Keflex caused Pseudo-Relapse

Minai- There is a group in

Submitted by Jim K on Sun, 2008-03-16 18:23.

Minai- There is a group in Colorado treating Cpni [5] and other infectionsi [6] using IV Rochephin as well as IV metronidazolei [7] and amoxicillan. Their reports to Dr. Stratton are that they get fewer die-off type reactions than with oral dosing... go figure. This is, however, a daily thing so you have to have a port put in for that protocol. But I thought I'd mention it as it seems that IV, which we've all been paranoid about because of the potential of massive die-off and porphyriai [8], for some reason doesn't seem to produce that. So it might be helpful.

CAPi [3] for Cpn 11/04. Dx: 25yrs CFSi [9] & FMSi [10]. Protocol: 200mg Doxyi [11], 500mg MWF Azith, Tinii [12] 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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CAPi [3] for Cpni [5] 11/04. Dx: 25yrs CFSi [9] & FMSi [10]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [12] 1000mg/day pulses; Vit D2000 units, T4 & T3

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hi jim ! Yes Dr Stratton

Submitted by jak7ham9 on Sun, 2008-03-16 18:42.

hi jim ! Yes Dr Stratton told me that too. What was the name I am interested in checking it out. Supposedly may speed up recovery with iv and glutathione I think. barbara NACi [2] and glutathione push for years all supplementsi [13] in protocol)IV vitaminsi [14] b1-12,C50gm,magDoxy200 10-/14/07, NAC 2400Doxy200mgAzithMWF10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagyli [7] 1day 500x2 11/23/20074th pulse 2.8.081500mg 8days

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NACi [2] and glutathione push for years all supplementsi [13] in protocol)IV vitaminsi [14] b1-12,F10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagyli [7] 1day 500x2 11/23/20074th pulse 2.8.081500mg 8days 7/08 finished 10th pulse on 300 rifamp bid, doxybid 7/2008

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here is alink for als

Submitted by jak7ham9 on Sun, 2008-03-16 18:53.

here is alink for als treatment/cure in colorado with iv rocephini [15] . Someon should forward to brad? http://www.angelfire.com/planet/lymedisease/7/Harvey.html [16] NACi [2] and glutathione push for years all supplementsi [13] in protocol)IV vitaminsi [14] b1-12,C50gm,magDoxy200 10-/14/07, NAC 2400Doxy200mgAzithMWF10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagyli [7] 1day 500x2 11/23/20074th pulse 2.8.081500mg 8days

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NACi [2] and glutathione push for years all supplementsi [13] in protocol)IV vitaminsi [14] b1-12,F10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagyli [7] 1day 500x2 11/23/20074th pulse 2.8.081500mg 8days 7/08 finished 10th pulse on 300 rifamp bid, doxybid 7/2008

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Hi here is a whole story on

Submitted by jak7ham9 on Sun, 2008-03-16 19:10.

Hi here is a whole story on ALs and IV abx Barbara http://www2.gazette.com/display.php?id=1314832&secid=1 [17] N AC and glutathione push for years all supplementsi [13] in protocol)IV vitaminsi [14] b1-12,C50gm,magDoxy200 10-/14/07, NACi [2] 2400Doxy200m ad ivgAzithMWF10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagyli [7] 1day 500x2 11/23/20074th pulse 2.8.081500mg 8days

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NACi [2] and glutathione push for years all supplementsi [13] in protocol)IV vitaminsi [14] b1-12,F10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagyli [7] 1day 500x2 11/23/20074th pulse 2.8.081500mg 8days 7/08 finished 10th pulse on 300 rifamp bid, doxybid 7/2008

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Thanks for sharing what Dr.

Submitted by Minai on Sun, 2008-03-16 19:50.

Thanks for sharing what Dr. Stratton has to say about this, Jim.

Yes, my doc said the same and that I had 3 choices for the Rochephin: 1) A PICCi [18] line 2) X# of IMs/week and 3) Regular IV's X#s/week. Option 1 costs $4,000+ and options 2 and 3, $2,000+. Insurance will not cover it. Would have to pay for it, all out-of-pocket.

Said he treated an elderly man with MS with Rochephin, several years ago. The man was in a wheelchair, had a catheter and colostomy. Could not even talk. After the Rochephin, he could do all of these things for himself again. But, then, his elderly wife could not transport him the distance for treatment, anymore. They started seeing a local doc who prescribed a single ABXi [19] for him (can't remember which one). But the man developed C-diff and was back to his previous condition, last my doc had heard.

Sarah said that she thinks it was probably due to being on only one ABXi [20], not combined with any other. I know that I would continue with the roxi and doxyi [11] if I do decide to do the IVs.

--Minai

RRMSi [1], diagnosed 2/04. NACi [2] 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi [3] with NAC and Doxy 2/07. LDNi [4] 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USA

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Thanks, Barbara. Great info!

Submitted by Minai on Sun, 2008-03-16 19:53.

Thanks, Barbara. Great info! I think that Jim had told Brad that he was sending him some info on it? I know that if I had ALS I would do whatever it took to do the IVs.

--Minai

RRMSi [1], diagnosed 2/04. NACi [2] 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi [3] with NAC and Doxy 2/07. LDNi [4] 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USA

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Minai, I also said that I [21]

Submitted by Sarah on Mon, 2008-03-17 05:44.

Minai, I also said that I doubted the accuracy of the fact that this elderly man was suddenly so recovered from MSi [22] after IV rocephini [15]. It seems like the tales about people using Aimspro who are suddenly able to jump out of their wheelchairs and walk miles.

One other thing about taking any IV substance is the danger of getting an infected line. This is very easy to get, then very hard to get rid of..........Sarah

An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi [23] was 7, now 2, less on a good day.

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Completed Stratton/Wheldon regime for aggressive secondary progressive MSi [22] in June 2007, after nearly four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi [23] was 7, now 2, less on a good day.

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Minai, also needs to be

Submitted by Louise on Mon, 2008-03-17 07:43.

Minai, also needs to be mentioned the potential effect on infected liver cells (hepatocytes) if you happen to be an individual that has a large site of infection in this very necessary organ.

I know a number of individual sthat have treated for Bb in the past with IV single Abxi [19] admin. Most seem to have relapsed after a period of being improved.

Unless there is no other choice and that is the case sometimes, the longer moderate CAPi [3] oral approach, is effective and both cost and outcome for many. IV's it all has to be watched very closely to avoid excessive destruction of liver cells.

I took Doxyi [11] 400 mg per day initially for 14 weeks, increase the concentration of many of these ABXi [20] and you will get to the Kill Level dose and will be dealing with massive die off. I am sure that I could do that now regardless of the decrease in my bacterial loadi [24] that has been accomplished over the past 9 months.

The doses of abx on the Wheldon CAP are moderated to keep the bacteria in suspended animation and allow for natural die off over time. Then periodically as we start to pulse we add a drug that does kill. It is all a very interesting picture, if you can separate yourself from the topic as you think about it!

Louise

CFSi [9]/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxy, Roxi, TiniPulse#4 Ended2/3/08. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

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Louise CFSi [9],CPNi [5]+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai [8] +fattyEndotoxins HS PRN, Wheldon CAPi [3] 6/07,all supps, Doxyi [11] 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

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Dear Sarah you are probably

Submitted by jak7ham9 on Mon, 2008-03-17 07:44.

Dear Sarah you are probably right. I always doubt immediate sucess /cure stories. Is aimspro that goat stuff? The only reason I added the links was that Dr Stratton had mentioned that they were working on a shorter/faster protocol and had mentioned iv antibioticsi [19]. BarbaraNAC and glutathione push for years all supplementsi [13] in protocol)IV vitaminsi [14] b1-12,C50gm,magDoxy200 10-/14/07, NAC 2400Doxy200mgAzithMWF10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagyli [7] 1day 500x2 11/23/20074th pulse 2.8.081500mg 8days

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NACi [2] and glutathione push for years all supplementsi [13] in protocol)IV vitaminsi [14] b1-12,F10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagyli [7] 1day 500x2 11/23/20074th pulse 2.8.081500mg 8days 7/08 finished 10th pulse on 300 rifamp bid, doxybid 7/2008

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I think for anyone

Submitted by Sojourner on Mon, 2008-03-17 08:08.

I think for anyone considering IV, an alternative might be (although kind of ouchie!) IM Bicillin. It's considered very close in effectiveness to IV Rocephini [15] without as many risks. --------------- "Chance favors the prepared mind." --Louis Pasteur Husband treating MSi [22] with CAPi [3]

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--------------- "Chance favors the prepared mind." --Louis Pasteur Husband treating MSi [22] with CAPi [3]

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Barbara, no criticism at [25]

Submitted by Sarah on Mon, 2008-03-17 08:30.

Barbara, no criticism at all about your links! I know also that Stratton is working on a shorter , faster protocol, but the fact remains that using IV abxi [19] without extreme care and this means probably in a hospital environment, you are liable to acquire new infectionsi [6] by that route.

Yes, aimspro is that goat stuff!..........Sarah

An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi [23] was 7, now 2, less on a good day.

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Completed Stratton/Wheldon regime for aggressive secondary progressive MSi [22] in June 2007, after nearly four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi [23] was 7, now 2, less on a good day.

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Thanks for your input, All.

Submitted by Minai on Mon, 2008-03-17 08:35.

Thanks for your input, All.

Sarah, I have no way of knowing whether my doc's claims are true. That's why I wish that he would consider consultation with Dr. Stratton and/or D W. And I guess I'm not as afraid of I V therapy, having been through 3, week-long, at-home sessions of them, already, with the Solumedrol. And, with no infectionsi [6]. Are D W and Dr. Stratton in disagreement over I V treatment?

Louise, see above. I have no intentions of d/c'ing the Wheldon regime. And, am well informed about the slow-kill, long-term, oral options. My cellulitis had to be treated, immediately. Which was why I went with the cephalosporin. Yet, have to be sure that the cellulitis is gone. And, the oral Keflex is not an option due to the pseudo-relapse/die-off I was experiencing. So, maybe short-term, IV Rochephin is an option along with my continuation of the Wheldon regime.

Lexy, Thank you. I most certainly will ask my doc about this option. Yes, he did warn about the ouchies with the Rochephin IM's, as well. I wonder how much Bicillin, and how often...

I currently feel as if I am recovering from a Tinii [12] pulse.

--Minai

RRMSi [1], diagnosed 2/04. NACi [2] 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi [3] with NAC and Doxy 2/07. LDNi [4] 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USA

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No, not in disagreement [26]

Submitted by Sarah on Mon, 2008-03-17 09:09.

No, not in disagreement at all, but, and this is me speaking, not DW, once you start an iv infusion you can't pull back from it, unlike taking a pill. Also I am not saying that your Doc is lying, just maybe getting a little carried away, then you are hearing what you want to hear. If someone is stuck in a wheelchair because of MSi [22], get rid of the infection and he still has to rebuild the damaged myelini [27] or find new neural pathways. The older he is the more difficult this will be...........Sarah

An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi [23] was 7, now 2, less on a good day.

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Completed Stratton/Wheldon regime for aggressive secondary progressive MSi [22] in June 2007, after nearly four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi [23] was 7, now 2, less on a good day.

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Minai - PICC lines/ports [28]

Submitted by Daisy on Mon, 2008-03-17 09:43.

Minai -

PICCi [18] lines/ports are very common in US and are generally considered safe outside of the hospital if monitored and cared for correctly. Must be kept clean and dry and vigilant labs and thrombosis studies should be implemented. MSi [22] patients being infused with cytoxin, cancer patients with other chemo agents, etc... commonly have ports installed. All that being said - they still carry risks and inconveniences that oral agents don't. Also anaphylaxis is a little more common with IV therapy than oral.

Louise is correct - many studies seem to indicate relapse of IV treated lyme patients. IMHOi [29] it's because those patients were only treated either for 30 days with IV and then left without adequate post IV oral therapy - a traditional study design. I think what was key in Karl's story is that he got the IV at the same time hammering the bugs with oral agents and then kept on hammering with oral agents for an extended period of time post IV.

Re the wheelchair stuff - I do think it's possible that your doctor was spot on accurate with what he told you. I have personally seen this happen on more than one occassion with patients with RA. Infuse or inject someone with a monoclonal antibody to block tnf alpha and it definitely can happen. I have seen an 8 yr old in wheelchair (of several months duration) with JRA receive a single treatment and within 4 hours demonstrate dramatic improvement to the point of arising from the wheelchair and beginning to play with toys in physicians office.

Also have seen a 57 yr old male arise from wheelchair (of several months duration) to playing golf the following week post anti - tnf treatment for RA.

I think for a MS'er, not improving as desired on oral agents it's reasonable to implement IV agents.

Hope you recover from the Keflex treatment soon. Amazing that you got so much die off from the Keflex - makes me think you have more than one pathogen at work !

^{Daisy - Husband on CAPi [3] 5/07. Minoi [30], Roxyi [15], Diflucan round two 1-31, Rifampin, Bactrim DS, Prednisone, Novantrone, Doxyi [11], Azithromycin, Flagyli [7]}

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Daisy - Husband on CAPi [3] 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill

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Daisy, you are talking [31]

Submitted by Sarah on Mon, 2008-03-17 10:20.

Daisy, you are talking about mabs and RAi [32], not rocephini [15] and long standing MSi [22] when you speak of people getting up out of their wheelchair (Said he treated an elderly man with MS [22] with Rochephin, several years ago. The man was in a wheelchair, had a catheter and colostomy. Could not even talk. After the Rochephin, he could do all of these things for himself again. But, then, his elderly wife could not transport him the distance for treatment, anymore. They started seeing a local doc who prescribed a single ABXi [19] [19] for him (can't remember which one). But the man developed C-diff and was back to his previous condition, last my doc had heard.) This man might have managed to stand up but he would have sat down again pretty quickly. In my opinion, Minai is improving from her MS on oral abxi [20], the rocephin was suggested for cellulitis. She is so prone to awful reactions to anything she takes, if I was her, I wouldn't risk iv rocephin.........Sarah

An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MS in June 2007, after four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi [23] was 7, now 2, less on a good day.

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Completed Stratton/Wheldon regime for aggressive secondary progressive MSi [22] in June 2007, after nearly four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi [23] was 7, now 2, less on a good day.

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Sarah - Yes - talking about [33]

Submitted by Daisy on Mon, 2008-03-17 10:37.

Sarah -

Yes - talking about my specific experience in seeing Mabs induce miracles in RA patients not IV Rocephini [15] in longstanding MSi [22] patients. Thanks for making the difference clear! I am a little stressed today and probably not posting clearly !

I don't think the antedotal story that Minai's doctor told her is necessarily wrong though - although it could be. There are some key pieces of info missing in the story - how long the man had been in a wheelchair and how long post IV Rocephin it took for him to improve, duration of IV Rocephin etc... Could be the guy had a very active lyme infection that the IV Rocephin beat back enough that he was able to make some improvement... My husband's doctor has similar patient stories...

^{Daisy - Husband on CAPi [3] 5/07. Minoi [30], Roxy, Diflucan round two 1-31, Rifampin, Bactrim DS, Prednisone, Novantrone, Doxyi [11], Azithromycin, Flagyli [7]}

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Daisy - Husband on CAPi [3] 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill

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Daisy, What about your [34]

Submitted by Minai on Tue, 2008-03-18 08:46.

Daisy,

What about your husband? He should not be walking, either, but he is. From what you've described, it's as if he developed new neural pathways almost immediately. That's why I had asked you whether or not he had ever had spinal MRIs, thinking that maybe he had no spinal lesions that prohibit him from walking. Thanks, so much, for sharing all that you do/have.

--Minai

RRMSi [1], diagnosed 2/04. NACi [2] 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi [3] with NAC and Doxy 2/07. LDNi [4] 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USA

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This die-off that I assume

Submitted by Minai on Thu, 2008-03-20 09:33.

This die-off that I assume that I am experiencing from the Keflex is overwhelming. Can walk with difficulty, yet too weak(legs won't support me) to stand for any length of time. Am off for a pelvic ultrasound in a few hours--just hoping that I can make the journey on my own. Also have to drink much water for the procedure and hoping that I can hold it.

Am wondering how long these symptoms will last and hoping that I'll be better in the long run for it. Just as if it were a flagyli [7]/tinii [12] pulse.

--Minai

RRMSi [1], diagnosed 2/04. NACi [2] 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi [3] with NAC and Doxy 2/07. LDNi [4] 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USA

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Your foot doctor who [35]

Submitted by Sarah on Thu, 2008-03-20 11:57.

Your foot doctor who majored in microbiology said that you had got rid of the cellulitis, so since you have stopped the keflex, you should feel beter before long, I would have thought.

I hope you have phoned the officers' mess!...........Sarah

An Itinerary in Light and Shadow........... Completed Stratton/Wheldon regime for aggressive secondary progressive MSi [22] in June 2007, after four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi [23] was 7, now 2, less on a good day.

___________________________________________________________

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi [22] in June 2007, after nearly four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi [23] was 7, now 2, less on a good day.

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Well, so much for that!!!

Submitted by Minai on Thu, 2008-03-20 15:59.

Well, so much for that!!! Disaster struck. Was drinking water in the waiting room of the doctor's office. Then, asked to come back and undress. But, before I could, the urge to void took over. I tried, so hard, trekking stick and all to make it to the restroom, and nearly did. But, couldn't...soaking my velveteen jeans. I came out of the restroom and there was the doctor. He is a Georgetown professor, paralyzed from the waist down, and in a chair. I apologized, with him pointing to himself, in his chair, and telling me he thoroughly understood. Told me to reschedule, that he would do an ultrasound that didn't require me to (over)fill my bladder. It was all I could do to walk to the car. There was a strong, icy wind that was making my wet legs SOOO icy, and thus spastic. Upon arriving home, then showering and changing, his office called to tell me that they had my driver's license (had to provide ID)that I need to make another trip there, to pick it up, because they don't think that it's safe to mail. Doh!!! But, they are not open again, until Monday. Now, anywhere I dare drive between now and then, I will take a chance of being ticketed. Double doh!!!

--Minai

p.s. to Sarah...yes, I made the reservations. Hopefully, just hopefully...my husband will be home again, soon and we will be able to keep them

RRMSi [1], diagnosed 2/04. NACi [2] 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi [3] with NAC and Doxy 2/07. LDN 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USA

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Minai, It's YOUR driver's

Submitted by MacKintosh on Thu, 2008-03-20 16:34.

Minai, It's YOUR driver's license, not theirs. If you tell them to FedEx it, they have to. Meanwhile, they should fax you a copy to carry with you, if you don't already have one at home. I don't much like them already, since nobody offered to let you rinse out the jeans, dry them (even with a hand dryer in the restroom, for Pete's sake) and then inconvenienced you further by refusing to return your own driver's license to you. Insensitive clucks.

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

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Thanks, MacK, now there are

Submitted by Minai on Thu, 2008-03-20 17:10.

Thanks, MacK, now there are some ideas that never occurred to me. Except, that I can't call them, until Monday, either. You're right. I should have copies of my dr's license locked in our safe, but I don't. I just don't understand it...they handed back the referral slip from my Lyme doc that I had given them along with the license, but not the license. I guess I'll just know better next time what to expect, and plan better.

--Minai

RRMSi [1], diagnosed 2/04. NACi [2] 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi [3] with NAC and Doxy 2/07. LDNi [4] 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USA

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But you shouldn't need to [36]

Submitted by Sarah on Thu, 2008-03-20 17:52.

But you shouldn't need to do that though,should you? More management incompetence. I could tell you something outrageously funny about that, but I'd better email it to you tomorrow!...........Sarah

An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MSi [22] in June 2007, after four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi [23] was 7, now 2, less on a good day.

___________________________________________________________

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi [22] in June 2007, after nearly four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi [23] was 7, now 2, less on a good day.

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minai that is such a pain.It

Submitted by jak7ham9 on Thu, 2008-03-20 18:56.

minai that is such a pain.It is awful when you get to urge to pee!I think I have it totally beat and then every once in while surprise!! What a pita! Taking the rifamp seems to deffinately increased my tightness. It is weird they probably had your cc# they could just have fedexed to you especialy since you were obviously embarrassed and mortified!! It is weird I notice you got improvement/no progression on your mri but not so much improvement on the spasticity/walking That is how I feel as well. I always am wondering when the spasticity is going to go and so when I can walk better and completely stop the urge to pee of course BarbaraC and glutathione push for years all supplementsi [13] in protocol)IV vitaminsi [14] b1-12,C50gm,magDoxy200 10-/14/07, NACi [2] 2400Doxy200mgAzithMWF10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagyli [7] 1day 500x2 11/23/20074th pulse 2.8.081500mg 8days

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NACi [2] and glutathione push for years all supplementsi [13] in protocol)IV vitaminsi [14] b1-12,F10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagyli [7] 1day 500x2 11/23/20074th pulse 2.8.081500mg 8days 7/08 finished 10th pulse on 300 rifamp bid, doxybid 7/2008

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Hi Barbara, I am usually

Submitted by Minai on Thu, 2008-03-20 20:11.

Hi Barbara, I am usually able to keep the urge under control, except when my bladder is overfilled. I had this problem when I started the Azith, then Roxi. But, then, it went away. That is, until I took Keflex. I have theorized on and off about the painfully icy symptoms, along with spasticity. That it's caused by the die-off products. Some of which, may be cryoglobulins. I know parvovirus is. And, it is something I tested highly positive for. Here [37] is something on it. Maybe the die-off products are the reason that we are so spastic and icy, and not that we are developing new lesions? I hope so, anyway. Maybe kill off everything we are infected with, get rid of the die-off products, and then our lesions will be able to heal and we will be able to walk again, with no spasticity. I hope so, but who knows?

--Minai

RRMSi [1], diagnosed 2/04. NACi [2] 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi [3] with NAC and Doxy 2/07. LDNi [4] 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USA

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lMinai - Sorry to hear [38]

Submitted by Daisy on Thu, 2008-03-20 21:16.

lMinai -

Sorry to hear about the rough day. Hope tomorrow is better !

You handled the situation with great dignity and very well though I must say !

If you have a passport you might carry that with you until you get your drivers license back just for official ID.

^{Daisy - Husband on CAPi [3] 5/07. Minoi [30], Roxyi [15], Diflucan round two 1-31, Rifampin, Bactrim DS, Prednisone, Novantrone, Doxyi [11], Azithromycin, Flagyli [7]}

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Daisy - Husband on CAPi [3] 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill

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Thank you, Daisy.

Submitted by Minai on Thu, 2008-03-20 22:14.

Thank you, Daisy. Unfortunately, I do not have a passport. And, my military ID has recently expired, too.

I constantly send well-wishes your way, too. Can all too easily relate to most of what you are experiencing, having raised/continuing to raise a severely disabled daughter, for well over 10 years, now. But, fortunately, since starting her on CAPi [3], we are witnessing many improvements in her condition. Yes. Protect yourself in your bunker. I say this, from the perspective of caring for someone very ill, for so long, that I eventually became quite ill, myself. I just hope that you will be spared the same fate (though, I am not much of a believer of fate).

Best,

--Minai

RRMSi [1], diagnosed 2/04. NACi [2] 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAP with NAC and Doxy 2/07. LDNi [4] 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USA [39]

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Minai, sorry to hear of your

Submitted by Michèle on Fri, 2008-03-21 02:27.

Minai, sorry to hear of your catalogue of minor disasters on your visit for your ultrasound. I notice that your post is littered with emoticons some of them angry ones. Maybe what we lack in our communication with incompetence is a way expressing our anger. I'm very bad at this, but when urged by my husband to complain about some sloppy and downright inconsiderate incompetence by my bankers, I rang them up and told them I was angry about still not getting information about an account I had opened some three months back. After some 4 or 5 polite phone calls and three letters which had produced zilch, all of a sudden things are happening, I now know the accounts number, I should be receiving a statement in the post as well as an information pack about online banking and they are going to do something about misspelling the name of my card.

You and I and the rest of us too, have nothing to be ashamed of or apologetic about in situations where inconsiderate and sloppy behaviours results in distress. We should be rightfully angry...

I do hope things smooth themselves out for you in the next few days... And give them HELL on Monday, not only about the drivers licence they should have returned to you but also about aspects of the ultrasound examination that should have been considered and discussed with you.

Michèle (UK) GFAi [40]: Wheldon CAPi [3] 1st May 2006. Daily Doxyi [11], Azi MWF, metroi [7] pulse. Zoo keeper for Ella, RRMSi [1], At worse EDSSi [23] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [40]: Wheldon CAPi [3] 1st May 2006. Daily Doxyi [11], Azi MWF, metroi [7] pulse. Zoo keeper for Ella, RRMSi [1], At worse EDSSi [23] 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

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Minai-- I deffinately think

Submitted by jak7ham9 on Fri, 2008-03-21 07:07.

Minai-- I deffinately think they die off are causing inflammationi [41]. But how do we getrid of it? I tried upping the pyruvate to 6 gm but it did not seem to touch the spasticity though it does help with thcold feet. My lesions are becoming nonexistant but my spasticity is worse than ever today now that i am being religious taking rifam 300bid. I am taking magnesium too. Has anyone had any luck with reducing spasticity? I hate to beat a dead horse but I am really frustrated now. I wonder if some steroids might help maybe low dose? I need to be mobile. Even my right hand which has never been an issue a little off and is really tight and up my right arm these are really old forgotten stmptoms. Oh and I think you should send the docs office a guilt letter teling them how embarrassed you were and how they made it worse by being so unhelpful and unempathetic. Believe me I am in hotel buisness and guilt works better than anger. Barbara

push for years all supplementsi [13] in protocol)IV vitaminsi [14] b1-12,C50gm,magDoxy200 10-/14/07, NACi [2] 2400Doxy200mgAzithMWF10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagyli [7] 1day 500x2 w do we get rid of it?11/23/2007o4th pulse 2.8.081500mg 8days

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NACi [2] and glutathione push for years all supplementsi [13] in protocol)IV vitaminsi [14] b1-12,F10/29/07 roxy300,doxy200,rifampin300aziyh mwfMS flagyli [7] 1day 500x2 11/23/20074th pulse 2.8.081500mg 8days 7/08 finished 10th pulse on 300 rifamp bid, doxybid 7/2008

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Hi Michele, The emoticons

Submitted by Minai on Fri, 2008-03-21 11:36.

Hi Michele, The emoticons are so silly, one can only really use them to punctuate humour. Yes. I was initially frusturated about my experience. But just like with anything else, of the like, I had only 2 choices: I could either laugh about it, or cry about it. So, of course, chose the former. There was also, another incident or two that occurred during this visit, that I didn’t mention. One, was that I had no sooner sat down on the loo; when another patient opened the door, exposing me for the whole world to see. Can only laugh, thinking about it. And, names? The receptionist there, kept making the common mistake by repeatedly calling out for me, by my last name, as if it were my first. So, I had pretended not to hear her, until she finally got it right. Yes. Sometimes, such things as your banking issues, will not be addressed without literally “jumping up and down on someone’s desk,” as last resort. Am quoting my husband, as he’s been my greatest teacher of frustration and anger management. A military commander, he is very adept at getting problems corrected, without getting angry. In fact, he is well known and commended for it. Embarrassment, is usually more effective and more commonly used. But, am glad that your accounting issues are finally being resolved, having been given no other choice but to resort to anger. This choice was made for you by force.

My husband should be home by Monday. And, since it is a holiday, will probably send him to pick up my license. He could snatch it out of their hands with a look guaranteed to evoke embarrassment and/or apology. And, of course, should they even attempt to bill me for this office visit, I will legally dispute the charges, by simply having my husband’s JAG officer attorney write a letter to them that they are legally in the wrong.

--Minai

RRMSi [1], diagnosed 2/04. NACi [2] 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY Restarted CAPi [3] with NAC and Doxy 2/07. LDNi [4] 4/07. Stopped NAC, started Roxi, again 5/07. Now on full doses of Doxy and Roxi. NAC, again, 7/07. 1st Tinidazole Pulse, 8/11/07. USA

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