Hi. Been reading this site for hours, but wanted to leave a psot here and get some feedback....
Wanted to know more about CPNi. Have been in bad health with mysterious illness for years. No help from doctors
Started with following symptoms:
Ridiculous headache for about a week that eventually subsided.(worst headache of my life).
3 weeks later I started having pain all over the place, involuntary muscle contractions and what looked like inflamed cappilaries on legs and hands.
As this progressed my limbs became extremley heavy and have stayed that way....(several CT scans were unrevealing)
Joints that hurt so bad I wanted to scream...
Now, years later, this thing is like in it's final or worst stage and feels like it is killing me.
body is overlaoding with toxins...Circulation is poor...I'm starting to swell up. Joints hurt even more now. Bad back pain for me and my spouse.
HERE IS THE KICKER....
My wife started having some weird symptoms such as arthritis/back pain and stuff. So she goes and has a routine physical and up pops a positive chlamydia test(which really shocked us both). We are not the type to cheat on each other and have not done so. So if we had this it had to have been for quite some time.
I understand that the STDi Trachomas(spelling?) is not the exactly the same as CPN. However, it is both chlamydia and the infection is treated with anti biotics. So there are similarities. I guess it's the same family of bacteria...
I'm in badshape and may not have time to convince a doctor to even look into this. most of the time they just blow you off as soon as you open your mouth. ESPECIALLY if you have a history of symtpoms they cant treat andhave diagnosed you as psychosamatic.
My questions are many but I'll try and condense it the best I can:
A.) Can a positive urine test for chlamydia(Std version) indicate CPN infection? Like how sensitive are the tests?
B.) Is there a laboratory that I can go to and get tested specifically for CPN on my own? Anyone know of a good one? Labcorp? Do I need to bring the specimen or do they draw it? How much does it cost if you pay out of pocket?
C.) In the event that the doctor tells me I'm nuts and refuses to help me(likely)..is there a recommended antibiotic regime? I inderstand this is very risky business and should be under doc's supervision, but I may not have that kind of time. So what is the usual protocol/regime? I know there are like 2 or 3 that need to be taken continuiosly in order for treatment to be effective.
D.) Anyone know of a good site to get the antibioticsi from in case I can not get a rX for it? I have seen a few but would like any feedback on this.
I understand nobody here is a doctor and dont want that to discourage you from replying. I appreciate all feedback you may give me as I'm desperate right now.
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If you don't mind telling
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minocycline, azithromycine, metronidazolei 2007-2009, chelation for lead poisoning, Lauricidin: muscle pain, insomnia, interstitial cystitisi (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (all well now)
I'm in San Antonio, Texas.
I'm in San Antonio, Texas.
Thinking about just hitting up a alternative med doc and asking for a prescription.
breaking- did you also get
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CAPi for Cpni 11/04. Dxi: 25yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, Tinii 1000mg/day pulses; Vit D2000 units, T4 & T3, 12mg Iodoral
hey..yeah I got tested and
hey..yeah I got tested and they gave me a gram(I think ) of zithro because my wife was positive. Still waiting for my results.
I thought the sTDi was for the most part pretty localized in the pelvic region but can also hit the eyes and joints.
I was looking at a chart for lyme disease symtpoms and I have so many of them that I'm thinking it may be multiple stuff going on.
Some chlamydia tests are
Drug deliveryca.com (canada
Drug deliveryca.com (canada drugs) is a reliable source, if you choose to go that route.
The STDi is chlamydia trachomatis. The lung-related infection, cpni, is chlamydia pneumoniae.
It's unlikely your doctor tested for cpn, unless specifically requested, but you'll have to check with the doctor. A course of abxi for trachomatis will not be anywhere near enough treatment to kill off cpn, if you have it.
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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 suspect the similarity
I suspect the similarity between the antibiotic protocol for CPni and that used for Lyme, may explain why so many Texas doctors seem to be reluctant to prescribe the treatment. You can read about the Lyme disease controversy that may be spilling over to us at this web site: http://www.standupforlyme.org/
That doesn't mean you won't find someone to prescribe, just that you may have to look longer.
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CAPi for M.S. 8/2007 - 3/2009. Twentieth pulse metronidazolei + INHi completed 3/12/2009. Intermittent treatment thereafter until 8/7/2009.
Update...just got my results
Update...just got my results for Chlaymdia trachomatis...negative.
Just adds to the weirdness of my case. Wife is postivie, I am negative. I'm trying to tell her to ask her doc if the test is specie specific, or tests for all species...and she is telling me you have got to be kidding me I dont understand what you want to me to ask, you are speaking chinese,lol
Was viewing some videos about lyme disase the other day. The number of symptoms that I have are ridiculous.
Thanks for the site about the meds, macintosh.
Often times with the Cpni
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Cpni, Mycoplasma, Chronic EBVi, M.S.(MRI, Spinal Tap-greater than 5 oligoclonal bands and VEP), PANDAS(OCD). Wheldon CAPi (started 12/08),
Azithromycin/Clarithromycin(12/09), Lithium, Lamictal, NACi(2.4g/day), D3(12,000IU/day)Breaking-down, It is within
Breaking-down, It is within your rights as a UScitizen to request and recieve full hard copy of any tests and labs drawn on you for your personal records. I find this easiest to do directly through the lab where I have my labs drawn. You have to ask for a release to have the results sent to you directly at your address and you should state for your reason ; Medical Record. Your wife would need to ask specifically for herself and you for yourself. You can wait a long time trying to get the info from a doctors office. The lab knows the legalities and if you fulfill them they won't quibble. If the testing was done through a hospital lab then you can go to the record room of that hospital with your photo ID in hand and sign the release and they can print it out for you on the spot. I have had that done and it was interesting the variation that the Urologist reported to me verbally and what was actually on the paper report.
So FYI get your records and keep your copies you never know when an office will close or when you may want a second opinion without telling the previous opinion maker that you are doing so.
I just saw you on line and I hope you see this as it is an older post. Louise
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6-07WheldonCAP CFS20+yr
(11-29-07 started Cholestyramine HS PRNi x 7d for porphyrin+endotoxinsi removal)
Check out Louise's Blog at; http://www.cpnhelp.org/blog/louise for the details of my treatment adventure!
Breaking, tests for CPNi
Breaking, tests for CPNi and lyme are not much reliable and there are lots of false negative results for both diseasesi. Your symptoms may be related to any of them. The best thing you can do is to start antibioticsi at first. After a while(3 months is suitible) you can get your tests. Antibiotics will decrease the possiblity of false negative test.
yılmaz.
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KEREM'S TAKECARER;
Suspıcıon of MSi (transient nystagmus during conjugated gaze on february 2008, blepharospazms and some optic complaints on february 2009-no plaque on MRI), Vit D3 started 400 IU and elevated to 2000 ıu ın 40 days.
Hi MacKdo you have the web
Hi MacK
do you have the web link as I couldn't find this as noted above.
peace
thanks
r
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CFIDSi/ME, FMSi, MCS, IBSi, EBVi, CMV, Cpni, H1, chronic insomnia, Chronic Lyme, HME, Babesia, Natural HRT-menopause, NAC 2.4 gm,Full CAP 6-2-07, all supplementsi+Iodorol, Inositol-depression, ultra Chitosan, L lysine Pulse#27 04-19-10 1gm Flagyli/day-5 days<