Cpni does live in my oral cavity. It was confirmed by CPR of the granulation tissue from my jaw. Everything else was negative including candida, mycoplasma and staph. Thats just insane.
Although Im doing well right now, I feel discouraged because I wonder at what point does cpn have a hold on you where you cant escape it ever.
The msi clinic finally called me back and booked my MRI. I do know that just based on the way i feel now compared to before that the mri will show less activity, so Im curious to see whether dr stupid #2 will actually acknolege the abxi as the CAUSE of the improvement, Yes I said CAUSE- For any professionals reading this. I need to say it again "CAUSE" of the improvement. Just making that clear.
I wish that an ENT actually would acknolege my sinus issues, but they dont, and its not uncommon for that to happen here in canada. Fat chance that an ENT would actually do a sunis culture or even know what allergic fungal sinusitis is or even how to test for it.
However, just based on my experience, I know that cpn is my biggest problem. Whether cpn keeps the anerobes happy or whether the anerobes keep the cpn happy, is beyond me but they probably keep each other happy. This makes my battle difficult and long term continuous anerobic therapy is hard, really hard.
Ive had diflucan and sporonox before and neither touch on the sinus issue the way that the biaxin did that one time. Which again points to cpn and a plethora of miscellanious partying anerobes. Do i think I will end up with resistance? Probably, but no Dr cares less about my suffering or the gravity of this illness, so for now Im buying presious quality time in good health. I dont think thats unreasonable.
Thanks for listening. 5 more days till my inf dr returns. I'll see whats going to happen from there.
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CPNi pcrii and antibody positive , treating MSi, CFSii, TMJ, trigeminal neuralgia, IBSii neutropenia, pus found in facial bone, Doxyii 100x2,Doxy 200x2 zithro 250x1 alternate days. Metroii pulses each month.
Clammed, Okay, take a deep
Clammed, Okay, take a deep breath. You now have a solid answer you didn't have before. If the two are 'making each other happy', then killing the cpni should take away support for the anaerobes. So, kill the cpn.
I've said this before, but I repeat it every few months. If it came down to eating or getting my meds, I'd get my meds. I was in a very tight financial situation when I was given the 'probable MSi' verdict in August 2005. I had started ordering my meds off the internet when I couldn't find a doctor to prescribe, though I have a great medical plan at work. (No prescriptions, no reimbursement.) I spent three hundred dollars, U.S., on vitaminsi, supps and a doxycycline internet order. I was willing to cancel the newspaper, the cable tv and cut off the air conditioning, if I had to. If it came down to food versus the meds, I'd have been dining at friends' homes, but I was going to get my antibioticsi and other supplementsi, come hell or high water. I figured I could always get out of debt later, once I was healthy enough to do so.
Now, fortunately I found the best doctor, who prescribes, and I'm covered because of that, but the idea is, I was willing to do ANYTHING to kill this disease. You might have to decide to do that, as well.
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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
Clammed, stay with us and I
Clammed, stay with us and I believe that you will win in the end. This bug, it is certainly true, goes everywhere, and thrives.
Please read my blog from a year or so ago about my husband's horrible bad breath disappearing almost overnight. This was very long-standing and had oral complications, all of which have gone. It was over two years, and he was never tested, but to me the cause and effect is very plain. It took about 16 or 17 pulses.
Try to forget about Dr. Stupid - I had one, too. They are not worth the mental energy or the thought they require.
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Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 52 pulses LDNi Rifampin 8/08 again NC USA
EUREKA, you know where the
EUREKA, you know where the bug is, that is the best that can happen!!! That is what I've been saying, try to find where it is located - the base- to do a better treatment!!! to find the CAUSE AND THE CAUSE OF THE CAUSE!!!!!
About the sinus, I've been using the "Silver Sinus Spray" and the miracle has been done; I can move, I can come and write, I sleep and rest, I am starting to have a life! I do the cleaning of the sinus with warm water and salt, and after it, I use the silver sinus. I never stop cleaning my nose and putting things on it during the whole day. I also use the fantastic "sinusin" which is "euphorbium" and it is very helpful too! I am fighting the thing; I don't know if these are the cousins or the CPNi itself but what ever they are they are having to go for ever. I would like to try the Biaxin you mentioned!
You should also use the throat cleaners, bactericidals. I use a lot of listerine and specially the spray form that goes deeper inside the throat!
I guess I also have the CPN in my "cavity" as you mentioned... well it's worthy to fight it!!!
Never give up, never surrender!!!! Together we can!!
Maria
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MariaPatri
Clammed,Yes!!! I've been
Clammed,
Yes!!!
I've been watching and waiting for your test results. I had similar tooth problems, including a large amalgam that cracked during a tumble at a tennis match in the eighth grade[long time ago] The resulting infection crept insidiously over the next ten years unbeknownst to me until much damage had been done. I have learned so much from your tenacity regarding the stealth cpni in your jaw.
Though I wish this had never happened to you, I am quite thrilled that you proved that inept dentist wrong. You followed your gut and came out on top.
Bravo! No doubt you are pleased.
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Began Wheldon Protocol for rrmsi October '05. Currently OFF all abxi since June 26, '08 due to severe porphyriai. Added LDN 4.5mg qhs October '07. All supplementsi.
Take a look at THIS in our
Take a look at THIS in our Research abstracts: http://www.cpnhelp.org/chlamydia_pneumoniae_huma
Yes, it liveth in the oral cavity too. As it infects bone marrow (one of Dr. Stratton's first case was a consultation on bone marrow infection) it can also likely live in the jawbones.
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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
Hi Clammed, All give you
Hi Clammed,
All give you good advice. I agree... try to forget Dr Stooopid. I've had many Dr Stupids in my past and even in my more recent past dealings. In addition to my own issues and treatment I've been dealing w/my daughter's new Drs since she was hospitalized and nearly died and was on 6 wks of IV abxi for her condition. (totally another long story not for this site)
I think there are so many stupid and misled folks out there EVERYWHERE including the health field. I wouldn't doubt Dr Stupid himself has health issues causing his own brain fog, not to make excuses for him/her.
These infectionsi seem to take hold of different folks in different areas. For me it's my skin and nails. For you, your sinuses and mouth. I've been plagued with psoriasis since I was 13 yrs old. For me, my scalp, nails and skin is my "achilles tendon" for chronic infection along with major hormonal issues I've suffered nearly all of my life as well. I've often wondered what it would be like to have normal skin w/o taking toxic harmful meds which only work for a time by suppressing immunei function. But once we can get far enough along treating the infection and have a good healing strategy, I think we will be able to at least manage (if not cure) these chronic conditions.Something you said struck me about whether or not the infection you have can be cured. I think we all hope and pray we can all be cured. I think there's alot more to treating the infection than just trying to kill it off with the right antibiotics. Alot of what we are doing is aiding our immune systems to become stronger. You can't actually kill off ALL infections by targeting them because I think we can be infected with some bugs we've never been tested for or maybe haven't even discovered yet, but there is hope.
The hope is in the science of how the body (specifically the immune system) works.
As described in the book "The Potbelly Syndrome" and probably here somewhere too, if you eradicate enough of any infection to give your immune system the stronghold, your own body will fight back and kill off the rest or most or enough for you to feel and get better. I'm saying all of that because I think some of us may never get rid of every little thing and will always be more at risk for re-infection (my opinion based on reading and observing) while some folks seem to bounce back and never get ill again.
I don't care which I am as long as I can get back some semblence of a life and feel well enough to care for myself, even if I have to take supplementsi and constantly have to fight the bugs off but I'm hoping at some point of not giving in or up that my own body will become strong enough to fight infection on its own the way nature intended.
It does seem that folks that do get better from these infections must continue to feed their bodies with proper nutrition and supplementsi so it can stay healthy forever which reminds me of something an old friend once said while he was working on losing the last of 75 lbs on a liquid diet...
"I can't wait until I'm finished with this diet."
Unfortunately, he gained that weight back again (and more) because he went right back to his old way of eating and has fought all of his life with his weight. OTOH, I was a chubby little kid and lost the weight and have only had a few episodes in my life when I regained some weight but have since learned how to manage weight with proper eating and ways of dealing with stressors which used to cause me to gain weight in the past so I could permanently keep it off. I have to always be aware that I can go back there, unlike some folks that never gain weight no matter what.
My point is...
Staying healthy may always be an uphill battle for most of us, for whatever the reason, whether it be geneticsi or infection, but once we have the solution to doing so, I think that's more than half the victory, just knowing how to do it.
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NACi 2400 mg, Zithi 250mg/MWF, minoi 100mg/BID, Tinii 500mg/BID pulses, Iodoral 37.5mg, Supps, CFIDSi/FMSi, Hashimoto's, Psoriasis, PA, IBSi, Secondary Addisons
Don't believe everything you think!HiCant talk right now but
Hi
Cant talk right now but will reply as soon as i can. Dr intelligent bumped me up to 400 doxyi. Im tolerating it ok so far. Should i continue zithro 250 every other day? I think i should, what do you all think? Also, will i have problems with the liver if i do a metroi pulse? Thanks
janie
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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.hey Janie, good to see you
Hey clammed,so happy you
Hey clammed,
so happy you got some real answers, that is great! YAY for Dr. Big Brain!
The increase in doxyi is twice what we take so with the Azith it will, imhoi only, make a difference in the die off. Start taking the moppers, boosting their #'s up to coincide.
Perhaps others opinion will be to take less of the Azith, I am not a science person. What would Dr. BB say about this?
Keep on keeping on! expecting the unexpected!
r
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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#13 1240 mg X 3 days 8-7-08Don't change the azith; you
Don't change the azith; you are already tolerating it. Why go backwards?
I wouldn't go anywhere near a flagyli pulse until you know you are tolerating the higher dose of doxycycline well.
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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
Janie, hooray for you and
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Combined Antibiotic Protocol minocycline, azithromycin, metronidazolei for muscle pain, insomnia, interstitial cystitisi, sinus, disphonia, dry eyes, stiff neck, veins, thyroid, TMJ.
Mac, I agree, cpni is
Mac, I agree, cpni is supporting the anerobes. I’m going to go after the cpn. But yes I already do everything I can to do what I have to do short of selling my body for money. Im getting my food from the food bank so I can pay the co-payments on my meds, I accept any offer for dinners, my car is falling apart, I have no home phone, no net, not even a decent pair of jeans... and all this from a girl with a university education. Cpn has stolen my life, it takes a serious financial toll to be sick. But yes I hear what you are saying when it comes to doing what you have to do. As far as the zithromax goes, im just scared that too much antibiotics = diaherrea and dysbiosis, butIll
Katman, how do I search for that blog?
Maria, Im going to start doing sinus cleanses. I think that neilmed stuff is pretty good. I don’t have any mucus though, just large inflammationi. Ive used eupitiborium before, didn’t find it much help though.
Kitkat, lately ive been feeling tempted to go down there and tell him off, along with the other dr stupid inf dis at the main hospital… but they aren’t worth it, they are both too stupid and egotistical to believe it anyway.
Jim, remember how I was off the doxyi zithro combo for only 2 days.. well guess what. I bred an entire population in those 2 days because I have neutropenia again. The new doxy dose is working well though, hopefully I can get this under control again.
Rennie, its just scarey for me because it really affects my brain. I feel like if I don’t take the abxi my brain gets infiltrated and I start to become like a mental patient. That really scares me because we need our wits about us to make sure we can control the course of our treatment. It will be interesting what the ms dr says after my next brain mri coming up because I know it will show a decrease in activity or at the very least nothing new. Hes so stupid though he probably wont acknolege it.
Ruthless, doxy is going well so far. No porpheria, maybe it is true that the cpn associated aquired porpheria is from cpn infection of the liver. Maybe when the liver is cleared of it, the porpheria subsides, however, One can never be sure. Porpheria sometimes just creeps up from nowhere.( expect the unexpected yes ) By the way, does anyone have a professional/journal link to the any cpn/porpheria hypothisis’s?
Vik, the doxy 400 is working well for me. I got a kick out of it, felt it penetrate my facial muscles and sinuses very well. Amazing how 100 doxy pill put me ill in bed with glands so swollen they were about to pop out my neck in the beginning and now doxy 400 is going down like candy. Scarey as well though. Hope you are doing well. What do you think of the cpn/liver/porpheria hypothisis? I think it seems to be accurate.
Janice, you know what dr intelligent told me he does? At night he has a pile of papers becide his bed on the floor that people/patients have brough to him ( research ) and he just reads each paper until he falls asleep and he does it every nite. He never stops educating himself, he is a real dr, bless him. If anyone saves me it will be him. I just hope the day never comes when he gives up on me because I dont think he has a ever had a patient so heavily infected with cpn... I think I could be a poster child at this point, I guess we all could couldnt we.. hey wait, I guess we are;
My poster slogan:
" SAY NO TO MS MEDS, SAY YES TO CAPi"
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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.Hi clammed, I just saw
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Rica PPMSi EDSSi 6.7 at beginning - now 2. Began CAPi Sept, 2004 with Rifampin 150 mg 2xd, Doxyi 100 mg 2xd, added regular pulses Jan 2005. Jan 2006 switched to Doxy, Azith, cont. flagyli total 52 pulses LDNi Rifampin 8/08 again NC USA
Hi clammed up !I send you a
Hi clammed up !
I send you a private message to your inbox.
Regards Cesare
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Male 35 years (Hamburg-Germany),CFIDSi, IBSi, Enterovirus, Cpni for years positive,Enterovirus. Started Capi on 02/19/08, Currently NACi 2400, Doxyi 2x100, azi. 500, tinii pulses
clarithromycin 2x500, metroi pulses, 12 g calcium pyruvat