Hi, I'm new to CPNHELP. ORG....suffering from RRMSi and just trying to find out more information.  I'm currently on LDNi at 4.5mg and looking to find out if I can under go CAPi and continue on LDN. I am certain that I have some candida infection but also think that CPN is likely, as I've been since with infectionsi most of my life.

Any help would be welcomed and I am encouraged by this site... I am scared at the prospect of worsening symptoms that aren't that disabling at the moment...but I don't want to continue on Copaxone and after a recently IV with SoluMedrol, which left me a mess, I don't want the traditional Interferon route any longer.

I am allergic to penicillin but I don't believe that would be problematic with this protocol.

Where Do I Go From Here??? 

In December, you all helped me deal with porphyriai and die off.  I am feeling better, thanks to you all.  I continue to be diligent with my charcoal, Emergen C, etc.

Now I need help deciding which direction to go first.  I want to change my CAPi to better match the Vandy and Weldon Protocols.  I'm currently on NACi, Doxyi, and Cipro.  I'm thinking that I'd like to change the Cipro to Azithromycin.  I'm also at the point where I can begin pulses with Flagyli.

Every time that I begin a med, increase or change a dose, etc. I get very sick.  With that in mind, I want to be very careful and go slowly with any changes. 

Ok - just got back from my Dr and I'm in a hell of a mood!

I went to pick up the remainder of the 8 week prescription he said he would give me (prior to Chrismas,  this was the most he was prepared to do).

Now however, he has decided that he will not even give me the remainder prescription. His reason? Well, simple. On the home page of this site, it says ''patients who are themselves undergoing combination antibiotic treatment of diseasesi where Cpni has been implicated'' etc. So, as I am not testing 'positive' and therefore Cpn is not implicated (I had it but not now he argues) why take the antibioticsi?

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:)

I feel like I am hogging the blogs here- sorry:) It is just so nice to have an outlet. I just need to see if my brain is straight here. Does anyone else have the "sense of impending doom" symptom besides me? I went for a while without it thankfully... but I still wake up with sweats sometimes thinking there must be some cancer in my body and not just cpni (as if cpn wasnt enough to battle right?) So- I am trying to be patient and wise with my body and not jump to a new type of specialist every day like I was for awhile -my dr got tired of my calls I know:)

Just thought I would  get that off my chest so to speak. Thanks. God is so good- even when I am in brain fog (maybe I should say especially when:))

Melissa

Having for years been diagnosed (wrongly I believe) with prostatitis, I have been trying to pass on the possibility of Cpni involvement with this awfull 'Men's disease' via a dedicated help web site of which I am still a member.

I had expected a reasonable hearing, but was surprised at the poor reaction I got back. I failed primarily because when I pointed out this Cpn web site and the possible connection with prostatitis, there was, it seemed, precious little evidence or information to support the theory.

I want to try again, as I know how badly some men are suffering from this, has anyone got any further info or data on this prostatei/Cpn connection that I can put their way?  

is pryuvate a supplement?

This may seem like a really silly question- but how does a doctor diagnose you with fibromyalgiai? Or chronic fatigue for that matter. I am just wondering. THansk so much.

Melissa

Since I've been taking just 1 flagyli per pulse since some time last summer and have occasionally skipped a week, I truly have lost count. But as of the last 2 pulses I am up to 2 pills. Today was day 3 and I was able to go out and do some shopping, but I came home utterly exhausted. Of course, that's not exactly new for me. During the teaching semester, just stopping for gas on the way home from teaching a 3 hour class requires true grit.

Well, I thought I might get away light but 6 days after the end of my first Tinii pulse, I got slammed with headaches, pain and swelling. Joints ache. The side of my head has always been a problem area with areas that have been stiff or achy. Now the entire right side of my head is hot and feels swollen. There are lumps under the scalp that come and go and the skin itches. My right eye aches and feels swollen. The white is red and looks irritated.The bone behind the brow is sore to the touch. Tini is definitely on a killing spree.

Is it fairly normal for you guys to have lymphs that won't go down? I am wondering if I shouldnt go see an oncologist to just get a handle on this thing- I have one behind my ear that is clogged that goes up adn down but never away and is rather large right now and the past couple of days I have had flashbacks of lymph soreness underarm and down side- top of thigh and hips and in pelvic area and on shoulder.... should I be concerned?
Thanks

I have been thinking about this past year (as I am sure everyone else is doing).  But I am focusing on the CAPi therapy for me during this year.  As I look back I can see how far I have come and thought it might be helpful to others to blog about what has changed.

 

A year ago I was very concerned that things were turning for the worse for me.  Vision issues (double vision, nystagmus) had not resolved from the last flare that I had,  balance seemed to be worse, "wobbly feeling", brain fog, focus, tremor, dizziness, feet pain, constant bladder infectionsi, fatigue, feeling blue, many days that I just didn't feel well, tingling in left arm, hand and foot

 

Hi all,

Today was a bad start for this year.

My mother was hurt in a carcrash this morning.

She had to stay in the car for 1 our before a lady with a dog found here.

It was cold outside and she could not get out because she was hurt.

They got help and she is now in hospital.

She has a pelvic fracture and 8 ribs are broken so she has a lot of pain and also fever.

I feel so sorry for my loved mother. Both my parents have their health problems and I think they are cpni related.And then they also had watch their children get very sick with cpn these last 2 and a half years.

 And now this first day of the year, I was so hoping for a better year for my parents and my brother and me.

But we are strong so we fight on for better health.

I am very late in reporting my 11th pulse, which occurred the week  of Dec. 14.  As usual everything started out uneventful.  After a couple of days I had the usual headache plus facial and sinus pain.  Slight dizzy feeling came back which may be from the sinus pressure etc.  Overall pretty uneventful time which I am happy about.  I don't dread Tindamax like I did Flagyli but still feel that it is working for me.

Lori 

Hi