There are many things to talk about but I'll keep it limited to treatment updates with the exception of one thing. I FOUND A PLACE TO LIVE!!! It's quite expensive which means taking a big chunk out of savings each month but they'll accept my dog and it's in a relatively central location. I think its going to be an interesting experience. The landlords seem to be a bit unorganized and quirky but very nice and likeable. They remind me a bit of the woman in Tales of the City (for anyone who saw the show or read the books).
I had an appointment with my ME/CFS doctor today. He is excellent-I'm so impressed. We went over my most recent labs from January. He had wanted to do more immune testing to see if the previous labs were an isolated incident or whether I do indeed have immune dysfunction.
The test showed immune deficiency in 2 subclasses which means I qualify for another diagnoses (IgG subclass deficiency and possibly Common Variable Immune Deficiency). My doctor said that normally in ME/CFS the immune system testing shows an immune system in overdrive but mine is the opposite. He said that the levels were low enough that they need to be treated. Normally treatment is Intravenous Immunoglobulin (IVIG) but its expensive and insurance companies won't pay for it. We're going to try to treat it with Colostrum and Transfer Factor. What's interesting to me is these levels were normal last February when I had them tested. I do need to treat this because I can't afford to risk getting infection after infection. I have enough infections already.
My CD57 has dropped from 96 to 44. My doctor said this is a reasonable indicator of lyme (in addition to clinical presentation). He thinks lyme is a factor that needs treatment. Luckily Minocycline also hits lyme. He also believes that lyme is in my spinal fluid and one of the factor's involved in the back pain. This makes sense to me because 1 week after starting Minocycline was when the back pain started up again.
We talked about how I've been unable to drive on the freeway likely due to POTS. He wants me to try sitting up for awhile to see if I get woozy. If so a medication called ProAmatine (aka Midodrin) which should help.
He is still concerned about my colon and wants to try another go around with Xifaxan but at a higher dosage for a longer time. If Medicare won't pay for Xifaxan then he'll prescribe something to treat parasites.
One thing I've been worried about in terms of moving is mold so I asked my doctor (who did a presentation with Shoemaker) about it. I asked about the 'dreaded genotype'. He said to not put much stalk in that but to be careful. He also said that Shoemaker did research regarding mold (no surprise there) that showed there were about 12 molds that make people sick. I didn't ask which ones. I was able to let go of a lot of the fear about living in an apartment. I don't want to repeat 2009 when I was bedbound.
Although I want to try gcMAF I can't until I get some of these infections under control. The bacterial infections I have are Chlamydia Pneumonia, Lyme, Bartonella, and possibly Mycoplasma Pneumonia. I have two chronic viral infections EBV and HHV-6.
There's a lot of work to be done but I'm feeling a bit hopeful that I'll get more improvement upon treating a few infections.
I saw the spine surgeon Tuesday. The neuro exam showed I have no achilles reflex which means the S1 disc is pressing on the nerve that controls the achilles reflex. I had my MRI yesterday and will see the surgeon again on Weds. I'm hoping he won't say I have to have surgery. The physical therapist cautioned me stating it could lead to foot drop and/or other symptoms which would mean a trip to the ER and a fusion. With my immune system not functioning very well I don't want any surgery due to the risk of infection.
It's nice to be finished with the housing search. That has consumed most of my time. I haven't been able to keep up with anything. Next week we'll move the rest of my stuff over. My dad will be here Weds through Sunday. I'm so glad I get to see him again.
I've been struggling cognitively today (it was a busy day for me) so pardon any spelling and/or grammatical errors or sentences made up of 5 words.