Dr. Beatric Golomb: Recommendations & Other Info

[pgrimm]

We visited with Dr Beatrice Golomb at the V.A. in San Diego this week. I will try to give you the points she made as accurately as I can. She is aware of Dr. Graveline's webpage, but no, she has not seen this forum. She was overwhelmingly informative, and I am limited in my ability to grasp and recall it all, so bear with me.

First, the list of supplements she recommends:

1. CoEnzyme Q10, Jarrow, taken three times a day, at least 100mg each tiime, can double, up to 1200 mg a day. Always try to spread it out over the day. The effectiveness will rely upon the freshness, and sometimes the quality of the capsule itself. If it tastes bad, it may be too old, get a fresh bottle. Store them away from heat. Important not to buy off brands, not effective, and you may have a nagative reaction.

2. Carlson Norwegian Cod Liver Oil, 2 teaspoons a day, either regular or lemon flavored. Make sure you refrierate. She believes this is extremely helpful in repairing mitochondria.

3. Viobin Wheat Germ Oil, find it in refrigerated secion of health food store.

4. Creatine powder, follow package directions.

5. Carnatine, she agrees is important, but gave no specific further advice.

Note: Do not take Vitamin E supplements, they will decrease the effectiveness of your other supplements.

Some other information as it comes to my mind.

WOMEN should not take statin drugs, there is no evidence that high cholesterol is ever harmful to a woman's health; it may even help her to live longer.

There are almost no studies done on the negative effects of statin drugs prescribed along with some antidepressants (Bill's case); however, she believes that there can be extremely significant interactions with some combinations. Interaction studies will be done in the future.

There are very few doctors who understand the negative effects of statin drugs. The drug companies will continue to give physicians the results of studies that support their products. Sorry, not the news you wanted to hear, I know.

Each individual has a unique vulnerability to mitochondria genetic mutations, inherited from their mother. Mitochondria DNA is different and separate from our other DNA. It can mutate at an extremely fast rate (cannot recall the number of times faster than our other DNA). Explaions variability in response to statin drugs.

It's not likely that a person will fully recover from the effects of statin damage to their muscles; however, Dr. Golomb has seen amazing results in patients who have followed the above recommendations for supplements. Sometimes the difference has been in the quality of the supplements, freshness, other ingredients, etc. Once this is controlled, the healing has been known to be rapid.

Diagnosis of myopathy accurately is tricky, and muscle biopsies must be very specific, not all biopsies are equal, and getting the right one approved is difficult. Dr. Phillips in San Diego does them and can give Bill the best diagnosis and prognosis of his muscle recovery. Without the right test, no absolute diagnosis is possible, but mitochondria myopathy would be Bill's most likely diagnosis if he could get the test. Most tests performed routinely will be normal for mitochondria damage, as we all knew.

If a person has had a negative response to statin of deterioration of their muscles, then they were genetically programmed to have mutations of their mitochondria and would not benefit from the statin anyway.

Any improvement after taking the supplements is a good sign; recovery rate is based on the invidual and their pre-statin vulnerability to mitochondria mutation.

Both Bill and are were struck by the sincerity of Dr. Golomb. She has obviously completely dedicated herself to unraveling all the complications involved in the damaging effects of statins on the body. She took almost an hour to talk with us, listened to us, and explained in unbelievable detail what these drugs do to the body. She was very warm, personable, humorous, and demonstrated enormous empathy for what Bill has endured. She never questioned why his health deteriorted so fast, she immediately validated that it was the interaction of the lovastatin and the antidepressant (mirtazapine) prescribed together. I saw absolutely zero signs of arrogance in this brilliant doctor; she is actually humble in her therapeutic approach. She did a complete exam, made referrals for minor concerns, ordered blood tests to look for things we have never heard before from other doctors, just very thorough. Now if only she could teach other doctors to care as she does. She hugged each of us at the end of our visit, and urged Bill to call even before his next appointment if he took a turn for the worse.

If my memory serves and other points come back to me, I'll add them here for you. I hope this is hlepful.

Pam

[pgrimm]

Try not to take Co Enzyme Q10 at night if you have any problems with sleep. It is stimulating cells to repair, and this energy can actually cause you problems with sleeping.

Activity: Use common sense, if you feel bad after exercise, you did too much. Listen to you body.

[gotts1936]

Pam, !!!Wow!!!. What a great post. Thanks for the information.

Gotts

[equestrian]

Thanks for all the info. Sounds like you are going to be our lifeline to her research.

[gotts1936]

Pam, one of your post said if you feel bad after exercise you did to much. What if you feel bad during exercise? I think I know the answer>

[cjbrooksjc]

Pam: Thanks so much. Dr. Golomb sounds like the female counterpoint to Dr. Langsjoen. Why are there (seemingly) so few of these wonderful, caring professionals? One sentence I couldn't unravel: "Explaions variability in response to statin drugs." Can you help me with that? I know it's a typo; I just couldn't puzzle it out. In any case, thank you so much for the info.

Best,

Brooks

[pgrimm]

Sorry about the typo, I wrote this pretty earling in the morning. I knew that if I waited any longer, I'd forget even more of all that she told us.

The word was "explains", that variability was accounted for by a person's inheritance of vulnerability to mitochondrial mutations. Why doesn't this forum allow you to edit? When I first came on it did. It's important to someone like me who gets in a rush!

[pgrimm]

Gotts, of course you know the answer to this exercise question. And it's NOT "no pain, no gain", that's for sure.

Bill went out on his first job today since he suffered from the muscle damage. He is a handyman who fixes sprinklers. He looks positively wiped out tonight. He's arguing with me that he can't stay laid off work forever. But then...I argue that after all the work we both due to get him well, one day can set him back so far. Isn't this the reason that people are entitled to sue drug companies? If you can't even work anymore, who is responsible? Just four months ago, this work was all he did, and he was absolutely strong enough to do it every single day. Now, one day, and it's overwhelming to his body. Makes me want to hit someone, like just one of his 5 VA doctors that prescribed these crappy drugs.

You guys are all so physical, not only in work, but in everyday life. It must be a devastating blow to you. On the other hand, I could kick Bill in the rear for taking this job. I religiously fill up his bowl with supplements, then watch him tear it all down in one day. DANG!

[cjbrooksjc]

It's a day-by-day thing, Pam. All he can do is try to get better, but it's so hard not to be dependable any longer; you feel so damn useless. I can only imagine what it's like for you or my wife (we both simply try to keep up appearances), and talking about it gets OLD fast! It's just a day-by-day thing... maybe tomorrow.

Kind regards,

Brooks

[BSGfan]

Four years ago Doctors Duane "Spacedoc" Graveline and Beatrice Golomb were interviewed by Joe and Terry Graedon, who do the popular series of The People's Pharmacy
radio shows and newspaper columns. An audio CD of this telephone interview may be ordered (Program #523: The Dark Side of Statins)
from *www.peoplespharmacy.com.

Graveline and Golomb were both very impressive and informative in this interview.

[cjbrooksjc]

Thanks for the link. Four years, damn.

[valgators]

Pam: Just want to thank you for taking on the challenge to look for answers. And in so doing, keeping us informed. I was anxious to hear what Dr. Golomb said and appreciate you sharing the information.
I hope Bill will benefit from her great knowledge and caring.
Valgators

[gotts1936]

Pam, I found it very interesting that Dr. Golomb mentioned Creatine powder in her recommendations. My son who is into body building told me he using Creatine powder after each work out to assist his muscles to repair themselves. It may be worth trying.

[pgrimm]

To respond to your generous thank yous, I am humbly grateful to have a way to give back to you all. I feel so incredibly fortunate to have found this forum when I did. Honestly, I don't think Bill would have made it out alive with just the "care" of his doctors at the VA. I got intelligent direction from so many of you, not the least the referral for Dr. Golomb!

As for the creatine, on my first visit to a nutirition store, I was helped by a clerk who was a young body builder. I was put off at first,thinking he wouldn't know anything about statin damage, but he was so helpful as well as knowledgable and found it easy to make the leap from a healthy body builder to someone who needed to repair from muscle damage. He explained that they have to also be careful regarding muscle damage with the weight lifting they do (he is a student who is going into nutrition for athletes). I took home a bag of supplements he recoommended, but not this one. I think he mentioned it, but as you know, I already had $200 worth on that trip. I'm going back to him today to get a few of these new recommendations.

By the way, the Carlson's cod liver oil is pretty expensive. I paid $44 for the large bottle, but found it elsewhere for about six dollars less, so shop around. At two teaspoons a day, I figured it wouldn't last all that long, so the larger one is probably more economical in the long run.

One more thing I think I forgot to mention. Dr. Golomb scheduled Bill for the test for sleep apnea. She thought there was a good chance he would have muscle damage in his throat as well, saying this is not uncommon. We thought his poor sleep was due to shoulder pain and headache, but this could also be contributing to his inability to sleep more than two hours at a time. Food for thought.

[BobbyH]

pgrimm

Did Dr Golomb speak to the impact statins have on the nerves in the body? Is her study going to address this side effect?

I don't know how large a bottle of Carlson's that you purchased however I just checked out iHerb pricing. A 16.8 fl oz bottle is priced at $24.62.

BobbyH

[harley2ride]

Pam,
I hope that Bill does not have Mitochondrial Myopathy, as that is what I have. And according to my Doc with the MDA, there are quite a few different sub types of Mitochondrial Myopathy. I can totally relate to how Bill has felt, and his inability to do things. The biggest things that helped me, with health, and expenses, was going to MITOCH from Vitacost, which had most of the pills I was talking, in one pill, instead of taking 15 - 20 pills a day, and getting on the NADH and Lyrica. I made huge improvements after awhile. Still not what I would call great, but a whole lot better than I was. But check with your doc on any meds... Taking the Lyrica is a bit scary, as it lists some dangerous side effects as well (but none have bothered me as of yet). I've been taking the Lyrica for about one year.. I had the sleep problems as well, where I could only sleep for a few hours. I have been on sleeping pills for over 3 years now, and I sleep 8hrs a night, and wake up refreshed.. (but wish I didn't have to take the pills every night).

Please feel free to ask me any questions that you want. I think you will like Dr. Phillips. I saw him twice..

[pgrimm]

No, she didn't get specfic about the effect of statin on nerves. Although she gave us an hour, we mostly just listened. She was very forthcoming in explaining, unlike most other doctors I've ever been to. Her focus was on mitochondria. I have no idea what the specific topic is of her study coming out. I will emai lher and ask that she inform me when and where I can find it.

She recommended that we purchase the Carlson's cod liver oil where it is kept refrigerated. I had not looked anywhere else, and didn't know how high this price was. Pretty good markup, huh? She did emphasize freshness with all of these supplements. Said that when someone tells her they're not working, that she told them to just throw out what they had and start with a fresh bottle, and they did get better. Made me paranoid about buying anything on the shelf or from mail order that wouldl have to be enroute for more than a day. It's probably a good idea to look at where we are stroing them at home, too.

[pgrimm]

harley2ride.....
Yes, it's a pretty good guess without the muscle biopsy that's what Bill has. He has good and bad days, but is definitely better than the first two horrible months. I haven't heard too many here say they had a headache. The doctor was not surprised by this. It was absolutely non-stop for almost three months, and always a "10". The VA doctors never said one word about suspecting the lovastatin, let alone the drug interaction, and in fact, when he came in for help, they actually doubled his dosage to 40mg!

Dr. Golomb completely agreed that this was the main reason for Bill, as the headache started immediately after he began taking an antidepressant. I've been researching this "drug interactions with statins" subject on the internet, for what sparse amount is out there. I've discovered that mirtazapine (a new SSRI antidepressant) and mevacor travel in the same pathway, so the lovastatin gets blocked (stuck?) and just keeps on doing it's thing. Wow, huh, an oversimplistic explanation, and the best I can figure this out, but not at all addressed by the doctors. They're so careless how they prescribe, and so ignorant about what drugs are in what categories and why you prescribe them together!

You know. I would like to know how many of the folks here are victims of drug interactions, not just the statin drugs. It's not mentioned much, but I suspect went on more than people think. I doubt there are too many here who were only on their statin drug and nothing else. Did your symptoms start abruptly, or were they over a long period of time?

[harley2ride]

My initial symptoms hit within 1 week of starting the Statins. After that, things I would notice changes over 4 - 6 months periods. I would get better for a bit when I would hit on the right dosages of the right supplements, then I would continue to slowly get worse. That continued for about 2 years. Once the doc added the NADH and Lyrica, I actually improved and had 1 pretty good year. Then I went downhill pretty bad, upped my Q10 and L-Carnitine, and improved again.. It is quite the roller coaster ride.. :)

[pgrimm]

Yes, that's exactly what Bill experiences. I empathize with you, you get up one day and feel better and it sure can get your hopes up. Bill makes plans to work, then he has a bad night, and gets very discouraged. Especially when he does so little phsycial activity and it really gets him down the next day. I am disgusted how the doctors make the assumption that if you stop taking the statin, you will feel better then next day. As if there is no damage done that will take so much time to heal, and as if you can expect it to be 100%! I would like to think that at best, they are just ignorant, but it's hard to imagine that they are aware of the reality of this situation. If you do street drugs or even abuse alcohol, you don't escape without some serious damage when you stop using! I never was that trusting of most doctors, now I'm much less. And on top of that, they can be so arrogant!