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Post by LymeEnigma on Jun 2, 2008 9:25:06 GMT -8
Thanks for the links, guys!
It is interesting to see all of the theories surrounding CFS and FM; I'd be willing to bet that there is more than one pathogen responsible....
Nyxie, it's interesting you posted a link on Gilbert's disease; my diabetic, hypothyroid younger sister got diagnosed with that a number of years ago. The doctor (on-campus college doc) just told her that it benignly affected her liver count, and nothing more ... interesting to see the thyroid connection written down, right there, in black and white....
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Post by nyxie63 on Jun 3, 2008 3:24:26 GMT -8
I'd originally saved the page because of the link to CFS, but found the hypoT thing to be interesting as well.
I sincerely hope your sister has since found a more competent doc to help her manage all this. Yeesh! Most campus docs aren't' worth the price of the air they breathe.
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Post by LymeEnigma on Jun 3, 2008 8:34:08 GMT -8
She's out of college now ... and wholly uninsured.
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Post by enochroot on Jun 4, 2008 0:45:17 GMT -8
Some more GOOD CFS stuff: livewithcfs.blogspot.com/2007/07/cfs-and-valcyte.htmlPlus this tidbit that really resonates with ME as it's about the Hep B vaccine : ================================================================ From the November 1, 2006 Lyndonville News: Question...on people who develop CFIDS as a result of inoculation. I had one flu shot in my life, became terribly ill within 48 hours with what felt like flu. And it was the flu that never went away, eventually dx'd as CFIDS. From my years on online support groups, I know there are many more people who have reported the same occurrence. Answer: There is no doubt that inoculations can set off the process. These shots are designed to stimulate the immune system in a way that can prevent a future infection with something like a strain of the flu virus. Therefore it is just like getting that particular flu virus strain and thus can set off the process. The vaccine that I have seen causing the greatest problem is the Hepatitis B. Maybe that is a coincidence, but... ================================================================= The question is posed to a Dr David Bell, a CFS specialist in NY www.davidsbell.com/LynNewsV3N1.htmI like his attitude ============================================== As we will discuss in the next chapter, infection is not the only cause of ME/CFS. But I suspect that there is a common mechanism past the immune dysregulation that leads to the persistence of exhaustion and pain that is similar to the symptoms initiated by an infection. What is frustrating for any experienced clinician is this: we now know, through experience, that patients with debilitating fatigue and exhaustion because of a possible “virus” that is not really mono is not going to get better. But it is still accepted medical practice to say that there is really no problem, everything is fine, and maybe we should get you to a psychiatrist if things don’t shape up over the next three weeks. The role of infection initiating what we are now calling ME/CFS is becoming very clear scientifically. I can only hope that this information will be communicated to medical providers in the future. ==============================================
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Post by nyxie63 on Jun 4, 2008 2:24:31 GMT -8
LE, I'm sorry about your sister. There has to be *something* out there for her.
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Post by nyxie63 on Jun 4, 2008 2:27:55 GMT -8
Enoch, (hey! I got your name right this time!) ;D
I like Dr Bell's attitude as well. Think he might be the doc you're looking for? Is he accepting new patients?
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Post by LymeEnigma on Jun 4, 2008 9:27:22 GMT -8
Nyxie, unfortunately my sister is not taking care of herself, on top of it all. She suffers from an eating disorder, and she will go weeks at a time without taking her insulin (too many times I've bugged her to test her blood sugar, and literally it was too high to show a result). As much as I wish she could get her health straightened out through a general practitioner, and maybe a specialist or two, she's just overall in a bad place ... and I really do feel helpless. I had an eating disorder when I was younger, too (been on the wagon for fourteen years, now), but still I am at a loss as to what I can do to help her. It's very frustrating ... and very scary. In her mid twenties, she's already losing teeth, and she has about half the hair she should. Enoch, I have started a thread on CFS/FM in the "Scientific Studies on Lyme" section (actual studies, not hypothetical): lymeenigma.proboards104.com/index.cgi?board=studies&action=display&thread=612. Right now I just have the one study connecting CFS/FM to Lyme and Mycoplasma, but I would definitely like to extend that thread with more studies, covering the possible viral agents, as well. *edited to add: I've gone through previous links in this thread and added all of the peer-reviewed material to the above thread.
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Post by nyxie63 on Jun 5, 2008 3:41:25 GMT -8
LE, I'm so sorry. I know how frustrating it can be to see someone you care for not do anything to help themselves. What else is there to do beyond putting a flea in their ear and hoping they'll notice? If we keep harping on them about it, they'll just push us away. Sometimes, they'll increase their destructive behavior, just to spite us.
All we can do is love them, be there to listen, and help them pick up the pieces when they're ready to do so.
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Post by LymeEnigma on Jun 5, 2008 7:58:08 GMT -8
Yes, that's exactly it. I know that back when I was neck-deep in the anorexia/bulimia, there was nothing anyone would have been able to say or do to alter my unhealthy behaviors. And those who tried became nothing more than obstacles complicating my rituals; I could get downright sneaky when it came to circumventing imposed outside controls. I had it in my head that the rest of the world was conspiring to get me fat, for some reason, and I know that deep down Kate has that same delusion.
A miracle literally saved me; I just woke up one day, looked at myself in the mirror, and saw the skeleton instead of a bloated pig. It still was one of the hardest things I ever did to cling to that image and move toward healthy habits (and sometimes, albeit rarely, I still look in the mirror and see a distorted view), and unfortunately such change is not a gift I can simply pass off to my sister, as much as I wish I could. She turns to me for support, because she knows I understand what she is going through ... and at the same time all I can do is kick myself because, with all that came with my recovery, I feel like I should somehow know those magic words that will pull her from the spell and show her just how beautiful she could be if she just would put on ten or fifteen pounds....
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Post by enochroot on Jun 5, 2008 12:37:48 GMT -8
As a diabetic, i can relate...Diabetes of either type is a relentless stalker and waits to ravage your health bit by bit whenever you let your guard down and kid yourself into thinking you can just ignore it. I came to the conclusion early in my diagnosis, to treat it like a 3 legged stool, one leg - medications, one leg - diet, one leg - exercise The stool topples if you ignore ANY one of them. My stool has certainly wobbled over the years but... have kept my HbA1C at "5.something" each year since I got diagnosed. I shudder to think about what your sister's HbA1C might be
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Post by enochroot on Jun 5, 2008 12:42:39 GMT -8
Got my first epidural spinal cortisone injection yesterday... Not sure how long it takes to notice an effect
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Post by enochroot on Jun 5, 2008 21:00:57 GMT -8
AND..CIGNA reached another all time low(with me) They cut off my access to PT. The rep on the phone said "oh no, WE grant you unlimited visits under your plan - you see the company we subcontract the management of access to PT cut you off" I said:"so who do I talk to over there?" She said "you can't, they don't talk to claiments". Turns out Heather at ORTHONET has decided what my medical needs are! I have to pay for a visit with my GP, and have HIM file an appeal... sc*mbags...I told "Veronica" (my CIGNA phone drone) "well, when my mgmnt wants to know why I'm out on medical leave I will give them your name and number, and tell them you will talk to "Heather" for them" and I hung up.
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Post by LymeEnigma on Jun 6, 2008 8:56:25 GMT -8
Unbelievable! I would be writing letters by now....
I believe you should notice the effects of the shot within the week, if you're going to notice any benefit. The shot, itself, should have you sore for a couple of days.
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Post by enochroot on Jun 17, 2008 23:02:52 GMT -8
Saw the doc who did the spinal injection - gotta wait a MONTH fot the next one from now... but he's got vacation and is heavily booked. Good news is a new (out of network, THANKS CIGNA) phys therapy place in NYC, much more aggressive and advanced cervical methods.
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Post by LymeEnigma on Jun 18, 2008 9:27:31 GMT -8
Good that you're getting the physical therapy.
I totally missed the post on Dr. Bell, somehow ... I really like that quote. The attitude he describes in most infectious diseases specialists regarding viral-based fatigue almost perfectly mirrors some of the crap my infectious diseases specialist said before I gave him the boot.
The level of apathy that seemingly exists in modern medicine is downright scary.
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