Protocol Vacations

Well, it seems somewhat unlikely that my liver enzymes have decreased enough to avoid a Protocol Vacation. I will likely get a partial report on my lab studies in the next few days.

So I am beginning to look at the possibility of being asked to cut back or even completely take a break from the protocol as my AST and ALT are in the 3-4 times the high normal range and this has been the case for almost 4 months now.

I know that folks have stopped for numbers lower than mine which are both over 140. My several past blood draws have been ever so slightly higher each time yet still slowly climbing.

I would appreciate anyone who has found themselves in this position to share how it was handled in your case.

And if you took partial doses of either what might be the minimum acceptable or if you stopped everything completely. For how long to return to acceptable baseline levels. Might 100 mg Doxyi [1] a day and NACi [2] be a compromise? Or best to quite for a time and how long was that "vacation for you?

And yes. I will be talking with my MD about this, no need to advise me on that, and I will call as soon as the results arrive in my mail in the next few days, I need to know the specifics before consulting him so that I can have an informed conversation and a shared decision.

I have been a baracuda about continuing these months, yet at some point I may be doing myself a dis-service. It is a delicate balance.

Louise CFSi [3]i [3],CPNi [4]i [4]+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai [5]i [5] +fattyEndotoxins HS PRN, Wheldon CAPi [6]i [6] 6/07,all supps, Doxyi [1] 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

Louise CFSi/ME. CPnPositive.

Submitted by Louise on Mon, 2008-02-25 15:37.

Louise CFSi [3]/ME. CPnPositive. BbPositive. Wheldon CAPi [6] began 6/24/07. Now NACi [2], Doxyi [1], Roxi, TiniPulse#4 Ended2/3/08. Cholestyramine at Bedtime for Phorphoria & liposacaride Endotoxini [9] Die-Off Experiences.

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Louise CFSi [3],CPNi [4]+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai [5] +fattyEndotoxins HS PRN, Wheldon CAPi [6] 6/07,all supps, Doxyi [1] 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

In early abxii, begun

Submitted by katman on Mon, 2008-02-25 16:52.

In early abxi [10], begun Sept., 04, when I was also on Avonex, my numbers went up - one to 147, the other comparable but don't remember the number, in early March, 05. My doctor said I must stop all abxi [11] for 1 month. I did, but kept on with supplementsi [12]. I was on Rifampin and Doxyi [1] and flagyli [13]. They were fine at the next check-up and I began abx again April 1. This happened again later, but I was a little smarter by then, stopped Avonex and everything straightened out in a week or so.

Rica PPMSi [14] EDSSi [15] 6.7 at beginning - now 2. Began CAPi [6] Sept, 2004 with Rifampin 150 mg 2xd, Doxy 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyl total 49 pulses NC USA

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Rica PPMSi [14] EDSSi [15] 6.7 at beginning - now 2. Began CAPi [6] Sept, 2004 with Rifampin 150 mg 2xd, Doxyi [1] 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli [13] total 55 pulses LDNi [16] Rifampin 8/08 again NC USA

I had to stop antibioticsi

Submitted by Janice C on Mon, 2008-02-25 17:09.

I had to stop antibioticsi [10] for a month after about six months of treatment. I continued the NACi [2]. I hope your liver returns to normal quickly. Combined Antibiotic Protocol minocycline, azithromycin, metronidazolei [13] for muscle pain, insomnia, interstitial cystitisi [17], sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.

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Combined Antibiotic Protocol minocycline, azithromycin, metronidazolei [13] for muscle pain, insomnia, interstitial cystitisi [17], sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.

I am having the same

Submitted by mycoplasma1 on Mon, 2008-02-25 17:45.

I am having the same problem and may have to stop for a month also. Best, Chris CAPi [6] since 11/06 for CFSi [3]. Cpni [4], Myco P, CMV, HHV-6 infectionsi [18]. Doxyi [1] 200mg daily, Zithromax 250mg MWF. NACi [2] 2250mg daily. All other supplementsi [12].

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CAPi [6] since 11/06 for Cpni [4], Lyme, Bartonella, Myco P, CMV, HHV-6 infectionsi [18]. Doxyi [1] 200mg daily, Zithromax 250mg MWF. NACi [2] 2250mg daily. All other supplementsi [12].

I never had mine tested [19]

Submitted by Sarah on Mon, 2008-02-25 18:50.

I never had mine tested in case they were a bit high and caused me to worry. If you palpate my liver it is perfectly normal............Sarah

An Itinerary in Light and Shadow...........Completed Stratton/Wheldon regime for aggressive secondary progressive MSi [20] in June 2007, after four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi [15] was 7, now 2, less on a good day.

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Completed Stratton/Wheldon regime for aggressive secondary progressive MSi [20] in June 2007, after nearly four years, three of which intermittent. Still slowly improving and no exacerbation since starting. EDSSi [15] was 7, now 2, less on a good day.

My Liver is not enlarged or

Submitted by Louise on Mon, 2008-02-25 20:22.

My Liver is not enlarged or unusual looking upon ultrasound exam. And no signs of stones blocking bile flow. This has been ruled out last weeks.

My undestanding from a good source is that elevations in excess of 3 times the high normal limits are where there begins to be concern of serious liver damage. Up to that point they are generally tolerated. I will definiately hear by the end of the week. What the current levels are I have had them drawn at two intstitutions within three days. Hoping to gt a least one set of results before the end of this week.

Louise

CFSi [3]/ME.CPnPositive.BbPositive.

WheldonCAPbegan6/24/07. NowNAC,Doxyi [1], Roxi, TiniPulse#4 Ended2/3/08.

Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

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Louise- Sorry to hear

Submitted by Jim K on Mon, 2008-02-25 22:06.

Louise- Sorry to hear about the elevation. I wouldn't worry too much about taking a break, your liver is more important than anything else and, if given a chance will right itself. Dr. Stratton describes Cpni [4] as a slow growing organism (in the body, not the petri dish) and that breaks when indicated are not a significant problem for progress. Most people keep on NACi [2] and some doc's have added milk thistle or Urso Forte for liver support. Take good care.

CAPi [6] for Cpn 11/04. Dx: 25yrs CFSi [3] & FMSi [21]. Protocol: 200mg Doxyi [1], 500mg MWF Azith, Tinii [22] 1000mg/day pulses; Vit D1000 units, INHi [23] 150mg, Magnascent Iodine 20 drps/day, T4 & T3

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CAPi [6] for Cpni [4] 11/04. Dx: 25yrs CFSi [3] & FMSi [21]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [22] 1000mg/day pulses; Vit D2000 units, T4 & T3

Jim, I have been on a

Submitted by Louise on Tue, 2008-02-26 03:13.

Jim, I have been on a sylimaryin combination product given to me by my MD. called T.A.P.S by Thorne Research two caps per day

Each Cap contains, 80% Silymarin 150mg, Artichoke extract (flower) Cynara scolymus 150mg, Turmeric extract (rhizome) Curcuma longa 150 mg., and Picrohiza hurroa extract (root) 4% Kutkin 150mg.

I also took several Silymarin caps later in the day 150 mg each.

So we should see if those neutoceutical botanicals had any dramatic effect.

I am more concerned about the Borellia cysts and it's form shifting capabilities, I am wanting to provide them more pulsing events to show them the door and get them out of my life!

The Hepato-Biliary Surgeon simply said that Urso Forte did not work well for gall stones as I would have to take it for the rest of my life. All this being said as I looked at the poster on the wall that was provided by that manufacturer! The news there is that there is no partial blockages seen to account for stasis as a contribution to inflamation of the liver. He'd be very willing to take out my GB of course which I have know for years. And I may just do it sometime soon. Even half and half in decaf coffee is off limits now, as well as any chicken fat based broths in soups, I have know that I have had stones and have used dietary control to avert biliary colic for the past 30 years. A liver transplant specialist may well be a good choice to have the closed procedure done by. I think that I am a good candidate for that option.

Also, I may go on to see their hepatologist depending on my lab results, they drew a lot of screening tests beyond more enzymes. Medical Records said that I should recieve my copies in 7 to 10 days so by the end of this week I may get them. I also had a complete metabolic profile drawn locally last Friday locally so that should arrive in the next day or two. Time drags when you are waiting for these sorts of results.

Louise

CFSi [3]/ME.CPnPositive.BbPositive.

WheldonCAPbegan6/24/07. NowNAC,Doxyi [1], Roxi, TiniPulse#4 Ended2/3/08.

Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

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Rica, Thanks for sharing

Submitted by Louise on Tue, 2008-02-26 18:19.

Rica, Thanks for sharing your experience that is very helpful to me. Today at the health food store Iwas picking up some Hydrolyzed Whey Protein powder (Lactose Free no artificial sweeteners processed at low temperatures, Solgar Brand, as suggested by my MD to increase glutathione production. I was going to get some Kefir (probiotic milk drink) and there is was right in front of my eyes, Organic Goats Milk. Such sychronicity I had to bring it home with me. I have never tried it before. I'll try it alone and with the whey protein powder too. could become a staple hre at my house!

Thanks again,

Louise

CFSi [3]/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi [1], Roxi, TiniPulse#4 Ended2/3/08. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

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The Mail Arrived with my

Submitted by Louise on Thu, 2008-02-28 15:03.

The Mail Arrived with my Complete metabolic profile (includes those liver enzymes) and they are on the decline. Now that I am all Ok with taking a break I will be waiting for an email from my MD as he is sure to get the results in his box today, but may not get to me until next week. The are even less than the first round that I had drawn with his supervision two months ago. Not dramatically lower but 20 to 30 point lower in the AST and ALT and 100 points down in the alk Phos. These results are from my local hospital lab. The results from the Hepato-biliary center have not arrived yet. My MD off on Fridays, so is likely to contact me early next week.

Seems that the total 600 mg of Silymarin and the other herbal extracts combined in the course of one month's time may have had this impact.

Still waiting and wondering about that enforced abxi [10] vacation, now I am not so sure that it will be required. I want to give his time to digest the total picture and think it through before calling him. I had an email regarding the Ultrasound that was positive.

So more wait and see. We all do that so well, don't we though? So I am ready to vacation or keep on trucking it is good to feel so flexible about it. I Just need to know so I can start another pulse or start that enforced vacation.

Louise

CFSi [3]/ME. CPnPositive.BbPositive.

WheldonCAPbegan6/24/07.

NowNAC,Doxyi [1], Roxi, TiniPulse#4 Ended2/3/08.

Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences. (Will start this again with next pulse.)

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Louise! Excellent news on

Submitted by Daisy on Thu, 2008-02-28 15:13.

Louise! Excellent news on the LFT's. Very excited to hear that they are down! You know - in addition to the milk thistle and nac - the Questran may have helped with this by cleaning out your gall bladder... Whatever the cause - very happy for you!

Daisy - Husband on CAPi [6] 5/07. Minoi [24], Roxy, Diflucan round two 1-31, Rifampin, Bactrim DS, Prednisone, ~~Novantrone~~, ~~Doxyi [1]~~, ~~Azith~~

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Daisy - Husband on CAPi [6] 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill

Thanks Daisy, Will see if he

Submitted by Louise on Thu, 2008-02-28 15:51.

Thanks Daisy, Will see if he is satisfied with the results. I believe that he does some IV infusions in the office so maybe there will be something else that can be added to dull down the inflamation. And yes it is good to know that the Liver function tests are not "spiraling out of control" at the moment.

Still, I need to wait before getting in the middle of another pulse which I would not want to do as it effects both the CPni [4] and the Bb(Lyme), I want to have the ABXi [10] full force to catch those Bb swimmers!

I did the Questran (cholystyramine) intensely before the December blood draw and the January draw so from that aspect I think not as likely that I can give it credit for the decline in numbers.

I have also been on 6000 IU per MD for the past month as well. Do you have any thoughts on the impact that that might contribute to the picture?

Louise

CFSi [3]/ME.CPnPositive.BbPositive.

WheldonCAPbegan6/24/07. NowNAC,Doxyi [1], Roxi, TiniPulse#4 Ended2/3/08.

Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences. (Will restart with next pulse)

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A year ago I had slightly

Submitted by doglover on Thu, 2008-02-28 20:45.

A year ago I had slightly elevated liver results. I had them tested last week before I started rifampin and they were all within normal limits. The only change I made was doubling naci [2] to 2400 mg. Linda If there is no wind..............row New Hampshire USA on CAPi [6] since 2-4-2006 for MSi [20] Currently on doxyi [1] 100mg, 2x day, azithromicin 250mg, m,w,f and 500mg flagyli [13] 3x a day for five days every three weeks.

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If there is no wind..............row New Hampshire USA on CAPi [6] since 2-4-2006 for MSi [20] Currently on rifamapin 150 mg 2x day, azithromicin 500mg, m,w,f and 100mg tinidazole 3x a day for seven days 2x a month, 3g calcium pyruvate 5 days, 50000 units vit D