This Is MS Multiple Sclerosis Community: Knowledge & Support

Dear all,

One of the most visited areas of this site is on anti-biotics. Sarah (Anecdote) by following her husband's regime has reported impressive improvements. Others are reporting some beneficial changes and some are perhaps too early in their abx regime to report anything.

The question that must be asked is are neurologists taking note and, if not, why not? Sarah has reported improvements in both MRI and clinical measures (EDSS scale). Given that this is not the norm for someone with SPMS, why would a neurologist not be suggesting that others follow the regime? Why would he or she not be reporting the results in neurology monthly or whatever?

The abx regime looks very promising given the early reports of the benefits obtained, but are others seeing anything like the benefits reported by Sarah? Is a poll justified i.e. for those on the abx regime (who have been on it for six months +), have you seen lots of benefits, some benefits, no benefits etc.

What worries me is that lots of people might be filling themselves up with abx (at some cost) without any real data on the success to date of this regime.

I have no view one way or the other on the abx regime, but there must come a stage when there is a weight of evidence or not about its success. Surely if there are 20 having the sorts of success seen by Sarah then neurologists should be taking note. But if these reported successes are few and far between, then those thinking of starting the regime should know about this.

I hope the abx regime does deliver benefits for those with this disease, but perhaps the discussion needs to be more scientific in terms of data e.g. who's started it, who's stopped it and why, who's on it and seeing benefits / some benefits / no benefits. We all need to make well informed decisions when deciding if to start a particular treatment regime. At the moment the information on the success or otherwise of the abx regime is limited.

Bromley

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On Vanderbilt Antibiotic Protocol since January

Bromley,

Neurologists are not taking notice. To understand why not, you have to understand the current paradigm in allopathic medicine, that of "evidence-based treatment", which basically means that doctors only prescribe treatments if they have evidence from large-scale clinical trials. If you want to read about this, just google "BMJ Evidence-Based" and you will find a bunch of full-text article from the British Medical Journal.

This is very problematic, because these trials are often not good science, first of all they are usually very biased by the pharmaceutical companies that run them, and it means that pharmaceutical companies basically decide what will become evidence-based and what will not, with rare exception. Dr. Wheldon's excellent piece in "Hospital Doctor" (http://www.davidwheldon.co.uk/Ignoring- ... dence.html) alludes to some of these issues.

So, it doesn't matter how many case reports you have, or even small trials, until you have a large-scale randomized clinical trial, neurologists will not take notice.

(But, they are complete hypocrities, in that they will prescribe many medications for symptom relief off-label for MS patients that have zero clinical trial evidence. They only object to using clinical reasoning or case reports or suggestive evidence when the intervention in question intrudes upon their main turf- in this case, the idea that MS is an auto-immune disease.)

If you doubt any of what I am saying, consider this: I believe many of the people who log on here regularly have a greater understanding of the potential role of CPn in MS than do their neurologists. They are ignorant and choose to remain so.

I believe Sarah's case could be reported in the form of a letter/case report to a medical journal and I think that's a good idea. But I also know Dr. Wheldon has been working on some articles which contain more in the way of broad information, and I hope he is successful at getting those published.

I'm an aspiring academic and I know how difficult it is to get anything published that is out of the norm. The current medical literature is not very scientific- if you propose a radical new idea, they send your article to be reviewed by scientists who are funded by pharmaceutical companies who are biased against your idea and might even suffer financially if your idea is correct. Of course they will say your paper is wrong. Unfortunately this is the norm in medical literature.

This is an experimental treatment, it has (mild) risks, and Dr. Wheldon has been, as far as I am concerned, perfect in the way in which he has presented his theory and data. He states very clearly that nothing can be guaranteed in any individual and also notes that CPn is probably related to MS in a "subset" of those diagnosed with MS. We have no way of identifying who belongs to this subset- unless you are in a trial at Vanderbilt University. We should all keep this in mind. But I'm pretty comfortable than anyone logging onto this board, if they read closely, will not be misled into believing that this is claimed to be a solution for everyone.

One way to see data, though, Bromley, is to read the patents. There are plenty of data in those patents. Vanderbilt reports patient histories, improvements, etc in these patents. The information is very specific.

If you go to http://www.uspto.gov/patft/index.html and type in patent #s
6,562,582
6,838,552
6,756,369
6,710,033

And read this information, you will find what you are looking for, I believe.
It is the data my rheumatologist showed to me before prescribing the treatment.

I have also authored a long thread at Braintalk that gives lots of information- that's at http://brain.hastypastry.net/forums/sho ... hp?t=52240 and if you read it and follow all the links, by the end, there must be about 12 or 15 patients discussed.

Having said all this, and God Bless You if you've read this far, your call for data is a good one, and an important issue. Perhaps at some point we could arrange a thread where people posted simply their diagnosis, symptoms, and the effects of antibiotics. I have seen this done on Lyme boards before and it can be interesting.

Good post, Bromley- we need to be cautious about being overenthusiastic, at the same time, I think in total, the information put forth has been (mostly) appropriately cautious.

_________________
On Vanderbilt Antibiotic Protocol since January

Bromley, you'll find below some (but not all) of the data from the patents.

From U.S. Patent 6,710,033

EXAMPLE 5

Treatment of MS by Administering Anti-Chiamydial Agents

Table 8 shows the course of therapy for a number of MS patients treated with a combination of anti-chlamydial agent. The case histories for these patients are described in Table 9. Table 10 lists the standard dosages for the drugs listed in Table 8.

TABLE 8
Duration
Patient Sex Treatment Regimen (months) Comments
BL M Rifampin 2
Metronidazole
Ofloxacin
Metronidazole 5
Sulfamethoxazole/
Trimethoprim
Levaquin
3 Discontinued therapy,
had relapse
Metronidazole 2
Sulfamethoxazole/
Trimethoprim
Levaquin
Metronidazole 7
Sulfamethoxazole/
Trimethoprim
Levaquin
Penicillamine
Rifampin 3
INH
Penicillamine
Probenecid
MC M Rifampin 9
INH
Metronidazole
Levaquin 6 Probably not
Minocycline compliant
-- -- Discontinued
JM M Metronidazole 7
Ofloxacin
Sulfamethoxazole/
Trimethoprim
Minocycline
Amoxicillin 4
Levaquin
Sulfamethoxazole/
Trimethoprim
Amoxicillin 3
Levaquin
Sulfamethoxazole/
Trimethoprim
Probenecid
LL F Metronidazole 15
Levaquin
Minocycline
Penicillamine 1
Levaquin
Minocycline
Probenecid
FO M Prednizone 0.25 Phased in over several
days to mitigate
effect of therapy
Metronidazole 2
Clarithromycin
Clarithromycin 1 Stopped metronidazole
due to persistence of
side effects
Clarithromycin 0.5
Kemet
Metronidazole 6 Began phasing
Clarithromycin metronidazole back in
Kemet over a month
Metronidazole 1 Began two week
Clarithromycin switchover to
Kemet Amoxicillin
Amoxicillin
Metronidazole 2
Clarithromycin
Amoxicillin
Metronidazole 6
Clarithromycin
Amoxicillin
Probenecid
JC F Amoxicillin 1
Amoxicillin 1
Probenecid
Amoxicillin 1
Probenecid
Sulfamethoxazole/
Trimethoprim
Amoxicillin 7
Probenecid
Sulfamethoxazole/
Trimethoprim
INH
FW M Penicillamine 7
Metronidazole
Doxycycline
Penicillamine 5
INH
Sulfamethoxazole/
Trimethoprim
Probenecid
-- --


TABLE 9
Patient Case History
BL First symptoms began with numbness of the left arm and leg which
rapidly progressed to a partial
Brown-Sequard syndrome (i.e. cord myelitis) with an associated
urinary retention. Despite therapy with
corticosteroids, and .beta.-IFN, he rapidly progressed over the
next three months with an EDSS = 8.0
(triplegic plus speech and swallowing impairments). A positive CSF
PCR and culture for C.
pneumoniae led to treatment with combination antibiotics. The
patient improved in all aspects of
neurologic function over the following six months. His EDSS score
nine months later was 3.0 with
return to work and routine athletic activities. His neurological
status remains stable and he continues on
an anti-chlamydial combination regimen.
MC This patient had a ten year history of MS with evidence of
progressive ataxia and weakness in the legs.
Over five months his EDSS score worsened from a 7.0 to 8.0. His CFS
was positive by PCR for C.
pneumoniae and he was placed on combination antibiotics. Over the
next six months he gradually
improved in his balance, coordination and lower extremity strength.
His most recent EDSS score was
6.5.
JM Initially seen with rapidly progressive paraparesis secondary to
MS. He failed to response to
corticosteroids on two successive occasions. Five months later, his
EDSS score was 7.5. Following a
positive C. pneumoniae PCR, he was placed on combination
antibiotics. He has gradually gain strength
in his lower extremities and five months later was able to walk
with a walker (EDSS = 6.5) while
maintaining on combination antibiotics.
LL Patient with a long history (14 years) of secondary progressive MS
with recent progressive bulbar
symptoms, axtaxia, and paraplegia (EDSS = 8.5). PCR for the MOMP
gene of C. pneumoniae in the
CSF was positive. She was placed on combination antibiotics with no
further progression of symptoms
for the last six months.
AN Long history of MS and wheel chair bound for approximately ten
years. She has received continuous
physical therapy to retain leg muscle tone. Following approximately
six months of combination
antibiotics, she was able to stand unaided and take several unaided
steps. She reports significant
decrease in fatigue and cognitive dysfunction. She remains on
combination antibiotics and other
supportive medications.
FO Wheel chair bound with a long history of MS with a two-three year
progression of severe dysarthriae
and incontinence. On combination antibiotics (14 months) he has had
improvement of speech and
incontinence. Speech, ability to open mouth for dentist, stamina
all improved. He can stand better on
his own mid-transfer, but remains wheelchair-bound.
JC Diagnosis of MS with development of a foot drop approximately one
year prior to therapy requiring the
use of a cane in walking. Approximately four months after
initiation of combination antibiotic therapy,
patient reports reversal of foot drop and no longer requires a
cane. She continues on antibiotic therapy.
FW Male with a 15 year history of MS. Used a cane for a rolling,
unstable gait. Easily fatigued. After 12
months of combination antibiotics, was able to walk without cane or
excessive fatigue, although his gait
can still wander. Can easily make it across the parking lot, which
had previously been a challenge.
Stopped antibiotics even though was still PCR positive; plans to
restart therapy if he has another flare-
up.


TABLE 10
Drug Generic Unit dosage Daily dosage
Cupramine Penicillamine 250 mg 2X
Amoxicillin 500 mg 2X
Flagyl Metronidazole 500 mg 2X
INH 300 mg 1X
Rifampin 300 mg 2X
Floxin Ofloxacin 400 mg 2X
Levaquin 500 mg 1X
Bactrim SMZ/TMP Double Strength 2X
Biaxin Clarythromycin 500 mg 2X
Minocycline 100 mg 2X
Doxycycline 100 mg 2X
Probenecid 500 mg 2X



The efficacy of long-term administration of combination therapy in the treatment of 11 patients with secondary progressive MS and one patient with primary progressive MS (patient #6) is shown in Table 11. All 12 patients were positive by PCR for the MOMP gene of C. pneumoniae in the CSF. In 10 of 12 patients, the highest Expanded Disability Status Scale (EDSS; Kurtzke, Neurology 33:1444-1152, 1983) score reached was sustained for six months. In patient #1, the maximal EDSS was present for four months and improved when he was treated with antibiotics for urosepsis. The antibiotic regimen in eight of 12 patients was a combination of rifampin (300 mg twice daily), amoxicillin (500 mg twice daily) and probenecid (500 mg daily). Patient #5 discontinued use of amoxicillin after three months and was continued on rifampin alone. Patients #3 and #10 were administered rifampin and levofloxacin. In patient #12, azithromycin was substituted for rifampin in view of the gastrointestinal side effects. Patients #1, #10, #11, and #12 also received .beta.-IFN.

Overall, six patients improved by the EDSS and, in each case, improvement has been maintained for at least six months. Of the six patients who showed no changes on the EDSS, patient #2 had sustained improvement in upper extremity function as measured by the nine hole peg test. In patient #4, the EDSS did not change, but her ambulation index (time to walk 25 feet) improved from 52.8 seconds at the time of institution of antibiotics to 32.5 seconds at time of completion. In patient #8, there was a sustained improvement in his visual acuity. Patient #10 had an increase in her EDSS from 6.0 to 8.0 while on rifampin and levofloxacin.

TABLE 11
Other
Duration of PCR Signal
Patient Age/Sex EDSS Duration Antibiotics Steroids Drugs
Antibiotics EDSS II Improved Post-antibiotics
1 34/M 7.5 3 m Rifampin No .beta.-IFN1b
12 m 6.5 Yes Absent
Amoxicillin
2 36/F 8.5 6 m Rifampin No No 12 m
8.5 Yes Decreased
Amoxicillin
3 49/F 8.5 9 m Rifampin No No 15 m
8.0 Yes No change
Levoflaxacin
4 41/F 6.5 18 m Rifampin No No 9 m
6.5 Yes ND
Amoxicillin
5 54/M 8.0 9 m Rifampin No No 10 m
7.5 Yes ND
6 33/F 8.5 5 m Rifampin Yes No 12 m
8.0 Yes Absent
Amoxicillin
7 57/M 8.5 24 m Rifampin No No 12 m
8.5 No ND
Amoxicillin
8 34/M 3.0 8 m Rifampin Yes Cop-1 12 m
2.5 Yes ND
Amoxicillin
9 38/F 6.5 6 m Rifampin No No 9 m
5.5 Yes Decrease
Amoxicillin
10 25/F 6.0 3 m Rifampin Yes .beta.-IFN 12
m 8.0 No ND
Levoflaxacin
11 26/F 6.0 6 m Rifampin No .beta.1a 6 m
3.0 Yes ND
Amoxicillin
12 42/F 6.0 6 m Azithromycin Yes .beta.-IFN1a
9 m 6.0 No Absent

_________________
On Vanderbilt Antibiotic Protocol since January

I was a bit Daunted(no pun intended) when I was reading all the information on antibiotic use. Mainly because I'm not really sure that misuse of antibiotics might not be part of the problem. This is an opinion only not fighting words by the way. As to Chlamydia pneumonia do you all get tested in the first place to rule it either in or out????? It's like making sure you have an intolerance to gluten before wasting your time eliminating it or bovine products for that matter. We went through all sorts of test that weren't called for in order to identify hubby's specific problems. Once again it is our way of trying to DO SOMETHING to STOP the PROGRESSION. Everyone of us wants the same thing a cure. Another question of interest would be where are you on the EDSS scale when you first start this treatment method. As right now I'm not thinking quite so radical but hubby is only at EDSS 2.5. Just curious as I don't like to leave any stone unturned on all treatments as IMO each one of us needs to take full control of which ever treatment method we choose. I do like the fact that I can come here and see what is helping other's

Daunted,

Thanks for your response. I am in no way trying to discredit the abx regime. Indeed, if CPn is proved to be the cause (or one of the causes) then this will be a major breakthrough. My fear is that an MS sufferer first visiting this site might see the improvements reported by Sarah, and the regime being followed based on the view / theory that MS is caused by CPn, and think great I'll get on the regime and will be seeing the improvements in due course. This may or may not be true. CPn may not be the cause of MS in all cases (or in any).

I'm not sure how many MS patients Dr Wheldon is seeing but there must be a number. How are they doing? To be brutally honest, Sarah is the only one who has reported huge improvements - I'm sure she said that she was heading for a wheelchair and stated that her EDSS was (I think) 8 and had reduced to 2. Again, these sorts of assessments would need to be undertaken by a neurologist. I can't believe that they are all so cold hearted to ignore such improvements in someone passed the RR stage. It would be good to know of others who have followed this regime and seen similar improvements. I just think it's important to stand back and look at the evidence or weight of evidence.

But please don't see me as a doubting Thomas, I'm just concerned that many may be eager to go on the regime given the lack of treatment options, particularly for those with PP or SP, without sufficient information to really understand their chances of getting the reported results.

Bromley

Bromley,

I understand your concerns. I think at some point we should start a thread and consolidate the results of those who have completed the treatment- or discontinued it.

With SPMS and PPMS, I think it has been made clear that results have been mixed and that only in early progressive disease has Dr. Wheldon seen any impressive improvements. He makes specific mention of the fact that the window of opportunity may be quite narrow. The patent does list some progressive folks who did much better, though.

I appreciate your input as I am sure do others, but I think you may be overestimating neurologists. Until their drug rep tells them of a new treatment or sends them on a trip to Hawaii to hear about it, they will remain ignorant of any unconventional treatment. Vanderbilt has been writing about this stuff since 1999. There are articles as far back as 1997 suggesting that CNS infection with CPn can cause neurological problems and it's been linked with MS since about 1998 or 1999.

Yet no one can get their neurologist to test them for CPn, let alone write a script for antibiotics.

I have concluded that the field of neurology is heavily resistant to new ideas, which is exactly the opposite of what one expects from science.

_________________
On Vanderbilt Antibiotic Protocol since January

Well, its the old bug bear autoimmunity, I guess. Even 'my' neurologist isn't taking any notice: I haven't seen him for the last two years. He has seen at least one set of my follow up MRI scans, though, probably all of them. Our local neurology centre, where he is based, is Addenbrookes, of Campath trial fame, therefore auto-immunity reigns supreme. David has written to the Campath supremo, Alasdair Coles, but received no reply.



Six months is not long enough. I didn't even think of posting until after this length of time and after I had seen the results of my second set of MRI pictures. I was only just coming out of a period of extreme pain and discomfort so I might well have thought at this time that I wasn't getting better had I not seen the scans, which included evidence of no parenchymal brain shrinkage as well as no new lesions and fading of existing ones. In fact, I was worried about this on and off for all that first six months. The first thing I really got back in its entirety was my mental clarity, that has only got better since, but everything else was much less clear cut. Some days I would walk amazingly better, then some days I would be all over the place.



Bromley, really! The cost is minimal compared to other things they might be filling themselves up with. Even if you are lucky enough to get on a trial for something or other, someone has to pay, if not you.



In a way, I couldn't agree more, but meaningful scientific data takes years to compile, not six months. They first started working on Campath as a possible treatment for way MS back in the 1990s, and the work is still ongoing.



Thankyou Daunted, but the problem here is that I was not judged to be serologically positive, so I wouldn't be thought to be particularly strong evidence in a case study. CPn is still a very difficult thing to detect and I was probably far more positive than was shown. So what do you do - wait until better testing systems come along, with me getting worse and worse all the time, or jump in an use the empirical route? One thing is for certain: my disease had become so rapidly aggressive, it had to be the second choice.



You can't force people to report. David trained in Neuropathology at Oxford so He does know something. I don't think my EDSS score was quite 8 and now it is about 2. I don't think 'my' neurologist is cold hearted, per se, in fact he has admitted that my improvements are certainly not the norm, but why he won't go further, I don't know.Perhaps if he would give me an appointment I could ask him.



You then said "Yet no one can get their neurologist to test them for CPn, let alone write a script for antibiotics." About the second, don't be too sure!

To Melody:


This is a problem for a lot of things, but for MS, no, and besides none of these abx are misused. David is a microbiologist, so is Charles Stratton. They are fully aware of the misuse of abx: it is their job to know, so don't worry about that.

Sarah, who is rueing the day she first called herself Anecdote.

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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.

When I made this statement it was more in the context of whether the immune system has lost it's path due to things man made so to speak. Environmental as well as vaccine,antibiotic,chemical just to name a few.

"Mainly because I'm not really sure that misuse of antibiotics might not be part of the problem."

I'm new to MS but not to health issues. Hubby was a Martial Arts Instructor and I've always been big on proper nutrition as well as exercise and since most of our food source has been altered due to genetics or break down of soil content and improper rotation of crops we have to also IMO look at those factors. Vitamin content has suffered greatly. We also need to address the fact that we are stocked chuck full of antibiotics due to the content in our meat source. Mercury due to our seas. Your David's credentials are not in question as nor are my neurologist but I need a holistic view myself before I'd even consider going down the path of more antibiotics. Again I see where you started on the EDSS scale but I'd like to see everyone's level it would better explain to me why some choose this particular path. I must admit if hubby was sitting at EDSS 8 I'd be thinking totally different as that's a whole new ball park. Keep posting all your info IMO as it might be as close as we get to understanding. In Canada if I want a test run for hubby I just ask my GP and I will be definitely getting him tested for Chlamydia pneumonia if there is such a test available here. Will keep you posted.

Good luck, let us know if you they will run the Vanderbilt test on CSF for CPn. I am skeptical that this is likely but I would love to hear that neurologists in Canada are willing to do it.

I know of one person, in Canada, at least, who had their GP prescribe her the regimen.

As far as your other comments, I believe in holistic nutrition as well, but if you have a chronic infection such as tuberculosis or chlamydia pneumoniae, those measures may help in the short-term but are unlikely to do much in the long term.

But, this treatment is experimental and I understand caution.

_________________
On Vanderbilt Antibiotic Protocol since January

Maybe tuberculosis is the wrong scenario for me but I was originally from Quebec and half my family the generation before me has had tuberculosis and it was 100% cured by diet and rest as at that time the alternative was to put your child in a sanitarium which I have a few family members who survived that but died since. Odd the ones treated at home 2 which I know well are my Mom and Dad are still alive. Home cures still works for me. Just an Opinion


? Does it have to be the Vanderbilt test has not the rest of the world even heard of it????????????????????????????????Canada is quite in the for-front of MS research

Ok you have my interest just called my girlfriend who is the receptionist for my GP and although she does not know who Vanderbilt is she can order the Cpn test and will in the morning. I'll keep you posted. No stone unturned. I feel like I'm hanging out with the left winger's. Observation only.

Vanderbilt is Vanderbilt University, Tennessee. The test was developed by Charles Stratton, the Associate Professor in Microbiology, and according to one of David's patients, forwarded from there, a charming and delightful person:
<shortened url>
To put it bluntly, the Vanderbilt test is the best at detecting this so called 'stealth pathogen'. Being intracellular it is harder to detect than many. Many places will test for CPn but many will find negative results. I was tested at either Southampton or Bristol, I forget which, but I was found to be sero-negative. So many people would have denied me treatment. 'My' neurologist certainly would have done.
To go back to your previous posting, I agree with you entirely about antibiotics in food. I will only buy meat from sources where I know it has not been stuffed full of antibiotics to make it grow faster or whatever. Besides, this meat might be a bit more expensive but it tastes infinitely better. I think Bromley is a vegetarian, and teetotal, but I think that good quality meat in moderation is a good and easily digestible source of protein, needed for repair of nerves.



Yes, I agree, but not yet, please! Nobody posting here, except me, has been on the treatment for long enough to get over the 'panic' stage. Some people would be saying one thing one moment, another the next. Not Daunted, of course, or several others(!), but not yet, and definitely not a poll!

Sarah

_________________
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.

Melody,

The CPn test that is listed on any medical test list is not necessarily a reliable indicator of whether you have CPn in your CSF. It tests for CPn in the bloodstream, not in the central nervous system.

It can be worthwhile to run it, and see what results, but it surely isn't conclusive, and the only test that is even close is the test that they use at Vanderbilt, a PCR of your CSF. If you read the patents and links, and David Wheldon's website, this is explained further.

I try to eat a very healthy diet and I know Sarah does as well. And Vitamin C, Niacin, and antioxidants are helpful in helping the body rid itself of CPn. However, if you read the patent or Sarah Wheldon's story you will see some dramatic results that in my opinion would not be accomplished strictly through diet or healthy lifestyle. So, I think those things are great, but the antibiotic treatment is a much more powerful intervention.

Of course no one can predict whether it will help a specific individual.

_________________
On Vanderbilt Antibiotic Protocol since January

Sarah- I agree. Eventually I would like to see a thread whereby people explain how the treatment has went for them retrospectively. This would include people who discontinued it due to side effects or lack of efficacy. Of course although Bromley is rightfullly seeking scientific data, this kind of thread is not truly scientific in any way, for we would have no idea how many people actually took the treatment but never posted. But it might be interesting to do this eventually.

_________________
On Vanderbilt Antibiotic Protocol since January