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27male, RAPIDLY losing muscle, been to 15 doctors, pls don't let me...

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 Posted 8/7/2012 6:15:46 PM
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Hi LEF members. I've been to roughly 15 doctors, I took guggulsterone, Vitex, D-Ribose, Carnitine, then Anastrozole, I have an unexplained rapid muscle wasting and they don't know what's causing it  After telling my specialists about guggul, they just turn me away. I have been rapidly losing muscle everywhere, my face, around my eyes, all wasted away but they're very subtle although my tongue now looks very atrophied, it's now gone to my tonsils, groin, entire body.

I took guggul around 2006 for acne, it worked but I think I OD'd after noticing that I'm losing hair everywhere in my body.

My free T4 reading is normal Sad(((

I then took Vitex thinking it would bring my hair back. My testosterone levels read normal but, estrogen not high, what should I do?

Neurologist told me I don't have ALS/Lou Gherig's. I just had a low vit d reading and am done taking the 50,000IU D2 prescription.

They don't know what to do with me. Then in 2010, I took carnitine and probably OD'd on D-Ribose since I felt very ill (didn't know it can lower blood sugar too and I haven't eaten at that time). the next day I noticed foamy urine. I get a proteinuria reading in my urine to this day but not high enough to be diagnosed as kidney disease accdg to my doctors. The other kidney markers are fine, although the serum creatinine is quite low for a guy, 0.83

Then in Oct 2011, one doctor Rx'd me with Anastrozole/Arimidex 0.25mg every other day to treat a supposedly gynecomastia, which I later found out is not gynecomastia. I took it for around 2 mos and the muscle wasting actually worsened from then on.

What is puzzling me is despite my 240min weekly HIIT training and <2000 daily calorie diet, I have gained 60lbs of fat and still gaining. Every time I lose 2 lbs a week I would gain it right back the next week and concurrently notice my muscles shrink. My neck circumference is now 16inches, last January it was 17.

Please guys, I cannot die yet I need to help my little sister and mother first, I'm the only father figure in my sister's life, please help me 

Could it be the D-Ribose, the Guggulsterone/Guggulipid, or the Anastrozole that has triggered the muscle wasting? Please save my life  ALl i want is to have my 16 y/o sister not worry about our mother and make them financially stable in this economic crisis. I beg you all
Post #6694
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 Posted 8/9/2012 4:48:21 AM
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Welcome to the Forums, fighter.

Although members may have some suggestions, we ask that you confirm any possible solutions with your physician.

Did you ever use statin drugs?  Have you been tested for HIV?  Does your family have a history of any type of cancer? 

You might find the information at http://www.lef.org/protocols/health_concerns/catabolic_wasting_01.htm of some use.

D Dye
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Post #6705
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 Posted 8/9/2012 5:49:29 AM
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I have low creatinine as well (0.76) with eGFR 118, but I haven't concentrated on trying to fix it yet as I have other known issues I am still dealing with.

I did notice you have a similar issue to what I have seen in myself, often when I exercise my Tanita scale claims I lose more muscle than fat, so I don't exercise too often, lol. Looking into it more over the past couple years it appears I have a problem with carnitine the blood level is nearly 3x normal. For a long time I had no idea what could be going on until I tested my manganese level and found out it was out of range low. I did a blood test for 50mg/day Mn intake yesterday and should have the results back on Fri/Sat. BTW do not megadose manganese without testing. My current working theory is that as manganese is used in MnSOD which helps mitochondria and carnitine is used to burn long chain fats in mitochondria that I have a problem there. If you can't burn long chain fats and you run low on carbs/glycogen then your body starts burning protein via gluconeogenesis, at about 60% efficiency aiui. I tried a low carb diet for a month last year before knowing about this problem and managed to throw my body chemistry off so much I melted my shoe insoles and sheets. I have also had urine bubbles my whole life, that I know of anyway, but test negative for proteinuria. I think it may be ammonia instead and have smelled it strongly at times. I can't find any way to have that tested for verification though. 

EDIT - Manganese deficiency is considered to be very rare/nonexistent in humans, so ymmv. Before megadosing Mn my level was 7.3 (range 8.0-18.7), with normal being somewhere around 12-14.

EDIT 2 - My level is finally up to 12.3 after 50mg/day.
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 Posted 8/11/2012 3:59:54 PM
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Hi calc and DDye. 
Calc your case seems very similar to mine :'( but looks like mine is much worse :'( :'(

Interesting on your carnitine, I had a bad side effect on it. If your carnitine levels are high then how come you are losing muscle? I thought carnitine is supposed to use fat? That's why I found it strange and scared to continue on it because of the symptom below in red

Some more specific info:

  1. So I took the guggul in 2006-2008, body and scalp hair loss started around 05/2006
  2. I took Vitex from 2006-2007 I think, 2 bottles max.
  3. I actually tried doing a low carb / paleo diet as I took Carnitine in 2009. *When I took carnitine I always had pain in lower back where the kidneys are :'( *
  4. I took D-Ribose for severe shoulder pain and the last I took it was in 2010 the day when I felt so ill to my stomach I thought I was going to pass out.
  5. I was given the Anastrozole in Oct 2011 and ran for 2 mos, only 0.25mg every other day.
  6. Probably took too much phosphatidyl choline. Is this bad?
  7. SYMPTOMS
    1. Unusual strong breath odor at the back of my mouth similar to when I first started the Paleo Diet. It's like a bitter/protein smell (is this my muscles being wasted away?)
    2. Muscle wasting everywhere, including mouth, tongue, throat, salivary glands, muscle around eyes.
    3. Rapid heart rate at rest since 2007
    4. High Blood pressure since 2007
    5. Still protein leakage
    6. pain in upper right quadrant of abdomen, last Ultrasound test only saw fatty liver
    7. Slightly elevated ALT enzyme
    8. Slightly low creatinine
    9. Normal-Low Testosterone, Normal-Low Free Testosterone = doctor said this is not the one causing the muscle wasting Sad
      1. TESTOSTERONE, ULTRASENSITIVE, LC MS/MS 287 (250 - 1100 ng/dL)
      2. Testosterone free 55.3 (35.0 - 155.0 pg/mL)
  8. CURRENTLY TAKING
    1. Life Extension Vit D 2000 IU/day accdg to physician's advice
    2. Grapeseed Extract 300mg
    3. Taurine
    4. OKG + Whey hoping to stop muscle wasting?
    5. Zinc gluconate, Mg glycinate
    6. Omega-3


DDye, I've been tested for so many things, no HIV no VD, no STD, no herpes no Hep A/B/C no Lyme (if the test is enough). No statin use but did try taking beta-sitosterol

Calc what do you suggest? :'(
Post #6730
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 Posted 8/12/2012 3:32:22 AM
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Guggul is definitely contraindicated if you have any thyroid issues.  A-HD will assist you in getting your musculature back, provided that you work out 1-2 hours every weekday morning.  7-Keto DHEA should help you to metabolize body  fat.  DMAE will help with brain metabolism.  However, your symptoms are such that you need to have a very thorough physical examination to see what's really going on.
Post #6733
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 Posted 8/12/2012 9:13:33 AM
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Hi, I just wanted to check what happened to my post that had an outlined detail. I was not able to save it elsewhere, please if it was not approved to be published, can I simply have the text saved for me? Please, thanks very much :'(
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 Posted 8/12/2012 1:25:13 PM
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Dear fighter:

New members's posts are subject to moderator review until a certain number of posts have been approved.  Since the moderator did not work on Saturday, your post was approved today (Sunday), hence the delay in its appearance.
Post #6741
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 Posted 8/12/2012 4:10:13 PM
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From what I have read carnitine normally doesn't come back high even under supplementation as the body gets rid of excess. My guess is that carnitine is high in cases of need but inability for the body to use it. I'm going to get my carnitine level tested again later this next month and see if it has come down from the high of 172 it had been.
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 Posted 8/14/2012 4:40:32 PM
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Just read this http://www.pnas.org/content/early/2012/08/08/1211314109.abstract about an ingredient in antibacterial soap that causes muscle weakness.  Although it is not the same as muscle wasting, by weakening the muscles one might contribute to their atrophy. 

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 Posted 8/14/2012 5:19:28 PM
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Thanks, DDye. I was wondering could this be some type of Sarcopenia? Calc raised the point about my testosterone levels being low for my age. 

I ask about sarcopenia since I lose too much muscle at a short span of time while I concurrently gain fat mass, this despite my strict weight training schedule and <2200 calories/day diet.

Also another strange symptom that I need to point out is the strange breath odor I have had since I first noticed having the very foamy urine and muscle loss. The odor if I can describe is like a pungent protein/urea/ammonia like smell that happens every single day. I would catch the smell in the morning, or everytime I try to swallow.

This is so worrisome as no doctor seem to know what it is. It's so sad :'( I thought doctors are experts and I feel so helpless
Post #6775
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