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Lyme Disease Message Board


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Hi, Lilly:

Yes, I have been to this center, if it is the one you mention. I personally would not refer a loved one there.

I know some people swear by this doctor, so let me just reiterate that this is just the abridged story of MY personal experience. Only YOU can make the right decision about your own healthcare.

Consider this: There is a sign posted on the check-out desk offering patients a sizeable discount on their next appointment if they post complimentary comments to the center's website. I find this barely tolerable at my mechanic. But at my doctor?

My private, personal, cynical and indefensible suspicion, based on my personal experience (which may not be typical), is the clinic you reference are using their patients' case files as unofficial research data; I was assigned a standardized treatment protocol that had very little to do with my own illness, but which--it seems to me--would add data rather nicely into an ongoing validation process for that protocol.

I was really ill when I went. More than $700 in blood tests were ordered. I subsequently found out that several of the more expensive ones are not considered diagnostic or reputable, even by many leading CFS researchers.

I was "diagnosed" with Chronic Fatigue even though my legitimate bloodtests actually showed another diagnosis that the SSDA considers "exclusionary" of CFS, meaning SSDA would reject a disability claim.

Instead of the medically indicated treatment, I was at first "prescribed" hundreds of dollars of proprietary vitamin supplements, which I refused. I was also prescribed hormone replacement that I was supposed to purchase directly from their in-house pharmacy. These medicines were supposedly unique and better (bioidentical, or so the staffer I saw said.)

But when I spoke to the in-house pharmacy staffer, that person told me that one of the meds was just a generic pharmaceutical I could from my local pharmacy; and the other a harder to find but also available version of a common hydrocortisone pill. When I checked my local CVS pharmacy, I was stunned. The HMG meds ran almost $2 pill, or nearly $200 on my schedule. The CVS meds? Less than $30/month.

It is my personal opinion that my doctor should not be permitted to "prescribe" vitamins that can only be purchased in his office; I think this represents a clear conflict of interest. However, it is legal.

I also feel concerned when I discover that my doctor, who has ordered me to purchase almost $1000 in blood tests, some of them considered medically unnecessary, is considered an expert witness on false positives in blood and urine drug tests. This seems kind of illogical to me.

If you really have Lyme disease, there are real specialists you can see; in my opinion, the clinic you refer to specializes in finding CFIDs everywhere, and in treating the disease whereever it may, or may not, exist. I have strong opinions about why this might be.

But chronic Lyme disease has gotten good media coverage lately (there was also a fictionalized case presented recently (2006-07) on a Health Channel program--I think it's called "Mystery Diagnosis" by a production company called GRB Entertainment; you might be able to track down that diagnosing doctor via GRB's website). As I'm sure you already know, treatment for Borrelia is longterm oral and/or intravenous anti-biotics. The blood tests are not considered reliable, showing too many false negatives.

I wish you the very best care and luck in getting the treatment you deserve and need. Trust yourself. In closing, it might interest you to know that my supposedly chronic illness (which supposedly would have required multiple $300 office visits, and $1000s in bloodtests and medicines and supplements) resolved OVERNIGHT when I was finally given an $11 course of doxycycline, and stopped taking a supposedly "necessary" anti-fungal!

But I say again: Don't trust me. Don't trust gossip. Or flattering magazine articles. Trust yourself.





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