Drat. No more excuses to be sedentary.

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

Raven, Interesting post, thanks.  I rode my bicycle this past weekend.  It was a bit covered with cobwebs and dust of the ages.  We have moved to a home that has a 700 ft driveway, a gentle slope away from the house and a rise on the return leg (there are 5280 ft in a mile). 

This second year of treatment has the added  Rx (prescription) of exercise per my MD for my post menopausal bone situation, for my elevated cortisol levels as well as for improving my sleep and general endurance.  My cardiologist has ordered exercise as well for heart health. Last September I held my tongue whe he suggested it, fatigue was too close to me at that point.  Considering CPni [2] feasting on much of my ATP (cellular energy) and Bb this would in no way have been possible prior to treating this past year with the Wheldon CAPi [4].  Thanks again to Dr. Stratton, Dr. Wheldon and for Jim who brought this community to the surface of the internet.  And thanks to Michele for the recent additions to the presentation of the basic information.

Has anyone else with CFSi [5] been able to get somewhat active again after the initial ramp up to full treatment on CAP?   Looking forward to comments on this post.

 Louise USA.CFS.CPn Positive.BbPositive.WheldonCAP6/24/07.NACi [8],Doxyi [11],Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi [12]. 

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Louise  CFSi [5], CPN+/Bb+,Wheldon CAPi [4] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [13] & Endotoxinsi [12] PRN, Doxyi [11] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

I can say, that generally I have been more active.  When I have better days I do a little bit of my dvd Yoga for the Rest of Us.  But, the weather changes every 10 minutes (slight exageration) have my sleep turned upside down & around like a gator killing prey.   Some nights I nap for 2 hrs & wake up & the cycle continues.  When this happens I crash.  so, to go on a consistent exercise regimen isn't possible at this time as my crash days I  barely have energy for a shower & a teeth brushing.

It has been particularly worse since I have arrived back home from AZ.  Now, this leaves me to wonder, is it the weather, is it our house or just one of those things.

I would love to get out & take some pictures with my new camera.  At the moment, when the weather is crappy & I have no energy, I am in.  On the days when it is nice, I have to use my energy to run errands.

All things in God's time, it will happen.  I fully expect furthe improvements in that department.

CFIDSi [14]/ME 32 yrs, FMSi [15], IBSi [16], EBVi [7], CMV, Cpni [2], chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [8] 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#11 1000 mg 5 days 6-14-08

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CFIDSi [14]/ME 32 yrs, FMSi [15], IBSi [16], EBVi [7], CMV, Cpni [2], chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#15 750 mg X 5 days 11-1-08

Raven, Thanks for posting this. Husband keeps pushing me to exercise, too. And, for the same reasons. But can't even stand or walk, due to the bilateral neuropathy and spasticity. No doubt caused by the IV ABXi [17] SP trigger. Neice is graduating from Bowling Green in Sports Medicine. Will have to ask her if she is familiar with Prof Keylock and this/his work. --Minai RRMSi [18], diagnosed 2/04. NACi [8] 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. GAD-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY. LDNi [9] 4/07. 1st Tinidazole Pulse, 8/11/07. Keflex 2/08. IV Rocephini [19] 3/08. IV Clindamycin 5/08. USA

Minai, What is IV abxi [17] SP trigger? What is SP? Secondary progressive?

[Doxyi [11], Azith, Biaxin and Flagyli [21]]  for rrmsi [18] since October '05.  Added Amoxicillini [22] 1gm twice daily and LDNi [9] 4.5mg qhs October '07; Added Inositol[1gm] and Calcium Pyruvate[4-6gm] daily February '08, EDSSi [23] was 6

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Wheldon Protocol for rrmsi [18] since Oct '05.  Added LDN 4.5mg qhs Oct '07.  All supp's.  Positive IGGi [24]'s for Lyme Disease,Babesia, & Erlichiosis Sept. 2008.  Currently:  Mepron 750mg bid and Azithromycin 250mg qd for Babesia.

I can't exercise. I used to be in excellent condition and enjoyed working with weights and had powerful legs. Now I am a lump; my husband often has to hold my hand just so I can walk around the yard in slow motion.

That is going to change. I recently bought a whole body vibration machine which has 10 minute exercise sessions, actual minutes are 12 with breaks built it, and I feel my body respond. The console shows me the pose and I hold it for 30 - 60 seconds while the machine vibrates. It's almost effortless.

I was so excited about this that I posted a blog entry about it the other day. I've ached steadily for years and I am feeling the benefits of really good workouts with out the workout, and without the post workout pain, ache or fatigue. I feel good and I feel muscle again. And, I've just begun. This is perfect for those that are weak, achey and generally immobile. It's not for everyone, but most could use it.

http://www.dkn-usa.com/benefits.aspx [25]

--
Corinna. GFAi [26]. NACx2400mg, D3x5000mg, B12x1000mcg.

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Corinna | GFAi [26]. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Corinna, I was pretty lumpy just one short year ago.  My comment is a bit of a progress report testimony to the possibilites for CFSers on CAPi [4].   I would love to try your machine out though.  Sounds interesting, I missed your previous post about it.

 Louise USA.CFS.CPn Positive.BbPositive.WheldonCAP6/24/07.NACi [8],Doxyi [11],Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi [12]. 

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Louise  CFSi [5], CPN+/Bb+,Wheldon CAPi [4] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [13] & Endotoxinsi [12] PRN, Doxyi [11] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

Kitkat2, SP = Secondary Porphyriai [27] SPMSi [28] = Secondary Progressive MS. There are many different porphyrias. Some of which are even hereditary. But secondary porphyria is what needs to referred to on this Cpni [2] site because it is specific to Cpn and Dr Stratton's patent. Sarah corrected me about this after I had become quite confused in reading about it just in general. Maybe we need a little "i" and definition for SP, too? --Minai

Louise, that is encouraging! I have great hopes for this treatment. I'm hoping the WBV (whole body vibration) machine will 'enhance' the healing process and I will be exactly my old self at the end of it. I'm totally ignoring that I am decades older then my old self though ;o)

Here's the link to my post:

http://www.cpnhelp.org/living_with_chronic_pain_ [29]

I'm going to be adding a bit on LLLT for pain once I can compose my thoughts in a logical fashion about it. LLLT is the only thing that stopped the pain of my trigeminal neuralgia, a condition I've had for over 20 years. It helps instantly with my arthritic joints, aching hips and the like. It's an FDA approved alternative to oral pain meds. Here's a link to one of the devices I use, their site includes lots of links.

http://warp-heals.com/ [30]

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Corinna. GFAi [26]. NACx2400mg, D3x5000mg, B12x1000mcg.

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Corinna | GFAi [26]. Wheldon Protocol: 4–8/08. Can't kill the yeast.

For those who suffer from fatigue and pain, warm water exercises would seem to be a gentle and beneficial alternative. And for those with some mobility, Qigong would be great. When I was a fatigued mess with days when I had to crawl into bed for most of the day, I bought a Qigong video. There was even a workout on it for someone who could just sit in a chair. I was able to do the slow movements even though my joints hurt and my energy was at the bottom. I did feel the benefit from it but it took the CAPi [4] to get to the real culprit. Qigong videos and DVDs are relatively cheap but going to a heated pool might be more difficult or expensive. I'm on the fence about the whole body vibration until I learn more about it. Raven CAP since 8-05 for Cpni [2] and Mycoplasma P. for Msi [6] and/or CFSi [5] Also EBVi [7] and HHV6

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Feeling 98% well and going for 100! Still testing + for Cpni [2] since June '08.CAPi [4] since 8-05 for Cpn and Mycoplasma P. for MSi [6] and/or CFSi [5]. Also EBVi [7] and HHV6 NACi [8], Iodoral, T3, BHRT, Methylcobalamin injections, Nitro patch, LDNi [9] and Methylation supplementsi [10]

I don't recall hearing about whole body vibration til recently when I came across this article on MSNBC Health: http://www.msnbc.msn.com/id/25127505/ [31]

Standing on a vibrating platform may sound like an odd way to pass the time, but a new research review suggests it may do the muscles and bones some good — particularly in older or sedentary adults.

...

In one study of 28 postmenopausal women, for example, researchers found that WBV appeared to increase bone density in the hip. The 8-month training regimen required the women to stand on a WBV platform, in a squat position, for six 1-minute cycles, 3 times per week.

Another small study of postmenopausal women found that over one year, WBV training seemed to inhibit bone loss in the spine and hip area.

It was enough to get my interest. I googled and read and then called around. It's popular in Europe but not so much in North America. I'm surprised how much I like it and feel uplifted in spirit, energy, alertness and all the other goodness that comes from vigorous exercise. You actually get a runner's high from the darn thing. I haven't come across a down side yet, well if I don't count having to move it around til I ended up putting in the one spot in my house with a concrete floor. The thing shakes the house.

--
Corinna. GFAi [26]. NACx2400mg, D3x5000mg, B12x1000mcg.

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Corinna | GFAi [26]. Wheldon Protocol: 4–8/08. Can't kill the yeast.

the vibration machine is great. It is very popular i Sweden. You are on the right track, keep it up but don`t overdo it. 

I can highly recommend Qigong. You can do it standing up, sitting and even lying down. It`s softer than ThaiChi and much more effective. B ut find a good teacher.

Good luck

Else 

the vibration machine is great. It is very popular i Sweden. You are on the right track, keep it up but don`t overdo it. 

I can highly recommend Qigong. You can do it standing up, sitting and even lying down. It`s softer than ThaiChi and much more effective. B ut find a good teacher.

Good luck

Else 

Else G. The other thing that I find more appealing to me about Qigong is that with Tai Chi, I used to be challenged with rememering the sequence of the Dance (this was many years ago, I took lesson after lesson, went to Tai Chi Camp and dah, CPni [2] active surely).  Qigong is a bit more of a series of static, yet changing postitions but not a continueing flowing dance-like routine and Qigong (Chi Kung) demands less standing balance from my point of view so it is more accessable to folks with those challenges. 

I looked for the vibration machine in my area.  There is a rehab facility but it is several hours away from my home.  So I am motivated to look at my old rebounder again.

Louise USA.CFSi [5].CPn Positive.BbPositive.WheldonCAP6/24/07.NACi [8],Doxyi [11],Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi [12]. 

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Louise  CFSi [5], CPN+/Bb+,Wheldon CAPi [4] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [13] & Endotoxinsi [12] PRN, Doxyi [11] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

Exercise worked very well for me.  At the time of my first M.S. exacerbation (at least the first one recognized as such), I was fully mobile, but was exhausted by walking from the house to the garage. 

When I read exercise could help keep M.S. patients out of a wheelchair, I immediately started.  A friend who works as a personal trainer sent me an exercise and diet plan.  The exercise plan involved weight lifting and walking. 

I started out with a pair of three pound dumbbells and walking 200 feet.  Simply lifting the dumbbells above my head thirty times (in sets of ten) would cause me to get a "pins and needles" sensation all over my body; the weight wasn't causing the muscles to hurt, they were putting stress on my whole metabolism and it was reacting.  A year and a half later and I can walk two miles (with pronounced left foot drop the whole way) and lift over 100 pounds.  I've also lost over 20 pounds.

I know my M.S. was diagnosed early (EDSSi [23] 2.0), that my results aren't typical and there's no doubt some sort of placebo effect going on (i.e. the belief that by exercising I'm "taking control" of the disease) but whatever the reason, my experience has been that moderate exercise has been very beneficial physically, mentally and emotionally.   

CAPi [4] for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi [32] (3 x week) ceased 3/2008, restarted 5/2008, 150 mg Roxi (2 x day) starting 3/2008, ended 5/2008. Ninth pulse metronidazolei [21] completed 6/7/2008.

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CAPi [4] for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi [32] (3 x week).  Fifteenth pulse metronidazolei [21] + INHi [33] completed 11/22/2008.

hdwhit, interesting what you say about exercise. I was diagnosed in 1997 and had some trouble for a year or so but was going through a yucky divorce at the time so the stress was absolutely a factor. After this period I was in a relationship with a gym buff and got working out. I was working out with a fairly fit man so I was doing a man's program. Over time, as I got stronger and stronger, I had more energy and the MSi [6] seemed to all but disappear for a long time. After I became single I continued to exercise and eventually became a trainer at the gym. I was a very strong woman with a very low percentage of body fat. Of course the diet was extremely controlled as well as vitamins and protein regulated. Here's my point, I moved away from my town and quit the trainer thing. The gym where I moved sucked so stopped working out over the next year. Over the next three years, I was in fairly good health but started to have trouble. Since 2004 I have had some major problems, hospitalization and treatment. I moved from RRMS to SPMSi [28] with more and more disablity. Part of me wishing I had stayed working out so vigorously. I do have the benefit of the underlying muscle of years of weight training but now have the weakness and damage of the MS. I have started the CAP of course and hope to get well. I have seen pretty good improvement already but  I know it will take time.

Exercise must release wonderful things into the blood that combats all kinds of things as well as making our immunei [34] system stronger to deal with other nasties. 

SPMS< Supplementsi [10] & NACi [8], Doxyi [11] 200 mg, Azith 250 mg 3X/wk

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SPMSi [28]< Supplementsi [10] & NACi [8], Doxyi [11] 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli [21] 1500 mg x 3 days once per month

Whoops, what I meant to say was "Qigong". That's what happens when I post after a crazy day of too much work. So maybe I need to go back and edit the post. Raven

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Feeling 98% well and going for 100! Still testing + for Cpni [2] since June '08.CAPi [4] since 8-05 for Cpn and Mycoplasma P. for MSi [6] and/or CFSi [5]. Also EBVi [7] and HHV6 NACi [8], Iodoral, T3, BHRT, Methylcobalamin injections, Nitro patch, LDNi [9] and Methylation supplementsi [10]

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Hey Sarah, I said Tai Chi instead of QiGong. Probably because I have both types of DVDs--I tried both of them. Here's a site that explains QiGong: http://tinyurl.com/6owhp4 [37] I find it much easier to work with a DVD than traveling to a class but some people do better with a class and a teacher. QiGong concentrates on improving the flow of the Chi or body energy around to benefit health. How's the painting coming? Raven

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Feeling 98% well and going for 100! Still testing + for Cpni [2] since June '08.CAPi [4] since 8-05 for Cpn and Mycoplasma P. for MSi [6] and/or CFSi [5]. Also EBVi [7] and HHV6 NACi [8], Iodoral, T3, BHRT, Methylcobalamin injections, Nitro patch, LDNi [9] and Methylation supplementsi [10]

Thanks for the update, sounds promising.  I will watch with interest as you are my test pilot, LOL

I am soggy & flabby like I have NEVER been in my entire life.  It makes me laugh, actually not at the time, but when the disability insurer hired gun MD, last year, said I just needed a 12 week regimen of physio & back to work,  I replied "if exercise was my problem, I would never have been sick in the first place"

I am soo restless these days, it has been over 2 years since I have had to step back from a professional career, a business, because of illness & bed to couch ridden.

I have come a long way, but there is more to be done.

Onward & UPward,

CFIDSi [14]/ME 32 yrs, FMSi [15], IBSi [16], EBVi [7], CMV, Cpni [2], chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [8] 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#11 1000 mg 5 days 6-14-08

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CFIDSi [14]/ME 32 yrs, FMSi [15], IBSi [16], EBVi [7], CMV, Cpni [2], chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#15 750 mg X 5 days 11-1-08

Qigong videos that I have know and loved.

My favorite Qigong programs are the Chi-lel Qigong DVDs, VHS and Books.    101 Miracles of Natural Healing by Master Luke Chang and Body & Mind Method which is the  second in the series.  Then it is followed by Advinace Level 1 Chi-Lel Qigong again with Master Luke Chan and the Dance Like a Butterfly with Master Luke Chan.  Luke and his brother teach intensives and have a website  http://www.chilel.com/ [38]

Others that I own are the Soaring Crane Qigong: The Five routines by Zhoa Jin Ziang narrated by Marueen Goss and of course there is Qi Healing: How to be a healer, Volume One by Ken Cohen and volume two Qi Healing: Restoring Balance by Ken Cohen. 

These DVD, VHS and books are all old enough to be found used on Amazon.com or Ebay used at a good price, and of course there are many more.

Louise USA.CFSi [5].CPn Positive.BbPositive.WheldonCAP6/24/07.NAC,Doxyi [11],Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi [12]. 

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Louise  CFSi [5], CPN+/Bb+,Wheldon CAPi [4] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [13] & Endotoxinsi [12] PRN, Doxyi [11] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

You said you had started the CAPi [4] but not whether you had restarted an exercise program.  I hope you have.  If not, I would urge you to.  I can't pretend to understand the limitations you have with SPMSi [28], but I've got to believe you remember how good it made you feel and how much good it did.  

CAP for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi [32] (3 x week) ceased 3/2008, restarted 5/2008, 150 mg Roxi (2 x day) starting 3/2008, ended 5/2008. Ninth pulse metronidazolei [21] completed 6/7/2008.

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CAPi [4] for M.S. since 8/2007. Currently: 100 mg Dox. (2 x day), 250 mg Zithi [32] (3 x week).  Fifteenth pulse metronidazolei [21] + INHi [33] completed 11/22/2008.

HD, I am wondering if your response is to Todybear's post?  This is a rambling topic.

Louise USA.CFSi [5].CPn Positive.BbPositive.WheldonCAP6/24/07.NACi [8],Doxyi [11],Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi [12]. 

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Louise  CFSi [5], CPN+/Bb+,Wheldon CAPi [4] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [13] & Endotoxinsi [12] PRN, Doxyi [11] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

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Excercise made a difference in me, no doubt.  Before December 07, I was going to the gym between 10 and 12 hours each week.  I would get on the elliptical trainer and do various weight lifting machines, and some free weights. 

In November, I tore the rotator cuff in my right shoulder and went through physical therapy into March 08.  I haven't returned to the gym yet as I've been enjoying having time to do other things; however, it is something I am regularly thinking about doing.

Since I put the gym on hold in December, I have noticed symptoms and inflammationi [1] MUCH more so then before, when I went to the gym.  It's like night and day.  I had a much easier time when I went to the gym regularly, just no free time for anything else.  I have tried to excercise at home but it's not the same.  Getting back to the gym is something I have to do.

all my best

John

RRMSi [18]/EDSSi [23] was 4.5, was 4.???, now 5 on Wheldon Protocol (naci [8], doxycycline, azithromycin, metronidazolei [21]) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007. Added INHi [33] 300mg/daily on 03/17/2008 Stop

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all my best

John

RRMSi [18]/EDSSi [23] was 4.5, 5, now 6 on Wheldon Protocol (naci [8], doxycycline, azithromycin, metronidazolei [21]) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi [33] 300mg/daily 03/17/2008 stopped 05/08