This is discrimination at it's finest. And, they know darn well why they are discriminating too. It's the almighty bottom dollar they are after and they don't really care about wheter or not we get better. You know it, I know it and now what to do?????
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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posted
What kills me is that antibiotics aren't that super expensive, IMO.
Compared to some of the chemo drugs out there, Lyme is darn cheap! So what if the therapy lasts for a year or more? TB patients take antibiotics for a at least a year...
Lyme is a qulaity of life issue as well as life and death for some people.
Plus, there is research that HBOT is useful for Lyme (amongst other diseases and medical problems) but do insurance co.s pay for HBOT for Lyme? Noooooo!
I think that biophoton therapy will one day be covered by insurance for cancer therapy but for Lyme? Noooo!
They'd have to admit Lyme is more than a "hard to get; easy to cure " problem first.
-------------------- Diagnosed with :yme and mycoplasma pneumonia Aug 08. Treating with Doxy and Ceftin ever since. 15 sessions in hyperbaric o2 chamber Posts: 183 | From all around | Registered: Jul 2008
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Funny thing is that the antibiotics are so much cheaper than all the other stuff I used prior to my dx. I had been to about 20 different doctors and had been through physical therapy and tried different things.
I know the long term abx can add up, but if I had not found out I had Lyme, that searching could have gone on forever.
What really irks me is the quality of life thing. Noone pays for the hyperbaric treatments, you see if they admitted that this could help and we deserved it, then they(insurance would have to cover it)...So they would rather we suffer all because of the bottom line.
I also wonder if big pharm is working on stuff and they don't want us to get well on cheap abx because then they would not be able to sell us what's coming down the pike next. I know that may sound very conspiracy theory, but.....
Elizabeth
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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bettyg
Unregistered
posted
did you all read the article on lyme controversy written by IDSA man? SOUND OFF THERE!!!
medical examiner: Health and medicine explained. Still in the Lyme Light Politicians and Hollywood enter the debate over "chronic Lyme disease." By Kent Sepkowitz Posted Tuesday, Sept. 30, 2008, at 6:35 AM ET Adult deer tick
i had this all BROKEN UP but when copying it went back to solid block text. i'll let you read it from SITE INSTEAD where you can REPLY TO ITS MANY COMMENTS .... please reply! betty
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
According to IDSA, it is not discriminatory because you do not have lyme after 4 weeks of doxy. Period. If it does not exist, then you cannot discriminate!
The link to Slate that betty posted has several heated exchanges between Phil Baker and Dr. R.S.
One interesting item was a poster named rsmdpa. He/she stated that chronic lyme is not neuroborreliosis........he has his own definition of chronic lyme as muscle aches and fatigue (and one other thing).
So folks, the use of chronic lyme is possibly passe now....we have neuroborreliosis. And of course, the Neurologists get to handle that one with the same 4-6 weeks. Instant cure.
So there are 2 separate diseases now caused by a single organism, Borrelia burdorferi:
lyme of knee and rash, neuroborreliosis, and of course, the post 4 week chronic lyme syndrome....waiting for the post neuroborelliosis syndrome to blossom here.
All based in one organism. If you have knee spirochetes, they must be different than brain spirochetes. So if you have both as symptoms, then you have 2 spirochete types in you! Fascinating logic.
There are some good discussions, and the usual confusion and narrow minded oversight from P.Baker. Gads.
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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I wonder though, if one feels better while on long term abx if it is discrimination to withold these treatments as this is allowing unecessary pain and suffering? It's inhumane.
I mean what other "disease" allows its patients to tolerate unecesarry pain and suffering? when patient after patient can testify that long term abx for some really help.
And, wouldn't they want us to help cure the symptoms or at the least throw them into remission instead of masking them?
It's very frustrating.
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
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northstar
Frequent Contributor (1K+ posts)
Member # 7911
posted
Lies asked:
quote: And, wouldn't they want us to help cure the symptoms or at the least throw them into remission instead of masking them?
Their position is that there is no infection after 4-6 weeks. Then they throw the patient into the post lyme syndrome category, and there is no such entity as chronic lyme.
To them, you are cured. (not remission, since that would acknowledge relapsing type infection, and would contradict their view point that spirochetes plus symptoms are just a coincidence once one has been treated.
To me, it is wrong. They do not accept the clinical experience and observations. They only accept their own data (somebody stated it was only 2% of available studies). Then they bring up the Klempner study and evidence based medicine as the Only Truth.
Do they believe themselves? I dont know. People will lie to save face, to earn money, position, ego, etc.
When people here talk of chronic lyme, they speak of treatment resistance, problems with finding appropriate abx, etc., all centered on continuing infection. To them (IDSA), the problems are either just a learn to live with it syndrome or another type of infection or disabling condition.
I'm pretty sure posters here would disagree with that interpretation, especially when there is an abx change, and they have a "herx" just like they felt before treatment.
It boggles the reasonable mind that suddenly a new disease can pop up after months and months of treatment, and amazingly it causes the same symptoms as lyme. To them, it is not lyme though.
Yes, I think they would deceive.
Check out the "colorful" exchanges (!) on the comments section of the Slate article!
Northstar
Posts: 1331 | From hither and yonder | Registered: Sep 2005
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We CHRONIC LYME patients want ALL drs. to work together!
by bettyg iowa 10/07/2008, 3:04 AM #
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This is my 1st time here, so I'll learn what this board is like and how it posts the hard way! uffda
It's taken several hours but I finally made it thru all the replies to this article above! Whew; for a NEURO lyme patient; it was really tough on me!!
Please to all posting on this CHRONIC LYME issues especially you DOCTORS, please have SHORT paragraphs so we can comprehend and read them vs. long-drawn out medical thesis' like posts and those BIG LONG WORDS we non-medical folks have no knowledge of. Thank you!
Please DOUBLE space each paragraph so our neuro minds can comprehend...big thanks! xox
To RMAVES,
please stop using ALL CAPS SHOUTING at us all; it's rude in the pc world to use all caps for full sentences!!
Besides for neuro lyme folks like me, it gives me migraines plus using BOLD for long quoted paragraphs instead of using " " and be normal print to read!!
For once, both sides...think about the PATIENTS; we desparately want help to get into remission for QUALITY of life left!
I've had chronic lyme for 38.5 years; MISDIAGNOSED for 34 years by 40-50 drs/specialists!! I believed every dr. that had a new diagnosis!!
Why was I the one to keep investigating why I wasn't getting better and only worse to eventually in July 2004, "you have LYME disease"!
Why must we be forced to go OUT OF STATE to get treatment by a lyme literate md, LLMD? Iowa doesn't have any full-time llmds!
We do have some learning but will only take 1 chronic lyme patient per week up to 20 max!
Please work TOGETHER with our chronic lyme literate mds, and let's get our LYME DISEASE bills, HR 741 and S 1708, placed on congress' AGENDA and to get both sides out on the floor.
Our lyme bills are about establishing a lyme disease task force, educating all, and $100,000,000 in 5 years to do this with!
We chronic lyme patients just can NOT understand why the IDSA refuses to support and wants to HURT us more especially since we have to PAY OUT OF POCKET for our appts., treatments, meds, labs, etc. since the CDC goes by the 06 idsa lyme guidelines!
That is pure HOG WASH! Now it's time to loff off here; I'm worn out just from reading all replies and trying to get signed on her to have my own post!
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bettyg
Unregistered
posted
ewl, another idsa dr. started a post, and i had problems posting there so only have of my post got posted!! darn.
HOG WASH! This is a publc health crisis that is endemic and has been shoved under the rug by idsa/cdc, etc!
See www.LymeMemorial.org site for the names of all that we are aware of who died from chronic lyme and/or co-infections!
" I'm more worried about the millions of uninsured patients who can develop fatal diseases than those that can get a nonfatal, usually treatable disease that may become chronic occasionally."
Don't you realize that majority of us have lost our jobs, our HEALTH INSURANCE coverage, resulted in a divorce and loss of your child to your spouse, your home and bankruptcy due to the overwhelming costs of our lyme disease appts. and treatments plus traveling out of state to get a LYME LITERATE MD, LLMD ??
posted
...this is surely one of those topics that gets my adrenaline going...
so i suppose all i will say is: Karma...
~Green~
ps. talking about western blotting, ELISA, etc in one of my classes.. interesting enough, lyme disease has been 'mentioned' twice. in 2 other classes, it has also been mentioned ..thought i would add in during class that western is much better than elisa.
anyway, yea. karma.
-------------------- ...trying to be the coffee bean, not the egg. Posts: 420 | From East Coast | Registered: Jun 2008
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