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cwbullet

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There is a difference between a GP and an FP.
 

modeltrains

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ME/CFS I had back in the early '90s and many people also didn't believe it to be a real problem. That was a constant theme from anyone I met that also had it.
Have had a few doctors literally say they "didn't believe in that"
"Believe in"?? Excuse me, but if I wanted to talk about religion wouldn't I be seeing a Priest instead of YOU???
Dad was one of USN's first medical retirements with CFS/ME (also written as ME/CFS) and fibro, and I think the actual literal first, in 1985 or so and still runs in to that.
Then about 20 years later the same things put an end to my working days.
In between those events MS finally put an end to his 16 years younger sister's nursing career.
Something is going on in this genetic line.
After years of trying this that and the other thing (although I will admit I've not yet tried juicing yoga instructors) neither Dad nor I have been able to ditch the CFS/ME and it has gotten worse faster in me than it did in him.

It has been interesting in a sad way to see people having covid post viral syndrome which looks a whole lot like CFS/ME; maybe now courtesy of covid there are enough dead bodies it will get widespread serious attention?
 

Bill S

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I had a similar situation back in 2004, when I got Lyme Disease. I had the "standard treatment", still felt awful, got the doc to extend it, still felt bad. He basically said I don't know what to do with you, good luck. Spent the next 2 years sick and going from doc to doc trying to get some help, one of them actually had the nerve to tell me that I had "post-Lyme syndrome" and maybe I ought to talk to a shrink. I fired him on the spot.

Finally found a doc worth a damn, got some better testing and gee, still had Lyme. It was a long and miserable road to "recovery", and I still have residual damage to my immune system and developed what might be a case of MCAS (Mast Cell Activation Syndrome), which gives me food allergies. I can't eat about 75+% of my former diet, which is really discouraging.

All of this is to illustrate that I didn't fit into the existing disease/treatment paradigm, and that most docs weren't willing to even consider the idea that their standard treatment was flawed and that I could possibly still be sick. It literally took on some of the aspects of a religion - our treatment is great, if you are still "sick", you must be crazy, there's no possibility we might be wrong or that our treatment sucks.

I recall doing a ton of research during that timeframe looking for a doc who could help me. It didn't help that some of the most knowledgeable docs were either afraid to treat more Lyme patients or went underground because of the political aspect of Lyme Disease and state medical boards were persecuting docs who dared to treat beyond "standard treatment". They were losing their licenses because they dared to use antibiotics in unauthorized ways (long term, different doses, etc).
 
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Alan15578

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I had a similar situation back in 2004, when I got Lyme Disease. I had the "standard treatment", still felt awful, got the doc to extend it, still felt bad. He basically said I don't know what to do with you, good luck. Spent the next 2 years sick and going from doc to doc trying to get some help, one of them actually had the nerve to tell me that I had "post-Lyme syndrome" and maybe I ought to talk to a shrink. I fired him on the spot.

Finally found a doc worth a damn, got some better testing and gee, still had Lyme. It was a long and miserable road to "recovery", and I still have residual damage to my immune system and developed what might be a case of MCAS (Mast Cell Activation Syndrome), which gives me food allergies. I can't eat about 75+% of my former diet, which is really discouraging.

All of this is to illustrate that I didn't fit into the existing disease/treatment paradigm, and that most docs weren't willing to even consider the idea that their standard treatment was flawed and that I could possibly still be sick. It literally took on some of the aspects of a religion - our treatment is great, if you are still "sick", you must be crazy, there's no possibility we might be wrong or that our treatment sucks.

I recall doing a ton of research during that timeframe looking for a doc who could help me. It didn't help that some of the most knowledgeable docs were either afraid to treat more Lyme patients or went underground because of the political aspect of Lyme Disease and state medical boards were persecuting docs who dared to treat beyond "standard treatment". They were losing their licenses because they dared to use antibiotics in unauthorized ways (long term, different doses, etc).
A more relevant disease. Did you develop any immunity to Lyme disease? Are you safe to venture into the woods in search of your rockets?
 

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Alan, no as far as I know, there is no lasting immunity to Lyme Disease. People who get it more than once seem to have worse outcomes. It certainly seems to cause all kinds of immune related issues. As an example, my white counts have never recovered to pre-Lyme levels (used to be in the 7-8 range, now more typical is 3.5-4.5), and my platelet levels are stuck in the mid-high-100s (pre-Lyme levels were 350+). My doc thought that I still was producing close to normal amounts of white cells, but now they seem to congregate in the tissues more, especially around the initial infection site, where I can to this day see a more reddish blotchy area there. There might be a Lyme infection going on still, but we can't detect it, or it could just be more of the immune system staying in hyper-alert mode and thinking there is still an active infection. No way to be sure either way.

I never had any food allergies pre-Lyme, but now my immune system gets easily freaked out, and it over-reacts to common foods, etc. Symtoms seem consistent with MCAS, but we haven't done the testing to confirm it (difficult, painful, expensive) - I have to take lots of antihistamines and use Benadryl when I get a reaction. Treatment for MCAS is basically antihistamines and some other drug, not the most effective to be sure. Not the greatest place to be in.

When I go to do rockets, hike, anywhere I might get into high grass etc, I use Repel (red can, has Picardin in it), which seems to work really well. Not as toxic as Deet, though it does seem to confuse the bees from time to time as it smells like a flower, etc. :)
 

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Lyme Disease is a completely different bear. It is from a bacterium.
 

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I had a similar situation back in 2004, when I got Lyme Disease. I had the "standard treatment", still felt awful, got the doc to extend it, still felt bad. He basically said I don't know what to do with you, good luck. Spent the next 2 years sick and going from doc to doc trying to get some help, one of them actually had the nerve to tell me that I had "post-Lyme syndrome" and maybe I ought to talk to a shrink. I fired him on the spot.

Finally found a doc worth a damn, got some better testing and gee, still had Lyme. It was a long and miserable road to "recovery", and I still have residual damage to my immune system and developed what might be a case of MCAS (Mast Cell Activation Syndrome), which gives me food allergies. I can't eat about 75+% of my former diet, which is really discouraging.

All of this is to illustrate that I didn't fit into the existing disease/treatment paradigm, and that most docs weren't willing to even consider the idea that their standard treatment was flawed and that I could possibly still be sick. It literally took on some of the aspects of a religion - our treatment is great, if you are still "sick", you must be crazy, there's no possibility we might be wrong or that our treatment sucks.

I recall doing a ton of research during that timeframe looking for a doc who could help me. It didn't help that some of the most knowledgeable docs were either afraid to treat more Lyme patients or went underground because of the political aspect of Lyme Disease and state medical boards were persecuting docs who dared to treat beyond "standard treatment". They were losing their licenses because they dared to use antibiotics in unauthorized ways (long term, different doses, etc).
As someone who enjoys the outdoors I hope to not get lyme disease!

Here is a peer reviewed study that found: "alcohol extracted based Stevia agents (A, B, C) were the most effective against the Borrelia persisters" "results demonstrated that Stevia had significant effect in eliminating B. burgdorferi spirochetes and persisters. "

 

Bill S

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Lyme Disease is a completely different bear. It is from a bacterium.
True enough, but the reluctance to try new things and think outside of the box on the part of the medical establisment is the same, it seems to me.
 

Bill S

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As someone who enjoys the outdoors I hope to not get lyme disease!

Here is a peer reviewed study that found: "alcohol extracted based Stevia agents (A, B, C) were the most effective against the Borrelia persisters" "results demonstrated that Stevia had significant effect in eliminating B. burgdorferi spirochetes and persisters. "

Wow, that is very interesting indeed. I use stevia drops, but from looking at the article, it looks like extract of the whole leaf may be more effective. I'm going to have to follow up on that to see if they did further studies on it.
 

cwbullet

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Wow, that is very interesting indeed. I use stevia drops, but from looking at the article, it looks like extract of the whole leaf may be more effective. I'm going to have to follow up on that to see if they did further studies on it.
It is interesting. Non-traditional treatments interest me. It concerns me that we have no heard much about this in 5 years since it was published.
 

cwbullet

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Things like GPs that won't issue scripts for Oxycodone even though I have nine broken ribs and a smashed collarbone. It was against his "religion" of "painkillers are addictive so shouldn't be dispensed" so I ended up suffering until I could see my regular doctor and get the right medication. Acetaminophen would not cut it for my current situation.

ME/CFS I had back in the early '90s and many people also didn't believe it to be a real problem. That was a constant theme from anyone I met that also had it.
GPs are rare today. GPs are folks that on have internship education after medical school;. I would find a Family Medicine (FP) or Internal Medicine (IM), physician. If that is what you are seeing, that might be half of the problem. Calling an FP, IM, or pediatrician a GP is an insult and most will take it as such even if they do not call you out on it.

Either way, he is probably right in general. I am not so dogmatic, but if you still need them after 7-10 days, there is probably another problem.
 

cwbullet

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I posted a while back about asymptomatic spreading not being a large of a problem as we previously thought. New research is showing that viral spread plummets after 9 days of exposure. At about 5 days of symptoms, the viral shedding peaks and then drops dramatically. After 10 days of symptoms or post start of symptoms, viral shedding is essentially zero.


What do people test positive for months after testing positive is viral shedding is essentially zero? Your body can continue to produce viral RNA for weeks to months after the virus is no longer viable. The answer is in the test we perform. A PCR test is similar to the test we use to convict a murder based on micro samples of DNA found at a crime scene. It magnifies genetic material in the sample so even a micro amount comes up positive.
 

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Digging through the numbers - I am not sure what to think of the numbers in China. I have to assume they are not testing or they are falsifying numbers.
 

afadeev

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Digging through the numbers - I am not sure what to think of the numbers in China. I have to assume they are not testing or they are falsifying numbers.
China's numbers, and that of other countries with authoritarian regimes (Iran, Russia, etc), have stopped making sense sometime back in March.
No reason to suspect that they would change their reporting practices without a change in regime.
 
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cbwho

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I just reread that article. It nto nearly as dramatic as CNN portrayed. 41% of people who infect others have symptoms when they infect others. 59% are either Pre-symptomatic (35%) or asymptomatic (24%). That means that 24% are true asymptomatic spreaders that never develop symptoms. That is not what has been put out before. I have seen numbers in the 90% Which was blatantly false if this new data is correct. We are learning every day.
My personal theory is asymptomatic is pre-symptomatic but their immune system just crushes the virus before the viral load causes symptoms. I also suspect that everyone infected goes thru the pre symptomatic phase.

As for China, it is well known that the local govt lies about the temperature forecast so people use less AC. If they are deceitful about that, how can you trust them on anything?

Noticed that China is blaming new infections on frozen fish. I don't believe that, I suspect that's scapegoating.
 
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cwbullet

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China's numbers, and that of other countries with authoritarian regimes (Iran, Russia, etc), have stopped making sense sometime back in March.
No reason to suspect that they would change their reporting practices without a change in regime.
You probably correct.

My personal theory is asymptomatic is pre-symptomatic but their immune system just crushes the virus before the viral load causes symptoms. I also suspect that everyone infected goes thru the pre symptomatic phase.

As for China, it is well known that the local govt lies about the temperature forecast so people use less AC. If they are deceitful about that, how can you trust them on anything?

Noticed that China is blaming new infections on frozen fish. I don't believe that, I suspect that's scapegoating.
Typically those that are fighting the virus get symptoms as they fight it. This virus is so novel, it is hard to believe many are immune enough to crush it.
 

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I am from West Virginia. They have come up with a COVID map that is Green, Amber, or Red. My high school likely won that state championship after beat #2 in the state. The other two teams coming into the final were disqualified because the COVID rate was too high.
 

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I am from West Virginia. They have come up with a COVID map that is Green, Amber, or Red. My high school likely won that state championship after beat #2 in the state. The other two teams coming into the final were disqualified because the COVID rate was too high.
Sports numbers are going to be a bit skewed this year. I still hold the Ivy League record for High Hurdles (the Ivy League of High Schools in Southern California) which I set in 1981 in the league finals:). There’s a reason that record still stands. It’s because that was the first year they started the Ivy League, and more importantly the last, I think they called it Citrus Belt the next year. So anybody that won any competition that year can claim a standing League record! (I got smeared in the first round of the State Finals :()
 

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Sports numbers are going to be a bit skewed this year. I still hold the Ivy League record for High Hurdles (the Ivy League of High Schools in Southern California) which I set in 1981 in the league finals:). There’s a reason that record still stands. It’s because that was the first year they started the Ivy League, and more importantly the last, I think they called it Citrus Belt the next year. So anybody that won any competition that year can claim a standing League record! (I got smeared in the first round of the State Finals :()
Lucky you. My high school is one of the longest-lasting in my home state (since 1876). The records were too high and I was not that good. Played tight end and defensive end.

I feel bad for the teams because all three classes A, AA, and AAA were declared based on a forfeit (COVID Related).

 

ksaves2

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I had a similar situation back in 2004, when I got Lyme Disease. I had the "standard treatment", still felt awful, got the doc to extend it, still felt bad. He basically said I don't know what to do with you, good luck. Spent the next 2 years sick and going from doc to doc trying to get some help, one of them actually had the nerve to tell me that I had "post-Lyme syndrome" and maybe I ought to talk to a shrink. I fired him on the spot.

Finally found a doc worth a damn, got some better testing and gee, still had Lyme. It was a long and miserable road to "recovery", and I still have residual damage to my immune system and developed what might be a case of MCAS (Mast Cell Activation Syndrome), which gives me food allergies. I can't eat about 75+% of my former diet, which is really discouraging.

All of this is to illustrate that I didn't fit into the existing disease/treatment paradigm, and that most docs weren't willing to even consider the idea that their standard treatment was flawed and that I could possibly still be sick. It literally took on some of the aspects of a religion - our treatment is great, if you are still "sick", you must be crazy, there's no possibility we might be wrong or that our treatment sucks.

I recall doing a ton of research during that timeframe looking for a doc who could help me. It didn't help that some of the most knowledgeable docs were either afraid to treat more Lyme patients or went underground because of the political aspect of Lyme Disease and state medical boards were persecuting docs who dared to treat beyond "standard treatment". They were losing their licenses because they dared to use antibiotics in unauthorized ways (long term, different doses, etc).
As far as using antibiotics long term and losing one’s medical license over it is kind’a weird. Docs used tetracycline derivatives (I think doxycycline is the cheap drug of choice now) to treat teens with acne over long periods of time. Sometimes years. I myself took a lot of it for my condition until Accutane knocked it out completely. Docs can do off label treatment and most do it all the time. As long as no one complains to the respective department of professional regulation, there will be no repercussions. All in all though, I’m glad I retired at age 64.

Kurt
 

cwbullet

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I use off label treatments often. It is not a huge deal.
 

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In the UK, they are starting to treat COVID with VIT D. I had a VTC with a colleague on this topic who is in London. Never mind that there is very limited evidence to suggest it would work. The fact that many of those who get the worse results from infection have led them to try it.

Sounds like a good trial and VIT D is dirt cheap.
 

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We won't be far behind:


Thank you Operation Warp Speed!
 

modeltrains

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I had a similar situation back in 2004, when I got Lyme Disease.
That brings to mind several years ago when my county seat farm burg also a horse farmer Psychologist got Lyme disease;
" ... so is this how you feel ALL the time with ME/CFS and fibromyalgia?"
"Yeppers."
"How do you live like that?"
"I'm not entirely sure it counts as living."
"Oh my."
"Yeah."

My heart goes out to the people who are ending up with post-viral syndrome from COVID.
 

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Do you think there's anything to the recent study showing that mumps antibodies from the MMR vaccine may prevent COVID and/or reduce its effects?

 

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Do you think there's anything to the recent study showing that mumps antibodies from the MMR vaccine may prevent COVID and/or reduce its effects?
That is an interesting article. My gut says to remember that correlation does not equal causation. Anecdotally, I never had a positive Covid-19 test or symptoms despite my wife having it, I also recently was given an MMR booster when a Rubella titer was low at my annual physical.
 
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