Expert: Suzan Jackson - 11/7/2007

Question
QUESTION: Suzan:

1) I have had ME/CFS for 8 years and have been debilitaded for 6 of those years. I am on Medicare; how will i get a doctor and what kindof a doctor, will order me these specific anti-viral meds I saw in another question? I have no hope they will ever pay for this specific care I need, even a doctor who believes in CFS; since the government is paying for it.  
I have been through all of the basics; brain MRI, rhuemitoid doctor and all of the others for diagnosing.

2)  Have you ever read about mycoplasma fermentins incognitos infections? ( professor Nicholson and professor Scott)?

thank you for any direction.
Blessings-
Leah

ANSWER: Dear Leah -

Sorry for the delay - I haven't been feeling well the past couple of days.  Sorry to hear you've been so ill yourself.

Generally, infectious disease specialists are the ones who know the most about various infections and which anti-viral medications work against which viruses.  Many CFS specialists are now gaining greater understanding of this field, with the latest research linking some cases of CFS to various infections.

The infections that are known to sometimes be involved with CFS (that we know of so far) that you should be tested for include:
-Lyme disease
-Epstein-Barr virus (EBV)
-HHV-6 (human herpes virus 6 - different from regular herpes)
-maybe some mycoplasma infections

The infectious disease specialist I saw tested both my son and I for a certain type of myscoplasma that has been connected with Gulf War Syndrome (but not yet officially connected to CFS, though it's possible).

As for specific CFS doctors, there are more and more that understand and are treating infections.  If you can tell me what state or general region of the US you live in, I can guide you to some doctors close by (hopefully).

In the meantime, here are some of the websites I've found useful in understanding the link between CFS and infections:

http://www.hhv-6foundation.org/hhv6cfs.html

http://www.wisconsinlab.com/physcfs.htm

http://www.cfs-recovery.org/mycoplasma.htm
(not a medical resource, but a CFS patient sharing his experience)

http://www.davidsbell.com/LynNewsV3N1.htm

http://www.cfsviraltreatment.com/

You might be surprised to find that some of the medications could be covered by Medicare because the medicines being used are all FDA approved and currently available.  My insurance company has covered Valcyte and Valtrex for me.

Finally, a word of warning:  some of these medications, particularly Valcyte, can be quite toxic.  I quit Valcyte after two months because my white blood cell count dropped so low.  Also, most people who benefit from these medicines initially experience a severe worsening of their symptoms that can last for months in some cases.

I wish you lots of luck in finding an effective treatment for yourself.  If you'd like some recommendations of specific doctors, let me know generally where you live.

Best Regards -

Sue

www.livewithcfs.blogspot.com


---------- FOLLOW-UP ----------

QUESTION: Sue,
thank you for this info. your answer is very hopeful to me.
I am located in LA county, Los Angeles CA.  I can also go to near surrounding counties.  If you do have any connects with doctors I could use the lead. thank you for your time; and good luck with all this.


Answer
Hi, Leah -

I'm glad my response was helpful to you.  I'm in bad shape myself today - not sure what caused this crash.  I think I have a very good recommendation for you in the LA area.

This summer, I corresponded with a man from Italy who has CFS.  In August, he made a trip to the U.S. to visit a doctor in L.A.  I checked with him this morning, and he seemed very pleased with this doctor.  While he was there, the doctor tested him for all sorts on infections, plus immune system tests.  He tested positive for many of the infections I mentioned to you yesterday, including Lyme, EBV, and HHV-6.  The doctor has set up a treatment plan for Marco, including coordinating with a local hospital in Italy.

Here is the Dr. Holtorf's website:

http://www.hormoneandlongevitycenter.com/cfidsfibromyalgia/#10b

The website includes a lot of information about CFS and his approach to treatment.  Marco also e-mailed me several interesting papers written by Dr. Holtorf.  If you'd like for me to send them to you, go to my blog (listed below), click on my profile, and use the link to send me an e-mail.  I'd rather not include my e-mail here.

This doctor sounds pretty good.  I wish you the best of luck in finding some answers and some relief!

Sue

www.livewithcfs.blogspot.com