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04-25-2016, 06:20 PM   #31
Ali29
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Actually I am in my 3rd year of severe illness, became a skeleton, and yes many times I just feel so exhausted just from being sick and suffering. Absolutely, all of these things are patches and I'm tired of patching - FIND THE CAUSE!!

Some of these docs just don't listen, we have to keep pushing them or we get swept under the rug.

I hope you find some answers!
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Diagnosises - Mast Cell Activation Disorder, IBD Small Intestine-duodenum-villi blunted, Bile Acid/Fat Malabsorption, Chronic nausea-vomiting/pain, esophageal dismotility, mucosal edema, acid hypersecretion, Lymphocytic Colitis, Ocular Migraines, gallbladder removed

Current Meds: H1 H2 Anti Histamines, PPI, Enteragam, Lomotil, Phenergan, Percoset

Meds that did not work: Pentasa, Lialda, Zenpep, Entocort EC, Carafate, Elavil, Lotronex, Desipramine, Questran/Welchol severe bloating/pain.
04-25-2016, 06:33 PM   #32
durwardian
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NSAIDs, PPIs, SSRIs use all will cause your illness. Did they ever even mention that? Or that serotonin can be the cause?
04-25-2016, 06:35 PM   #33
durwardian
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Elevated Serotonin Associated With Collagenous Colitis...
http://link.springer.com/article/10....-3482-y#page-1
04-25-2016, 06:36 PM   #34
durwardian
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A significant association was observed between LL genotype of 5-HTTLPR polymorphism and microscopic colitis, suggesting that 5-HTTLPR is a potential candidate gene involved in the pathogenesis of microscopic colitis. Serotonin levels were significantly higher in microscopic colitis and ulcerative colitis patients compared to healthy controls.
04-25-2016, 06:38 PM   #35
durwardian
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Interesting finding was the marked increase of the serotonin marked cells mainly in areas with thick collageneous deposition. Since serotonin appears to be involved in the stimulation of intestinal cell physiology, such as stimulation of fibroblasts adhesions and multiplication in tissue culture, decreased cholagenase production, as well as a role in the pathogenesis of cholera, further investigation to define its role in collagenous colitis should be done . We do not have a clear picture of the distribution of serotonin because only biopsies were available for study. This point is not resolved in the literature. Since neuropeptides form a part of the brain-gut axis which may regulate gastrointestinal functions, including immune regulation, the finding of marked deviation from normal in the neuroendocrine elements studies in this case of collagen colitis deserve further evaluation.
http://www.saudijgastro.com/article....Baez-Giangreco
04-25-2016, 06:40 PM   #36
durwardian
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Deserve further evaluation, hmmm, a bunch of serotonin, and we know it causes issues, but do we try to see why it is in abundance? Do we try treating that? No, we sit around and give people sulfasalazine and aspirin, and tell them sorry you go through so much toilet paper...
04-25-2016, 06:41 PM   #37
durwardian
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I have tried to reduce it, and tried to increase the uptake so far. It does help a bit with the bathroom visits, but I can't yet put my finger on anything in particular to control it.
04-25-2016, 08:11 PM   #38
Ali29
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The GI has thrown anti depressants at me - took for short time (GI said the serotonin helps) - allergic reaction after 1 day. I was not told about everything you have stated. Don't like those types of drugs for me.
04-25-2016, 09:44 PM   #39
durwardian
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LOL, SSRI's would be exactly the wrong thing to throw at it. But that is school medicine for you. If you have a serotonin issue in the gut, that multiplies in the tissues that are damaged, it shows a problem, probably too much of the stuff staying in the gut, not necessarily a lack of it. They are usually thinking that you may be depressed and this will make you feel better. SSRI's have caused nothing but issues for me, and they don't listen. I would say, time to find a new doctor. But that is your choice. It helps to print out some of the studies and share with them. They are not as educated as you might think. And some appreciate the continued education we bring to them. Others just need to be left in the dark, they refuse to learn, and they don't listen to patient's complaints.
04-25-2016, 09:47 PM   #40
durwardian
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So what you want to try, is to get that serotonin moving out of the nerve. Not increase it. Pushing more in is adding gasoline to the fire. There are not many things that work as SSRE, or selective serotonin reuptake enhancers. One of them is Europe mainly, like https://en.wikipedia.org/wiki/Tianeptine Tianeptine has been tested and does not really increase uptake, but they don't know why it works for some people. Some think it works over the calcium channels or something. I am working on this, but I don't have any answers yet. Mainly, try not to piss it off by taking anything that would increase serotonin. Try to get the system to work. It may just be nerve uptake systems are damaged or blocked by something?
04-26-2016, 08:54 AM   #41
Ali29
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When the GI suggested the Desipramine (a TCA - like the link you shared), she asked me to look at the reviews on the Web of people with GI issues and how it somehow helped them - I agreed to take it, however I had a bad allergic reaction so never was able to determine if it helped/hurt. Not sure if I had the correct amount - I'm guessing there is a blood test to determine?

How are you attempting to lower your Seratonin levels?

Thanks.
04-26-2016, 11:32 AM   #42
durwardian
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What kind of reaction? There is no blood test for serotonin that works scientifically. Many claim there is, but they are testing waste products, not levels.
I ask about the reaction because that is probably the serotonin change. Allergy reaction can be similar, since it triggers immune response and histamine. But they are different. Have you had the CYP450 testing done?
04-26-2016, 11:56 AM   #43
Ali29
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I have not had CYP450 testing.

I developed hives, tremendous sweating day & night, itching on head/torso all within 24 hours of starting medication.

Honestly, I don't think anything that it a type of anti depressant is for me. I just want answers not patches.

Thanks!
08-31-2016, 09:27 AM   #44
kikig
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Anyone on here receiving regular Albumin infusions? I'm having an "exchange of opinions" with my gastro as to long term treatment with IV Albumin
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Diagnosis: Milroy's Disease (malabsorption due to lymphangiectasia), primary immunodeficiency (IGG), primary lymphoedema

Regular Medication: Mixed diuretics, 1000mg Calcium, 10,000i.u VitD, 125 ug L-Thyroxin, IV iron and IV albumin, lowfat high protein diet

DLBCL aka Non Hodgkins Lymphoma - 2003 (RCHOP) and 2016 (RICE plus stem cell transplant)
09-21-2016, 02:03 AM   #45
elly
 
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Yeah, found out my brother has CVID, not Crohn's. His overall WBC and CD4 and CD8 T-cells were also low.

He was (mis)diagnosed with Crohn's as a teen via a SBFT - no biopsy, scope or CT, had several serious bacterial infections (Aeromonas hydrophilia and sobria, C. difficile, etc) that were detected in his stool but went untreated d/t the Crohn's diagnosis. He had went through multiple surgeries, was put on steroids, immune suppressants, and suffers from a variety sequelae from untreated infections and also from iatrogenic illnesses, so in overall very poor health. After his first surgery (which was also his first biospy) we were told it was the "worst case" of Crohn's-colitis the doctor had ever seen.

He started refusing all Crohn's meds several years ago after he went on monoclonal ab and ended up with health going downhill rapidly yet again with several life threatening infections. He was labeled non-compliant for questioning his diagnosis and GI dismissed him as a patient. He went to several GIs - all labeled him noncompliant and when he refused IBD meds same thing so eventually had no GI. Absolute nightmare. He got diagnosed properly about 2 years ago when we took him out of state for surgery and he was recommended to see immunology for low B and T counts. He's been also unfortunately dealing with recurrent C. diff infections and parastomal hernias with infections over the past few years.

He's on Hizentra now.
09-22-2016, 06:09 AM   #46
kikig
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gosh @elly, what a crappy time your brother has had! I'm sorry to hear diagnosis has been such a battle.

I've used Hizentra in the past, and found it great as regards no stress over veins and freedom to infuse whatever time I wanted (within schedule). I discontinued after a while because there was no significant changes in my IgG levels to warrant continuing.

My GI here in Germany basically told me in my situation, throwing Immunoglobulins at me was largely pointless as my core issue is blood albumin - we now know I lose 2g of protein for every 4g I take in due to malabsorption in my gut so we changed tact.

After discussions, we have agreed a loose approach to schedule albumin infusions over a week every month or two and see how it goes.

I can see the effect of the infusions after a couple of days, and we are trying to establish how long it remains and impact on IgGs - I have vitamin and iron problems which have to rebalance as well. Trial and error
09-26-2016, 01:30 PM   #47
dejavucandace
 
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My dad had this disorder. Towards the end he received an infusion which seemed to keep him healthy. But in the end he passed away at only 53. Are you saying that there is a correlation between crohns symptoms and this gamma deficiency? I struggle with many auto immune disorders and never thought to ask about testing for that.
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