Guest pandas16 Posted March 1, 2011 Report Posted March 1, 2011 (edited) I have PANDAS and I don't have any immunodeficiencies. I rarely get sick. I only had sinus infections during allergy season. I've never had the flu, I rarely get colds, and hardly ever do I get stomach bugs. I got strep twice in my life. 1st time caused PANDAS, second time was missed and caused acute rheumatic fever. I have a positive D8/17 marker. I have a terrible reaction Biaxin and anything else that stimulates my immune system- I had a very severe reaction to IVIG although it did mildly help my severe symptoms back in 98. I have an IgE double that of normal. Does anyone else feel like they have a hyper immune system? Just wondering. I got a mycoplasma infection in college and that was probably the first time in about 10 years that I really got sick. I mean- stay in bed sort of sick. Edited March 1, 2011 by pandas16
kimballot Posted March 1, 2011 Report Posted March 1, 2011 I have PANDAS and I don't have any immunodeficiencies. I rarely get sick. I only had sinus infections during allergy season. I've never had the flu, I rarely get colds, and hardly ever do I get stomach bugs. I got strep twice in my life. 1st time caused PANDAS, second time was missed and caused acute rheumatic fever. I have a positive D8/17 marker. I have a terrible reaction Biaxin and anything else that stimulates my immune system- I had a very severe reaction to IVIG although it did mildly help my severe symptoms back in 98. I have an IgE double that of normal. Does anyone else feel like they have a hyper immune system? Just wondering. Hi - I am curious about your IGE. You say you have sinus infections during allergy season and IGE double the normal... do you have underlying allergies year round?
Guest pandas16 Posted March 1, 2011 Report Posted March 1, 2011 I have food allergies & outdoor allergies. I have a hepa filter in case of indoor ones, but none that I know of
kimballot Posted March 1, 2011 Report Posted March 1, 2011 I have food allergies & outdoor allergies. I have a hepa filter in case of indoor ones, but none that I know of do you think the allergies may be the thing that has weakened your BBB? I am so curious about the role of allergies in PANDAS.
Guest pandas16 Posted March 1, 2011 Report Posted March 1, 2011 I'm not sure, but logically it would make sense because allergies cause inflammation and inflammation is a problem in most autoimmune disease. I know Lupus flares up during allergy season..
MomWithOCDSon Posted March 1, 2011 Report Posted March 1, 2011 Hi - Our PANDAS DS14 has no immune deficiencies, either. Interesting what you say about your IgE number; I'll have to look at the results of his immune panel again, but I do know that he was within the "normal" range for all measures: nothing high, nothing low. Our DS is rarely, if ever sick, also, though he does have allergies: mostly pollen and mold, but also some indoor allergens like dust and cats, too. I look at this as another piece of his hyper-immunity . . . his immune system calling out all the soldiers at triggers that would only mildly annoy a more typical person. Kind of like what happens to him when he's exposed to strep, only the strep is much harder to deal with. As a result, DS is asymptomatic for strep, except in terms of his psychological response. Same seems to happen with exposure to viruses. DH and I had that horrible norovirus that took us out of action for a solid 3 days each. DS didn't "catch it" in the classic sense like we did, but his OCD certainly spiked a few days later. Never tried Biaxin, only Augmentin, and had good results with it. Not tried IVIG, either. I breast-fed him for the first 11 months of his life, and we allowed him to have all his vaccinations thus far, as well. I suppose all of that only helped build this "hyper-immunity" in the end.
kimballot Posted March 1, 2011 Report Posted March 1, 2011 I don't know if it is "hyper immunity" versus "immune deficient" or if it is all versions of immune dysfunction. There are kids who are deficient in IGG or IGA, but who still have allergies. I truly believe that we will one day find that the breach in the BBB is really the difference between PANDAS and Non PANDAS - whether it is from the inflammation of allergy, or inflammation from infection (which happens more often in kids with immune deficiency).... or both... and I think we will find that those nasty antibasal ganglia antibodies we keep measuring for Cam Kinase are floating in the blood stream of lots of kids... they just don't cross into the basal ganglia in everyone. NOTE: This is just my guess - not scientific fact!
Fixit Posted March 1, 2011 Report Posted March 1, 2011 I have PANDAS and I don't have any immunodeficiencies. I rarely get sick. I only had sinus infections during allergy season. I've never had the flu, I rarely get colds, and hardly ever do I get stomach bugs. I got strep twice in my life. 1st time caused PANDAS, second time was missed and caused acute rheumatic fever. 1I have a positive D8/17 marker. 2 I have a terrible reaction Biaxin and anything else that stimulates my immune system- 3 I had a very severe reaction to IVIG although it did mildly help my severe symptoms back in 98. I have an IgE double that of normal. Does anyone else feel like they have a hyper immune system? Just wondering. I got a mycoplasma infection in college and that was probably the first time in about 10 years that I really got sick. I mean- stay in bed sort of sick. 1 i don't believe we ever tested for that..is that something that was done with swedo??? are more people testing that one??? is it just for tics or for ocd too and or http://ajp.psychiatryonline.org/cgi/content/abstract/158/4/605 2 my son and his paternal side do not react well to it either... can you explain reaction... and how does it stimulate the immune system... do you have any problems with penicillans or other specific abx 3..so is that why the hd ivig was not good for you, because of high ige it is strang as you sound similar to my ds also in the very allergic pollen area....if you are very sensitive..you realize that you are bringing in stuff all the time, hair, shoes, coats, purses..just openeing an closeing the door... i started ds on allergy shots about 5 months ago...vvvveeeerrryyyy low....and the first few times it seemed to actually help immediately..coincidence to somehting else...idk..but a slight betterment 24 hours later..(as it is supposed to desensitize) and you cannot avoid pollens when you are that hyper sensitive.. his ig's are low side of normal.. failed igg subs
Guest pandas16 Posted March 1, 2011 Report Posted March 1, 2011 (edited) I have PANDAS and I don't have any immunodeficiencies. I rarely get sick. I only had sinus infections during allergy season. I've never had the flu, I rarely get colds, and hardly ever do I get stomach bugs. I got strep twice in my life. 1st time caused PANDAS, second time was missed and caused acute rheumatic fever. 1I have a positive D8/17 marker. 2 I have a terrible reaction Biaxin and anything else that stimulates my immune system- 3 I had a very severe reaction to IVIG although it did mildly help my severe symptoms back in 98. I have an IgE double that of normal. Does anyone else feel like they have a hyper immune system? Just wondering. I got a mycoplasma infection in college and that was probably the first time in about 10 years that I really got sick. I mean- stay in bed sort of sick. 1 i don't believe we ever tested for that..is that something that was done with swedo??? are more people testing that one??? is it just for tics or for ocd too and or http://ajp.psychiatryonline.org/cgi/content/abstract/158/4/605 2 my son and his paternal side do not react well to it either... can you explain reaction... and how does it stimulate the immune system... do you have any problems with penicillans or other specific abx 3..so is that why the hd ivig was not good for you, because of high ige it is strang as you sound similar to my ds also in the very allergic pollen area....if you are very sensitive..you realize that you are bringing in stuff all the time, hair, shoes, coats, purses..just openeing an closeing the door... i started ds on allergy shots about 5 months ago...vvvveeeerrryyyy low....and the first few times it seemed to actually help immediately..coincidence to somehting else...idk..but a slight betterment 24 hours later..(as it is supposed to desensitize) and you cannot avoid pollens when you are that hyper sensitive.. his ig's are low side of normal.. failed igg subs Back in 1998, I was part of a research study at NY Presbyterian that tested d8/17. I'm not sure if it is a test that is available now and I don't remember too much of the details because I was 9 & incapacitated. When I had IVIG they used Sandoglubulin (sp) which isn't even used anymore and I think it was low dose. I don't know how I would react to it now. When I took Biaxin in december, I had absolutely awful OCD and complete body tics. Everything came back. I don't know why. Things still haven't calmed completely. Edited March 1, 2011 by pandas16
eljomom Posted March 1, 2011 Report Posted March 1, 2011 Could your extreme symptoms in December have been from your worsening pandas due to the infection you were on Biaxin for, and maybe NOT from the Biaxin? I have PANDAS and I don't have any immunodeficiencies. I rarely get sick. I only had sinus infections during allergy season. I've never had the flu, I rarely get colds, and hardly ever do I get stomach bugs. I got strep twice in my life. 1st time caused PANDAS, second time was missed and caused acute rheumatic fever. 1I have a positive D8/17 marker. 2 I have a terrible reaction Biaxin and anything else that stimulates my immune system- 3 I had a very severe reaction to IVIG although it did mildly help my severe symptoms back in 98. I have an IgE double that of normal. Does anyone else feel like they have a hyper immune system? Just wondering. I got a mycoplasma infection in college and that was probably the first time in about 10 years that I really got sick. I mean- stay in bed sort of sick. 1 i don't believe we ever tested for that..is that something that was done with swedo??? are more people testing that one??? is it just for tics or for ocd too and or http://ajp.psychiatryonline.org/cgi/content/abstract/158/4/605 2 my son and his paternal side do not react well to it either... can you explain reaction... and how does it stimulate the immune system... do you have any problems with penicillans or other specific abx 3..so is that why the hd ivig was not good for you, because of high ige it is strang as you sound similar to my ds also in the very allergic pollen area....if you are very sensitive..you realize that you are bringing in stuff all the time, hair, shoes, coats, purses..just openeing an closeing the door... i started ds on allergy shots about 5 months ago...vvvveeeerrryyyy low....and the first few times it seemed to actually help immediately..coincidence to somehting else...idk..but a slight betterment 24 hours later..(as it is supposed to desensitize) and you cannot avoid pollens when you are that hyper sensitive.. his ig's are low side of normal.. failed igg subs Back in 1998, I was part of a research study at NY Presbyterian that tested d8/17. I'm not sure if it is a test that is available now and I don't remember too much of the details because I was 9 & incapacitated. When I had IVIG they used Sandoglubulin (sp) which isn't even used anymore and I think it was low dose. I don't know how I would react to it now. When I took Biaxin in december, I had absolutely awful OCD and complete body tics. Everything came back. I don't know why. Things still haven't calmed completely.
Guest pandas16 Posted March 1, 2011 Report Posted March 1, 2011 No, I don't believe so because I didn't have a positive IgM. They were treating me for mycoplasma on the basis of an IgG alone. Plus, I had no symptoms of illness. It was just to "make sure." It really caused me ######.
Fixit Posted March 1, 2011 Report Posted March 1, 2011 Could your extreme symptoms in December have been from your worsening pandas due to the infection you were on Biaxin for, and maybe NOT from the Biaxin? good reverse thinking...but i'm gonna guess the timing and onset were more correlated to start of abx..condition was around a few days, weeks prior.... and i as we all travel this road..we can pin point the triggers better... ie my ds screech and yeast/c.diff..just pray the vanco works again!!!! as in the last 24 hours has started hitting his head..not just his leg... AND oh crud about not clearing the biaxin... as per post about my in-laws where pit/pan stems....they just told me last night that they had bad reaction to biax and did not feel right for at least 3 months following...
Fixit Posted March 1, 2011 Report Posted March 1, 2011 No, I don't believe so because I didn't have a positive IgM. They were treating me for mycoplasma on the basis of an IgG alone. Plus, I had no symptoms of illness. It was just to "make sure." It really caused me ######. that is pretty much what happened here!!! other have posted same about biax let me throw this out there...do you think it could be herx????? idk ...just asking
nicklemama Posted March 1, 2011 Report Posted March 1, 2011 Interesting. I think my son may be hyper immune. He's never had a typical strep infection, only one ear infection per year, never tested for strep w/ ear infection. Never gets sick. His immune markers are all normal except IGG 4 which is high. He did really well on biaxin. He's currently on augmentin. Other than lack of strep documentation, his presentation was classic PANDAS. Too bad nobody recognized it at the time.
dut Posted March 2, 2011 Report Posted March 2, 2011 (edited) Hi - we had our dd7's D8/17 marker tested in 2008 shortly after she presented with PANDAS symptoms. It was part of a PANDAS panel..(I think the company was either Immunosciences or Neuroimmunology.. can't remember) she came back elevated but.. shortly after I saw a talk by Swedo where she said they can no longer do D8/17 as the line is no longer available, so it threw the whole panel into doubt for me.... Kimballot.. I read (and posted at the time) a good review article that said basically the same as you - that many folks produce auto-antibodies, it is part of a normal immune response but the issue is BBB breach. If no breach then no PANDAS.... Edited March 2, 2011 by dut
Recommended Posts
Create an account or sign in to comment
You need to be a member in order to leave a comment
Create an account
Sign up for a new account in our community. It's easy!
Register a new accountSign in
Already have an account? Sign in here.
Sign In Now