Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group Too much data to take in, help please.

Hi Sue,
After reading all comments and tests, I think before starting all medicine, we have to take medicines for the most problematic issues and sometimes with control of the issue we can handle other problems.

Fish oils can develop allergy for somebody.
I am sure you will get good consultation after sometime and improvement in your health.

thanks john,

thinking this morning that i am taking a step back, proceeding cautiously, not sure if it was the fish oil or just because, but tummy not so great last night when i woke up around 5 am or when i woke again later before eating.

i don't like to take things where i read mixed reviews unless i have no choice, so waiting on the DHEA, conjugated linoleic acid.

have decided to do things in this order:

1. wait til break week next week and do my at home cortisol saliva test, send that off. i often make the mistake of getting tested after i start new things, that doesn't really make any sense. often its cause by the time i get approved for a test, couldn't wait any longer and needed to start a med to get some relief, but in this case, will wait another week.

2. start the daypro that the rheumy ordered. rheumy stuff is higher priority at the moment.

3. try the fish oil again. if i still think i'm getting symptoms, wait a day or two then try probiotic instead.

4. add in fish oil or probiotic, whichever one i didn't start yet.

5. discuss DHEA and conjugated linoleic with the endocrine PA at the GYN office and if i can also with the endocrinologist, but he's in step down retirement, only sees patients a few months out of the year, so may have to talk to his PA instead, the one who handled my change in vit D prescription. just need to do more research on these. it sounded like there was more than one way to skin the adrenal gland, metabolic syndrome, high LDL cats, so thinking i may want to try more conservative treatments first. thinking maybe try a statin again for just a few weeks low level like a few years ago, 10 mg simstatin taken for only a month wiped the slate clean so to speak, and that was 1/2 the lowest dosage the GP said would do anything. while that gave me edema and that's why i stopped, it was extremely effective. maybe try another one like lipitor, mabye another won't cause edema, or maybe try a teeny tiny amount. also wondering if i could just find a way to lower the middle weight, just try harder, if i could avoid some of these supplements or drugs.

thanks for helping me to trouble shoot and think through all of this

the CRP is an interesting thing. i've heard / read both that elevated CRP is not good for the heart. but have also heard / read that its an indicator of heart issues unless it can be explained by inflammation in the body some other way, which we have. still to me, its an indicator of less than optimal health so do like that its coming down. when i saw the third rheumy 3 years ago it was near 10, now its below 5, so going in the right direction, regardless of its cause.

its just that homocysteine, CRP, LDLs all point toward heart disease, and my family is seriously plagued with it. very few make it much past 70. i think the issue is that some of my doctors look at me, see that i'm 48, but look younger than my years, see someone who on the outside looks pretty healthy and just assume no matter what we discuss that its not an issue. so glad that i now have a few doctors who do think its an issue. grandmother had pretty significant stroke in her early 50s and quadruple bypass before age 60 and died in her 60s, trying hard not to follow in her shoes, just wish the data didn't suggest that i may be following in her shoes. but working on it.

sounds like you know a lot about the cortisol testing from personal experience. once i get my results, i'd love to pick your brain. didn't know that test could show so much, now very excited to get to it next week during break when i can be home to do it properly.

thanks gerri!

i just had food allergy testing done and only milk / casein and eggs came back as potentially problematic, so think i'm ok with fish / fish oil in terms of allergies.

as for dealing with most pressing issue first, sometimes that's the challenge, figuring out which it is, chicken and the egg, metabolic syndrome and/or inflammatory arthritis, or something else underlying, just hard to tell, but we're working on it.

thanks for the feedback

Hey Sue, first thing I did was get a link to the Mayo Clinic's write-up on DHEA, as I'd never heard of it. Here's what I found:

Mayo Clinic on DHEA

Everything says you shouldn't use it unless under the guidance of a licensed medical practitioner. Which you are. So, it's up to you as to whether or not you actually take it, but it is indicated for type 2 diabetes and for adrenal insufficiency.

OK, casein/milk ... If casein is what you're actually reacting to, you'd probably be OK with goat or sheep milk yoghurts and cheeses (sheep's milk romano is a great substitute for parmesan), since the casein in sheep and goats is different from that in cows. That's why I was taken off cow dairy, which by the way, I no longer follow strictly. Toffuti is NOT ice cream! You might look at Kefir, or Bio-K, which although it is cow dairy based, is of such high quality that I was kept on it after being taken off cow dairy. One tablespoon a day is what I was told to take (as opposed to the label instructions, which have you taking - and spending - way more).

Why not try the Udo Omega 3/6 oils. They come in a pill and I never noticed anything on my sweetie's breath when he was taking them.

Sounds like a comprehensive appointment, and definitely something to continue with. But this is a new doctor and trust is earned. See how you do with the things you trust her on, and take the other things slowly.

Warm hugs,

Sue - might interest:

http://www.medicalnewstoday.com/articles/215298.php

Inflammatory Bowel Disease Treated By New Probiotic
01 Feb 2011

(snip...) "The study was published Jan. 31 in the Proceedings of the National Academy of Sciences.

"While the origin of these bowel diseases is not known, Crohn's disease and ulcerative colitis are two chronically relapsing diseases in which sufferers have an ongoing tissue inflammation that alters the functioning of the intestine. The diseases affect more than 1 million people in the United States and can cause weight loss, diarrhea, abdominal pain and cramping and gastrointestinal bleeding. Current drug treatment is not completely effective and patients can relapse, Mohamadzadeh said.

"Such gene targeting in a probiotic bacteria such as Lactobacillus acidophilus offers the possibility of a safe, drug-free treatment in the near future," he said.

"In the study, the modified Lactobacillus acidophilus entered the gut, which is akin to a battlefield of friendly fire with immune cells attacking the intestine. The Lactobacillus acidophilus acted as the gut's peacekeeping force, calming the overstimulated immune cells.

The probiotic restored intestinal peace by mobilizing messenger immune cells, called dendritic cells. The dendritic cells, in turn, enhanced the production of other functional immune cells, regulatory T-cells that rebalanced intestinal and systemic inflammation.

"They essentially calm everything down and restore it to normal," Mohamadzadeh explained. The next step will be a clinical trial with the new form of Lactobacillus acidophilus.

Mohamadzadeh and his colleagues at the Lurie Cancer Center are currently researching the effect of the new Lactobacillus acidophilus on colon cancer.

Source:
Marla Paul
Northwestern University



Await developments with great interest.

thanks molly, will investigate how lactobacillus plantarum that the doc sold me and lactobacillus acidophilus compare. the one i have is supposed to help gut inflammation, why she gave it to me. as we were talking, at first she was going to give me another since i don't have IBD, but when i told her i did have inflammation and small ulcers in illeum, she switched it to the L. plantarum.

looks like i have a lot more research to do.

also will ask the doc what she thinks about these two different lactobacilli.

thanks kat,

appreciate the advice. hadn't looked at the mayo site on DHEA, will give it a look. since i definitely have metabolic syndrome and she suspects adrenal insufficiency due to the low AM cortisol levels (and maybe some other data that i can't remember and didn't write down), makes sense regarding the DHEA, just not sure how i feel about taking it. also from what i read, there is caution as to level so maybe if i am careful not to take more than the suggested amount by various resources. definitely need to look at mayo site, and that makes me think, looking at other hospital / research lab sites i trust........

funny you suggest goat and sheep dairy, i was wondering the same thing. do like goat cheeses. and romano is my hard cheese of choice over parmesan; IMO romano has much more taste, parmesan seems wimpy in comparison....just went to fridge, not sure the kind we get is made from sheep's milk like the original would be, just says milk, may have to seek it out. also things like mozarella, ricotta not traditionally made from cow's milk either, so maybe there are alternatives out there. i did try almond milk in my tea today, it was fine, no overpowering taste, no funny smell, that might be an alternative. i really don't do much dairy anyway except for my yogurt, but then when you try to cut it out, you realize maybe its in more things than you realize. not even sure what its doing to me, though i'm curious to find out. odd that it said both casein and milk separately, wonder what about "milk" it was testing if not the casein?

reading about omega 3 fish oils vs the 3/6 or 3/6/9, sounds like taking 3 would be best. sounds like omega 6 in our diets more and thus 3 is what should be supplemented. so long as i take a little less than what the doctor suggested, drop it down to about 1/2 of what she said, if i can tolerate it. though wish i could just eat more fish instead........

that last paragraph, yes, i agree, will take it slow. its not that i don't trust her, its just that i'm still a bit leary about all of this, just want to take it slowly. i get overwhelmed when there is too much change too quickly. plus part of it i think is being a scientist; if you want to know what is going on, you can't introduce a bunch of variables all at once........

thanks again