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    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

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isocort supplement.

Messages
28
I used isocort the last three days and on the 4th day I have crashed and burned. Anyone else notice this when taking this product? I get this metallic taste in my mouth. It feels extremely terrible. I was at about a 7/10 now I'm at 1/10.
 

Dufresne

almost there...
Messages
1,039
Location
Laurentians, Quebec
According to Dr. Cheney adrenal CSF (glandular) is one of the worst things you can give an ME/CFS patient. I don't think this is due to any cortisol-like activity, but rather the effect this glandular has as a CSF (cell siganling factor) as it influences terrain. Cheney talks about a positive effect followed by a far more negative backlash. I thought maybe this might be due to the different tissues used in the whole glandular so I experimented with just the medulla (by Atrium). To my surprise this one was even worse.
 

adreno

PR activist
Messages
4,841
I developed bad POTS after about 6 weeks on adrenal extracts. I was feeling wonderful until then. It's 3 years ago, and I still haven't recovered.
 

perrier

Senior Member
Messages
1,254
Hi Folks: I am very interested in this topic. I have been taking Isocort thinking it was better to add it in and thus lower the Cortef dose. Also, I have been taking the CF support (made I think by Atrium but sold through Alternative Medicines, I believe. They also produce Anti Aging forumla. The fellow in that company, Lloyd, I believe his name is, suggests this for CFS. My doctor also suggested these frozen little vials.

Also, Teitelbaum suggested Adrenal Stress End. This is also a glandular.

Am I to conclude that better stay on cortef than adding in any of these??

I feel like quite a dunce here. I take what the drs. suggest, assuming they know what they are talking about.
Kind regards , Helene


According to Dr. Cheney adrenal CSF (glandular) is one of the worst things you can give an ME/CFS patient. I don't think this is due to any cortisol-like activity, but rather the effect this glandular has as a CSF (cell siganling factor) as it influences terrain. Cheney talks about a positive effect followed by a far more negative backlash. I thought maybe this might be due to the different tissues used in the whole glandular so I experimented with just the medulla (by Atrium). To my surprise this one was even worse.
 

Dufresne

almost there...
Messages
1,039
Location
Laurentians, Quebec
I developed bad POTS after about 6 weeks on adrenal extracts. I was feeling wonderful until then. It's 3 years ago, and I still haven't recovered.

I'm lucky to have not had to deal with POTS thus far in my illness. However while experimenting with the adrenal medulla glandular it was this symptom I believe I briefly developed: a horrible lightheadedness while standing. It didn't completely level me but it was enough to indicate I'd better stop with the glandular. It lasted a week or two. I think taking heart and brain glandulars immediately following the symptom's onset may have helped pull me out of it. They certainly helped with overall energy, and are worth a try by anyone with this disease.
 

heapsreal

iherb 10% discount code OPA989,
Messages
10,099
Location
australia (brisbane)
try dhea first, start really low like 5mg and slowly increase it if u think your adrenal hormones are low. more testing for infections and immune system dude. work on that, infections, immune system, hormones and general symptoms like sleep and pain etc, maybe depression like 5htp and acetyl tyrosine. do 1-2 things at a time and slowly add things so u can see how much its helping you.

cheers!!!
 
Messages
28
try dhea first, start really low like 5mg and slowly increase it if u think your adrenal hormones are low. more testing for infections and immune system dude. work on that, infections, immune system, hormones and general symptoms like sleep and pain etc, maybe depression like 5htp and acetyl tyrosine. do 1-2 things at a time and slowly add things so u can see how much its helping you.

cheers!!!

It is just crazy to me how taking a supplement has made me so terrible when I was feeling decent. I was taking lyricia and Vyvanse and I was doing much better. The vyvanse would help me for 3-4 hours and the lyrcia would hold my anxiety and soon as I added escort it made my body CRAZY and now it can not sop settle down. Makes me wonder if the adrenals might be my problem. Is lower my immune system from taking escort the problem? I never knew taking escort would take effect of lowing my immune system that fast.

that is my theory. It has to be something, right?

This is the reason why people abuse drugs, because suffers have no relief from anything.
 

adreno

PR activist
Messages
4,841
It is just crazy to me how taking a supplement has made me so terrible when I was feeling decent. I was taking lyricia and Vyvanse and I was doing much better. The vyvanse would help me for 3-4 hours and the lyrcia would hold my anxiety and soon as I added escort it made my body CRAZY and now it can not sop settle down. Makes me wonder if the adrenals might be my problem. Is lower my immune system from taking escort the problem? I never knew taking escort would take effect of lowing my immune system that fast.

that is my theory. It has to be something, right?

This is the reason why people abuse drugs, because suffers have no relief from anything.

Like I said, adrenal extracts fucked me up, too. I don't know why. TH2 shift, perhaps.
 

Dufresne

almost there...
Messages
1,039
Location
Laurentians, Quebec
I'm still extremlysick guys is there anything I can do?

Cheney is the only professional talking about the hazards of using adrenal extracts. He's developed a gauge to measure the effects on the heart, which he says is a good indicator for the entire terrain. I think POTS of this sort is a fairly mysterious entity; but seeing as you messed things up as Cheney predicted with his energetic measuring device, doesn't it make sense to use what he recommends to counter the effect?

I would call this the "poor man's Cheney protocol": wormwood (or artemisinin) instead of artesunate, magnesium (transdermal), and glandulars instead of CSF's. I noticed more benefit from this while on a very low carb/sugar diet.

Here is the cheapest sources of the corresponding glandulars to substitute for his CSF's:

http://www.betterhealthinternational.com/productDetails.asp?prodID=NC56440

http://www.betterhealthinternational.com/productDetails.asp?prodID=NC56450
 
Messages
28
Did that work better for you than this? Or should I just call him?

should I just try those two supplements you listed, provided a link with?
 

adreno

PR activist
Messages
4,841
Dufresne, your info on Cheney and adrenal extracts sounds interesting. Where did you find this information? Is there anywhere I can read more?

Obviously I am hesitant to try more glandulars, after the very negative reaction I had to adrenal glandulars.
 

Dufresne

almost there...
Messages
1,039
Location
Laurentians, Quebec
Dufresne, your info on Cheney and adrenal extracts sounds interesting. Where did you find this information? Is there anywhere I can read more?

Obviously I am hesitant to try more glandulars, after the very negative reaction I had to adrenal glandulars.

Hi Adreno,

Cheney gave a lecture back in April of 2009 in Fairfax, the DVD's of which were made available shortly thereafter. I'd offer to make you copies but I seem to have misplaced mine -urg! Here's a link to a summary of the talk.

http://www.prohealth.com/fibromyalgia/blog/boardDetail.cfm?id=1346629

According to Cheney's measurements adrenal CSF's are universally bad in PWC's; heart and brain are universally good; artesunate (glorified wormwood) is universally good, as are magnesium, xanax, opiates. But it's probably worth considering he also claims vitamin D and MB12 are universally bad, which obviously doesn't agree with a lot of personal experiences on our forum here, though it does with me.

Cheney doesn't state adrenal extracts leads to POTS, just that they should never be given to PWC's. That said I find it interesting we three have all had some experience with POTS immediately after taken them.
 

adreno

PR activist
Messages
4,841
Hi Adreno,

Cheney gave a lecture back in April of 2009 in Fairfax, the DVD's of which were made available shortly thereafter. I'd offer to make you copies but I seem to have misplaced mine -urg! Here's a link to a summary of the talk.

http://www.prohealth.com/fibromyalgia/blog/boardDetail.cfm?id=1346629

According to Cheney's measurements adrenal CSF's are universally bad in PWC's; heart and brain are universally good; artesunate (glorified wormwood) is universally good, as are magnesium, xanax, opiates. But it's probably worth considering he also claims vitamin D and MB12 are universally bad, which obviously doesn't agree with a lot of personal experiences on our forum here, though it does with me.

Cheney doesn't state adrenal extracts leads to POTS, just that they should never be given to PWC's. That said I find it interesting we three have all had some experience with POTS immediately after taken them.

Thanks. Yes, it is certainly interesting that we all had nearly the same experience. I know of least one person who developed dysautonomia from using hydrocortisone, so maybe it could be cortisol, and not CSF. I have since learned that cortisol causes a shift from Th1 towards Th2 cytokines, further worsening an imbalance already present in ME. I believe the "solution" lies in shifting the immune system back to normal function. Of course, this is much easier said than done. I am quite convinced that once the immune system dysregulation is taken care of, the HPA axis will correct itself.
 

Rand56

Senior Member
Messages
675
Location
Myrtle Beach, SC
Hi Adreno,

Cheney gave a lecture back in April of 2009 in Fairfax, the DVD's of which were made available shortly thereafter. I'd offer to make you copies but I seem to have misplaced mine -urg! Here's a link to a summary of the talk.

http://www.prohealth.com/fibromyalgia/blog/boardDetail.cfm?id=1346629

According to Cheney's measurements adrenal CSF's are universally bad in PWC's; heart and brain are universally good; artesunate (glorified wormwood) is universally good, as are magnesium, xanax, opiates. But it's probably worth considering he also claims vitamin D and MB12 are universally bad, which obviously doesn't agree with a lot of personal experiences on our forum here, though it does with me.

Cheney doesn't state adrenal extracts leads to POTS, just that they should never be given to PWC's. That said I find it interesting we three have all had some experience with POTS immediately after taken them.

Hi Dufresne

I just read the link you provided and I find it very interesting as far as it relates to my experiences over the past trying some supps that Cheney says are the bad ones to take. I guess it was about 4 years ago, I had a 24 hour saliva cortisol test done and it confirmed what I thought as being low cortisol. Tried the Isocort..intially felt better <probably placebo> but shortly thereafter started feeling worse. I stopped taking it. Tried some other adrenal extracts, same thing, they made me feel worse. Ditched those. Took D-Ribose, and although I can't exactly remember if it made me feel worse <should have kept a symptom log>, at best it did nothing for me. Same goes for CoQ-10 that I've tried.

Is anyone else other than Dufresne going to try the heart and brain glandular and the wormwood? I'm very tempted to atleast give them a trial.
 

Rand56

Senior Member
Messages
675
Location
Myrtle Beach, SC
try dhea first, start really low like 5mg and slowly increase it if u think your adrenal hormones are low. more testing for infections and immune system dude. work on that, infections, immune system, hormones and general symptoms like sleep and pain etc, maybe depression like 5htp and acetyl tyrosine. do 1-2 things at a time and slowly add things so u can see how much its helping you.

cheers!!!


hi Heaps

I wanted to ask you this because you seem pretty knowledgeable about DHEA because I have noticed you have mentioned it before in a number of posts. Everytime I have tried it in the past...and I've tried it a few different times thinking it might be just a particular brand, everyone of them gave me itching symptoms, enough of a pain in the azz to not want to tolerate taking them anymore. Do you know what might be up with this and why I get this type of reaction?
 

Rand56

Senior Member
Messages
675
Location
Myrtle Beach, SC
I'm lucky to have not had to deal with POTS thus far in my illness. However while experimenting with the adrenal medulla glandular it was this symptom I believe I briefly developed: a horrible lightheadedness while standing. It didn't completely level me but it was enough to indicate I'd better stop with the glandular. It lasted a week or two. I think taking heart and brain glandulars immediately following the symptom's onset may have helped pull me out of it. They certainly helped with overall energy, and are worth a try by anyone with this disease.

hi Dufresne

It's great they helped you with giving you more energy. I'm very tempted to try this. If I may ask, were you taking both the heart and brain glandulars together? If so, what was your dosage and how long before you started seeing some positive effects? Were you also taking the Wormwood along with it?
 

Dufresne

almost there...
Messages
1,039
Location
Laurentians, Quebec
Hi Rand,

I've never taken the wormwood and glandulars together. Simply because I discovered them at different times and have since gone on to develop sensitivities to all herbs and drugs. Everything I take will have an effect the first time I dose, but then will not work again until I've desensitized to it with two months of abstinence. Cheney claims the peptides in CSF's are too small to be recognized by the immune system, but I have to argue with this. Fortunately the effect of glandulars is somewhat sustained, so I'm now taking a dose of bovine heart and brain once every two months, and alternating in porcine heart mid-interval. This is the best I can do with these for the moment. I've heard of ovine glandulars and, of course, Cheney's bison heart, but I haven't managed to access these. If anyone has a line on them I'd appreciate that information very much. I'm also thinking there might be some way to turn glandulars into a homeopathic remedy that could be used daily but I've no idea how to do this.

My experience is these therapies work in a matter of hours, but I think I'm fairly unique here. I get the impression most folks who try them don't derive immediate results. I'm not sure why this is. However, seeing as you very quickly detect things like MB12, CoQ10, vitamin D and the like to be negative (as I do), perhaps then you will have a similar, yet positive experience with these.

Good luck and let us know how it goes.