The Jimi Mepron Experience and Hi Ho Hi Ho it's off to Rehab We Go

On Sunday night April 6th, my husband had his first teaspoon of Mepron or should I say liquid gold. One bottle - very expensive. Thick and dark golden yellow similar to Jimi Hendrix Experience albumn cover- consistency is that of glue or thick paint. Taste - not great but it's palatable. Husband likes it better than he does the Questran.

Mepron Day 6, Saturday, April 12th - Husband returned home from watching his friend play tennis. It was chilly outside but husband was very sweaty, damp and clammy feeling. He was noticeably weaker and balance was off. He had trouble standing up from chair by himself - first in long time. A little more confused than he has been since porphyriai [1] cleared up. Improved as he rested and evening wore on.

Mepron Day 9 - Tues, April 15th noticed the sweats in late afternoon while napping. Are the sweats caused by his body detoxing Mepron or is the sweating a die off reaction from bug kill? Skin feels tacky and wax like. Husband is sleeping more lately. Earlier to bed, later to rise. Needs a nap again during day which he hasn't in a couple of months .

So far noticeable decreases in strength, balance and increases in confusion, tremor, gait not fluid and sweating.

Doctor says Herx/die off reaction generally begins after 14 days of Mepron. Today is Day 10, we are getting close.

Mepron Day 10 - no big sweats today, complaints of feeling fatigued, brief sensations of slicing electric shocks in fingertips of right hand - hasn't had that one in a long time

Mepron Day 11 - acne appears on back, zero rashes, more fatigue and noticeably more confusion, less balance, difficulty getting left leg out of car - haven't seen that one in quiet a while - Wondering - how much of this is Mepron effect and how much is loss of immunomodulatory effect from minocycline?

Mepron Day 12-14 - intermittent fatigue, more perspiration than normal when walking, sleeping quiet a bit - more at night, more naps during day, skipped one dose of Questran on Sat and paid for two days with increased porphyria - appetite still excess - packing on the pounds

Mepron Day 15 & 16 - now sleeping 12 to 13 hours at night (normal 8 to 9), awake during day for long enough to eat, then back to sleep, may be up and alert and moving for 4 hours out of 24 hour period. Hasn't slept like this since Nov/Dec 2007 time frame.

Mepron Day 19 - Apr 25, dramatically less fatigue, alert, chatty, a little confused but improved

Mepron Day 20 - somewhat confused and constant complaints of fatigue, in bed most of day - had mild headache upon awakening

No additional sweats or noticeable degradation in walking or balance. Labs on Monday and then decision with antibiotic specialist on whether to do another 3 week cycle of Mepron or switch to another agent

Husband and I went and toured the brain rehab facility yesterday. It's specifically geared towards people with brain injury and with cognitive deficits. Amazingly this place is about 20 minutes from our home. Wonderously, they can help us. Time will tell...

Facililty focuses on learning to do normal activities of daily living and self care. They had a practice kitchen for patients to learn to use kitchen tools and appliances. A driving simulation room with wall mounted driving controls. Loads of computers and simulators for all types of activities.

A gym that focuses on balance issues as well as muscle strength and stamina. Full inside and outside developmental recreation tools - putting green, basketball, badmitton, billiards, fuseball, air hockey, etc...

Therapist there seemed nice. I asked about turnover - they laughed - most of the staff and therapist have been there for over 10 years. Apparently it's a very desirable place to work.

Husband will wonderously start soon. He is now on the list to get in - 3 to 6 weeks she said - sometimes faster. We will get a call on a Wed for him to start the following Monday - so short notice and we must be ready when they call.

First couple of days, I will go with him to help therapists get acclimated to him quickly. After that I will be dropping him off at 8:30 AM with lunch box in hand and they will escort him to and from classes and rehab activities until he is able to find his way from place to place. He is to be picked up after 2 pm. What they do is different than normal PT etc..., they focus all therapy on improving cognitive function. Patient age range seemed yesterday to be 15 to 60.

My plan is to start at this place and then progress from there depending on how my husband responds and what I learn from my research time deep in the fascinating and cutting edge world of neuroplasticity.

General - A momentous occassion occurred recently. My husband is off steriods. I have plenty available incase he needs a short burst but I think a lot of what I attributed to die-off and popped him with steriods for was porphyria. Since Questran - it's a whole new world. I say this over and over - the more I know - the less I know.

Also, he is recognizing numbers - a little. So I went to Target and bought him a $20 Coleman digital camping style watch. Far cry from my husband's real watch but he seems to be curious at looking at it and has read some of the numbers from it.

Plan to also write in permanent marker on the backs and palms of his hands the words LEFT and RIGHT to help that begin to sink in more. When I am driving him someplace familiar - I have him tell me where to turn at each intersection. He is very good at this.

Finally, we have started by accident a little game. We take things that happen and turn them into a story. Then instead of me repeating the story over and over to him to the point I want to scream - I ask him questions and he tells me the story instead. It's wierd but it gives him the ability to communicate and to express thoughts and observations. He has been very chatty lately - seems to crave communication and interaction.

I view it as good...although at times in communicating with my husband I feel like a parent who has been asked for the 45th time in the past hour - Are we there yet?

Daisy - Husband on CAPi [2]i [2] 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill

Daisy that 'view it as good'

Submitted by Elinor on Wed, 2008-04-16 10:47.

Daisy that 'view it as good' is such an understatement you almost sound like one of us (English, that is) it's fantastic!

Elinor ..... from England on CAPi [2], doxyi [3]/roxi/tini for ME/CFSi [4]/lyme borreliosis, positive Cpni [5] and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

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Elinor ..... from England on CAPi [2], doxyi [3]/roxi/tini for ME/CFSi [4]/lyme borreliosis, positive Cpni [5] and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Daisy that 'view it as good'

Submitted by Elinor on Wed, 2008-04-16 10:47.

Daisy that 'view it as good' is such an understatement you almost sound like one of us (English, that is) it's fantastic!

Elinor ..... from England on CAPi [2], doxyi [3]/roxi/tini for ME/CFSi [4]/lyme borreliosis, positive Cpni [5] and borrelia. Started Aug05, stopped Jan06, started again Sept 06.

Daisy, So that's what's

Submitted by cypriane on Wed, 2008-04-16 11:32.

Daisy, So that's what's playing in your circus (you can skip answering that part of my PM). The progressing cognitive abilities of navigation, recall, verbalization, and curiosity are so encouraging! Waiting for his time at Emory is going to be tough, but the delay might be a good thing by allowing him to get past the Mepron fallout. This is giving me a quivery excitement for you two. Can't wait to see more photos of him doing new things in the future.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [6]). CAPi [2] since August 06, Cpni [5], Mpn, B. burgdorferi, systemic candidiasis, EBVi [7], CMV & other herpes family viral infectionsi [8], elevated heavy metals, gluten+casein sensitivity.

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Daisy, who will be teaching

Submitted by katman on Wed, 2008-04-16 11:42.

Daisy, who will be teaching whom? My guess is that they could learn about their specialities from you. Or at least there should be a long and serious consultation. My hat is off to you - you are incredible, and learn from everything whether tied down or on your feet running.

Rica PPMSi [9] EDSSi [10] 6.7 at beginning - now 2. Began CAPi [2] Sept, 2004 with Rifampin 150 mg 2xd, Doxyi [3] 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli [11] total 50 pulses NC USA

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Elinor - I will always be a

Submitted by Daisy on Wed, 2008-04-16 12:36.

Elinor - I will always be a yank and externalize on many things but perhaps a bit of the British stiff upper is rubbing off.

^{Daisy - Husband on CAPi [2] 5/07. Roxyi [13], Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi [3], Azithromycin, Flagyli [11], Minoi [14]}

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Daisy - Husband on CAPi [2] 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill

Joyce - Circus - funny and

Submitted by Daisy on Wed, 2008-04-16 12:44.

Joyce - Circus - funny and rings true - In ring one we have Mepron, in ring two we have rehab, in ring 3 we have day to day calamity.

Actually this amazing rehab program isn't part of Emory. Emory has a stroke program but nothing like this cool little jewel (wonderously). It's part of a different hospital system.

On the waiting - actually - I knew about the 3 to 6 week wait for the program since October so it's part of my diabolical master plan.

Figure by the time the worst of the Mepron herx is over it will be time ! The only thing I haven't worked out is the addition of Tindamax and that die off reaction.

Hope things are better in your camp !

^{Daisy - Husband on CAPi [2] 5/07. Roxyi [13], Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi [3], Azithromycin, Flagyli [11], Minoi [14]}

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Daisy - Husband on CAPi [2] 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill

Daisy, this is great news &

Submitted by ruthless1 on Wed, 2008-04-16 17:29.

Daisy, this is great news & right under your nose all this time. This is the appropriate time for discovery! It is great for husband & it is a daily break for you too! How great is that!

Rica is right about who is teaching who!

God is great!

CFIDSi [15]/ME 25yrs, FMSi [16], IBSi [17], EBVi [7], Cpni [5], (insomnia - melatonini [18], GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi [19] 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse8 750mg 4day,375X1 3-24-8

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CFIDSi [15]/ME 32 yrs, FMSi [16], ~~IBSi [17]~~, EBVi [7], CMV, Cpni [5], H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi [20] +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli [11]/day-3 days

Daisy, I continue to be

Submitted by Louise on Wed, 2008-04-16 22:10.

Daisy, I continue to be amazed at your ingenuity and fully enjoy reading your process and insights. I will be looking for your progress reports.

So glad that you have found a way to allow him to practice communication, what a great idea. Louise

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

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

What an amazing resource you

Submitted by Michèle on Thu, 2008-04-17 03:20.

What an amazing resource you found. It might even give you a bit of daily time to yourself as well as help him forward on his recovery.... Ingenious story telling exercise...

Michèle (UK) GFAi [21]: Wheldon CAPi [2] 1st May 2006. Daily Doxyi [3], Azi MWF, metroi [11] pulse. Zoo keeper for Ella, RRMSi [22], At worse EDSSi [10] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [21]: Wheldon CAPi [2] 1st May 2006. Daily Doxyi [3], Azi MWF, metroi [11] pulse. Zoo keeper for Ella, RRMSi [22], At worse EDSSi [10] 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

Daisy, If I am counting

Submitted by Louise on Mon, 2008-04-21 14:54.

Daisy, If I am counting correctly today is Mepron day 15. How are the two of you doing? Is the rehab working out for you husband?

Louise

CFSi [4]/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi [3], Roxi, TiniPulse#5 day 2 in progress.

Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

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Daisy, As you know many of [23]

Submitted by NellyP on Tue, 2008-04-22 10:57.

Daisy, As you know many of us, Lyme patients, have taken Mepron (atovaquone) to treat Babesia (or something else!). I had the most amazing reactions on the atovaquone. Brain frying, head burning, heat radiating so much I had to wear frozen peas on my head. I also became an emotional wreck, cried buckets of very thick tears, paced my appartment from room to room wanting to throw myself out of the windows (luckily husband wouldn't let me!). In short it was b....y hard. I took months' worth of the liquid gold, but initially I had to go very slowly, as I could not tolerate a quarter of a dose (half the content of the little spoon). In my case, it wasn't the atovaquone specifically, it was all the treatments I tried which are meant to have an effect on protozoans. Lariam (mefloquine was as bad as atovaquone, artemisinin might even have been the worst of them all). So good luck to you both. I know you are keeping an extremely close watch on your husband, I think one needs to be watched over when taking atovaquone, mefloquine etc. Even somebody who does not have the same problems as your husband can turn very weird when brain is infected and the "liquid gold" hits in there. BTW: I am still taking lariam and it doesn't make me crazy anymore, well no crazier than I normally am, anyway:) I'd like to stop but my heart symptoms return if I am off it for more than a few weeks Nelly (France-neuroLyme and ????)

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Nelly (France-neuroLyme and ????)

Louise - Thanks for

Submitted by Daisy on Wed, 2008-04-23 18:04.

Louise - Thanks for checking in !

Just posted an update to the Mepron saga.

Re rehab - thanks for asking and remembering us1

Last week the intake coordinator told me to expect a 3 to 6 week wait to get my husband in the program. So I took him out of town.

Murphy's law - the coordinator called me this week on Monday and asked if he could be there the next day to start. Long story short - we were too far away so he will wonderously start next week.

Not sure how to deal with this new extreme fatigue ...

^{Daisy - Husband on CAPi [2] 5/07. Roxyi [13], Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi [3], Azithromycin, Flagyli [11], Minoi [14]}

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Daisy - Husband on CAPi [2] 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill

Nelly - Thanks for sharing [24]

Submitted by Daisy on Wed, 2008-04-23 18:08.

Nelly -

Thanks for sharing the benefit of your experience with Mepron. I have been braced for all sorts of wierd stuff from my husband taking it but so far we are day 15 of two full tsps per day and the worst has been profound fatigue the past couple of days.

Guess his doctor will decide if he will take it another 3 weeks - reminds me - I should call him tomorrow.

Interestingly - I trialed my husband for a few days last year on Artemenisin - nothing - trialed myself at the same time - wierd response - makes me think perhaps I have something with which to deal too.

^{Daisy - Husband on CAPi [2] 5/07. Roxyi [13], Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi [3], Azithromycin, Flagyli [11], Minoi [14]}

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Daisy - Husband on CAPi [2] 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill

Daisy, I recall that when I

Submitted by Louise on Wed, 2008-04-23 22:19.

Daisy, I recall that when I started Doxyi [3] at 400 mg per day it hit me hard as it is a kill level dose and for several weeks all I could do was eat, flush and sleep. So perhaps increased porphoria or LPSi [25] endotoxins causing the fatigue? I know it is my answer to everything it seems. I guess that you are doing what you can for it if that is the case.

Have you been following his body temperature at all?

I see your concern that he may not be awake enough to go to rehab. How long is the course of Mepron planned to last?

Looking at your signature the one year mark is almost here.

I hope you enjoyed some of your time away at least.

LouiseCFS/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxy, Roxi, Tinii [26] Pulse# 5 day 4 in process. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

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Louise - Thanks for this

Submitted by Daisy on Sun, 2008-04-27 00:52.

Louise - Thanks for this post! You once again pointed me in a potentially good direction. I did check my husband's body temp and - tada - it was suddenly low again - ENDOTOXINi [27].

That led to the research on Benadryl and Dramamine and our new experiment!

^{Daisy - Husband on CAPi [2] 5/07. Roxyi [13], Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi [3], Azithromycin, Flagyli [11], Minoi [14]}

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Daisy - Husband on CAPi [2] 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill

Daisy, is it Dramamine I or

Submitted by Louise on Sun, 2008-04-27 16:45.

Daisy, is it Dramamine I or Dramamine II. I believe that I asked this in another thread but... And could you share the dosing information that was the basis of the research if any. I have not read the article I must admit. Louise

CFSi [4]/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi [3], Roxi, TiniPulse#5 day 8 in post pulse phase. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

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Yikes ! Sorry missed the

Submitted by Daisy on Sun, 2008-04-27 18:20.

Yikes ! Sorry missed the question! It's Dramamine I.

Dose - Hard to say? The article gives mg/kg for rats when given LPS80. Not really possible to say what that translates to for humans for many reasons.

For my husband decided to start with Benadryl ... no particular reason just picked that one first.

Interesting result today with Benadryl.

Today at 9 AM I gave Rifampin 600mg.

At 10 AM Roxyi [13] 300mg, Bactrim DS, etc...

At 10:30 AM Breakfast plus Mepron.

By 11:30 Am husband began complaining of fatigue. Decided to experiment and gave him a 25mg Benadryl - even though middle of the day. He slept for maybe 30 minutes and then has been up ever since feeling pretty good. No more complaints of fatigue. Hmmmm?

Must be repeatable!

^{Daisy - Husband on CAPi [2] 5/07. Roxy, Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi [3], Azithromycin, Flagyli [11], Minoi [14]}

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Daisy - Husband on CAPi [2] 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill

Thanks Daisy, That is what I

Submitted by Louise on Mon, 2008-04-28 06:29.

Thanks Daisy, That is what I thought but it is good to clarify and could be confused at the store when picing it up. Also can purchase OTC as benedryl Alergy Relief. Which I tried one 25 mg capi [2] an hour before bedtime for sleep mainly, and an hour before Cholestyramine to avoid absorption by that dose. So to get on with the comment, I awoke after 5 hours and went back to sleep after a seriously needed trip to the bathroom and slept 2 more hours. Must try this for a week and see if it is as effective for me as 0.5 mg of Klonopin at bedtime to prevent the mid sleep cycle insomnia. it would be good to have another available option. The Klonopin has caused no problem with the once a day at bedtime for sleep disturbances but I think my MD is a tad resistant to RX. Will see next week when we meet.

Will be looking for more posting regarding your benedry fatigue relief experiment. I may try it the next time I am fatigued (to the point of non productiviity and cranky) combined with a short nap and see if it helps. These times are increasingly rare but do happen occasionally for me. And they are always frustrating.

Louise

CFSi [4]/ME.

CPnPositive.BbPositive.

WheldonCAPbegan6/24/07. NowNAC,Doxyi [3], Roxi,

Full Tinii [26] Pulse #5 day 9 post pulse cycle now, doing Ok at present. Also Taking 2 packets Cholestyramine at Bedtime for Phorphoria & liposacaride Endotoxini [27] Die-Off Experiences and during pulse as preventative approach started day 5 after last Tini dose will continue to maximum of 10 days on Cholystramine. Using this intermittently for post pulse relief and prevention.

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Daisy , On the Lyme board,

Submitted by MacKintosh on Tue, 2008-05-06 12:38.

Daisy , On the Lyme board, they're talking about how mepron reduces the efficacy of doxyi [3] about forty percent. Is this true? Here's hoping rehab is going well for you...

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

Mac - Not sure about the [28]

Submitted by Daisy on Tue, 2008-05-06 14:06.

Mac -

Not sure about the Doxyi [3] interaction since my husband isn't currently on Doxy or Minoi [14] but Rifampin is reported to lower the efficacy of Mepron by as much as 40% and so I am spacing them apart. Of course Rifampin interacts with dang near bloody everything lowering the efficacy of most.

My husband's doctor has prescribed another 3 weeks of Mepron but I haven't started it yet - we needed to catch up on the porphyriai [1] and for my husband to get a good start in his daily full time rehab program. The Mepron made him extremely fatigued. Not sure how I am going to handle this one yet. It'll come to me though.

^{Daisy - Husband on CAPi [2] 5/07. Roxyi [13], Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxy, Azithromycin, Flagyli [11], Mino}

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Daisy - Husband on CAPi [2] 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill

Hi Daisy, Do you have start

Submitted by Louise on Wed, 2008-05-07 07:50.

Hi Daisy, Do you have start date for that fabulous Rehab program? I can see that is is important to get him started one it, there are always trade- offs.

Louise

CFSi [4]/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi [3], Roxi, full TiniPulses. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

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Louise - You are always [29]

Submitted by Daisy on Wed, 2008-05-07 09:21.

Louise -

You are always so kind to check in !

My husband started brain rehab program last week on April 29th. So far I haven't seen any major improvement but he does seem to enjoy going. He has also been a good deal more engaged in what's going on around him.

They must push him pretty hard as he comes home completely exhausted and sleeps for two to three hours. He has also been complaining of some mild headaches at night. Who knows reason...

Still don't feel like I have his porphyriai [1] completely under control despite lots of Smarties, complex starchy foods and double dose Questran with bile trigger. He still gets ravenous in the afternoon and very irritable if I don't feed him immediately. His inflammationi [30] personality is vastly better but I don't think the porphyria is adequately checked until the extreme hunger stops.

He gets lunch at school at 11:30 AM, substantial snack (1/2 sandwich plus bag of chips) and Questran at 2PM when I pick him up, then by 4:30 he's hungry again and by 5pm he's cranky ravenous. He's been packing on the pounds - maybe 30 to 35 lbs just since November. The glucose and all the carbs are a very good way to gain a lot of weight quickly.

I have experimented a little with cimetidine but on whole I am a bit afraid of what it does to the P450 and of my husband becoming toxic from all the other meds he's taking. His labs from last week showed all liver function tests in normal range.

Still looking for better way to quell the porphyria monster.

Haven't started 2nd round of Mepron yet since it caused so much fatigue and I am trying to give my husband a chance to acclimate to brain rehab program.

^{Daisy - Husband on CAPi [2] 5/07. Roxyi [13], Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi [3], Azithromycin, Flagyli [11], Minoi [14]}

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Daisy - Husband on CAPi [2] 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill

Hi Daisy, Between my

Submitted by Louise on Sun, 2008-05-11 21:43.

Hi Daisy, Between my birthday this past Friday and all the posting activity on the site I am a bit behind in finding your reply. Sounds wonderful that he is seemingly enjoying the program.

Headaches are on that long list of porphoria symptom and low blood sugar symptom and headaches were there for me when I was killing of bacteria last summer with double dose doxyi [3]. And during pulses, the event signals to me tie to start cholystyramine.

So here are my mental wanderings in response to your post. I read your post this afternoon. And I have been letting it set abit before answering. I know that some folks have luck with complex carbohydrates however. It is clear that he is getting much to many with putting on the poundage, obesity is not the answer.

I never went for the upping my complex carbos. I had gotten off of them in 2000 and was doing the 40% Carb, 30% Protein, 30% fat approach. 5 meals per day, 3 full meals to a max of 500 cals and 2 snacks of smaller size.

However I did add glucose and 7 up(potassium based) in small amounts and this combo made a big difference but there was a balance and I used small amounts.

My learning revealed that to many carbs stimulates insulin production and drives Blood sugar down after a brief rise. His weight gain make me wonder if he is moving towards type 2 adult onset diabetes or the precursor insulin resistance on top of everything. Ravenous appetite is a sign of this too.

I know who wants to think of learning yet another system and controling someone elses life any more than you already need to. And I may be full of bull here of course! I almost feel like wiping out this reply and closing the computer because this suggestion if followed brings more complexity to the situation, at least in the short term! But I'll be brave and let it stand.

I have been trying for years (without knowing it managing my CPni [5]) to deal with my energy lack by working with blood sugar and supplementsi [20]. I was religiously sugarfree for years. With emphasis on complex carbohydrates and wheat and gluten free. So some 7 up and glucose tabs and smarties are a real pardigm shift for me ! What has surprised me the most is that I can now after the past year of treatment tolerate more of these things than I could have for the past 30+ years without energy crashing.

I'm getting tired so I will try and be brief and suggest that you might want to consider cutting back on the starchy carbs, increasing the low glycemic foods and increase protein and good fats and oils. If you look back on some of my early posts I seem to recall talking about food. You will also see how less clear I was I think.

If you want specific resources please ask. Sometimes I feel like a broken record and know that food is one of those topics that is garanteed to get a rise and often diagreement. Over the year I have learned to talk less about it until I am sure that someone is really interested in my perspective.

Again, I are really glad for you that you are getting some free blocks of time while he is at rehab.

Louise

CFSi [4]/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxy, Roxi, Full TiniPulses. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

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Louise - As always thanks

Submitted by Daisy on Mon, 2008-05-12 17:34.

Louise - As always thanks for taking the time to give me a new perspective! Your comments often engender my thinking of things differently and are definitely appreciated !

I have been really worried about my husband's escalating weight and the potential for adult onset diabetes - especially given all of his prednisone consumption.

My husband didn't eat any refined carbohydrates for several years but with the advent of his severe decline in the fall I begin to give him some treats - bread, pasta, some sweets because - well quiet frankly I thought he might be dying and I wanted his last days to be pleasant.

Sometimes I wonder if his excessive appetite isn't from some brain damage. That's definitely a possibility as he frequently wolfs his food down as if he is ravenous even when he has just eaten. His appetite seems normal at breakfast but then escalates throughout the day culminating in ravenous behavior around 5 pm each day. Lately I have been giving him 15 grain whole wheat bread to see if I can dull it a little before he eats his dinner.

I may try to gradually reduce his starchy carbs and see what happens. It's a good suggestion.

^{Daisy - Husband on CAPi [2] 5/07. Roxyi [13], Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi [3], Azithromycin, Flagyli [11], Minoi [14]}

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Daisy - Husband on CAPi [2] 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill

Daisy, Please let us know

Submitted by Louise on Mon, 2008-05-12 21:05.

Daisy, Please let us know how it goes if you begin to cut back on the starchy carbs. I fully understand how easy it happens and the several reasons, including porphoria treatment that recommends carbs. The brain operates on two sources of energy, glucose and in times of fasting ketones (or some form of such). And when the brain is low on glucose and the body is changing from glucose metabolism to fat based metabolism the urge to eat is so strong and the brain signals for energy as if it were going to die and literally it needs a supply of energy urgently when the blood glucose declines. From my understanding this is why will power in dieting is worthless as a strategy. You are killing much bacteria in his case quickly and he is doing lots of physical activity God bless him, by afternoon the crash comes.

I would think about a heavy breakfast cheese omlet and even some bacon or sausage with FAT, may give him more staying power that could last through afternoon. Not large quantities but say two pieces of fatty meat and cheese with the eggs or egg whites. It will "stick to his ribs" maybe enough to quench the strong urges for food in the afternoon. Snacks more protein based with fat and small amount of carbo. make it a several day experiment. It may take a week or two to get the insulin levels down in a more moderate level.

Well anyway something more to ponder

Louise

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Daisy- by my own

Submitted by Jim K on Tue, 2008-05-13 13:32.

Daisy- by my own experience I wouldn't expect such complete control of the porphyriai [1] symptoms for a while. It took me at least 2.5 years on the CAPi [2] before the need to use glucose to counter the ravenous hunger began to significanly wane. I would say that it has been only in the last 10 months that I've noticed virtually no need for Smarties: need is not the same as desire, mind you! Of course, my protocol was not as aggressive as your husband's and, as we say, your mileage may vary! So, I would say that you are controlling his porphyria quite well, you just aren't eliminating it yet.

CAP for Cpni [5] 11/04. Dx: 25yrs CFSi [4] & FMSi [16]. Protocol: 200mg Doxyi [3], 300mg Roxithromycin, Tinii [26] 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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CAPi [2] for Cpni [5] 11/04. Dx: 25yrs CFSi [4] & FMSi [16]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [26] 1000mg/day pulses; Vit D2000 units, T4 & T3