UPDATE: Dr. Michael Powell--Sacramento, CA

Discussion in 'Fibromyalgia Main Forum' started by Wasabi, Oct 31, 2005.

  1. Wasabi

    Wasabi New Member

    Just thought I'd update everyone on how I'm doing with Dr. Michael Powell's treatment for fibromyalgia.

    I started his protocol in May, 2005 and am on a mix of antibiotics, supplements, charcoal, and lifestyle changes, which you can read about in my profile and previous posts.

    In a nutshell, I'm doing great! I'm definitely seeing improvement.

    -Protocol Update-
    Dr. Powell recently revised the antibiotic portion of his protocol to include INH. (This is a patented drug used typically to treat TB, but it has been shown to exterminate Chlamydia Pneumoniae infection, whereas previous treatment would only send it into permanent remission.)

    So, I've been switched off of Doxycycline and Rifamin and replaced those two antibiotics with INH. Thus, my antibiotics are now Amoxicillin, INH, and Flagyl.

    This protocol revision reflects that by Charles Stratton at Vanderbilt University in his treatment of Chlamydia Pneuoniae.

    -Energy Levels-
    Overall, I'm feeling much better. Some days, I have a surprising amount of energy, and I've been able to do my freelance work more regularly. I think this is directly related to the Flagyl portion of the protocol.

    I'm cycle on and off of Flagyl: five days on, two weeks off, five days on, etc. During the five days on, I'm usually exhausted and sometimes sick to the stomach. (This is expected, as it is probably a die-off or Herxheimer reaction.) Then, for up to a week directly after I stop the Flagyl, I feel amazingly good. My fatigue levels go from about an 8 on a scale of 1-10, with 10 being extreme fatigue (on Flagyl) to about 3 (off Flagyl).

    This energized state lasts for about a week and gradually tapers off. Although I really dislike taking the Flagyl, I actually look forward to it, because I know I'll have a string of good days directly following it.

    -Pain Levels-
    I have Oxytocin injections for pain. It's a hormone that takes the edge off the pain and relaxes my muscles a bit. In the beginning, I was having shots 3 times a week. They made a huge difference in my pain levels, and I would really look forward to the next one.

    Well, I'm happy to report that I haven't needed the shots nearly as frequently as before. Now, I usually go a week or two between shots, simply because I'm not in that much pain anymore. What a blessing! I think I'm actually making steady progress toward recovery.

    -Brain Fog-
    My brain fog, although still a problem, isn't as severe as before. I feel like I'm actually able to use my mind for work, whereas there was a point in the past when I seriously wondered if I would have to stop working due to my inability to analyze through issues. My brain isn't as sharp as it once was, but it's not nearly as foggy as it was a few months ago.

    Well, that's my progress report. I honestly think that this treatment is working for me and that I will be able to maintain at a much better state of existence than before. I hope to be able to keep reporting good news.

    Take care, everyone! (I would love to hear from more Dr. Powell patients too.)
    [This Message was Edited on 10/31/2005]
    Waynesrhythm likes this.
  2. Wasabi

    Wasabi New Member

    Hoping to hear updates from others....
  3. Jeanette62

    Jeanette62 New Member

    After reading your info about Dr. Powell, I'm considering changing docs and going to him. My rheumy has been fairly good, but she doesn't seem to have knowledge about how the adrenal system ties into FMS and I need help with this to get well.

    I live a little over an hour away from Sacramento in Oakley. My main dilema is in a month the fog will be here and that gets a little scary driving this time of year as well as more rain.

    I was in the process of going to a naturepath doc in Concord who is up on the adrenal system issues, but it may not be covered on my insurance. Dr. Powell is covered under my PPO plan so that is a plus as well.

    How much of Dr. Powell's treatment plan is out of pocket expense? Do you think it would be worth the drive? How long of a wait do you typically have at his office when you have for an appt.?

    Any help with the ?? would be appreciated.

    Thanks,

    Jeanette
  4. Wasabi

    Wasabi New Member

    Jeanette--and others who might be interested,

    Yes, I definitely think it would be worth it for you to switch to Dr. Powell, because he focuses on trying to treat and eliminate underlying causes. The majority of his patients get back to a pretty much normal life if they stick with his treatment plan for about a year. (By normal, I mean, off of painkillers, sleeping aids, etc. and living an active life like everyone else.)

    You should know that Dr. Powell's treatment plan requires a lot of time and effort on the patient's part. For example, I take supplements/pills 7 different times every day. I spend about $200 per month on supplements and medications--after insurance. My diet is extremely limited in order to stick to the Candida diet, plus avoiding my food allergies.

    It's not easy, but the reward of diligently persevering through the treatment is that, most likely, you'll see positive results, like I have. I know others who go to Dr. Powell, and they are more lax about the treatment, and they are not doing much better. Those who stick to it--all of it--seem to see dramatic results in about three months and continue to improve until they no longer need to see him!

    Anyway, to answer your questions, the out-of-pocket expense is about $200 for me, mostly for supplements, since my insurance doesn't cover that. Part of why it's so expensive is that I can't use the powder supplement drink, so I'm having to take everything in individual capsules. If you can tolerate the powder drink, your costs will likely be significantly less than mine. It will depend on your insurance, of course, but all my tests, antibiotics, and visits are covered by my PPO.

    As far as a wait in the office, I schedule my appointments early in the morning and haven't had to wait more than five minutes every time. Others have reported a long wait in the afternoon--probably because they take their time with each visit. So, if at all possible, I would recommend a morning visit.

    I personally think it's worth the drive. I feel lucky to have found Dr. Powell. I was very discouraged before I saw him, and he gave me hope that I might become better. Both he and Michael (Dr. Powell's P.A. whom I usually see on my visits now) have been most respectful, knowledgeable, and considerate. You can call with questions on the phone, and they will get back to you promptly. I can't say enough about them, based on my own experience.

    Here is Dr. Powell's web page:
    http://www.fmtlc.com/contact.html

    I wish you all the best! Keep us posted.
    Waynesrhythm likes this.
  5. Jeanette62

    Jeanette62 New Member

    I have to leave in about 5 min, so I was glad I checked the computer 1 last time before leaving. I did call his office already, but got the answering machine. Hopefully I can get an appt. soon. I really want to start on the road to feeling better. I've already made a lot of lifestyle and diet changes since last Dec., I'm sure I am up to a few more. I hope I can tolerate the supplement shake, because swallowing a lot of pills is hard for me especially large pills....they get stuck.

    I'll let you know how it goes.

    Thanks again.

    Jeanette
  6. Juloo

    Juloo Member

    I saw that you were taking INH/Isoniazid and wanted you to be aware that with this drug there is a small percentage of protracting medically-induced hepatitis. I know this because it happened to my mother (we were both on INH for a long period of time when my father was diagnosed w/TB in the late 1960s).

    Apparently the odds are around 1%, and those after 35 are most at risk -- those over 50 are most likely to have permanent liver damage.

    Please acquaint yourself with the warning signs of hepatitis and just BE CAUTIOUS. I would hate for you to trade your current issues for an even worse situation.
    Waynesrhythm likes this.
  7. Wasabi

    Wasabi New Member

    Thanks for mentioning this, Juloo.

    Fortunately, I think my doctor is aware of this. I've been told to keep an eye out for and report any possible symptoms of liver problems from all these antibiotics.

    Plus, he has me take a blood test every month for my liver. It's a standing order, and so far, my liver is in "perfect health," in my doctor's words. Hopefully it will stay that way.

    Thanks again for mentioning this. People do need to be aware that any drug has potential side effects and dangers.
  8. Wasabi

    Wasabi New Member

    Are there any other Dr. Powell patients around?
  9. Lolo500

    Lolo500 New Member

    Dear Wasabi,

    I have been seeing Dr.Powell and Michael since Aug.2005.
    I am on many of the same meds you are. I have just recently added INH (1/2 tablet) and have Flagyl ready to go.

    Couple of questions for you. Are you still on T3 treatment? I built up and then cut back and am doing well with my energy.

    Did you test positive for Clamydia Pneumonia?

    Did you notice any differences when you started the INH?

    How did that compare with what you felt after starting the Flagy?

    I barely noticed anything from the INH. Something made my blood pressure increase, and I'm trying to identify that at this time. It went up after adding the INH and B12 sublingual. I backed off both to see if there will be a difference. I also stopped the T3. We had to do some traveling this weekend, so I figure after tomorrow I'd have the best reading.

    After reading your post I'm very anxious about starting the Flagyl. I did test positive for Mycoplasma, but not for Clamydia. I understand Dr. Powell's theory about both being present anyway. I was just wondering if the reaction to Flagyl would be greater for those testing positive to Clamydia. I plan to bring this up at my next visit.

    Thank you for your posts. I, as well, have seen improvement and am very pleased with the treatment center.


  10. Wasabi

    Wasabi New Member

    Lolo, thanks for writing. It's great to hear from other patients of Dr. Powell, and I'm glad to hear that you've seen improvement as well.

    In answer to your questions:

    1.) Yes, I'm still on the T3 replacement. I still feel the effects of the T3 tapering off in the late afternoon and seem to need the afternoon dose. But at my next visit, I need to ask how long I will likely be on T3, just to know. I'd need to check my notes, but I think I've been on T3 for two months or so.

    I haven't had any of the so-called indications of change, such as increased heartbeat or jittery feeling, so I've just stayed at my current dosage.

    Are you completely off the T3 now, or just at a reduced dose?

    2.) Yes, I tested positive for Chlamydia Pneumoniae. I'm not sure if I was tested for Mycoplasma or not. It was pretty apparent that I at least had Chlamydia Pneumoniae, and so the treatment has been somewhat focused on that particular infection.

    3.) I haven't noticed any difference at all with the INH instead of Doxy and Rifampin. Of course, the INH basically replaces the Doxy and Rifampin, and I had been on the first two for 1-2 months (?) already when I switched. I think I *did* notice improvement with Doxy and Rifampin, so it might be that most of the dramatic difference had already been made? I don't know.... In any case, I think the difference with INH is long-term--Chlamydia Pneumoniae will be eradicated instead of being in remission, so perhaps one wouldn't notice much of a difference in the short run.

    By contrast, adjusting to Flagyl was the most difficult of all the medications, but it also had the greatest effect. My first session with Flagyl was really awful--I was so nauseous and had a very upset stomach. But the second session was quite a bit better. And the third session was even easier, even though the dose was higher. I think it just took my body a while to adjust. For me, it's totally worth it, because I feel so much better in the days directly following Flagyl.

    Just so you know, Flagyl starts to melt right away when you pop it in your mouth, and it tastes terrible! I try to swallow it with water as soon as possible, but the after taste makes me gag. Still, I actually look forward to going through those five days of Flagyl for the good days that follow. :-D

    4.) I don't know if one's reaction to Flagyl would be greater if Chlamydia Pneumoniae tests were positive. I'm not sure if Flagyl is specifically aimed at Chlamydia Pneumoniae or if it also treats Mycoplasma. Hopefully, you won't have a difficult time adjusting to you. And hopefully, you'll benefit from it as well.

    Keep us posted on your progress! Thanks again for sharing.
  11. bpmwriter

    bpmwriter New Member


    does the INH require a shorter-term treatment than the doxy or are we still talking 6 months to a year??

    eddie
  12. CAAnnieB

    CAAnnieB New Member

    Hi there,

    Do you have an update for us on your progress & treatments? I hope you are still making improvements in your health.

    I have an appointment (my first) with Dr. Powell on Tuesday, January 3rd! I'm really looking forward to seeing him & getting his impressions of my Fibro...I've seen so many Dr's over the years, but he sounds like he's more up to date on diagnosing & treating underlying issues.

    I'm hoping the flood waters recede by Tuesday!

    We are close to the Russian River here in Healdsburg (Sonoma County), but there is no flooding in our town.

    Wasabi, do you have any driving tips? I asked the receptionist for directions & I will do a Map Quest search.

    Hoping to hear any updates...

    Blessings & Hugs,
    Annie
  13. Wasabi

    Wasabi New Member

    Hi Annie (and everyone else),

    I'm pleased to report that I am still making progress with Dr. Powell's protocol.

    For Christmas, my husband and I traveled to Southern California by plane and had a busy schedule with family for five days. I was surprised at how well I did with all the traveling and being around people constantly for so long. Granted, I was able to rest when I needed to, but still, I know that seven or eight months ago, such a trip would have had me flat in bed for days. This was my first trip in as long, and it gives me hope that I'm getting better.

    Yesterday, I did overdo it by walking around the mall for three hours. It was cold and pouring rain outside, and by the time I got home, I was nauseous and completely wasted. That tells me that I'm still far from 100% but also that I'm doing much better. A few months ago, I could barely make it through one department store alone.

    As far as driving tips, Annie, the directions the receptionist gave you should be good. Those are the ones I use to get there. You should know though that you can't park in the parking lot of the office--it's all reserved. You can park, however, directly in front of the building, which is easy and actually closer. What we usually do is turn into the parking lot, pull into a spot to turn around, and turn right onto the street to park on the street directly in front of the building.

    The office is on the second floor, and there are both stairs and an elevator.

    Anyway, I hope your trip goes well and that it will be worth it. Be sure and tell Dr. Powell how far you've come in order to see him, and I think he will make sure your time is worth it. I hope so.

    Also, if you are given prescriptions to fill at Knott's Pharmacy, the receptionist can give you directions. It's nice that Knott's Pharmacy will mail you your prescriptions--with an extra fee--but sometimes I make use of that. It saves me a trip downtown.

    Well, do keep us posted. I'd love to hear how your visit goes. Let us know. Take care! (And I hope you're safe from the flooding!)
    [This Message was Edited on 12/31/2005]
    Waynesrhythm likes this.
  14. Wasabi

    Wasabi New Member

    Bpmwriter, That's an excellent question about INH.

    My understanding is that it replaces Doxy and Rifampin, so we take it for the remaining time of the treatment.

    In other words, if I am supposed to be on the Clamydiae Pneumoniae protocol for nine months and I had been taking Doxy and Rifampin for five months, I would take INH for the remaining four months. I hope that makes sense.

    But rather than dictating a specific length of time, Dr. Powell bases it on how you're responding to treatment. Once you no longer shown signs of infection, then you'll keep taking it for a couple of months. For most people it's 9-12 months total for the treatment--some require less; others more.

    Hope this is helpful. Best wishes to you!
  15. Jeanette62

    Jeanette62 New Member

    Hi Wasabi and others new to Dr. Powell,

    I started seeing Dr. Powell in Nov. and his physician asst. Michael McClanahan at the last 2 visits.

    I was glad to find he knows to run all the thyroid tests, although he had Dr. Warner treat that problem. I was surprised to find that he knew to check my iron and I had so many symptoms of anemia and I was deficient in Vit D. I guess many times iron problems show up in a regular CBC blood test, but many times with Chlamydia Pneuoniae it shows normal in the CBC but the ferritin levels are low and the iron binding capacity is high.

    For me learning doing the Vit. B12 shots myself was intimidating and by the time I got everything to do it I had chickened out. I finally figured it out and it isn't so hard after all.

    Wasabi do you take N-Acetyl Cysteine (NAC) too instead of Amoxicillin?

    I was hoping to start the INH after Xmas, but my liver blood work came back elevated so I have to wait. I'm not sure why my liver is having problems - I haven't drank alcohol in years and even before that rarely had a drink. There aren't any meds I can think of that would have elevated it. I am taking Milk Thistle to see if it lowers it and then having another blood test in a few more weeks. I was really hoping to get started before I start a new job, but I'll just have to deal with it when the time comes.

    To those of you new to Dr. Powell - I think he is very thorough - much more than any other doctor I've seen so far. He also referred me to a Dr. Warner in Marysville, an OB/GYN that specializes in balancing your hormones. He to is excellent. It was a long drive for me to Dr. Warner's, but worth it. It is reassuring to be in such competent hands finally.
    Waynesrhythm likes this.
  16. CAAnnieB

    CAAnnieB New Member

    Wasabi & Jeanette,

    Thanks for your updates & encouragement! How wonderful that you both are feeling better! It gives me hope.

    Now we just need to hear from lolo500...

    I'm trying not to get my hopes up too high, but I know from your posts that Dr. Powell will do testing that my other Dr's don't know about.

    The thought of being on longterm antibiotics really freaks me out, so I hope that I don't need them! I guess I'll just have to wait & see what the tests reveal...

    Jeanette, you mentioned that Dr. Powell referred you to an OB/GYN for hormonal problems...Doesn't Dr. Powell treat hormonal imbalances? I know for sure that I have low Testosterone & I highly suspect that I have Thyroid issues.(Altho' I've tested "normal" on blood work) I was hoping he'd be able to treat those problems.

    Again, thanks for your updates. I'll let you know what happens at my appointment.

    Hugs,
    Annie
  17. Lolo500

    Lolo500 New Member

    Wrote a message earlier to Wasabi. Please check my posts.

    I have an appointment with Dr. Warner as well next week and will let you know how that goes.

    I'll write more later. Time to go check in with Dick Clark.

    Happy New Year to All.
  18. Jeanette62

    Jeanette62 New Member

    Hi Annie,

    I was a little nervous about long term antibiotics at first, but after reading up about the CPN bacteria I feel it's worth a shot to eventually feel better.

    Dr. Powell will treat thyroid problems, but if there may be other hormone issues he prefers to refer to Dr. Warner. Dr. Warner is semi-retired and only consults for hormone problems 3 days a week. He has shown a personal interest in helping patients with CFS/FMS and has specialized in hormone problems for many years. Women come from all over to see him too because he is one of the best as well. He previously had a practice for 20+ years in Los Gatos.

    At the time I asked if he knew of another hormone specialist in my area, but Dr. Powell didn't so I went with his recomendation. I'm glad I did. It's so hard to find good doctors and I just didn't feel like searching for one on my own at that point in my area.

    btw my thyroid TSH had been low from Mar to Aug and my PCP didn't treat it. In Aug it went back to normal so he decided to watch it. The other rheumy I had at the time just ordered the TSH test so I asked my PCP to do the T3 and T4 tests and he said No. I was pretty frustrated by then. I'm glad I found Dr. Powell from Wasabi's posting at that point because I'm finally being treated for things that would have otherwise been missed.

    Good luck at your appt. on Tues.

    Jeanette
  19. bpmwriter

    bpmwriter New Member


    did you have any symptoms specific to chlamydia pneumonia or were you asymptomatic at the time of testing? sort of emabarrassing, but i contracted chlamydia (yea, the other kind) right before a major relapse during which time i began experiencing shortness of breath and hoarseness; i can't project my voice. recently i read that the two other types of chlamydia can be become c. pneumonia in immuno-compromised individuals and now i'm wondering if i have it. my heart and lungs sound fine. no fever. just this shortness of breath and i feel a little weak (comes and goes).

    i'll likely ask my PCP about testing. does quest lab do the testing, or is testing done through a specialty lab?

    e.
  20. Wasabi

    Wasabi New Member

    How nice to hear updates from other patients of Dr. Powell! Thanks for writing, everyone.

    I'm really glad Dr. Powell was able to refer a couple of you to a good hormone doctor. I haven't been referred to Dr. Warner myself, but I'm glad to know, because I have a friend who might benefit from this.

    lolo500:
    I'll respond to your post in this thread, since it pertains to Dr. Powell. (Hope you'll find it here!) I am indeed taking Nystatin. Thanks for noticing that it's not on my list in my profile. I'll have to add that.

    I too share the problem of not being able to sleep on my side without pain because of my knees, and I often have a blanket between my knees to help.

    I don't have tingling in my low back and legs, but I have in the past experienced it in my feet and hands. My feet are particularly sensitive at night. I can't stand having the weight of the blankets on my feet, so so I have a blanket rolled up and stuffed in at the bottom of the bed, under the sheets, to create an air pocket for my feet.

    bpmwriter:
    Dr. Powell ordered the Chlamydia Pneumoniae tests for me, and I had them done at a Quest lab. He does say that the tests aren't totally reliable, so they are only indicators of exposure. He bases his diagnosis of infection with CP on the test results + medical history + symptoms.

    If I understand correctly, the symptoms of Chlamydia Pneumoniae differ based on whether it is an acute or chronic infection.

    Nearly everyone has had or been exposed to Chlamydia Pneumoniae as an acute infection--it's the bacteria that causes bronchitis, sinusitis, and pneumoniae. At that stage, the symptoms include cough, nasal and chest congestion, etc.--symptoms that we associate with bronchitis.

    When it becomes a chronic infections, the symptoms overlap largely with general FM/CFS symptoms and include joint and muscle pain, brain fog, and fatigue.

    So, to answer your question, I did have symptoms of *chronic* Chlamydia Pneumoniae.

    I've had bronchitis numerous times in my life, so I know I've had it in the acute stage. Based on my history, postive test results, and symptoms, Dr. Powell was pretty sure that I had it. The fact that I'm responding to treatment seems to confirm that.

    Jeanette:
    It's interesting that you are on NAC instead of Amoxicillin. I'm still on Amoxicillin. Was this a recent change for you? Out of curiosity, I'll have to ask about NAC at my next visit, which is next week.

    Well, I hope Annie has a good first visit with Dr. Powell. Thanks again, everyone, for the updates. Happy New Year!!