Wellness

[LilacTree]

On 2/12/2015 shoppingT said:

On 2/11/2015 Ford1224 said:

It seems when they cannot figure out how to treat someone's illness, they simply rename it. and so "chronic fatigue syndrome" is now "systemic exertion intolerance disease." Hard to remember, easy to forget. So what now? What's next? A cure? Doubtful at best.

"Post-treatment Lyme disease syndrome" is the medical community's name for "chronic Lyme disease" which is believed not to exist. No treatments are being researched for this "syndrome," as it is more lucrative for the pharmaceutical companies to spend the research money on a "vaccine," not a cure. For those who have it, like my daughter, well . . . too bad I guess, any vaccine they come up with will not help her.

Yet they call the doctors who do try to help people with this extremely disabling disease "quacks" and "scam artists," and even take their medical licenses away. And one can get no disability for this, state or federal. Since she can no longer work, where does that leave her? Oh, that's right, she's nuts, a hypochondriac, and she should be taking major antidepressants or perhaps institutionalized. And hopefully she has a family who can support her. Fortunately, she does get modest alimony from her divorce.

Do I sound bitter? I only have to look at her, she has aged ten years in the last year. But she's faking all of this, she's just lazy. A woman who worked in a salon for 30+ years, standing on her feet cutting hair is now just a deadbeat.

There must be a better word than "bitter."

You are so right. Chronic Lyme exists. I suffered with it. I found a Dr. who finally diagnosed me properly. For many years I thought it was Fibromyalgia. It is reported in the Lyme community that CFS is part of Chronic Lyme.

I hope your daughter finds the treatment she needs.

She is being treated with doxycycline. The doc just upped her dose, so we are so afraid she will "herx." We are trying so hard not to have both of our health issues get worse with this massive move ahead of us. After we are settled into our new apartment together, we will probably both collapse.

[chrystaltree]

On 2/12/2015 sophiamarie said:

I have a neighbor who was trying to get Disability Benefits for CFS. She tried for years with different lawyers and was always denied. My son (a doctor) said she should have concentrated on her "symptoms" eg: fatigue, depression, neurologic problems, etc. and have the documentation to prove it. CFS is too broad an "illness" to qualify for Disability, she was told.

Finally, after seeing a commercial for a lawyer who specializes in Disability Benefits, she was "approved" the first time, by a Judge who has an extremely high "Denial" rate in this city. Something like 85%. Either she was lucky or maybe her lawyer was that good. She was being treated for depression and neurological problem (oh, and also memory loss) and had medical reports specifically for those problems. CFS was never mentioned. The lawyer said the Judge would have thrown that out.

This was quite a few years ago. Maybe things have changed since then but it makes sense to me. I thought I read somewhere here that someone was trying to get Disability for CFS.

Sadly, this type of thing happens all to often when people apply for disability. CFS is not a disease, it doesn't really mean anything except that a person has a collection of symptoms. They don't know that they should omit the CSF name (and the new overly long name) and document their symptoms and how those symptoms impact the body and how they function and how those symptoms prevent them from working. No one is sick and unable to work because they have CSF. They are sick because the have extreme fatigue with chronic headaches, muscle pain, memory loss etc etc.

[sophiamarie]

On 2/12/2015 chrystaltree said:

Sadly, this type of thing happens all to often when people apply for disability. CFS is not a disease, it doesn't really mean anything except that a person has a collection of symptoms. They don't know that they should omit the CSF name (and the new overly long name) and document their symptoms and how those symptoms impact the body and how they function and how those symptoms prevent them from working. No one is sick and unable to work because they have CSF. They are sick because the have extreme fatigue with chronic headaches, muscle pain, memory loss etc etc.

Exactly!!!! They have to stop focusing on CFS entirely and zero in on the symptoms.

[LilacTree]

On 2/12/2015 shoppingT said:

On 2/11/2015 Ford1224 said:

It seems when they cannot figure out how to treat someone's illness, they simply rename it. and so "chronic fatigue syndrome" is now "systemic exertion intolerance disease." Hard to remember, easy to forget. So what now? What's next? A cure? Doubtful at best.

"Post-treatment Lyme disease syndrome" is the medical community's name for "chronic Lyme disease" which is believed not to exist. No treatments are being researched for this "syndrome," as it is more lucrative for the pharmaceutical companies to spend the research money on a "vaccine," not a cure. For those who have it, like my daughter, well . . . too bad I guess, any vaccine they come up with will not help her.

Yet they call the doctors who do try to help people with this extremely disabling disease "quacks" and "scam artists," and even take their medical licenses away. And one can get no disability for this, state or federal. Since she can no longer work, where does that leave her? Oh, that's right, she's nuts, a hypochondriac, and she should be taking major antidepressants or perhaps institutionalized. And hopefully she has a family who can support her. Fortunately, she does get modest alimony from her divorce.

Do I sound bitter? I only have to look at her, she has aged ten years in the last year. But she's faking all of this, she's just lazy. A woman who worked in a salon for 30+ years, standing on her feet cutting hair is now just a deadbeat.

There must be a better word than "bitter."

You are so right. Chronic Lyme exists. I suffered with it. I found a Dr. who finally diagnosed me properly. For many years I thought it was Fibromyalgia. It is reported in the Lyme community that CFS is part of Chronic Lyme.

I hope your daughter finds the treatment she needs.

She has been ill for at least three years, but just quit working Feb. 2014. Yes, we went through all of what you describe, including mercury poisoning when she had all of her fillings redone on one side and then stopped at the advice of her doc at the time who told her this work was just making her sicker as it was just reactivating all of the mercury in her mouth. So she has one side done and the other side not done. And as I said either here or in another thread, her teeth are turning black.

We also know that CFS is part of chronic Lyme, but no doc will say that. All I really know is what I'm seeing and it's breaking my heart. This was a beautiful girl and very young looking woman three years ago. Now, at 51, she looks ten years older. Her beautiful dark hair is falling out in huge chunks, her teeth are terrible. She has lines on her face and skin eruptions all over her body . . . I could go on and on. Although she tested positive for Lyme, the rest of her bloodwork is normal (except for the specific Lyme tests they do which I don't understand), and her brain scans are normal, and her heart, etc. All normal. Something is wrong and since she tested positive for Lyme . . . then that is what has to be wrong.

Yet the medical community says "no, she is depressed over her divorce." Of course she is depressed, but because she's so ill, she couldn't care less about him now. He did put her through the ringer for 18 years though, and I think that cumulatively depleted her physically and emotionally. And he's still doing it.

If I let it happen, and thankfully, I'm not letting it happen so far . . . I could go crazy over this and it will be me ending up in a sanitarium.

Please forgive me for going on like this.

[LilacTree]

On 2/12/2015 chrystaltree said:

On 2/12/2015 sophiamarie said:

I have a neighbor who was trying to get Disability Benefits for CFS. She tried for years with different lawyers and was always denied. My son (a doctor) said she should have concentrated on her "symptoms" eg: fatigue, depression, neurologic problems, etc. and have the documentation to prove it. CFS is too broad an "illness" to qualify for Disability, she was told.

Finally, after seeing a commercial for a lawyer who specializes in Disability Benefits, she was "approved" the first time, by a Judge who has an extremely high "Denial" rate in this city. Something like 85%. Either she was lucky or maybe her lawyer was that good. She was being treated for depression and neurological problem (oh, and also memory loss) and had medical reports specifically for those problems. CFS was never mentioned. The lawyer said the Judge would have thrown that out.

This was quite a few years ago. Maybe things have changed since then but it makes sense to me. I thought I read somewhere here that someone was trying to get Disability for CFS.

Sadly, this type of thing happens all to often when people apply for disability. CFS is not a disease, it doesn't really mean anything except that a person has a collection of symptoms. They don't know that they should omit the CSF name (and the new overly long name) and document their symptoms and how those symptoms impact the body and how they function and how those symptoms prevent them from working. No one is sick and unable to work because they have CSF. They are sick because the have extreme fatigue with chronic headaches, muscle pain, memory loss etc etc.

They don't know how to treat it, so they ignore it. I have great fatigue issues because of the RA, and a lot of physical pain because of my multiple broken vertebrae. But at least I know what is causing it all.

[LilacTree]

On 2/12/2015 lavendar said:

Mindy: inability to stand, dizziness and even fainting has a definite diagnosis. It's called POTS or preload failure. It's diagnosed by a tilt table test. This is done in a hospital and if you have insurance it should cover it.

I just went through the testing. Google POTS. A good primary knows what it is. It is treatable with medication, compression garments (I just ordered compression leggings) and very slow graded exercise.)

Coincidentally, I googled POTS just recently because of my orthostatic problems when I stand up. My heart races to well over 120-130 and I can't stand up for more than five minutes. I have to ask my "doctor" about it the next time I go. Those are the days when I have to stay in bed all day.

[sophiamarie]

I believe a "syndrome" is a blanket statement for a bunch of "symptoms". That is why doctors treat the symptoms. If they can be managed, then most of the battle is won. So what if a person needs a pill for fatigue and another pill for pain, etc.... If they are managed properly, I think I would rather be treated that way than for Chronic Fatigue Syndrome, for which I don't think there is a cure. They have to start somewhere and the symptoms are the place to start.....

[poregirl]

there is a med that has been out for a while called METANX. its a prescription vitamin for pain. its for those who cannot synthesize B vitamins. That condition also leads to severe fatgue.

this is made from methylated B vitamins that the body can use.

[poregirl]

On 2/12/2015 Ford1224 said:

On 2/11/2015 newziesuzie said:

Ford I'm sorry. I've read some of your posts and know your DD's had a very very hard time. My take on the news is they want to give CFS better diagnosis and more attention and more respect for the people who suffer with it so I think it's good news.

We went over to the new apartment we are going to share to sign the lease and I noticed her teeth are turning black. I hope I am not watching my little daughter die.

a med could cause that.

[morganjen]

I watched Dr. Jacob Teitelbaum's interview where he mentions Chronic Fatigue Syndrome on the Healthy Gut Summit going on now. Pretty interesting:

http://healthygutsummit.com/jacob-teitelbaum-md/