How do you know if you have CPn
I have been treated with Flagyli, amox, rifampin, zirthro & nystatin for one year without any improvement. I started to have High liver enzymes about 6 months ago and that has not changed. I am starting to think this is not related to CPni. I am considering going off all together. How do you know if it is working. This is my first post. Thanks.
- Login or register to post comments
- Email this page
- Printer-friendly version
Sickinsac- (a great username invention by the way) It's hard to make much comment from the info you presented. It would help to tell us more:
In any case, high liver enzymes usually seem to warrant a change in protocol from most of the doctors familiar with the CAPi, and I wonder why you have not been asked to stop the Rifampin which is the most liver toxic. Additionally, you are only on one anti-replicant (zithi) and potentially risk creating resistant organisms this way.
Combined Antibiotic Protocol for Chlamydia pneumonia in Chronic Fatigue Syndromei & Fibromyalgiai- Currently: 150mg INHi, Doxycycline/Zithromycin, Tinidazole pulses. Northern Ohio, USA
CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral
What is your temperature? Is it 98.6 F? I have thyroid hormone resistance or make reverse T3 instead of the active T3. Blood tests won't detect either problem. I take Cytomel to get my temp up to normal.
Have you been checked for hypercoagulation? Microbes cause a buidup of fibrin. so the antibioticsi have trouble at getting the bacteria. I take nattokinase or serrapeptase for this. In years past my blood was so clotted, when nurses tried to draw blood, it would clot before the tube was filled.
Most of us probably have coinfections, including viruses.
Combined Antibiotic Protocol for chlamydia pneumoniae in fibromyalgiai- Currently: minocycline/Zithromycin, Tinidazole pulses
minocycline, azithromycine, metronidazole 2007-2009, chelation for lead poisoning, muscle pain, insomnia, interstitial cystitisi (almost well), sinus, dry eyes, stiff neck, veins, hypothyroid, TMJ, hip joints (no longer hurt)
[quote=Janice C]
Most of us probably have coinfections, including viruses.
[/quote]
Yes, there is a good chance of that from what I've read. The doctor I've found that is now treating me has done research into another possible infectious agent with MSi and thinks that a combination of pathogens might be what's going on with certain diseasesi.
best, John
RRMSi/EDSSi was 4.5, 5, 6, 6.5, 6.9999, 6.5 on Wheldon/Stratton Protocol beginning 04/12/2006
naci 4x600 mg/day
doxycycline 2x100mg/day
azithromycin 3x250mg/day MWF
metronidazole 3x400mg/day then 3x500mg/day
Sorry for being so brief on the first post.
I am on Zithro M,W,F, rifampin 2x day, 2 tabs Nystatin 2x day, Amox 2x day. Flagyli 2x day - not being pulsed, it is daily. Just in the last couple of weeks I have noticed twitching in my right eye as well as the muscles on the sides of my head above the ear. Very painful when it happens. Several weeks ago I was on Biaxin (in addition) for a ingrown toe nail infection and it seemed to provide an additional slight improvement. When I came off the 2 week regiment I developed Faliculitis by my ears and under my chin. This went away by taking Vit A & D but was just returned with the Foggy head and ear pain. I have been on this cocktail for over a year now and my pharmacist is encouraging me to get off of it due to potential resistant problems.
My temp runs below normal at about 96 or less constantly. I have not been tested for hypercoagulation. I do remember feeling better by last August but that quickly faded when I was switched to the INHi cocktail which I could not tolerate. When switched back I have never achieved the same success and my ability to work has diminished also.
I am concerned that the winter weather this year may put me under as it almost did last year. I feel as though this disease is progressing and I don't know how much longer I will be able to battle it. I am getting weaker although my weight is increasing and I experience bloating. Any thoughts or tests that could be beneficial?
Sickinsac- That you are working with Dr. Powell, who is one of the respected experts in this treatment process, suggests there's a lot more going on with your case than meets the eye. I would be hesitant to suggest anything without expert understanding. I know Dr. Powell has given "time off treatment" especially when liver enzymes are up, so i would not want to second guess why he is continuing despite the elevated enzymes.
The low temp suggests low thyroid. Has Dr. Powell looked at thyroid supplementation for you?
Combined Antibiotic Protocol for Chlamydia pneumonia in Chronic Fatigue Syndromei & Fibromyalgiai- Currently: 150mg INHi, Doxycycline/Zithromycin, Tinidazole pulses. Northern Ohio, USA
CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral
Anti-replicants for Cpni are typically Doxycycline, Azithromycin or Roxithromycin (in Europe) & INHi. Rifamcini targets the conversion of EBi's to RB's (just prior to the replication phase). Amoxi, like NACi, targets EB's. Although most people are using NAC as it doesn't effect bowel flora as does amoxi, Dr. Powell has found some good reasons in some cases to use amoxi, given that NAC can stimulate other biochemical pathways.
By your protocol, it looks like he's trying to hit it hard from all angles. From your post, you obviously feel he's improved your function from the nonfunctional, so it sounds like you were a basket case when you started.
Combined Antibiotic Protocol for Chlamydia pneumonia in Chronic Fatigue Syndromei & Fibromyalgiai- Currently: 150mg INH, Doxycycline/Zithromycin, Tinidazole pulses. Northern Ohio, USA
CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral
I'm trying to learn all of this to help my hubby. Is Flagyli a non replication? Right now hubby is just on Ketek, and NACi. Has been through courses of Doxyi, Zithi and Flagyl. One at a time.
This all boggles my mind sometimes.
Hubby DXi 10-05 by LLMD; positive for Borreliosis; took 200-400 mg Doxyi for 2 mons; followed by zithi daily for 6 wks; small does of flagyli daily for 3 mons; tested by ID for Cpni 6-06; Tested positive and took Ketek for 6 weeks; Began Capi protocol
Hi Karma, Flagyli is a killer antibiotic, the other two are the non replicating agents. You get more reaction from a killer which is why we take it in pulses, to allow the body to cope with the fall out and recover before you give it another dose of garbage to deal with.
If you look in the Cpni Handbook under the CAP/Wheldon protocol (click on this link it will take you there) you will see that your husband has to take two antibioticsi in conjunctions, to stop the Cpn from replicating and when any reactions to those two has settled down he should take the flagyl as a pulse. My daughter has been taking the two anti-replicating antibiotics since May and has not yet done a pulse because she was having reactions to them. The NACi causes the Cpn elementary bodies to die off before they reach the safety of the cell, therefore stopping it from spreading further. People do have ractions to this too.
Is a doctor supervising his treatment? And does the doctor understand the principles of the CAP? Maybe you should start a blog of your own to ask for help about the various aspects that are bothering you.
Hope this helps.
Michele: on Wheldon protocol since 1st May 2006 for a variety of long standing ailments, also spokesperson for Ella started Wheldon protocol 17th March 2006 for RRMSi
Sussex, UK
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.
Hi,
I'm new here but you appear to have a thyroid problem, check your basil temp. for 10 days and if it remains low for for the ten days take it to your doctor and let him draw blood to check your TSH level sounds as though you have a sluggish thyroid. Good Luck!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!1
You are right Shannie- Thyroid dysfunction and thyroid resistance seems to be a common co-factor with any long term occult infectionsi. The whole endocrine system gets down-regulated with chronic inflammationi and chronic T1 immunei response. Many of us also have thyroid and other endocrine imbalances which are not found through standard thyroid tests. We hope to start a page eventually in the Handbook which will discuss this issue.
Combined Antibiotic Protocol for Chlamydia pneumonia in Chronic Fatigue Syndromei & Fibromyalgiai- Currently: 150mg INHi, Doxycycline/Zithromycin, Tinidazole pulses. Northern Ohio, USA
CAPi for Cpni 11/04. Dxi: 25+yrs CFSi & FMSi. Currently: 250 aithromycin mwf, doxycycline 100mg BIDi, restarted Tinii pulses; Vit D2000 units, T4 & T3, 6mg Iodoral
Ella also has Hashimoto's, a form of hypothyroidism. We are hoping that the treatment will rectify this. Michele: on Wheldon protocol since 1st May 2006 for a variety of long standing ailments, also spokesperson for Ella started Wheldon protocol 17th March 2006 for RRMSi
Sussex, UK
Michèle (UK) GFAi: Wheldon CAPi 1st May 2006. Daily Doxyi, Azi MWF, metroi pulse.
Hi Jim,
I know, Sarcoid does the same thing to the body but there is a site that list doctors and talk about other test for endo disorders. It might help someone that need help until they are fully on the protocol. Dr. Guttler, gave me my Doctor here in New York, they do not do the standard test as other Doctors. I hope this site can help someone until they get the protocol going.
If the standard test does not show anything ask for the thyroid antibody test.
check www.thyroidologists.com
Dr.G.
Richard B. Guttler MD, FACP, FACE
Clinical Professor,
Keck School of Medicine
University of Southern California
Director,
Santa Monica Thyroid Center
www.thyroid.com
President,
Academy of Clinical Thyroidologists
www.thyroidologists.com