21 Jun 2007 08:00 am
27 Apr 2018
Title
just diagnosed with CPn. could ALL my symptoms be related to CPn?
Body
hi,i'm a 32 yr old previously healthy man with an athletic background.last summer i started having nausea/fatigue attacks after long walks, i think it was 3 times.now, from 30 dec i've been sick with symptoms such as nausea, mild malaise, head ache, fatigue, shaking hands, mild muscle cramps, muscle weakness, shaking after exercise and attacks of difficulty breathing. i've also had a constant beep tone in my nose when breathing as well as a an occasional dry cough.the worst things is the malaise, nausea and muscle weakness.
Comments
21 Jun 2007 08:40 am
Hi Nik, I will send you the
Hi Nik, I will send you the welcome message with a few tips on how to get the best out of this site. In the meantime Jim has said it all really...
You will need to learn a few things about Cpn to make sure you get the best treatment, to that end I recomment that you look at the handbook, in particular at this part of the handbook that describes the two CAPs we use of this site to get rid of Cpn. In the beginning they are very similar.
Michele (UK) GFA: Wheldon CAP1st May 2006 . Daily Doxy, Azi MWF, Flagyl at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006
Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.
21 Jun 2007 09:29 am
Nikl - Wherever did you get
Nikl - Wherever did you get the idea you lack important symptoms of cpnn infection, such as resting 24 hours after exercise? None of us here have identical symptoms, which is probably why doctors can't recognize we all have a bacteria in common!
As Jim says, and as your tests show, you likely have cpn infection. Now, all you have to do is take your doctor a printout of some of the pages from this site (which Michele's welcome note will probably explain to you) and get him to prescribe appropriate antibiotics for you. Sounds like you're halfway there, already. Everyone here will walk you through it.
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 so much for the
thanks so much for the help!
i will try to take a look around and see what's what.
mackintosh > no i meant that my doctors say i cant really have CFS (not cpn), because i'm not tired enough. i sleep 8 hrs a night and i never have to lay down during the day (except for like 15 minutes now and then).
my entire body feels like jelly though...
so what are you saying: CPn never goes away this fast (4 weeks) or it usually doesn't?
best /nikl
21 Jun 2007 10:07 am
Welcome Nikl- You are in
Welcome Nikl- You are in the right place. The best part is you already have a diagnosis of CPN. Some of us took a long time before finding that out. Now that you know what is wrong with you, you can treat it and THIS is the best treatment plan. Dr. Stratton did extensive studies on this bacteria and over the years the protocol has been refined. People here are getting well. Many doctors don't know about this treatment. It seems to be the best kept secret in medicine right now. But you have found it out. Read,read and read. This site is full of info. Dr. Stratton will talk to other docs and explain the protocol to them. All they have to do is have an open mind. Happy searching. Good days are ahead of you (eventually). This is not a quick cure.
Lynda....CFS/ME,Fibromyalgia,IBS,Hypothyroid,Lyme,CPN,Diabetus Insipidus(DI).Started Stratton Protocol 8-06; Daily amounts: NAC 750mg 3X, Doxy 100mg 2x, one 2 week pulse of Flagyl 500mg 2x, Azith 250 mg MWF 1x,Armour,Thyroid ,Klonopin,DDAVP,supplements.
Lynda- ME/CFS, Fibro, IBS, Hypothyroid, Lyme, Cpn, Diabetus Insipidus(DI). Stratton Protocol 8-06; Daily: NAC 2250mg, Doxy 200mg, Flagyl pulses 1500mg- 5days-every 3 weeks,
>>>Welcome Nikl- You are in
>>>Welcome Nikl- You are in the right place. The best part is you already have a diagnosis of CPN. Some of us took a long time before finding that out. Now that you know what is wrong with you, you can treat it and THIS is the best treatment plan. Dr. Stratton did extensive studies on this bacteria and over the years the protocol has been refined. People here are getting well.
Lynda,
Thanks. Yes, I guess I'm lucky (sort of).
I had a smart ENT doctor that eventually thought of testing me.
Where I live, the doctors have never heard of this protocol. To be honest, most of them don't even believe in the existence of CFS, except for being a word that comes in handy when u don't have a clue why a person is sick.
/nikl
21 Jun 2007 12:15 pm
Hello, nikl Sounds to me
Hello, nikl
Sounds to me like you have CFS (caused by CPn) like I do.
Did you sleep 8 hrs. per night before you got sick? I only slept 6 1/2 or 7 until I got sick. I don't have sore lymph nodes (except during a pulse) either.
Also: you may find that you will have more episodes of breathlessness for 24 - 48 hours after exertion. If you never avoid exertion for that long, then you won't be able to tell. I never "have" to rest after exertion, but my episodes of 'air hunger' will be more frequent for about 2 days afterward if I don't, or even sometimes if I do.
The disconnected timing of the exertion and the symptoms can make it very difficult to see the connection. I mean, I walk fast through the mall, then I breathe hard for a while, then I'm "fine" -- perfectly normal, almost. Then at dinnertime that night, or the next, an episode of breathlessness starts for "no reason." (At least not one that seems very connected, unless you watch it over a period of weeks)
How about "mental exertion?" Do you need more sleep (or a 15 min lie-down) if you try to concentrate hard for several hours?
Do you feel colder (instead of warming up properly) during exertion? What about your temp? CFSers typically run a few degrees below normal -- especially for a day or two after exertion.
Were there a few "punctuate lesions" in your MRI (temporal lobe, I think it is) -- they'll be described as "normal," by the way, although they occur quite often in CFS. How about your Sed Rate? CFS often shows a sed rate less than 5.
How about the gall bladder? About 30% of the time, people with new CFS will start having gall bladder problems.
Ron
On CAP for CFS starting 01/06 (NE Ohio, USA)
Currently: doxy & zith -- continous; metronidazole -- 5 days on, 7 days off.
Get the research results you paid for: support Open Access
RonOn CAP for CFS starting 01/06 (NE Ohio, USA)Began rifampin trial 1/14/09Currently: on intermittent
paron! >>>Did you sleep 8
paron!
>>>Did you sleep 8 hrs. per night before you got sick? I only slept 6 1/2 or 7 until I got sick. I don't have sore lymph nodes (except during a pulse) either.
no, i think i usually slept 9 back then. i'm pretty lazy. i've had sleeping problems before for some time (hard to go to sleep, never wakes up mid-sleep thankfully), but now that i'm sick, for some reason i don't. except when my system gets f-ed up and i wake up 2-3 a night feeling totally "awake" (hypothalamus problems wise people have suggested)
>>>Also: you may find that you will have more episodes of breathlessness for 24 - 48 hours after exertion. If you never avoid exertion for that long, then you won't be able to tell. I never "have" to rest after exertion, but my episodes of 'air hunger' will be more frequent for about 2 days afterward if I don't, or even sometimes if I do.
that may be the case for me to. i haven't really tested. only thing i know for sure is that i start shaking and feel a weird anxiety after and sometimes during exertion.
>>>How about "mental exertion?" Do you need more sleep (or a 15 min lie-down) if you try to concentrate hard for several hours?
yes kind of. i don't suffer from memory loss or other cognitive impairments but yes it makes feel a bit psychically ill sometimes.
>>>Do you feel colder (instead of warming up properly) during exertion? What about your temp? CFSers typically run a few degrees below normal -- especially for a day or two after exertion.
no i get warmer. my temperature is the normal 37 degrees C.
>>>Were there a few "punctuate lesions" in your MRI (temporal lobe, I think it is) -- they'll be described as "normal," by the way, although they occur quite often in CFS. How about your Sed Rate? CFS often shows a sed rate less than 5.
i wish i knew. after the CT scan they said the may have found anomalies, but after MRI follow up i was just declared normal. they showed me no print or whatever i may be called.
>>>How about the gall bladder? About 30% of the time, people with new CFS will start having gall bladder problems.
sorry for being ignorant here but i have no idea what the gall bladder does :D
what sort of problems might that be?
thanks for the question! really. i have no idea what to look out for really.
i was tested positive 5 days ago and up until then it has all just been a mystery to me what's going on.
if you (the lot) don't mind i'd like to ask a few more specific things about all this:
# for a year now i've had a peculiar sweet taste in my mouth (that is PRIOR to getting officially sick). it increases after exertion and eating, and there have been times that i've thought i'm going insane as no dentist nor ENT doctor has had any explanation.
does anyone else have this?
(it's not horrifyingly bad-tasting just weird.
its like a mixture of sweet taste and the taste u have when u have a flu.)
# is there any reason to get tested for actual CNp infection or should I settle with having a high number of antibodies?
# i'm also interested in the "traditional" symptoms of CNp, that is cough, fatigue and breathing problems due to the actual pneumonia. do you guys have them? or do you "just" have all these more severe post viral symptoms?
# lastly, is it common that motoric functions are impaired? sometimes i can hardly type IM on my cellphone without feeling like my fingers are made of concrete.
BTW, i'm not american, so my apologies for using any unintelligible or miss-spelled words :D
now i'll start reading all the info here and stop asking about minute details...
best,
/nikl
21 Jun 2007 01:46 pm
My only advice is don't
My only advice is don't wait like I did. I only did 4 months of antibiotics when I finally figured out what was going on and it helped alot but did not do the job. If I were you I would find the best CFS Dr. you can who is willing to prescribe CAP and address other issues ASAP.
Best to you,
Chris
CAP since 11/06 for CFS. Cpn, Myco P, CMV, HHV-6 infections.
Minocin 200mg daily. All supplements.
CAP since 11/06 for Cpn, Lyme, Bartonella, Babesia, Myco P, CMV, HHV-6 infections.
Rifampin 600mg daily, Zithromax 500mg daily. NAC 2250mg daily. All other supplements. Now Bicillin LA 2.4 mil injection weekly.
21 Jun 2007 04:53 pm
nikl, if you were having
nikl, if you were having gall bladder attacks, you would know it, so I assume you're not. They're quite painful.
When I am fatigued, I will have coughing spells so deep I get dizzy. Otherwise, no.
I get finger-tied too. I knock things over and drop things and mix up which hand is the "f" and which is the "j" on the keyboard -- things like that.
Most of this is much better now than it was when I started the protocol. Still, if I am fatigued, I will have a couple of rough days, especially when the porphyria is bad.
When you wake up like that, try some glucose -- oftentimes it will stop the porphyria that causes the problem, and then you can sleep. Read up on this site about secondary porphyria, because it can cause some of the symptoms, and it is somewhat controllable.
Ron
On CAP for CFS starting 01/06 (NE Ohio, USA)
Currently: doxy & zith -- continous; metronidazole -- 5 days on, 7 days off.
Get the research results you paid for: support Open Access
RonOn CAP for CFS starting 01/06 (NE Ohio, USA)Began rifampin trial 1/14/09Currently: on intermittent
21 Jun 2007 06:35 pm
Four weeks of Azithromycini
Four weeks of Azithromycin will not do the trick unfortunately. Also if you are starting with Azithromycin, take it easy... I'm not sure what your prescription will be but we take 250mg Azithromycin on Mon, Wed, Fri only and some people even find that hard to tolerate in the beginning... so they may start with just one 250mg dose a week.
Michele (UK) GFA: Wheldon CAP1st May 2006 . Daily Doxy, Azi MWF, Flagyl at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006
Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.
Gallbladder is located just
Gallbladder is located just below the right ribcage and the twinges/pain are pretty obvious. Less obvious with gallbladder attacks are the pain in the mid-back, which radiates upward and the 'binding' pain like a rubberband around the chest and back which truly feels like a heart attack. I was curled up in the fetal position expecting to die each time I had an attack. The attacks usually come after eating very fatty food, fried food, or pork products.
Because of this, I was scheduled to have my gallbladder removed shortly after I began antibiotics. It had ceased to function altogether. The surgeon felt starting abx for my MS was a good idea, as I'd already be somewhat protected from infection when he did the surgery. Well, less than two weeks into azithromycin and doxycycline, the gallbladder re-inflated itself and began to function normally. I actually felt the little 'pop' when it happened. The doctor was amazed and told me to forget about surgery.
He then recommended antibiotic therapy to his former partner, who had to quit practicing medicine due to her advancing MS.
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
>>>> Four weeks of
>>>>
Four weeks of Azithromycini will not do the trick unfortunately. Also if you are starting with Azithromycin, take it easy... I'm not sure what your prescription will be but we take 250mg Azithromycin on Mon, Wed, Fri only and some people even find that hard to tolerate in the beginning... so they may start with just one 250mg dose a week.
Michele (UK) GFA: Wheldon CAP1st May 2006 . Daily Doxyi, Azi MWF, Flagyli at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006
>>>>>>>
michele,
i've been following the instructions from my ENT doctor.
it's azitromax (u guys call it azitromycin, no?) and i've been taking 500 mg first day, then 250 mg for 4 days, then 250 mg every other day.
i'm on my 4th day now.
am I taking too much? should I not follow the doctor's instructions?
i don't feel that good right now. some of the nausea/malaise symptoms are worse than they've been in months.
kindly /nikl
25 Jun 2007 03:51 am
Well of course, who am I to
Well of course, who am I to question your ENT specialist, I'm not medically trained, just another Cpn victim. Its just that Dr Stratton's research, all the experience that we have accumulated on this site and through people's feedback, it seems apparent to us that Cpn will not go away with 4 weeks of Azithromycin, (zithromax=azithromycin). A lot of people, but not all, find the action of Azithromycin on the body, especially in the beginning to cause quite a few reactions which are unpleasant and can in some people make them very sick. You might be lucky and get only mild reactions. If your doc follows up this course of azithromycin with a continuous protocol consisting of 200mg doxycyline (or similar) as well as 250mg Azi on MWF, then you will be getting closer to the kind of protocol we follow. After these two drugs are well tolerated we add a three weekly -5 day pulse - of 1200mg Metronidazole. This protocol goes on for months and in some cases years...
Michele (UK) GFA: Wheldon CAP1st May 2006 . Daily Doxy, Azi MWF, Flagyl at 400mg for 7 days prior to 5 day pulses at 1200mg three weeks cycle. Spokesperson for Ella, RRMS Wheldon CAP 16th March 2006
Michèle (UK) GFA: Wheldon CAP 1st May 2006. Daily Doxy, Azi MWF, metro pulse.
Michele, How funny! I
Michele, How funny! I believe I heard your tone of voice in that post! 
Most of us are here specifically BECAUSE we questioned the rationale of our doctors, and, as you know, most of us have fired at least one doctor in our search for the right protocol.
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
al right! now i'm starting
al right!
now i'm starting to get pretty sure my problems are CNp related.
that is: i feel sick as hell. :D
and that after 5 days of abx.
normally i wouldn't really celebrate that but now... yeah sort of.
my condition is getting back to where i was when it all started 6 months ago,
mean nausea attacks, discoordination, feels like i've eaten something from the trash can, tremors, jaw pain, flue like feeling.
I've been "attack free" since march, now it's back.
i'm gonna buy some NAC tomorrow.
(and start a blog instead of writing down every detail here... :D)
later,
/nikl
21 Jun 2007
Nikki- Yes, it's possible
Nikki- Yes, it's possible that your symptoms are due to Cpn. Cpn makes it's host cells absorb more glucose from your blood so they can make more ATP (energy molecule), then steal the ATP so they can reproduce. This means that you can be borderline low glucose and exercise uses up both glucose (leading to low blood sugar and shakeyness, etc.) and burns up ATP faster, leaving you with increased secondary porphyria (see the Handbook). The porphyria is responsible often for the nausea, malaise and muscle cramps.
Four weeks of azith will only temporarily help, as azith only addresses one phase of the Cpn leaving live Cpn in other phases to reproduce once the antibiotic is stopped. The combination antibiotic protocol (CAP) is the only way to completely erradicate Cpn in all it's phases, but it's a long term project not a four week quick fix.
CFS is not necessarily a seperate syndrome. All of it's symptoms could be caused by Cpn persistent infection. There may be endocrine and other imbalances which need to also be treated. For this, and probably for the Cpn, you need to see a doc who uses a broad spectrum approach to CFS (a lá Teitelbaum, Holtorf, Powell or similar approach).
CAP for Chlamydia pneumonia since 11/04. 25yrs CFS & FMS- Currently: 150mg INH, 200 Doxycycline, 500mg MWF Azithromycin, 1000mg Tini daily (Continuous protocol)