My Dr. Powell Experience...

First off, I want to thank Jim, Raven, Prescansario and anyone else that encouraged me by their kind words for Dr. Powell.  They were all nothing short of true!  The fact that I drove 3 hours each way and got a flat tire I still feel like my consult went exceptionally well.  His office is very modest and is FAR from the ambience of the ‘cash cow’ corporation I was used to (Holtorf Medical Group).   I am in NO way knocking a physician for having a 52 inch plasma on their wall for patients to view, but just stating Dr. Powells office was very simple..    once we sat down he already had a pretty detailed history on me as  I sent him a narrative bio on myself to help give him a possible heads start...  He did ask me a few questions, but after about 5-10 minutes in he began to focus on explaining his protocol.  This was about the time I began to get impressed!  When he speaks you get the strong impression that medicine is something he is very familiar with.  He also spent a short time explaining a new focus of his practice which will focus on genetic side of CFSi.  My impression was he is gonna start offering genetic testing that will show individual kreb cycle deficiencies.  This way he could be more specific with possible needed supplementsi.  After the genetic cause of the methylation dysfunction is determined, it can be corrected with nutritional supplementsi needed for the individual patient”.  He believes The methylation cycle affects the body’s ability to detox, the immunei system, and neurotransmitters.  He is hoping this testing will eventually be affordable (as of now its $625). So after he talked about the future of genetic testing , He began to explain EVERTHING about his current protocol in detail, along with rationales.  50-60% of the things I saw on his protocol I have yet to try.  This excited me!  I got the impression that his protocol is pretty diverse, but one is NOT forced to utilize everything.  I would say half the items he recommended me were prescription items and the other half were natural over the counter items.  As for Dr. Powell, he is VERY intelligent!  Does he know everything?  Absolutely NOT, but no physician does!  I have been to a few physicians who gave me their promise, with full confidence, that they could get me to feel better.  Were they all lies?  Of course they were!  so any physician that THINKS they know everything that surrounds CFS is full of S@^*.  If these doctors did KNOW EVERYTHING about this condition (CFS), it would NOT be called a syndrome (unknown cause)?    With that said, it was refreshing that Dr. P was humble...  As intelligent as he is, he will let you know all the question marks that surround these conditions and the current trend of treating them.  I respected that more then anything!   Dr P had spent close to an hour with me and I never got the impression time was more important then his patients!  This meant a lot too. Well, I am beginning to feel as though I am rambling, but I just want to say that I really enjoyed my consultation with Dr. Powell.  I walked out feeling better then any post physician consult.  Though this protocol MIGHT not work for me (but I HIGHLY doubt I wont see some progression), I got the strong impression that Dr. Powell is willing to change things if needed.  He seems flexible.  His humility makes me believe he will be willing to change if something does not work, possibly add things in the future, and his desire to stay current on medical trends are ALL very refreshing!  Would I recommend Dr. Powell to anyone including a CLOSE relative?   ABSOLUTELY!  There are NO guarantees that he will get me where’d I’d like to be, but I do know one thing...  he is gonna do all that he can to TRY!  I remember a quote Prescansario when I asked him if he’d recommend Dr. Powell...  he said “just get him in your arsenal”...  well, he is the most competent/compassionate doctor I have met to date and I am glad to have him on MY SIDE! 

Comments

 SS- I think it's hard to

 SS- I think it's hard to compare, I'm a number of years into the protocol and you are just starting. I think if I had started with plaquinal it would have been an easier start with less die-off. You have been very ill with a plethora of things. You'll have to work with him to adjust things, find out how you react to things, bit by bit start to set the juggernaut that has been careening out of control to rights. I know you are eager and concerned about whether this will work for you, but I don't think my experience has a lot of bearing for someone just starting out. If you read Dr. Powell's letter in my post in the Handbook, I think it explains why he is starting you out the way he is. You have to see how your own system reacts and work with him to change things as needed depending on how your body tolerates each element.

CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, INHi 150mg, Magnascent Iodine 20 drps/day, T4 & T3

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

 I have stopped it for now

 I have stopped it for now as I'm experimenting some other things. It definitely potentiated antibioticsi, and according to Dr. Stratton also has some antichlamydial effect of it's own.

CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, INHi 150mg, Magnascent Iodine 20 drps/day, T4 & T3

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Thanks Jim. Did you notice

Thanks Jim. Did you notice a difference while on it? Does dr P know you are for now off it? how long were you on it? I know we are all different and respond differently but did you get any side effects from it? Are you on the methylation treatment now? I just got my cream today. It was $, my insurance doenst like to pay for compounded medications and evidently this one is expensive to make. Wonder if there is someplace I can get cheaper online. I am gonna go try it now. I also take the supplementsi he suggested. Tomorrow I get my t3 and reverse t3 test & liver too, hopefully they are okay because the iodoral he mentioned you take for thyroid is suppose to be drying (he told me this) and that if my #2 biggest problem next to the dizziness.  

 

31 year old woman in Oregon. Living w/Sjogren's, peripheral neuropathy & unexplained dizziness since 6/2006. On CAPi since summer 2007 & Infrared TX. Doxyi 2X a day daily 100mg each, Zithi 250mg 3X a week, Flagyli every 3 weeks for 5 days &

31 year old woman in Oregon. Living w/Sjogren's, peripheral neuropathy & unexplained dizziness since 6/2006. On CAPi since summer 2007 & Infrared TX. Doxyi 2X a day daily 100mg each, Zithi 250mg 3X a week, Flagyli every 3 weeks for 5 days &

Padeyeas, did dr. P

Padeyeas, did dr. P recommend Plaquenil for you?

Jim, did you stop Plaquenil? I dont see it on your signature anymore. 

 

31 year old woman in Oregon. Living w/Sjogren's, peripheral neuropathy & unexplained dizziness since 6/2006. On CAPi since summer 2007 & Infrared TX. Doxyi 2X a day daily 100mg each, Zithi 250mg 3X a week, Flagyli every 3 weeks for 5 days &

31 year old woman in Oregon. Living w/Sjogren's, peripheral neuropathy & unexplained dizziness since 6/2006. On CAPi since summer 2007 & Infrared TX. Doxyi 2X a day daily 100mg each, Zithi 250mg 3X a week, Flagyli every 3 weeks for 5 days &

I must chime in here

I must chime in here too...:) Three Cheers for Dr. Powell and Doctors like him...(which are few)... Been seeing him for 5 years now, been on many protocolsi. He is one doctor that hasn't given up on me. I LOVE having appts with him cause he is always full of new information. I have recommended other people to see him. They go and then after 3 or so months they give up. And then jump back going to regular G.P.'s looking for answers. I was told that I should learn to live with what I have and go to a Mental Hospital or Care Home. But NOT by Dr. Powell. I will ALWAYS be grateful to Dr. Powell. Never once has he told me he was giving up on me. Stick with him Keith he will help you get better. Things change alot don't get discouraged....:)
jodie

I dont think we will get

I dont think we will get away from not talking about what our docs have us on or why.  Alot of us have signatures that list what we are taking.  Is our signature line seen as 'gospel'?  In the past, if my doc recommends something, and I question it, I have come to the board and posted what he recommended, what I may be concerned about and ask for opinions. Other people have done the same.  Also, I think it is up to the person when asked about their protocol to say, 'I really dont want to discuss the specifics of my protocol', or they can just not respond.  Since we do have so many new members and if it is a concern, maybe there needs to be a visible disclaimer at the top of the webiste that states that each person is different, tailored made program,  etc., because I just cant see us getting away from not talking about our own individual protocol. 

Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpni, myco, EBVi, CMV. on NACi 3000mg, doxyi 100-2xday, azith 250 m/w/f/sun, progesterone, estriol, synthroid, pulsing w/flagyli,

Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, hormonal inbalance. right arm neuropathy-getting better. cpni, myco, EBVi, CMV, HHV-6. Capi began in 6/07. NACi 2400mg, minoi 100mg bidi, biaxin 500mg bidi. cytomel, flagyli bid continuously.

Keith- your statement, 'NO

Keith- your statement, 'NO blueprint for treatment" is really right on with CFSi/ME/FMSi and a host of other things. While we have had a general experience that most MS folks have less severe "up front" reactions from the CAPi (though a number appear to have more broadly disseminated infectionsi, overlap in symptom with CFS and have strong reactions to the CAP-- see Artile for confirmation!), on the whole CFS/ME/FMS patients typically have really unpleasant reactions to starting out. Treating this group, Dr. Stratton said has the highest drop out rate because of the difficulty of treatment for them. I think this  was one of the reasons Cheney never followed up the Cpni direction, because of patient reactions to the protocol. 

You can see why Dr. Powell has been looking for ways to build up the resources in the body and knock down the bacterial population via less severe means, especially for this population of patients. I know for a fact that he's had a number of drop outs of people expecting this to be gone in 3 months, or unwilling to go through antibiotic reactions. It's not that he needs the patients, it's that, by God, the man foolishly wants to help them and had to find other ways. What kind of doc is that? A rare one. 

CAP for Cpn 11/04. Dxi: 25yrs CFS & FMS. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, INHi 150mg, Magnascent Iodine 20 drps/day, T4 & T3

 

CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Raven, i will take that "i

Raven,

i will take that "i told you so" alllllllllllllll day long!  hahhahaah  i am just happy to be part of Dr. Powells practice.  thanx again for your HONEST opinion on him, it meant a LOT to me.  i think referrals are the greatest form of advertisement.  prior to seeing him, i was STUCK between seeing him and going back to Holtorf.  i am in NO way bad mouthing Holtorf (they got me from 20% to 30-40% functioning).  its just that Dr. Powell was HALF the price (i'm in my last year of nursing school) and he is SOOOOOOOOO much more competent with infectious disorders.  again, i dont know if Dr. Powell can get me where i'd like to be.  if i NEVER saw 1% of progression i would NEVER blame it on Dr. Powell, but rather i would blame it on the enigma that surrounds this syndrome/disease.  there is NO blueprint for treatment.  thats what adds to soooooooo much frustration for us.  hopefully in 10 plus years (we'll all be feeling MUCH better) and there will be MORE testing and treatment options.  to date,  to date, testing is not 100% reliable and treatment seems to focus on subjective means (how the patient feels) rather them SOME test stating improvement.  dr powell expressed frustration with testing and the lack of it.  he explained to me the MULTIPLE forms of new mycobacterium that are being seen with NO means to test for it.  i am in NO way trying to scare anyone.  i am just trying to point out the unreliability of testing mediators for a lot of CFSi, fibro patients. 

 there has been a few concerns about whether dr. P is still an advocate of CAPi.  i would definitely say he is, but he MIGHT be a little MORE cautious prescribing it as part of the initial protocol.  he expressed his concern with me about possible hidden viral infectionsi coming to the surface with CAP. i would say he is just looking after the patients long term success and ability to tolerate treatment (slamming them with antibioticsi early on). 

he did have me continue CAP.  to be honest, i went in there with a TOTAL open mind and never ONCE recommended CAP.  i guess that alone states he is still using CAP.  to be honest, if he would have advised me to stop i would have.  though i know theres SOME infectious agent that contributes to my symptoms, he is the physician that sees patients like me on a daily basis.  he knows the trend of treatment and what has been or has NOT been working for his subset of patients.  honestly, deep down i wanted him to tell me to STOP CAP.  not because of the side effects (as i have NOT seem any other then flaygl and Herx of all the antibiotics), but maybe i am scared of the LONG term committment.  34 single?  you put the puzzle together!  hahahahaahahahaha  JK  i guess the moral of my point is for those that think Dr. P is NO longer prescribing CAP.  he is NOT against them (as he had success with them), but he ultimately wants to prevent relapse along with setting the table (starting with antiviral and other forms of antimicrobials) for possible CAP in the future..

 please keep in mind these are MY sole interpretations and i could be slightly or TOTALLY off base to his (dr Powells) thoughts or concerns... 

 

Keith

 

Doxyi 100mg 2X's/day; Zithro 500mg MWF; Flagyli Pulses; NACi 2400mg; Testosterone 200mg; Armour thyroid 3 grains; Cortef 15mg; life extension vitamin/minerals

Doxyi 100mg q12hr; Biaxin 500mg q12hr; Amoxicillini 500mg q12hr;  Armour 1 grain; T3;  Cortef 15mg; 4000 units Vitamin Di; Ursodiol; prescription enzymes; life extension vitamin/minerals

Keith - 34 and single? The

Keith - 34 and single? The pills are a little inconvenient, but sure won't keep you from having a life. As a matter of fact, you really don't need to mention the protocol to anyone you're not dating seriously. And the only time the protocol interferes in living whatever your version of normal might be (mine is weird, but it's my 'normal') is when flagyli might keep you from having a social drink. Even then, I just tell people, I don't feel like a drink tonight and let it drop. Like you, with little reaction to the meds, I've found no need to discuss abxi or my illness with anyone unless I make a choice to. It hasn't hampered my dating! Only fourteen people in my life know, four of them being people I've told because they should be on abxi themselves (and three of them currently are). You'll be fine! Go date. You have a lot of life ahead of you now.

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

I'm on pins and needles. so

I'm on pins and needles. so what were his recommendations? what supplementsi? what antibioticsi?  

Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpni, myco, EBVi, CMV. on NACi 3000mg, doxyi 100-2xday, azith 250 m/w/f/sun, progesterone, estriol, synthroid, pulsing w/flagyli, tinii<

Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, hormonal inbalance. right arm neuropathy-getting better. cpni, myco, EBVi, CMV, HHV-6. Capi began in 6/07. NACi 2400mg, minoi 100mg bidi, biaxin 500mg bidi. cytomel, flagyli bid continuously.

I think perhaps the

I think perhaps the recommendations were left out purposely, Sharon. We've only just been through the entire debate on how each of us has individual diagnoses and individual treatment plans and how perhaps that shouldn't be put out there as gospel, since the site now has SO many people who might not be able to discern between their needs and the prescription given to one person.  I'd say it's a particular concern with this doctor, whose every word is so highly regarded.

 If I'm wrong, I'm sure I'll be soundly corrected. Wink

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi

MacK,  I think you're

MacK,  I think you're right.  Here's an example:  There has been some posting lately about methylation.  Methylation is highly variable among individuals, and that goes double for sick individuals.  From some of the methylation material you would read, you'd think you need to go strong on the folate">i intake.  Steve was getting plenty of folate from different sources until several months ago.  After considerable investigation into the subject, we experimented with cutting out his folate, and he does better without it.  Recent testing revealed that he has plenty of folate without supplementation.  That's right for him, but many others might really need the folate.  Same goes for B6.  That's something Steve needs, but I don't do well with it at all. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi).  CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity. 

  Excellent blog Padeyas! 

 

Excellent blog Padeyas!  Nobody knows everything about anything, but not many docs are humble enough to admit this............Sarah

An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

I have concerns about one

I have concerns about one aspect of my body healing & that is toxins.  Since I have started the protocol & put on weight, the cellulite on my body, well...it looks like that of a 70+ yr old woman.

I wonder, out loud, if methylation will make a difference?  I am desperate really..

dazed & confused

CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonin">i, GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 2-6-08 7th pulse 2 X 375 mg 2day+

CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<

Hey, hey, hey! Let me be

Hey, hey, hey! Let me be the first to say "Told ya so!!" Oh that felt sooooooo good. I'm so very happy for you. As I was traveling home from my first appointment with him, I was giddy with my good luck. And many thanks to David Wheldoni for referring me!!! Raven CAPi since 8-05 for Cpni and Mycoplasma P. for MSi and/or CFSi

Feeling 98% well-going for 100. Very low test for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath

How nice! Well, now that

How nice! Well, now that you have your individual protocol to follow, let's see you get better, and soon! Will you also be staying on abxi?

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems.  Mohandas Gandhi

The difference between what we do and what we are capable of doing would suffice to solve most of the world’s problems. Mohandas Gandhi