How long will it take to get well?

[BDavis]

My question is how long will it take to be back to normal, with no other change in my meds than stopping Lipitor? I spent the last year seeing all kinds of specialist and no one could tell me my symptoms were from Lipitor or what was wrong, until I found a specialist at a teaching hospital here in Portland. I found her after searching for information on Pulmonary Hypertension, which matched some of the symptoms I was having. She did a CPET test and concluded it was a severe Statin side effect. She then turned me back to my general doctor for treatment. My GP said no to my suggestion to take CO Q 10. It’s been 6 weeks since I stopped Lipitor and some of my symptoms have stopped and I don’t have the fog in my head like I felt. The exception is when I’m tired, after working a complete week; I find most of my symptoms come back except the fog. I spend most the week-end resting. I would summarize my symptoms of those found with heart failure, ALS, Parkinson and Alzheimer's disease.
Thank you for any suggestions or help,
BeLinda

[sos_group_owner]

Hi BeLinda & Welcome to the Forum,

Now that you've stopped Lipitor, it's a good time to start 'Statin Alternatives':
http://www.spacedoc.net/statin_alternatives.htm

Buffered Aspirin - 81 mg (contains beneficial magnesium)
CoQ10 - 100 to 150 mg (gelcaps - NOT powdered) with some Vit E
* Folic Acid - 400-800 mcg
* B6 - 80-100mg
* B12 - 200-250mcg
* (all 3 of these B Vitamins control Homocysteine)
Omega 3 (Fish Oil or Cod Liver Oil) - There is no upper limit

Most doctors know zip about nutritional supplements, so not surprising you didn't get an OK from your GP. Only caution with CoQ10 - it can lower BP, especially in those with hypertension, so if you are taking BP meds, monitor when starting CoQ10 and when increasing dosage.

My husband used to take 2 BP meds and now takes only 300 mg of CoQ10 daily - BP usually about 118 over 78.

Fran

[BDavis]

Thanks Fran,
I'm anixous to get started with the supplements you mentioned as so many on this and other boards have commented on the relief but I promised my doctor I would take anything new for 3 months after stopping the Lipitor.
I get so depressed with the slow recovery and I'm thinking the COQ10 could only help. I just don't know if I want to follow my doctors request considering she knows nothing about the side effects or the recovery. In fact if we weren't already planning to move back to FL, I stop her now.
BeLinda

[cjbrooksjc]

Belinda: Being relatively new to this forum I hesitate to advise you, but I have had excellent results with CoQ10 and L-Carnitine, etc. as outlined in Fran's response.
I can only say you should read some of the posts on this forum and make your own decision.
My Dr., as most Drs., was dismissive of Statin effects and suggested I get a complete MRI body scan to discover what was wrong with me; that's when I went to another Dr. (out-of-network), paid cash, and got the most valuable advice of my life: "Stop taking the Zocor." It was two more months before I found this forum and began taking the CoQ10, etc. I began to feel better immediately. So, it's your decision. All I can do is relate my experiences. Others here will advise you in like manner; I'm sure. I wish you well.

Regards,
Brooks

[carbuffmom]

I, too, have muscle problems similar to those of ALS from 13 years on Zocor and Vytorin. My neurologist recommended CoQ10---1200 mg per day. You could start out at a lower dose, but I certainly think you should give it a try. There are no side effects that I know of except that it can lower your BP. If you take meds for BP you might want to keep track of it. Good Luck and may better days be ahead.

[tex62]

BeLinda,

I agree with Brooks. You need to do your own research and make your own decision. I find it unusual that your doctor would tell you not to take anything for three months after stopping Lipitor. Like you, I was uncomfortable putting traditional medical advice aside and I sought my doctor’s approval regarding treatment. Fortunately, she listened and was supportive; otherwise, I would have looked for another doctor. I would encourage you to go back to your doctor and find out why she doesn’t recommend taking anything, including CoQ10 for three months. If your doctor is unable or unwilling to give you a good answer, I would look for another doctor. Maybe the specialist who diagnosed your problem as being statin induced could help you.

This article highlights a study of patients who had been on statins and suffered side effects. They stopped statin therapy and took CoQ10 supplements. The conclusion was “We conclude that statin-related side effects, including statin cardiomyopathy, are far more common than previously published and are reversible with the combination of statin discontinuation and supplemental CoQ(10)”.
[http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?db=pubmed&cmd=Retrieve&dopt=AbstractPlus&list_uids=16873939&query_hl=4&itool=pubmed_docsum]

Best wishes.

[BDavis]

Thank you Brooks, Tex62, Carbuffmom,
From what I have read I have a gut feeling about just going ahead and starting the supplements. My gut found the results of my illness so why am I questioning?
I do have one question though, when I read about how much the CoQ10 and L-Creatine help but that the symptoms come back with a missed dose, is it a cure or just a relief treatment? I want to be well again, will that happen?
I'm tortured with people telling me to "just get out there and work out, you'll build muscle", but the truth is if I let myself do too much I get worse. Is there a physical therapy that helps?
You all know after being sick for so long and for answers coming so late, that patience to be well again is slim to none.
Again thank you all for your advice.
God bless us all!
BeLinda

[adec]

""I would summarize my symptoms of those found with heart failure, ALS, Parkinson and Alzheimer's disease.""

Take away the heart failure, add memory loss, and a milder case of transient global amnesia, and that's exactly what my mom experienced. How long does it take to recuperate, and are you destined for a lifetime of these supplements?

Second question first: I'm afraid to discover this answer for myself. My mom has been taking Coenzyme Q10 and Acetyl L-Carnitine religiously for over a year. By the way, I would recommend waking up early tomorrow, and finding these supplements ASAP! For CoQ10, I recommend the most bioavailable gel form with vitamin E added. Some people report recovering enough from statins to discontinue supplementation after a certain period of time, and others report becoming dependant. I guess it depends on the severity of your condition, and your genetic makeup.

Again, recovery time could also vary depending on the patient. In my mom's case, in the beginning she was lost, and in a world of her own. If a 10 rating was her worst day, by the end of the first week of supplementation she was at an 8. After three months, she was at a six, and then reached a plateau and leveled off for several months... this was a very dark period. Only around month eight did she truly start making remarkable and rapid progress, at this point she was at a three. I would have been more than happy with this recovery alone.

Yet, now more than a year later, I can honestly say my mom has experienced a full recovery. She has most certainly regained her memory and mobility, her hands and head have completely stopped shaking and her eyesight and hearing have improved, greatly. The many floaters that developed while on Lipitor have all but disappeared, except for one. She also stopped talking about her own morality, and started taking charge of her life. I believe everyone here has the potential for just such a recovery with enough motivation, dedication, and most importantly, positive thoughts. Good luck, and please keep us updated.

[cjbrooksjc]

My current understanding is that it takes 9 mos to a year to recover 80% , but please don't hold me to this... these are only statistics I have read while browsing God knows how many sources, and I'm only parroting the information. I've been on the recommended (Re: Fran's outline) regimen for about 4 months and am much improved but still not well by any means. One thing I have been assured: exercize is NOT the answer. Your body is damaged and needs to repair itself; undue exertion only exacerbates the condition. The one example I remember reading is that heavy exercize in this (your) condition is like running a marathon on a sprained ankle; you will only do damage. Take it slow, and wait until you feel able. Don't let people pooh-pooh your objections or push you before you're ready.

Regards,

Brooks

[adec]

Cjbrooksjc, it's anyone's guess as to recovery times. As there's no real cold hard scientific data. Just as many people go years on statins without experiencing a single symptom. We're basically on the cutting edge of an unexplained situation that should have never precipitated itself. Coenzyme Q10 is a starting mechanism for way too many vital functions to ever properly pin down, much less positively diagnose.

My only recommendation is to take your supplementation every day, and remain hopeful. Because, where there is hope, there is life.

[cjbrooksjc]

Belinda: The CoQ10 can be expensive, but Walmart, of all places, carries relatively cheap CoQ10 offerings. I didn't see L-Carnitine there; you may need to visit a health food store or pharmacy for that. Personally, I get all my suppliments from gonsi.com... I'm not promoting the NSI site or their products - I simply find it cheap and convenient to shop this way, and I don't care for the WalMart atmosphere. Hope you feel better soon.

Brooks

[adec]

Cj, You can purchase Acetyl L-Carnitine in an assayed bulk powder and cap your own supplements. You'll find this method far more inexpensive than capsule form... sometimes as much as 5-10x less expensive. Or you could even just place as much as 1/2-1tsp. daily in a drink. The taste alone is a little like rotting limes. I'm hoping to post more helpful information in the coming days, among other things. I just need to get a little more organized.

[Ray Holder]

Hi Belinda
There is unlikely ever to be a cure for statin damage because it is due to damage to and killing off of necessary functions by the depletion of CoQ10 which even damages the mechanism by which itself is made, and permanent supplementation is the only recourse available. I had heart failure symptoms from statins, and now at 85 and 5 years after I stopped my statin, I need 200mg Q10 three times a day, a missed dose results in angina later in the day.

The vital need for Q10 in every part of the body is unknown to most doctors, but the heart is especially at risk because of its high and continuous need for energy, only available if adequate Q10. is at hand.
You are only running yourself into the ground by not taking Q10. I got worse over the 14 months after I ceased my statin before I discovered Q10, whose benefit I found in about 4 days.

Q10 is the most urgent of the supplements to begin with, and carnitine next, because your heart gets 60% of its energy from fat, needing carnitine to metabllise it, and carnitine has probably been depleted by lack of Q10. These are necessary to keep your body functioning properly, then the preventive supplements can follow, to avoid future possible problems.

Its your life, for you to look after, if your doctor doesn't know the answer, as mine did not, then she can't blame you for finding a safe an lifesaving solution yourself.

Ray

[cjbrooksjc]

adec: Thanks for the heads up. I'll look into self-loading when I finish my current stash.

Brooks

[Biologist]

Ray,

Note the following excerpts from this URL from the website of the International CoQ10 Association. Other studies were cited where CoQ10 was started days and weeks prior to surgical operations and there was measurable improvement in outcomes, but treatments of the supplement just hours before had little effect as found here:

"In 1996 Taggart et al. randomized 20 patients
undergoing coronary revascularization surgery
to receive either placebo or 600 mg of oral CoQ10
12 hours prior to operation with no significant
effects observed, confirming the lack of acute
pharmacologic or clinical changes with CoQ10 [76].
Typically, oral CoQ10 supplementation rarely
causes measurable effect before one week and
is not maximal for several months."

[http://www.icqa.org/CVoverview/CVoverview.html]

Just a hunch on my part: Your experience with angina after a missed dosage of CoQ10 may partially be a function of the more immediate effects of lowered plasma viscosity from CoQ10 (if I have read the research correctly) rather than an actual lack of sufficient CoQ10 molecules in your heart muscle cells?

On the other hand, one interpretation of the following text from the summation at the end might be supportive of your observations. Mainly I make this post for cjbrooksjc and Belinda because it highlights the lag time inherent at least in initial CoQ10 treatment results, perhaps as opposed to maintenance results, as in your case. This may also be supportive of the contention that it takes some months before supplementation has reached its full effect (i.e., mitochondrial "repair"):

"The benefits of CoQ10 supplementation are likely not
due solely to a correction of deficiency in so far as
clinical improvements are frequently seen in patients
with "normal" pre-treatment CoQ10 blood levels and
optimum clinical benefit requires above normal CoQ10
blood levels (2 to 4 times higher). High blood levels
may be required to attain an elevation of tissue CoQ10
levels or to rescue defective mitochondrial function
perhaps by driving cytosolic glycolysis or the plasma
membrane oxidoreductase or by directly enhancing
the function of defective mitochondria. There is
almost always a delay in the onset of clinical change
of one to four weeks and a further delay in maximal
clinical benefit of several months. Possible reasons
for this delay include time to attain adequate tissue
levels of CoQ10 or time to synthesize CoQ10-dependent
apoenzymes."

Biologist

[sos_group_owner]

Thank you for the link to this excellent informative article, Biologist.
Dr Langsjoen writes in an 'easy to understand style' similar to Dr Malcolm Kendrick.

Fran

[Biologist]

Yep, I like them both too.

I read your two mitochondria links recently. That was helpful.

Biologist

[bunnylady]

I have been off statins since May of 2006- I was on 20 mg Lipitor for about 14 months- went off that, felt almost well when my doctor rechallenged me with crestor, 10mg- took only 3 days worth and all my old symptons came back with a venegence- I suffered terribly and got some relief with the supplements and time- but was still a prisoner to my house- terrible headaches every day- my new doctor put me on Medrol pack of predinsone- felt great on the high dose- terrible again on the low dose- so he gave me more prednisone and weaned me off it after 10 days- I was hooked on the prednisone and began ordering it off the internet- 20 mg a day- felt really really good on 40 but didn't want to take that much- now its been 8 months and I'm trying to get off it but the tiredness and headaches come back- don't know if I should keep taking the prednisone or get myself off and see how I feel without it- the first day I hit 10 mg I spent the entire day in bed- its a real bummer

[Scared by Big Pharm]

It just amazes me that these doctors see a patient having side effects on a drug, but think that another version of the same poision is going to be o.k.
These aren't little side effects we are talking about...this is big stuff...muscle pain (which obviously indicates muscle damage...) etc.

Why can't they just admit this stuff is crap and let people get on with their lives?? Oh yeah, the kickbacks and the fact that most of them are major shareholder in the Pharma companies anyway.

Hope you do well....

Stay strong...
In our prayers...

[Biologist]

Some stuff on Vitamin D -- at least you don't have to pay the pharmaceutical companies for it! Plus, most people are deficient. I'm sure I am. Also, it's an immunosuppressant like the steroids, including prednisone, I think. The MS connection is sure interesting too.

[http://www.sciencenews.org/articles/20041009/bob8.asp]

MUSCLING IN:

Leg weakness is a common symptom of severe vitamin D deficiency. Five years ago, nutritional epidemiologist Heike A. Bischoff-Ferrari began wondering whether vitamin D affects muscle function in apparently healthy people as well. She was particularly concerned about senior citizens, who typically suffer from an inexorable muscle wasting that begins by age 40. So, she measured vitamin D blood concentrations in elderly men and women and found that individuals who had higher readings also had greater thigh strength.

Other correlations between vitamin D and health have captured researchers' attention. Kassandra L. Munger of the Harvard School of Public Health in Boston recently presented evidence of what appears to be a protective effect of vitamin D against MS. In two ongoing studies of 187,500 U.S. nurses, women getting at least 400 IU of vitamin D per day showed only 60 percent the risk of developing MS compared with women getting less of the vitamin, Munger and her colleagues reported in the Jan. 13 Neurology.

These findings not only confirmed a link seen earlier in animals but also fit with several long-standing geographic observations. The incidence of MS and other autoimmune diseases—in which a person's immune system attacks parts of his or her own body—tend to be rare near the equator, where ultraviolet light from the sun is intense and people produce abundant vitamin D."

___________

[http://dietary-supplements.info.nih.gov/factsheets/vitamind.asp]

VITAMIN D AND STERIODS:

Corticosteroid medications such as prednisone are often prescribed to reduce inflammation from a variety of medical problems. These medicines may be essential for medical treatment, but they have potential side effects, including decreased calcium absorption [53-55]. There is some evidence that steroids may also impair vitamin D metabolism, further contributing to the loss of bone and development of osteoporosis associated with long term use of steroid medications [54]. One study demonstrated that patients who received 0.25 μg of active vitamin D and 1000 mg calcium per day in addition to corticosteroid therapy after a kidney transplant avoided rapid bone loss commonly associated with post-transplant therapy [55]. For these reasons, individuals on chronic steroid therapy should consult with a qualified health care professional about the need to increase vitamin D intake through diet and/or dietary supplements.

__________

Also check out this video adec posted in another thread:

[http://www.insinc.com/onlinetv/directms13oct2005/softvnetplayer.htm]



Biologist