This is a short blog of hope for those of us who are having a hard time seeing far ahead.
Last Sunday night I finished my 53rd pulse of flagyli. After more than three and a half years, I was back on Rifampin. Vertigo had hit me fairly hard as soon as I took my first capsule so I was curious how this pulse would affect me. Last fall and this spring I did extended pulses and was not mightily affected, which was encouraging in itself.
<> This pulse was not bad - nothing like the first sometimes nightmarish years. It impacted my walking and greatly increased my vertigo. BUT- Monday, I furiously cleaned house, doing some very long overdue stuff, , Tuesday went for grain and did errands, then came home and did more hard work. I realized by then that I wasn't going to have bad aftermath.
<>Yesteday I did outside overdue work and stood flailing with a broom in my hands and both arms over my head at dust, cobwebs, and anything else that needed to be brought down, then washed windows. It has been a long, restrictive year and it felt sooo good and the ridiculouly wimpy aftermath of flagyl, after these four years, was an indescribably delightful feeling. Hang on, those who despair. I have always said it is worth it. Now I am shouting it.
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Rica PPMSii EDSSii 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyii 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 55 pulses LDNii Rifampin 8/08 again NC USA
That is what we want to
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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
Rica What good news! Are
Rica
What good news! Are you saying that you think the rifampin caused the vertigo? I have been somewhat dizzy since starting this protocol in January and hadn't connected it to rifampin, which I take twice a day. But that would make sense, if it was!
Lori
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katman~ Your encouraging
katman~ Your encouraging words are appreciated!
Timaca
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Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBVi, VZV, and HSV1 6/07. Diagnosed with CPni 5/08. On antibioticsi for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi bid for Cpn and acyclovir for viruses.
Yes, Lori, I think it is
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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
Thanks Rica,This makes me
Thanks Rica,
This makes me feel better as I was afraid that the dizziness was a worsening of my MSi. I don't know why I didn't think of this!
Lori
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Rica, thanks for sharing!
Rica, thanks for sharing! So happy for you!
It must feel good to be able to do all that again.
I hope you will continue to feel better and make a full recovery!
Best Wishes from Maria
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Cpni since sep 2006. Autoimmune thyroid,hypofunction.levaxin,b12+folic acidi.All classic cpn,porphyriai and toxinsymtoms.Not able to work.Selftreating cpninfection with AllicinMax(garlic), NACi, high vitamin D3. Also treating with LIFE system and shaktimat
Rica, Such a wonderful blog
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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
Just a comment in passing
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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
Rica, you go
Rica, you go girlfriend!!!
Although I've been extremely discouraged after I relapsed (before finding CAPi) from what I felt was recovery last year, to finding the CAP very difficult (isn't anything that's worth doing?) I can totally relate to the feeling of wanting to and being able to do simple tasks that most take for granted.
Wow, Rica, you are my inspiration here. I'm so glad you've posted this along with your other post about returning to rifampin. It was very helpful for me to read how well you are doing now after much struggle.
I can't wait to be there too, but I have hope now.
BTW, I've often wondered if I was misdiagnosed, but you're right... who cares? Just as long as I'm reversing whatever it is I have!
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NACi 2.4g, Zithi 250mg/MWF, minoi 200mg, Tinii 5day/1g/5 pulses, Valcyte
Don't believe everything you think!Iodoral 12.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Sec Addisons
That sounds just wonderful
That sounds just wonderful Rica. We need your courage, encouragement and perspective. i am highly suggestible so it doesn't take much to get me going. I just recovered from a virus and was so happy to be functioning at all better that I had a dream about walking in which the energy burst was so unexpected that i couldn't help but jog. Isn't getting better fun ?!
Nancy
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PPMSi-misdiagnosed 2001-diagnosed 2006. Also maybe csf and Lyme -- who knows?! Minocycline 7 mos.- resulting bronchitis 5 months. Deserted by Hopkins neurology dept. and going to private md. out-of-plan. Wheldon CAPi 3/2/07 - 200 doxyi; azith MWF. 5 pulses.
Cobwebs! Its the spider
Congratulations Rica, keep, up the good work!...............Sarah
An Itinerary in Light and Shadow
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Thank you, Sarah, It has
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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
And here is Samantha,
And here is Samantha, just outside the window next to my drawing table. I don't think she bites but I might find out soon when I have to open the window to water my geraniums...............Sarah
An Itinerary in Light and Shadow
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nice capture Sarah! as
nice capture Sarah! as soon as I read your post I thought, ooooh, I wish I had that in front of my Macro! After much deliberation, I got a Tamron 90 Di for my Nikon D80, fairly light weight as I am quite shakey & a monopod.
Rica, you are one amazing woman, when I think about you, I think, this is what God is talking about. Beautiful, inside & out. ! The visual I got, as you described swinging your arms & broom around was priceless.
I am only pulse 14, 1 gm for 5 days & Praise God, 2 more pills to pop & done! I haven't been sleeping well & I feel like crap, energy zapped. The good thing is...no Troll Queen so the moppers are keeping things maintained. Cleansing organs are in pain, I think that is waking my fine line of sleep.
have fun
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 days