:-)

UK Carer of bedridden Severe ME/CFS Feb06. CPNi [3] dx. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxyi [5] Jan08.  150mg Roxi Apr08.

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UK Carer of bedridden Severe CFS Feb06. Tick bites Summer04.  CPNi [3] dx.Apr07. Borrelia dx Sept08. Samento 15 drps daily July07.  200mg Doxyi [5] Jan08.  300mg Roxy Apr08 Stopped abxi [4] Nov/Dec08. Building up on Supps again.

"Hurts so good" comes to mind.  Congratulations to you both for the confirming symptoms.  Paula, hang on tight to the CAPi [8] and that wonderful man of yours.

Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [9]).  CAP since August 06, Cpni [3], Mpn, B. burgdorferi, systemic candidiasis, EBVi [10], CMV & other herpes family viral infectionsi [11], elevated heavy metals, gluten+casein sensitivity. 

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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi [9]).  CAPi [8] since August 06, Cpni [3], Mpn, B. burgdorferi, systemic candidiasis, EBVi [10], CMV & other herpes family viral infectionsi [11], elevated heavy metals, gluten+casein sensitivity. 

Thanks Joyce. :-) 

UK Carer of bedridden Severe ME/CFS Feb06. CPNi [3] dx. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxyi [5] Jan08.  150mg Roxi Apr08.

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UK Carer of bedridden Severe CFS Feb06. Tick bites Summer04.  CPNi [3] dx.Apr07. Borrelia dx Sept08. Samento 15 drps daily July07.  200mg Doxyi [5] Jan08.  300mg Roxy Apr08 Stopped abxi [4] Nov/Dec08. Building up on Supps again.

Mark, coming from someone that depends on the support and care from my wonderful partner, you are such an important part of this war. When trouble comes in pairs from this crappy hand she was dealt healthwise, she at least has you to accompany her on the broken road. I will bet you a nickel that it's hard going sometimes as I know my husband gets very frustrated. Just know that the reward is knowing that you are doing something to fight, not just sitting on your hands waiting for who knows what. I hope I have the courage that Paula has to deal with the difficulties of the treatment.

Supplementsi [13] & NACi [1], starting CAPi [8] soon. MSi [14] for 17 years.

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SPMSi [9]< Supplementsi [13] & NACi [1], Doxyi [5] 200 mg, Azith 250 mg 3X/wk, most suppliments, currently Flagyli [15] 1500 mg x 4 days once per month

Mark - It seems to wierd to say this - but I know you understand - I view Paula's response to the Roxyi [16] as very positive thing for her long term health!

Go Roxy ! Go Paula !  Go Mark !

Wish you  best of luck and healing in this next phase of your journey!

^{Daisy - Husband on CAPi [8] 5/07.   Roxy, Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi [5], Azithromycin, Flagyli [15], Minoi [17]}

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

 Hey Paula & Mark-- after reading a patent on plant based anti-chlamydials I wouldn't be surprised if Samento had some effect in this direction. Just hasn't been lab tested for this. 

CAPi [8] for Cpni [3] 11/04. Dx: 25yrs CFSi [18] & FMSi [19]. Protocol: 200mg Doxyi [5], 250mg MWF Azith, Tinii [20] 1000mg/day pulses; Vit D1000 units, Iodoral 50mg, T4 & T3

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CAPi [8] for Cpni [3] 11/04. Dx: 25yrs CFSi [18] & FMSi [19]. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii [20] 1000mg/day pulses; Vit D2000 units, T4 & T3

Mark & Paula,

how great it is the pain is manageable & the mucous is slowly abating!!!

You are on the right path, good job!

Keep it up peeps.

CFIDSi [22]/ME 25yrs, FMSi [19], IBSi [23], EBVi [10], Cpni [3], (insomnia - melatonini [24], GABA, tarazadone, triazolam, novocycloprine, allergy formula, 3 gm tryptophan), Natural HRT peri-M, NACi [1] 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 [22]/ME 32 yrs, FMSi [19], IBSi [23], EBVi [10], CMV, Cpni [3], H1, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 3 gm, Full CAP 6-2-08, all supplementsi [13] +Sea Kelp, Chitosan Pulse 16 1-4-09 1gm Flagyli [15]/day-3 days

I echo Todybear here, having had the experience of being a carer, being able to do something for a loved one, is such a comfort.   Of course our sick ones are lucky to have us, it is very difficult to manage this kind of protocol on your own especially when you are very sick, and we provide emotional support too; but we the carers are so lucky to have this treatment available to us to help our loved ones.   It has given us hope and something to do that will make a difference.

Michèle (UK) GFAi [25]: Wheldon CAPi [8] 1st May 2006. Daily Doxyi [5], Azi MWF, metroi [15] pulse. Zoo keeper for Ella, RRMSi [26], At worse EDSSi [27] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [25]: Wheldon CAPi [8] 1st May 2006. Daily Doxyi [5], Azi MWF, metroi [15] pulse. Zoo keeper for Ella, RRMSi [26], At worse EDSSi [27] 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

very encouraging comments! So good to read that people are getting better and on a good way. Mark, Paula: keep on the good way! And many thanks to the partners who are supporting...including mine ;)

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doxy200, azith250, NACi [1] 2400, Metroi [15] 1250(once a month), supplementsi [13], vitaminsi [28].

Mark

I also use samento.  Helps with sinus infectionsi [11] and such..Maybe she could try serrapeptase for sinus congestion..google it or web search.  It also helps potentiate antibiotic kill as it reduced inflammationi [30] and some help with bio-films which bacteria create to hide especially in the sinus cavity.

Good luck and keep fighting

Brian

Thanks everyone.  Yes it is hard at times, but I'm not one to sit and wait for something to happen.  I had to look into her illness further and when I found this website after the CPni [3] diagnosis, the jigsaw puzzle started to come together.

Thanks Brian - I'll have a look into serrapeptase, cos her mucas does get her down sometimes when it hits, and once again it is hitting her quite bad again this morning after abating for almost half the day yesterday.

Mark 

UK Carer of bedridden Severe ME/CFS Feb06. CPN dx. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxyi [5] Jan08.  150mg Roxi Apr08.

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UK Carer of bedridden Severe CFS Feb06. Tick bites Summer04.  CPNi [3] dx.Apr07. Borrelia dx Sept08. Samento 15 drps daily July07.  200mg Doxyi [5] Jan08.  300mg Roxy Apr08 Stopped abxi [4] Nov/Dec08. Building up on Supps again.

Brian, could you paste a web link to where you get your serrapeptase from?  Which brand?

Thanks,

Mark 

 

UK Carer of bedridden Severe ME/CFS Feb06. CPNi [3] dx. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxyi [5] Jan08.  150mg Roxi Apr08.

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UK Carer of bedridden Severe CFS Feb06. Tick bites Summer04.  CPNi [3] dx.Apr07. Borrelia dx Sept08. Samento 15 drps daily July07.  200mg Doxyi [5] Jan08.  300mg Roxy Apr08 Stopped abxi [4] Nov/Dec08. Building up on Supps again.

Here [31] is a link to where I got mine from in the UK.  I seemed to have noticed more activity in my sinuses recently, maybe due to serrapeptase, not more mucus just more 'pressure'.   I had the flu recently and my nose stayed clear enough for me to breath throughout inspite of usual inflammationi [30] and green stuff.   

Michèle (UK) GFAi [25]: Wheldon CAPi [8] 1st May 2006. Daily Doxyi [5], Azi MWF, metroi [15] pulse. Zoo keeper for Ella, RRMSi [26], At worse EDSSi [27] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [25]: Wheldon CAPi [8] 1st May 2006. Daily Doxyi [5], Azi MWF, metroi [15] pulse. Zoo keeper for Ella, RRMSi [26], At worse EDSSi [27] 9, 3 months later 7 now 6.5 Wheldon CAP 16th March 2006

Thanks Michelle.  I'll have a look into it.  I have just seen Doctor's Best brand of it at Iherb too. 

UK Carer of bedridden Severe ME/CFS Feb06. CPNi [3] dx. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxyi [5] Jan08.  150mg Roxi Apr08.

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UK Carer of bedridden Severe CFS Feb06. Tick bites Summer04.  CPNi [3] dx.Apr07. Borrelia dx Sept08. Samento 15 drps daily July07.  200mg Doxyi [5] Jan08.  300mg Roxy Apr08 Stopped abxi [4] Nov/Dec08. Building up on Supps again.

I was going to post about Serrapeptidase  because i have used it in the past after surgery and its a great supplement. I think It works somewhat like a blood thinnner and it supposedly can actually eat scar tissue.  Another one worth looking into is called nattokinase.

Other supplements with this simular effect (as a combo)- of proteolytic enzymes are 2 products called wobenzyme and inflaheal both with simular ingredients. If you take them on an empty stomach "apparently" they will digest scar tissue instead of food. Thats the idea anyway.

[32]

 

 

 

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CPNi [3] pcri [33] and antibody positive , treating MSi [14], CFSi [18], TMJ, trigeminal neuralgia, IBSi [23] neutropenia, pus found in facial bone, Doxyi [5] 100x2,Doxy 200x2 zithro 250x1 alternate days. Metroi [15] pulses each month.

Hi Mark, I am interested in following Paula's progress, please congradulate her upon taking the plunge with Roxi. Please keep us posted on her progress.

Louise

CFSi [18]/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi [5], Roxi, TiniPulse#4 Ended2/3/08. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

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Louise  CFSi [18],CPNi [3]+/Bb+(Lyme) Cholestyramine 1-2 pks @ HS for Porphyriai [34] +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

Thanks everyone.  I'm trying to persuade Paula to try out the Serrapeptase.  I'm gonna do some more research into it today.  Her clear mucal discharge down her throat has been terrible these past couple of days.  (She went through 8 toilet rolls within 5 hours yesterday). She would rather it came from her nose (which is constantly blocked) as it would take less energy than having to clear it from her throat.

Mark 

UK Carer of bedridden Severe ME/CFS Feb06. CPNi [3] dx. Apr07. Samento 15 drops per day July07.  2400mg NAC 200mg Doxyi [5] Jan08.  200mg Roxi Apr08.

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UK Carer of bedridden Severe CFS Feb06. Tick bites Summer04.  CPNi [3] dx.Apr07. Borrelia dx Sept08. Samento 15 drps daily July07.  200mg Doxyi [5] Jan08.  300mg Roxy Apr08 Stopped abxi [4] Nov/Dec08. Building up on Supps again.