LymeMD posting on subject of CPNi.
What I have not yet discussed is the controversial notion that Lyme causes "everything." Well, not everything, that's a slight exaggeration. This version of the Lyme paradigm suggests that chronic fatigue syndromei is really Lyme disease. Fibromyalgiai is really Lyme disease. Lyme infection triggers autoimmune disease in persons who are genetically inclined such as MSi, Lupus, and Rheumatoid arthritis. And many are convinced that Lyme is the key to Alzheimer's disease.
Their are a group of physicians who are doing parallel research. They believe that Chlamydia pneumonia, or CPN, is the cause of everything. This group of devotees believes CPN causes fibromylagia, chronic fatigue syndrome, Alzheimer's disease and a host of autoimmune and chronic inflammatory disorders.
These two infectionsi intersect at the word L-form. Both exist as intracellulari organisms called L-forms. CPN has a 3 phase life cycle which is somewhat reminiscent of Lyme. CPN is very hard to kill. Studies show that it takes months or years of combination antibiotic therapy to eliminate this organism. CPN is ubiquitous. It is common respiratory pathogen, not to be confused with its cousin Chlamydia trachomatis, a sexually transmitted pathogen.
Most of the research on CPN has been done at The Vanderbuilt School of Medicine. The chief expert in this area is Dr. Charles Stratton. Dr. David Weldon, a researcher and clinician in England has provided compelling evidence showing a link between CPN and MS. He reports anecdotal evidence of his success in treating MS patients.
More startling is the work of Dr. Martz, a victim of ALS, Lou Gehrig's disease. He was shown to be infected with Lyme. Intravenous treatment with Rocephini caused a remission of his otherwise fatal illness. He has treated both ALS and MS patients for Lyme and met with some success. However, his findings have not yet been published.
Protocols for treating CPN include Amoxicillini, Docycyline, Zithromax and Flagyli. Interesting. These are all Lyme drugs. Dr. Stratton has also recommended Rifampin, which at times is very effective as a Lyme therapy. He also recommends INHi, an anti-Tuberculosis drug, which most physicians avoid because the risk of liver toxicity is substantial.
Many patients evaluated for Lyme have high antibody titers to CPN. Since it is an intracellular germ it is difficult, like Borrelia, to prove it is causing active infection. However laboratory experiments attest to its hardyness and its uncanny ability to defeat both the immune system as well as antibioticsi. These two areas of research and treatment have been sparate from one another.
Again the commonality is the idea of chronic L-form infection leading to a host of consequences. Patients with a high L-form burden may be more likely to have vitamin Di dysfunction with reversal of normal levels, as described by Marshall.
The importance of CPN may be that simultaneous infection with Borrelia makes treatment more challenging. It may help direct the choices of antibiotics as well as the likely duration of treatment.
CPN is not a Lyme co-infection because it is not tick borne. It may ultimately be of much greater importance than the usual co-infections that are stressed by most "Lyme" doctors.
Most "Lyme literate MDs" do not discus CPN. Doctors who specialize in CPN, there are not many of them at this time, seem to be unaware of Lyme literature.
I believe the integration of these two areas will eventually lead to newer thinking and treatment for what is becoming rather than just Lyme disease, but the Lyme complex syndrome.
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Daisy - Husband on CAPii 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
Thanks Daisy, As you know I
Thanks Daisy, As you know I have both chronic L-form infectionsi. I see CPni as primary as I have certainly had it many more years. The event of Bb may have tipped the scale for me possibly. This past spring I went to a Lyme Educational Talk give by a LLMD. Low and behold this year the slide included Cpn on the list of co-infections.
What I have learned here at CPn has more specificity for the patient in regards to outlook ( more hope less massive fear) and some solid suggestions for ways to deal with the side effects of long term combined antibiotic protocolsi. For me so far I am getting weller and I know enough not to stop treatment just because I can now seem more normal again.
So glad you posted this discussion and hope it moves forward with some interesting conversation.
Louise
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Louise CFSi, CPN+/Bb+,Wheldon CAPi 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai & Endotoxinsi PRN, Doxyi 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
Good girl Daisy! This is
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Joyce~caregiver-advocate in Dallas for Steve J (SPMSi). CAPi since August 06, Cpni, Mpn, B. burgdorferi, systemic candidiasis, EBVi, CMV & other herpes family viral infectionsi, elevated heavy metals, gluten+casein sensitivity.
Yes, not only is it
Yes, not only is it important to be tested for lyme and Cpni, but also for various viruses such as HHV-6, EBVi and enterovirus.
These pathogens can give the same symptoms. That's why it's best to do the lab work, then based on history, symptoms and lab results decide what is the most likely cause of your problems and design treatment from there.
It is possible to be infected with more than one pathogen.
Timaca
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Diagnosed with lyme disease 3/05. Diagnosed with chronic HHV-6, EBVi, VZV, and HSV1 6/07. Diagnosed with CPni 5/08. On antibioticsi for 2+ years, Valcyte (antiviral drug) for 9 months. Currently on 100 mg doxyi bid for Cpn and acyclovir for viruses.
http://www.lymeinducedautism
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Cured of multiple sclerosisi, stopped the Wheldon's protocol in Nov,2008. EDSSi 0 for over 5 years.
Daisy- Just got to this.
Daisy- Just got to this. It's really quite a good intro to those who are coming from the Lyme's community and trying to understand Cpni as a co-infection. The only correction I'd make is that it's not true that Vanderbilt has been the center for Cpn research. It would be accurate to say that Dr. Stratton and his group at Vanderbilt are the only ones whose research has come up with a treatment protocol that covers all the phases of the organism. There are a lot of places around the world researching Cpn, but no one seems to know about the Combination Antibiotic protocol needed, nor about secondary porphyriai, nor the antibodies to B-12 that develops from that.
Cleaned up, this would be a great article for the Handbook.
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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
Excellent post. My old
Excellent post.
My old enviornmental medicine dr refused to acknolege my cpni and from what i know to this day that he is not using naci or any other thiol reducing agents on his lyme patients with cpn nor is he verbally acknoleging cpn as a major participant. He still has alot of chronically ill "lyme" / cpn patients who are on "lyme only" abxi for many years. I always look back and think about when he and I had our big fight about cpn vs lyme. Im glad it brought me here instead. Your post says it all correctly, there needs to be an intergrated treatment and understanding for both clinical and confirmed lyme/cpn cases. Lets not forget mycoplasma either.
This is a good post daisy, thanks for writing it, it will be helpful for those trying to understand the roots of cfsi and msi etc...
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CPNi pcri and antibody positive , treating MSi,
CFSi, TMJ, trigeminal neuralgia,IBSineutropenia, pus found in facial bone,Doxyi 100x2,Doxy 200x2 zithro 250x1 alternate days. Metroi pulses each month.Thanks for posting this,
Thanks for posting this, Daisy. Valuable to me, as proof that the LLMDs in my area have been forced to seriously consider Cpni evidence and the Vanderbilt protocolsi and the Wheldon regime. And, to prescribe CAPi. I can almost guess who the LLMD is who wrote that. While it may not be mine, it is obviously one in close association. I'd like to think that I am one of the patients who has contributed to spreading the word to them, by demanding CAP. They, in turn, are creating their own theories and getting the word out to colleagues, nationally and world-wide. Am just glad to read this proof of it.
RRMSi, 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. IV Clindamycin 5/08.Barbara - Thanks for
Barbara -
Thanks for posting this! Excellent presentation that I hadn't seen before.
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Daisy - Husband on CAPi 5/07. "When Going Thru Hell, Just Keep Going", Winston Churchill
Thanks Daisy. I found it
Thanks Daisy.
I found it very useful.
B.
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Cured of multiple sclerosisi, stopped the Wheldon's protocol in Nov,2008. EDSSi 0 for over 5 years.
Thanks Daisey for the
Thanks Daisey for the thread and Barbara for the website and link to presentation.
Louise
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Louise CFSi, CPN+/Bb+,Wheldon CAPi 6/07, Cholestyramine 1-2 pks @ HS for Porphyriai & Endotoxinsi PRN, Doxyi 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
Thanks for the post;cpni
Thanks for the post;cpni and lyme is a hard stuff and I have both...unfortunately the lyme diet is the opposite of cpn diet...the abxi regimens are quite similar;I agree that most lyme docs don't know well cpn...Good luck to everibodies I'll let you know my results...I am on bicillin,zitro,plaquenil,rifampin and tinidazole pulses plus naci and other supplementsi including questran (i am actually completing the protocol)...
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Wow, Colyn. That's quite a
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CAPi for Cpni 11/04. Dx: 25yrs CFSi & FMSi. Currently: 150mg BID Roxithromycin, Doxycycline 100mg BID, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3
I would like to reply to
I would like to reply to lifeontheice. Thanks for the link!!
Hey you say you are cured for MSi? have you told your story here? would be very good to others!!!
Thanks a lot
maria
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God bless you all.
MariaPatri - living in a rollercoaster! (In Orlando, Fl).
Thyroiditis, sinus infection, heart, muscles and joints.
Please look at the link
Please look at the link that lifeontheice mentioned. It talks about Lyme in a very professional perspective. It has very good information. At the beginning presenting some cases I see most patients got better when using "Rocepphin". Go to page 22 and see the chart they did to show the "interactions", wow! and page 47 shows "What the clinical state of the infection mimic"? lupus, Rheumatoid arthritis, Msi, Parkinson's, Thyroid, Fobromyalgia, and more... all we have read here! The one thing I didn't read in that report was anything related to CPNi... ? Ignored the bug?
Again the link is:
http://www.lymeinducedautism.com/images/Lymewhat_is_it_part_3,_LIA.pdf
God bless
Maria
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God bless you all.
MariaPatri - living in a rollercoaster! (In Orlando, Fl).
Thyroiditis, sinus infection, heart, muscles and joints.
Hi Maria, They ignored us,
Hi Maria,
They ignored us, but we know our side. It only widens our horizons.
B.
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Cured of multiple sclerosisi, stopped the Wheldon's protocol in Nov,2008. EDSSi 0 for over 5 years.