CAAnnieB and others who see Dr. Powell in Sac.

Discussion in 'Fibromyalgia Main Forum' started by gracepartaker, Oct 5, 2006.

  1. gracepartaker

    gracepartaker New Member

    I am going to be starting with Dr. P. in November. I would appreciate any advice from others who have seen him.

    I am sensitive to medication (like most of us) and am concerned about starting so many things at once. Any advice.
    Of course I'm excited and hopeful. Of to feel better

    Blessings, Sally
  2. gracepartaker

    gracepartaker New Member

  3. Hoyin

    Hoyin New Member

    He was the first doctor to really listen to me.., but his office sold me supplements, and then he wouldnt really prescribe pain medication saying in his opinion they dont work long term yadda yadda and I have an ulcer so its really opiates or suffer, and they made me watch videos and told me that my FMS had something to do with childhood trauma and wanted me to also come to support groups. I'm all for support groups, but you cannot tell me its not all in my head but it was caused by something in my head at the same time. In other words, things didnt add up for me and I didnt feel comfortable there. I think he does listen though, and I think he's got some interesting ideas on treating fibro. I've considered going back.he listens and some of his treatments were excellent...but for me, personally, its to..um, cult-like.
  4. gracepartaker

    gracepartaker New Member

    all responses are really appreciated.
  5. CAAnnieB

    CAAnnieB New Member

    Sally,

    I'm not feeling very well (understatement!) right now, so I'm not very enthusiastic about Dr.Powell's protocol at the moment! I have been being going to his office since January of this year.

    He has drastically changed the focus of his treatment program since a few years ago. What Hoyin stated is what I have heard from other patients who have been with him for years...He has changed his focus & no longer stresses the psychological aspects of treatment. He is now very focused on primarily treating chronic Chlamydia Pneumoniae & associated Mycoplasmic infections. He theorizes that almost all FM & CFIDS symptoms are caused by these infections.

    There is no longer a support group at the office. A few of us meet monthly for an informal lunch/ get-together. We actually met here on this board! It has been great to have their support because this treatment protocol can be quite challenging and rough.

    I'd like to share more, but I'm feeling pretty crummy so I'm going to sign off for tonight! I'll check back here tomorrow & share more, OK?

    I DO believe Dr. Powell is on the right track in treating these underlying infections.

    Hugs& Blessings,
    Annie
  6. gracepartaker

    gracepartaker New Member

    I really understand about not feeling well. Thank you for taking time to respond. I hope today is a better day.

    What would be wonderful for me is to have a way to communicate with the group that sees Dr. P. I know I am going to have many questions. The main one being right now how do you know if when you're feeling bad is that because the medication is working or because it's not. Do you feel you can call Dr. P and get assistance?

    Thanks so much for answering. This is quite a journey we are all on. So grateful for the faith that sustains.

    Blessings Sally
  7. gracepartaker

    gracepartaker New Member

  8. CAAnnieB

    CAAnnieB New Member

    Hi again,

    I'm feeling much better today! I will attempt to summarize my experiences with the Cpn protocol at Dr.Powell's...

    I started with him in January. The protocol consists of treating Chlamydia Pneumoniae/ Mycoplasma infections, treating Thyroid imbalances with T3 therapy, warding off/ treating yeast, improving sleep issues & pain management. Dr.Powell does a thorough first exam & history-taking session. He orders appropriate blood work. Once they get the blood work results, they start you on the Cpn protocol, which addresses all the above-mentioned issues.

    Dr.Powell's approach is to use a combination of antibiotics, natural supplements (LOTS), minerals & some medications. His treatment protocol is based upon his own research, others' research & his experiences with his patients. He is continually tweeking/ refining the treatment protocol. It is experimental treatment. You sign a form stating that you understand that the treatment is experimental. Some people are comfortable with this...Others might not be...

    I have had a tough time with all aspects of the treatment. I could not tolerate the side effects of the T3, even tho' my labs & symptoms clearly indicate a need for T3. I hope to try it again in the future. Every anti-Chlamydial agent I have taken has caused major reaction symptoms. I have had some times during the past 9 months when I have felt a bit of improvement. The majority of the past 9 months, I have been worse than I was in January. The list of symptoms is too long to type! It has been grueling. There is no way that I could have gone through this while working. (I'm on Disability.)I will add that I have been "sick" for over 13 years. I do believe the longer one has been ill; the longer it will take to get well.

    This being said, I DO know of some patients of Dr.P's who have had incredible improvements in their health! One of my friends has had an 80% improvement since she started with Dr.P about 18 months ago. Another woman I met recently went from being so incapacitated by her fatigue (on the couch/ in bed all day) to being able to function fairly normally...with a lot of pacing of activities, of course...she hasn't returned to work, but is way better. There are others with similar stories of recovery.

    This treatment program usually takes a minimum of 1 year. If I continue, it is becoming evident that it will be taking me much longer than 1 year to reach my goals. I'm not looking for total recovery...I'd be happy with any improvement! Anyway, they are very upfront with patients about it not being a quick fix.

    The office is run extremely efficiantly! The receptionists/ assistants are friendly & helpful. Messages are relayed promptly. I have only had 2 appointments with Dr.Powell. The rest of my appointments have been with his P.A., Michael. He is terrific. I can't say enough positive things about him! If I have concerns & call the office; Michael or Dr.P return my calls quickly. I appreciate all the handouts they provide which explain the rationale & science behind all the treatments they prescribe. They offer supplements for sale at the office, but you are not required to buy them there. Their prices are reasonable. I've ordered a lot of supps thru Puritan's Pride online & have gotten great deals there.The supps not available online I buy at the office.

    I wish you well with your journey to wellness. I am feeling very overwhelmed lately...I've decided to start over & go very slowly with adding in supplements, etc. A few weeks ago, I was taking 80 pills each day on the protocol. My stomach/ intestines protested, so I'm backing off for a bit.

    I think the issue about starting so many things at once is valid. Maybe you can discuss this at your first visit...Once you get onto the protocol full-swing, it IS very difficult to seperate out what is causing reactions. It's very complex. You might want to go to the website cpnhelp.org. Dr.P will tell you to go there for info/ support. There is tons of info there! I hope what I have shared has been helpful.

    Blessings & Hugs,
    Annie
  9. Wasabi

    Wasabi New Member

    Hi Anne! Nice to see you online! I don't log onto this site very much anymore, but every time I do, you seem to be here around the same time. :-D

    Sally, I'm the person Anne mentioned in her post as having experienced 80% improvement. I should probably clarify that. I am currently functioning at about 80% of "normal" (whatever that is). When I started seeing Dr. Powell in May of last year, I was functioning at about 40% of normal. So, my overall health has improved greatly. I believe much of my improvement came as a result of Dr. Powell's treatment program.

    That said, lately I've been frustrated at being on a plateau for several months now. Dr. Powell's P.A. who I see regularly seems to think that I'm just around the corner from being ready to graduate from the treatment program, but for some reason I just can't seem to quite get there. We can't figure out why. I'm ready to get on with my life, and it's so frustrating to feel shackled by this illness and the treatment itself, which is challenging.

    I've faithfully followed Dr. Powell's evolving protocol since May of last year, and I do believe he's on the right track. The treatment protocol does take a lot of perseverance though, and it's expensive. Anne mentioned being on 80 pills a day. I'm on significantly fewer pills--probably because I'm farther along in the treatment and I was told I could stop some of the supplements. Still, I spend on average about $200/month on medications and supplements alone.

    There have been times when I've been so tired of taking so many pills everyday that I wanted to give up on the treatment. However, I've stuck with it, because Dr. Powell seems to be genuinely pursuing the latest research on infections and FM/CFS. In addition, everyone in the office is polite and caring. Dr. Powell and his P.A. are rare finds in this day and age of medical care. I think very highly of them. Whenever I've called with questions, Dr. Powell or his P.A. has usually called back within hours--or by the next day at the latest.

    If I can maintain this current level of health as I inch closer and closer to the finish line and am slowly weaned off the medications and supplements, the very long, trying journey will have been worth it.

    There was a period earlier in the treatment after I had made significant leaps and bounds in improvement when I could recommend Dr. Powell without reservation. Now, being farther along in the treatment, I recommend him with the knowledge that it's a challenging course. Sticking to the treatment program has to be a conscious choice, because improvement on this protocol doesn't come without perseverance and sometimes experiencing the tough side effects of treatment. Despite my current frustration and my general sense of mental fatigue from being on this treatment for almost a year and a half, however, I recommend Dr. Powell.

    I often think of the example of cancer and chemotherapy treatment. The treatment itself is very hard on the body, but if you can survive the treatment, you're more likely to survive the illness. Dr. Powell's treatment is hard on the body too, but if you do indeed suffer from chronic infections leading to FM/CFS and can tolerate the treatment, I think you'll see improvement.

    Anyway, that's my perspective on Dr. Powell and his protocol. Best wishes to you in your treatment! I hope that you'll have a good experience with him and that the treatment will help you on the road to recovery.
  10. gracepartaker

    gracepartaker New Member

    Wow that's for so much feed back. I really appreciate hearing about all of this. I'm aware of how rough this might get. Thanks for all your suggestions.

    I wish you both healing and wholeness. Sally
  11. CAAnnieB

    CAAnnieB New Member

    I'm so glad you replied to this post!

    Sally, feel free to ask any questions before or after you get started with Dr.Powell. We have a small group of us who get together monthly for lunch & support. If you'd like to join us, maybe you could leave your E-mail address with Dr.P's receptionists & we would have a way to contact you. (They know about our little group get-togethers!)

    Blessings & Hugs,
    Annie
  12. gracepartaker

    gracepartaker New Member

    My appt is Nov 6 and I will leave my e-mail address. Thank you so much. I went to the cpn sight. lots of good reading. Thanks for mentioning it

    Sally

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