I'm back in remission (after 6 months in flare)

brandy · Post by **brandy** » Mon Oct 31, 2016 8:56 am

I'm back in remission after a 6 month flare. For the first 3-1/2 months I tried a lot of things to get into remission but in a way I was doing "half measures." I panicked about 2 weeks before I had a trip to California in August and went to protein only diet. Protein only diet got me to solid stool but it was a tough regimen to sustain. After I returned from the trip I went on cholestyramine. The cholestyramine works but I was having side effects (minor) and I saw Tex's link about possible link to alzheimers from long term use. I stopped cholestyramine after 8 weeks and immediately reverted back to WD for a couple days (as expected.)

I did the following and it kicked me into remission:

Eliminated oral magnesium and am using just epsom salt foot bath soaks (in a bucket).
Few foods regimen: I'm eating mostly protein with occasional banana, avacado, a little rice and a little potato, and also coconut oil.
I threw out my lipsticks/glosses and bought new ones from Tarte (gluten free). I tested these at Sephora at the mall.
Eliminated all supplements for awhile.
Eating nothing after dinner (no late night snacks)
Eating 4-5 smaller meals throughout the day rather than 3 large ones.

I am extremely slowly adding veggies back into my regimen. Yesterday I had 4 bites veggies. Today I will add 6 bites veggies.

Boy, it feels good to be back in remission. I had forgotten how bad it is to have WD week after week and month after month.

Brandy

dfpowell · Post by **dfpowell** » Mon Oct 31, 2016 9:25 am

Brandy,

Good to hear you are doing better!

Tex,
Could you re-post the link on cholestyramine's possible link to alzheimers?

Thanks,

brandy · Post by **brandy** » Mon Oct 31, 2016 9:37 am

Hi Donna,

I will keep cholestyramine in my MC tool box. I will have no problem bringing it along for travel if the need arises.
(I'm also high risk for alzheimers/dementia.)

Brandy

Post by **tex** » Mon Oct 31, 2016 1:12 pm

Brandy,

That was quite a challenge, so it's great to see that you finally have things under control again. This disease can really present a frustrating resistance at times, but you obviously have the dedication and creative thinking that allowed you to regain control.

Good for you, and I hope that you have smooth sailing now.

Donna,

I wish I could, but I don't recall actually posting an URL, and a search didn't find one. I suspect that what Brandy was referring to was my observation that research indicates that Alzheimer's patients tend to have relatively low fatty acid levels in their brains, and the nerve death associated with Alzheimer's and age-related dementia appears to be caused by the drying out of the myelin sheaths that normally protect nerve fibers. She may have been referring to my post in the thread at the following link:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=22736

And here are some older posts where this is mentioned:

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=21274

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=20956

http://www.perskyfarms.com/phpBB2/viewtopic.php?t=19217

For additional information, here's a link to a detailed article on this topic:

APOE-4: The Clue to Why Low Fat Diet and Statins
may Cause Alzheimer's

Or maybe I just can't remember posting a link.

Tex

dfpowell · Post by **dfpowell** » Mon Oct 31, 2016 2:49 pm

Tex,

Thanks for your response, that is reassuring to me, as cholestyramine helps me maintain a fairly normal life. My diet continues to be about 50% from fat sources so hopefully I'm getting enough protective fatty acids.
I am careful to take only the lowest effective dose of cholestryamine and monitor my cholesterol to be sure it is not going too low. So far, over this past year, I have only had a 10% drop in my cholesterol level.

Gabes-Apg · Post by **Gabes-Apg** » Mon Oct 31, 2016 2:54 pm

Congratulations Brandy!
great news you are on the other side of the flare

interesting that you had to rethink lipsticks/lipglosses...

Post by **tex** » Mon Oct 31, 2016 4:39 pm

Donna,

You're on the right track. IMO, as long as the use of a bile acid sequestrant doesn't push your cholesterol level too low, it shouldn't significantly increase the risk of Alzheimer's. There appear to be quite a few medications that may be contributing to the surge in Alzheimer's disease in recent decades. For example, I have a hunch that proton pump inhibitors may be one of the worst, because good proton pump function is vital to prevent the accumulation of the amyloid plaques in the brain associated with Alzheimer's. And PPIs have been shown in animals to cross the blood/brain barrier.

The abnormal processing of amyloid-β peptide (Aβ) and resultant formation of fibrillar Aβ (fAβ) are major events in the pathogenesis of Alzheimer disease (AD). Microglia as the phagocytic cells of the brain can engulf and digest fAβ within their acidic lysosomes. The lysosomes of AD patients are less acidic and therefore less capable of clearance of fAβ. Vacuolar proton pumps (V-ATPases) which are found abundantly in microglia and macrophages, acidify lysosomes by pumping protons into these structures. Proton pump inhibitors (PPIs) can inhibit V-ATPases of the lysosomes. These drugs are shown to penetrate the blood–brain barrier in animals. PPIs are consumed for long periods in conditions such as gastroesophageal reflux disease, with the resultant exposure of the human brain to the substantial amounts of PPIs. We hypothesize that by blocking the V-ATPases on microglial lysosomes, PPIs may basify lysosomes and hamper degradation of fAβ. Chronic consumption of PPIs may thus be a risk factor for AD.

Proton pump inhibitors: predisposers to Alzheimer disease?

You're very welcome,
Tex

Marcia K · Post by **Marcia K** » Mon Oct 31, 2016 5:14 pm

Hi, Brandy. So glad you're feeling better again! That is a long time to be in a flare. Glad you were able to figure things out.

Erica P-G · Post by **Erica P-G** » Mon Oct 31, 2016 5:22 pm

So glad to hear you beat the 6 month flare!

What types of side effects did you feel from the cholestyramine?

Patricia · Post by **Patricia** » Mon Oct 31, 2016 8:00 pm

So happy that you are finally feeling better, Brandy, and were able to figure it out! 6 months is a long time to be in a flare!! Thank you for listing the successful approach. It's so helpful!

Love, Patricia

Janie · Post by **Janie** » Tue Nov 01, 2016 11:50 am

I am so happy for you Brandy!

brandy · Post by **brandy** » Tue Nov 01, 2016 6:42 pm

Donna--it sounds like you have a good plan!

Gabes--Lilja's post about Olympian Therese whose blood tested positive to steroids from a lip balm containing steroids convinced me to make the switch to GF lip products.

Erica--side effects--Minor--were swollen throat, eustachian tube disfunction kicking in (clicking in left ear--had been dormant since I went GF), and weight loss-- 8 pounds in 8 weeks. These were minor compared to what I had on Entocort. I can't ever go on Entocort again due to side effects. I would go on cholestyramine again during short term struggles.
The eight week stint on cholestyramine was positive in that it gave me a break from the WD and eliminated the stress of the WD.

Marcia, Patricia and Janie--Thanks for the positive words.

JFR · Post by **JFR** » Wed Nov 02, 2016 3:44 am

I'm glad you figured this out Brandy. It sure takes persistence, something you seem to have. WD is just no fun.

Jean

brandy · Post by **brandy** » Fri Nov 11, 2016 12:47 pm

Hi Janie, Thanks for the positive words!

Jean, you were my inspiration and motivation. I knew you had transitioned into remission eating a lot of protein and I made myself choke down the protein. On days I was eating just protein I was getting solid stool but it was tough to sustain. Gradually I got there. I am going to fold veggies into my regimen very very slowly.

One thing I realized through the 6 months period of WD is that day after day of WD is very stressful in and of itself. I had forgotten how bad this disease really is when you are not in remission.

DebE13 · Post by **DebE13** » Sun Nov 13, 2016 7:06 pm

Whoohoo for you!!

So when you tried protien only- that was the only thing you ate? How many days before you noticed a difference?