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

ok, so seeing a new doctor, like that she is looking at things differently than most. like that she is "concerned" about the inflammation, the metabolic syndrome, the possible adrenal fatigue, etc. like that she collects data, blood tests, blood work to test for food sensitivities, stool sample analysis. not sure i'm comfortable with all the supplements to treat each deficiency rather than asking what is the root of the problems.

anyway, here's a synopsis of the results, i'd like some analysis as to the meaning of some of it.

IgG4 Food Reaction testing. Can anyone explain it? how does it differ from the normal allergy tests? what about false positives? false negatives? Results were severe for casein and milk (don't consume much dairy, did like 20 years ago, but stopped when developed gastritis 18 years ago), just some yogurt, stoney field each day, maybe a small piece of cheese, other than my yogurt, won't really miss the dairy. i have finally found a calcium supplement, citracal, so don't need the dairy like i did before i found the citracal. also mild to egg whites and egg yolks. again, i don't eat too many eggs so not too big an issue. but could they be false positives and how would one know? i need to do a lot more reading about all of this......

stool sample testing: everything looks good except for no lactobacillus and i eat stoneyfield almost every day so how is this possible? but the e. coli and bifidobacterium are good. however bacillus species indicate possible pathogens. candida very low, that's good. everything else good. but i'd like to know what happens to my lactobacillus after i eat my yogurt? one of the great mysteries of life!

metabolic syndrome acknowledged: middle weight keeps creeping up, cholesterol a bit high, mostly due to LDLs, HbA1c 6.0, would be good if diabetic which i'm not, shows that i'm prediabetic, but blood sugar was 96, better than the 105-110 that it used to be, HDLs up to 57 and triglycerides are normal, thus doing a pretty good job with the diet and exercise but still LDLs are high, weight is creeping up, blood sugar should be lower. doctor would like to see a change in this, so she prescribed conjugated linoleic acid. from what i read, sounds like it could do a lot of harm. studies with mice vs rats differed and we are neither. could cause loss of body fat but increase of fatty liver, that's not good. read one place cautioning that it could increase chances of going from prediabetes to diabetes, i've been good at keeping it from doing that for about 10 years or longer now, so took note of that. really don't know much about this. anyone else have any knowledge? anyone else use it?

also told to take fish oil. it never did do anything for me in the past but maybe not enough. she told me to take 4 grams a day. i have some burpless / tasteless fish oil at home. i think its perfectly safe so may go ahead with that one.

but the scariest thing is that she had me buy a supplement for DHEA because mine is on the low side. but from everything i read today, big warnings against its use. that we just don't know what its there for in the first place, don't know if supplementing it is ever good. its a steroid, so really shouldn't take it. what do others think?

seems i probably have adrenal fatigue, my morning cortisol levels were low. i have a saliva cortisol test to do where you collect it throughout the day. will do that, see what the results show. then will talk to the female endocrine PA at the GYN office. the one who put me on progesterone, gave me the cortisol test kit. when i pee'd in the bottle for a day, that was ok, but these other tests apparently better. but before i go supplementing, i'd prefer to try to get 8 hours of sleep every night that i can, see if i can avoid the supplements. she had talked about B12 maybe. also my iron is a bit low. but when asked if i was tired, fatigued, i figured not really if i often get by on less than 6 hours of sleep a night due to too much work. i figure how could i do that if i had adrenal gland problems? but she wrote on my form "chronic fatigue". i think she wrote that before we even talked or she didn't hear me, though i made it pretty clear. or maybe not sleeping enough is what is causing the problem with my blood test results. maybe i normally have so much energy that now i'm just more like a normal person when it comes to energy. i really am like the energizer bunny in a lot of ways when it comes to going and going.......i don't know, too much information for me to take in.

Homocysteine borderline high. she was not happy with my CRP being 4.6, i told her that's the lowest its ever been. funny how each doctor interprets these things differently, most of the doctors are happy if its below 10, she's not.

but really my big questions:

any feedback on DHEA supplements or conjugated linoleic acid supplements appreciated. i'm probably not going to take either from what i've read so far.

on the other hand, the lactobacillus probiotic and the fish oil can't hurt.

plus i have a policy of never starting more than one thing at a time since i already take 9 different drugs and/or supplements and need to keep it all straight to know if something is working or if something is giving side effects.

my brain hurts!

i'd like to help both the inflammation and metabolic syndrome as naturally as possible, including not too many supplements and especially no controversial ones.

so far, i've been able to reduce my blood sugar to below 100, increase my HDLs and decrease my triglycerides through diet and exercise just wish the LDL would follow suit and wish the weight would stop piling on and wish the BP would not continue to go up as well, though if i can get the weight down then maybe other things follow. anyone any advice on how to do that?

and the inflammatory arthritis / musculoskeletal stuff: the LDN is helping, working with rheumy to find an antiinflammatory (about to start the 4th nsaid with him, 11th overall nsaid / cox2 inhibitor), and the chiro 2x a week is helpful, can't exactly explain that one but whatever he does works. or, i just haven't had a flare for awhile.

thing is, i like when i have doctor who's advice i always trust. like my endocrinologist. whenever i look up what he's told me, what he's done, what he suggests, it always seems like very sound advice.

but now a bit worried after this doctor today prescribed the DHEA. not sure how i want to proceed into the future.

just don't want to do anything that could be potentially harmful.

Wow...you are right...that is a lot of data! All that I can add it that I think fish oil did hurt me. I was half way into a bottle and wondering why my gut was so upset. I stopped taking the fish oil and then I felt better. My GI said the fish oil could have upset my UC.

In some ways that all feels like too much information. I applaud you for doing what you have done already with keeping the prediabetes under control and probably also the cholesterol etc.

I've been a bit confused about the whole Ig thing so just googled and came up with the following:
IgM - is the first antibody that appears in response to initial exposure to antigen
IgA - mucosal immunity
IgE - plays important role in allergy and especially implicated in type 1 hypersensitivity reactions
IgG - involved in secondary immune response (after IgM)

Not sure if those simplistic explanations help or not.

I think I'd be uncomfortable too about treating each symptom and not getting at the root cause of it, and probably want to hold off on supplements, unless they were ones already known to have fairly useful benefit.

I can't do fish oil either for the gut effects. Possibly have a tendency to react to it (though not a true allergy) - come from a family with frequent fish/shellfish allergies, so I'm pretty careful not to push the fish bit in my diet too much - just have the occasional plain white fish, and avoid shellfish.

I'd go with the "if in doubt, leave it out" theory.

Sue, that is a lot of info. May I ask why the new doc? Seems to me that we are in a "suppliment society". What did people to before the vitamin companies convinced us we needed to buy all the suppliments instead of eating a proper diet. The DHEA I'm not familiar with and will have to look it up. Is this new doc consulting with your Rheumy before adding this medication?
Cindy

Hi, Sue,

It looks like you've got a doctor who treats you as a whole body instead of as a cluster of symptoms. That's generally a good thing.

In my humble opinion (I don't even play a doctor on TV, so it's not official and I'm not prescribing), DHEA can't hurt and may help. Everyone needs a tiny amount of androgen. Bear in mind that rat/mouse tests are almost never proportionate to the human body; we'd have to consume a couple of 55 gallon drums of whatever is being tested daily for years to get most of those findings. Even too much water can kill you.

CLA, so they say, keeps the cancer away. There is a little concern that taking large doses of CLA might send a few prediabetics into full diabetes. That has never been proven.

I hope this is helpful.

Shalom,


John

pretty comprehensive testing.

My doc wants my crp under 1.0 He considers anything above 3.0 to be dangerous for the heart long-term

Hi Sue, the siliva test will tell you more about your cortisol, adrenal fatigue, diabetis, and DHEA. My cortisol was very high after lunch, very high at midnight, and fell very low in am. Insomnia is caused when the your Cortisol goes very high. In the am when your Cortisol, goes very low, it's very hard to get going in the morning. In fact until my Cortisol rises after lunch to above normal, I really can't get going. The DHEA tells the doctor if you are actually in adrenal fatigue. My overall score was 60 (below 50 is normal), which tells the doctor I have Adrenal Cushing Syndrome/disease - not yet diagnosed. Adrenal fatigue can cause your body litterly to close down. Hope you have a good Endro. I am hoping for a referral to an Endro, one of the best Adrenal Cushing Syndrome specialist here in Canada (there are not many).

Hope you get help and answers soon.

Hugs
Gerri

thanks john!

funny, the one "supplement" i decided to add today was the fish oil, thinking that one was the safest. though i hadn't noticed anything positive in the past, thought i'd give the 4-5 mg a day thing a month or two, see what happens. but thanks for the warning. think then with your advice, i'll keep at the fish oil but stop it if my bowels become unhappy. also with this information, will wait another week before i start my daypro. one thing at a time seems to be the most useful thing i've started doing.

hi cindy,

i really started seeing her mostly because she's the doctor in town that prescribes LDN and i really don't want to continue with my current local rheumy that prescribes the LDN now that i have the rheumy in philly and he's trying to get me in to see a better local rheumy now. but he wasn't impressed with my reports on LDN though i know its helpful, he wants to find me something that prevents flares, whereas for me, LDN doesn't seem to do that. but i know the LDN is helpful. this new doctor did say she'd prescribe it if i need her to.

as for the various doctors consulting, nobody consults with anybody, i have to keep it all straight. they do all ask me about all the drugs and supplements i'm on, so that's good. and some of the docs, well the endocrinologist at least, thinks about all these things together.

thanks for the encouragement! and advice! i like your motto about "if in doubt......" certainly don't want to create problems where none exist. just looks like i have my work cut out for me in understanding all of this. definitely gonna discuss with other doctors as well before we do too much. and i'm supposed to see her back in 2 months, not sure that's enough time to start whatever i decide to start, one at a time, observe effect, move to next thing, especially since rheumy is working with me on finding an antiinflammatory.

i know she expects that i'll just take her stuff starting right now, so two months would be plenty of time. but i don't think all doctors think about what the other doctors have us doing.

that was one of the things i liked about my endocrinologist right from the start, i was to start synthroid with him, progesterone with the PA from the GYN office, some other stuff with a rheumy, and he was a big proponent of starting one thing at a time and helped me figure out in which order to start it all; the other doctors were just prescribing in a vacuum.

feels like so many balls to juggle some days, but i'm not feeling too overwhelmed really because i know if i just let it all incubate, i usually figure out how i want to approach things. its just when i listen to too many voices that i get overwhelmed and confused.

i'll figure it out, one step at a time i think, but think i need my other doctors' help on this one. in a way nice i have 3 doctors concerned about my endocrine stuff, on the other hand have to be careful its not too many chefs......

looks like i need to do more reading on all that food allergy testing. see what practical implications all those definitions of IgX have.

thanks