so I'm reading all these posts, including the other boards

[kferricks]

First of all, I'm sorry that I don' t answer many posts here. The truth is because I dont really know most answers or how to respond to many topics that touch my heart. (But I read them all and say a silent prayer)

 

Second, what other kinds of doctors are you working with? I only have a Pandas doc. I have a family doc who is interested (wants to be kept up to date) but is unwilling to help.

 

3rd, What is C3D Immune complex and what does it mean? I tried looking it up on line?

 

4th, Can someone please help me understand this? M.PNEUMONIAE AB (IGG) EIA 3.09 (H)? Does this mean she has myco p.? Does this mean she should take the Western Blot test? she had the other one done.

 

My dd did well with the prednisone, and he kept her on the same dose of omnicef. He said that if she was'nt cloe to 100% by out next visit this month that we would have to consider IVIG. But after reading many different posts on here, well I'm worried. Is it the right way to go? While she has kinda improved a little since last month, I've also discovered new OCD. Though/vision ocd. She is definately not 100% maybe 60 (barely).

 

Can I just have some others thoughts? suggestions? I can't sleep.

[LNN]

Second, what other kinds of doctors are you working with? I only have a Pandas doc. I have a family doc who is interested (wants to be kept up to date) but is unwilling to help.

 

We tried a number of doctors, but the local ones were not at all helpful. We've successfully worked with two Pandas specialists and each has contributed to our knowledge and helped bring our son one step closer to health. But eventually, my son looked "treatment resistant" - something was still keeping him sick despite aggressive treatments - and we then discovered lyme and co-infections. So now we primarily work with an LLMD but I still consider the Pandas doctors as part of our team (we just don't need them for current treatment).

 

3rd, What is C3D Immune complex and what does it mean? I tried looking it up on line?

 

I couldn't find much online either. So what I'm about to explain may be completely incorrect but it helps me get my brain around it...When there's an antigen (an infectious agent) in the body, and the body isn't doing a good job of killing that antigen, one defense mechanism of the immune system is to produce immune complexes. These complexes are like sticky blobs that can bind to the antigen and immobilize it. (If you ever saw the movie The Incredibles, think of when Mr Incredible gets caught in Syndrome's secret office and gets bombarded with sticky tar balls until he can't move). The complexes don't kill the antigen - they just immobilize it. If you have high C3D complexes, it's a sign that you have some sort of chronic infection that isn't being killed. If you start treatment with the right antibiotics (and this is only my understanding - I could be way wrong) then eventually the antigens that are bound up in sticky complexes get released and killed and the C3D levels go down. Someone please correct me if I've gotten it wrong.

 

4th, Can someone please help me understand this? M.PNEUMONIAE AB (IGG) EIA 3.09 (H)? Does this mean she has myco p.? Does this mean she should take the Western Blot test? she had the other one done.

 

M.PNEUMONIAE AB - this stands for Mycoplasma Pneumoniae antibodies (a measurement of whether the body was exposed to this antigen and produced antibodies to try to kill it)

 

IGG - this is one of 5 types of immunoglobulin protiens (IgG, IgM, IgE, IgA and IgD) IgM is generally a sign of current or recent infection. IgG is a measurement of some previous exposure but not necessarily current infection. (again, I'm no expert on this)

 

don't know what EIA means

 

3.09 (H) means the measurement of this antibody was 3.09 and is considered a high/above normal result for this lab.

 

I'm not familiar with a western blot for M. Pneumonia. Are you confusing this with lyme/Igenex? Mycoplasma is a different infection. It can sometimes be carried by ticks, but it can also be spread in other ways. But this lab result doesn't have anything to do with a lyme test.

 

My dd did well with the prednisone, and he kept her on the same dose of omnicef. He said that if she was'nt cloe to 100% by out next visit this month that we would have to consider IVIG. But after reading many different posts on here, well I'm worried. Is it the right way to go? While she has kinda improved a little since last month, I've also discovered new OCD. Though/vision ocd. She is definately not 100% maybe 60 (barely).

 

Can I just have some others thoughts? suggestions? I can't sleep.

 

None of us here will know your daughter's full medical story and none of us are doctors. So take this as my opinion only. I can't know if IVIG would benefit your daughter. But my personal experience is contrary to this. Just because a child doesn't respond/get to 100% on one anitbiotic does not mean IVIG has to be the next step. I think you need to be sure of what is keeping your daughter sick. If it's a Pandas reaction to strep and there's no strep left, then maybe IVIG makes sense as the next step. But if the trigger is Mycoplasma or different infection, and the source of the infection hasn't been eradicated, then my impression is that IVIG may help but won't be the entire answer. If it were me, I'd probably keep looking for additional tests or different types of antibiotics before IVIG. But again, I don't know the full medical story and am certainly no doctor.

 

Best of luck in your struggles. I know all you want is to help your daughter. I hope others can chime in with more info for you.

[lyme_mom]

Second, what other kinds of doctors are you working with? I only have a Pandas doc. I have a family doc who is interested (wants to be kept up to date) but is unwilling to help.

 

We tried a number of doctors, but the local ones were not at all helpful. We've successfully worked with two Pandas specialists and each has contributed to our knowledge and helped bring our son one step closer to health. But eventually, my son looked "treatment resistant" - something was still keeping him sick despite aggressive treatments - and we then discovered lyme and co-infections. So now we primarily work with an LLMD but I still consider the Pandas doctors as part of our team (we just don't need them for current treatment).

 

3rd, What is C3D Immune complex and what does it mean? I tried looking it up on line?

 

I couldn't find much online either. So what I'm about to explain may be completely incorrect but it helps me get my brain around it...When there's an antigen (an infectious agent) in the body, and the body isn't doing a good job of killing that antigen, one defense mechanism of the immune system is to produce immune complexes. These complexes are like sticky blobs that can bind to the antigen and immobilize it. (If you ever saw the movie The Incredibles, think of when Mr Incredible gets caught in Syndrome's secret office and gets bombarded with sticky tar balls until he can't move). The complexes don't kill the antigen - they just immobilize it. If you have high C3D complexes, it's a sign that you have some sort of chronic infection that isn't being killed. If you start treatment with the right antibiotics (and this is only my understanding - I could be way wrong) then eventually the antigens that are bound up in sticky complexes get released and killed and the C3D levels go down. Someone please correct me if I've gotten it wrong.

 

4th, Can someone please help me understand this? M.PNEUMONIAE AB (IGG) EIA 3.09 (H)? Does this mean she has myco p.? Does this mean she should take the Western Blot test? she had the other one done.

 

M.PNEUMONIAE AB - this stands for Mycoplasma Pneumoniae antibodies (a measurement of whether the body was exposed to this antigen and produced antibodies to try to kill it)

 

IGG - this is one of 5 types of immunoglobulin protiens (IgG, IgM, IgE, IgA and IgD) IgM is generally a sign of current or recent infection. IgG is a measurement of some previous exposure but not necessarily current infection. (again, I'm no expert on this)

 

don't know what EIA means

 

3.09 (H) means the measurement of this antibody was 3.09 and is considered a high/above normal result for this lab.

 

I'm not familiar with a western blot for M. Pneumonia. Are you confusing this with lyme/Igenex? Mycoplasma is a different infection. It can sometimes be carried by ticks, but it can also be spread in other ways. But this lab result doesn't have anything to do with a lyme test.

 

My dd did well with the prednisone, and he kept her on the same dose of omnicef. He said that if she was'nt cloe to 100% by out next visit this month that we would have to consider IVIG. But after reading many different posts on here, well I'm worried. Is it the right way to go? While she has kinda improved a little since last month, I've also discovered new OCD. Though/vision ocd. She is definately not 100% maybe 60 (barely).

 

Can I just have some others thoughts? suggestions? I can't sleep.

 

None of us here will know your daughter's full medical story and none of us are doctors. So take this as my opinion only. I can't know if IVIG would benefit your daughter. But my personal experience is contrary to this. Just because a child doesn't respond/get to 100% on one anitbiotic does not mean IVIG has to be the next step. I think you need to be sure of what is keeping your daughter sick. If it's a Pandas reaction to strep and there's no strep left, then maybe IVIG makes sense as the next step. But if the trigger is Mycoplasma or different infection, and the source of the infection hasn't been eradicated, then my impression is that IVIG may help but won't be the entire answer. If it were me, I'd probably keep looking for additional tests or different types of antibiotics before IVIG. But again, I don't know the full medical story and am certainly no doctor.

 

Best of luck in your struggles. I know all you want is to help your daughter. I hope others can chime in with more info for you.

I agree with this. I would exhaust all other options first and go see a lyme literate medical doctor (from ilads list) to see if they can recommend the right combo of antibiotics that will get your child well first.LLMDs are experts at treating the multiply infected patient, not just lyme patients. Giving your child an infusion of a pooled blood product is not something I would undertake unless it is the very last option. I have a lot of concern about the safety of IVIG (just as I would any kind of infusion of a blood product) b/c I don't think you can be sure that your child won't get an infection from the IVIG. It is a pooled blood product and there is no way to test for all these possible bugs (lyme, babesia, etc. b/c testing is not completely reliable) but pooling blood from so many people must certainly increase the odds that you will get some blood that has issues. I am sure that some will vehemently disagree with this but I would not risk it unless you have exhausted all other options outside of the traditional pandas treatment. I know someone who called the manufacturer of one of the ivig products b/c her child was about to get an ivig and was told that they do not test it for lyme. She was told that a lot of doctors do not even believe lyme exists. That is not reassuring. I have not investigated it myself but I certainly would do so if I thought this was going to be the only thing that would help my child. I think so many of these kids just need the right combo of antibiotics to get well and you have to go outside of the PANDAS doctors to get fully checked out. Most PANDAS doctors are not trained in the diagnosis and treatment of tick borne diseases so you can't rely on them to rule these things out. There are many stories from "PANDAS" parents on the lyme board indicating that they saw true healing with the right lyme/strep treatment, not with the ivig.I know it is a difficult decision and good luck with it.

[eljomom]

LLM--great replies! I agree about trying to dig deeper, and that is where I am getting stuck---trying to figure out who to see to have more tests done to dig deeper. Did either of your pandas docs do that? I'm afraid to go to local I.D. doc, or local immunologist, although it would be helpful to not have to travel. I don't know if they would do the tests I want, etc....do any of the pandas docs test for underlying infections? OUrs does not. You can PM me if you want...

 

Second, what other kinds of doctors are you working with? I only have a Pandas doc. I have a family doc who is interested (wants to be kept up to date) but is unwilling to help.

 

We tried a number of doctors, but the local ones were not at all helpful. We've successfully worked with two Pandas specialists and each has contributed to our knowledge and helped bring our son one step closer to health. But eventually, my son looked "treatment resistant" - something was still keeping him sick despite aggressive treatments - and we then discovered lyme and co-infections. So now we primarily work with an LLMD but I still consider the Pandas doctors as part of our team (we just don't need them for current treatment).

 

3rd, What is C3D Immune complex and what does it mean? I tried looking it up on line?

 

I couldn't find much online either. So what I'm about to explain may be completely incorrect but it helps me get my brain around it...When there's an antigen (an infectious agent) in the body, and the body isn't doing a good job of killing that antigen, one defense mechanism of the immune system is to produce immune complexes. These complexes are like sticky blobs that can bind to the antigen and immobilize it. (If you ever saw the movie The Incredibles, think of when Mr Incredible gets caught in Syndrome's secret office and gets bombarded with sticky tar balls until he can't move). The complexes don't kill the antigen - they just immobilize it. If you have high C3D complexes, it's a sign that you have some sort of chronic infection that isn't being killed. If you start treatment with the right antibiotics (and this is only my understanding - I could be way wrong) then eventually the antigens that are bound up in sticky complexes get released and killed and the C3D levels go down. Someone please correct me if I've gotten it wrong.

 

4th, Can someone please help me understand this? M.PNEUMONIAE AB (IGG) EIA 3.09 (H)? Does this mean she has myco p.? Does this mean she should take the Western Blot test? she had the other one done.

 

M.PNEUMONIAE AB - this stands for Mycoplasma Pneumoniae antibodies (a measurement of whether the body was exposed to this antigen and produced antibodies to try to kill it)

 

IGG - this is one of 5 types of immunoglobulin protiens (IgG, IgM, IgE, IgA and IgD) IgM is generally a sign of current or recent infection. IgG is a measurement of some previous exposure but not necessarily current infection. (again, I'm no expert on this)

 

don't know what EIA means

 

3.09 (H) means the measurement of this antibody was 3.09 and is considered a high/above normal result for this lab.

 

I'm not familiar with a western blot for M. Pneumonia. Are you confusing this with lyme/Igenex? Mycoplasma is a different infection. It can sometimes be carried by ticks, but it can also be spread in other ways. But this lab result doesn't have anything to do with a lyme test.

 

My dd did well with the prednisone, and he kept her on the same dose of omnicef. He said that if she was'nt cloe to 100% by out next visit this month that we would have to consider IVIG. But after reading many different posts on here, well I'm worried. Is it the right way to go? While she has kinda improved a little since last month, I've also discovered new OCD. Though/vision ocd. She is definately not 100% maybe 60 (barely).

 

Can I just have some others thoughts? suggestions? I can't sleep.

 

None of us here will know your daughter's full medical story and none of us are doctors. So take this as my opinion only. I can't know if IVIG would benefit your daughter. But my personal experience is contrary to this. Just because a child doesn't respond/get to 100% on one anitbiotic does not mean IVIG has to be the next step. I think you need to be sure of what is keeping your daughter sick. If it's a Pandas reaction to strep and there's no strep left, then maybe IVIG makes sense as the next step. But if the trigger is Mycoplasma or different infection, and the source of the infection hasn't been eradicated, then my impression is that IVIG may help but won't be the entire answer. If it were me, I'd probably keep looking for additional tests or different types of antibiotics before IVIG. But again, I don't know the full medical story and am certainly no doctor.

 

Best of luck in your struggles. I know all you want is to help your daughter. I hope others can chime in with more info for you.

[eljomom]

Lyme mom---I appreaciate your explanation too, and I sort of go back and forth on this. But with all due respect, and I ONLY ask because I am trying to understand it all....

IF pandas/pitand is and AUTOIMMUNE disorder, then why would antibiotics be the answer??? If it's gone "autoimmune" from what I understand, there doesn't even need to be a current infection?? Isn't it the inflammation from the autoimmune disorder causing the issues?? Unless the abx are just an anti-inflammatory, still not getting it...

 

Second, what other kinds of doctors are you working with? I only have a Pandas doc. I have a family doc who is interested (wants to be kept up to date) but is unwilling to help.

 

We tried a number of doctors, but the local ones were not at all helpful. We've successfully worked with two Pandas specialists and each has contributed to our knowledge and helped bring our son one step closer to health. But eventually, my son looked "treatment resistant" - something was still keeping him sick despite aggressive treatments - and we then discovered lyme and co-infections. So now we primarily work with an LLMD but I still consider the Pandas doctors as part of our team (we just don't need them for current treatment).

 

3rd, What is C3D Immune complex and what does it mean? I tried looking it up on line?

 

I couldn't find much online either. So what I'm about to explain may be completely incorrect but it helps me get my brain around it...When there's an antigen (an infectious agent) in the body, and the body isn't doing a good job of killing that antigen, one defense mechanism of the immune system is to produce immune complexes. These complexes are like sticky blobs that can bind to the antigen and immobilize it. (If you ever saw the movie The Incredibles, think of when Mr Incredible gets caught in Syndrome's secret office and gets bombarded with sticky tar balls until he can't move). The complexes don't kill the antigen - they just immobilize it. If you have high C3D complexes, it's a sign that you have some sort of chronic infection that isn't being killed. If you start treatment with the right antibiotics (and this is only my understanding - I could be way wrong) then eventually the antigens that are bound up in sticky complexes get released and killed and the C3D levels go down. Someone please correct me if I've gotten it wrong.

 

4th, Can someone please help me understand this? M.PNEUMONIAE AB (IGG) EIA 3.09 (H)? Does this mean she has myco p.? Does this mean she should take the Western Blot test? she had the other one done.

 

M.PNEUMONIAE AB - this stands for Mycoplasma Pneumoniae antibodies (a measurement of whether the body was exposed to this antigen and produced antibodies to try to kill it)

 

IGG - this is one of 5 types of immunoglobulin protiens (IgG, IgM, IgE, IgA and IgD) IgM is generally a sign of current or recent infection. IgG is a measurement of some previous exposure but not necessarily current infection. (again, I'm no expert on this)

 

don't know what EIA means

 

3.09 (H) means the measurement of this antibody was 3.09 and is considered a high/above normal result for this lab.

 

I'm not familiar with a western blot for M. Pneumonia. Are you confusing this with lyme/Igenex? Mycoplasma is a different infection. It can sometimes be carried by ticks, but it can also be spread in other ways. But this lab result doesn't have anything to do with a lyme test.

 

My dd did well with the prednisone, and he kept her on the same dose of omnicef. He said that if she was'nt cloe to 100% by out next visit this month that we would have to consider IVIG. But after reading many different posts on here, well I'm worried. Is it the right way to go? While she has kinda improved a little since last month, I've also discovered new OCD. Though/vision ocd. She is definately not 100% maybe 60 (barely).

 

Can I just have some others thoughts? suggestions? I can't sleep.

 

None of us here will know your daughter's full medical story and none of us are doctors. So take this as my opinion only. I can't know if IVIG would benefit your daughter. But my personal experience is contrary to this. Just because a child doesn't respond/get to 100% on one anitbiotic does not mean IVIG has to be the next step. I think you need to be sure of what is keeping your daughter sick. If it's a Pandas reaction to strep and there's no strep left, then maybe IVIG makes sense as the next step. But if the trigger is Mycoplasma or different infection, and the source of the infection hasn't been eradicated, then my impression is that IVIG may help but won't be the entire answer. If it were me, I'd probably keep looking for additional tests or different types of antibiotics before IVIG. But again, I don't know the full medical story and am certainly no doctor.

 

Best of luck in your struggles. I know all you want is to help your daughter. I hope others can chime in with more info for you.

I agree with this. I would exhaust all other options first and go see a lyme literate medical doctor (from ilads list) to see if they can recommend the right combo of antibiotics that will get your child well first.LLMDs are experts at treating the multiply infected patient, not just lyme patients. Giving your child an infusion of a pooled blood product is not something I would undertake unless it is the very last option. I have a lot of concern about the safety of IVIG (just as I would any kind of infusion of a blood product) b/c I don't think you can be sure that your child won't get an infection from the IVIG. It is a pooled blood product and there is no way to test for all these possible bugs (lyme, babesia, etc. b/c testing is not completely reliable) but pooling blood from so many people must certainly increase the odds that you will get some blood that has issues. I am sure that some will vehemently disagree with this but I would not risk it unless you have exhausted all other options outside of the traditional pandas treatment. I know someone who called the manufacturer of one of the ivig products b/c her child was about to get an ivig and was told that they do not test it for lyme. She was told that a lot of doctors do not even believe lyme exists. That is not reassuring. I have not investigated it myself but I certainly would do so if I thought this was going to be the only thing that would help my child. I think so many of these kids just need the right combo of antibiotics to get well and you have to go outside of the PANDAS doctors to get fully checked out. Most PANDAS doctors are not trained in the diagnosis and treatment of tick borne diseases so you can't rely on them to rule these things out. There are many stories from "PANDAS" parents on the lyme board indicating that they saw true healing with the right lyme/strep treatment, not with the ivig.I know it is a difficult decision and good luck with it.

[cfamily]

We too are at a place where one of our docs wants us to do an IVIG. We are holding off until we take every other problem off the table. (Lyme, co infections) A couple of wonderful parents on this forum referred me to an LLMD in Stevensville, MD. He has given us the most hope at this point. Mainly because he has taken the time, to uncover the whole picture, heavy metal hair testing, bloodwork, all sorts of things.

 

We have discovered that in addition to PANDAS her CaM Kinase test came in at 181 (which is pretty high), our dd10 has:

 

Low CD57 41 and the only reason that is low is if you have hiv or lyme (I'm not by any means an authority but this is what we have learned from internet research and the lyme forums)

Low vit D 20

High levels Magnesium

Other abnornal things in the bloodwork

 

We have to meet with him next week to talk about all the results.

 

Here is my current approach:

 

Find the infection that is preventing dd from healing and get rid of it, stay on an anti-inflammatory diet no gluten,dairy or sugar. See where we are with pandas symptoms after we get this current problem under control.

 

My husband and I just got our blood drawn to check our ASO Strep titers to make absolutely sure we are not carriers.

 

Our Pediatrician just doesn't have the knowledge but is able to do rapid strep tests and order titer tests for us.

We see a psychologist to help manage the anxiety, ocd, panic, (food contamination, getting sick) We are homebound

We see a Psychiatrist at chop (only for insurance reasons to get them to add the psychologist to our in network insurance plan) She wanted to send our dd to Rogers inpatient hospital in wisconsin for round the clock exposure therapy!!!!!!!!!!!!!!!!! Yeah, that will really solve our problem..........

We see a Physicians assistant in Edison, NJ that works for a DAN Doctor who has two sons with PANDAS and Autism (Did CaM Kinase tests and other bloodwork to look for immune deficiencies)

Most Recently, the LLMD in Stevensville, MD (full range of tests, hair, heavy metals, lyme, etc)

 

We wouldn't be anywhere with out this forum and all the wonderful parents. I had an internet conversation with DR K in Chicago but I have felt that the PA in Edison, was following basically the same protocol that all the big PANDAS docs were. We live in the philadelphia suburbs and there were big waiting lists for DR. B, DR. L at the time we called was not taking new patients and we felt like we needed to act right away. I don't know what other doctors we will wind up seeing but this is our journey so far.

 

Hope this helps and like you I am not as good at replying to posts mainly because I just don't feel like I really know what I'm talking about. PM me if you want any info.

[LNN]

I agree about trying to dig deeper, and that is where I am getting stuck---trying to figure out who to see to have more tests done to dig deeper. ..do any of the pandas docs test for underlying infections?

When I look back at my own journey, I can't point to one single doctor who did all the testing or had all the answers. It was more like a scavenger hunt, or peeling an onion.

 

Our neurologist was able to give us the neuro exam and found choriform movements and had good insight into our Cunningham results - plus the Pandas treatments that matched our comfort zone and gave us significant remissions (just not permanent ones).

 

Our immunologist helped us rule out mycoplasma and gave us important information with C3D complexes and ordered our Igenex tests(which helped our LLMD see that indeterminate Igenex lyme bands would probably be positives if not for the high C3D levels).

 

Our LLMD helped by knowing the right combo of abx and the right balance of supplements/detox so that lyme treatment could be successful without making DS feel like he'd been run over by a bus.

 

Each doctor was with us for part of the journey. Each is still on the team - just on the bench/on standby except for the LLMD while we treat the lyme stuff and see what, if anything, is left after that.

 

But no single doctor is driving. I don't hide anything from them. They all know we see other doctors and they all know what the kids are taking. But I don't think there's any doctor who can be fully knowledgeable in all the areas that affect our kids. I'd be suspicious of any doctor who made that claim. We train doctors to only specialize in only small pieces of the body or specific diseases. Or we train them to be generalists, with no expertise in any one area. So the journey is about finding a clue, following it, then looking for more clues down more paths until we get our kids back. Some kids will get lucky and find lasting health right away, other cases will be more complex. I used to come to this forum looking for "the" answer and "the" doctor. Now I just come looking for ideas and support but with an expectation that my answers will be specific to my kids, not any sort of universal truth.

Edited February 5, 2011 by LLM

[kimballot]

Shadowtails - I am wondering, too, about the recommendation for IVIG if one antibiotic did not work. You say your daughter did well on prednisone and I am wondering what you mean by that, since prednisone does calm down autoimmune responses. Did you see lots of improvement at the end of the prednisone? Did it last?

 

I think it is important to clear any infection, to the best of your ability, before going on for IVIG. Your daughter has had at least some exposure to mycoplasma in the past, given her IGG level. As LLM mentioned - the IGM will be a better indicator of a more recent infection. If your daughter has mycoplasma she may do better on a different antibiotic, like azythromycin or biaxin.

 

I am surprised that your doctor would recommend IVIG without trying different antibiotics first. Many people have had good results with a lyme doctor - if you are looking for another doctor to add to your team.

 

Also, you do not mention your child's immune status. Has the doctor checked for immune deficiencies? If she has immune deficiencies then she may need IVIG to help with those.

 

Every child on this forum is different and it is so difficult to piece things together.

[kferricks]

She did wonderfull on the pred. and that has lasted but she has not moved forward since. and like I said, has managed to add some new ocd. I thought he would try another antibiotic also. I am planning on asking about that and the myco p. But according to her lab work the IGG is high but the IGM is low at 258. When we showed up, he was able to find strep right up her nose, and her titers were high. That particular step is gone but she could still have it else where.

What bothered me is that DH IGG is also a low High, but his IGM is extreemly low at 78 But my IGG is 2.16 and my IGM is 653 which is negative but a high negative. and my DH DNASE -B anitbody is even higher than my DD.

 

He was able to show us that DD immune system is very deficient. Only a couple markers make antibodies and the ones that do are very low.

 

All these words, doctors, tests, I'm just trying to make more sense of it to myself. It can be so confusing. Expecially when you hear of others with different antibiotics etc.

 

I don't think she has lyme. All the test said is Lyme Disease, EIA w/REFL WB less than .91 negative.

[kimballot]

Yes.. it is all very confusing and can be very overwhelming.

 

When you tell us about the IgG and IgM numbers it is hard for me to understand because I don't have the reference range (normal range - it should be on the sheet from the lab), and that varies depending on the lab.

 

I think I recall you posting once before about the doctor seeing strep up your daughter's nose. I don't think I've heard of that before and I am wondering if he said that he saw an infection in her nose and it may be strep.

 

It sounds like your daughter was high in mycoplasma IgG, indicating that she has been exposed to it in the past, but she was low in IgM, indicating that there was not a recent infection at the time the blood was drawn. However, that could change. For example, if the blood was drawn before she was on prednisone and she contracted mycoplasma after the prednisone, then the mycoplasma could cause the increase in OCD. I hope that makes sense. Maybe the doctor would consider checking mycoplasma again - and you can see if it is higher or lower than last time.

 

It also sounds like your daughter was low in antibodies. That may be why the doctor is recommending IVIG so soon - more for the immune deficient piece than the PANDAS piece. IVIG is often used for kids who are immune deficient to help them to fight infections. But... it does carry risks - like the risk of there being an infection in the transfusion - so it is something that you need to consider carefully. The idea behind IVIG with kids who are immune deficient is that it will help them to fight infections so they don't go into PANDAS exacerbations so much.

 

The part about lyme disease is also something you have to consider. I am not sure what you did for lyme testing, but the regular ELISA and Western Blot tests that most labs do are not as sensitive as the Igenex test that many people talk about on the forum. The Igenex test is expensive and not always conclusive either. Some people just go straight to a lyme doctor for help to see if the antibiotics they use can get rid of the infection and remove the PANDAS symptoms so they do not have to do IVIG. Some people say that kids who do well with prednisone probably do not have lyme... but then others have had kids who did well with prednisone and DID end up having lyme.

 

At the very least, I would talk with the doctor about the standstill you are at and ask about ALL the options that are available and if s/he is willing to try another antibiotic.

[kferricks]

. Some people just go straight to a lyme doctor for help to see if the antibiotics they use can get rid of the infection and remove the PANDAS symptoms so they do not have to do IVIG. Some people say that kids who do well with prednisone probably do not have lyme... but then others have had kids who did well with prednisone and DID end up having lyme.

 

Are you saying ppl go to Lyme doctors even if they don't think thier children have lyme? Or do they suspect lyme, then go and get further testing?

 

plz bare with me...lol Just want to make sure I have this straight.

[kimballot]

. Some people just go straight to a lyme doctor for help to see if the antibiotics they use can get rid of the infection and remove the PANDAS symptoms so they do not have to do IVIG. Some people say that kids who do well with prednisone probably do not have lyme... but then others have had kids who did well with prednisone and DID end up having lyme.

 

Are you saying ppl go to Lyme doctors even if they don't think thier children have lyme? Or do they suspect lyme, then go and get further testing?

 

plz bare with me...lol Just want to make sure I have this straight.

 

 

First off, let me tell you that I am not a lyme expert and can only tell you what I have learned from the folks on the forum and through other reading. Second, I will tell you that there seems to be very strong opinions about the role of lyme with PANDAS, so I am sure others will chime in and comment on this post.

 

Once a child has PANDAS/PITAND s/he can have exacerbations with any infection or inflammation. It does not have to be strep. Some other common infections are mycoplasma, lyme, and sinus infections.

 

They can test for strep with throat cultures, ASO titers, and DNASE B titers. They are not perfect and some kids do not test positive even though they have strep... but they are a decent start.

 

They can test for mycoplasma with IgM and IgG titers to see if the body is making antibodies to myoplasma. You won't see these levels rise immediately after infection, but within a week or two you should see these rise. If you keep following them you will see them continue to rise and then fall (IgM will fall) as the infection goes away. This is pretty clear and I've not heard people talk about mycoplasma titers being false.

 

They can test for sinus infections with an examination by a doctor and with xrays and MRIs and CT scans. They won't know exactly what the bacteria or fungus is in the sinuses, but they will know if there is an infection.

 

Now lyme is a different story. From my understanding, when someone gets bitten by a tick there are MANY different germs that can be passed on to the person. The thing that most people call "lyme" is just one type of spirochete. There are also many "co infections" (other bugs) that can enter the system. These lyme and coinfections are tricky because they can hide in the tissues and they can make little cysts (like cocoons) to hide from antibiotics. If they are hiding, then the immune system does not know they are there and it does not make antibodies to fight them. If it is not making antibodies, then when we do the blood test to look for the antibodies - we will not see any antibodies.

 

Of course this makes everything very complicated, and means that the tests are not great. So, some people get the regular Elisa and Western Blot tests that their insurance pays for to see if it is positive. If those are positive it is a quick start to treating lyme. Some people get the more expensive igenex tests - which look for more coinfections and are more sensitive - if those are positive, then they usually move on to treat lyme.

 

Sometimes the tests are negative but the person still has symptoms that look like lyme. In that case, they may go to a lyme doctor anyway and the lyme doctor can use different antibiotics to try to break up the cysts and look for lyme some more.

 

Some people on the forum have children who used antibiotics and did very well, and they have been happy with this treatment.

 

Some people on the forum have children who did not see as much improvement as they thought possible with antibiotics, and they tried IVIG and were happy with the results.

 

Some people on the forum have children who did not see as much improvement as they thought possible with IVIG and they tried lyme doctors and have been happy with the results.

 

Some people have suspected lyme based on their child's symptoms and have tried a lyme doctor before IVIG - even without a positive lyme test and they have been happy with the results....

 

and some people who have been to lyme doctors have stated that lyme doctors are really experts in multiple infections (since lyme is not just one infection) and they often recommend families start with a lyme doctor.

 

So... you will probably get a variety of opinions on here and they can be very overwhelming.

 

It sounds like your daughter has generally made improvements so far, but you'd like to see a little more improvement and the OCD has increased a bit recently. It might be safest to start by talking to your doctor about another antibiotic and you can then read more about IVIG and lyme and decide what to do next.

 

I hope that was not information overload.

Edited February 6, 2011 by kimballot

[LNN]

Your response made me laugh...some people do X and are happy with the results. Some people do the opposite and are happy with the results...how sadly true!

 

When I joined this forum 2 yrs ago, I think we all felt that there was one disease, one path to health and all we needed to do was get to one of a half dozen doctors and we could beat this thing. Now, I pity the new members who have to jump into this whirlpool and learn not just about Pandas but also about lyme, mycoplasma, and on and on...

 

Shadowtails - to answer your question - yes, some people go to an LLMD (lyme literate doctor) to investigate things other than lyme. My son is Pandas/lyme but my daughter has something going on but we're not sure what. So we're working with the LLMD to investigate possibilities. You can work with a DAN in a similar manner even without autism. I think these doctors' "claim to fame" is mostly that they specialize in areas that have no clear-cut answers. They're used to being in a medical maze, with dead ends and obstacles. So along the way, they've developed a broader perspective and are less married to any particular protocol. They suspect many triggers, not just one. But that doesn't guarantee they have all the answers either. At best, you end up working with one or more doctors who try to help you unravel your child's particular issues.

 

It can be very confusing and you find yourself trying to understand research papers and medical jargon that are way over your head. Along the way, you also part ways with a lot of cash you had planned to use for things like college and retirement and mortgage payments. You're far from alone in feeling like you're groping in the dark and going broke in the process.

 

When I get really bogged down, it helps me to make lists - what I know, what I wonder about, what I've ruled out, etc. I usually find that this generates a list of questions, with some lines of questioning looking more promising than others. Then I head to the doctor with my binder of charts and notes and questions and take another baby step - hopefully forward not backward.

 

It sounds like the lyme test you did was not Igenex and that may be something to put on your list of questions. You may also want to revisit mycoplasma and strep titers. Keep digging, keep questioning your doctor. If you find your child isn't responding the way you think they should, consider adding another doctor to the team. No one will have all the answers and you won't be "cheating" on the first doctor by adding a second.

 

Kimballot - one theoretical question for you about titers...I know that having high C3D levels can give you a false negative for lyme b/c the lyme antibodies get bound up. Do you think the same thing could happen with strep or myco titers? You know how many of us say our kids don't produce elevated strep titers despite confirmed strep? Maybe we tested at the wrong time, or maybe the kids are immunodeficient. But could it be that their strep antibodies are bound up in C3D complexes and just don't show up? Why would it only be true for lyme? Just thinking out loud, one geek to another....

[kimballot]

Your response made me laugh...some people do X and are happy with the results. Some people do the opposite and are happy with the results...how sadly true!

 

When I joined this forum 2 yrs ago, I think we all felt that there was one disease, one path to health and all we needed to do was get to one of a half dozen doctors and we could beat this thing. Now, I pity the new members who have to jump into this whirlpool and learn not just about Pandas but also about lyme, mycoplasma, and on and on...

 

Shadowtails - to answer your question - yes, some people go to an LLMD (lyme literate doctor) to investigate things other than lyme. My son is Pandas/lyme but my daughter has something going on but we're not sure what. So we're working with the LLMD to investigate possibilities. You can work with a DAN in a similar manner even without autism. I think these doctors' "claim to fame" is mostly that they specialize in areas that have no clear-cut answers. They're used to being in a medical maze, with dead ends and obstacles. So along the way, they've developed a broader perspective and are less married to any particular protocol. They suspect many triggers, not just one. But that doesn't guarantee they have all the answers either. At best, you end up working with one or more doctors who try to help you unravel your child's particular issues.

 

It can be very confusing and you find yourself trying to understand research papers and medical jargon that are way over your head. Along the way, you also part ways with a lot of cash you had planned to use for things like college and retirement and mortgage payments. You're far from alone in feeling like you're groping in the dark and going broke in the process.

 

When I get really bogged down, it helps me to make lists - what I know, what I wonder about, what I've ruled out, etc. I usually find that this generates a list of questions, with some lines of questioning looking more promising than others. Then I head to the doctor with my binder of charts and notes and questions and take another baby step - hopefully forward not backward.

 

It sounds like the lyme test you did was not Igenex and that may be something to put on your list of questions. You may also want to revisit mycoplasma and strep titers. Keep digging, keep questioning your doctor. If you find your child isn't responding the way you think they should, consider adding another doctor to the team. No one will have all the answers and you won't be "cheating" on the first doctor by adding a second.

 

Kimballot - one theoretical question for you about titers...I know that having high C3D levels can give you a false negative for lyme b/c the lyme antibodies get bound up. Do you think the same thing could happen with strep or myco titers? You know how many of us say our kids don't produce elevated strep titers despite confirmed strep? Maybe we tested at the wrong time, or maybe the kids are immunodeficient. But could it be that their strep antibodies are bound up in C3D complexes and just don't show up? Why would it only be true for lyme? Just thinking out loud, one geek to another....

 

LLM - Hmmm... interesting question and I wish I knew enough about the immune system to answer it! I am just starting to understand this whole C3D idea. Perhaps someone with an immune background on the forum can help with that. I will let you know if I come across anything though.

 

Shadowtails - I re read your initial post. I just want to thank you for any silent prayers that may have come my way or may have been sent out to the group as a whole. I think silent prayers and positive thinking is why the forum has evolved from trying to find "THE" answer to understanding that there are many answers and they are as unique as each of our children.

[kferricks]

You guys are great! Thank you so much. I read all these posts, but often am not sure that I completely understand. Thank you for clearing a bunch of stuff up for me.

 

I do plan on requestioning about the myco-p, and asking to try another antibiotic first. Then I may research local lyme or dan doctors in the area, expecially if I don't see any more progress. At least this is great food for thought.