Anyone catch 'mystery diagnosis' — LYME

[orchid]

I just saw one of those “mystery diagnosis” shows the other day. This poor girl was fine one day and suffering from meningitis the next. Even after they treated her for that, she continued to suffer with all kinds of symptoms, horrible joint pains, etc and they finally figured out it was lyme.

The doctors kept telling her “you're just a pretty girl looking for attention.” After she seeing many, many specialist, etc she found an infectious disease specialist who gave her a 'more accurate' lyme test. They treated her with abx for 30 days in a hyperbaric chamber and her joint pain was gone. She was amazed. She obviously still has lyme (and is on abx) but is doing much better and is a news anchor in LA somewhere.

They had originally tested her for lyme in the ER when her symptoms began but it was one of the very inaccurate tests and came back negative. It's just sad so many people have to suffer because the 'quality of care' just isn't there.

Does anyone know – are the urine tests for lyme more accurate? That is how they ended up finding she had lyme.

Just curious…

[Maz]

Hi Orchid,

If you go to this link, you can see a news segment with Brooke Landau's Lyme story – it's the 13th clip down:

http://www.lymeproject.com/lyme_disease/videos/lyme_disease_videos12.html

Unfortunately, the physican expert in this clip is stating the IDSA perspective that a tick needs to be on you for 24 hours in order for it to pass Lyme. This just isn't wholly accurate. Essentially, if the tick has latched on and has started feeding, then it's saliva, containing spirochetes and coinfections, can be passed to the host at any time. It's also not true that if you go to your physician with a tick in hand, bulls-eye rash and/or symptoms that they will automatically suspect Lyme and give you two to four weeks of antibiotics! In my own case, my physician saw the rash, but wanted to wait for a positive test, in spite of classic Lyme symptoms. Trusting his judgment, I waited, much to my chagrin now. In my daughter's case, the tick was attached between her toes for at least 12 to 18 hours and one whole toe was swollen and bright red. The infectious disease pediatrician refused to give her the two to four weeks of antibiotics as a prophylactic unless she exhibited symptoms. Erring on the side of caution, knowing how I reacted to Lyme, I didn't wait…I took her to my LLMD and got her started on doxy immediately. Her subsequent standard Western Blot bloodwork returned positive on several significant bands and her circulating immune complexes were very high. She was not positive by CDC criteria, but she was very definitely infected. I didn't bother to do more sensitive testing, as a result, and the LLMD didn't think it necessary. He felt it was much safer to treat with a prophylactic 4 weeks of doxy than risk not doing so. The risks of suffering the serious consequences of this disease far outweigh the risks of not treating an uninfected patient.

For anyone who gets a tick bite, goes to their doc and their doc says treatment is not necessary…don't take that for an answer. Get the prophylactic 2 to 4 weeks of antibiotics…4 weeks if possible. Lyme can hang around in your body for many, many years before symptoms are exhibited. Early treatment can, in most cases, prevent Lyme exploding into existence, much as it did for Brooke Landau and for me and many others here.

Lyme has been connected with every “autoimmune” manifestation under the sun, either mimicking a myriad of overlapping diseases or triggering an all-out immune reaction. Much like mycoplasma (a known coinfection of Lyme), this is a stealth organism with pleomorphic capabilites and the sickest patients also tend to be coinfected with one, two, three or more other tickborne diseases that require quite specific treatment. Mainstream docs, even if they test for Lyme, won't bother to check for coinfections, which can be what cause people's symptoms to persist long after they receive the prophylactic month of doxy.

Recent studies at Columbia University have included research whereby borreliosis infected mice were treated with TNF blockers. These mice previously tested negative for Lyme in blood serum (because the Lyme had reverted to dormant cystic form and no antibody was present), but when the immune system was suppressed with TNF blockers (the biologics used for RA and other rheumatic disease), the mice's blood serum reverted to positive! Thus demonstrating that immune-suppression in Lyme is to be avoided at all costs and that the Lyme Literate docs have been right all along that Lyme needs cyst-busting medication and that it  must be a clinical diagnosis based on symptom presentation and patient history – no test being 100% accurate for a diagnosis of Lyme:

http://www.columbia-lyme.org/research/keyarticles.html

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[Maz]

PS Crossed my mind that the following excerpt by B.A. Fallon M.D., lead researcher at Columbia Uni, (link given above) may well be why some rheumatic patients who are put on TNF blocking medication wind up experiencing MS-like symptoms, as a result:

“We do not know the extent to which these findings can be translated to the human situation.  Nevertheless, the activation of infectious spirochetes after anti-TNF therapy in mice should alert clinicians to the possibility that anti-cytokine therapy may result in a similarly increased risk of activating latent infection among patients with a history of treated Lyme disease.  At this point, we do not know whether attenuated spirochetes are capable of inducing illness-symptoms in mice or humans; while it is possible that spirochetal mRNA may be producing surface lipoproteins that stimulate systemic symptoms, this hypothesis needs to be tested in the next phase of this important research.” 

Peace, Maz

[Rockin Annie]

Hi Maz,

Thankyou for that read, so scarey, she was so lucky to have found someone to help her, unlike a lot that have nowhere to turn when they are sick. Just yesterday I went with my 25 year old daughter to the doctor, after she had been to him numerous times with muscle an abdominal pain, only to be told she might have irritable bowl syndrome, then gave her some muscle relaxing drugs. Oh well at least I have somewhere to start. So many getting sick these days and so young.

Hope you had a nice new years eve …………………..Annie

Diagnosed with RA in 2004, after trying many conventional meds I changed to mino.
2015 changed to doxy 50mgs
2016 went off doxy, after getting double pneumonia and massive flare put myself on 250 mgs Zith & 50 mgs doxy, which I will increase slowly.
Supps, magnesium, NAC, vit c, krill oil, oregano oil, thisylin, turmeric, olive leaf extract, vit B, multi vit.

[tainabell]

The Brooke Landau piece on GMA was what first tipped me off to the potential of Lyme.  It came out right after I started really suffering.  My mom told me that I should get the two-four week of antibiotics just in case, but I was told that it was nuts to suspect that I had Lyme from several doctors.  My symptoms just weren't presenting as Lyme.  (This is before I learned that Lyme is the “great imitator”). 

Two years later and wouldn't you know?  Igenex test comes back positive.  Had to go through Road Back to finally get me a tested who would send me for a test. 

Still baffles the brain that those docs wouldn't even send me for a Lyme disease test when according to my mom, the vet tests our DOG for Lyme pretty much every time she goes in there.  She (the dog, not my mom :P) has tested positive three or four times for Lyme and was treated.  Considering the fact that I regularly went out with walks with her in the tick infested MA woods, it seems like I should be getting at least the same level of care, right?  :headbang:

I'm a freelance writer by profession and one of my resolutions for 2009 is to publish at least one story about Lyme!

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