Interstitial cystitis

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Chronic irritation of bladder

Jim’s Story- Chlamydia Pneumoniae and Chronic Fatigue/Fibromyalgia

The Tunnel of Illness

I want to update my story on the front end so readers know even before reading the "agony post" how much benefit I've gotten from the treatment. It is August 26th, 2006. Coming up on two years I've been on the Combined Antibiotic Protocol (CAPi) for Chlamydia pneumoniae (Cpni). A recent forum poster asked if anyone with CFSi has improved on the CAP. My response:

Damned right I'm getting better!When I started the CAP I was in a 2 year slide after 25 years of CFS, then added FMSi. For many years I'd struggled and somehow maintained a semblance of a life. Then over 2 years my pain, brain fog, restricted functioning, etc. slid to a point where I had to stop traveling and could for the first time see the possibility that I would become bedridden eventually.

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plaquenil?

I have Interstitial Cystitis and have been doing antibiotic therapy and the NP that I am have treating me wants me to take plaquenil to see if I have a die off reaction, I am currently taking ammoxicillin and augmentin and flucanzole for yeast.  Plaquenil has drug interactions with cymbalta which I am also talking. i am nervous to take it....Two years ago I took minocycline and rifampin and had horrible die off reaction and then for months I barely had any bladder pain or issues. then it came back again.  She is basing this on the Fry bug theory, she thinks I might have that. Idont know any input would be great. thanks, Michelle

1 year and 9 months on CAP.

I didn't even notice how time went by. It's been 1 year and 9 months since I started CAPi. When I started, I thought I'd be on it only for a year. Then I hoped to stop at 2 years mark but now I see that I may need a bit more time b/c I still have a few unresolved symptoms.

I am guilty though for taking about 3-4 weeks break from treatment this summer. It happened sponteneously. I ran out of meds, didn't refill on time, we needed to go away for vacation, oh well, many excuses. The truth is that I am burnt out.  I put myself back on track but I can't wait when the treatment will be over. 

Do I add more drugs?

I saw both my endocrinologist and my CAPi prescriber this week. I have a painful heartbeat that's been bothering me mainly with some movements and deep breaths. So my endo wants me to take Advil in addition to my CAP. My CAP prescriber didn't have any suggestions in that regard but wants me to add Diflucan into the protocol for possible candida issues just b/c I've been so long on abxi.

Right now I am taking Amoxicillin 1000 mg x 2/day, Clarith 500 mg x 2/day, Minoi 100 mg x 2/day, Flagyli 500 mg x 2/day. If I add Advil and Diflucan, would it be too many drugs for my poor liver? On the other hand, I'd like to try something for that painful heartbeat.

Any thoughts? Thanks for any input.

My new dr

My previous LLMD who was my CAPi prescriber moved out of state and I transitioned to another dr in the same practice group. Yesterday was my first appt. I was a bit apprehensive to change the dr but I am happy now I must say.

My new dr has a different approach to the disease in terms of that he treats whole body. If my previous provider just gave me CAP rx, this dr wants to address all my conditions - hypoT, hypertension">i, nutritional issues, wants to check heavy metals as well. He even asked if I have a ObGyn and do regular pap smears.

Can bacterial cryptic form develop resistance to Flagyl?

Yesterday I took my first Flagyli 250 mg, no reaction. Today took 2 x 250 mg and started to wonder, is it possible to develop resistance to Flagyl if taken in small doses? I'll be increasing the dose in future pulses if tolerated. My dr wants me to take 500 mg x 2/day for 14 days a month eventually.

First CAP anniversar, progress report and thoughts...

It's hard to believe but I am on 13th month of CAPi treatment. I started on January 02, 2008, twicked my protocol a little for a couple of months. Since March'08 I settled on Doxyi 200 mg/day and Rifampin 600 mg/day. In Nov'08 Bactrim was added twice a day. 2 weeks ago I switched from Doxy to Minocycline. So, right now I am on Mino + Rif + Bactrim.

Antibiotics to be available without prescription

This is the news:  In England, possible antibioticsi to be sold over the counter, to treat CHLAMYDIA!

This is the story form http://www.guardian.co.uk/society/2008/aug/06/health<

Oral antibiotics are to be made available for the first time without doctor's prescription under guidelines approved yesterday by the medicines regulator.

A pill to treat chlamydia, the most commonly diagnosed sexually transmitted infection, will become available for purchase in pharmacies across England later this year.

5th month on CAP - long overdue update.

I was going to post updates with my progress monthly but having being overwhelmed with trying to keep up with life and treatment, I am way  behind.

Anyway, here I go. I started back in Jan'08 with big doses of CAPi (3 abxi) and after extremely severe die-off reactions and stopping a couple of times, I re-started nice and slow in Feb'08, adding 1 abxi at the time, making small changes and ramping up.  

Finally on full doses of current protocol - Rifampin 600 mg/day and Doxyi 100 mg x 2/day - since mid-March. 

introduction and inquiry about topicals

Hello, and thank you for taking the time to read this post.

I was not able to locate information referencing contraindications to my Rx topicals.

Please pardon me if this is covered elsewhere.

I'll start with a bit about where I'm at and have been.

Mental

I'm a graphic designer who works from home. I have a happy homelife and a positive worklife. I believe that i am a healthy person, I just do not physically feel like one. I have long suspected that everything I experience is tied together, so am really happy to see this Web site. I want to live my life again: I want to go outside into the sunshine; ride a bike; shop in a store!



Physical

Concerned with the future fate of my CAP

I went to see my Lyme dr for a monthly appt. and came back home all disturbed and worried. This was my 4th appt with this dr and I am still in the beginning phase of the CAPi tx. By this time my dr and I should be developing a working relationship but it's not happening. During appt he asked - Remind me, how long have you been sick? So I told him my story again very briefly. As I mentioned that I saw rheum dr before finding him, he asked - And Rheum didn't find anyhting? That surprised me completely b/c on my 1st appt with this dr I brought to him consult notes from the rheum dr stating the dxi and plan of tx (not CAP, of course but prednisolone & Sulfasalazine). I felt he didn't remember my case at all.

Positive for BB?

When I saw my dr a few days ago we went over my labs results that had come back. The Western Blot for Lyme disease. IgGi was negative. Good news, right? But strangely enough, IgM was positive by both standards - unconventional Igenex (where the labs were actually done) and CDC.

I was floored, I really didn't believe that I may have Lyme.  The dr told there may be a false positive and we ordered a confirmation test with Igenex.

The reason I think it is strange to have IgM (+) b/c my sxi started so long ago and logically it's IgG that should be (+) if I have Lyme.

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