posted
Well, I feel compelled after reading the last post about someone else being depressed, and another on that post questioning their lyme diagnosis to put in my 2 cents about the CDC.
D*mn them. Yes, that's right. Every day of my life I question whether or not I even have lyme because they put up some arbitrary "surveillance criteria" for lyme that most doctors (read as ducks) use to lead us into a state of chronic lyme. The LLMDs that truely understand the true meaning of the CDC's criteria are few and far between. So we believe the false negatives we get from the poor labs that do our first testing because we don't know any better...we trust our doctors.
So do I blame them (the CDC) for my lyme, no. Do I blame them for it going undiagnosed for this long, yes. Do I blame them for the ignorance that persists out there...yes. It is their job to get the word out. If I had known 2 years ago my 1st test was less accurate than me flipping a coin that might have made a difference.
And I do blame them for making me and all you others question your diagnosis, even when you finally find that LLMD that know what he or she is talking about.
Every day even though 3 LLMDs have told me that based on my testing they believe I have lyme, multitudes of lyme symptoms, and an irregular SPECT, I still question if I even have it...why, because I don't have that CDC positive Western Blot. Mine is inderminate with many specific bands.
Anyhow, I just needed to vent because I know lots of us are sitting here wondering am I chasing the right illness. If I'm going to put myself through all of this I'd like to know that I am really chasing the right disease.
I know the CDC lowering their criteria isn't going to "fix" the problem of not having a better test, but they need to re-evaluate their criteria, and if for nothing else, to help us with the battles we face every day with insurance.
There ya go. My 2 cents. Take it or leave it.
jloisu
-------------------- jloisu Posts: 197 | From Seeing Lyme Green in Iowa | Registered: Jun 2005
| IP: Logged |
quote:Originally posted by jloisu: I know the CDC lowering their criteria isn't going to "fix" the problem of not having a better test, but they need to re-evaluate their criteria, and if for nothing else, to help us with the battles we face every day with insurance.
AMEN to every single thing you said. It is a crime and a sin!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
I am in complete agreement as I've had this going on for over 25 years. First was told I had Polymyalgia Rheumatica (based on high sed rate) then came the Fibromyalgia dx (based on the sore muscles) then told I had Rheumatoid Arthritis (positive RA test) then 3 years ago when I had a brain MRI it was "definite MS" and "You've probably had it over 25 years."
I was treated with Interferon 1a shots (for the MS) until my immune system crashed last August. I've had 5 UTI's since then and still taking an antibiotic (Levaquin) for it. By being directed to this board I was given the name of a LLMD who tested and said I have Lyme and he's treating with Samento Cat's Claw, multi-vitamins & minerals, and some homeopathics.
Because of all the federal rules and regulations, the CDC, the FDA, our conventional doctors will NOT think outside the BOX and look for the real cause of all these problems. They are just content to keep treating the symptoms forever! Gabriella Posts: 58 | From Georgia | Registered: Sep 2005
| IP: Logged |
quote:Originally posted by Gabriella7: I was given the name of a LLMD who tested and said I have Lyme and he's treating with Samento Cat's Claw, multi-vitamins & minerals, and some homeopathics.
You're not interested in taking abx??
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
I'll tell you another mystery that I don't understand. I received my postive lyme diagnosis (using Igenex) through the Fibromyalgia & Fatigue Center in Atlanta. They also tested me for viruses and I have 3 of them!!!
My doctor told me we would have to address the lyme first and foremost and then the viruses. She asked me if I had heard of transfer factors which I have on the Immunesupport forum. I'm assuming those are for the viruses.
Why didn't any of my old doctors ever check me for these years ago? I just don't get it. Now my immune system is a mess after all these years. But I am on the mend with bio-identical hormones plus the lyme treatment.
Like you guys, its aggrevating and I sure hope there's a breakthrough in the medical field soon.
quote:Originally posted by karatelady: Why didn't any of my old doctors ever check me for these years ago? I just don't get it. Now my immune system is a mess after all these years.
I've had Lyme for at least 46 yrs. I was dxd with FM 25 yrs ago. I was dxd with Lyme 5 yrs ago purely by accident [actually divine intervention]. As far as I know, I was never tested for Lyme until 5 yrs ago.
PS....hormone treatment has helped me too!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
posted
I'm confused about the CDC survellience bloodwork. That's all my doctors will do on me...and when those come back within range they say its not possible to have lyme and if I did, it would show up on that test. AND I asked how many bands I had and which ones and they said they didn't know and it didn't matter...Turns out those weren't even sent back with my lab results-they don't get them. At the bottem of the lab page with my results it does say it is to be used for survellience purposes, is not a diagnostic tool, and lyme should be based on a clinical diagnosis. Yet the doctors don't do that and we go on suffereing...it baffles me, truly baffles me.
Posts: 114 | From USA | Registered: Sep 2005
| IP: Logged |
posted
TuTu, I'm taking Levaquin, a very strong antibiotic, and that in addition to the Samento Cat's Claw is causing all kinds of weirdo symptoms. So, no I'm not really interested in any more abx's right at the moment.
dontlikeliver
Frequent Contributor (1K+ posts)
Member # 4749
posted
Levaquin does not address Lyme disease.
Posts: 2824 | From The Back of Beyond | Registered: Oct 2003
| IP: Logged |
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
I have been given levaquin several times in my battle...sometimes for bronchial/pneumonia other times for cellulitis and at least once for lyme...
I don't like it cuz of the tendonitis I experience because it's a quinalone abx and they can have that affect on the body.....
Hey TU TU divine intervention was how I found out what I had also......hmmmmmm pretty neat!
Yeah the CDC sucks big.....zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
| IP: Logged |
posted
Dont even get me started on the CDC. They dont have a clue and are a huge part of the problem.
There are thousands of people in our country who can not work due to CFIDS/FM. These people are costing the country billions every year in disability, medicaid/medicare and the CDC will not even make Dr's report cases. I wonder where the highest incidense of CFIDS/FM is. We will never know, my guess would be where ever lyme is prevalent. All we can do is guess. To them FM is caused by accidents, CFIDS by flu-like virus and both by over working and stress. Give me a ****ing break if that were true the whole country would be ill!
I have come to relize that the #1 goal of the CDC is to destroy life. They know everything there is to know about anthrax and any other biological weapon that they harbour. People have been suffering from lyme since time started and did not even get a name till 1975. Fleas and mosquitos have killed millions of people and still do, why is it so hard for them to realize that ticks can be harmfull.
I have been on abx for 4 months, IV for 2 and have not felt any differant. If anything I should be skepticle but I know that whatever it is I have came from an external parasite.
Posts: 208 | From Greenville SC USA | Registered: May 2005
| IP: Logged |
posted
Hi, I was prescribed Levaquin for a UTI, but I have read some posts where patients are taking it for the co-infections possibly. Tony, I've had problems with the elbow tendonitis since being on Cipro 3 times and now the 1st cousin.
I also read that Cat's Claw which I'm also taking prescribed for the Lyme is in the same family so I have a double whammy. You don't want to hear my rant and ravings on what happened with the Swine flu shots the CDC highly recommended we all line up for!
Now our government is getting us all hiped up about the Avian flu and getting vacinated. NO Thanks, but I was working for the federal government when I got the Swine flu shot and I've been sick every since! I've also read that you can get lyme from the mosquitos, etc. Gabriella Posts: 58 | From Georgia | Registered: Sep 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!
![[rant]](graemlins/rant.gif)
![[bonk]](graemlins/bonk.gif)
Gabriella ![[group hug]](graemlins/grouphug.gif)
![[Frown]](frown.gif)
Printer-friendly view of this topic