co-infections that you raise - in case it helps to add further colour to my story, in addition to my Lyme disease test results, various labs (the German lab, the UK National Health Service (NHS) lab, and a private London lab) have tested me for a number of other things, including some common Lyme co-infections. My results to date are as follows:

Common Lyme co-infections:

• Bartonella - NHS: IgM less than 20; IgG 'weak' at 64 - my Bartonella IgG level is to be re-tested by the German lab later today, 14/1/13* - the NHS discounted this result, but I am concerned as to why any Bartonella antibodies should be present in my blood, hence my desire to have it retested in Germany;
• Mycoplasma - NHS and private London lab - both negative;
• Rickettsia – German lab: negative; and
• Coxsackie – German lab: IgM negative; IgG positive, showing historic infection.

[*Later today, my blood is being sent from London to the German lab which is also testing me for Ehrlichia/Anaplasma IgM and IgG Antibodies; Chl. Pneumoniae Antibodies; and Yersinia IgG and IgA Antibodies.]

Miscellaneous:

• Epstein Barr Virus - NHS: IgM negative; IgG positive - reflects the fact I had glandular fever a decade ago;
• Coxiella – NHS: negative;
• Psitacci - NHS: negative;
• Serology for Schistosomiasis, Filariasis, Strongyloides, Amoebiasis, Trypanosoma cruzi and Syphilis – private: negative; and
• Toxoplasma - private: IgM positive; IgG positive (blood taken 31/10/12) - meaning an acute, or recently acquired, infection with this parasite.

Thanks again for all your help.

[JackieCalifornia]

(Are you feeling a little ... anemic??  All that blood drawn!  Ouch.)

Responded to you via PM with my comments on docs.  Yes, I do run on.  It's one of my better qualities.

I don't know how MDs generally handle testing and treatment of people who travel a great deal, esp continent to continent, to account for the variations in strains in different places.  It's a very good question to pose as you interview various MDs and clinics.

I don't see babesia on your list of tested-for infections above.  It is a parasite like malaria is, only carried by 'Lyme' ticks.  It's something I would bring up with your docs, now and later, just to be sure the bases are covered.

Interesting about a recent toxoplasmosis infection showing in your test results ... that could account for some of your misery.  The CDC website says:  "Toxoplasmosis is considered to be a leading cause of death attributed to foodborne illness in the United States. More than 60 million men, women, and children in the U.S. carry the Toxoplasma parasite, but very few have symptoms because the immune system usually keeps the parasite from causing illness. Toxoplasmosis is considered one of the Neglected Parasitic Infections, a group of five parasitic diseases that have been targeted by CDC for public health action."  So ... might want to keep that on your radar screen for possible treatment.  

(The list of the fearsome five is:
    Chagas Disease
    Cysticercosis
    Toxocariasis
    Toxoplasmosis
    Trichomoniasis)

[Ricobord]

Such a well written history! Obviously, you still have enough cognitive ability to write well! :)

Since your so called MS is atypical, definitely do not take anything to suppress your immune system. I suspect you don't have MS. Lyme can be a surprisingly good mimic of it. Some Lyme sufferers have even met the full diagnostic requirements for MS. You can google "Lyme misdiagnosed as MS" to see the various examples and medical articles written on this topic.

The fact that you developed chronic fatigue after a round of steroids is also something that points towards Lyme and away from MS. I was given a shot of steroids for my supposed asthma (turns out it was Babesia) and I got much worse. I ended up in the ER a few days later when I just couldn't get enough oxygen. They gave me oral prednisone. By the fourth and last day of it, I felt terrible. I'd gone from a mysterious chronic fatigue to feeling like I'd been run over by a truck. The cascade of symptoms continued rapidly over the next 3 months until I finally figured out through online research that it had to be Lyme. I never did convince any of my doctors, though. They were too enslaved to my negative test results. Only the LLMD diagnosed me with it after an IGeneX positive Western Blot (which was completely CDC negative.)

I tested "not negative" for Bartonella at IGenex. I think my result was 80.  The extensive neuro involvement and GI problems I had are consistent with having Bart as a coinfection. It was treated with different meds than the Lyme and I definitely improved. We used my anxiety as a measuring stick on whether to continue or stop treatment. We treated it directly for 6 months and it seems to be gone now.  Given your extensive neural involvement and your Bartonella results, there is a very high chance that you have it and will want to treat it. (Rifampin and Levaquin seem to be the top choices.)

It is still in dispute as to whether ticks can transmit Bartonella to people, but two dozen other insects can, though. It's possible you had a latent case of Bart before the Lyme that didn't cause symptoms. It, too, could have flared up when Lyme arrived.  You can read Burrascano's diagnostic hints and treatment guidelines on the ILADS websites. He is the one who first noticed that Lyme patients with Bartonella had a high number of neuro symptoms.

Toxoplasmosis can also cause neuro symptoms. It can be quite nasty.  It is believed that a large percentage of the population carries it, but their immune system holds it in check.  When the immune system gets compromised or suppressed, such as with chronic Lyme, then it can flare up into illness.  You will definitely want to treat it.

I have also heard that testing, diagnosis, and treatment of Lyme in the UK is completely inadequate. I have seen many very unhappy posts on message boards from UK residents who can't get diagnosed or treated in the country.  There is another person often on this board who is familiar with the situation and says you can't get proper treatment in the UK. There just aren't any doctors with the experience to do it, as the NHS greatly limits their ability to treat outside the guidelines.  

I had a set of symptoms that is similar to European neurologic Lyme caused by Borrelia Garinii. (North America only has Borrelia Burgdorferi, which can cause arthritis. Europe has B.B., also.). Although I am an American, I got my Lyme + coinfections in Australia and b.garinii is one of three species they've positively identified there so far.  Aussie Lyme is primarily neurological with many cranial nerves involved.

I tested completely CDC negative in a blood screening test, a CSF antibody test, and a Western Blot.  I did the Western Lot at IGeneX, which was a good thing, as they use two strains in their testing, not just one. They said I was positive.  I learned that most Aussie patients also test CDC negative.  My personal belief is that when you have a genetic strain or even another Borrelia species than what is used in the lab, then it might not match up enough for a "positive."

A doctor in Australia who is an early believer in endemic Lyme has mentioned Infectolab on his website, along with IgeneX in CA.  I have seen other recommendations for Infectolab, and it seems to my non medical mind that they know what they're doing.

Most test kits used by labs in the US use the Shelter Island strain, B31 of b.burgdorferi.  The test criteria has never been validated in other geographic regions of the US that have different strains, let alone in other countries or with different species!  I believe (but I am not positive) that the UK just decided to use what was developed in the US.  I believe British labs also use the same test kits used here with the B31 strain.

I have yet to hear of a single person with extensive neuro Lyme who was cured with a short course of Doxy.  Even here in the US, mainstream docs know that symptoms involving the central nervous system require parenteral antibiotics, usually IV Rocephin. Of course this is only if you test positive and then they'll only give you 2-4 weeks.  

Some people with the level of neural involvement you describe have required over a year of Rocephin, which we can only get from an LLMD brave enough to flout the guidelines. I ended up with Bicillin shots.  I just took my last one a few days ago. Over an 11 1/2 month period of time, I took them for about 9 months. I am now just on oral meds as the Lyme is mostly gone. I am finally dealing with the Babesia. After testing negative three times, I finally got a clinical diagnosis in late October.

Sorry...I am going on too long!  I hope this post made sense and isn't disjoint.  

It sounds like you have done good research and have thought things through.  That is great!  Those are the first steps to getting well.  I hope you stick around on the forum to let us know where you decide to go. We'd love to hear about your experience!  We all learn from each other.

[mojogal]

Hi,
I can't write a lengthy response because of my illness but want you to know I was misdiagnosed with MS and several other illnesses but it was Lyme, Bartonella and Babesia.

I agree with everything said above, you do need longer therapy with Abx.
I know how frustrating it is to be told you have one illness when its really another. Chances are you just have Lyme.

[essdipity]

Just a small side-note from a longtime member of the MS forum--

The various MS drugs do not suppress the immune system. They are immunomodulators, acting only on specific areas of the central nervous system.

All other things being equal, which they seldom are, there's no evidence that MS drugs cannot be taken simultaneously with Lyme treatments.

[jx28]

Thanks to you all for your comments above - they're incredibly helpful, and I want to take time to digest everything.

JackieCalifornia and Ricobord, you've given me lots of good food for thought.

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 change in my symptoms. With any luck, this change will be for the better!

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.

Also, are there any more people out there with diagnoses of both Lyme disease and MS who have started on the MS immunomodulators? If so, how have you reacted to them?

Mojogal, thanks for your contribution. The latter paragraph may have particular significance to you. If you're able, I'd love to know if you were medicated for (what was thought to be) MS, and how your body reacted to this medication.

Thanks again everyone!

[JackieCalifornia]

Interesting comments from essdipity --

I am not medically trained and wouldn't know an immunomodulator from a carburetor, but I personally would be extremely cautious about assuming that there is no effect on a Lyme patient by taking immunomodulators rather than immunosuppressants.

It would all depend, I am guessing, on the mechanism by which the modulators work in the body, and given that Lyme's mechanisms are still be unraveled by science, there is much not known.

My own LLMD is by training an immunologist, and it may be advisable to consult such an individual (tho there may not be many of them schooled in both fields) who can evaluate the competing issues, as you suggest.

[mojogal]

Jx,
I can tell you that I was told I had Lupus as well as MS and I took steroid medication. I wound up in the hospital on a breathing monitor, close to death. Most people won't have such a strong reaction but it should be known that Lyme and steroid type meds don't mix unless under strict supervision of a Lyme aware doc.
I hope that helps.

[essdipity]

Some people here may not be familiar with some of these terms. The MS immunomodulators, also known as the DMDs or disease modifying drugs, are quite distinct from steroids.

Steroid treatments are often used to treat MS flares, though many patients avoid these for various reasons. This usually means that the flare will last longer without steroids, but there is no connection between steroids and the MS drugs.

[JackieCalifornia]

You are right, I am not familiar with immunomodulators, but given the misery that Lyme patients go through when treated inappropriately (however inadvertently), I thought it worthwhile to point out that these medications should be approached cautiously.

The difficult is that much of the medical community believes that after a few weeks of antibiotics against a Lyme infection, any remaining or recurring symptoms are the result of the immune system overreacting to now-cured Lyme infection.  Therefore the appropriate response to such an 'auto-immune' reaction is to slow it down, by the use of steroids.  This is a lovely theory, but (1) Lyme bacteria have the ability to sequester in the body in areas of low blood flow (such as cartilage) where the medications cannot as readily reach, and (2) Lyme bacteria reproduce at a very slow rate (similar to leprosy and tuberculosis), so that the usual few weeks of antibiotics are inadequate, because it is when reproducing that the bacterium's cell wall is disrupted and makes the antibiotics most effective, so the antibiotics to be effective need to be present for a longer period of time than for most infections -- standard treatment time for TB is 18 months, for example.  

Thus Lyme symptoms may continue long after the standard short course of antibiotics, but mainstream medicine says that no, the infection *must* have been eradicated, and any remaining symptoms are an over-active response of the immune system, thus the appropriate treatment is to suppress the immune system.

The issue then is whether immunomodulators have that suppressive effect.  You indicate that modulation is different from suppression, and my comment in response is that one should not assume that is settled science without further investigation.  Many of us have been misled by well-meaning MDs who truly believe tamping down the immune system is the right thing to do, and if immunomodulation is or may be immunosuppressive, we need to be aware of that, since our MDs may not be.

From CCFA [dot] org, the website of the Crohn's & Colitis Foundation of America, which I found in a google search for 'immunomodulators':

-------------------------------------------------------------------------------
"Special Considerations

"Immunomodulators reduce the activity of the immune system. In so doing, they also decrease the body's ability to combat infection. Be sure to report any incidence of fever, chills, or sore throat to your doctor. 

    
"Blood tests should be performed frequently with all immunomodulators to check for effects on the bone marrow, liver, and kidneys. Blood pressure and kidney function need to be closely monitored ...."
-------------------------------------------------------------------------------

No, the CCFA is not a medical journal, but at the moment I don't have time to go digging further, and this popped up in a google search for "immunomodulators".

Just fair warning to anyone with Lyme who considers taking immunomodulators if they are told it will not suppress the immune system:  do some more research before proceeding.  See an LLMD.

The chemical reaction by which an immunomodulator works may be different from that of an immunosuppressive drug, but that does not mean the immunomodulator does not also have a suppressive effect on the immune system.  Two separate issues.

Thank you for bringing this to our attention, and I hope you don't feel disrespected.  We just have a difference of opinion based on this brief literature search.  I don't have time at the moment to do more research, but this is a start for others to pick up on.

[essdipity]

I too don't want to go into a long thing about immunomodulators here, but I invite you to check out the MS forum for a great deal of info on this. The idea of immune system suppression has been discussed exhaustively, and some of our members could be considered experts on this.

I can only assure you that no one with MS wants to risk infection because of the DMDs. Perhaps they are different from other immunomodulators, I don't know, but we see few concerns about infection risks. The big negatives surrounding some meds are site reactions from the injectables and flu-like symptoms from those that are in the interferon class.

I'm certainly not suggesting that anyone with Lyme use an MS drug; I'm only saying that suppressed immunity is not an issue for MS patients using a DMD.

[jx28]

Thank you all for the continued helpful comments & insights - it is greatly appreciated. Mojogal, I'm so sorry to hear of your suffering. I hope you're getting stronger all the time.

In case it's of interest to anyone, I emailed a German doctor who carries out blood tests at Infectolab, part of the Borreliose Centrum Augsburg (BCA), with the following question:

When you test for Lyme disease at your lab, do you look for both European strains as well as North American ones?

He responded as follows:

Yes, we look for all pathogen strains. So US patients and Igenex send me also samples for doing tests (and many are positive there!)

[sllowe]

JackieC - A distintinction between immune modulators and immunesuppressants was made for clarity, so readers would be aware of the difference between the two. Regardless, use of steroids is a discussion that should take place between doctor and patient because individual cases of both lyme and MS can vary greatly.

No one here is a practicing doctor, so suggestions like "...not yet assume your doctors are right.." are opinions and personal advice. Just a friendly reminder.  

While this is not a Lyme forum, Ricobord has come on here from time-to-time to offer information on the disease for those who it would best serve. And, we thank her for that. Both MS and lyme can be treated, but it is important to treat each disease process properly. And, they can both be treated.

Jx - I know you know both diseases are quite possible, however, there are areas of the world where lyme and both MS are more prominent. There is some useful background information here.  But, I will dig through the forum to see if I can find some instances of MSers on disease modifiers AND successful treatment for lyme.  

-Shell

[sllowe]

I had no-idea this discussion was moved to the lyme forum. My apologies, it was originally in the MS forum. Please take my comments in that light. Had I know, I would not have addressed the issue. Just didn't want any hard feelings on our forum :) Have a good day all.
-Shell

[jx28]

Apologies for any confusion, Shell, I started the chain in both the MS & Lyme communities. Because of my dual diagnoses, I wanted my message to go out to as many relevant readers as possible. Your points are both welcomed here, & appreciated.

Many thanks.

[sllowe]

Clearly the hole in my head is getting bigger, lol

[mojogal]

JX,
Thank you. I couldn't walk before and now I can even walk without a cane.

A big concern for me is to be misdiagnosed with an illness. My pharmacist told me that a friend of hers spent 20 years in a wheelchair being told she had MS. Somehow she learned about Lyme and went to an LLMD. She is now walking and getting much stronger. She so regrets the years lost in that wheel chair.

I just like people who think they may have MS or Lupus or other diseases as I was told I had, to explore things. Since mainstream doctors don't believe in Lyme, its good to research and ask questions as you did.

I was told i had so many different illnesses at the same time, I knew that it was wrong and if true, I should have been written up in some medical journal for getting all of them at once.

I hope you get your answers. Let us know!

[JackieCalifornia]

You say:  "No one here is a practicing doctor, so suggestions like '...not yet assume your doctors are right..' are opinions and personal advice. Just a friendly reminder."  

I am very careful to state often here that I am not medically trained, so the lecture is not necessary.  

I am concerned however about the attitude I perceive in some who appear to hold that immunomodulators are just fine in Lyme because they act a certain way in MS -- speaking of "opinions and personal advice."

Lyme is an infectious disease, not an autoimmune disease.  That fact should not be overlooked or dismissed or minimized.  Lyme patients who have been treated with immune suppressants do not do well, in my readings.  Whether that applies to 'immunomodulators' is not clear to me, and that is what I was flagging for others who may come here.  I was not telling anyone what to do or not to do, because I find that broad, one-size-fits-all answers have caused huge problems for many Lyme patients who post here and elsewhere.

Just a friendly reminder back to you.

[sllowe]

Like I said, I thought I posted on our MS forum.

We give friendly reminders all the time - especially where differing opinions regarding doctors and MS are concerned. Sorry this was taken out of context. That was not a lecture by any means.

Sorry I posted on your forum. The question was posted in both, and I somehow saw this one 1st.

[JackieCalifornia]

No worries, thanks for the follow up.

We have lots of ill and confused people coming here, so when there is a comment left dangling without context, I think it's best to clarify.  I don't know about MS, but one of the effects of a Lyme infection is confusion and memory problems, which makes sorting through the mess the medical community has made of Lyme even harder to deal with.  

I wish there were better coordination between MS and Lyme docs, and more interaction on the scientific side -- there is such a tremendous split in the medical/scientific community about how serious Lyme is or is not, whether there is or is not a follow-on autoimmune reaction after Lyme treatment (LLMDs say there is not, and that continued symptoms mean inadequate treatment of the bacterial infection due to particularly odd characeristics of the Lyme bacterium), and on and on.

We patients are definitely all in this together, one way or another, no matter what we have.  Thanks again for your comments.

[jx28]

Hi all!

I hope you're well. I thought I'd give you an update.

I got my latest blood test results back today from Infectolab, part of the Borreliose Centrum Augsburg.

They showed I have also got Bartonella henselae/quintana infections and a Borderline Yersinia infection.

My chl pneumoniae IgG antibodies were positive, but as my corresponding Elispot-LTT test was negative, and my IgA antibodies were low, and not in the reference range, it is unclear if I have a chl pneumoniae infection too. (Apparently, most people with such an infection have a positive Elispot-LTT test and a high IgA reading as well.)

My Babesia and Anaplasma/Ehrlichia tests were negative.

The doctor at Infectolab said an analysis of my symptoms is, of course, very important, & this is why a consultation in person would be necessary should I choose to go to Germany for my treatment. (All of my interaction with Infectolab & the BCA to date has been remote.). However, he has also suggested carrying out, for added certainty, a control test of Yersinia-antibodies in 2-3 weeks, the Yersinia-Elispot-LTT test, Yersinia in the stool, the Bartonella antibody control and Bartonella PCR tests.

I am now going to have to decide whether I bother with these further tests, or whether I just head to the USA or Germany for treatment. I'm conscious that I should really get onto antibiotics as soon as possible, though I do have some concerns...

Given my previous positive chronic Lyme disease diagnosis with Infectolab, and the fact that my Mum and Sister have also been experiencing ill health - whilst they have not, to our knowledge, had extensive neurological involvement like me, my Mum has arthritic-like symptoms in her legs, with very painful joints and is sensitive to the touch below the knees, and my sister has a host of long-standing symptoms, including chronic fatigue, headaches, memory problems and GI complaints - I suggested they be tested for Lyme disease with Infectolab as well. Today, their results also came back and showed both actual and chronic active Lyme infection!

One of my London doctors had justified his decision to ignore my own Lyme disease test result from Infectolab on the basis that all results from these labs abroad produce positive readings. I, in turn, dismissed his view as being cynical and narrow-minded. Now, however, with all three of us testing positive for chronic Lyme disease, the doctor's words are echoing in my head, & I am thinking about going elsewhere for a second opinion.

That said, my Mum recalls being bitten by something as a child in the 60s and developing a bullseye rash! Could it really be the case that she contracted Lyme disease then, & that my sister and I contracted it congenitally? If that were the case, surely my sister and I would have been iller at a younger age. Or did we only fall very ill when we experienced external stressors that dampened our immune systems?

It has been suggested by my trusted nutritionist that the Lyme disease infection is as a result of our shared environment. I live in a London flat most of the time, though I do return to the suburbs - where my parents and sister live, backing onto a golf course, with the cat - fairly regularly. (I mention the cat in case he is of relevance regarding my recent Bartonella result. I would say though that he only adopted our family after my first, major attack of inflammation of the brain.)

If we were all to be treated with antibiotics abroad, would we risk possible re-infection shortly thereafter when we've returned home? Have you all found that your immune systems recover sufficiently after antibiotic treatment to keep the nasties at bay, even if reinfection is a possibility?

Lastly, I note from my previous Lyme disease test results that I was positive for bands 41, 83 and VlsE-Bg. I think I'm right in saying that the Bg stands for Borrelia Garinii, which is a European strain, and would also account for my extensive neuro-involvement.

Apologies for the stream of consciousness post! These new results mean the situation is seeming even more complicated to me.

Your thoughts, as ever, are welcomed and gratefully received.

[mojogal]

Hi,

My brain is very problematic ( Lyme/ bartonella brain) so I hope I have understood this correctly. If not, I apologize.

In my opinion, you can be reinfected even if you are on antibiotics. I know of friends that have been reinfected while on abx. You would need long term antibiotic treatment for a cure. I have been treated over a year and still have a long way to go. Are you planning on staying in the US or Germany for a long stay?

[JackieCalifornia]

Thank you for sharing your information with us --

I am impressed with the long-distance medical advice you are getting already -- it's forward-thinking rather than indifferent and regressive, as too many of us have ourselves experienced.

A few quick responses to quotations from your message -- and remember I'm not medically trained:

"I am now going to have to decide whether I bother with these further tests, or whether I just head to the USA or Germany for treatment. I'm conscious that I should really get onto antibiotics as soon as possible, though I do have some concerns..."

I would do the additional tests so that you have a full picture of the situation.  If you wait to test till you get to your treating MD, you would have a time lag in getting the results back.

"my Mum and Sister have also been experiencing ill health - whilst they have not, to our knowledge, had extensive neurological involvement like me--"

Lyme seems to manifest differently in different people -- in either more physical (and fewer neuro) symptoms, or the other way around.  Of course since we each experience illness differently, it's hard to know who has what exactly, and until Lyme is parsed more specifically, it's a bit of a guess, so I wouldn't spend too much time worrying -- the MDs can be more specific.  The big divide seems to be between more neurological symptoms vs more physical symptoms.

"[Test results for my mother and sister] came back and showed both actual and chronic active Lyme infection!"

So glad they were tested!  Lyme is a misery more widespread than is realized, I think.

"One of my London doctors had justified his decision to ignore my own Lyme disease test result from Infectolab on the basis that all results from these labs abroad produce positive readings. I, in turn, dismissed his view as being cynical and narrow-minded."

That's the spirit!

"Now, however, with all three of us testing positive for chronic Lyme disease, the doctor's words are echoing in my head, & I am thinking about going elsewhere for a second opinion."

I'm not a medical or scientific person, but to my understanding, false negative results are far more common than false positive results, and the tests are meant to help with diagnosis, not determine it.  Go for a second opinion if it comforts you, but know that you can readily find an MD who tells you that you are healthy.  You can go to a second LLMD instead, tho, and see what you hear, if you are so inclined.  There's nothing wrong with that.  I am not familiar with the tests used in Europe (and Germany especially), so I don't know how reliable they are, but I would think they are quite sturdy.

"That said, my Mum recalls being bitten by something as a child in the 60s and developing a bullseye rash! Could it really be the case that she contracted Lyme disease then, & that my sister and I contracted it congenitally? If that were the case, surely my sister and I would have been iller at a younger age. Or did we only fall very ill when we experienced external stressors that dampened our immune systems?"

Yes, yes and yes.  All possibilities.  We have had many visitors to this site who spend much time and energy trying to figure out exactly when and where they were bitten, in an effort to provide some experiential back up to the diagnosis.  Partly that is due to the confusion in the medical community, so we look for double reassurance; partly it is the neuropsych effects of the infection that makes it harder to figure out what might seem a less daunting an analysis in a healthy person.

And one thing that is often overlooked or disregarded is the possibility of multiple infection times.  You could have been bitten ten years ago, but your immune system held it down, until you were bitten again five years ago, and then you began to feel a bit poorly, and then you were bitten last year, and then it hit you hard.  Unless there is need to parse which strain of an infection one has (if the treatments vary by strain), it really doesn't matter.  

I understand the desire to know when all the misery started, but it's a question with no real answer.  If you came back from the tropics with malaria, would you worry about which country you got it in on which day?  No, you'd just get treated for malaria.  Same with Lyme, tho the mysteries surrounding Lyme prevalence, diagnosis and treatment make it difficult to accept with equanimity.  Denial or wishful thinking:  it's normal.

Instead, focus on getting well.  If you don't trust the tests, have different tests run by a different facility.  Nothing wrong with a little peace of mind.  But do it and don't delay.

"It has been suggested by my trusted nutritionist that the Lyme disease infection is as a result of our shared environment."

Absolutely.  Ticks are everywhere, and they seem to be spreading ... or perhaps the ticks were always around and we thought nothing of them because they themselves were not yet mass carriers of Lyme.

But to your nutritionist's comment specifically:  your infection was not caused by sharing an environment with your family; your infection was caused by you and your family sharing an environment which hosts ticks.  City parks, grassy farms, suburban lawns, and pets and wildlife galore:  the ticks do not know they are not welcome, and so they go wherever their little legs carry them.  It's how epidemics begin and spread:  a naive population with no immunity, and a carrier (tick) with no natural predator.  Boom.

In the US, we have a raging argument about deer.  Some years ago, deer hunting was determined to be inappropriate, and severe hunting restrictions were put on.  The result?  Millions of deer with few natural predators remaining (not too many mountain lions around any more), hunters forbidden to hunt the deer, and an expanding population of humans moving ever farther out into what used to be empty countryside.  Deer/car collisions are quite common these days, it seems.  And where there are deer, there are deer ticks, and thus Lyme ticks, and thus Lyme.  And us.

"If we were all to be treated with antibiotics abroad, would we risk possible re-infection shortly thereafter when we've returned home?"

Yes, but that is no reason not to be treated.  You can take precautions to have your garden (called 'yard' in the US) sprayed regularly, and to do 'tick check' when bathing, and to have an LLMD on speed dial if you need antibiotics, and most importantly to monitor how you feel ... because many of us never saw a tick nor a bullseye rash.  I didn't.  And Lyme is everywhere, here, in Europe, in the UK.

"Have you all found that your immune systems recover sufficiently after antibiotic treatment to keep the nasties at bay, even if reinfection is a possibility?"  Not sure I understand your question, but reinfection is indeed possible, from what I read.  Just as one can get strep throat (from streptococcal bacteria) again and again in life, one can get Lyme again too.

Sorry to run on here, but you ask many important questions.  It's excellent that you are getting answers from your MDs, even if the answers are ones you would rather not hear.  But it's the first step to treatment and thus to being healthy again.  Go for it.  And keep us posted!

[jx28]

Thank you both very much for your responses.

Mojogal, were I to go to Germany, I would stay for some weeks initially, & then hopefully return home to be treated remotely. Were any problems to arise, I would then return accordingly.

JackieCalifornia, please don't apologise for running on. I find your input incredibly helpful, and it has enabled me to distill my own thoughts further.

I really appreciate all the support. I'll give you another update soon!

[Ricobord]

It sounds like you have done your homework and are asking very good questions.  Jackie's answer is excellent.  I'll just add a bit from my own experience.

On testing: False positives for Lyme/Borreliosis are quite rare.  A low quality lab would be more likely to produce false negatives than false positives.  It is hard to mistakenly get a reaction (to show bands on a Western Blot) to something that isn't there.

Doctors here use the same story to discredit IgeneX, a specialty lab in California. The IDSA cannot explain all the patients who test negative on the CDC two tier testing protocol and then test positive at IGeneX, so they just dismiss the lab and its tests as "unreliable."  This is without knowing anything about the testing they do.  IGeneX does more advanced testing and uses two different variations of Borrelia, resulting in more bands showing up.  

Most labs just use a mass produced, narrow focused test kit that uses the B31 Shelter Island strain of b.burgdorferi.  But Lyme antibodies are always evolving and rotating as the bacteria tries to hide from the immune system.   A Lyme patient can show different antibodies every month on a Western blot. And if your particular bacteria doesn't match the test kit closely enough, you might not test "positive."  The criteria was defined among a narrow I group of patients in the New England area.  They have never been validated in other areas where there is greater genetic diversity, and it was developed only for b.burgdorferi in the U.S.

It is quite common for multiple family members to have Lyme Disease and other tick borne infections.  I have seen stories of four or five members of a family having chronic cases.  Since Lyme comes from a tick bite, people in the same geographic area can be exposed to the same vectors.  You don't have to go hiking or camping to get bit by a tick.  Cats can bring them in the house and you can get bit while sitting on the couch watching a game.  I know someone who killed a tick that was crawling right towards him while he was riding in a coworker's pick up truck.  The coworker had been out in the woods over the weekend.

The iceman found in Austria was determined to be over 4,000 years old.  They also found b.burgdorferi in his remains. So yes, your mother could have aquired it in the 1960's. it turns out it isn't a new disease at all.  it is a very old disease.  Only our knowledge of it is new, and still developing.

B.burgdorferi is more likely to cause the bulls eye rash and arthritis.  B.garinii is more likely to cause neurologic Lyme with extensive cranial nerve involvement.  I am confident I have b.garinii (acquired in Oz) as my presentation is consistent with Aussie Lyme (they have confirmed they have b. garinii there, along with at least two other species).

It is entirely possible that you have b.garinii and your Mum has b.burgdorferi.  Some animals in the wild that carry Borrelia have been found to carry both species at the same time.  A study done with mice found that when infected with both, the mice were sicker, even though they had an overall lower load of spirochetes than other mice just infected with one. It is almost like the two species were battling for turf.

I also have Bartonella Henselae.  I tested positive (officially it was "not negative) only on the antibody test.  On the PCR, I was negative.  PCR tests on blood are less likely to give a positive than the antibody tests.  

Personally, if I were you, I would run to the best LLMD I could find to start treatment. I'd spend my money on treatment, not more tests. You could keep testing and waiting, but you may never get the absolute, incontrovertible "YES, YOU HAVE LYME" test result that doctors seem to want these days.  To me, with ANY Lyme specific band and a slew of otherwise unexplainable Lyme Disease symptoms, you have Lyme.  (I am not a doctor and cannot diagnose anyone.)  if you really want test confirmation, go for IGeneX. From what I have read, the three best labs in the world for tick borne disease testing are IGeneX, Infectolab, and Mikrogen.  Any other lab would be a step down from what you've already done.

Even your extensive neuro involvement indicates Bartonella. My anxiety really declined and I could focus more clearly after we treated my Bart. (Rifampin and Levaquin). Extensive GI issues with Lyme are another hallmark of a Bart coinfection. Given your sister's GI involvement, it is a strong possibility she also has Bartonella.

I recommend the article by Virginia Sherr called "Bell's Palsy of the Gut."  When I read it, I practically yelled, "She's describing ME!"  Up until then, doctors just looked at me quizzically (and dismissively) when I talked about all my GI problems.  They were completely unaware that Lyme could affect/infect the gut.  

Sorry if this is a bit disjoint.  It is past my bedtime and I need to sign off for now. I guess what I'm recommending in a nutshell is to go start treatment. US LLMDs have waiting lists, some as much as 4 months. Augsburg is much closer for you and is highly regarded. If you can get in there quickly, I'd suggest that.

You can only take so many meds at once, so I encourage you to start treatment for Bart and Lyme and then see how you progress.  I tested negative for Babesia on three different tests.  All were negative.  My doc finally concluded I have Babesia 11 months into my treatment when my Lyme progress stalled and my shortness of breath still hadn't resolved. I am now 3 months into Babs meds.  It was clear from the awful herxing that I do indeed have it.  

One step at a time.  You don't need to have all the answers before you take the first step, just enough to be reasonably confident that that step is your best choice.  You can always take a step back if something doesn't feel right or you don't feel comfortable with a doctor. It sounds like you do your research. I can relate.  Just don't let yourself get "paralysis by analysis." ;)

Keep us posted!

[JackieCalifornia]

Excellent commentary from Rico above.  

Her point about not waiting for more test results is valid ... it's a judgment call in my untrained view, because without knowing the full complement of infections you have, the treatment approach may be off sequentially.

It appears Rico wasn't treated for babesia till her docs realized there was something else going on because she wasn't getting better at the rate expected from the Lyme treatment.  That happens -- it's because the mixed-up mess of infections are hard to parse even by the best docs, and thus somethings aren't tested for initially because they were obscured by symptoms from other infections.

To balance that, my doc (based on symptoms) tested me for Lyme and babesia (and maybe some other things I don't recall now), and I came back positive for Lyme and babesia.  Treatment was first for babesia, because it's a straighter shot to cure, unlike Lyme, which can be a meandering course of treatment.

So my experience being what it was, I personally would follow that same path again, to get tested for the most likely infections based on symptoms and then begin treatment in the most efficient approach, such as babs (a straight kill) first, and then on to Lyme (a longer and sometimes less direct treatment).

The many variables in each of our cases calls for an individualized approach.  Talk with your doc about his recommendations for order of battle, and whether to complete testing before embarking on treatment.  Keep us posted!

[jx28]

Ricobord and JackieCalifornia,

Thanks both so much for your messages - they're incredibly helpful, as always.

Ricobord, thank you for the article recommendation as well - I look forward to reading it.

As suggested Jackie, I posed my dilemma to the German doctor, and he told me that the BCA's normal approach - what he called their 'working principle' - is to meet for a first appointment to discuss my symptoms and former reports. This would last 1-2 hours and so I could be in and out of Germany (from the UK) in a day. (My fatigue, however, may mean an overnight stay is required.) The doctor can also carry out any outstanding tests - like those suggested for Bartonella and Yersinia - after this consultation.

Treatment courses are decided upon and discussed with the patient at a second appointment two weeks later, when these results are ready. At this time, the patient is prepared for treatment (ECG, liver, kidney, ultrasound).
This second appointment normally takes place on a Monday, and the patient starts treatment the same or the next day.

I have asked the doctor to get his assistant to send me all the relevant details, and am awaiting to hear back. Hopefully I will then have a clear idea as to how soon this process can be commenced, should I choose to progress my care with the BCA.

I shall keep you posted as to how I get on, and thanks again!

[jx28]

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 pathogenesis for both:

http://www.ajnr.org/content/30/6/1079.long

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.

[JackieCalifornia]

Interesting idea.  I hope it discusses the possible reasons that a SPECT scan shows different results in Lyme vs MS -- that could perhaps cast doubt on the common cause theory.  Will give it a read.  Thanks for posting --

[Ricobord]

Some doctors have observed and written about how many MS patients previously had Lyme. While some docs believe that Lyme could possibly trigger ALS, others think it could possibly trigger MS.  There is a wide variety of MS presentations, so it's possible there are multiple triggers of MS.

[jx28]

As always, good to have your insights both - thank you.

Thanks for bringing the SPECT aspect to my attention, JackieCalifornia. The article does still distinguish between the conditions as far as MR Imaging is concerned: it says, amongst other things, that 'unlike MS, cervical cord pathology and occult brain involvement in normal-appearing white matter are infrequent findings in patients with LNB'. However, I shall have to look through it again for SPECT references too! (From my reading elsewhere, I believe S Donta has some info on SPECT as well, so I'll have to uncover that next.)

And talking of other authors discussing the MS-Lyme disease link, Ricobord, I've found the following article in particular:

http://www.aaem.pl/pdf/aaem0024.pdf

It is a little old now, as it's from 2000, but I've emailed the authors to ask for their thoughts, so will let you know if I hear anything back.

And you're absolutely right, Ricobord: there seem to be as many variations of MS as there are people suffering from it, and so I wouldn't be surprised at all if there are multiple MS triggers. It is something of an umbrella diagnosis, after all!

[JackieCalifornia]

.... and yet MS is treated with steroids, yes?  and the patients do not decline as they would if they had a bacterial infection and were given steroids.

Does this then give purchase to the IDSA in their view that persistent Lyme is an autoimmune disease?

I think not, but the contradictions here are a house of mirrors.

Would an infectious disease flip into an auto immune disease in some people (--> MS) but not in others (persistent Lyme)?

I suppose it's possible, but I got my medical degree from a gumball machine, so that's as far as I can take this line of thought.

[Ricobord]

There is a very recent publication where MS researchers were surprised to discover that MS is primarily a disorder of inflammation.  So their next question is, "What is triggering the inflammation?"  I hope they find answers quickly!

Because Lyme can infect nervous system cells and inhibit or damage them, it can cause symptoms that look much like MS.  I suspect it's the same situation when Lyme mimics Lupus, Sjogren's Hashimoto's, et.al.  I definitely don't understand enough of biology and the immune system to know what kind of overlap there is between chronic Lyme and autoimmune problems.  But it makes sense to me that an intracellular infection could result in immune cells attacking the types of cells infected, and then getting confused and attacking healthy versions of those cells.

We have so much to learn!

[JackieCalifornia]

That outcome would fit nicely with the IDSA approach that if you still have symptoms of Lyme after a couple weeks of doxy, then the infection is gone and your immune system is overreacting and attacking your body.  

Therefore, Lyme is an autoimmune disease, in the view of these docs.  But I would be vewwy vewwy careful (as Bugs Bunny would say) following that line of thought, because of what happens to Lyme patients who take steroids.

Given that these patients (treated briefly with antibiotics, then given steroids for continued symptoms) do not do well on steroid treatment (given what I have read in my unscientific way), I would tread carefully in this direction.

[mojogal]

Everyone has heard my near death experience when I took steroid and wound up on a ventilator in the hospital in Tx. Tread carefully.

It's so frustrating when I hear of people who are outside as part of their jobs, being diagnosed with MS and not even wanting to test for Lyme. I rather have the treatable illness.

[jx28]

Hi all! Apologies for the delayed response - I've been feeling pretty wiped out of late.

If you wouldn't mind sending me - by PM, if you prefer - that recent paper, Ricobord, I'd very much like to read it. I've already devoured the Sherr article, & found it most illuminating so I'm passing it to my sister.

Hear, hear, Mojogal & JackieCalifornia.

You're definitely correct to reiterate the disconnect between the reaction of MS and Lyme disease sufferers to steroids, JackieCalifornia. If it is a severe 'MS' attack of CNS inflammation, most doctors do advocate steroids to dampen it initially. (Whilst, in theory & with any luck, the inflammation would settle of its own accord in time, steroids are given to speed this process along.) That's what happened in response to my first major 'MS' attack &, whilst the steroids did help to settle my facial paralysis and slurred speech and, to some extent, my optic neuritis, I still reacted badly to them, as they induced the chronic fatigue from which I continue to suffer. (But that's just me! As we know, Mojogal had a far worse experience on steroids.) Next up on the 'MS meds menu', I am being offered one of a number of frontline disease modifying drugs ('dmds'), which are immunomodulators, & which I have not yet started. As discussed above, I want to investigate further the consequences of my positive LD serology first.

Forgive me for blurring the lines between MS & LD. I was just hoping to share my research with anyone else who may come to this chain. I'm not sure if I'm now repeating what Ricobord was saying, just employing different language, but it has occurred to me - again in my non-medically trained opinion - that it could only seem like an autoimmune process is in train when in actual fact the body is attempting to attack the BB pathogen. However, as the BB bacteria are now intracellular, & the body's own defence mechanisms are of somewhat limited sophistication, it just appears as though the body is attacking itself, when it is in reality trying to attack (alien bacteria that have settled in) the myelin sheath, as would be the case in MS, for example. This reasoning does not mean, in my mind at least, that Lyme disease is an autoimmune condition. Perhaps people labelled with MS at one point or other, like Mojogal and me, who do react badly to immunosuppressants, do so because their bodies are also playing host to a large bacterial load.

Until we can be sure of the science, however, I guess my hypothesising is in vain.

This line of thought does lead me to ponder though the causes of all those other conditions out there with no currently known aetiology. Whilst I have just claimed the body could be lacking in sophistication, my stream of consciousness has led me back to the conclusion that it still remains a very complex place indeed!

Should anyone stumble across this line of thought and want to read more on topic, I would recommend you look at the chain very kindly started by JackieCalifornia entitled 'Lyme is not an 'autoimmune' disease''.

[JackieCalifornia]

Ah, but Jackie here can always be wrong!  As I remarked again recently, my medical license came out of a candy machine, and in fact I never made it through the organic chemistry class in college (dropped it twice, I think), so you're dealing with an opinionated ignoramus here.

I titled my previous post 'Lyme is not an autoimmune disease' mainly for posterity, in case someone innocently searched online for ... say, 'Lyme autoimmune disease' and didn't see that there is a dispute in the medical community on some of these issues.  I apologize for any harshness.

And yes, indeed, there indeed be mechanisms in the body that operate in a way so as to be or at least seem 'autoimmune' in nature .... won't it be a glorious day when Mother Nature finally gives up all her secrets on this miserable illness!

Your commentary above is quite interesting and thought-provoking.  Were that the nonLLMDs as subtle in their thinking.

[mojogal]

If anyone gets the Lyme Times, there is a recent article where they mentioned that so many Lyme patients are being misdiagnosed with MS, Lupus, CFS, Fibromyalgia etc, I was misdiagnosed with all of those things and more for 20 years.

There was a another article in there about an insurance company that would not cover a women's Lyme claims thus causing her death. It made me sit up and take notice!

My wish would be that one day, Lyme info and LLMD's would be easily found so that  misdiagnoses would not be the norm.

[Ricobord]

On initial look, I am not finding that article about the recent MS study.  I will look more.  I saw it via a link someone posted, so I need to go find that.  I will also look for a page I know of that lists about 20 articles referencing how Lymemimics MS.

Lyme can indeed mess with the immune system, it is just not fully understood how. Multiple doctors who know Lyme well have mentioned it.  Steroids do indeed reduce inflammation, which is a cause of a number of Lyme symptoms. But at its core, Lyme is a bacterial infection, just a much more advanced and complex bacteria than anything else we've seen before.

You'll definitely want to get Anti-Lyme antibiotics before you take any MS meds. There are too many stories of people reacting badly and "failing" MS meds before they finally figured out it was Lyme.  Odds are good that you'll feel some herxing on antibiotics, eecially since you've been sick over a year.  A herx will be your confirmation of Lyme.

[Khiba]

I have been lurking and reading and find all this incredibly thought provoking. I have been diagnosed with MS but am wondering if its real.. I started a new thread in this form called MS, Lyme and how to find out.

I hope y'all feel better, and thank you for your very instructive and thoughtful answers.

J

[jx28]

Always good to read you, JackieCalifornia, mojogal and Ricobord.

mojogal, thank you - I shall look for that Lyme Times article.

Ricobord, thank you too - I know you're going through a rough patch at the moment, so please don't worry about uncovering those articles for me. I just hope you feel stronger soon :)

And Khiba, a very big welcome to you to this thread. I've read your own one too, and am sorry to hear of your experiences. May I say, though, that you sound very positive? Such an outlook is both inspiring and invaluable, so keep it up! :)

I'm pleased you've found this thread useful, and I can see that you're already getting responses in yours. I've been benefiting greatly from the knowledge of the MedHelp Lyme disease community, and so I am sure you will too. Do keep us posted on any developments.

Be well, all.

[JackieCalifornia]

In passing:  I have been musing over this passage in one of your posts above --

"it could only seem like an autoimmune process is in train when in actual fact the body is attempting to attack the BB pathogen. However, as the BB bacteria are now intracellular, & the body's own defence mechanisms are of somewhat limited sophistication, it just appears as though the body is attacking itself, when it is in reality trying to attack (alien bacteria that have settled in) the myelin sheath, as would be the case in MS, for example. This reasoning does not mean, in my mind at least, that Lyme disease is an autoimmune condition."

I would be very interested if anyone runs across more on this intriguing line of thought.  I suspect we (the collective world 'we') will get much closer to the truth of how all this connects when Lyme is no longer ignored by so-called mainstream medicine.  

[jx28]

Hi all!

Hope you're staying strong.

Just thought I'd give you an update.

I'm off to Germany today, for my first consultation at the BCA tomorrow. I'll have to let you know how I get on.  

I also intend to do a little more fishing around in relation to your last post in this chain, JackieCalifornia, so I'll have to let you know if I come across anything interesting.

All the best for now.

[JackieCalifornia]

Travel well!  We look forward to an update -- best wishes for fair winds, following seas ... and a wise and compassionate physician.

[Ricobord]

How did it go?

I found the list of articles regarding MS and Lyme that I mentioned earlier. I'll post it on a new thread as well.


http://www.lymeinfo.net/multiplesclerosis.html

[jx28]

Hello!

Thanks for both of your messages. I returned late last night after a long couple of snow-filled days in Germany. It was okay, though perhaps my expectations had been set too high beforehand! Got some serious thinking to do and decisions to make now about how to progress. I'll send you both a PM with more details, as I'm not sure how much I should say on a public thread. Likewise, anyone else reading this who'd like to know more, please feel free to message me privately.

And thanks, Ricobord, for the link too. It's a really good resource! I actually got the article from 2000 I posted above from there, but it's great that you've highlighted the main page to everyone here. I hope you're feeling a little better now.

Speak soon!

[JackieCalifornia]

Regarding immunomodulators vs immunosuppressants:

If anyone reads through this very long thread and gets to this point, I am about to make a separate post on something I just ran across which bears on this point.

The person who posted above and informed me sternly that immunomodulators and immunosuppressants are not at all the same thing and have no relation to each other.

I backed off at that point, but interestingly have in the process of doing something else entirely have found information elsewhere that speaks more generally about modulators vs suppressants.

While the person who smacked me up above may have a firm idea in her own mind of what the effects are or are not in multiple sclerosis (which is her own separate area of concern), the general point should not be missed that a suppressant and a modulator are indeed not the same thing.

So please look for a separate post on this point, which I am about to put up on this site, if this is a topic of interest or concern for you.

Thank you.

[jx28]

Thanks very much for posting this, Jackie.

Many of us have either experienced personally, or read of others, who've got LD and who've taken immunosuppressants, and had a (sometimes extremely) bad reaction.

Of course, immunosuppressants have their place, and that's often where the inflammation is so far gone, it doesn't seem to be settling of its own accord. This seems regularly to happen after an MS attack.

But, as you rightly say, immunosuppressants and immunomodulators are different things, insofar as the former only suppresses the immune system, and the latter can serve both to suppress and stimulate it.

For people's ease of reference, I re-copy one of the most pertinent paragraphs from your cited article by Dallas Clouatre:

"More readily available immune modulators include, perhaps surprisingly, many probiotics. Few individuals realize that probiotic organisms can stimulate immune function, and fewer still know that these special bacteria can also tone down excessive immune activity. Such benefits may help to explain why populations that regularly consume fermented foods appear to be healthier. ..."

So, what's in a name? Apparently quite a lot! Immunomodulators modulate the immune system. To reiterate: to modulate, in this context, is to endeavour to achieve balance, which can entail both stimulating and suppressing the immune system.

This definition is certainly also in line with my thinking based on my reading elsewhere.

Conclusion: those readers with an autoimmune condition (like MS) AND an infection (like Lyme disease) should approach immunomodulators with care, and under the guidance and supervision of a suitably knowledgeable medical professional.

[JackieCalifornia]

Well said!  

Glad the clip was of interest.

[JackieCalifornia]

and PS, re-reading my first post (above) about the Clouatre piece shows how half asleep I was when I wrote it.  Sorry for the garbling, but wanted to post it before I fell asleep and forgot!  

jx28, thanks for the re-framing.

[jx28]

Hi all!

I hope you're keeping strong.

I thought I'd post in this thread of mine, for consistency, a link to a radio show with Dr Armin Schwarzbach, lab doctor at Infectolab, part of the BCA, in which the link between Lyme disease and MS is discussed at various points:

http://www.blogtalkradio.com/in-short-order/2013/05/12/in-short-order--dr-armin-schwarzbach

It's worth a listen even if you're not particularly focused on MS. Dr Alan MacDonald, of 'Under Our Skin' fame, makes an appearance as a guest caller. I'm pleased to report he sounds in good health himself.

As some of you already know, my relationship with the BCA ultimately came to naught - inter alia, as I didn't want to move to Germany, they could only send me the necessary, longer-term drugs if my UK GP prescribed them. My GP refused, and so, after having also researched a number of other options closer to home in vain, I turned to the US, as the US doc recommended by my friend can send the drugs back to me in the UK directly.

So, I arrived in California last night, and my first appointment with the US LLMD is tmrw. If he still deems it appropriate when he meets me, he wants to start me on IV antibiotics, before sending me on my way with oral meds. Here for a fortnight, for the start of my treatment. Bit nervous, but keeping positive. With any luck, because I can be treated remotely, I'll then return to the UK, and it will actually turn out to be cheaper than if I'd moved to Germany. ...I'll have to let you know how I get on.

Warm wishes to you all for now.

[jx28]

Hi JackieCalifornia, I hope you're well.

Further to my last message:

In relation to your post above about probiotics being immunomodulators, a question came to mind:

Has anyone ever gone on abx, but then taken probiotics (in the hope that the latter will counteract some of the bad side effects of the abx), but actually found his/her condition getting worse?

If probiotics are immunomodulators, as established above, which can supposedly stimulate as well as suppress the immune system, I wonder if anyone has dipped with their LD as a result of having taken an immunosuppressive probiotic.

Any comments are gratefully received.

[cave76]

My answer to your above question ------ I took probiotics consistently throughout my abx treatments. I gradually, slowly improved but got kicked over the goal post with bicillin LA and achieved a 3-4 year remission while still on probiotics.

That's just one person answering your poll. :)

[cave76]

"Different probiotics may also have different effects, sometimes opposite, depending on the type. Therefore it is difficult to draw overall conclusions on the risks and benefits of probiotics"

http://agris.fao.org/agris-search/search/display.do?f=2004%2FNL%2FNL04017.xml%3BNL2004724707
*****************************************

http://rivm.openrepository.com/rivm/bitstream/10029/8908/1/340320001.pdf

"Alterations in specific immune parameters cannot be interpreted unidirectionally as beneficial or deleterious."

This survey of literature was several years ago. I welcome reading any newer review or survey.

"5 Safety of probiotics: are probiotics (immunologically)
safe?

In the previous section several beneficial effects of probiotics and their proposed mechanisms
have been discussed. By the same token that probiotics may enhace health due to
immunologic mechanisms, influences on the immune system may also have deleterious
effects on health. Unfortunately, little information is available on deleterious effects of
probiotic use.

Only a few studies have dealt with pathological features of probiotics (Bayer
et al., 1978; Sharpe et al., 1973; Harty et al., 1994). In these papers infections, endocartitis,
dental caries, rheumatic vascular disease, septicaemia were described due to the ingestion of
lactobacilli. Thus, one issue that clearly needs more attention is safety of probiotics. This
pertains to the entire population as well as subgroups, such as children, the elderly, allergy
prone individuals, immunocompromized individuals, especially as there is a tendency to
promote the use of probiotics for specific groups (for instance in baby formula with the hope
to decrease the chance of developing asthma later on in life).


Alterations in specific immune parameters cannot be interpreted unidirectionally as beneficial
or deleterious. For instance: an increased Th1 response may enhance resistance to an
infection, yet also increase the expression of autoimmunity. Increased natural killer activity
may enhance the resistance to viral infections, yet through enhanced interferon production
also enhance the severity of inflammatory responses to bacterial infections. Hence, immune
alterations may be indicative of biological effects of exposure to probiotics, they are not
necessarily indicative of the direction of the health effect.


Further research to characterize effects of exposure to probiotics, including the unravelling of
mechanistic pathways, the assessment of dose-response relationships, and the comparison of
effects of different types of probiotics will provide a first step in understanding the balance
between positive and negative effects.

The most appropriate way to conclude whether
immune effects noted are beneficial or rather deleterious is to study effects of exposure in
disease models. Such models include infection models, models of respiratory, skin, and food
allergy and models of autoimmunity. Patterns of immune alteration due to the probiotics may
interpreted in the context of the clinical effects observed, so that eventually such patterns
alone would be able to indicate possible beneficial or deleterious effects of probiotics.


Even if there is an array of immune parameters available that can be measured, it is doubtful
whether these alone will suffice to indicate patterns of beneficial or disadvantageous effects.
Especially as many different cell types, interleukins, cell receptors, transcription factors, etc.
may be involved, that can never all be evaluated simultaneously in one or a limited number of
experiments, a natural next step to analyze effects of exposure of probiotics is to investigate
effects on gene expression. Such parameters too should be validated against clinical effects
found in disease models.

Information on patterns of effects indicative of positive or negative consequences of the use of probiotics will eventually form the basis of designing a protocol for the evaluation of probiotics to be put on the market."

[I offer these not to be confrontational but in the spirit of discussing the pros and cons of probiotics---- by  scientists. They are NOT  my words.]

[nutrinut_bob]

Some very good info in this post, sorry I didn't find it sooner.  Very interesting to see the Germans testing for filariasis and toxoplasma.  I had to get the filiariasis testing via the National Institute of Health here.  I had a weak positive as I had already killed the  feline worms.  Had to pay for toxoplasma testing not too long ago, some reaction, but not high enough to be considered positive for either IgG or IgM.  Probiotics, I don't mess with, been reading too much about how what we get is often determined by our gut flora.  I'll leave that department up to God, whatever is able to survive my herbals must be what's intended to be there.  Lots of recent research available online in that department.

[jx28]

Thanks very much for your posts, and the helpful information contained therein. Some food for thought.

Cave76, I hope you're still in remission.

Nutrinut_bob, it wasn't the Germans who tested me for filariasis and toxoplasma, but rather a private infectious diseases doc in London.

Any further comments on how people have reacted to probiotics are welcomed.

Thanks again all!

[cave76]

Not still in remission. But hopefully will be in a few months. :) Maybe.

[Ricobord]

Glad to hear you made it to the CA LLMD. I hope it all goes well and you get a good start on the road to treatment!

I was taking some relatively inexpensive probiotics earlier in my treatment and I was still have a lot of gut problems. My doc suggested Klaire Labs complete instead, and they were clearly better for me. He insists on probiotics to help avoid getting C. difficile. On occasion I haven't taken them and I can tell by the next morning. Without them I get more bloating and stomach tenderness.

I've haven't heard of probiotics making Lyme symptoms worse, but then there's so much about the gut/immune system that we don't understand yet. In my case I am worse without them as the antibiotics kill too many of the good bugs in my intestines.  I suspect if anyone started antibiotics with probiotics and got worse, it was most likely a result of herxing.

[JackieCalifornia]

Welcome to California!  We'll try to schedule a small earthquake while you are here, just to give you a good story to relate when you are home again.  

Re probiotics:

I think from reading and experience that probiotics are a very good thing, given that the antibiotics are killing off all the natural flora in your gut.

However (pardon if this is a repeat).

There are two kinds of probiotics, the more common bacterial probiotics such as Acidophilus, and the yeast-based probiotics such as Saccharomyces boulardii, including brand name Florastor.  

The advantage to Florastor et al. is that antibiotics cannot disturb or damage the probiotics, so there is continual balance in the gut as the 'good' S. boulardii/Florastor yeast crowds out the 'bad' yeast of an opportunistic fungal infection.

It seems however that some people are yeast-sensitive, and I am one the lucky.  My LLMD insisted on Florastor for his patients, and it was only well into treatment that my bad reaction to Florastor was noted:  serious bloating, brain fog, red eyes, aching teeth ... just lovely.  The brain fog was not very different from Lyme itself, and neither my doc nor I put much emphasis on it, until it got so bad that he ran a blood test and found (so he said) the highest levels of yeast in my blood stream that he had ever seen.

Lyme then became a secondary issue, and killing the fungal infection was first up.  A lot of Diflucan and a radical dietary change (few carbs, no sugars) turned things around, and I am fine now, some years later.  It is however an adventure I do not recommend to anyone.  (For months after, even walking down the bread aisle in the grocery store made me lightheaded from yeast sensitivity.)

The alternative approach to Florastor is to take bacterial probiotics such as Acidophilus, being very careful to allow sufficient time between probiotic and antibiotic doses so that they do not conflict (I don't recall exactly how long a gap is advisable ... at least one hour, perhaps two).  It's doable, just takes some planning, rigorous time management, and a reputable brand of Acidophilus (there is a lot of junk out there on the market; refrigerated brands may be better for bacterial viability, not sure).

So that's my speech.  Not all bad reactions are Herxes, and mine was unusual, but not unheard of.  

Best wishes to you -- keep watching for that earthquake -- it may feel only like the rumble of a large truck going down the street, but it is fine story when you are home, that you survived Lyme, and California, *and* an earthquake.

Best, J.

[jx28]

Cave76, I sincerely hope remission is forthcoming again for you, and very soon indeed!

Ricobord & JackieCalifornia, thank you, as ever, for the helpful posts and kind words of encouragement. I hope you're both keeping well. It seems I would be doing myself a disservice not to be on probiotics, & that I should just keep my eyes peeled all the while.

Jackie, I did recall your troubles with yeast, but thanks for the extra info on the different types of probiotics.

Met the doc for the first time yesterday, & he's v nice indeed. He actually listened to me! I'm already on a host of supplements but, amongst other things, he would like me to up my vit B12 intake, & start on NAC.

Had IV to draw out heavy metals for a 24 hr urine test, and am doing a bartonella challenge test at the mo. If I Herx, it confirms bartonella is a problem. Eek! Given my European test results were positive for bart, this seems likely, though I have been on the Cowden protocol since Sept now, so hopefully that will have helped. Busy afternoon today, with more testing & then first antibiotics (rocephin) by IV. Wish me luck!

Finally, how lucky you are to live in California! I'd never been to the West Coast before, but the beautiful landscape and welcoming people make the reason for my trip a little easier to stomach! I'll also keep my inner-seismograph on high alert!;)