MediTest
27 Apr 2018
Author
Minai
Title

Yes. Word is getting around.

Body

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. NAC 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 Rocephin 3/08.

Comments

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

Berkshire, UK. Diagnosed RRMS Feb 4th 2008.

NAC 2400mg. All supplements. Doxy 200mg.
No GP/Neuro support. Self medicating with help from David Wheldon.
Started CAP 20th April 2008.

Berkshire, UK. Diagnosed RRMS Feb 4th 2008.NAC 2400mg. All supps. Doxy 200mg. Zith 250mg. Metro 400mg.No GP/Neuro support. Self medicating with help from David Wheldon. Started CAP 20th April

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

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, EBV, CFIDS/FM- diagnosed: 6/07; IBS, prior kidney infections, food allergies, hypothyroid (RAI for Graves in 1998), Adrenal issues; prior bronchitis/sinus problems. 200 mg/doxy daily & 250 mg AZITH M/W/F, supplmnts

JeanneRoz ~ DX'd w/ CPN 4/2007; 6/07 -"officially" dx'd w/CFIDS/FM; also: HHV6, EBV, IBS-C, 100 Doxy:BID; 500 mg Biaxin BID; Tindamax Pulses, B12 shots, ERFA Dessicated Thyroid,Cortef, Iodoral 25 mg, Vit D-6,000 uni

I think I've found another MS 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. Image removed.

Now I just have to remember my password.  

 

Berkshire, UK. Diagnosed RRMS Feb 4th 2008.

NAC 2400mg. All supplements. Doxy 200mg.
No GP/Neuro support. Self medicating with help from David Wheldon.
Started CAP 20th April 2008.

Berkshire, UK. Diagnosed RRMS Feb 4th 2008.NAC 2400mg. All supps. Doxy 200mg. Zith 250mg. Metro 400mg.No GP/Neuro support. Self medicating with help from David Wheldon. Started CAP 20th April

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 cpn 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 infections. 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 diseases 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 Wheldon'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

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 metronidazole. 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

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 cpn though. Is this a sign that they're finally getting the message?

Berkshire, UK. Diagnosed RRMS Feb 4th 2008.

NAC 2400mg. All supplements. Doxy 200mg.
No GP/Neuro support. Self medicating with help from David Wheldon.
Started CAP 20th April 2008.

Berkshire, UK. Diagnosed RRMS Feb 4th 2008.NAC 2400mg. All supps. Doxy 200mg. Zith 250mg. Metro 400mg.No GP/Neuro support. Self medicating with help from David Wheldon. Started CAP 20th April

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

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 bums......

Berkshire, UK. Diagnosed RRMS Feb 4th 2008.

NAC 2400mg. All supplements. Doxy 200mg.
No GP/Neuro support. Self medicating with help from David Wheldon.
Started CAP 20th April 2008.

Berkshire, UK. Diagnosed RRMS Feb 4th 2008.NAC 2400mg. All supps. Doxy 200mg. Zith 250mg. Metro 400mg.No GP/Neuro support. Self medicating with help from David Wheldon. Started CAP 20th April

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 CPn Brain fog, remind you of anyone?????

Image removed.

CFIDS/ME 26yrs, FMS, IBS, EBV, CMV, Cpn, chronic insomnia, Lymes, HME, Natural HRT peri-M, NAC 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

CFIDS/ME, FMS, MCS, IBS, EBV, CMV, Cpn, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplements+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyl/day-5 days<

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.Image removed.

 

--Minai

 

 

RRMS, diagnosed 2/04. NAC 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 Rocephin 3/08. USA

 

 

 

 

 

 

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

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

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!  Image removed.  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

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

CFS/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxy, Roxi, Full TiniPulses. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

MacK, maybe (sigh)...Thinking one thing while typing another...meant neuropathy (numbness), not neuralgia (pain)Image removed.

 

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 porphyria, but all of LPS. Caused, no doubt, by the bacteriocidal Keflex and Rocephin when I dared deviating from the Wheldon regimeImage removed.

Thank you for your thoughtsImage removed.

Minai - Neuropathies and paresthesias can be a sign of porphyria.  sorry...

Hope you feel better SOON!

Daisy - Husband on CAP 5/07.   Roxy, Diflucan round three 4-4, Rifampin, Bactrim DS, Mepron 4-6, Prednisone, Novantrone, Doxy, Azithromycin, Flagyl, Mino

Daisy - Husband on CAP 5/07.  Husband died from Acute Myelogenous Leukemia Secondary to the Infusion of Novantrone.  Ie - the treatment with the conventional MS drugs killed him. Daisy on her own CAP 11/2012. 

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 CPn 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

CFS/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxy, Roxi, Full TiniPulses. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol 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 LDN. --Minai

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

CFS/ME.CPnPositive.BbPositive.WheldonCAPbegan6/24/07. NowNAC,Doxy, Roxi, Full TiniPulsees. Cholestyramine at BedtimeforPhorphoria&liposacarideEndotoxinDie-OffExperiences.

  • CAP(TiniOnly): 06/07-02/09 for CFS
  • MethylationProtocolSupplements: Started08/08
  • Intermtnt CAP: 02/09-02/10
  • Full MethylProtocol & LDN 02/09
  • Off CAP: 02/10, cont LDN & MethlyProtocol support

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 CAP. I'm now waiting for a call back to go on air.

Berkshire, UK. Diagnosed RRMS Feb 4th 2008.

NAC 2400mg. All supplements. Doxy 200mg. Zith 250mg M/W/F.
No GP/Neuro support. Self medicating with help from David Wheldon.
Started CAP 20th April 2008.

Berkshire, UK. Diagnosed RRMS Feb 4th 2008.NAC 2400mg. All supps. Doxy 200mg. Zith 250mg. Metro 400mg.No GP/Neuro support. Self medicating with help from David Wheldon. Started CAP 20th April

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

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 CAP 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.

NAC 2400mg. All supplements. Doxy 200mg. Zith 250mg M/W/F.
No GP/Neuro support. Self medicating with help from David Wheldon.
Started CAP 20th April 2008.

Berkshire, UK. Diagnosed RRMS Feb 4th 2008.NAC 2400mg. All supps. Doxy 200mg. Zith 250mg. Metro 400mg.No GP/Neuro support. Self medicating with help from David Wheldon. Started CAP 20th April

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

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 cpn 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 Cap.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 doxy.It feels good to try to do something that can help many in future, thats my hope!

Maria

 

Cpn since sep 2006. Autoimmune thyroid,hypofunction.levaxin,b12+folic acid.All classic cpn,porphyria and toxinsymtoms.Not able to work.Selftreating cpninfection with AllicinMax(garlic), NAC, high vitamin D3. CAP for over 3 years. Back to work and life