OK Minai, I posted something to hopefully explain things to them. Good catch!

Berkshire, UK. Diagnosed RRMSi [2] Feb 4th 2008.

NACi [3] 2400mg. All supplementsi [6]. Doxyi [7] 200mg.
No GP/Neuroi [8] support. Self medicating with help from David Wheldoni [9].
Started CAPi [10] 20th April 2008.

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Berkshire, UK. Diagnosed RRMSi [2] Feb 4th 2008.

NACi [3] 2400mg. All supps. Doxyi [7] 200mg. Zithi [11] 250mg. Metroi [12] 400mg.
No GP/Neuroi [8] support. Self medicating with help from David Wheldoni [9].
Started CAPi [10] 20th April 2008. First pulse June 2008

I just signed up, too. Minai, your neuropathy hasn't affected your research abilities!

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 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 [13], CFIDSi [14]/FM- diagnosed: 6/07; IBSi [15], prior kidney infectionsi [16], food allergies, hypothyroid (RAI for Graves in 1998), Adrenal issues; prior bronchitis/sinus problemsi [17]. 200 mg/doxyi [7] daily & 250 mg AZITH M/W/F, supplmnts

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JeanneRoz~CPNi [18] diagnosed & started protocol 4/2007, also HHV6, EBVi [13]. CFIDSi [14]/FM diagnosed: 6/07; 100mg/doxyi [7]/BID ~ 250 mg AZITH M/W/F ~1st Tinii [19] pulse 4/17/08- 1 250 mg. tab for 2 days. Pulse 5: 9/28/08, 250 mg TINI BID, 3 days. Sup

I think I've found another MSi [20] 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 RRMSi [2] Feb 4th 2008.

NACi [3] 2400mg. All supplementsi [6]. Doxyi [7] 200mg.
No GP/Neuroi [8] support. Self medicating with help from David Wheldoni [9].
Started CAPi [10] 20th April 2008.

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Berkshire, UK. Diagnosed RRMSi [2] Feb 4th 2008.

NACi [3] 2400mg. All supps. Doxyi [7] 200mg. Zithi [11] 250mg. Metroi [12] 400mg.
No GP/Neuroi [8] support. Self medicating with help from David Wheldoni [9].
Started CAPi [10] 20th April 2008. First pulse June 2008

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 [18] Brain fog, remind you of anyone?????

CFIDSi [14]/ME 26yrs, FMSi [21], IBSi [15], EBVi [13], CMV, Cpn, chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [3] 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

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CFIDSi [14]/ME 32 yrs, FMSi [21], IBSi [15], EBVi [13], CMV, Cpni [18], chronic insomnia, Lymes, HME, Natural HRT peri-M, NACi [3] 2.5 gm, 6-07 Doxy 200 mg day pm, Azith 375 mg M/W/Fday, Pulse#14 1000 mg X 5 days 9-19-08

Here's what I posted over there just now. Andesine, you can edit by using that little icon at the top right of your post (on that site). Hi, I'm another one on the Vanderbilt-based protocol for chlamydia pneumoniae. We won't hijack your board, but one of our members said people here were asking about cpni [18] infection. Anyway, to answer the 'what the hell is this' question, cpn (chlamydia pneumoniae) is a bacterial infection that mostly hides inside your cells, rather than riding on the outside like most infectionsi [16]. This is why it's so hard to test for (amazing your doctors found it! congratulations!). Normal tests find antibodies in the blood. With cpn, antibodies are rare, as the white cells only recognize a threat they can 'see' and they can't 'see' cpn when it's hijacked a cell and multiplying inside, stealing the cell's energy for its own use. Chlamydia pneumoniae is NOT the sexually transmitted disease chlamydia trachomatis and should not be confused with it. It's common and around seventy percent of the population has been exposed to it by age fifty. Many diseasesi [22] thought to be attributed to 'aging' or 'old age' are now being seen as cpn-involved, such as rheumatoid arthritis, irritable bowel, multiple sclerosis, chronic fatigue, some heart conditions, anemia (cpn uses loads of iron to survive)... Yes, the cpnhelp.org site is sort of complicated. (We're working on that.) But, if you just want to know the basics, you can either use that 'Getting Started' tab at the top or you can read UK microbiologist Dr. David Wheldoni [9]'s pages on using the protocol for multiple sclerosis. If the link I insert here doesn't work, just google the words in my previous sentence. http://www.davidwheldon.co.uk/ms-treatment.html [23] The basic protocol is the same, regardless of whether you use it for MS, Lyme, chronic fatigue, etc. The folks at Vanderbilt University did a study a few years ago and wrote up a patent for this treatment, then released the patent to the public for humanitarian reasons, as they'd had such good results with treatment. (This way, no one gets to profit from their work, except, of course, the patients who are treated.) All of the meds are commonly used and most are available as generics. (Basically, it's 200mg doxycycline daily, 250mg of azithromycin on Mon, Weds, Fri, and - for five days out of the month, you add in 1000 to 1500mg/day of metronidazolei [12]. The cocktail is necessary to kill the bacteria in all three phases of its life evolution.) I post under the same name over there, so feel free to pm me over there once you've read the basics. The board is full of nice people, sniping is unbelievably rare and, since we've all been sick, we are very understanding of brain fog and impatience. Me, I was diagnosed with probable MS in August 2005, went on this protocol in October of 2005 and have recovered probably 98%. Not bad for an 'incurable' disease... I hope this helps answer a few questions for you.

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 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 [18] though. Is this a sign that they're finally getting the message?

Berkshire, UK. Diagnosed RRMSi [2] Feb 4th 2008.

NACi [3] 2400mg. All supplementsi [6]. Doxyi [7] 200mg.
No GP/Neuroi [8] support. Self medicating with help from David Wheldoni [9].
Started CAPi [10] 20th April 2008.

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Berkshire, UK. Diagnosed RRMSi [2] Feb 4th 2008.

NACi [3] 2400mg. All supps. Doxyi [7] 200mg. Zithi [11] 250mg. Metroi [12] 400mg.
No GP/Neuroi [8] support. Self medicating with help from David Wheldoni [9].
Started CAPi [10] 20th April 2008. First pulse June 2008

I want to know who the doc IS, so Michele can add him to our private list. Perhaps I'll pm the poster... Ummm, it still says 'virus'. I think you changed one, but not the later one. Last sentence in the next-to-last paragraph, as I recall.

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

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

 

 

RRMSi [2], diagnosed 2/04. NACi [3] 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 [5] 3/08. USA

 

 

 

 

 

 

Oh bums bums bums......

Berkshire, UK. Diagnosed RRMSi [2] Feb 4th 2008.

NACi [3] 2400mg. All supplementsi [6]. Doxyi [7] 200mg.
No GP/Neuroi [8] support. Self medicating with help from David Wheldoni [9].
Started CAPi [10] 20th April 2008.

___________________________________________________________

Berkshire, UK. Diagnosed RRMSi [2] Feb 4th 2008.

NACi [3] 2400mg. All supps. Doxyi [7] 200mg. Zithi [11] 250mg. Metroi [12] 400mg.
No GP/Neuroi [8] support. Self medicating with help from David Wheldoni [9].
Started CAPi [10] 20th April 2008. First pulse June 2008

Minai, I've learnt a bit of restraint (she nods in Jim's direction and smiles) and can only hope a few people wander over here and read some of our patient stories and the simple start-up info. Thanks for noticing that thread. Hope you're feeling better!

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 on LymeNet? What a lot of good you've done, by sending us over there to talk! I think a lot of people will be helped by it! Many, many questions!

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 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 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 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 [24]/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi [7], Roxi, Full TiniPulses. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

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Louise  CFSi [24], CPN+/Bb+, Wheldon CAPi [10] 6/07, Cholestyramine 1-2 pks @ HS for Porphoria & Endotoxinsi [25] PRN, Doxy100daily, Roxi300BID, Tinii [19] 500mgBID pulses, VitD3-4000IU, Magnascent Iodine,{S.O.D.3/QD[KAL Brand], +Pyruvate 3.75G +SAM-e For Energy support

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 [26]

 

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 [27], but all of LPSi [28]. Caused, no doubt, by the bacteriocidal Keflex and Rocephini [5] when I dared deviating from the Wheldon regime

Thank you for your thoughts

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 [24]/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi [7], Roxi, Full TiniPulsees. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

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Louise  CFSi [24], CPN+/Bb+, Wheldon CAPi [10] 6/07, Cholestyramine 1-2 pks @ HS for Porphoria & Endotoxinsi [25] PRN, Doxy100daily, Roxi300BID, Tinii [19] 500mgBID pulses, VitD3-4000IU, Magnascent Iodine,{S.O.D.3/QD[KAL Brand], +Pyruvate 3.75G +SAM-e For Energy support

Minai - Neuropathies and paresthesias can be a sign of porphyriai [27].  sorry...

Hope you feel better SOON!

^{Daisy - Husband on CAPi [10] 5/07.   Roxyi [5], Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxyi [7], Azithromycin, Flagyli [12], Minoi [29]}

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Daisy - Husband on CAPi [10] 5/07.  "When Going Thru Hell, Just Keep Going", Winston Churchill

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 [18] 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 [24]/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxyi [7], Roxi, Full TiniPulses. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

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Louise  CFSi [24], CPN+/Bb+, Wheldon CAPi [10] 6/07, Cholestyramine 1-2 pks @ HS for Porphoria & Endotoxinsi [25] PRN, Doxy100daily, Roxi300BID, Tinii [19] 500mgBID pulses, VitD3-4000IU, Magnascent Iodine,{S.O.D.3/QD[KAL Brand], +Pyruvate 3.75G +SAM-e For Energy support

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 [4]. --Minai

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 [10]. I'm now waiting for a call back to go on air.

Berkshire, UK. Diagnosed RRMSi [2] Feb 4th 2008.

NACi [3] 2400mg. All supplementsi [6]. Doxyi [7] 200mg. Zithi [11] 250mg M/W/F.
No GP/Neuroi [8] support. Self medicating with help from David Wheldoni [9].
Started CAP 20th April 2008.

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Berkshire, UK. Diagnosed RRMSi [2] Feb 4th 2008.

NACi [3] 2400mg. All supps. Doxyi [7] 200mg. Zithi [11] 250mg. Metroi [12] 400mg.
No GP/Neuroi [8] support. Self medicating with help from David Wheldoni [9].
Started CAPi [10] 20th April 2008. First pulse June 2008

Thanks so much for doing this! Let us know how it went.

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. 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 [10] 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 RRMSi [2] Feb 4th 2008.

NACi [3] 2400mg. All supplementsi [6]. Doxyi [7] 200mg. Zithi [11] 250mg M/W/F.
No GP/Neuroi [8] support. Self medicating with help from David Wheldoni [9].
Started CAP 20th April 2008.

___________________________________________________________

Berkshire, UK. Diagnosed RRMSi [2] Feb 4th 2008.

NACi [3] 2400mg. All supps. Doxyi [7] 200mg. Zithi [11] 250mg. Metroi [12] 400mg.
No GP/Neuroi [8] support. Self medicating with help from David Wheldoni [9].
Started CAPi [10] 20th April 2008. First pulse June 2008

Brava! Sounds like an auspicious 'appearance'!

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 share what I and my brother have done.

Last week I called the docs office that most likely treated the most cpni [18] 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 [10].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 [7].It feels good to try to do something that can help many in future, thats my hope!

Maria