Lyme, PANDAS, and one exhausted mama

[mama2alex]

I just got off the phone with our DAN doctor. He has been saying since this whole PANDAS thing blew up last summer that he is SURE my son has Lyme Disease. We ran the tests in August through IGeneX and came back with positive IgG (neg IgM) on Bartonella, ++ on band 41, and IND on bands 31, 34 and 39.

 

After having some improvement on Azith and prednisone, we treated for PANDAS with higher doses of Azith, then IVIG in December and basically ignored the Lyme stuff for a while because without a positive test, my husband didn't really buy it. Plus we were just overwhelmed by it all.

 

It took 7 weeks to really see improvement after IVIG, but then we did see him recover about 75% by 3 months post IVIG. Then it leveled off, and then last week he had a relapse. His fears started coming back, started wanting us to check for a robber again, giant meltdowns, school refusal, trouble sleeping, talk of self-harm, separation anxiety ramped back up, the whole nine yards. We upped his Azith to 500mg per day, and he is doing better, although not back to 75% and is still too anxious to go back to school.

 

We are very confused about what to do next. Dr. K has us checking strep titers - ASO is normal and we're still waiting for anti-DNase B, which is the only one that was elevated before. We're considering another IVIG.

 

BUT, here's the problem. The DAN doc is telling us we need to treat for the Lyme, even without a positive test. He says my son is showing negative because he's borderline low on IgGs. He says the treatment will be brutal - there will be a strong Herx reaction and that we will probably need to pull my son from school for 6 - 9 months. There will be a number of "side" treatments to protect against yeast, encourage and help with detoxing during die-off, etc and there will be monthly testing, so it will probably be expensive. The treatment will take up to 2 years. Even if I can get my husband on board with believing he has Lyme (I do sort of believe it), I'm not sure I can handle what he's telling me I need to endure.

 

We've never seen a tick on our son, he's never had the rash, but I had a mysterious rash about 7 years before he was born. I was not diagnosed with Lyme and didn't get sick at the time, although I became very ill after my son was born and was eventually diagnosed with mercury poisoning. I recovered partially with chelation, but have never fully regained my health. DAN doc thinks I might have had Lyme but my immune system was strong at the time, so I didn't get sick. Then maybe I passed it to my son. It might explain why we've seen many low-level issues all his life, from sensory issues to separation anxiety all along, to mild defiance and hyperactivity??

 

We tried giving him some supplements that were supposed to "kick up" the Lyme so we could test, but he had such a horrible reaction - laying on the floor screaming, saying he hates his life, refusing to do anything we ask - that we pulled him off the supplements after two days. Those behaviors went away immediately, so it does seem like it was a herx.

 

So two questions for those well-versed in Lyme:

1. Do you think he has Lyme and do you think we should go ahead with the treatment?

2. How do I survive it?? How does he survive it?

 

I am just so exhausted from having him home for 10 days, I really don't think I can handle 6 - 9 months with even worse symptoms. I'm so confused about what to do next, I would appreciate any input. I'm talking to one of the moms on this forum who has a child with Lyme next week, but wanted to get input now as well.

 

Because he's moving backward in his recovery now, we need to make some tough decisions soon.

[EAMom]

A couple of questions:

 

1) Has your son always lived in Northern CA? Where else has he lived/vacationed? Did he camp/hike etc?

 

2) Does your son have lyme symptoms (that couldn't be explained by PANDAS). For example, nerve pain, numbness, tingling of the hands/feet/back is a common lyme symptom (but not really a common PANDAS symptom). If he has these symptoms I'd be more in favor of a Lyme diagnosis/treatment.

 

re:

It might explain why we've seen many low-level issues all his life, from sensory issues to separation anxiety all along, to mild defiance and hyperactivity??

 

Lots of strictly PANDAS kids have low level issues before the PANDAS becomes "full-blown"/diagnosed...my dd had off/on anxiety, ocd, sensory stuff, defiance for years b-4 we learned about PANDAS. So, I don't think you need a Lyme diagnosis to explain chronic low level issues.

 

That Lyme treatment does sound pretty scary! Hugs!

Edited May 15, 2010 by EAMom

[T_Mom]

I know this is such a puzzle--

Someone suggested Lyme to us as well--had d tested conventional bloodwork, etc. negative...I still wonder.

 

I will say that reading your post your experience sounds alot like the saw tooth ups and downs..overtime, time, time...

 

Are you saying that with the PANDAS treatments your child improves...overall?

It took consistency and much time and treatment (abx and steroids twice) for us to see 100 % again--and only after a full year could we say she was alright again (while still continuing on full abx!!!)

 

This darn disease takes time to heal from--one thing at a time.

 

(In Germany, where my sister lives--who has been diagnosed with Lyme for years--they treat aggressively and proactively with abx. Given that it is fairly standard to do so here as well, I have felt better knowing given that our d was on full strength abx for over a year (continues to be ...) that we "are" treating lyme according to most treatment plans...

[jjk4]

I just got off the phone with our DAN doctor. He has been saying since this whole PANDAS thing blew up last summer that he is SURE my son has Lyme Disease. We ran the tests in August through IGeneX and came back with positive IgG (neg IgM) on Bartonella, ++ on band 41, and IND on bands 31, 34 and 39.

 

After having some improvement on Azith and prednisone, we treated for PANDAS with higher doses of Azith, then IVIG in December and basically ignored the Lyme stuff for a while because without a positive test, my husband didn't really buy it. Plus we were just overwhelmed by it all.

 

It took 7 weeks to really see improvement after IVIG, but then we did see him recover about 75% by 3 months post IVIG. Then it leveled off, and then last week he had a relapse. His fears started coming back, started wanting us to check for a robber again, giant meltdowns, school refusal, trouble sleeping, talk of self-harm, separation anxiety ramped back up, the whole nine yards. We upped his Azith to 500mg per day, and he is doing better, although not back to 75% and is still too anxious to go back to school.

 

We are very confused about what to do next. Dr. K has us checking strep titers - ASO is normal and we're still waiting for anti-DNase B, which is the only one that was elevated before. We're considering another IVIG.

 

BUT, here's the problem. The DAN doc is telling us we need to treat for the Lyme, even without a positive test. He says my son is showing negative because he's borderline low on IgGs. He says the treatment will be brutal - there will be a strong Herx reaction and that we will probably need to pull my son from school for 6 - 9 months. There will be a number of "side" treatments to protect against yeast, encourage and help with detoxing during die-off, etc and there will be monthly testing, so it will probably be expensive. The treatment will take up to 2 years. Even if I can get my husband on board with believing he has Lyme (I do sort of believe it), I'm not sure I can handle what he's telling me I need to endure.

 

We've never seen a tick on our son, he's never had the rash, but I had a mysterious rash about 7 years before he was born. I was not diagnosed with Lyme and didn't get sick at the time, although I became very ill after my son was born and was eventually diagnosed with mercury poisoning. I recovered partially with chelation, but have never fully regained my health. DAN doc thinks I might have had Lyme but my immune system was strong at the time, so I didn't get sick. Then maybe I passed it to my son. It might explain why we've seen many low-level issues all his life, from sensory issues to separation anxiety all along, to mild defiance and hyperactivity??

 

We tried giving him some supplements that were supposed to "kick up" the Lyme so we could test, but he had such a horrible reaction - laying on the floor screaming, saying he hates his life, refusing to do anything we ask - that we pulled him off the supplements after two days. Those behaviors went away immediately, so it does seem like it was a herx.

 

So two questions for those well-versed in Lyme:

1. Do you think he has Lyme and do you think we should go ahead with the treatment?

2. How do I survive it?? How does he survive it?

 

I am just so exhausted from having him home for 10 days, I really don't think I can handle 6 - 9 months with even worse symptoms. I'm so confused about what to do next, I would appreciate any input. I'm talking to one of the moms on this forum who has a child with Lyme next week, but wanted to get input now as well.

 

Because he's moving backward in his recovery now, we need to make some tough decisions soon.

 

Hi, first let me say how sorry I am to hear about your son's backward turn in his recovery. It is so exhausting and the idea of adding Lyme treatment to his care can seem daunting. With that said, if changing his treatment plan helps his body rid itself a bacteria that is so harmful to him....it is really worth a try. I had to face the same difficult decisions 3 months ago and it is not an easy choice.

 

The world of Lyme treatment is still new to me but I am learning quick. My dd(9) was sick June 09 and basically was not the same since. There was no tick or bite or rash... we thought it was H1N1. We were given the PANDAS diagnosis in Oct 09 and Lyme/Bartonella diagnosis in March 2010. Let me say that despite 6 months of full dose Augmentin, T&A surgery, and a gluten free diet, my daughter was ok but really only functioning at 80-90%. Now, we are 3 months into Lyme treatment and she is doing even better. Intially, she was a bit worse in mood, behavior and energy level but now she is between 90-100% on Zythromax, Bactrim (for the Bartonella), and Tindamax (weekends only). We were told that the coinfection, Bartonella, can mimic PANDAS. Also, we were told that we will need to treat for at least 2 months beyond symptom resolution. But, it is unknown long it would take for her symptoms to resolve completely.

 

So, in response to your questions:

1) Yes, this could be Lyme/Bartonella at work on his system and therefore I would try treatment. Lyme is mostly a clinical diagnosis and the blood tests are a snap shot in time showing his immune response in that moment. His IgG shows Lyme exposure at some point and should be addressed. Perhaps by doing this, future IVIG would be more beneficial as his system won't be attacked by the Lyme/Bartonella. But, I would suggest treating with an ILADS doctor who is current on the best combinations of antibiotics and can help clinically monitor response to treatment. The tracking of symptoms is really important as it helps direct clinical decision making and you want to be sure you are working with a knowledgable Lyme doctor.

2) How to survive??? I have found communicating with other parents treating for Lyme a huge help! Some of the people I have been in contact with here on this board and in the local Lyme support group in my town have provided a wealth of information and encouragement. I am cautiously optomistic about my daughter's treatment but fearful about when we start to wean her off the abx. I try to take things one day at a time and try to appreciate even the smallest of steps in the right direction.

 

For me the pay off happened recently when my daughter was getting ready to leave for school (riding by bike with her friends....WOW!) and she said "remember when I could barely get to school....glad I don't feel that way now". She left and I had tears in my eyes. So, hang in there and follow your gut instincts about what you think may help. If you have more specific questions, please PM me. Good luck.

Joanne

[mama2alex]

Thanks for your response! I was really struggling with all this yesterday. I think I'm just very tired and of course these are very tough decisions.

 

He was born and raised here, but we have done some camping and hiking on occasion since he was a baby. We've vacationed on the east coast including Rhode Island and Cape Cod. We haven't really seen symptoms that couldn't be explained by PANDAS.

 

A couple of questions:

 

1) Has your son always lived in Northern CA? Where else has he lived/vacationed? Did he camp/hike etc?

 

2) Does your son have lyme symptoms (that couldn't be explained by PANDAS). For example, nerve pain, numbness, tingling of the hands/feet/back is a common lyme symptom (but not really a common PANDAS symptom). If he has these symptoms I'd be more in favor of a Lyme diagnosis/treatment.

 

re:

It might explain why we've seen many low-level issues all his life, from sensory issues to separation anxiety all along, to mild defiance and hyperactivity??

 

Lots of strictly PANDAS kids have low level issues before the PANDAS becomes "full-blown"/diagnosed...my dd had off/on anxiety, ocd, sensory stuff, defiance for years b-4 we learned about PANDAS. So, I don't think you need a Lyme diagnosis to explain chronic low level issues.

 

That Lyme treatment does sound pretty scary! Hugs!

[mama2alex]

Thanks T.Mom. He never improved a lot with the Azith at first, but we did see some improvement. The big improvements came with prednisone and then again 7 weeks post-IVIG. This last flare-up seems to have been helped by the Azith, but we are still not back to 75%. We had completely left the "robbers" and checking for them behind, but he was worried about a robber last night and then I was up at 4am turning on lights and checking the closet. Ugh! I just don't see us moving in the right direction. He's been on the increased dose of Azith now for 10 days.

 

I think at this point we will go to the Lyme doc SF Mom recommended for a second opinion. If I have two LLMD's telling me he has Lyme, we may go ahead and try to treat.

 

I will keep you all posted. I realize it's an issue that comes up for a number of us.

 

I know this is such a puzzle--

Someone suggested Lyme to us as well--had d tested conventional bloodwork, etc. negative...I still wonder.

 

I will say that reading your post your experience sounds alot like the saw tooth ups and downs..overtime, time, time...

 

Are you saying that with the PANDAS treatments your child improves...overall?

It took consistency and much time and treatment (abx and steroids twice) for us to see 100 % again--and only after a full year could we say she was alright again (while still continuing on full abx!!!)

 

This darn disease takes time to heal from--one thing at a time.

 

(In Germany, where my sister lives--who has been diagnosed with Lyme for years--they treat aggressively and proactively with abx. Given that it is fairly standard to do so here as well, I have felt better knowing given that our d was on full strength abx for over a year (continues to be ...) that we "are" treating lyme according to most treatment plans...

[mama2alex]

Thanks for posting jjk4. I'm so glad to hear how well your daughter is doing. I suppose it's possible that the PANDAS was a misdiagnsis and it's been Bartonella all along. We did get a positive test for Bartonella in August. Maybe once we've gotten a second opinion, we'll start out by treating the Bartonella and see if he improves. If we had a positive Lyme test, I wouldn't hesitate to treat for that, but we just feel so uncomfortable treating something without real proof. We felt we had proof of PANDAS because he improved some on the Azith, then was 90-95% better after a prednisone burst, then his CamK score was 153. But I suppose all of these could have been the same with just Bartonella or maybe he has both.

 

I have to run, but will keep you all posted. THANK YOU - you are all my lifeline!

 

I just got off the phone with our DAN doctor. He has been saying since this whole PANDAS thing blew up last summer that he is SURE my son has Lyme Disease. We ran the tests in August through IGeneX and came back with positive IgG (neg IgM) on Bartonella, ++ on band 41, and IND on bands 31, 34 and 39.

 

After having some improvement on Azith and prednisone, we treated for PANDAS with higher doses of Azith, then IVIG in December and basically ignored the Lyme stuff for a while because without a positive test, my husband didn't really buy it. Plus we were just overwhelmed by it all.

 

It took 7 weeks to really see improvement after IVIG, but then we did see him recover about 75% by 3 months post IVIG. Then it leveled off, and then last week he had a relapse. His fears started coming back, started wanting us to check for a robber again, giant meltdowns, school refusal, trouble sleeping, talk of self-harm, separation anxiety ramped back up, the whole nine yards. We upped his Azith to 500mg per day, and he is doing better, although not back to 75% and is still too anxious to go back to school.

 

We are very confused about what to do next. Dr. K has us checking strep titers - ASO is normal and we're still waiting for anti-DNase B, which is the only one that was elevated before. We're considering another IVIG.

 

BUT, here's the problem. The DAN doc is telling us we need to treat for the Lyme, even without a positive test. He says my son is showing negative because he's borderline low on IgGs. He says the treatment will be brutal - there will be a strong Herx reaction and that we will probably need to pull my son from school for 6 - 9 months. There will be a number of "side" treatments to protect against yeast, encourage and help with detoxing during die-off, etc and there will be monthly testing, so it will probably be expensive. The treatment will take up to 2 years. Even if I can get my husband on board with believing he has Lyme (I do sort of believe it), I'm not sure I can handle what he's telling me I need to endure.

 

We've never seen a tick on our son, he's never had the rash, but I had a mysterious rash about 7 years before he was born. I was not diagnosed with Lyme and didn't get sick at the time, although I became very ill after my son was born and was eventually diagnosed with mercury poisoning. I recovered partially with chelation, but have never fully regained my health. DAN doc thinks I might have had Lyme but my immune system was strong at the time, so I didn't get sick. Then maybe I passed it to my son. It might explain why we've seen many low-level issues all his life, from sensory issues to separation anxiety all along, to mild defiance and hyperactivity??

 

We tried giving him some supplements that were supposed to "kick up" the Lyme so we could test, but he had such a horrible reaction - laying on the floor screaming, saying he hates his life, refusing to do anything we ask - that we pulled him off the supplements after two days. Those behaviors went away immediately, so it does seem like it was a herx.

 

So two questions for those well-versed in Lyme:

1. Do you think he has Lyme and do you think we should go ahead with the treatment?

2. How do I survive it?? How does he survive it?

 

I am just so exhausted from having him home for 10 days, I really don't think I can handle 6 - 9 months with even worse symptoms. I'm so confused about what to do next, I would appreciate any input. I'm talking to one of the moms on this forum who has a child with Lyme next week, but wanted to get input now as well.

 

Because he's moving backward in his recovery now, we need to make some tough decisions soon.

 

Hi, first let me say how sorry I am to hear about your son's backward turn in his recovery. It is so exhausting and the idea of adding Lyme treatment to his care can seem daunting. With that said, if changing his treatment plan helps his body rid itself a bacteria that is so harmful to him....it is really worth a try. I had to face the same difficult decisions 3 months ago and it is not an easy choice.

 

The world of Lyme treatment is still new to me but I am learning quick. My dd(9) was sick June 09 and basically was not the same since. There was no tick or bite or rash... we thought it was H1N1. We were given the PANDAS diagnosis in Oct 09 and Lyme/Bartonella diagnosis in March 2010. Let me say that despite 6 months of full dose Augmentin, T&A surgery, and a gluten free diet, my daughter was ok but really only functioning at 80-90%. Now, we are 3 months into Lyme treatment and she is doing even better. Intially, she was a bit worse in mood, behavior and energy level but now she is between 90-100% on Zythromax, Bactrim (for the Bartonella), and Tindamax (weekends only). We were told that the coinfection, Bartonella, can mimic PANDAS. Also, we were told that we will need to treat for at least 2 months beyond symptom resolution. But, it is unknown long it would take for her symptoms to resolve completely.

 

So, in response to your questions:

1) Yes, this could be Lyme/Bartonella at work on his system and therefore I would try treatment. Lyme is mostly a clinical diagnosis and the blood tests are a snap shot in time showing his immune response in that moment. His IgG shows Lyme exposure at some point and should be addressed. Perhaps by doing this, future IVIG would be more beneficial as his system won't be attacked by the Lyme/Bartonella. But, I would suggest treating with an ILADS doctor who is current on the best combinations of antibiotics and can help clinically monitor response to treatment. The tracking of symptoms is really important as it helps direct clinical decision making and you want to be sure you are working with a knowledgable Lyme doctor.

2) How to survive??? I have found communicating with other parents treating for Lyme a huge help! Some of the people I have been in contact with here on this board and in the local Lyme support group in my town have provided a wealth of information and encouragement. I am cautiously optomistic about my daughter's treatment but fearful about when we start to wean her off the abx. I try to take things one day at a time and try to appreciate even the smallest of steps in the right direction.

 

For me the pay off happened recently when my daughter was getting ready to leave for school (riding by bike with her friends....WOW!) and she said "remember when I could barely get to school....glad I don't feel that way now". She left and I had tears in my eyes. So, hang in there and follow your gut instincts about what you think may help. If you have more specific questions, please PM me. Good luck.

Joanne

[smartyjones]

We haven't really seen symptoms that couldn't be explained by PANDAS.

 

 

just to chime in . . . my son had pretty classic pandas symptoms - although not officially diagnosed b/c he's never had an official ocd diagnosis - a bit silly - we found pandas earlier than that. however, he didn't have anything that wasn't easily pandas either. he had strong strep indicators - high titers, positive culture, 100% initial improvement with abx. had no other 'typical' lyme symptoms. he had non-reactive western blot last june ('09). in jan, i thought he should be showing more of a healing path and asked one dr if we should investigate lyme again. he recommended another dr who diagnosed him with lyme.

 

that's all 9 weeks ago. i'm not sure what i think b/c it's likely a long road of treatment. he's more or less the same but i do think i see an improvement in inappropriate upsets.

 

so - my opinion would be to follow up on investigating if lyme is involved. i think many of our kids can have multiple infections. so for my son, i believe it's not a misdiagnosis of pandas but maybe wasn't a complete diagnosis of pitand multiple causes.

 

good luck and know that you are not alone!

Edited May 15, 2010 by smartyjones

[lyme_mom]

I just got off the phone with our DAN doctor. He has been saying since this whole PANDAS thing blew up last summer that he is SURE my son has Lyme Disease. We ran the tests in August through IGeneX and came back with positive IgG (neg IgM) on Bartonella, ++ on band 41, and IND on bands 31, 34 and 39.

 

After having some improvement on Azith and prednisone, we treated for PANDAS with higher doses of Azith, then IVIG in December and basically ignored the Lyme stuff for a while because without a positive test, my husband didn't really buy it. Plus we were just overwhelmed by it all.

 

It took 7 weeks to really see improvement after IVIG, but then we did see him recover about 75% by 3 months post IVIG. Then it leveled off, and then last week he had a relapse. His fears started coming back, started wanting us to check for a robber again, giant meltdowns, school refusal, trouble sleeping, talk of self-harm, separation anxiety ramped back up, the whole nine yards. We upped his Azith to 500mg per day, and he is doing better, although not back to 75% and is still too anxious to go back to school.

 

We are very confused about what to do next. Dr. K has us checking strep titers - ASO is normal and we're still waiting for anti-DNase B, which is the only one that was elevated before. We're considering another IVIG.

 

BUT, here's the problem. The DAN doc is telling us we need to treat for the Lyme, even without a positive test. He says my son is showing negative because he's borderline low on IgGs. He says the treatment will be brutal - there will be a strong Herx reaction and that we will probably need to pull my son from school for 6 - 9 months. There will be a number of "side" treatments to protect against yeast, encourage and help with detoxing during die-off, etc and there will be monthly testing, so it will probably be expensive. The treatment will take up to 2 years. Even if I can get my husband on board with believing he has Lyme (I do sort of believe it), I'm not sure I can handle what he's telling me I need to endure.

 

We've never seen a tick on our son, he's never had the rash, but I had a mysterious rash about 7 years before he was born. I was not diagnosed with Lyme and didn't get sick at the time, although I became very ill after my son was born and was eventually diagnosed with mercury poisoning. I recovered partially with chelation, but have never fully regained my health. DAN doc thinks I might have had Lyme but my immune system was strong at the time, so I didn't get sick. Then maybe I passed it to my son. It might explain why we've seen many low-level issues all his life, from sensory issues to separation anxiety all along, to mild defiance and hyperactivity??

 

We tried giving him some supplements that were supposed to "kick up" the Lyme so we could test, but he had such a horrible reaction - laying on the floor screaming, saying he hates his life, refusing to do anything we ask - that we pulled him off the supplements after two days. Those behaviors went away immediately, so it does seem like it was a herx.

 

So two questions for those well-versed in Lyme:

1. Do you think he has Lyme and do you think we should go ahead with the treatment?

2. How do I survive it?? How does he survive it?

 

I am just so exhausted from having him home for 10 days, I really don't think I can handle 6 - 9 months with even worse symptoms. I'm so confused about what to do next, I would appreciate any input. I'm talking to one of the moms on this forum who has a child with Lyme next week, but wanted to get input now as well.

 

Because he's moving backward in his recovery now, we need to make some tough decisions soon.

 

Even though the Igenex test was technically negative a llmd would interpret it as positive as your DAN! doctor has. The presence of indeterminate bands for 31, 34 and 39 is extremely significant. This means that there was something there on the test for three of the most important lyme bands (but the something was not a thick band (more like a pencil mark). This is not the same thing as a negative result. These are lyme-specific antibodies that do not show up unless you have been exposed to lyme disease. Band 31 only shows up after a person has been exposed to lyme over a year so band 31 is REALLY significant. I think it is clear that your son has lyme, especially since he has lyme symptoms and a positive Bartonella test (which is a tick borne illness that often comes with lyme). Your DAN! doctor is absolutely right to treat. You have more to lose by not treating b/c the lyme will continue to multiply in his body without the proper treatment and make him sicker eventually. Bartonella is a really serious infection that should be treated asap. Some llmds say it is more difficult to treat than Lyme. I would not fear the treatment but would fear not treating it. The consequences are just too dangerous and the longer you wait the harder it will be to get rid of. I am not trying to scare you but I would absolutely get him to a llmd for treatment soon. Have you seen the movie under our skin? Here is a link to a good trailer for the movie

. Not everybody gets bad herxes when you treat lyme and a good llmd will be careful not to have your son herx too much at once so do not be afraid of the treatment. My kids have been treated for lyme/bartonella and babesia for a while and even though it is not a pleasant experience it is also not incapacitating nor is it a certainty that your son will be out of school for that long. With a lyme treatment you will see a lot of improvement as you go along even though there will be some very bad days. You will also have many good days too, probably much better than you are seeing now. There are holistic things you can do to help the body detox the dead lyme toxins, etc. which will minimize the herxes. This does cost a lot of money but getting the right treatment can save a child's life. I would avoid steroids b/c of his likely lyme disease/bartonella. Getting on the right combo of drugs for the bartonella and lyme could have an immediate positive effect on your son.

You will know once you start treatment if you are on the right track b/c there will be important signs. My llmd said that herxes (die off reactions) are only caused by spirochetal infections like syphilis and lyme so if he gets a herx it will mean you are on the right track. Dr J in CT will take calls from other doctors seeking advice on interpreting test results or symptoms. Your DAN! doctor could call him and ask him what his opinion is. He is a great man and will help any doctor learn about lyme. That might help you decide to treat. I am absolutely positive that he would say you should treat your son for lyme and bartonella. LLMDS always err on the side of treating if they suspect lyme b/c not treating is too risky. I look at those test results like this: where there is smoke, there is usually fire.

[MichaelTampa]

mama2alex,

 

So many people get diagnosed with lyme with a much more "negative" looking IGeneX test than your son. I had band 41 positive and band 39 IND and the rest negative, and also negative for lyme, bartonella, and rickettsia. Yet my LLMD diagnosed me with lyme and bartonella. It is just very common to not look full-blown positive before treatment. I am only 2.5 weeks in to lyme treatment, so nothing too much exciting to report, but I'm sure I'm on the right track. I also had a very high CamK (183 I think), and experienced some improvement with antibiotics for PANDAS, but it was very limiting, so I'm much further along with lyme treatment now.

 

Sorry if the treatment for lyme seems overwhelming, but it really looks like that's what it is. Agree an ILADS MD might arrange the best plan. There are plenty of things you can do in the supplement category to really help the treatment work better. It would be very useful to read the "treatment and diagnostic hints" available from the ILADS website, lots of helpful advice there on supplements near the end of the document.

 

One last thought for now, if you can afford it, unless you are just overwhelmingly healthy, you might also consider getting a western blot for yourself.

 

Michael

[mama2alex]

Thanks! I will call next week. Hoping, hoping ds will go to school Monday.

 

I just got off the phone with our DAN doctor. He has been saying since this whole PANDAS thing blew up last summer that he is SURE my son has Lyme Disease. We ran the tests in August through IGeneX and came back with positive IgG (neg IgM) on Bartonella, ++ on band 41, and IND on bands 31, 34 and 39.

 

After having some improvement on Azith and prednisone, we treated for PANDAS with higher doses of Azith, then IVIG in December and basically ignored the Lyme stuff for a while because without a positive test, my husband didn't really buy it. Plus we were just overwhelmed by it all.

 

It took 7 weeks to really see improvement after IVIG, but then we did see him recover about 75% by 3 months post IVIG. Then it leveled off, and then last week he had a relapse. His fears started coming back, started wanting us to check for a robber again, giant meltdowns, school refusal, trouble sleeping, talk of self-harm, separation anxiety ramped back up, the whole nine yards. We upped his Azith to 500mg per day, and he is doing better, although not back to 75% and is still too anxious to go back to school.

 

We are very confused about what to do next. Dr. K has us checking strep titers - ASO is normal and we're still waiting for anti-DNase B, which is the only one that was elevated before. We're considering another IVIG.

 

BUT, here's the problem. The DAN doc is telling us we need to treat for the Lyme, even without a positive test. He says my son is showing negative because he's borderline low on IgGs. He says the treatment will be brutal - there will be a strong Herx reaction and that we will probably need to pull my son from school for 6 - 9 months. There will be a number of "side" treatments to protect against yeast, encourage and help with detoxing during die-off, etc and there will be monthly testing, so it will probably be expensive. The treatment will take up to 2 years. Even if I can get my husband on board with believing he has Lyme (I do sort of believe it), I'm not sure I can handle what he's telling me I need to endure.

 

We've never seen a tick on our son, he's never had the rash, but I had a mysterious rash about 7 years before he was born. I was not diagnosed with Lyme and didn't get sick at the time, although I became very ill after my son was born and was eventually diagnosed with mercury poisoning. I recovered partially with chelation, but have never fully regained my health. DAN doc thinks I might have had Lyme but my immune system was strong at the time, so I didn't get sick. Then maybe I passed it to my son. It might explain why we've seen many low-level issues all his life, from sensory issues to separation anxiety all along, to mild defiance and hyperactivity??

 

We tried giving him some supplements that were supposed to "kick up" the Lyme so we could test, but he had such a horrible reaction - laying on the floor screaming, saying he hates his life, refusing to do anything we ask - that we pulled him off the supplements after two days. Those behaviors went away immediately, so it does seem like it was a herx.

 

So two questions for those well-versed in Lyme:

1. Do you think he has Lyme and do you think we should go ahead with the treatment?

2. How do I survive it?? How does he survive it?

 

I am just so exhausted from having him home for 10 days, I really don't think I can handle 6 - 9 months with even worse symptoms. I'm so confused about what to do next, I would appreciate any input. I'm talking to one of the moms on this forum who has a child with Lyme next week, but wanted to get input now as well.

 

Because he's moving backward in his recovery now, we need to make some tough decisions soon.

 

Even though the Igenex test was technically negative a llmd would interpret it as positive as your DAN! doctor has. The presence of indeterminate bands for 31, 34 and 39 is extremely significant. This means that there was something there on the test for three of the most important lyme bands (but the something was not a thick band (more like a pencil mark). This is not the same thing as a negative result. These are lyme-specific antibodies that do not show up unless you have been exposed to lyme disease. Band 31 only shows up after a person has been exposed to lyme over a year so band 31 is REALLY significant. I think it is clear that your son has lyme, especially since he has lyme symptoms and a positive Bartonella test (which is a tick borne illness that often comes with lyme). Your DAN! doctor is absolutely right to treat. You have more to lose by not treating b/c the lyme will continue to multiply in his body without the proper treatment and make him sicker eventually. Bartonella is a really serious infection that should be treated asap. Some llmds say it is more difficult to treat than Lyme. I would not fear the treatment but would fear not treating it. The consequences are just too dangerous and the longer you wait the harder it will be to get rid of. I am not trying to scare you but I would absolutely get him to a llmd for treatment soon. Have you seen the movie under our skin? Here is a link to a good trailer for the movie

. Not everybody gets bad herxes when you treat lyme and a good llmd will be careful not to have your son herx too much at once so do not be afraid of the treatment. My kids have been treated for lyme/bartonella and babesia for a while and even though it is not a pleasant experience it is also not incapacitating nor is it a certainty that your son will be out of school for that long. With a lyme treatment you will see a lot of improvement as you go along even though there will be some very bad days. You will also have many good days too, probably much better than you are seeing now. There are holistic things you can do to help the body detox the dead lyme toxins, etc. which will minimize the herxes. This does cost a lot of money but getting the right treatment can save a child's life. I would avoid steroids b/c of his likely lyme disease/bartonella. Getting on the right combo of drugs for the bartonella and lyme could have an immediate positive effect on your son.

You will know once you start treatment if you are on the right track b/c there will be important signs. My llmd said that herxes (die off reactions) are only caused by spirochetal infections like syphilis and lyme so if he gets a herx it will mean you are on the right track. Dr J in CT will take calls from other doctors seeking advice on interpreting test results or symptoms. Your DAN! doctor could call him and ask him what his opinion is. He is a great man and will help any doctor learn about lyme. That might help you decide to treat. I am absolutely positive that he would say you should treat your son for lyme and bartonella. LLMDS always err on the side of treating if they suspect lyme b/c not treating is too risky. I look at those test results like this: where there is smoke, there is usually fire.

[mama2alex]

Thanks so much to everyone for calls, PMs and responses on the thread!! I feel so lucky to be part of this group!

 

By the way, our DAN doc is ILADs trained (or certified or whatever they call it). Maybe we are just dense or something, but it's so hard to see the right path from where we're sitting!

 

All the input has been tremendously helpful.

[lyme_mom]

Thanks! I will call next week. Hoping, hoping ds will go to school Monday.

 

I just got off the phone with our DAN doctor. He has been saying since this whole PANDAS thing blew up last summer that he is SURE my son has Lyme Disease. We ran the tests in August through IGeneX and came back with positive IgG (neg IgM) on Bartonella, ++ on band 41, and IND on bands 31, 34 and 39.

 

After having some improvement on Azith and prednisone, we treated for PANDAS with higher doses of Azith, then IVIG in December and basically ignored the Lyme stuff for a while because without a positive test, my husband didn't really buy it. Plus we were just overwhelmed by it all.

 

It took 7 weeks to really see improvement after IVIG, but then we did see him recover about 75% by 3 months post IVIG. Then it leveled off, and then last week he had a relapse. His fears started coming back, started wanting us to check for a robber again, giant meltdowns, school refusal, trouble sleeping, talk of self-harm, separation anxiety ramped back up, the whole nine yards. We upped his Azith to 500mg per day, and he is doing better, although not back to 75% and is still too anxious to go back to school.

 

We are very confused about what to do next. Dr. K has us checking strep titers - ASO is normal and we're still waiting for anti-DNase B, which is the only one that was elevated before. We're considering another IVIG.

 

BUT, here's the problem. The DAN doc is telling us we need to treat for the Lyme, even without a positive test. He says my son is showing negative because he's borderline low on IgGs. He says the treatment will be brutal - there will be a strong Herx reaction and that we will probably need to pull my son from school for 6 - 9 months. There will be a number of "side" treatments to protect against yeast, encourage and help with detoxing during die-off, etc and there will be monthly testing, so it will probably be expensive. The treatment will take up to 2 years. Even if I can get my husband on board with believing he has Lyme (I do sort of believe it), I'm not sure I can handle what he's telling me I need to endure.

 

We've never seen a tick on our son, he's never had the rash, but I had a mysterious rash about 7 years before he was born. I was not diagnosed with Lyme and didn't get sick at the time, although I became very ill after my son was born and was eventually diagnosed with mercury poisoning. I recovered partially with chelation, but have never fully regained my health. DAN doc thinks I might have had Lyme but my immune system was strong at the time, so I didn't get sick. Then maybe I passed it to my son. It might explain why we've seen many low-level issues all his life, from sensory issues to separation anxiety all along, to mild defiance and hyperactivity??

 

We tried giving him some supplements that were supposed to "kick up" the Lyme so we could test, but he had such a horrible reaction - laying on the floor screaming, saying he hates his life, refusing to do anything we ask - that we pulled him off the supplements after two days. Those behaviors went away immediately, so it does seem like it was a herx.

 

So two questions for those well-versed in Lyme:

1. Do you think he has Lyme and do you think we should go ahead with the treatment?

2. How do I survive it?? How does he survive it?

 

I am just so exhausted from having him home for 10 days, I really don't think I can handle 6 - 9 months with even worse symptoms. I'm so confused about what to do next, I would appreciate any input. I'm talking to one of the moms on this forum who has a child with Lyme next week, but wanted to get input now as well.

 

Because he's moving backward in his recovery now, we need to make some tough decisions soon.

 

Even though the Igenex test was technically negative a llmd would interpret it as positive as your DAN! doctor has. The presence of indeterminate bands for 31, 34 and 39 is extremely significant. This means that there was something there on the test for three of the most important lyme bands (but the something was not a thick band (more like a pencil mark). This is not the same thing as a negative result. These are lyme-specific antibodies that do not show up unless you have been exposed to lyme disease. Band 31 only shows up after a person has been exposed to lyme over a year so band 31 is REALLY significant. I think it is clear that your son has lyme, especially since he has lyme symptoms and a positive Bartonella test (which is a tick borne illness that often comes with lyme). Your DAN! doctor is absolutely right to treat. You have more to lose by not treating b/c the lyme will continue to multiply in his body without the proper treatment and make him sicker eventually. Bartonella is a really serious infection that should be treated asap. Some llmds say it is more difficult to treat than Lyme. I would not fear the treatment but would fear not treating it. The consequences are just too dangerous and the longer you wait the harder it will be to get rid of. I am not trying to scare you but I would absolutely get him to a llmd for treatment soon. Have you seen the movie under our skin? Here is a link to a good trailer for the movie

. Not everybody gets bad herxes when you treat lyme and a good llmd will be careful not to have your son herx too much at once so do not be afraid of the treatment. My kids have been treated for lyme/bartonella and babesia for a while and even though it is not a pleasant experience it is also not incapacitating nor is it a certainty that your son will be out of school for that long. With a lyme treatment you will see a lot of improvement as you go along even though there will be some very bad days. You will also have many good days too, probably much better than you are seeing now. There are holistic things you can do to help the body detox the dead lyme toxins, etc. which will minimize the herxes. This does cost a lot of money but getting the right treatment can save a child's life. I would avoid steroids b/c of his likely lyme disease/bartonella. Getting on the right combo of drugs for the bartonella and lyme could have an immediate positive effect on your son.

You will know once you start treatment if you are on the right track b/c there will be important signs. My llmd said that herxes (die off reactions) are only caused by spirochetal infections like syphilis and lyme so if he gets a herx it will mean you are on the right track. Dr J in CT will take calls from other doctors seeking advice on interpreting test results or symptoms. Your DAN! doctor could call him and ask him what his opinion is. He is a great man and will help any doctor learn about lyme. That might help you decide to treat. I am absolutely positive that he would say you should treat your son for lyme and bartonella. LLMDS always err on the side of treating if they suspect lyme b/c not treating is too risky. I look at those test results like this: where there is smoke, there is usually fire.

Michael is right about getting tested yourself. It is so common for mother and child to have lyme. There is an easy and fairly reliable screening test for lyme in adults called the cd57 test. A depressed score is an indication of an active lyme infection (a score under 60 is most likely lyme, under 100 very suspicious for lyme). Insurance covers it. Get the labcorp cd57. Igenex offers a band 31 confirmation test as a follow up to a western blot that has an equivocal result like your son's. We did it and the indeterminate band 31 was considered positive. There is a fee for this (i think 125 or something like that) but it might be the evidence you are looking for. I do not think it is necessary b/c his result is suggestive enough for lyme but it might make you feel better to know for sure if his results is consistent with a positive result.

[mama2alex]

Thanks! This is a great suggestion. I was tested a few years back when I had headaches non-stop for a month, but it was negative and I think my DAN doc was just starting to learn how to treat Lyme, so we dropped it. Also, I found that if I didn't eat wheat, I didn't have the headache, so I thought I'd figured it out. I will ask him about the CD57.

 

Thanks! I will call next week. Hoping, hoping ds will go to school Monday.

 

I just got off the phone with our DAN doctor. He has been saying since this whole PANDAS thing blew up last summer that he is SURE my son has Lyme Disease. We ran the tests in August through IGeneX and came back with positive IgG (neg IgM) on Bartonella, ++ on band 41, and IND on bands 31, 34 and 39.

 

After having some improvement on Azith and prednisone, we treated for PANDAS with higher doses of Azith, then IVIG in December and basically ignored the Lyme stuff for a while because without a positive test, my husband didn't really buy it. Plus we were just overwhelmed by it all.

 

It took 7 weeks to really see improvement after IVIG, but then we did see him recover about 75% by 3 months post IVIG. Then it leveled off, and then last week he had a relapse. His fears started coming back, started wanting us to check for a robber again, giant meltdowns, school refusal, trouble sleeping, talk of self-harm, separation anxiety ramped back up, the whole nine yards. We upped his Azith to 500mg per day, and he is doing better, although not back to 75% and is still too anxious to go back to school.

 

We are very confused about what to do next. Dr. K has us checking strep titers - ASO is normal and we're still waiting for anti-DNase B, which is the only one that was elevated before. We're considering another IVIG.

 

BUT, here's the problem. The DAN doc is telling us we need to treat for the Lyme, even without a positive test. He says my son is showing negative because he's borderline low on IgGs. He says the treatment will be brutal - there will be a strong Herx reaction and that we will probably need to pull my son from school for 6 - 9 months. There will be a number of "side" treatments to protect against yeast, encourage and help with detoxing during die-off, etc and there will be monthly testing, so it will probably be expensive. The treatment will take up to 2 years. Even if I can get my husband on board with believing he has Lyme (I do sort of believe it), I'm not sure I can handle what he's telling me I need to endure.

 

We've never seen a tick on our son, he's never had the rash, but I had a mysterious rash about 7 years before he was born. I was not diagnosed with Lyme and didn't get sick at the time, although I became very ill after my son was born and was eventually diagnosed with mercury poisoning. I recovered partially with chelation, but have never fully regained my health. DAN doc thinks I might have had Lyme but my immune system was strong at the time, so I didn't get sick. Then maybe I passed it to my son. It might explain why we've seen many low-level issues all his life, from sensory issues to separation anxiety all along, to mild defiance and hyperactivity??

 

We tried giving him some supplements that were supposed to "kick up" the Lyme so we could test, but he had such a horrible reaction - laying on the floor screaming, saying he hates his life, refusing to do anything we ask - that we pulled him off the supplements after two days. Those behaviors went away immediately, so it does seem like it was a herx.

 

So two questions for those well-versed in Lyme:

1. Do you think he has Lyme and do you think we should go ahead with the treatment?

2. How do I survive it?? How does he survive it?

 

I am just so exhausted from having him home for 10 days, I really don't think I can handle 6 - 9 months with even worse symptoms. I'm so confused about what to do next, I would appreciate any input. I'm talking to one of the moms on this forum who has a child with Lyme next week, but wanted to get input now as well.

 

Because he's moving backward in his recovery now, we need to make some tough decisions soon.

 

Even though the Igenex test was technically negative a llmd would interpret it as positive as your DAN! doctor has. The presence of indeterminate bands for 31, 34 and 39 is extremely significant. This means that there was something there on the test for three of the most important lyme bands (but the something was not a thick band (more like a pencil mark). This is not the same thing as a negative result. These are lyme-specific antibodies that do not show up unless you have been exposed to lyme disease. Band 31 only shows up after a person has been exposed to lyme over a year so band 31 is REALLY significant. I think it is clear that your son has lyme, especially since he has lyme symptoms and a positive Bartonella test (which is a tick borne illness that often comes with lyme). Your DAN! doctor is absolutely right to treat. You have more to lose by not treating b/c the lyme will continue to multiply in his body without the proper treatment and make him sicker eventually. Bartonella is a really serious infection that should be treated asap. Some llmds say it is more difficult to treat than Lyme. I would not fear the treatment but would fear not treating it. The consequences are just too dangerous and the longer you wait the harder it will be to get rid of. I am not trying to scare you but I would absolutely get him to a llmd for treatment soon. Have you seen the movie under our skin? Here is a link to a good trailer for the movie

. Not everybody gets bad herxes when you treat lyme and a good llmd will be careful not to have your son herx too much at once so do not be afraid of the treatment. My kids have been treated for lyme/bartonella and babesia for a while and even though it is not a pleasant experience it is also not incapacitating nor is it a certainty that your son will be out of school for that long. With a lyme treatment you will see a lot of improvement as you go along even though there will be some very bad days. You will also have many good days too, probably much better than you are seeing now. There are holistic things you can do to help the body detox the dead lyme toxins, etc. which will minimize the herxes. This does cost a lot of money but getting the right treatment can save a child's life. I would avoid steroids b/c of his likely lyme disease/bartonella. Getting on the right combo of drugs for the bartonella and lyme could have an immediate positive effect on your son.

You will know once you start treatment if you are on the right track b/c there will be important signs. My llmd said that herxes (die off reactions) are only caused by spirochetal infections like syphilis and lyme so if he gets a herx it will mean you are on the right track. Dr J in CT will take calls from other doctors seeking advice on interpreting test results or symptoms. Your DAN! doctor could call him and ask him what his opinion is. He is a great man and will help any doctor learn about lyme. That might help you decide to treat. I am absolutely positive that he would say you should treat your son for lyme and bartonella. LLMDS always err on the side of treating if they suspect lyme b/c not treating is too risky. I look at those test results like this: where there is smoke, there is usually fire.

Michael is right about getting tested yourself. It is so common for mother and child to have lyme. There is an easy and fairly reliable screening test for lyme in adults called the cd57 test. A depressed score is an indication of an active lyme infection (a score under 60 is most likely lyme, under 100 very suspicious for lyme). Insurance covers it. Get the labcorp cd57. Igenex offers a band 31 confirmation test as a follow up to a western blot that has an equivocal result like your son's. We did it and the indeterminate band 31 was considered positive. There is a fee for this (i think 125 or something like that) but it might be the evidence you are looking for. I do not think it is necessary b/c his result is suggestive enough for lyme but it might make you feel better to know for sure if his results is consistent with a positive result.

[faith]

mama2alex,

 

So many people get diagnosed with lyme with a much more "negative" looking IGeneX test than your son. I had band 41 positive and band 39 IND and the rest negative, and also negative for lyme, bartonella, and rickettsia. Yet my LLMD diagnosed me with lyme and bartonella. It is just very common to not look full-blown positive before treatment. I am only 2.5 weeks in to lyme treatment, so nothing too much exciting to report, but I'm sure I'm on the right track. I also had a very high CamK (183 I think), and experienced some improvement with antibiotics for PANDAS, but it was very limiting, so I'm much further along with lyme treatment now.

 

Sorry if the treatment for lyme seems overwhelming, but it really looks like that's what it is. Agree an ILADS MD might arrange the best plan. There are plenty of things you can do in the supplement category to really help the treatment work better. It would be very useful to read the "treatment and diagnostic hints" available from the ILADS website, lots of helpful advice there on supplements near the end of the document.

 

One last thought for now, if you can afford it, unless you are just overwhelmingly healthy, you might also consider getting a western blot for yourself.

 

Michael

 

Michael,

what is the treatment that you are doing now, what abx? Is this different than the clarith for myco p.? how did that wound up turning out? did dr.k. say anything about that .. or this?