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Old 06-07-2018, 12:45 PM
 
Location: Middle of the ocean
35,054 posts, read 22,070,641 times
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It doesn't appear that you would have RA at all.

When a patient presents with a history of Lyme disease and joint pain, it might be reasonable to assume that they're dealing with refractory Lyme arthritis. And in some cases, that's true. However, a new study(1) warns that systemic arthritis can also arise after Lyme disease, and that the Lyme history can confound the real diagnosis of an autoimmune disorder like rheumatoid arthritis or psoriatic arthritis.
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Old 06-07-2018, 02:46 PM
 
4,311 posts, read 1,433,894 times
Reputation: 3442
Quote:
Originally Posted by in_newengland View Post
If you ask me (and I don't care if nobody does, lol) all of those originate in the gut. Even fibromyalgia, they call it a metabolic disorder of some kind but no one knows. RA--so often is caused by food intolerances. Same with IBS. Change the diet and it can go away. MS, I don't know, but it could be.

I've known plenty of people with RA and they never had a neck injury but they turned out to have a food intolerance to something they were eating all the time. We won't figure it out here. If the researchers haven't figured it out yet, neither can we. All we can do is guess.
Yes nutrition can certainly be part of immune system problems. But physical trauma can also.

There are many things the researchers have not figured out. But if we have one of those things, we are motivated to experiment and possibly find our own answers. And it can't hurt to communicate about it.

I found things that help through trial and error and through reading. Never from MDs. Some of them told me I was imagining the pain, others told me it was because I was getting old (I was 30).
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Old 06-07-2018, 03:15 PM
 
Location: too far from the sea
21,427 posts, read 20,415,113 times
Reputation: 37551
Quote:
Originally Posted by Good4Nothin View Post
Yes nutrition can certainly be part of immune system problems. But physical trauma can also.

There are many things the researchers have not figured out. But if we have one of those things, we are motivated to experiment and possibly find our own answers. And it can't hurt to communicate about it.

I found things that help through trial and error and through reading. Never from MDs. Some of them told me I was imagining the pain, others told me it was because I was getting old (I was 30).
Yes, but as I have said before, it was a fibro specialist in Boston who cured me of fibromyalgia. He held group appointments and told everyone the same thing: 20 minutes of aerobic exercise every day. I was so weakened that I had to exercise in a physical therapy pool and the other days I did my exercises lying on the floor at home. But it did work.

My fibromyalgia did return though, several years later after becoming very sick and run down all winter. Ended up with the exact same aching after exertion. Makes you just want to sit perfectly still and do nothing.
This time I started the PT in a physical therapy pool again. I already knew that and I was starting to get better.

By co-incidence I found the true root of my illness this time though. I was looking for a sleep remedy and found a Japanese study that recommended a high dose of the amino acid L-Glycine. So I bought it and took it one night for sleep. It didn't help with sleep but the next afternoon I noticed I had no pain at all. I went for a short walk and surprisingly, developed absolutely no pain. There is something about amino acids--I wish I knew more. building blocks of protein and all that...what we learned in school...but I wish more was known about them. It is possible to be tested for amino acids--and I went and got tested for a few but no surprises, nothing helpful.

And...a little more googling and I learned why I was so deficient in L-Glycine in the first place! Long ago after my divorce, the dr had put me on an antidepressant (totally ineffective and I think it was the initial cause of the insomnia I still suffer from) but one of the side effects of that antidepressant (Elavil) is depletion of L-Glycine. My theory is that's what started all of this--and the straw that broke the camel's back was the strain of packing and moving many years later. Somehow that may have used up some more of the L-Glycine until it resulted in the muscle pain and weakness. Not that I really understand but I wish we had some place where we could report our stories and get some research done on it.

So that's another idea--go back and unravel what's been done to you in the past. Keep track of any medications, including supplements, you have ever taken. Look them up and see what they do. Many will deplete nutrients.
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Old 06-07-2018, 03:32 PM
Status: "Keep It SIMPLE!!" (set 5 days ago)
 
Location: Southern California
26,333 posts, read 9,876,092 times
Reputation: 17032
INE, I've read how sick some have been, I've never been sick with this FM dx. Could be my miracle type supp I had been taking already 5 yrs when I was hit with the emotional trauma. So many if's to this one. Some too deal with both FM/CFS, a friend struggles with CFS/ME but no FM dx, she claims to not have body pain to speak of.

Oh we seem to have two threads talking about the FM issues.
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Old 06-07-2018, 04:03 PM
 
7,141 posts, read 3,968,325 times
Reputation: 7949
Don't worry, there is vax coming for you and Lyme disease. Yes, I have known a woman with Lyme Disease. Terrified? I now live in a rural area of Pa. with a very high deer, and tick, population. You cannot FEEL when a tick is crawling on you? What are you NUMB? Hello, Mr. Tick. SWAT you are dead. This includes sitting INSIDE my own home, and for mosquitoes as well.

What is wrong with you people? You cannot feel insects crawling on you? Must be over-medicated to the point of being insensitive.
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Old 06-07-2018, 04:08 PM
 
Location: Middle of the ocean
35,054 posts, read 22,070,641 times
Reputation: 50495
Quote:
Originally Posted by Jo48 View Post
Don't worry, there is vax coming for you and Lyme disease. Yes, I have known a woman with Lyme Disease. Terrified? I now live in a rural area of Pa. with a very high deer, and tick, population. You cannot FEEL when a tick is crawling on you? What are you NUMB? Hello, Mr. Tick. SWAT you are dead. This includes sitting INSIDE my own home, and for mosquitoes as well.

What is wrong with you people? You cannot feel insects crawling on you? Must be over-medicated to the point of being insensitive.

Wow.
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Old 06-07-2018, 04:15 PM
 
Location: Central IL
16,362 posts, read 9,632,970 times
Reputation: 38733
Quote:
Originally Posted by Jo48 View Post
Don't worry, there is vax coming for you and Lyme disease. Yes, I have known a woman with Lyme Disease. Terrified? I now live in a rural area of Pa. with a very high deer, and tick, population. You cannot FEEL when a tick is crawling on you? What are you NUMB? Hello, Mr. Tick. SWAT you are dead. This includes sitting INSIDE my own home, and for mosquitoes as well.

What is wrong with you people? You cannot feel insects crawling on you? Must be over-medicated to the point of being insensitive.
So why are you terrified if it is so easy to feel ticks on your body? You should be all set - try camping this summer - just as a test.
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Old 06-07-2018, 04:22 PM
 
4,311 posts, read 1,433,894 times
Reputation: 3442
Quote:
Originally Posted by in_newengland View Post
Yes, but as I have said before, it was a fibro specialist in Boston who cured me of fibromyalgia. He held group appointments and told everyone the same thing: 20 minutes of aerobic exercise every day. I was so weakened that I had to exercise in a physical therapy pool and the other days I did my exercises lying on the floor at home. But it did work.

My fibromyalgia did return though, several years later after becoming very sick and run down all winter. Ended up with the exact same aching after exertion. Makes you just want to sit perfectly still and do nothing.
This time I started the PT in a physical therapy pool again. I already knew that and I was starting to get better.

By co-incidence I found the true root of my illness this time though. I was looking for a sleep remedy and found a Japanese study that recommended a high dose of the amino acid L-Glycine. So I bought it and took it one night for sleep. It didn't help with sleep but the next afternoon I noticed I had no pain at all. I went for a short walk and surprisingly, developed absolutely no pain. There is something about amino acids--I wish I knew more. building blocks of protein and all that...what we learned in school...but I wish more was known about them. It is possible to be tested for amino acids--and I went and got tested for a few but no surprises, nothing helpful.

And...a little more googling and I learned why I was so deficient in L-Glycine in the first place! Long ago after my divorce, the dr had put me on an antidepressant (totally ineffective and I think it was the initial cause of the insomnia I still suffer from) but one of the side effects of that antidepressant (Elavil) is depletion of L-Glycine. My theory is that's what started all of this--and the straw that broke the camel's back was the strain of packing and moving many years later. Somehow that may have used up some more of the L-Glycine until it resulted in the muscle pain and weakness. Not that I really understand but I wish we had some place where we could report our stories and get some research done on it.

So that's another idea--go back and unravel what's been done to you in the past. Keep track of any medications, including supplements, you have ever taken. Look them up and see what they do. Many will deplete nutrients.
It can take a lot of detective work. That's what we have to do. It took me a long time to get over fibromyalgia, but as soon as I started doing yoga every day (plus walking) it started to improve.

I got it before MDs were aware of it, so it was never diagnosed. I figured out what it was many years later. I was actually lucky an MD never diagnosed me, because all they do is prescribe drugs like Lyrica, which are terrible.
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Old 06-07-2018, 04:52 PM
 
Location: SW Florida
10,428 posts, read 7,671,493 times
Reputation: 16051
Quote:
Originally Posted by Jo48 View Post
Don't worry, there is vax coming for you and Lyme disease. Yes, I have known a woman with Lyme Disease. Terrified? I now live in a rural area of Pa. with a very high deer, and tick, population. You cannot FEEL when a tick is crawling on you? What are you NUMB? Hello, Mr. Tick. SWAT you are dead. This includes sitting INSIDE my own home, and for mosquitoes as well.

What is wrong with you people? You cannot feel insects crawling on you? Must be over-medicated to the point of being insensitive.
In all fairness, sometimes a tick can crawl onto your skin and attach itself without your being aware of it. And I don't think it's due to being zombified by "overmedication". I recall when we were kids, and visited relatives who lived in tick or chigger prone areas, my mother used to strip each of us down every night and check for both ticks and chiggers. We might have felt it in the event one of the little buggers crawled on us, but the nightly check made sure none of them stayed attached for any great length of time, or if it happened, she'd be aware of it and get rid of the thing.

One can also use insect repellent.
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Old 06-07-2018, 04:53 PM
 
Location: Georgia, USA
25,223 posts, read 30,079,605 times
Reputation: 31352
Quote:
Originally Posted by CarnivalGal View Post
As someone who has been through it, so much of that if simply not true. The only people who have died from the long-term antibiotics actually died from an infection cause by the port used for the delivery of IV antibiotics, not from the antibiotics themselves. BTW, people die from infections from those ports who receive antibiotics and medications for other diseases as well. Has nothing to do with the disease they are being treated for, whether it's Lyme or tuberculosis or something else. Doxycycline, the antibiotic most often used to treat Lyme disease, is actually routinely prescribed for years at a time to treat acne. I don't understand how it's considered dangerous for treating Lyme disease in an adult when prescribed for a few months or a year, but perfectly safe to treat a cosmetic condition in a 13 year old when prescribed for 2 years or more. Exact same medication and in many cases, the exact same dosage.

Even the CDC admits that the test for Lyme is only about 50% accurate. A Johns Hopkins study found it to be about 30% accurate. So even the CDC admits that it's pretty damn hard to diagnose and very possible to have it even without a positive test. There is also a difference between positive and CDC positive. The CDC requires that a certain number of bands or markers be present in order for the test to be considered positive. So if you test positive for 3 bands instead of 5, it's considered a negative test. What the CDC has failed to address is why someone would have ANY bands present unless they were exposed to the bacteria. It just doesn't make sense.

It does not cause MS, but that is one of the many things it is mis-diagnosed as. I was diagnosed with MS. I was also diagnosed with RA, then ALS. Lyme mimics all of them. I advocated hard for myself and was eventually treated for Lyme. Low and behold, after antibiotic treatment, my MS, RA, ALS, and all other illnesses were "cured." My point is that I think there are a lot of people who have been mis-diagnosed with these diseases like I was. Had I not questioned them and gone from doctor to doctor, I would still be getting treatment for illnesses I never had. And I'm sure there are people who are still in that boat.

The CDC link again:

https://www.cdc.gov/lyme/postlds/index.html

"Studies funded by the National Institutes of Health (NIH) have not shown that people who received prolonged courses of antibiotics do better in the long run than people treated with placebo. Furthermore, long-term antibiotic or alternative treatments for Lyme disease have been associated with serious complications."

https://www.niaid.nih.gov/diseases-c...tment-research

"These studies did reinforce the evidence that patients reporting PTLDS symptoms have a severe impairment in overall physical health and quality of life. However, prolonged antibiotic therapy showed no benefit when compared with groups who received placebo."

Port infections are not important? They are a complication of long-term term IV antibiotic use. The link also gives further links to other complications, including C. difficile infection and biliary problems.

You said MS is "linked to" Lyme disease. That implies causation.

Difficulty in diagnosis is a separate issue. False positive tests for Lyme may be due to cross reactions with other infections, or they may be due to problems with the testing method used.

See "Additional comments on specificity" here:

https://www.aldf.com/pdf/LD_Sero_Rev...si_article.pdf

"Additionally, the use of only the 'second tier' Western blot also can lead to false positives since this test is qualitative, not quantitative; faint cross-reactive bands can easily (and erroneously) be interpreted as positive."

More here.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4627869/

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4627878/
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