|
Post by LymeEnigma on Oct 13, 2007 8:39:58 GMT -8
:-) I've been thinking about turning it into a painting....
|
|
kelmo
Active Lurker
Posts: 8
|
Post by kelmo on Nov 10, 2007 6:57:21 GMT -8
Just a reply to the Dr. Fallon study and IV issue. My LLMD attended the conference last month in Boston and made a comment to the group regarding the results of that study. He said, if the relapse after IV happened, then it was the wrong medication for the bacteria. Rocephin may not be the magic bullet for everyone.
He is a microbiologist and is going to start a research institute on the west side of the USA. He's going to expand his lab (the one you keep reading about lately), and work to try to match the right abx to the pathogen. He wants to develop better testing, so that all the strains will eventually show.
He's been given approval to start, and is a little shy the funds to launch. This isn't getting the attention Dr. Fallon's research institute, but it's happening out here. That's fine with me, we can get appointment the same day if needed, and that isn't so with the east coast docs.
Just wanted to share this. Kelmo
|
|
|
Post by LymeEnigma on Nov 10, 2007 8:48:22 GMT -8
Wow, thanks for that information, Kelmo! It's good to know there are still ideas out there and good people willing to continue researching the Lyme Enigma!!! Anywhere we can be kept updated on all of this?
|
|
|
Post by LymeEnigma on Jan 10, 2008 10:36:59 GMT -8
I guess that's where the bug in my ear came from.... Anyone hear of any side-research Fallon may be up to?
|
|
|
Post by cobweb2 on Jan 10, 2008 11:37:32 GMT -8
I e-mailed about wanting to participate in the latest study-I'll copy and paste their reply- no go this time-but i could add my name to a list for the future.
"The study is no longer running. If you would like to be notified when new studies open, please let me know and I'll add you to our list. I will need your full name, address, phone number and email. Thank you."
Lyme Disease Research Center Columbia University Medical Center 1051 Riverside Drive, Unit 69 New York, NY 10032 Ph: 212-543-6510 Fax: 212-543-6515
I have been watching Kathryn's video over and over today. I think everyone in the whole world should see it!
|
|
|
Post by itsybitsyone on Jan 10, 2008 11:47:41 GMT -8
Kathryn's video?
|
|
|
Post by cobweb2 on Jan 10, 2008 15:41:58 GMT -8
|
|
|
Post by LymeEnigma on Jan 10, 2008 15:56:30 GMT -8
I go back and watch it every once in a while, too ... she really put a lot of thought and care into it....
|
|
|
Post by cobweb2 on Jan 14, 2008 8:14:17 GMT -8
I wanted to post a comment , but I see that I have to register-which I will eventually. Do you think she would object if I sent this via email to several people?
|
|
|
Post by LymeEnigma on Jan 14, 2008 8:57:26 GMT -8
I know she would not object.
|
|
|
Post by cobweb2 on Jan 14, 2008 13:44:23 GMT -8
Yahoooooo Wahoooooo I'm off antibiotics for a month-maybe forever! YipeeeKayaaaaa
With strict orders to continue on supplements.
|
|
|
Post by LymeEnigma on Jan 15, 2008 9:37:51 GMT -8
Wow, that's great news!!! Which supplements are you taking?
|
|
|
Post by cobweb2 on Jan 15, 2008 13:20:32 GMT -8
I forgot to mention the cat's claw to her- I have to look at my notes to see if she wants me to continue Artiminisis(but i haven't been taking that anyway).
SAMe, Acetyl-L something, Magnesium, Calcium with D, Multi-Vitamin, probiotics, Esterol-C, Fish Oil,
Any more suggestions? I feel like I'm on my own now.
For the first time since 2004 all my blood work was normal.
I still take scripted meds from other doctors.
I'm happy, I'm scared, I'm ready to move on, I'm afraid I'll relapse,I wonder if my aches and pains are in fact-age related. etc
|
|
|
Post by LymeEnigma on Jan 15, 2008 20:12:20 GMT -8
Congrats on the normal bloodwork!!!
I can totally relate to the whirlwind of thoughts and questions that go through your mind when taking such a leap. Aches and pains are a drag, but hopefully they are no longer a huge reflection of your overall health. I was just noticing today, looking through my old blogs, that I actually have about half as many symptoms now, compared to what I had when I initially went off the zithromax/plaquenil. I have hope....
|
|
|
Post by cobweb2 on Jan 16, 2008 4:57:09 GMT -8
Well, one thing- if I'm not sick I become instantly richer! Richer may not be the right word, since that assumes I am already rich- NOT. I believe stress is a huge factor in feeling well, and finances are what cause me the most stress. What a circular problem though- because we did have enough money to "get by" when I first got sick. So I don't know.
Anyway- I feel like I am flying without a net right now. More truths to my going off antibiotics-and this is a bit discouraging. The real reason the LLMD took me off antibiotics is because she feels like "something else " is going off.
I feel like I am part of a HOUSE episode where House deliberately makes the patient sicker to see what's really going on. Bottom line- my LLMD is casting me back out to make the rounds of specialists. She is really curious to see what happens to me without the antibiotics-which plays into my own desire-but has left me feeling quite vulnerable.
I'm not a success story per say. But I am going to carry on "as if", on a wing and a prayer.
|
|