Why Chronic Lyme Lacks Research...

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hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 5/26/2009 1:48 PM (GMT -6)   
www.angelfire.com/biz/romarkaraoke/Lymetruth.html

This link has a few good points. I admit I didn't get through the whole thing.

Razzle's right. Experimenting is key. It's your health and it's all that can be done with the state of the treatment as it exists today.

I really feel like time is a wasting though and if we could ban together -- I guess some have already -- for better research that would be awesome.

I'm not the most patient patient!
Bit June 08.


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 5/26/2009 3:13 PM (GMT -6)   
Thanks for posting. I appreciate and share your passion and just wish I had the energy and ability to do more. I didn't get through it all yet either but did get far enough to read (and actually retain-lol) that there is an attorney who is representing patients in a law suit. I find this extremely encouraging. If just one big case is won a precedent will be set and then the tides might finally start to turn.

Just think if it weren't for the select group of llmd's willing to treat us appropriately and aggressively at their own risk, we would be even much worse off. Thank goodness there are a few doctors who actually abide by the oath they took and even better that some have the much needed compassion we need and deserve.

I continue to wonder why it's not possible to file a class action suit against one of the labs, insurance companies or IDSA. It all seems to go back to the IDSA who is at the root of the problem. How can one entity be so powerful? I guess I'm just naive and am having a very hard time grasping that this has been allowed to happen.

If I'm lucky enough to eventually respond to treatment I hope to be able to give back in some way to help those who are suffering.

I'm not the most patient patient either and I'm mad as he__!!

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 5/26/2009 3:21 PM (GMT -6)   
I sometimes get angry too. I'm mostly discouraged as I feel helpless. No test. Experimental treatment. Frustrating as HE__!!

The LLMD once said to channel the anger into healing. Great advice I think!
Bit June 08.


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 5/26/2009 3:45 PM (GMT -6)   
I know i developed a lyme rash while on mino my lyme doc was like oh get a a pic and i had my camera he took a pic and was like please bring me a copy. you know like his insurance policy or his proof and protection to treat me. the actual fear he tried not to give off but was there. he also had another patient at the desk asking for work excuses and he was saying please be careful these are dangerous people. and then implieing hush hush noone should hear this conversation. its alarming.

I just proceed for testing cd-57 west blot any proof. then I really want to try Envita. I think this is a wonderful place.
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 5/26/2009 4:53 PM (GMT -6)   
Good God....................... we're up against the impossible and too sick to do anything about it..................... I hate this disease!

All EGO.................... all EGO...... and $$$$$$$$$$$$$$$$$
Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, possibly just tested positive for koseri IgA, Morganella motgani,Rocky Mountain Spotted Fever (RMSF - yay! another acronym), Typhus Fever, Klebsiella pneumonia, Proteus miabilis, Citrobacter i IgA, Hafnia alvai IgA, NKC4, Interleukin 4 (IL4), IL8, Immunobillin (IM01). 
Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Acidophilus, Lyrica 600mg
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 5/26/2009 5:11 PM (GMT -6)   
Read "Murder by Injection" by Eustice Mullins...
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), IV Milk Thistle, probiotics.


Lala429
Regular Member


Date Joined Apr 2009
Total Posts : 55
   Posted 5/27/2009 7:21 AM (GMT -6)   
Quoting Scorpio:

Just think if it weren't for the select group of llmd's willing to treat us appropriately and aggressively at their own risk, we would be even much worse off. Thank goodness there are a few doctors who actually abide by the oath they took and even better that some have the much needed compassion we need and deserve.

Scorpio - my LLMD was investigated. They're leaving her alone right now but reading your post just makes me so sick that the GOOD docs are being persecuted. She doesn't make any money off of me at all (except for what insurance pays for her office visits, which are once a month) - she doesn't ask for money up front, nor does the pharmacy with whom she is associated for my IV abx. I am on a payment plan (I have to pay 20% of the meds), nor does the lab that does my bloodwork...and I am very fortunate and thankful.
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