Anyone with Hashi's or ANY Auto-Immune Condition...
Replies
-
I started with just regular Betaine HCL, but I didn't do super great with it. The second suggestion was one that included Ox Bile specifically since I don't have a gallbladder. That and ACV with the mother helped at meals. I eventually switched the ACV to pill form, at my PCP's suggestion, using the liquid for emergency acid break throughs.
I use Now Brand Super Enzymes and Nature's Life ACV pills. I got both on Amazon, but grocers that carry supplements may also have them. I can tell when I don't take them.
@anglyn1 shared this link in another discussion, and the link under #5 was the direction I took:
nobunplease.com/diarrhea-low-carb-keto-diet/
scdlifestyle.com/2012/03/how-to-supplement-with-betaine-hcl-for-low-stomach-acid/
I couldn't find a good therapeutic dose with just the Betaine HCL, but I do add it if I have a huge meal or something, even now, until I finish up the bottle. Oh, and the capsules versus tablet - absolutely capsules all day long. I didn't absorb well from the tablets.
I do still have some concerns as to not tolerating the Betaine HCL alone, but that isn't huge in my face currently.
@macchiatto1 -
rugged1529 wrote: »@KnitOrMiss I don't think I have anything else besides what was stated. I don't think I'm expert enough to give deep advice to be honest. @GaleHawkins I think I may be sleeping on the wobenzyme and I'm also going to look into the Pycnogenol as well. I bought the wobenzyme but it's sitting in my medicine/vitamin bucket.
Wobenzym biological action is prevented by the plastic container.
Start slow but as noted I did 20 tablets 4x daily for 30 days with no side effects except billfold pain. Due to the Poly MVA and Artemisinin testing currently I am only taking Wobenzym once daily currently because I like to be off food 2 hours before and one hour after taking Wobenzym so when taking Poly MVA 4x daily with the same food spacing I run out of hours in the day.
livestrong.com/article/161756-benefits-of-wobenzym/
0 -
KnitOrMiss wrote: »rugged1529 wrote: »Hello
I was diagnosed with RA about 6 months ago. I kept getting flare ups in my knees (elbows hurt too). They started me on methotrexate which I hate because of side effects. When I discovered keto, I was doing it for weight loss but notice I was feeling better and I started reducing my medicine. Today I feel the best I've felt in months (maybe a couple years). My therapist also stated to me that my body would need to heal before losing significant weight. In any event I feel great. Weight Loss, now, seem to be a welcomed side effect.
@rugged1529 ... @GaleHawkins - since you avoided medications like this, do you have any suggestions with all your protocol studies? I know RA is a different beast than most, but I was just wondering... @anglyn1 ?
@KnitOrMiss all of the protocols that I have put myself on over the last 2.5 years were geared to revert stage 3 and 4 tumors back to all normal cells. It turns out they are good for RA and most any immune hypo/hyper activity. It was initially the fear of cancer from Enbrel injections that started me on this research but because I went off of sugar and all forms of grains 30 days before the appointment date to start Enbrel injections my pain was being addressed so I dodged that bullet. Since I was at the same time watching a family member die a hard death from cancer I stayed with my intent to take the fear of cancer out of my family but fully understanding why it develops and how to prevent/reverse it at any stage. These protocols come from outside of the USA and mainly from Europe and Asia regions.
It turns out like type 2 diabetes, heart disease, stroke, Alzheimer, etc along with cancer are not actually diseases but in most cases are just the side effects of long term body inflammation caused by many different things. That is why my only WOE goal now is to eat in a way that lowers my C-Reactive Protein test levels in a systematic way.
My Pycnogenol came today also so now I have to restudy why I order it. 2 -
GaleHawkins wrote: »KnitOrMiss wrote: »rugged1529 wrote: »Hello
I was diagnosed with RA about 6 months ago. I kept getting flare ups in my knees (elbows hurt too). They started me on methotrexate which I hate because of side effects. When I discovered keto, I was doing it for weight loss but notice I was feeling better and I started reducing my medicine. Today I feel the best I've felt in months (maybe a couple years). My therapist also stated to me that my body would need to heal before losing significant weight. In any event I feel great. Weight Loss, now, seem to be a welcomed side effect.
@rugged1529 ... @GaleHawkins - since you avoided medications like this, do you have any suggestions with all your protocol studies? I know RA is a different beast than most, but I was just wondering... @anglyn1 ?
@KnitOrMiss all of the protocols that I have put myself on over the last 2.5 years were geared to revert stage 3 and 4 tumors back to all normal cells. It turns out they are good for RA and most any immune hypo/hyper activity. It was initially the fear of cancer from Enbrel injections that started me on this research but because I went off of sugar and all forms of grains 30 days before the appointment date to start Enbrel injections my pain was being addressed so I dodged that bullet. Since I was at the same time watching a family member die a hard death from cancer I stayed with my intent to take the fear of cancer out of my family but fully understanding why it develops and how to prevent/reverse it at any stage. These protocols come from outside of the USA and mainly from Europe and Asia regions.
It turns out like type 2 diabetes, heart disease, stroke, Alzheimer, etc along with cancer are not actually diseases but in most cases are just the side effects of long term body inflammation caused by many different things. That is why my only WOE goal now is to eat in a way that lowers my C-Reactive Protein test levels in a systematic way.
My Pycnogenol came today also so now I have to restudy why I order it.
Please share what you learn in your studies, save us some time!
Are all your protocols stated above that you suggest? also how long did it take for the wobenzyme to kick in? 0 -
For anyone interested, I just checked the line-up (cursory glance, mind you) of the Diabetes Summit, and Dr. Tom O'Bryan will be speaking about autoimmunity as it may relate to diabetes, but I'm betting a lot of the discussion will be a good primer on some of this.2
-
Very interesting discussion. A possible auto immune disease is what brought me to the woe to see if eliminating grains would help a strange condition I have in my feet. My Mom and sister are both celiacs, so I thought maybe I could be too without the GI symptoms. I had extensive testing by a Rheumatologist with no auto immune disease detected, but I continue with symptoms that lead my mind to auto immune diseases. The immune system is so complicated!1
-
@missippibelle - The one thing that bothered me most about that summit was the positive assertion that startlingly high percentage (25% and up, if I remember) of Hashimoto's patients alone did not test positive on antibodies. I'm sure that statistic is similar to many auto-immune conditions. My understanding is that you have to get close to the point of permanent damage/multiple conditions before these particular flags start waving like a red flag before a bullfight.
In other words, don't assume that because you don't have antibodies that you aren't auto-immune. I'd check inflammation and other markers, too, and if in doubt, find a doc willing to address symptoms, even when tests aren't black and white.
May I ask what "foot" condition you're working to eliminate? I've had some odd nerve/discomfort/random weirdness in my hands and feet in recent months, so I'd love to see if we have any factors in common. I swear, I love that my Endocrinologist is a fan of crowd-sourcing information for research/investigation factors!1 -
@baconslave - I think all of us are in at least some risk category for diabetes, or else, we'd likely not have sought out low carbing in general. Thanks for the reminder of how many issues are related!2
-
I am positive on antibodies for thyroid.., but also high ANA. I started to have similar sounding issues and ended up low on b-12. Pernicious anemia... my b-12 was low (200) but my CBC was ok. The doctor still can't figure that one out.KnitOrMiss wrote: »I've had some odd nerve/discomfort/random weirdness in my hands and feet in recent months, so I'd love to see if we have any factors in common.
0 -
missippibelle wrote: »Very interesting discussion. A possible auto immune disease is what brought me to the woe to see if eliminating grains would help a strange condition I have in my feet. My Mom and sister are both celiacs, so I thought maybe I could be too without the GI symptoms. I had extensive testing by a Rheumatologist with no auto immune disease detected, but I continue with symptoms that lead my mind to auto immune diseases. The immune system is so complicated!
I am at the point of view no one person living today understands over 1% of the human immune system. Eating to get my C-Reactive Protein to approach ZERO is all I know to try any longer after my reading of research for the past 2.5 years and earning an OD degree 31 years ago.
Every time I think others or myself are starting to figure out somethings I find "in your face" research pointing in a different direction. What is true in one person may be false in the next. Doctors that are only trusting tests that are most likely flawed at some level can give deadly advice it seems.
Had I started Enbrel injections per doctor orders Nov 2014 instead of cutting out sugar and all forms of all grains (keeping carbs at <50 grams daily) Oct 2014 and getting good pain management I hate to think what my quality of life might be today.1 -
food_lover16 wrote: »
I am positive on antibodies for thyroid.., but also high ANA. I started to have similar sounding issues and ended up low on b-12. Pernicious anemia... my b-12 was low (200) but my CBC was ok. The doctor still can't figure that one out.KnitOrMiss wrote: »I've had some odd nerve/discomfort/random weirdness in my hands and feet in recent months, so I'd love to see if we have any factors in common.
@food_lover16 - To me, that sounds like you EDITED TO ADD: ***MIGHT*** have Hashimoto's Thyroiditis - or another form of auto-immune thyroid issue. Any untreated auto-immune issue will continue to spread to the next most vulnerable system. Auto-immune issues tend to trigger a domino-like effect when untreated. Have you gotten any of your issues under control yet?
***Might, based on recent information uncovered in my own research about my own issues. I'm not a medical person of any sort, nor am I intending to give advice - more just crowd-sourcing shared research for your own leaping off points and discussions with your own medical teams.***1 -
KnitOrMiss wrote: »food_lover16 wrote: »
I am positive on antibodies for thyroid.., but also high ANA. I started to have similar sounding issues and ended up low on b-12. Pernicious anemia... my b-12 was low (200) but my CBC was ok. The doctor still can't figure that one out.KnitOrMiss wrote: »I've had some odd nerve/discomfort/random weirdness in my hands and feet in recent months, so I'd love to see if we have any factors in common.
@food_lover16 - To me, that sounds like you have Hashimoto's Thyroiditis - or another form of auto-immune thyroid issue. Any untreated auto-immune issue will continue to spread to the next most vulnerable system. Auto-immune issues tend to trigger a domino-like effect when untreated. Have you gotten any of your issues under control yet?
I find this to be true, because I started having inflammation issues in my elbows before, it spread to my other joints (knees, shoulders, and hips). I do wish I started researching sooner.1 -
rugged1529 wrote: »KnitOrMiss wrote: »food_lover16 wrote: »
I am positive on antibodies for thyroid.., but also high ANA. I started to have similar sounding issues and ended up low on b-12. Pernicious anemia... my b-12 was low (200) but my CBC was ok. The doctor still can't figure that one out.KnitOrMiss wrote: »I've had some odd nerve/discomfort/random weirdness in my hands and feet in recent months, so I'd love to see if we have any factors in common.
@food_lover16 - To me, that sounds like you have Hashimoto's Thyroiditis - or another form of auto-immune thyroid issue. Any untreated auto-immune issue will continue to spread to the next most vulnerable system. Auto-immune issues tend to trigger a domino-like effect when untreated. Have you gotten any of your issues under control yet?
I find this to be true, because I started having inflammation issues in my elbows before, it spread to my other joints (knees, shoulders, and hips). I do wish I started researching sooner.
@rugged1529 - The best thing is that you've found one of the better diets to help with reducing inflammation. While your condition may or may not be reversible completely, your symptoms can often be reduced dramatically. Avoiding the main inflammation/immune triggers of gluten/dairy/soy/sugar help. After those are eliminated (usually following a protocol of someone's out there), you can often add some things back in to see if they bother you. Most people without actual dairy allergies or sensitivities can add back in some forms of conventional dairy. Fermented soy is reasonable safe for most people, to my understanding. Gluten is almost always to be avoided long term, as is refined sugar. Most folks can heal their bodies to be able to tolerate most naturally occurring sugarsi n small amounts somewhere down the road.
There are also supplements that may or may not help reduce your inflammation, but I suggest finding a functional medicine practitioner who can run genetic tests to figure out what will most likely help, what may hurt, and what things you need to change to give yourself the best quality of life (they generally can also help you with the elimination and testing on above triggers). I think this link is the most helpful one for finding someone in your area: lowcarbdoctors.blogspot.com/2 -
@rugged1529 I agree with @KnitOrMiss. I was 63 with fast rate of failing health before finding LCHF WOE that literally started reversing my failing health within the first 30 days back in Oct 2014. I just keep learning my way forward. LCHF may never be mainstream but once I started looking outside the USA at how people were addressing major health care issues on low budgets I got really excited. Now I do not write off any protocols used by others until by research only I determine them to be of a very low risk and keep my eyes open going forward.
Moving in the right direction is the key in my case. Not everything we try is going to work for us but each year we will have more tools that do work.
Best of success.4 -
KnitOrMiss wrote: »@missippibelle - The one thing that bothered me most about that summit was the positive assertion that startlingly high percentage (25% and up, if I remember) of Hashimoto's patients alone did not test positive on antibodies. I'm sure that statistic is similar to many auto-immune conditions. My understanding is that you have to get close to the point of permanent damage/multiple conditions before these particular flags start waving like a red flag before a bullfight.
In other words, don't assume that because you don't have antibodies that you aren't auto-immune. I'd check inflammation and other markers, too, and if in doubt, find a doc willing to address symptoms, even when tests aren't black and white.
May I ask what "foot" condition you're working to eliminate? I've had some odd nerve/discomfort/random weirdness in my hands and feet in recent months, so I'd love to see if we have any factors in common. I swear, I love that my Endocrinologist is a fan of crowd-sourcing information for research/investigation factors!
Do you have any color changes with the weird feelings and discomfort? What kind of pain, buring, cold burn, shocking pains?
The diagnosis I have finally been given is primary erythromelalgia, aka "man on fire". It can be secondary to may auto immune condtions, but so far, I have no known cause. I also have Raynaud's as well. Basically, my nerves that control my blood vessels in my feet over react to heat and cold. When my core body temp goes up (or sometimes for no reason at all) my feet turn blood red, burn, become very painful and sometimes swell. It is only relieved by elevation and cooling. Raynaud's is basically the same condition, but on the opposite end of the spectrum. My feet and hands will over react to cold. Raynaud's is fairly common, erythromelalgia is not, and both is very frustrating. I have ruled out cardiovascular disease by multiple tests and 2 vascular cardiologists. Aftter an 8 month wait to see a rheumatologist, he drew 21 vials of blood and found nothing. EM can be secondary to RA, SLE, sjrogrens, and some blood disorders. I have also read that it can show up years before the actual disease does.
The pain if feel during a flare up is very much like neuropathy. I will burning, cold burn, muscle spasms, and swelling. The temp of my feet is hot to the touch (or cold dep on what is flaring up). When it first started it was a 24/7 pain and redness, but now, on some meds, I flare up mostly in the evening or when I get warm or exercise.
I take diltiazem (a calcium channel blocker)
magnesium
alpha lipoic acid (great for neuropathy)
aspirin
It is maddening to not be able to find a cause. I keep thinking auto immune. I have several members of my family with issues that are either auto immune, or have conditions that "may" be auto immune. I also had a terrible immune system as a baby, and was given IgG to boost my immunities. I also have allergies, have begun to have excema in and behind my ears, and had severe endometriosis in the past.
Mom - celiac, IBS, interstitial cystitis, thyroid issues, neuropathy (low b 12 and secondary to celiac)
sister - celiac
aunt - auto immune hepatitis
2 cousins - auto thyroid
It's a lot to explain, I know. Sorry to be so long winded. I have eliminated grains to see if maybe gluten could be some of the problem. I have read of people having neuropathy from gluten without GI symptoms. I also need to lose the 10 pounds I have gained since this all started. I lost 40 pounds years ago on weight watchers, but intense exercise has always been a part of my maintenance success. Exercise is very hard for me. I try to do it anyway, but it causes a lot of pain and flaring. I bought a recumbent bike, walk sometimes, and am working on adding yoga right now. Pressure and too much "flexing" of my feet can bring on a flare as well.
It is sooo weird! I sometimes have 1 foot hot and red, and one cold and white, and sometimes one can be half and half.
Oh and I am not diabetic either. No normal causes of neuropathy. The strange part is when I am not flaring, I have no pain at all.
2 -
@missippibelle - in answer to your question. I don't generally notice much any color changes. If anything blotchy, and "hot" to the touch from the outside, but generally only after I've attempted to "scratch" it and such.
The pain I can only describe as an itching and burning feeling deep under the skin. Running hands under cold water eases it a little, but only while hands are IN the water. Returns within seconds after water is stopped. I googled neuropathy, and really, it doesn't sound like that, at all. it's mainly the palms of my hands and the soles of my feet, and not always both at the same. Fingers and toes, also sometimes. But not the tops. scratching them doesn't help. Rubbing/wringing hands doesn't work. If my hands are laying flat, literally touching nothing but the sheet or something, with no airflow, I might be able to get it to calm down enough to ignore it. Grasping something tightly or pressing/holding anything with pressure can flare it. something going across my hand or sliding/rubbing/texture can trigger it/flare it. Like if I did something right now, it probably wouldn't do anything, as my hands haven't been an issue in over a week, I think. I've had it in my hands without my feet, but not my feet without my hands, I don't think. I haven't noticed it being worse in cold or hot weather, but I haven't been in hot weather since it started (only this year so far)... It doesn't feel like an electrical current. This is like if you went 1/8" to 1/4" under the skin and put a heating pad that created itching and discomfort flat on the the surface of my palm. It's there, but I can't get it it. I'm sorry, I really don't know how to describe it. Like a sunburn when you first get it, how it's hot and itchy, but if you scratch it hurts, but without it hurting with a scratch. Absolutely NONE of it affects the surface. It also resembles how the surface of my skin feels when I cut jalapenos without using gloves (but as I said, UNDER the skin). I've had my hands itch and burn off and on for over a week with some strong ones (even after using lime/lemon, baking soda, vinegar, degreaser, milk, everything to try to get it off - admittedly, I've always had sensitive skin - like neosporin and first aid cream can give me a rash). Really, nothing has helped except time. I have been playing supplement roulette trying to figure it out, in case of toxicity. Not related to thermogenic food effects though....as right now my face is warm, but hands are fine.
(((Previously, when extremely tired, I've gotten pain that radiated out from my bones, more my lower leg bones than anything. Doc tested me for Lupus, twice, but no indicators. It's been a while on that, too. Started to act like it was going to come a week or 2 ago, but for whatever reason, it didn't.)))
OMG, this all makes it sound so big and crazy and scary. I am not diabetic, but I do have insulin resistance, PCOS, hypothyroidism, high blood pressure (side effect of BCP, only ever had HBP once while PG, no other time until got back on BCP at 35.), etc. I've not had bad blood sugar numbers ever, really, that I know of, but I've had higher insulin numbers, and I'm still in the morbidly obese weight category (5'4", 40 Y.O., 282 pounds or so...). I have not been able to isolate it to specific conditions (food, sleep, workouts, supps, etc.). Nothing is consistent. Most likely culprit if not something autoimmune is borderline B or Selenium toxicity. I added in a thyroid combo supplement a while back because I was out of my iodine (which was one of the only things that had ever helped my thyroid symptoms, but to feel good, I had to be way over acceptable blood range)...and I wanted to try adding in a few of the other ones suggested by Maria Emmerich.
That supp had B-6, Folic Acid, B12, Iodine, Zinc, Selenium, Copper, L-Tyrosine, Guggal, and Ashwagandha. I'd been taking the Ashwa separately becaase this was really low. Because of getting back on Glucophage (metformin), I'd been trying to stick with getting extra B12 due to absorption interference. I dialed back on my other tyrosine does, kept my zinc where it was (doubled up on days I was exposed to germs/flu at work - no flares with that - plus had been taking it WAY longer). Had stopped taking my folate in October due to high test levels. Was still taking B-Complex, and a NAC with Selenium and Molybdenum - but this last one was seemingly at random. I'd dropped my vitamin C supp, because I was eating oranges and red peppers and berries and such. Stopped my l-glutamine for a while, but am back on it partially. Stopped 5-htp because was interfering with sleep. Had dialed back on my A, because I was eating more organ meats... Don't think I changed anything else. I know that is a lot...sorry... And absolutely, no guarantee that played in...AT ALL.
Will add to this if I remember anything else. Will respond separately to the rest of the message. Thanks for sharing!1 -
KnitOrMiss wrote: »rugged1529 wrote: »Hello
I was diagnosed with RA about 6 months ago. I kept getting flare ups in my knees (elbows hurt too). They started me on methotrexate which I hate because of side effects. When I discovered keto, I was doing it for weight loss but notice I was feeling better and I started reducing my medicine. Today I feel the best I've felt in months (maybe a couple years). My therapist also stated to me that my body would need to heal before losing significant weight. In any event I feel great. Weight Loss, now, seem to be a welcomed side effect.
@rugged1529 ... @GaleHawkins - since you avoided medications like this, do you have any suggestions with all your protocol studies? I know RA is a different beast than most, but I was just wondering... @anglyn1 ?
So far I'm maintaining on just plaquenil which doesn't seem to cause me any bad side effects. I take collagen in my morning coffee and I started regular strength training. This seems to have made a big difference in how my joints feel. Sometimes I feel almost completely normal now which is something I never expected to say.
3 -
lifeextension.com/magazine/2012/8/pycnogenol/page-01
I do not know how I missed this Pycnogenol for so long. Make sure and read pages 2 and 3 as well.
@KnitOrMiss I saw your request request and was wondering if I need to start a new thread perhaps.
The more I study the different conditions/side effects we deal with the more I see how similar their origins seem to be. It seems nothing goes wrong until we develop long term inflammation in our bodies. I am thinking the Leaking Gut is the point health stops going to hell in a hand basket and starts going to hell in a tri-axle dump truck.
I expect 100% of us may benefit from using Pycnogenol.0 -
GaleHawkins wrote: »lifeextension.com/magazine/2012/8/pycnogenol/page-01
I do not know how I missed this Pycnogenol for so long. Make sure and read pages 2 and 3 as well.
@KnitOrMiss I saw your request request and was wondering if I need to start a new thread perhaps.
The more I study the different conditions/side effects we deal with the more I see how similar their origins seem to be. It seems nothing goes wrong until we develop long term inflammation in our bodies. I am thinking the Leaking Gut is the point health stops going to hell in a hand basket and starts going to hell in a tri-axle dump truck.
I expect 100% of us may benefit from using Pycnogenol.
Do you have any more articles or maybe videos we can check out from reputable sources?1 -
rugged1529 wrote: »GaleHawkins wrote: »lifeextension.com/magazine/2012/8/pycnogenol/page-01
I do not know how I missed this Pycnogenol for so long. Make sure and read pages 2 and 3 as well.
@KnitOrMiss I saw your request request and was wondering if I need to start a new thread perhaps.
The more I study the different conditions/side effects we deal with the more I see how similar their origins seem to be. It seems nothing goes wrong until we develop long term inflammation in our bodies. I am thinking the Leaking Gut is the point health stops going to hell in a hand basket and starts going to hell in a tri-axle dump truck.
I expect 100% of us may benefit from using Pycnogenol.
Do you have any more articles or maybe videos we can check out from reputable sources?
Check out the 67 article sources listed on page 4 of the article link that I posted above.
My Dad died in 1993 from Congested Heart Failure. I was glad to learn Pycnogenol seems to offer hope.
Let us know what you think after checking out the references.1
