Friday, May 4, 2012

Treatment Update

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.


Elaine said...

Wonderful news about your housing! So glad you found something that suits your needs.

You have so much going on... I can't imagine keeping up with all that. You were very clear in your post:)

Blessings to you.

At Home on the Rock... said...

Great news about your new place to live! A huge load off of your mind for sure :)

Glad to hear about your new treatment route too -- CFS/ME is such a complicated path

Renee said...

So glad to hear you have a place to live Teri. Wonderful! Lots going on for you medically, but sounds like you have good doctors to help you through it all. Sending hugs and prayers.

Anonymous said...

I wonder if there's any way to contact you privately to find out who your doctor is. I'm looking for one that comes recommended in your area. It's great to hear that you both found a place and have a doctor who is on top of things.

me/cfs warrior said...

Thanks everyone! Linda- It is a huge load off my mind.Now I can get back to living again.

Renee-I have a great doctor. I'll be looking for an immunologist once I move. Whenever you say the happy dance or yahoo-it's like I can visualize as well as hear you say 'yahoo' (it's quite comforting).

Anonymous-I need to put the link to my email back up again. You can email me at I'll be happy to share my doctor's name with you.

Alison said...

So glad to hear you found a place to live! Good luck moving. Get tons of help so it's as little stress as possible : )

ME said...

Hi me/cfs warrior, I've just become a follower. I live in Australia, but am heading over to the US soon.

Glad to see you have found an appartment.

Tanya said...

I just found your blog today - I have M.E. too and it made me so happy to see someone finding such an awesome M.E. doctor!

me/cfs warrior said...

ME-welcome! Thanks for taking the time to become a follower. What part of the US will you be in?

Tanya-thank you! I do have an awesome doctor. I feel lucky to have him.

Feel free to contact me ME and Tanya at

I don't have internet yet so I don't know when I'll be able to check messages again but hopefully (fingers crossed) next week...

CFIDSWarriorSeeksPeace said...

Hi. I heard of you a year or so ago. Saved a link to your blog and finally got the mental organization to look at it again. I just wanted to wish you well, and say I'm right there with you.
Hope to follow more, and get in touch perhaps, as I get settled, and as I get more used to this blogging stuff.

CFIDSWarriorSeeksPeace said...

Just read this entry of your blog again, and now that I've figured out how to log in, I wanted to say that I am really grateful how openly you share about what you're going through. It helps me feel less alone.
I would love to blog my experiences, but cannot, as too much brain fog, and also too much of a highly personal nature, which might adversely affect future career options (if I ever regain the ability to work) or benefits.
We have much in common - from senior dog (I lost mine four years ago, after having been too ill even to walk her for so long)to some of the same medical issues (spinal issues, gut issues, along w/ the ME/CFS).
I've been ill over twenty years - close to twenty five years.
So many of those years I felt so alone. Now with the internet, I am so thrilled to be able to connect with others who are living with this illness, and to see all the new exciting research that gives me hope.
Best wishes.

LML said...

Hi there,

I just googled "Immune Deficiency Subclass 2 Bartonella" and your blog came up. I have Lyme Disease as well with the co-infection Babesia Duncani but all the clinical manifestations of Bartonella. About 2 years ago, a test came back with the result that I had Immune Deficiency Subclass 2. That was a shock to me because I haven't been sick my whole life until a few years ago, which now I know is lyme disease. I was wondering if the Bartonella causes a Subclass 2 Deficiency or if it is the Lyme. One of my symptoms was major chronic fatigue too (I had to hire a nanny to take care of my kids). I had the Metametrix ION profile done (same doc who ordered the Immune subclass test) and it showed I was low in certain antioxidents that are part of the Krebs (Energy) cycle. I kid you not, within 2 weeks up supplementing those things (Magnesium with Malic Acid, CoQ10, ACES+Zinc supplement which has selenium) my fatigue started to fade away. Not sure how it is for others. Right now I am treating the Lyme and it is TOUGH!
All the best!!!