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02-17-2014, 07:27 PM   #1
durwardian
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Immune Globulin Deficient Support Group

About this Support Group

Welcome to the immune deficiency support group. I searched and only found the medicine portion, but not what I was hoping for.

After 10 years of taking medicines and being treated for Crohn's, multiple surgeries, and suffering, I caught a nasty cold. I was suddenly free of my symptoms and wondered what this could be. I got in touch with an immunologist, we tested my IgG and IgA, and discovered I was depleted. Which could have been circumstance, or inborn. Regardless, what happened after that was amazing. He set me up with globulin replacement therapy, and i was in total remission, no more issues. After 6 months of therapy, my immune system looked stable, so we stopped the therapy, it is very expensive. Within 1 year it is back to a level where I am suffering all the symptoms of Crohn's again. I am about to return to the therapy.

How many of you are actually suffering from a collapsed immune system, and not the pseudo-Crohn's like me? How many are taking immune suppressant drugs and not being monitored to see if the immune system is still working properly first?

What questions do you have?

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02-17-2014, 09:41 PM   #2
durwardian
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http://www.info4pi.org/aboutPI/index...PI&content=faq
02-18-2014, 04:28 AM   #3
Malgrave
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My son may have some sort or primary immune deficiency, most probably common variable immune deficiency which is causing his Crohn's like disease. His IgG and IgA are high so instead of hypogammaglobulinemia he has hypergammaglobulinemia, but still his immunologist thinks he has a problem in his antibodies production. His B cells are low.

Last year we started IVIG which took the symptoms away for 3-4 months but gradually the problems came back. He is still on IVIG and I think he is benefiting it a lot: except his gastroproblems he is very healthy.

I think that a better name for the group would be Immunodeficient persons' support group or something like that... part of the PID persons don't have immunoglobulines deficiencies, some are treated with antibiotics, etc.
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*Son (9 years) with severe Crohn's diagnosed at the age of 26 months, currently UC or Crohn's colitis
*Current mediacation: IVIG, Humira, Azathpriorine, Eusaprim
(Tested but failed: Modulen IBD, Neocate advance, Budenofalk, Remicade, Azathpriorine, MTX, Jerusalem cocktail, cycklosporine, pentasa,...)
02-18-2014, 04:39 AM   #4
Malgrave
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This is an old thread about the connection between IBD and PIDs:

http://www.crohnsforum.com/showthread.php?t=43355
02-18-2014, 04:40 PM   #5
rob101
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I was diagnosed with hypogammaglobulinemia with low IGG and undectable IGA / IGM. My IGG levels restored themselves after I had a bowel resection and my Crohns went into remission .The IGA and IGM stayed undectable and I see the immunologist every 6 months.
02-18-2014, 05:00 PM   #6
durwardian
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I was diagnosed with hypogammaglobulinemia with low IGG and undectable IGA / IGM. My IGG levels restored themselves after I had a bowel resection and my Crohns went into remission .The IGA and IGM stayed undectable and I see the immunologist every 6 months.
What kind of treatment are you getting? Frequency? Do you know what it costs? Curious, mine jumped from $3,000 to $8,000 / weekly. I think it outrageous...
02-18-2014, 05:03 PM   #7
durwardian
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My son may have some sort or primary immune deficiency, most probably common variable immune deficiency which is causing his Crohn's like disease. His IgG and IgA are high so instead of hypogammaglobulinemia he has hypergammaglobulinemia, but still his immunologist thinks he has a problem in his antibodies production. His B cells are low.

Last year we started IVIG which took the symptoms away for 3-4 months but gradually the problems came back. He is still on IVIG and I think he is benefiting it a lot: except his gastroproblems he is very healthy.

I think that a better name for the group would be Immunodeficient persons' support group or something like that... part of the PID persons don't have immunoglobulines deficiencies, some are treated with antibiotics, etc.
Interesting that the symptoms show up in both directions, too high and too low?
02-18-2014, 05:05 PM   #8
durwardian
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I will look to see about names. Maybe David can help until we figure it out.
02-18-2014, 05:06 PM   #9
durwardian
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Was anyone offered support or the use program by Hizentra or other brands?
02-18-2014, 05:55 PM   #10
rob101
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I am on no treatment at the moment the immunology dept are just keeping a close eye on me. Luckily I havent needed any as I havent had mant infections other than the odd cold .(Hope thats not the kiss of death)
02-18-2014, 05:58 PM   #11
durwardian
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It is dangerous to risk not trying to bring it back online.
02-18-2014, 06:12 PM   #12
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I think I am a bit of anomaly by not getting the chest/sinus infections etc .So they dont seem that concerned at the hospital. At the moment I am awaiting the results of a ALPS test,which thankfully they are pretty sure I dont have it but are crossing off all possibilities.
02-18-2014, 06:15 PM   #13
durwardian
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I think I am a bit of anomaly by not getting the chest/sinus infections etc .So they dont seem that concerned at the hospital. At the moment I am awaiting the results of a ALPS test,which thankfully they are pretty sure I dont have it but are crossing off all possibilities.
Yes, I've had pneumonia 3 times, each time worse. Sinus i fixed with regular salt rinses. Cross my fingers on the ALPS for ya
02-18-2014, 06:26 PM   #14
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Sounds really awful the Pneumonia!. I have used the salt rinses too they are very effective for clearing out the sinus's and are a natural solution too.
02-19-2014, 11:26 AM   #15
durwardian
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Has anyone tried the sketchy online treatments? If so, which ones, and how did that go?

Here's one that doesn't even actually say anything about what it is made of, except a mention of ALOE plants on the web page.

Each capsule of DigestaCure contains 500mg of pure, concentrated immune modulating agents.

INGREDIENTS
A proprietary blend of:
Main ingredient: Stabilized long-chain polymannan and polysaccharide molecules
stabilized mannose molecules
stabilized glucomannans
stabilized glucopolymannans
stabilized medium and short chain polysaccharides
stabilized mucopolysaccharides
stabilized glycoproteins
stabilized glycolipids
Contains trace amounts of;
natural beta sitosterol
natural plant minerals
natural plant enzymes
natural plant amino acids
02-19-2014, 02:36 PM   #16
Malgrave
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My son was on Hizentra for about 2 months, then we stopped the IG treatments completely because the doctors were not able to find out any known PID. During Hizentra and especially after stopping the treatments his symptoms gradually came back. After a while the immunologist recommended IVIG again because of the previous positive results, and especially IVIG since it gives such a burst of immunoglobulines and it seemed to activate my son's immunity better than weekly injections.

Otherwise using Hizentra was very easy and took only around 1 hour per week.
02-19-2014, 03:58 PM   #17
durwardian
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Hurrah! My treatment with plasma has been approved. Recovery and remission are in sight.
05-13-2014, 11:19 AM   #18
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Hi, everyone! I have Crohn's and was also diagnosed with hypogammaglobulinemia. I did subcutaneous IG infusions weekly for a month last year, but it aggravated my Crohn's so severely that I had to discontinue them. I also started Humira after two IG infusions. Has anyone else been unable to treat their immunodeficiency because of it causing problems with Crohn's?
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Conditions: gastroduodenal Crohn's disease; chronic SIBO; bile reflux; gastroparesis; intestinal dysmotility; hiatal hernia; hypogammaglobulinemia; IBS; chronic migraine; fibromyalgia; sensory processing sensitivity; Raynaud's; congenital cataracts
Current treatments: Humira biweekly, Azathioprine 50 mg once daily, Xifaxan 550 mg daily on alternating weeks, Omeprazole 20 mg, Cymbalta (for pain), VSL#3 Probiotic, Iberogast, Remeron, Zofran; permanent TPN
11-21-2014, 03:19 PM   #19
durwardian
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Hi #Stardust_Fiddle,

Have you been checked for genetic mutations? There is a MAPP test going around by Millennium PGT that can check to see if you can't produce certain enzymes.

Usually, the coating or lining of the intestines is afflicted and gets inflammed when the IgA and IgG levels drop, and sometimes if they are too high. Also, since the immune system is worn out, the Innate immune system will sometimes step in. If that happens, it just attacks the afflicted area with a vengence and destroys everything. It is trying to combat something, or protect the body. When this is caused by an unknown, like in the case with Crohn's, it is often a missing or damaged cycle in the enzyme or protein level. Some people can't process folic acid, so they are missing the folate cycle. Without that, they have a tendency to inflammation, and many other problems like anemia, mouth or digestive tract sores, etc.
Since most foods contain things that you cannot process, all of them become a possible source for issues. Medicines are in the same boat. Learning to live wih a deficiency is a hard path. Sometimes there is no cure and you have to supplement or be on a constant watch. Sometimes removing the infection allows the body enough of a respite to rebuild the broken down systems. Sometimes an antibiotic is enough.
So finding the cause is important. Being dismissed with a diagnosis that is difficult to treat is negligence in my book. Most specialists are in the boat with insurances. They only get a certain amount of time and testing, and then you are finished. The results are what they are, and if they haven't found a solution, then you are dismissed. It should be a crime.
In any case, my theory is that many people either have an invader, or something has gone wrong in the cycle processing. The successful cures in Europe and Australia were by using the approach that it is an invader. By bombarding it with multiple antibiotics, they killed it and the body recovered. The successful treatment for cycle errors like genetic mutation, are watching the diet very closely in combination with replacing as much of the missing components as possible, and hoping that is enough to set the body back to a healthy state. Examples of this are the COMT and MTHFKR mutations. If you have it, you man not be able to process folic acid into the proper components to supply Vitamin B9 and B12. When those are missing you have major issues that have all kinds of similar symptoms, and can cause all kinds of physical problems. To fix this, you would need to supply the body with Methylfolate versions that do not need to be remanufactured into what the body uses. You may also have a build-up of folic acid waste in your body, making you quite toxic. With some mutations, you can't rid yourself of the waste products, making your blood toxic again.
It is a simple test, a swab in your mouth. Takes a few weeks to see what mutations you may have. Once known, it is a matter of seeing what works, and in what quantities.
What will always help is to detox the waste, keep the circulation up, watch what you eat and drink, watch the medications. If you notice problems, keep a journal of the time and date, what was consumed, and how long it lasted. Sometimes watching in morph into something else.
Also, when the damage to organs and tissues is done, it may be that it can't be fixed. Such is the case with kidney damage, bone damage, nerves, and so on. So catching all of this as early as possible is also key. The watch and wait attitude of doctors and insurances is causing more damage and mayhem than it is any good. All to make a profit. Squeeky wheels get greased, so raise some questions, ask and ask and ask. Sometimes a doctor will think about it and agree that it is worth a try.
The Millenium PGT test was free for me. And it has opened up a brand new diagnosis for me. They are finally willing to toss the misdiagnosis of Crohn's out the window, and call it what it is, a genetic mutation that leaves me unable to process many drugs and foods. Some of them can make me very sick in a sneaky way. It can takes days for me to become ill from something. So the connection is very difficult without knowing that I don't have the ability to process folic acid, and that many medications will not leave my body in the usual amount of time. I get poisoned slowly by the drugs they try to give me, and the food and drink that is supposed to keep me healthy. The answer is knowledge. I can avoid certain things now, and I know what is happening when my body falls apart. Blocking the whole process like some of these drugs are doing is not the answer. Looking at why the body is producing the toxins in the first place is the first step to proper treatment and possible cures.
Don't let your doctors dismiss you with a Crohn's verdict. That is giving up without finding any answers. If the medicines give you a break, enjoy it. But read the labels carefully, that is also poison.
I would like to believe that we are on the path to a cure through genetic modification. There has already been great success with sickel cell anemia. Hopefully this type of research will continue.
I hope this helps and that many of you will check into the MAPP testing. It is a real eye opener.
11-21-2014, 07:08 PM   #20
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I'm IgA deficient which was diagnosed a few years ago when testing for Celiac disease, negative phew!, and have Crohn's.

As far as I'm aware I have no symptoms although I had a chronic cold as child which may have had something to do with it.

Is there anything I should watch out for?
12-07-2014, 07:24 PM   #21
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I have IGG deficiency, IGG subclass deficiencies , and IGA deficiency. Had the Pneumovax vaccine antibodies test three times all with the same results. Produce no antibodies

My question for the forum is do you feel your immunoglobulin deficiency contributes to your Crohns symptoms? Right now I am not considering IVIG because I am controlling my infections with antibiotics. However I might reconsider if my Crohns symptoms do not get under control.
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12-07-2014, 09:22 PM   #22
durwardian
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It is a fact that it complicates and causes issues with every disease, and you can have both. Probably you may be a Common Variable Immune Disease like me. Fixing my immune issues with IG therapy makes me symptom free in the Crohn's department.
03-03-2015, 06:33 AM   #23
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Not sure if anyone else here has the same but principally, I have Protein Losing Enteropathy which has, amongst other things, the wonderful offshoot of hypogammaglobulinaemia. My IgA and IgM levels are only slightly impacted, but I have absolutely no allergies which is cool.
Therefore, getting my gastro problems under better management will have a positive impact on my immune system, but there is no "fix" - at least according to my GI specialist

Last edited by kikig; 03-03-2015 at 08:50 AM.
03-03-2015, 11:18 AM   #24
Stardust_Fiddle
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Not sure if anyone else here has the same but principally, I have Protein Losing Enteropathy which has, amongst other things, the wonderful offshoot of hypogammaglobulinaemia. My IgA and IgM levels are only slightly impacted, but I have absolutely no allergies which is cool.
Therefore, getting my gastro problems under better management will have a positive impact on my immune system, but there is no "fix" - at least according to my GI specialist
I have hypogammaglobulinemia as well. You're the first person I've noticed who also has it! I have numerous other health problems but not enteropathy, and nobody really knows why I have an immunodeficiency.
04-25-2016, 01:48 PM   #25
Ali29
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This has been really eye opening researching this. I believe I have defective genes.

Which would you suggest I see an Immunologist or Geneticist?

Thank you.
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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, 02:08 PM   #26
durwardian
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This has been really eye opening researching this. I believe I have defective genes.

Which would you suggest I see an Immunologist or Geneticist?

Thank you.
Both at times... immunologist should be checking for recurring infections and your Ig levels, the physical symptoms and possible treatment.

My visit to a geneticist was rather disappointing. They are not really that great, and came up with a single testing for a group of genes only related to the IgG symptoms, nothing else, so not comprehensive enough to be even close to diagnostics. It came back with 1/2 a genetic marker, so not enough to be a full-blown genetic issue with IgG, or common variable immune deficiency. Which is not surprising, since the studies are still in progress, and the genetics play together like an orchestra. But did they look for all possible problems, no. It would be too much work.
I did more on my own, with my own research, and figuring out what I do and don't have symptoms of. Then I started to load my body to test the results, and got a few of them out of the way that are obviously not active mutations.
What I ended up with was surprsing, and I'm in the process of checking it. There is a serotonin overload connected with a genetic inability to degrade it. And when body levels of serotonin are too high, they cause osteoporosis, IBS and Crohn's/Colitis symptoms, muscle stiffness and pain, and the rage and anger issues that are not normal frustration. So now I look and find out that medications like Tramadol block uptake, which makes the problems worse. I brought that to my doctor, and he said I was talking over his head, so I tried the infectious disease doctor, and he said I was talking over his head. I tried rheumatology, same thing. Only the immunologist/allergist knew what I was talking about, and agreed that it is very difficult to balance something like that. Basically, you start with medications, diet, and a log book. You keep track of things the best you can. SSRI's and other modification things that would block uptake are to be avoided, you also don't want to deplete the supply of neurotransmitters. You want to restore the natural flow. So enough of it, in the nerve synapse for the right amount of time, then degrade it. If that balance is off, you will have constant bowel issues, bone problems, mouth sores, muscle pain, etc.
04-25-2016, 04:16 PM   #27
Ali29
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Wow, this looks like a difficult journey durwardian. I guess I should start with the Immunologist - sounds like you have to be a Detective!
04-25-2016, 04:23 PM   #28
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Don't even get me started on all the possible invasions of bacteria, worms, nematodes, viral leftovers, or other possible causes...

The problem with diagnosis is when to stop, or how to interpret. After years of messing around with the wrong specialists, my immunologist actually sat down with all the records and test results and agreed with me that my titers and immune response is fine. That is not the problem.

So, where to go from there... geez
04-25-2016, 05:06 PM   #29
Ali29
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The reason I started researching this was that my GI - prescribed a week long trial of Enteragam and it was beginning to help with the constant dashes to the bathroom. I was able to get a prescription through the makers of Enteragam for $49/mo (my insurance doesn't cover this one yet). Since Enteragam is a Immunoglobulin - it made me think there is more to this illness, (they have yet to fully diagnose everything going on with me).

I appreciate your help - you certainly are very knowledgable in this area!!
04-25-2016, 05:51 PM   #30
durwardian
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The nerves that control reactions in the bowels, are mainly serotonin. So any SSRI, any tramadol, other large suppliers of serotonin building materials, can be causing an overload, but your body should then compensate. When it fails to do that, it can be disease, or nutrition, or genetic. So reactions to medications become paramount because they can help to describe what is going on in the body. Sometimes it is a liver enzyme function, sometimes toxins, sometimes bugs, sometimes bad genes. Enteragam is a bovine IG, called a food supplement. Sometimes the constant irritation in the bowels will flush the IG out, leaving us depleted. But it is a patch on a leak, and it doesn't usually address the cause, which is what I am chasing. I can tell at this point that there are actually many kinds of Crohn's, IBS, Colitis. The difference being visible during exams like colonoscopy, endoscope, etc. Many of us have no signs of the disease, but all the symptoms, and we don't react to the medications. Not necessarily that food supplement, or the things to slow down the bowels like immodium, or opiates. All which help remove fluids and slow things down. That reaction seems to be fine. I mean the other drugs, which I have tried, and usually just made me sicker. So instead of looking for the cause, they just switch to this medication, then that one, while I lose another 25 lbs waiting for something to help me. Suffering away the whole time.
So since osteo issues have now started, and the mood changes, I started looking at the neurotransmission and was very happy to see that all of my symptoms are covered by one thing, serotonin sitting in the nerve for too long. This causes irritation, and the flushing of the bowels. But it also causes the osteoporosis and the bad temper. So all explained in one thing, now if I can get my doctors to listen and read, test and try, this may solve the problem. But do you think they are trying? No, they are not. Just ignore me because I don't fit some template they learned in school.
My question, how many people are suffering for years in pain and falling apart, simply because these doctors are not reading the latest scientific research?
So, hopefully something will help you before you go for years and years, become a skeleton, start having surgeries to fix the intestinal parts that are shredded from all the bathroom visits, etc.
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