Who out there is functional? (Non-Ms'ers)

For the benefit of perspective......I am curious.  We get varied responses on physical reactions to pulses, ABXi, etc.; BUT,  in the big picture, how many of you ( on a day-to-day basis), are still functioning below normal.... or non-functional?   How many are unable to work, drive, take care of the home, cook, etc.?

Some of you speak of your pulses taking you down, but yet have the physical capabilities of going to the gym, carrying out day-to-day activities and working.  (Which, by the way, is fantastic)  This query is in no way meant as an offense to anyone.  

 Since I am unable to do a poll, is anyone willing to share?

 

How long on CAP:

Working:

Driving:

Physical levels of endurance: 

 

 

 

 

Hi

I am not yet pulsing and am still using NACi and it is giving me some benefit

I am able to do intense yoga a couple times a week  and on good days I can do some swimming or walking (but not always) in addition to working four days a week(sedentary work)

I have been on a methylation protocol for two years and I think that has knocked down some of my infections 

If I overdo work or exercise it in the slightest I am usually down for several days 

I drive for a living and can drive quite a bit without fatigue as long as I take breaks but after about eight hours I am ready to quit

If I overdo my imuune boosting drink (oleander soup) I am also down (It causes night sweats and I can't sleep) or if I use to much B12 

I go down easily and come back slowly but I am better than two years ago and I am very thankful for that

Since I have to work and life is somewhat meaningless if I can't do my yoga and exercise I have to balance my need to recover with my need to stay functional ... and that is very hard because when I feel good I can sometimes forget to pace myself I need to stay at 60%

 

 

 

DAILY:  NACi 2400MG , DHEAi sublingual , vit D3 , multi vits,./ Three times  a week: B12 injections (Hydroxycobalamin). Deer antler./  Once every few months methyl B12 Methyl injections

Well, I'm 'probable' msi, according to one newbie doctor, and not at all ms, according to a very big, influential ms specialist, so I'll answer anyway.

Totally functional, in all the ways that count. Driving is fine - manual shift, clutch and all.   Memory is great.  Most abilities came back within eighteen months, though I still felt improvement in coordination and memory up to four years into treatment.

On a very stressful day, or when I'm extremely physically taxed, I find my feet might buzz a little again, or my walking becomes just a bit 'off' and I catch myself from tripping here and there. Mental clarity remains the same, though, even under stress.

Pulses never knocked me out, just made me a little more tired and (in the beginning two years, at least) irritable.

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

Jeannroz~

I am not currently on any antibioticsi (but that might change at my next appt).  My latest update can be found here:  

http://hhv6foundation.proboards.com/index.cgi?board=antiviral&action=dis...<

Basically, October was my best month in 7 years, and November started out looking like it would easily beat October, until I fell apart on the 16th.  And it looks like that falling apart was from HSV1 reactivating.  (Antibody levels as high as the lab measures at >=6.0)   I still have antibody titers as high as the lab measures to Cpni for both IgGi and IgA antibodies (IgG >=1:1024 and IgA >=1:256).  Even in my falling apart, I can still drive, and go to the store (except on one day where it was hard to get out of bed)....but I feel much less well.   I was perhaps doing a bit too many fun things (like snorkeling) which likely contributed to my falling apart.  But, hey, I felt good enough to try it, and I wanted to have some fun, so I did.  At this point, I regret not taking it easier, for the last couple of weeks have been fairly miserable.

MacKintosh~   so interesting to read of your buzzing feet!!!!!!   I got that symptom (specifically in my feet and lower legs) recently.  I had been vibrating in other parts of my body before, but not for a long time....then recently this started up.  Well, it would be nice to knock it down.  

I've got a few ideas to share with my doctors, and we'll see what they have to say.  It is clear that I'm battling viruses too, and that my immunei system can't seem to keep them latent once we beat them back to that state, so we'll see what our next game plan will be.  I see my doctors in early December, so it should be interesting!

Best to all,

Timaca

on valtrex 500 mg tid

http://whispersfromthefather.me/<

 

 

 

CAPi (in different abxi combos) since 06'. Now intermittent abxi since beginning of 2010. Work: Full Time now. Driving: No problems. Physical Levels of Endurance: Now in the gym 4x week. No post exertional fatigue. Occasional word retrieval problems but no brain fog. Mind is sharp. Remaining symptoms: Gas with sweets (not yeast, seems to be small intestine bacterial overgrowth), occasional pain under arms, in neck glands. Heart flutters related to digestion, vagal nerve disturbance. Feel 85-90% well. Able to drink alcohol, function under stress, etc...
CAPi since 11/06 for Cpni, Lyme, Bartonella, Babesia, Myco P, CMV, HHV-6 infectionsi. Rifampin 600mg daily, Zithromax 500mg daily. NACi 2250mg daily. All other supplementsi. Now Bicillin LA 2.4 mil injection weekly.

Hi ,

I'm a very long way from being able to do any of the activities I used to enjoy including working creatively for a living, staying superfit & healthy, helping family & friends, socialising.

After being up to max 15% of original energy i.e. before Lyme, Cpni etc. since August, as soon as the temperature dropped below 60F I was going downhill fast & having mishaps due to brain fog.

Four days ago, in desperation I increased LDNi [low dose naltrexone] from 6mg  up to 10mg x 2. All the rest of meds & supps remain the same.

Within 2 hours of first dose of 10mg naltrexone I was able to do about 6 hrs gentle activity, with frequent rests, & have continued at the same level each day.

It would be great if I can build on this & begin to live a more normal life.

Clare

 

 

I am no longer so extremely fatigued at the end of a work week ( I was so bad I could barely hold my head up at dinner after work). I really hated feeling that way. I have enough energy to do a fast walk on the treadmill for 30 minutes (3 speed setting and 4.0 incline) It's a mile and a half. Then I can do a 1/2 hour of ashtanga Yoga with ease. There was a time I had to sit down and rest in between cooking dinner. I am strong overall but still have die off symptoms after pulsing.

I was never given a firm diagnosis of MS as my MRI never showed the multiple spots--I only had one area of inflammationi. They thought it was a mini stroke. It was Cpni. My visual evoked potentials test was negative as was the spinal tap. Yet something was attacking my muscles and nerves. So if Cpn causes MS, then I was on my way to it. But the autoimmune model just doesn't fit.

It doesn't matter to me anyway. Getting to the roots of the problem is what this is all about. And what I found with myself is that it is a multi dysfunction problem. Many things need to be addressed in order to get well. Hormones, thyroid, imune system, adrenals, food allergies---and I finally feel like I'm getting it all together.

So it has been 5 yrs. And I have recovered energy, strength, a clear focused mind, better sleep. Gotten rid of joint inflammation, swelling in right forearm (it was so painful I would wrap it up in ACE bandages with China Gel), headaches and brain fog.

About 95% better at this point in time. Thank you Dr. Stratton and team!!!

Raven

Feeling 98% well-going for 100. Very low test for Cpni. CAPi since 8-05 for Cpn/Mycoplasma P.,Lyme, Bartonella, Mold exposure,NACi,BHRT, MethyB12 FIRi Sauna. 1-18-11 begin new treatment plan with naturopath

Hi I am new to all of this. How or what kind of test did you have to find out the bacteria you had....you said you were tested for CPNi did you hve to go to Vanderbilt for this or did you get your local doc to do. I am trying to find help for my dtr who has MSi and is very ill and her health and life are failing right in front of my eyes. Would Dr. Stratton speak with me....would he know any other docs using the Wheldon protocol? We live outside of Washington, DC. thanks so much, Leah Butterfield

Hi Leah~

I get tested at Focus Diagnostics Lab in CA.   This is the test that is run on me:  

http://www.focusdx.com/focus/1-reference_laboratory/search_frame.asp?sea...<

Focus is owned by Quest lab.  Your doctor would need to specify that the test goes to Focus lab, and then you would have to talk with your local Quest lab to make sure that they can send it there.

Perhaps other people use other labs and they can give you some feedback.

Best, Timaca

on valtrex 500 mg tid

http://whispersfromthefather.me/<

 

 

 

It's great to see peoples lives improving from the protocolsi their on

it gives me hope 

 

DAILY:  NACi 2400MG , DHEAi sublingual , vit D3 , multi vits,./ Three times  a week: B12 injections (Hydroxycobalamin). Deer antler./  Once every few months methyl B12 Methyl injections

Hi Jeanne,

I spent better than 15 years off and on this for CFIDSi, COPD, and some other problems but made almost all of my progress in the last 2 years (started in Nov of '08) with a combination of antibiotic and lowering intracellulari pH in a variety of ways. I am working and that limits my progress but most weeks I can find a day to give up to recover. I would assess my physical and mental state as better than at any time in my life but still think/hope I can make some modest additional progress.

Here is a photo from a few months ago but I have made considerable progress since then...

It feels good to feel good... ;)

- Paul

Hi Paul

Cool picture 

You said you have been lowering your intracellulari PH in a number of ways 

Can you elaborate on that?

Thanks 

And glad you're feeling good 

 

DAILY:  NACi 2400MG , DHEAi sublingual , vit D3 , multi vits,./ Three times  a week: B12 injections (Hydroxycobalamin). Deer antler./  Once every few months methyl B12 Methyl injections

Great to hear from some of the older members (Mycoplasma1, you've come a long way!)  and it is wonderful some are leading normal lives.... 

If I may repose my question again:

  "BUT,  in the big picture, how many of you ( on a day-to-day basis), are still functioning below normal.... or non-functional?   How many are unable to work, drive ........?"

So I guess, I'll start with myself.     For me, I am still a long way from being able to work, have physical endurance, clean my home like a normal person, set the alarm,wake up and plan my day and know that I am able to accomplish what I plan. 

Nothing is static. I can last maybe 3 minutes on an exercise bicycle, but can now walk in a mall shopping for about an hour without having to use the electric carts or wheelchair. I may have a good day and the next I'm down most of it.  This isn't about "pulling myself up by the bootstraps" and enduring... It's just not possible.  I am functional, just not where I thought I'd be.  Nothing is consistent, there is no way I could hold down a job.  Driving?  Only short distances, I am unable to endure long distances, the stress of freeways or high traffic areas.

This summer was the first we've been on vacation, but I wasn't able to do much of anything other than sit in the Condo.. thankfully my husband went mountain biking and the views in West Virginia were beautiful.   The highlight was meeting a dear friend who is a fellow comrade on this site Kiss

I did have a good week in October and danced (yes, danced -- I hadn't done THAT in 4 years!!! ) at my SIL's wedding.. only to shutdown the following week. 

I believe that I AM on the upside of recovery but my immunei system needs major rebuilding, my physical endurance as well (I was in bed most of my first  year on this protocol).  The aftermath of clearing this from my body obviously has taken it's toll.  I am still having unexpected physical shutdowns (such as this last sinus/respiratory issue) that come from nowhere. 

I thought I would be off ABXi and on my merry way by now, but obviously the CPNi (or whatever else I'm harboring)  has other plans.  I am thankful for the progress I have made...... but wonder if/when I will ever be normal again.  I have been able to do more in the last six months than I have in the 3+ years on the protocol.... it's coming just very slowly....

Anyone else???

JeanneRoz 

 

 

     

 

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Hi Homina,

I need to update some of this but here is a thread from a few weeks ago.

Cpn Theory: Effect of pH on Cpn<

- Paul

>"BUT,  in the big picture, how many of you ( on a day-to-day basis), are still functioning below normal.... >or non-functional?   How many are unable to work, drive ........?"

My life has been completely destroyed by Cpni. I'm unable to do anything. Unable to treat. Even simple thinking requires great effort.

Hunter: Don't think - experiment

Hello Garcia,  I've often wondered how you were doing and I do thank you for coming forward.   I'm sure there are others who haven't progressed as they thought they would (but are still plodding away).

Do you believe your problems were because of your adrenals?  [My recovery (or slowness thereof) IMOi has been more difficult due to  not having a thyroid and my adrenals got totally wiped out. ]

JeanneRoz

 

JeanneRoz ~ DXi'd w/ CPNi 4/2007; 6/07 -"officially" dx'd w/CFIDSi/FM; also: HHV6, EBVi, IBSi-C, 100 Doxyi:BIDi<; 500 mg Biaxin BIDi; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

Hi Jeanne. Yes I believe my HPA-axis is the major issue here. CAPi wiped out what little stress tolerance I had. I remember my first flagyli pulse took me 6 weeks to recover from, I lost a tonne of weight and my stress-tolerance was never the same again.

I believe that "CAP" is designed for healthy people. It is not designed for people with moderate->severe ME who are lacking stress-tolerance and a functional immunei system (check out the recent work on XMRV).

A similar situation occurs in Lyme where mildly ill people recover using antibioticsi, but sicker people do not.

As they said in an episode of "House" once, antibiotics need a functional immune system with which to work. I would add a functional hormonal system as a requirement too.

Hunter: Don't think - experiment

"antibioticsi need a functional immunei system with which to work"

I do not know. When I started capi, my immune system was totally ruined and it was proved by immunological tests. I had deficits in all areas of IS and some of the markers were so low, they even were not measurable. Doctors tried many immunomodulants on me with no success. So they finally assured me it was genetical defect. I was tested regularly at immunology during cap and suddenly after 1 year and three months they measured very low values. They said it had to be laboratory mistake. So repeated tests and it was there again. Next three years my markers were very very slowly improving to the point, that after 3,5 years of cap most values were back within normal range. I still had some slight deficit- mainly in activated T lymphocytes one year ago. And I am going to be tested this month again. So, if I get to the point of having completely normal IS, I will congratulate myself, that I did not stop cap earlier, though going through it was real hell.

Stratton/Wheldon protocol 02/2006 - 10/11 for CFSi and many problems 30 years

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