Anyone here taking TRT HGH NO TT whatever?

[linter]

hi all:  i have a nerve-killing thus muscle atrophying disease called CIDP (for short) and in many ways i feel like i'm wasting away, to the point where sometimes i pass a mirror and think i've walked straight out of andersonville.  well, not quite, but i can touch my fingers together around my ankles and the like.  trad docs have no clue what caused this (in my case) and can offer no suggestions for slowing down the disease or even for trying out new, untested things.  basically, they've left it  up to me.  and did i mention that if i didn't hop myself up every day with either adderall or provigil/nuvigil, i'd be sleeping most of the daylight hours? ugh.  anyway ...

given that no one has a clue what to do, i thought i might as well start experimenting on my body.  at the age of 61, i've got nothing to lose.  plus, i've got a doc who (for better or worse) will prescribe me just about anything i want, within reason.

so now i'm wondering about TRT and HGH and whether in combo they might do something for me and my fading_muscles/fatigue/dead_nerves and so on, either directly or indirectly.  as i said, the doctors don't know, so it's nothing i can ask them, which is why i've decided to seek anecdotal evidence with questions like these.

hey bill -- i know you ordered some NO a few years back.  did that do you any good?

and around the same time, someone here was touting Tribulus Terrestris (TT) aka Puncture Vine as a supplement to increase natural T levels.

i dunno. i'm thrashing around.  so if anyone's got any ideas, legal or otherwise, i'd love to hear em.

(i guess probiotics for the gut are all the rage now, and i'm going to see a holistic-type doc [and former regular doc] to see if he thinks he can help, which i'm sure he'll say he can, but i'll have to see.)

thanks!

 

[supsurf-tw]

None of the oral test boosters work so save your money. The gels are ok but injections are the best. Understand that increasing test through these avenues serve to shut down your body's need to produce its own. If you start you really can't stop or you'll take a huge plunge on your natural T level and be worse off than before. Estrogen increases also when supplementing T. Your doctor will fill you in on what to do.

[Admin]

Hi Linter,

One thing to consider would be the direct effect on your immune system: http://www.hgh.org/Benefits/HGH-Boosts-Immunity.html

You may be strengthening an immune system which is already in overdrive.  I know that a lot of docs suggest that autoimmune disorder patients stay clear of any supplements that boost immunity. 

Is your weakness in both legs and equal in severity?  Is the rest of your body affected?

[Subber]

Hey linter,

Quite a few people have personally solved "unsolvable diseases" by switching to a high fat, low carb diet.
Search under "Keto diet."  It may help you; I don't know for sure.  They eat only about 5 carbs per
meal - about 20 carbs per day, moderate protein and a high proportion of healthy fats (which
is likely in disagreement with conventional wisdom/knowledge you may have).  I was on a strict Keto diet for about 9 months and lost 20 pounds, became a fat burner -maintained that lower weight for six months.  I did it too lose weight and to gain stamina both of which were achieved.

Subsequently, I don't watch the carbs near as much and have gained back half of the pounds I had lost,
BUT at probably a higher proportion of muscle than fat in that weight gain.  Over all, I look and
feel quite a bit stronger and am more resilient, of course, in conjunction with SUP surfing BUT I had been SUP surfing
the three previous years.  My friends were impressed that I was able to get an improvement even years after working out so diligently.  I'm about a year younger than you are.

The key with keto (and dieting) is you want to keep or gain muscle - losing fat (if you have any) is an added benefit -
in most diets a lot of the weight they lose is muscle - keto avoids that, I do believe.

If you want more information, let me know.

[linter]

thanks, guys.

didn't know that about T and autoimmune, and my thing is termed an autoimmune disorder.  crap.

both legs and feet are involved, though the right ones are about 20% more in trouble than the left.  one odd consequence of the nerves in my feet dying is that in response my toes have pulled up hammerstyle.  i've gone from a 10.5 wetsuit bootie to an 8. crap, pt 2.

yes, other areas have come under fire.  lost a lot of muscle in my hands.  and my fingertips are slowly, haltingly, going numb.

but right now i'm thinking more about my legs.  i can't ride a quarter mile on a bike, for one thing, which explains why i recently bought myself an electric bike.  otoh, i can go surf for 2 - 3 hrs straight (as long as I've drunk a ton of water and remembered my adderall).  one thing is, long waves, while i love em, are a problem, as my legs wear out super fast when used to pump the board down the line or, in fact, when i am standing still with knees bent.  another thing: once i'm done w/ 2 hrs in the water, i can sleep the rest of the day, adderall or no adderall.

so, lots of stuff is going on, with no medical source able to offer any real advice.  i mean, they all have something to say, but it usually boils down to: nothing we can do, sorry.  and maybe they can't, and maybe there's nothing to be done for it.  but if that's the case, like i said earlier, i might as well experiment on my body and see if i can't luck into some improvement or whatever along the way.

subber: i'm not in keto but i've done  low carb / hi fat for a long time, if only because it makes me feel better than lots of carbs.  over the years, i've lost weight, some of that's been fat, i know, and some of it has been muscle, because of the atrophying.  i do have a minimal amount of muscle left in my legs (i'm guessing that this is true mainly because i can still stand) and would love to figure out a way to slow down its disappearance.

[goodfornothin]

Look at those ingredients I texted you.  Ill.combine them with cbd oil. It should help with the green dragon I sent.  I made a stronger version. Are you out of.the last batch I sent?

[Admin]

Linter,

I hear you.  You and I need to go hiking together. 

Have you looked into Biotin at all?  It is considered neuro-regenerative at very high doses.  I am not sure if they are looking at it yet for CIDP.  It may be worth running by your doc.  They are seeing some positive signs for progressive MS.

This sentence in an MS conversation came up in a quick search (no reference was given), "Growing evidence from recent studies in France support the role of biotin in ameliorating the course of demyelinating neurological disorders such as ms, cidp, and idiopathic neuropathy."

[linter]

thanks for chiming in, goodferlotsofthings!

admin: nice find!  never even heard of biotin.  did a little search and see that the MS sufferers are quite positive on it.  it's OTC, but the doses are so high, that to escape impurities, you need to get the stuff from a compounding pharmacy and i gather that requires a prescription, which i don't think would be a problem for me.  further investigation is in order.

[Admin]

Hi Linter,

There are two groups that sell pure Biotin in Bulk.  The one I am using is linked below (the dose is 300 mg/day).  The MS studies that have showed benefit/improvement were for Progressive MS.  There are no other drugs for Progressive MS (they do sometimes prescribe chemo but screw that) so as you can imagine the group involved was/is stoked to have something showing positive signs.

http://www.bulksupplements.com/products-by-goal/mental-wellness/pure-biotin-vitamin-b7.html

Here is the Facebook group (lots of details there - you need to request admission but they will approve you immediately).  https://www.facebook.com/groups/BiotinForProgressiveMS/514580968696128/

Someone just posted this over there:

High Dose Biotin For Other Immune System Diseases
A Japanese study found biotin effective for a very serious form of psoriasis, plus it mentions other immune disorders:
"patients with psoriasis vulgaris, systemic erythematosus, atopic dermatitis or rheumatoid arthritis also had biotin deficiency with the subsequent metabolic abnormalities and immune dysfunction, and so the biotin treatment provided beneficial effects in the therapy of the diseases, as in the case of palmoplantar pustulosis."

Also check this out: http://www.ncbi.nlm.nih.gov/pubmed/10577274 .

[PonoBill]

What's NO? I've been considering TRT, but that's just to wake up my pecker, which seems distracted sometimes, and maybe get these man boobs under control. I do keep a bottle of Concerta in the desk drawer, but it's for those rare times when I want to narrow the 500 cable stations playing simultaneously in my head into just one or two. Man, those Hydrangeas are looking great.

Seriously, what a great place the Zone is. You can find out what board you should get, where to surf or downwind, get diet and exercise tips, and how to fight your autoimmune problems. Best of luck with your battle, you guys are on the outer, outer fringe of the spectrum of people fighting these diseases. Most people back off from everything when they get that kind of diagnosis, I know you guys won't.

[supthecreek]

Erik.... it all falls under "this sucks"..... but I did smile  at "otoh, i can go surf for 2 - 3 hrs straight "
You are def channeling your inner SUP

My friend Greg O'brien has had full blown Alzheimer's for 10 years... and yet he just stooped driving several months ago.
He travels the country giving speeches on his new book about living with Alzheimer's "On Pluto: Inside the Mind of Alzheimer's"

I spent a fair amount of time with him as he wrote his book.
You would not know that he is anything but brilliant, engaging and fully capable.

I keep telling him that HE is the answer.... his brain is doing a "work around" things he shouldn't be able to work around.

the point:
The human brain is an amazing thing.... keep channeling your passion, and keep searching.... something caused it.... something may cure it.

[linter]

creek: i'll keep working at it and try to keep calm but then sometimes i start to panic ... especially if i find myself with too much time on my hands and start thinking about it or going down the internet rabbit hole into the far reaches of the Worst that Can Happen.  but like ponob says, this site is an amazing resource not only for information but also for optimism, both of which are sometimes much in need.

bill: nitric oxide as per: http://www.xgeez.com/2011/01/supplement/.  lots of sources for it on amazon but i have no idea whether it's just another helping of snake oil.  what was your take?

admin: thanks for the links.  i'm going to try that stuff.  has it helped you in any discernible way?

my last resort is stem cell transplant but the recovery time coming out of brain fog can take up to a year, and i just can't afford it.  not in terms of money but in terms of time away from work: in my job, out of sight is out of mind.  also: i don't know if i could live away from SUP for that long.

[hbsteve]

Have you tried acupuncture?
Sometimes those folks know things about the human body that are just amazing.

[Admin]

admin: thanks for the links.  i'm going to try that stuff.  has it helped you in any discernible way?

Hi Linter,

The people who noted a positive result in the MS study started to see signs after 3 months.  I am only a few weeks in.  The powder tastes fine and I have no side effects.  Well, I have a small ear growing on my Johnson but other than that, nothing.

Here's my kit:

www.amazon.com/gp/product/B0012TDNAM/ref=oh_aui_detailpage_o00_s00?ie=UTF8&psc=1
www.amazon.com/gp/product/B0009X1P9S/ref=oh_aui_detailpage_o01_s00?ie=UTF8&psc=1

[supsurf-tw]

Have you tried resistance training?

Getting a mind\muscle coordination can really put the strength back in.