I am among the GMA study group. No results for one year, then suddenly 1 wk before Mikovits presentation a flurry of us received "negative" results, but we're still testing (??) Confusing. More confusing is that the original Mikovits research showed findings of 67% to 95% positive in WPI cohorts. Yet the majority of GMA cohorts are apparently negative (???) If true, then this clearly suggests XMRV is not a primary factor in this illness. Or, something odd happened with the GMA cohorts (???) re compromised samples misplaced as some have suggested.
I agree with what other GMA patients have posted. They are trying, but don't have all the answers so please don't assume they do. I have paid over $15,000 there and am still bedridden and very sick. Heartbreaking as I too really thought they were most likely to have answers. They may have more than many, but don't have it all. It is a very complex illness as we all know. That said, they did know to have infected root canals checked out. Unknowing to me I had 2 very severely infected root canals...an additional burden on the immune system. Treatment is very expensive. I hear prices are steadily going up. They do not take any insurance or Medicare. In all fairness, I am sure there must be some success stories among their patients, but in all honesty I personally don't know of any who are well. Have met many patients there through the years. The one thing we all have in common is that we are very sick, and we love the doctors and staff there.....very compassionate care.....IV room nurses are outstanding......but recoveries, not so much.
Many patients feel a bit guinea-pig with trials of this and that with costly treatments. But, that is the only way with this illness to find what combination of things might give relief. Treatment seems pretty much focused on finding relief and hopes of finding a cause.
FIrst appts are typically somewhere around $900 now from what I hear. I know mine was over $900. Followups are around $300...frequently as high as $400 - $500 after the trial things are added to bill. They do provide Super Bill Invoice for submission to your insurance if you have out of network coverage. They have an in-office IV room as well lab draw room. Offer many complimentary alternative services along with integrative M.D.s. Lots of staff changes this past year while growing their organization. Resulted in a bit of office functional transitional chaos which will settle over time.
Oh, they also do phone consults, but rates are the same as office visits. Office visits are categorized as brief, general, extended fee scale. Since the growth expansion everyone I know says all of their appts are pretty much charged at the highest extended visit scale....even phone consults. The last two phone consults felt a bit like "running the clock out" to ensure the higher rate. A bit frustrating. Not complaining. Am grateful for their dedicated services. Just making sure others know the cost factors before you sign up in the blind.
That said, you will definitely get care where they think outside of the box, care about their patients, try to accommodate special needs, and they have a comprehensive depth of understanding about the limitations and challenges with this illness. Amd, you can email your doctor. For service and compassion they get A+.
However, they are wired in with CFS and lyme docs across the country...as evidenced by the Mikovits presentation. If a breakthrough happens, GMA will be among (if not THE) leader on the west coast in CA.
