Chronic Lyme Disease? Avoid Johns Hopkins if you need ABX...Here's why

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hopingToFindCure
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Date Joined Nov 2008
Total Posts : 759
   Posted 5/3/2009 1:26 PM (GMT -6)   

+Lyme
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Date Joined Apr 2009
Total Posts : 1304
   Posted 5/3/2009 1:38 PM (GMT -6)   
Hoping: Is this true? "Lyme IgM Western blot should not be used to diagnosis any condition > 1 month duration due to high rate of false positives"

hopingToFindCure
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Date Joined Nov 2008
Total Posts : 759
   Posted 5/3/2009 5:14 PM (GMT -6)   
I didn't catch that, but I guess so! According to their research or whatever the article was from that they abide by. Not much independent thought going on.

Someone had posted a question about Johns Hopkins and I know in Maryland it's an epidemic so people might say "Hey, I'll go to the experts -- Johns Hopkins". They may be good for some things but if you have Chronic Lyme Disease they don't know how to treat it or diagnose it or deal with it.

Sadly, no one does as far as I can tell. All guess work.

I have never been to Johns Hopkins so I couldn't say how they'd treat someone who mentions Lyme Disease. I know someone who went for some weird neuropathies and was told it was "idiopathic". They were mean to her and her husband and just said "We don't know". She's currently seeing an LLMD elsewhere and it much, much better -- on antibiotics! So, that would be indicative of chronic lyme. Very strange disease course. But no one understands it -- even the experts at the best hospitals in the world.

dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 5/3/2009 5:45 PM (GMT -6)   
It is also said that lyme symptoms are no indication for lyme testing ?? Do I understand that right??
Wow, this is indeed interesting.

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 5/3/2009 5:51 PM (GMT -6)   
But wait, there's more!

www.hopkins-arthritis.org/arthritis-info/lyme-disease/controversies.html


Believe it or not, I think it encouraging at least that they acknowledge some of us feel like crap after treatment.

Oh well.

Nothing can be done though according to them other than palliative type care. So what are we supposed to do? Go home and get and bed and try as best we can to get better...

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 5/3/2009 6:52 PM (GMT -6)   
Ummmm, no vitamins or hyperbaric treatment? No nutritional management or magnesium? Clearly none of these people have Lyme. Things like this really make me angry. It's people like this that keep us sick. Did you also see that most treatment was from 14 - 21 days? Very sad.

Thanks for posting this and giving us a heads up.
2003 symptoms started with very intense panic attacks and anxiety. Also had sound and smell sensitivities. Was in and out of the hospital from 2003-2005. Diagnosed with panic disorder.
2007 found an LLMD and was diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence. Muscle pain, joint pain, floaters, stiff neck, rib pain, slow thinking, brain fog, etc...
2009 went back to see LLMD. Diagnosed again with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start (starting slow and working my way up, Mepron(babesia), Ultram(muscle/joint pain), Thyro Complex 60mg(Thyroid), Probiotics ,Caproyl(intestinal candidas),Psyllium Powder(intestinal cleansing support),Bentonite Magma(absorbent aid for intestinal detoxification)
-Plus a ton of other supplements

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