I'm baaaack.....slightly worse for wear

[sunny]

I joined this esteemed group in 2008, desperate for information, help,& relief from symptoms....which of course, I found....along with acceptance and encouragement. I have LC plus heart failure and also had Atrial Fibrillation . My last post was in January, 2014. I think I disappeared due to my ongoing heart struggles and problems with arrogant cardiologists.
There are 4 cardiology groups in our town and I had extreme stress with 2 of them ( misdiagnosis, ignoring phone calls for help and then the 3rd doc walked out on me during our visit.sigh....So....out of the frying pan into the fire...the 4 th doc said my heart was too fragile , too damaged to do an ablation and said he was sorry he couldn't help me. Well, color me STRESSED!
I found my way to an amazing doctor in San Francisco who just laughed at that diagnosis and told me he helped people with more damaged hearts than mine! I had a successful ablation, the arythmia was stopped and since I needed follow up care, back I went to Dr. L. Who was furious that I had gone to someone else and was standing over me shouting and enraged...then he rushed out to rage at my heart failure specialist. The scheduler came in to see if I was ok....5-7 folks in the lobby heard him...staff was in shock....I was numb....they hurried me into my cardiologists office...and I asked him why they kept Dr. L there when he was so angry...."He brings in a lot of money to our group." Seriously? "Besides, it's your word against him!" I told him that the staff heard him and also several patients in the lobby .
My anxiety was though the roof...I felt panicked ...desperate to get away....I began to exhibit PTSD symptoms....I was terrified that if I had a heart emergency who would come to the hospital? And would he help or ignore me?
We ended up moving to the Portland area where I had found a Cardiologist who understood heart problems related to childhood trauma since his wife was a therapist ( as I was pre- retirement ) I saw his PA who helped me trust doctors again and my life settled down .i also had found a Natruopath who helped me repair my damaged gut ( from gluten, LC, and 2 bouts of Cdiff. )I was doing so well....
Then the Naturopath suggested I switch to a plant based diet and convinced me that Paleo and AIP was harming me....I trusted him so much...
In Sept. Of 2015 I began having shoulder problems.....then elbows, wrist problems....then the diarrhea came back in earnest. Soon I was in such pain I couldn't lift my tea mug, let alone the tea kettle or coffee pot. I couldn't lift my arms to wash my hair. I couldn't lift the blankets to turn over ....By this time I had switched back to AIP....I believed that these health problems were due to the plant based diet.
Went to PCP...labs led him to diagnose Polymyalgia Rheumatica (PMR) ...I dint want to take prednisone so I took LDN .... After a month I had no pain....labs dropped dramatically. Doc refused to believe that LDN would do that so it must have been a misdiagnosis....sigh...
We were in a new Retirment Residence that had GF menus but I kept getting glutened and it would take me 2-4 weeks to recover.
In April of this year, I lost the vision temporarily in my left eye while at my daughters on vacation and my Opthalmologist said it could wait till I came home. During my appointment she was in a panic that I had Giant Cell Arteritis which often accompanies PMR. I could lose my eye sight permanently...so she ordered a biopsy of the artery along side my hairline just above the ear, started me on 60 mg Prednisone , and ordered blood tests to measure inflammation. Prednisone tore up my tummy and my gut so she had me drop to 40 mg and spread through the day..I found a great support group who helped me on the taper....biopsy proved negative but surgeon said it doesn't mean I don't have it...just that he didn't find it...more stress....
After the taper, the diarrhea just stopped...amazing! For 3 weeks I had trophies ( Normans) every day! And then.....all hell broke out with severe stomach cramps around midnight every night that was like being in labor plus severe diarrhea...Cdiff tests were negative. It never occurred to me it might be LC ....these symptoms were so much worse!
You can see the stress I've had the past 2 years...we ended up moving back to our old area as our daughter moved just a few blocks from the Retrierment Residence we had left and my Portland cardiologist got married, then pregnant, & plans to stay home for a few years ....
The PCP I had gone to for 4 years is working on Functional Medicine certification and has moved to a medical group just 15 minutes from us. She is willing to help me and has been open to info from this group and was willing to prescribe Budesonide for me till she researched it and learned it can interact with the Elequis I take and thin my blood to the point of mini bleeds in my gut...so we are trying the Pepto Bismol protocol and it is beginning to make a dent in the amount of watery diarrhea....I was having 3-4 bouts of WD every night around 10 pm until 2 or 3 am....and smaller loose stools in the daytime.
She wants me to have a stool test to show level of inflammation.Meanwhile, I have gone back to early stage of AIP ...I've been GF of course since 2008, plus no soy.
So sorry, I just realized I've written a book! I guess I thought I had to fill you in on why I'm is such a desperate state of affairs. And I've left so much out, I hope it all makes sense!

[Martha]

Oh, Sunny, I'm so sorry you've gone through so much bad stuff. I'm beyond speechless at how the doctors have treated you.

If we could all give you big hugs and make it all better, you know we'd do that, right?

Love,
Martha

[tex]

Hello Sunny,

Wow! You've really been through the mill. That's quite a story, to say the least. The doctor who flew into a rage is obviously in the wrong profession. But he would probably have a lot of trouble keeping a job in some other line of work, because most employers and associates wouldn't tolerate that kind of BS.

EnteroLab now offers an additional test for 11 other antigenic foods (beef, pork, chicken, tuna, almond, walnut, cashew, rice, corn, oats, and white potato). That test might be helpful for you. There is also the possibility that the Elequis might be the problem. Diarrhea is listed as a possible side effect. I have been taking Plavix for over 6 years now, with no problems so far (but of course I'm not taking budesonide, either).

I hate to second guess your doctor, but I can't find any listed interaction between Elequis and budesonide. I believe she made a mistake. Neither budesonide nor Entocort are listed, but there is a listing for Entercote, which is a type of aspirin. My guess is she misread or misinterpreted that listing. As far as I can tell, there is no reason why you could not be using budesonide. Budesonide causes skin thinning, but I can't find any medical reference suggesting that it might cause blood thinning.

https://www.drugs.com/drug-interactions ... iquis.html

I hope that you will be able to resolve your symptoms soon.

Tex

[sunny]

Martha...thanx for those big hugs!!! They gave me a big smile and warmed my heart.
And yes, I do think if we were gathered in person I would get all those hugs...
When I wrote out my history and saw the patterns of abuse of power all listed together I could see why I was so overwhelmed and stressed....I'm much stronger now....
Thanx again for the warm welcome.....

[sunny]

I appreciate your comments....I have done OK with Elequis in the near past, but of course things can change especially with a more damaged gut. I take a half dose of the 5 mg so at least it is a smaller dose...but certainly something to consider. Ive seen quite a few ads from attorney groups ..." If you or a loved one has taken Plavix...."
I couldn't find any connections between Elequis and Budesonide either. So maybe she is mistaken....
I had 24 episodes of loose stools yesterday...sometimes only a tablespoon , other times much larger amounts. Included in that was 6 episodes of severe cramps & watery diarrhea...the pepto doesn't seem to be working, or am I expecting too much too soon? Plus I even added lomotil and Immodium. It was a tough day.

I'm thinking of asking my doc for a trial prescription of Budesonide for 2 weeks & see how I tolerate it...I've read the list of side effects and have some concerns. Would I experience any relief in just 2 weeks on Budesonide ?
I've seen the link to getting this med from India through Canada....makes me nervous but so many on the board seem to do fine with that so keeping that in the back of my mind.

When I had my Enterolab test, those antigenic foods were included and seems like I scored on most. Cant remember my score on rice so I'm going to dig out my results....I think they are on the data base here.

[Blueberry]

Sorry to read about the continuing health problems and stress created by some doctors.

I had a strange yelling incident with a doctor once. She made a big scene in the cardiac waiting area, near a nursing station. I wasn't the patient but my grandfather was. He had been rushed to the hospital due to heart issues it was feared. I sat in the waiting room for hours looking forward to seeing him. Eventually a nurse came out to tell me my grandfather's testing was done in that area. He was to be wheeled out to the elevator soon. The nurse then pointed to the elevator and said I should wait for my grandfather to be wheeled out and I can go with him to another floor where he would have further testing done. I did as asked by the nurse. Not long after that, a doctor quickly walked over to me, came a few inches from face, and began to scream at the top of her lungs. I'm not sure what she wanted of me to be honest. Maybe she had a purpose but none that I could tell. She was looney, maybe on narcotics I suspect. Thankfully another doctor came running over. He threw his arms about the yelling doctor, telling her it was Ok and dragged her away. I was shocked to the least. And right on schedule granddad was wheeled out for the elevator ride. Strangely all the nurses with me and granddad on the elevator ride were smiling, and didn't say a thing about the yelling incident.

Hope you see fewer yelling doctors in the future, and with that have less stress.

[tex]

the pepto doesn't seem to be working, or am I expecting too much too soon?

How much are you taking? The treatment recommended by Dr. Fine was 8 tablets per day. Average time to remission in official trials was approximately 2 weeks.

Would I experience any relief in just 2 weeks on Budesonide ?

If it's going to be effective, most patients see significant benefits in 2 weeks or less. A few see benefits within 1 or 2 days.

When I had my Enterolab test, those antigenic foods were included and seems like I scored on most. Cant remember my score on rice so I'm going to dig out my results....I think they are on the data base here.

Your posted results do not include those additional foods. That's why I assumed that you may not have had that test.

Tex

[sunny]

I'm taking 3 Pepto 3 times a day..... I was doing 2 X 4 but it was hard to get up in the middle of the night to take a dose when I miss so much sleep with episodes of WD. Your response that it takes about 2 weeks helped. It's been 8 days and there are indications that at least the patterns are changing.

As far as the Budesonide helping in 2 days to 2 weeks ..... that brings hope for plan B if Pepto doesn't do it.

My second Entero test was in 2013 and I posted the results on Saturday Dec. 7 2013 ...subject was "Entero-sized". I spent several days trying to find my hard copy to no avail and so then read through all my posts over the years till I found it. I'm glad I did because I had forgotten all about my disheartening results showing how many foods were problematic for me....without interacting with the group it just " slipped my mind as if it wasn't really problematic for me. Yikes! Not a good thing at all! Tuna was top of the protein list followed by chicken....duh! And I'm eating chicken all the time plus having chicken broth daily....sigh...feeling like I'm too soon old and too late smart!!! So switching to turkey as soon as I can find a good source with no injected flavorings.

As usual....thanx!
Sunny

[tex]

Sunny,

I couldn't find it using the subject you listed. So I did a wildcard search and found that the actual subject name was "Entero-ized!".

I added your second test results to the combined listing so that you can find them more easily next time.

For reference, here are your complete results:

Fecal Antigliadin IgA 24 (Normal Range 10 Units)
Fecal Antitissue Transglutaminase IgA 16 Units (Normal Range 10 Units)
Quantitative Microscopic Fecal Fat Score 300 Units (Normal Range 300 Units)
Fecal anti-casein (cow's milk) IgA antibody 18 Units (Normal Range 10 Units)
Fecal Anti-ovalbumin (chicken egg) IgA 31 Units (Normal Range 10 Units)
Fecal Anti-saccharomyces cerevisiae (dietary yeast) IgA 54 Units (Normal Range 10 Units)

HLA-DQB1 Molecular analysis, Allele 1 0302
HLA-DQB1 Molecular analysis, Allele 2 0602
Serologic equivalent: HLA-DQ 3,1 (Subtype 8,6)

Mean Value 11 Antigenic Foods 42 Units

Food to which there was no significant immunological reactivity: None
Food to which there was some immunological reactivity (1+): None
Food to which there was moderate immunological reactivity (2+): Corn, Rice, Chicken, Beef, Pork, Almond, Cashew, Walnut, White potato
Food to which there was significant and/or the most immunological reactivity (3+): Oats, Tuna

Yes, if you tune up your diet to avoid those foods that should allow you to get the inflammation under control, and that will help a lot of things, including your heart.

You're very welcome, and thank you for locating that post, because it obviously contained some very helpful information.

Tex

[sunny]

So sorry for leading you astray! Entero-Sized is a Freudian slip I think... my daughter had just brought an old picture of me from 2006 when I weighed #250... ( I now weigh 143) and my first thought was that I was "super-sized" back then. Lol! Gosh...I lost almost 1/2 of me....

[sunny]

Forgot to say thanks for this summary! It is so helpful to understand what I'm up against in finding food I can eat . The format just made it immediately clear what to avoid and what to look for. I've been reading every day on the site and read all the ideas every one gave to Rachel when she had such tough results too. So I took notes and will investigate finding sources for elk and deer that was posted.
So mucho gracias!

[tex]

De nada. You're probably right about the photo affecting your choice of words. I catch myself doing that sometimes, and there's no telling how often I do it and don't catch it.

Tex