There's a lot to catch up on. I doubt I'll have the energy but hopefully I can summarize.
I called my doctor's office and was able to speak to him the day after I had my reading (July 29). He was useless. He had no idea what was going on with me. I felt like I was back at square one. I got off the phone feeling incredibly discouraged and hopeless.
He decided to treat me for babesia which involves Mepron and a high dose of clarithromyocin (500mg twice daily). He also wanted me to restart the Methylation Protocol which I did the next day. This time he suggested I take one supplement for two days (a very tiny dose), and then add a supplement so I can figure out which supplement makes me feel "weird." The theory behind this is that if you feel bad from a supplement that usually indicates one your body needs. Normally these supplements don't have an impact on people who don't have a methylation block so feeling bad with a particular supplement points towards where a block might be. The easiest way to find out where and if one has a methylation block (in the methylation cycle) is to test for it. Then supplements can be tailored around the specific blocks. Amy Yasko developed the protocol for autistic kids. Then a man named Rich Van Konynenburg, PhD developed a simplified protocol in which he hypothesized might be helpful for people with cfids. This is a new treatment. I think it started in January of 2007.
So I started adding supplements last Weds. Today I added the last supplement so I'm now on the full simplified methylation protocol. Rich Van K is active on a couple forums I'm on. He is a very dedicated and kind man. I've figured out which supplement causes me the most problems. It's the Neurological Health Formula which is really an activated vitamin. It is supposedly composed of the body's basic chemistry and so it alone can pack a punch and cause the methylation cycle to kick in. Once that happens the immune system kicks in which is a great thing. Except in addition to the immune system kicking in, all the viruses, and bacterial stuff that was not being helped by the immune system also get activated. A big die off can occur and people can feel miserable. Detoxing is important during this process.
I tried to talk my doctor into prescribing some cholestyramine but he said he thought I would have more success with the Mepron and treatment for babesia. He doesn't think lyme is a factor at this point but warned it may become active once the babesia is treated.
I wish he sounded as sure as I was making the conversation out to be. I'm realizing his style is rather wishy washy. He'd make a great jungian analyst because they place great value on not knowing. However, in a medical doctor I want someone to be more definitive. I realize though with this illness, that's not possible yet.
He does think I have babesia but in the back of his mind he is also thinking viral. I wish he would treat me for the viral infection at the same time.
I was just hoping he would be able to say this is what's wrong with you and this is how we treat it. Even consulting with a cfs specialist yields no answers.
I am going to pursue a second opinion from a lyme literate doctor (LLMD). There is one that my online friends see. He is one of the top people in the CA. One friend is as sick as me and has viral issues as well as lyme. She is being treated for both. She is being seen by this doctor. He knows about lyme and it's co-infections, including babesia. He is very confident that he can help people achieve complete recovery.
There is a lot of controversy in the community regarding lyme. I recommend that everyone read Pamela Weintraub's book "Cure Unknown." Testing for lyme and coinfections is notoriously unreliable. Given its inherent unreliability, the most reliable tests are through IgeneX or Central Florida Labs. The Elisa test which is the standard used by most doctors is at most 35% reliable. I also think everyone should be tested for all viruses, lyme, it's co-infections, and mold poisoning.
I have lyme as part of my illness along with high titers to the Epstein Barr virus, and relatively high titers to HHV-6.
I'm hoping the methylation protocol will kick start my immune system into functioning again so I can effectively treat what's wrong with me.
My doctor doesn't believe that cfs in and of itself is an illness. He views it as being a descriptive term that warrants thorough investigation into finding the cause. That means searching under any rock. Routine medical test will not be effective in determining what's wrong.
I believe that genotype testing is on the cutting edge of finding out why some people respond to treatments and some don't. For example, there are those that responded to valcyte but others who didn't. Some people, who have lyme respond to antibiotic treatment, other's don't.
Some people aren't given the right tests so they are inappropriately given the wrong treatment. If lyme and its co-infections aren't properly treated you end up with chronic lyme.
Then throw in the issue of mold poisoning and mycotoxins, and biotoxins. It's all very, very complicated and involves lots of tests that insurance won't pay for.
But there is the possibility of improvement, if not out and out cure. I've had 20% improvement from the round of antibiotics I took. Someone who works at the place I used to work said that it usually takes between 4-6 months to see any improvement in lyme disease so the fact that I had 20% improvement in 10 weeks of treatment is encouraging.
I have a long ways to go. I know that doctor's aren't going to figure this out for me-they do not have the resources so it means I'm on the computer a lot researching this stuff. It's paying off.
I refuse to live my life like this. I just can't do it. I won't do it.
Oh, and try getting ah old of a lawyer? Good god. By the time I'm able to actually speak to one in person I'm afraid my 60 days will be up. I'm going to send in the notice of reconsideration tomorrow. I'm leaving messages just trying to find out if someone will take my case.
What I'm really hoping for is that the babesia treatment along with the methylation protocol will get me to a point where I can work.