February 1, 2005

Lyme Disease Newly Diagnosed

Here goes entry number one. I was diagnosed with Multiple Sclerosis in 2001. 4 years later, after the birth of my son and the severe decline of my health, an alternative MD thought to test me for Lyme Disease. He used a better test (serum Western Blot) than they had used in 2001 (ELISA) and this one turned up positive for late stage Lyme Disease. I’ll write more history later.

Currently, I’m deciding amongst three hot Lyme docs in my area. Dr S, Dr G and Dr H. I’m lucky I have such great docs from whom to choose and a PCP, Dr R, who is very, very helpful. The wait list for Dr S is 9 months long so I’m using all my connections to try to see him sooner. I have an appointment with Dr G in early April and I’m on the list for cancellations. Dr H’s office called today and I can go in for an appointment as soon as Thursday.

I want to get treated as soon as I can even if that means switching doctors in the middle. If I can go see Dr H soon, then Dr R can order any tests and maybe start me on antibiotics. Oh, to be treated for the disease I actually have. I spent six months injecting myself with beta-interferons one day out of every week and feeling like I had the flu one day out of every week – muscle aches, head ache, brain fog. It was horrible. And now I know that it wasn’t helping me and might even have been hurting me.

If I had Multiple Sclerosis, especially if it was atypical, I would have myself tested for Lyme Disease periodically just to be sure. And at a good lab, too. There are labs that specialize in Lyme testing.

I just finished talking with my husband, K, about timing of doctor visits. He has a flu and so does N. I feel challenged to balance my responsibilities as a wife and mother with my drive to get treatment going. (And the fact that we’ll be changing to a PPO health insurance in April so I want to get as much covered under the HMO in the next two months-MRI, SPECT, antibiotics, IV.) I have been so absorbed with reading about LD that N has not been getting the usual level of attention from me, plus he’s sick and needs more TLC. When he’s sick, he can’t go to daycare and that means I don’t have time to do research and so forth. K and I talked it out. It’s easy to get obsessed about all this. I just remembered to breathe. Deep breaths help me a lot. Well, my 9:30-time-for-bed alarm went off so that’ll do it for now.

Posted by LymeMom on February 1, 2005 8:29 PM

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Comments

You are not alone in this struggle. Seems you are doing the right thing towards your healing. Good luck an go one day at a time, and remember, when you start getting overwhelmed with symptoms from the disease, remind yourself that the disease is causing you to feel all that crap. I am concerned about the treatment you recieved for ms. Hang in there

Posted by: Jamie at February 26, 2005 1:09 PM

I too am a lyme Mom and I can certainly relate to the strain lyme disease puts on a relationship with a spouse.
I think I know the DRs you are seeing or trying to see in the SF area. I was on Dr S waiting list, but fortunatly I found DR G and I am very happy with this DR. Hang in there and God bless you.
Lizzie

Posted by: Lizzie at May 28, 2005 3:28 PM