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Treatment progress.
By Todybear
Created 07/05/2008 - 4:06pm

Another day, another trip to the pharmacy. Darken the door of the drug store and 100 dollars doesn't go very far. I purchased a refill of Azith, more CoQ10 and a new bottle of D3 and some glucose. 150 dollars later... But, what money can't buy is the peace of mind that tell me that I am finally doing something, finally putting up a fight, finally making some progress against something that I had resigned myself to living with for the rest of my life. My husband is already blown away with my improvements as are the other family members that have been following my health over the years. I do a two km walk every couple of evenings with my husband, downhill on the way there and steep grade uphill the way back. It has been getting increasingly less difficult to make that walk. I could not walk more than 30 meters in April. I don't know if these are typical results but I am getting excited about the progress. My feet never burn and hurt anymore and I can feel most of my toes. Sensory disfunction is far less and the heat is not kicking me as hard as other summers. I know that I have a long ways to go but I can see the evidence that things are improving. I went to a party last night and my aunt that had not seen me since March said that I looked like a different person. Standing up straight and walking well. So other people are noticing now and that makes me feel so encouraged. I will keep trying to fight the nasties that accompany this treatment. The porphyriai [1] has been a real problem for me but the trade off is more than I can ask for.

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SPMSi [2]i [2]< Supplementsi [3]i [3] & NACi [4], Doxyi [5]i [5] 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli [6]i [6] 1500 mg x 3 days once per month

Hi Todybear!Glad to hear

Submitted by Maria on Sat, 2008-07-05 16:17.

Hi Todybear!

Glad to hear about your improvment!

Hope there is a lot more to come!

Best Wishes from Maria

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Tody - These are some

Submitted by Daisy on Sat, 2008-07-05 16:44.

Tody - These are some important improvements.

 Walking better, less neuropathy, look better, mind clearer, able to tolerate heat.  Excellent !

These were all some of my husband's very first improvements too.  It's been blistering down south this summer and my husband can be outside exercising in 95 degree temps with very little fall out.  

Perhaps make a list of these wonderful improvements and put them up in big letters on the door to your guest room if you go there to hibernate through your next pulse.  Help remind the whole household of the upside of the pulse downside Laughing

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Daisy - Husband on CAPi [7] 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

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Inspiring & Hopeful

Submitted by B3Better on Sat, 2008-07-05 17:36.

Inspiring & Hopeful Todybear :) This  gives myself and others hope...my dx is Lyme/Bart and I am struggling horribly with neuropathy in my feet, I would do ANYTHING to not have this symptom, it's wearing me down badly as a 39 year old male still filled with hopes and dreams, but this near constant burning makes it all so difficult.

My Lyme dx was clinical, although my lab work clearly shows some sort of infection and alot of other labwork rules out MANY other causes - I am very suspicious of CPNi [8] as I had horrible resp. sxi [9]'s for over 1 year before the onset of neuro problems.  Currently I am healthy and pretty strong, just horrible neuropathy hands/feet + some insomnia + heat intolerance that really sets off sensory neuropathy.

How long have you been on CAPi [7]?  How long ago were you dx'd with SPMSi [2]?  How long with the neuropathy?

I am so anxious to speak with my MD about CPN, really believe this could be my 'real' problem?

Please take care and continued success and sx improvement!  B3Better

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Dx'd with Lyme/Bartonella 5/1/08...Currently taking IV Rocephini [10] 4G/4Days per week / 1000 MG daily of Flagyli [6] / 500 MG Daily Azithromycin (on the fifth week of treatment) but not there yet!

 Primary sxi [9]'s since late 2006 - Burning sensation in lower

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B3better :I started on the

Submitted by Todybear on Sat, 2008-07-05 19:00.
B3better :I started on the supplementsi [3] in the middle of April and May 1st, 2008, started the abxi [11]. I have had RRMSi [12] since 1991 and it changed to SPMSi [2] sometime in 2006. I was sliding down hill fast when my husband found the protocol and discovered Sarah's and my similarities. I studied the CAPi [7] for one month then approached my Doctor to see if he would work with me. Because I had done my homework well, he was willing to help. I was seeing a neurologist specializing in MS neuropathic pain and he told me two years ago the burning pain in my feet would be chronic and to let him know if it was too much to manage because he could give me drugs for it. I managed for a couple years but after being on the CAP for one month, it left and has not been back. I cannot believe how much better I feel already. I didn't expect quick results at all as it is not a quick fix. I am hoping for a great recovery of many lost functions. I have been sick for a lot of years so I know it will not happen over night!

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SPMSi [2]< Supplementsi [3] & NACi [4], Doxyi [5] 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli [6] 1500 mg x 3 days once per month

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fantastic Tody!! Keep [13]

Submitted by raven on Sat, 2008-07-05 19:07.
fantastic Tody!! Keep going--we are cheering you on! Raven CAPi [7] since 8-05 for Cpni [8] and Mycoplasma P. for MSi [14] and/or CFSi [15] Also EBVi [16] and HHV6

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Feeling 98% well and going for 100! Still testing + for Cpni [8] since June '08.CAPi [7] since 8-05 for Cpn and Mycoplasma P. for MSi [14] and/or CFSi [15]. Also EBVi [16] and HHV6 NACi [4], Iodoral, T3, BHRT, Methylcobalamin injections, Nitro patch, LDNi [17] and Methylation supplementsi [3]

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Tody, this is so

Submitted by katman on Sat, 2008-07-05 20:37.
Tody, this is so wonderful!!! What you are and have been going through is very similar to my first year, though I truly slept through or wandered through fog during the worst. But you are seeing the good early - you deserve and need it, as does your dear, tolerant husband. I am so happy for you two.

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Rica PPMSi [18] EDSSi [19] 6.7 at beginning - now 2. Began CAPi [7] Sept, 2004 with Rifampin 150 mg 2xd, Doxyi [5] 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli [6] total 55 pulses LDNi [17] Rifampin 8/08 again NC USA

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katman, you are so right

Submitted by Todybear on Sat, 2008-07-05 21:12.

katman, you are so right about my husband needing some good news. He grows weary of worrying about me and every little bit of progress gives us that courage to carry on with this fight. He keeps telling me that he is proud of me for sticking to the protocol, but I would have to be nuts to give up on it now. I can't imagine sliding back into that pit of delerium knowing that it is a false contentment. I would rather feel the temporary anxiety and paranoia of porpheria knowing that it means we are on our way to the surface than be a permanent weight of illness dropping slowly to the bottom.

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SPMSi [2]< Supplementsi [3] & NACi [4], Doxyi [5] 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli [6] 1500 mg x 3 days once per month

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Tody, what a true picture -

Submitted by katman on Sat, 2008-07-05 22:11.
Tody, what a true picture - pit of delirium. I admire, like, and respect your husband. He really seems very like mine - please give him a hug for me. Maybe a salute would be a better way of telling him of my appreciation for doing this job. It is pretty neat to be coming out of all this, but there is no way on earth I could have done it without Richard, who has stayed with me through the horrible parts. There are lots and lots of good ones these days.

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Rica PPMSi [18] EDSSi [19] 6.7 at beginning - now 2. Began CAPi [7] Sept, 2004 with Rifampin 150 mg 2xd, Doxyi [5] 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli [6] total 55 pulses LDNi [17] Rifampin 8/08 again NC USA

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Tody- so glad to hear your

Submitted by Jim K on Sun, 2008-07-06 08:19.
Tody- so glad to hear your perspective on improvements after the blow-by-blow of difficulties with porphyriai [1] and the like. It is so confirming to see these kind of improvements after enduring the first hit of die-off and having to learn to manage the porphyria issues. I think if you don't rush the pace more than this you will winnow down the porphyrin production gradually with less troll-moments as you go!

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CAPi [7] for Cpni [8] 11/04. Dx: 25yrs CFSi [15] & FMSi [20]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [21] 1000mg/day pulses; Vit D2000 units, T4 & T3

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This is great news Tody,

Submitted by Michele on Sun, 2008-07-06 15:30.
This is great news Tody, its a good idea to speak of those improvements for your own sake and for the rest of us too.   It is very encouraging and keeps us moving forward.   Looking forward to hearing of your next progress.

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Michèle (UK) GFAi [22]: Wheldon CAPi [7] 1st May 2006. Daily Doxyi [5], Azi MWF, metroi [6] pulse. Zoo keeper for Ella, RRMSi [12], At worse EDSSi [19] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Yayyyy TBHOPE YOU HAD A

Submitted by ruthless1 on Sun, 2008-07-06 19:22.

Yayyyy TB

HOPE YOU HAD A GREAT CANADA DAY!!  

I & husband managed the trek to the legislature grounds & to the top of the building to take pics of the fireworks.  Location wasn't ideal but got a few good ones & some neat sundown pics of the old sandstone architecture detail.  It was a lot of work. 

during this "hike" I discovered my physical condition just aint what it used to be!  go figure!!! the CFIDSi [23] has me unable to do much physical exertion due to post exertional malaise for a few years now.

When I finally kick this illness, it will be a slow process for me to get back my fitness I took for granted for so very long!  But dammitl, I am going to do this.

Hang in there & show us some of that Canadian attitude of persistencei [24] I know you have!

Also, a big hug for the husband for getting you hear.  I just gave the site to another who has FMSi [20] at my church.  I hope she comes to see & goes on the protocol!.

 

blessings

 

 

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CFIDSi [23]/ME 32 yrs, FMSi [20], IBSi [25], EBVi [16], CMV, Cpni [8], 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

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Source URL (retrieved on 12/01/2008 - 2:59pm): http://www.cpnhelp.org/node/4753

Links:
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