Yesterday mom and I went to Dr. Brewer again.
We told him that despite continuing treatment she was not improving.
He told us that some new and exciting things have been discovered (last fall). Recently a research organization has found that 95% of the chronic fatigue and fibromyalgia patients they tested were positive for the XMRV infection. This is a retro virus. It is similar in many respects to the HIV virus that causes AIDS. Brewer is an expert in AIDS and has been working with HIV patients since 1985, so he is very knowledgeable in this area. Mom’s symptoms overlap with babesia, chronic fatigue and fibro.
This virus has been around in animals forever. But it has recently (last 100 years) morphed into something that can infect humans. Mice carry this virus. Mice also carry babesia. So, Brewer thinks that if someone has lyme and babesia there is a good chance that the tick that bit them bit a mouse first. So, perhaps they got this XMRV from the mouse at the same time.
This virus works like HIV in that it suppresses your immune system. Not as bad as HIV, but it does. So, if your immune system is working properly then you cannot fight off something like lyme or babesia like a healthy person can. Therefore until you kill the virus you cannot get better.
They are doing a research study, he hopes it will begin this summer. They are working with Brewer because he is so knowledgeable with HIV. They have asked him to find people to participate in the study, he will put mom on the list.
First thing is sometime (hopefully this summer, but we have to be patient) his office will call mom and tell her to come to KC for a blood test to see if she has the virus.
If she tests positive then they are going to try treatments, probably with the anti-viral drugs that already work for HIV. There are about 25 HIV drugs, he thinks for sure that 2 of them look promising for this virus as well. It is going to be a guessing game at first though.
He said he feels like he has really had an awakening in the last 5 months or so. It is like HIV in the 80’s, it used to be everyone died, now it is manageable. But, these things do take time and study. But, it all makes so much sense though about why there are these few people, these odd ball cases that despite treatment just do not get better. He said all the experts think you guys are crazy, but there are just some people that cannot seem to get better. This may just be why you cannot get better.
He said for now she can continue with her babesia treatments or she can stop, it is up to her. At this point I think he feels that until we know if she has this virus it really is just spinning our wheels trying to treat it. He is having her continue with the antibiotics to keep the lyme from growing.
I am hopeful that this is the answer for why the treatments are not working. For mom and also for the thousands (probably millions) of people that suffer with this and other diseases that can’t seem to get any answers. We will pray for knowledge for the doctors working on this study.
For more info check out their website, it is www.wpinstiture.org
1 comment:
Hi Dee,
You don't know me, but I got the link to your blog from a google alert for babesia. My son is on a waiting list to see Dr. Brewer and I wondered how long you had to wait to see him and how you like him as a doctor. My son has Lyme, babesia, and bartonella, as well as several other co-infections and has been sick for over 7 years. If you wouldn't mind sharing some info with me, I would really appreciate it. I can be reached at bbjndr@hotmail.com. I hope your mom gets better soon.
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