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I am pursuing the idea of antibiotic therapy.

I was diagnosed with MS in 1997, and then had a positive Lyme Disease test a couple of years ago, through Igenex Labs. (Was negative with the usual tests prior to that.)

I have taken antibiotics for infections in the past and never noticed anything I thought was a Herx reaction. Some would say that means I don't have any kind of pathogen causing my MS and/or Lyme. Recently I took Cipro for an intestinal infection. I actually thought I felt somewhat better while on it and now much worse since I stopped it, over two weeks ago. (Don't think it's Herx, because lasting too long.)

I have been afraid of taking specific antibiotics in Lyme Disease protocols, because of the possible Herx reactions. This is one reason the Marshall Protocol appeals to me, as it limits the Herx reactions. (It also appeals because the science behind it fits so much with my experience, labs etc.)

I just wonder what the experience has been, for people who have been on various antibiotic regimens, relative to Herx reactions. Has anyone here been hit so hard that they were unable to care for themselves? Though I haven't had Herx reactions in the past, I have never taken minocycline, (first step in MP), or Zithromax, (used later in the MP), though I have taken Clindamycin, which is used later in the MP. (I had no reaction to the Clindamycin.)
Carol

Hi Trees, When reading warnings or descriptions about herxing, it probably seems scarier than it actually is. The trick is in expecting it and recognizing it when it happens. True, it is no vacation, but it is easily managed. "Managed" doesn't mean achieving a state equal to normalcy, but a state of lessened herx symptoms. Most of the correspondents found in this section are either on the Wheldon or Vanderbilt protocol; herx management advice is available on the websites presenting both of those protocols ( CPn Help and http://www.davidwheldon.co.uk/ms-treatment ).

Whichever antibiotic protocol is followed, herxheimer reactions are unavoidable. There is a positive and oddly reassuring aspect to the experience, though. When it happens, you know that bacteria are being killed...you even get an indication of where they are being killed. You are probably aware that the degree of effectiveness of all antibiotics is not universal with regard to all bacteria. The intensity of the herxing is not the same for everyone, and it also varies according to the manifested illness. The protocol dosages and the scheduled stepping-up of dosages are designed to prevent dangerous levels of endotoxin dumping. Please don't let an unwarranted fear of herxing scare you away from getting the help you need.

Cypriane~caregiver and advocate in Dallas for husband with SPMS (he's getting better)

Cyprine,
It's just that I've read things about people not being able to get out of bed etc., and I live alone,so that kind of herx would be a big problem with no care giver.

I guess there is no way to know untl it's done, and that's what's scary. I just thought maybe I could get some kind of feel for how many people had really debilitating.
Carol

Carol,
I have had MS for 10 years and I am over a 6 on EDSS. I have been on the protocol since April and have only done 2 pulses of flagyl as I am taking it slow to avoid a big Herx. The key is learning to manage it and you will figure this all out as you get started and read, read, read everyones stories.
I had one bad reaction that did keep me home but not bedridden, but I had been in this shape before with MS episodes.
If you have kids to take care of we recommend that you have a back up - family or friend to help you in case you get sick - who helps you now if you get sick?

It is no different than what we have already been through in my experience - I was worried about the same things as you before I started as we do not feel good when we feel good - who wants to be sick.

I am getting better, everything I get back is a true miracle.

Good Luck!

Thank you Wiggy, that was very helpful. I keep forgetting that I can always take smaller doses, and in fact, the MP starts with small doses.

I've never been sick enough to require help yet, so I guess that's another reason I'm worried about it. My kids are grown, so at least I don't have small children to worry about too.
Thanks again,
Carol

Carol, I use the Wheldon regime, developed from the Vanderbilt protocol but using one of the abx that isn't available in the US. I never had any of these awful herxheimer reactions described by various people although I started by taking full doses of everything, so different things affect people in different ways, obviously.

I am very much against the Marshall protocol for MS: it uses doses that really are too small. Also, the combination of doxycycline and a macrolide are used here to avoid the developing of resistance, which although no common with the newer tetracyclines, can happen. The people at Vanderbilt and David are all medical pracitioners specialising in microbiology, so they should know. Marshall isn't. Also, the avoidance of not only vitamin D supplementation but vitamin D in foods is positively dangerous, although I have heard on the grapevine that he has maybe realised this himself now.


Sarah

Sarah,
Actually, I feel that Dr. Marshall has more credentials than anyone who has developed any medical protocol I've seen. And, in fact, that's one of the reasons he got my attention. You are correc t in saying he's not a medical doctor. He's a researcher of molecular medicine with a Phd and has been doing it for many years. While medical doctors have been busy seeing patients, he's been busy doing the research needed to cure these diseases.

Also, the very fact that the MP DOES use small doses, (actually they're only small in the beginning of the treatment), is another reason it attracted me. It uses Benicar to reduce the inflammation and enable the immune system to do some 'bug' killing itself, so less antibiotics are needed. I have researched this to the bottom too, and it's groundbreaking and very safe. (The evidence is there to back it as well.)

He has not let up on his avoidance of D at all! That is the key element to the protocol. Too much 1,25 D in the person's diet is tipping the scale of Th1 diseaase in the favor of the bacteria. The bacteria actually USES 1,25 D levels to proliferate itself, and that is also proven molecular medicine science. That is proven in research that has nothing to do with the MP. The restriction of D is totally based on the levels of D in the patients system determined by testing. How can it be dangerous to reduce levels of something that are too high? My 1,25 D level is 60 and the highest shown to be ok by Merck is 45. Anything over 45 leads to Osteoporosis, which I have, thanks to listening to the MS 'experts' who have us all loading up on vitamin D and thereby feeding the very pathogens that are making us so sick!

The MP directly addresses the avoidance of ABX resistance, and it's one of the reasons that minocycline in particular, but all of the antibiotics in the protocol are used.

I also have a positive Lyme test, and over the years, I've watched people on antibiotic Lyme protocols that just don't cure them, which is another reason the MP is the only one I have considered trying, after researching for 13 years.

I think we need to get this crucial information from the source and not the grape vine, which is very damaging. You have misquoted the whole MP and that's too bad, because there are 3500 members on the MP web site, and countless success stories. It's the first time in 13 years that I have had REAL hope of becoming well again.
Carol

Carol, The staff at Vanderbilt University have been doing plenty of research for many years. You can be both a medical doctor and a practitioner. I take 4000 iu of vitamin D a day, so how come I have managed to rid myself of most of the CPn that was causing my SPMS? My bones are actually also as strong as anything and I have never, ever, broken one.

You might like to search out the various postings about the Marshall Protocol here, but this is one of the best, from September 2004:

http://www.thisisms.com/ftopicp-4999-marshall.html#4999

Unlike sarcoid, where Trevor Marshall has undoubtedly had some very good results, not least upon himself, you don't get a surfeit of macrophages with multiple sclerosis. Also, if like I had, you have very aggressive SPMS, you need to address it full on as quickly as possible to stop further damage. David, as the doctor rather than the researcher, did this and within a few months I was regaining use of my nearly paralysed right arm. A few months later I could resume my profession as a fine-artist. I couldn't paint for a long time at first, and had to stick to watercolours which you do nearly flat on the table, rather than standing at an easel, but before much more than two years were up, I was doing large easel paintings:

http://www.thisisms.com/ftopic-1345-45.html

This is from the Regimens section, where you will find many more people either using the Vanderbilt protocol or my husband's adapted regime.

Sarah

Sarah,
As I said, I have Lyme disease, and I also have VERY high levels of 1,25 Dihydroxy vitamin D levels. I believe I have a different disease process going on than you.

Sure, you may be fine with 4,000 IU D a day. And, if your bones are fine, you probably don't have high levels of 1,25 D, but I do! So, it would be foolhardy for me to add more D.

I took that much too, for years, but because I have a Th1 disease, (Lyme, and there are other Th1 diseases), LIKE Sarcoidosis, my D levels were too high without adding insult to injury by adding more D.

The MP was originally developed for someone with Sarcoidosis, (Dr. Marshall), but in that development it was learned that the key point is Th1 inflammation. That applies to other diseases as well. The MP is a treatment for any disease in which the Th1 part of the immune system is at work. The 'acid test' is whether or not the person's system is mishandling vitamin D, and that's easily determined by simple blood tests.

Your program, (with the D supplementation), would be disastrous for someone with Th1 disease and therefore high 1,25 D levels.

I'm not trying to convince everyone diagnosed with MS to do the MP. Far from it! I was simply defending it from false accusation, because it's a valuable protocol for those who have Th1 disease, and that is undoubtedly the case for SOME people with MS.

I believe it's very unwise to recommend any protocol to anyone without understanding the underlying cause of their problem, or at least doing the testing to see if they have a Th1 disease.

Even my neurologist is now saying, (after coming back from a large neurological conference), they now believe that, within 15 years, 75% of the people now diagnosed with MS will be found to have other diseases. You can't treat them all with the same protocol. You have to determine what you're dealing with first.

I believe the 'diagnosis' of MS is a non diagnosis, obviously. I'm a case in point. I believe it's various other problems, causing neurological symptoms masquerading as MS. In your case it's Chlamydia P., but in my case it's Lyme. For other MSers, it may be something else. How can you bash the treatment that would be best for me, in preference to the treatment that's best for you? I hate to use this saying, but it couldn't be more appropos than it is in this situation, "we are all different".
Carol

OK, if that is what you believe, what are you doing here? Wouldn't you be better off sticking to either the Marshall site or one of the numerous lyme boards? The diagnosis of MS is not a process of non-diagnosis, unless by an inept diagnostician, especially once it becomes progressive. If I wasn't doing some photo scanning work on my computer, I woldn't be answering so quickly, if at all. I just feel you are wasting your time here.

Sarah

Sarah,
I hadn't planned to stay here, and I can see you'd rather I didn't. I just noticed the boards existence and that there were people here treating with antibiotics, and decided to see if I could get some input about peoples' experiences with Herx reactions, since I hope to start ABX soon.

I thought it was an open forum, not a Wheldon forum. Was I wrong?
Why are you so intense about this? Why can't you allow anything other than what you say is the correct way? Because it simply isn't in all cases. Not everyone with MS has CP, and I know that for fact. Have you not seen the studies where brain biopsies have shown that there are AT LEAST 4 etioligies in MS?

By the way, I'm diagnosed with secondary progressive MS. That means NOTHING. It's a nondiagnosis. And, I'm truly amazed that you would persist in thinking of MS as it's own disease, when you clearly claim to have CP, there are no lab tests or any proof of MS. I just don't get it, but that's fine. To each his own, but please leave 'my own' alone.

I wouldn't have all the information I do, if I stuck to just one or two sites, and how is it your business what sites I frequent anyway? I hadn't planned to spend much time here, and I still may not, but I have to say you've made it more likely that I might, because I think it's unfair of you to play gate keeper here, bashing treatments that are helping so many people who don't have CP, and in fact your recommendation of supplementation with D would be disastrous to some of us.

The worst part of all is that you admittedly only did a cursory perusal of the Marshall Protocol site, (read that in the thread at the link you just posted), and yet you condemn it heavily. I have spent hours researching the MP everyday for almost a month, and I can state without hesitation that you do not know what you are talking about when you make the statements you have made about it. That in itself is unfair and it's downright despicable that you would attempt to keep people from benefitting from the MP, in preference to your treatment, which will not work for all.
Carol

Hey Carol, don't let Sarah and her strong opinions in regards to the Wheldon protocol run you off. You're right, this is an open forum, and i'm sure that I speak for the majority of people on here when I say we prefer that it stay that way. We're not here to be dominated by one persons opinions towards a particular protocol that they happen to be on and have been lucky enough to obtain good results from. We're here to listen to everyones opinions, stories, discoveries, and theories. In the end what worked for one person may not work for another. Stay as long as you want Carol and post as much as you like on as many different things involving M.S. you can think of because i'm interested in them all even if Sarah isn't and I know i'm not the only one. Take care.

Thanks Merlin,
Don't know if that's your name or just your screen name, but I like it either way. I had a cousin who I loved with that name and I've always liked the King Arthur stories with Merlin the wizard. (In fact, I used to avidly read all of them I could get my hands on....but there aren't that many.)

I do heartily believe that, what will work for one of us won't often work for others. I didn't used to feel that way, so I can understand someone being vehement about their successful treatment, and thinking it will work for everyone. But, through the years I've seen just too many cases where what worked SO well for one person didn't work at all for another. So, in order for us all to get help, we really do need to be exposed to the various possible treatments, so we can see what fits our situation.

The Marshall Protocol vs other antibiotic treatments is such a good example of this. The MP would not be a good treatment for anyone who doesn't have the excess 1,25 Dihydroxy D levels in testing, but for those of us who do, it makes a lot of sense. (The 1,25 dihydroxy D test is not the typical 25-hydroxy D test, which I actually tested low in.) The more I read about it, the more I could see how well it fit my case. I have never been able to take calcium either because it makes my muscle cramping worse, and have been deficient in magnesium. These are also signs of Th1 disease. I have a friend with MS who tried another ABX treatment and it made her worse. (Not the MP.)

If I can find a doctor to administer the MP, it will be my first foray into the realm of ABX for treating this disease, after 13 years of research and searching for what I thought fit for me. (I'm seeing one Thursday, who I may or may not be able to convince.)

If there are others here who have tried, or are trying ABX, I'd love to hear about their experiences, or is there a good way of searching for that in the archives? (I figure that, if I just put 'antibiotics' into it, I'll just get ALL posts, which maybe I should just read! )

Carol

Carol, just try looking in the Regimens section......Sarah

Sarah,
I just tried a search, and it doesn't look like it's the best search engine in the world, so I think your idea will be better.
Thanks,
Carol