Interstitial cystitis

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Chronic irritation of bladder

Hypoglycemia and how do you manage?

I am on Doxycycline 100 mg x2/day since 01/14/08. Before Doxy I started with Minocycline/Rifampin CAPi but had to stop in a few days due to severe reactions and overwhelming hypoglycemia as well. Now, on Doxy, hypoglycemia continues. I was feeling good for a couple of days earlier this week but on Wed evening relapsed with weakness, tiredness, shaking/shivering due to feeling cold, tachycardia, BP's up, nausea, hunger and so on. Most of the Thu I felt waves of the same effects and had to leave work. Today, Fri, I am feeling much better but I have to eat something every 2 hrs to keep re-occurrence of hypoglycemia away.

Ultrase

Hi Everyone,

I had my second appointment with Dr. Powell last week (well actually it was with his assistant but same office).

He put me on the supplement regime before starting abxi...

One of the things he prescribed to me is Ultrase, which from what I understand is a digestive enzyme, but when i went to the pharmacy to pick it up they informed me it would be $350 (and this is with insurance coverage). I can't afford that right now so I just picked up the Ursodiol which he also prescribed.

I did a search on Ultrase on this site and didn't find much about it. Just wondering if anyone has found it particularly helpful or if you think it is highly neccessary for the protocol...I guess I am just not totally clear on what it is supposed to help with.

Embarking on CAP - what do you think of this protocol?

Last Fri I saw my new dr who is an integrative MD specializing in Lyme. Very nice, compassionate and down to earth person. The appt was early morning when I am not yet in my best shape. I was so exhausted and brained fogged, my BP was soaring 170/110 so that my hubby had to drive me over and was a big support at the dr's office as well. 

Anyone knows Dr in Maryland or closest states? Dr Carter in Florida?

Hello, everyone,

I had posted once on the forum, including a very brief description of my story. Now it's time to start a blog as I understand, I am here for A LONG HAUL. I am not sure where to start as there is so much to all my illness.

I guess, my arthritis/tendonitis and myalgia would be the main complaint. Then hypertension">i, then sinusitis, hypothyroidism, heart palps, chronic cystitis, PID, hand cysts, mild cough, brain fog and fatigue. All of this started one by one since I was 8 yrs old but only recently after doing a bunch of research and this year being dxi with Reiter's syndrome I put 2 and 2 together and figured out that Cpni infection could cause all or any of my conditions.

New here, first blog...does this sound like CPN?

As this is my first blog im going to keep this short and just share my history and onset of symptoms..

April 05- thumping in left ear and pain, fullness (dr said allergies/benadryl...helped somewhat

 

May 05- very bad sore throat, after a week on amoxy went into upper respitory infection, but on cefzil, I seemed to get better then sick again.  Cough lasted about 3 weeks.

June 05-  very bad bought of constipation

August 05- sore throat begins again, chest feels tight, go back to the dr he says bronchitis is back again, puts ime on cefzil since it worked before.  This lasts about a week....i had more coughing especially at nite.

 

I was also on vacation in the pocono mountains.

 

Interstital Cystitis?

I haven't posted in a while, but I am still around, LOL and gleaning  the site.  

I had two wonderful weeks of feeling normal -- actually having some energy (not endurance, but definitely energy) and cognitive thinking (my brain fog had seemed to lift after I was on the full dosage of Doxyi)  I guess that was plateau #1!  It was so wonderful to feel normal, they weren't whispers, they were shouts!  It seems like FOREVER, but I  have only been on the full dose of doxy the  end of June/through the month of July.

herpes

Hi,

 

was wondering if anyone has had problems with oral herpes (cold sores) while dealing with chlamydia pneumonia infection. i have never had a cold sore in my life but as soon as all my problems started (mainly interstitial cystitis and muscoskelatal issues), i get a huge outbreak of cold sores every time i start my period....i can control them somewhat with valtrex but it is really odd and frustrating. do you think this is related to cpni hogging my immunei system or simply a hormonal thing?

Ketek questions for interstitial cystitis etc...

Hi,

I have questions about taking the antibiotic Ketek. My doctor has spoken with Dr. Stratton and he has suggested 6 months of this protocol of 5 days a month of Ketek followed by daily supplementsi etc...it is to treat my interstitial cystitis and list of other undiagnosable problems. I am pretty new at this and am having trouble deciding if this is the road to go down. I am scared of taking all of this medicine and not knowing if it is going to work or not. Can someone tell me if Ketek has worked for them and what the side effects are? Basically any suggestions will help...thanks very much...

Essential Observations by Dr. Charles Stratton on Chlamydia Pneumoniae Infection and Disease

I am very excited to present the following article that summarizes Dr. Stratton's recent observations on Chlamydia pneumoniae infection. Putting it together has contributed greatly to my own understanding of Cpni as well as to my appreciation of Dr. Stratton's generosity with his time, and his great depth of knowledge of this area. Thanks to him for his contribution.

Jim K

Recent observations by Dr

Recent observations by Dr. Charles Strattoni on Chlamydia Pneumoniae (Cpn) Infection

Prostatitis, Prostate Cancer and Chlamydia Pneumoniae

Stratton et al found evidence of Cpni in interstitial cystitisi (IC) in a study which is listed in our research pages. In a recent web excursion I found this researcher's page which describes a number of studies finding quite high rates of Cpn in prostatitis, BHP, and even prostatei cancer:

http://home.swipnet.se/isop/mazzoli.htm<

The research looks solid to me. Worth taking a look. 

Plateau, Cleanup, Megapulse & the Kitchen Test

I haven't blogged in a bit, wanting to get through this whole cycle before reporting in. By early June I had reached what seemed to be a plateau-- I wasn't improving at any noticeable rate, I was feeling more brain fog and fatigue, and urinary and prostatei symptoms were worsening. I had added a lot of new supplementsi as per Dr. Powell, and didn't know if I was reacting to the supplementsi, having increase die-off from them, or what. Consulting with Dr. Powell, he suggested that take a week or two off antibioticsi, stay with supplements but with less niacinamide and remove the new ones, give my body some recovery time, and test for some possible viral co-factors (HHV-6, CMV), and increase my anti-yeast supplements.

I found a new antifungal supplement called Kolorex (Horopito extract) which sounded good to me, and added this once a day, stopped zithi/doxyi and followed directions. In a week it was clear to me that the increased brain fog was due to yeast, as I had die-off reaction for the first day or two, then less generalized inflammationi and less brain fog. Okay, puzzle piece one. Since I was getting irritated eyes from the higher dosee of niacinamide (I had worked up to 3000mg per day and was now down to 2000) I decided to cut it back to 1500mg per day, thinking it might be irritating my urinary system. No difference in that yet.

Diseases associated with Cpn: the exhaustive list

I have culled from Mitchell & Stratton patent #6,884,784 an exhaustive list of diseasesi where Cpni has been implicated as a possible cause or co-factor (reference: Mitchell & Stratton patent #6,884,784):

Diseases where an association has been discovered between chronic Chlamydia infection of body fluids and/or tissues with several disease syndromes of previously unknown etiology in humans which respond to unique antichlamydial regimens include:

Editorial comment: Strong findings from their research. If you have any of these it suggests to me that at least an empirical course of the combination antibiotic therapy is strongly indicated, with or without serologyi.


Multiple Sclerosis (MSi)
Rheumatoid Arthritis (RA)
Inflammatory Bowel Diseasei (IBD)
Interstitial Cystitisi (IC)
Fibromyalgiai (FM)
Autonomic nervous dysfunction (AND neural-mediated hypotension);
Pyoderma Gangrenosum (PG)
Chronic Fatigue (CF) and Chronic Fatigue Syndromei (CFSi).

Stratton/Mitchell & Siram Case Reports

Does it work?

It has been noted that most users of the combination antibiotic protocolsi commenting here have not been on the treatment long enough to give a big enough pool of reports to feel assured of the efficacy of this approach. I had asked Drs. Stratton, Wheldon, and Powell to perhaps tally up at least some basic numbers from their case experience to help us out with this problem, but this would involve problems of confidentiality and use of private data, etc.  

Then, I suddenly realized that we already have a good list of anecdotal reports of response to treatment reported data available to us... right in the Stratton/Mitchell patent materials! (Sheepish, embarrassed grin). So I took it as a project to summarize this data by disease treated. Occasionally I have used the exact wording from the patent materials as they were brief and descriptive. We have the full text referenced in our treatment and links if you want to see more detail.

All reported had with positive serologyi for Cpni using the highly sensitive tests developed by Stratton/Mitchell. I left out a few whose diagnosis was not clear to me, you can see them in the patent materials #6,884,784
All on some form of the combination antibiotic therapy protocol.

Chlamydia Pneumoniae in Interstitial Cystitus

POTENTIAL ROLE OF CHLAMYDIA PNEUMONIAE IN THE PATHOGENESIS OF INTERSTITIAL CYSTITIS. Gregory L. Alberts, Charles W. Stratton, William M. Mitchell, Jenny J. Franke. Vanderbilt University School of Medicine, Nashville, TN

INTRODUCTION: Chlamydia pneumoniae is now recognized as an important human pathogen. As an obligate intracellulari parasite, it is difficult to detect by routine cultures, can cause chronic infections, and may not elicit an acute inflammatory response. C. pneumoniae is commonly associated with respiratory tract infection, but has also been implicated in the development of coronary artery plaques and chronic inflammatory conditions such as multiple sclerosis. Our recent data using polymerase chain reaction (PCRi) analysis of urine revealed that 71% of patients with interstitial cystitis (IC) were positive for C. pneumoniae. These data suggest a potential role for this organism in the development of IC. We present our data using tissue culture detection of C. pneumoniae in both control patients and patients with interstitial cystitis to further investigate this association.

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