![[dr. bob]](/dr-bob-sm.gif)
Dr. Bob is Robert Hsiung, MD,
bob@dr-bob.orgShown: posts 1 to 25 of 36. This is the beginning of the thread.
Posted by jrbecker on August 20, 2004, at 13:41:37
http://www.biospace.com/news_story.cfm?StoryID=17138320&full=1
Corgenix Medical Corporation (CONX) And Autoimmune Technologies, LLC Complete Development Of Diagnostic Product For Fibromyalgia
WESTMINSTER, Colo., Aug. 19 /PRNewswire-FirstCall/ -- Corgenix Medical Corporation (BULLETIN BOARD: CONX) announced today that it has completed the development of the APA ELISA test kit for diagnosing fibromyalgia. The product was developed under a Development and Manufacturing Agreement with Autoimmune Technologies, LLC (Autoimmune), a New Orleans biomedical company. The new product employs Autoimmune's patented technology, and is expected to enter FDA clinical trials in the United States this September.The Development and Manufacturing Agreement provides Corgenix with the exclusive rights to manufacture the kit, which detects anti-polymer antibodies (APA) and serves as the first serum-based assay specific for fibromyalgia, a common pain and fatigue disorder. Corgenix and Autoimmune are collaborating on distribution of the product, and expect to launch the patented APA ELISA test kit this September in Europe through Corgenix' international distribution network. International distribution will be coordinated by Corgenix' subsidiary in the UK. The product will subsequently be available in the US if the FDA grants regulatory clearance.
"Current data suggests that APA-positive fibromyalgia patients comprise the majority of fibromyalgia patients," said Luis Lopez, MD, Chairman and CEO of Corgenix. "This test is intended for use as an aid in the diagnosis of patients presenting with the symptoms and signs of fibromyalgia syndrome, as an aid in differentiating fibromyalgia patients from patients with other autoimmune diseases, and as an aid in determining which fibromyalgia patients have an immune response that is associated with their symptoms."
Fibromyalgia Syndrome (FMS) is a common chronic disorder that afflicts millions of individuals, primarily women. It appears to have multiple causes. FMS signs and symptoms include widespread pain, specific painful "tender points," fatigue, stiffness, sleep disturbance, headache, depression, anxiety, cognitive problems and other symptoms. Not all of the symptoms are present in every patient, and each patient may have different symptoms at different times. The American College of Rheumatology (ACR) criteria for fibromyalgia require that a patient manifest localized pain in at least 11 of 18 possible tender points and have a history of chronic widespread pain of greater than three months' duration. Clinical physicians often consider other symptoms as well when making a diagnosis of FMS. However, all of the diagnostic criteria now generally used for fibromyalgia are subjective, and this leads many people who aren't suffering from fibromyalgia to believe that FMS is a psychological disorder rather than a physical disorder.
"The APA Assay is the first specific clinical laboratory test for objectively identifying fibromyalgia patients," said Russell B. Wilson, PhD, President and Chief Science Officer of Autoimmune Technologies. "The APA ELISA test detects IgG anti-polymer antibodies in human serum. Research has shown that not only are these antibodies detected in the majority of fibromyalgia patients tested, but antibody titers also correlate with the severity of symptoms in these patients."
Between 2% and 5% of adult women in the US are believed to have received a diagnosis of fibromyalgia, but the total number of FMS sufferers might be far greater. Researchers have found that, although half of US women have none of the 18 possible fibromyalgia tender points, approximately 20% of US women may have 6 or more of these tender points. Other research has determined that the direct medical costs of fibromyalgia, which include patient visits to multiple physicians to obtain a diagnosis, may exceed more than $15 billion per year in the US alone.
In discussing the potential market for the APA ELISA test kit in the context of these figures, Doug Simpson, President of Corgenix, said, "Although other laboratory markers exist, this is the only serum-based lab test that specifically picks up fibromyalgia patients. Research findings to date strongly suggest that fibromyalgia in APA-positive patients is associated with an abnormal immune system response. As a result, we expect the APA ELISA test to be useful not only in helping physicians make an initial diagnosis of fibromyalgia but also in indicating to them which of their fibromyalgia patients might benefit from one or more of the many existing drugs or therapies that modulate the immune system."
Mr. Simpson went on to say, "This is a very important step forward for both of our companies. Obtaining rights to this unique technology represents an excellent strategic fit for Corgenix, and expands our business base in markets that we currently serve. We see a very attractive market potential worldwide for this testing, and think this brings significant opportunity to our company. In addition, the relationship provides Autoimmune Technologies with access to a company with a global network to distribute its unique technology to the world markets."
"We are happy to be working with Corgenix in what we feel is a very important endeavor," said Michael D. Charbonnet, CEO of Autoimmune. "Not since the discovery of rheumatoid factors in the 1940s has a laboratory test had the potential to so dramatically change the perception of a medical disorder. Rheumatoid factors provided the earliest laboratory evidence that rheumatoid arthritis was a 'real disease' and led to dramatic advances in treatment for it. We believe that the APA Assay has the ability to do the same thing for fibromyalgia, formally establishing fibromyalgia as a separate and distinct physical disease and leading to greatly improved patient outcomes."
About Corgenix
Corgenix is a leader in the development and manufacture of anti- Phospholipid test kits and other unique diagnostic products for cardiovascular disease and thrombotic risk, being the first on the market with an FDA cleared assay for anti-Cardiolipin (aCL). The company is based in metropolitan Denver and is focused on the development of specialized diagnostic kits for immunology disorders, vascular diseases and bone and joint diseases. Corgenix diagnostic products are commercialized for use in clinical laboratories throughout the world. More information about the company can be found on its Web site, http://www.corgenix.com/.
Corgenix has previously announced a planned merger with Genesis Bioventures, Inc., (Genesis), a biomedical corporation focusing on the development and marketing of novel diagnostics and therapeutics.
About Autoimmune Technologies
Autoimmune Technologies is a privately held early-stage biomedical company based in New Orleans. Autoimmune has licensed several proprietary breakthrough research discoveries, including the APA Assay, from Tulane University School of Medicine and is working to make them commercially available to the medical community. More information about the company can be found on its Web site, http://www.autoimmune.com/.
Statements in this press release that are not strictly historical facts are "forward looking" statements (identified by the words "believe," "estimate," "project," "expect" or similar expressions) within the meaning of the Private Securities Litigation Reform Act of 1995. These statements inherently involve risks and uncertainties that could cause actual results to differ materially from the forward-looking statements. Factors that would cause or contribute to such differences include, but are not limited to, continued acceptance of the Company's products and services in the marketplace, competitive factors, changes in the regulatory environment, and other risks detailed in the Company's periodic report filings with the Securities and Exchange Commission. The statements in this press release are made as of today, based upon information currently known to management, and the company does not undertake any obligation to publicly update or revise any forward-looking statements.
Corgenix Medical Corporation
CONTACT: William Critchfield, CFO of Corgenix Medical Corporation, 1-303-453-8903, wcritchfield@corgenix.com; or Michael D. Charbonnet, CEO ofAutoimmune Technologies, 1-504-529-9944, mdc@autoimmune.comWeb site: http://www.autoimmune.com/http://www.corgenix.com/
Posted by Ilene on August 20, 2004, at 13:41:38
In reply to Diagnostic Product For Fibromyalgia available, posted by jrbecker on August 19, 2004, at 21:24:38
Huh. I thought fibro, like CFS, was of unknown etiology. Do you know anything more about this? And once a person has a diagnosis, then what?
Posted by jlbl2l on August 20, 2004, at 13:41:38
In reply to Re: Diagnostic Product For Fibromyalgia available » jrbecker, posted by Ilene on August 19, 2004, at 22:04:58
antibiotics, antivirals anything that acts as an immune system modulator, and then a cytokine profile switcher that is safe, perhaps benicar as it acts on angiotensin system which is the latest defect found in GWI/CFS patients. Plus the ACE gene variant.
JLBl2l
Posted by SLS on August 20, 2004, at 13:41:39
In reply to Diagnostic Product For Fibromyalgia available, posted by jrbecker on August 19, 2004, at 21:24:38
Women always seem to bear the brunt of autoimmune diseases. Anyone know why?
- Scott
Posted by jlbl2l on August 20, 2004, at 13:41:39
In reply to Re: Diagnostic Product For Fibromyalgia available, posted by SLS on August 20, 2004, at 7:49:44
Women are able to tolerate the father’s contribution of foreign protein in their child during pregnancy because progesterone is highly immunosuppressive. During pregnancy the immune balance switches from Th1 to Th2 balance. This strengthens humoural immunity but weakens cellular immunity. Immune responses are further compromised considerably when zinc and copper are deficient. The use of contraceptive hormones, which are progesterone dominant, and hormone replacement therapy, which also is progesterone dominant in women with an intact uterus, has resulted in an increase in key nutritional deficiencies and increases in autoimmune diseases in women.
JLBl2l
Posted by Larry Hoover on August 20, 2004, at 13:41:39
In reply to Re: Diagnostic Product For Fibromyalgia available » jrbecker, posted by Ilene on August 19, 2004, at 22:04:58
> Huh. I thought fibro, like CFS, was of unknown etiology. Do you know anything more about this? And once a person has a diagnosis, then what?
You might want to consider the wrok of Dr. Pall, of WSU. Like him, I see FMS and CFS as spectrum disorders. The underlying biochemistry is similar, if not the same.
For some reason, his faculty page is not working right, at the moment, but there are links to articles about both syndromes, when it's working.
Here's one of his articles, from elsewhere on the web.
http://www.immunesupport.com/library/showarticle.cfm/ID/4393/e/1/T/CFIDS_FM/
And here's one that suggests what you might do about such a diagnosis, if Pall is right.
http://www.thorne.com/pdf/journal/6-5/chronic_fatigue_syndrome.pdf
Lar
Posted by Larry Hoover on August 20, 2004, at 13:41:40
In reply to Re: Diagnostic Product For Fibromyalgia available, posted by SLS on August 20, 2004, at 7:49:44
> Women always seem to bear the brunt of autoimmune diseases. Anyone know why?
>
>
> - ScottThe answer is likely to be the obvious one, proportional exposure to the various sex hormones.
Lar
Posted by Ilene on August 20, 2004, at 13:41:40
In reply to Re: Diagnostic Product For Fibromyalgia available, posted by Larry Hoover on August 20, 2004, at 9:16:41
The more I read, the more confused I get, which tells me that no one really understands what's going on. For example, infections are always treated with antibiotics, but what I find when I read these articles is a laundry list of herbs and supplements that *might* help.
My CFS is often triggered by hypotension, but not always.
I don't have a doctor yet (just moved). If anyone knows of a doc in the San Francisco are who treats CFS I'd appreciate it.
Posted by dazedandconfused on August 20, 2004, at 13:41:41
In reply to Treatments for CFS or fibro, posted by Ilene on August 20, 2004, at 10:47:17
Ilene,
If you don't mind my asking. The reason is I have been wallowing around for the past four years not making much progress. Suffered episode of major depression four years ago which lifted within the year. However, still have not returned to my initial level of functioning. Major symptoms are debilitating fatigue, hypersomnia, daytime sleepiness. Kept blaming it on depression and/or meds. But the bottom line is I don't feel sad....just so tired. My therapist agrees I don't have major depression but still have dysthmia. Have tried several different meds which don't seem to be doing anything. Starting to search for physical reasons for fatigue...thyroid is fine. My PCP seems to think it is probably CFS. Been to an allergist who told me I was allergic to everything and probably have CFS. Referred to rheaumatolgist.Bottom line, how do you tease out the fatigue,etc. of CFS from good ole' depression.
Thanks so much in advance!
dazed
Posted by dazedandconfused on August 20, 2004, at 13:41:41
In reply to Ilene - how was your CFS diagnosed?, posted by dazedandconfused on August 20, 2004, at 11:48:29
Posted by Larry Hoover on August 20, 2004, at 13:41:42
In reply to Ilene - how was your CFS diagnosed?, posted by dazedandconfused on August 20, 2004, at 11:48:29
> Ilene,
> If you don't mind my asking. The reason is I have been wallowing around for the past four years not making much progress. Suffered episode of major depression four years ago which lifted within the year. However, still have not returned to my initial level of functioning. Major symptoms are debilitating fatigue, hypersomnia, daytime sleepiness. Kept blaming it on depression and/or meds. But the bottom line is I don't feel sad....just so tired. My therapist agrees I don't have major depression but still have dysthmia. Have tried several different meds which don't seem to be doing anything. Starting to search for physical reasons for fatigue...thyroid is fine. My PCP seems to think it is probably CFS. Been to an allergist who told me I was allergic to everything and probably have CFS. Referred to rheaumatolgist.
>
> Bottom line, how do you tease out the fatigue,etc. of CFS from good ole' depression.
>
> Thanks so much in advance!
>
> dazedIt's tough. Traditionally, CFS is a diagnosis of exclusion. Check everything else, and if you don't find a diagnosis, you might have CFS. Check my first post, above. The first link gives some ideas of some biochemical abnormalities that you might be able to test for. Also, your experience with environmental sensitivity is also commonplace, with the same cause as CFS.
For me, it was achieving the stable mood, and then recognizing that a host of symptoms that were once thought to be aspects of severe major depression did not remit along with the mood. This second group of symptoms varies together, suggesting they have a similar cause, and perhaps, treatment. Because you have hypersomnia, and daytime fatigue, it's possible you have a sleep disorder, rather than CFS. Just a thinking point.
CFS is a bit$*. It helps to gently push yourself, then rest, then push a tad harder, then rest, and so on. Gradually build endurance, but always rest after the efforts. It's been called the finger method, because if you spread your hand in front of your face, you see finger-space-finger-space.... the idea is a finger of exercise (a peak on a graph of activity) is followed by the space of rest (a trough on a graph of activity). Over time, your endurance can build substantially. But always be wary of what I call the energy budget.
When I look at what I have to accomplish, or what I would like to accomplish, I assess it in regards to my daily energy budget. I awake with some amount of energy, and I've got a little "savings", so if I need a little extra for that day's budget, it's available to me. But just as with money, if I spend it today, it's not available tomorrow. What I must always guard against is going into the red, overdrawing my energy account. If I let that happen, I fall down, go boom.
Lar
Posted by dazedandconfused on August 20, 2004, at 13:41:42
In reply to Re: Ilene - how was your CFS diagnosed? » dazedandconfused, posted by Larry Hoover on August 20, 2004, at 12:20:32
> > Ilene,
> > If you don't mind my asking. The reason is I have been wallowing around for the past four years not making much progress. Suffered episode of major depression four years ago which lifted within the year. However, still have not returned to my initial level of functioning. Major symptoms are debilitating fatigue, hypersomnia, daytime sleepiness. Kept blaming it on depression and/or meds. But the bottom line is I don't feel sad....just so tired. My therapist agrees I don't have major depression but still have dysthmia. Have tried several different meds which don't seem to be doing anything. Starting to search for physical reasons for fatigue...thyroid is fine. My PCP seems to think it is probably CFS. Been to an allergist who told me I was allergic to everything and probably have CFS. Referred to rheaumatolgist.
> >
> > Bottom line, how do you tease out the fatigue,etc. of CFS from good ole' depression.
> >
> > Thanks so much in advance!
> >
> > dazed
>
> It's tough. Traditionally, CFS is a diagnosis of exclusion. Check everything else, and if you don't find a diagnosis, you might have CFS. Check my first post, above. The first link gives some ideas of some biochemical abnormalities that you might be able to test for. Also, your experience with environmental sensitivity is also commonplace, with the same cause as CFS.
>
> For me, it was achieving the stable mood, and then recognizing that a host of symptoms that were once thought to be aspects of severe major depression did not remit along with the mood. This second group of symptoms varies together, suggesting they have a similar cause, and perhaps, treatment. Because you have hypersomnia, and daytime fatigue, it's possible you have a sleep disorder, rather than CFS. Just a thinking point.
>
> CFS is a bit$*. It helps to gently push yourself, then rest, then push a tad harder, then rest, and so on. Gradually build endurance, but always rest after the efforts. It's been called the finger method, because if you spread your hand in front of your face, you see finger-space-finger-space.... the idea is a finger of exercise (a peak on a graph of activity) is followed by the space of rest (a trough on a graph of activity). Over time, your endurance can build substantially. But always be wary of what I call the energy budget.
>
> When I look at what I have to accomplish, or what I would like to accomplish, I assess it in regards to my daily energy budget. I awake with some amount of energy, and I've got a little "savings", so if I need a little extra for that day's budget, it's available to me. But just as with money, if I spend it today, it's not available tomorrow. What I must always guard against is going into the red, overdrawing my energy account. If I let that happen, I fall down, go boom.
>
> Lar
>
>Hey Larry,
Let me start by saying I'm amazed at your wealth/breadth of knowledge and am so glad you share so freely with this board. I lurk often, post seldom, and always read your posts (though many go over my head).What you describe is exactly my experience. My mood is fine...not sad at all. I would not describe myself as a moody person. Frustrated. That I can't do more. That nothing seems to help. That I don't feel like I have a defnitive diagnosis. That my cognitive skills have declined.
I have considered getting a sleep study done. PDOC (who is great) tells me it doesn't matter what causes the sleepiness / fatigue, treatment is the same. Which is true to some extent. But I firmly believe a firm diagnosis is necessary. If for nothing else, to know which message board to post to:). By the way, I have started perusing the immunesupport.com website.
A couple of notes/questions.
1. What makes you think a sleep disorder vs. CFS? I thought hypersomnia and daytime sleepiness were also symptoms of CFS.
2. Again with the diagnosis. I also have major organizational / concentration / ADD symptoms. Neuropsych. testing showed no abnormalities. I can of course hyperfocus on some stupid test in a test setting, but I still can't balance my checkbook. Or clean my house. Or keep up with laundry. I have enormous difficulty comprehending what I read. Or I fall asleep when I read. Now I find out CFS can include cognitive / ADD like symptoms. Again, how do you tease it out? (other than relying on the "experts"). Basically, I piddle around my house all day, do minimal housekeeping, peruse the internet (obsessively) trying to figure out what is wrong with me, and get nothing done. Many unfinished projects, disorgnaization, etc. Basically overwhelmed with the tasks of daily life...not anxiety overwhelmed. Just feel busy all day, and get nothing done. Haven't worked since I got sick (married...luckily)
3. What's your opinion on the use of stimulants and Provigil in the treatment of CFS?Okay, this is a long enough. Very interested in any info you have. I would like to respectfully post another message to you over on alternative about treatments.
THANK YOU!!!
dazed
Posted by Ilene on August 20, 2004, at 13:41:43
In reply to Ilene - how was your CFS diagnosed?, posted by dazedandconfused on August 20, 2004, at 11:48:29
I never thought of fatigue as my primary symptom. I was getting frequent recurrences of what I thought of as flu. I had sore throats, swollen glands, stomach problems, cognitive difficulties, and malaise. In between I was okay.
My misdiagnoses included hepatitis C and ulcers.
I was diagnosed w/ CFS by a rheumatologist/immunologist at George Washington University Medical Center in Washington, DC. It was based on exclusion of everything else plus my history.
I also had post-exertional fatigue, but at the time I didn't know it was abnormal.
It turns out I have neurally mediated hypotension, which is associated with CFS.
I get light-headed in the heat, sometimes even after a shower, after I exercise, and sometimes after drinking coffee.
I had the CFS under control for several months by avoiding heat and exercise, but it returned when I was under extreme stress.
I don't have any major allergies (some things give me a little hay fever) or food sensitivities.
I started getting symptoms about 20 years ago. I don't recall any particular illness as a trigger. I've been depressed since I was a child, so I don't know if the depression is entirely distinct or not.
The internist who used to treat me prescribed Florinef for my low blood pressure. It seems to help, esp. since I'm taking an MAOI that lowers my BP. Other than that I take vitamins and minerals, when I remember.
The internist I who was treating me before I moved said he considered depression a symptom of CFS. He said his patients needed very high doses of ADs. (He is also Laura Hillenbrand's MD. She's the author of Sea Biscuit, and has written and been interviewed about her CFS.)
Posted by dazedandconfused on August 20, 2004, at 13:41:44
In reply to Re: Ilene - how was your CFS diagnosed? » dazedandconfused, posted by Ilene on August 20, 2004, at 13:21:11
> I never thought of fatigue as my primary symptom. I was getting frequent recurrences of what I thought of as flu. I had sore throats, swollen glands, stomach problems, cognitive difficulties, and malaise. In between I was okay.
>
> My misdiagnoses included hepatitis C and ulcers.
>
> I was diagnosed w/ CFS by a rheumatologist/immunologist at George Washington University Medical Center in Washington, DC. It was based on exclusion of everything else plus my history.
>
> I also had post-exertional fatigue, but at the time I didn't know it was abnormal.
>
> It turns out I have neurally mediated hypotension, which is associated with CFS.
>
> I get light-headed in the heat, sometimes even after a shower, after I exercise, and sometimes after drinking coffee.
>
> I had the CFS under control for several months by avoiding heat and exercise, but it returned when I was under extreme stress.
>
> I don't have any major allergies (some things give me a little hay fever) or food sensitivities.
>
> I started getting symptoms about 20 years ago. I don't recall any particular illness as a trigger. I've been depressed since I was a child, so I don't know if the depression is entirely distinct or not.
>
> The internist who used to treat me prescribed Florinef for my low blood pressure. It seems to help, esp. since I'm taking an MAOI that lowers my BP. Other than that I take vitamins and minerals, when I remember.
>
> The internist I who was treating me before I moved said he considered depression a symptom of CFS. He said his patients needed very high doses of ADs. (He is also Laura Hillenbrand's MD. She's the author of Sea Biscuit, and has written and been interviewed about her CFS.)Ilene,
Thanks so much for your post. If you don't mind my asking, could you tell me a bit about your cognitive problems, malaise, and post-exertional fatigue? I ask because I definitely have cognitive difficulties (ADD like symptoms I posted in my above "Larry youre my idol post). I am able to exercise but nowhere near what I used to be able to. I walk instead of run, do yoga, pilates, stuff like that. I try to do cardio 3-5 times a week for 30 min. and can even do strenth training at times. Although one of my symptoms is an overall feeling of weakness. I sometimes get dizzy when I exercise and ususally have to lay down for awhile afterwards.I sometimes wonder if suffering an episode of major depression was the so called "trigger" that started the CFS...
Thanks again. I really need some help at this point.
Posted by Ilene on August 20, 2004, at 20:08:18
In reply to Ilene, posted by dazedandconfused on August 20, 2004, at 13:32:01
I forgot to note the swollen lymph nodes and muscle aches. Cognitive problems are forgetfulness (see above), inability to concentrate, and a sense of fogginess or fuzziness.
Getting dizzy and wanting to lie down after exercise sure sounds familiar.
Here are some links to info about NMH:
http://www.geocities.com/HotSprings/Spa/4225/neurally.html
http://home.vicnet.net.au/~mecfs/general/nmh1.html
http://home.vicnet.net.au/~mecfs/general/nmh.html
http://www.cfids.org/youth/articles/medical/rowe95.asp
http://www.ourfm-cfidsworld.org/html/nmh.html
http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Abstract&list_uids=95404846
http://www.immunesupport.com/library/showarticle.cfm/ID/3499/e/1/T/CFIDS_FM/
and on and on and on...just do a google searchNot all researchers think that there is a link between NMH & CFS. Because the CFS diagnosis is often one of exclusion I think there is probably more than one cause. The two conditions also exist independently.
I never had a tilt table test. It sounds ghastly. I self-diagnosed, and when I found a doc who was familiar w/ the condition he agreed with me.
Posted by dazedandconfused on August 20, 2004, at 21:09:59
In reply to Re: Ilene » dazedandconfused, posted by Ilene on August 20, 2004, at 20:08:18
Hi Ilene,
Thanks again. I appreciate the links re NMH. I am on a waiting list to see Dr. Nancy Klimas at Miami who I believe does the tilt table test. My blood pressure ususally runs low - @60/100 or so. With my luck, I probably have it.Sorry if I missed it, but did you say how your malaise and post-exertional fatigue manifest itself? Are you able to exercise?
THANKS!
Dazed
Posted by KaraS on August 21, 2004, at 4:01:46
In reply to Treatments for CFS or fibro, posted by Ilene on August 20, 2004, at 10:47:17
> The more I read, the more confused I get, which tells me that no one really understands what's going on. For example, infections are always treated with antibiotics, but what I find when I read these articles is a laundry list of herbs and supplements that *might* help.
>
> My CFS is often triggered by hypotension, but not always.
>
> I don't have a doctor yet (just moved). If anyone knows of a doc in the San Francisco are who treats CFS I'd appreciate it.
I think that in Dr. Jacob Teitelbaum's book, "From Fatigued to Fantastic", he has a section where he lists doctors who treat CFS and Fibromyalgia. (I don't know if you're familiar with his work or not. He does list a ton of medications and supplements to take.) I'm assuming that there would be at least one doctor listed in San Francisco. It might be a good place to start looking anyway.Good luck.
Kara
Posted by Larry Hoover on August 21, 2004, at 10:36:37
In reply to Treatments for CFS or fibro, posted by Ilene on August 20, 2004, at 10:47:17
> The more I read, the more confused I get, which tells me that no one really understands what's going on. For example, infections are always treated with antibiotics, but what I find when I read these articles is a laundry list of herbs and supplements that *might* help.
If the link to viral illness is more than illusory, you may get an insight from what viruses do, when we're infected by one. They insert their own DNA into our cells, and at least in part, hijack our own biochemical machinery. From that point onwards, you're not just dealing with the genes God gave you. You're God-given + viral DNA (which may be from Hades, for all I know).
>
> My CFS is often triggered by hypotension, but not always.
>
> I don't have a doctor yet (just moved). If anyone knows of a doc in the San Francisco are who treats CFS I'd appreciate it.Try checking here:
http://www.co-cure.org/Good-Doc.htmMy difficulty in obtaining specialized care is that treatment of FMS or CFS is very intensive, from the standpoint of time and effort spent with each patient. Many or most of the good ones are booked solid. First come, first served. Some of the better ones have dedicated clinics, so the supports are given by associated staff, not just by the doctor themself. That said, others use the clinics as money factories. I'm a cynic, I guess.
Lar
Posted by Larry Hoover on August 21, 2004, at 11:10:06
In reply to Larry - you're my idol!, posted by dazedandconfused on August 20, 2004, at 12:57:05
Do you imagine that I'm going to ignore a post with a subject line like that? <Spock eyebrow>
> > It's tough. Traditionally, CFS is a diagnosis of exclusion. Check everything else, and if you don't find a diagnosis, you might have CFS. Check my first post, above. The first link gives some ideas of some biochemical abnormalities that you might be able to test for. Also, your experience with environmental sensitivity is also commonplace, with the same cause as CFS.
> >
> > For me, it was achieving the stable mood, and then recognizing that a host of symptoms that were once thought to be aspects of severe major depression did not remit along with the mood. This second group of symptoms varies together, suggesting they have a similar cause, and perhaps, treatment. Because you have hypersomnia, and daytime fatigue, it's possible you have a sleep disorder, rather than CFS. Just a thinking point.
> >
> > CFS is a bit$*. It helps to gently push yourself, then rest, then push a tad harder, then rest, and so on. Gradually build endurance, but always rest after the efforts. It's been called the finger method, because if you spread your hand in front of your face, you see finger-space-finger-space.... the idea is a finger of exercise (a peak on a graph of activity) is followed by the space of rest (a trough on a graph of activity). Over time, your endurance can build substantially. But always be wary of what I call the energy budget.
> >
> > When I look at what I have to accomplish, or what I would like to accomplish, I assess it in regards to my daily energy budget. I awake with some amount of energy, and I've got a little "savings", so if I need a little extra for that day's budget, it's available to me. But just as with money, if I spend it today, it's not available tomorrow. What I must always guard against is going into the red, overdrawing my energy account. If I let that happen, I fall down, go boom.
> >
> > Lar> Hey Larry,
> Let me start by saying I'm amazed at your wealth/breadth of knowledge and am so glad you share so freely with this board.
And by saying so, you make it all the more likely that I will continue. Thanks.
> I lurk often, post seldom, and always read your posts (though many go over my head).
Don't be afraid to ask for the Cliff's Notes version, okay? By the nature of a question, I can often figure out just what the next bit in your personal comprehension is. If I miss the mark, I'm happy to try again. 'Kay?
> What you describe is exactly my experience. My mood is fine...not sad at all. I would not describe myself as a moody person. Frustrated. That I can't do more. That nothing seems to help. That I don't feel like I have a defnitive diagnosis. That my cognitive skills have declined.
Frustrated. Ya. I get it.
> I have considered getting a sleep study done. PDOC (who is great) tells me it doesn't matter what causes the sleepiness / fatigue, treatment is the same. Which is true to some extent.
Your pdoc is wrong. The whole point of a sleep study is to study *your* sleep. Not a hypothetical average guy's sleep.
> But I firmly believe a firm diagnosis is necessary.
Yes, it is.
> If for nothing else, to know which message board to post to:). By the way, I have started perusing the immunesupport.com website.
You can't go wrong posting here, it seems. Bob might move you around, but there is always somewhere, here.
> A couple of notes/questions.
Yay!
> 1. What makes you think a sleep disorder vs. CFS? I thought hypersomnia and daytime sleepiness were also symptoms of CFS.Restorative sleep, the feeling that you got enough, comes from specific types of sleep. If you're not getting those stages, in sufficient amounts, your body can react by increasing the tendency to sleep....but that still can fail. You hypersleep, but still wake sleep-deprived.
CFS/fibro can also manifest with intractable insomnia. I suspect it has to do with whether your adrenals have failed yet, or not. But I don't want to distract this discussion onto a hypothetical tangent..... Push for a sleep study. Push hard.
> 2. Again with the diagnosis. I also have major organizational / concentration / ADD symptoms. Neuropsych. testing showed no abnormalities.
Good call, to check for brain/CNS abnormalities.
> I can of course hyperfocus on some stupid test in a test setting, but I still can't balance my checkbook. Or clean my house. Or keep up with laundry. I have enormous difficulty comprehending what I read. Or I fall asleep when I read. Now I find out CFS can include cognitive / ADD like symptoms. Again, how do you tease it out? (other than relying on the "experts").
Just as there is no real definitive diagnostic test, there is no definitive treatment. Nonetheless, there are treatment protocols. You try things that have worked for others, and if e.g. sleep restorative parameters, and cognition improve, then you're on the right track....your right track.
Still, in your case, I'm intuitively drawn to sleep issues. Get that bit sorted out, and your other things may well resolve. You may just be chronically and massively sleep-deprived, despite the hypersomnia.
> Basically, I piddle around my house all day, do minimal housekeeping, peruse the internet (obsessively) trying to figure out what is wrong with me, and get nothing done.
Ahh, but you successfully focus on Internet work. Don't dismiss that, okay? You're following your gut, non?
> Many unfinished projects, disorgnaization, etc. Basically overwhelmed with the tasks of daily life...not anxiety overwhelmed. Just feel busy all day, and get nothing done. Haven't worked since I got sick (married...luckily)
Yup, lucky. Lucky have (assumed) understanding partner, too.
> 3. What's your opinion on the use of stimulants and Provigil in the treatment of CFS?
Can make things worse, if you haven't addressed the underlying vulnerabilities. Like flogging a tired horse. You get a little more output, but at a very high price.
Get a foundation, then think about the house (type of life) you can build on that.
> Okay, this is a long enough. Very interested in any info you have. I would like to respectfully post another message to you over on alternative about treatments.Respectfully is nice, but I don't like to sit on the pedestal. I'm afraid of heights.
> THANK YOU!!!
WELCOME!
> dazedNot so dazed, from this perspective....
Lar
Posted by Larry Hoover on August 21, 2004, at 11:17:18
In reply to Re: Ilene » dazedandconfused, posted by Ilene on August 20, 2004, at 20:08:18
> Getting dizzy and wanting to lie down after exercise sure sounds familiar.
>
> Here are some links to info about NMH:
>
> http://www.geocities.com/HotSprings/Spa/4225/neurally.html
> http://home.vicnet.net.au/~mecfs/general/nmh1.html
> http://home.vicnet.net.au/~mecfs/general/nmh.html
> http://www.cfids.org/youth/articles/medical/rowe95.asp
> http://www.ourfm-cfidsworld.org/html/nmh.html
> http://www.ncbi.nlm.nih.gov/entrez/query.fcgi?cmd=Retrieve&db=PubMed&dopt=Abstract&list_uids=95404846
> http://www.immunesupport.com/library/showarticle.cfm/ID/3499/e/1/T/CFIDS_FM/
> and on and on and on...just do a google search
>
> Not all researchers think that there is a link between NMH & CFS. Because the CFS diagnosis is often one of exclusion I think there is probably more than one cause. The two conditions also exist independently.My impression of the link between the two is that NMH indicates the individual is over-exerting at their particular resiliency level. It is all too easy to compare your current exercise exertion both to others around you, and more critically, to your own past abilities. You get over your own current real-time threshold, and your heart gets messed up.
With CFS, you can and will over-exert. It's the nature of the beast. One manifestation of over-exertion is NMH. You manage CFS, or it will manage you.
Just my cognitive perspective,
Lar
Posted by Ilene on August 21, 2004, at 13:19:21
In reply to Re: Ilene, posted by dazedandconfused on August 20, 2004, at 21:09:59
> Hi Ilene,
> Thanks again. I appreciate the links re NMH. I am on a waiting list to see Dr. Nancy Klimas at Miami who I believe does the tilt table test. My blood pressure ususally runs low - @60/100 or so. With my luck, I probably have it.
>You don't need to have low blood pressure to have NMH, but I think it's more common than not. Good luck w/ the tilt table test.
> Sorry if I missed it, but did you say how your malaise and post-exertional fatigue manifest itself? Are you able to exercise?
I used to swim 2-3 miles/week, but it was making me sicker and sicker without my realizing that was the cause. Symptoms:
It took me much longer to get into condition than anyone else. I pretty much plateaued at a medium level of fitness.
I would climb out of the pool and immediately feel overheated. I could walk out into below-freezing weather with wet hair and feel comfortable.
I felt limp, exhausted, and light-headed. After swimming a mile I could hardly carry my swim bag up the stairs.
In the tropical summers of Washington DC I would sweat profusely, feel exhausted and light-headed. The same thing happens when I stay in a hot shower too long.My old internist said I could probably exercise again, but I haven't gotten set up yet. I'll probably put my bike on a stand and get a heart rate monitor. In theory, if I keep my heart rate down I should be able to exercise. I would walk if I could, but I have bad feet.
Stress also triggers the CFS, and lately I've had bad days with no apparent trigger.
>
Posted by Ilene on August 21, 2004, at 13:28:02
In reply to Re: Treatments for CFS or fibro » Ilene, posted by KaraS on August 21, 2004, at 4:01:46
>
>
> I think that in Dr. Jacob Teitelbaum's book, "From Fatigued to Fantastic", he has a section where he lists doctors who treat CFS and Fibromyalgia. (I don't know if you're familiar with his work or not. He does list a ton of medications and supplements to take.) I'm assuming that there would be at least one doctor listed in San Francisco. It might be a good place to start looking anyway.
>My previous doctor said he had treated some of Teitelbaum's patients, and it took a long time to get them healthy again. I think he's in it for the money. He has seminars for health care providers that cost quite a bit.
Posted by Ilene on August 21, 2004, at 13:39:42
In reply to Re: Treatments for CFS or fibro » Ilene, posted by Larry Hoover on August 21, 2004, at 10:36:37
> > I don't have a doctor yet (just moved). If anyone knows of a doc in the San Francisco are who treats CFS I'd appreciate it.
>
> Try checking here:
> http://www.co-cure.org/Good-Doc.htm
>Thanks for the link. No docs on it that are actually in San Francisco. You'd think there'd be at least one.
> My difficulty in obtaining specialized care is that treatment of FMS or CFS is very intensive, from the standpoint of time and effort spent with each patient. Many or most of the good ones are booked solid. First come, first served. Some of the better ones have dedicated clinics, so the supports are given by associated staff, not just by the doctor themself. That said, others use the clinics as money factories. I'm a cynic, I guess.
>I hear what you say about money factories. I'm a cynic too. I was really lucky to find my doc in D.C.
Posted by Ilene on August 21, 2004, at 13:55:58
In reply to Re: Ilene » Ilene, posted by Larry Hoover on August 21, 2004, at 11:17:18
> My impression of the link between the two is that NMH indicates the individual is over-exerting at their particular resiliency level. It is all too easy to compare your current exercise exertion both to others around you, and more critically, to your own past abilities. You get over your own current real-time threshold, and your heart gets messed up.
>
> With CFS, you can and will over-exert. It's the nature of the beast. One manifestation of over-exertion is NMH. You manage CFS, or it will manage you.
>
> Just my cognitive perspective,
> LarMaybe, except that the drop in BP can be triggered by heat and psychological stress. I suppose you could consider these a form of over-exertion. Not only is NMH poorly understood, but the details of the connection between it and CFS are completely mysterious.
Posted by Larry Hoover on August 21, 2004, at 14:16:59
In reply to Re: Ilene, posted by Ilene on August 21, 2004, at 13:55:58
> Maybe, except that the drop in BP can be triggered by heat and psychological stress. I suppose you could consider these a form of over-exertion. Not only is NMH poorly understood, but the details of the connection between it and CFS are completely mysterious.
>One of your links connected the specific effect to a parodoxical response to adrenaline. The key disruption in CFS is, IMHO, adrenal. Heat and psychological stressors can both trigger adrenal responses....
Anyway, I was just speculating. I know my own CFS is a mysterious beast. I hesitate to extrapolate to others.
Lar
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