I have been able to make it to the seventh month of capi and it has not been a easy road. When I started the Wheldon protocol my legs had gotten to a point they were so weak I could bearly stand ,and walking forget it. My husband had to get a wheelchair to help get me arounnd. My children would go grocery shopping for me and then come to the car and help me into the store so I could pay. If I had not been my own health advocate and found a doctor who had compassion and could see how sick I was my life by now would have been a nursing home.
I look back at the seven months and can't believe the strength God has placed in me to get me through this challenge.
The tough points have been the fight with severe inflamation which causes so much pain.... My doctor finally placed me on 5mgs of prednisone and now I am almost ready to do my first pulse.
The other challenge has been the battle of dizzy spells, balance, and I call it the first grade syndrome of not being able to write or spell as you can see by this horrible blog.
The good news is walking has improved and my energy is slowly making a come back. I can clean my house, grocery shop on my own and sometimes work in my yard.
I hope anyone who is a newbie can get hope by reading my blog.
pulsing will start in Jan.
Bonnie
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started Wheldon capi 4/21/08 for Cpnii, CMV, EBVii, CFSii. Currently on: all supplementsii,Doxy200, added Azith.250mgs M/W/F on 6/30/08. Naci up to 1200mgs.as tol.Vit.B12 injections daily, cholest. prn. Start Tiniii. in Jan. if all goes well.
Bonnie,The feelings that
Bonnie,
The feelings that swept over me when I read your blog came from my own time when I was where you are - thrill, excitement, happiness, serenity, exultation...I congratulate you on the persistencei that pays and pays. You may have reached a plateau from which you can reach the sky.
Rica
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Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 55 pulses LDNi Rifampin 8/08 again NC USA
Horses12,I read your post
Horses12,
I read your post after driving my daughter to school and stopping at a fast food restarant for a large cofffee with cream and sugar cause I felt too tired and whipped to make my own this morning. I too have been on the CAPi for seven months; I am in the middle of my sixth pulse. You sound a little like me at the start of the treatment as I was heading quickly for a wheelchair. My husband was desperate so that is why he sat at the computer researching for some way to make a difference and found David Wheldoni's pages. I have had a tough time, mostly tremendous nausea, but am making gradual progress. I think that you will likely find the initial pulses rather tough. I would hope you will start slow so you don't get too discouraged with the kick you get in the pants. I hope for you recovery and strength for the journey.
Thank God for our families. I don't know how people do this on thier own.
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SPMSi< Supplementsi & NACi, Doxyi 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli 1500 mg x 4 days once per month
Bonnie, Glad to hear that
Bonnie, Glad to hear that you have made some improvements. Start your pulses slowly, one pill at a time, see how you go and give yourself enough time between pulses as some reactions do not always appear in the few days after the Flagyli.
It is good to hear that in spite the difficulties you are prepared to take it further. People who have nowhere to go but down have a vested interest in staying the course....
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Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse. Zoo keeper for Ella, RRMSi, At worse EDSSi 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006
Bonnie, really happy you
Bonnie, really happy you are improving. I am supposed to be pulse 16 already, but am waiting for liver to settle down. You are very fortunate to have a loving family by your side while you treat & you will be better.
It is wierd how ones legs can feel like stumps on days. I hope you are taking lots & lots of moppers to help clear the toxins that are causing your inflammationi.
continued prayers & blessings for your journey.
peace
r
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CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli/day-3 daysBonnie, Blessings to you.
Bonnie, Blessings to you. Your blog is very well written and understandable. Please post more often everyone here is understanding of spelling and typing errors and you can correct them when you catch them afterwards if you want.
I started pulsing with Tinii at 5+ months. I took one pill first pulse and then two weeks later did a full 5 day pulse with it. No nausea at all from this drug and I have had challenges for the duration of my doxyi doses. I had a fever of 102 F day 12 I think it was and it went down quickly. I did not take anything for it. I did take Chole starting on day 5 for about a week I think it was and it was very good used this way, as a limited treatment.
A year later last month it was a 15 day full 500mg BID tini pulse. This month I am attempting to do a full 30 days pulse, I am currently on day 6, a headache on day 3 which I medicated x1. I am so greatful to say that I am doing physical cleaning agressively just now. Hang in there it has gotten so much better for me. At one point I thought that a comeback was nearly impossible but I found CAPi and I am getting my life back. May start working this winter, I am eager to contribute society.
Please post more, I watch for your posts. Happy Holidays, Louise
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Louise CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM
Louise, I thank you and
Louise, I thank you and all who have responded to my die hard comments and blogs. This is not a walk in the park and a quick fix, but a life lesson on wellness.
It is perplexing how this cpni will change you from day to day, just after I wrote my seven month update I had to make a emergency visit with my doctor. My lymph nodes were swollen to the point it was hard to swollow and in my groin area, I could feel knots. (YUCK)
Since learning more from this site, I don't panic as much and try to find info. from the forums to learn from the others. It turns out that my body depletes so quicky from B12 it not only causes muscle weakness but much of the fatigue and dizziness. My doctor wrote a prescription so I could give myself the b12 shots. How great of a doc is that!
I am looking forward to pulsing in January, although at the same time scared to death. My friends here on this site probably will hear from me a bunch!
Thank you all so much for sharing your inner pain and improvements with me. You don't realize how many tiimes I read them and am very grateful.
Bonnie
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started Wheldon capi 4/21/08 for Cpni, CMV, EBVi, CFSi. Currently on: all supplementsi,Doxy200, added Azith.250mgs M/W/F on 6/30/08. Naci up to 1200mgs.as tol.Vit.B12 injections daily, cholest. prn. Start Tinii. in Jan. if all goes well.
Bonnie, have you considered
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Louise CFSi,CPNi+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai +fattyEndotoxins HS PRN, Wheldon CAPi 6/07,all supps, Doxyi 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM
Louis, as a matter of fact,
Louis, as a matter of fact, after reading Jim's poll on the diffrent reactions to Flag.and Tinii. I have strongly considered the tini. to start of with.
Bonnie
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started Wheldon capi 4/21/08 for Cpni, CMV, EBVi, CFSi. Currently on: all supplementsi,Doxy200, added Azith.250mgs M/W/F on 6/30/08. Naci up to 1200mgs.as tol.Vit.B12 injections daily, cholest. prn. Start Tinii. in Jan. if all goes well.
Louis, as a matter of fact,
Louis, as a matter of fact, after reading Jim's poll on the diffrent reactions to Flag.and Tinii. I have strongly considered the tini. to start off with.
Bonnie
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started Wheldon capi 4/21/08 for Cpni, CMV, EBVi, CFSi. Currently on: all supplementsi,Doxy200, added Azith.250mgs M/W/F on 6/30/08. Naci up to 1200mgs.as tol.Vit.B12 injections daily, cholest. prn. Start Tinii. in Jan. if all goes well.