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Sarah -  Thanks for the clarification and the detailed information.  Really an amazing story. 

While everyone wants to feel better now and I certainly want my husband to improve now, your story and timeline really tell the story of neurological healing.  

I have trouble thinking it might be 8, 10, 17 years for my husband's brain to heal to the point that his (and my) quality of life improves.  But improve it may. 

Wish I was a Saint and had the patience of one. 

^{Daisy - Husband on CAPi [2] 5/07.   Roxithromycin, Minocycline, Rifampin, Bactrim DS, Mepron, Prednisone, Novantrone, Doxyi [8], Azithromycin, Flagyli [9], Diflucan}

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

"…when my mind began to clear and I got so frustrated…"

I wondered when I read that if the 'fog' that we experience is actually beneficial to our sanity somehow. If I think of all the things I feel, don't feel, and can no longer do I don't know how I could comprehend it. Some days I marvel at it, I was so sharp and quick once; how did I come to this?

 --

Daisy wrote: "Wish I was a Saint and had the patience of one."

I have a post-it taped to my work monitor which reads: "An ounce of patience is worth more than a pound of brains." And, yet, I am at a stage where I no longer question who I am, only how much I am willing to compromise. Makes it tough to be patient. I've bought my hand basket.
--

May 2008. NACx2400mg, D3x4000mg, B12x1000mcg. Allergies, chronic inflamation, eczema, long-term steroid use, sinusitis/cysts, BL/TN, FM, CF, arthritis, rosaceai [10].

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Corinna | GFAi [11]. Wheldon Protocol: 4–8/08. Can't kill the yeast.

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Sarah - Thanks for the positive hope!  Perhaps I should start a sports betting type pool for how long my husband's brain will take to heal?  Wonder what the over/under should be?  (JUST KIDDING FOLKS - I AM DEEP IN THE LAND OF BLACK HUMOR THESE DAYS)

Re the speed of neural networks.  I will throw this out there from my research into neural feedback therapy.  What I am learning is that neural feedback can not only help the brain heal and form new neural networks, cause literally brain volume (corpus callosum) to grow/increase but can also make new neural networks around brain damaged areas work much faster.

My husband got his first neural feedback  brain map done yesterday.  It's a type of Q-EEG.  This map will give a 3d look at my husband's brain and areas of excess and poor signals.  Long story short, after database matching and much other, the doctor will develop a treatment plan for my husband.  Supposedly very good for cognitive function.  Treatment sessions consist of my husband learning to manipulate items on a computer screen via electrodes from his brain - look Mom no hands.  The ultimate thinking man's game if you will. 

Will let you know how it goes.  If it works on my husband, David may have yet another career ahead of him... 

 

^{Daisy - Husband on CAPi [2] 5/07.   Roxithromycin, Minocycline, Rifampin, Bactrim DS, Mepron, Prednisone, Novantrone, Doxyi [8], Azithromycin, Flagyli [9], Diflucan}

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

My apologies, Sarah. I made a general comment. I'm making a concerted attempt to find a place on this site, and it seems that I am failing quite spectacularly in the effort.

I obviously do not know any of the folks here, and vice versa. I will learn what I can from the site and be glad for it.

Corinna
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May 2008. NACx2400mg, D3x4000mg, B12x1000mcg. Allergies, chronic inflamation, eczema, long-term steroid use, sinusitis/cysts, BL/TN, FM, CF, arthritis, rosaceai [10].

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Corinna | GFAi [11]. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Corinna,  I'm butting in...please excuse me.  You already have a place here, so what do you think you're failing at?  When there was only a handful of people, it was easy to know lots about everyone.  That's not the case now.  Can't speak for Sarah, but I think she was just clarifying.  Your presence and blogging contributions on the site are a valuable asset.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [13]).  CAPi [2] since August 06, Cpni [14], Mpn, B. burgdorferi, systemic candidiasis, EBVi [15], CMV & other herpes family viral infectionsi [16], elevated heavy metals, gluten+casein sensitivity. 

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [13]).  CAPi [2] since August 06, Cpni [14], Mpn, B. burgdorferi, systemic candidiasis, EBVi [15], CMV & other herpes family viral infectionsi [16], elevated heavy metals, gluten+casein sensitivity. 

Joyce, you are very gracious. Thank you.
--

May 2008. NACx2400mg, D3x4000mg, B12x1000mcg. Allergies, chronic inflamation, eczema, long-term steroid use, sinusitis/cysts, BL/TN, FM, CF, arthritis, rosaceai [10].

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Corinna | GFAi [11]. Wheldon Protocol: 4–8/08. Can't kill the yeast.

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I think brainfog is the bacteria's cloaking device (trekkies will understand this). If we don't know how sick we really are, then we don't fight the invader within us. We just go swimming along, thinking we're doing just ducky, as we drown without knowing it. When brain fog lifts, it's a harsh realization that we nearly went under.

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

Dead right, Mac.

It makes me think of Stevie Smith's poem 'Not Waving but Drowning.'

Nobody heard him, the dead man,
But still he lay moaning:
I was much further out than you thought
And not waving but drowning.

Poor chap, he always loved larking
And now he's dead
It must have been too cold for him his heart gave way,
They said.

Oh, no no no, it was too cold always
(Still the dead one lay moaning)
I was much too far out all my life
And not waving but drowning.

D W - [Myalgia and hypertensioni [19] (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei [9]. No medication now; just supplementsi [20] and IR sauna. Morning BP typically 105/75]

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D W - [Myalgia and hypertensioni [19] (typically 155/95.) Began (2003) taking doxycycline and macrolide and later adding metronidazolei [9]. No medication now; just supplementsi [20] and IR sauna. Morning BP typically 105/75]

Corinna, I second Joyce's remark.   You and everyone else who have joined us recently have a place here and your opinion, voice, information is as valuable as anyone else.   Jim recently asked new members to help the rest of the community make this a better place by providing feed back about the site.   So any comments that new people make be they positive or negative have already helped this community.

Before you know it, you will be an old hand at this.   But even at this stage I have read your comment on burning feet... Any comment we make that mirrors someone elses experience is supportive to that person and it does not matter how long either of them has been around here.

Michèle (UK) GFAi [11]: Wheldon CAPi [2] 1st May 2006. Daily Doxyi [8], Azi MWF, metroi [9] pulse. Zoo keeper for Ella, RRMSi [21], At worse EDSSi [6] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [11]: Wheldon CAPi [2] 1st May 2006. Daily Doxyi [8], Azi MWF, metroi [9] pulse. Zoo keeper for Ella, RRMSi [21], At worse EDSSi [6] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Daisy, Happy Cpni [14] birthday, did you know that you had been a member for exactly 1 year today?

You are another one who has made such a big difference to many people in this community. Thanks a million.

Oh and thanks for giving me the tools to motivate my daughter into doing some nerve repair in her own body.   I'm going to follow up the neurofeedback therepy lead as well.   Just started with this [22]. 

Michèle (UK) GFAi [11]: Wheldon CAPi [2] 1st May 2006. Daily Doxyi [8], Azi MWF, metroi [9] pulse. Zoo keeper for Ella, RRMSi [21], At worse EDSSi [6] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [11]: Wheldon CAPi [2] 1st May 2006. Daily Doxyi [8], Azi MWF, metroi [9] pulse. Zoo keeper for Ella, RRMSi [21], At worse EDSSi [6] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Thanks MacKintosh for sharing your concept and David for your sharing of that apt poem. 

When I was going under with brain fog as I grew sicker and sicker I knew I was fading away and all that I tried had ceased to work.  It makes such sense to me that it is a bacterial cloaking affect as it quietly overwhelms the body and subdues your efforts.

If mental clarity were the only effect of this therapy on me ( and it is not) I would stay on it for the rest of my life if necessary to maintain that.

Louise USA.CFSi [23].CPn Positive.BbPositive.WheldonCAP6/24/07.NACi [1],Doxyi [8],Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi [24]. 

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Louise  CFSi [23], CPN+/Bb+,Wheldon CAPi [2] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [25] & Endotoxinsi [24] PRN, Doxyi [8] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

Yes, Daisy, happy anniversary, though it seems longer than 1 year!

Not having any prior knowledge of neurofeedback, I've gone a-googling to learn about it.  My impression is that this type of remedial neurofeedback is a very sophisticated, gentle, corrective, and positively-directioned form of brainwashing.  Brainwashing is a word that normally carries with it a negative connotation, but if there were ever a good kind of brainwashing, this is it. 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [13]).  CAPi [2] since August 06, Cpni [14], Mpn, B. burgdorferi, systemic candidiasis, EBVi [15], CMV & other herpes family viral infectionsi [16], elevated heavy metals, gluten+casein sensitivity. 

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [13]).  CAPi [2] since August 06, Cpni [14], Mpn, B. burgdorferi, systemic candidiasis, EBVi [15], CMV & other herpes family viral infectionsi [16], elevated heavy metals, gluten+casein sensitivity. 

Daisy, I took neurofeedback therapy in 2005 - 2007 during my cognitively impaired time of active persisent infection.  Ended just about a year ago at the time I was worked up for my unrelenting fatigue, recieving the Dx CFSi [23] and FMSi [26] and CPni [14] and eventually Bb.

It was helpful despite the active infectionsi [16] so my take is that it will be even more helpful during treatment.

My Nurse Therapist moved from the area so I stopped treatment.  I have however purchases one of the devices that he owned and used,

It is called Healing Rhythms http://www.wilddivine.com/healing-rhythms-coupon/ [27]and works with the computer as all of my therapists  programs did.

Healing Rhythems was not the most complex program that he used.  I did enjoy it and it was available easily for me as a replacement therapy.

Hope this may help someone.  If you get it and want to chat about it pmessage me.

Louise

Louise USA.CFS.CPn Positive.BbPositive.WheldonCAP6/24/07.NACi [1],Doxyi [8],Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi [24]. 

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Louise  CFSi [23], CPN+/Bb+,Wheldon CAPi [2] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [25] & Endotoxinsi [24] PRN, Doxyi [8] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support

Great story, just makes me think if only i knew then what i know now... I would have been right there too with my sucess story. I came very very close to getting better once. I was actually totally symptom free. Unfortunatly I didnt know about NACi [1] and sadly the bugs were hiding and came back as soon as I stopped the meds. Now Im fighting a much more evolved group of pathogens, its not easy. Anyway thanks for the sucess story, it gives us something to focus on.

CPNi [14] pcri [28] and antibody positive , treating MSi [7], CFSi [23], TMJ, trigeminal neuralgia, IBS neutropenia, pus found in facial bone, Doxy 100x2, zithro 250x1 alternate days. Metroi [9] pulses each month.

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CPNi [14] pcri [28] and antibody positive , treating MSi [7], CFSi [23], TMJ, trigeminal neuralgia, IBSi [29] neutropenia, pus found in facial bone, Doxyi [8] 100x2,Doxy 200x2 zithro 250x1 alternate days. Metroi [9] pulses each month.

 Michèle - Thanks ! 

Wish the year didn't feel so much like dog years though!

Glad Ella is motivated to go for nerve repair.  I'll let you know how the neurofeedback works for us.  

Thanks for the link to your neuro research.  Here's [30] another that I'll pass youor way. 

For any who are curious but don't want to research.  This is a good definition:

EEG Neurofeedback training uses a computer assisted EEG (Electroencephalogram) which accurately measures Brainwave activity through sensors, safely placed on the surface of the head. This brainwave activity can then be monitored visually and auditorally.

Through this sophisticated feedback system, individuals are taught to effectively exercise their brain, leading to increased awareness and differentiation of mental states. EEG Neurofeedback training naturally empowers the brain to effortlessly develop increased control and strength, much like the effects of weight lifting to develop muscle strength or jogging to improve cardiovascular fitness. Improvements in the ability to focus and sustain concentration are naturally developed.

^{Daisy - Husband on CAPi [2] 5/07.   Roxithromycin, Minocycline, Rifampin, Bactrim DS, Mepron, Prednisone, Novantrone, Doxyi [8], Azithromycin, Flagyli [9], Diflucan}

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

Yes, I still confuse its survival mechanisms with my own. My doctor had me write out a time path the other day, from early childhood to present, as much as could be recalled with respect to health issues and testing. I was shocked at how clear it was that I had become infected at 15. So, my CPni [14] and I have been together 3/4 of my life now and I do not recognize it from me.

I need to relearn my story. This site is my lifeline.

--

May 2008. NACx2400mg, D3x4000mg, B12x1000mcg. Allergies, chronic inflamation, eczema, long-term steroid use, sinusitis/cysts, BL/TN, FM, CF, arthritis, rosaceai [10].

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Corinna | GFAi [11]. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Thank you Michèle. I have been a member of the Rosaceai [10] support community for years and post(ed) heavily, during which time I developed strong and positive bonds which went miles for my general well-being. I think it's easy to forget the vulnerability that comes with being a newbie.

Warm regards,
Corinna

 

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May 2008. NACx2400mg, D3x4000mg, B12x1000mcg. Allergies, chronic inflamation, eczema, long-term steroid use, sinusitis/cysts, BL/TN, FM, CF, arthritis, rosaceai [31].

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Corinna | GFAi [11]. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Corinna, you are doing just fine & your place here is just great!!  The brain fog seems to be a bit different for the MS'ers to the rest of us. 

 Nevertheless, we all react a little differently even in our own "groups".  The one thing that Sarah & I (probably others)  have in common is that when you are in the midst of illness, especially the fog, you don't realize it.  We compensate for it, deny it & brush it off as aging.   Now that much of my brain fog is gone, "I can see clearly now" (the rain is gone)" says the song.  I look back & cannot believe how bad I was & I was driving & working, though not well.  Seriously, God was looking out for me big time as I could have done alot of damage!

Also, this Typ A had zero patience.  Time, prayer & God have helped greatly.

peace

r

 CFIDS/ME 26yrs, FMSi [26], IBSi [29], EBVi [15], CMV, Cpni [14], chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [1] 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 [26], IBSi [29], EBVi [15], CMV, Cpni [14], chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#15 750 mg X 5 days 11-1-08

Ruth, I think that I am overly sensative presently, probably generally actually. I am confused by so much of this. I noted below that I don't know where CPni [14] ends and I begin, I've lived with it for so long.  There is an overwhelming feeling that comes with the knowledge, and I don't do overwhelming very well. I'm a doer and a fixer -- that can't seem to 'do' anymore and couldn't fix it.  Everytime I post on this thread I want to cry, so I'm going to go eat some chocolate now.

Corinna 

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May 2008. NACx2400mg, D3x4000mg, B12x1000mcg. Allergies, chronic inflamation, eczema, long-term steroid use, sinusitis/cysts, BL/TN, FM, CF, arthritis, rosaceai [10].

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Corinna | GFAi [11]. Wheldon Protocol: 4–8/08. Can't kill the yeast.

Ahhh.....chocolate....with nuts I hope!   With no nuts, what's the point? 

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [13]).  CAPi [2] since August 06, Cpni [14], Mpn, B. burgdorferi, systemic candidiasis, EBVi [15], CMV & other herpes family viral infectionsi [16], elevated heavy metals, gluten+casein sensitivity. 

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [13]).  CAPi [2] since August 06, Cpni [14], Mpn, B. burgdorferi, systemic candidiasis, EBVi [15], CMV & other herpes family viral infectionsi [16], elevated heavy metals, gluten+casein sensitivity. 

Hi Corinna,

You're doing just fine. No worries. I caught your post on the, was it "plastic red" feet and thought, that's probably the best description of the way my hands and feet were over the few years prior to CAPi [2] (and in early CAP too) that I've seen. Luckily it's all gone now, except when I let the secondary porphyriai [34] get out of hand, but the itching and burning that went along with it was awful!

Remember, many on this site are dealing with difficult illnesses and many times, some pretty intense reactions to treatment. At times we are more than a little sensitive. At other times we are more than a little insensitive. Still at other times we can be downright depressed or out and out crabby. It's the illness (likely the secondary porphyria IMHOi [35]), not really us, speaking.

BTW, how are you doing treatment-wise?

On Combined Antibiotic Protocol for Cpni [14] in Rosaceai [10] 01/06 - 07/07, On Vit D3 + NACi [1] since 07/07 and daily FIRi [36] Sauna since 08/07

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Treatment for Rosaceai [10]

• CAPi [2]:  01/06 - 07/07
• High-Dose Vit D3, NACi [1] & FIRi [36] Sauna Only:  07/07 - 11/08
• Intermittent CAP, High-Dose Vit D3:  11/08 - Present

Dan, you always give me a lift. Thank you for your insightfulness.

I am tolerating the NACi [1] with no problems now. I don't even notice how horrible it smells anymore. I have the occassional chest congestion, but more of a deep sensation with nothing more at the forefront. Overall, it feels like a layer has been peeled off -- like the preCAP regimen has removed some protective shell and I experience everything slightly (or more) magnified. My stomach area hurts dreadfully at times and and I'm having roving patches of numbness. I hurt here, there and everywhere, the pain can be deep or be superficial flu-skin. I am overcome with weakness, then light headed and giddy. I babbled and chattered at my poor bookkeeper today and we all had a bit of a laugh about it. As a group we're usually so quiet and focussed and it was like I'd had too much caffeine or something. She was perfectly delightful in the exchange but still I was quite out of sorts I think, LOL! I haven't quite grasped when to take a sugar tab yet. All in all it's been pretty strange what's been going on and I am glad that I have a bead on what is behind it. And this is just the beginning, wow.

My son and his young family are coming this weekend and afterwards I can set up my FIRi [36] Sauna again. I'm excited at the prospect, and will not work towards a sweat this time but take it even more slowly so that I can keep it up.

Warmest regards,
Corinna

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May 2008. NACx2400mg, D3x4000mg, B12x1000mcg. Allergies, chronic inflamation, eczema, long-term steroid use, sinusitis/cysts, BL/TN, FM, CF, arthritis, rosaceai [10].

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Corinna | GFAi [11]. Wheldon Protocol: 4–8/08. Can't kill the yeast.

I love chocolate & ice cream too!!

You might want to throw in a pouch of Emergen C or extra C as the critters may be bugging you & affecting your sensitivity.

Most of us older timers have been packing this nasty bugger around for decades (me since 19 I believe)!  I am not going to dwell on that, my focus is in the here & now & what I can learn & do about it.  I too, am a fixer & that is what I am doing here.

Peace

CFIDSi [32]/ME 26yrs, FMSi [26], IBSi [29], EBVi [15], CMV, Cpni [14], chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [1] 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 [26], IBSi [29], EBVi [15], CMV, Cpni [14], chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#15 750 mg X 5 days 11-1-08

corinna,

it is funny you brought up the "chatter".  About a month ago this happened to me when I met a friend at our church.  It was blah blah blah blah!  I said to him "I hope you don't mind my blabbering"  He said it was fine! lol   Then I was tired!

CFIDSi [32]/ME 26yrs, FMSi [26], IBSi [29], EBVi [15], CMV, Cpni [14], chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [1] 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 [26], IBSi [29], EBVi [15], CMV, Cpni [14], chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#15 750 mg X 5 days 11-1-08

DW- thanks, if that's the word, for that searingly accurate poem. "I was much too far out all my life, And not waving but drowning" is far too vivid a statement of how I felt when I first began your protocol and brings back chilling memories of decline amidst confusion. Good to appreciate that I'm standing on the beach now, even if the waves continue lapping at my feet.

CAPi [2] for Cpni [14] 11/04. Dx: 25yrs CFSi [23] & FMSi [26]. Currently: 300mg BID Roxithromycin, Bactrim DS 2x/day, Tinii [38] 1000mg/day pulses; Vit D2000 units, T4 & T3

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CAPi [2] for Cpni [14] 11/04. Dx: 25yrs CFSi [23] & FMSi [26]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [38] 1000mg/day pulses; Vit D2000 units, T4 & T3

DW, I get it too.  I was beginning to drown and beginning not to care if I did given the quality of my life at that time.  Knowing that I had formerly been a somewhat bright and articulate, active individual, that was going down, down, down.   At times now I feel like I an on the board walk.  Ever mindful to keep the reality of the ocean in sight respectfully.

Louise USA.CFSi [23].CPn Positive.BbPositive.WheldonCAP6/24/07.NACi [1],Doxyi [8],Roxi, Tinidazole Pulses. VitD-3,4000IU. Intermittent Cholestyramine 1-2 packets atbedtimewithpulses&asneeded forporphoria&endotoxinsi [24]. 

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Louise  CFSi [23], CPN+/Bb+,Wheldon CAPi [2] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [25] & Endotoxinsi [24] PRN, Doxyi [8] 200daily, Roxi 300BID, Tini500BIDx14day pulses,VitD3-10,000IU, Iodoral 25mg, {S.O.D.3/QD[KAL Brand], Pyruvate 3.75G, SAM-e For Energy Support