This Is MS Multiple Sclerosis Community: Knowledge & Support

Just one point on reviewing the references given in the posts on this thread. The real breakthroughs in finding substantial evidence for a link with C. pneumoniae (CPN) and at least some variants of MS have come only in the last two years; much that was written only a few years ago is now out of date. So it is very important for those with some medical knowledge to be aware of this. Trawling PubMed for abstracts doesn't really help unless there is knowledge within the subject. And it's complex and multidisciplinary.

Evidence for an association (as of now) rests on the following - and for clarity I'm leaving out the references:

1) The finding of CPN DNA in the CSF of patients with MS. At the last count at least 8 centres have done this. (By itself this is of uncertain significance; it could be secondary - an 'innocent bystander'.)

2) An association of relapse in RRMS with a rise in titre to CPN, and a new CPN respiratory infection just before relapse.

3) Statistical rise in titres to CPN as the disease goes progressive.

4) Antibodies to stress-protein hsp60 in the CNS of those with MS.

5) Active transcription of genes coding for hsp60 by CPN in the CSF of those with MS.

6) Antibodies to hsp90 in the CSF of those with MS.

7) Antibodies to hsp90 cause cell-death of oligodendrocyte precursors.

8) The finding that mass local oligodendrocyte cell-death is the first visualized event in the acute relapse. Demyelination is thus a secondary event in RRMS.

9) A response to antichlamydial antibiotics, even to ones which are not immunomodulatory.

10) Epidemiological evidence of an incompletely transmitted respiratory pathogen (a pattern typical of CPN) in remote populations.

11) Similar immunological disturbances to those found in other diseases now known to be associated with CPN, such as adult-onset asthma - hsp60 is implicated here, too.


Of course, there is far more to the pathology than this; chronic persistent infections cause huge imbalances in the whole host system, with damaging alterations of cytokine patterns, lipid metabolism and many other things. CPN is very common; almost everyone is exposed to it from childhood onward. Why it causes severe chronic infections of many different forms in some people rather than others may depend on a number of genetic pivots.

This is just a question for Kim to further the discussion:



Are you saying here that everyone who finds that they benefit from antibiotic therapy has been misdiagnosed and didn't have MS at all? I am just asking this because Felly wants 'a more balanced debate' but has now gone off to concentrate on her Phd.

Sarah

Kim, question about your friend who takes doxycycline for acne. Does she take it continuously, or for small periods of time?

It is also important to keep in mind that the bacteria that causes MS seems to be opportunistic. I know of someone who was diagnosed with MS after an operation; the symptoms were initially confused with some sort of strange aftermath caused by the operation until an MRI was done and MS was diagnosed. Similarly, I have heard of someone who was diagnosed with MS after a serious West Nile virus infection.

I would speculate that quite possibly, people who are genetically unlucky with regards to MS are still likely to not suffer from it unless they succumb to a biologically traumatic event. Then the disease reveals itself. Naturally, since everyone logically tends to think in terms of cause-and-effect, the event itself is often viewed with suspicion as the direct cause of the MS.

Anecdote and Dr. Wheldon,

I have read your posts with great interest. I am probable MS- and "early" PPMS or SPMS at that. No remissions, no acute episodes, just a slow, steady slide downwards. In my situation, in particular, I seem to have little to lose by trying antibiotics, since other than Aimspro (we hope), there's nothing in the pipeline that is going to be helpful for my condition, other than the draconian chemotherapies.

I am not looking for medical advice over the Internet, but would be interested in your opinion on the following questions of general interest:

1. I am currently taking LDN 4.5mg, (I have no idea if it is helping or not). Is there any reason to believe that this, or any other supplement (such as Alpha Lipoic-Acid, ALCAR, Policosonal, or Idebenone) should be discontinued while undergoing antibiotic treatment?

I know there were some suggested supplements that one might take with antibiotics, but are there any that one should stop???

2. I am going to have to "go it on my own" if I choose to take antibiotics, because I can't find a doctor willing to work with me. I have a busy, amiable PCP who pretty much does what I tell him otherwise, and I can request Liver Function Tests, etc. I got concerned when I heard that Vanderbilt orders such tests Monthly for their antibiotic patients. Is this necessary, or an overly conservative practice? I can get a Hep panel as much as I need to, but I'm just wondering if that is actually necessary.

3. What if someone was found NOT to have cPN in their CSF by PCR at an academic center, but was PPMS- would there still be any reason to try antibiotics?

4. You allude to the fact that antibiotic treatment should cover for the possibility that the patient has neurological Lyme, for instance. (I myself have a history of tick exposure but am seronegative by ELISA). Am I to assume that the regimen that you have reported would indeed be an effective treatment for Lyme?

Any help you can offer is greatly appreciated.

The work you are doing is fantastic, and important- it is REAL science, free from political or financial agendas, and I appreciate your work more than you can know.

Hello Daunted,

I think I can answer all your questions because I have already asked those or similar of my husband and they certainly are of general interest:

There is no reason to stop taking LDN or any other supplement if you don't want to. The suggested supplements are quite important, though, especially b12 to aid remyelenation and vit D because this is lacking in many people with MS, especially us from northern latitudes.

I have not had a liver function test since starting the antibiotics. It certainly wouldn't be needed within 6 months of starting minocycline or doxycycline, probably not at all for roxithromycin. Rifampicin does need an LFT from time to time, but since I am about to stop it, I probably won't bother. Metronidizole also, but this is not something to take for at least three months. I guess Vanderbilt are just erring on the safe side and have probably been told to in the case of trials.

It is important not to start the regime with any expectation of success: a 'flu-like reaction will probably indicate a release of toxins, but no response may just mean low bacterial numbers, so is no predictor of response.

Serology doesn't help in MS. Many people with chronic Cpn have normal serology, due to the fact that the organism has retreated inside the host cells. Again, testing for Cpn in the CSF is not easy or reliable. Some centres are much better at this than others, as you know, but a trial of a relatively harmless treatment would save a lot of time, especially if you have progressive disease.

There is, in fact, a phrase which I have heard many times from my husband and his colleagues: "empirical treatment", meaning treatment based on symptoms rather than serology or any other test.

Best of luck!

Sarah

I contacted the Blood bank directly with regards to donating blood, their view was that they couldnt accept blood from a person with MS, not because of possible disease transmission or anything like that, they were more concerned with the health of the PWMS.

They felt that donating blood could be a risk factor for that individual, causing undue stress and increasing the risk of infection etc.... All of which may trigger a relapse.

I suppose its nice they think of the donor as much as the recipients!!

Sarah,

Thanks so much. I'm headed to an University Center soon and I've already talked to them by phone about testing my CSF for cPN (as well as running a Western Blot and PCR for Lyme)...because I don't yet meet the diagnostic criteria for MS, yet I'm having loads of symptoms.

But it sounds like, no matter what they find, a trial of antibiotics would be worth a shot.

I have one last doctor to approach before I got this on my own- I will definitely let you all know how it works out!

Hello, all! What an interesting conversation.

Not quite sure what I'm saying regarding antibiotics and misdiagnosis here, Anecdote. I happen to be one of those who believe that MS has become the designer disease of the millenium, and yes, I truly do believe alot of people are misdiagnosed. I believe there are alot more Lyme diagnosis out there than we are aware of, due to testing issues and time frames or "windows" of opporunity, if you will, for accurate test results.

Do I think that anyone who responds to antibiotics doesn't have MS? Nope...I'm not saying that. I just believe that there are far too many people walking around with an MS diagnosis who shouldn't be, without the proper test results to base the diagnosis on.

I do find it interesting that my friend's MS symptoms subside when she takes Doxycycline. No, she doesn't take it all the time, only when she has a severe acne flare up. She isn't on any of the CRAB drugs, either, by the way...Just LDN.

Alot of this goes back to what happened with my son when he initially became ill. Not sure if I've ever told the whole story here, so I will shorten it a bit and give it a whirl.

He had a really severe stomach virus one weekend, vomiting, diarrhea, fever and abdominal cramping. Seen in ER for dehydration, had shot of phenergran. Abdominal cramping continued for a few days, and he was just not himself as far as his stomach went, it seemed he couldn't get over it. The week PRIOR to this he had been on a deer hunting trip and was COVERED with mosquito bites. A week to the day after the viral stomach thing, he complained that his left eye felt like it was "trying to cross". Again on a weekend, so we thought maybe conjunctivitis and planned to take him to the doc on Monday. By Monday, he was increasingly fatigued, and losing feeling in his fingertips. By the time the doc could see him that night, he was having difficulty walking and balancing. A CT was done, and we were told he had multiple inoperable brain tumors, he was then rushed by ambulance to Vanderbilt University Medical Center. (By this time he was completely paralyzed in his left side...) An MRI was done immediately and we were told that the 20-30 spots on his brain were lesions, not tumors. A spinal tap was done with the only abnormality being an elevated white blood cell count, indicating a viral infection. This + multiple mosquito bites and number of lesions = acute disseminated encephalomyelitis....I could at least breath at this point. He was treated with i.v. steroids for 5 days, with slight improvement, at least he could stand, and was sent home on a very low tapering dose that ended REALLY fast. Within a week, same problems, right side. More i.v. steroids. NEVER tested for Lyme until 6 months later. A month later, same problems, back in left side, and that's where our MS diagnosis came in. Another spinal tap was done, still no indication of MS, just an elevated wbc again. I've always wondered if he had been treated with antibiotics and steroids if things would have turned out differently. I also wish they had done a Lyme test at the proper time, but they didn't, and I can't turn back time. I also trusted Vanderbilt to be doing everything that needed to be done.

He's had one severe exacerbation since then, a little over a year ago, while using Avonex. He is now on LDN and doing fantastic, and the doctors are asking me to have him tested for Lyme by a new test still in the research phase. I am hesitant to get another diagnosis that I can't believe in, so I'm on the fence on this one.

Hope this helps to understand where I am coming from a bit better! I shortened it all I can! Sorry for the length, there are just so many important parts to it. Take care!

Kim

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Kim R.

Hello Kim,

I've not seen the whole of your son's story anywhere, just pieced bits together along the way. I was just feeling a bit touchy when I asked that question because of this, in Felly's post:



I might have a tendency to get slightly overzealous sometimes in promulgating the treatment which proved so successful, but bear in mind that in August last year I had a disability rating of about 6, couldn't write, do up buttons or paint, which was my livelihood, then less than a year later I had improved to barely a 2 and am back to painting, though a bit slower at the moment and still improving. This was with an undoubtably correct diagnosis of SPMS, where I should have been just inexorably going downhill.

Your son's story is fascinating and I am certainly glad he is doing so well at the moment. I was also tested for Lyme disease although I don't remember ever having had a tick bite and not living in an area where it is endemic. I have certainly had plenty of mosquito bites, though, especially when cycling in France, but I had already had what I now realise were the first MS attacks before I took to cycling through France.

I really can't say how many people are misdiagnosed when they really have Lyme, but if doxycycline/minocycline was a standard treatment for MS it wouldn't really matter, because it would sort both out.

Maybe more people are diagnosed these days for reasons of environmental toxicity, as well, but partly it maybe simply that, going right back to the nineteenth century, many people just didn't go to see a doctor and if you were very poor and became very ill with something that didn't just kill you, you were stuck away in an asylum and forgotten about. Especially if you were female and/or nonproductive. Who knows.

That apart, perhaps your friend should consider taking doxycycline on a more long term basis: it might sort out both her problems.

Thankyou for telling us more about your son.

Sarah

There was an article floating around on one of the forums whereby they did find something like 5% of people were misdiagnosed with MS. I think that's probably about right. The criteria are such that it isn't an easy thing to get diagnosed with MS- they want some fairly strict proof.

(By this I don't mean possible or probable MS- I mean, a full diagnosis of MS).

But, what I'm actually interested in, is Lyme- what test was recommended to you by a doctor??? Is it the Bowen stuff from South Florida? I'm very curious- I'm trying to eliminate Lyme myself.

It's very clear that the conventional ELISA and Western Blot are sorely lacking, so I wonder about these other tests.