Also, could it be possible to improve slightly on IVIG? I was on IVIG because the doctor thought it might be CIDP, but I didn't improve enough for it to be CIDP. I did improve a tiny bit though. Logically, it sounds right. IVIG would strengthen the immune system, which would help fight Lyme, but I don't know if that's the case.

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Originally posted by sarahlea1717:
I was under the impression that someone with Lyme disease can have a lot of different symptoms under a number of categories. Someone on a group for another disease that I was once tested for said if I never had a rash (I know that one is untrue) and I never experienced swollen joints, it can't be Lyme. Does a person have to have swollen joints at one point in order to have Lyme? I thought not, but I wanted to check before I replied to this person.

Also, could it be possible to improve slightly on IVIG? I was on IVIG because the doctor thought it might be CIDP, but I didn't improve enough for it to be CIDP. I did improve a tiny bit though. Logically, it sounds right. IVIG would strengthen the immune system, which would help fight Lyme, but I don't know if that's the case.

My first appointment with a LLMD is next Friday, so hopefully I can get some answers then.

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My family's cabin is in the Wausau area. That is where I got the tick that I brought home with me. Do you know if that's a high area for Lyme? I know the northwoods is - my mom's ex-bf had a cabin in Eagle River that we would visit a lot as well. But this was after my symptoms started, and I never saw a tick. So if it is Lyme, I would have to say I contracted it near Wausau.

I'll come online and post my results on the 18th. Of course I won't have any test results back already, but I can post what he says.

I never had swollen joints either..my symptoms pretty much match the ones that NP40's son had/has...

One person could have swollen joints, one with vibration problems, one with sensitivity to light and sound and smell. It hits everybody different which is why we all think its such a hard thing to diagnose.

I tell people I talk to about all the Weird things that Ive gone through and they always respond like "I never knew it was that involved"

People only know about the cliched problems they've heard about over the years.

Due to its nature and obscurity, thats why some many doctors have just passed it off.

Maybe I'm just venting but it really upsets me when people aquire this disease and doctors discount peoples feelings and dont take the time to really investigate what the real problems are.

I had a friend that had all the signs of LD and he had asked his doc for a LD test and his doc just told him NO! He believed his doc and now he just continues to suffer and wont listen to me since Im not a doc.

The town my father lives in (chadds ford PA) has almost an epidemic on their hands. The local paper stated that 1 out of 5 has lyme disease!! Their going to install deer feeders in the fields all over the county to decontaminate the deer of ticks each time they come to feed. If this precaution is happening then you know that this is a real problem.

Sorry to write a book but I just get pretty passionate on the subject.

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Originally posted by sarahlea1717:
Yeah, your LLMD sounded great, but this one is a lot closer for me. The lady from the support group said he is relatively new to it, but definately willing to learn and has a number of patients already. He also works with other forms of healing, like nutrition, acupuncture, healing touch, and other things. So I thought at the very least, if I don't have Lyme, he might be able to help me with something!

My family's cabin is in the Wausau area. That is where I got the tick that I brought home with me. Do you know if that's a high area for Lyme? I know the northwoods is - my mom's ex-bf had a cabin in Eagle River that we would visit a lot as well. But this was after my symptoms started, and I never saw a tick. So if it is Lyme, I would have to say I contracted it near Wausau.

I'll come online and post my results on the 18th. Of course I won't have any test results back already, but I can post what he says.

Good luck to your son as well. I hope he is starting to feel better.

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Wausau ? I live in the Wausau area ! The place is full of lyme ! I'll bet that 1 in 20 people I know in this area, have contracted lyme. The outpatient services at our local hospital is full of lymies getting their daily IV's.

We commute northward for our LLMD visits.

Though your Doc is new, he/she sounds willing to learn. I'm sure the support group may hook your Doc up with mine if he/she need help in treating patients. Make sure your bloodwork is sent to a reputable lab, like Igenex, MDL, Stonybrook.

Our son is slightly better since he's been on IV Rocephin for 5 weeks. His spiking pain is less severe, and less frequent. Hopefully, it's the ABX taking hold, and not just pain meds covering it up. Talked to our LLMD and he thought the Rocephin was starting to kick in.
Funny, his pain is better, but his fatigue is worse.

I'm hoping that this doctor can find some answers for me. I don't know where else to turn. It's very discouraging to be told, "We don't know what you have, or how it will affect you in the future. So you probably should prepare for the possibility that you will be in a wheelchair." I feel lost right now.

The 18th can't come fast enough for me. I've found this group to be a great resource for me. I've been reading, and reading, and reading. *lol*