This Is MS Multiple Sclerosis Community: Knowledge & Support

Hi Sarah and MacKintosh,

I haven't been here lately, so I just read your answers recently. Thank you for that, I really appreciate it.
Sarah, what was your diagnosis when you started the abx treatmant? Were you still in rrms? What are the experiences of your husband with ppms? My problems occured about 6 years ago. I can still walk; however, there is not much strength in my left leg. It gets tired after a short walk, so I have to stop for a while. Were your walking problems similar?

I have to find a way in my country to get prescriptions for the abx. What kind of doctors would be a good choice to supervise this treatment? Is there any test that I can get based upon which a doctor can prescribe the abx? What are the potential sideeffects that I should pay attention to when I start the treatment? Are there any tests for liver, stomach or for somethingelse that I should regularly do during the abx treatment? I guess I should also take probiotics during the abx treatment. Is there somethingelse that I would need in order to guard against the sideeffects of abx?

The CPN ORG website is very useful, but it contains too much info for me as English is not my native language, so sorry if I ask questions that might be answered there.

Thanks,
L

P.S. Is there anyone else who has experience with abx????

Hello L, my diagnosis when I first started abx was secondary progressive and it must have been of about three years duration out of a total of nearly twenty. Te neurologist told David that he would be wise to search out nursing homes. When I started treatment I could just about walk a few feet but had an abhorrence of wheelchairs and mobility scooters.

David has treated a few people with PPMS and I guess the success rate is the same as SPMS: most people do at the very least stop progression. The people who do the best are those with still relapsing remitting but maybe only because they have less residual damage to cope with.

There are lots of people with experience of abx and MS, but they mostly end up on CPn Help rather than here. The most prominent person with PPMS is Katman, real name Rica. You could write to her either here or at CPn Help, but the last I heard she was having difficulty logging on here, so CPN might be better.

I don't know what nationality you are but you write very good English. There are people of many nationalities at CPN: for instance, there is Evita with SPMS, she is from Slovakia.

As for doctors, sometimes your own family doctor will be willing to treat, sometimes not. I can't understand those that won't. If you would like me to send you some papers published about the treatment by Charles Stratton of Vanderbilt University and my husband I will if you PM me your email address. You could show these to a doctor. Since we seem to be going the way that English is going to be the main language of academia, especially science and medicine, most doctors will have enough English to make sense of them. I heard last week the Milan University is going to teach just in English: I don't know what Italian academics think about that!

Side effects: they vary from nothing (Mackintosh) to delirium for a week or so (me, not that I remember!) For this reason it is better if you have a family member or good friend to be with you far a couple of weeks at least. If you are taking rifampicin you should have your liver tested once in a while but you don't need to take rifampicin and any doctor should know what to test for. I was never tested for anything since David would have seen if there was anything amiss.

Let me know if there is anything else you want to know.

Sarah

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An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

Liberation, There are a couple of 'sister' websites to CPn Help.org. What is your home language? It is possible we have a page in your language, or someone who can be of help.

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The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

Hi Sarah,

thank you for your answer. I went through the web sites you recommended, both CPn Help and David's. It seems to me if I find a doctor locally then with tests they would be able to check my liver function, so that risk could be limited.

I am just wondering how this treatment protocol would suit someone who has had urinary chronic infection. Would not it be a problem? I have been treated with prostate infection for years and I took lots of antibiotics for that. That time I took something for a week or two, then stopped for two weeks and get a bacterilogy test and get another antibiotics based on the test results. That time my urologist told me that whenever they get rid of one tribe of bacteria, another one occurs, so a different abx is needed. I think prostate is similar to brain in that aspect that both of them needs lot of time to get rid of the bacteria via abx. His choice of abx was based on the test results and he always tried to change the abx if it was possible to avoid resistance.

As far as I saw most of these antibiotics for CPn are for treating urinary infection as well. So, this week I will go to my urologist and I will ask him about this abx protocol and whether he can recommend someone to prescribe them for me.

Sarah, if you have any supporting study on the lack of abx resistance as a result of treatment, that would be helpful to convince my doctor here. Unfortunately, my options are limited in terms of chosing a doctor as neurologists would not listen to me and my family doctor tries to avoid abx anytime if he can. I think doctors here are afraid of doing anything that is not mainstream, they do not really care if you die as long as they are not responsible for that legally.

Your story is very intriguing and gives people some hope. If you have any short study on success rate that I can show to my doctor, I would really appreciate it.

As for ppms, what should be the results that the doctor should look for to check if the treatment is effective in my case? How long does it take to kick in? I think these things would be important for any doctor who takes on this treatment.

Sarah, thanks again for your help. I really liked your paintings on your website. I am really glad that you had such a nice reverse of the disease.

Lib

P.S. I pm-ed you

I am going to send you a few papers, so thankyou for sending me your email.

Since this treatment uses broad based antibiotics you might find that you are treating lots of things. Several people have been cured of interstitial cystitis, for instance, so I think there will be no conflict with your urinary problems.

Problems with doctors are different, though: There are very few neurologists who will do anything but laugh at this. I haven't seen my neurologist for years,although I do goad him with one of my paintings every year, printed as a Christmas card. Other doctors are as you say, frightened of stepping out of line, even for something that might help a person who has no other options. It makes me so mad!

Well, apart from the papers I was going to send, I also have something that was published in "Hospital Doctor" when I was quite new into treatment.

Now I had better get the papers sent to you.............Sarah

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An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

Hi everyone,

I heard that in the cohort of Vanderbilt patients the response to antibiotics has not been universally positive.
There is some indication that those patients who have at the beginning elevated C. pneumoniaeat the outset “appear” to respond. Did anyone get a base line anti C. pneumonia antibody titer, IgG and IgM? Is it a blood test? Is it easy to get such test if I go to see my doctor? If I have been on the protocol for over a month, would this test be still indicative?

If you are talking about the trial, flagyl was not included so they wouldn't have got a total kill of the germ. Now, patients who request it are treated wth flagyl but many patients give up because of the cost. I know this for a fact from the horse's mouth.

I was tested just once for cpn, three weeks after starting treatment. I measured just 1:64 at a time when it should have shown higher, so I reckon the best test is how you feel rather than how big your numbers are,

Sarah

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An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

Recently, I saw an article on a different thread on fecal microbiota transplantation. In a Australia, they reported three patients with MS diagnoses who achieved durable symptom reversal with FMT for constipation.

http://www.cdd.com.au/pdf/publications/ ... 20p111.pdf

As I am doing the Vanderbilt protocol, I am just wondering how the two things reconcile with eachother. As far as I know antibiotics damages the bacterium flora, while FMT is rebuilding it. At first, it seems contradictory to me.

Is there any probiotics that someone can advice to take with the abx?

It isn't contradictory because probiotics are part of the abx regime: in fact if you don't take any you are likely to fall into trouble.

I have taken many different probiotics but probably the best is Garden of Life's Primal Defense:
http://www.gardenoflife.com/ProductsforLife/SUPPLEMENTS/DigestiveHealth/PrimalDefense/tabid/638/Default.aspx
You must remember to take probiotics two hours apart from antibiotics, which is the time it will take for something to get through your stomach to your intestines. I tend to be rather forgetful of a lot of things but I was very strict about this and therefore had no problems at all.

Sarah

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An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

Thanks, Sarah. Sometimes I forgot to take probiotics, but I will be more careful in the future. Does it cause any problems if I started the probiotics a few weeks later tha the abx?

You would know if you had any problems!!

No, with a healthy diet I should think not. Live yoghurt is probiotic as is live kefir: I have some kefir bubbling away in the kitchen at the moment: it takes three or four days to make.

Sarah

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An Itinerary in Light and Shadow Completed Dr Charles Stratton / Dr David Wheldon abx regime for aggressive secondary progressive MS in June 2007, after four years. Still improving with no relapses since starting. Can't run but can paint all day.

Thanks, Sarah.
I found another interesting article posted here in tims in the general section that also supports the abx treatment from a different angle. The protocol they use is pretty similar to Vanderbilt:

"A lot of my patients have a flare reaction, or Herxheimer reaction, when they change their diet to a low-fat diet. And then I start with tetracyclines -- usually doxycycline or minocycline. I like those two because it hits a lot of other microorganisms at the same time. They’re pretty safe, they’re inexpensive, and both drugs are also antimalarial drugs. They’re used prophylactically and for application for treatment around the world for malaria. So they actually have antiprotozoal activity that most people aren’t aware of.
Then I proceed to azithromycin because that seems to work in some patients. It’s a safe drug. You can take it for long periods of time without major problems. And then on to more of the traditional antimalarial drugs like Plaquenil in combination with tetracyclines -- that’s been done for a long, long time. I think the hesitancy in the rheumatology community for minocycline or tetracycline: 1) is they’re not sure how it’s working, and 2) these patients have a flare or Herxheimer reaction that’s very hard to manage. And that may be one of their observations, not really understanding the underlying mechanism and what’s going on there. "

http://www.iadvocatehealth.org/protozoa ... tion0.aspx

Thanks for posting this link. I've been following Dr Fry's suggestions for the past few months and fund them helpful.
I'm not one of his patients. I just treat myself. I started a couple of years ago with the standard Wheldon protocol and made good progress. However, I've been tweaking it based on my response to different abx.

In addition I have made further progress by incorporating other treatments into my regime. I think that abx alone will take you only that far. And indeed I have found Dr Fry's emphasis on biofilm-forming pathogens very helpful for my progress.

I have a sensitive gut and need a lot of probiotics in order to be able to stand my long-term abx treatment. I use VSL3. I also found raw sauerkraut very helpful for my digestion. I used to take kefir and it was very good but I have recently replaced it with a more complex probiotic drink called MAF878 (mix of yogurt, kefir and other) which is also supposed to stimulate macrophages eating up microbes.

Thanks for the recommendation for the probiotic. Many probiotics are rated as per the number of active organisms, CFUs, that are delivered. However, this formulation does not specificy a CFU count. In contrast, Garden of Life does provide CFU information for their Primal Defense Ultra product. Do you know the CFU count for Primal Defense?

Thanks, NHE