posted
I was just wondering, I fell outta the loop a while back. It kills me inside to come here, to read all this, and wonder why I'm better when everyone else isn't.
I shouldn't have even lived past 14. But now that I did I wonder why me and not every other child out there? I know I shouldn't wonder, and I am thankful...but having a baby makes me think about how hard it would be to lose one, or to see that child suffer...and I think, Why would God let other people's babies die from this? Or lose every aspect of their quality of life?
I wish I had been well enough to go to medical school....
Anyway, I read alex's story. It made me wonder what happened to Dr. J? Is he still able to treat? even if the law allows it....he's getting up there in years. He's the doctor that saved my life....I was barely well enough to get there, I needed oxygen, wheelchairs, 24 hour monitoring, pain/cardiac/joint/seizure drugs.... It's hard to believe that was me when I look back now. I know I'm not cured, but I would definitely say I recovered really well.
We are still watching it, and I have a specialist in CA that I go to now. He's treating me during my pregnancy to hopefully prevent any problems with my little bean. I am still on Fentanyl (a morphine-like drug that transfers through the skin) but reducing it a little throughout the pregnancy. The pain was the one thing that never went away, for some reason...my nerves are still firing way too much. But everything else is strong...I still have a portacath too, and after baby is born (if not before) we will run a lot of IV abx.
Anyways...I just wanted to find out, what's the scoop on Dr. J? I would have loved to go to his 80th birthday but just couldn't afford to.
-------------------- ~~~Lishka~~~ Posts: 18 | From Pacific NW | Registered: Aug 2008
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Absolutely, scoop is there is a six month wait for first appt and intitial appt fee is $850. Follow up visits are MUCH cheaper.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
He also consults with women through out their pregnancies through their LLDs. My very good friend, our member Luvdogs, just gave birth a week and a half ago to a healthy, beautiful boy and Dr. Jones consulted on her meds throughout her pregnancy.
It is well worth having your LLD consult with him. Those consults I think are $125 per phone consult.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
posted
Yep, a 6 month wait but we are eager for the appointment which is set for December. In the meantime I am considering a couple of different llmd's that can see my daughter sooner but will go to CT with her to get his opinion for sure.
-------------------- I found my original identity! It has been a bit over 12 years...can't blame me for forgetting my password, right?!!
Member red (Member # 1886) Registered: 26 November, 2001 70 posts Posts: 164 | From NJ | Registered: Jan 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic