posted
I personally think post lyme syndrome is a load of nonsense. Have you checked and treated for coinfections, heavy metals, viruses, etc?
Posts: 263 | From UK | Registered: Mar 2006
| IP: Logged |
quote:Originally posted by Chocolat: Considered a treatment failure------now LLMD says Post Lyme---more complications-
Then you need a new LLMD. No respectable LLMD believes in PLS!
Maybe you were bitten again?? Have you been treated for all coinfections? .. Especially babesia?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Post Lyme Syndrome does not exist.
Except in the minds of doctors who follow the substandard of care set out by insurance companies who want to pay the very least for treatment.
I was bit, got rash, was diagnosed right away by PCP and seconded by local Rheumie, treated (under) for 30 days and then told anything I had after I would have to live with, that I now had "Post Lyme Syndrome."
I believed it for a year and didn't know any better and wasted a whole year of my life getting sicker and sicker.
They rediagnosed me, after I accumulated various syndromes that year, "progressive multi-system neurological disease TRIGGERED by post-Lyme syndrome".
In other words, progressive neuro Lyme disease.
With no treatment offered.
I had one local Rheumie tell me she KNEW I had active Lyme but wouldn't treat me because she didn't want to get in trouble. Thanks.
They were going to let me die. Rather than go against the current treatment guidelines. Which are limited cheap oral antibiotics.
My PCP took pity on me finally when I began to have problems walking and told me I could have an openened script for any cheap oral I wanted.
But orals did nothing anymore. I needed IV.
Finally I found an LLMD and got 9 months of IV Rocephin.
6 months of nothing- then 3 months of miracles-
the ability to walk.
the ability to talk without slurring.
the ability to not be in chronic pain.
And for the last 6+ years I have been at 99.9% thank goodness- and loving life again-
and if I hadn't found an LLMD I would be dead. I am not one of those non-progressing chronics. I was getting worse and worse neuro symptoms very quickly-
THANK GOD FOR IV ROCEPHIN!!*)*)!
Welcome.
Post Lyme Syndrome is a crock!!!!!
-------------------- 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
Thanks to all-----------no wonder so thrown by this---
Have been dealing with chronic, late stage Lyme for years on end. Couldn't understand with all the knowledge I have collected why I had never heard of Post Lyme Syndrome.
I'll buy the crock stuff-----------
But what does one do when can't take abx. anymore? 5 years non-stop----------2 LLMD's have said got to get off----------addressing metals now-oral chelation because due to hyperparathyroidism and hypercalcimia can't do IV chelation.
Cowden or Bruhner's protocol--considering------------but my alternative/complementary docs and naturapath (sp) say for now too weak to do anything---------------
Feel back at square one-------------was having average of 10-15 good days a month-now 0 days.
Scared and confused------
If any of you have read my posts a few weeks ago-----------was told IVIG's only hope for a turn around.
After much extreme fear about them have finally decided to do them--------sept. 1st-
At this point will do anything.
Never dreamed I would crash down this far.
Any suggestions at all ? Don't want to live like this------full blown Lyme all over again??
posted
Sorry you are so sick right now. My daughter is in the same boat also and we are trying to decide which course to take and pick a new doctor with fresh eyes.
I don't know if you take vitamin c, but I think it helps. Before my daughter was diagnosed, she had a series of IVs that were meyers cocktails. She felt really good after them. I have not been able to find anyone else to repeat them--the original doctor moved to a more restrictive practice. The times she has done the best, she has taken 8,000 to 12,000 mgs a day orally--more if I could get her to take it.
You take vitamin c to bowel tolerance. I have started to try to get her to increase her vitamin c again. She gets tired of taking pills.
I usually divide the doses into 4 pills at a time and in between other meds.
There was a doctor before Pauling who treated everything with vitamin c. He added other meds and/or supplements, but the c was the core.
You can read about him at a vitiman c website.
Posts: 177 | From God's Grace | Registered: Apr 2007
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Are you doing anything to help build up your system? Lyme and abx both reek havoc on our bodies. I learned the hard way.
I started working with a doctor who treats me for autonomic neuropathy. Many people with Lyme have problems with their autonomic nervous system because of years of illness.
Treating Lyme alone won't get rid of the symptoms. You also need to take steps to reverse the damage done to your body.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
Although I am against PLS because of how it is used financially and politically, I think lyme wrecks havoc on the organs, tissues, cells, glia ... Since it mimicks neurodegenerative disorders, that means it kills cells. When cells are dead, the body does notwork right.
Who is to say that there is not an entire cascade of problems, including autoimmune disorders, triggered by Lyme?
I think the idea of Bug >>>>> take antibiotics >>>>> Kill the Bug >>>>> Good you are Done! is very simplistic and unrealistic.
This is a clever, parasitic, cunning and baffling disease.
I am going to the LDA and ILADS conference and it will be interesting to see what they have to say. Have you read Fallon's latest statements on his webpage? Even he is wondering . . . what is really going on.
But I still agree with most of the other posts, in that PLS can just be an excuse to stop treating.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
| IP: Logged |
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by cave76: ****when can't take abx. anymore? 5 years non-stop----------2 LLMD's have said got to get off--------****
Can you tell us why 2 llmds said you had to get off abx?
Did they mean ALL abx or just the ones your were on.
5 years isn't outrageously long to be on abx.
What Cave said.
Also, how recently did you treat? And with what?
And what's your coinfection status?
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
| 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!
Printer-friendly view of this topic