Another "CFS"er

mas

Member
Joined
Feb 12, 2014
Messages
148
Hello All-

I have been reading the forum for quite a while.

Here is a brief profile:
61 years old
diagnosed "CFS/FM 9 years ago (had to quit work )

My symptoms were like hitting a brick wall and were not alleviated by any allopathic medical treatments such as Neurontin, sleeping pills, pain meds, etc…

Disabling Problems:
Pots (adrenageric. Tachycardia and bradycardia. Both high and low blood pressure. Hyperventilation.
Weakness & trembling, pre-syncope
Brain Fog
Sinusitis
Fibro Pain
Freezing hands & feet (take hours to warm up) I was astounded at how warm my husband's feet are
Thyroid tests NORMAL
Many others

I suspect small fiber neuropathy and perhaps mast cell activation is involved.

I discovered Ray Peat's work a few years ago, and I started integrating as many of his principles as I could by using the dietary approach for a little over a year. I started Life Extension pregnenolone 50 mgs.

Should I try try progesterone or should I just go for the thyroid? I've read the threads discussing the different brands of thyroid, but any personal experiences would help enormously.

Best to all,
Megin
 

Ben

Member
Joined
Dec 13, 2013
Messages
497
Blood tests don't always show a thyroid dysfunction. My result was normal, but then I felt better when I started taking a lot more thyroid. Have you gotten your cholesterol levels checked? If they are high, then you will probably have no problem adjusting to a thyroid supplement. To increase them, increase your sugar intake. It sounds like you have a problem with excessive stress hormone because you have cold hands and feet anyway, and more food consumption will help this. Progesterone will increase thyroid function itself, so I think it's better to try it first.
 

SQu

Member
Joined
Jan 3, 2014
Messages
1,288
Hi megin
Did you low carb before? That's how I got the stress hormone problems and also cfs and constant fm aching. I can't answer you on thyroid as I have the same questions and am about to start it myself but thought I'd mention that for me the best thing so far has been strengthening myself through diet .especially useful have been ice cream milk liver and (when it agrees with you and made with full milk and sugar,) coffee. Aspirin too but take care. No more of that round the clock burning aching though. Best of luck!
 

DesertRat

Member
Joined
Mar 10, 2014
Messages
116
I also have ME-CFS diagnosis. POTS used to be terrible. Now it is gone. What helped me was mold avoidance. It still comes on if I get an exposure to the same combination of mycotoxins (residue in things in my storage unit) and has hit me from going into buildings with mold. Otherwise, after 13 years of moderate POTS, and 5 years of mild POTS, I can now stand for as long as I want and my blood pressure stays normal. I should add that I also cleared up chronic sinusitis with Ampo B nasal spray, neti pot, and avoidance.
 

Blossom

Moderator
Joined
Nov 23, 2013
Messages
8,500
I too was told I had CFS but I can tell you now that I don't. I think I had many issues going on that 'modern medicine' had no idea what to do with. It seemed easier to give me that diagnosis,pat me on the back,hand me some antidepressants and collect my money as they showed me to the door. Most of my chronic fatigue resolved when I went gluten free but I didn't start to really get well until I found Peat. It honestly is just varying degrees of impaired cellular metabolism imo. You've found the only real treatment for repairing impaired cellular metabolism/respiration in Peat's work. I have consistently seen improvement in 6 months of making changes based on his writings and interviews. You don't have to live with CFS forever like you may have been lead to believe. Things we often think of as incurable do go away when our cells begin to function optimally. Everyday is a new positive change for me since starting this approach. Now if I have a little set back it is brief, I learn from it and move on, it no longer takes me out of life for extended periods of time. I just wanted to share that since I had lived for over a decade believing I had CFS and I am perfectly well now.
 

mas

Member
Thread starter
Joined
Feb 12, 2014
Messages
148
Thanks Desert Rat and Blossom for your replies.

Desert Rat- did you have a tilt table test? Horrible. People's hearts actually stop when up and tilted.

When I was becoming disabled 9 years ago it started with my heart going in funny rhythms all over the place. Doctors tested my heart and said it was normal and they Knew NOTHING ABOUT POTS. POTS is indescribable and as close to living in hell as you can get. My heart was beating out of my chest, I was sweating, shivering, near passing out, constant fugue state of migraine, brain fog, weak, fibromyalgia pain from hell…then I was on 5 drugs and it didn't work out well.

Any treatment that the medical system has for POTS is largely ineffective. And the doctors do not understand the physiology of why the heart goes into tachycardia so they are told by the medical system to give the patients beta blockers. This medicine almost killed me and beta blockers in the long run cause more heart failure.

A well known CFS doctor tested all his patients with echocardiograms SPECIFIALLY FOR DYASTOLIC DYSFUNCTION and discovered that NEARLY ALL OF HIS PATIENTS HAVE DYASTOLIC DYSFUNCTION (heart doesn't fill well and it beats fast to compensate for this). Most cardiologists do not routinely look for this as they are only concerned with ejection fraction of the heart. It is ridiculous that the medical system doesn't look for this heart filling problem and they claim that it is no big deal because they don't have any drugs to treat it. More designed malevolence.

I went down a lot of blind alleys and I finally discovered Peat. The medical system as usual has a lot of half baked theories as to POTS, but RP has the physiological explanation:

From: Articles, Audio,Video & Advice
Heart & Hormones May 2013 (Thanks Charlie!)

Heart failure is described as "diastolic failure" when the muscle isn't able to fully relax. In an early stage, this is just a waterlogged (Iseri, et al., 1952), fatigued condition, but when continued, the metabolic changes lead to fibrosis and even to calcification of the heart muscle.

Some problems that become very common by middle age are "palpitations," orthostatic hypotension, orthostatic tachycardia, and varicose veins. The negative inotropic effect of estrogen in the heart has a parallel in the smooth muscle of veins, in which the muscles are weakened, and their distensibility increased, when estrogen isn't sufficiently opposed by progesterone. This allows the veins in the lower part of the body to be distended abnormally when standing, reducing the amount of blood returning to the heart, so that the volume pumped with each stroke is small, requiring faster beating. The reduced blood volume reaching the brain can cause fainting. When it becomes chronic, it can lead to the progressive distortion of the veins. An excess of estrogen is associated with varicose veins in men, as well as women. (Raj, 2006; Ciardullo, et al., 2000; Kendler, et al., 2009; Asciutto, et al., 2010; Raffetto, et al., 2010).

The simplicity of things such as supplementing thyroid, progesterone, and sugar, avoiding an excess of phosphate in relation to calcium, and avoiding polyunsaturated fats, makes it possible for people to take action themselves, without having to depend on the medical system.


I have improved slowly by going on a Peat diet and now going on 5 months pregnenolone- improvements but I am anxiously waiting for my Protest-e to try to reduce my estrogen and Nutripak.

I wished I had this information when I was tanking 10 years ago. But I will do all I can today and RP says it's never to late to improve!
 
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