Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Have you experienced improvement with diet change?

Of course the visit to the ID doc was a disaster. First, none of them believe in the connection between infection and AI, or between klebsiella and AS. And this one did not believe I could have a UTI and not have it show in a urine culture. Not even my urologists believe THAT. So he charged $155 and said he couldn't help me.

Since then I have written to Dr S in Iowa. I think my secondary infection scared him off from answering (I did initially hear back from him) because it seems that this particular mycoplasma is resistant to Clindamycin.

I feel ok right now, being as I am on Omnicef. But I do not know of any doctors who will continue to prescribe that for me. I have seen 4 so far. I think if my infection did not return so quickly, they would not be as concerned with giving it to me.

I have stricted up my diet. I am wondering, how long does it usually take to have a reaction to a particular food? I notice that about an hour after dinner, my hip/SI joint goes bad and radiates to my groin and down my leg. I am guessing it is something I am eating at dinner, but is that reaction too soon? Am I looking at the wrong meal?

The only gut problem I have had this last several years is constipation. I am on opiates but until a few years ago they did not cause constipation, so I am not convinced that is what is doing it now, although surely it contributes.

Since I have stricted up my diet, the constipation has gotten much worse. I react to every over the counter laxative I have every tried (very many). I usually just use a gylcerin suppository and that works fine, but now those are not working either.

Is there anything natural to be taken that can help? I really don't want to nor could I drink enough prune juice to ever help (tried that too). I would say so far the diet has helped enough that I am going to keep it up, but I need to figure out this constipation thing. And from where my next abx are coming from too. Or even what kind.

John, can you tell me how often you took those 11 day rounds of Cipro and how you knew that 11 days was the magic number? What were your signals to do that?

Thanks!

Hello, Jax:

I spoke with many microbiologists (and a few bacteriologists and even ID physicians) and it seemed an average dosing period we were focusing upon, due to the germ's reproductive cycles in humans, was 11 days. It would have been easier to use 10 days (a standard commercial cycle), but adding the extra day made a bigger difference in their models than any other possible change. It was the cycle that I chose to use and has been very fruitful if I am not really that obsessive about such a cycle--9 days could work for some and others might do 'better' with 12 days.

I took between one and two months between cycles of the Cipro during which time I did fasting, fruit monodiets, cleansing, probiotics etc, but mostly stayed on the bacteriostatic tetracycline.

Certainly, I got very lucky as everything I did seemed to work, once I began taking down existing colonies of the Klebsiella. When experimenting with antibiotics I did not always know about, but only later found they had no activity against our nemesis germ, it was obvious to me within four days or so because AS symptoms would begin to return, even with strict diet.

During a period lasting eight months after stopping all antibiotics, I was able to totally control AS symptoms using diet alone, whereas before I had gone through several cycles, diet just barely--but perceptibly--helped.

If I were still using the antibiotics, I would add colloidal silver and maybe Tanalbit to my regimen, the former due to information from Mercola.

HEALTH,
John

Thanks John, that was enlightening, for sure.

I just went and read up on the Tanalbit as I had never heard of that before. The thing that scares me there is the constipation. Seems most AS people's gut problems is the opposite of that. I see they suggest magnesium as a way to combat the constipation but that gives me migraines. I have had zero luck combating the constipation. Usually about the 3rd of antibiotics, I am ok for a day or two but before and after, things just don't move!

This part worries me a bit also:

"Tannins may interfere with the absorption/effectiveness of medication."

It says check with your doctor(s) about that part, all of whom I am sure know nothing about Tanalbit!

I guess I am lucky in that I think I am much older than most of you here. If I can just make it 9 more years! My husband will retire in just less than 4 years and if we could have 5 years of retirement together, that would make me very happy.

Diet seems to be helping pain a bit and I have slightly more energy. But it could also be because I just finished the round of abx.

John, what do you suggest when the antibiotics that I take to combat the Klebsiella are also causing a secondary infection that seems, according to everything I have read, to be highly resistant? The secondary one is enterococcus faecalis. And from what I have read, it is even scarier than Klebsiella. They have done testing that shows a significant rise in enterococcus faecalis in women who have taken other abx.

I am doing probiotics and have stuck to the diet really good. Not saying that I didn't unknowingly eat something that I shouldn't have, there seems so many variables. I put garlic powder in my guac the other night. I don't believe I had any reaction from it but I really don't want to feed these Klebsiella anything!

Hello, Jax:

It is important to decide upon an antibiotic protocol that will not cause overgrowth of C. diff, C. albicans, and many other things. I don't have any suggestions except to try and regenerate Your flora--some probiotic yoghurt, sauerkraut, kim chee, etc. Also, a cleansing should involve the enteric coated oregano oil, bitter melon, wormwood, etc. I have not studied the target germ, but it would be important to know what affects this enterococcus faecalis and get the correct agents to take it down.

Not sure of the agent You were using, but I switched antibiotics often.

HEALTH,
John

I am very upset that I had a $5000 test to finally get these two infections to show but it did not include ANY sensitivities. Ridiculous. And I know of no other test that will even show these infections.

It is very hard to try to take down an infection without knowing the sensitivities.

Slightly more hopeful today. I saw my rheum doc and he agreed to give me 3-4 rounds of both cipro and omnicef. With 11 days per round but only one round per month of one of them. My plan is to not take either of them until I wake up with that feeling that I need to be in the ER.....which usually happens not all that long after I finish a round. He was not receptive to me having any type of tetracycline along with the other two. Maybe if things go well he will let me add something like that in a few months.

I will say everything feels different this time. It's way too early to be claiming any victories. But I do think I have balanced the, ahem, female flora, that was causing problems. And the UTI symptoms, so far, are mild.

I really have no inflammation to speak of. Slightly more this week than last, but not enough to knock me down. And my energy is not as good as last week, but still better than in a long time.

So at some point I may have to eat my words (no pun intended, lol) and say that the diet IS helping.

I have been taking Floragen3 twice a day and (sorry guys) douching with organic yogurt and purified water twice a week. This is the first time I have not needed Diflucan after a round of antibiotics. And the other symptoms along those lines have not returned as of yet.

I know I need to find a secondary probiotic so that I can switch up. But I like that the Floragen3 is refrigerated and behind the counter at my pharmacy. It is not any more expensive than most probiotics. I need to make a trip to a health food store to find another refrigerated probiotic with different strains in it.

I am off dairy right now so not eating yogurt and sorry, I would not eat sauerkraut or kim chee for any reason ever. I also try to avoid supplements due to other meds I am on, worried about interactions. If the current flora protocol fails me, I will consider some other options.

It has only been 13 days since my last antibiotic, but that is already a record for me without a total relapse. At this point just saying: fingers crossed.

Just got my blood work back and my cholesterol has skyrocketed, 331. I am inclined to believe in the myth of cholesterol, but none of my doctors feel that way and now that it is this high they have pretty much demanded on go on it. Yes, I could fight, but I have to pick my battles to stay off biologics and stay on antibiotics.

Anyway, my question is this. I have COQ10 to take with my statin. I have had it here awhile and it's expensive so I don't really want to toss it for a different brand. It does say gluten free but it does have Soy/Soybean Oil in it. Could there be enough of it in few capsules to really have that big of an effect on me?

I am also a bit curious as to why most people seem to get a lowering of cholesterol when they go on low starch or low carb diets but I seem to have the opposite effect? Same thing happened to me on Atkins (years and years ago).

Hello, JaxTee:

Regret the numbers You have produced! Good approach with the physicians; keep them mollified by being cooperative as much as possible. No issues with soybean oil--it does not contain starch.

Most of the cholesterols that we measure in blood testing are produced by the liver in response to the metabolism of starches; chronic hyperinsulin condition plays some role--usually. Eventually, we have trouble processing that excess insulin and this puts greater demand upon our livers. That's an oversimplification, but how it has been explained to me: I have "metabolic syndrome" with moderate cholesterol levels and right on the edge of being diabetic. EVOO helps with the ratio and niacin in moderation (it can kick up my gout) helps lower the numbers. Good to take NAC, also. Using bitter melon, ALA, and juniper berry capsules for the diabetic issues; will report on this once I find out whether it is effective.

HEALTH,
John