Feeling Good.
Hey all!!!
Just wanted to post up an update.
Brief history:
Diagnosed with MSi Jan 2010 at age 23 after 2 relapses lasting 3 months each. Symptoms: Chronic fatigue (couldnt work), weakness on right (foot drop/hold anything in hand), daily migraines (ddebilitating), vision disturbances, non-resolved tingling on right, chronic nerve pain in right Great toe etc.
I have been on Doxyi/roxyi & NACi combination since November 2011 and introduced Flagyli in January. I am about to start my 4th pulse (not looking forward to it) HOWEVER, I just want to report that I have been feeling very energetic for a while now. I have had some flair of MS symptoms that may be due to extreme heat (loving hot showers after work), or they seem to crop up about 2 weeks after the last flagyl dose. Its a trend.
I have been having the CCSVI angioplasties since october 2010. Despite its ability to reverse all my symptoms, they have never been able to hold for very long. A common trend observed is that I would feel great for < 3 months, then I would schedule surgery again in month #4. Well, since starting this treatment I have had 1 surgery (December) and I am already in month #4 and I have zero symptom return :) Infact, I usually decline very quickly without the treatment - however If anything, I am experiencing increased energy, zero weakness, zero fatigue, I work 40hours a week and study from 5pm (after work) until 9pm daily with no decline in site! Let me tell you - the vascular system isnt easy study either!!
I am so happy ! I want everyone reading this to find some sort of motivation and keep marching ! THank you so much Sarah and Dr. Wheldon. Your stories and websites have inspired me - and I have spent all my time spreading the word of CPni implication in MS. There are a few of us that are on this treatment - it makes for a great support group. I also set up a CPn faceboook page, it makes it easier to communicate. I want this to be recognised as a treatment - because it works !
THank you so much. Thank you.
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Thank you so much for posting your update. It's hearing stories like these that keep us all motivated. You go girl!
Marianne
Misdiagnosed with RRMSi 2010. Dxi CPni and multiple viral infectionsi in 2011. Dx Autonomic Dysfunction 2012. Did Wheldon protocol for six months 2011. Currently taking Valcyte, Famvir, Equalibrant and supplementsi.
Myrapee, I would like to see your facebook page could you pmessage me the information?
Thanks, Louise
Oh my goodness, Myra, what a wonderful post: thank you! It just goes to show that if someone can start the treatment young, they have all to gain. Like many people, I started developing MSi symptoms at the same age as you but the Vanderbilt MS treatment didn’t become known about until I was nearly forty: Cpni itself was not thought to ause any more than walking pneumonia until just before that. I was about 43 before my MS went really progressive but I know now that even though I have stiopped progression and improved a lot, I will never be as perfect as had I started at 24.
Now to find your facebook page!.........................Sarah
A Journey through Light and Shadow
Great to hear you're doing so well, Myra. So good that you've been able to start the treatment so early on. I'm sure that's the key to success. So pleased it's going well for you.
Neuroi symptoms & many health problems from 1989. NACi+all supps(04/11) doxyi(05/11) roxi(06/11) tinii pulses(12/11-03/12, 10/12-01/13), amoxi(02/13)
You know my initial relapse occured immediately after a 3 week respiratory infection turned pneumonia. That's how I knew there was something sinister at play. I always felt uneasy with the term "MSi" and I refused to be a statistic. I had a yearning to figure out this MS and I sure as hell wasn't going to receive help from my Neurologist. In fact, I was told 1 yr ago that I would be immobile within 5 yrs because I had a progressive onset. Hmmmmf!!
Anyhoo.. Its so very exciting. I hadn't realised I had all the energy in the world until I had started working full time for the last 6 weeks.. usually I would be pretty exhausted by day 3 and would require 2 days off for recovery. Nudda!! I even walk up and down 6 floors of stairs at least twice a day for incidental exercise.
Im about to lay low, just begun another Flagyli pulse. Wish me luck!
I thank everyone here. You are all so inspiring, and all so helpful. THe handbook is great, too - referred heaps of people to it and My doctor even printed out a WHOLE copy of it for himself !
Love to all !!!
ps. facebook pg is just cpni - chlamydophila pneumoniae .. and the picture is a purple test tube
..SYMPTOM FREE 06/2012.. RRMSi diagnosed - 01/2010 CAPi commenced 18/11/2011 *Doxycycline 200mg *Roxythromycin 300mg *Flagyli 1200mg 3 days/month
Myrapee, I think that might because your initial episode of MSi symptoms. Not sure how many episodes it takes before they are called relapses. Maybe Sarah will correct my terminology. Always good to state it in medicalspeak if you can so that when you talk to docs they might not initally write you off as knowing nothing! Louise
Congratulations, and thank you! Sharing your success journey helps all of us; spirit is contagious, images of return of health, and normal life aids in keeping the focus right.
Good luck with the pulse; may it be easy, but also productive!
Borrelia/Cpni arthritis: joint, skin, eye, CNSi, respiratory, UG involvment; fatigue. Borrelia Elisa&WB IgG, and CPn IgG and IgAi pos, HLA-B27 neg. CAPi 5/9/10 -> now: Dox, Rox; pulsing Tinii, B3; NACi, D3, etc supps. +herbs
Myrapee
Your story is wonderful! It only confirms my feeling that beginning treatment earlier in our lives is a hugely better time to get out the hell-hole that this can become. Great choice you made!
Going up multiple flights of stairs? Incredible! Once, years ago, I got to the top of our one flight and realized I would NEVER again be able to do that. Then things happened - but, still, six flights!? I am so, so happy for you.
Rica
3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan In for the duration.
Congratulations! And good luck with your next pulse!!
Best, Timaca
on valtrex 500 mg tid
http://whispersfromthefather.me/
Thank you for the lovely responses!! Now you're motivating me further :)
Yes, 6 flights - can't rely on hospital lifts to get you to work on time, so it's easier to run up 6 flights in a few minutes.
It's very weird - I experienced strong herx yesterday (metroi pulse - day 1) and today (metro day 2), my energy has shot out through the roof. I honestly feel as though I am flying in the air. So free and relaxed - this is normal, isn't it? There is no end to this energy - I wish to feel this way everyday *very confused*
Anyway, thank you to everyone, everyone, everyone. You are all so amazing!
M
..SYMPTOM FREE 06/2012.. RRMSi diagnosed - 01/2010 CAPi commenced 18/11/2011 *Doxycycline 200mg *Roxythromycin 300mg *Flagyli 1200mg 3 days/month
Hehee, what a wonderful post Myra :-)
You've inspired me to get started on the Tinii, think the time is nigh! xx
M.S/CFSi '00, CAPi 02/12. Doxyi, Azith, Metroi, Naprox, NACi + every supp under the sun + Myhill methyl'
Neuros are SO very encouraging aren't they?
Well done you, now to learn to tap dance in killer heels for your next trip to see the neuro!
Progressive MSi dx2006. LDNi & CAPi: Wheldon version. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.Water kefir. Pulses- a lot!...I can because I think I can.
myrapee
Can't find your facebook page
Can you pm a link?
thanks
DAILY: NACi 2400MG , DHEAi sublingual , CoQ10 200 mg, vit D3 2,000 IU, multi vits, Folapro, Doxyi 200 mg. 2 or 3 PER WEEK Astaxanthin, Azithromycin 250 mg,B12, Coffee retension enema, Flagyli 6 day pulse, Thyme Thujanol twice a week
Yes I will PM it to you :)
I have another thing to add...
..I suffered with Chronic Pleural Pain for 13 years. For 13 years I was unable to take a deep breath without succumbing to sharp chest pains that would have me writhing on the ground in pain.
Today, for the first time ever, I TOOK MY FIRST DEEP BREATH WITHOUT PAIN!
I have turned into a babbling baby, who knew such a simple automatic task could be so precious and missed after 13 years.
This is amazing
..SYMPTOM FREE 06/2012.. RRMSi diagnosed - 01/2010 CAPi commenced 18/11/2011 *Doxycycline 200mg *Roxythromycin 300mg *Flagyli 1200mg 3 days/month
Happy, happy time!! I had the SAME thing - though mine did not put me on the ground. It IS incredible when it is gone!!! I had mine for over 45 years.
Rica
3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan In for the duration.