There has been some people posting elsewhere on this board that perhaps what people experience is not a herxheimer reaction (herx) but in fact a reaction to flagyl. Is this fair?
Herxheimer phenomenon have been described in many illnesses when treated with antibiotics. First discovered in 1895 by Jarsich herxheimer and his brother Karl dermatologists treating syphilis (another germ-a spirochete-of the brain) it was noted that upon treatment people would get markedly worse before improving. In fact, the severity of the herx would equal the quality of the healing. We now know that the herx is caused by the reaction of the immune system to the bug being killed. It creates all the usual symptoms of your immune system being activated - flu like symptoms, joint pains, myalgia (muscle aches) temporary worsening of the illness being treated etc. Today we can do lab work to identify the occurance and show things like an increase in WBC's as they respond to the bugs. The herx typically occurs in the first hours to even 10 days of treament after which healing takes place.
A nice overview of herx is here: http://lassesen.com/cfids/herxheimer.htm
and a second associating it with RA http://www.garynull.com/Documents/Arthr ... Effect.htm
and a third associating it with sarcoidosis
Note that the last two links are both for diseases assumed to be "autoimmune" which have mounting evidence that in fact these diseases are in fact caused by a germ. In the case of sarcoidosis in particular, we have a large body of research indicating that the "autoimmune" sarcoid lesions are filled with cell wall deficent bacteria. Cell wall deficient bacteria are the same type as CPn in MS. If you go to pubmed and enter sarcoidosis and bacteria you get about 200 citations. As in MS, some of those papers did not find the germ. But many more do. (Generally if they use PCR analysis they find it. If not, they tend to be on the other side.) And there are numerous pictures of these cell wall deficent bacteria in the sarcoid lesion seen here at bottom http://www.joimr.org/phorum/read.php?f=2&i=48&t=48
That's pretty hard to argue with: but then the debate becomes "is this meaningful?" Maybe those germs are not the cause of the problem but just a bystander? Or a secondary infection. How long do you think a patient ought to let this academic argument go on before trying it empirically to see if he is better? To the sarcoidosis patients treated and healed (Marshall Protocol is used for sarc) the argument is moot.
As for the assumption that members here posting reactions to flagyl in fact were experiencing side effects of flagyl and not herx, there are several things to know. Absolutely first is this: herx can be very dramatic and happen soon after treatment starts, they can appear to be toxic reactions to the drug and it takes a person experienced with herxheimer phenomenons to easily recognize them. Unfortunately today many docs do not know about this unless they actively deal with the infectious diseases treated by abx which cause this, thus Dr Wheldon's sanguine reaction to Sarah's symptoms. Second, flagyl can
cause peripheral neuropathy. However, this is a RARE side effect. It is also associated with long term therapy. The usual length of treatment for most bacterial infections is at least 7 days for flagyl per round, so we are talking well beyond that. Today we see some people esp with AIDS getting treatment for longer periods of time and thus rare side effects like PN might show up. It is not correct to assume that people one or two days into their first or second flagyl treatment are in fact experiencing a rare side effect of the medication that occurs after long term use instead of assuming they are experiencing herxheimer phenomenon which usually occurs at that point in treatment. This is simply illogical and it shows a lack of understanding about the herx phenomenon.
In the case of the people posting their flagyl flares and herx here, they describe symptoms happening soon after starting the drug, and lessening with each flagyl pulse. This is a typical pattern for herx. It is not typical for a side effect which would be mild or non existant in the beginning and build (PN in flagyl goes away after discontinuing the drug, but you would expect it to get worse with each pulse if it was at fault. It could not lessen). It also may well be that in treating, the lesion in the brain becomes somewhat inflammed from the die off of the bug. It makes sense not to treat for too long with flagyl at a time, as Dr Wheldon suggests, so the area can heal after this and remyelination and healing can occur.
I ask this: syphilis is proven to be caused by spirochetes (bacteria). When treated those people will have herx. Should we take them off the drug because they have a reaction? Of course not. But, you will say, in that case the bug is proven. Yes, that is true .....but why is it so hard to accept that a reaction to the medication might
be proof of a bug in MS? In older times a herx was proof of validity of the value of the medication. It was expected and hoped for.
Most of us maybe never heard of it but what ever happened to people being treated by docs who treat based on symptoms and reactions? Trusting their own instincts and observational skill? Why can't my doc treat me instead of waiting for the pharmaceutical company to treat 350 other people and tally the results before I dare try it? Is it not true that 350 people may be well treated and I as a person may not react well to the drug so tested before I took it? how dare I challenge this disease with abx and see if I get a herx! How dare I assume I, a mere nurse and patient can figure it out! How will I know if I'm better? God forbid I should jog with my grown daughter or ride my bike around the park. I'm probably fooling myself that I do not need a cane.....
If you are using this protocol be sure that you are seen by a doc who knows about herx and talk it over with him or her. I am not offering medical advice just clarification. No one seeing a doctor for their treatment as I am (by the way, a doc versed in herx) should question their treatment based on an uninformed post that suggests a herx is not happening and rather that they are reacting to the drug. Talk it over with your doctor and see what makes sense in your specific case.