Minai, I am so sorry and do not know what to say except I hope you do not have Diabetes - enough is enough. Keep holding on and I wish better days really soon. On Wheldon protocol for MSi [7] since April, 2006.  doxyi [8] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [9] Pulses start end Sept., LDNi [5] 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 [7] since April, 2006.  doxyi [8] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [9] Pulses start end Sept., LDNi [5] 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma

Minai, unfortunatly i have no advice for you because its well out of my league but i just want to wish you well and hope you get some answers .

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CPNi [10] pcri [11] and antibody positive , treating MSi [7], CFSi [12], TMJ, trigeminal neuralgia, IBSi [13] neutropenia, pus found in facial bone, Doxyi [8] 100x2,Doxy 200x2 zithro 250x1 alternate days. Metroi [9] pulses each month.

Minai, unfortunatly i have no advice for you because its well out of my league but i just want to wish you well and hope you get some answers .

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CPNi [10] pcri [11] and antibody positive , treating MSi [7], CFSi [12], TMJ, trigeminal neuralgia, IBSi [13] neutropenia, pus found in facial bone, Doxyi [8] 100x2,Doxy 200x2 zithro 250x1 alternate days. Metroi [9] pulses each month.

There is definately something going on... boils on the bum usually linger for weeks and for it to have burst overnight there must have been some pressure behind it... I know little about lyme so not much use to you there, but it does not sound like the kind of skin pustule I had earlier on in the treatment that I put down to Cpni [10] die off, and they were bad enough.

Michèle (UK) GFAi [14]: Wheldon CAPi [2] 1st May 2006. Daily Doxyi [8], Azi MWF, metroi [9] pulse. Zoo keeper for Ella, RRMSi [3], At worse EDSSi [15] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [14]: Wheldon CAPi [2] 1st May 2006. Daily Doxyi [8], Azi MWF, metroi [9] pulse. Zoo keeper for Ella, RRMSi [3], At worse EDSSi [15] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

Hello Minai,  I am sorry you are having all of these complications.  I have to ask, considering your prior cellulitis.... did the dr's culture the boil on your bum to ensure it is not MRSA (Methicillin-resistant Staphylococcus aureus )?   I don't want to scare you, just make sure it's been eliminated. 

 My husband has had reoccuring bouts of MRSA cellulitis (and it started with a boil, or we thought an infected hair, on his bum).  After several episodes about every 6 months we went to an ID dr.  My husband was treated with combination mega doses of SMP/TMZ (bactrim Double strength), Rimfampin and Vancymyin (sp) cream in the nose.  So far it has not come back.

You've been on major ABXi [16] but sometimes it is hard to get in control unless you are also treated for colonization (treatment by vancymycin in the nasal passages) as well as the correct antibiotic.

Just concerned.... perhaps this has already been eliminated (I hope so!)

Blessings,

Jeanneroz 

Jeanneroz ~CPN diagnosed and started protocol  4/2007, also have  HHV6, EBVi [17].  CFIDSi [18]/FM diagnosed: 6/07; Protocol:  200 mg/doxyi [8] daily~ 250 mg AZITH M/W/F ~1st Tindi pulse 4/17/08- 1 250 mg. tab for 2 days. supplementsi [19]

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JeanneRoz~CPNi [10] diagnosed & started protocol 4/2007, also HHV6, EBVi [17]. CFIDSi [18]/FM diagnosed: 6/07; 100mg/doxyi [8]/BID ~ 250 mg AZITH M/W/F ~1st Tinii [20] pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. Sup

 Hi Minai,

It sounds miserable, what you are going through.  Do you have other symptoms of diabetes like, excessive thirst, frequent urination, and extreme hunger? Your high triglycerides and propensity for infectionsi [22] could be suggestive of diabetes.  Have you had your blood sugar tested? I can't remember if Dr. Straton mentions it but alpha lipoic acidi [23] in doses of 600mg twice a day has been effective for neuopathy.  It also seems to help lower blood sugar.  I know this because I was researching it for a friend recently.  Hope your symptoms continue to improve quickly.

Sometime all we can do is put one foot infront of another waiting for our bodies to heal.

Tina-MS 37 years;EDSSi [15] 4.5   1/1/08 Wheldon CAPi [2]; Azith 250mg 3 x a week; Doxyi [8] 200mg daily, NACi [4] 2000 mg daily, started Flagyli [9] pulse 4/14/08.

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 Tina-MSi [7] 37 years;EDSSi [15] 4.5   1/1/08 Wheldon CAPi [2]; Azith 250mg 3 x a week; Doxyi [8] 200mg daily, NACi [4] 2000 mg daily, started Flagyli [9] pulse 4/14/08.

 

Minai, you may want to see my recent post about green tea enhancing the effect of antibioticsi [16]. They were specifically talking about antibiotic resistance. Might even work to make a poultice of green tea and apply it to the wound area. http://www.cpnhelp.org/green_tea_enhances_the_ki [24] Hope you are feeling better soon!! Raven CApi [2] since 8-05 for Cpn and Mycoplasma P. for MSi [7] and/or CFSi [12]

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Feeling 98% well and going for 100! Still testing + for Cpni [10] since June '08.CAPi [2] since 8-05 for Cpn and Mycoplasma P. for MSi [7] and/or CFSi [12]. Also EBVi [17] and HHV6 NACi [4], Iodoral, T3, BHRT, Methylcobalamin injections, Nitro patch, LDNi [5] and Methylation supplementsi [19]

Minai, Sorry to hear about your new troubles. Wishing you to feel better soon!

Nata.

Arthritis/tendonitis. Lyme disease (diagnosed by Western blot). Cpni [10]i [25] +. Hypertensioni [26]. HypoT Hashi's. Recurrent miscarriages. Started Jan-Feb'08 with Minoi [27]i [28]/Rif/Azith.

Feb-Mar'08 Azith.

Rif 600 mg/day since Feb'08 + Doxyi [8] 100 mg x 2/day since March'08. 

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Nata.

CAPi [2] for arthritis, tendonitis, sinusitis, pelvic pain, fatigue and muscle pain. Hypertension, HypoT Hashi's. Lyme (+) and Cpni [10]i [10] (+

Thank you Wiggy. Wishing the same for you.

 

 

Michele: Thank you for sharing this. It's probably because there is not much to me. Am down to 105 lbs (not sure what the stones conversion is). Ironically my daughter, who is much bigger than I, developed peri-rectal abcesses just 2 months (maybe earlier?) after starting CAPi [2] with Doxyi [8]. She had them surgically drained, too. Was in the hospital for nearly a week. Lots of IV ABXi [16] including Metroi [9]. They haven't returned, so far, and she is still on CAP. Doctor was surprised that not more was draining from mine. Said he thought we had just "caught it in time."

 

 

Jeanne: That's what the doc thought it was, and that's what he's treating it for. My husband finally went to Walter Reed and had a nasal swab done. After testing the sample 3 times, it came back as non- MRSA staph. He did the Bactroban in his nose for a week. He has to get re-cutured, but doubt it is gone. So, that's what they give if it is not? He hasn't gotten anything on his bum, but has on his eyes, nose, lips, and head. We are all wondering about it with my daughter and myself. Our lesions weren't cultured. 1st dose of Bactrim DS went well, except for a headache, same side of head that I experienced Bell's palsy and Trigeminal Neuralgia on. Thank you, Jeanne. I do wonder about the possibilities.

 

 

Tina: I do have frequent urination. Started with the cepahlosporins, which are not supposed to be given to those with diabetes. Was also disgnosed with hypoglycemia years ago. Told that it might eventually turn into diabetes. Paternal grandmother had Type II. My blood sugar level was 200 on a fasting test. Interesting about the ALA. Will have to look into it more. Sarah did confirm that Cpni [10] does cause diabetes. Did try Benfotiamine. Haven't had a fasting glucose test in over a year. Will have to have another to rule it out. Am thinking of Actos. Supposed to be good for diabetes, die-off, and MSi [7]. Thanks for your info.

 

 

Raven: Thank you. Will look at your Green Tea post and info. That is an idea, to apply it to the wound.

 

 

So good to hear from you, Nata. Thanks. I wish the same for you.

 

 

--Minai

 

 

RRMSi [3], diagnosed 2/04. NACi [4] 4/06. Started Wheldon/Stratton regime 8/30/06. Doxycycline, 8/06, Azith, 10/06. Switched to Roxithromycin 11/06. Psuedo relapse/die-off with hospitalization 1/07. GAD-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY. LDNi [5] 4/07. 1st Tinidazole Pulse, 8/11/07. Keflex 2/08. IV Rocephini [1] 3/08. USA

I know someone who got off all his diabetes, blood pressure, and cholesteroli [29] medicines with a low/healthy-carb diet and exercise. I know if you're feeling lousy the exercise part is not really an option but you might consider something like the South Beach diet for healthy blood sugar and cholesterol levels. I don't have a blood sugar problem by my total cholesterol has dropped 20 points since I started eating this way and my tri-HDL-LDL ratios are well-balanced.

Asthmai [30], chronic sinusitis/rhinitis, chronic tendonitis, hypothyroid. Jan 9, '08 - started azithromycin 1000mg/week. Mar 13, '08 - increased azi to 250mg/day, added 20mg Benicar daily.

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GFAi [14] - asthmai [30], sinusitis/rhinitis, tendonitis, low back pain, hypothyroid. Started azi 1000mg/week Jan 9, '08. Increased azi to 250mg/day, added 20mg Benicar daily Mar 13, '08. First Flagyli [9] pulse started June 30, '08. Added Doxyi [8] 200mg/day Aug 16.

Neuropathy came back worse than ever. Husband had to carry me in to LLMD appt. He thought that maybe I should be hospitalized for the die-off. Husband said no, he could treat me and change the dressing. We'll see how it goes. Am now on CSM (Lymies know what this is). Actos is the only thing that is finally chasing away the neuropathy/die-off symptoms. Will start WhelChol, again. Then re-start CAPi [2] when able. Jeanne, will write when I can. Thanks, Sunni. --Minai

The South Beach Diet is basically a low carb diet, and although I also feel better on a low glycemic index diet, it is difficult to maintain this type of diet when dealing with Cpni [10].   We need carbs for the glucose it provides so as to minimise the risk of porphyriai [31]... It's a conundrum...

Michèle (UK) GFAi [14]: Wheldon CAPi [2] 1st May 2006. Daily Doxyi [8], Azi MWF, metroi [9] pulse. Zoo keeper for Ella, RRMSi [3], At worse EDSSi [15] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Michèle (UK) GFAi [14]: Wheldon CAPi [2] 1st May 2006. Daily Doxyi [8], Azi MWF, metroi [9] pulse. Zoo keeper for Ella, RRMSi [3], At worse EDSSi [15] 9, 3 months later 7 now 5.5 Wheldon CAP 16th March 2006

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Hi Minai, Sorry to hear your news. Glad your husband is with you. Hope for a turn for the better soon. On Wheldon protocol for MSi [7] since April, 2006.  doxyi [8] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [9] Pulses start end Sept., LDNi [5] 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 [7] since April, 2006.  doxyi [8] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [9] Pulses start end Sept., LDNi [5] 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma

Yesterday was hell day with symptoms. Thought that I could get by with taking only 3, 15mg doses of Actos and no WelChol. Big mistake.

 

Michele: Yes. In my situation I do better with eating many carbs to counteract porphyriai [31]. Red meat seems to trigger it. So have to eat only chicken, fish, cheese, and milk for protein. Also must keep Smarties at hand, because of the Actos.

 

Sarah: I worded it wrong in that I do not take CSM, but am on a CSM protocol: LINK [34] and LINK [35] WelChol, substituted for Cholestyramine. And only a half or 1, 625mg tab/day at that: LINK [36] These are the only links that I can find that best describe this protocol. So far, haven’t been able to tolerate it in full though. Interesting that Actos is an antidiabetic drug. What it is for in the protocol is to control inflammationi [37] caused by the MM9 enzyme. D W talks about MM9’s role on one of his pages, I think…

 

 

Wiggy: Thanks. For all the good that he is. He’s quite distracted as a rear detachment commander whose troops just arrived back from the Iraqi surge mission. Happy Memorial Day.

 

 

 --Minai

Hi Minai,

Members of the cabbage family also seem to trigger porphyriai [31] symptoms in spades for me.  This is listed on a few of the porphyria sites but not all, and it took me quite some time to realize it...

Hang in there! 

 

On Combined Antibiotic Protocol for Cpni [10] in Rosaceai [39] 01/06 - 07/07, On Vit D3 + NACi [4] since 07/07 and daily FIRi [40] Sauna since 08/07

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Treatment for Rosaceai [39]

• CAPi [2]:  01/06 - 07/07
• High-Dose Vit D3, NACi [4] & FIRi [40] Sauna Only:  07/07 - 11/08
• Intermittent CAP, High-Dose Vit D3:  11/08 - Present

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Minai,

girl, I hope you are better really soon. 

In the late 70's I worked beside this woman who had pussy boils erupting all over her body!  she was one tough woman, working & in so much pain. 

Looking back, that is about the time I(within a year) got the never ending cough & then double pneumonia!- the infection of CPni [10].

I am so glad your husband said NO, NO NO to the hospital stay!  There are way too many sick people there & lots of germs!

 

CFIDSi [18]/ME 26yrs, FMSi [43], IBSi [13], EBVi [17], CMV, Cpn, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [4] 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 [18]/ME 32 yrs, FMSi [43], IBSi [13], EBVi [17], CMV, Cpni [10], 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

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Happy Memorial Day to you! On Wheldon protocol for MSi [7] since April, 2006.  doxyi [8] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [9] Pulses start end Sept., LDNi [5] 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 [7] since April, 2006.  doxyi [8] 200 mgs daily, zithromax 250 mgs 3x/ week , Flagyli [9] Pulses start end Sept., LDNi [5] 2004. Gad-enhanced MRI of brain and spine shows NO NEW DISEASE ACTIVITY and one lesion diminishing in size on 9/30. Ma

Symptoms became worse than ever, yesterday. In spite of taking WelCol. Resorted to a 5mg. Prednisone burst. Only thing that took the edge off. Doctor is nearly impossible to touch base with and this seems to be one of these times. Red: Thanks. Am trying. Very good to know about the cabbage family foods. This includes brocolli and cauliflower...wow. Ruth: Thank you. Yes. Am glad that I'm not in the hospital except that my husband can't/is not doing much to care for me, himself. Sarah: Ca va. Didn't know the specifics about your Remembrance Day. Am quite surprised/disappointed that it is not a public holiday. Am sorry that it has been raining, there. Don't know how the wound is because I can't see it. Husband finally changed it this AM, after 2 days of letting it go. Says it's small and should be completly healed up in another couple of days. Wiggy: Thank you :-) --Minai

Minai, thanks for providing the CSM protocol links above. 

Healing thoughts and blessings to you.

Louise

 CFS. CPnPositive. BbPositive. WheldonCAP began6/24/07. NACi [4],Doxyi [8], Roxi,FullTiniPulses. Intermittent Cholestyramine,1-2packets, at bedtime,most often with pulses,and as needed, for Phorphoria & liposacaride Endotoxini [45] Die-OffExperiences.

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Louise  CFSi [12], CPN+/Bb+,Wheldon CAPi [2] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [31] & Endotoxinsi [46] 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

Minai, here is a quick thought that breezed into my mind just now.   Have you investigated hyperbaric oxyigen treatment for that infection?   I have to say I do not know much about it but it seems to be an accepted medical practice and one of the hospitals locally hear has a chamber and it is used for wounds that are extremely slow healing.  Just a thought, from left field maybe.

Louise

 CFS. CPnPositive. BbPositive. WheldonCAP began6/24/07. NACi [4],Doxyi [8], Roxi,FullTiniPulses. Intermittent Cholestyramine,1-2packets, at bedtime,most often with pulses,and as needed, for Phorphoria & liposacaride Endotoxini [45] Die-OffExperiences.

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Louise  CFSi [12], CPN+/Bb+,Wheldon CAPi [2] 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai [31] & Endotoxinsi [46] 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

Hi Louise, Thank you for the well-wishes. Doctor has hyperbaric O2 chamber that he's offered me from the start. Eventually decided that the results were too short-lived to make it worth it. This, in part, after receiving such therapy (including o-zone) from my dentist. Thanks for the thought --Minai

It's really more about healthy carbs than low carb. The strict low-carb part is only phase 1 and you only need to worry about that if you're trying to lose weight quickly, not something I'd recommend for any of us. But just for health purposes you can go straight to phase 3 and have sufficient carbs by eating whole grains and beans and certain fruits. Black beans are one of my favorites to eat regularly to stay with healthy carbs while providing sufficient carbs to deal with porphyriai [31]. They digest slowly so they provide a steady supply of carbs for several hours.

Asthmai [30], chronic sinusitis/rhinitis, chronic tendonitis, hypothyroid. Jan 9, '08 - started azithromycin 1000mg/week. Mar 13, '08 - increased azi to 250mg/day, added 20mg Benicar daily.

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GFAi [14] - asthmai [30], sinusitis/rhinitis, tendonitis, low back pain, hypothyroid. Started azi 1000mg/week Jan 9, '08. Increased azi to 250mg/day, added 20mg Benicar daily Mar 13, '08. First Flagyli [9] pulse started June 30, '08. Added Doxyi [8] 200mg/day Aug 16.