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IVIG # 2 do more harm than good?


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Great info in LLM post about Lyme Testing/Results.... Why some tests are better than others, etc.

 

http://www.latitudes.org/forums/index.php?showtopic=9844

 

I know Dr. Jones/Horowitz uses other labs as well as Igenex.... Speciality Labs is one 'I believe'. Our LLMD has a strong connect to Igenex and you must sign a waiver acknowledging he sits on their board. BUT, our LLMD does use other labs Metametrix, LBT and others that I am not familiar with yet for mycoplasma testing.

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Sounds very similar to our 'herxing/IVIG' experience.

 

Our Dr. will be walking us through the Herxing experience with our younger Daughter... we see him again in 9 days. Also taking an individual off antibiotics and how quickly they see a reemergence of symptoms guides them in which bacteria's to check for that individual. For example, my daughter got sick within days of stopping antibiotics and that 'apparently' is a sign of Bartonella. If my daughter had gotten sick within 3 to 4 weeks it would have pointed more towards Lyme. Bartonella 'apparently' can be transferred in-utero as well.

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SFmom and Mom2pandas, I am very concerned about the immune def and cancer connection, and it is why I am treating my dd with ivig. She has had 41 sinus infections, multiple pneum, low C4(7), low overall IGG(400 for 14 year old), which by the way now is the only indicator of immune defs, leading immune docs don't test subclasses anymore, they consider the data useless. So only low overall IGG's are indicator of immune def, usually seen with low IGM also. Even the pneumoccocal testing is going to be considered irrelevant soon. My dd also has incredibly high ana 2560, and high anti dopamine antibodies 4000, cam kin 165, and was in a b cell maturation study showing her b cells are attacking her body. She was first diagnosed with SC 7 years ago. WE live in Ohio not the mecca of Lyme. But low C4 and high ana are found in lymes, and yes I was diagnosed with ms. So I will go get the igenex test for myself, since my dd cannot get the test being on ivig. SFMOM, what does ur fatherinlaw think of all this lyme and congenital lyme talk. He seemed very involved with ur pandas decisions. Also if IVIG caused extreme herxing, why would that not be good and at some point u should see benefit from that???? What causes herxing from ivig? Is it killing off the bacteria? What happened to the other children that attending the playdate with the child with rheumatic fever, do they also have any Lyme? Are any still struggling with Pandas? Why is LaurenJohnsonsmom doing high dose monthly ivig on Lauren with Lyme, I guess ivig is a treatment for Lyme. And why will u not consider ivig for future treatments since ur son did so well with it? Thanks

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Peglem, everyone has turning back of the pages first ivig. I am not sure u can attribute it to low dose, or that it wasn't strong enough and just didn't help. (Which is what I think is the case) If she had high like some of the kids, then low and then high again u may be able to differentiate. Lots of kids have turning back of the pages first time. Plus most immunologist don't see a benefit from ivig till after 5 or 6 th.

Sorry, I am always rushing! Last winter, many of us KeithElizabeth, Coco, and others were intitiating monthly ivig, some kids proceeded to have bad symptoms increase with each monthly ivig. This led to some phone consults with Dr. K where he stated monthly ivig especially low dose can "stir up" the antibodies(another infamous Dr. K scientific term) So out of concern many stopped low dose monthly ivig. However some didn't(my dd, Shaesdd, melanies son, peglems dd) Now we have the lymes issue surfacing, and many of the original monthly ivig'ers are now treating for lymes. So what I am thinking is before ivig, everyone should test for lymes.

Just to clarify, in my daughter's case, she did worsen w/ 2 low dose IVIGs, 3 weeks apart. She has continued with 1.5g/kg every 4 weeks, and has had 5 of them so far. She is doing okay, but every couple of months gets a course of rifampin/augmentin when progress begins stagnating. She is pretty atypical for everything (PANDAS, life in general) so we're just staying the course with whatever seems to help.

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Sooo. Herxing from ivig is a good thing??????

Sounds very similar to our 'herxing/IVIG' experience.

 

Our Dr. will be walking us through the Herxing experience with our younger Daughter... we see him again in 9 days. Also taking an individual off antibiotics and how quickly they see a reemergence of symptoms guides them in which bacteria's to check for that individual. For example, my daughter got sick within days of stopping antibiotics and that 'apparently' is a sign of Bartonella. If my daughter had gotten sick within 3 to 4 weeks it would have pointed more towards Lyme. Bartonella 'apparently' can be transferred in-utero as well.

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Great discussion under this thread! Ihave been debating these same issues privately as well. My daughter was another monthly ivig kid not doing too well untill we finally stopped and saw improvement from waiting. It took a good 3 months to really see I'mprovement. Shortly after we checked for lyme and she was positive. I was shocked because after that last ivig she was doing really well with very mild syptoms. Adding additional antibiotics stirred her symptoms dramatically for a couple months. We even stopped all abx for a while to calm the herxing. It worked.

 

We previously had tested neg for lyme through Quest. Igenex test was positive on lyme specific bands NOT run through other labs. This is why I think it was so important for us to run tests through igenex.

One thing I think we can all agree on is pandas starts at a young age. Maybe its an immaturity in the immune system. Over time as the child ages perhaps they pick up other infections that make it more difficult to treat. Perhaps these kids symptoms would resolve as the immune system quiets and matures once all infections have been treated. At least I hope so.

 

And how DO you sort out Herxing vs. negative response? My best guess, based on what I've seen in my kids, is that Herxing (what I assume is herxing - reactions immediately after first IVIG, reactions after starting a new antibiotic that ultimately kicks the infection) is characterized more by its erratic nature. During these periods, my kids have been jekyl and hyde - great all day, then BOOM a sudden quick PANDAS punch (little as a few seconds, much as a couple of hours), then back to good. Very quick alternation between being totally normal and doing strange stuff - for as little as 4 days, as long as a couple of weeks (after first IVIG). When they were sick but untreated, it could vary some but was much more steady state.

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Kimballot: In terms of the S. Pneumo titers, I know that SF Mom's younger son's S. Pneumo titers did improve after antibiotic treatment.

 

I will let you know how my daughter's titers are when we retest in a month. I think that when you have such a chronic infection, like lyme and babesia, your body fights so hard and the bacteria is so sneaky that your body gets worn down and the IGG's even become depleted. I know that my daughter's IGG levels continued to go down and we did not know why. Her B cells were extremely low as well.

 

I have been doing a great deal of research on bacterial/viral infections and their relationship with mental illness, heart disease, cancer, etc... Doctors are now discovering that chlamydia pneumonia is related to heart disease and the HPV virus is related to cervical cancer and H. Pylori causes ulcers and stomach cancer, mycoplasma can cause schleroderma, and lyme can look like MS and Parkinsons, etc.....

 

Elizabeth

 

Thanks for the clarification... Very interesting. It makes me wonder more about my son, who did not have low titers until about 9 years of age...We just re-did my son's s. pneumoniae titers since his sinus surgery in June. It will be intersting to see if removal of that chronic infection and treatment with zith has affected his titers... I am also anxously awaiting igenex results!

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My Friend's son is positive for Bartonella and Ehrlichiosis. He also has had 3 hdIVIGs but was regressing around 8 week mark. He is now 14 weeks post his last IVIG and 9 weeks into Lyme treatment and doing extremely well, although not perfect he is trending upwards. Last spring they wanted him to repeat kindergarden for the 3rd time... This fall he is integrating just fine into 1st grade. My girlfriend does not post and only occasionally reads the forum. She has promised to come on and tell her story. She also has high liver enzymes as well as high heavy metals and will be tested for Lyme in Oct. She lives in the most Lyme intense area of CA 'Marin County'. We started investigating Lyme because of their results.... I was worried it was contagious. We've known each other since college and we grew up in MN/WI. She lived on a dairy farm and grew up with at least 20 farrow cats at any given time. Hence, Bartonella 'cat scratch fever'... and can 'apparently' be transfer in-utero.

 

 

Last time my father-in-law was visiting we discussed my friend's results and he said.... PANDAS could easily be more than one infection. We've only hinted at our investigating Lyme for family at that time. We are waiting for more confirmatory testing to discuss it with him. He was very slow in accepting PANDAS until he read a lot of the material himself. NOW, he is a huge believer. Loved the NIMH recent statement. I also think he'll be slow to accept Lyme Diagnoses unless their are concrete results. He cautioned us against steroid use all along which may have turned out to be a good thing.

 

With our older son, we are not struggling with any OCD, occasional mood liability, we had the re-emergence of TICS when we added the Alinia but they are starting to settle out. Our son had many back to back TIC free days prior to new antibiotic. Our twins do not have any OCD, TICs... Their symptoms are more physical: live reticularis, rashes, uveitis, urinary issues for my DD, immune deficiencies, were getting sick frequently prior to antibiotics (rages and OCD have resolved for my younger son).

 

IVIG can be helpful for Lyme. I would consider another IVIG treatment for our son if I felt he needed it. He has continued to improve steadily, thankfully. However, with the blood in his stool I was very fearful his body wasn't strong enough and he was fighting an infection of some type. We ruled out C Dif., E-Coli, Giardia, H-Pylori at the time.

 

 

 

 

 

 

 

 

SFmom and Mom2pandas, I am very concerned about the immune def and cancer connection, and it is why I am treating my dd with ivig. She has had 41 sinus infections, multiple pneum, low C4(7), low overall IGG(400 for 14 year old), which by the way now is the only indicator of immune defs, leading immune docs don't test subclasses anymore, they consider the data useless. So only low overall IGG's are indicator of immune def, usually seen with low IGM also. Even the pneumoccocal testing is going to be considered irrelevant soon. My dd also has incredibly high ana 2560, and high anti dopamine antibodies 4000, cam kin 165, and was in a b cell maturation study showing her b cells are attacking her body. She was first diagnosed with SC 7 years ago. WE live in Ohio not the mecca of Lyme. But low C4 and high ana are found in lymes, and yes I was diagnosed with ms. So I will go get the igenex test for myself, since my dd cannot get the test being on ivig. SFMOM, what does ur fatherinlaw think of all this lyme and congenital lyme talk. He seemed very involved with ur pandas decisions. Also if IVIG caused extreme herxing, why would that not be good and at some point u should see benefit from that???? What causes herxing from ivig? Is it killing off the bacteria? What happened to the other children that attending the playdate with the child with rheumatic fever, do they also have any Lyme? Are any still struggling with Pandas? Why is LaurenJohnsonsmom doing high dose monthly ivig on Lauren with Lyme, I guess ivig is a treatment for Lyme. And why will u not consider ivig for future treatments since ur son did so well with it? Thanks

Edited by SF Mom
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I called IGENEX and spoke with the doctor on site and he said you should wait at least 4 weeks post IVIG to do the test. I did not clarify about the possibility of having a false positive with him. Again, I would test yourself at the same time in order to help with the big picture. As an adult, I would also order the CD57 blood test (killer cells) because it is often a good indicator for adults that they may be fighting lyme if the number is less than 100.

 

Elizabeth

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SFmom and Mom2pandas, I am very concerned about the immune def and cancer connection, and it is why I am treating my dd with ivig. She has had 41 sinus infections, multiple pneum, low C4(7), low overall IGG(400 for 14 year old), which by the way now is the only indicator of immune defs, leading immune docs don't test subclasses anymore, they consider the data useless. So only low overall IGG's are indicator of immune def, usually seen with low IGM also. Even the pneumoccocal testing is going to be considered irrelevant soon. My dd also has incredibly high ana 2560, and high anti dopamine antibodies 4000, cam kin 165, and was in a b cell maturation study showing her b cells are attacking her body. She was first diagnosed with SC 7 years ago. WE live in Ohio not the mecca of Lyme. But low C4 and high ana are found in lymes, and yes I was diagnosed with ms. So I will go get the igenex test for myself, since my dd cannot get the test being on ivig. SFMOM, what does ur fatherinlaw think of all this lyme and congenital lyme talk. He seemed very involved with ur pandas decisions. Also if IVIG caused extreme herxing, why would that not be good and at some point u should see benefit from that???? What causes herxing from ivig? Is it killing off the bacteria? What happened to the other children that attending the playdate with the child with rheumatic fever, do they also have any Lyme? Are any still struggling with Pandas? Why is LaurenJohnsonsmom doing high dose monthly ivig on Lauren with Lyme, I guess ivig is a treatment for Lyme. And why will u not consider ivig for future treatments since ur son did so well with it? Thanks

I'm pretty certain Lauren is receiving high dose ivig every 8 weeks, not monthly.

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She was getting every 8 weeks, but - recall her moms last post stating she will be getting highdose evry four weeks now. I will look it up in the history.

SFmom and Mom2pandas, I am very concerned about the immune def and cancer connection, and it is why I am treating my dd with ivig. She has had 41 sinus infections, multiple pneum, low C4(7), low overall IGG(400 for 14 year old), which by the way now is the only indicator of immune defs, leading immune docs don't test subclasses anymore, they consider the data useless. So only low overall IGG's are indicator of immune def, usually seen with low IGM also. Even the pneumoccocal testing is going to be considered irrelevant soon. My dd also has incredibly high ana 2560, and high anti dopamine antibodies 4000, cam kin 165, and was in a b cell maturation study showing her b cells are attacking her body. She was first diagnosed with SC 7 years ago. WE live in Ohio not the mecca of Lyme. But low C4 and high ana are found in lymes, and yes I was diagnosed with ms. So I will go get the igenex test for myself, since my dd cannot get the test being on ivig. SFMOM, what does ur fatherinlaw think of all this lyme and congenital lyme talk. He seemed very involved with ur pandas decisions. Also if IVIG caused extreme herxing, why would that not be good and at some point u should see benefit from that???? What causes herxing from ivig? Is it killing off the bacteria? What happened to the other children that attending the playdate with the child with rheumatic fever, do they also have any Lyme? Are any still struggling with Pandas? Why is LaurenJohnsonsmom doing high dose monthly ivig on Lauren with Lyme, I guess ivig is a treatment for Lyme. And why will u not consider ivig for future treatments since ur son did so well with it? Thanks

I'm pretty certain Lauren is receiving high dose ivig every 8 weeks, not monthly.

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