a little bit of good news

Submitted by farandwide on Sat, 2007-05-26 10:10

As mentioned, I got in to see my doctor on May 24.  This was unexpected as his schedule was so backed up, I was being told that I wouldn't get in until September at the earliest.  I was quite suprised and relieved to see him as I had been able to go by and have a blood drawn to check my liver, and wanted to find out what the results where.

As it turns out, I'm in the process of growing a second liver as a redundant system.  No, just kidding.  My liver is fine.  This is good news as I was concerned about some pain I was having in my back towards the lower lateral on the right side, which also extended around my oblique to my abs.  Very strange as I don't often have pain.

Well, as it turns out, that pain was greatly increased on Monday of last week when I really pushed myself at the gym while doing weight lifting that targeted that area of the back.  I pushed myself hard and my back responded in kind.  It became quite obvious that the pain was muscular in nature.  And interestingly, over the next day or two, the pain begain subsiding greatly, contiuing to this day to subside so that it's a very dull ache and only when I kind of twist around to see if it's still there.  The next day I'll be lifting weight targeting that part of my back will be Monday, so we'll see how it goes.

That's only part of the good news.  Another part of the good news is that during my meeting with my doctor, he agreed that I should continue the CAP since I am having gradual improvement.  He also was agreeable with the idea of extending the CAP from the Wheldon protocol to the Stratton protocol if I decided I wanted to try that; however, he did suggest that unless I feel like I've plateaued and am not progressing, to not take that step.  I'm in agreement though my nature is to plunge ahead, full steam.  So I will continue with the Wheldon protocol and see how it progresses, perhaps for another six months.

Interestingly, when I was visiting with my doctor, he began telling me about several studies he's seen this year concerning vitamin D.  This studies concerned several researchers who looked at blood tests from American military people and followed them over time to look at the correlation between vitamin D and the risk of developing Multiple Sclerosis.  The study showed a linear relationship between levels of vitamin D and risk of developing MS.  He also mentioned another study done in Canada where the researcher concluded that 4000 IU of vitamin D daily was necessary for people living in northern latitudes.  I don't know the details of that study fully, but it was quite interesting to hear this information coming from a doctor.  He is very much out of the norm for doctors and I'm quite glad to have access to him

So I listened to him talking about these studies with an occasional smile on my face.  I had to tell him that I've been at or near 4000 IU of vitamin D daily since the fall of 2001.  He and I agreed that this is probably why my condition didn't continue to progress as it had been the year before I began taking it.  Whew!  Glad I put the breaks on it when I did.  Now with the CAP, my condition will hopefully continue to go in reverse.

But in any case, just thought I'd share a bit of good news. :-)

John

Nice to have corroboration, isn't it? Yet, had we not all started when we did, I wouldn't want to think where we'd be now. Onward, pioneers!

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

Mac           

You're absolutely right.  Had I not found out about vitamin D some six years ago, along with other supplements, I know that my condition wold have continued to deteriorate.  I would probably have been at least in a wheelchair, if not worse, within 2 years of diagnosis.  I was just going down that fast.

I remember just over a  year after the onset of my condition, less than a month since I was diagnosed, I was at a wedding.  It was the wedding of one of my sisters.  I remember it clearly.  I could barely manage to walk inside from the parking lot, it was torturous.

The wedding party and family took a picture after the wedding.  There was a set of bleachers set up on a stage so that the family could all get into the shot.  I simly lacked the stamina and balance to climb up onto the stage and bleachers, I had to stand in front of everyone at the bottom.  I just couldn't do it.

A year later after being on vitamin D and other supplements, I was much better and could have done it.  Now, years later, on the CAP, I would have no trouble at all, it would haven't have been a concern of any kind for me.

Now, that sounds a little misleading.  I sound like I'm at 100% of where I should be.  I'm not.  I'm more like 65 - 75% in my opinion.  There is still much to do, much to remit before returning to normal function.  But I'm in it for the long hall and will be here as long as it takes.

So yes, ride on pioneers, ride on.

all my best

John

RRMS/EDSS was 4.5, now 4.??? on Wheldon Protocol (nac, doxycycline, azithromycin, metronidazole) since 04/12/2006

best, John

RRMS/EDSS was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
nac 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazole 3x400mg/day then 3x500mg/day

You know, I really should get out of the habit of starting to read something wherever my eye falls, because it fell first on the sentence about you growing a spare liver. Image removed.    Apart from that, good news all round............Sarah    An Itinerary in Light and ShadowStratton/Wheldon 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.
Red

It is good news John.   Glad to hear it!

On Combined Antibiotic Protocol for Cpn in Rosacea since 01/06

Treatment for Rosacea

  • CAP:  01/06-07/07
  • High-Dose Vit D3, NAC:  07/07-11/08
  • Intermtnt CAP, HDose Vit D3:  11/08-01/09
  • HDose Vit D3, Mg, Zn: 01/09-

Pleased to hear that your backpain was muscular, it is easy to fear the worse, when the worse has happened to you so many times.   I was using muscles I have not used for a while and was in agony for two days, and it made me realise how painful life must be for people with fibromyalgia.

Its great to get some good news, it give you the encouragement to continue.

Michele (UK) GFA: Wheldon CAP1st May 2006 . 26th March 2007 continuous Flagyl at 400mg with 5 day pulses at 1200mg every three weeks. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006

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

wonderful news John, YEAH!

When I read about others being able to go to the gym, really work out like I used to be able to, I get a little sad.  I can hardly wait for the Cpn to leave my body so I can do more & build up my strength again.

Blessings.

With Christ in Faith

Ruth 

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

Ruth          

Don't be sad, be happy!  You are now working towards a day when you will be able to get back out there and have the strength you miss where before there was no avenue to pursue that possibility.  I may go to the gym on a regular basis, but I'm by no means performing close to my full potential.  I see people in the gym all the time who can do more than I can without a second though.  It's a path towards a destination I haven't reached yet.  One that I'm lucky to be on rather than the alternative, one that I'm glad to be sharing with so many other people, working towards the same goal.

all my best

John

RRMS/EDSS was 4.5, now 4.??? on Wheldon Protocol (nac, doxycycline, azithromycin, metronidazole) since 04/12/2006

best, John

RRMS/EDSS was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
nac 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazole 3x400mg/day then 3x500mg/day

Hi John, yes I am blessed to be here.  This is the best site!  It is a prayer answered for me.  Thank you for your reply

Blessings

With Christ in Faith

Ruth 

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

John- Great to hear that you were ahead of an already far-seeing doc. I've always admired your workouts too, as the CFS side of Cpn makes the energy cost difficult for us. I'm almost ready to get back to it...

CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 200 Doxycycline, 500mg MWF Azithromycin, 500mg Tini daily (Continuous protocol)

 

CAP for Cpn 11/04. Dx: 25+yrs CFS & FMS. Currently: 250 aithromycin mwf, doxycycline 100mg BID, restarted Tini pulses; Vit D2000 units, T4 & T3, 6mg Iodoral

Jim              

Yeah, with respect to vitamin D I was ahead of the game, but when I walked into his office for the first time a year ago, he was already aware of the research at Vanderbilt and had even spoken with someone who was involved there at the time.  He's a good doctor, in my opinion.  Open minded and realizes that medical health is still an evolving profession and I think he's focused on curing disease rather than treating it, unlike what seems to me to be the case with many physicians these days. 

all my best

John

RRMS/EDSS was 4.5, now 4.??? on Wheldon Protocol (nac, doxycycline, azithromycin, metronidazole) since 04/12/2006

best, John

RRMS/EDSS was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
nac 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazole 3x400mg/day then 3x500mg/day