9

Submitted by wiggy on Wed, 2007-05-09 10:09
Yesterday, I started pulse 9, I normally wait 4 weeks between pulses but decided to pick up the schedule since I am feeling ok. I went to eye doctor Monday as my daughter did not pass school eye exam so I had to take her in. I made an appointment for myself too. My daughter was given a script for glasses and we pick them up next week. Dr. was concerned that I had not been in for 2 1/2 years. I feel like a big part of my life is going to doctors and I get so tired of it. I was born with small cataracts that my eye doctor wants to remove so I can have 20/20 vision. My corrected vision allows me to drive therefore as long as I can drive my catarats are staying with me. My doctor doesn't understand this as my insurance covers...why wouldn't I want perfect vision. He said it will have 0 impact on my MS. I say famous last words, as the procedure will not have an impact on his health but it will mine. Why doctors do not understand this is because it hasn't been studied. I know just from talking to others, most procedures on people with MS are not easy recoveries. I guess I didn't explain that every procedure I have had since I have had MS causes me loss of function. I think I will write a letter to him as he told me as I was leaving his office, "your vision will fail in the next few years and I will try my best to correct with contacts but I am not going to be able to do it - go to the drug store and buy over the counter glasses so you can see." His tone is angry. I asked him why this was going to happen and he explains I am aging. He than thanked me for coming in to his office. The facts are in the last 2 1/2 years my vision hasn't changed and my cataracts have remained unchanged. His other point is if and when catarats change I will need surgery. I am prepared to have this done when this happens. Not until this happens. My brother is blind in left eye - some condition similar to macular degeneration. I need to get him on the protocol but he is even more stubborn than me. He does not believe that one treatment can fix so many disorders. He always had poor vision, he finally had lasik and was able to see great for about a month and than he eye failed him. The good news to report is my husband had 0 reaction to NAC over the two week period. My daughter is next. I will let you know how this pulse goes.

On Wheldon protocol for MS since April, 2006.  doxy 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyl Pulses start end Sept., LDN 2004

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tini pulses,100 mg diflucan, 4.5 ldn; Wheldon protocol for MS April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.

Wiggy, Cataracts are no fun - as you know. Both of my corneas were replaced because of steroid-induced cataracts, because of iritis. As I know now, this was done when I had MS, than as yet undiagnosed. But, I did wait until they really interfered with my life - I could only read large-print books and lights were becoming dangerous when I drove. My children were grown, though, and my work was very flexible. My load had not yet built up enough to impact my body and make me exhausted the way it had done a few years later. Your body, I have to agree, has a lot to do just now. This is all specutation - the way I perceive these things in my world.

 

Rica PPMS  EDSS 6.7 at beginning - now 2.  Began CAP Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith,  cont. flagyl  total 42 pulses NC USA

3/9 Symptoms returning. Began 5 abx protocol 5/9 Rifampin 600, Amox 1000, Doxy 200, MWF Azith 250, flagyl 1000 daily. Began Sept 04 PPMS EDSS 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Hi Wiggy, please to hear you are feeling OK enough to do a pulse.   Ella would agree with you, anything that she puts in her body or is done to her body has led to exacerbations.   People don't understand the effect of stress on the MS body.

Good luck with your pulse, I hope it all goes well and bears some good fruit...Michele: Wheldon CAP1st May 2006 IBS, sinusitis, alopecia, asthma, peripheral neuropathy. 26th March 2007 continuous Flagyl at 400mg with 5 day pulses at 1200mg every three weeks. Spokesperson for Ella, RRMS Cap Started 16 March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Hi Wiggy,  Your concerns plus Dr. Stratton's "recent observations" equals much food for thought 

Joyce~caregiver-advocate in Dallas for Steve J (SPMS) / Cpn indicated by reactions; Mpn, EBV, CMV positive; elevated heavy metals; gluten+casein sensitive / Wheldon CAP since Aug. '06 - doxycycline+azithromycin+flagyl pulses; antivirals; chelation; LDN.

Joyce~caregiver-advocate in Dallas for Steve J (SPMS).  CAP since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infections, elevated heavy metals, gluten+casein sensitivity. 

Thanks Joyce, for point us to the recent observation post that Jim made back in September last year.   I'd read it before but I always get more understanding from subsequent readings.   I think every newcomer should read this after they have gotten their first glimmer of understanding from the easy pages of the handbook.

Michele: Wheldon CAP1st May 2006 IBS, sinusitis, alopecia, asthma, peripheral neuropathy. 26th March 2007 continuous Flagyl at 400mg with 5 day pulses at 1200mg every three weeks. Spokesperson for Ella, RRMS Cap Started 16 March 2006

Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.

Thanks everyone for your comments - Rica, as far as these cateracts go - I will wait until I need it done. I wanted to celebrate that I had no vision change for past 2 1/2 years and instead I left the office worried about eyesight but feeling better about everything today. Michele, it is great that Ella recognizes this now as I put myself through a lot after I was diagnosed as far as medical procedures go and I probably would have done thing differently if I knew how my body was going to react. Joyce, thank-you for pointing towards the recent observations as I may have read this in Sept. but brain-fogged - I do not remember. I am going to take this to my doctor as she thinks I am going to be done in a year. Knowing I have been infected from head (eyes) to toes (nail fungus), and my reactions to NAC - I am going to be doing this for a while - this stuff is all over. On Wheldon protocol for MS since April, 2006.  doxy 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyl Pulses start end Sept., LDN 2004

5oo mgs Ceftin 2 x/day, 500 mgs Zithromax, 500 mgs 2 x tini pulses,100 mg diflucan, 4.5 ldn; Wheldon protocol for MS April, 2006 to May 2008. 2008 MRI shows NO NEW DISEASE ACTIVITY, 2012 MRI no new disease activity.

Wiggy, I can't find the link, but DW has not only experienced his vision not getting worse, but improving much to the optician's amazement.  He hasn't needed new glasses now for ever such a long time and in fact finds that one pair is now actually too strong, so I think if you are on CAP, the normal rules of vision deteriorating with age are no longer necessarily true........Sarah   An Itinerary in Light and ShadowWheldon regime since August 2003, for very aggressive SPMS.  Intermittent therapy after one year. 2007 still take this, now two weeks every three months, but still slowly improving and no exacerbation since starting. EDSS was about 7, now 2.
Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.