PARKINSON'S AND ALS (LOU GEHRIG DISEASE) & STATIN SURVEY

[Brian C.]

For Biologist and anyone else with similar expertise only :

*http://www.genesifter.net/web/Illumina_statin_muscle.pdf

It's simvastatin (Zocor) that is the villain re gene expression according to this study, atorvastatin seems positively benign in comparison.

It's Zocor that is available over-the-counter in the UK!

Brian.

[carbuffmom]

Hi Biologist:

Thanks again for your informative reply. I guess I am glad that I tried the Rilutek. I know now it's not for me. I bet the doctor will try to put me on a reduced amount again in Sept. I see the local neurologist here in August. My brother-in-law's co-worker was not a statin user but has ALS.

I am glad that you are doing better. It sounds like you are on the right track. I cannot lay out in the sun either. I have tried three times. Afterward, I feel weak and out of sorts. I have given it up.

I have been off statins since November of 2005. I started taking them in 1992 at 35 years of age. (Bad family history--My dad had a heart attack at age 41 and died at 60 waiting for a transplant and my younger brother died of a heart attact at age 37 after having quadruple bypasses at age 35.) I started on Mevacor, then Lescol (bad stomach problems there), was switched to Zocor at 20 mg and then to 40 mg. Zetia was added in 2004---20 mg of Zocor and 10 of Zetia. That's when the problems started. Muscle cramps mostly---was told to continue because my numbers were so good. I was then switched to Vytorin 20/10 and went downhill from there. (Jan of 2005)

I have not tried DHEA or Vinpocetine. I will give them a google. I am willing to try just about anything. I will get some of the Jarrow Ubiquinol when my other stuff runs out. Where do you get it from? I will try dissolving the NADH under my tongue to see if it makes a difference. How much do you take? I only take 2 grams of ALC but I take L carnitine 1500 mg too. Do you think acetyl is better? Do you take creatine AND the other supplement too? I use grape juice also.

As always, I appreciate your concern and your wealth of info. I have decided that I have statin toxicity and not ALS. My husband keeps telling me it's not ALS. Perhaps that will be a catalyst to my recovery. I can't tell you how much I miss running and working out at the gym. It was such a good stress reliever! Oh well, I continue to walk and ride my bike a bit and do range of motion exercises. I don't know if it helps or hinders recovery.

I wish for you continued recovery and a great weekend.

My best, DEB

P S--Vitamin C is back in my regimen also---I have developed a terrific head cold----How does one get a cold in the summer?

[carbuffmom]

Biologist:

I also wanted to add that I drink bottled spring water, also. I try to avoid artificial sweeteners. I need to improve my diet. I think higher protein is better complemented by fruits and veggies. I need to give up the bread! I have an occasional beer or a glass of wine with no real repercussions. Do you avoid dairy?

I have started taking milkseed thistle again to help cleanse my liver after the Rilutek debacle.

Enough for today. Enjoy your Sunday. DEB

[Biologist]

Brian,

Nice find. Here are my comments:

http://www.spacedoc.net/board/viewtopic.php?p=5180#5180

Biologist

[Biologist]

Deb,

Do you have any idea what your cholesterol levels are now? What were they when you started, if you remember. I have not had mine checked since I quit in November 2006. BTW, my ALS symptoms came on almost out of the blue while I was recovering after starting large doses of cinnamon. I give 90% odds that that is what did me in as I was in a particularly sensitive state at that point in recovery, as has previously been discussed (i.e., the "rechallenge phenomenon," etc.).

* CoQ10 -- This is where I get mine and is the exact type (recommended by Brooks). I suggest fastest delivery in summer months:

*http://www.iherb.com/ProductDetails.aspx?c=1&pid=7883&at=0

* DHEA. Probably a good idea. It is a light weight natural hormone-like molecule which drops off with age. It is not in the league of Human Growth Hormone which is substantial and also difficult to get, I would imagine. The DHEA is cheap and easy to find. You will not likely notice its influence, but it will likely be there over time.

* Vinpocetine. You will likely notice its influence. Here's a post I did on it recently:

http://www.spacedoc.net/board/viewtopic.php?p=4936#4936

* NADH. I do about 15 mg per day which is three of the tablets. By doing it sublingually, you bypass the liver that way. Everything absorbed from the intestines goes directly to the liver for processing. It is my theory (based on reading the "inventor's" literature) that the NADH does not need processing and more is likely to get into the blood stream in volume by this method. A relatively empty stomach may be best as there would be less competing nutreints wanting to be taken up by the cells. Also, a small amount of carbohydrates at the same time (like some grape juice) would probably be good as it would stimulate cells to get in "absorption mode" via insulin release. He recommends 5 to 15 mg per day. I think the upper amount makes sense for us. I do not think that we will necessarily notice its effects but is good to take anyway -- particularly since it is cheap. Anything that might assist CoQ10 and Carnitine to get things working right to produce energy is good in my book. I wish there were several more Coenzymes like it available.

* ACL.

"I only take 2 grams of ALC but I take L carnitine
1500 mg too. Do you think acetyl is better?"
--DEB

I think you should take at least 3 grams of ALC per day as was used for three years in at least one experiment/study I read regarding correction of peripheral neruopathy. (It aids all cells produce energy, particularly high demand neuron cells.) It was well tolerated and showed very good results over time; and as Ray mentions, any unused is just eliminated, it appears. You need the extra acetyl portion attached to the base molecule to escort it across the blood brain barrier, and also, it does the same with the inner membrane of the mitochondria. The two are interchangeable once inside the innards of the mitochondria -- the same base molecule goes back and forth between the two "conformations" per demand.

* Creatine.

"Do you take creatine AND the other supplement too?"
--DEB

I take about 5 or 6 grams per day in watered-down grape juice. I am not sure what "other supplement" you are referring to.

I miss exercising a lot too. Bummer. Also a bummer about the cold ! I have had them in the summer and don't like it at all. It crossed my mind recently that doing the nasal rinses that I do for sinus problems will likely lower my odds for getting a cold as I probably wash out some of the viruses on a regular basis. I wash my hands after being out and try not to touch my face too much.

Giving up bread is probably a good idea. Yes, I have pretty much quit buying milk. I don't trust it anymore due to added hormones in the cattle's feed, and stuff like that. I do not really miss it too much. I use butter a pretty good bit.

Interestingly, my weight has been ten pounds less since I quit Zocor and I have done nothing intentional to keep it down -- and even quit most exercising! I may now attempt to lose another five or ten -- we'll see.

On my agenda before too long is to look into "liver repair" protocols. I will check out the milkseed thistle.

Today has been pretty good. Poor overall energy levels, but excellent vision. Decent mood too. I may still be under the influence of the "sun treatment" from Thursday afternoon a little bit. It can last (i.e., the malaise) up to four or five days according to an article I read, and I have been out adding to it some today.

Biologist

[Val]

It appears that the addition of the fluoride molecule to the various fluorinated medicines, Statins, Fluoroquinolones, and other drug classes may be the common denominator that renders the medicine able to penetrate to the cellular level where so much damage is done, even to the extent of brain damage and DNA damage. Research is showing that the depths of damage were never anticipated or acknowledged until a vast amout of damage has already been done with little thought given as to how to undo that damage. If drug companies are allowed such free reign over their products we must challenge them to come up with antidotes for their "poison" before they are allowed to market it in case of ill effects that must be treated.

[carbuffmom]

Hi Biologist:

Wow! Thanks again for all of the great info. I am placing an order at iherb today.

My cholesterol is 296. That's about what it was way back when. My HDL has always been good, but that has dropped somewhat due to the lack of exercise, I am sure.

I had thought about using cinnamon until I read the posts here. It's odd that a little spice can do so much.

I started the nasal rinses, too. They really seem to help.

I lost 10 lbs. in three weeks right after I stopped the vytorin. I have since put it back on, again, I am sure due to the lack of exercise. I need to correct my diet and make it more healthy. I have been using soy milk in my cereal----don't know if it's better than milk or not. It tastes good.

I was mistaken, the liver cleansing supplement is milk thistle seed not milk seed thistle. The chiro said it is best taken at night. I take it at every meal. It's just easier that way.

I am contemplating having my mercury fillings removed. I have several so I imagine it will be quite expensive and time consuming. I will have to travel some distance to have it done as well. Dr. Newman said it's not been proven to be of any benefit for ALS, but many websites suggest that it is.

I was out in the sun working on my flowers yesterday and had to take a nap when I was done. Go figure, you would think the sun would be rejuvenating!

Hope your day today is better than ever. DEB

[Brian C.]

"I am contemplating having my mercury fillings removed. I have several so I imagine it will be quite expensive and time consuming. I will have to travel some distance to have it done as well. Dr. Newman said it's not been proven to be of any benefit for ALS, but many websites suggest that it is."

Although I am not an ALS sufferer I will be having all my amalgams replaced with something less toxic after the holiday. Although expensive (around 2000 GBP) I feel it will be a worthwhile investment. As we age our bodies have enough to cope with without added toxic loading.

The drilling out will release a lot of additional mercury so chelation is essential to counteract this.

Brian.

[NurseJudy]

Dear Biologist, I got lost trying to follow where there is data about statins and Parkinsons. It sounds like there is some sort of survey? Could you copy the correct links?

I met the nicest man who was told by the VA that he would help the Vets by doing a trial statin study. He can now hardly move, has memory issues, and has now been diagnosed with Parkinsons. (More drugs). Thank you! judy

[carbuffmom]

Hi Brooks and Biologist:

I got my new Ubiquinol. How much does one take? I usually take 1200 mg per day. Can I take less of the Ubiquinol?

I also got the Vinpocetine and DHEA. What doses do you recommend? I am willing to try anything to get out of this mess.

I have increased the acetyl l carnitine to 3000 mg. Perhaps this will be the magic bullet!

I see the local neurologist tomorrow. Oh joy! I am sure he will want me to try the Rilutek again.

I can't thank you all enough for your encouragement and advice. I hope you all enjoy the remainder of the weekend.

DEB

[Biologist]

Hi, NurseJudy.

I would not be the best one to ask about the survey (which is the title of this thread). eml256 may have some further info. I went to the site after she first posted the link in her first post but have not made time to check it out real well or do the survey yet, while I will get around to it eventually. Several months ago I did several hours of research online and have formed a tentative opinion of part of what may be going on with a relationship between PD and ALS with statins. In short, I think statins damage mimics the symptoms (and partially the physiology/pathology) of the two diseases by taking out certain strategic nerve cells (i.e., high energy users) via ruining their mitochondria due to toxicity (as opposed to genetics and/or the combination of genetics and environmental influences). Statins may trigger such neuromuscular diseases in some susceptible people, but much more likely just do the same thing in some people regardless of any particular genetic predisposition towards the diseases. I think statin people are less likely to see long-term progression after quitting statins, while the damage may continue for a while. I have no idea how much repair to expect or how soon.

Biologist

[Biologist]

"I got my new Ubiquinol. How much does one take?
I usually take 1200 mg per day. Can I take less of
the Ubiquinol?"
--Deb

I took all of my first bottle in about the first few days after it came in. Maybe 1000 mg. per day. I have three bottles left and will be taking about half that per day until gone and will order more before I am out. After a month or two I will probably lower it to 300 per day forever. The stuff is probably about twice as bioavailable so 1000 mg is likely similar to 2000 of the regular stuff. I would not recommend taking the old stuff at the same time (like I did for a while) because you might be creating unnecessary competition for the carriers (the LDL molecules, it appears -- same competition as with Vitamin E).

I also got the Vinpocetine and DHEA. What doses do
you recommend? I am willing to try anything to get out
of this mess.
--Deb

I take 25 mg of DHEA every other day. The Vinpocetine I take about three times per day with a meal at 10 mg per dose. Going off of it from time to time may be advisable, but I am uncommital about this idea currently. I just bring it up as a possibility of doing that over the months -- like they recommend with creatine (at least where weight lifting is concerned, no telling about statin recovery situations).

Brooks brought up a good point recently that I have given some more thought to. It is possible that natural carnitine production (if not CoQ10 production too and others) in our cells could drop off with our heavy supplementation. I think natural production will come back after a fairly short period of time (but maybe several weeks?) after quitting supplementation; but just quitting all the sudden -- particularly carnitine -- is likely to be felt. Unused cellular complexes (protein machines with their associated enzymes for the manufacturing of, say, carnitine) could very easily be "decommissioned" and taken apart (as all cellular machines/complexes routinely are, but then immediately replaced) if not needed, and it would take a while to get them rebuild and back online once called for by the cells in response to supplementation dropping off suddenly. I believe that is what may have happened to me a few weeks ago when I experimented with quitting carnitine supplementation all the sudden.

BTW, another theory about why "rechallenges" are such a problem maybe due to the possibility that the body uses the reprieve from the assault to do major repair including cellular and mitochondria divisions to replace the dead and dysfunctional. The rechallenge catches whole masses of cells (or their many mini-cells, the mitochondria within each cell) in the act of replication where the rechallenge would likely ruin both daughter cells caught mid process in dividing and thereby causing the loss of both -- and thus the major recurrence of statin symptoms and damage. Dividing is the time the cells (and their component parts) are the most vulnerable. This is how cancer therapy works -- radiation or chemo. It catches the cancer cells dividing (because that is what they are always doing) and selectively kills them.

"I have increased the acetyl l carnitine to 3000 mg.
Perhaps this will be the magic bullet!"
--Deb

The magic bullet unfortunately will likely be time. Good nutrition and no toxins over that period will help! I will make a post before long on the likely cause of exercise intolerance (and laying out in the sun which does some of the same thing) which I learned from a book I am reading. In short, it appears to be due to mitochondria damage to the cells of the liver (and perhaps the kidneys) which slows up detoxification of metabolic by products (in the case of the sun, it is the by products of the inflammation response from the "burn"). I had suspected this in recent months and think I have found evidence that this is the cause for feeling down and out following exercise -- even the next day or two. I will now be following up more on this idea and may look into some diagnostic testing (lactic acid buildup is a prime suspect). Exhaustion is my remaining major complaint -- but it's a big one. My stamina is no good. I am hopeful that it will correct with the natural repair of liver cells and will be looking for such answers.

"I see the local neurologist tomorrow. Oh joy! I am sure
he will want me to try the Rilutek again."
--Deb

Yep. Very likely.

Keep us posted.

Biologist

[poohhel]

Biologist: I will be looking forward to your findings on exercise intolerance. I am in a real need to try and get back to an exercise program, especially since I want to get my LDL-C down without Zetia or another statin drug, but one day of exercise results in two or more days laid up. . . I can not keep working that circle.

[carbuffmom]

Biologist:

Thanks for the info on the dosages. I started them all yesterday.

I think you may be on to something with the lactic acid buildup. The neurologist and the therapist all said that was most likely why I developed severe fasciculations after an EMG. I did run four miles before the test. (They were just supposed to do my hands, but it ended up being a total body experience.) I will be very interested to find out what you have discovered. Last week, I exercised two days in a row...BAD mistake! It took me two days to recover. The weakness in my arms was much worse. I guess even walking causes stress on the arms. I feel that I have to do some type of exercise to just conserve the muscles that I do still have.

BTW, the neuro visit yesterday was okay. I explained about the Rilutek and described what had occurred and he did not try to get me to take even a reduced amount. He tested my legs and deemed them strong. My arms are a bit weaker than six months ago---that scares me. I had hoped they would start getting better by now.

Well, good luck on your research. I hope you find the answer that will benefit us all. Have a good day.

Deb

[Biologist]

"I think you may be on to something with
the lactic acid buildup. The neurologist
and the therapist all said that was most
likely why I developed severe
fasciculations after an EMG. I did run
four miles before the test."
--Deb

That was on the first test, right? How long ago was that? The lactic acid idea I later found mentioned in the book. I will include that quote later.

"The weakness in my arms was much worse.
I guess even walking causes stress on the
arms."
--Deb

Yes, I think I have noticed that too.

"BTW, the neuro visit yesterday was okay.
I explained about the Rilutek and described
what had occurred and he did not try to get
me to take even a reduced amount."
--Deb

Excellent. That's good.

I just got back from the doctor for the first time in months (went about fatigue). Just for fun and kicks I added a cholesterol test (even though I had just eaten a full meal) to my small battery of other tests for liver function and stuff (and he added a testosterone test since I mentioned the DHEA -- why not?). He is off the cholesteral message with me. That's good too. He mentioned that he is now recommending CoQ10 to any statin users he is "concerned about." I thought about telling him to just remove them all from statins and add the CoQ10 at the same time, but just settled on telling him ALL his patients should be on CoQ10 -- the new reduced form probably being best. I mentioned Dr. L. to him.

"My arms are a bit weaker than six months
ago---that scares me. I had hoped they
would start getting better by now."
--Deb

Is that a subjective judgment or does he have some kind of test weights for you to lift? It would not be surprising that you would lose some muscle tone from less heavy usage. I know that my arms are not near as strong as they were a year ago and I am surprised at this time to still have weak shoulders. This seems to come and go but has been poor for the last few weeks.

"Well, good luck on your research. I hope you
find the answer that will benefit us all."
--Deb

I will finish the book first and then post some quotes that support my reasoning, but the basic idea is as stated so far. My tests may or may not be enlightening. I did not have a chance to do any research on testing prior to my visit today, but what was done is probably a good first step. I was in pretty good shape today, next time I may do the "four mile run" thing the day before to see if tests come out differently. I will let you and poohhel know of anything I come up with. He did mention, that among a whole slew of other things, liver problems can cause fatigue.

Here are the tests I did (three containers of blood samples):

* THS
* Free T4
* CMP
* CBC / D
* Lipid

I do not even know what some of them are yet. One is for thyroid function, I think. I will do some research before too long to have my own idea of what, if anything, the results may mean.

BTW, my doctor says that the liver is particularly good at regenerating itself. I suspect that is generally correct. Why so slow, I do not know -- yet.

Biologist

[Biologist]

Deb,

This hyperlink (with its text included below) tends to show we are doing the right supplements including the creatine for neuromuscular issues. Note that "nicotinamide" is NADH. They did overlook Lipoic Acid though (which reportedly works in concert with ALC).

*http://www3.interscience.wiley.com/cgi-bin/abstract/104085776/ABSTRACT?CRETRY=1&SRETRY=0

There is considerable evidence suggesting that mitochondrial dysfunction and oxidative damage may play a role in the pathogenesis of Parkinson's disease (PD). This possibility has been strengthened by recent studies in animal models, which have shown that a selective inhibitor of complex I of the electron transport gene can produce an animal model that closely mimics both the biochemical and histopathological findings of PD. Several agents are available that can modulate cellular energy metabolism and that may exert antioxidative effects. There is substantial evidence that mitochondria are a major source of free radicals within the cell. These appear to be produced at both the iron-sulfur clusters of complex I as well as the ubiquinone site. Agents that have shown to be beneficial in animal models of PD include creatine, coenzyme Q10, Ginkgo biloba, nicotinamide, and acetyl-L-carnitine. Creatine has been shown to be effective in several animal models of neurodegenerative diseases and currently is being evaluated in early stage trials in PD. Similarly, coenzyme Q10 is also effective in animal models and has shown promising effects both in clinical trials of PD as well as in clinical trials in Huntington's disease and Friedreich's ataxia. Many other agents show good human tolerability. These agents therefore are promising candidates for further study as neuroprotective agents in PD. Ann Neurol 2003;53 (suppl 3):S39-S48

[eml256]

*http://tinyurl.com/27fjz9
web site for discussion of alpha lipoic acid--theoretically ala helps re-cycle coenzyme q10....also stimulates glutathione , which is thought to be important in parkinson's
Drs. Bruce Cohen and Deborah Gold authored article "mitochondrial cytopathy in adults: what we know thus far" which can easily be accessed via google. the article lists supplements and vitamins thought to be important for mitochondrial dysfunction. a "mitochondrial cocktail" is frequently ordered for indivduals with motochondrial cytopathies.
as the preceeding post noted, mitochondrial dysfunction is thought to be part of the pathophysiology in parkinson's. and definitely thought to be part and parcel of statin toxicity owing to depletion of coq10.

the questionnaire listed at the start of this thread has been completed--results are not published yet. but thanks to anyone who participated.

[carbuffmom]

Hi Biologist:

My first emg was in November of 2005. That's when I feel things really went downhill. I thought I had carpal tunnel. I thought they would just test my hands. ( That was the initial plan anyway.) I ran in the morning as I normally would. I developed such facsiculations from that test that I swear people could hear them. Of course, I was still taking vytorin at that time. I made sure to be inactive for the second test. I did no exercise for three days prior and it did not give me the twitches.

I measure my arm strength by the things I am no longer able to do, such as getting dishes on the higher shelves, hanging clothing on the higher racks, etc. It's harder to fix my hair. Sone days are worse than others. I no longer write in my usual precise way. This, however, has not changed in a year. My shoulders are way too bony. My very upper arms (above my biceps) are very skinny. I no longer wear sleeveless tops in public.

Strength at the clinic is measured by hand and finger grip tests and just by pulling against various body parts and testing range of motion. I used to be able to do 30 reps and now am down to 10. Of course, I don't do them as often as I did when I was in therapy.

I will be very interested to see what your tests show. I know that thyroid problems can cause weakness...

I, for one, am very grateful for your continued research and encouragement. Perhaps we can get more doctors to back off on the cholesterol issue. My GP knew nothing about CoQ10! We sure did enlighten him.

I am taking 600 mg of the Ubiquinol each day instead of 1200 of the other. I have not noticed that the lesser dose is affecting me adversely. I will need to order more though. I am glad you said not to mix them together, cuz that's what I was going to do...

I hope you have a great weekend, strong and energetic.

My best, Deb

[carbuffmom]

Hi Guys:

Been doing more research. I have come upon a product called D ribose.
It's supposed to be good for your heart, energy level, and neuromuscular problems.

I received an article with my iherb.com order called "The Awesome Foursome: CoQ10, L-carnitine, D-ribose, and Magnesium. It tells how Ribose fills the tank, CoQ10 and carnitine help the engine run properly and magnesium is the glue that holds the energy metabolism together.

While googling for more info, I came across the following product that combines D-ribose with creatine and magnesium. I am thinking about trying it. The website is www.nutrabio.com/products/atp.htm

Has anyone ever used D-Ribose? I would appreciate any info.

Thanks, Deb

P S The article was from The Sinatra Solution, Metabolic Cardiology by Stephen T. Sinatra, MD

[carbuffmom]

The link doesn't work. You have to go to www.nutrabio.com and click on Ribose.

Sorry......