Found this thread last night, on one of the largest, most popular lyme forums: LINK
Would have responded to it, but am still too stricken by neuropathy to do much typing.
--Minai
RRMS, diagnosed 2/04. NACi 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 4/07. 1st Tinidazole Pulse, 8/11/07. Keflex 2/08. IV Rocephini 3/08. USA
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OK Minai, I posted something
OK Minai, I posted something to hopefully explain things to them. Good catch!
Berkshire, UK. Diagnosed RRMS Feb 4th 2008.
NACi 2400mg. All supplementsi. Doxyi 200mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008.
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Berkshire, UK. Diagnosed RRMS Feb 4th 2008.
NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008. First pulse June 2008
I just signed up, too.
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
Andesine... I'm a member on
Andesine... I'm a member on that site as well (and have been for a while)... what you posted was very helpful BUT you may wish to change the last sentence of paragraph 6 -- CPN is a bacteria not a virus :) Don't want to confuse the Lymies any more than they are!!!
Jeanneroz ~CPN 4/2007; HHV6, EBVi, CFIDSi/FM- diagnosed: 6/07; IBSi, prior kidney infectionsi, food allergies, hypothyroid (RAI for Graves in 1998), Adrenal issues; prior bronchitis/sinus problemsi. 200 mg/doxyi daily & 250 mg AZITH M/W/F, supplmnts
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Jeanneroz ~CPN diagnosed & started protocol 4/2007, also HV6, EBVi. CFIDSi/FM diagnosed: 6/07; 200 mg/doxyi/day~ 250 mg AZITH M/W/F ~
1st Tinii pulse 4/17/08- 1 250 mg. tab for 2 days.2nd Tini pulse 5/24/08: 1-250 mg 4 days, suplmntsI think I've found another
I think I've found another MSi symptom nobody else has recognised. It doesn't matter how often I go to type Bacteria it ALWAYS comes out as Virus. I've done it loads of times. I even read it back as bacteria. Forget MS Fog, I have MS Mental Block.
Now I just have to remember my password.
Berkshire, UK. Diagnosed RRMS Feb 4th 2008.
NACi 2400mg. All supplementsi. Doxyi 200mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008.
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Berkshire, UK. Diagnosed RRMS Feb 4th 2008.
NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008. First pulse June 2008
Here's what I posted over
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
Yes I changed it. I'm fairly
Yes I changed it. I'm fairly sure it now reads bacteria but if it still says virus I'm checking into the home for the terminally mistranslated.
Fascinating that the Doc found cpni though. Is this a sign that they're finally getting the message?
Berkshire, UK. Diagnosed RRMS Feb 4th 2008.
NACi 2400mg. All supplementsi. Doxyi 200mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008.
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Berkshire, UK. Diagnosed RRMS Feb 4th 2008.
NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008. First pulse June 2008
I want to know who the doc
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
Oh bums bums
Oh bums bums bums......
Berkshire, UK. Diagnosed RRMS Feb 4th 2008.
NACi 2400mg. All supplementsi. Doxyi 200mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008.
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Berkshire, UK. Diagnosed RRMS Feb 4th 2008.
NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008. First pulse June 2008
good job, I see the article
good job, I see the article Jim K wrote for the immunesupport site is there to read.
One of the posters said they were confused with out site!!! I suspect the CPni Brain fog, remind you of anyone?????
CFIDSi/ME 26yrs, FMSi,
IBSi, EBVi, CMV, Cpn, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#9 750mg 5.5 day, 4-25-8___________________________________________________________
CFIDSi/ME 32 yrs, FMSi,
IBSi, EBVi, CMV, Cpni, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#12 2 gm oops then 1250 mg 4 days 6-14-08Great job,
Great job, everyone...exactly what I was hoping for...just couldn't let it slide. Started welchol. So, only went there to research others' experiences with welchol/cholestyramine, and found that. Am curious to know who that doctor is, too. Thanks, all.
--Minai
RRMS, diagnosed 2/04. NACi 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. LDN 4/07. 1st Tinidazole Pulse, 8/11/07. Keflex 2/08. IV Rocephini 3/08. USAMinai, I've learnt a bit of
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
Minai, You may be reading
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
Thanks MacK. It is really
Thanks MacK. It is really you and others who are doing all of the work. Have always believed that we all have some things in common with our illnesses and how to treat. Thank you for doing all that you are doing both here and there.--Minai
p.s. am still struggling with neuralgia. Welchol 1/day seems to be the only thing helping.
Minai, Don't worry; as soon
Minai, Don't worry; as soon as you feel better, you can jump in on LymeNet any time!
I think this is the universe telling you that you simply have to rest, and if you won't do it yourself, then Mother Nature will have to make you do it! Take care.
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
Minai, Welchol helping your
Minai, Welchol helping your neuralgia, that is very interesting. How did you think to even try that approach? Makes me wonder if your neuralgia is porphoria related. With all my porphoria perspectives that I constantly offer I'll have to consult the list, I know abdomenal pain is common with porphoria, so dah, why not other manifestations of pain, I ask myself.
Healing thoughts being sent your way.
Louise
CFSi/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi, Roxi, Full TiniPulses. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.
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Louise CFSi Began Wheldon CAPi 6/07, Occ. Cholestyramine1-2packets HS/forporphoria&endotoxini sx, S.O.D.3TID(KAL Brand),VitD34000IU, MagnascentIodine 8gtts 1-2x/d, Doxy100BID,Roxi150BID,Tini500mg BIDpulses,CPnPos,BbPos.Summer2008signature.
MacK, maybe
MacK, maybe (sigh)...Thinking one thing while typing another...meant neuropathy (numbness), not neuralgia (pain)
Louise, don't know what to think about the Welchol. I asked my LLMD for the script after reading this: LINK
That was written by a doc who is closeby to us and whom he often refers to. He was a bit alarmed that I was asking. Claims that it makes one "herx' and to only take 1 or 2 tabs. He was right in that 1 is all that I can handle. Didn't have many of the symptoms of porphyriai, but all of LPSi. Caused, no doubt, by the bacteriocidal Keflex and Rocephini when I dared deviating from the Wheldon regime
Thank you for your thoughts
Minai - Neuropathies and
Minai - Neuropathies and paresthesias can be a sign of porphyriai. sorry...
Hope you feel better SOON!
Daisy - Husband on CAPi 5/07. Roxyi, Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6,
Prednisone,Novantrone, Doxyi, Azithromycin, Flagyli, Minoi___________________________________________________________
Daisy - Husband on CAPi 5/07. Roxithromycin, Rifampin, Bactrim DS, Tindamax 6-23, Tetracycline 7-3,
azithromycin, doxyi, minocycline, diflucan, mepron, prednisoneDaisy I am so glad that you
Daisy I am so glad that you are keeping that list active in your memory bank! It is a long list. The more that I think on it the more I thing that the number of afflictions that could be atributable to CPni and secondary prophoria is almost endless!
Minai, may be the reason that it is a bit better on Welchol? Are you taking it more than once a day? Maybe an intensive round for 10 days might be even more helpful. Louise
CFSi/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi, Roxi, Full TiniPulses. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.
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Louise CFSi Began Wheldon CAPi 6/07, Occ. Cholestyramine1-2packets HS/forporphoria&endotoxini sx, S.O.D.3TID(KAL Brand),VitD34000IU, MagnascentIodine 8gtts 1-2x/d, Doxy100BID,Roxi150BID,Tini500mg BIDpulses,CPnPos,BbPos.Summer2008signature.
Thanks, Daisy. All that I do
Thanks, Daisy. All that I do know for sure is that endotoxis are ruling my life. Thus the neuralgia. It certainly is concentrated in feet and hands. And get worse anytime that I eat when bile is being secreted.
Louise, I did try taking Welchol 2, 2/day. then, 1, 2/day. But it was initially making symptoms quite intense with each dose. But am thinking about using charcoal or bentonite clay in conjunction. Wish I could take it at bedtime, but that is when I have to take LDNi. --Minai
Minai, I get it now it is
Minai, I get it now it is for the neurotoxins. I am only taking the Cholestyramine once a day at bedtime and now only during about 10 days during the post pulse cycle. It has been enough to decrease my brainfog, fatigue and emotional lability for me.
Louise
CFSi/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi, Roxi, Full TiniPulsees. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.
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Louise CFSi Began Wheldon CAPi 6/07, Occ. Cholestyramine1-2packets HS/forporphoria&endotoxini sx, S.O.D.3TID(KAL Brand),VitD34000IU, MagnascentIodine 8gtts 1-2x/d, Doxy100BID,Roxi150BID,Tini500mg BIDpulses,CPnPos,BbPos.Summer2008signature.
Batten down the hatches
Batten down the hatches guys. I'm about to go on the radio to talk about this. Switched on this morning to hear a lady talking about having ME and the lack of support and treatment so I called in and explained about CAPi. I'm now waiting for a call back to go on air.
Berkshire, UK. Diagnosed RRMS Feb 4th 2008.
NACi 2400mg. All supplementsi. Doxyi 200mg. Zithi 250mg M/W/F.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAP 20th April 2008.
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Berkshire, UK. Diagnosed RRMS Feb 4th 2008.
NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008. First pulse June 2008
Thanks so much for doing
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
I just explained the basics.
I just explained the basics. Nothing available for many people, little support from the medical profession. Vanderbilt/Stratton/Wheldon plus other research around the world. Bacteria as a possible cause for so many illnesses and gave them this site URL. Didn't go into Chlamydia or the CAPi as I figured it would be too much to take in first thing in the morning. We'll see how it goes. They have my contact details if they want further info.
Berkshire, UK. Diagnosed RRMS Feb 4th 2008.
NACi 2400mg. All supplementsi. Doxyi 200mg. Zithi 250mg M/W/F.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAP 20th April 2008.
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Berkshire, UK. Diagnosed RRMS Feb 4th 2008.
NACi 2400mg. All supps. Doxyi 200mg. Zithi 250mg. Metroi 400mg.
No GP/Neuroi support. Self medicating with help from David Wheldoni.
Started CAPi 20th April 2008. First pulse June 2008
Brava! Sounds like an
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
Hi everyone! Just wanted to
Hi everyone!
Just wanted to share what I and my brother have done.
Last week I called the docs office that most likely treated the most cpni patients in Sweden.He is now half retired and want to do some research.I asked the nurse if she knew some things that I learned here on cpnhelp.org. She did not but could not tell how about the doc. She did find my information very interesting so I wrote a letter to the doctor about cpnhelp.org and some things that I learned here.
I also spoke to another wellknown doctor and reasercher about cpn and cardiovascular problem.I told him about this site and of Capi.He thanked me.
My brother found this site and gave information to his doctor who found it so good that he also told one scientist that last year did a study that cpn cause heart attacks.
We also told several other doctors and gave some information from handbook, but no one wants to treat us.
I also tell everyone that have symtoms that can be cpn about this site.
Things must change here, they seem to belive that cpn is cured with 2 weeks of doxyi.It feels good to try to do something that can help many in future, thats my hope!
Maria