Thank you Sarah I managed to find the info I wanted. It made interesting reading.
My husband isn't sure what I have to do exactly to log my story on the 'forum' and I definitely don't have a clue.
But here goes..... I was diagnosed with MSi in 1986. I initially suffered from optic nueritis.I was treated with acth and my eyesight improved. I then had a tetanus injection which resulted in my losing the sight in one eye. ACTH resolved the problem again. Meanwhile I 'researched' MS and took lots of vitaminsi which helped my fatigue problem, one supplement was called amino ms. I had a relapse after I stopped taking the supplementsi due to no longer being available on the NHS. The relapse, which affected my leg, may have happenend regardless of my taking vitamins. I then had a very bad chest infection/cold. A while afterwards I had difficulty in walking. After an operation I was unable to walk. After intravenous steriods and physio I eventually regained the use of my legs but my walking has steadily got worse over the years.
I was fortunate enough to be told of Dr Wheldon and his treatment by another doctor. When I first read doctor Wheldon's website I was amazed because it was like reading my personal medical history. I had a blood test around 1985 which showed that I had previously had chlamydia. Previously in about 1982 I had suffered from pnuemonia. I had also been told by an alterntive therapist that I had Borrelia. I was diagnosed with fibroidsi at the end of 1980's and went onto to be diagnosed with interstitial cystitisi.
My memory is awful, I have trouble retaining information. I have very limited energy. This treatment seems logical and feasible in that an infection that is not completely destroyed can develop into something else i.e. MS
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Hi Marj, My story has some
Hi Marj,
My story has some similarities to yours. I was diagnosed in 1970 based tinging in the hands and feet and a couple of episodes of optic neuritis. I also was treated with acth with resolution of the attacks. I have also pursued a supplement program starting in the mid-eighties. I have noticed marked progression of the disease during times of prolonged stress and during illness marked by fever of long duration. Particularly during and after a pneumonia in 1985. I am now 57 years old. I have started using a cane this year due to right sided ataxia. I started the Wheldon protocol on Jamuary 1, 2008. I am currently taking azithromycin 250mg 3 x a week. I have upped my NACi from 1000mg a day to 2000 mg a day. I do have periods of foggy headedness but no big die off symptoms yet. I plan to add the doxicycline in a couple of weeks. Onward I go. Good luck with your program.
Tina
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Tina-MSi 37 years;EDSSi 4.5 1/1/08 Wheldon CAPi; Azith 250mg 3 x a week; Doxyi 200mg daily, NACi 2000 mg daily, started Flagyli pulse 4/14/08.
Welcome Marj and I see that
Welcome Marj and I see that you have worked out how to make a post, it will get easier for you as you progress with the treatment because hopefully you will feel clearer in the head.
I had no idea that I had MSi until just after I got married last year but my GP estimates that I have had it a long time - I just thought that I was getting clumsy and/or needed more exercise because I could trip over a feather. Maybe ignorance was bliss. However I began the CAPi last year using NACi and yes it was lousy but as you probably know that is a good sign for us!
The best advice given to me by others here is to go as fast as your body will let you and as Ruthless says, expect the unexpected. Lucky you to be referred here by a doctor, at least there are some who are open to new ideas.
Good luck with your CAP adventure...
Carol
New Forest, UK. Progressive MSi dx 12/06 LDNi 3/07 CAP 6/07: Wheldon
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Progressive MSi dx2006. LDNi & CAPi: Wheldon version. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.Pulses #12...I can because I think I can.
Hello again Marj. This
Hello again Marj. This is a good start from someone who claims to know nothing about computers. Perhaps it is the start of clearing of brain fog. Although it is months ago that David told you about the site, you have started very well. Now you can join in commenting on other people's threads and soon there will be no stopping you!.........Sarah
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Welcome Marj! you are doing
Welcome Marj!
you are doing well, you actually posted on your first try!! that beats me by 2 trys & I am not new to using a computer either. Terribly brain defoggled, pea soup & you can even smell the ham (I forget whose quote that was but I love it)
You are on your way on our wacky journey on the good Ship MAD CAPpers!
Best wishes for a better than expected improvement in your life.
CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, GABA, tarazadone, triazolam, novocyclopine, 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, 1-3-08 5th pulse 1 X 375 mg 4day
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CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#13 1240 mg X 3 days 8-7-08Hey, Marj, you are doing
Hey, Marj, you are doing alright for a newbie. It will become second nature to you in no time. I've sent you a private message with information about what to do, but you have worked it out for yourself without my help...
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
Thank you to everyone who
Thank you to everyone who sent messages. It has made me keen to get into this website lark. I have been doing the CAP treatment for 6 months and I have very recently noticed improvement Prior to treatment I found it difficult to retain info or concenctrate for very long. Its great that my brain cell is not totally useless now but I am not quite at the stage of knowing what Im doing totally all on my own with regard to this computer stuff. My husband does all the turning on the computer and getting onto the website stuff. All I do is this bit of typing. Hopepfully I will be able to log on all by myself soon. Watch this space.......
Marj, How good to hear
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
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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
Thanks for letting me know
Thanks for letting me know that the New Pathway magazine article that Ella wrote has prompted you to share your experiences here. I know that you have been doing the treatment for a while and I'm pleased that you decided to come and see what this community is all about. The more we share our experiences the more we understand the complexities of the CAPi and how each person's experience is slightly different whilst still having many points in common...
Try not to set end-time targets... Some of us get better quickly but many of us do and will take longer. The bottom line though is that most of us will see improvements, and a halt to the progression of our diseasesi given enough time.
Michèle (UK) GFAi: Wheldon CAP 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006
I am stumbling about this
I am stumbling about this website, so sorry if I haven't responded to anyone. I am only back at this area of the website thanks to Jim K advising me to go to 'my account' after I came to a halt when attempting to post a comment.
I read something of interest then spend a lot of time trying to find it again, hopefully I will soon get to grips with getting round this website. I will have another go tomorrow......
Marj- Don't know if this
Marj- Don't know if this will help, but Michele did a lovely job of putting together a page in the Getting Started book:
http://www.cpnhelp.org/getting_to_know_the_websi
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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
Link
Link www.cpnhelp.org/getting_to_know_the_websi click on that and see if it brings you to the page that Jim was suggesting.
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Louise CFSi Began Wheldon CAPi 6/07, Occ. Cholestyramine1-2packets HS/forporphoria&endotoxini sxi, S.O.D.3TID(KAL Brand),VitD3-4000IU, MagnascentIodine 8gtts 1-2x/d, Doxy100BID,Roxi150BID,Tini500mg BIDpulses,CPnPos,BbPos.
At long last I am, I
At long last I am, I think, finally getting to grips (a bit) with this very informative, helpful if somewhat confusing website. Thanks everyone that sent messages of advice and encouragement.