Hi everyone,
Just had #3 appointment with Dr Powell yesterday. I actually saw his P.A again instead of Dr Powell himself but I like him just as well...couple things...
I went in there all amped up to start abxi, I have done the research, I have pumped my body full of vitamins and supplementsi the past 5 weeks, I have been feeling better and am just ready to kill this thing. So I admit I was a bit discouraged when he did not prescribe abxi yet...we went over my bloodwork and he pointed out the following:
- elevated titers and "heavy loads" of HHV-6, Epstein Barr, Herpes simplex, mycoplasma, and CPNi. geez, i thought the CPN was the culprit I didn't know I had to deal with all of these viruses first. He wants me to take Valtrex 1000 mg 1/day and then work up to 2/day, and THEN we can talk abx. I don't know why this bothered me and I don't know why I am reluctant to take Valtrex every day, maybe just b/c it is so expensive :)
I think I am just being antsy and want to get back to my previous state of 25 year old shenanigans asap, and i'm TIRED of being patient and TIRED of feeling sick and TIRED of having this whole thing be so unpredictable. I know I am really lucky to be in the hands of a really good doctor though and i need to just suck it up and do what he tells me to do...
but was just wondering how many of you have been treating with Valtrex and what your response has been with antivirals...I was under the impression that treating the CPN would put the viruses under control, but maybe not...just needed to vent a bit. Thanks for any advice...
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Gearing up to starting abxi protocol from Dr. powell.
Initial diagnosis of Interstitial Cystitisii (july 06), progressed to all over falling apart syndrome within the past year. Current supplementsii/meds: sublingual B12, ursodiol, Niacinii, NACi 1200 m

Dr. Powell has been
Dr. Powell has been applying his protocol to his particular patient group who he has found often to have multiple infectious sources as part of their clinical picture. He is dedicated to making the treatment process as easy as it can be, and has found that for his patient population lowering viral loads can often help people feel better sooner. It gives them a better platform for anti-Chlamydial therapy.
Don't hesitate to call to speak to Michael again and have him explain the rationale for going about it this way in your particular case. We often don't take in the whole thing during a visit, or only think of questions we need to ask afterwards.
CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Protocol: 200mg Doxyi, 500mg MWF Azith, Tinii 1000mg/day pulses; Vit D1000 units, Cytotec 100mg, Plaquenil 100mg, Magnascent Iodine 12 drps/day, T4 & T3
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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
Is the valtrex treatment
Is the valtrex treatment specific to the EBVi, herpes, or HHV6, or all 3?
Mphs, TN. CFSi, hypoT (Hashi), weak adrenals, 37 w/hormones of 80 yo. right arm neuropathy. + for cpni, myco, EBV, CMV. on NACi 3600mg, doxyi 100-2xday, azith 250 m/w/f, estriol, progesterone, synthroid, and pulsing w/flagyli.
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Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpni, myco, EBVi, CMV. NACi 4000mg, doxyi 100-2xday, azith 250 m/w/f/sun, progesterone,
estriol, synthroid, pulseflagyli,tinii<My MD wanted to include me
My MD wanted to include me in a trial of Valcyte but when he learned I was living alone and didn't have real support, we both decided that Valcyte would be too tough for me on my own.
Valtrex is supposed to be easier to tolerate isn't it? I'm wondering if I should mention Valtrex to my MD and see if that would be a good thing to to begin. I'm on Doxyi now (200mg/day). Hmm, just wondering. What's the scoop on tolerating Valtrex?
63 year old woman feels like 80! CFSi since 1998. Severe fatigue and awful reverse sleep main symptoms. No Fibro. Tested positive for CPN 3/07. Severe reaction to azithro (begun slowly in 5/07) - stopped. Started 100mg Doxy 2X/day 1/11/08. Also t
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63 year old woman feels like 80! CFSi since 1998. Severe fatigue and awful reverse sleep main symptoms. No Fibro. Tested positive for CPN 3/07. Severe reaction to azithro (begun slowly in 5/07) - stopped.
I have taken both Valtrex &
I have taken both Valtrex & Famvir antivirals for herpes I.
Presently I only take about 2 gms of L Lysine a day & keep the probiotics up to snuff. If the balance gets off kilter then I add the Famvir back.
I know when I went to the FFC for testing & results 2 yrs ago, they told me I was in no condition to start taking abxi for the Lymes so I had to pump more vitaminsi down for 6 months & then I treated it. At the time I didn't ask why --- well, I guess I was in worse shape than I thought I was.
I can't speak for everyone here, but I am pretty desperate to get my life back, not like I was 25. I can look back now with experience & see that I was waaayyy out of control, running on adrenaline, doing too much.
Listen to what your very good experienced doc tells you & follow it carefully. You will be back in the saddle soon enough!
Blessings
CFIDSi/ME 25yrs, FMSi, IBSi, EBVi, Cpni, (insomnia - melatonini, GABA, tarazadone, triazolam, novocyclopine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, 1-3-08 5th pulse 1 X 375 mg 4day
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CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#13 1240 mg X 3 days 8-7-08Kelly, I was treated with
Kelly,
I was treated with Valtrex last year due to high levels of EBVi and slightly elevated HHV-6. I took it for about two months. My EBV levels were so high that I really believed it was at the root of my problems, and I was very hopeful the Valtrex would be my answer.
I do believe I had some die-off type reactions at the beginning, but otherwise there were no side effects or anything bothersome. The bad news is that I felt exactly the same during and after the treatment as I had before. There was no improvement for me. Also, my doctor did not do any follow-up testing to determine whether my levels for the EBV or HHV-6 had decreased after the treatment, so I really don't know whether it benefited me or not.
I don't suppose I've been very helpful, but I guess I just wanted to tell you that other than the early die-off, there were no problems with taking Valtrex for me.
Finch - Western PA USA
ME/CFSi since 1991 - CPni diagnosed 6/07 - began Cipro 750 mg 2x per day - added NACi 7/07 - Stopped Cipro and began Doxyi 9/10/07 - 100mg 2x per day on 11/3/07 - Azith 250mg M-W-F started 10/10/07 - NAC at 2400mg per day 1/08
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Finch - Western PA USA
ME/CFSi since 1991 - CPni dx 6/07 - began Cipro 1500mg per day - added NACi 7/07 - switched to Doxyi 9/10/07 - 100mg 2x per day 11/3/07 - Azith 250mg M-W-F 10/10/07 - NAC 2400mg per day 1/08 - Flagyl 500mg 3/28/08 gradually inc
Finch, glad that you posted
Finch, glad that you posted your experience...I'm contemplating asking for a script of it to see if it helps my fatigue. I know it is controversial as to whether or not EBVi can cause fatigue and other problems. It would have been interesting to see if your titers came down. but I dont know enough about the tx to know if 2 months would have effected your numbers.
Mphs, TN. CFSi, hypoT (Hashi), weak adrenals, 37 w/hormones of 80 yo. right arm neuropathy. + for cpni, myco, EBV, CMV. on NACi 3600mg, doxyi 100-2xday, azith 250 m/w/f, estriol, progesterone, synthroid, and pulsing w/flagyli.
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Mphs, TN. CFSi, hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpni, myco, EBVi, CMV. NACi 4000mg, doxyi 100-2xday, azith 250 m/w/f/sun, progesterone,
estriol, synthroid, pulseflagyli,tinii<Kelly I also see
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jodieGearing up to starting abxii
Gearing up to starting abxi protocol from Dr. powell.
Initial diagnosis of Interstitial Cystitisi (july 06), progressed to all over falling apart syndrome within the past year. Current supplementsi/meds: sublingual B12, ursodiol, Niacini, NACi 1200 m
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Gearing up to starting abxi protocol from Dr. powell.
Initial diagnosis of Interstitial Cystitisi (july 06), progressed to all over falling apart syndrome within the past year. Current supplementsi/meds: sublingual B12, ursodiol, Niacini, NACi 1200 m
Thanks everyone for the
Thanks everyone for the comments, I do feel very lucky to have found Dr. powell. His PA wants me to get my body temperature up before starting the Valtrex. I responded that I thought my body temp was perfectly normal, and sure enough he took my temp right then and it was 97 degrees, wow! they really know their stuff, it is so refreshing. I will update on what the valtrex does for me to see if maybe it could benefit anyone else...
Gearing up to starting abxi protocol from Dr. powell.
Initial diagnosis of Interstitial Cystitisi (july 06), progressed to all over falling apart syndrome within the past year. Current supplementsi/meds: sublingual B12, ursodiol, Niacini, NACi 1200 m
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Gearing up to starting abxi protocol from Dr. powell.
Initial diagnosis of Interstitial Cystitisi (july 06), progressed to all over falling apart syndrome within the past year. Current supplementsi/meds: sublingual B12, ursodiol, Niacini, NACi 1200 m
Hi Kelly, I am also working
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CAPi since 8-05 for Cpni and Mycoplasma P. for MSi and/or CFSi Also EBVi and HHV6
Hi Kelly, My husband's
Hi Kelly, My husband's doctor started him on Valtrex from the beginning, even before testing. He took it for 7 months; then he was switched to acyclovir to work on other viruses. He's been taking acyclovir for 10 months. I'm glad he was taking Valtrex in his early months on the CAPi, because I believe it prevented viral flares, a common problem for new CAPers. Actually, I hope to see him take Valtrex again or some other highly effective anti-EBVi antiviral, as he was recently retested for EBV---still too high. During his months on Valtrex and for several months afterward, he had no fever blisters/cold sores, a problem that was frequent before the Valtrex. He has had three cold sores now in the past 3 months. HHV-1 in and of itself causes more problems than just innocuous little fever blisters, especially for the immuno-compromised, and I read its flares as though it were a barometer for other viral activity.
Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAP since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBV, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.