Thursday, October 24, 2013

Treatment Update

Because of an increase in symptoms along with a decrease in functioning I needed a short phone appointment with my M.E. doctor to go over some test results.

The lung functioning tests were not sent to my doctor for some reason but he said hospitals can sometimes fail to follow through.

Anyway, I had a urine amino acid profile done. My doctor ordered it to check for malabsorption. He said its a test Medicare will pay for. The results showed that my body isn't absorbing much of anything.

Between that and the slowed gut motility my digestive system is a complete mess.

It could also explain the weight loss.

I'll try a low dose of Reglan in the hopes of speeding up my gut motility. When I eat normally I am so bloated that its become painful and I can't eat much for the next two days. I'm hoping it will work. The only caveat is it can cause tardive dyskenesia. Since I'm allergic to Compazine (and both meds are chemically related) I'm a little nervous about taking it but need to do something. I couldn't tolerate the Domperidone which is also used to treat gastroparesis.

I need to find a better protein source. If I could I'd eat grass fed meat but I can't stand the taste of meat and I don't like poultry or seafood. Not a good thing to have with this illness (picky eating).

The Nagalase test came back very, very high meaning my immune system isn't communicating very well. It's also a protein made by cancer and causes immunodeficiency. It can also be a result of a chronic viral infection.

My doctor would like me to go back on Valcyte for awhile but because of how bad I had gastritis when I took it in 2009, its contraindicated.

My immune system is also a complete mess. It doesn't matter what test I do now. They all come back abnormal. There goes my idea to get off antivirals in the hopes of saving money.

Nagalase interferes with the production of a chemical called gcMAF which can be treated with gc found in colostrum milk. I may try a very low dose of gcMAF (very low dose) except I can't afford it at this point. BetterHealthGuy has an excellent summary of gcMAF. My nagalase result was higher than his (at 3.2). He writes of his Nagalase test result:

The practitioner I worked with suggested that 2.9 was in the range of someone with HIV or cancer in terms of the impact on the immune system...
It has been suggested that ongoing antimicrobial therapy without a working immune system is like leaving the house with the door wide open inviting burglars in. By using GcMAF to activate macrophages, nagalase drops, and one may regain a functional immune system. The door is then closed to further invaders and we may no longer serve as a microbe hotel. Maintenance therapy should not be needed once the immune system is once again properly functioning. - See more at: 

One odd test result is that my estrogen and estodial came back very, very high. He said he hasn't seen levels that high before. Who knows what that's about. The good news is my ovaries are working.

We're going to treat for parasites to see if that will help the weight loss and malabsorption.  I'll try the herbs Macuna and Arteminisin.

My sinuses have been feeling inflamed a likely consequence of my last mold exposure in the apartment. Because I have a genotype where my body can't effectively eliminate toxins/infections (whether mold/chemicals. virus/bacteria die off) we're going to try amphotericin nasal spray.

I'm also going to trial Na EDTA (Wayne's protocol).

He thinks the shortness of breath might be babesia related. Because I can't afford Mepron we might try something more affordable.

Basically I've started going downhill in many ways so we're trying to stop the slide into going into the bedbound territory.

Because I have had M.E so severely in the past I'm constantly at risk of going back there again if I don't do any treatments. It sucks because I can't afford treatments. I can't even afford to pay for the meds on I'm now.

The other thing that has had me in a panic is I need a root canal. My tooth hurt so bad last night after drinking something cold. It wasn't brief pain but lingered on for quite awhile. That and the toothache I've been nursing for awhile now means root canal. The lymph nodes on that side of my mouth are all swollen and I've started running a low grade fever. The earliest appointment I could get was for Monday.

I called around to price how much it costs since I don't have dental insurance. The average price is between $1200-1350 not including a crown. Crap!

None of the endodontists will accept monthly payments (believe me I called everyone that was within my 4 mile driving radius). One place said they accept Care Credit so I applied for that. It's at a 25% interest rate. For the next 24 months my food budget will be $200. Damnit.

I also got online and looked for low cost dental clinics but most have closed due to budget cuts. One place serves HIV clients but I left a message anyway.  I looked for places that would help pay for dental costs. I was happy to find a place. But when I called there was just a message stating because the wait list is over a year long they aren't even accepting applications for help anymore.

I canceled a meeting at 12 because I spent the entire morning and afternoon researching dentists. I did make it to therapy. The therapist mentioned that three cancellations means I could get kicked out of treatment.  Really? I was shocked. I've only had to cancel twice both times because I was so crashed that driving would not be safe. Does anyone even understand what its like to try to have a life with this illness?

Why in the hell does the budget always need to be balanced on the backs of the poor, disabled, and elderly-the very people who need the help the most but are so exhausted struggling to get by that we don't have a strong voice like the wealthy do.

Things really can't get any worse financially. There goes trying to get my friggin brakes fixed.

And no I did not spend my savings frivously. If I did I'd have a new tv a new ipad, new clothes, a warm coat for winter, a new Macbook pro, and more.

But I don't. I spent the money on medical needs, vets, and an apartment that costs twice a much as I could afford. Everything went for out of pocket medical costs and nothing was used for anything my doctor didn't recommend.

I have to make money. I just have to. I'm going to go forward with my idea. I don't know if it will work but I have to try something. I feel like a sinking ship in many ways. Like the boat is filling more rapidly with water and I'm getting too weak to bail it out as fast as I used to.

I am growing Kale and Beets. The plants are coming along nicely. The only issue is the chickens like Kale so its quite wholy (wholly? holy? holey?). Hopefully they'll leave some for me.


Lee Lee said...

I think maybe it's time you considered doing an online fundraiser for yourself. Quite a few people have done them and raised enough money to get them out of that panic zone. Some friends set one up for me about a year ago and they raised $8000 which was enough for me to pay for a stair lift so I can upstairs to my bedroom.
There is no shame in admitting that you need help, and I have found that allowing people to help actually makes them feel useful.

me/cfs warrior said...

Thank you Lee Lee. I'm thinking about doing that. It might be time to swallow my pride and just do it.

I've contributed to others who have been in a similar position. I was glad for the opportunity to help.

I think I need to do it. It's stressful not knowing whether or not I can afford the treatments I need to keep me a little functional.