Lyme Disease

[PlateletGal]

Has anyone ever watched that television series, Intervention ? Well I watched it for the first time last night because the young woman they had on the show was addicted to painkillers and she had a rheumatoid arthritis diagnosis at the age of 18. This was such a tragic story and half way through the show, I was already in tears. You can tell from watching this girl that she was in an incredible amount of pain. When she woke up every morning, she was so stiff that she could barely walk. Her fingers were curled and looked like claws (that caught my attention immediately). Anyway, as the show went on, they interviewed her mother and years after her daughter's diagnosis.. her mother read about lyme disease and decided to have her daughter tested for lyme. The test result ? Well it was positive. Obviously her family was thrilled, but confused about why she wasn't checked for lyme disease years earlier ? Well after the positive lyme test, their daughter refused to accept the lyme diagnosis and treatment for lyme. Why ? Because she was already addicted to painkillers and I think the lyme disease had by then affected her decision making (as well as all of the drugs she had been taking). This young woman had been taking so many painkillers, that when the producers and camera crew arrived at her apartment to film her, they found her unconscious on the floor.... glass shattered around her !

This was such a tragic story and one that I'm sure happens all of the time (at least from what I'm hearing and reading). One reason why that young woman's hands immediately caught my attention is because if lyme disease goes untreated, patients will have claw like hands and/or feet.  I'm happy to report that despite the fact that this young woman's family was a little too harsh on her (and there was a physician talking to them about how much pain she was in), this young woman decided to get treatment. At the treatment facility, they treated her lyme and rheumatoid arthritis condition (did she have both ?). They also did surgery on one of her knees.

Of course the first thing I imagined was what if this woman had been properly diagnosed and treated for lyme at the age of 18 ? And would she have the rheumatoid arthritis if she was treated for lyme ? In my opinion, I don't believe she would.

Anyhow.... I think it is frightening when I take my dog to the vet for chronic diarrhea and the veterinarian immediately wants to test my dog for lyme disease. Yet..... it took my physicians years before they even mentioned lyme as a possible diagnosis for me !  What lyme experts know is that many of their patients have been misdiagnosed and therefore, untreated (or should I say... mistreated ?)

If you haven't had testing for lyme disease, I highly recommend you do so. Not only can you have the lyme bacteria, but you can also have other bacterial infections as well. Co-infections are frequently seen in CFS and fibromyalgia patients. Unfortunately... lyme disease testing is tricky and so is testing for other bacterias. For the preferred labs.... check out: http://www.immed.org/illness/clinical_testing.html

One thing I've learned about lyme disease is a large percentage of people who have lyme, never had the classic bullseye rash after a tick bite. In addition to that.... I've read that you could have been bitten by a lyme infected tick when you were a child and not have lyme disease. Years later, you get EBV or another virus and then BAM ! Afterwards... you are very ill. Months or even years (sigh) later... you test positive for the lyme bacteria.

[bamamom02]

I saw that episode too.  I'm going to mention it to my doc and see what he thinks.

[PlateletGal]

Wow... he discusses lyme testing and studies on autism & lyme (Dr. Nicolson has talked about the same things).... pretty good information !

[PlateletGal]

Interview with lyme expert, Dr. David A. Jernigan (Hansa Center). How it affects patients... I think you'll be surprised !

http://hansacenter.com/lyme-interview.html

[VaBreeze]

This is so sad.  I just don't have words to express how I feel about the pain this young girl had to endure.

There are thoughts that it is not only the tick that can carry Lyme.  Lice and fleas that feed off of the infected animals may be carriers too.  I guess mosquitos can be tossed in there with the mix.

I am very angry about the whole issue with these illnesses.  If Lyme wasn't detected by one having a rash they would also say that was 'all in your head'.  We have a world-wide epidemic of these diseases (and yes I do feel they are all diseases) that no one seems to know krikey about and the tests they offer aren't effective in diagnosing their cause so we don't get the treatment we need.  Therefore we have MS, ALS, Lupus, RA, Lyme, FMS, CFS, Dementia, Autisum...all forms of debilitating disease relating to our central nervous system and immune system.  

God love Dr. Nicoloson and he should have the Nobel Peace Prize.  Were it not for his courage, honesty and integrity it may have been another 40 yrs. before any form of truth was known, if then.  I'm totally disgusted with those in high places who continue to push this under the rug by refusing to accept responsibility for harming others who are innocent and did nothing to deserve this fate.

[kiddthekatt]

Good afternoon all;
   I had an appointment today for xrays in my knees, hands, lower back, elbows..............I was a totally worn out when they finished with me. While I was there I was speaking to one of the technicians and we were talking about Fibro and other diseases including Lyme. She asked me if I had been tested for Lyme and I told her that I had been several times.

   Well, she said that if she were in my shoes she would have them test me again. I was surprised when she said that. Come to find out she had been having treatments for Lyme and she was almost finished up. She also told me that I showed every symptom that she had. Ten she asked me if I had ever been hunting. Well, yes I have, but it has been a long time. I told her that we had lived in West Texas until 1980 when we moved to Houston. And yes, ticks were bad in West Texas, real bad. So, when I go in next Monday I'm going to ask my doc for another Lyme test. We'll see what happens.

   Thank you Plateletgal for this post, it sure helps to know that we have such wonderful CLs.

gentle hugs
Angel

[PlateletGal]

Well according to Nicolson's website (at least the way I understand it) many RA folks also have lyme:

Lyme Borrelia Test (CPT: 86617)—Borrelia burgdorferi (Lyme Disease) by Western Blot analysis. Justification: Many CFS, FMS and RA patients have this systemic infection (diagnosed as Lyme Disease) along with other co-infection(s).

http://www.immed.org/illness/clinical_testing.html

The good news is antibiotics not only treat the lyme bacteria, but mycoplasma (found in many RA patients) as well ! So antibiotic therapy should have solved most of her lyme symptoms and even her RA symptoms.

Of course... she probably still has health problems, thanks to her late diagnosis and misdiagnosis.

[patsy10]

That's a very sad story.  I would like to have seen that program.  I  bet she did not have RA.  My neighbor had lyme disease and initially they were thinking it was RA.  She had positive lyme tests, was treated and it all went away.

[PlateletGal]

Yes, that is the one ! You are right... her family was very judgmental and harsh. They saw their daughter as a "drug addict". I was so happy when that physician explained to them how much pain their daughter was in and that she had no choice but to take these medications. He told them that the best time for their daughter was when she was asleep.... so she couldn't feel the pain.

I needed several kleenex during that episode.

And as far as that rheumatologist you mentioned... what a !*$*#@*!.  It should be a well known fact to physicians that ticks infect animals... INCLUDING BIRDS that migrate across the U.S.

[SOONERMOM]

I saw this about a year ago.  She was from Tulsa, Oklahoma, right??  This is what is so sickening about the denial of lyme disease.   Her life was completely destroyed.  Her family was harsh.  I wonder what  ever happened to her after they sought help for her?

It wouldn't matter if you had 20 bullseye rashes and all 10 bands positive on a WB in my state.  They would still tell you that you didn't have lyme disease.  It just seems criminal to me.  How much is someone's life worth?

I was part of an article about lyme disease in the Tulsa World last year.  A local rheumatologist responded to it in a letter to the editor saying that "lyme doesn't live in our climate".  

This is why I drive out of state for treatment!