Thanks so much Annie. I've had such a difficult time getting it all pieced together despite going to "the best" hospitals in the country.

I am + for the parietal cell and have weekly B12 IMs. And, yes, I have GI problems every which way. They define my life yet prior to cdiff/toxic mega colon I was the healthiest person EVER. No neuro, no rheum and certainly no GI issues.

They did follow the traditional SMA trail and all subsequent liver testing looked fine. And as far as RA they say, "RF quant is pos in a lot of AI disease and doesn't tell us anything". And my C4 continues to plummet (it seems to correlate w how bad my sx are) but the dr just says, "that doesn't mean anything".

I'm having such a hard time as I've basically forfeited my life. I have my masters from an ivy league sch, had a great job, loved my life etc and now I'm just home sick - on some days I barely function at all. To not have answers on top of feeling so sick or have a lack of cohesion w the different positive antibodies is nearly breaking my spirit.

I feel as though I fall into the "complicated case" pile and it is much easier to deal with the easier patients. I think the only thing we can all agree on is that my gut flora has irrevocably changed and that it wreaking havoc on my immune sys.

Sorry for the pity party. I'm so desperate for my life back and feel like Im getting no real answers.

I appreciate ur insight.

I'm sorry if I can't remember this, but have you been tested for celiac disease?

Anyone with pernicious anemia does not have stomach acid. You NEED it! I don't have it either and haven't for decades. I don't have PA (I think), because the antibodies weren't positive. It hardly matters, I ended up with a B12 deficiency anyway.

I take Bluebonnet Betaine HCL. It's the one brand that has had consistent quality. I get mine at www.iherb.com

I've taken Betaine HCL since 1999 with no problems. Quite the opposite. I've had no GI problems since then! And I've had a colonoscopy which was completely normal.

Why don't doctors tell their PA patients about the lack of stomach acid?!!!

I take capsules, because, obviously, I don't have the stomach acid to break down tablets. It's the 650mg. capsules. With a small snack or meal, I take one to two. With dinner, I take two. But everyone is different. You could try taking one with lunch, for example, and see how you do. Make sure you tell your primary doctor what you're doing.

The gel coating of your stomach might not be great, although it could be fine. Do you eat fish? Walnuts? Good prostaglandins like fish, flax, krill oil, walnuts, etc. help to keep that gel coating healthy.

Since your stomach is basically being attacked by antibodies, you really need to focus on keeping it healthy. The GI tract health is essential for overall health.

Without enough stomach acid, your food can't digest and nutrients can't be absorbed as well. Undigested food can sit in your GI tract and, well, rot. You can have an increased risk of infection, allergies, inflammation, and cancer. It can lead to a leaky gut, and might lead to more AIs. And you probably feel like crap.

When a doctor says that you're a "complicated" case, it simply means that they don't have the time, inclination, or brain power to figure it out!!! Have you tried to see an immunologist?

I have a masters degree, too. I know how frustrating it is to watch your life crumble. That's why it's so important to figure out how to create a new life. To reinvent it. It might take some time, but you can do it!

Letting go of things you love to do is beyond hard. I can't take road trips, which I love to do. And there are so many other things I've had to let go of. But I focus on what I CAN do, and enjoy life as much as possible.

There are still days when I have a meltdown, and cannot handle that this is my life. It's not a "pity party!" Life can simply be overwhelming when you're sick. No need to add to it by beating yourself up by having NORMAL emotions!

If you can focus on doing as much for yourself that is healthy (i.e., getting enough sleep, eating good food), it can help to calm down the immune system. Meditation really helps, too. We are all basically "energy chambers" and increasing the good/happy energy really helps. Just think about how good you feel when someone says something nice to you, or does something to contribute to your day. You feel great, right?

It doesn't matter how many people are in NY. There must be some doctors there who can help to make your life better, by paying attention to what you're saying, running the right tests, and THINKING!

You might want to write down all of your symptoms. Try to put them in categories. For example, put the sensory symptoms in one list. Sometimes it helps doctors to see things in black and white.

Hang in there! And don't overdo things right now. I know that it's spring, and that desire to golf is strong. But you might need to put a few things on hold until you get all of this figured out. Not permanently, but if your health issues aren't fully mapped out, they will continue to be a problem.

I hope you can find a few doctors to help you!

Annie

I cant thank you enuf, Annie. It means the world to have someone who gets where I am.

I do, in fact, have celiac. Another offshoot from the initial cdiff extravaganza. And while there is no real commercial test for leaky gut we all know I have it. I know some labs can look at zonulin etc - I am seeing the leaky gut guru in May:
Alessio Fasano M.D. at MGH and in all my research he one of the few in mainstream medicine that I can find making the connection bw gut permeability/AI disease. I am hoping he is an outside the box thinker in terms of getting my gut under control but also want to be realistic that there is no magic pill/diet.

I do use HCL but thank u so much for the reminder!

I actually had a stool xfer and ALL of my neuro problems improved almost over night. Sounds far fetched for many folks but I can not even begin to describe the difference. It was night/day but, sadly, not lasting. Such a pump fake bc for a hot minute I thought I was cured.

I do have refractory SIBO and post xfer it was the only thing that eradicated the hydrogen/methane producing buggers. Not even rifaxamin or any other abx combo would do it. Doesn't surprise me as it is the most "potent probiotic" out there but as I said results didnt last

Thank you for your words of wisdom. I am usually quite good as focusing on the positive and what I still can do but as a result of long term pred I am having severe feet issues (they are looking at AVN and other issues) so I have zero mobility at the moment. It is making me crazy beyond but I will break out my paints and do a lil art therapy! I know feeling sorry for myself isn't the answer but I appreciate you reminding me to go easy on myself. It is all such an adjustment!

Thx again for everything.

I had the irritable gut and have practically recovered from it by taking a suggestion by a fellow Lems patient of eating/drinking home made kefir. It restores the gut flora much better than yogurt and is easy and inexpensive to make.