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Hi,
I've been ill with chronic autoimmune pancreatitis for several years and have just found out about AP treatments for rheumatic illnesses. I'm wondering if anyone has had pancreatic problems as part of their illnesses that have been treated with antibiotics? I'm in research mode and would be grateful to hear from anyone who might have some information that would be useful to me. My doctor is willing to prescribe….Thanks,
LilaPlease make sure you get a systemic antifungal this is extremely important.
I can only say that if it were me I would certainly give it a go. Maybe Zithromax, because it stays in the body longer. Even if you only took it every 10 day like I do. So many cancers are from infection. Even my Gyno admits they are viral
They keep saying they are viruses but forget to add the infection after it. All these so called viruses are highly infectious.
We also have a chronic fungal problem worldwide with no systemics having been given to address this problem either in the past or present unless you jump up and down. It is now escalating and giving everyone a higher chance of developing cancer and disease. Aslo effects the brain and a persons behaviour.
I wish you all the best in your decision. Maybe someone else might have a better suggestion. I do not take things lying down either and I commend you in even considering it. It is people like you who will help others survive it.
Hi Lila,
As your doctor is willing to prescribe, is there any chance he/she would also be willing to consult with a very experienced AP doc such as Dr S in Ida Grove, Iowa? I personally haven't heard of anyone using AP for AI pancreatitis, but that's not to say it hasn't been done. I would just think that one would have to be very cautious while using antibiotics due to the risk of elevated enzymes and possibly creating further damage.
Just a thought, but it might also be a good idea to consult with a nutrionist and/or ND and/or DO, to see if you have any contributing gut issues that might need resolution before trying AP.
Mycoplasma are incredibly stealth-like and have a proclivity for settling in collagen tissues, but are also adept at hiding out in our organs, too. Some people find they have the strangest herx symptoms after starting AP. I had very scary palps and pvcs after starting azithromycin, which were transient and have now resolved, indicating that I probably had some type of myco lingering in my heart. For others, it might be the lungs, brain or liver/GB. Not saying AP wouldn't work for your condition (I just don't know, to be honest), just that I would think it would require an AP doc with a lot of experience to guide you carefully through the process, if they think it might help you. The thing I wonder about with this is that some APers find they have to actually come off antibiotics to give their body a rest, if they experience elevated liver or pancreatic enzymes. So, perhaps this is something you could ask Dr S about. He's treated thousands of rheumatoid patients and trained under Dr Brown, so if anyone has encountered your condition and knows whether AP would help, it would likely be him.
All this is speculation on my part, but in your position, if I had an open-minded doc like you, I think I'd definitely ask if they'd consult with Dr S, first, to see if AP would be beneficial and, if so, how treatment should be managed optimally.
Do hope you find some answers soon, Lila, and please let us know how you get on with this.
Peace, Maz
Thanks for the quick replies! Maz, your post is a bit sobering. Is there a risk for acute pancreatitis using the AP? or is this a concern on your part that you're not sure of? I will contact Dr. S. in Iowa. I hear that he has time once a week where he takes patient phone calls.
[user=374]Lila[/user] wrote:
Maz, your post is a bit sobering. Is there a risk for acute pancreatitis using the AP? or is this a concern on your part that you're not sure of? I will contact Dr. S. in Iowa. I hear that he has time once a week where he takes patient phone calls.
Hi Lila,
To be honest, just thought the above may be pertinent to mention…although, I'm only a patient like you. 😉 I'd done a little googling and found that mycoplasma are seemingly able to take up residence in the pancreas, but just haven't heard of anyone using AP for it….but this doesn't mean it isn't possible. As I say, I just don't know enough about this. In fact, when you consult with Dr S, it might be good to ask about mycoplasma testing, which he does do.
Just thought you may want to be aware that some APers have reported elevated enzymes from AP. I don't think it's really known whether it's a herx reaction or whether it is a drug-related side-effect. In some respects, it may be similar to the Lupus-like syndrome that some can experience from minocycline. It may be herx due to a sub-clincial manifestation of Lupus or it may be a drug-related side-effect. No one can really say for sure, which is why Lupus patients prefer to use an alternative abx, like doxycycline.
There are some recent postings on the BB from Fran who is currently going through a patch of having elevated liver enzymes from using azithromycin (to find her recent posts, just go to the search box and type in Fran and all her posts should come up) and she has had to take a break from her abx as a result.
My thoughts about this were just things that came to mind that seemed worth mentioning … bearing in mind that we are all patients or family members of patients here, so everything shared can only be “suggestion” or “opinion” based on personal experience and info we've collected along the way. It may well be that certain classes of abx can be used for AI pancreatitis, but…again…I just don't know enough about this to give you a heads up and wouldn't like to lead you astray. However, a consult with Dr S should help clear up some of these questions and just felt they might be things you could ask him during a consult.
I'm really putting it out there for you that Dr S can help with this. 🙂 Both he and Dr F in Riverside, CA, are considered to be the top AP docs who believe in infectious causes for our the so-called “AI” diseases. Some other resources you might find helpful would be to contact one of the patient advocates on the http://www.marshallprotocol.com site or see if you can speak with Dr N at http://www.immed.org
Please stay in touch and let us know what you find. Wishing you every success with this!!!
Peace, Maz
Hello Lila,
Your post caught my attention, and besides a desire to help you brainstorm this subject, it aroused my natural interest and curiousity.
This link is very interesting and has a number of paragraphs that might be helpful in understanding more about this problem… and related problems. I have to confess because I'm rushing, I haven't spent as much time with this article as I'd like.
http://www.health-science-spirit.com/overcome-arthritis.htm
[If you don't have time to read the whole thing now, you might open the link and then click on “Edit” on the top line at the top of the screen; then click “Find”; then type in “pancreatitis”. There were a couple of hits that were quite interesting on this subject. Reading the whole article is something I hope to do myself.]
In a quick “nutshell”, it seems to me that the pancreatitis and other diagnoses mentioned would very much benefit from improving the pH balance of the diet, addressing anything that could be causing overgrowth of candida yeast/fungus, and generally addressing a condition of dysbiosis.
[Dr. Leo Galland has excellent writing on this subject, and this is a link I just found from a search:
There could be lots going on in the pancreas that is being made worse by the organisms creating an even more acidic condition. So any way you can improve various aspects of your overall pH balance might nudge the diagnosis in a better direction, and can help cut down the unfriendly organism population.]
In the above article under the first link, from a glance of the “pancreatitis mentions” it certainly seemed to lump this dx along with other RA-related diagnoses.The suggestions mentioned by Maz and others about finding a knowledgeable AP physician, such as Dr. F in Riverside, and even going a bit “out of the box” and going to Doug Kaufmann's site (there are numerous categories of physicians he has as contacts who've written chapters in several books he has written and Kaufmann and they may be of some help. I have never watched his TV program, but have been aware for some time that he is dedicated to helping to solve the seeming devastation of such as candida/fungus — thought in some groups that fungus and cancer are the same things… and those of us who have these early yeast/fungal problems certainly need to beat the bushes to learn all we can. In this area, as well as many others, our mainstream medicine has lagged terribly behind.
Forgive all my ramblings, and hope some light can be found in all of the above. This type subject and changing a good many things in my own life has certainly made a positive difference this past year.
Best to you,
AF
af, what is your new protocol maybe it could help get new perspectives on ap. thanks for any new info.
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The short answer: Tish, in a nutshell, for me it has meant coming to the realization that I have become inately, unhealthily acidic from all that has happened during the 16 years of illness, and am learning how to modify this. Diets today are generally too acidic for many of us, even as we've been brainwashed to believe certain things about the pyramid that aren't always true. Health professionals don't seem to have respect for information about acidosis and tend to discount it, so the patient with this problem has to research and learn on his own. Gentle detoxification methods can be helpful. And finally, the new perspective I've learned about AP and my status quo is that I have to work harder to do an effective balancing act… striving to keep overall pH in balance while adding necessary-for-me AP (Minocin/pulsed — also acidic) back to my regimen. Being acidic and off AP for three years resulted in more damage. Thank heaven I'm a born optimist…. wonder if I'm kin to Churchhill (God rest his soul) who said “never, never give up!”…. I believe it is possible to make things better and better, and I've seen progress since early 2007 after figuring this out and working on it. I do believe a common thread for all of us is that disease thrives in an acid environment, and that if we can achieve pH balance, we not only can but will get better. AF
The longer answer:
I did really well on AP, very noticeably after about the 4th month. However, in spite of feeling so much better and feeling almost normal, rather isolated painful conditions would arise. No answers from my physician(s), but I'd find such as Dr. Balch's writing that pointed to gout or pseudo gout — but my AP doc said my uric acid levels were normal. (Learned later there are many kinds of acids that are created and exist in our body, that can cause us problems if not neutralized and excreted.) When Balch said tetracyclines and meat could cause these problems, I virtually gave up red meat and pork. but kept AP and the pain went away (the underlying problem didn't, but reduced enough to stay afloat without the pain.
Similar episodes would occur later on. With a sudden onset of uveitis in 1999, and being told I had to be on methotrexate to save my sight, I tried to take it, and overall back fascia and bone pain was terribly painful, and felt like I was being beaten with hammer. I've always been surprised that people write it helps them so much, for it had the opposite effect for me. Later, I read warnings about what Mtx can cause — seems like for some it is helpful, but for others just the opposite, and our liver and kidney function seemed to be important in determining which. The last and worst huge sudden onset was when I had been prescribed and took two pulsed abx's. After about a month, there was a huge horrendous pain attack — so bad and lasted so long, I got off all abx for three years — from 2003 to end of 2006.
It was only during 2006 (when the back fascia pain and overall bone pain became almost unbearable) that the reason for these reactions became clear to me. This was because of the extreme acidity of my own body, and how things were made MUCH worse when acid-forming foods and medications were added to what my body had to try to handle… to try to neutralize… and COULD NOT!
Learning this and incorporating a diet with mostly alkaline-forming foods (my blood type A is known to be deficient in HCl needed for digestion of protein); taking special mineral supplements that are more easily absorbed and utilized and needed to neutralize acidic waste; using pH drops and small amounts of green drink powder in pure water to make drinking water more alkaline and help flush acid wastes from the body. There are more.
I had to get back on pulsed AP at the same time I discovered the truth of my acidosis, because with my body so acidic, more and more unfriendly bacteria were thriving and creating more problems for me (they love an acid environment and multiply, and their excrement itself can make us more acidic). All of these things affect our cells and our oxygen, even changing aerobic organisms into anerobic… more problems.
Keeping our stress levels down, getting moderate exercise, deep breathing, various forms of detoxification, are other things said to help this problem.
Younger patients can be much more resilient, but bottom line it seems to be an individual thing. I believe the treatments I received the first two years I was chronically ill (a few years before my rheumatic dx) did much damage to my body, and compromised my body's ability to repair itself. But, no doubt, the rigid health program I put myself on (though for me not ideal) at that time is probably the reason I am still around today.
I'm a stubborn lady, and this stubborness has paid many dividends over the years when it comes to solving illness problems. I believe there are answers to our problems, but it also seems those answers much too often have to be found by the patient, because mainstream medicine where chronic illness is involved always seems to have just the right new RX to write for us… and may in the longterm make matters only worse. Often, the things that mainstream medicine says have no merit, have been the things that have actually solved problems for me. Of course, Dr. Brown and others have written RX'es that definitely have been of help in turning things right side up!
AFDear AF,
I've just got back into town from visiting my physician in CA. I live in CO, so it was an extended trip. Thanks for all of the information and links. I'm going to have to research more and do some reading. In the meantime, I'm on the AP, alternating with prednisone that will be tapered off next month. So far, no problems with the AP. Thanks for your tips and research.
I'm very touched by the open hearted people who have been helping me on this journey. Thank you all!
Lila
af, i just got back from gi doctor, and really was upset, came back to work, and found your answer, surprisingly like me. the info sounds so much like me. no uric acid, but big toes hurt. now the acid is so bad i'm on nexium. i totally agree with you about acid. doc more less said nexium may not be enough so take malox, mylanta, tums, pepcid whatever to stop the acid. he said with sd patients acid just seems to form, and when you say sd everything is caused from sd. i know now the acid has got to be controlled but not with all the drugs. if you could guide me in this endeavor to get rid of acid it would be most appreciated. i was so excited about your answer that i'm probably long winded and not making any sense but please bear with me. I just started back on ap therapy.
Hello Tish,
It may be that you have too little stomach acid (HCL) instead of too much, and that this is causing the problems. In General Discussion topics, there are several topics that discuss acid/alkaline and HCL, and you might want to look for this topic and read the posts. I just looked for the link to the long HCL article, which I believe would be helpful to you, but didn't see it. Will post it again when I locate it (hopefully tomorrow). My adding a supplement (HCL & Pepsin by Solaray) DURING meals when I have meat protein has been helpful. On the bottle it says if you have only salad (w/o meat) or fruit, you do not need to take the supplement.
We'll discuss this subject some more. Late. Must go to bed.
AF
PS Just found it. Warning: It is very long, but I believe very important.
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