MediTest
27 Apr 2018
Author
katman
Title

Questionaire for MS patients.

Body

This is a questionaire for all patients with MS on this site who have been on an abx protocol for a length of time that has given them noticeable improvement and those who did and saw no improvement.  It is the beginning of the results of a request by my prescribing doctor to gather information about those of us who have undertaken this treatment.  We will be anonymous as we are here and all who wish to participate are enthusiastically urged to do so.  Any suggestions on how to make this better in any way are welcome.  (I am out of my depth here)1.   _____year old M__  F__2.

Comments

Rica, I'll post this here to encourage people to respond, but I'll send you the data separately to make it easier for you to collate......Sarah

1.   48 year old female

2.   Age when symptoms finally got your attention 40, but first symptoms at 24.

3.   Age at diagnosis: 45

4.   How many months have you been on abx? 1 year full time, but now have had two years of intermittent treatment, two weeks every two calendar months.

5.   On a self-assigned number and/or the EDSS  scale, how disabled did you become?      (0 through 10, 0 being normal, 10 being dead)  Can't be too serious - hope nobody is beyond 9!  Rica, really!

6.   On the same scale, how disabled are you at the present time?  Now 2.  My worst symptom was a complete inability to use my right arm, which to a right handed artist is bad.  I was always able to walk in a manner of speaking, but only a few yards at my worst. Now my worst symptom is only being able to walk about 4km whereas previously I could do about 40km when on vacation.

7.    Are you diligent about taking the supplements? Yes, but now I take them in reduced amounts.

-    A slight interjection here: I never tested diagnostically positive for CPn, but was treated empirically because I looked toxic.

9.   Blood pressure. if known, at beginning and now. My blood pressure has always been on the low side, between 115/70 and 95/57, depending what I have been doing.  (I don't make a habit of measuring it, but just did it one day several times, out of interest.)

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.

 Sarah, thank you!  How did you do that?  I expected someone to come along and say something like "You ninny, here is how you fill in the blanks".

Rica        EDSS 6.7 at beginning - now 2
Ignorance is voluntary bad luck.  Lauritz S.   A true Viking
If you come to a fork in the road, take it. Yogi Berra

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

Will respond via private message.  I like the format - simple and easily quantified.

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

How did I do that?  Magic, of course!  I actually have sent you a private message, but just posted this to draw people's attention to your project..........SarahImage removed.

 

Started the Wheldon regime in August 2003, due to very aggressive SPMS.  Moved to intermittent therapy after one year.  In May 2006 still take this, two weeks every two months.  EDSS was about 7, now less than 2.

An Itinerary in Light and Shadow  Berger.

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.

My turn.

1. 46 year old male-to-female transsexual - had a bilateral inguinal orchidectomy at age 36

2. Age when symptoms finally got your attention? 34

3. Age at diagnosis: 39

4. How many months have you been on abxii? On the full regimen for 11 months so far

5. On a self-assigned number and/or the EDSS scale, how disabled did you become? (0 through 10, 0 being normal, 10 being dead) About 9. Seriously. I was having trouble breathing.

5.5 Elaborate briefly, if you choose, such as listing your worst 3 symptoms, then and now:
Aug 2005: Both legs and right arm uncontrollable, left arm 95% uncontrollable, massive brain fog, bladder uncontrolable, actively suicidal.
Aug 2006: Some control of both legs, able to un-clench right fist, typing 1-handed (left - I was right-handed) at about 6-8 WPM, brain fog patchy, still depressed but only actively suicidal once or twice a month.

6. On the same scale, how disabled are you at the present time? About 7.5 to 7.9

7. Are you diligent about taking the supplements? Yes, of course.

8. If you had no improvement, what was the reason, if known? I used to need IV Solumedrol every 3 months, just to slow down the progression. Now, no relapses in 14 months.

9. Blood pressure. if known, at beginning and now. Was 160/95, now 140/78

Aggressive SPMS, EDSS 9, on CAP since 2005. Doxy 100mg 2x/day, Azithro 250mg MWF, NAC 2400mg/day, Metro 1250mg/day 5 days on, 10 days off, charcoal 1250mg/day during Metro pulses.

Willow,

You have made a truly remarkable amount of progress.  I understand perfectly about the "massive brain-fog"  Mine is gone now with only a wisp now and then.  If you have come this far, I know that you can do this. 

Rica        EDSS 6.7 at beginning - now 2
Ignorance is voluntary bad luck.  Lauritz S.   A true Viking
If you come to a fork in the road, take it. Yogi Berra

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

 

1. 36 year old male 

2. Age when symptoms finally got your attention: 22

3. Age at dıagnosıs: 23

4. How many months have you been on abx: 27 months

5. On a self-assigned number and/or the EDSS scale, how disabled did you become? : 8.5 - 9

6. On the same scale, how disabled are you at the present time?: 8 - 8.5

7. Are you diligent about taking the supplements?: Yes

8. If you had no improvement, what was the reason, if known?: My spınal cord ıs not cleared from cpn yet.

9. Blood pressure. if known, at beginning and now: My bp ıs lower than before.

 

On CAP's protocol for Cpn in PPMS since June 2004

Currently:  Doxy/Roxi, Flagyl pulses 

On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)

 Guner

I remember from the dim past that your change in sleep patterns was fairly dramatic, don't I?  Maybe you could elaborate. 

Rica        EDSS 6.7 at beginning - now 2
Ignorance is voluntary bad luck.  Lauritz S.   A true Viking
If you come to a fork in the road, take it. Yogi Berra

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

1.   48 year old  F .

2.   Age when symptoms finally got your attention: 30.

3.   Age at diagnosis 45 .

4.   How many months have you been/were you on abx? 13. I stopped in April 2006, since that I do the antibiotics pulses every 2 months for 2 weeks.

5.   On a self-assigned number and/or the EDSS   scale, how disabled did you become? 5   

6.   On the same scale, how disabled are you at the present time?   0.   I was zero on the EDSS before starting the antibiotics. The antibiotics brought my memory back.

7.    Are you diligent about taking the supplements?  No. I take literary everything recommended at best twice a week. Before the antibiotics I took supplements daily and was on the MS-Direct diet.

8.    If you had no improvement, what was the reason, if known?   (e.g. - "forgot" often, did not take supplements, do not have cpn)
9.   Blood pressure, if known, at beginning and now.   Always normal.

 

Cured of multiple sclerosis, stopped the Wheldon's protocol in Nov,2008. Use only LDN.

 At first reading, I missed the implication of your EDSS scores.  If I read it correctly, you went from 0 to 5 AFTER you began abx. 

Rica        EDSS 6.7 at beginning - now 2
Ignorance is voluntary bad luck.  Lauritz S.   A true Viking
If you come to a fork in the road, take it. Yogi Berra

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

Thank you all who have taken the trouble to do this.  I know it  takes a large portion of the day's energy for some of us, though probably that is not true for those who responded - they have more energy than they did in the past.   Our goal is at least 10 patients and we are at about 8, so please don't be shy.  PM me if that would help.

Rica        EDSS 6.7 at beginning - now 2
Ignorance is voluntary bad luck.  Lauritz S.   A true Viking
If you come to a fork in the road, take it. Yogi Berra

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

Questionnaire response...          

1.   37 y.o. Male

2.   31

3.   32

4.   In my 5th month now

5.   4.5

6.   4.5 (although there are changes).  Three worst symptoms?  That's a tough question, how to you decide which is the worst?  Prostate/Urinary/Bladder dysfunction, balance and endurance (walking), loss of tactile sensation (sense of touch)

7.    Yes, VERY diligent about taking supplements as was taking them prior to learning of Cpn and the CAP (with one or two exceptions)

8.    I have had improvement though subtle so far.  I did have an afternoon and evening last week where I was feeling amazing, almost like I did prior to MS.  It was only that day and hasn't yet happened again.

9.   My bp has been steady, usually around 111 / 70 or thereabouts both before and after beginning the CAP.  This is probably due to being physically active and excercising daily both before starting and now, while doing the CAP.

I'm not sure I'm the best subject for this study / questionnaire as I do a lot of things most people don't (excercise and was on supplements beforehand), but I hope it helps in some way. 

all my best

John

RRMS/EDSS 4.5 on Wheldon Protocol (doxycycline, azithromycin, metronidazole) since 04/12/2006

best, JohnRRMS/EDSS was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006nac 4x600 mg/daydoxycycline 2x100mg/dayazithromycin 3x250mg/day MWFmetronidazole 3x400mg/day then 3x500mg/day

 John,

You say that you notice changes.  Are these positive or negative?  Would it be possible for you to edit your post to reflect which way they go? 

Rica        EDSS 6.7 at beginning - now 2
Ignorance is voluntary bad luck.  Lauritz S.   A true Viking
If you come to a fork in the road, take it. Yogi Berra

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

Rica                  

I will try to edit my post to include indication of positive changes.  The changes so far are subtle, but they are there and measurable.  There was one thing that wasn't measurable as it didn't last, but I had a period one evening last week where I felt substantially unsick, normal.  I couldn't believe it.  I had all the energy, all the stamina, everything that I lost.  It only lasted a few hours.  I haven't felt like that in years.  I'm eager to get it back again and keep it!

I'll edit my original post above... 

...actually, I just went to edit that post and cannot edit it.  The option to edit doesn't appear at the bottom of the post, apparently due to the fact that there have been responses to it already?  Probably wise as people could be unscrupulous and change earlier comments, making subsequent remarks sound foolish.

So, in answer to your question, positive changes, though subtle.  The more significant one is an increased ability to drain myself fully.  I was testing around 200 ml left in my bladder, despite trying significantly for two years to get that number down, but was unable to do so.  I had gotten it to come down to that level from over 400 after starting Flomax over 2 years ago.  I had been at 200 for well over a  year.

Two months after beginning the protocol I had an appointment with my urologist and had it checked again, as is their policy.  I was at 40 ml, which is normal for an adult male.  I went from 200 ml six months ago to 40 ml.  I had noticed a change in my ability to relieve myself about 2 months into the protocol, maybe the second week of June.  It just became easier.

Next, I seem to tolerate heat more than I remember in the past.  I have been outside off an on the last couple of weeks and at times where temperature were in the high 80s or low 90s F.  I felt fine and didn't feel overly hot.  I have not been able to tolerate it in the past.  Granted, I still didn't stay outside any longer than I had to for fear of exposure changing my circumstances, but I remember it bothering me much more than it has.

Next, porphyria has abated somewhat.  I still get it after eating but not as heavily as I was getting it.  I have at times nearly eliminated it through the use of glucose by eating Sweet Tarts a half hour before having food. 

Other things I've noticed are that I hear better.  I also seem to sleep more soundly through the night and wake up less often.

all my best

John

RRMS/EDSS 4.5 on Wheldon Protocol (doxycycline, azithromycin, metronidazole) since 04/12/2006

best, JohnRRMS/EDSS was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006nac 4x600 mg/daydoxycycline 2x100mg/dayazithromycin 3x250mg/day MWFmetronidazole 3x400mg/day then 3x500mg/day

1.   46 year old female

2.   Age when symptoms finally got your attention: 23

3.   Age at diagnosis: 41

4.   How many months have you been/were you on abx? 10

5.   On a self-assigned number and/or the EDSS   scale, how disabled did you become? ~ 6.5

6.   On the same scale, how disabled are you at the present time? ~5.5  Elaborate briefly, if you choose, such as listing  your worst 3 symptoms, then and now: 
**Aug. '05 extreme spasticity, early signs of inability to drive car, spastic, purposeful gait, often needing human help.

**Aug '06 Never have problems with driving, gait much less spastic, however still require human help with ambulation when ill.

7.    Are you diligent about taking the supplements? Fairly diligent

8.    If you had no improvement, what was the reason, if known?  I have improved somewhat

9.   Blood pressure, if known, at beginning and now.  Last year: ~130/80, Now: 100/70

--Rica, thanks for doing this!!

kk2  :)

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

 Eric

Why did you delete that good suggestion?  When I wrote that I was thinking that some people did not have an assigned score (not necessarily a badge - mine was give very grudgingly)  but had decided that most people have a pretty good view of their disabilities and are probably pretty close to the EDSS, which takes no notice of our fog.  Since nobody has come back from there before, we are going to have to invent our own!

Rica        EDSS 6.7 at beginning - now 2
Ignorance is voluntary bad luck.  Lauritz S.   A true Viking
If you come to a fork in the road, take it. Yogi Berra

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

1.  51 year old  F

2.   Age when symptoms finally got your attention 50, if relavent.

3.   Age at diagnosis.50  Diagnosed 'probable MSi, with two small bright spots on brain on MRI

4.   How many months have you been/were you on abx? 11

5.   On a self-assigned number and/or the EDSS   scale, how disabled did you become? 1.5      (0 through 10, 0 being normal, 10 being dead)  Can't be too serious - hope nobody is beyond 9!

6.   On the same scale, how disabled are you at the present time?  ZERO.  WORST (in the distant past, thank you very much!) SYMPTOMS: waning ability to hold my head up straight,  optic neuritis causing loss of 60% of the vision in my left eye for two months, foot dragging with spongy feet, then tingling toes, numb fingers, difficulty swallowing, mental fog and exhaustion on minimal exertion.

7.    Are you diligent about taking the supplementsiiii?  ABSOLUTELY, YES.

8.    If you had no improvement, what was the reason, if known?   (e.g. - "forgot" often, did not take supplements, do not have cpn)
       I'VE HAD NEAR-TOTAL IMPROVEMENT.

9.   Blood pressure, if known, at beginning and now.  Normally 108 over 70, spiked to 130 over 80 at time of diagnosis.  Unsure what it is now, but no more heart palpitations or racing heartbeat!

AND I CAN AGAIN STAND ON ONE FOOT WITH MY EYES CLOSED!  (Amazing what makes us happy, isn't it?)

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

1.   35 year old Female

2.   Age when symptoms finally got your attention; at 31 years I noticed difficulties swallowing and strange loss of motor function in right arm.

3.   Age at diagnosis. 33

4.   How many months have you been/were you on abx? Have been on the CAP for 16 months and was on minocycline alone 2 months before then.

5.   On a self-assigned number and/or the EDSS   scale, how disabled did you become? ___      (0 through 10, 0 being normal, 10 being dead) . At worst my walking last year was about 5 meters.  I was given an EDSS of 4 around December 2004.  My walking at worst this year has been about 500 meters.

6.   On the same scale, how disabled are you at the present time?  My EDSS I think is more like about 2.  On average I manage 800 meters.  At worst (in high humid temperatures and hungover)  500 meters.  I used to have terrible spasms requiring a LOT of zanaflex/alcohol to get through, my spasms disappeared earlier in the year but have reappeared very mildly.  The burning pain in my left foot which troubled me greatly during 2004 and 2005 has now gone.

7.    Are you diligent about taking the supplementsi? No!  Oops.  I do try to take the Vit D, inosine and Vit b complex but am not diligent.

8.    If you had no improvement, what was the reason, if known?   (e.g. - "forgot" often, did not take supplements, do not have cpn)

9.   Blood pressure, if known, at beginning and now.  Ooh – haven’t checked this one out.  My red blood cell volume has gone from macrocytic to normal if that’s of any interest.

 Thank you, Alex,

That makes 10, but I am still hoping NotDoneYet (Colin) will come in, and any others who want to contribute.   You and he are such strong markers - just look at what you have done, even with minimal attention to the supplements! 

Rica        EDSS 6.7 at beginning - now 2
Ignorance is voluntary bad luck.  Lauritz S.   A true Viking
If you come to a fork in the road, take it. Yogi Berra

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

Rica,

I am so new I almost did not do survey but have noticed some changes and think information may be useful. Thank-you for taking on this task. 

1.   41 year old female

2.   Age when symptoms finally got your attention 31, but first symptoms at 29.

3.   Age at diagnosis: 31

4.   How many months have you been on abxii? 4 1/2 months, will start flagyl next month.

5.   On a self-assigned number and/or the EDSS  scale, how disabled did you become?  +, 0 being normal, 10 being dead)  

6.   On the same scale, how disabled are you at the present time?  Same 7+ .  My worst symptom is walking, balance - use walker all the time and scooter for distance.  Spastic muscles, bladder issues.

7.    Are you diligent about taking the supplementsii? Yes.

8.  I have already had small improvemnts but they do not stay come and go - small motor skills, buttoning, tying, less spastic muscles.  Brain fog lifts more often and my energy is much better all the time. 

9.   Blood pressure. if known, at beginning and now. My blood pressure has always been on the low side, but I do not know my numbers, but will start tracking as my dr. takes it monthly.

On Wheldon protocol for MS since April, 2006.  doxy 200 mgs daily, zithromax 250 mgs 3x/ week , 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.

 Thank you for doing this, Wiggy

You and John (farandwide) are both at the beginning of this, though (as do we all) have different disabilities.  I am pleased that you both did and and I will include both in the collation.  So far, it has been as they have been listed but maybe I should divide them into categories.  Any ideas, anyone? 

Rica        EDSS 6.7 at beginning - now 2
Ignorance is voluntary bad luck.  Lauritz S.   A true Viking
If you come to a fork in the road, take it. Yogi Berra

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

Yes ı had sleepıng problems ın the fırst year Rıca, also ı used to wake up ın the mıddle of the nıght. I had spasms, paın and fever combination to provoke thıs problem. They kept me awake for so many uncomfortable nıghts, but ıt all lessened by tıme. My sleep ıs great now, ı sleep 10 hours a day sınce the 15th. month of CAP. I guess everyone ıs dıfferent...

On CAP's protocol for Cpn in PPMS since June 2004

Currently:  Doxy/Roxi, Flagyl pulses 

On CAP's protocol for Cpn in PPMS since June 2004 - Currently: Doxy 100mgx2/day - Roxy 150mgx2/day - Flagyl 500mgx3/day (Continuous protocol since sept.2006)

 

 

1.   _54__year old M__  F_X_

2.   Age when symptoms finally got your attention__early 30's_, if relavent.  Early symptoms traced back to 13 years old.

3.   Age at diagnosis._37__

4.   How many months have you been/were you on abx?__6__

5.   On a self-assigned number and/or the EDSS   scale, how disabled did you become? _6.0__      (0 through 10, 0 being normal, 10 being dead)  Can't be too serious - hope nobody is beyond 9!

6.   On the same scale, how disabled are you at the present time?_6.0__   Elaborate briefly, if you choose, such as listing  your worst 3 symptoms, then and now.  can walk with walker, but mostly in wheelchair

7.    Are you diligent about taking the supplementsii? YES!!

8.    If you had no improvement, what was the reason, if known?   (e.g. - "forgot" often, did not take supplements, do not have cpn)  Haven't been on protocol long enough

9.   Blood pressure, if known, at beginning and now.  Blood pressure always high-but it is low now.,   Not sure if due to        antibiotics or all the blood pressure meds I'm on.

Linda

New Hampshire USA

on CAP since 2-4-2006 for MS.  Currently on doxy 100mg, 2x day, azithromicin 250mg, m,w,f and 500mg flagyl 3x a day for five days every three weeks.

 

If there is no wind..............row
12/26/2010 Presently not on any antibiotics. Just supplements. Started new LLMD 12/09/2010. Will start (12/30/2010?)150 mg Doryx after several test are done.

Thank you, Linda!

From my vantage point, I see NO bad "stuff" anywhere, from anyone.   I can hardly wait to "hand this in".  We should get an A+!  I love it. 

Rica        EDSS 6.7 at beginning - now 2
Ignorance is voluntary bad luck.  Lauritz S.   A true Viking
If you come to a fork in the road, take it. Yogi Berra

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

I sent mine privately to Rica the first day but now I'm sorry it is so fun to read this thread.
John impressive, objective, and measurable! you opened the sensitive subject of bladder function so I will say me too. I also have retention but my retaining is around 100. I have not been rechecked but I feel like I work better there also so I am glad you mentioned it and will add my two cents when I get numbers to talk about.
marie
On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.
"Color out side the lines!"

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro

Glad to hear there's some relief to be had! lol  The problem is similar in men and women but the mechanics are different.  In the case of men, me for example, it's not a problem with the bladder per se but a problem with the prostate that occurs when the nervous system is no longer properly signalling to it ala M.S./Cpn. 

all my best

John

RRMS/EDSS 4.5 on Wheldon Protocol (doxycycline, azithromycin, metronidazole) since 04/12/2006

best, JohnRRMS/EDSS was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006nac 4x600 mg/daydoxycycline 2x100mg/dayazithromycin 3x250mg/day MWFmetronidazole 3x400mg/day then 3x500mg/day

1.  __66__ yo __F__

2.   Age when symptoms finally demanded my attention. __62_but began at 55_

3.   Age at diagnosis  __64__

4.   Number of months on therapy. __  23__ 

5.   EDSS at beginning __6.7__

6.   Now self-assigned about__2__Worst symptoms:  total lack of energy with intense, often incacitating, brain-fog; complete inability to use right leg, use of cane except in the house where walls and furniture replaced it; trike always for outside and walker away from home, and electric cart on the rare occasions for shopping.  Bladder leakage and retention.   Now on a good day all symptoms 90 - 95% gone.  Never use aids.

7.  Are you diligent about supplements?  Yes!

8.   If  you had no improvement, why?  N/A

9.   BP at beginning and now.  Always low but climbing in the last few years to 120/75, now as low as 90/60   

Rica        EDSS 6.7 at beginning - now 2
Ignorance is voluntary bad luck.  Lauritz S.   A true Viking
If you come to a fork in the road, take it. Yogi Berra

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

 Rica, here's my contribution:

1.   55 year old female

2.   Age when symptoms finally got your attention 52

3.   Age at diagnosis.54

4.   How many months have you been/were you on abx? 1 year

5.   On a self-assigned number and/or the EDSS   scale, how disabled did you become?   1.5    

6.   On the same scale, how disabled are you at the present time? 0   Elaborate briefly, if you choose, such as listing  your worst 3 symptoms, then and now.

Worst symptoms at start of therapy: brain fog, balance problems, nerve/muscle pain, headaches,vision problems, fatigue, poor immune response (frequent respiratory infections),restless legs, joint pain, low body temp. and insomnia.

At 1 year of treatment: No insomnia, no restless legs, no headaches, no vision problems, white cell count is steadily improving, immune response improved greatly(have not been sick with cold or flu once this year), body temp normal, no fatigue(lots more energy), no balance problems, no brain fog. No joint pain. Still have some slight muscle, nerve pain during/after Flagyl pulse. I have greatly improved in all areas but feel I still have some areas of infection to clear. Will continue on with treatment this coming year with some modifications as my doctor recommends.

 
7.    Are you diligent about taking the supplements? Yes, every day

8.    If you had no improvement, what was the reason, if known?   (e.g. - "forgot" often, did not take supplements, do not have cpn) Does not apply as I have improved so much.

9.   Blood pressure, if known, at beginning and now. Blood pressure has always been low to normal (110/70) but I always had low body temp 70-78 degrees. Now it is normal.

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

1. _45____year old female__

2. Age when symptoms finally got your attention_25__, if relavent.

3. Age at diagnosis.33___

4. How many months have you been/were you on abx?_12 so far

5. On a self-assigned number and/or the EDSS scale, how disabled did you become? edss`5.5 SPMS (0 through 10, 0 being normal, 10 being dead) Can't be too serious - hope nobody is beyond 9!

6. On the same scale, how disabled are you at the present time?5.5 Elaborate briefly, if you choose, such as listing your worst 3 symptoms, then and now. walking was and is the worst as I have marked drop foot on one side. I now have hand issues very slightly worse than before as they came and went before and now seem more everyday for me. I have more energy than I did. I have much, much less spasms than before and have ceased taking anti spasm med of many years duration. Also my muscles respond to massage by relaxing which they did not used to do. I feel more "normal" in terms of ability to tolerate daily activities getting more done in a day than I had for some time-I just don't collapse with fatigue as I used to.

7. Are you diligent about taking the supplementsii? yep I take copaxone also and have for many years since it came out.

8. If you had no improvement, what was the reason, if known? (e.g. - "forgot" often, did not take supplements, do not have cpn)My foot my be too long disabled for the nerve to come back I do have a black hole on my MRI

9. Blood pressure, if known, at beginning and now. 110/60 or so always.

marie

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.
"Color out side the lines!"

On CAP since Sept '05 for MS, RA, Asthma, sciatica. EDSS at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxy 200, Azith 3x week, Tini cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithro