Simple strategy: Doxycycline for 2-3 weeks, then "pulsing"

[chenman]

I am new to this forum, but not new to the topic.
I suspected MS early in the 1990s, read everything I could find on MS causation = etiology, had the impression that it might be a severe form of late (tick) neuroborreliosis.

However, I have been "sero-negative" on repeated testing in 1991 and following years (twice negative in CFS), whatever this means. (From what I have read - a lot! - I have no confidence in such tests as a means to "exclude" tick (neuro)borreliosis.)

After a try with expensive i.v. ceftriaxone in 1993 and slow return of some symptoms over the following months I read a suggestion to use oral doxycycline (doxy) after ceftriaxon.
After a short course of ceftriaxone in 1995 I started on doxy in Jan. 1996, 3x 100 mg per day for 17 days.

After a long pause (more than a year...) I had the impression that my "problem was not solved / cured": I started to experiment with pulses - and after quite a while came up with just 2 days per month of high dose doxy: 300-100-100-100-100-100 mg at ca. 8 hour intervals.
With this scheme I have stayed until now, more than 15 years - without problems from my disease or the doxy. (Ca. 100x 100 mg = ca. 10 g per year, at "rediculously" low cost. Compare ca. 4000 GB pounds over the first year of the "Wheldon protocol", according to Sarah Longlands.)

I had quite a lot of small scars, up to 3mm, on MRT, done on own initiative and cost in 1995 (that is after the first i.v. ceftriaxone series; no Gd extravasation), low grade bbb impairment, nystagmus and a number of symptoms compatible with MS, but never got an MS diagnosis. (Late in the 1990s followed several new symptoms, which may be the consequence of vitamin B12 deficiency...)
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Could it be that 2-3 weeks of doxycycline stop MS (at least for a time, maybe several months, a year)? I think it could.
The most important argument are the findings of Prof. Gabriel Steiner (1883-1965), who had the hypothesis of a chronic CNS infection with spirochetes about a century ago (in analogy to some patients with late neurosyphilis, clinically indistiguishable from MS).

In 1922 he presented evidence that the hypothetical infection most probably was transmitted by ticks. He developed a silver staining technique to make the very slim spirochetes visible in CNS tissue and started presenting results in the late 1920s, followed by a long review in 1931:
http://link.springer.com/book/10.1007%2 ... 62-28529-9
(Scrolling down you can view two pages each with the start of a new chapter...)

http://www.amazon.com/Krankheitserreger ... 3662270501
"Look inside" allows searches in the whole 200 page book.

There are no translations, as far as I know.

In 1962 G.Steiner published a summary of his life-long work on MS etiology:
http://link.springer.com/book/10.1007%2 ... 42-87571-7
If you scroll down to the chapter "Die Spirochaeta myelo..." and click on "Look inside", then go to the second preview page offered (p.37 in the book) you see 4x4 = 16 microphotos of spirochetes in active MS lesions. Later on they are classified as borreliae.

In ?1981 Willy Burgdorfer discovered borreliae in ticks he had collected, soon idetified as the causal agent of "Lyme disease", including late (CNS) neuroborreliosis - which clinically is indistiguishable from MS.
The conclusion is obvious: G.Steiner discovered B.burgdorferi in active MS lesions as early as the 1920s, including the transmission by ticks.

How is (neuro)borreliosis treated? Well, by 2-3 weeks of doxycycline, 200-300 mg per day, according to several guidelines.

It should be mentioned that G.Steiner in his 1962 book already listed more than half a dozen findings by other independent groups supporting his discovery (but he was the only one to show the localisation of the chronic borrelial infection to the active MS lesions), i.e. Newman et al. from Stanford
http://www.ncbi.nlm.nih.gov/pmc/articles/pmid/13608292/

Since then much more evidence has been published supporting the G.Steiner discoveries, i.e. by the Brorsons and collegues from Norway in 2001
http://www.ncbi.nlm.nih.gov/pubmed/11787831
Dr. Judith Miklossy has repeated the histopathological work of G.Steiner with modern methods (immunofluorescence...) and similar results (personal communication), but unpublished, as far as I know. (Her major work is on spirochetal etiology of Alzheimer's disease, worthy of a Nobel Prize...)

Doxycycline obviously is very effective in MS, even at a low dose of 100 mg per day, see
http://archneur.jamanetwork.com/article ... eid=795219 and
http://www.ncbi.nlm.nih.gov/pmc/articles/pmid/24250865/

ALL this is completely ignored by mainstream neurology!

Here in Germany a number of definitely diagnosed MS patients have tried doxycycline for 2-3 weeks and report improvements (no relevant side effects), as soon as very few days from the start: This is another proof of the theory of Prof. Gabriel Steiner.
I could go on with further evidence, but I think this suffices to demonstrate that MS is a severe form of late (CNS-)neuroborreliosis and can successfully be treated with a relatively short course of oral doxycycline.

Continuous treatment is unknown in tick borreliosis (unlike the various protocols in case of MS, i.e. in the studies mentioned above, or in others with minocycline).
In order to prevent relapses the pulse scheme developed by me might work, preventing the reconversion or rather multiplication of borreliae reconverted from the cystic forms demonstrated in MS CSF by Brorson et al. 2001 (see link above).
---------------------------------------------------

My final conclusion is that MS is an active chronic CNS infection, which should be treated as such.
Of course there is the possibility that other causes might produce MS (McDonald criteria...): we could deal with that once the fraction of CIS and early active MS patients not reacting to "standard doxycycline treatment" has been determined. I expect this fraction to be small...

I already have mentioned that B.burgdorferi might impair the walls of veins, including (varicose) veins on the legs where most ticks bite (in adults):
http://www.thisisms.com/forum/post237741.html#p237741
-- second last paragraph of my post at the end of that page.

Has anyone seriously considered the possibility that CSSVI might be the result of a chronic infecion of the venous wall, namely by B.burgdorferi? I have stated that possibility several times before in German.
Certainly someone in this forum knows some scientist interested in the cause of varicosis and might ask to investigate in this direction? The main impairment of blood flow in the CNS in MS will be at the level of venules and has to be treated by treating the causal infection, I am convinced.
(Btw: is any antibiotic used in venoplasty? Could this possibly explain some of the improvements seen after the "liberation procedure"?)

Prof. Gabriel Steiner suggested to cure (control?) MS by antimicrobial therapy as early as 1922, as far as I am aware. Doxycycline (obviously the agent of choice) has been available for about half a century by now.
50 years after the death of G.Steiner it is high time to test if his vision is valid.
chenman

[chenman]

The results of the longterm double-blind study with 2x 100 mg minocycline per day, conducted in 12 centers in Canada from 2008 till 2015 have been presented at the internat. ECTRIMS conference 2015 in Barcelona / Spain by Prof. Luanne Metz from Calgary on Oct. 10th:
http://www.medscape.com/viewarticle/852565

The UK MS society reported on this presentation, with a few comments of attendants of this presentation:
http://www.ms-uk.org/oct2015
... there were no unexpected safety issues.

Metz concluded that minocycline can reduce conversion to MS, and should be considered for initial treatment as well as for combination therapy trials, given both its safety and low cost.

"This is exciting because it's oral, it's low cost, and we have lots of safety data," Dennis Bourdette, MD, of Oregon Health & Science University in Portland, told MedPage Today. "It would be a good alternative for CIS [clinically isolated syndrome]."

Bourdette was not involved in the study.

"We have a lot of CIS patients who don't want to go on anything yet, particularly the expensive drugs which are either injectable or oral but have side effects," he added. "Some of those patients prefer to just be followed. But if you could put them on minocycline, you'd still follow them and then if they break through, you can give them something else."
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As far as I am aware (including reports of minocycline users on this forum, over the years) minocycline - at least at 2x 100 mg per day - has a tolerability problem (i.e. vertigo, known for decades: that was told in pharmacolygy courses for medical students in the 1980s... 1990s): In the several therapy studies done in or organized by the Calgary group (V.W.Yong... Luanne Metz) they had quite a few dropouts.
I guess that they have a compliance problem with minocycline.

This is not known from doxycycline, as far as I konw. Here is a longterm comparison of mino- and doxycycline from San Francisco, published in 2008:
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2605012/
The comparative risk of longterm use in acne patients was analyzed by the durg surveillance in Australia many years ago: the safety profile of doxycyline was better...

What is new: It might suffice to take doxycycline for only 2-3 weeks, then pause and see what happens. And then decide if "pulsing" might be an option, as I have done for more than 15 years by now.
When I started with a series of i.v. ceftriaxone in 1993 I had cognitive problems (memory, concentration), was irritable... Now these problems have gone, longterm on doxy ("pulsing"), my memory is almost perfect, I sort have become "younger" over two decades instead of older, as would be normal.

In priciple I could have stopped "pulsing" many years ago. However I fear a slow return of symptoms, almost incomprehensible, and possibly in part irreversible on renewed doxy intake.
Maybe sometime in the future this will be clarified by some sort of studies, either retro- or prospectively.
But the cost and risk (including risk for the environment: i.e. sewage treatment plants) is so low with "pulsing" as I do it that I do not see a problem with it, even if it became a standard therapy. That is: I think it is generalizable, if proven effective.

[chenman]

(... ... ...)
My final conclusion is that MS is an active chronic CNS infection, which should be treated as such.
Of course there is the possibility that other causes might produce MS (McDonald criteria...): we could deal with that once the fraction of CIS and early active MS patients not reacting to "standard doxycycline treatment" has been determined. I expect this fraction to be small...

I already have mentioned that B.burgdorferi might impair the walls of veins, including (varicose) veins on the legs where most ticks bite (in adults):
http://www.thisisms.com/forum/post237741.html#p237741
-- second last paragraph of my post at the end of that page.

Has anyone seriously considered the possibility that CSSVI might be the result of a chronic infecion of the venous wall, namely by B.burgdorferi? I have stated that possibility several times before in German.
Certainly someone in this forum knows some scientist interested in the cause of varicosis and might ask to investigate in this direction? The main impairment of blood flow in the CNS in MS will be at the level of venules and has to be treated by treating the causal infection, I am convinced.
(Btw: is any antibiotic used in venoplasty? Could this possibly explain some of the improvements seen after the "liberation procedure"?)

Prof. Gabriel Steiner suggested to cure (control?) MS by antimicrobial therapy as early as 1922, as far as I am aware. Doxycycline (obviously the agent of choice) has been available for about half a century by now.
50 years after the death of G.Steiner it is high time to test if his vision is valid.
chenman

Meanwhile I found this (of 23 August 2012):
http://www.abc.net.au/catalyst/stories/3572695.htm
Close to the end of the transcript:

"Dr Paul Thibault
... ... I don't know why the neurologists aren’t offering them at least Minocycline which has been shown in a number of studies to benefit MS.
(... ...)
The problem is that the antibiotics used have been around for many, many years. They’re all off patent, they are inexpensive, and there is no profit in it.
(... ...)
We’re looking at treating the cause of the disease, and therefore, if we can get patients early enough, we could cure MS.
Narration
Dr Thibault has decided to put Vicki on antibiotics to see if she makes further progress. Like Vicki, David Wheldon knows that clinical trials will take time, and it’s time that MS patients can't afford.
(... ...) "
-----------------------------------------------------------------

I am inable to read all the posts which might relate to this topic.
This gives a hint that there has been a discussion here on TIMS:
http://www.thisisms.com/forum/antibioti ... 63-75.html

Perhaps someone could comment?
(I guess that B.burgdorferi could be found in diseased venous walls, including in CCSVI. I think this is less speculative than to assume that C.peneumoniae is the culprit: pathohistological research is needed.
Anyway: the focus should be on the inflammed small veins in the MS lesions, not on large veins - my opinion / conviction. If B.burgdorferi is responsible a relatively short course of doxycycline most probably will stop the local infection, including the venous vessel walls. No guaratee for permanent cure, but doxy will be effective again in relapses... - or could be "pulsed", i.e. once per month like I have been doing for more than 15 years, to prevent relapses...)

Doxy is oral, cheap and practically without risk.
The "liberation procedure" is invasive, expensive and quite risky / not without risk, as far as I know. And it is not aimed at the cause of MS, in this regard I aggree with Dr. Thibault, if I understand him correctly. (What causes CCSVI? If there is an analogy with varicose veins, most often in the (lower) legs: Nobody is born with varicosis, it develops later in life - this has to have a cause... -- Any comments from the experts: Is CCSVI ?inborn? When does it develop? ...?)

My thoughts about B.burgdorferi impairing venous vessel walls are in an early stage. B.b is known to be able to degrade connective tissue (collagen...), i.e. tendons - why not vessel walls?
chen-man

[CureOrBust]

Meanwhile I found this (of 23 August 2012):
http://www.abc.net.au/catalyst/stories/3572695.htm
Close to the end of the transcript:

"Dr Paul Thibault
... ... I don't know why the neurologists aren't offering them at least Minocycline which has been shown in a number of studies to benefit MS.
(... ...)
The problem is that the antibiotics used have been around for many, many years. They’re all off patent, they are inexpensive, and there is no profit in it.
(... ...)
We’re looking at treating the cause of the disease, and therefore, if we can get patients early enough, we could cure MS.
Narration
Dr Thibault has decided to put Vicki on antibiotics to see if she makes further progress. Like Vicki, David Wheldon knows that clinical trials will take time, and it’s time that MS patients can't afford.
(... ...) "
-----------------------------------------------------------------

I am inable to read all the posts which might relate to this topic.
This gives a hint that there has been a discussion here on TIMS:
http://www.thisisms.com/forum/antibioti ... 63-75.html

As you have found, there is a whole forum on Abx, and therefore there is no need to post long off-topic discussions of such in an insulin thread (not this post, but another). I personally have gone on multi Abx's for 12 moths, with no real resolution of my MS Symptoms. The Abx's (Doxy, Roxy, Mino & Flagyl) are effective against B.burgdorferi. They did not help me.

Chronic infection with B.burgdorferi is a different disease. Its Lyme, and not MS. Now, misdiagnosis of Lyme as MS is a completely different, but valid issue. Correct me if I have misunderstood you, but you are not claiming such, but that MS is actually Lyme? And back in 1922? when the book was written, misdiagnosis of Lyme would of been even more prevalent.

The Dr you quote wrote back in the days before genetic testing and PCR methods were available. Since then, new genetic tests have been performed on MS lesion in cadavers, and B.burgdorferi has not been found in all cases. ie MS is not B.burgdorferi. NB: They have found misdiagnosed cases which were actually Lyme, but do not confuse that with all MS cases being Lyme.

Perhaps someone could comment?
(I guess that B.burgdorferi could be found in diseased venous walls, including in CCSVI.

I live in Australia, and have personally seen this Dr. His assumption was that CPn is causing the Venous malformations, and he now treats with Abx, namely Doxy.

I think this is less speculative than to assume that C.peneumoniae i the culprit: pathohistological research is needed.

I have tried treating with ABX's and in my cases it didn't work.

No speculatuion is necessary. See http://www.neurology.org/content/39/6/760.short and http://jnnp.bmj.com/content/51/9/1215.short Search yourself on google scholar for the latest research which superceeds the unpublished and non-peer reviewed book of Prof. Gabriel Steiner

If B.burgdorferi is responsible a relatively short course of doxycycline most probably will stop the local infection, including the venous vessel walls. No guaratee for permanent cure, but doxy will be effective again in relapses... - or could be "pulsed", i.e. once per month like I have been doing for more than 15 years, to prevent relapses...)

And in my case, 12 months solid on multi ABX's didn't help.

If B.burgdorferi was the cause of MS, they would of found it in PCR tests on cadavers brains. Your Dr's book is old and does not include knowledge garnered since it was written.

[chenman]

This is too long, I will answer (try to...) in parts. (Excuse me: it has become quite long anyways.)

Meanwhile I found this (of 23 August 2012):
http://www.abc.net.au/catalyst/stories/3572695.htm
Close to the end of the transcript: "Dr Paul Thibault
(... ...) "
-----------------------------------------------------------------

I am inable to read all the posts which might relate to this topic.
This gives a hint that there has been a discussion here on TIMS:
http://www.thisisms.com/forum/antibioti ... 63-75.html
(...)

As you have found, there is a whole forum on Abx, and therefore there is no need to post long off-topic discussions of such in an insulin thread (not this post, but another). I personally have gone on multi Abx's for 12 moths, with no real resolution of my MS Symptoms. The Abx's (Doxy, Roxy, Mino & Flagyl) are effective against B.burgdorferi. They did not help me.

Chronic infection with B.burgdorferi is a different disease. Its Lyme, and not MS. Now, misdiagnosis of Lyme as MS is a completely different, but valid issue. Correct me if I have misunderstood you, but you are not claiming such, but that MS is actually Lyme? And back in 1922? when the book was written, misdiagnosis of Lyme would of been even more prevalent.

The Dr you quote wrote back in the days before genetic testing and PCR methods were available. Since then, new genetic tests have been performed on MS lesion in cadavers, and B.burgdorferi has not been found in all cases. ie MS is not B.burgdorferi. NB: They have found misdiagnosed cases which were actually Lyme, but do not confuse that with all MS cases being Lyme.

(My "off topic" text in the insulin thread was (sort of) on request of Lyndacarol; look it up there. I am new to this forum and have to get used to it...)

Roxi(thromycin) has been tested alone twice in MS - without effect (quoted from my memory; if disputed we would have to look for the papers...).
I find it strange that the Wheldon followers do not seem to be aware of this. From what I have read the combination is not well tolerated... (There are a few AB combinations which are ?counterproductive: one AB compromizes the action of the other... - has this been checked with this triple combination - which has changed over time...? Are there any studies done / published?)

I am not "claiming" anything, but cite Prof. Steiner.
I had at least 60 tick bites since childhood, but was seronegative in repeated tests (1991-Jan.1996), had signs and symptoms suggestive of MS (so I diagnosed myself "probable MS", neurologists were not cooperative, I even had to get an MRI on own initiative and cost - only after that a thorough diagnostic workup was done in a clinic in another city 1995...) - but nevertheless had clear effects:
-- Summer 1993: 15x 2 g ceftriaxon i.v. (5x 2 g in 1995 had no obvious effect, as far as I remember)
-- Jan.Feb. 1996: 3x 100 mg Doxy per day over 17 days: cardiac arrythmias disappered (after 5 years), which can be interpreted as elimination of a few borreliae (at most) from heart muscle (intracellular: doxy is effective on intracellular bacteriia, ceftriaxon is not). There is a large epidemiological study from Germany showing cardiac arrythmias as a frequent sign of chronic tick borreliosis, highly significant. I am not aware of an alternative explantation for the resolution of my arrhythmias.

From this we can learn (at least I learned) that cheap doxy can achieve more than expensive i.v. ceftriaxon. Important: 2-3 weeks are ok - not continuous dosing like in acne, Wheldon protocol...
---------------------------------------------

Prof. Gabriel Steiner (1883-1965) wrote quite a few lengthy "reviews", at least 3 on MS (1922, 1931 and 1962) and one on neurosyphilis (1928). He was a clinician (certainly more than 1000 MS patients over decades, both in Heidelberg and later in Detroit), and at the same time he was a neuropathologist, certainly got autopsy specimen from quite a few patients who died in the clinic - in these cases he knew the history, signs and symptoms...
You can be assured that he was one of the best specialists on MS (and neurosyphilis) of all times: He was able to diagnose - and of course knew other demyelinating diseases...

Quote: "... Since then, new genetic tests have been performed on MS lesion in cadavers, and B.burgdorferi has not been found in all cases. ie MS is not B.burgdorferi. ..."
Could you name 1, 2... papers / sources?
MS is not (exactly) neuroborreliosis / NB, I aggree. MS has an undisputed genetic predisposition (which at the time of G.Steiner - ...1962 - was not clear), which most probably is graded, many risk genes involved, poorly understood. (I suspect that the immune defence against B.b is impaired in many cases, which could explain "sero-negativity" in many MS patients...)

If MS and NB are different nosological entities, there should be quite a few cases (in endemic areas with high tick populations) with a double diagnosis, right?
I am not aware of such cases: What would be the diagnostic criteria?
What I "know": MS may be diagnosed only after all alternatives have been excluded - but how can this be if MS and NB can be present in the same patient?!? My feeling is that there is a logical ?contradiction / inconsistency... (I see no need to think about that for longer time: I am convinced - after more than 20 years of intense searching - that NB on autopsy typically is not ?prominent, may result in shrinking of the CNS..., while MS in chronic cases is "easily" diagnosed with the typical scarry / 'hard' lesions.

G.Steiner was absolutely aware of the fact that there is a ?history / development of individual lesions, from active / inflammatory towards scarring. Spirochetes (borreliae) were scarce (unlike many neurosyphilis cases), and absent in MS scars. Because most MS patients die in late stages of the diseae it is obvious that only in a minority of (active) cases borreliae can be found: it is illusionary to expect them in all or even the majority of MS cases.
Dr. Judith Miklossy has repeated the histopathological approach of Dr. G.Steiner (with modern methods) with the same results (personal communication - brief, no details...): borreliae can be found only in a minority of the average MS patients after death. (Nowadays quite a few biopsies are done - but nobody seems to be interested in looking for bacteria / spirochetes...)
--------------------------------------------------------

There are LOTS of other groups who confirmed the findings of G.Steiner with a range of methods - but no one repeated (AND PUBLISHED) his method, histopathology: extremely strange!
With brain banks and modern equipment, fluorescence-marked antibodies of all kinds it should be possible to replicate the approch wiithin days or a few weeks: why is this not done? (Because all neuros seem to be united in the belief that bacteria should not be taken into account when dealing with MS...)

Are you aware of the 2001 paper of Brorson et al. from Norway?
( http://www.thisisms.com/forum/general-d ... c7138.html )
That paper alone is close to a proof that MS is a severe form of NB! (It seems to be ignored by neuros - and even most / practically all MS patients, very strange...)

____________________________________________
For comparison to my experiences 2 decades ago: http://www.thisisms.com/forum/antibioti ... c1729.html
"mrhodes40 Posted: Sat Nov 05, 2005 9:10 pm (... ...) Location: USA
Wow, Patti you have a gem of a doctor! Pondering your issue over the weekend and reading up? That's good! I was diagnosed with MS in '93. I also had seronegative arthritis at the same time- very suspicious for lyme and had taken a long backwoods hike 3 months before that in shorts (I think they're cute with those hiking boots and rag socks ---Fashion first in the woods I always say...) Anyway, the tests were not very good back then and I was negative. I always felt coming down with the particular combination of illnesses (MS and seronegative arthritis) in one week was a bit of a stretch. It always seemed likely to me that lyme was a good choice, in spite of that negative test, because it can cause both issues.
Anyway, I am not much good for your information gathering as my test is ancient and not even comparable to today's panels. In fact, my neuro told me I could not have it because we are not in an area where the tick is (WRONG!)
BLessings
Marie "

[SarahLonglands]

Chenman, £4000? Where did I say that? Roxithromycin was the most expensive of the three drugs I took, but that only cost about two pounds a day. The other two are much cheaper. Also, I have not taken any antibiotic since 2007 apart from a five day course of roxi for an infected insect bite: I haven't needed to and have had no MS symtoms.

Sarah

[lyndacarol]

(My "off topic" text in the insulin thread was (sort of) on request of Lyndacarol; look it up there. I am new to this forum and have to get used to it...)

It seems that I was misunderstood when I wrote:

Since there is no known cause for MS, I am open to any hypothesis and appreciate any information in any direction.

http://www.thisisms.com/forum/general-d ... ml#p237749

It was not my intention to "request an off-topic response in the insulin thread," I was expressing my appreciation for being able to find a myriad of ideas here for my consideration. In my opinion, there is no proven theory for MS. There are appropriate forums for the subjects of most posts here at ThisIsMS. Where there is not an established forum, there is always General Discussion. Like most members of ThisIsMS who probably read all the postings, I find it convenient to have material on the same topic posted together.

[chenman]

Chenman, £4000? Where did I say that? Roxithromycin was the most expensive of the three drugs I took, but that only cost about two pounds a day. The other two are much cheaper. Also, I have not taken any antibiotic since 2007 apart from a five day course of roxi for an infected insect bite: I haven't needed to and have had no MS symtoms.

Sarah

Hello Sarah,
October 10th, 2005 in "Combined Avonex and Doxycycline...":
"...The first year of my treatment cost me about £4000, for private prescriptions and supplements. After that with intermittent therapy, about half that or less. So it seems absolutely stupid not to trial these things, because it is so much cheaper than a CRAB ... ..."
10 years is a long time ago...

Btw: Are you aware that roxithromycin has been tested in MS without effect?
chenman

[chenman]

(My "off topic" text in the insulin thread was (sort of) on request of Lyndacarol; look it up there. I am new to this forum and have to get used to it...)

It seems that I was misunderstood when I wrote:

Since there is no known cause for MS, I am open to any hypothesis and appreciate any information in any direction.

http://www.thisisms.com/forum/general-d ... ml#p237749

It was not my intention to "request an off-topic response in the insulin thread," I was expressing my appreciation for being able to find a myriad of ideas here for my consideration. In my opinion, there is no proven theory for MS. There are appropriate forums for the subjects of most posts here at ThisIsMS. Where there is not an established forum, there is always General Discussion. Like most members of ThisIsMS who probably read all the postings, I find it convenient to have material on the same topic posted together.

I completely aggree. But I am new to this forum, recently did a lot of writing in a German discussion board without any structure, no (efficient) way I know to link to another post there...

I am learning. This forum is sort of a Porsche or Rolls.. - at first confusing / overwhelming, it will take time to use the possibilities efficently.
chenman

[SarahLonglands]

Hello Sarah,
October 10th, 2005 in "Combined Avonex and Doxycycline...":
"...The first year of my treatment cost me about £4000, for private prescriptions and supplements. After that with intermittent therapy, about half that or less. So it seems absolutely stupid not to trial these things, because it is so much cheaper than a CRAB ... ..."
10 years is a long time ago...

Btw: Are you aware that roxithromycin has been tested in MS without effect?
chenman

Hello Chenman, yes I was fully aware about that, as was my husband who had correspondence published in the German journal Infection about it in 2007. Woessner, who ran the trial, gave the correct dose but not for long enough: in fact he pulsed it rather as you are thinking of doing with doxycycline:


http://www.davidwheldon.co.uk/infection_journal.html

Woessner eventually gave rather a feeble reply in the same edition, as though he knew that his approach was wrong.

Sarah

[chenman]

Hello Sarah,
October 10th, 2005 in "Combined Avonex and Doxycycline...":
"...The first year of my treatment cost me about £4000, for private prescriptions and supplements. After that with intermittent therapy, about half that or less. So it seems absolutely stupid not to trial these things, because it is so much cheaper than a CRAB ... ..."
10 years is a long time ago...

Btw: Are you aware that roxithromycin has been tested in MS without effect?
chenman

Hello Chenman, yes I was fully aware about that, as was my husband who had correspondence published in the German journal Infection about it in 2007. Woessner, who ran the trial, gave the correct dose but not for long enough: in fact he pulsed it rather as you are thinking of doing with doxycycline:


http://www.davidwheldon.co.uk/infection_journal.html

Woessner eventually gave rather a feeble reply in the same edition, as though he knew that his approach was wrong.

Sarah

Hi,
I admit that the negative roxithromycin study results in MS are no 100 % proof that Cpn is NOT the MS cause. (When is an analysis of a number of treated cases to be expected?)

But there are so many arguments against the Cpn-hypothesis (as the - or a major - cause of MS) that I hardly know where to start.
Just a few examples:
(-- Textbook knowledge: the basis for MS is ?laid in childhood until about 15 years...: we have to look for external causes in this time span, childhood and (early) adolescence.)

----- MZ twin studies (i.e. from Sweden 2014) show that the (typically) common environment - home, kindergarten, school - is without relevance for MS risk. What remains: some accident-like event outside, which hits one of the twins, but quite rarely the other (risk 15...17% in Sweden).
Cpn respiratory infection is easily transmissible, certainly among twins / within their family: it is practically impossible that such an infection can be the cause of MS with a discordance rate of >80% in MZ twins.
The same applies to the Faroer "epidemic(s)" following British troops taking over in ?1943.

The probable explanation are tick bites causing an infection, almost certainly with borreliae.
It can be speculated that a dog or other animal of the British troops carried at least one infected tick which "imported" this infection into the island group. (The inhabitants certainly would have "imported" Cpn from visits to other countries, if Cpn was not endemic to the Faroers already for centuries.)

----- The research of Prof. Gabriel Steiner has shown the causal infection within active MS lesions, from the late 1920s onward, I have posted the links to the sources (review 1931, book 1962): borreliae, which are transmitted by ticks (G.Steiner review 1922). However, this has been ignored ever since - I seem to be the ?only one spreading this information, or rather trying to spread it since many years.
The G.Steiner discoveries meanwhile have been supported by findings of many other, independent groups, i.e. http://www.ncbi.nlm.nih.gov/pmc/articles/pmid/13608292/
http://www.ncbi.nlm.nih.gov/pubmed/11787831
The latter paper in itself is close to a proof that B.burgdorferi is the cause of MS (at least in Norway, but near certainly around the world).

----- Is there anything comparable concerning Cpn and MS, i.e. pathohistological evidence of Cpn within or near the inflammed small veins in the CNS, Cpn in active MS lesions? I think there has been ample time to search for Cpn in MS brain tissue from brain banks...

----- Alonso et al. 2006 tested the hypothesis that chronic Cpn infection might precede MS diagnosis: http://aje.oxfordjournals.org/cgi/pmidl ... d=16597708
They found that MS could be prevented by about 50% by a ß-lactam treatment (for whatever reason) for a few weeks in the years before MS diagnosis. ß-lactam AB are ineffective against Cpn (as far as I know - all cited from my memory...).

------ The geographic epidemiology of MS can easily be explained by the combined effect of the regional prevalence of hard ticks (which can transmit B.burgdorferi) and the genetic susceptibility for MS of the population at risk. (Important: MS risk is much lower in Alaska compared to the Pacific coast further South, or Northern compared to Southern Norway: (to me) it is inconceivable that this ?disparity could be explained by the respiratory pathogen Cpn.
(I could go on with more arguments...)

Taken together this evidence is 99,x% proof for B.burgdorferi being the (almost) ?universal cause of MS (Brorson et al. 2001: 10 of 10 MS CFS samples showed evidence of B.burgdorferi - and one of five control samples, this one from a person with a chronic B.burgdorferi infection).
This extremely important paper is ignored in the same ?way as the G.Steiner documents, despite the fact that the Brorson paper is written in English and contained in PubMed, the abstract open to everyone via the internet. (The most important publications of G.Steiner are written in German, with no translation available, as far as I know, which is sort of an excuse for researchers / neurologists not able to read German...)
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A number of persons with definite MS here in Germany have done a test therapy with 2-3 weeks of oral doxycycline ((100...)200... mg/d), without adverse effects, with individually varying positive effects within days of starting this therapy:
This is a strong argument that MS is caused by an active CNS infection quickly responding to doxycycline: this almost certainly is B.burgdorferi, as found and documented within active MS lesions by G.Steiner over about 3 decades (ca. 1930-1960), and cultivated by at least 2 groups from CFS of MS patients before 1960 already.

The question is open how long such a treatment has to be minimally. Doxycycline can kill B.burgdorferi in culture within 1-2 days. A single 200 mg dose of doxy has been shown to prevent B.b infection if taken within 3 days after a tick bite. Because of the long serum half life time of doxy it could act for 1-2 days in the skin of the persons bitten, similar to the "kill kinetics" in vitro.

Cpn is transported by leucocytes / macrophages, certainly including the CNS in MS: I suggest that Cpn found in CSF might result from such transport, not proving at all that Cpn is the cause of MS.
What counts is the documented finding of borreliae within active MS lesions; everything else (i.e. the Brorson et al. findings) is - more or less - supporting the histopathologically localized B.b infection.
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We now can envision stop of the causal infection as early as possible (CIS...), with 2-3 weeks of very well tolerated doxycycline, possibly even for a shorter time (i.e. a week, cf. the European triple therapy for eradication of H.pyloris as an example).

Because the doxy-insensiive cystic B.b structures shown by Brorson et al. 2001 in CSF of 10/10 MS patients a strategy has to be devised to prevent relapses from such "persisters".
One possibility might be the "pulsing" for just 2 days once per month, as I have successfully done for at least 15 years by now, and an SP-MS woman in California for more than 2 years by now. Short (one dose?) pulses with bactericidal metronidazole might be another option... (but this drug has a carcinogenic risk)...
chen-man

[SarahLonglands]

Look, do whatever you want to do but I was not infected with burgdorferi at all, I had tests to prove it, but I had progressive MS and since being treated for a year full time and three years intermittently with doxy, roxi and a nitroimidazole, not only have I had any new MS symptoms but most have gone away: my right hand is no longer paralyzed so I have resumed my occupation. I was also tested for Cpn and I was infected with that. I can't imagine taking anything for fifteen years, whether full-time or pulsing. I think that applies for the other people treated by my husband, one of whom has gone from being uneducable at thirteen, to currently approaching the end of her MA at Oxford University.
Sarah

[chenman]

My sincere congratulations to you, your progress is really remarkable, Sarah.
If I understand and remember correctly over the frist 3 weeks in 2003 you took just 200 mg doxy per day (roxithromycin not yet available) - and already experienced ?massive progress, right?

Can you imagine that doxycycline alone could do the work?
(The pulses I do - with 10 g per year, compared to 73,x g in your protocol, at least during the first year - are a precaution against relapses. Please read and understand the Brorson et al. 2001 paper. Do you think that MS in Norway is something special? Elsewhere Cpn is the cause and has to be treated with a 3AB combination over years? Why is minocycline alone effective (see below)?)

My goal is to prevent MS, if possible. Therefore we need an effective and low risk and low cost therapy for CIS. (I am not aware of a strong association of CIS with preceeding respiratory disease, characteristic for Cnp infection. -- The base for MS is ?laid until about age 15...)
Could the "Wheldon protocol" / CAP be an option for tens of thousands of CIS patients around the world? I don't think so (many would be too poor to pay for it...).

Now consider the successful double-blind study from Canada:
http://www.medscape.com/viewarticle/852565
That is "EBM", proven effectiveness; we still have to wait for the full publication. I recommend (as a pharmacologist, about 4 decades at a university) to better use doxycycline, as explained time and again.

Nobody has to believe in the findings / discoveries / arguments of Prof. Gabriel Steiner (1883-1965). All the neuro studies done with mino- and doxycycline over the past ca. a dozen years ignore the G.Steiner discoveries, are based on the assumption of an MMP inhibition, and some vague "anti-inflammatory" effect. (See for example http://www.medscape.com/viewarticle/852565 to get an idea of what doxy might be up to do.)
It is irrelevant how a drug acts, if it is effective, from the perspective of the person seeking help. (Scientific minds however want to know: it might be possible to improve the therapy with etiological and mechanistic knowledge, might even be possible to stop the disease altogether, as has been done with smallpox (eradicated 1979), plague and cholera, diphtheria, tetanus, syphilis, polio and and and.)

It is nice to paint. In younger years I did a lot of photographing. But after seeing MS patients getting worse, progressive, severely disabled, dying, I have changed my priority:
I am fully convinced that now we can stop MS early, most cases (we have to find out...) - but that will not happen all by itself, has to be "pushed" / promoted. It is frustrating to learn that - up to now - I seem to be the only one promoting something like 2-3 weeks of oral doxycycline for a start. Risk and cost are almost negligible: why not start a campaign to make it popular?

What is your suggestion to someone with CIS? Wait?
chenman

Look, do whatever you want to do but I was not infected with burgdorferi at all, I had tests to prove it, but I had progressive MS and since being treated for a year full time and three years intermittently with doxy, roxi and a nitroimidazole, not only have I had any new MS symptoms but most have gone away: my right hand is no longer paralyzed so I have resumed my occupation. I was also tested for Cpn and I was infected with that. I can't imagine taking anything for fifteen years, whether full-time or pulsing. I think that applies for the other people treated by my husband, one of whom has gone from being uneducable at thirteen, to currently approaching the end of her MA at Oxford University.
Sarah

[SarahLonglands]

I don't suggest anything to anybody: I just wrote about what happened to me and what was eventually done about it. My qualifications are many but they are in art rather than medicine so I am not qualified to suggest anything. People can read what I write and decide for themselves what to do. The point of taking roxithromycin or azithromycin with doxycycline is to maximise the effects as well as help to avoid developing resistance which one antibiotic by itself is more likely to develop. You as a pharmacist should know that.

Someone with a CIS might well do what I did when I had mine at the age of 24. I guessed then that it was MS but I then went for nearly twenty years without treatment and did more in that time than many people ever do. Better that than being labelled as a cripple from a very young age. There are so many MS drugs available now for the newly diagnosed person with RRMS that most people are happy to follow the advice of their neurologist. Most of David's patients have secondary progressive MS and come to him when the profession abandons them.

Sarah

[chenman]

I don't suggest anything to anybody: I just wrote about what happened to me and what was eventually done about it. My qualifications are many but they are in art rather than medicine so I am not qualified to suggest anything. People can read what I write and decide for themselves what to do. The point of taking roxithromycin or azithromycin with doxycycline is to maximise the effects as well as help to avoid developing resistance which one antibiotic by itself is more likely to develop. You as a pharmacist should know that.

Someone with a CIS might well do what I did when I had mine at the age of 24. I guessed then that it was MS but I then went for nearly twenty years without treatment and did more in that time than many people ever do. Better that than being labelled as a cripple from a very young age. There are so many MS drugs available now for the newly diagnosed person with RRMS that most people are happy to follow the advice of their neurologist. Most of David's patients have secondary progressive MS and come to him when the profession abandons them.

Sarah

Ok Sarah,
that sounds reasonable, not to suggest anything to anybody.

I'm a (retired) pharmacologist, a medical subspecialty. Antimicrobial combinations are used in special cases, i.e. in the long-term treatment of chronic infections to avoid development of resistances, best known in Tbc and AIDS.
I still have to be convinced that Cpn is the (or an important) cause of MS. The logical proof would be by pathohistology, that is demonstration of Cpn within MS lesions (but not in normal CNS tissue).

I ?turned up the forgotten / ignored Prof. Gabriel Steiner (1883-1965), who was at the University of Heidelberg until 1933, when the Nazis fired him because he was a Jew. He emigrated to the US, became a neuro-professor at Wayne University in Detroit and in 1962 published a book summarizing his decade-long research on MS etiology:
http://link.springer.com/book/10.1007%2 ... 42-87571-7

If you scroll down to chapter "Die Spirochaeta myelo..", click on "Look inside" and go to the second page (p.37 in the book) you see what I mean with histopathology: documentation of (causal) bacteria, in this case spirochetes, in active MS lesions in the CNS.
G.Steiner had had a hard time to get such micrographs because those spirochetes, classified as borreliae, are very slim, below the resolution of light microscopy. (He developed a silver staining technique, similar to black & white photography.) Cpn should be detectable more easily.

Nowadays there are advanced methods, i.e. immunofluorescence: Specific antibodies are coupled to flouorecent dyes and will light up with UV illumination. Even the sub-species of B.burdorferi (s.l. = sensu lato) can be diagnosed within the tissue by using appropriate specific antibodies (if available - but that should be a minor problem these days).

For some reason this seems to be of no interest to presentday neuropathologists / neurologists who tell us all the time that the cause of MS is "unknown" - consequently no causal therapy possible.
(Dr. Judith Miklossy and others - A.B.Macdonald as well as G.Riviere and their co-workers - have shown spirochetes in Alzheimer brains, mostly "mouth spirochetes" according to Judih, the "rest" B.burgdorferi, but the mainstream simply ignores all that: There seems to be almost universal aggreement that bacteria shall be ignored as (possible) cause of chronic CNS diseases / disorders.)

What do you (or your husband) think about the recently finished double-blind minocycline study from Canada?
http://www.medpagetoday.com/clinical-co ... osis/54038
http://www.medpagetoday.com/MeetingCove ... RIMS/54042
http://www.emaxhealth.com/1275/generic- ... -sclerosis

http://www.medscape.com/viewarticle/852565

Some time ago this study (which started in ?2008) was discussed here, results were eagerly awaited, but now nobody seems to be interested any more? Quite strange...
We still have to wait for the regular (long) paper, which may take some time. But what is known already in my eyes is sensational: It might be possible to prevent MS before it is diagnosed, or probably (possibly?) stopped right when it is diagnosed..
chenman