posted
Chronic Lyme and "post lyme" are the same thing. The difference is that LLMD's believe it can be helped [or cured] by long term abx, and ignorant ID Ducks think there's nothing that can be done about it.
Which course of action would YOU take??
Why are you wasting time and money on an ID "dr?"
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
I thought the two terms were significantly different. Post Lyme means you can have symptoms but it's no use treating it because the disease isn't there. It's just the residual effects of the disease.
Chronic Lyme, as I understand it, is adamantly opposed. IDSA says there is no such thing. This is why their guidelines and insurance companies who follow those guidelines will not approve or pay for treatment.
Symantecs (sp) is at the heart of the issue. We need to keep the term Chronic lyme as opposed to Post Lyme syndrome. It is significant in medical circles.
This is my understanding.
Kayda
Posts: 582 | From midwest | Registered: Nov 2006
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
The terms are significantly different, but in a way, they are the same thing. A doctor who diagnoses Post Lyme Syndrome does not believe in Chronic Lyme. While the LLMDs don't believe in Post Lyme Syndrome.
Post Lyme Syndrome is a term that was created by the Infectious Diseases Society of America (IDSA). According to IDSA guidelines, if you continue to have symptoms after 4 weeks of antibiotic therapy, you have Post Lyme Syndrome.
It is called Post Lyme because the guidelines claim the infection cannot continue after 4 weeks of antibiotics. They claim you are cured just because you've had 4 or more weeks of antibiotics.
Under the Post Lyme Syndrome diagnosis, there is no treatment besides treating symptoms. And a doctor who diagnoses Post Lyme Syndrome would never consider the possibility that you have a current infection.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
There is no such thing as "post-Lyme-Syndrome"
If you still have symptoms you still have Lyme Disease.
Most ID docs do not believe lyme is an on going infection. Many patients who have gotten better & or cured from on going treatment would beg to differ-myself included. They deny the latest research because it is in their best interests & in the interest of insurance companys as well.
I would run like hello from this doctor & find a LLMD. Lyme Disease remains a clinical diagnosis. The blood tests for lyme are inaccurate & that goes for the co-infections as well.
quote:Originally posted by Aniek: The terms are significantly different, but in a way, they are the same thing. A doctor who diagnoses Post Lyme Syndrome does not believe in Chronic Lyme. While the LLMDs don't believe in Post Lyme Syndrome.
Exactly.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
Is there any way you can pay for a REAL doctor??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
hope4Better
Will WV medicade pay for out of state care? Can you travel out of state?
I had to travel out of state-there are no LLMDs in my state. I also had to borrow money from my family. It was tough going but I had to do it.
I hope you can find away to get treatmnet. The system really stinks. But try to remian hopeful as your name imply's. Where there's a will theres a way.
hang in there Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
posted
The post lyme syndrome is a hypothesis but I have seen no scientific evidence to back up its existance.
Whereas there are scientific papers (22 at my last count) where borrelia has been cultured (ie a direct test rather than an antibody test) from solid tissue in people who have already been on protracted courses of abx. To me, this proves that protracted symptoms are likely to be due to persistent lyme infection.
I think a change in mainstream medical opinion will only come after a new test to detect borrelia directly is developed. In the meantime, a decent randomly controlled trial showing benefits of long term abx would be a big boost. Chiz
Posts: 67 | From UK | Registered: Oct 2006
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by chiz: Whereas there are scientific papers (22 at my last count) where borrelia has been cultured (ie a direct test rather than an antibody test) from solid tissue in people who have already been on protracted courses of abx.
What SHE said!
ID doctors refuse to acknowledge continuing infection.
In fact, the new IDSA Guidelines state that ALL of these studies demonstrating the persistence of the bacteria are flawed, and are apparently the result of "cross contamination" in the laboratory.
It would not matter to the IDSA if there were 500 studies proving the lyme bacteria capable of withstanding antibiotics. They are uninterested in science.
One is left to wonder whether they can read.
Please find a way to get help from either a lyme literate doctor or a doctor who will follow the ILADS guidelines.
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| IP: Logged |
posted
I told my Physician he has , "POST PHYSICIAN SYNDROME" He still thinks he's a doctor.
Posts: 789 | From CT, | Registered: Jun 2006
| IP: Logged |
quote:Originally posted by Al: I told my Physician he has , "POST PHYSICIAN SYNDROME" He still thinks he's a doctor.
OHHHH!!! That is PRICELESS!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
WildCondor
Unregistered
posted
There is no such thing as post Lyme syndrome. It's all bs, and the ID docks love to make that up. Stay away from ID ducks, they are terrible and anti-Lyme. You either have an infection or you don't, and the testing is poor. Likely, your treatment was inadequate, and you still have Lyme. It is extremely difficult to erradicate all the bacteria. Lyme is a clinical diagnosis. Stay away from the ducks! If you need a doc in your area, email me, I'll help you.
IP: Logged |
hardynaka
Frequent Contributor (1K+ posts)
Member # 8099
posted
Read wikipedia (lyme disease).
You'll get an idea of the ideological wars and to which camp your doctor belongs...
My Swiss lyme specialist also put me in that 'diagnosis' (more to say, lack of diagnosis). Also the Belgian tropical disease specialists. Don't believe them. I didn't.
My post-lyme syndrome needed more than a year of continuous intensive treatment, loads of herbs/ supps/ other treatments to get under control. It was definitively no post-lyme.
Posts: 1086 | From Switzerland | Registered: Oct 2005
| IP: Logged |
posted
ok so say, i dont believe them. i know i have chronic lyme and coinfections...
but for now, with medicaid, its good to have a sucky doc then none at all. in my case anyway, im in college, 22, no family..not a lot of options.
but say i go along with it just to see if i can get help for some symptoms. along with doing the bruhner protocol..
what would they help me with?? like muscle relaxers? or antidepressents??
how could i make my case, and work with what i have right now???
thats the question i was trying to get at. i think.
-------------------- If Your Going Through Hell, Keep Going... Posts: 99 | From Shepherdstown, WV | Registered: Sep 2006
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
It depends on the doctor and your symptoms. The ID doc might refer you to other doctors to treat the symptoms, rather than treating them yourselves.
Antidepressants and anti-anxiety meds are pretty easy to get prescribed if you need them.
Good pain control is harder, particularly if you are on Medicaid. You need to find a doctor who really understands pain treatment.
When you describe your pain, make sure it is high on the pain scale. Don't go in saying it's a 4 or 5 out of 10. If the pain is severe, then tell them.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
You wrote: >>Good pain control is harder, particularly if you are on Medicaid. You need to find a doctor who really understands pain treatment.
I was wondering about this statement. Is it actually harder to get pain med on Medicaid? If so, why? can you elaborate?
Thanks, Kayda
Posts: 582 | From midwest | Registered: Nov 2006
| IP: Logged |
hardynaka
Frequent Contributor (1K+ posts)
Member # 8099
posted
Hope4 better,
Buy Buhner's book (only 15-20 dollars), try to start with basic protocol slow (not very expensive).
Many got loads of improvement very fast with herbs, myself included. Not a promise for cure, but a help. Go to Buhner forum in yahoo, you'll get plenty of help there too.
When you start feeling better, you'll be able to continue looking for professional help.
That's what I did. Not for the same reasons as yours, but because I couldn't find anyone to treat me, they all said I got this damm post-lyme and left me without ANY treatment.
After I was on herbs, I found 2 wonderful practioners who helped me with herbs and alternative treatments.
Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
| IP: Logged |
Cobweb
Unregistered
posted
quote:Originally posted by Al: I told my Physician he has , "POST PHYSICIAN SYNDROME" He still thinks he's a doctor.
posted
Term that a lazy uncareing doctor uses.See doctors know what lyme is,but most dont want to treat you or even see you again,because lyme is so multi-systemic.So they tell you that so you go searching somewhere else and leave them alone.
Posts: 510 | From NEVERLAND.USA | Registered: Jul 2005
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Hey- *I* have Post-Lyme Syndrome*)!!!!!!!!
When I got bitten and had a rash at the bite site, my local doctor tested me and I came up positive for Lyme disease- the only person I know who has tested positive through UNILAB!!! So he diagnosed me and sent me to our local LYME EXPERT-a Rheumie doc!!!
Rheumie Doc seconded the Lyme diagnosis and gave me ONE MONTH of oral Doxy!!!!!!!! 200 mg a day.. AMAZINGLY, at the end of this I was ALMOST well- I had just a TINY bit of symptoms left. On my follow-up appointment I BEGGED him for just ONE more week of Doxy!!! It had been magical.
Rheumie Doc said, "Look, you HAVE been treated for Lyme disease. WHatever is left is Post-Lyme Syndrome. That is untreatable."
I said, "But I am ALMOST well can't I just have ONE more week of Doxy?"
He said, "No."
So there I was with Post-Lyme Syndrome and I had no idea that LLMDs EXISTED!!!! Or LymeNet!!! Or HOPE!!! Because although at that exact point I had minimal symptoms, from that point on I got WORSE again, until I was WAY worse then when I had gone to the docs for help in the first place- and my PCP had to refer me to ANOTHER Rheumie who specialized in fibromyalgia and CFS which I developed shortly- and THEN I began having neuro problems and so my Rheumie said she was going to refer me to a neurologist because I had developed...
"a progressive multi-system neurological disease triggered by Post-Lyme Syndrome."
in other words, as was apparent to me, CHRONIC PROGRESSIVE LYME DISEASE~!!!!!!!!!!!!!!!!
THANK GOD FOR MY LLMD!!!
I had no idea there was treatment for my Post Lyme Syndrome. THIS Rheumie told me that she couldn't treat Post-Lyme with more abx "because of politics" which baffled me. I didn't know about the whole situation. When I pressed her, explaining that abx had worked so well before, she said she KNEW I had Lyme but again, couldn't treat me because of the politics.
My PCP at this time said he had been wrong not to give me more Doxy because the first Rheumie had told him that more was "dangerous". SO he said he would give me a script for any abx I wanted. I went back on Doxy- but you know what>? IT DID NOTHING> my bacterial load was too high. IT DID NOTHING!!!!!!!!!!!!!!!!!!!!!!
THANK GOD I had a friend who was a nurse who was processing a patient file one day and saw "HAD chronic Lyme disease" 12 years before!!!! She asked her, "How did you get rid of it?" The patient said,
"I saw a doctor in SF named Dr. S!"
But it had been 12 YEARS BEFORE!!! Was there any hope>? I dind't even callt he SF directory, I was SO DEPRESSED- AND that week the LDF was putting on a Lyme lecture with Dr. Lionetti (I am writing his name because he no longer needs to be protected- has been prosecuted already). SO that week I wnt to the lecture and sitting next to me was this nice woman named Lorie.
"Where did you get it>?" she asked me.
"In APtos." I said.
"I live on Trout Gulch!" she said/
She lived 7 blocks away from me!!!!!!!!!!!!!!! We started the local support group that next month together...
And the man sitting directly in front of me was a wonderful, sweet, angel doctor whose name was...
... Dr. S!!!!!!!!!!!!!! from SF!!!!!
"Dr. S, would you be my doctor?" I asked him tremulously.
"Of course!" he said. He had hardly any Lyme patients then.
And so I was saved- from Post Lyme Syndrome, otherwise known as chronic progressive Lyme disease.
I was no longer responsive to orals and had to go on IV when I began to lose the ability to walk and to go into dementia-
And now I only have a brief twinge in my left knee once a month!@! And it has been like that for 6 years since IV!!!!!!!!!!
THANK GOD I WAS NOT LEFT TO SUFFER AND DIE~!!!
Doctors who diagnose Post Lyme are MURDERERS. MURDERERS!!!!!!!
That one Rheumie who told me, when i began to go way neuro, she said, "It looks like you are devloping some neurolgical disease like MS or Parkinsons or ALS- but sometimes it takes years for these diseases to DEFINE themselves." And I said plaintively, "But it started with Lyme- I don't understand why it's not just progressive Lyme disease." and she said, "Sarah, I kNOW YOU HAVE LYME BUT I WON'T TREAT YOU- it's too political."
She I hate. She KNEW. The others were IDIOTS and believed the BS they were spouting- BUT SHE KNEW!!!!!!!!! SHE KNEW!!!
AGH!!! AGH!!!
Memories..
YES, POST LYME SYNDROM is bull*!&^!. POst Lyme Syndrome is murder-
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
posted
does anyone know if i can go to pain management with west va medicaid??
my PCP is sending me to a DO.
does anyone know what she can do for me??
and i got a massage yesterday and the theapist said it took 2 hours just to begin to get to the knots in my back, arms and at the base of my neck..
what i thought was my lumpy skull was actually muscles that has knotted themselves up so tightly at the base of my skull..that it actually felt like bone..
im scared and in a lot of pain. i been giving pain meds by my doc but they dont seem to be doing the trick and i cant afford to get a message every week.
anyone have good advice, i dont want to be doped i have college i just might need something longer lasting than percocet 5 mg.
could the DO help my pain??
-------------------- If Your Going Through Hell, Keep Going... Posts: 99 | From Shepherdstown, WV | Registered: Sep 2006
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
quote:Originally posted by Kayda:
I was wondering about this statement. Is it actually harder to get pain med on Medicaid? If so, why? can you elaborate?
A lot of good pain specialists don't take insurance or Medicaid. At least in my experience.
The question is not just getting a pain med, it's finding a doctor who will work with you to find the right combination of medication and other therapies, like physical therapy.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
![[Smile]](smile.gif)
![[lol]](graemlins/lol.gif)
Printer-friendly view of this topic