You are here and that's good!!! Don't loose your hope and keep up that strength in you!!!!

What about the wheel chair?  if you don't like the idea try something simpler like a cane? its easier to use!!! Anything to stop those dangerous tripping please!!!! Also, you should have  ice for every time you hit to avoid swollen parts! 

So good to hear you are now more resistant to the heat, I bet it is a good sign!

I felt the same yesterday while talking to my sister in the porch and I start sweating and felt fine, I couldn't believe it.  It was like if I just came from a marathon and feeling good! But take care of not being long time outside; we have to be careful and "measured" in everything we do!!!!

We don't know when things will get better so we have to try every day to make it happen!!!  research more, look for the cause of your problem, try alternatives and the one thing I know really works is when you deeply decide to get better; I am in a healing process, punto, that's it!

God bless you and take care!!

Maria. 

___________________________________________________________

God bless you all.

MariaPatri - living in a rollercoaster! (In Orlando, Fl).

Thyroiditis, sinus infection, heart, muscles and joints. 

John, the more I observe about infection and inflammationi [7], the more it seems that you can treat the infection but the body may still be in hyper inflammation mode. I recently noticed more inflammation in my right leg and toes as well as the side of my head. I ran out of Lutimax a few months ago and haven't been taking it. I think that in some of us, we can recover from our infectionsi [8], but they leave our system in a state of hyper inflammation. Or make us hyper-reactive. If you haven't tried Lutimax, you might want to give it a try. Or Zyflamed--another anti inflammatory supplement. My lowest levels of inflammation were in the summer of '07 when I began LDNi [9], Lutimax and Bio Identical HRT at the same time. Within a month, all muscle inflammation had disappeared. The benefits did not survive getting infected with EBV  later in the summer and a 50% reduction in progesterone called for by my doctor. (He said it increased my susceptibility to viruses. I now think that the progesterone was a very significant factor in reducing inflammation.)

So I am convinced that hormone levels and some strong anti oxidants like Lutimax can make a big difference in nerve and muscle inflammation that causes weakness and pain.

If you can, have your hormone levels checked, maybe look into DHEAi [10]. Try some Lutimax.

Hang in there, guy. I think inflammation is causing your  problems. Just my 2¢ for what its worth. 

Raven

 

CAPi [1] since 8-05 for Cpni [11] and Mycoplasma P. for MS and/or CFSi [12]

Also EBV and HHV6 

___________________________________________________________
Feeling 98% well and going for 100! Still testing + for Cpni [11] since June '08.CAPi [1] since 8-05 for Cpn and Mycoplasma P. for MSi [13] and/or CFSi [12]. Also EBVi [14] and HHV6 NACi [4], Iodoral, T3, BHRT, Methylcobalamin injections, Nitro patch, LDNi [9] and Methylation supplementsi [15]

Hi John,

You sound so much like me.  I am around 4.5 EDSSi [3] more or less and I can just see myself tripping and crashing into or through the door of my house as I reach for anything to hold on to.  I have fallen on my knees so many times I know the cartilage is a mess.  It is discouraging to hear that you have been doing the protocol for two years and have not seen much reduction in your disability. Do you take vitamin B12 5000 - 10,000 mcg. a day, alpha lipioc acid 600-1200 mg a day, Omega fatty acids 4000 mg a day and leciithin 1000 mg a day?  I know that these are some of the supplementsi [15] that help myelini [16] repair.  Killing the Cpni [11] is step one and repairing the damage is a necessary second step.  To be honest with you I have trouble taking the high doses of B12 and alpha lipioc acid as they both interfere with my sleep.  But I firmly belive in their benefit.

Tina

___________________________________________________________

 Tina-MSi [13] 37 years;EDSSi [3] 4.5   1/1/08 Wheldon CAPi [1]; Azith 250mg 3 x a week; Doxyi [17] 200mg daily, NACi [4] 2000 mg daily, started Flagyli [5] pulse 4/14/08.

 

___________________________________________________________

___________________________________________________________

 

CAPi [1] for Cpni [11] 11/04. Dx: 25yrs CFSi [12] & FMSi [19]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [20] 1000mg/day pulses; Vit D2000 units, T4 & T3

Raven

Thanks for the suggestion on Lutimax.  I've never tried it and it might be a good idea.  Any suggestions on best and lowest priced sources?

___________________________________________________________

all my best

John

RRMSi [2]/EDSSi [3] was 4.5, 5, now 6 on Wheldon Protocol (naci [4], doxycycline, azithromycin, metronidazolei [5]) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi [6] 300mg/daily 03/17/2008 stopped 05/08

Tina          

I take between 6000 and 10000 mcg of B12 a day, down from around 15000 a while back.  ALA - 300mg, Omega 3s - 1000 mg.  I used to take lecithin but haven't for a while thinking I get a lot from the foods I eat.  It is a thought I'll consider about upping dosages and adding lecithin back in, thanks.

___________________________________________________________

all my best

John

RRMSi [2]/EDSSi [3] was 4.5, 5, now 6 on Wheldon Protocol (naci [4], doxycycline, azithromycin, metronidazolei [5]) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi [6] 300mg/daily 03/17/2008 stopped 05/08

Jim           

My doc and I have talked over using prednisone.  He's against doing that if we can avoid it and I'm not a fan of the idea.  I'll probably give Lutimax a try once I find a good source and see if it helps.  Zyflamend was suggested by others and yourself I believe, and I have it on my shelf but only notice an improvement short term, usually only the first 1 or 2 times I take it and then back to the plateau.  I don't disagree about taking a week off, I can keep it in check with NACi [4] if nothing else, but I'm probably not going to try it right now.  Thanks.

___________________________________________________________

all my best

John

RRMSi [2]/EDSSi [3] was 4.5, 5, now 6 on Wheldon Protocol (naci [4], doxycycline, azithromycin, metronidazolei [5]) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi [6] 300mg/daily 03/17/2008 stopped 05/08

An update on the knees.  The right one isn't purple and feels only slightly sore today.  The left one isn't completely purple as I expected but has a purple ring on it and is quite sore today.  The swelling has gone down mostly.  My back is a bit sore today due to the contortions I went through during the fall.  I should be good to go in another day or two, provided no repeats occur.  Thanks for all the good suggestions.

___________________________________________________________

all my best

John

RRMSi [2]/EDSSi [3] was 4.5, 5, now 6 on Wheldon Protocol (naci [4], doxycycline, azithromycin, metronidazolei [5]) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi [6] 300mg/daily 03/17/2008 stopped 05/08

Hi John, I am going to ask the simply obvious and and perhaps ofensive question regarding the use of a folding walker for upper body support as insurance for stumbling on a most temporary basis of course.  Even if you only use it at home and not in the outside world.  Most accidents happen in the home.  I broke a foot bone in a two step fall at home.  The next time it happened my husband was behind me and saw the event which in the end explained the first occurence.   I was destracted when the break happened, thinking about urgent current situation, had a cup in my left hand and the only railing was on my left side.  When my right foot dropped instead of heeling down properly I had nowhere to grab and down I went, landing on my left foot which rolled under me and fractured, I also sprained my right ankle. I went over and over trying to figure out how it happened as I was not consious of the right foot misstep (foot drop?)  until I was observed the second time.  Fortuantely, I fell on the contractor who had reached the landing, being a strong man it caused him no harm! This all happened before I started CAPi [1].  Whatever the cause neurologically I think I am in the right place and on the right therapy.  My home now has railings on both sides and I always have a hand on one or both.  Public places often are safer than our own homes.

I agree with Sarah and DW that the time that falls are most likely to happen is when improvements are beginning or intermittent the difficulties are more likely to happen.    Watching ones feet more is not the best adaptation and can lead to more falls as it distorts the receptors for balance as I learned on a PBS program just recently.   A folding portable walker might just keep you upright and safer around the house and in the driveway.

Louise

___________________________________________________________

Louise  CFSi [12], CPN+/Bb+,Wheldon CAPi [1] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [21] & Endotoxinsi [22] PRN, Doxyi [17] 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

Hi John, I used to order from my doctor's office because he sold it at cost but he can no longer get it. I have ordered it from various sites but noticed the price has fallen on the manufacturer's site to be competitive to anyone who was discounting it. It's still about $50 a bottle if you buy four. But I think it is a very valuable supplement at least in my personal experience.I think if you contact them they have a DVD they send out too. http://lutimax.com/ [23]

It takes about a month to feel the full effect of the supplement. Also expect some dieoff at first as is has some effect on bacteria and yeast organisms.

I hope it works for you. You deserve a break.

Raven

CAPi [1] since 8-05 for Cpni [11] and Mycoplasma P. for MS and/or CFSi [12]

___________________________________________________________
Feeling 98% well and going for 100! Still testing + for Cpni [11] since June '08.CAPi [1] since 8-05 for Cpn and Mycoplasma P. for MSi [13] and/or CFSi [12]. Also EBVi [14] and HHV6 NACi [4], Iodoral, T3, BHRT, Methylcobalamin injections, Nitro patch, LDNi [9] and Methylation supplementsi [15]

John- I agree on the Zyflamend, has an effect but seems to last only a week or so at most, so great for a short term boost. I had mixed response to the Lutimax, still have bottles kicking around which I may give a try to again. Some things seem to work better as I'm addressing less infection overall. The important thing is to be a problem solver, as you are doing, and not let something go without posting and getting some feedback and ideas. We are all such individual cases when it comes down to it, and lot's of tweaking may be needed to find what we need to do this well.

___________________________________________________________

 

CAPi [1] for Cpni [11] 11/04. Dx: 25yrs CFSi [12] & FMSi [19]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [20] 1000mg/day pulses; Vit D2000 units, T4 & T3

John- I agree on the Zyflamend, has an effect but seems to last only a week or so at most, so great for a short term boost. I had mixed response to the Lutimax, still have bottles kicking around which I may give a try to again. Some things seem to work better as I'm addressing less infection overall. The important thing is to be a problem solver, as you are doing, and not let something go without posting and getting some feedback and ideas. We are all such individual cases when it comes down to it, and lot's of tweaking may be needed to find what we need to do this well.

___________________________________________________________

 

CAPi [1] for Cpni [11] 11/04. Dx: 25yrs CFSi [12] & FMSi [19]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [20] 1000mg/day pulses; Vit D2000 units, T4 & T3

Another update on the repercussions from the fall the other day.  I've been having back pain in the small of my back, especially when standing up or lifting my legs.  I took Naproxen Sodium (Alleve) yesterday and today and noticed something I wasn't expecting - more pain.

At first, yesterday I chalked it up to just being a day and having had more pain since it had been a day and it sometimes takes some time before one really notices pain.  Today, I'm now thinking that the Alleve has caused it because I noticed that pain got sharper after taking it.  I would have thought that pain would be less, but that isn't the case.

Not sure why there would be more pain but any thoughts about it are welcome, thanks.

___________________________________________________________

all my best

John

RRMSi [2]/EDSSi [3] was 4.5, 5, now 6 on Wheldon Protocol (naci [4], doxycycline, azithromycin, metronidazolei [5]) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi [6] 300mg/daily 03/17/2008 stopped 05/08

John, Trauma to bones,nerves,tendons and cartilage and muscles, often vary in the response time of the tissue to produce an inflamatory and/or pain response, swelling, decreased motion etc.   My experience with muscle is that it can take up to several days to really begin to be bothersome.  Thank goodness, you seem to have missed bone injuries in your fall. 

Doubtful that anti-inflamatory medicatons would cause it in my humble opinion.

Louise

___________________________________________________________

Louise  CFSi [12], CPN+/Bb+,Wheldon CAPi [1] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [21] & Endotoxinsi [22] PRN, Doxyi [17] 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

___________________________________________________________

Thanks Sarah.  I'm not inclined to use Bromelain but that's good to know.  I might go ahead with the Lutimax which someone else suggested earlier.  Not sure it will max a difference in the pain, probably not.  Don't have a clue why the pain would go up after taking Naproxen Sodium, definitely puzzling.  Maybe it's psychosemantic but not sure why it would be.  Causing myself more pain when trying to reduce pain is crazy!

Speaking of causing myself more pain, yep, you guessed it, I tripped and fell again.  This time, my hands bore the brunt of the fall as I caught myself coming down on the floor.  I still hit my knees some, but not nearly like the other day.  However, as sore as they already are, it wasn't painless and if this keeps happening, probably will never heal.  Such is life.

___________________________________________________________

all my best

John

RRMSi [2]/EDSSi [3] was 4.5, 5, now 6 on Wheldon Protocol (naci [4], doxycycline, azithromycin, metronidazolei [5]) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi [6] 300mg/daily 03/17/2008 stopped 05/08

John, do you use a cane? It made a big difference in my life when I was stumbly. Later I went to a walker with a fold-down seat. for which I was grateful many times. A few years later I gave it and the walker away, but it was well worth the $10 I spent on it at Walmart.

___________________________________________________________

 

Rica PPMSi [24] EDSSi [3] 6.7 at beginning - now 2. Began CAPi [1] Sept, 2004 with Rifampin 150 mg 2xd, Doxyi [17] 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli [5] total 55 pulses LDNi [9] Rifampin 8/08 again NC USA

John, my goodness I agree with Rica get some support and I humbly add take a trip to physical therapy and get an assessment of that back thing. I recently had a really similar bunch of falls and eventually found out I had sprained my back so treatment was a different ball of wax. Mine seems to be getting better, but may I say, when the back is really bad, the walking is at least hapmered by about 25%. Somehow your back is key to walking well so if it is stiff and sore you don't walk the same. Hope that helps!

___________________________________________________________
On CAPi [1] since Sept '05 for MSi [13], RAi [25], Asthmai [26], sciatica. EDSSi [3] at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi [17] 200, Azith 3x week, Tinii [20] cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithromy

John, just a thought...

I take 5 X 5000 mcg of B12 a day sublingual.

I am not sure if a person with MSi [13], much less anyone, should be taking Aleve due to side effects.  It isn't allowed into Canada.

I fell off my desk (I know what you are thinking...what the hell was she doing on her desk) trying to get on my desk, with a stool & my leg gave out.  Phew, the bruising is major.  Good news, the door blocked my fall so I didn' break anything or land on my head!

I hope you feel better soon!  Chin up, onward & upward.

r

___________________________________________________________

CFIDSi [27]/ME 32 yrs, FMSi [19], IBSi [28], EBVi [14], CMV, Cpni [11], 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

Ole probable-MSi [13]-me has been taking Aleve when needed since being diagnosed in 2005, with the blessing of a GP, an MS neuro and my prescribing physician.  Never had any Aleve 'side-effects' except the benefit of banishing rare headaches and reducing inflammationi [7].

I pulled a muscle in my back three days ago and have been living on the stuff since then.  Today, my back is almost normal and all's well. The Aleve bottle is once again back in the cabinet, awaiting the next call for help... 

 

___________________________________________________________

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

Lutimax update - I placed an order for 4 bottles on Wednesday.  I was expecting to see some sort of comfirmation email but didn't see one and called the company to ask about it.  The regular person is sick so they're running behind but should ship it soon.

I'm also contemplating upping the dose of GliSODin.  I haven't been diligent about taking it but I now have reason through first hand experience to convince me to take more of it and will give it more attention.

___________________________________________________________

all my best

John

RRMSi [2]/EDSSi [3] was 4.5, 5, now 6 on Wheldon Protocol (naci [4], doxycycline, azithromycin, metronidazolei [5]) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi [6] 300mg/daily 03/17/2008 stopped 05/08