Treating for Chlamydia pneumoniae - a possible cause of MS

Tell us what you are using to treat your MS-- and how you are doing.

Postby SarahLonglands » Tue Jul 27, 2004 3:26 am

Sim,

A forward thinking GP! You are lucky. I don't know what flagyl or zithromax are, so don't know if they would be useful but why not show David's pdf file to your GP because it explains more about the usefulness of metronidizole to rid the organism for good? Minocycline is only the start, but a good one!

http://www.davidwheldon.co.uk/cpn-treatment.pdf

The second pdf file is also interesting as it is a review of the current literature available on the subject:

http://www.davidwheldon.co.uk/cpn-ms.pdf

I am not sure about homeopathic physicians: in the UK they seem to think that antibiotics are the worst thing imaginable.

I know I can only ever be simply anecdotal because I was not part of a trial, but I know how I was a year ago, how I felt and so on, compared to how I am now. Then, of course, there are the vastly diminishing lesions. If I had been left untreated as per a certain neurologists desire, I would by now be stuck in a wheelchair. Now I can walk at least half a mile without resorting to a stick. Never mind the painting, which was/is how I made/make my living.

Sarah
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Postby Ptwo » Tue Jul 27, 2004 5:46 pm

Sarah, I'm wondering if you just weren't misdiagnosed with SP to begin with and are still RR. Your story is not to much different that a lot of other people who have a big relapse and then take a year or two or four in my case to recover. I was told 4 yrs ago that I was starting up the hill of SP but now 4 yrs have gone by and no relapse. I haven't had an MRI in 30 months but at that time there had been no progression.

My niece has a very active form of the disease, she's had several full body lockups and has been experiencing an exacerbation about every month or two. She gets frequent MRI's, about every 3 months or so. She makes a lot of new lesions, but the interesting thing is she loses them as fast as she gains them. The head of the local ms center said he's never seen anyone have as much repair work done as she has had.

Every case of ms is different so its impossible to tell what your progression would have been like if you had done nothing.I have a feeling it will be many years, maybe 10-15 before you have any idea if what you're trying really has had any effect.
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Postby SarahLonglands » Wed Jul 28, 2004 2:52 am

Sarah, I'm wondering if you just weren't misdiagnosed with SP to begin with and are still RR. Your story is not to much different that a lot of other people who have a big relapse and then take a year or two or four in my case to recover.


I did at first wonder the same thing myself, but have discovered that with RRMS there is always something going on in the brain: miniscule new lesions or whatever. The radiologist went over my scans with a fine tooth comb to make sure there was nothing active or developing.

The suggestion of misdiagnosis is surely a bit insulting to the neurologist: would he just abandon me to my fate if he thought I would benefit from his idea of 'current treatment'?

If I had done nothing I would certainly be in a wheelchair by now because I was going downhill so rapidly, compared to the previous fifteen years of minor relapses and subsequent nearly complete recoveries. I know what I was like then, what I became and what I am like now: a former straight A's pupil who felt as though she couldn't put two words together sensibly some days in the later stages, but who has now regained everything mentally. I didn't feel like waiting 10-15 years to find out what would have happened: I would be into my fifties by then and would have wasted even more of my life than I have already. A born risk taker, I preferred to plunge into the unknown and see what happened. What did happen suits me fine.

Sarah
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Postby SarahLonglands » Tue Aug 17, 2004 4:18 am

I am currently awaiting another scan. If, as expected by both consultant microbiologist and consultant radiologist, it shows no adverse events, I will be stopping the 'full-time' antibiotics and moving to a regime of three months off, three weeks on, with a bout of metronidizole in the middle of that three weeks. This will mean going back to doxycycline rather than rifampicin, because you can't take that sporadically.

The radiologist is anxious to use the same machine and radiologist for the sake of absolute continuity, so I don't know when exactly yet, because the department is undergoing large scale redevelopment and of course, I can't just jump the queue because of who I am married to. Other people needs are far greater than mine.

If I feel really confident, I might just stop the full-time regime when I finish my current course of rifampicin: I think I have about another three weeks left.

Sarah
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Postby SarahLonglands » Thu Sep 09, 2004 3:50 am

Well, on Tuesday I had my follow up MRI scan, luckily at very short notice because I always get terribly worried, not about the machine itself but what it is going to show. Its all very well feeling that you are doing so much better, but what might be going on behind the scenes? Very silly really, but I can’t help it. On Monday I could have walked the couple of miles to the hospital, given time, but yesterday? I was wobbling all over the place by lunchtime, so had to call a taxi.

The scan actually showed improvements beyond all expectations: some lesions on the outside edge had completely vanished and all the others where greatly diminished. There were no new lesions at all. This just does not happen with either of the progressive forms of the disease. The radiologist, who went through the scans with us, had never seen anything like it and is going to take the sequential scans to the neuroradiologists at both Addenbrookes, our regional neurology centre, and Oxford, to show them.

Very shortly now I will be reducing the antibiotics, maybe to just 2 roxithromycin a day, cutting down then to one a day, or maybe intermediate treatment with doxycycline for three weeks every now and then, with five day bursts of metronidizole in the middle of the three weeks. Personally, I would prefer the first option because metronidizole makes me deathly tired and also weepy, but we will see.

David is now treating several MS patients and chronic fatigue patients, very successfully. He gives adequate amounts of time to each one, explaining everything to them and telling them to email him whenever they want reassuring about something. A paper is still very much in the offing, but he keeps finding new and relevant cases to add to it!

As for ‘my’ neurologist, who wrote me off a year ago, in an incredibly brief session on one of his afternoons over from Addenbrookes, where he is based, I don’t yet know what he will think when and if he sees the scans. I know he saw the second scans but I heard nothing. In a way, I don’t care, but in another way I do, because so many people could be benefiting from this, but as yet only a few GPs seem willing to refer someone with MS to a microbiologist. Actually quite a lot now do so locally.

The pity is that it has been found both by David and the team at Vanderbilt, where most of the research is going on, that the more deeply entrenched the progressive forms of the disease, the less likely one is to have much improvement, if at all. Therefore the earlier one starts the treatment the better. Luckily I had only been progressive for three years at most.

Sarah
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Postby SarahLonglands » Sat Sep 11, 2004 12:14 pm

I am copying a few postings from my entry in the General Discussion section re: this treatment.


Firstly from Byron

Is it even necessary to take the metronidizole at the frequency prescribed? Would it be effective to only take, for example, a 400mg pill once a week, so long as the other antibiotics are being taken continuously?

I am keeping in mind, of course, that Minocycline can be safely taken over a period of years. In my experience, taking Minocycline produced a 4-day period where the symptoms of (relapsing-remitting) MS worsened considerably, then followed by a complete disappearance of observable symptoms. There is also none of the usual fatigue.

Naturally, I am not looking forward to the metronidizole, and am wondering how best to reduce the effects.


Then me

Hello Byron,

Yes, probably/maybe. Who knows at present. To tell the truth I often missed a few days because I felt so awful. Other people who are definitely improving feel the same way, but they tend to be more obedient than me!

Best of luck!

Sarah

PS: What are you taking otherwise, and for how long?


Then Byron

Thanks for the information, Sarah. Betaseron, every other day.

It's actually not I who has the MS; it is my girlfriend. I was the one who recommended the same treatment that you are taking, to her. She showed Dr. Wheldon's web pages on your treatment to her neurologist and the neurologist essentially responded with, "I never heard of anything about this. The whole idea is ridiculous." She decided to take the Minocycline anyway, which she got off-shore.

For two days, nothing of note happened, and then the MS symptoms got much worse. She slept as much as possible, while I paced up and down in my living room and tried to watch TV to distract myself. From my perspective, it was nerve-wracking, especially since it was in direct opposition to her neurologist's instructions. She says it never occurred to her that there might have been a link between taking the Minocycline and the worsening of her symptoms or she might have stopped taking it. It was extremely painful, especially since waking her just to take her medicine and get properly hydrated seemed to me as if I was inflicting physical abuse on her.

On the 7th day after starting the Minocycline, she felt much better, although somewhat shaky and on the 8th day, all MS symptoms were gone, except for one eye which still gets somewhat blurry when she gets over-heated. That is probably long-term damage and I am hoping it will fix itself eventually. Every symptom she had ever had reported with MS seems like it came back during those horrible four days, except for the optic neuritis in that eye. There is probably a relationship there.

She is now sleeping regularly. This is, of course, just speculation on my part, but I think there's likely a link between having an infection and lack of sleep: when you are ill, you are particularly vulnerable, so may be we evolved to not sleep easily during infections.

Dr. Wheldon says, "The results were astonishing." They certainly are! I am still trying to recover from the emotional roller-coaster I went through. She is making atrocious puns (which she hasn't done in years), sleeping reguarly, avoiding red meat and wine in preparation for the metronidizole, and having a great time. She appears to have much more energy, both at work and in all aspects.

BTW, it is probably worthwhile to note that Minocycline, (100mg taken every 12 hours, initial dose of 200mg), seems to have the same effect. She had taken betaseron for several years prior to starting on Minocycline. Dr. Wheldon writes, "In MS, particularly relapsing-remitting MS, the bacterial load is likely to be small, and the reaction brief." She has relapsing-remitting MS, but it does not seem like the bacterial load was small. The negative response seems to have been as intense and prolonged as in your case. Possibly, given her history of betaseron, the bacterial load had built up considerably but the betaseron managed to prevent greater damage so the disease was still in the relapsing-remitting stage.

She is continuing on the betaseron. As far as her neurologist and insurance company is concerned, she still officially suffers from MS. Obviously, since her neurologist did not treat her, she cannot have gotten better. I don't know. Perhaps it is still a bit too early for me to start getting sarcastic.

She is due for another MRI in about a year. If there are no other symptoms and the lesions become pronouncedly smaller, she might stop taking the betaseron then. We still haven't figured out when to start the course of metronidazole. Maybe wait till the MRI, but we are also concerned about developed bacterial resistence to the Minocycline. That would be terrible, since the mutated organism would possibly be resistant to all of the tetracyclines and then we would be in serious trouble. But, I am not looking forward to it, either...


Then Arron

Can I just take a moment to say that this thread may just be incredibly important to a large number of people....

Byron and Anecdote, thank you SO much for sharing your experiences, you are truly on the vanguard of MS therapies.

Byron does raise an excellent point about the possibility of antibiotic-resistant strains of bacteria establishing themselves, but then again, if it was indeed an infection, it was untreated before. You're net result is a gain, in that for the intervening years between treatment and resistance things are good...?


Then a long one from me

Hello again, Byron,
This is the reply given to me by my husband, David, aka Dr. David Wheldon FRCPath! While he was working hard on this, I was working hard on repairing a damaged canvas, so now we must both go for some dinner.


A response to Byron's post from David:

Your points are acutely observed and well thought out. I've learnt a lot in the last year through treating a number of patients with MS. As a patient goes through RRMS, he or she tends to accrue progressive deficits; this is often unnoticed at first, but seems to equate with rising bacterial load. It's almost as though there were two parallel components to the disease, an idea which is supported by studies of sequential MRI data. I've recently seen two patients with early RRMS who have had no reactions on starting antibiotics. Both are improving, and have lost many of their accrued deficits. In the case of one patient, the deficits were so slight that the patient noticed them only when they started to go. In later RRMS and in early SP disease the reactions are often more severe; one assumes that this is because the bacterial load has grown. As the disease progresses ever deeper the immune system usually gains the upper hand and destroys the organism. It's a hard-won victory, and there may be immense collateral damage. At this stage there is little or no reaction to antibiotics, and little benefit from treatment. But a trial is worthwhile.

These acute reactions on starting doxycycline/minocycline are probably due to a freezing of bacterial protein synthesis. The organisms are intracellular; one of the host-cell defences against intracellular infections is host-cell suicide; this releases bacterial antigen so that antibodies can be raised against it. In an amazing evolutionary strategy, Chlamydia pneumoniae can prevent host-cell suicide. This, however, requires continuous synthesis of a specific protein. (It is now known that Chlamydia pneumoniae in the CSF of MS patients actively makes this protein; furthermore, persons with MS have antibodies to the same protein.) So the infected host cells are now free to die, releasing their bacteria; these cannot survive in their current state and die also. Their death releases endotoxins, which are a component of the bacterial cell wall. (In an interesting parallel, another chlamydia with a similar strategy is associated with a very rare periocular lymphoma which shrinks when treated with tetracycline.) Unfortunately, a lot of bacteria remain in other cell-lines, and need to be actively killed.

Roxithromycin is a powerful immunomodulator, and partially suppresses the immune system, allowing the toxins to be flushed away rather than evoking an inflammatory response. Both doxycycline and minocycline are immunomodulatory too.

The risk of the emergence of a resistant mutant is, as you say, an unpleasant thought. Workers have tried to do produce resistance in the laboratory with negative results. I suspect the risk of resistance emerging is actually minimal. Resistant mutants usually emerge in rapidly growing cultures treated with minimally inhibitory concentrations of antibiotic; this gives the right evolutionary drive to produce resistance. The organism is in 'tickover' mode in chronic infections like MS and some of the evolutionary pressure is removed. Using two antibiotics which act synergically certainly reduces any risk.

So I should be in no hurry to start metronidazole. Long-term minocycline is likely to be effective, with roxithromycin if this can be obtained, together with full supplementation - I'd allow three months before metronidazole is considered; and it should be started gently. Having witnessed a bad reaction to minocycline it would be beneficial to 'waste' as many organisms as possible before starting the killing phase. One interesting rider. Serology is usually negative in MS, but this is not always the case. I've just seen a man with early PPMS (18 months), retinal vasculitis and follicular conjunctivitis. He has raised antibodies to Chlamydia pneumoniae, with an MIF of 1:1024 and high Chlamydia pneumoniae-specific IgA. (This is a fairly reliable indicator of persistent infection.) It's early days, but his carer reports good early improvement. His neurologist was very dismissive (rudely so), so I must write to him and tell him the serology results.

MS is multifactorial. A number of genes seems to play a part in the expression of the disease. I have recently seen a patient with a multisystem disorder including retinal vasculitis and Crohn's disease. She had grossly elevated Chlamydia pneumoniae serology. An MRI scan showed typical white-matter hyperintensities which transected the long motor tracts in several places. However, she had no focal neurological signs. Presumably she was fortunate in her genetic make-up.

Work has been done in many different disciplines, in microbiology, immunohistology, cellular biochemistry and neuroimmunology. The science is all there, but not many people have yet joined up the dots.

And you are right; treating someone close to you for a large-load Chlamydia pneumoniae infection of the brain is an emotional roller-coaster.



Best of luck with this and best wishes to you and your girlfriend: if the next MRI shows big improvements, perhaps the neurologist will sit up and take note. We are hoping that 'mine' will too, sooner or later.

Don't hesitate to ask any questions at any time By the way, you only need to stop drinking the red wine a day before starting on the metronidizole. (Doctor's orders!!) I should call him David as well.

Sarah


Then Byron

I think I should also share my experience about getting Minocycline. If you have an uncooperative neurologist, you are pretty much on your own. You can find Minocycline on the web. (Just enter "buy minocycline" in Google.) The first place that I bought Minocycline from was a pharmacy on the web that allows you to seek a consultation and then ships you the medicine. Their medicine came in the usual prescription translucent orange bottles. It noted the name of the medicine and the dosage, but did not have an expiration date printed on the bottle. I tried it for a while (I am not going to feed my girlfriend anything that I have not tried myself), and developed mild pain in my lower body near my kidneys. (Expired Minocycline will destroy your kidneys. I am not saying that the Minocycline that they shipped me was expired. If I claim it is expired, then I am opening myself to libel. That is why this post is so rambling, so that you can draw your own conclusions.)

I stopped taking it and ordered some Minocycline from an Australian pharmacy. It came in a sealed bottle with a printed expiration date of next year. I took it for a week, and the pain in my kidneys (although minor) stopped completely. Herxberg syndrome makes things worse, so if I had a kidney infection, my kidneys might have temporarily gotten worse. However, going back to the original Minocycline again caused the same sort of pain. As I said, draw your own conclusions.

The Australian pharmacy, the one that shipped me the Minocycline with a printed expiration date and in a factory-sealed bottle is http://www.drugs-market.com/freedom-pha ... ycin.shtml - Both my girlfriend and I have been taking this medicine without any kidney pain.

The Florida pharmacy, the one that shipped me the Minocycline that I took and during which I had kidney pain is http://www.usdrugsdirect.com/ and also goes under the name of hmuniversal.com.


Then me

We seemed to be both posting at the same time there! What I just want to add is that roxithromycin is available both in Canada and Australia, so you should be able to order that from the same pharmacy. Also perfectly kosher 'rulid', the brand name of the original roxithromycin can be bought over the counter in Spain, if anyone is going there. (Probably more relevant to us Europeans.)

Be very circumspect if ordering anything from an on line pharmacy: although there are many third world pharmacies who are perfectly kosher, there are many rogues out there as well, so a quick google search of the manufacturer should be done.

Sarah


Then Byron

Sarah. My great thanks both to you and to David Whelden for sharing all of this information.

Yes, I just ordered some roxithromycin and metronidazole from the same place. They say a delay of 3 weeks till it gets here, but I guess there's no hurry. Totalling up the vitamins and minerals that David has suggested, along with the antibiotics, I counted, comes to 20 pills a day! And 24 when taking the metronidazole.

We'll probably start her on the metronidazole during the holidays (about 3.5 months from now.) That'll be a good time to allow her to rest if necessary. I noted that David pointed out that the metronidazole does not cause any problems with the underlying neurological function, so her MRI scan next year will not be affected by whenever it is started.

I will report changes as they occur, and at the very latest, during January after the first reaction to the metronidazole.


Not bad for a day's work over the Atalantic, is it? I went off for a couple of glasses of claret at this point and I hope Byron and his girlfriend did to!
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Thoughts on taking the antibiotics

Postby SarahLonglands » Tue Sep 14, 2004 3:51 am

I thought I would just make a few comments about taking the antibiotics:

Although the instructions in the packet might read differently, the instructions given on the typewritten blurb stuck on the packet/jar by the pharmacist just says 'twice a day' or 'three times a day' in the case of metronidizole. I thought at first that this meant I had to take them exactly spaced throughout 24 hours, so when to take the acidophilus? 'Don't worry,' said my husband, 'take one lot with breakfast and one with dinner and the third lot of metronidizole with lunch, then you can take the acidophilus before you go to bed.' Great relief. It has worked, anyway. He is the specialist microbiologist, after all!

Sarah
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convincing neuro

Postby billf » Tue Sep 14, 2004 10:00 am

There is a ton of good information here on minocycline. However I am having a hard time collapsing all of it (from the minocyline threads and regimen threads) into a clear, concise summary for use in convincing my neuro to try minocycline. Is there anyone who could put together a 1-page summary of the following info to take to the neuro. This would be helpful to many of us.
1)brief summary of the compelling reasons for trying minocycle including some of the research and trial results (or links to these).
2)typical regimen including known side-affects
3)anything else I am missing
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minocyline

Postby treez » Tue Sep 14, 2004 1:06 pm

I concur with Bill, the amount of info here is tremendous! The problem I've been having is consolidation. The info appears in more than one location too. Then add all the links to pages within the postings and it is becoming overwhelming! I have a Neuro. appointment this Fri. and have been trying to keep up!

Any ideas?

Steve
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Postby SarahLonglands » Wed Sep 15, 2004 5:22 am

Bill and Steve,

If you are going down the route of MS having an infective cause, all you really need are these:

http://www.davidwheldon.co.uk/ms_treatment.html

http://www.davidwheldon.co.uk/cpn-treatment.pdf

http://www.davidwheldon.co.uk/cpn-ms.pdf

The first details my treatment and responses, with a 'question and answer' section the second outlines the regime of treatment and the third is a review of the current literature on the topic. It talks about doxycycline rather than minocycline, but that is just personal choice as well as being what is more the norm in this country. The dosage is the same.

However, if you are going down the route of minocycline and its immunomodulatory use, you will have to research on the Canadian trial. From my response to treatment, I think the former is the route to take!

Sarah
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Postby Author » Fri Sep 17, 2004 9:42 am

Sarah,

Am I correct that during the Metronidazole cycles one does not take the Doxycycline or Roxithromycin?

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Postby SarahLonglands » Fri Sep 17, 2004 10:04 am

James,

NO!! You must carry on taking everything, but only take the metronidizole for as long as you can stand it each time. Also don't be in a hurry to start it: leave at least three months after starting everything else.

Take care,

Sarah
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Postby SarahLonglands » Wed Sep 29, 2004 3:50 am

Today, September 29th, is my first day of taking just one roxithromycin per day, with the aim of being off them within a couple of months, thereafter taking top up doses of doxy/roxy for three weeks at a time, with metronidizole added for five days in the middle, every two or three months, for a period yet to be decided.

This is all new, so I will just have to see how it goes and keep you informed.

Sarah
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Postby Xenova » Fri Oct 01, 2004 12:20 pm

In light of this current discussion on chlamydia pneu, I found interesting research that Interferon B might be effective in MS in that it helps to control the virus.

If C. Pneumoniae infection is responsible for the inflammatory response in the PathoGenesis of MS, the beneficial effects of IFN-ß in MS may be due to its enhancing IntraCellular NO activity while inhibiting secretion of the proinflammatory Cytokine, IL-12.


http://www.ncbi.nlm.nih.gov/entrez/quer ... t=Abstract

I meant to say bacteria, not virus.
Last edited by Xenova on Sun Oct 03, 2004 9:18 am, edited 1 time in total.
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Postby SarahLonglands » Sat Oct 02, 2004 5:35 am

Xenova,

You are quite right on this count. This work was actually done by the Vanderbilt team, both microbiologists and neurologists. It shows that the effectiveness of beta interferon largely lies with its ability to restrict the growth of C Pn infection. This is why people currently taking beta interferon need not stop it when taking the antibiotic treatment.

Sarah
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