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.
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."
... 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.
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.]
• 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.
(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:
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.
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.
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.
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!
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.
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.
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.