? @ Dr. Powell in Sac anyone see him?

Discussion in 'Fibromyalgia Main Forum' started by gracepartaker, Sep 10, 2006.

  1. gracepartaker

    gracepartaker New Member

    I am considering going to his clinic. I have CFS not Fibo (yet!) I will have to pay out of pocket so need to think about this seriously. Anyone that has experience (positive or negative) on Dr. Powell I would really appreciate

    Blessings Sally
    [This Message was Edited on 09/11/2006]
  2. mcgee

    mcgee New Member

    Sally,

    I have to agree with the other response that it is kind-of cultish. I also have only CFS and saw Dr. Powell for about six months, beginning September 2005. At that point he was still showing at least some of the videos and trying to convince me that I must have been abused (not true!). Before going to see him I was unable to work, but could leave the house for a few hours at a time. Now I am almost entirely housebound and during the worst part of the treatment was bedridden for days at a time. Although I am much better than I was while on his treatment, I am still suffering "side effects from medications" that I stopped taking over eight months ago.

    Eventually, he had me on about thirty different suppliments and prescriptions. I spent over $1000 on suppliments from his office. If I hadn't had insurance, I estimate it would have been at least $4000 for visits, labs and prescriptions.

    One important thing to know is that you'll probably only see Dr. Powell every third visit. It's required that you see the Physician's Assistant most of the time. I'm sure the brain-fog played a part but I've (literally and actually) had an easier time getting medical professionals to understand my meaning in non-fluent Spanish. The P.A. also told me that CFS patients don't have pain and that my soreness meant I had FM also, apparently not realizing, or choosing to ignore, that two of the CDC's eight criteria for CFS are joint pain and muscle pain.

    I felt like they weren't very knowledgalbe about CFS in general and didn't keep on the developments in the field. They tend to regard CFS and FM as different manifestations of the same illness (I'm not entirely convinced that's the case) and treat CFS like FM. They seemed to be unable to explain my reactions to treatment or contextualize them in experiences of other patients. They just kept telling I had to "be patient and stick it out for a year" and I'd "get my life back," while implying that the huge number of people who drop out are lazy and expect a quick fix. I never got a definitive answer, even though I asked several times, whether people tended to get worse before getting better or got better gradually. To me, this seems like essential information to have before you can decide if a treatment is working.

    Also, at the time I was seeing Dr. Powell, he was really into increasing Nitric Oxide, a neurotransmitter, elevated quantities of which several experts are arguing contribute to CFS. So he was actually giving me more of a chemical that may be the problem in the first place. I don't know about its' role in FM, and it appears there are several variations of Nitric Oxide, but I thought it was worth mentioning because it was the NO meds that really pushed me over the edge. If you want, here are some links about NO:
    www.immunesupport.com/library/showarticle.cfm?id=7455&T=CFIDS_FM

    molecular.biosciences.wsu.edu/Faculty/pall/pall_cfs.htm

    www.immunesupport.com/library/showarticle.cfm/id/4393/searchtext/Pall/

    He prescribes an epilepsy medication for sleep that is known to cause seizures in non-epilepsey patients without disclosing the risk.

    My primary doctor later looked at my labs and had concerns that the CPN he was testing for was antibodies and not the actual bacteria. something about the difference IgG and IgM...

    The most important thing to know about Dr. Powell is that he's super-attached to his protocol. So if you feel like CPN or Myco are the answer, that's probably the place to go. It was my experience that if you don't respond to the protocol the way he thinks you should, you're probably not going to get much help from him. When it became aparent that the huge amount of meds were making me really sick, I calmly explained what was happening and asked if we could talk about making modifications. I had made the appoitment with Dr. Powell, but as I had seen him too much recently, the P.A. took my appointment. The P.A. came unglued and became very belligerent and unprofessional. I was tempted to get up and walk out of the office when he went to fetch Dr. Powell, and I really wish I had. Dr. Powell (who knows what the P.A. told him) arrived angry and they backed me into the corner (I am young, female and alone, so this is kind of threatening). They spent nearly an hour berrating me, telling me I was mentally ill and not dealing with it (hello! the shrinks I went to before CFS diagnosis say I'm fine), telling me there was no other treatment out there and that I was stupid for wanting to give up (even though I just wanted them to help me work their treatment to fit my illness). This was by far the worst experience I've had with the medical profession in 4 yrs and dozens of doctors.

    Another CFS patient I know had similar things to say about being accused of mental illness and not being taken seriously, althought I don't think it was so angry or threatening. It appears she became worse also and I know she developed a really bad case of thrush.

    On my last visit to Dr. Powell, I had copies of my records made and found that a lot of the really severe side-effects (abdominal pain, numbness of extremities, vomiting, loss of conscioussness, etc) were never recorded. During appointments, when they had no recollection of these things, I had thought that they simply had too many patients and didn't read my chart.

    I'm sorry this sounds so bitter, and I really hope my experience was a fluke. It's also possible that these things work much better for FM. I just wish I had walked away sooner and thought that my experience might be useful in case anything about your experience starts looking similiar. I really, really hope it goes well for you.

    :)