TO: LOLO 500 From CA AnnieB

Discussion in 'Fibromyalgia Main Forum' started by CAAnnieB, Apr 29, 2006.

  1. CAAnnieB

    CAAnnieB New Member

    Hi lolo,

    I typed in your user name & just saw your recent posts to myself & Jeanette! Thought I'd fill you in on what's been happening with our Dr.Powell group...

    We (myself, Jeanette, & Wasabi) actually have met in person at Dr.P's office & then gone out to lunch two times. We are planning to continue meeting once a month.

    The "old" Support Group at Dr. Powell's office disbanded as they all have improved so much & are busy getting on with their lives!!! That's encouraging to us!

    We are thinking of starting up a new support group...The tenative next meeting will be at Dr.Powell's office on Wed. May 17th. We were thinking of meeting at the office first and then going out for lunch together.If you are interested in joining us; I'd recommend calling Dr.P's office to confirm everything that Monday. I can also post here for you when I know for sure if these plans will work.

    The 3 of us who had the huge, Dr.Powell thread going now comminicate by E-mails (We exchanged E-mails in person, not here!) We have really enjoyed writing to each other and getting together in person.The others are such a great support to me! I also have been spending more time at the Cpn help website, as it specifically addresses all issues pertaining to the Cpn treatment we are receiving at Dr.Powell's. There are other Dr.P patients on that site as well.

    The Dr.P. protocol has been a challenge, but I am very pleased to report that I AM feeling LESS overall pain! I also have only had one Migraine since January, when I started the protocol! This is miraculous for me! At times, I have experienced some significant healing with my stomach too. All very positive changes for me!

    The most difficult part of being on the protocol for me has been the intense fatigue I have developed. I have 2-3 "Fatigue Attacks" most days. I become so tired that my eyes slam shut & I have to lie down! I usually fall asleep immediately. This is O.K. when I'm at home, but not good when driving! We are tinkering a bit with supps & meds; trying to improve the fatigue. It could just be part of the whole Endotoxin picture & how my body is reacting to die-off.

    I've had other challenges with reactions to the antibiotics & Niaspan.(Slow-release Niacin) I'm very sensitive to meds, so I always need to go slowly on everything! But in general; I am feeling an overall improvement & there has been enough benefit for me to stick it out longterm. I have been ill for 13 plus years; so it will probably take a long time to clear my body of infection. To me; it's worth it, because nothing else I've ever tried has worked or been anything more than a "bandaid" for symptoms!!

    How are you doing these days? Are you still seeing Dr.P/ Michael? Keep in touch, especially if you'd like to join us at Dr.P's next month! We'd love to have you join us!

    Hugs,
    Annie
    [This Message was Edited on 04/29/2006]
  2. CAAnnieB

    CAAnnieB New Member

    Bumping for lolo...
  3. Jeanette62

    Jeanette62 New Member

    Sorry I missed your recent post to me. I didn't see it and I just saw Annie's. I'm on my way out so I'll fill you in later on how I'm doing on the protocol. Be sure to check back here for an update.

    btw Annie - I'm feeling better today so I'm going to meet my aunt for an early dinner. I think my stomach is ready. Uh oh I just noticed a niacin flush starting on my arms. I haven't had any since getting sick. Geez what timing.

    Jeanette
  4. CAAnnieB

    CAAnnieB New Member

    Hi Lolo!

    Hope you see this!

    Hi Jeanette! I hope you are continuing to feel better. I'll write more later...

    Hugs,
    Annie
  5. CAAnnieB

    CAAnnieB New Member

    Bumping one more time for lolo...
  6. Lolo500

    Lolo500 New Member

    Hi Annie,

    Thank you for your response. I'm glad you were still checking in. I had a feeling your group was communicating privately now.

    I have decided to stop where I am in the protocol. Dr. Powell's program did help me in some ways. I am still taking T3, but have reduced the dosage and feel just as well. I am off all of their supplements and it feels great. After attempting the Flagyl and INH part of program and feeling like I was poisoning myself, I have opted to not go forward with that.

    Since I have made these choices, I have found a supplement program which incorporates many of Powell's supplement recommendations plus a strong amino acid combination. I now have 3 bottles instead of a zillion and it is wonderful and freeing. I feel better now than I had while trying to follow his program. Dr. Warner has also helped me a great deal with HRT. I am doing arobic exercise daily, sleeping wonderfully and finding energy every day of the week. I haven't felt this good since I became ill 6 years ago.

    I don't regret starting Powell's program. It did shed light on some things and brought me to hormone replacement which is a big piece of this puzzle. My body is so happy to be regulating itself once again. I think many of the symptoms were brought on or made worse by many of the things they wanted me to take.

    I hope all you are going through pays off for you. We are all not the same and our bodies do not all need the same things. I will be interested in seeing if that final phase of the program works for you in the long run, so keep me posted. I have another friend who became ill along with me from mold exposure in our classrooms and she is still seeing Michael, but not yet able to tolerate the flagyl and INH part. She is still teaching and has to get to work.

    It is so great to be up with the sun and ready to start your day, knowing you will feel well all day. This didn't happen until I weened myself off of the protocol and supplemented my new stuff. I do still have days when I need to rest more than others, especially on bad allergy days, but nothing like it used to be. I have learned to pace myself somewhat. I never want to get to where I used to be. My world is changing and Dr. Powell and Michael had a part in it and I'm thankful for that. I came to a place where I instictively knew I needed to break away from their path and make my own choices for my body. It seems to have worked.

    Let me know if I can be of any other consult to you. I wish you well.

    Lois

    Feel free to share this with the others.
  7. CAAnnieB

    CAAnnieB New Member

    Hi Lois!

    So good to hear from you & I'm REALLY pleased to hear that you are feeling so much better! Yeah!!! How wonderful it must be for you!

    You are SO right when you say that we are all different and respond in varied ways to treatment. Just within our small Dr.P group; there are major differences in how we have responded to the treatment protocol. Much to Michael & Dr.P's credit; I have observed that they tailor each person's treatment to meet each individual's needs/ reactions.

    Earlier in the week; I was having such nasty symptoms from my treatment. I felt so incredibly lousy that I felt like "tossing in the towel"! I too feel like I am poisoning my body at times. That's certainly how it feels! I can relate to your experience!

    When I started with Dr.Powell's treatment; I decided that I'd give myself a minimum of 6 months on the protocol before making a decision re: continuing in this direction. It has been 4 months so far & this past month has been the most difficult...mainly due to being on the full treatment for Cpn...(All supplements, NAC, INH, & Flagyl). I have reacted VERY strongly to all anti-Cpn meds...I even reacted strongly to the T3! I am also having a tough time taking Niacin (or Niacinamide or Niaspan). I believe that my Cpn load is pretty high; thus I am reacting so strongly to the meds & supps which inhibit it's existence! I am certainly hoping that these reactions mellow out after awhile...I absolutely couldn't be doing this protocol if I were working! Most days; I battle severe fatigue attacks. (Another side effect of my treatment!)

    It is a delicate balance ...Treating aggressively enough to progress with killing off the chronic infection(s); yet not causing such extreme Endotoxin/ die-off response as to become incapacitated! We are still trying to find that balance for my body! I DO feel very good about Michael's advice to me when I call with a S.O.S.! He always returns my calls promptly & directs me to back off of whatever is causing my reactions/ symptoms.

    Again, I am VERY happy for your improvement! Are you working with a different Dr. or have you figured out the right combo of supps on your own? Could you please share what you are taking now that is working so well for you?

    If I lived closer to Dr.Warner; I would definitely go for a hormonal consultation. I keep forgetting to call his office to find out if they could recommend someone in my area for a similar approach to hormonal treatments. If there is no one in my area, I may make the long drive eventually. Jeanette has been pleased with her care with Dr.Warner also.

    Thanks for keeping me (us) up to date with your progress. I hope that you continue to improve and heal.I am rejoicing with you over your newly-acquired good health! I'd be very thankful to you if you could share what parts of Dr.P's protocol worked for you & what supplements you have added which have made such a positive impact on your health!

    Best wishes & Hugs,
    Annie
  8. CAAnnieB

    CAAnnieB New Member