From Chronic Fatigue to Lyme: Medically Unexplained No More By Pamela Weintraub on October 9, 2009 in Emerging Diseases
Hard-to-see things like spirochetes or retroviruses aren't going to stop some flat-Earthers from labeling sick patients psychiatric and consigning them to lives of ignominy, untreated, rejected, and in pain. But for patients, things may be changing --because science is moving on.
Pam, thank you again for your extraordinary article you've written above coming so many things.
I'm glad you touched on the munchousen's by proxy; the lyme patients community is touched by this term so much, and our children suffer due to the public and medical community NOT understanding anything about lyme disease and co-infections, meaning the other diseases the ticks carry!
Yes, Lorraine Johnson's speech is a MUST READ; a very powerful presentation that she gave and organized those presenting ILADS info at the DC conference.
You have an unique way of presenting facts that touch our lyme hearts; we thank you for representing us. Keep up the good work, and more lyme articles to come! hugs
Posted by springshowers (Member # 19863) on :
Thank God for people Like Pam Weintraub
Thank you Thakn you Thank you
There are few people who can put things into the written word in a manner that can give the full message intended.
She does it so well and does it in support of all of us suffering.
Posted by Robin123 (Member # 9197) on :
You're a wonderful writer, Pam - thanks for all you're doing for us!
Posted by TX Lyme Mom (Member # 3162) on :
Pam, I hope you're planning to attend the CALDA meeting in Wash. DC (which precedes the ILADS meeting later this month) because we must to put Munchhausen's on our agenda as a future item for Lyme activism.
The current state of affairs regarding Munchhausen's by Proxy is unconscionable and inexcusable, especially as applied to parents of pediatric Lyme victims.
We've got to figure out effective counter-strategies to protect the parents of pediatric Lyme patients who are defenseless against this pseudo-scientific diagnostic label.
Hope to see you there.
Posted by JamesNYC (Member # 15793) on :
Pam,
I didn't know you were on this site! Your book was great, I've sold probably 100 copies for you.
Can you be contacted? I have a couple of questions from your book on topics you glossed over.
It's great to know you're here.
James
Posted by blackmon (Member # 1528) on :
Pam, Thank you for posting this excellently written article. You have delivered some welcome news for chronically ill people and managed to shine a light, once again, on the unethical/inhumane practices of certain MDs. Bravo!
Any idea when testing will be available and what treatment strategies might be considered?
"Truth is the daughter of time, not of authority." ~Francis Bacon
Posted by Shosty (Member # 12232) on :
Will these mean another argument against antibiotics, since this virus can cause Lyme-like symptoms and, being a virus, cannot be treated with antibiotics
I am all for anything that removes the psych. stigma for sufferers of "medically unexplained symptoms" but tend to think that the medical establishment will just coopt this and find a way to use it against patients!
Posted by LisaS (Member # 10581) on :
Love your book, "Cure Unkown", I recommend it to everyone and it is veing passed around at a medical clinic in my area, along with "Under Our Skin." Hopefully Drs will get it!
Posted by Pam Weintraub (Member # 15718) on :
Shosty --I think we can start to look at this as another possible coinfection, one that may actually be at the root for some Lyme patients who do not respond in full to antibiotics. Whenever science --REAL science is involved-- we have to embrace it. Why are so many still sick despite treatment? This could be one answer for some. I have a child who absolutely had Lyme and has Lyme --very classic-- but remains chronically fatigued; you can be sure I am going to have him tested for the new retrovirus, and should he have it, I will seek treatment for it. We cannot be afraid of new information that might help us. This does nothing, imo, to argue against abx for those who need it: But the psychiatric labels do. They bring CPS into homes. They stigmatize children in schools. They undermine Lyme patients at every turn. pw
Posted by Pam Weintraub (Member # 15718) on :
And let me add this from the perspective of a person engaged in a debate. The fact that these researchers ABSOLUTELY IGNORED the findings on the CFS retrovirus, even though they were widely known among CFS researchers, undermines their argument writ large --if CFS is taken OUT of their case for one huge underlying psych disease, well, that is a very big hole.
We are arguing against a house of cards. When I make my arguments I look at that house and wherever cards are about to topple, that is where I strike.
Moreover --if these doctors are so expert about CFS, why did they not defer to the looming announcement of the retrovirus. Did they willfully ignore it? Or are they SO OUT OF THE LOOP that they did not know about it, thus disqualifying them from any credibility in discussing it.
This large omission/error in all their statements and papers is the place where the cards are crumbling from this debaters pov. That is where I make the case.
This fight is really not ultimately about keeping the status quo with antibiotics --patients are still sick, after all. It is about legitimizing the patients so that funding can be garnered for a CURE. We need a cure, and for the chronic patients, that does not exist.pw
pw
Posted by Shosty (Member # 12232) on :
I wasn't debating anything. I just wonder what relevance this actually has for people with Lyme.
My entire family has been dealing with Lyme for almost 10 years. One of us was totally better after 3 months of antibiotics (and what if she had been limited to only 30 days?), one of us improved a little on antibiotics but not that much in 6 years, and is still sick, and one of us never experienced any improvement on antibiotics.
The cause of our symptoms could be many things, including autoimmunity (since we test positive for that).
The text of this article says 68% in one place and 98% in another, for the percentage of CFS patients testing positive for this newly discovered retrovirus. Whieh is it?
And are you now speculating that your child may suffer from the retrovirus instead of, or alongside or, Lyme?
I repeat: won't this mean that MD's will be even less likely to prescribe adequate antibiotics?
Little can be done for viruses, especially viruses that have triggered immune system changes. Doctors will just say, "Sorry, you had a virus that did this to you, and you will just have to accept it and adjust."
I am fully aware that some don't get better on antibiotics. I am one of them. I was on 6 years, off 2, and am now contemplating going back on.
But antibiotics are a big part of the puzzle for many, and did give me some improvement,so I would hate to see this news be misused.
It will also, from our experience, take many years for this news to filter down to most MD's. I am glad it got so much publicity in the news.
Posted by Robin123 (Member # 9197) on :
Shosty - AIDS is a retrovirus and there are lots of treatments for it. If you google for AIDS antiretroviral treatments, lots of inhibitor drug approaches are discussed.
If it turns out people are dealing with a retrovirus here, a similar treatment pursuit will start.
Posted by bettyg (Member # 6147) on :
breaking up for neuros like me ...
quote:Originally posted by Pam Weintraub:
Shosty --I think we can start to look at this as another possible coinfection, one that may actually be at the root for some Lyme patients who do not respond in full to antibiotics.
Whenever science --REAL science is involved-- we have to embrace it. Why are so many still sick despite treatment? This could be one answer for some.
I have a child who absolutely had Lyme and has Lyme --very classic-- but remains chronically fatigued; you can be sure I am going to have him tested for the new retrovirus, and should he have it, I will seek treatment for it.
We cannot be afraid of new information that might help us.
This does nothing, imo, to argue against abx for those who need it: But the psychiatric labels do.
They bring CPS into homes. They stigmatize children in schools.
They undermine Lyme patients at every turn. pw
Posted by Pam Weintraub (Member # 15718) on :
Shosty --It has no relevance for people who just have Lyme disease in terms of diagnosis and treatment.
But it has great relevance in the intellectual debate, and the refutation of theories that Lyme is part of a psychiatric disease that includes chronic fatigue syndrome, Gulf War syndrome, etc etc ---and THAT was the point of my article: The intellectual refutation of that theory, which I view as scientific quackery.
If that theory were to be accepted, Lyme patients would experience a severe backlash in terms of treatment and diagnosis, and the situation for them would be much worse than it is now.
In my article I am responding to the OVERALL theory of MUS and CMI --initials suggesting mere psychosomatic disorder-- for the whole range of diseases and syndromes.
Hope this helps.
Pam
Posted by Shosty (Member # 12232) on :
I don't think that the discovery that a majority of CFS patients test positive for a particular virus is going to help Lyme patient that much.
Once this study trickles down to MD's facing a patient with CFS, they may think to test for exposure to the virus (if that is possible in a regular lab).
Prejudice will continue for the most part. I can't imagine a Lyme patient explaining to their PCP that they are not crazy, but have an illness similar to CFS, that was proven to be caused by a virus. The PCP will not make the connection, and if they do, they will refuse antibiotics because viruses don't require antibiotics.
Proving that one "MUS or CMI" illness is not psychological, is not going to help patients with Lyme, fibro, Gulf War etc.
Researchers had already found immune deficiencies in CFS patients, and that did little to combat prejudice. And, the findings of the current study are not clear at all as to causation. It may be that that very immune deficiency caused the virus to thrive as a "passenger," not a driver or cause.
I think that jubilation on the part of Lyme patients is a stretch.
Posted by Renee K (Member # 21220) on :
Pam and everyone
You should be aware that MUS is being presented as a legitimate diagnosis to practicing healthcare professionals.
An RN,BSN,CPRN friend recently attended a seminar on Womens Health in Las Vegas.
MUS was the topic of an entire segment of this seminar....offered suggestions on how the provider could guide this type of patient away from seeking out multiple physician office visits and unnecessary testing for their "unexplained" multi-system symptoms more than likely caused by stress and depression.
Actually listed back pain from herniated discs as one of these symptoms caused by stress as some people had herniated discs found by accident when being tested for other things and they never had any back pain.
Stated "we all have pain with stress" but the patient with MUS dwells on this pain and imagines it to be something serious that requires multiple office visits and testing...providers were discouraged from providing this testing but encouraged to try antidepressants.
I was a high functioning RN who slowly(over 20 yrs) became too sick to work. I saw few providers until I became increasingly ill in 2004...going to the doctor was not on my list of fun things to do
I was dismissed more often than not but I kept on going, fortunately I could go to any provider without a referral with the insurance I had.
Some real physiological problems were found but still didn't explain all the symptoms and the treatment did little to help.
I then sought out an integrative MD and Lyme was found.
My point is that this diagnosis will be misused, will dismiss many more patients like me and deny them a chance to obtain a true diagnosis if they have the wrong type of insurance and can't seek help for themselves or if they still have faith in the current medical system and take their provider's word as gospel.
Very dangerous territory to be indoctrinating healthcare providers that this is a legitimate diagnosis.
Posted by coltman (Member # 21272) on :
quote:Originally posted by Robin123: Shosty - AIDS is a retrovirus and there are lots of treatments for it. If you google for AIDS antiretroviral treatments, lots of inhibitor drug approaches are discussed.
From little research(10 min) I did on the subject anti retroviral drugs have really nasty side effects profile .They mess up with your own DNA replication and transcription in a bad way (could be wrong on that part)
Posted by Keebler (Member # 12673) on :
- I'm thinking allicin might be a big help.
=====
And I just want to say THANK YOU to PAM. She could have stopped after writing "Cure Unknown" but she continues to write articles/blog about lyme and about other chronic stealth infections.
I'm so glad to see that she picked up on the news of the retrovirus connection to CFS. For DECADES, the CFIDS Association has been exploring retrovirus as a cause and it's good to see this in the news.
PAM keeps patients in mind when she writes. She is a voice for all of us who have stealth infections of all kinds - and who have been invisible or worse, deplorable, to our doctors, coworkers, friends and families.
I appreciate the dignity with which Pam writes about those with chronic infections.
Thanks again, so very much. -
Posted by Shosty (Member # 12232) on :
The medical system cannot cope with multiple unexplained symptoms. Dealing with MUS requires a long first visit, and requires that that one practitioner approach the illness(es) in an open-minded, integative way that spans specialities.
The way the system works is that we see our PCP, who then serves as a gatekeeper, and sends us to a specialist for each symptom cluster.
Patients therefore end up seeing many specialists, at which point, they are seen as, or even accused of, doctor-shopping or hypochondria or somatization or MUS or whatever, based on all these doctor appointments.
Then again, if we don't go to the appointments, we are not compliant and can be kicked out of the practice.
If you are a parent of a kid with varied, unexplained symptoms, it is even worse. If you don't go to the specialists, you can be charged with neglect, but if you do go to the specialists, you can also be charged with "neglect" (overfocus or MBP).
If the information that CFS may be caused by a virus can help with this, great, but I doubt it will have much effect. The system is broken.
Posted by bettyg (Member # 6147) on :
wow, more powerful comments since last time i visited here. bookmarking where i ended up reading saving me precious time.
Posted by Maryland Mom (Member # 2043) on :
GREAT article, Pam! One day the "flat earthers" WILL be proven wrong!
I will be looking for more info on the retroviruses you wrote about in the article. Fascinating concept.
I am also another grateful fan who loves your book. Thank you for all your hard work!! After reading your book, I used it as a source for a research paper I wrote for school (nursing school) on the existence of chronic Lyme. I was and still am amazed at the vast amount of time and research that must have gone into that project. It is extremely well written and informative, and hopefully will open some more eyes. Thank you, thank you!
![[Smile]](smile.gif)
hugs