Follow-up visit to Dr. Langsjoen on Friday, July 20th

[cjbrooksjc]

I have my follow-up v to Dr. Langsjoen this Fri. I am not sure what to expect, more testing I guess, but if you have questions you want answered, I will do my best. We leave 9AM our time; it's a three hour drive. I'll check the forum before I leave.

Regards,

Brooks

[Ray Holder]

Hi Brooks
Dr Peter Langsjoen doesn't appear to use carnitine in his trials of Q10 to relieve muscle pain, etc.

I have thought of putting the point to him, but have not got round to it, I wonder if you might bring it up, the Washington University of St Louis gives it as a treatment on their website now.

Dr Langsjoen was very helpful to me 5 years ago, and again 2 years ago when I asked his advice, which he willingly gave, and I am extremely grateful to him and would like to send him my best wishes (if he remembers me)

Ray

[cjbrooksjc]

Ray: I believe I asked about ALC when I had my last visit, and he was non-committal. But, things change daily in this Statin world, and I will ask again and proffer your best wishes as well.

Regards,

Brooks

[Biologist]

Brooks,

Ask him when he or some one else is going to be out with the "Statin Damage Recovery Manual." I don't see it among all the Statin books at Amazon yet. We may be able to write it ourselves in a few years, but I would much rather read it by someone else today!

It seriously crossed my mind today to go see him. But it would be a major effort as I am far from Texas, so it probably will not happen. It also crossed my mind today -- fleetingly -- about writing such a book in a few years. You're retired, and you write. Give it some thought over the coming months. Hopefully you are going to be qualified. But seriously, ask him if he has considered such a document or book for posting or for sale. Is there anything close to it currently existing anywhere that I haven't found?

I would be interested in knowing any typical recovery levels and time-frame data and trends that he may have noted. Asking about cinnamon as a stealth statin would be a good one. He may have never given it a thought though. FYI, more support for the LDL as all purpose transport service: According to"The Heart Revolution" by Kilmer McCully, MD (which I'm currently finishing up) note the following: "Homocysteine is carried in the LDL" Maybe E is too.

Good luck.

Biologist

[cjbrooksjc]

Biologist: I'll ask the ?'s. One thing tho...HDL is manufactured cholesterol leaving the liver, and LDL is returning, excess cholesterol on it's way back to the liver (as I understand the difference), so I guess anything capable can hitch a ride; I'm somehow certain that Vit E does. Still, since HDL and LDL are essentially the same thing,, I guess the ride can be in either direction and can be either via LDL or HDL since the diff is simply directional. I'll ask for clarification anyway; God knows I need it! Thanks for the ?'s.

Regards,

Brooks

[carbuffmom]

Hi Brooks:

Perhaps you could ask him about the connection between statin use and the development of ALS? I still think that's what happened to me. We appreciate your willingness to help us all.

DEB

[cjbrooksjc]

Carbuffmom: I'll ask the ? Deb. OK, that will have to be it. I've got to go now.

Regards,

Brooks

[cjbrooksjc]

Biologist: One thing I forgot to mention: Health Consultant, Johnathan Campbell, wrote a 20 or so page manual on Statin recovery. His web site is *http//www.cqs.com

For Google, the manual is entitled: Natural Therapies for Recovery From Statin Drugs

I'm not recommending the manual, I'm just sayin'...

Anyway, TOGETHER we might consider co-authoring something more substantial that would have enough weight to publish.

Regards,

Brooks

[cjbrooksjc]

Biologist: I just can't seem to get this right... LDL is the stuff going OUT to the cells and HDL is the excess coming back. There. I've said it, and I'm glad.

Brooks

[adec]

You got it perfectly correct Brooks re: LDL and HDL. And thanks for the information on the manual for statin recovery. I read EVERYTHING on which I can get my hands. You never know when a single granule of information will change your focus and direction.

Anyway, if I had only seen your message sooner, and wasn't too busy to formulate some questions. But good luck. I can't think of anyone better than you who deserves to see the best. And Dr. Langsjoen is definitely one of the very best.

[adec]

"Anyway, TOGETHER we might consider co-authoring something more substantial that would have enough weight to publish."

BTW, this is a brilliant idea to organize such an effort... to condense and hone this information into concrete form, a FAQ of sorts. So many smart and eager people collected in this forum would make such a task a relative breeze. I would definitely help with some suggestions of my own, time permitting.

[Biologist]

Brooks,

Here is the order page for the manual and some of the text from the order page. Have you ordered/read it? My guess is that we are probably already aware of 99% (and more) of what he might have to say, but that potential 1% of new insight might be worth it?

*http://www.cqs.com/manuals.htm#lipitor

"Lipitor and other statin drugs (Zocor, Pravachol,
Mevacor, Altocor, Lescol, Crestor, etc.) appear to
be causing a wide variety of extremely serious
degenerative neurological and physical problems.
Some who have taken it report symptoms similar
to Muscular Dystrophy, Parkinson's Disease,
Multiple Sclerosis or ALS - Lou Gehrig's Disease
- in which they are losing neuromuscular control
of their bodies or losing significant muscle mass
(rhabdomyolysis). Others have reported serious
liver and kidney damage. This is apparently a
result of over-restriction of the production of
cholesterol, which is needed for cellular structure,
repair, and regeneration. (For more details about
this problem click here.)

This manual explains how and why this is
happening, and provides a multi-faceted regimen
for controlling cholesterol safely and naturally as
well as nutritional strategies for recovering from
the apparent damage caused by these drugs.
$19.95 plus shipping and handling."

I hope the trip and experience was good today. Looking forward to a review when you are up for it.

BTW, I have often wondered about President Clinton's (aka "President Transfat" per nutritional reputation) experience with statins. I understand (from somewhere) he quit taking Zocor at some point prior to his heart problems and have no idea how long he was on it. If anyone has a good url, post it. I doubt there is anything much to find but you never know -- I did not know about this statin manual.

BTW, a new theory of mine shaping up is that chronic fatigue (and its apparent delay of several hours or a day after exercise) may be centered more on liver and kidney damage somehow, as opposed to the direct inability to produce adequate cellular ATP. That might account for the systemic nature of the fatigue better. Metabolic byproducts of exertion not being process out and thereby "poisoning" the blood (e.g., effecting all blood sampling feed back mechanisms) until the backlog is cleared out by stain impaired filtering organs? How in the world would I know if my liver and/or kidneys are screwed up...

Biologist

[Biologist]

adec, interesting thought.

Biologist

[cjbrooksjc]

I'm Baaack! Visit w/ Dr L. went OK. Nothing new about my condition to report. They took blood to measure CoQ10 levels again; I won't see results until next week. He did say to listen to my heart and if it told me it was getting too much of a workout I should slow down and rest a bit. He did repeat that the heart muscle HAS suffered some damage consistent with Statin-related side effects, and that I should not exert TOO much while the muscle is recovering. Now to the questions.

Ray Holder:
Any opinion on ALC's restorative aspects in muscle wastage situations?
A. He is aware that ALC does work for some, and those who get relief should continue using it. He knows of cases where ALC does NOT make a noticable difference; so, it's recuperative power and value is on a case-by-case basis.
And he does remember you and said to tell you "hello".

Biologist:
Any rumors of a book on Statin-related damage recovery?
A. None that he has heard of.

Any defined time to recovery or trends toward that sort of definition?
A. His experience is all over the board: anywhere from six weeks (approximately) to years with some never recovering everything that was lost. He did say that his study of patients over a two yr period showed the musculature improving first, followed by the resolution of other symptoms, and the final and hardest recovery reserved for neurological side effects. He thought there was some work done in this area by Beatrice Golumb (he wasn't sure of the spelling) of the UCSD study group.

Any common traits among those who recover quickly and/or those who do not?
A. He feels there is some genetic predisposition to Statin over-sensitivity, but that is purely suspicion and supposition on his part, and he could not be more definitive.

Any opinion to Cinnamon as a 'stealth' Statin.
A. This was a left field ball for him and he didn't have any opinion about it.

Is LDL a transport mechanism for CoQ10, ViT. E, etc?
A. Yes, it is. Another problem is that TOO MUCH Vit E interferes with absorption of CoQ10.

Deb: (Carbuffmom) is there any link between Statins and ALS onset or ALS-like symptomology?
A: Yes, there is; in fact, there is a new paper on just that subject: "Statins, neuromuscular degenerative disease and an amyotrophic lateral sclerosis-like syndrome: an analysis of individual case safety reports from vigibase" It's a WHO Foundation paper and one of the authors is listed as
*ralph.edwards@who-umc.org
He is associated with the Uppsala Monitoring Center (UMC) in Uppsala, Sweden. I was able to read parts of the paper and some of the content read is as follows: "... some arguments for considering that a spectrum of severe neuromuscular damage may be associated with Statin use..." and "...Aim of this paper is to present upper motor neuron lesion cases, with other evidence, as a signal of relationship between Statins and an ALS-like syndrome." If those words are not exact, they are very close to exact. Finally, I have not Googled the above information for further clarification and will leave that to you. Good luck!

Oh, yes. Biologist: I HAVE read the manual/paper I referenced and recommend it. It is concise and filled with useful information for any sufferer. I got it just before I went on vacation and only read it through a few days ago.
Some Chapter headings are:
Recovery after statin-induced degradation.
(what to take including a "most important" menu)

FAQ's blah, blah

Vitamin C rundown

Maintenance Regimen for Recovery

Acute Illness Regimen

Safe and Unsafe Cardiovascular Protocols


Nothing startlingly new, but a good encapsulation of useful information. As someone recently wrote, and I paraphrase: "I read everything. Even one little bit of new information may be valuable."

Regards,

Brooks

[Biologist]

Excellent. Thanks, Brooks.

I may have a question or two later on for you to bat around. I had recently come to the conclusion that I indeed must have done some degree of heart damage because my acute symptoms came on right after working out pretty hard (running) on machine, and since that time I have kind of figured it out that that must be the case for seveal other reasons. We always hear that the heart muscle is unique in its not being very good at regenerating itself -- but statin damage could easily be an exception. More typical heart damage is a function of gross oxygen deprivation; ours is mitochodria-related. It seems to me a different animal. His original assurance that you would be back in pre-statin form is encouraging. One question that I want to research better regards the term "heart failure" or "chronic heart failure" and its implications regarding damage and recovery. Lack of CoQ10 certainly can cause this and is probably exactly what we had/have. Many or most cases of it have causes that generally do not remit readily -- and it is therefore ultimately fatal. Our causation, statins, obviously can remit (i.e., we quit statins) so partial or full recovery may be possible. It sounds like that is what we may be hearing. Anyway, I ramble.

Be sure to catch my response to Val in another current thread here in just a minute. Sure is good to have some decent doctors still around like Dr. L. and Dr. Graveline (who is cited in the article / url I'm about to post). Unfortunately I have recently put Dr. Sanjay Gupta (sp?) of CNN solidly in the "corporative bought and owned" category which is easily just as noxious as the "self-imposed ignorant" group comprising most of the rest. For one, his attack on Michael Moore's new movie SiCKO was shameful and revealing. I'm not in any hurry to see it. Probably get it on DVD in a few months. Most of us have been aware of the situation for some time -- me for years.

Biologist

[Biologist]

For posterity, the post is in the "PARKINSON'S AND ALS (LOU GEHRIG DISEASE) & STATIN SURVEY" thread.

Biologist

[cjbrooksjc]

I'll ck your other response to Val. As for Moore, my court is still considering. I personally think he does what he does for one reason: $$$$ BUT, this time I have some skin in the game, so I'll tend to be a little moore forgiving.

Brooks

[carbuffmom]

Brooks,

Thanks for the info. I will google it further. You're the best!

Deb

[Biologist]

I mentioned "chronic heart failure" but meant "congestive heart failure" in my last post -- I knew something didn't look right about that at the time...

Biologist

[adec]

Biologist, Why get pedantic when lives are at stake? That's what I say. We all know what you meant. If we were politicians, doctor, or scientists, we'd spend all day contemplating our navels and the meaning of the word 'is'. But it certainly looks as if you guys have been quite productive and prolific while I was away. I have a lot of catching up ahead of me the next few days.