Jump to content

Have Any Of You Had Your Quantitative Immunoglobulins Tested?


arizona girl

Recommended Posts

As some of you know I was diagnosed with autoimmune Small fiber autonomic neuropathy. I was receiving plasmapheresis from march to may. It stablized my wild BP/HR swings. During the treatments though I developed anemia and elevated wbc. Further blood work was done including a quantitative immunoglobulin. I had extemely low igg and no igm. Though I wasn't tested for it, you can have abnormal B and T cell antibodies and a normal or abnormal immunogolbulin test. When these are abnormal they are associated with auto immune auto antibodies that cause autoimmune illness. These finding along with the new infection on board added to my diagnosis and finally led to the main source of why I'm ill.

I have been diagnosed with Common variable Immune Deficiency (CVID). The interesting thing about it, is, that more often then not it has an companion autoimmune disease along with it. Thus this explains the autoimmune SFN. I can look back now on my health history and see that it explains a lot. I had digestive issues as an infant, my baby teeth came in decayed, I had chronic gum infections, all childhood diseases, chronic sore throats and swollen glands (until tonsil were removed at 21), I have repeated vaginal infections with yeast and bac vag and I now realized I have had the small intestine bacterail overgrowth messing with my gi system. I also had mono and have positive titers for hv66, cytamegalo and ppd, though no active disease. More people with it though get bad sinus and respiratory infections. Antibiotics just for the GI tract finally lowered my white blood count and Iron infusion corrected the anemia.

When your body can't mount an adequate defense you also don't tend to run the high fevers that help your body fight off infection. Which explains my rather wimpy transient low grade fevers. Also, nearly eight percent developed non-Hodgkins lymphoma (NHL); another one to two percent had Hodgkins lymphoma; and other individuals had 24 different cancers, including breast cancer, prostate cancer, squamous cell carcinoma, melanoma, and basal cell carcinoma.

The treatment is IVIG, antibiotics and treatments associated with any autoimmune or secondary condition.

This condition is something that wasn't even on my radar and I don't know that I've seen it posted here. I do know that I've read a lot of post with some of you saying that your dealing with some of the symptoms I've noted here today. Many of us with SFN don't know what caused it, and the resulting dysautonomia symptoms. It is a simple blood test. My first test last year was barely normal, so it wasn't caught, but I had just been on antibiotics prior to the test, so they were starting build up again. My guess is that everytime I started getting sick they tanked. It all sort of makes sense now.

I have made it through 2 months of IVIG infusions. Some headaches the week of the infusions, but acceptable, for what I need the IVIG for. When I stopped the pharesis the BP/HR started swinging again that has not yet corrected. The doctor said it would take 3 months of infusions (2 days, once a month) to build up the igg. It takes 6 months for nerves to repair, so it might take that long before I see any autonomic changes. But, I have a shot a stabalizing and that is hopeful isn't it?

Link to comment
Share on other sites

Interesting, and I am glad to see someone with a firm possibility to help their dys.!

I had been tested for celiac last year, and my total IgA was in the normal range, but my anti-gliadin Iga was 4x normal. But, from what you are saying, we should know our IgG and IgM levels?

I would like to add that ErikainOrlando was going through the plasmapheresis(?) treatments this summer, and we only heard from her one time, about a month ago. She said she was doing great and doing things she hadn't done in years. And, then we haven't heard from her again! Would like to hear when people get better to hear how and what was the culprit of their dys. so some of us can possibly look at those angles with our own dys. problem. Thanks for posting and keep us informed on your progress.

Link to comment
Share on other sites

Thanks for your thoughts, I was wondering about ericka too, I think she was also getting ivig. Yes the main reason I post, is so that it may help someone else. My path has been long and argeous. If something I tell here makes it easier for someone else, all the better.

Actually the Quantitative immunoglobulin checks total igg, iga and igm counts. There are other specific immuglobulin test that are associated with certain other illnesses, like your test. There is also a sub igg panel and other labs for Igd and Ige. My doc didn't do the sub igg, and now that I'm on the ivig we wouldn't know if they were mine or from the infusion. Wish I'd had those done before treatment. Not that it would have changed treatment, and would have just given a better idea where I'm vulnerable.

Link to comment
Share on other sites

Hey Arizona Girl-

Glad you posted. I've been following your progress. I have something like you, but I've not pushed for a specific DX. I, too, have low IGG, around 500. Out of curiosity, what's yours? My IgA is intermittently low and my IgM has been stable. When I dip below 500, my allergist/immunologist talks about IVIG, but so far I've avoided it. I just had my immunoglobulins checked again yesterday- waiting for new results.

Like you, I've had an awful time with sore throats, swollen glands,painful ears. They occur anytime I'm tired. I also deal with chronic sinus stuff. The GI stuff has been ongoing for me as well. I'm DXed with MCAD, but wonder if my chest tightness is more a result of a smoldering infection (like my sinuses) rather than my mast cells. I have not been told I have CVIDS, but I seem to meet the criteria. There is a subgroup of folks with depressed immunoglobulins that appear to be OK. My allergist wants to put me in that group :rolleyes: and attribute my symptoms to MCAD.

I intermittently have symptoms of SFN, awful burning on the bottoms of my feet, etc but it's not consistent. When you get your ANA checked is that abnormal for you? Mine never has been.

I'm glad you've gotten to the bottom of the cause of your dysautonomia. Has the IVIG improved your symptoms? Has it improved your dysautonomia too? Have you had any negative reactions to the infusions? Thanks for sharing your story with us.

Hugs-

Julie

Link to comment
Share on other sites

Thanks issie!

Mack's mom my igg was 152, iga 94, igm no number less then 25. So very bottom of the barrel. My igg last year was 701, iga 265, igm 58. So you can see I had a huge drop to the basement. The worst of the treatment the first month was a reaction, but they treat you with benadryl and decadron if that happens, I had a lot of headaches that month, made it hard to type. Last week I had my second round without decadron did really good the first day and the next, drove myself on wednesday, so they speeded me up and I also did well, that nite though woke up with bad headache took some meds and that was the worst of it. There were a few moments the first round when almost felt normal, but I had an infection brewing. This month I haven't felt that yet and my HR/BP are swinging again which always makes me tired. I will take labetalol on bad days, but not every day until we see some changes. It will take a least 3 months and longer for the SFN, mine are autonomic symptoms, I don't get much of the burning. I will be honest and let everyone here know if I improve or don't as it happens. Just too soon yet.

I did read up on your mcad, but I wasn't having most of those symptoms, but you can have CVID and present as you do, from what I've read so far. Yah, once again I don't present with the most common symptoms, but the subgroup. But I do fit into the subgroup very well. It is interesting how you mention smouldering infection. My cardio when I told her I had cvid, goes, Oh my gosh I'm learning new things because of you. I was like oh you haven't heard of it, she said yes in nursing school, but I've never had a patient. She had been telling me we sort of know what's going on with you, but it's all not there yet. As soon as I told her about the CVID, her eyes got big and she said all the pieces of there now this all makes sense now. She told me not to worry about the elevated cholesterol and platlets and sugar/insulin problems she said all of those can be a reactionary response to inflammation and infection. "So, lets see what these treatments do and we'll look at your labs again in a few months."

I mean think about it if you immuglobulins are low and you have a smouldering infection your body is always in fight mode, no wonder we are tired and feel like crap. Then there is the auotimmune component which presents in many different ways, my case it's sfn causing dysautonomia, your case mcad. Oh and yes I had a pretty high ANA for years when first diagnosised 20 years ago, it's normal now, but it can also a marker for CVID and still a marker for me because it was a sign there was autoimmune illness present, but it doesn't always have to be there. So, if if we are always in fight mode and IVIG will help us fight of the infections and keep infection rates lower, it sure is worth a shot. It may not cure everything, but if it takes some of the stress off, that can only be good. The infusion, when done properly at an experienced infusion center are nothing to fear. Who administrates it and there protochols are important, rate of infusion should start very slow to avoid reaction.

I hope this helps you and your son. The other name for cvid is hypogammaglobulinemia, ton of info under both google searches. Ivig was created to treat this condition, but is now being used for many autoimmune illnesses.

Link to comment
Share on other sites

Thanks issie!

Mack's mom my igg was 152, iga 94, igm no number less then 25. So very bottom of the barrel. My igg last year was 701, iga 265, igm 58. So you can see I had a huge drop to the basement. The worst of the treatment the first month was a reaction, but they treat you with benadryl and decadron if that happens, I had a lot of headaches that month, made it hard to type. Last week I had my second round without decadron did really good the first day and the next, drove myself on wednesday, so they speeded me up and I also did well, that nite though woke up with bad headache took some meds and that was the worst of it. There were a few moments the first round when almost felt normal, but I had an infection brewing. This month I haven't felt that yet and my HR/BP are swinging again which always makes me tired. I will take labetalol on bad days, but not every day until we see some changes. It will take a least 3 months and longer for the SFN, mine are autonomic symptoms, I don't get much of the burning. I will be honest and let everyone here know if I improve or don't as it happens. Just too soon yet.

I did read up on your mcad, but I wasn't having most of those symptoms, but you can have CVID and present as you do, from what I've read so far. Yah, once again I don't present with the most common symptoms, but the subgroup. But I do fit into the subgroup very well. It is interesting how you mention smouldering infection. My cardio when I told her I had cvid, goes, Oh my gosh I'm learning new things because of you. I was like oh you haven't heard of it, she said yes in nursing school, but I've never had a patient. She had been telling me we sort of know what's going on with you, but it's all not there yet. As soon as I told her about the CVID, her eyes got big and she said all the pieces of there now this all makes sense now. She told me not to worry about the elevated cholesterol and platlets and sugar/insulin problems she said all of those can be a reactionary response to inflammation and infection. "So, lets see what these treatments do and we'll look at your labs again in a few months."

I mean think about it if you immuglobulins are low and you have a smouldering infection your body is always in fight mode, no wonder we are tired and feel like crap. Then there is the auotimmune component which presents in many different ways, my case it's sfn causing dysautonomia, your case mcad. Oh and yes I had a pretty high ANA for years when first diagnosised 20 years ago, it's normal now, but it can also a marker for CVID and still a marker for me because it was a sign there was autoimmune illness present, but it doesn't always have to be there. So, if if we are always in fight mode and IVIG will help us fight of the infections and keep infection rates lower, it sure is worth a shot. It may not cure everything, but if it takes some of the stress off, that can only be good. The infusion, when done properly at an experienced infusion center are nothing to fear. Who administrates it and there protochols are important, rate of infusion should start very slow to avoid reaction.

I hope this helps you and your son. The other name for cvid is hypogammaglobulinemia, ton of info under both google searches. Ivig was created to treat this condition, but is now being used for many autoimmune illnesses.

Wow, your IgG was REALLY in the basement. What an enormous drop from just the year before!!! I am terrified of IVIG, but your experience doesn't sound too bad. I have my fingers & toes crossed that it improves things for you.

To clarify, I do have autonomic symptoms- they are apparently caused by the MCAD. I'm not sure if MCAD is considered autoimmune....I'm a little confused about that. My mast cells are hyper-vigalant & get stirred up pretty easily- that much I know. I'm DXed with hypogammaglobulinemia, but not CVID. My IgG is low, but stable. My allergist/immunologist says that if it's still stable, we'll go to testing every 9 months unless I start feeling really badly.

I know IVIG is used for this condition & find it VERY interesting that it's being used by some to treat dysautonomia. Any more treatments or are you done for now? Please keep us posted on how you are doing.

Hugs-

Julie

Link to comment
Share on other sites

Actually hypogammaglobulinemia is my official diagnosis, CVID is just another name for it, they are bascially the same thing. They are under the category of primary immune deficiency and there are about 12 different types under that umbrella, some that only males get, maybe your son?. IDF and ipopi are some of the immune deficiency web sites. Really helpful! Seems I may have given you some new reading up to do.

IVIG actually is being used for a lot of conditions that cause dysautonomia symptoms, not dysautonomia itself. It is being used off label for sfn. It is used with a lot of neuromuscular neuropathy, hematology illnesses, ms, some cancers. There are some ivig forums and a lot of the cvid (easier to say and type) patients do very well.

If your doc prescribes the ivig it will be for hypogamma not the mcad. I don't think that is on the fda approved list.

Yes, I was nervous about getting it at first, but I realized I didn't have much choice after my igg went into the basement. I really want to get better or at least stabalize. Really now that I've had it, ivig isn't that scary at all, and after a few treatments the side effects don't come any more. I infuse with other people and it has been nice talking to them. They all tell me it gets easier and that it helps them from getting worse.

Yes, I have the next one scheduled and the week before the 4th one we recheck the labs and see where my numbers are at, then we decide the frequency from there. It may be monthly, it depends on if my body starts to make them again on it's own, with the boost from ivig. If it's life long, so be it, I can deal with that, if it shorter frequency thats good too. Thanks for your though and insight, it nice to have it!

Link to comment
Share on other sites

Actually hypogammaglobulinemia is my official diagnosis, CVID is just another name for it, they are bascially the same thing. They are under the category of primary immune deficiency and there are about 12 different types under that umbrella, some that only males get, maybe your son?. IDF and ipopi are some of the immune deficiency web sites. Really helpful! Seems I may have given you some new reading up to do.

IVIG actually is being used for a lot of conditions that cause dysautonomia symptoms, not dysautonomia itself. It is being used off label for sfn. It is used with a lot of neuromuscular neuropathy, hematology illnesses, ms, some cancers. There are some ivig forums and a lot of the cvid (easier to say and type) patients do very well.

If your doc prescribes the ivig it will be for hypogamma not the mcad. I don't think that is on the fda approved list.

Yes, I was nervous about getting it at first, but I realized I didn't have much choice after my igg went into the basement. I really want to get better or at least stabalize. Really now that I've had it, ivig isn't that scary at all, and after a few treatments the side effects don't come any more. I infuse with other people and it has been nice talking to them. They all tell me it gets easier and that it helps them from getting worse.

Yes, I have the next one scheduled and the week before the 4th one we recheck the labs and see where my numbers are at, then we decide the frequency from there. It may be monthly, it depends on if my body starts to make them again on it's own, with the boost from ivig. If it's life long, so be it, I can deal with that, if it shorter frequency thats good too. Thanks for your though and insight, it nice to have it!

Wow, so you keep at it until your numbers look somewhere near normal? I pray that is soon. I looked into the links you recommended- load of info! I guess I don't have hypogammaglobulinemia, but rather dysgammaglobulininemia as my IgM is within low normal range. The "Dys" form is when just 1 or 2 of your gammaglobulins are low. "Hypo" is when all of them are low. My doc suggests that "hypo" or "dys" is a characteristic of CVID- not the complete criteria. I'm not looking to add any new DXes so I sure won't push the point :rolleyes: My son's had his levels checked and surprisingly they were all normal. Not sure how this links into everything else for me :unsure:

Sending positive thoughts your way so that this proves a huge success for you. Thanks for sharing & educating me. Keep us all posted.

Julie

Link to comment
Share on other sites

Hi, actually no you don't need all three any combination of two diagnosis hypogamma/cvid. My iga is low normal, but my igg and igm below normal. Most have the low igg/iga combo, the low igm is less common.

I guess the thing with the infusions is that they only last 3-4 weeks for cvid, then your number drop off again. The hope is that ivig will boost my system to doing it itself, that often doesn't happen though. Then you have to keep replacing them with monthly ivig. It can be longer depending on the diagnosis. Your right they do some other testing with vaccines to see if you produce antibodies to the vaccine. If you don't respond it is confirmed. Mine was so low and with an infection on board and the autoimmune sfn, insurance approved it, without the vaccine testing. I understand you don't want to add to your list, they do just seem to get longer don't they, but you also have to consider this might be one of the primary causes of the other things, and with treatment everything might improve. The fact that your doctor has suggested it for you says a lot. That though is a personal choice only you can decide, and I respect that. I think intuitively we all know whats best for our uniques issues.

Thank you! I sure hope in a few months I can come back and say it's working, it's working!!!! I too hope things get better for you and son too!

Link to comment
Share on other sites

Hi, actually no you don't need all three any combination of two diagnosis hypogamma/cvid. My iga is low normal, but my igg and igm below normal. Most have the low igg/iga combo, the low igm is less common.

I guess the thing with the infusions is that they only last 3-4 weeks for cvid, then your number drop off again. The hope is that ivig will boost my system to doing it itself, that often doesn't happen though. Then you have to keep replacing them with monthly ivig. It can be longer depending on the diagnosis. Your right they do some other testing with vaccines to see if you produce antibodies to the vaccine. If you don't respond it is confirmed. Mine was so low and with an infection on board and the autoimmune sfn, insurance approved it, without the vaccine testing. I understand you don't want to add to your list, they do just seem to get longer don't they, but you also have to consider this might be one of the primary causes of the other things, and with treatment everything might improve. The fact that your doctor has suggested it for you says a lot. That though is a personal choice only you can decide, and I respect that. I think intuitively we all know whats best for our uniques issues.

Thank you! I sure hope in a few months I can come back and say it's working, it's working!!!! I too hope things get better for you and son too!

I keep learning more and more :rolleyes: . I had that test re. vaccines at Brigham & women's. Apparently I had had pneumonia a few months earlier (unbeknowst to me- was sick as a dog- doc said sinus infection) and my body produced SOME (not all!) antibodies to it. Maybe that's why my allergist/immunologist sat I have "hypo", but not CVID???

Thanks for all of the info. i swear members hear teach me more than any physician ever has :P Feel better!

Julie

Link to comment
Share on other sites

Sorry haven't received any pm's. I can't even find the link to them on this new forum.

I looked back on the messeage I'm trying to send to you. You have your notifications turned off. At the top of the page where you see your name in the right corner, click on the arrow on the right and then you can get your messeages, but before you do that click on the arrow on the left and change your notification settings, so that you get the notice that you have one. My guess is that you will have a number next to your name and that is how many messeages you have. Right now, I have a 0 - no messeages. But, when you reply - it will show me a 1. Also, I set my notifications to alert me the second someone responds to my PM's then I know they are on-line and can converse via PM's with them, right then. Hope this helps.

Link to comment
Share on other sites

AZ-

This has turned out to be timely for me :blink: I just got a call from my allergist/immunologist and my numbers are dropping. I'm still a long ways away from you, but things are moving in the WRONG direction. The only specific # I got was for my IgG -450. I think normal is 750-1500. I have to go in for more blood work next week. He's going to run that test you spoke about to see if my body is making any antibodies at this point. He's also going to break down my immunoglobulins and check each of the levels.

I especially appreciate your sharing your IVIG experience. I have been terrified of it as I worried about an allergic reaction, but the fact that they concurrently deliver benadryl and steroids makes me feel better.

Aside from the autonomic stuff, my only symptoms at this point are bone crushing fatigue by 3PM every afternoon, sore throat, ear pain (resolved by sleep), a smoldering sinus infection, and awful night sweats. Any of that sound familiar? Wonder if it's even connected?

You feel any better? What are your latest numbers?

Thanks for your ongoing help-

Julie

_________________________________________________

BTW, Issie- I think I've read & responded to all PM's. Enjoyed chatting with you! "Preciate your inquisitive out-of-the-box thinking.

Link to comment
Share on other sites

Hi Julie, I was thinking about you again today to when I re-read your thread on lymes. I had meant to ask how that was going and there was the answer in your new post today. I'm glad that you all got thru it okay.

Here's something else for you to think about. When you posted about the lymes symptoms/reaction you and your son had, you said he got really ill and yours was more moderate with just flew like symptoms, right?

Well when doing research on hypogamm/cvid I found out that when you are immune deficient your body is unable to mount a normal attack on the bacteria or virus. Fevers are designed to kill the bacteria. When you don't have a proper immune system you can't mount a proper fever. I could never understand why I would feel so terrible but I would only have these wimpy, transient, low grade fevers. Even when my colon ruptured and my wbc was in 20,000-30,000 range the highest my fever got was 100.3. When you don't have a fever doctors don't think your sick with a bug. Didn't you say your son's Q. immunoglobulins were normal and your's weren't, may explain the different reaction between the two of you. Here's a little quote I pulled from one of the research sites:

"Address colds and minor sinus infections promptly and don't rule out sinus or respiratory infection simply by the lack of fever. Many immune deficiency patients lack antibodies to produce standard symptoms in common illness. Consult you physician for medications that reduce mucus and minimize allergies and discuss antibiotic therapy regularly."

Read more: How to Live Better With Immune Deficiency | eHow.com http://www.ehow.com/how_2197065_live-better-immune-deficiency.html#ixzz0yTxh0pxR

I can't wait to go back into my primary care and let them know that bit of info. My neuro is great, but my pcp is still getting to know me and my long list of issues.

Well, I'm so glad this was timely for you. It sounds like your doc knows what he's doing. Running the sub igg panel and the vaccine challenge will tell you a bit more and maybe point you to which of the primary immune disorders you have. Remember too you just had and infection and antibiotics. You might have been even lower during the infection phase. Do get your a copy of that test, because depending on what's going on with your IGA and IGM, if they are off either hyper or none, treatment direction changes a bit or there is chance for a reaction with ivig products that have iga in them. So, once you know your results go back and figure out which one you fit in and read the treatment protochol for that one. The other thing that causes a reaction is if the infusion rate is too high. If you do ivig don't let them run the infusion rate higher then 100 on the first round. I'm glad you feel better about the IVIG, a good infusion center is equipped to handle reactions, I had one the first round and the whole thing was over in 30 minutes, though I did have on going headaches, and of course my symptoms haven't resolved yet, but I was pretty dam low and that doesn't correct with 2 rounds of treatment.

Well I do get the nite sweats, but are they a sign of menopause or illness? I have had nite sweats on and off for years, my sinuses are so dry that they cause sinus pressure that is relieved if I can sneeze, and yes I always am pooped. I seem to be more susceptible to GI and Girl infections. So your symptoms sound more classic then mine from what I've read so far.

Thank you to Julie, you are a great help to all of us here on the fourm. I'm glad we are all here to help each other.

Link to comment
Share on other sites

Hi Julie, I was thinking about you again today to when I re-read your thread on lymes. I had meant to ask how that was going and there was the answer in your new post today. I'm glad that you all got thru it okay.

Here's something else for you to think about. When you posted about the lymes symptoms/reaction you and your son had, you said he got really ill and yours was more moderate with just flew like symptoms, right?

Well when doing research on hypogamm/cvid I found out that when you are immune deficient your body is unable to mount a normal attack on the bacteria or virus. Fevers are designed to kill the bacteria. When you don't have a proper immune system you can't mount a proper fever. I could never understand why I would feel so terrible but I would only have these wimpy, transient, low grade fevers. Even when my colon ruptured and my wbc was in 20,000-30,000 range the highest my fever got was 100.3. When you don't have a fever doctors don't think your sick with a bug. Didn't you say your son's Q. immunoglobulins were normal and your's weren't, may explain the different reaction between the two of you. Here's a little quote I pulled from one of the research sites:

"Address colds and minor sinus infections promptly and don't rule out sinus or respiratory infection simply by the lack of fever. Many immune deficiency patients lack antibodies to produce standard symptoms in common illness. Consult you physician for medications that reduce mucus and minimize allergies and discuss antibiotic therapy regularly."

Read more: How to Live Better With Immune Deficiency | eHow.com http://www.ehow.com/how_2197065_live-better-immune-deficiency.html#ixzz0yTxh0pxR

I can't wait to go back into my primary care and let them know that bit of info. My neuro is great, but my pcp is still getting to know me and my long list of issues.

Well, I'm so glad this was timely for you. It sounds like your doc knows what he's doing. Running the sub igg panel and the vaccine challenge will tell you a bit more and maybe point you to which of the primary immune disorders you have. Remember too you just had and infection and antibiotics. You might have been even lower during the infection phase. Do get your a copy of that test, because depending on what's going on with your IGA and IGM, if they are off either hyper or none, treatment direction changes a bit or there is chance for a reaction with ivig products that have iga in them. So, once you know your results go back and figure out which one you fit in and read the treatment protochol for that one. The other thing that causes a reaction is if the infusion rate is too high. If you do ivig don't let them run the infusion rate higher then 100 on the first round. I'm glad you feel better about the IVIG, a good infusion center is equipped to handle reactions, I had one the first round and the whole thing was over in 30 minutes, though I did have on going headaches, and of course my symptoms haven't resolved yet, but I was pretty dam low and that doesn't correct with 2 rounds of treatment.

Well I do get the nite sweats, but are they a sign of menopause or illness? I have had nite sweats on and off for years, my sinuses are so dry that they cause sinus pressure that is relieved if I can sneeze, and yes I always am pooped. I seem to be more susceptible to GI and Girl infections. So your symptoms sound more classic then mine from what I've read so far.

Thank you to Julie, you are a great help to all of us here on the fourm. I'm glad we are all here to help each other.

Very interesting.... I am so thankful to you, AZ- really you have taught me so much. You're right, I rarely have a fever even when I'm deathly ill. When I had pneumonia, I just took to my bed, feeling awful, with lymph glands incredibly sore. I could barely drive Mack to school. That's all I did & sleep for a week. NO FEVER!!! I eventually ended up at urgent care when I felt well enough to get there (hubby out of town, of course) :rolleyes: and got an IV and steroid shot. All the doc DXed me w/was a sinus infection. I later learned it was pneumonia when my antibodies were checked. I almost never get a fever. Your link explains alot.

I also have to constantly treat a smoldering sinus infection with Wilson's Solution (antibiotics and saline) via a neti pot AND I take a daily 50 mg doxycycline because it makes me feel better. I started as a treatment for rosecea. When I stop, I feel worse- achey, inflamed, fatigued. When I start back, I feel better. Dr. Rowe is treating his patients with antibiotic therapy w/o knowing exactly how it works. You may have explained it for me- keeps the buggers at bay :P

I think the night sweats are a symptom beyond menopause as I don't have hot flashes during the day, certainly not as many as I have at night. Night sweats are common in HIV, with smoldering infections- could that be us (sans HIV, of course.)

Have any docs definitively linked your CVID to dysautonomia? Is there a medical study or piece of literature that makes that connection? It makes perfect sense, just wondering of the eggheads have connected the dots ;)

Have they checked your numbers since your treatments? I'm dying to know if it's helped. Thanks again, AZ. You have taught me so much & I'm sure I'll have more questions for you soon :P

Thanks-

Julie

Link to comment
Share on other sites

This is a very interesting thread... I have a lot of symptoms that are thought to be multi-factorial in their etiology - and I always have this borderline everything.... So hypermobility syndrome is chosen rather than EDS, ANA travels through the years from normal to not normal but always on the edge. Blood sugars present normal most often on fasting yet a high hba1c of 6. Small fiber neuropathy. Chronic s1L5 radiculopathy -- Many places of tendonitis like elbows, hands, shoulders etc. Vasomotor instability with labile b/p. Some leg muscle insufficiency -- it just seems to go on and on ...

As far as Immunology I get that my quant. IGG is high - but not terribly high. So my ref. range for normal is 700 -1600..........My number is 1690. So then in fine print is that this is an apparent polyclonal gammopathy with Kappa and lambda appearing increased. I read you can find this when there is a constant exposure to antigens... Inflammatory things like lupus, Rheumatoid Arthritis, chronic liver disease, sarcoid - immune mediated things perhaps too.

I have trouble understanding why I'm such a wreck in the functional world - yet there is no one answer. Nothing shouts out as 'the cause' alone. Very very frustrating because again before the knee replacements life was without all of this body wide pain and stiffness. It came on out of nowhere.

But if having too much IGG has anything to do with not getting 'sick' in terms of the common cold -- Knock on wood I will get a cold perhaps once every 7 years or so. Anyway till such time I gain an understanding that truly hits home on all fronts in my regard -- I most certainly do pray you each get very well - the best health achievable and very soon....

Link to comment
Share on other sites

Nowwhat--I am like you in regards to never being "sick" sick. Just POTS weird! I have had one cold, that's 1!, in the last about 14 years. I remember because my youngest was roughly 4 at the time and she is now 18. It's like my immune system is always on high alert or something. I don't pick up anything that my kids brought home from school.

Link to comment
Share on other sites

Nowwhat--I am like you in regards to never being "sick" sick. Just POTS weird! I have had one cold, that's 1!, in the last about 14 years. I remember because my youngest was roughly 4 at the time and she is now 18. It's like my immune system is always on high alert or something. I don't pick up anything that my kids brought home from school.

Interesting. I feel like mine was on high alert for so long that it finally crashed :unsure:

Link to comment
Share on other sites

Yikes -- Crashing immune systems does not sound like anything anyone should have to endure - but alas I guess it does happen. Well I guess when things get there bleekest the only way is up up and up --- cheers to everyone feeling better = much better - soon and that the wellness continues either slow and steady or the much desired fast and furious....to your improving health everyone.

Link to comment
Share on other sites

Hi, Julie,

First, how did your labs go today?

That's interesting about the doxy. I had to take that for a month after one of my crowns went bad. I remembered noticing I felt better on it. I ask for it for the GI stuff and they said it wasn't broad enough for the gut. The thing is cipro and levequin flare up the neuropathy and cause severe body pain. They gave me amoxy last time and then that new GI one xifaxin. My gut is still off in the upper area, maybe I have yeast now.

I don't get hot flashes during the day either, but the nite sweats do seem to happen between ovulations and menstruation, but then I get yeast infections too during that time. Maybe just having my cycle is enough to further suppress my immune system. Thing is antibiotics aggravate yeast, so vicious cycle probably going on here. It sounds like you have a few doctors that seem to be on the right track, very fortunate for you.

When you read about CVID you will see that there is a very strong association with autoimmune disease and lymphoma. That is how I first presented 20+ years ago, positive ANA and now we know from skin biopsy that I have autoimmune small fiber autonomic neuropathy. The wild swings in BP/HR got me the tilt table that proved that, then the catchcolamine test showed that the norepinephrine almost tripled standing and my supine eppy was elevated as well. When those are elevated it also causes problems with insulin and glucose regulation, which I also have. As the small fiber neuropathy is one of the causes of pots and thus under the umbrella of dysautonomia I'd indeed say they are linked. My neuro said that they were as well. There are quite a few different autoimmune conditions connected to CVID in studies, including arthritis, diabetes, anemias, lupus.

I have one more month of infusions then the week before the 4th I'm to check them again. IVIG though doesn't stay in your body more then 3-4 wks, so it will depend if we wake the immune system and it goes back to work then I would taper I think, but if that doesn't happen I will probably have to have replacement ivig for the rest of my life. Most people with CVID are on it for life, but there are always exceptions and the length in between can sometimes be lengthened..

I'm so glad I could help, but the truth is though I had never heard of this condition until a few months ago. I'm just good at researching. You, actually have been buzzing around the topic for awhile now, just not landing on the right bit to bring it to light for yourself. Though you know what they say about fresh eyes looking at something. My eyes couldn't have been fresher, as I'd never heard of it before.:rolleyes: You've been helping out a lot of forum members for a long time with what you do know and you are so nice about it. Please ask any question you like, I'll find out if I can. I happy I get to be the guinea pig for the forum, maybe it will help some one else.:D

Very interesting.... I am so thankful to you, AZ- really you have taught me so much. You're right, I rarely have a fever even when I'm deathly ill. When I had pneumonia, I just took to my bed, feeling awful, with lymph glands incredibly sore. I could barely drive Mack to school. That's all I did & sleep for a week. NO FEVER!!! I eventually ended up at urgent care when I felt well enough to get there (hubby out of town, of course) :rolleyes: and got an IV and steroid shot. All the doc DXed me w/was a sinus infection. I later learned it was pneumonia when my antibodies were checked. I almost never get a fever. Your link explains alot.

I also have to constantly treat a smoldering sinus infection with Wilson's Solution (antibiotics and saline) via a neti pot AND I take a daily 50 mg doxycycline because it makes me feel better. I started as a treatment for rosecea. When I stop, I feel worse- achey, inflamed, fatigued. When I start back, I feel better. Dr. Rowe is treating his patients with antibiotic therapy w/o knowing exactly how it works. You may have explained it for me- keeps the buggers at bay :P

I think the night sweats are a symptom beyond menopause as I don't have hot flashes during the day, certainly not as many as I have at night. Night sweats are common in HIV, with smoldering infections- could that be us (sans HIV, of course.)

Have any docs definitively linked your CVID to dysautonomia? Is there a medical study or piece of literature that makes that connection? It makes perfect sense, just wondering of the eggheads have connected the dots ;)

Have they checked your numbers since your treatments? I'm dying to know if it's helped. Thanks again, AZ. You have taught me so much & I'm sure I'll have more questions for you soon :P

Thanks-

Julie

Link to comment
Share on other sites

Hey AZ-

I hate that you have to wait so long to see if your own immune system is kicking-in, but I understand that testing now would be pointless. I had more blood drawn yesterday so my allergist will probably call me before the end of the week with results. He's formerly from Mayo/MN & I'm so lucky to have him. I think because I dipped below 500, he's taking this pretty seriously. I'll see if I get to join your IVIG club :rolleyes: Wish you lived nearby so we could do it together

Yeah, xifaxin is really the only anti-B that works on the gut...and flagyll, but that's pretty nasty. Mack and I both take daily doses of probiotics (Culturelle) to keep the GI bacteria in balance. He takes 50 mg of minocyline AM & PM and TWO Culturelle in between. I only take 50 mg of doxy daily- so one Culturelle for me. That makes all of the difference.

I know you probably already know this, but NO sugar or processed (white) food to keep the yeast balanced. I'm OK as long as I'm really strict with that.

I have fingers and toes crossed that your immunoglobulins will be normal and STAY that way. BTW, I drink oodles of green tea (cold in the summer) to support my immune system. Can't hurt. Keep us posted. And, thank you for your help & kind words!

Julie

Link to comment
Share on other sites

Join the conversation

You can post now and register later. If you have an account, sign in now to post with your account.

Guest
Reply to this topic...

×   Pasted as rich text.   Paste as plain text instead

  Only 75 emoji are allowed.

×   Your link has been automatically embedded.   Display as a link instead

×   Your previous content has been restored.   Clear editor

×   You cannot paste images directly. Upload or insert images from URL.

×
×
  • Create New...