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