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

[eml256]

A GROUP KNOWN AS "PATIENTS LIKE ME" IS CONDUCTING A SURVEY TO DETERMINE IS THERE EXISTS AN ASSOCIATION STATISTICALLY BTN STATIN USE AND PARKINSON'S OR ALS.

*http://www.patientslikeme.com/forum/show/1596

If you are interested in helping alerting all others to the potential dire, neurological side effects of statins, please consider joining this group if for no other reason than to take their survey. the group was started by 3 MIT engineers--2 of them brothers of stephen Heywood who succumbed to ALS at a very early age. they are determined to help find the cause and cure...

The cholesterol-lowering drugs known as "statins" are among the most widely prescribed drugs in the world. They are an established front line treatment in the prevention of stroke and heart disease and have been used safely by millions of people. We are asking all of our members to complete a brief survey about their use of statins (all patients and caregivers will receive a separate invitation to the survey). This information will allow the PatientsLikeMe communities to provide an important missing link, the patient's voice, in a growing discussion about how statins may relate to neurodegenerative diseases.

Statins have been suggested as a possible treatment for MS (http://www.medicalnews...(cropped))

and in Parkinson's Disease, researchers have found that that the disease's incidence is lower in people taking statins

(http://www.medicalnews...(cropped)); paradoxically however, they also find lower LDL-cholesterol can be a risk factor for PD.

We are responding in part to interest from our users in a number of recent research findings, including some forum postings pointing to concerns that the use of statins may trigger ALS. Last week the Wall Street Journal interviewed a scientist at the World Health Organization (Dr. Ralph Edwards, WHO Collaborating Centre for International Drug Monitoring) who recently published a report in the journal Drug Safety indicating a small number of reports of ALS or "ALS-like syndrome" associated with statin use. (http://www.medicalnews...(cropped))

The information analyzed in the study comes from an international effort to compile information on adverse events - ranging from allergies to disability to death. The information system is not designed to monitor all drug effects, and so, it only contains limited information about people who may have been harmed by drugs. This is important data, but the WHO methods and research findings are controversial and will receive a lot scrutiny.

There is a great opportunity for the PatientsLikeMe community to contribute information that no one else has or can easily generate. That contribution will have the maximum benefit if you would be willing to respond to a brief survey about whether you are using or have ever used statins, and answering a few other questions that are not collected as part of our standard treatment reports. You will be providing important information that may help shape future research on the relationship between statin use and your disease. If you have never used statins, it is still very important that you complete the few questions in the survey that are applicable to you.

We will summarize and report the results to the PatientsLikeMe community and the public, in the interest of increasing the amount and quality of information that is available to evaluate the benefits and risks of these drugs. Based on the initial results, we may also conduct more detailed surveys on this topic.

As always, if you have any questions please be sure to message one of the research team, or email *research@patientslikeme.com

[Biologist]

eml256,

Thanks for posting this. I am real busy and also very worn out right now(statin-caused), but I am sure I will check it out, join and participate.

Biologist

[carbuffmom]

Done and done. Amen-------------Deb

[Val]

I will also participate in this study because the information gained may finally shed light on all fluorinated pharmaceuticals that are wreaking havoc in peoples lives. I think these studies are apt to show the one common denominator to be FLUORIDE. Because most of us have already surpassed our body tolerance of fluoride through ingested food, drinks, drinking water, dental products, air pollution, and absorbing through our skin, any additional fluoride prescribed in medications may be the final assault that breaks down our bodies with disasterous results.
The increase in fluoride sources has slowly and gradually increased over the past 50 years beginning with the addition of fluoride to our municiple water systems and spreading to the discharge of poisonous fluoride toxins from many commercial enterprises into both our air and water.
Because the onset of symptoms is often delayed past the use of a fluorinated medication the source of this insiduous cycle of poisoning is
often unrecognized.
A very interesting and authoritative article on this subject can be read at this address:
*http://www.rense.com/60/nationalfluoridedatabase.htm

[Biologist]

Val, the site does not seem to come up for me...

Biologist

[Val]

Sorry, Bio that the site did not come up for you. I had found it by doing a google on "fluoride pharmaceuticals" perhaps you may be able to access it thru that source. Good luck It's really worth the search and the read.

[Biologist]

Val,

I am sure I will find it and read it, and am looking forward to it. However, I went looking for it a couple of hours ago on the parent site *www.rense.com and got hung up there for a couple of hours. That site is like an adult version of Ripley's Believe It or Not! Some very interesting stuff there. This one is particularly appropriate for this forum (with an excerpt included below):

*http://www.rense.com/general77/heart.htm

"Reader, isn't it fairer to have cursed and
reviled them [doctors] because they slowly,
purposely, and profitably killed you for the
MONEY...??

In all fairness, I'm sure there are many young
MD's who probably have not yet realized that
they are part of a corrupt system... but after
10 or 15 years, Like Dr. Atkins, MD, (the low-
carb guru) often said -- (I'm paraphrasing)
"Doesn't it dawn on them that they're just
treating symptoms with poisons which block &
inhibit natural enzymatic processes, often with
devastating effects"?"

Biologist

[Biologist]

Deb,

Thanks for pointing out NADH and the website to get it -- where it was five times less expensive than at the health food store! Starting tonight I have been experimenting with a new "delivery system." Hint, it can be crushed and "snorted" per the following URL by the inventer, if you have not seen this yet. Just word search "nasal" or "nose" to go to the right spot in the document if you're not interested in a bunch of reading.

*http://www.patentstorm.us/patents/5712259-description.html

I hope you are doing OK.

Biologist

[cjbrooksjc]

Biologist: We have nothing in the house but lard, cold-pressed olive oil, and organic coconut oil (a solid oil at room temp) having gotten a heads up some time ago about refined, store-bought oils. Still. I couldn't quit reading this, and I'll be back tomorrow to poke around some more.

ALSO, I DID want to tell everyone, but neglected to, that Dr Langsjoen and his wife, Alena, (also a PhD) are two of the most likable and real people I've ever met. They are excited about what they do, are eager to talk about it and about THINCS (they are plank owners in the organization) and are supremely competent physicians. I owe Ray Holder (Bournemouth, England) a debt of thanks for bringing Dr. Langsjoen's Statin involvement and location to my attention (about 100 miles east of Ft. Worth) What a blessing it is to have a Doctor who not only listens but is interested in what you are saying... Thanks Ray!

Regards,

Brooks

[carbuffmom]

Hi Biologist:

I will research the nasall method. I find that the NADH does help. I am doing okay. The doctor from Henry Ford says the EMG shows that I have ALS. I don't know what to think. Did the statins cause me to develop ALS or am I being misdiagnosed? Most people who have statin damage have normal EMGs from what I have read. I go back in September and will request the spinal tap and muscle biopsy and see how that developes. I do appreciate your concern.

I do have Jon Campbell's handbook. I followed it for about nine months. I may try it again.

I haven't noticed any difference or improvement since starting the Mannatech glyconutrients. I don't think I will order any more.

How are you doing? I, like you, have good days along with some bad ones. I have experimented with not taking the supplements for a few days. I have discovered that I really need the CoQ10, carnitine, and NADH. I have discovered that the creatine really does work to keep me going also.

Hopefully, with everyone working together, we can figure out a regimen that really works.

Have a good weekend.

Deb

P S---Brooks---thanks for asking the ? I do appreciate it.

[Biologist]

Hi, Deb,

Sorry to hear the diagnosis per the EMG. I sure think you are asking the right questions. Have they indicated that they are able to do that spinal tap test for those specific protein levels at that facility? It might not be practical, but ideally it might be preferable to have the hospital that "invented it" do it -- blind. Not knowing your history or previous testing, etc. There's no telling how much is subjective about interpreting the readings for either test. A different doctor might interpret differently.

However, the treatments might be identical regardless of the "official diagnosis." You might want to ask about that. If it is not ALS, what are the alternative possibilities and are the treatments and prognosis the same. Are your symptoms getting worse?

A little off the subject, but regarding your getting the condition, ALS or not, I think there can be no doubt that it is due to a long time use of the statins your were prescribed. I know you feel the same. I wonder if your new doctor's do. Here's a good post to re-read from Darrell:

http://www.spacedoc.net/board/viewtopic.php?p=2427#2427

It would be good to know more of the specifics of patients who have improved after such a diagnosis, but that information might be hard to come by I would guess -- maybe they were misdiagnosed.

The last couple of weeks have been disappointing for me overall. I was easily feeling better two months ago. But as you mention, that seems to be the way it goes.

Biologist

[carbuffmom]

Hi Biologist:

I will research some more on the spinal tap. As you said, it may be best to go to the source.

I will again start my list of questions for my next visit. He wants me to take Rilutek---which is supposed to slow down the progression of the disease. I can't really say that I am worse, just not any better. My arms are probably weaker than they were six months ago. The fuzzy vision seems more frequent. I just don't know. I k now I am depressed which can make things even worse.

I sympathize with you-----I thought we would all be feeling somewhat better after getting rid of the statins. Hang in there---there have got to be better days ahead.

Deb

[Biologist]

Deb, do you have any problems swallowing or speaking?

Has your specialist seen / treated many former statin users?

Biologist

[carbuffmom]

Hi Biologist:

Yes, sometimes I feel like I have a thick tongue and that my words are slurred. I only have trouble swallowing if I try to take too many supplements at one time.

I don't know how many patients he has treated that have used statins. I guess that will be another question to add to my list.

I don't know what to think, but I am getting very afraid.

Thank you again for your support.

I hope today is a good day for you.

DEB

[Biologist]

Deb,

When does he want you to start the Rilutek?

I don't know a lot about it (Rilutek) except that it is not supposed to be real effective and the side effect of raised liver enzymes just sounds mighty dubious / suspicious to me for someone with known severe statin intolerance and statin damage where raised liver enzymes are key.

It could turn out to be a self-fulfilling treatment for the diagnosis -- it might make the patient's overall health worse, and thereby ALS symptoms worse. I get the idea that it is taken permanently too, which all the more makes it a concern. That is why I ask about experience with statin users.

It is looking to me like a definitive diagnosis of ALS is even important rather than less important. It could be that the damage to your system is largely over rather than your being in the state of ongoing ALS deterioration. He or someone has already indicated that you do not seem to fit the typical profile, right? You might stabilize and/or improve with the supplement treatment you are doing. As I recall, he did not seem to be a major advocate for insisting on even CoQ10 and acetyl-L-carnitine & alpha lipoic acid, right? Did he bring these up and remind you to take them the last visit?

Your doctor has nothing to lose by going the route he is going. He cannot get in trouble for it -- regardless of the outcome -- just like no doctor can get in trouble for prescribing statins regardless of how asinine it is including when the patient is clearly having severe reactions to it. And it is unlikely that he is one of the few who would jeopardize his career by implicating statins -- now that could get a doctor in trouble.

If it were me, I believe I would want more certainty in an ALS diagnosis before taking such a treatment.

It is a tough dilemma. I feel for you.

Biologist

[Biologist]

Sentence correction: "...diagnosis of ALS is even *MORE* important rather than less important."

Biologist

[carbuffmom]

Hi Biologist:

I didn't want to say it...I tried the Rilutek for 3 weeks. I promised my hubby I would try it for a month. My brother in law's co-worker had great results from it. I, however, did not. I was nauseous, tired, and dizzy. I thought the symptoms would go away with use. I took a tumble Friday from the dizziness and we decided that was it! After just two days, I feel so much better. My energy is better. The dizziness is mostly gone and I don't feel quite so depressed. I do not plan on taking it again. There is something to be said for quality of life. I will just continue on with the supplements and hope for little or no progression.

I do appreciate your support and wealth of information.

I hope today is a good one for you.

Deb

P S I am going to look into the Ubiquinol. How much do you take? The doctor did encourage the use of the supplements.

[Biologist]

Deb,

That may have been a good experiment to do. I probably would have. I agree that you should now stay off of it. You say: "My brother in law's co-worker had great results from it." Why is/was he taking it? ALS? Not a statin user, right?

You know, just the numbers speak against the probability of you having ALS since only a few thousand are diagnosed with it each year in the States, and out of 300 million people, that is seriously low odds.

Something that I might look into over the months is whether or not such natural substances as Human Growth Hormone or other similar natural molecules along that order might be advisable. It is possible that you would be a good candidate for such potentially regenerative substances. I really know little about it; it just crossed my mind while taking a walk just now. There would be no publicity as there is likely no money in it for BigPharma as these things may not be patentable and might compete with some of their junk. There was a doctor featured on 60 Minutes months ago who did such treatments and he may have been under some scrutiny by the FDA (which is where the scrutiny should be directed).

This has been a very good day for me. Vitamin C is off the hook because there is at least as much evidence that it helped me this time as it may have hurt me last time. I took a gram right before bed and did better from the time I got up. Probably just a coincidence, but maybe not. My shoulders generally have an odd sensation on waking which lasts a couple of hours after getting up. Doesn't hurt but I notice something is going on and they and my arms are typically weakest when I have that feeling in them. I think there may have been some repair mechanism enabled with the VC that worked over night because that was gone for the first time in some time. Who knows? But I will be back supplementing about half a gram every three or four hours or so for a while.

I will not be surprised if I do not have a very good day tomorrow as I have probably over done it today. I think that may actually be the trend for me: When I feel good, I take advantage of it too much. So I will consider today to be an experiment too. Ultimately I would like to have several days in a row where I feel good as I think more overall repair can go on during those times. That may mean being pretty useless for things that need to get done like "house keeping chores" but that will be OK. Let the car need a washing...

I think Brooks said that he takes 200 mg at a time of the newer CoQ10 and probably does three doses per day (but I will recheck that when mine gets in).

Good to hear you are feeling better. I have a hunch you will continue to do so over the months. Good nutrition is becoming much more important to me these days. Hardly any processed foods or anything else "unnatural." Lots of fresh fruits and vegetables from the Farmers' Market and Ribeye steaks, etc. No soft drinks, nor beer (while that may not last long if I keep feeling good), no nothing... But coffee yes, I even bought dehydrated milk as a creamer just to get away from partially hydrogenated creamers; but nothing but bottled water -- where I researched the chloride and fluoride amounts on the brand I get, Deerpark, from Sam's Club. It checks out OK per their website, unless they are lying. (I could hyperlink to it, but the chart is a little confusing unless you do some reading on how to interpret the info -- I thought about linking to it with an explanation of how to read it, but there is probably not "much demand" for that type info here -- the point is that Walmart's brand will work fine assuming it is the same brand found at Sam's.)

My mood has been much better today too. Over the long run, that may partially be from taking L-Tryptophan for several months as recommended by Brian (*http://www.biochemicals.com/productfiles/ltryptophan.htm ). I will continue to take the NADH (crushing it with my teeth a placing it under my tongue for sublingual absorption a couple of times per day) and I agree that the Creatine is good (taken in a glass of grape juice). I also have been using something similar to what you had suggested (as was suggested to you) from another post (in my case, a combination pill of L-Arginine & L-Ornithine and L-Glutamine).

Biologist

[Biologist]

Deb,

My Jarrow "QH-absorb" Ubiquinol CoQ10 got in several days ago. While Dr. L has recommended 200 mg. three times per day at meal time for Brooks, I have decided to double that up until the first bottle is gone with six dosages with six smaller meals per day. I have also increased my Acetyl-L-Carnitine to about four grams or so (between meals) per day taken at about a gram per dosage with 200 mg. of R-Alpha Lipoic Acid every other time. My vision has been very sharp the last few days and energy levels better. I have taken fewer naps in the day (of which I never actually get to sleep -- but get to use as an opportunity to let an NADH tablet dissolve and absorb completely under my tongue). Getting some sun for one of my "naps" did not work well again recently. That was my second experiment with that. I was mentally and physically affected starting a few hours later and continuing almost two days with just enough sun to get my face a little read. A good site I read from indicated that my symptoms were classic for someone with a decent burn (short of blisters). I probably got half as much sun as is generally required for such a reaction, so I am more and more thinking impaired liver function in dealing with metabolic byproducts may be involved (which I suspect might improve over time).

Have you ever tried DHEA or Vinpocetine or read up on either or both?

How long have you been off statins?

What was your ending dosage amount?

Why were you put on them?

I hope you are doing OK. I still think the odds are less than 50/50 that you have ALS, but rather have the same symptoms -- but for a different reason. I think you have damaged mitochondria (that have killed some cells, like in my case) but not mutated mitochondrial genes for the replication of new mitochondria. I believe ALS patients are unable to produce new working mitochondria (or mitochondrial "parts") for vital cellular energy due to "genetic preprograming." I believe severe statin sufferers can produce working mitochondria. I think their genes are generally OK and that enough of them can produce good proteins for cells to survive with enough time for replication in a good (supplemental) "environment."

I can see the possibility that you may still be experiencing ongoing statin effects and may not have even started the upward curve of the recovery process in full form yet due to the length of time you were on them. My ALS-type symptoms have stabilized. My left arm is little better after four months since it started (three months after stopping 40 mg. of Zocor after 6 years of use, most of which was at 27 mg. per day though) but it does seem to have stopped progressing. My right arm is close to being normal and has clearly stopped progressing. It might all change tomorrow, but that is the status today. I am raising the odds of complete recovery of "arm function" (i.e., loss of the tremor and feelings of "instability") to 20% in the next few years from a previous 5%.

Biologist

[Brian C.]

There is a study (can't remember the details but got it somewhere) which showed that a statin significantly affected gene expression, increasing error.
If I get the chance I'll try to find it today.

Brian.