27 Apr 2018
Author
Tommi C
Title

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

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MS CAP 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 antihist

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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 diseases, including MS: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 CAP 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,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 dementia.  Don't know if the study was a retrospective or actual study:http://medicalxpress.com/news/2015-01-higher-dementia-linked-common-dru… 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 CAP 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.

  • Dementia 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 CAP 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 dementia...........Sarah ara 

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

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 MS, 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_diseaseMay 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 cpn 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 CAP 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 ABX 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 CAP 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.

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

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 CPN 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 Oligodendrocyte 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 CAP 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

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

74 y/o male, (mis) dx 1980's, b-/ w-chair bound 24/7, Wheldon protocol. No problems with ABX  Experimenting with 2 weeks on, 2 weeks off Tini pulses. Early glimmers. Life is tough, but I'm tougher . Mission statement:<a href="https://www

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

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

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 Oligodendrocyte 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 CAP 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 MS 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 myelin 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 MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

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 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."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 diseases, 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 CAP 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 MS, 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 CPN and co-infections 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 CAP 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, interesting  and well written...thank you.  :) I increased my vitamin d 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 myelin.  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 CAP 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,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 MS.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 CAP 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.

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

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 supplements, melatonin 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?WinkG.

“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 CAP 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.

PPMS-misdiagnosed 2001-diagnosed 2006. Probably caught cpn in birth canal but it didn't pass BBB until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAP 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.  ABX 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 ABX.  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 CAP 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 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 dementia in old age, for folks who have an aggressive form of MS, the risk may be worth taking.  This whole subject (MS) is bafflingly complex.  Family genetics 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 cap 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.  ABX have some serious risks as well - that most people never experience.Best & Highest Regards,Tom C

Proud Parent of Rick - R started CAP 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 MS 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 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."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 CAP 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 supplements 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 dementia.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 CAP 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 CAP 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