CPN newbie needs advice

Hi,

In a recent testing I was found postive for CPNi. It makes sense, I have been largely asymptiomatic for years, had a litte cough and chest pain, but was dismissed by doctors as stress and nothing turned up on x-rays.

Never knew this could be CPN! I am dumbstruck and I have so little knowledge of this disease. The testing also said my immunei system was low (low CD57). 

Does this correlate to the CPN lowering my immunse system?

Obviously I've been looking this up while my doc considers what to do, but it's likely I've had this for years.

Everything on the web is so confusing - there's so many abbrevations and cures and what not :( Does anyone have a link to an easy to read guide?

The last 6 months I've also suffered from vertigo, some fatigue and light sensitivity - could these be CPN-related? Every other test I've done has come back normal. And I have extensively tested for pretty much every known disease in the book.

Thanks for any input.

Go to the top of the page, click on the CPNi HANDBOOK tab and read there.  You can also print it out and attack it in small increments. Wink

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

Hey ...

If you've got CPni, then this is the place to be.

I don't know if your chosen screen name says everything about you and you have just forgotten to come back or whether you found all the list of stuff to read too daunting.

Just in case you have dyslexia (like I do) and your moto is: "When all else fails, read the instructions ... and you've looked at the weighty handbook at thought: "Hay-ho, I'm gonna have to live with CPn!"  You may ask, can this be made any simpler?

Yes well I supose a good place to anyone to start would be to start taking the supplementsi including the most important of all: NACi and the fish oils.

You would need to obtain some 100mg capsules of doxycycline, to be taken with food and lots of liquid.  Start by taking one of those a day and then ask again.

Ok?

G.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

Thanks, both.

I've started reading the handbook. It's a lot to take in. I wasn't aware you needed such extensive antibiotic cures for this disease. I am very wary of going on one for months, or even years. I am in my 30's and pretty good health overall, shouldn't my immunei system just be able to hande this? Besides, I live in Norway, long term antibioticsi is pretty much impossible to get your hands on, leagaly. where's the science behind this?

I'm allready taking fish oils, will look into the NACi. Could anyone recommend a good product that ships internationally?

And supa - yeah my screen name says it all, but this seems to be the only place on the net with clues, even if its really complicated stuff!

CAPi since Nov 2014, doxyi+roxi & tinidazole pulsing, NACi + supps

For many decades, I was never sick".  We gutted, inside and out - a one hundred-year-old house, built four barns, had thirty acres of farm land, I played violin in the (professional) symphony orchestra, was concertmistress of a pro-am orchestra, laid eighteen hundred square feet of hardwood floor (that I had taken up from a warehouse being razed on the river), and had goats (which we showed), cattle, pigs, dogs, chickens, geese, and ducks.  We were very busy.

At the same time, every "cold" I got became a chest infection.  Then I thought I had sprained my shoulder, took a year's sabbatical, and when it didn't get better we ended up moving to warmer weather.  That was in 1990.  By 1995, I was getting in deeper trouble, and ended up, septic, in the hospital, after which I never recovered.  By 2004, I was on a cane and having major physical prolems.  Then began my abxi adventure - it has continued for ten years.  I have said before that I do not make a good invalid; I have too much to do.  

No longer do I play the violin but yesterday we had a doe who had triplets, one who had twins, and one who had one.  And we were up all night two nights ago with another set of twins.  My husband (age 71, pediatrician) still works, so I am here by myself much of the time.  Today will be a quadruple birth - scary!

Now, back to you Norwegians - I had a delightful brother-in-law who was "one of you".    He got the Lipizzaners out of Czechoslovakia after WWII.  You can do this.  As for the science, it is here on the site - read it.  Don't wait till you are where I was.

Rica

 

3/9 Symptoms returning. Began 5 abxi protocol 5/9 Rifampin 600, Amox 1000, Doxyi 200, MWF Azith 250, flagyli 1000 daily. Began Sept 04 PPMSi EDSSi 6.7 Now good days EDSS 1 Mind, like parachute, work only when open. Charlie Chan  In for the duration.&am

Absinthe - It isn't complicated.  You take 200mg of doxycycline daily, and 250mg azithromycin every monday, wednesday and friday.  For five days out of every month, you add in metronidazolei or tinidazole. 

Where's the science?  Read the physician pages (tab at top of page, right side).

Also, here is a link to Dr. Wheldon's page.  Instead of MSi, just insert your disease.  Treatment is the same, whether you have MS, arthritis, fatigue, rosaceai, etc. http://www.davidwheldon.co.uk/ms-treatment.html< 

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

Love your name! Welcome.

Nancy

PPMSi-misdiagnosed 2001-diagnosed 2006. Probably caught cpni in birth canal but it didn't pass BBBi until my 40s. Minocycline 7 mos.- resulting bronchitis 5 months.Go to private m.d. out-of-plan. Wheldon CAPi 3/2/07 Stopped 12/12; resumed 12/13

"It isn't complicated"... well, yes it is. It sounds like you are from the States - as I live in Norway, we live in the medical dark ages here for some things - and getting hold of long term abxi is nigh impossible. In Europe in general, too, I assume. Any European members here who have experiences?

CAPi since Nov 2014, doxyi+roxi & tinidazole pulsing, NACi + supps

Hi!

I live in the UK and am undergoing treatment using CAPi.

You are confusing two things:

Getting a doctor to prescribe CAP - difficult in most countries.

Obtaining / importing antibioticsi and treating yourself;  this is what many of us are actually doing.

(Please excuse my brevity but i am doing this from my phone whilst at work)

G.

“Don't believe everything you read on the internet.”

―    Abraham Lincoln<

I have answered Absinteminded in a PM, but I will put an answer here as well, for anybody just browsing here for answers. As Superguy says, To get a  doctor, in any country, to give you much help is virtually impossible, and in Norway i is a major task just to get the antibioticsi into the country. Norway is not in the dark ages any more than other countries. No doctor here in the UK could legally get us the medicines, but it is a bit easier to get them into this country than into Norway, but let's not talk about that here. 

Cant wait to get rid of my MSi. I will miss that lovely buzzing inside my head all the time, but sacrifices has to be made?

I'm sure you can clearly see I was referring to the PROTOCOL not being complicated, The last sentence of your post referred to how complicated it is to get information on this and how this is the only place on the web to get the info.  My post was in response to your remarks about the quantity of the meds and all the confusing information here on the cpnhelp site.  

For the record, it's every bit as difficult to obtain the meds here in the U.S. as where you are, unless you have a prescribing doctor.

But, EVERYONE, please limit your conversations about that to PRIVATE MESSAGING and not this public board.

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

Right I see Mac, no offence meant - just probably venting a bit of frustration off from the scale of this--- thanks, everyone, I got it.

CAPi since Nov 2014, doxyi+roxi & tinidazole pulsing, NACi + supps

Absinthe, if you want to know the best places online to buy abxi from, ask me nd I will forward you the current best addresses!  Also you might care to PM Nord, who is Swedish......................Sarah

A Journey through Light and Shadow

Completed Stratton/Wheldon regime for aggressive secondary progressive MSi in June 2007, after four years, three of which intermittent.   Still improving bit by bit and no relapses since finishing treatment.

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