Too many, too similar

Not dead yet!

Well-Known Member
I want to extend a thanks for indulging my "rant" sometimes I get an insight and right on the tail of it is a frustration, or a repeat frustration I've seen before. If I go on like this I"m going to traumatize myself. :( I think you're very kind to help me work these things through by hearing me out.

I'm going to make a solid effort to save up my energy for a trip to an IV clinic and/or N or S of me for some solid medical help of the functional medicine kind.

My blood type is O-, but my question is, are people divided into 50/50 +/-? Because if so I"m not sure what it proves. What's the proportion in the general pop? It's interesting.

Dr. Horowitz is definitely on my radar. My temporary plan is:

1. Recover a bit with high dose Vitamin C IV (available at a nearby city).
2. Decide if I'm going to Miami for parathyroid testing or
3. Dr. Horowitz or a similar doctor,
4. Both
5. Head out to Oregon maybe permanently but definitely my best bet for CFS treatment without leaving the USA.
6. If still not well, research a few places in Germany or Norway, another possibly permanent move. I have family in Germany.

Sometimes I think I have to have the energy to be well enough to seek help.
 

Merida

Well-Known Member
Wow. Go get 'em !!! I love your rants.

Ha! You are O neg!!!! The Universal donor. I am A neg. as is my son and was my Mom - all symptomatic. The Basques have the highest rate - at about 35 per cent. The Celtic groups are next, but don't know figures. The early Celts passed thru the Pyrenees area of the Basques. Basque festivals include men in kilts and bag pipes! The Basque language is not an Indo European language. In fact, there is no known language group that is connected to Basque language. So where did they come from?

So the world rate of Rh neg is about 15 percent, but certain ethnic groups have very low rates - Chinese maybe 1 or 2 percent, sub- Sahara Africa about the same. So, it was interesting that in my large support group over 13 years we had about a total of 6 or 7 ethnic Asian/ Black Americans. We had a much bigger Hispanic attendance. ( had hoped to get a desperately needed Spanish language group going).

I have thought and thought about this Rh neg phenomenon. The 'theme' in ALL of Nature is to " maximize reproductive potential." But what about human female Rh negs before RhoGam???? If you married an Rh. positive guy you might be able to gave 1 successful Rh pos. pregnancy. But the female Rh negs. would then likely build antibodies and kill Rh positive fetuses outright. This is absolutely crazy!!!! And goes against the most important tenet in Nature - maximize reproductive potential.

Whew. Sorry to go on so long. So glad you have a plan. Please help all of us learn along the way and keep sharing. I just had my parathyroid tested - is okay, but sometimes I have slightly high Calcium. I found a Naturopath who did all kinds of tests. Payed out of pocket, but they seem to have deals with labs for cash payers. He is the one that offered the Borrelia test from Lab Corp. Positive. geez. I was totally shocked.
 

Not dead yet!

Well-Known Member
Wow. Go get 'em !!! I love your rants.

Ha! You are O neg!!!! The Universal donor. I am A neg. as is my son and was my Mom - all symptomatic. The Basques have the highest rate - at about 35 per cent. The Celtic groups are next, but don't know figures. The early Celts passed thru the Pyrenees area of the Basques. Basque festivals include men in kilts and bag pipes! The Basque language is not an Indo European language. In fact, there is no known language group that is connected to Basque language. So where did they come from?

So the world rate of Rh neg is about 15 percent, but certain ethnic groups have very low rates - Chinese maybe 1 or 2 percent, sub- Sahara Africa about the same. So, it was interesting that in my large support group over 13 years we had about a total of 6 or 7 ethnic Asian/ Black Americans. We had a much bigger Hispanic attendance. ( had hoped to get a desperately needed Spanish language group going).

I have thought and thought about this Rh neg phenomenon. The 'theme' in ALL of Nature is to " maximize reproductive potential." But what about human female Rh negs before RhoGam???? If you married an Rh. positive guy you might be able to gave 1 successful Rh pos. pregnancy. But the female Rh negs. would then likely build antibodies and kill Rh positive fetuses outright. This is absolutely crazy!!!! And goes against the most important tenet in Nature - maximize reproductive potential.

Whew. Sorry to go on so long. So glad you have a plan. Please help all of us learn along the way and keep sharing. I just had my parathyroid tested - is okay, but sometimes I have slightly high Calcium. I found a Naturopath who did all kinds of tests. Payed out of pocket, but they seem to have deals with labs for cash payers. He is the one that offered the Borrelia test from Lab Corp. Positive. geez. I was totally shocked.
My first reaction was OMG I'm so sorry your Borellia is +, then I thought, no wait, at least it's an answer. (See how mad this illness is? People can't even react normally to stuff, lol.)

That's very interesting about the RH- then. I knew a fellow who was a scholar of Celtic studies. His "popular" books are listed in his wikipedia page: https://en.wikipedia.org/wiki/Alexei_Kondratiev I took it very hard wen he died because it followed closely the death or his partner and they didn't live long enough to be married, although they'd been devoted to each other as long as I knew them. (In case that's nebulous, they were gay.)

Anyway, he told me the "Celts" and the Kelts (as described by the Greeks) ARE the same people, just two different time periods. And he said the oldest Celtic digs are in Eastern Europe, and that someday when things calm down out there, we'll find even more about it. I'd never considered myself Celtic before. But I have to admit my mom resembled Bodicea in every personality trait, lol. Women over there either learn to fight back or spend a lot of time crying, even today.

What is "Celtic" is not limited to Ireland in my mind. Depends on how old the time period. They moved around like anyone else. Wasn't there a rumor of a group of Druids in Estonia who'd never heard of Christianity bc they were so isolated? Things like that amuse me greatly. Imagine saying to them... "No wait, don't change a thing until we can document this!! " LOL It's probably apocryphal though.
 

Merida

Well-Known Member
Wow. The Celts. Didn't know about early Celts. Gee, must look at globe for Estonia. Now, also interesting, I bet there is a high rate of CFS/FM/ etc in red-haired people. I remember from interstitial cystitis conference in 1980s - lots of red hair in audience and researchers commented on that.

And the Borrelia - well I was sick before the tick bite - had the injury in 1998, tick bite in 2010. But there are new, important symptoms. I just don't know. Treatment is brutal.

Druids. Hmmmm. Yes, wonder where they came from. My intuitive side whispers to me, " The long distant past is important. Understanding it will help unlock the mystery of the present." Hmmm. Like you (?) I have one leg in science ( with a B.Sc.in biology, plus part of M.Sc) and one in a metaphysical world that defies the scientific method?
 

Not dead yet!

Well-Known Member
Wow. The Celts. Didn't know about early Celts. Gee, must look at globe for Estonia. Now, also interesting, I bet there is a high rate of CFS/FM/ etc in red-haired people. I remember from interstitial cystitis conference in 1980s - lots of red hair in audience and researchers commented on that.

And the Borrelia - well I was sick before the tick bite - had the injury in 1998, tick bite in 2010. But there are new, important symptoms. I just don't know. Treatment is brutal.

Druids. Hmmmm. Yes, wonder where they came from. My intuitive side whispers to me, " The long distant past is important. Understanding it will help unlock the mystery of the present." Hmmm. Like you (?) I have one leg in science ( with a B.Sc.in biology, plus part of M.Sc) and one in a metaphysical world that defies the scientific method?

If you possibly can, stick with it. I had to eradicate h pylorii once, and I had to take two antinausea pills before each dose, and keep up religiously with zegerid JUST so i could take the meds without heaving it all up. Even so I had to lie down while the room spun for an hour after each dose. But when it was gone, I had two years of blissful freedom from the constant urge to eat. I wish we could repeat that process, even though it was awful. I know it is back among all the other bugs. I feel like I used to, a bit raw after each meal, with a reflexive desire to eat another something to "settle" it. But that results in sour stomach.

That too has proven to me that there is more of physical than emotional about eating, but the ignorant want to blame the sick to save them from feeling helpless.

The only really well documented thing i know about redheads is that they don't respond to pain medicine as others do, and their pain threshold is much lower than most people. Given what I know about the equation pain =grumpy, I think it explains the "firey" personality.
 

Zapped

Well-Known Member
@Lissa
Yes! Who knows what new info could come from mapping. Maps would need to follow the birthplace and migration, travel, and the point where symptoms began. Not a problem for computers.
What happened in Incline Village, were one of the first outbreaks occurred? A careful history of the area may help. Perhaps Cheney or Peterson did this informally?
That area, Lake Tahoe was the source (?) of my CFS, in late 1985, when I spent a week there before driving on to San Francisco, (then later flew home to Atlanta).

CFS didn’t manifest for 6-8 weeks, when symptoms began with the ‘never ending flu.’ I didn't connect the dots until much later though I progressively became more ill. This was right in the middle of the breakout of mystery illness being reported.

Another person, Erik Johnson, believed to be amongst the first of the PWCs was there as well (though I had no contact with him). He wrote a couple of books on the exact conditions he found to be causal, one with Lisa Petersen as co author. They were once available at Amazon.com in Kindle format.

FWIW, my experiences there did not coincide with his. He was outdoorsy and pointed out a specific old building as an exact source, as I recall. I was there mostly indoors at Bally’s
and the cascinos, though I did drive all around in the snow and spent a couple of days in Reno, while on the move (vacation).

You may still be able to get one of his books if you’re interested... .
 
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IrisRV

Well-Known Member
I feel like the problem there is that we are limited in getting any accurate headcounts with locations.
Indeed. Equally problematic is that what we have is often undiagnosed or misdiagnosed, so outbreaks are invisible. For example, I was part of a parent-child group with maybe 20-30 families. We met often (several times a week) and sometimes for hours at a time. We had an outbreak of Parvo B19. Nobody was affected (as far as we know) beyond having the rash.

However, 6-8 years later, mothers and children from that group started being diagnosed with Fibro, ME/CFS, OI, mild or atypical MS, and of course the plethora of "you're making it up" diagnoses. All with extreme fatigue, most with some neurological issues. The whole group is not affected, but a very disproportionate number of us have either those somewhat related diagnoses or undiagnosed symptoms similar to ME/CFS. We look very much like a cluster, but with multiple diagnoses we'll never be seen as one.

I'm not suggesting the Parvo was the cause or trigger, necessarily, but it's odd that as we aged, only those parents and children around at that time came down with these illnesses. There are none of these diagnoses in families that joined after that time or in children who were not born or were too young to be involved in the activities at that time.

Point being, it appears something significant happened at that time to us and maybe the larger community, but with multiple diagnoses and plenty of undiagnosed people, no one will ever report or investigate it as even a small outbreak.
 

Not dead yet!

Well-Known Member
Yeah with "real illness" you get an automatic headcount as moderate / severe cases are reported to the CDC and reports are officially made. The very laxity of the official record-keeping, as well as the vague definitions, and sabotage of the search for a cause, are all parts of the problem with our illness. So much time has been lost now, decades of history is just as missing as we are.
 

Not dead yet!

Well-Known Member
Wow. The Celts. Didn't know about early Celts. Gee, must look at globe for Estonia. Now, also interesting, I bet there is a high rate of CFS/FM/ etc in red-haired people. I remember from interstitial cystitis conference in 1980s - lots of red hair in audience and researchers commented on that.

And the Borrelia - well I was sick before the tick bite - had the injury in 1998, tick bite in 2010. But there are new, important symptoms. I just don't know. Treatment is brutal.

Druids. Hmmmm. Yes, wonder where they came from. My intuitive side whispers to me, " The long distant past is important. Understanding it will help unlock the mystery of the present." Hmmm. Like you (?) I have one leg in science ( with a B.Sc.in biology, plus part of M.Sc) and one in a metaphysical world that defies the scientific method?

I did want to add that although my hair went red every summer when I was young, I'd call mine "auburn" normally. And as I get older, it gets darker, so I artificially spray it with household peroxide to bring out the warmth so I don't look so severe. Paleness and ashy hair color add up to zombie. LOL I try to avoid that.
 

Merida

Well-Known Member
That area, Lake Tahoe was the source (?) of my CFS, in late 1985, when I spent a week there before driving on to San Francisco, (then later flew home to Atlanta).

CFS didn’t manifest for 6-8 weeks, when symptoms began with the ‘never ending flu.’ I didn't connect the dots until much later though I progressively became more ill. This was right in the middle of the breakout of mystery illness being reported.

Another person, Erik Johnson, believed to be amongst the first of the PWCs was there as well (though I had no contact with him). He wrote a couple of books on the exact conditions he found to be causal, one with Lisa Petersen as co author. They were once available at Amazon.com in Kindle format.

FWIW, my experiences there did not coincide with his. He was outdoorsy and pointed out a specific old building as an exact source, as I recall. I was there mostly indoors at Bally’s
and the cascinos, though I did drive all around in the snow and spent a couple of days in Reno, while on the move (vacation).

You may still be able to get one of his books if you’re interested... .
@Zapped
Fascinating account. I have thought and thought about this Lake Tahoe situation. Very strange. I have wondered more recently if there was some electromagnetic type phenomenon? Thinking of the illness that our diplomats in Cuba developed - with apparently permanent health issues. Do we have similarities?
 

Farmgirl

Well-Known Member
Indeed. Equally problematic is that what we have is often undiagnosed or misdiagnosed, so outbreaks are invisible. For example, I was part of a parent-child group with maybe 20-30 families. We met often (several times a week) and sometimes for hours at a time. We had an outbreak of Parvo B19. Nobody was affected (as far as we know) beyond having the rash.

However, 6-8 years later, mothers and children from that group started being diagnosed with Fibro, ME/CFS, OI, mild or atypical MS, and of course the plethora of "you're making it up" diagnoses. All with extreme fatigue, most with some neurological issues. The whole group is not affected, but a very disproportionate number of us have either those somewhat related diagnoses or undiagnosed symptoms similar to ME/CFS. We look very much like a cluster, but with multiple diagnoses we'll never be seen as one.

I'm not suggesting the Parvo was the cause or trigger, necessarily, but it's odd that as we aged, only those parents and children around at that time came down with these illnesses. There are none of these diagnoses in families that joined after that time or in children who were not born or were too young to be involved in the activities at that time.

Point being, it appears something significant happened at that time to us and maybe the larger community, but with multiple diagnoses and plenty of undiagnosed people, no one will ever report or investigate it as even a small outbreak.
@IrisRV That is interesting! I had a reaction to the Swine Flu vaccine in 1979 as a employee in the medical field. I have noticed that vaccines are labeled by their "lot"# ...is it possible that a group of people in the same location get a bad "lot" since most people received childhood vaccines??? Just something I have been wondering about instead of the "outbreak" theory that makes it seem as if it is like a flu bug going around.

During the Swine Flu vaccine issue in 1978 and 79, many died and many got Gulliane-Barre syndrome clearly associated with the shot.
 

Farmgirl

Well-Known Member
@Merida
Hi! I just wanted to say that I have a friend who had high calcium levels and it had something to do with Vitamin D . Her doctors put her on Vitamin D and the calcium levels came back down.
 

Not dead yet!

Well-Known Member
@Merida
Hi! I just wanted to say that I have a friend who had high calcium levels and it had something to do with Vitamin D . Her doctors put her on Vitamin D and the calcium levels came back down.

That combination can easily be parathyroid adenomas. Another undertreated condition that doesn't kill you but makes your life miserable.
 

Not dead yet!

Well-Known Member
I noticed a couple of things that I hadn't noticed before. First, a few years ago, I was living in another state, and medicine is very localized. Simple examples abound... one state, they give you silvadene cream if you so much as cut your finger, and in others, they treat that as if it was a top secret, and if you ask, they act like you've breached security. Medicine is odd that way.

So in another state, I constantly had doctors tell me I might have meningitis. But they never did anything, never tested for it, and never offered any help, so it never went anywhere.

Now I'm in a new state and they tell me I probably have FM or CFS, again, hard to get a full diagnosis, none exists really. After the FM statement, I went to a very careful and intelligent Rheumatologist who spent 3 hours talking to me and getting a full report on how I felt over my whole life. She says I don't have FM but OA, after blood tests. If I move again, that may be overturned.

It's enough to drive me crazy.

So I read up on CFS and attempt to stop my exercise routine because it's apparently "bad for me." After several months of that I don't notice any improvement in my condition so I may as well continue exercising and have the ups and downs rather than the continual downhill I was on.

And one day I wake up feeling a crick in my neck. I remember the doctors who said I had meningitis and I remember that there is such a thing as viral meningitis. I look it up:

http://www.meningitis.org/disease-info/types-causes/viral-meningitis

https://www.cdc.gov/meningitis/viral.html *note what they say here about non-polio enteroviruses? If that doesn't raise your eyebrows, you haven't been paying attention.

Another wonderful unprovable thing attributed to viruses that I can find with a blood test - and I've already tested positive for. And the common wisdom is that it needs no treatment. Ha. I recently took a short break from Valcyclovir and within 2 weeks the stiffness in my neck was so bad it sent me looking for why.

There is only one pattern I'm aware of in all of this. Modern medicine doesn't want to treat viruses. Any viruses. Tamiflu has never been prescribed or offered to me. Not once. Maybe if I lived in a city, it would be, but again with the local medicine phenomenon. We know humans are affected by many retroviruses but HAART use is restricted to AIDS patients. Even getting to that point for AIDS sufferers was a long hard battle. Technically my doctor is not supposed to be giving me Valcyclovir for CFS, and I'll probably have to convince him of its usefulness once the 6 month course is over. That fact gets me into the gray area of self-diagnosis and requesting treatment that isn't standard.

But I do wonder why I never heard of viral meningitis and CFS in the same resources. In fact, I see a lot of skepticism about the idea that a virus or several are causative in CFS. If viruses hijack our metabolism to reproduce and if retroviruses actually rewrite our DNA, then why aren't we fighting them? Why are patients left to make requests of doctors to get better? Why do we give different names to one illness, and each one has an online description that includes "most people don't need care"? Why do we demand that only ONE virus can be fought at a time? Maybe the issue is the fragmenting of research into fake categories.

After all you use a broad spectrum antibiotic nearly always. Why do we use such precision in fighting viruses?

I think the alphabet soup of CFS, ME, CFIDS, etc etc etc... just works to maintain these distinctions and hide the other illnesses that are similar. And I think that antiviral treatment should be taken much more seriously. In the current situation of separating MS, tick-borne disease, and Meningitis from the larger group of virus-caused disease, we're hamstringing the efforts to make drugs that, like antibiotics, are somewhat specific to the type of virus, but mostly they are broad spectrum.

I also think that the antibiotic resistance hysteria is feeding the feeling of futility in making such drugs, or developing such treatments. So I think there are too many similar illnesses that all fit, more or less, the picture of viral illness. And it's long past time for us to fight that with the correct medication, not palliative care.

Sorry to quote myself but I was going to continue this thought process so I didn't want it forgotten. Today's research internet rabbit-hole was about Myositis. Apparently there are many forms of this illness, and each subtype is called rare somehow, but also includes "we don't know much about it." A significant amount of links and resources about it I got from the Muscular Dystrophy website, they're related somehow but I don't have enough brain power today to go down that path also.

I'm mainly wondering what differences there are between the various forms of Myositis and ME/CFS because especially the infectious one sounds depressingly similar to my condition.

diagnosis of various muscle inflammatory diseases (source for some of the keyword searches I did)
http://jnnp.bmj.com/content/74/suppl_2/ii25

MMF was discovered in France in 1993 (note about 10 years after the AIDS epidemic)
http://www.who.int/vaccine_safety/committee/reports/october_1999/en/
Note that they say they don't recommend further research, even though they acknowledge that they are ignorant about it. Well then I guess my opinion is as good as theirs... I think we should study it more.

Another muscle pain and inflammation disease, Polymyalgia rheumatica
https://www.mayoclinic.org/diseases-conditions/polymyalgia-rheumatica/basics/treatment/con-20023162
Note it is also treated with corticosteriods among other things, but primarly like that

This word from what I can tell, means the malaise you feel when you have cancer, due to your immune system freaking out:
https://www.google.com/search?q=paraneoplastic&ie=utf-8&oe=utf-8

There are lots of places (WHO,etc) online that claim this is rare. Once again I'm tempted to scream whenever someone says "rare" at a disease they know almost nothing about. Often on the very same page they say "we don't know much about this illness."
https://www.mda.org/disease/polymyositis/signs-and-symptoms

In general I don't like how siloed we are in the medical system. Do we really need ONE pulmonolgy cender which doesn't talk to the neurology center, and doesn't talk to the gastroenterology center? Etc? Here's someone with the right idea, three specialist types in one place, and all of them seeing you at once:

https://www.hopkinsmyositis.org/myositis/
Note that this too, is treated with steroids. Hmm... I see a pattern here. Same treatment, roughly the same symptoms, and yet the medical system is treating these as if they're wildly different things.

I'm suspicious that maybe they're splitting hairs so finely becuase two illnesses can draw more research dollars than one.

Anyway, I'm going to make an appointment to see my doctor and we will discuss whether this is some kind of immune reaction to the EBV and could it be just treated like any chronic myositis? Maybe we can just do a test of the corticosteroids and if it helps, we can come up with a simple schedule for being on/off of them. Maybe I'll recover if my body stops tearing itself apart.

Am I grasping at straws? This seems like a simple principle to me.

I certianly have muscle weakness. I have fairly substantial muscles (I've been lifting weights on and off since I was 16 and it hasn't atrophied much), yet I struggle to stand up from a chair. Interestingly, if I could ignore the side effects, modafinil can make it so that I can spring right up from a chair or deep couch. It's amazing. I just wish I could tolerate that drug.
 

Zapped

Well-Known Member
We cynics of Medicine can fingertip and dig out the damnedness of coincidences relative to
controversy in treatments, or absence thereof... .

I did a year with a concierge group of doctors a couple of years ago to the tune of $1500.
I got the briefest of physicals and only saw this young doc 3 times.

In total, I educated him with some of my research and books, complimentary. He just filled my requests for rx’s and said ‘...they don’t teach this stuff in medical school... .

Oh, btw, they worked 8:30am - 4:30pm, with Friday’s off. That’s 28 hours a week, folks and for a bright young MD, 43. Don’t tell me these 40-somethings and older associates are much more than businessmen, and what a dollar mill they set up, each with 600 patients.

...Respect has to be earned... .
 

Not dead yet!

Well-Known Member
We cynics of Medicine can fingertip and dig out the damnedness of coincidences relative to
controversy in treatments, or absence thereof... .

I did a year with a concierge group of doctors a couple of years ago to the tune of $1500.
I got the briefest of physicals and only saw this young doc 3 times.

In total, I educated him with some of my research and books, complimentary. He just filled my requests for rx’s and said ‘...they don’t teach this stuff in medical school... .

Oh, btw, they worked 8:30am - 4:30pm, with Friday’s off. That’s 28 hours a week, folks and for a bright young MD, 43. Don’t tell me these 40-somethings and older associates are much more than businessmen, and what a dollar mill they set up, each with 600 patients.

...Respect has to be earned... .

Thanks I needed that. The fingertip thing was funny to me.

My doc is concierge too, and he's pretty nice about looking up rare stuff for me. He's an elderly fellow though. Maybe the older ones are better. He stayed in medicine because of the concierge system. He refused to see people for 15 minute visits. He says nothing can be done that way. He assumes a 30 minute visit, and asks that I alert him if it looks like we'll need more time to discuss things. He didn't even bat an eye about the Valtrex, it was SOP in his worldview. There are two doctors there, both elderly, not exactly similar but they both were up front about the benefits of keeping common viruses to a minimum. I have his cell number too. His real cell number. That speaks volumes as far as I am concerned.

It's so hard to find doctors like this. Who will troubleshoot with you. I was always taught that anytime someone rushes you, they are probably scamming you. I think the 15 minute thing is a sign of the scam. My best tip for finding the good ones? Look around the waiting room... any elderly people there? If not, leave. They have no patience for a chronic illness if they have no patience for the elderly.
 

Zapped

Well-Known Member
@NDYYet. Good point about elderly... . BTW, sometimes I feel I fall in that category. OTOH,
irrespective of birthdays passing quickly, it ain’t me who’s elderly, though I feel 80 sometimes when I’m not up to speed - it’s the other guy(gal), and I’m not telling age!:cool: I’ll just hobble
around until ‘they’ or I find a cure... .
 

Not dead yet!

Well-Known Member
@NDYYet. Good point about elderly... . BTW, sometimes I feel I fall in that category. OTOH,
irrespective of birthdays passing quickly, it ain’t me who’s elderly, though I feel 80 sometimes when I’m not up to speed - it’s the other guy(gal), and I’m not telling age!:cool: I’ll just hobble
around until ‘they’ or I find a cure... .

I think it's a good analogy for ME/CFS... prematurely aged and the immune system faulty, with some brain fog issues. BTW, my brain fog is way better, nearly gone. That's since I went from Armor thyroid to liothyronine (the pure active T3). I still have to keep reminding myself what time it is and likely to mistake 3 AM for 3 PM if I'm up too late and very tired. But my sleep schedule seems better too. Definitely an improvement.
 

Zapped

Well-Known Member
I think it's a good analogy for ME/CFS... prematurely aged and the immune system faulty, with some brain fog issues. BTW, my brain fog is way better, nearly gone. That's since I went from Armor thyroid to liothyronine (the pure active T3). I still have to keep reminding myself what time it is and likely to mistake 3 AM for 3 PM if I'm up too late and very tired. But my sleep schedule seems better too. Definitely an improvement.
Thanks for the Ref re Armor. I’ll check into it. I presume it’s for ‘pure CFS’ vs a thyroid condition? ‘You feel the results quickly or over time?
 

Not dead yet!

Well-Known Member
Thanks for the Ref re Armor. I’ll check into it. I presume it’s for ‘pure CFS’ vs a thyroid condition? ‘You feel the results quickly or over time?

Well what the doctor said was that they can test and see if your body just instantly deactivates T3 after making it. There are two forms of it, active/inactive. And my inactive was much higher than it should be. So no matter how much Armor I took, my body just said NIX and it was inactive, or my body said "hey this isn't human hormone" and protected itself too much. This way the T3 has a chance to circulate before it is destroyed. Technically it lasts only a short time, I'm still working out how to break up the pills and take over a day. I will probably settle on taking half in the morning, half at around 3pm. It's more of a hassle than the other ones, but I get limited help from those.

The amusing thing is, this form specifically states the positive effects in just regular pharmacy paperwork for the patient. It said for example... "increases oxygen utilization." Hmmmm... sounds like a good thing for CFS in general, or at least it's important to have a really good thyroid doctor who doesn't just test TSH and maybe T4. It's like they're doing you a favor and you're supposed to be worshipful and glad, but they're being really lazy about it.

I wonder if they would do that if it wasn't an official-looking 'guideline' they were reading, but if they knew it was the insurers manipulating them? I bet a lot of doctors would be shocked or in disbelief if they knew half the stuff we have found out about them. I don't blame the doctors, I feel sorry for anyone who goes through so much training just to learn they are a tool of corporate interests and not healers after all. It's sad. I don't get mad about it anymore. I get mad at the source. Doctors are as much a victim as we are. With the advent of the 15 minute, 1000-patients per doctor guidelines... they hardly have time to consider the finer points of their job. That's what I mean by "the scam." Keep everyone too busy to look at it rationally.

But yeah, I wish I'd just had the full tests and gotten the right med from the start. But I'm not likely to change this situation, I have no authority over how medicine is practiced. Doctors should unionize. "Freedom" as a practical part of daily life means nothing if you're going to just give up your individuality and choice to the interests of some corporation. Not to mention, your health.
 
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