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arrietam
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| Joined: | Mon Feb 15th, 2010 |
| Location: | California USA |
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Posted: Tue Feb 16th, 2010 16:17 |
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Hello all, I've been following your blog for about 1/2 year and have decided to take a very important step into curing my CFS. As time goes by it seems to be getting worst and worst. I've blammed my fatigue on everything hoping I could fix it but no. I have made an appointment with a local doctor who practices MP.
What i've expericenced so far is;
-Irritability
-Unrested sleep
-swollen nodes under my chin area and underarm.
-Constant headaches leading up to full blown migranes.
-Short term memory loss
-Confusion
-Low Blood pressure
-Panic Attacks
-Shortness of Breath
-aching body after exercise or strenous activities.
-intolerance to alcohol*(I don't drink much but when I do it takes sometimes up to 3 days to recoup from the effects of alcohol).
I was also diagnosed by my PCP with EBV. Although many tests have suggested that CFS and EBV do not go hand in hand or that one causes the other. I am a strong believer of the opposite. I have put this off for some time due to me being scared, scared of being on medication for 1+ years. Also the doctor does not accept insurance so it would be a $300+ initial investment. This isn't much for the return of my LIFE but I was strapped for cash as many of you out there were or are. This is affecting my everyday life, work, home and relationship. I've had many tests done to rule out any other issues. I've had Sleeping Tests, Multiple Sclerosis, EKG, Pschychiatric evaluation of me being possibly Bi-Polar. As I write this I see this was a waste of time in some sorts all the issues i'm experiencing lead to possibly CFS.
One question before I jump on the boat to happiness.
Once on Phase 1, will the cocktail of meds render me incapaitated. In other words can I still go to work ? I have a full time 40+ hour a week job.
Thank You All
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Hopefull
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Madhouse
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| Location: | New Jersey USA |
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Posted: Tue Feb 16th, 2010 23:42 |
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First off Welcome Aboard arrietam. Reading your post the first thing I thought of was hypoglycemia. It is one disease that mimics many others. My wife had many if not all of your symptoms and after several years of suffering she was cured in a matter of weeks after getting on the right diet. Just a thought.
To answer you question, of course you will not become "incapacitated". I work 2 jobs 16 hrs a day and do a lot of physical labor. The only side effect I am having is my work is becoming easier! 
I would jump in as soon as you have spent many hours learning all you can about the MP and then expect to feel so much better in no time. Don't forget, you go at your own pace.
Good luck!
Last edited on Tue Feb 16th, 2010 23:44 by Madhouse
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15 Years IBS, 2 years RA.
Started MP June 16-09.
Phase III Oct 3-09.
25-D 10 Meds: Benicar 40mg qid, No abx. Avoiding direct Sun, Using NOIRS.
Symptoms 80% resolved.
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Cynthia Schnitz
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Posted: Wed Feb 17th, 2010 01:30 |
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| Well, I think MH is a little bit optimistic, probably because that is his experience. Mine, and I have had it much easier than most, is that it slows you down considerably, and I always warn people that it will probably slow you down quite a bit, but if you take it easy and don't push too hard to make progress, you should be OK. I have always been able to take care of the squeaking wheels, but being retired, I usually don't have very many squeaking wheels. I think how hard it is going to be, depends on how sick you are, and how long you have been sick. Certainly there are many more people on the MP that were sicker than Madhouse and I, and maybe some of these will chip in to this discussion. Cynthia
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MP start 10/08 (no breaks) | Spondylitis 97, early Diverticulosis 98, early AMD 08, Calcium anomaly 95, TypeII Diabetes(?) 02 | 25D=10.1ng/ml 12/12, (preMP 125D/25D=47/43) | My progress
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phillyguy
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Posted: Wed Feb 17th, 2010 04:27 |
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| I would say that I feel slightly worse on the protocol, on average, but no longer have those really scary days where I feel beyond horrible. The IP is more smooth which actually makes me more productive. I would say the earlier you act the better. I wish I had started the protocol a year before I did.
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arrietam
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| Joined: | Mon Feb 15th, 2010 |
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Posted: Wed Feb 17th, 2010 15:50 |
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Thank's all, it's hard to measure how bad I feel at the moment. It seems (CFS) to have it's mind of it's own. Sometimes I feel fantastic but that rapidly goes away. As I write this I am having a relapse that's lasted for about a week and still going strong. I can say for sure that since the years have gone by it has been getting worst.
My fear is jumping on MP and feeling worst than I do..But hey it's worth it right ???
Thanks all. I will post all my updates as soon as they become available. 
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Hopefull
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arrietam
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Posted: Wed Feb 17th, 2010 15:50 |
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Thank's all, it's hard to measure how bad I feel at the moment. It seems (CFS) to have it's mind of it's own. Sometimes I feel fantastic but that rapidly goes away. As I write this I am having a relapse that's lasted for about a week and still going strong. I can say for sure that since the years have gone by it has been getting worst.
My fear is jumping on MP and feeling worst than I do..But hey it's worth it right ???
Thanks all. I will post all my updates as soon as they become available.
____________________
Hopefull
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ammc
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Posted: Wed Feb 17th, 2010 20:55 |
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Arrietam,
I think it is very easy to read the boards and shy away from MP. Goodness knows I was terrified for a year before I finally bit the bullet I really wanted to do it but just was to afraid after reading for 17 months of others stories. I am now in Phase 2 17 weeks in and really other then vein infammation ( which is pretty bad some days) I like Madhouse really dont' have that differant of a life. I sleep a couple nights a week about 12 hours instead of 8 but I still work 45 hours a week and walk on my treadmill 5 days a week and travel for work go to movies etc. No one knows I am sick or on MP unless I tell them I work in Finance so am concerned about my mental abilities for numbers once I start Phase 3 but I will cross that road when I come to it.
I am kicking myself for not starting this last year when I first got sick I was just so afraid of being bed ridden with IP and that still could happen but at this point life is really no differant then it was before I got sick except I feel better now. Each path is differant I am in my late 30's and only sick 2.5 years before starting and even then was still very active so I think every person is going to react different. I also never did get any light sensitivity to date it still could come but I have 3 pairs of Noirs when it does. Then again might not I have three good friends all in years 4-5 of Mp who never got it. However my D25 is 17ng still so it could come when it drops below 12.
I hope things work out good for you. And you may feel worse however it's for the purpose of getting better. I have pretty bad vein inflammation on my once very nice legs right now they could scare small children they look so bad. And yes I was terrified as they hurt some days and look really bad but it's a means to an end. Had I not done this I likely would have ended up with a worse vascular disease down the road. It's worth it..
Last edited on Wed Feb 17th, 2010 21:19 by ammc
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Sicca Symptoms since Jan 2007/ 37 years old /dry eyes/mouth/foot pain in arch|work full-time/exercise daily am highly functional/ 25-D positive Ricketssia/Olemetec Q6 10/20/09 mino q48 11/1/09
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JoelV
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Posted: Wed Feb 17th, 2010 21:04 |
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Just a thought: pain and misery can be good. For example I discontinued my prednisolone (unconsciously I might add, due to reading about MP) last week. Quite suddenly also, from 5mg/d to nothing. I got even more fatigue than usual, some pretty bad joint/muscle/bone pain. Every time I get hit by it, I remember that I'm off the terrible stuff and I somehow feel better. One might even say that I enjoy the pain, because I know whatever happens I'm not going back on steroids and in a way I'm very lucky to have found out about the MP before ruining my life with years of steroids.
It's the same with IP I guess. You just have to remind yourself that you feel bad, but you're actually getting better. Instead of feeling bad and getting even worse...
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Sarcoidosis, symptoms: dry cough, fatigue (confirmed via histology Aug/2009)
Possibly starting MP in Mar/Apr/2010
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arrietam
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Posted: Wed Feb 17th, 2010 21:24 |
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I made my very first appointment to see a MP practitioner. I can't tell you how excited and scared I am all at once. I am happy the docor will be a 45 min drive in traffic not bad at all. I am writing or putting together a list of all my ailments and treatments i've had in the past to present to this doctor.
Thanks again for all the valuable information.
P.S. What is IP ?
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Hopefull
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JoelV
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Posted: Wed Feb 17th, 2010 21:29 |
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IP or immunopathology (otherwise known as Herxheimer shock) is the misery you will get once your immune system will kick back into gear and start killing the bacteria in your body. But as I understand it, if you start slow and careful you can manage it quite well.
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Sarcoidosis, symptoms: dry cough, fatigue (confirmed via histology Aug/2009)
Possibly starting MP in Mar/Apr/2010
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arrietam
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Posted: Wed Feb 17th, 2010 21:33 |
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 Oh My...........Ok I will take it one step at a time and remind myself it's all worth it. I know everyone is different, but I hope these IP phases don't last long.
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Hopefull
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Cynthia Schnitz
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Posted: Wed Feb 17th, 2010 22:18 |
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| I hope you made it a point to talk to the receptionist when you made the appointment to ask if the doctor is interested in having another MP patient, how many MP patients he/she has, etc. A few doctors got on the MP list who really hadn't any interest in the MP. Just thought I would mention this, as a few people wasted money and time on the wrong doctors because they were on the list. Cynthia
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MP start 10/08 (no breaks) | Spondylitis 97, early Diverticulosis 98, early AMD 08, Calcium anomaly 95, TypeII Diabetes(?) 02 | 25D=10.1ng/ml 12/12, (preMP 125D/25D=47/43) | My progress
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arrietam
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Posted: Wed Feb 17th, 2010 22:22 |
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| Oh yes, I told her I was refered to by th the curemyth1 site and she said "fantastic". Although I did check the doctors history and was please to see he practices "Alternative and Integrative medicine". His website is very much up to date and offers great info on all of the treatments he offers including MP.
____________________
Hopefull
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arrietam
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Posted: Mon Feb 22nd, 2010 21:27 |
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| Well I seem to be getting over an episode of real bad tiredness. As time goes by I get more and more tired. I really am looking forward to MP regardless of IP. It's for the best. I'm not yet on MP but hopefully in a few weeks I will. I've been meaning to ask my nausea is getting worst I've read it's a common CFS symptom. Anyone going through nausea ?
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Hopefull
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Sallie Q
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Posted: Tue Feb 23rd, 2010 05:07 |
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Welcome arrietam,
I list CFS myself, but think of it as PVFS
I have a son, unfortunately too sick to do MP , his mental problem was definitely post-viral. I argued in favor of that hypothesis with his doctor 25 years ago (diag. bi-polar) : his present medical team accepts that is so !
My MP doctor thought I would not be able to continue work (more concerned with travel distance away from home if bad IP) . Ha, I have worked near 18 months with no sick leave days, although admit there was one day early on I should never have gone to work
Also one when I would have gone home mid-day but possible sun exposure decided me to leave at my usual time. Made a faux pas eMail to my boss, but did not actually make any mistakes in my work.
I only work 2 days a week, but I have recently turned 70. I fancy Madhouse is a great deal younger than I.
I however, am very light sensitive, after a year was really slack about wearing my range of NoIRs until Joyful helped me to understand the muscle cramps which prevented me from getting any healthy sleep, were a hormonal cascade from light entering my eyes.
I swiped this link from Joyful (thx for everything, Joyful)
You may find it handy
Physicians' concerns about the Marshall Protocol
PS no personal experience of nausea. Some report it. I hope pregnancy is not a possibility?
S
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index to MPKB | MP Sep'08 depression'65, breast cancer'90, Sjogrens| sx CFS, low adrenal,ADD,migraine,BCC; mild stroke, RA| MP conferences
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arrietam
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Posted: Tue Feb 23rd, 2010 16:32 |
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Thanks Sallie Q, I know for a fact pregnancy is out of the question. But my symptoms are uniquely weird at times all pointing to some sort of hormonal issues. I have major libido issues, acne, mood swings. My thyroid tests always come up normal, not even close to hinting an issue with my thyroid.
As I read more and more about CFS it's as if i'm looking into a mirror of symptoms.
Last edited on Tue Feb 23rd, 2010 16:43 by arrietam
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Hopefull
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Joyful
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Posted: Fri Mar 5th, 2010 07:30 |
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Hi and welcome arrietam.
I hope your first doctor appointment went well yesterday. 
Nausea is pretty common... do a search for migraine + nausea to see what I mean.
Some things that help for me are small meals more often, protecting my eyes, and resting in a recliner. On the MP a half dose of Benicar under the tongue will often help very quickly as well.
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