I just got home from my big 6 month recheck. While I am thrilled to see progress I'm troubled by Dr. Srirams disposition. He was absolutely amazed over my progress and the video of our weekly 25ft walks going from 58 seconds with sticks to 6 plus seconds unaided. He actually let his staff also view them. He watched me walking in the hall and thought that some of my balance issues are related to my hips being uneven. (years of having a gait i'm sure) He did a few strength tests and seemed pleased,then the look of doubt clouded his face again. he was rifling through my files as if there was something he missed. He consulted with another doctor in the office and was wondering if this was really an exacerbation being cleared up vs. progression.
My vision has improved in both eyes,and I am overall way better than I was 6mo. ago. He has told me to discontinue my daily copaxone as he said"it does nothing for you". WAHOO!!! He doubled my pyruvate,took some blood, and scheduled my next appointment for January. He will do an MRI at that appointment to verify his findings. He gave me another years worth of prescriptions for the Abxi. He would very much like us to find a nearby doc to follow me but not necessarily a neuroi.
I know he is a "frusterated scientist" (as Ken and I agree) but I want to be the grain of sand that makes it all worth it!
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RRMSii since 3/84; SPMS since 2/05. Rifampin, Azithromycin, Tindamax Flagylii Copaxone, Avonex, Novantrone, Provigil, 5gm NACi, 5gm VitC, 5000IU VitD3 & more. EDSS 5.5 to 6.5. Can't wa
Kim and Ken, you are the
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 51 pulses NC USA
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3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amoxicillini 1000, Doxyi 200, MWF Azith 250, flagyli 1000. Caffeine pills with AM abxi Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1
K & K, Blessings to the
K & K, Blessings to the blessed. May you continue on this path and surpass your expectations.
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.
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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.
Kim Thank you for posting
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Kim, I am SO glad all of
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
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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
Kim- That's some fabulous
Kim- That's some fabulous improvement. I think it's very validating for the CAPi version Sriram is using. But he's a scientist, and one person's clinical results always leave scientific questions open that he knows he will be asked if he points to your results. So he asks them himself and is frustrated that something he is so sure of clinically isn't yet truly proven scientifically. Don't begrudge him this too much, for if anyone is going to bring this treatment to science it is him.
CAP for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Currently: 300mg BIDi Roxithromycin, Bactrim DS 2x/day, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
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CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3, 12mg Iodoral
Kim, as Mack says, "we
Kim, as Mack says, "we all have bemused days" and Sriram has probably more than many. Obvious reason is that they have undergone so much criticism for what they have been doing at Vanderbilt and he as a neurologist will have taken the brunt. He did write to me once saying that he was sorry to hear that I had been having a rough time: what rough time? It was news to me.
.......Sarah
An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after nearly four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi was 7, now 2, less on a good day.
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Kim I am so glad you were
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On CAPi since Sept '05 for MSi, RAi, Asthmai, sciatica. EDSSi at start 5.5.(early cane) Now 6 (cane full time) Originally on: Doxyi 200, Azith 3x week, Tinii cont. over summer '07, Revamp of protocol in Summer '08 by Stratton due to functional loss; clarithromy
I think Jim touched on
I think Jim touched on something that crossed my mind as I read your account of how Dr. Sriram looked worried. He is in the position to be taken to task about the science behind what he's doing and may be thinking about how he's going to be able to prove the science vs. the clinical results.
A possible adjunct is that he may be acting as the kind of doctor that wants to see his patients succeed and as such, doesn't want to get so excited that one of them stops treatment out of excitement. Just a possibility that crossed my mind.
Congratulations on the progress. May you have much more!
all my best
John
RRMSi/EDSSi was 4.5, was 4.???, now 5 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007.
Added INHi 300mg/daily on 03/17/2008Stop___________________________________________________________
best, John
RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999 on Wheldon Protocol (naci, doxycycline, azithromycin, metronidazolei) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007.
Added INHi 300mg/daily 03/17/2008stopped 05/08. AddedKim and Ken keep up the
Kim and Ken keep up the wonderful work of documenting your progress, the video idea is excellent and keeping good notes on changes for your self and their record. I am impressed with the changes that you have made. Ever hopeful for more.
Louise USA.CFSi.CPn Positive.BbPositive.WheldonCAP6/24/07.NACi,Doxyi,Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi.
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6-07WheldonCAP CPnBb FMSi-CFS20+yr, 11-07Cholestyramine HSPRNx7d-porphyrin+endotoxini
3-08Iodoral, 5-08BHRT, 8-08Same+Bs, 10-08D-10,000IU
2-09Intermit-CAPDoxi
RoxiClari,Tinii, 2-09LDN-CFS1-10-IT+Ursodiol300Bid+Lauricidin
Pioneers we are. Yes,
Pioneers we are. Yes, that's what this club is all about. Explorers. The timed walks work because we're also videoing them and I've figured out how to make copies of the resulting DVD's. I think it's going to one day enhance the discussion to be able to look at the walks. Sarah was right-on-spot with this. Did I say that correctly? One issue that I'm now thinking about is shoes. More on this revalation and my thoughts about this appointment at my thread at TIMS.
Ken
(Thank you Twickle Purple for showing me how to make the link!)
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In pursuit of ABX
Don't Allow What You Know To Get In The Way Of What Might Be
Kim & Ken, this is an
Kim & Ken,
this is an amazing journey & you are so very lucky to have Dr. Sriram on your side. Science isn't black & white with us humans so it must be frustrating that we are complex beans!
May Blessings continue for you both.
r
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CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Sea Kelp,Iodorol, Inositol, Chitosan, L lysine Pulse#25 01-27-10 1gm Flagyli/day-5 days