Re: How can I recover? (Please help) by Blistering Fate ..... Accutane, Roaccutane, Isotretinoin Survivors
Date: 9/26/2012 9:07:58 AM ( 9 years ago ago)
So many things in common with me, excepting I never took accutane, however I seem to fit in that severe category of sickened people on the Internet. I especially can resonate with the Ho Who Shou thing I spent much hours memorizing reviews in iherb and trying countless herbal combos (with some success I must say, now that I have 0 zero libido I realise)
Anyway, I am doing nutritional balancing now. I think it can work. Right now im very discouraged about it and my life, family situation etc in general but I will hold on because all the info and experience of people on the protocol make much sense.
Two links that will be of great utility to you (they were to me):
And this one used to be a viable link to a thread in propeciahelp but now it seems you need to convince the staff there to get a permission to view the posts, happily I copied it back in the day in my thread:
"Greetings fellow sufferers,
A few of you may recognize my handle name, as I posted here semi-frequently several years ago. To refresh anyone's memory (or just introduce myself), I took finasteride for about two weeks when I was 19, and suffered the typical gamut of side effects for upwards of six years. I took a pretty pro-active role in trying to figure out what my issues were after visiting seven different doctors in three countries to no avail, and ended up using myself as my own human guinea pig. I tried different hormone regimes, diets, and even a fast, and eventually ended up pursuing different supplement routines to boost neurotransmitters (specifically dopamine, but I also dabbled with GABA, serotonin, and acetylcholine).
Well, fast forward to now. I'm doing a hell of a lot better, and it turned out that most of what I was doing was moot. Granted, I got some great results from some of the self-devised protocols I attempted, but even the longest-lasting results eventually faded away into some tide of side effects. Finasteride kept seeming to win out. Blast!
Anyhoo, long story short: I found a pretty amazing nutritionist who really got me on the right road to recovery. I'll spare you the details of how I found him, or my whole health odyssey in general, but here's the meat and potatoes of everything you may be interested to know. Please note that I am not a doctor, merely a theoretical syntactician with a rabid new-found interest in naturopathy, and that I can't guarantee everybody on this board has the same problems, or that what turned out to be my personal solution will work for everybody (or even anybody) else.
I found a nutritionist who facilitates hair analyses through Analytical Research Labs based in Phoenix, Arizona. I kept my head hair so short that I had to send my pubes off to be whizmagigged in a lab. Reputable hair analysis gives a pretty accurate account of the composition of different minerals and nutrients in your body, and based on the results the lab delivers, a competent nutritionist can make several recommendations (supplemental, dietary, and lifestyle) to get your body into optimum shape.
2. What the crap was wrong with me
According to my first analysis (I've since had two and am about to send off for a third), I had two main problems. Primarily, my sodium:potassium ratio was crazy low (about 1.2:1 when 2.5:1 is ideal), which was causing massive fatigue and indicating the ever elusive "adrenal exhaustion." Secondly, my body had stupidly high amounts of copper.
3. Copper Toxicity
Copper toxicity is just the state of having too much copper in your body, but it f***s with you like whoa. Unfortunately the literature on it is appallingly slim, but Analytical Research Labs and Dr. Larry Wilson have some informative (if not a little poorly presented) articles on the subject. I highly suggest you all read them, as copper toxicity accounted for all the seemingly paradoxical side effects I was experiencing after finasteride: fatigue, low cholesterol, low blood pressure, low sex drive, low blood Sugar yet no appetite, brain fog, and anxiety.
After my first analysis, my nutritionist made a few dietary recommendations (namely to consume protein whenever possible and to cut down on Sugar and starches) and also advised me to take a handful of supplements (a multi-mineral, multi-vitamin, calcium/magnesium supplement, digestive aid, ground-up adrenal glands, and ground up thyroid glands). After the progress I made by my second analysis, I was able to cut out the thyroid stuff, and am now taking five supplements three times a day. Everything is pretty low dose, and between them and a sensible diet, my side effects are greatly diminished. I have a ton more energy, can think much more clearly, deal with stress like I used to, and--I'm sure what everybody's hoping to read--my sex drive and erectile function is back. Every so often I'll go through a bout of detoxing (basically, my body produces enough energy to start pushing out more and more copper, which can cause side effects to temporarily flare up while the body processes it), but 90% of the time is fantastic, and good/normal days vastly outnumber the bad ones.
5. Concrete Information
My nutritionist's name is Alex Tuggle, and his clinic, Holistic Back Relief, is based in Berkley, California. He's foremost an accupuncturist but deals extensively in nutrition, and I can verify that he's the real deal. He deals with people over the phone and online, so you don't have to worry about expensive travel fees.
The initial hair analysis is $140, and each subsequent one is $90. Alex will provide a 90-minute consultation for each test free of charge, and I called him every once in a while to ask him a few questions or run something by him, and he always made himself available. Retesting is recommended every 3ish months. The supplements the lab and Alex will recommend can cost anywhere from $50-100 for a month's supply, which I realize may be steep for some, but they've done me a whirlwind of good, and given how much money I've spent on blind stabs in the dark, this isn't much of an expense to bite off.
Unfortunately, depending on how bad your symptoms are, recovery takes time. When I first started the protocol, I felt absolutely amazing for about two weeks, but then I started detoxing (i.e. ejecting copper from my soft tissues into my blood stream) and felt god awful. The supplements are designed to help minimize the side effects as greatly as possible, but they're not always enough. There might be a few moments of hell, but I can personally attest that the detox side effects are no worse than the state I was in after experiencing gradually worsening finasteride side effects for close to six years. After about five months on the program, I felt consistently good with little bouts of detox here and there.
Alex Tuggle, nutritionist extraordinnaire
Copper Toxicity Symptoms and Treatment: http://www.holistic-back-relief.com/cop
(Just check out his Contacts link to request a hair analysis)
Copper Toxicity Syndrome: http://www.drlwilson.com/articles/coppe
Eliminating Copper: http://www.drlwilson.com/articles/coppe
Analytical Research Labs
Copper Elimination: http://www.arltma.com/CopperElimDoc.htm
6. Protocol Details
Basically, I took supplements three times a day: in the morning after waking up, then at noon, then again at 5pm. I avoided junky food and was gangsta about eating hard-boiled eggs as frequently as possible to get an adequate amount of protein into my system. I avoided soy protein and whey protein as they seemed to worsen my side effects. It took quite a while for my reactive hypoglycemia to simmer down, so I still did experience dips in mood after eating for a few months.
The supplements I have taken (some of which I am now off) include:
Limcomin (multi-mineral to increase intracellular sodium),
Endo-Dren (adrenal gland concentrate),
Thyro-something-something (thryoid gland concentrate),
Endo-Pan (multi-vitamin to support adrenal glands)
Ox bile (exactly what it sounds like; did wonders for me; I recommend Jarrow's Bile Acid Formulations)
Dehydrocholic acid (a digestive aid; this did not work for me at all and I quickly discontinued it in favor of the ox bile)
The question we're all wondering is, How the crap did finasteride do what it did to us? Unfortunately, I can offer no concrete answers, but given all the reading I've done, it seems like, at least in some users, finasteride can a) cause liver damage (just google "finasteride hepatitis" for some horrifying reading), and b) drastically increase estrogen levels. Estrogen is positively correlated with copper, meaning that as one increases the other one increases as well, and if your liver is at all malfunctioning, your body will not be able to excrete copper at all effectively. As copper piles up, it keeps estrogen at high levels, and the copper itself literally starts piling up on your liver. Once your liver is full, copper will start piling up on your brain. Between this crap going on and the fact that excess estrogen levels for some reason start antagonizing thyroid and liver function, you can see how anybody's endocrine system goes down the tubes if they're susceptible to this poison.
This is just my little brainstorm, and I have no idea if it's what has actually happened to me, let alone all of us, but I feel a gazillion times better having been on the protocol for a few months. My second analysis showed a ton of crap working its way out of me (my body is excreting much more copper and even manganese, as well as mercury). I'd be happy to post my results as soon as I can access a scanner, if anybody would be interested in looking them over.
8. What you can start doing immediately
If you're interested in pursuing naturopathy (and I highly, highly recommend it), here's some stuff you can start doing today:
1. Contact Alex and request a hair analysis kit. It'll probably take one month to get the results back after you send off for one. He's been really flexible about payment in my experience. And if you don't have much head hair, you can send off pubes. If you shave your groin, go au natural for a while.
2. Start taking ox bile. It's amazing stuff. I recommend Jarrow's Bile Acid Formulations, which is available at iherb.com. Take one tablet three times a day (maybe two tablets three times a day if you feel the need), and you can expect some cramping the first week as it helps your body break down some gross stuff inside of it. While on the bile, I immediately noticed a dramatic decrease in anxiety, brain fog, and fatigue. Bile is the main excretory channel for both excess estrogen and copper, so go figure. Note: be near a toilet at all times or you will sorely regret it. Emphasize on sore.
3. Look into Vitamin B1. Although not heavily emphasized in my protocol, Vitamin B1 has been a god send for me. It prevents the formation of lactic acid, and I feel that lactic acid was the main force behind my brain fog and god-awful calf cramps. Vitamin B1 also increases sodium, which I desperately needed, providing a very welcome boost in an unexpected way. A reasonable dosage is 500mg three times a day, and an additional 500mg whenever you feel the need.
4. When experiencing a particularly nasty bout of anxiety, try a high-grade cal/mag supplement. Calcium mops up lactic acid and also slows down your entire metabolism, which can take the edge of an anxiety attack. Note that initially, calcium could exaggerate feelings of brain fog.
I realize this is a ton of information to digest at once, but if anybody's interested, I'll make myself available via private messages. I'll also try to check this board for any comments on this thread. I'm not going to reply to gratuitously dismissive messages, but if you have a legitimate question, I'd be happy to volunteer what I know.
In closing, I hope this information helps somebody! If I had been aware of hair analysis and naturopathy when I first got into this mess, I can't imagine how much faster I would have recovered. It's been a nightmare for sure, but the good part is that I found my light at the end of the tunnel. I've got my fingers crossed that we're all on the same train track."
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