Wiggy, I can understand this fog. I sent my 7 yr old to school in his pjs because I thought it was pajama day but it was not until the next week. oh oh. kc dx msi [4] 1996. started capi [8] 10/05. Started with tinii [9] pulses switched to flagyli [2] pulses. Now almost on continous 500mg flagyl but do need breaks. On minoi [10] 100mg/day biaxin 1000mg day and NACi [11] 600mg. ldni [6] 2.0mg.

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dx msi [4] 1996. started capi [8] 10/05. Started with tinii [9] pulses switched to flagyli [2] pulses. Now almost on continous 500mg flagyl but do need breaks. On minoi [10] 100mg/day biaxin 1000mg day and NACi [11] 600mg. ldni [6] 2.0mg.

kc, I am not use to this much fog these days - usually I keep the schedule together. I hope it gets better quickly. I did ask a friend to pull her out of my car due to rain at soccer tonight and they told me to go home - they will drop her off. The good news is when I am lying in bed and think "bend knees" - I have been able to bend my knees. My husband was having to bend them for the last several months - they would be stuck in straight mode. On Wheldon protocol for MSi [4] since April, 2006.  doxyi [5] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [2] Pulses start end Sept., LDNi [6] 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.

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On Wheldon protocol for MSi [4] since April, 2006.  doxyi [5] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [2] Pulses start end Sept., LDNi [6] 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma

Wiggy, bravo for the ability to bed your knees in bed. Do you use a bolster pillow some of the time?  Are you taking prophoria fo g measures?   Also I stlll live by my appointment calender book. Always look before comitting to anything and write down all dates and appts., have for years, have had Cpni [13] for years!

Best regards, Louise USA.CFSi [14].CPn Positive.BbPositive.WheldonCAP6/24/07.NACi [11],Doxyi [5],Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi [15]. 

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Louise  CFSi [14],CPNi [13]+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai [16] +fattyEndotoxins HS PRN, Wheldon CAPi [8] 6/07,all supps, Doxyi [5] 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

Louise, I do not know what a bolster pillow is but I am very happy my legs are bending these days. I think I am taking porphoria measures - is cholestyramine a script? Maybe I should ask my doctor. The problem is fitting a pulse in before school is out for summer and all the year end stuff is piling up. I can't keep up. On Wheldon protocol for MSi [4] since April, 2006.  doxyi [5] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [2] Pulses start end Sept., LDNi [6] 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.

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On Wheldon protocol for MSi [4] since April, 2006.  doxyi [5] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [2] Pulses start end Sept., LDNi [6] 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma

Wiggy, it is a pillow that is hot dog shaped, which is used under the knees to support the bend.  It is a comfort measure. Louise USA.CFSi [14].CPn Positive.BbPositive.WheldonCAP6/24/07.NACi [11],Doxyi [5],Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi [15]. 

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Louise  CFSi [14],CPNi [13]+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai [16] +fattyEndotoxins HS PRN, Wheldon CAPi [8] 6/07,all supps, Doxyi [5] 200QD, Roxi 300BID, Tinidazole 500 BIDx20day Pulses, VitD3-10,000IU,Iodoral25mg,SAM-e100mgQD+B-vits, Pyruvate3.75Gm at 1PM

Sorry you are in the wars.   I think Cholestyramine is a prescription medication, it is in this country.   Hope you recover soon.

Michèle (UK) GFAi [18]: Wheldon CAPi [8] 1st May 2006. Daily Doxyi [5], Azi MWF, metroi [2] pulse. Zoo keeper for Ella, RRMSi [19], At worse EDSSi [20] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [18]: Wheldon CAPi [8] 1st May 2006. Daily Doxyi [5], Azi MWF, metroi [2] pulse. Zoo keeper for Ella, RRMSi [19], At worse EDSSi [20] 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

wiggy,  Yes, cholestyramine is a prescription med.  Using a double-dose of it in the middle of the night plus glucose before meals plus Benadryl in the evening have made a huge difference for Steve.  Charcoal just didn't do the job for his porphyriai [16].  He was in such good shape late last week and over the weekend, we tried cutting back, thinking the porphyria had waned.  Big mistake!  Please try it---if you/re porphyric, it may take a while to get it under control.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [21]).  CAPi [8] since August 06, Cpni [13], Mpn, B. burgdorferi, systemic candidiasis, EBVi [22], CMV & other herpes family viral infectionsi [23], elevated heavy metals, gluten+casein sensitivity. 

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [21]).  CAPi [8] since August 06, Cpni [13], Mpn, B. burgdorferi, systemic candidiasis, EBVi [22], CMV & other herpes family viral infectionsi [23], elevated heavy metals, gluten+casein sensitivity. 

^" if you/re porphyric, it may take a while to get it under control."

Joyce - Amen to that sister!

^{Daisy - Husband on CAPi [8] 5/07.   Roxithromycin, Minocycline, Rifampin, Bactrim DS, Mepron, Prednisone, Novantrone, Doxyi [5], Azithromycin, Flagyli [2], Diflucan}

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Daisy - Husband on CAPi [8] 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

Thanks Michele, Joyce and Daisy, I will try to get some cholestyramine at my Dr. Appt., I am taking Glucose but haven't tried Benadryl yet but will add that in also. I also gave up on the charcoal - couldn't tell a difference. On Wheldon protocol for MSi [4] since April, 2006.  doxyi [5] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [2] Pulses start end Sept., LDN 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.

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On Wheldon protocol for MSi [4] since April, 2006.  doxyi [5] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [2] Pulses start end Sept., LDNi [6] 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma

wiggy,  The Benadryl is not for porphyriai [16], but for Borrelia heat shock proteini [24] that might be getting dumped when the cystic form is killed (by flagyli [2])...in the event that you have Lyme.  It's still unknown to us whether or not it helps with Cpni [13] heat shock protein (by "us" I mean those of us who have tried it). 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [21]).  CAPi [8] since August 06, Cpn, Mpn, B. burgdorferi, systemic candidiasis, EBVi [22], CMV & other herpes family viral infectionsi [23], elevated heavy metals, gluten+casein sensitivity. 

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [21]).  CAPi [8] since August 06, Cpni [13], Mpn, B. burgdorferi, systemic candidiasis, EBVi [22], CMV & other herpes family viral infectionsi [23], elevated heavy metals, gluten+casein sensitivity. 

Hi All - My best guess about the Benadryl is that it works to relieve endotoxini [25] symptoms from bacterial die off and subsquent release of LPSi [26]. 

 In theory it might work for any gram negative bacteria generating LPS endotoxin reactions be it Salmonella, CPNi [13], Borrelia, Mycoplasma, etc... 

For my husband, we tried Benadryl when he had low body temperature and fatigue which seemed to indicate an endotoxin response and it actually worked really well  - just one 25mg Benadryl.  Some pretty intense fatigue and a body temperature of 96.9 improved in about 2 hours with no other endotoxin measures. 

Joyce - I haven't seen anything about Bendaryl and different uses in Lyme HSPi [24].  If you have something good would you PM me with it?

^{Daisy - Husband on CAPi [8] 5/07.   Roxithromycin, Minocycline, Rifampin, Bactrim DS, Mepron, Prednisone, Novantrone, Doxyi [5], Azithromycin, Flagyli [2], Diflucan}

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Daisy - Husband on CAPi [8] 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

Daisy,  I just looked back at your original post on this subject [27], and I can only conclude that I've either "mis-remembered" by inadvertently merging ideas, or perhaps I took off on a googling tangent and found something that's now lost in cyberspace.  This is a good demonstration of the value of linking back to the source.  Thanks for straightening me out on Benadryl.  Maybe in the future I should play it safe by using terms like "good stuff" and "bad stuff."

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [21]).  CAPi [8] since August 06, Cpni [13], Mpn, B. burgdorferi, systemic candidiasis, EBVi [22], CMV & other herpes family viral infectionsi [23], elevated heavy metals, gluten+casein sensitivity. 

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [21]).  CAPi [8] since August 06, Cpni [13], Mpn, B. burgdorferi, systemic candidiasis, EBVi [22], CMV & other herpes family viral infectionsi [23], elevated heavy metals, gluten+casein sensitivity. 

I believe the recommended dose of calcium pyruvate is 6 gram. If I remember correctly in Jims blog about his experience with the pyruvate was that he did not get much benefit from the 4 grams, but did when he increased it to the recommended 6 grams. but you may want to PM him to confirm this..

Mphs, TN. CFSi [14], hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80,. right arm neuropathy. + cpni [13], myco, EBVi [22], CMV. NACi [11] 4000mg, doxyi [5] 100-2xday, azith 250 m/w/f/sun, progesterone, estriol, synthroid, pulse flagyli [2], tinii [9]<

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Mphs, TN. CFSi [14], hypoT (Hashi), adrenal fatigue, 37 w/hormones of 80, right arm neuropathy. + cpni [13], myco, EBVi [22], CMV. Capi [8] began in 6/07. NACi [11] 2400mg, doxyi [5] 100-bid, biaxin 500mg bid since 7/08, progesterone, synthroid, flagyli [2] pulses

Sharon, I think you are right on this. I was taking 1 gram, read Jim's post and up it to 4 so I should go to 6. I just ordered a new type that comes in 1 gram tablet so I will only have to take 6 pills instead of 12. I did feel it was helping at 4 - but was slammed after my pulse which isn't unusual for me. I will continue with 6 once I recover from the pulse and I am slowly recovering here. On Wheldon protocol for MSi [4] since April, 2006.  doxyi [5] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [2] Pulses start end Sept., LDNi [6] 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.

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On Wheldon protocol for MSi [4] since April, 2006.  doxyi [5] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [2] Pulses start end Sept., LDNi [6] 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma

 Wiggy- you are quite intrepid and I admire you much for this. Let us know how the 6grams works for you. I think it's necessary to get the full benefit. You may find your next pulse easier.

In our sometimes black humor way, I'm tempted to call Joyce and Daisy "the Porphyriai [16] Sisters" for their hard won expertise. Kind of like those dark accolade nick-names like the Dirty Dozen, Hells Angels, etc. Our involuntary experts, in sisterhood! 

CAPi [8] for Cpni [13] 11/04. Dx: 25yrs CFSi [14] & FMSi [29]. Currently: 300mg BID Roxithromycin, Bactrim DS 2x/day, Tinii [9] 1000mg/day pulses; Vit D2000 units, T4 & T3

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CAPi [8] for Cpni [13] 11/04. Dx: 25yrs CFSi [14] & FMSi [29]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [9] 1000mg/day pulses; Vit D2000 units, T4 & T3

Jim, I appreciate you posting your pryuvate experience. I have been doing this long enough to know I need to better handle the flagyli [2] aftermath if possible. I am willing to try anything to make the pulse reactions easier. I am hoping the 6 grams makes a difference. Those "porphyriai [16] sisters" are great - explain in detail what needs to be done for those of us under the influence and "in the fog". They are always helping even though we all know they have their hands full. Thanks sisters!!! On Wheldon protocol for MS since April, 2006.  doxyi [5] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyl Pulses start end Sept., LDNi [6] 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.

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On Wheldon protocol for MSi [4] since April, 2006.  doxyi [5] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [2] Pulses start end Sept., LDNi [6] 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma

hey Wig!

I take benedryl at night time for sleep,but  happy it does double duty!  I also take about 10 gms of Chitosan dailey & a heaping tsp of yaeyama chlorella in my green juice with the 2nd round of supplement for the day.  I also take 5 gms of Ester C.  If needed I down a few packed of Emergen C, gluclose & charcoal on hand for an extreme meltdown of toxins & porphyriai [16].

I cannot say enough about keeping this under control with the horse before the cart if possible.  It helps keep the depresssion & occasional turettes spilling out from the Troll queen which makes everyone here much happier!!

 

CFIDSi [32]/ME 32 yrs, FMSi [29], IBSi [33], EBVi [22], CMV, Cpni [13], chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [11] 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#10 1000 mg 3 days & 750mg 2 days, 5-17-8

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CFIDSi [32]/ME 32 yrs, FMSi [29], IBSi [33], EBVi [22], CMV, Cpni [13], H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi [34] +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli [2]/day-3 days

Hi Ruth, Yes, I need to do a better job of managing die off. The good news is I am feeling better. I added zyflamend, carrot juice, and was better about taking glucose before every meal. Where do you get chitosan? I also have emergen C here. I am taking yaeyama cholrella too. I will start juicing more as I do not get enough vegies - its just getting organized here - getting vegies and making time. On Wheldon protocol for MSi [4] since April, 2006.  doxyi [5] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [2] Pulses start end Sept., LDNi [6] 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.

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On Wheldon protocol for MSi [4] since April, 2006.  doxyi [5] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [2] Pulses start end Sept., LDNi [6] 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma

I also got "field day" right this week - coming out of the fog.

 

 On Wheldon protocol for MSi [4] since April, 2006.  doxyi [5] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [2] Pulses start end Sept., LDNi [6] 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.

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On Wheldon protocol for MSi [4] since April, 2006.  doxyi [5] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [2] Pulses start end Sept., LDNi [6] 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma

Pleased to hear you are recovering Wiggy... and that you did not get on the wrong side of the football coach this week.

Michèle (UK) GFAi [18]: Wheldon CAPi [8] 1st May 2006. Daily Doxyi [5], Azi MWF, metroi [2] pulse. Zoo keeper for Ella, RRMSi [19], At worse EDSSi [20] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [18]: Wheldon CAPi [8] 1st May 2006. Daily Doxyi [5], Azi MWF, metroi [2] pulse. Zoo keeper for Ella, RRMSi [19], At worse EDSSi [20] 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

Thanks Michele, Yes, always trying to stay out of the way of that coach. She ended up coming up with 2 subs for the game I missed - also 1 other family. Which I was relieved to hear as otherwise the kids are on the field the entire game - no breaks and its gotten pretty hot here. On Wheldon protocol for MSi [4] since April, 2006.  doxyi [5] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [2] Pulses start end Sept., LDNi [6] 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30.

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On Wheldon protocol for MSi [4] since April, 2006.  doxyi [5] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [2] Pulses start end Sept., LDNi [6] 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma