WASABI/Dr.Powell patients...Our continuing Updates!

Discussion in 'Fibromyalgia Main Forum' started by CAAnnieB, Jan 24, 2006.

  1. CAAnnieB

    CAAnnieB New Member

    Hi Wasabi, Jeanette & Lolo!

    Seeing as you are way ahead of me on Dr. Powell's treatment, I thought I'd ask you re: some side effects I've been having...

    Since starting with all the supplements, Diflucan & injections; I have had periods of each day where I am hit with EXTREME fatigue. It is SO bad that I honestly feel drained of all energy & I need to lie down. I fall asleep immediately & usually wake up within an hour feeling better.

    Yesterday was the worst I've experienced! It hit me in the morning around 11 A.M. (before yesterday; it usually came after lunch)...I then felt SUPER tired again in the evening. Unfortunately, this came upon me when I was driving & it scared the bajeebies (?!) out of me! I thought I was going to fall asleep at the wheel! A VERY scarey feeling...

    I also had an episode of feeling very faint yesterday...It passed quickly, but it was weird.

    Did you get any of this from the treatments? I asked Michael about the extreme fatigue at my last appt. & he said it could be from the C.P. Endotoxins. Just wondering if you experienced this, how long it lasted & if you found anything to help with the fatigue?

    Another question I have for you is concerning the Oxytocin injections. Are you still doing them? The first one I got was at the Dr's office. I experienced a flush (actually I felt faint & hot) after I left the office & I was at Knott's Pharmacy! (Went to pick up Nasal Spray & Oxytocin injections) I DID have a lessening of pain after the "flush" went away.

    Since I've tried the Oxytocin injections at home; I've had varying success. The first time, I thought it brought on a headache...which turned into a Migraine. I also did not feel improvement in my pain. The next time; I felt fine afterwards & DID feel like it helped a little with pain. Both times at home; I didn't feel the "flush" afterwards.

    How have/ do you react to the injections? Do you have varying responses? Does it work better the longer you have used them/ the farther into treatment you are?

    Thanks so much in advance for your input! I have an appt next Monday with Michael, & of course I'll run all this by him. BTW, my 2nd appt...was with Michael, went VERY well. He took a LONG time with me & explained LOTS. I really liked him! I think I probably would like Dr.P too, but our first time together was pretty rushed...Plus, at the 2nd visit there was way more to discuss because we had my lab results back.

    Thanks! Hope you are feeling well!

    [This Message was Edited on 01/24/2006]
    [This Message was Edited on 01/24/2006]
    [This Message was Edited on 02/12/2006]
  2. CAAnnieB

    CAAnnieB New Member

    Bumpity Bump!

  3. Wasabi

    Wasabi New Member

    Bumping for myself. I don't have time to reply just now, but I promise to respond later tonight or tomorrow. Take care!
  4. CAAnnieB

    CAAnnieB New Member

    Thanks! Today was a better day for me...I didn't "hit the wall" til the evening. I'm wondering if my Vit B12 & Oxytocin injections days are the worst for the fatigue?....I'll have to look back on my calendar to see if there's any correlation.

    Looking forward to hearing from you!

  5. Jeanette62

    Jeanette62 New Member

    Yes I too had extreme fatigue although at the time I didn't realize it was from the NAC. I was really slow at starting the supplements and new meds and started them one at a time at the lowest dose. I was only taking 1 NAC at the 2nd visit so Dr. P told me to increase it to 2 and then the fatigue and pain increased even more for awhile. It's gotten better now, but still hits me every 2 or 3 days. I still feel the need to lie down but don't always fall asleep. Last night was a bad pain night so today I fell asleep.

    I exercise 4 - 5 days a week and that contributes to the fatigue as well. It's still really frustrating to me that I have to continually push myself to do these things and it's always so exhausting.

    I haven't been doing the oxytocin injectins regularily. I had my appt. yesterday, so Michael asked me about it. I told him my foggy brain was having trouble figuring out the instructions on how to do it plus I was worried about it giving me migraines since I had a bad migraine after the first one, but there had also been other contributing factors as well. He had Annie show me again so I think I can do it myself now. I haven't gotten a strong flushed feeling with the shots and so far only a little decrease in pain.

    I had my appt. Mon. with Michael and the milk thistle did lower my liver enzymes so I was able to start the INH today. I'm so glad that worked out and didn't delay the treatment further. I had a lot of questions too for Michael and he spent a lot of time answering all of them.

    Michael cautioned me about exercising too much and thought I should consider slowing it down. He reminded me to be careful about overdoing it because this is an illness and I need to take good care of myself especially now with starting the abx. That is a hard one for me since I'm not working right now I'm trying to at least exercise and work on losing weight even though it's really hard, exhausting, and increases my pain. This is the longest I've ever stuck to it in my life before and I don't want to give up the progress I've made even though it's a struggle to maintain. It's the stubborn streak and type A coming out can you tell? I'll have to see how the INH makes me feel and take it one day at a time. I did have to take a week off after starting the 2nd dose of NAC because I ended up with a lot of kidney and pelvic pain.

    I had my appt with the neurologist today for the migraines. Doctors always want to know what meds you are on so I brought my list in all typed up so I wouldn't have to write it out. Of course he wanted to know why I was taking some of them, so I told him about the cpn trmt and showed him the article by Dr. Stratton. He had actually heard of Dr. Stratton's work, but didn't know anyone was using it to treat FMS. He was actually interested in it and his response was positive.

    I hope you get a beautiful day next Monday like I had so you can have a beautiful drive.


  6. Wasabi

    Wasabi New Member

    Hi everyone! Hope you're doing well!

    Annie, I'm wondering if you're doing the B-12 and Oxytocin injections on the same day. Have you tried doing them on different days to see how you react to each of them?

    I'm curious, because I couldn't tolerate the B-12. I tried it for about three days, and I was getting progressively fatigued and weak. I could barely walk from my car into the store. For whatever reason, my body didn't like the B-12, so Dr. Powell took me off it. It's unusual for a person to react to B-12 this way, but it does happen sometimes. You might see if there's any correlation between B-12 and your fatigue.

    It could also just be die-off. Are you keeping up with the charcoal? That seems to help quite a bit, if it's die-off.

    I experienced a steady improvement for about three months, before I hit a plateau. Then I began improving again. During all of this, I didn't have very many flares or unpleasant die-off reactions.

    One thing to remember is that you are introducing a lot of new medications and supplements into your body, and it may take some time to adjust. Listening to your body is always good--I'm so glad I called Dr. Powell about the B-12, because if I hadn't paid attention to that, I might have been forcing my body to absorb something that didn't agree with it. So, definitely, do talk to Dr. Powell or Michael if you're having any unusual reactions. They have always called me back on the same day, which I think is amazing in the current medical profession.

    Everyone has a different "pattern" to their recovery. I was really coasting along and doing so well, and I finally hit a snag in the last month. The last two courses of Flagyl were really tough. I felt awful! I actually thought I was having an allergic reaction to the Flagyl, but Michael thinks it may just be die-off.

    He reminded me that we're fighting a disease. In my case (and I think many of us), we're fighting Chlamydia Pneumoniae, which is a particularly dreadful germ. I was reminded of this when I looked at this web site:

    It really brings home the seriousness of this infection and why it takes such long-term and aggressive treatment to eliminate it. Someone on this site posted a thread on a memorial site for CFS patients. I looked at it and was shocked to read that some of these patients had died from complications resulting from untreated Chlamydia Pneumoniae infection!

    Anyway, do give us an update if you figure out what has been causing your fatigue. I'm always curious to hear about how others are doing.

    As for updates in my treatment, I was switched from Amoxicillin to NAC. I haven't really felt any changes. Also, my T3 levels were re-checked (for the second time), and they were actually too high this time, so Michael reduced my T3 dose. I think that this may have also contributed to my fatigue, as my heart was kind of feeling overtaxed.

    By the way, Did Knott's Pharmacy tell you to refrigerate your Oxytocin? They didn't tell me the first two times, and so I was storing it at room temperature. The third time, they said it needed to be refrigerated! I always wonder if all the shots I did in the beginning were less effective because of that. It's hard to tell.

    Oxytocin has a really subtle effect for me. And the effects seem to vary. Occasionally, it makes me really loopy and relaxed, and I feel really great. Other times, I can hardly feel the difference.

    The greatest impact, I think, is that it helped re-adjust my internal thermometer. I was *freezing* all the time. Even when it was 100 degree outside, I was cold. I couldn't wear shorts or tanktops, because I'd feel chilled. It was insane.
    Raising my body temperature to a more normal temp seems to have helped with the pain, interestingly enough. When I'm cold, I ache all over.

    After a while, the Oxytocin shots started hurting a lot, so Michael said I could increase the amount of the painkiller that you add to the Oxytocin (can't remember what it's called). I think I may occasionally get headaches from the Oxytocin too. I made a note to myself just recently that I should try and determine if the Oxytocin really is causing headaches.

    Finally, have any of you discovered the benefits of gentle massage? It has been wonderful for me. I found a great massage therapist in Roseville. I know many of you don't live in the Sacramento area, but if you're interested, I can recommend mine.

    Well, I've written a rambling post, but hopefully it will be helpful. Have a great day, everyone!
  7. CAAnnieB

    CAAnnieB New Member

    Thanks SO much for replying! It is comforting to me to know that I am not alone in experiencing these symptoms...I wish we didn't have to go through this to get to the healing stage! Maybe Wasabi can encourage us as she is farther along in her treatment! (And is feeling great benefits & improvements!)

    I'm assuming the NAC must be quite effective in beginning the war on the Cpn....I didn't start out the supplements slowly. I can understand why you wanted to. I have been very freaked out with taking SO many supplements & Rx's & injections! I typed out a list for my PCP & I couldn't believe how long it is! But I wanted him to be aware of what I'm doing with Dr.Powell.Anyway, I jumped right in to the recommended treatments...taking the NAC, Diflucan, injections & many supplements. One worry I had was that if I had a weird reaction to something; it would be very difficult to tell what was causing it! But I bet it's the NAC which is causing the fatigue. Of course, the Vit B12, Ginseng, Garlic, Horny Goat Weed, Ashwagandha, L-Arginine,& Niacinamide also aid in fighting the Cpn. So between the NAC & supplements; I guess the war has begun & we are feeling the effects!

    I'm glad that you are able to start the INH. Let me know how that goes for you, O.K.? That will be the next step for me also. Michael wanted me to get started on the T3 treatment first before adding the antibiotics. I ordered the T3 last week, but am still waiting for it to be shipped from Virginia. I hope it comes today!

    I'm sorry you are battling with Migraines. I get them too, altho' not very often. I usually have about 2 a month & my Imitrex wipes them out quickly. Have you noticed an increase in your Migraines since starting with Dr.Powell? I got a whopper almost-Migraine headache from trying a half of a Nitro pill! I'm not sure if the Oxytocin is a trigger too...could be or it might not have been! Time will tell. We definetely do NOT want to take something which increases our headaches!

    That's interesting about your Neurologist. I'm glad he had heard of Dr. Stratton's work with Cpn & that he had a positive response to your FM treatment.

    How frustrating for you to not be able to do the amount of exercising that you want to do. I walk with my dog every day & go to the "Y" twice a week for warm water exercise. It does feel SO good to exercise & to be doing something so positive for your physical and mental health. I guess we just need to listen to our bodies & take it a little slower during times of flare.

    Thanks for the good wishes for a nice travel day on Monday! I DO hope it's nice. It takes me a minimum of 2 hours to get over to Sacramento. Last time; my hubby drove, but this time I'm on my own.

    Gotta go...I'm having one of those nasty "fatigue attacks"! Ugh! This must be what CFIDS feels like...

    I DO so appreciate your reply! Take good care of yourself!

    [This Message was Edited on 01/25/2006]
  8. CAAnnieB

    CAAnnieB New Member

    How funny! We must have been typing at the same time!

    Thanks for your input! I am having a major "fatigue attack" right now & can barely keep my eyes open. Off to bed I go!

    I'll write more later, but I wanted to thank you for your reply.

  9. Jeanette62

    Jeanette62 New Member

    Thanks for all the info it really helps to have someone who's a few steps ahead and been there and done this already.

    It should have been a clue to me when the oxytocin was shipped in a cold pac, but it had leaked and made a mess in the box. I didn't open it right away because the directions were confusing to me and after one demonstration I just wasn't sure about it. Plus the pain relief didn't seem to last so I wasn't to eager to start it.

    Interesting how you suffered with the "freezing" problem. I was "freezing" too all summer even on those 100 degree days I'd be under a down comforter cause I felt so chilled when I put on the a/c for my hubby. I'd be upstairs where it's always roasting and the house hadn't even had time to cool off yet, but just starting the air would freeze me so much it would make me shiver. I understand what you mean too about feeling cold making the pain worse. I especially feel the cold pain now when I drive my son to school on these cold mornings. It just makes my body hurt. I'm glad to hear there is hope for the cold hands and feet and the oxytocin will eventually rewarm the body so it doesn't feel so cold all the time. I'm so tired of being cold too.

    When I told my 21 yr old daughter about the oxytocin, she tells me Mom you know that's a chemical produced naturally in the brain to increase intimacy. Why would you need to be taking it for pain? Your taking too much medicine! BTW she's studying psychology in college and knows it all.

    I wanted to add more but I'm getting to sleepy. I have a few more questions I'll aske tommorrow for you and Annie.

  10. CAAnnieB

    CAAnnieB New Member

    Well, I just never know when I'm gonna get hit by one of those "fatigue attacks"! I literally find it difficult to keep my eyes open & focused. Very weird.

    I looked back at my calendar that I keep with all my symptoms & when I do what treatments...I don't see a correlation between the injections & the fatigue. I've only done the B12 & Oxytocin on the same day once. I think that I will adjust my schedule tho' so that they are done on different days. That way, if there is any reaction; I'll be able to identify it better.

    The fatigue actually started right after my 1st appt. with Dr. Powell...And I had only received a B12 & Mag. injection at that appt. But I started the supplements, including the NAC, right away that day. I'm suspecting that the fatigue is from the NAC & other supplements which are killing off the Cpn?

    They didn't suggest any charcoal supplement to me at my first 2 visits. Maybe they will tell me about it on Monday. How often do you take it? Every day?

    I just took my first T3 this A.M.! I am going the "slow" route, because I tend to react weirdly to meds. I'm hoping that the T3 will give me energy to counteract this new fatigue problem!

    I'm sorry that you've had a "snag" with the Flagyl, Wasabi. What are your symptoms? It must be frustrating to feel well & then have a set back. I hope you feel better VERY soon.

    Knott's did NOT tell me to refrigerate the Oxytocin! Shame on them! You would think it would be on the Rx label. Well, my little vials are in the frig now! Glad you mentioned that!

    How encouraging to hear there is hope for my freezing bod!!! How weird that all 3 of us have this problem! This past year was the worst time I've had with temperature regulation. While my friends are having Menapause hot flashes; I am having freezing cold flashes! I can be sitting on my heating pad, all bundled up, yet still feel frozen to the core! It's a terrible feeling. I thought it had something to do with my Thyroid, but Michael told me it's from the Cpn...I didn't get a full explanation. But it's good to hear that you improved with treatment, Wasabi!

    Ahhhh....A massage would be heavenly! Too bad I can not afford one! I'm wondering how I'll be able to continue to afford all the supplements & injections. Somehow I'll find a way. I'm really hoping this treatment protocol will work.

    Thank you to both of you for keeping in touch! It is wonderful to be able to "compare notes" and support each other. I noticed last time I was at the Dr's office that they have support group meetings there for Dr.P's patients. A great idea for those who live nearby! Thank you for being my cyber support group!

  11. CAAnnieB

    CAAnnieB New Member

  12. Jeanette62

    Jeanette62 New Member

    Hi Annie and Wasabi,

    Today I was exhausted from the time I got up. I remembered to increase my Topamax by 25mg this morning and the fatigue it caused was awful. After dropping my son off at school, I still went to the gym. The elliptical was exhausting every step of the way and I could barely keep my speed up to where I normally keep it which isn't very fast. A friend walked up to say hi when I had only been on it for 11 minutes and commented on how tired I looked so it must have really showed on my face. Most of the time I am able to hide how difficult the exercise really is for me. I was glad when I finally made it to 30 min and didn't even try for the extra 5 min today. Then I had to sit and rest for a few minutes on one of the nautilus machines because I was so dizzy (dizziness is a normal sx after cardio for me only it was worse today). Then I headed home for a quick shower before I went to my water exercise class. It felt so good. I was so sleepy after so it was hard driving the 40 minutes back to pick up my son from school. I was early and snoozed in the truck for about ten minutes. At home I got a few things done and then I had to lay down for the rest of the afternoon and of course I fell asleep.

    The only sx I've had so far since starting the INH was some BAD diarreah yesterday. It was only one time and it hasn't come back. I could tell something bad was being released out of my body.

    Tell me more about the support group at Dr. P's. I must have missed that.

    How have your GP doc's responded to your info about Dr. P's treatment plan? What about family members? For me my husband seems ok and knows I'm going to do what I feel I have to so I can get better. He's not really interested in the details. My mom on the other hand does not agree at all. She has FMS although never officially dx, has not had very good experiences with doctors because they always treated her like a hypocrondriac because there didn't use to be a name for it. She thinks I'm poisoning my body taking the abx. She recently had sucess and great reduction in pain/fatigue with Frequency Specific Microcurrent (FSM) treatments. Have either of you heard of this? She offered to pay for a treatment for me so I will stop this craziness. I haven't fully decided if I am going to do it or not just to get her to quit harping at me. I really don't think that kills the CPN bacteria and since that is the underlying problem I don't know if I want her to waste her hard earned money because I am still going to continue this protocol.

    Annie I understand about friends having hot flashed while we're having the "freezing" attacks. I went to a meeting at someones house last fall. Since I still have a problem with motion sensitivity I asked if they minded if I turned the fan off when someone else was having an allergy problem from it. For me it was making me nauseous and dizzy. My friends of course then got too hot, but I was perfectly comfortable with it being warmer and the other woman stopped sneezing and coughing.

    The charcoal adds to the fun, especially the timing of it. It has to be taken 2 hours after any meds or food and then you have to wait another 2 hours before having any foods or meds again. The reason is because any meds will bind to the charcoal and be eliminated from your system so by waiting 2 hours it allows it enough time to get into your muscle tissue and out of your digestive system. The charcoal allows the bad endotoxins to bind and release from your body so it doesn't go other places in your body and cause further problems. You have to take 10 of them all at once which can be hard at times.

    btw the T3 has helped a little with the fatigue. For me the fatigue still comes in waves. I think it's a combination of everything that helps and I do notice the B12 makes a difference too.

    I think initially I had improvement with the migraines when starting the protocol. The migraine problem I have causes vertigo and dizziness and is referred to as Migraines Associated Vertigo. A major sx is extreme dizziness after/during cardio exercise so it decreased for a short time. I have also been getting moderate migraines that last for weeks at a time and it is generally triggered by hormones from my menstrual cycle, barometer pressure changes and food sensitivities. It leaves me with 24/7 disequilibrium and motion sensitivity as well although the motion sensitivity is better controlled since starting the Topamax. It was so bad before I was dx and started med that I would get motion sickness with severe nausea from driving or watching TV. I was nauseas 4 - 8 hours a day for 7 months before I found a doctor that knew what it was.

    Sorry this was so long. It's great to have this group. We'll have to get together sometime.

  13. Wasabi

    Wasabi New Member

    I really enjoy reading your posts. I'm puzzled at the fatigue you are both experiencing at the beginning of the treatment and have been mulling over that. I can only speculate, but here are some possibilities I could think of:

    Endotoxins are being released since you started the treatment, and you are feeling the effects of those toxins passing through your system.

    The stress of traveling to the office, managing all the pills, and learning about Cpn and treatment cumulatively has added stress into your life. And as you may remember from the video at Dr. P's office, stress of any kind impacts the body in a physiological manner.

    You are allergic or sensitive to one of the substances you are taking. Or you have food allergies that you are unaware of. (I mention food allergies, because I didn't know I was allergic to wheat until I was tested. When I cut it out of my diet, it made a huge difference.)

    Things that could possibly help (more speculation)

    Has Michael or Dr. Powell discussed with you the importance of rest and taking it easy at this stage of the treatment? I know this sounds strange, but at one point Michael told me that I should worry less about keeping fit and worry more about letting my body rest.

    Essentially, the body has grown fragile due to the illness, and it doesn't have the normal reserves to cope with extra stress or physical strain. The treatment itself puts some strain on the body, as you are pushing it to "detox" from the Cpn infection. You are also injesting significantly more supplements and medications.

    Michael told me that in the beginning, it's important to allow your body to process all this and to not push yourself physically. If a person had the flu or a bad cold, we wouldn't encourage him/her to push his/her physical limits. Rest is a higher priority. Similarly, until the body is stronger, it's important to give it some room to rest, if that makes sense. Later on, as your body begins to heal, that's when it's okay to focus more on fitness. It's not that we shouldn't exercise, but that our priority should be on allowing our body the resources it needs to heal by not pushing our physical limits.

    I'm wondering if you are drinking enough water. Because you are essentially detoxing, it's important to have enough water passing through your system so that it can effectively cleanse itself of all the impurities. It's kind of like a washing machine--there has to be enough water in the machine for it be able to do its job. :-D

    It's interesting, Annie, that they didn't add charcoal to your regimen yet. Maybe you can ask about it at your next visit. I know it seems to help me a lot. (Did you know that vets sometimes use charcoal when animals have injested poison? It's essentially for the same purpose--to bind the toxins while they pass through the system. Interesting, no?)

    Speaking of charcoal, I thought I'd mention that I take my in powder form mixed into water. I dislike swallowing pills, so even though it tastes like mud water, I prefer it. Just another option if you don't want to take the pills.

    Anyway, those are all the things I can think of right now. I'm sure Michael or Dr. Powell will be able to provide "real" answers!

    Finally, to answer a couple of questions:

    My symptoms with the Flagyl were severe nausea (to the point that I was afraid I was going to vomit), abdominal pain, weakness, dizziness, headache, and just the feeling like I was poisoned. It was awful. Then I got two itchy quarter-sized welts on my arm. It kind of freaked me out, as I've had allergic reactions to a couple of other antibiotics before (not ones used in the protocol).

    The last two cycles of Flagyl were pretty bad. I finally skipped the last day of the most recent cycle, because I was afraid I was developing an allergy to it. Anyway, Michael said he was glad I stopped early, but he wants me to try it again after two weeks. He thinks it may be a severe die-off reaction, as opposed to an allergic reaction. We shall see! Flagyl is apparently the best antibiotic to kill Cpn in its third and cryptic phase, so he would really like to see if I can tolerate it.

    Speaking of Cpn, Jeanette, that's an interesting thing about your mother thinking that you're poisoning your body. My mother had similar reservations. I suppose it's a matter of whether or not a person believes in the infectious connection or not.

    If you indeed have a chronic Cpn infection, I don't think there is currently any other way to treat it besides with long-term antibiotics. And it's an incredibly harmful infection. Have you had a chance to look at cpnhelp.org? It has good information about this infection and how it can even get into your brain cells, immune system cells, blood cells, etc. Dr. Stratton (whose protocol Dr. P follows) and Dr. Powell himself sometimes post on this site. It's pretty interesting.

    My personal belief is that there are a variety of causes for Fibromyalgia. Some people may not have chronic infections, and for those people, this treatment probably wouldn't do much good. I just know that for me, it's the best hope a doctor has given me.

    Have I mentioned that Dr. Powell was the 13th medical practitioner I saw in three years regarding my health problems? I went to 3 general practitioners, 3 allergists, a physical therapist (for four months), an orthopedic surgeon (and had knee surgery), an urgent care physician (when my knee pain was insufferable), a chiropractor, a podiatrist for feet problems, and my dentist because my TMJ was so bad I could hardly eat.

    I had dozens of vials of blood drawn and no conclusive results. Even the knee surgery turned up without any conclusive injury discovered. Everyone threw up their hands and declared me fine. The allergists agreed that I had an inordinate number of allergies, but no one would consider that there was something larger going on.

    I had one doctor angrily wave my test results in my face and say, "Look! There's absolutely nothing wrong with you!" By the time I saw Dr. Powell, I had pretty much given up on doctors. I was so exhausted, cold, and hurting all over that I once said to my husband that I didn't think I would live past 50 at this rate. (I'm in my thirties.) I was literally spending most of my life in bed, unable to function. (And I'm a highly active, productive, over-achiever type of person. It's not like I'm lazy.)

    By the time I went to Dr. Powell, I had done enough reading that I was convinced that I had FM. I can't tell you what a relief it was to receive a diagnosis.

    Anyway, to answer the question about PCPs.... Before I went to Dr. Powell, my PCP told me I had CFS and suggested a book on yeast (which *was* helpful), but he literally ignored me--did not respond to my comment and changed the topic--when I said that I didn't think it was CFS but FM. He was going to send me to a rheumatologist, but I sent myself to Dr. Powell instead. Thank goodness!

    In my desperation, I had signed up with this PCP who has a new program in which you pay a fee for the year and have 24/7 access to him by cell phone, physical exam and several free appointments, etc. It's a new kind of medical practice that I think will become more popular in coming years.

    Anyway, it's a nice concept, but the reality is that my PCP is an arrogant man with a god-complex. I've talked to him several time on the phone since my FM diagnosis (and resisted the urge to say, "I told you so!"), and even though he has received Dr. Powell's notes on my diagnosis, he won't acknowledge my illness. He asks how my chronic fatigue is doing. Needless to say, I'm dropping him once the year is over.

    So, in summary, I don't have a decent PCP. I hopped from the one who waved the test results in my face to one to whom I had to suggest a referral to a rheumatologist or allergist to this one who doesn't believe in FM.

    What is it with general practitioners? Anyone have better luck? I do have a wonderful GYN who believes in FM, listened to my description of Dr. Powell's protocol, asked questions about things she didn't have knowledge about, and even asked to copy Dr. Powell's business card so that she could recommend him to other FM patients.

    So, good doctors exist, but perhaps most of the good ones are specialists. I don't know. I just haven't had any luck whatsoever with PCPs. I don't understand why patients have to work so hard to get decent care. It should be the other way around with doctors competing for our business.

    Anyway, I'm really sorry about the looooong message, and also for ranting about doctors.... On a positive note, my husband has been very supportive. He has even come to my doctor's appointments and helps me sort my pills each week. :) I'm very lucky in that sense.

    My mother-in-law reminds me that FM is still in the early stages of acceptance. Once upon a time, rheumatoid arthritis and lupus weren't considered legitimate illnesses. Fortunately, things have changed. I think they will for FM also. It will just take some time. In the mean time, let's not lose heart!

    Again, sorry for the long post. I hope you have a great day!
  14. Jeanette62

    Jeanette62 New Member

    I've had problems with extreme fatigue since the FMS got really bad. Let me tell you a little bit about how it started.

    I've been in the early childhood field for the last 20 years and had been a site director for 3 years and decided I wanted a change with less responsibility/stress/hours so I decided to go back to teaching. I was in the process of changing jobs and took a temp job for 2 weeks working with infants at a program I had always wanted to check out because it had an excellent reputation in the community. I had been working PT at the job I was going to start FT as well during the transition. On the last day Fri. as I was leaving I was carrying all the toys and learning materials I'd brought in to share with the infants, which blocked my vision so I forgot there was a step as I went out the door. The result was one broken ankle, a sprained ankle, two injured knees and what I thought was a mild bump on the head and bladder problems. This was in Oct. of 04.

    In Jan. 05, my new employer was either going to have to hire someone else for their 3 yr old class or I would have to come back to work. I really wanted to work at this school because it was such a high quality program as far as the staff interactions with the children. My doctor and PT both wanted me to wait at least another 3 weeks, but hey I've overcome obstacles before (never an injury)and thought I could do it. Initially the doctor wrote the return to work order with a few restrictions but the employer said they wouldn't hire me with those restrictions so I got the doctor to take them out. That first day especially was excruiatingly painful as I had to get up and down off the floor at least 20X and it was VERY VERY painful.

    It took about 6wks for the pain to be tolerable, but as the pain subsided the dizziness became so chronic I couldn't turn my head without it spinning and feeling nauseous. If I pushed kids on the swings I'd get extremely dizzy and nauseous. I was getting car sick driving to work (45min to 75min commute). Even when I first started working it took me a long time to learn the order of the daily routine and the transition and curriculum songs and I had to keep checking the written papers. I couldn't seem to multi-task and keep track of everything going on in the classroom which was something that use to be like a sixth sense when working with kids. I felt like I was functioning like a brand new teacher not someone with years of experience that use to train new teachers. I felt like I was functioning like a brand new teacher not someone with years of experience that use to train new teachers. I was feeling quite devastated to not be able to function normally and not know what was wrong with me.

    I finally made an appt with my GP which took 3 wks because of my PT schedule I only had late Mon. avl. He took me off work for 2 wks and when he extended it my new employer let me go. I wasn't able to get workers comp because they said the dizziness wasn't related to the initial injury and I couldn't get state disability because my prior employer was a church and a 501C3 and they didn't have us pay into state disability and I didn't realize it wasn't being taken out of my check. I still do not have the high energy level required to work with groups of young children and the dizziness can still be a problem.

    I guess I lost my point. Sorry. During the time of my injury it was very difficult for me to get around. I had to crawl up the stairs and use a chair for support to drop onto a couple of large pillows and crawl to the stairs to scoot down. I spent a lot of time upstairs the first month. With all the extra weight I was lugging around I decided then it was coming off. I'm sure I put on another 10 pounds during that time as well.

    I started PT in Dec.04 and began changing my eating habits and riding the stationary bike. 10 minutes was hard plus made me dizzy but in about a month I worked up to 30 min. It was hard to keep up when I went back to work those few months, but I did because I was determined. This entire time the dizziness with exercise has never gone away, but some days are not as severe as others and it's not as severe as it was last year when it was like getting off a fast spinning ride. Now the spinning is slower.

    At the time I didn't tell my PT the extent of the problems I was having with the stationary bike because I thought it was just because I was out of shape. Turns out it had nothing to do with that. Exercise causing migraine sx is a common problem - for me it's just dizziness not always head pain - although - I've had it be head pain too especially around my menstrual cycle.

    It has been a real struggle to lose weight with the dizziness and the FMS, but I've stuck to it and made it a priority. It's first on my list of things to do every day and I'm putting me first. I've lost 65 pounds now and still have 65 more to go. I'm afraid if I stop and lose the habits I've started it will be hard to get started again. All my life I've failed miserably at it and now my mind has finally gotten set and I'm doing it. I've even had many months where I haven't lost any weight when my thyroid was interfering and the Amitriptyline was messing with my body, but I didn't give up I kept exercising and that's probably the only reason I didn't gain like many others do with those things going on. Since last March my weight loss has been very slow even with the increased exercise.

    I guess I should have talked further with Michael about it and come clean with my current exercise schedule. I'm sure this plays a big part in my exhaustion. 4 - 5 days now I'm doing the elliptical for 30 minutes sometimes 35 when I feel up to it. Most days this is really hard for me and I have to tell myself I can keep going and count off the 5 min increments. On mondays I've started a pilates class to start toning and strenghtening my core area this week they changed it and it's now called something different. Mon. and Wed. I do a Chi-ball aerobics which is low impact with some dance as well...it's a lot of fun...Wed. is a little slower as it's a beg./Sr level. Wed. and Fri. are Yoga classes and both are gentle stretching and Fri. is beg/Sr. On T/TH I go to a water exercise class. Most days I do many of the stretching and strengthening exercises from the PT that I worked with if needed. Sometimes after the elliptical I'll do 2 or 3 nautilus machines while I wait for the dizziness to subside. I usually take a relaxing bath a few afternoons and rest most days for at least an hour or longer.

    I understand what you mean when you say this is an illness and we need to treat it like one and we wouldn't expect someone with the flu to exercise, but it's scary for me to postpone my weightloss goals. I'm afraid I'll lose the progress I've made or I may not start back up and fail. Yet at the same time I so desperately want my energy back too and don't like the crash feeling and being so depleted. That's why I always exercise first so I have the rest of the day if I need to rest.

    I guess at my next visit I'll have to let Michael know what my exercise schedule is really like and ask him his opinion. In the meantime if the abx causes any increase in sx, I will have to slow it down. Darn just when I'm finally starting to lose some weight.

    btw all I drink is lots of water all day and my 1 cup of coffee in the morning.

    Sorry I went on so long.

    I'll comment more on what you wrote later.


  15. Wasabi

    Wasabi New Member

    Thanks for your post. I don't have time right now to respond in detail, but I just wanted to tell you that I'm amazed at what you've been able to accomplish despite the illness. And, wow, I'm really impressed at your perseverance in keeping fit and losing weight. You can certainly be proud of yourself!

    I hope I didn't sound like I was trying to tell you that you ought to do things in a certain way. It's just speculation and suggestions based on my own experience, so please do just take it as simply that.

    I can certainly understand why keeping up with your exercise program is a top priority for you, especially after you've put so much effort into it and have had such great results. So, by all means, you should do whatever you feel is right for you. Consulting with Michael is probably a good idea, but in the end, what you do really is your own decision to make. It's your body, after all. And Dr. Powell and Michael seem to respect that too. They've never pushed me to do something I wasn't ready to do.

    Anyway, just wanted to say thanks for posting that message and for sharing your experience. What you've overcome so far is incredible. I hope you keep making progress toward healing! Take care.
  16. Jeanette62

    Jeanette62 New Member

    >>I hope I didn't sound like I was trying to tell you that >>you ought to do things in a certain way. It's just >>speculation and suggestions based on my own experience, >>so please do just take it as simply that.

    I didn't take it that way at all. I found it very helpful. I had already been thinking about it and wondering about my exercise schedule after my appt. with Michael on Mon. To be honest I was a little worried that I didn't discuss it more with Michael. I don't want my stubborness and Type A tendencies to screw up my health any further. I hope the exercise won't delay the process or hurt me in any way because if it will it is something I'm going to have to definitely change. If it just means I'm going to have to battle more fatigue - then I'll just have to deal with it awhile longer.

    I'm not working and still don't think it's a good time to start a new job yet. I still have a hard time with the brain fog although it is better since starting the supplements, but I'm still way too spacey - not normal for me. The other major reason is if the exercise still bothers my ankles and knees and keeps me awake at night, I really don't think they are ready for me to be on my feet all day or up and down off of the floor for an 8 hr day yet either. I really miss working and being with kids, but I already learned my lesson the hard way about returning to work too soon. Not only did I lose a great job at one of the best schools, but my health went from bad to worse in the process and I was left with FMS and it wasn't worth it.

    I'm sorry to hear you struggled with such a bad herx from the flagyl this late in the treatment. I do visit the CPNhelp.org web site frequently. It seems to be a frequent thing there for that to happen as well too. Hopefully your next round of flagyl goes better. I had a little more diarrhea today and a gassy stomach, but I hadn't changed my diet all week so the INH or Probiotics must be doing something.

  17. CAAnnieB

    CAAnnieB New Member

    Hi Jeanette & Wasabi!

    Hope you are both doing well this weekend. It has started to rain (AGAIN! Ugh!) here...Sure hope it lets up soon! I know this is our rainy season, but I'm REALLY looking forward to warmer,dry weather! My cold bones need some CA SUN!

    Jeanette, I wanted to answer a few of your questions...I read about the Dr.P support group on a flyer in his waiting room. It is led by a patient, I believe...I didn't look at all the details because obviously it's not convenient for me to participate, seeing as I'm 2 + hours away! If I lived nearby, I might go.

    You asked about support from PCP's & family. Well, I am very blessed to have a wonderful Family Physician! When I initially saw him many years ago, I told him upfront about my Fibro. He said he was no expert, but he'd support me in treatments. He is very open to me bringing him articles & suggesting what I want to try. I'm sure that I have been frustrating for him (no easy cure or treatment), but he has been with me through the worst days of this DD.

    In 2003, I was at my worst point (I hope!) with this Fibro. I was trying to work parttime at a job I LOVED...I was Activities Coordinator for the Skilled Nursing patients of a Transitional Care Unit at our local hospital. It really was the perfect job for me. I could pace myself...Sitting & walking when I chose. There was no heavy physical part of my job. I could sit & chart on patients & vary my activities depending upon how I was feeling physically. Besides that, I loved working with the patients, family, hospital staff & volunteers.

    My pain, especially upper body/neck/arms/wrists became SO severe that I finally had to take a leave of absence.I also was struggling with severe stomach pain/ Chronic Gastritis. I was out for 9 months trying to get better! When I returned; I was only able to make it through 4 months of working before I went out again on another medical leave of absence.Eventually, I was let go because I could not return to my job.

    During my first leave; I was referred by my Family Dr. to Stanford's Pain Clinic. I had been taking Narcotics for pain management (first prescribed by a local Pain Dr. & then by my PCP)

    Stanford was an awful experience! I could write a book about it! I won't go into it all here, but basically the Stanford Dr's decided to hospitalize me for 10 days...I was taken off my Narcotics & low-dose Valium (They do not believe in Narcotics or Benzodiazipines for treating FM pain) and this was done way too fast! (In 9 days!) I went home & immediately crashed with a withdrawal from hell. I thought I was going to die. My Family Dr. was SO ticked off at them for doing this to me!!! It was horrific.

    Stanford uses an antiseizure med called Keppra to treat FM pain. While I was in the hospital & they were taking me off my other meds; they were giving me the maximum doses of Keppra. It seemed to help for my hospital stay & beyond, but it ended up irritating my already irritated stomach. ( My stomach has been a mess for about 5 years...I'm on Prevacid) Every time I tried to get back on the Keppra; my stomach would not tolerate it...

    So,oooo...While my overall experience with Stanford was awful (for many reasons...too much to share right now!) it DID get me started in a new direction...I headed to a Holistic Dr. for treatment. She was great...got me started on herbs & supplements. Some of it has been helpful; but not helpful enough to really allow me to function well at home or even consider returning to a job.

    I've been on SSDI disability since the end of 2003. I have worked hard at pacing myself, learning how to de-stress, & trying to come to an acceptance of living with this DD. I have not given up on pursuing treatments tho! I worked with a wonderful Neurologist in Davis...Dr. Eric Hassid, for over a year. He tried various things with me & I probably would have continued seeing him occasionally for maintenance....Then I heard about Dr.P here & I am hopeful that his protocol will bring further healing.

    I took info to my Family Dr.the other day... about Dr. Powell(off his website) & typed up a list of all the meds, supplements & herbs I'm currently taking for him. I was there for something else so we didn't really get to discuss it much in detail, but I wanted him to be aware of this new treatment direction.

    My family...Well, I believe my hubby suffers from Fibro (or Cpn) himself. He has all the same symptoms as I do more or less. He is very resistant to going to the Dr. for ANYTHING, so he is not pursuing being diagnosed or treated. He knows in his heart that he's got Fibro, but isn't one to do much about it! So anyway...We moan & groan together! Quite a pair!

    My kids (13 & 19) have never known me without Fibro! I've had this for at least 13 years...So to them; I have always been in pain & pursuing treatments. (I've tried a lot of different things over the years!) I can't really say they are supportive...they are in the self-centered teen years...plus it's all they've ever known. It saddens me that they never knew me before this DD affected my life so greatly.

    Your Migraines Associated Vertigo sounds terrible! I've been having morning dizziness, but mine is from my TMJ (I believe) as it goes away after the mornings. I get Migraines, but my Imitrex injections wipe them out immediately. I average 2-3 a month. I consider them minor as the med works so well.Sorry to hear of your vertigo. That must be a real challenge.


    Thanks for your suggestions! I do think the fatigue is from the Endotoxins. Michael said it was & on one of the Cpn treatment handouts....it lists extreme fatigue as an Endotoxin symptom. I've actually improved over the past 3 days, so I'm glad it's not with me all the time.

    Rest & water ARE biggies. I do both. I drink so much water; I must pee over 20 times a day! (At least!)

    You mentioned that you have TMJ too. Have you found it improving with this treatment? Have you found ANYTHING that helps? I've tried a lot, but can't seem to find anything that really helps my nighttime bruxism significantly.

    Well, we all seem to be longwinded! I'll say good bye for today! SO glad to have met both of you here!

    P.S. Jeanette...Congratulations on your weight loss! I am in awe at your exercise routine! No wonder you are fatigued! Weight is not a problem for me...And I thought I was doing good with walking my dog & going to the Y Arthritis water class twice a week! That's enough for me right now. But I can understand your feelings about not wanting to lose your committment to exercise. I hope you find a healthy balance for you.

    PPSS Wasabi...I can relate to going to numerous Dr's, P.T's, etc. over the years! Most of mine have been at least understanding...Some more helpful than others! I'll write later about my experiences! Sorry your current PCP is bad. I'm glad you have found Dr.P & Michael!

    [This Message was Edited on 01/28/2006]
  18. CAAnnieB

    CAAnnieB New Member

  19. Jeanette62

    Jeanette62 New Member

    Good Luck at your appt today. Hopefully there isn't too much rain. I enjoyed reading your post, but I'll have to respond to it later.

    Take care,

  20. CAAnnieB

    CAAnnieB New Member

    Hi Jeanette! Wasabi are you still out there?!

    Well, my appt. went well today...Except I came home with MORE PILLS!!! Ugh!

    Am off to the pharmacy to get my INH...Hope my bod does O.K. with it!

    2 weeks later; I'm to add the Flagyl routine.Boy am I glad I have handouts for this protocol! I need to update my 3x5 cards that tell me when to take what...

    More later!


[ advertisement ]