CONFUSION!!

So, I fly to Houston today to see the MS Specialist that is supposed to know about Lyme. He started in on the "no lyme in Texas" spiel. Frustrating.......

He says all he sees is pointing to MS.....he looks at the Igenex reports and says there is not enough there to consider Lyme, that I needed to have the CSF checked for Lyme titer, which had never been done(so I/we thought); he also said the MRI's are showing him seriously active MS lesions (LLMD says he is seeing NOTHING but Lyme, no MS). I got home and read up on some things and spoke to the local neuro and he told me he did have the b Lyme checked on the CSF and it was negative(want to talk that over with the LLMD). I found a site today that had some info I think is interesting. It also points more towards a definite MS diagnosis.

I thought I may have found a local neuro that used to be a Lyme specialist who I could run some of this by for possible help or direction, but I do not know if she will see me. Waiting, in limbo.....

Also called the LLMD also today to see what his thought was on the CFS being nefgative and the aforementioned site info as well. Still waiting on him to call back as well. Limbo......again......

I do not want a definite diagnosis of anything debilitating, but I just want to know what the heck my body is doing.......it is so frustrating to be caught between 2 diseases that have no 100% diagnositic tests to tell you what is going on. I feel pulled between 2 doctors who are routing for their specialty to be the "winner" and I am stuck in the middle of it all not knowing what to do. The LLMD says do not do steroids as it is a trigger for Lyme, and NN(new neuro) says I should start steroids right away. ON(old neuro) says I should start Avonex treatment ASAP, and NN says he thinks it is not that great and I should start Betaseron ASAP,.......what to do, what to do????

That costs how much???

Well, it has been an expensive year so far. By the end of January I had already cleared my $500 deductible with the rheumatologist, and he did nothing for me but give me an NSAID (Mobic) that did nada for me and took a bunch of xrays that showed very little. (This was prior to me figuring out that mybe I was in a serious Lyme relapse.) He ran over $1000 of blood tests and told me eveything I had told him already.......go figure.



So, I go to the OB for a regular check up(on meds) and he gets into the Lyme stuff asking how I have been, and that is where this all started....... Boom, he says go get an MRI, it has been a few years. That was $300...the neuro follow up was $100, the meds from the OB were over $100 (for one month) plus all the supplements, which cost a bundle($$???), then 2 more MRI's and the spinal that were $200, and then the Igenex bill came(testing for co-infections)........$630. Yep, that one was straight outta our pockets, as Igenex is not on insurance. The poor Mastercard has taken a beating the past couple of months.

Today's appointment.....

went well. I mean I guess there was not much to talk about since the other MRIs are tomorrow. LLMD was just gauging how I was doing on my meds and supplements. I do not think I have seen much change yet, which it has only been 3 weeks on most of it so it is still early. He thinks I did have a "herx" reaction and that is good. Although it sucks when it is going on.....hard to deal with 2 kids when you do not want to get out of the bed because everything hurts and is tired. I was prodded at more today and more blood sucked out. He still has not heard from the last igenex test for the co-infections. That should come in any day.......

Tomorrow I will be poked (literally) for the spinal and prodded for more blood and more lovely shots of the neck and upper back.