MS CAP Protocol Variation or Add-On: Step 1 CAP, Step 2 - Speed Up Re-Myelination??

MSi CAPi Protocol Variation or Add-On: Step 1 CAP, Step 2 - Speed Up Re-Myelination?

I dream of a day when no person on this planet has to go through what Rick, one of my sons, and many here have gone through.  I think it's possible - and would bet the very first line of defense could end up being Vitamin D3 level monitoring and supplementation when need be from a very early age.  That said, having found the CAP protocol is a wonderful thing.  I believe the next step for Rick that he can take during his CAP protocol - is to add Clemastine Fumarate (an Over the Counter antihistamine!) to his regime, to hopefully "boost" the re-myelination process.  Of all the things I've seen so far, e.g. the other research efforts I've read about and other drugs in development, Clemastine appears to have the most immediate and actionable promise in assiting with re-myelination.  I also believe that it's very likely to be proven true that those who deal with the underlying issues first (a cap protocol) are far more likely to see Clemastine be effective at stoping and reversing their disease than someone just taking Clemastine.

A special thanks to Arttile – who, as far as I know, was the first member of this forum to find articles on the web about Antihistamines and their potential role in re-myelination.  And, to Irene for being willing to share her experience on her CAP protocol combined with Clemastine Fumarate. 

This summary is intended to be posted in cpnhelp.org as well as to be sent to other folks I know with Multiple Sclerosis or with family members, relatives or friends with MS.

I’ll start with a brief review of what I’ve learned over the last 18 months about potential treatment options not currently endorsed by or approved by the FDA and similar institutions world-wide, but none-the-less very much worth considering by someone with Multiple Sclerosis:

  • With the premise that MS may be caused or greatly exacerbated by a common pneumonia germ, Chlamydia Pneumonia (cpn) – many folks at WWW.CPNHELP.ORG< have undergone or are currently undergoing successful treatment with a “Combined Anti-Biotic Protocol” (CAP) along with supplementsi to support ridding their bodies of the toxins resulting from the “die-off” of the suspected germ.

www.cpnhelp.org< – a terrific resource about Chlamydia Pneumonia (CPN), the diseasesi it’s implicated in, it’s treatment, and the experience and wisdom of a group of folks committed to getting better, and helping others get better, by treating their CPN.

MS Cure Youtube< - A moving summary of cpn / cap and Doctor Wheldon's desparate search for a "cure" for MS for his beloved Wife Sarah.

http://www.davidwheldon.co.uk/ms-treatment.html< - Dr. Wheldon’s website on MS.

  • A Neurologist in Brazil credibly claims to have treated about 2,000 patients with a 95% success rate – using Vitamin D3 at very high doses.  Vitamin D3 appears to stimulate production of small proteins in the body that have anti-biotic effects, and thus it appears that the Megadose D3 regimen may be very synergistic or complementary to the CAP protocol.  Use of D3 at the dosages mentioned by this Doctor should likely be done only under the supervision of a Doctor.  Lower doses none-the-less most likely provide significant therapeutic benefit.  Well tolerated high doses are in the range of 5,000 IUs to a high maximum of 20,000 IUs.  Additional supplementsi are advised, in particular Vitamin K.

http://www.vitamindwiki.com/Autoimmune+disorder+patients+in+Brazil+helped+by+vitamin+D+%E2%80%93+video+and+Facebook+%E2%80%93+Nov+2012< – there are lots more articles and a facebook page that can be found.  This subject sparked a rather lively debate on cpnhelp.org for a bit, so a search of forum posts will find lots of information.  Additionally, cpnhelp.org has a special section on the importance and role of Vitamin D 3 here:

http://cpnhelp.org/vitamin_d_1<

Vitamin D3 may be something that can be substituted for N-Acetyl Cysteine<, though this should be commented on by a Physician.

  • Recently, two separate groups (Research Doctors at UCSF, Scripps Research Institute) – have screened already FDA approved drugs using an advanced “high-speed screening” process and identified 8 drugs in the same “class” of drugs that appear to promote the differentiation of Oligodendrocytei Precursor Cells (OPCs) into mature Oligodendrocytes and their proliferation through the brain.  Oligodendrocytes are the cells that re-myelinate axons in the brain and central nervous system.  Subsequently, there was a Phase II Clinical Trial instigated to test the drug on 50 patients and originally scheduled to conclude in September of 2014. 

From all indications a company, www.Glialogix.com< - was formed with the intent to commercialize one of the top 8 drugs identified.  The drug in question is available Over-The-Counter in the US, though supplies appear to be shrinking.

Known by the trade name “Tavist” – Clemastine Fumarate is a first generation “Anti-Histamine” with “Anti-Muscarinic” properties that is very closely related to “Benedryl” aka diphenhydramine.  The dosages being tested in the Phase II clinical trial are 4x the normal daily adult dosages. 

Given clemastine and similar medications have potentially severe side effects, folks who decide to undergo a course of treatment today rather than wait for the results of a Phase III clinical trial should proceed with all due caution and most likely slowly ramp up the dosage. 

(See http://en.wikipedia.org/wiki/Clemastine< and http://en.wikipedia.org/wiki/Diphenhydramine< for some of the adverse and potential toxic effects). 

 In the U.S. Clemastine Fumurate is available at drug stores – including Walgreens, Walmart, CVS, Target and others, usually as a company branded anti-histamine (Wal-Hist for Walgreens version).

The first of the above 3 therapies may provide a means to stop the progression of MS.  Many folks on the forum www.cpnhelp.org< state that treating their disease with a CAP protocoal has halted their disease and in many cases, their disability has improved, sometimes remarkably. 

Given Vitamin D3’s antibiotic properties, D3 may not in itself provide more benefits than the CAP protocol, it may however provide an alternative to the documented “first line of defense” – commonly used by folks on the forum after completion of the CAP protocol to prevent re-infection.  It may, in other words, be something folks can substitute for N-Acetyl Cysteine<, or NAC.

While Clemastine is a very old drug (50 years?) the use of Clemastine to treat MS is of course still very new.  Having said that, Clemastine holds out the promise of speeding up recovery and potentially recovering more than the CAP treatment alone may achieve.  Importantly, Clemastine Fumarate is available over Over-The-Counter now, there is no need to await the results of a clinical trial that might take 5-10 years to complete.

This forum topic for CPNHELP.ORG is to provide more details on number 3 above, as the details for numbers 1 and 2 are well covered elsewhere in the forum.

Research on Anti-Histamine and Anti-Muscarinic Pathways in Ogliodendrocytes:

While most of the research and development in the Scientific and Medical Community seems to have been centered around the premise that MS is an “Auto-Immune” disorder, there are many researchers and organizations (UCSF, Scripps Research Institute, Stanford, others) that have been researching ways to encourage re-myelination in the brain.  Several different strategies are being explored, some quite exotic (stem cells, “small molecules”) and with timeframes for availability to the public likely 5-10 or more years away. 

A very exciting recent development, apparently discovered by at least two different institutions and in close to the same timeframe – is the use of Anti-Histamine Compounds very closely related to Benedryl (diphenhydramine) – including compounds in the same overall family but used to treat Over-active Bladder symptoms, Parkinsons, and other disorders.  

The advantage to the companies that might bring these compounds to the public as FDA approved products is that the safety profile and side-effects are already very well established – allowing them to skip phase I clinical trials and move into phase II and phase III clinical trials much more quickly and without as large an expense.

For those unwilling to await the results of the clinical trials, the advantages are the drugs are easily obtained and most likely without a doctor’s prescription, the risks and side-effects are well understood overall (though not necessarily in the MS population given the special requirements this group may have as well as other medications they may be using – e.g. overactive bladder meds from the same family may represent a risk).  That said, like Antibioticsi, the risks are low and understood, and in the context of MS, the rewards may far outweigh the risks.

Scripps Research Institute’s “high speed screening” of over 100,000 drugs, identified Benzotropine as the top compound.  Benzotropine is used to treat Parkinsons and likely would require a supportive Doctor to write a prescription.  The University of San Francisco’s high speed search identified Clemastine Fumarate (Tavist) as the top compound, along with 7 other compounds, including Benzotropine. 

Clemastine Fumarate is available “Over-The-Counter” – and is at the least still commonly carried as a generic alternative to “Tavist” – by the likes of Walgreens and Walmart, among others.

Clemastine Fumarate - a "Magic Bullet" to help with Re-Myelination?

Clemastine and similar medications appear to have two pathways that may have an effect on Oligodendrocytes.  The first is the “Anti-histamine” pathway.  Histamine is associated with allergic reactions, including over-reactions. 

Clemastine is an Anti-histamine – through being an antagonist to the H1 Histamine Pathway.  The anti-histamine effects appear to turn down the production of Glutamate in the brain, and may be beneficial as too much glutamate can kill brain cells, including oligodendrocytes and other support cells in the brain:

Histamines can cause over production of Glutamate, apparently, and thus an antihistimine seems likely to do the opposite through some mechanism.  I'm sure there are lots more articles out there - but here is one:

http://www.sciencedirect.com/science/article/pii/S001429999700143X< - "Histamine modulates glutamate release ....”

Anti-Muscarinic (muscarinic blocker) -

Using “M3 Muscarinic” as a search phrase, the first research article found in NCBI from 2003:

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1573629/< -

“In conclusion, modulation of muscarinic receptor sensitivity may have functional implications for the developmental progression, terminal differentiation and survival of oligodendrocyte progenitors in response to acetylcholine released by neurons.”

The context appears to be up and down regulation of the sensitivity of Oligodendrocyte Pre-Cursors to an agonist to the M1 or M3 Muscarinic acetylcholine receptors. 

These same receptors were later found to encourage or induce the differentiation of Oligodendrocyte Pre-Cursors into Mature Oligodendrocytes and their subsequent proliferation through the brain:

http://www.biotechdaily.com/drug_discovery/articles/294748738/benztropine_reverses_multiple_sclerosis_in_animal_models.html%C2%A0<

“To identify selective inducers of oligodendrocyte differentiation, investigators at The Scripps Research Institute (La Jolla, CA, USA) performed an image-based screen for myelin basic protein (MBP) expression using primary rat optic-nerve-derived progenitor cells. They screened over 100,000 chemical compounds for any that could potently induce oligodendrocyte progenitor cells to differentiate.

The investigators reported in the October 9, 2013, online edition of the journal Nature that benztropine was among the most effective of the compounds that were screened. Furthermore, it significantly decreased clinical severity in the experimental autoimmune encephalomyelitis (EAE) model of relapsing-remitting multiple sclerosis when administered alone or in combination with approved immunosuppressive treatments for multiple sclerosis.

Evidence from a cuprizone-induced model of demyelinationi, in vitro and in vivo T-cell assays, and EAE adoptive transfer experiments indicated that the observed efficacy of the drug resulted directly from an enhancement of remyelinationi rather than immune suppression. Pharmacological studies indicated that benztropine functioned by a mechanism that involved direct antagonism of M1 and/or M3 muscarinic receptors.”

And:

http://medicalxpress.com/news/2014-07-tool-potential-therapies-multiple-sclerosis.html#nwlt<

http://www.ucsf.edu/news/2014/07/115856/innovative-research-tool-pinpoints-potential-therapies-multiple-sclerosis<

Both of the above studies used “high speed screening methods” – and both identified compounds that have M3 muscarinic antagonist effects.  Clemastine and Benzotropin were two of the top compounds identified.  One, Clemastine – went on to be tested in a Phase II clinical trial:

https://clinicaltrials.gov/ct2/show/NCT02040298< - government side

http://multiplesclerosis.ucsf.edu/research/rebuild< - UCSF

And:

Researchers in Dr. Lawrence Steinman's laboratory at Stanford:

http://www.ctsaip.org/create-pdf.cfm?id=5893< – About “benedryl” – and antihistamines to “ameliorate” the course of MS.  Well - diphenhydramine has known M3 muscarinic blocking effects.  Clemastine belongs to the same family of compounds.

And - Dr. Lawrence Steinman has apparently applied for a patent on the use of H1 Blockers (Antihistamines) - to treat autoimmune diseases, including MS:

http://bit.ly/NRE0BI - this will downloade a PDF article, very arcane.

Irene and others using similar compounds report “dramatic improvements:”

http://www.spacedoc.com/board/viewtopic.php?t=1961<

http://cpnhelp.org/possible_help_ppms< - Scroll down - to quote Irene: “My MSi< symptoms are improving dramatically.”  She is on a CAP protocol and clemastine.

The results of the Phase II clinical trial in UCSF have not been posted, though they were due by November of 2014.  In the meantime – a company has been formed that appears to be poised to commercialize Clemastine Fumarate for “Progressive MS” (including SPMSi and PPMS).  This firm – www.glialogix.com< – talks about their drug in the context of lowering glutamate:

"GLX1112 inhibits a novel drug target present on neuroinflammatory cells that generates excessive glutamate levels in the central nervous system. Excess glutamate levels overexcite neurons and oligodendrocytes, leading to aberrant neuronal signaling and cellular damage. This damage can further exacerbate neuroinflammation. By inhibiting excess glutamate, GLX1112 is designed to block both glutamate excitotoxicity and neuroinflammation. In addition to being neuroprotective, this mechanism of action is applicable to symptoms of progressive MS, including neuropathic pain and cognitive deficits. It is also consistent across multiple neurodegenerative diseasesi< and has been validated in preclinical models of MS, ALS and neuropathic pain."- from Glialogix’ website.

While they make no mention of any M3 Muscarinic Blocking properties for their compound, there are numerous clues that suggest they likely are working to commercialize Clemastine Fumarate to help with re-myelination.  The clues are; 1) Physical proximity to UCSF 2) Timing of their announcements 3) Board Members from UCSF 4) Mechanism of action reported (see above) and 5) Board Members familiar with “high-speed” screening. 

The UCSF trial tested (or is testing) 4x the daily adult dose of Clemastine Fumarate:

Clemastine Fumarate and similar compounds (Clemastine is a member of the diphenhydramine family: http://www.makehumans.com/htmx/H1_antagonist.php<) are known to have some very serious and even potentially fatal side effects (serious and fatal side effects are associated with gross over-dosage, not with normal dosages), so the use of them should be done with caution.  Similar drugs from the same family likely should not be combined (e.g. benedryl and clemastine probably shouldn’t be taken together).  Additionally, warning labels for toxic levels should be read and the cautions observed. 

All that said – 4x the daily dose is 4mg 2x a day – while a member here has decided to go with 2x the daily dose with minimal side effects, which reportedly disappeared after the first week. 

Ramping up and watching for side effects seems reasonable given the potential rewards – e.g. repair of damaged Central Nervous System through re-myelination of demyelinated axons caused by CPN mediated Multiple Sclerosis.

Those unable to find Clemastine Fumarate, or who want to try a lower cost more easily available alternative, may want to consider Benedryl aka Diphenhydramine.  A “trial” may shake out whether it would be helpful or not – and apparently not a long drawn out trial (see the two links that reference "dramatic improvements - above, and in a relatively short timeframe).

To Summarize:

"Clemastine holds out the promise of speeding up recovery and potentially recovering more than the CAP treatment alone may achieve.  Importantly, Clemastine Fumarate is available over Over-The-Counter now, there is no need to await the results of a clinical trial that might take 5-10 years to complete."

My best wishes and prayers that each of you has as fast, smooth and complete a recovery as God and Modern Medicine (cap for cpn) will provide.

Best & Highest Regards,

Tom C

Added the following this morning - posted here again so folks don't need to read through the whole post to figure out what was changed:

And - Dr. Lawrence Steinman has apparently applied for a patent on the use of H1 Blockers (Antihistamines) - to treat autoimmune diseasesi, including MSi:

http://bit.ly/NRE0BI - this will downloade a PDF article, very arcane.

It doesn't appear to be a clickable link - so just copy & paste it into your browser if interested.

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

All of the above raised a question for me today.  I don't know the answer....

The question is - for Oligodendrocytes in a healthy environment (not too much glutamate outside the cells in the brain, for instance, perhaps achieved with the anti-histamine effects of Clemastine, which lowers glutamate through blocking the h1 histamine pathway) - how fast does myelinization occur?  What happens if the "on switch" is pressed, (e.g. the anti-muscarinic effects of Clemastine)? 

An initial search makes it seem fairly promising, with many experiments to measure myelination rate under various circumstances - with the experiments lasting just weeks.  The model used for those experiments seems to be largely the mouse model, but the speed of oligodendrocyte myelination may not be that far off.

Irene reported "dramatic improvements" - over a total of 7-8 months as I recall, but with the mix of ABXi and Clemastine since about September 14....

This stuff (clemastine) - may be a way to "turn on the afterburners," speeding up recovery.

Best & Highest Regards,

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

While I have bought Tavist and will soon try it out, my husband reminds me that the drug trial is not complete and a 4 mg dosage may prove harmful.

PPMSi-misdiagnosed 2001-diagnosed 2006. Probably caught cpni in birth canal but it didn't pass BBBi until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 Stopped 12/12; resumed 12/13

Tavist is available in the UK, and other countries as an OTC medication under the name Tavegil.

Chris

74 y/o male, (mis) dxi 1980's, b-/ w-chair bound 24/7, Wheldon protocol. No problems with ABXi  Experimenting with 2 weeks on, 2 weeks off Tinii pulses. Early glimmers. Life is tough, but I'm tougher . Mission statement:

<a href="https://www

Hi Arttile,

Yeah - I do hear that.  Someone in the forum is on 2x the daily dose rather than 4x the daily dose which is what the trial is testing.

I wonder if the regular normal daily dose would be effective, and would it be more effective for folks who are on CPNi and are therefore dealing with the underlying cause as well as promoting myelination.

Drugs dot com suggests no more than 3x a day for 2.68mg - (really, 6mg of clemastine apparently as the extra .34 mg per "1 mg" pill appears to be from the addition of the fumarate that turns it into a more easily absorable salt form):

http://www.drugs.com/dosage/clemastine.html - the max they suggest is 3x the normal daily dose of 2.68 mg.

There are some fairly serious side effects, most from serious over dosage - of antihistamines.  I think anyone considiring doing this should proceed with all due caution.

At one point Rick said he would just start at the whole 4x a day, and I of course suggested that it might be a much better idea to ramp up slowly.

The other thing I've been wondering is just how much faster folks may see positive results vs. without doing this - and given the drug both lowers "free" glutamate (outside the cells where it shouldn't stay too long) - providing a healthier environment for the Oligodendrocytei Precursor Cells - while at the same time promoting their differentiation through the m3 muscarinic blocking effect that appears to "turn on" the OPCs.

I am hoping that Rick agrees to a trial of up to 2x the "normal" adult dosage - which would still be less than the maximum daily dosage that drugs dot com mentions.  We shall see.

Best & Highest Regards,

Tom C

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

Tom, what is different with tavist to any other antihistamine?  I took triludan regularly before CAPi and I always took about twice the recommended dose, yeti t did absolutely nothing for my MSi...........................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

If I may chip in here Sarah - Tavist is the antihistamine which has been proved to facilitate oligodendrite maturation and myelini genesis.  Irene

Hi Sarah,

Clemastine - was one of 8 different already FDA approved drugs that was found in a "high speed screening process." 

It is in the diphenhydramine family (but that doesn't imply it has identical "mechanisms of action") - of antihistamines and has two mechanisms of action that it appears may play a role in assisting with myelination:

1. The well known "anti-histamine" effect based on blocking the H1 receptor, and thus lowering the "free" glutamate levels.

2. The additional pathway - likely the M3 or perhaps the M1 Muscarinic pathway -and apparently therefore turning on the switch that tells Oligodendrocytei Precursor Cells to mature.

The dosage, and the length of time someone is on a treatment for the above may well come into play too.  If you took an antihistamine for a few weeks - the effects may not have been noticeable for instance.  Plus - the antithistamine you took may not have had the exact same mechanisms of action (m3) - as the m3 receptor is what also causes drowsiness and more "modern" antihistamines may have been engineered to get rid of that effect and pathway.

Best regards,

Tom C

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

Hmm, right, Irene and Tom, but to my mind all the people here who don't have MSi and are thinking of trying the stuff ought to think very carefully about how they might be affected because unless they have advanced alzheimers, or maybe some people with ME their myelini will be intact.  I know it mght be beneficial in other things not involving myelin but so might other medications with far less risk.  One irritating thing is that antihistamines apart from something like triludan make you drowsy, which some people might not mind but others don't want more fatigue than they might already have......................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Hi Sarah,

You are correct about the fatigue - that is one of the end points of the UCSF clinical trial and for exactly that reason.  Many side effects, and for many meds, are temporary, and may be for folks with MSi.

This seems to be one of those cases where the risks are fairly well understood (clemastine has been around for 50 years or more, and is prescribed for folks as young as 6) and the potential rewards immense - particularly for someone with Multiple Sclerosis. 

Folks with upper respitory issues or allergies may find Clemastine to be better or worse than other alternatives depending on how they tolerate the specific medication.  I've tried Clemsatine a couple of times recently - as I use Benedryl regularly anyway - substituting Clemastine for Benedryl because you don't want to accidently double dose yourself!  They really felt pretty much the same.  Irene mentioned she experienced drowsiness early on but that has gone away.

I'll be discussing this today with Richard's (and now my) Doctor in Sacramento.

Best & Highest Regards,

Tom C

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

I tried Tavist -- see my blog.

PPMSi-misdiagnosed 2001-diagnosed 2006. Probably caught cpni in birth canal but it didn't pass BBBi until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 Stopped 12/12; resumed 12/13

Tom, interesting  and well written...thank you.  :)

 I increased my vitamin di dosage...when it is warmer will go back to getting some sun.  Doesn't  that sound great right now?

Also I still take a generic Benedryl at night to sleep....may switch to the generic Tavist.  These are  easy steps to incorporate into my life. 

Terry Wahls uses lithium orotate to help rebuild myelini.  

Its cheap, a salt, and I suspect that it helps my mood.

Have you researched this?

Katherine 

Hi Katherine,

No, I haven't researched lithium orotate - but will now!

Thank you!!

Best & Highest Regards,

Tom C

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

When I first read post of Tom's promoting the use of an antihistamine - one that makes you drowsy - I thought I'd steer well clear of this one.  A few years ago, as a teenager, I suffered from really bad hay fever.  The drugs available then were rubbish; things like Piriton.  I found myself between a rock and a hard place.  Today, hay fever meds are pretty good.

After seeing Tom's hypothesis endorsed by Irene's own positive experience with tavist, I thought to myself, well, perhaps this is worth a go.  A week ago or so, I had some difficulty sleeping.  In the list of supplementsi, melatonin">i is listed as a sleep aid.  I don't have any but I thought why not give Tavegil a go.

A couple of days ago the postman dropped some through the letterbox.  Fifteen minutes ago I popped 1 mg of the stuff.

Here's my question:  If tomorrow morning, I wake up dead, should I blame Tom exclusively or should some of that blame be heaped upon Lucky-Irene too?

Wink

G.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

Supaguy!

First, "waking up dead" would be quite a trick in itself!

Tom C

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

Ha Ha Supaguy.  Please make sure in your will that you donate all your meds and supplementsi to CPNi dot org for distribution to those of us still pill popping Tongue Out

Luky Irene

Folks,

This is important to those considering any drug similar to benedryl or clemastine - anti-muscarinic is aka anti-cholergenic.

Apparently, long term use of anticholergenic drugs can raise your risk of dementiai.  Don't know if the study was a retrospective or actual study:

http://medicalxpress.com/news/2015-01-higher-dementia-linked-common-drug...<

It applies to older people.  For some, that risk may still be very much worth the reward.  Rick for instance may decide that the possibility of a quicker more complete recovery is worth the possibility of his getting dementia in his old age.  Heck if he can live to his old age he will likely see that as a plus!

I've been wondering about one thing around "stimulating" Oligodendrycyte precursor cells to differentiate - perhaps faster than normal.  What I've been wondering about is if there are a fixed or limited number of those gizmos, and if speeding up their activity - with Clemastine, might cause them to run out more quickly.  The above article could be a clue about that.

Ah - just added this thought. The article quotes "significantly increased risk" - but doesn't specify what that increase is.  If your odds are 2 in a hundred, a 50% increased risk (which would qualify as significant, lower amounts would too of course) - means your odds increase to 3 in 100.  This merits further scrutiny!

So - unless I'm mistaken and anti-muscarinic is not the same as anticholergenic - at least it's good to know going in about this potential side effect.

Best & Highest Regards,

Tom C

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

Tom, try biotin.

PPMSi-misdiagnosed 2001-diagnosed 2006. Probably caught cpni in birth canal but it didn't pass BBBi until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 Stopped 12/12; resumed 12/13

Hi Arttile,

Yep.  I'm going to mention and explain both to Rick next week in some detail.  Biotin - aka Vitamin B 6 or 7 - apparently can cause insulin issues.  So, they both can cause issues - things to note for the "risk" side of the risk / reward equation.  ABXi has it's risks to but of course.

I personally think Rick should consider trying both at perhaps 1/4 the dosages recommended as a starting point.  That and add some other sups that are apparently apparently good for supporting re-myelination.  His Doctor recommended lecithin (specifically non gmo lecithin), and I understand zinc might be good to supplement with as well.

Whether Rick will actually agree to any of the above remains an open question.  I'm feeling very positive about his at least being very tenacious and disciplined with his ABXi.  I think the risks are low and the potential rewards are high, he will have to decide whether or not to try the above or not based on what he understands once he takes the time to learn about this stuff.

A 3-6 month trial that could perhaps include ramping up might be enough to see if it is going to help or not. 

Thank you for your suggestion!

Best & Highest Regards,

Tom C

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

More on the "This merits further scrutiny!" comment above.

  • Dementiai Risk - apparently varies by age, with one site reporting about 5% at age 65 increasing to 20 to 40% or on that order for those lucky enough to live beyond 85.
  • More on the article above - it suggests an increased risk of dementia due to long term (3-4 years) and relatively modest dosages of stuff like benedryl - 4mg a day.  Ooops!  I've already done that - well about 3mg - for the last 4 or more years.  The increase in risk is supposedly 65%.  That means that if my risk would normally be about 5 - my risk has been increased to perhaps 8.5%.  So my odds, taking the above alone into account, has increased from 1 in 20 to 1 in about 12. 
  • Well - that sounds forboding, but....  Coffee apparently reduces the very same risk by about 65%!  I drink perhaps 4 cups (two large mugs) - a day, some times 6. 

I won't cite all the specific sources I alluded to above - but here's one that is useful: http://en.wikipedia.org/wiki/Dementia#Epidemiology. < Different studies or reports reported different risk levels.  This one specifically reported 5% of the population over 65, and 20-40% over 85.

'nuff said as far as I'm concerned.  Yeah - clemastine may be in the same group and have the same increased risk - but the risk seems low compared to the potential rewards for someone with agressive MS - none-the-less.  Please believe me when I say I'm not promoting this (Supaguy!) so much as sharing the information I've learned!

Best & Highest Regards,

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

Whatever my age, I would not take anything that increased the risk of dementiai...........Sarah ara 

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Hi Sarah,

I hear you and understand.  I'm guessing that relative to other risks - such as progressive focal luekonencephaly - something you could get from taking Tysabri, that an increased risk of dementiai in old age, for folks who have an aggressive form of MSi, the risk may be worth taking.  This whole subject (MS) is bafflingly complex.  Family geneticsi is likely the single biggest risk factor in dementia - and fortunately I know of no one with that ever. 

Put in terms of Quality of Life - and assuming that something like clemastine could help someone recover significant lost abilities - e.g. someone who is wheelchair bound and facing the possibility of becoming bed-bound or worse, an increased risk of getting dementia in your old age (and getting that old in and of itself may be something someone with an aggressive form of MS may not even get to do under normal circumstances, eg. without capi etc.) may well be worth the reward.

I believe a decision to undertake a course of treatment along these lines is a very personal and individual decision.  ABXi have some serious risks as well - that most people never experience.

Best & Highest Regards,

Tom C

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

Another myelination disease (PMD) - that the researchers at University of California are targeting using clemastine fumarate for:

http://www.sciencedaily.com/releases/2015/01/150122132853.htm

"Unlike MSi, PMD is a genetic disorder, suggesting the need for gene therapy. However, Duncan suspects that simply increasing the number of myelin-producing cells early in PMD might cause myelin formation in the brain as well as the spinal cord, eliminating the need for gene therapy."

Pelizaeus Merzbacher disease - http://en.wikipedia.org/wiki/Pelizaeus%E2%80%93Merzbacher_disease<

May speak to how excited the scientists are with the results they are seeing.  Clemastine has it's risks, but for the right population, those risks may well be outweighed by the rewards.  PMD is aparrently a frequently fatal disease.

PMD is obviously not cpni mediated, what makes this relevant is the possibility of clemastine or similar drugs and approaches (biotin / vitamin h or b7) may offer a means to speed up re-mylination.

Best & Highest Regards,

Tom C

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

Hi Sarah,

I realized that I hadn't answered this question, and that it should be answered for the benefit of future readers.

Here's your question again - and it's followed by the answer.  I'm putting it here again as depending on the settings, the posts may not be in order for folks:

You said: "Hmm, right, Irene and Tom, but to my mind all the people here who don't have MSi<i< and are thinking of trying the stuff ought to think very carefully about how they might be affected because unless they have advanced alzheimers, or maybe some people with ME their myelini<i< will be intact."

My answer: Clemastine and other medications to help with Re-Myelination don't apply at all to folks who don't have MS - or other myelination diseasesi, at all...

It only applies or is relevant to folks with MS or who have friends or loved ones who do.  And, it may really be more or less relevant depending on the severity and aggressiveness of their MS.

Sorry for the late reply.

Best & Highest Regards,

Tom C

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

Thankyou Tom, but I thought you had answered my question several times!............................Sarah

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

Hi Sarah,

These posts don't always appear to be in order - and the specific question I'm referring to is:

"Hmm, right, Irene and Tom, but to my mind all the people here who don't have MSi<i< and are thinking of trying the stuff ought to think very carefully about how they might be affected because unless they have advanced alzheimers, or maybe some people with ME their myelini<i< will be intact."

If I did answer that elsewhere, I couldn't find it this morning!

Anyway - for the sake of clarity and so someone who doesn't need it doesn't consider clemastine etc. - I've included your question and my answer in the post I put in this morning.

Best & Highest Regards,

Tom C

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

Folks,

A quick update - on my discussions with Rick.

Rick took his first 1mg clemastine last night - without having read this, and without a ton of discussion between us.  I'm guessing he is going to stay at that doseage level for a bit and ramp up over time.  I'm also hoping two things:

1. This is a trial - and if it proves helpful, that it continues long enough to give him a boost in his recovery.  He has already added a couple of supplementsi that are supposed to help with re-myelination - lecithin and zinc - and is open to Vitamin H aka b7 aka biotin.  He's not open to the lithium orotate that appears to have some promise here.  I'm hoping he stays conservative with this...

2. That he does read this forum post for the details and understands both the risks, as well as the speculative rewards - and balances the two in his decision making going forward.

Given the risks, if there are no apparent rewards after a period of time, I will of course encourage him to reassess whether to continue them or not.  I think 3-6 months is a good length of time to then reassess clemastine as a possible solution for him.  Well before the 3 years that one of the articles in here talks about as potentially increasing the risk of late life dementiai.

I'm hopeful that this could help him speed his recovery a bit.  I've been trying very hard to temper his expectations so that he has the wherewithal to stick with his CAPi protocol.  He is very eager to get some improvements, fully understands that we are not yet at the point where we are certain in his case that the CAP protocol is going to work for him or not.  The next 2-3 months are pretty important in that if he doesn't have another relapse - as he normally has in this season (jan - mar or  may) - to me that will be pretty conclusive evidence CAP is working for him!

Best & Highest Regards,

Tom C

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

Well,

I actually had a chance to talk with Rick about the above, e.g. to try and communicate what I've learned and the reasoning behind why a trial of clemastine may be called for in his case.

The outcome is that he is going to proceed as follows:

  1. Do a trial - and ramp up - how far to ramp up tbd, but he knows the amounts that were being tested at the clinical trial in UCSF.
  2. Keep the first trial at 3-6 months - and less than the amount being tested most likely.  The amount being tested is 8mg daily (4x the 2mg normally suggested) but only about 2m more than the maximum daily dose.
  3. He may continue after 6 months IF he's seeing some results, but I will caution him against doing it continuously for 3-4 years as that is the length of time that the one study said could lead to an increased risk of dementiai in later life.
  4. He's going to include some other sensible supplementsi to support this - lecithin, zinc, fish oil, etc.

The other thing he's started, and this is a pretty big deal for him - is a consistent exercise program.  He has not been very good at that for nearly 5 years.  This week he did 5 days of specific exercises for him - sitting to standing with help, and sitting to standing and back, using a walker that is steadied for him.  He has already seen some improvements.

I'm hopeful that given he is on CAPi, that he may see some worthwhile additional improvements from his clemastine trial.  This is highly speculative - (CAP had to be speculative at some point in time too though) - with only 2 folks stories so far (a member and an individual who wrote a blog - found by that same member and linked to in this post above) - the clinical trial by UCSF, who hasn't reported the results formally, and the company that I suspect was founded to commercialize this.

The good news is we do understand clemastine's side effect and risk profile, and a short personal and careful trial should mean we avoid the long term dementia risk and most or all of the other known side effects.

I'll post results of all this - within about 3-6 months.  Positive or negative.  I'm of course hoping for some very positive and fairly quick results - based on the length of remyelinationi experiments to measure the speed of myelination - we could see some significant results in a relatively short period of time, perhaps matching Irene's results, which would be awesome for Rick.

Best & Highest Regards,

Tom C

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

Hi Tom,

All of what you write and answers back are so helpful.....you know they ( neuros ) say we don't have MSi, but I can't trust that. My answer to them is - Oh well, maybe not now and don't want it either. I can never figure out why they can say things like that - "it isn't MS, but we don't know what it is - perhaps a previous childhood infection..." Are they kidding?! If I were one - I would be wanting to get at the bottom of it all. I do and I am no doc! I have Lyme and CPNi and co-infectionsi and so these are all to do with myelination!

Thank you again for taking the time and care to post all of this help,

Linda

Hi Linda,

I did not know that part (de-myelination) about lyme disease.

Please, if you are going to undertake a course of clemastine, proceed with all due caution.  Clemastine has side effects, and some can be serious - though mostly with gross over-dosage.  Sleepiness or drowsiness is the most common, so if you drive - it might be best to not do so until you know how you react.

It's a common OTC antihistamine - they all have warning labels, it's probably a good idea to read those before proceeding.

Best & Highest Regards,

Tom C

Proud Parent of Rick - R started CAPi in Nov. 13. Small measurable improvements as of 7/14, more by 10/14.  Holding Steady in early 2017.  "I will leave no stone unturned, no theory unexamined, to help my son." Tommi

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