D-ribose does it for me,  at least two heaped teaspoons every day, you can get it from here

http://www.muscleform.co.uk/Store/All-Products/D$9RIBOSE-ATP-Fuel [8]

Elinor ..... from England  on CAPi [3], doxyi [4]/roxi/tini  for ME/CFSi [9]/lyme borreliosis, positive Cpni [10] and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

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Elinor ..... from England  on CAPi [3], doxyi [4]/roxi/tini  for ME/CFSi [9]/lyme borreliosis, positive Cpni [10] and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Michele          

I don't mean to contradict Elinor's suggestion, it's something worth trying; however, D-Ribose hasn't helped me with Porphyriai [1] much at all.  I may not be taking as much as I could, taking only 2 grams in capsule form each day.  The best thing I've found is Glucose and even that doesn't seem consistent, it's a timing thing somehow.

With respect to the energy issue, I've had the best results with Calcium Pyruvate.  I generally take 3 grams in capsule form, as well as some caclcium ascorbate at the same time.  I take this about an hour prior to taking abxi [11].  Consequently, be aware that it may make the abxi [12] more significant in reaction...potentially.  What it may be doing is just making more RBs active, waking up the CBs, and from what I understand, reducing the endotoxini [13] load from die off reactions as a result, though I may be mistaken about that understanding.

all my best

John

RRMSi [6]/EDSSi [7] was 4.5, was 4.???, now 5 on Wheldon Protocol (naci [14], doxycycline, azithromycin, metronidazolei [5]) since 04/12/2006. Added Rifampin 2x150mg/daily on 08/19/2007. Added INHi [15] 300mg/daily on 03/17/2008.

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all my best

John

RRMSi [6]/EDSSi [7] was 4.5, 5, now 6 on Wheldon Protocol (naci [14], doxycycline, azithromycin, metronidazolei [5]) since 04/12/2006. Added Rifampin 2x150mg/daily 08/19/2007. Added INHi [15] 300mg/daily 03/17/2008 stopped 05/08

Michele, Start up dose for first several weeks is 5 Gms 3 x /day. The maintenance amount is 5 Gm 2 x / day.  Seems to me that John may not have been taking enough to make a noticeable difference. 

I tried D-Ribose in these amount before being diagnosed with CPni [10] (before CAPi [3]) and was amazed at the boost to my failing energy.  In fact I went to the FFC for evaluation because of that experience.  I hear Tietelbaum speak on a radio talk program which included specifics about D-Ribose.  I got some the next day and very shortly I was calling to book an evalutation with the Fibro and Fatigue Center nearest me.   Louise

CFSi [9]/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi [4], Roxi, FullTiniPulse#5 pulse cycle day 10 today. 2 packets Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences treatment and prevention.

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Louise-CFSi [9], CPN+/Bb+ Wheldon CAPi [3] 6/07, Cholestyramine1-2pksHSforPorphoria& Endotoxinsi [16], Doxy100daily,Roxi300BID,Tini500mgBIDpulses,VitD3-4000IU,MagnascentIodine,{S.O.D.3/QD[KAL Brand],+Pyruvate3.75G+SAM-eForEnergy}

Louise, Ella has never taken D ribose, but I note your suggestions and we will make a start with that dosage.   It will be interesting to see if it has a positive effect on her fatigue symptoms.   Glucose helps her in the short term especially with nausea and pain, but makes not much difference to the fatigue...

Elinore no sooner said than done I've ordered two tubs to see us through the first couple of months and then we can see how we go...

Michèle (UK) GFAi [2]: Wheldon CAPi [3] 1st May 2006. Daily Doxyi [4], Azi MWF, metroi [5] pulse. Zoo keeper for Ella, RRMSi [6], At worse EDSSi [7] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [2]: Wheldon CAPi [3] 1st May 2006. Daily Doxyi [4], Azi MWF, metroi [5] pulse. Zoo keeper for Ella, RRMSi [6], At worse EDSSi [7] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michele, is she taking LOTS of B12?  I suspected that was a problem for me; worth the try. 

 Mary Ann

SPMSi [19]. Weldon CAPi [3]; 3/10/08  NAC 2400, Doxy & Azith. Phased in with little to no reaction except am weaker. 

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Mary Ann

SPMSi [19]. Dx 1991. Weldon CAPi [3]; 3/08  NAC 2400, Doxy & Azith. 4th metroi [5] pulse 8/29/08 

Michele, my usual suggestion for much of my replies is Prophyria and when I look at the Reactions and Remedies page, as I have it printed out on my desk here (thanks for gathering and doing this up for all to see). 

I will be so boring as to once again, suggest Cholestyramine empirical course, for say 10 days - one packet to start at bedtime chased by an extra glass of cool clear water.   And for the constipation possibility perhaps I would take docusate it is available over the counter. Starting the docusate prior to the cholestyramine.

What is Colace (docusate)?

Docusate is a stool softener. It makes stools softer and easier to pass. (retains moisture in the stool).

Docusate is used to treat constipation due to hard stools, in painful anorectal conditions, and for people who should avoid straining during bowel movements. 

I would suggest she might establish the use of docusate first, for several days.  Take it at another time of the day away from bedtime and the cholestyramine. 

After she gets used to that she could then add in the cholestyamine.  The Docusate should be helpful and is not laxative in the true sense. 

Run the post by her and see if it makes any sense to her.  

I would do the Cholestyramine first personally prior to the D-Ribose, together the could be dramatic.  Wish I had know about Cholestyramine months earlier as I would have tried it them. 

Urelenting fatigue was my key symptom and then there was brainfog, anxiety, insomnia, exercise intolerance, itching as I look down the list.    I never thought of it as depression thankfully, as that option would likely have not lead me to this site.

LouiseCFS/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi [4], Roxi, full TiniPulse#5 pulse cycle day 10 today. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

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Louise-CFSi [9], CPN+/Bb+ Wheldon CAPi [3] 6/07, Cholestyramine1-2pksHSforPorphoria& Endotoxinsi [16], Doxy100daily,Roxi300BID,Tini500mgBIDpulses,VitD3-4000IU,MagnascentIodine,{S.O.D.3/QD[KAL Brand],+Pyruvate3.75G+SAM-eForEnergy}

Mary ann, she is taking B12, maybe not as much as she should be....

Thanks Louise I will take note of your suggestions.

Sarah, I don't think her fatigue is waking up tired as you describe, it is more due to the fact that her legs are not able to go for as long as she used to.   I think she sometimes gets up in the morning feeling that her legs are not as strong on that day as they were the previous day.   She says it fluctuates but that it definately worse now than it has been, she feels she cannot do any exercise if she needs to go to work later....

So lots of things to try.   I have suggested to her that she should take a couple of weeks off and that we should find a place where she can do an intensive physiotherapy course.   I think that may help, but finding such a place is very difficult in this country, unless you have private insurance or pots of money.... 

Michèle (UK) GFAi [2]: Wheldon CAPi [3] 1st May 2006. Daily Doxyi [4], Azi MWF, metroi [5] pulse. Zoo keeper for Ella, RRMSi [6], At worse EDSSi [7] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [2]: Wheldon CAPi [3] 1st May 2006. Daily Doxyi [4], Azi MWF, metroi [5] pulse. Zoo keeper for Ella, RRMSi [6], At worse EDSSi [7] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

I used to call that type of approach to my energy level as budgeting my energy. 

LouiseCFS/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07.

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Louise-CFSi [9], CPN+/Bb+ Wheldon CAPi [3] 6/07, Cholestyramine1-2pksHSforPorphoria& Endotoxinsi [16], Doxy100daily,Roxi300BID,Tini500mgBIDpulses,VitD3-4000IU,MagnascentIodine,{S.O.D.3/QD[KAL Brand],+Pyruvate3.75G+SAM-eForEnergy}

Michele,

I had been doing well myself for a while, but then over the past six months or so started developing significant fatigue and depression. I was getting worried that maybe my CAPi [3] was failing. However, I recently had some testing done and it turns out that I am hypothyroid and anemic. I've recently started treatment with levothyroxine and I have started getting my energy back. Thus, I would encourage you to look for any additional underlying conditions if you haven't already. They can develop even after months of being on CAP.  

Houston, TX. RRMSi [6] since 12/05. Started antibioticsi [11] 12/06.

Current Regimen: 100 mg 3x/day minocycline, 600 mg 1x/day Azithromycin, 500 mg 3x/day NACi [14], slowly pulsing with Flagyli [5]

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Houston, TX. RRMSi [6] since 12/05. Started antibioticsi [11] 12/06.

Current Regimen: 100 mg 3x/day minocycline, 600 mg 1x/day Azithromycin, 500 mg 3x/day NACi [14], slowly pulsing with Flagyli [5]

On Wheldon regime [Doxyi [4], Azith, and Flagyl]  for rrmsi [6] since October '05.  Added Amoxicillini [22] 1gm twice daily and LDNi [23] 4.5mg qhs October '07; Added Inositol[1gm] and Calcium Pyruvate[4-6gm] daily February '08, EDSSi [7] was 6.5, now 5.5.

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Began Wheldon Protocol for rrmsi [6] October '05.  Currently OFF all abxi [11] since June 26, '08 due to severe porphyriai [1]. Added LDN 4.5mg qhs October '07.  All supplementsi [24].

Ella is hypothyroid but is tested regularly and her levels are fine at the moment.   She takes tinidazole for 5 days every three weeks.   Has done for 7 months or so...  No real change to her protocol, but maybe just like me she has got what I call creeping porphyriai [1], just gradual build up...

Michèle (UK) GFAi [2]: Wheldon CAPi [3] 1st May 2006. Daily Doxyi [4], Azi MWF, metroi [5] pulse. Zoo keeper for Ella, RRMSi [6], At worse EDSSi [7] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [2]: Wheldon CAPi [3] 1st May 2006. Daily Doxyi [4], Azi MWF, metroi [5] pulse. Zoo keeper for Ella, RRMSi [6], At worse EDSSi [7] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Michele, my first reaction to Ella's fatigue was, could it be porphyric especially because she is down in spirit as well.

Perhaps it is a good time to try the cholestyramine.

I hope she bounces back soon!

CFIDSi [25]/ME 26yrs, FMSi [26], IBSi [27], EBVi [28], CMV, Cpni [10], chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [14] 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#9 750mg 5.5 day, 4-25-8

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CFIDSi [25]/ME 32 yrs, FMSi [26], IBSi [27], EBVi [28], CMV, Cpni [10], chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [14] 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#13 1240 mg X 3 days 8-7-08

 I vote for trying pyruvate combined with cholestyramine for porphyriai [1]. Dr. Stratton is using 6 grams pyruvate 1 hour before abxi [11], then another 6 grams when side effects hit (die-off, porphyria, etc). I've found it has been very useful in supporting energy throughout the day and works very well with roxy. 

CAPi [3] for Cpni [10] 11/04. Dx: 25yrs CFSi [9] & FMSi [26]. Protocol: 200mg Doxyi [4], 300mg Roxithromycin, Tinii [29] 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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CAPi [3] for Cpni [10] 11/04. Dx: 25yrs CFSi [9] & FMSi [26]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [29] 1000mg/day pulses; Vit D2000 units, T4 & T3

Michele - I agree with Jim. 

If the pyruvate and cholestryamine dont do it - try the bendadryl.

^{Daisy - Husband on CAPi [3] 5/07.   Roxyi [30], Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi [4], Azithromycin, Flagyli [5], Minoi [31]}

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

 Michele,

I realize that I am a relative new kid on the block with regard to the abxi [11] protocol but I have been living with MSi [18] for 37 years and have found one thing in particular that seems to help me feel better without fail.  It is the herb echinacea.  I take this herb in the form of a liquid extract.  The dose that I take is 1 full teaspoon in less than a quater cup of water.  I also usually squirt a little drectly into my mouth undiluted.  This can be a little harsh and shouldn't be done it you have an impaired swallow reflex as the herb seems to trigger swallowing.  I find that the herb stops my clonic muscle twitching and helps me to sleep.  Sometimes at night if one dose doesn't help me Iwill take two or three doses at intervals through out the night. Inspite of the sleep interruptions I invariably wake up feeling rested and energetic.  I know that the herb, along with being an immunei [33] modulator helps to clear toxins out of the blood.  The herb has very little toxicity if any and can be taken in large doses frequently for fighting viral infectionsi [34].  It might be worth a try for Ella if she can handle the taste.  I find the less diluted it is the better.  If you purchase an extract of echinacea it should be the root extrcted in 70% alcohol and  should cause your tongue to tingle or buzz when dropped directly into your mounth undilted. This is the test of a good echinacea extract.

Tina-MS 37 years;EDSSi [7] 4.5   1/1/08 Wheldon CAPi [3]; Azith 250mg 3 x a week; Doxyi [4] 200mg daily, NAC 2000 mg daily

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 Tina-MSi [18] 37 years;EDSSi [7] 4.5   1/1/08 Wheldon CAPi [3]; Azith 250mg 3 x a week; Doxyi [4] 200mg daily, NACi [14] 2000 mg daily, started Flagyli [5] pulse 4/14/08.

 Michele,

I realize that I am a relative new kid on the block with regard to the abxi [11] protocol but I have been living with MSi [18] for 37 years and have found one thing in particular that seems to help me feel better without fail.  It is the herb echinacea.  I take this herb in the form of a liquid extract.  The dose that I take is 1 full teaspoon in less than a quater cup of water.  I also usually squirt a little drectly into my mouth undiluted.  This can be a little harsh and shouldn't be done it you have an impaired swallow reflex as the herb seems to trigger swallowing.  I find that the herb stops my clonic muscle twitching and helps me to sleep.  Sometimes at night if one dose doesn't help me Iwill take two or three doses at intervals through out the night. Inspite of the sleep interruptions I invariably wake up feeling rested and energetic.  I know that the herb, along with being an immunei [33] modulator helps to clear toxins out of the blood.  The herb has very little toxicity if any and can be taken in large doses frequently for fighting viral infectionsi [34].  It might be worth a try for Ella if she can handle the taste.  I find the less diluted it is the better.  If you purchase an extract of echinacea it should be the root extrcted in 70% alcohol and  should cause your tongue to tingle or buzz when dropped directly into your mounth undilted. This is the test of a good echinacea extract.

Tina-MS 37 years;EDSSi [7] 4.5   1/1/08 Wheldon CAPi [3]; Azith 250mg 3 x a week; Doxyi [4] 200mg daily, NAC 2000 mg daily

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 Tina-MSi [18] 37 years;EDSSi [7] 4.5   1/1/08 Wheldon CAPi [3]; Azith 250mg 3 x a week; Doxyi [4] 200mg daily, NACi [14] 2000 mg daily, started Flagyli [5] pulse 4/14/08.

Thanks all for the suggestions... I helps to get your feedback.   I can see what the concensus is and that helps me sort out the wood from the trees.

Never thought of Echinacea, although I have some in my cupboard.   Ella would approve of that.  

So it seems like Pyruvate and cholestyramine are the first line of attack.  Maybe Benadryl at night. 

Michèle (UK) GFAi [2]: Wheldon CAPi [3] 1st May 2006. Daily Doxyi [4], Azi MWF, metroi [5] pulse. Zoo keeper for Ella, RRMSi [6], At worse EDSSi [7] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [2]: Wheldon CAPi [3] 1st May 2006. Daily Doxyi [4], Azi MWF, metroi [5] pulse. Zoo keeper for Ella, RRMSi [6], At worse EDSSi [7] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006