Adrenal Issues and treatment problems

[jeffrez]

That's a pretty good dose that conceivably might have effects in some people. I take about 4-6 grams a day, but can't say I really notice much from it. It might have been the ribose.

 

[moblet]

Has anyone ever tried acupuncture or other energy work for their adrenals? If the problem is upstream in the pituitary or hypothalmus, it seems like you would be able to get at it that way. There are acupuncture points for every organ all over the body.

In a word (which can't be limited to a word because a post has to be at least 10 characters long),yes.

 

[caledonia]

I'm really excited to have found this page on the Dr. Lam website - http://www.drlam.com/articles/adrenalexhaustion.asp?page=5

it explains that in the later severe stages of adrenal fatigue, it's normal to:
a) be intolerant of normal doses of adrenal supps (that's me!)
b) feel fatigued from taking Cortef - (that's Spitfire!)

and that you shouldn't give normal doses of adrenal supps to people in those stages like my dumb *ss naturopath is trying to make me do.

"As you can see, low hormonal and low-clearance states, which has began in earlier phases, gets worse quickly. These important clinical hallmarks are frequently overlooked. In this phase, the adrenals have lost most of their ability to serve as the body's stress control center. They become hypersensitive. Attempts to jump start them quickly usually fail. Traditional medications, nutritional supplementation and the classical macro nutritional programs seldom are successful and may in fact backfire."

 

[heapsreal]

I also came across that site when i was trying to work out my whacky reactions to pregnenolone and he mentions pregnenolone and the reactions i was having. vit b5 i have found good, im using 500mg caps but today found that taking 2 just abit to stimulating, so back to 1 a day for awhile. We need to take it easy and slowly. My adrenal hormones especially dhea is really low.

cheers!!!

I'm really excited to have found this page on the Dr. Lam website - http://www.drlam.com/articles/adrenalexhaustion.asp?page=5

it explains that in the later severe stages of adrenal fatigue, it's normal to:
a) be intolerant of normal doses of adrenal supps (that's me!)
b) feel fatigued from taking Cortef - (that's Spitfire!)

and that you shouldn't give normal doses of adrenal supps to people in those stages like my dumb *ss naturopath is trying to make me do.

"As you can see, low hormonal and low-clearance states, which has began in earlier phases, gets worse quickly. These important clinical hallmarks are frequently overlooked. In this phase, the adrenals have lost most of their ability to serve as the body's stress control center. They become hypersensitive. Attempts to jump start them quickly usually fail. Traditional medications, nutritional supplementation and the classical macro nutritional programs seldom are successful and may in fact backfire."

 

[caledonia]

So this Dr. Lam seems to have a very good understanding of things. They sort of vaguely mention that you can be "coached" by him and there is an 800 number on his website. Has anyone ever done this? Cost?

If you had a choice of who to (phone) consult with on adrenals, would you go with Dr. Neville at the Clymer Center, or Dr. Lam?

 

[heapsreal]

i did the email thing on his site but got no reply, so im not sure if the site is active.

cheers!!!

 

[heapsreal]

mmm, $$$$$, there would be other docs out there that could help just as well and not cost as much. His info on the site seems quite good but the red flag go's up when they start asking for big somes of money. Reminds me of teitlebaum and his book- from fatigue to fantastic, it has good info in it, but u can see him pushing his overpriced supplements.
Lets take what info we can get for free and run, we can sort it all out here, lol. then its free for everyone.

cheers!!!

I talked to Dr. Lam once. He wanted relatively huge sums of money in advance ($500+, iirc, then more later as 'treatment' progressed), it seemed basically just so he could 'guide' me in taking some vitamins and supplements. He seems to have good basic info on his site, but I was turned off by the subtle scare tactics (e.g., "if you don't listen to an expert like me, you will really screw up/die," etc). Not saying he doesn't help people - I can't really speak to that. For the money I would hope he does, but you know, that's a lot of money for someone just to tell you to take B5. I think he or some of his patients are active on curezone, you might want to ask there for a view from someone who might have had more contact with him and his program.

 

[August59]

Dr. Lams website has a wealth of information. He is trying to parlay all this info into lengthy treatment protocol that results in his wallet wealth. I can't say that I wouldn't do the same thing if I was in his shoes. I doubt he is rich and it could be worse as a new patient appt at Dr. Cheneys office is going to cost you $9000 (I don't care who the doctor is! - $9000 is wrong, very wrong in my opinion, but I'm not sure how accurate this number is either).

The up side for all of us is that we are collectively the most knowledgable patients group bar none, including past and present in the world (my opinion anyway). All of the information on Dr. Lam's website is there for us to educate ourselves as well as our physicians. Listening to our symptoms and body, plus together with our physician can use it to make educated adjustments and take it slowwww. My biggest downfall is my lack of patience and I don't think I'm alone on this one.

I often wonder how the physicians in the world are going to receive patients as knowledgable as we are, when the biological cause for CFS requires us to engage with mainstream medical establishment on a monthly basis for labs and meds (in theory). They are not going to know what hit them, but there will still be the ones that think we are "crazy". So, just look them eye and pause, then say BOOOO!!!! We can take bets on how far they jump?????

I'm rambling again and I needed a little humor after this week. Oh well, it is Friday night!! Have a great weekend!

 

[heapsreal]

Ditto, couldnt agree more!!!

cheers!!!

Dr. Lams website has a wealth of information. He is trying to parlay all this info into lengthy treatment protocol that results in his wallet wealth. I can't say that I wouldn't do the same thing if I was in his shoes. I doubt he is rich and it could be worse as a new patient appt at Dr. Cheneys office is going to cost you $9000 (I don't care who the doctor is! - $9000 is wrong, very wrong in my opinion, but I'm not sure how accurate this number is either).

The up side for all of us is that we are collectively the most knowledgable patients group bar none, including past and present in the world (my opinion anyway). All of the information on Dr. Lam's website is there for us to educate ourselves as well as our physicians. Listening to our symptoms and body, plus together with our physician can use it to make educated adjustments and take it slowwww. My biggest downfall is my lack of patience and I don't think I'm alone on this one.

I often wonder how the physicians in the world are going to receive patients as knowledgable as we are, when the biological cause for CFS requires us to engage with mainstream medical establishment on a monthly basis for labs and meds (in theory). They are not going to know what hit them, but there will still be the ones that think we are "crazy". So, just look them eye and pause, then say BOOOO!!!! We can take bets on how far they jump?????

I'm rambling again and I needed a little humor after this week. Oh well, it is Friday night!! Have a great weekend!

 

[Misfit Toy]

I started on the Chinese herbs and acupuncture route. It's only been 3 days....no effect yet. On licorice and cinnamon. Boiled herbs. I am quite depressed. I have pain when I wake up; actually, it wakes me up and it's where the kidneys are. I am so exhausted. I have a feeling this is something that doesn't just heal, as I have been dealing with the adrenal problem for as long as I can remember with this disease. Someone wrote earlier that the adrenals may not heal due to having a pathogen. Well, of course not. I think that's a lot of what is going on here. Mine never heal due to the initial and continuing attack on them. I had EBV, mycoplasma, etc and my cortisol was high for years, then it became GONE. Just a few months ago, I was running around and busy. Now, I am disabled and totally disabled.

 

[moblet]

I don't have the exact same issues as you, but I didn't start healing until I came to complete halt, and even then it was about two years before I noticed any real positive changes. Fortunately it's an accelerating process. I wouldn't expect your body to be any different after such a long time - healing won't be fast, and it can't happen until you are able to stop and let it happen, no matter what treatment you throw at it. If you are now totally disabled then at last you have the excuse you need to simply stop.

 

[heapsreal]

Although i feel i have improved alot and im working fulltime with a struggle, i think im ging to have to cut my workload in half if im going to improve anymore. Im not doing much outside of work and im just holding onto managing working full time. The only thing that seems to be holding me back is my poor adrenal hormones which are low, the viral load is down. Its strange but i just feel like i cant get enough rest, although im bored out of my brains at the same time.

cheers!!!

 

[TheMoonIsBlue]

I feel for you, Spitfire (and everyone else)

I am so, so ill also.........the past four months or so, I have crashed in a way that is unlike anything I have ever experienced before. I go through periods of total body shut down (but my mind still wide awake usually), then suddenly it will go away.

My hormones are a MESS and I can not get any help. I went to a doctor to do hormone/adrenal testing- but I ending up not being able to do the saliva testing because they said that because of my fluctuating sleep schedual (backwards), it would not be accurate if I could not do the tests at the times directed.

So I ask my Gyno for blood tests and they say, hormones fluctuate so much every day, a blood test will be useless. But then they say, there's differing opinions whether blood or saliva tests are better. Ok...... "I don't see how I can help you." They tell me to go back to the doctor who was going to do the testing in the first place. I say I CAN NOT, I could barely make it HERE today to get my friggin' pap smear. Look at me like I'm crazy.

I can NOT get to any doctor now as I am SO ILL. I have barely been able to sleep. Waking up constantly. Sweating in my sleep. My brain fried and can't turn off.

I have had TWO menstrual cycles now in one month- this latest one lasting 8 days so far (usually last 4-5). The only other time I have ever had two periods in one month, was when I was on Low Dose Naltrexone (stopped that over a year ago).

Does anyone know what it could mean adrenal/hormone wise that I am getting two menstrual cycles a month, and lasting way longer than usual? I am in my late 20's.

What the hell does a person do when they are too ill to get to a doctor??

P.S. Has anyone tried Pantethine? "Pantethine is also considered the “antistress” vitamin because it supports healthy adrenal cortex function and hormone synthesis, particularly during times of stress."

 

[caledonia]

Sleep cycle and 4 point saliva testing - my sleep cycle also moves, but it moves forward. I sleep a lot and you don't sleep very much, so maybe that's the difference between why mine moves forward and your's moves backwards.

I keep a sleep chart that I keep that helps me figure out my sleep pattern over a period of time. It's just a grid with the hours of the day/night running along the top and the days of the month going down the left side. Whenever I get up from sleep, I just walk over to the computer and color in the rectangles representing how long I just slept. I do mine in an ancient Mac drawing program, but I bet you could just print out a grid in Excel and hand color it in and get the same benefit.

In other words, something like that would help you see that there is a definite pattern to your sleep and it's not just random.

I had a 25 hour sleep/wake circadian cycle instead of the normal 24. With treatment it's gotten a bit shorter, probably more like 24-1/2. Yours sounds like it might be more like a 23 hour cycle.

So my point here is, when you do the saliva test, just tie it to where you're at in "your" cycle that is the equivalent of a normal person's cycle. A good clue is when do you eat breakfast, lunch and supper. So let's say they want the first sample at 8am. That's when a normal person would eat breakfast. If your breakfast is at 5pm, you would do the first sample and write down that it's 8am. Hope this is clearer than mud - lol.

2 periods in a month - I just saw something about that and heck if I can remember exactly where, but possibly on Dr. Lam's site. Adrenal hormones affect a bunch of other hormones, so no wonder.

 

[TheMoonIsBlue]

Hi Caledonia- Thanks for your thoughtful reply.

If I can ever get back to the doctor, or any doctor, I will ask more thoroughly about the saliva testing and accuray/inaccuracy due to my sleep cycle disorder.

Actually, my sleep cycle does move FORWARD like yours- even though I go through periods of barely sleeping! It does not matter- even if I only got 4 broken hours-which just about kills me- (now, it isn't ALWAYS this bad, thankfully) my sleep cycle STILL moves forward even though I am getting more and more sleep deprived.

It has never, ever moved backwards. That is to say, even if I slept like crap the day before, if I didn't fall asleep until 5 am yesterday, I won't fall alseep until 5am today (approximately). Again, if I could get to a doctor, perhaps I could discuss adding additional medications, but I can't.

Ahh! Frustrated

 

[caledonia]

I'm sorry to hear you also have the forward-moving sleep cycle like me, because it causes a lot of problems being able to socialize with other people.

But at the same time, I'm glad to hear about another person with this problem. I thought I was the only one, even among the ME/CFS adrenal fatigue crowd.

 

[caledonia]

I would also like to mention the one thing which has helped my sleep a lot, which is magnesium. Your adrenals control the levels of salt and magnesium in your body. If you have adrenal fatigue, you will be excreting them like crazy and need to replace them.

I went through a whole exercise of doing a sleep study (not a bad idea anyway if you have poor sleep). I found out to my surprise that I was twitching my feet a million times a night, which, of course, was making me sleep horribly. I politely declined their offer for a prescription of Xyrem, and instead greatly increased my magnesium intake. Problem solved.

I'm taking 5 tsp of magnesium glycinate powder dissolved in water, spread throughout the day. I think that's about 1500-2000mg.

Medicare paid for the sleep study, even though they acted like they weren't going to.

 

[dannybex]

That's weird. I wonder why I feel so good on it then. It takes away that hollow death weak feeling and gives me a nice feeling of well being and natural energy. Ingredients: zinc carnosine, l-glutamine, arabinogalactans, DGL, aloe vera leaf extract, N-acetyl glucosamine, slippery elm bark, marshmallow root, stevia leaf extract, various natural fruit flavors, beet powder.

Could it be the L-glutamine?

Just a guess Caledonia, but it looks like most of those ingredients, are helpful for healing the gut, especially zinc-carnosine, glutamine, N-a-g and aloe. Which might result in helping several things: immune function, digestion, malabsorption, neurotransmitter function...etc.

???

 

[dannybex]

I don't have the exact same issues as you, but I didn't start healing until I came to complete halt, and even then it was about two years before I noticed any real positive changes. Fortunately it's an accelerating process. I wouldn't expect your body to be any different after such a long time - healing won't be fast, and it can't happen until you are able to stop and let it happen, no matter what treatment you throw at it. If you are now totally disabled then at last you have the excuse you need to simply stop.

I agree. It's scary to "stop", very scary. But that often leads to beginning of healing.

 

[Sing]

Oh, what a lot of trouble I am hearing! To The Moon Is Blue, there was some great advice I first heard in a Fibro Support Group run by a doctor with Fibro. She spoke about "perpetuating factors", and that the number one is sleep. Getting enough good quality sleep is the first thing to treat. If herbs or Benedryl or Melatonin or Tylenol, etc. do it, then use those, but otherwise go to the prescription drugs. There are so many with different properties. Long acting, short acting, for problems initiating sleep, or sustaining it, or for deep sleep, etc. Sleep is the hinge that everything swings upon.

I have heard about and experienced two periods a month. This is due to the lack of one of the female hormones. I think it is estrogen. I apologize for my poor memory, now being considerably past menopause.

You may be able to get some testing ordered just by calling up those doctors offices, since you already discussed it. The saliva test from DiagnosTechs (I think) could be sent to your home but a doctor has to order it. Other tests you could just go directly to the lab for, if one of those doctors will call something in.

If you started getting decent sleep with the help of some form of medication that works reliably--not hit or miss--you'd be in better shape to address your other needs. Sleep is First!