Gastrointestinal Lyme

[JGsmom]

My 12.5 DS (G), is being treated for strong possibility of GI lyme. His LLMD ( Dr. J) started him out on zithromax 250mg twice a day, Omnicef 300mg once perday and Tindamax 125mg twice a day on weekends only.

DS's symptoms have been severe GERD stomach aches mostly at night, but the abx have made him much worse--so much so that I had to back off and only give him one dose of zith daily for the last week and a half ( we've only started tx approx 2 weeks ago) and the taste of the half tablet of the Tinda 250 made him gag, want to puke, so I put the half tab in a charcoal capsule that I had emptied out, which worked. I also only gave him one day of Tinda per our LLMD.

 

He had severe GERD and polyarthralgia in December of '09 with serological evidence of Lyme by Lifespan ( Quest) Labs which was treated fairly successfully with one month of Amoxacillin at that time ( we were not Lyme literate then) He was fine for one year and then the GERD symptoms started creeping slowly back in over this past year. In the meantime, his fraternal twin, (DS-J), had been dx'd with PANDAS by Dr. B who tested him for Lyme and subsequently neurologic Lyme symptoms appeared and we became more Lyme literate, so that when DS- G became very bad and did not fully recuperate from what appeared to be a 24 hour stomach virus, I asked the ped -doc to test for Lyme at IgeneX. Came back indeterminate, but I brought him to our LLMD.

 

LLMD feels DS-G is having a herx--I am not convinced. DS-G refuses to eat, he says food makes him worse. He is already a skinny kid--80 lbs. It is hard to watch him in so much pain and I try to get him to take the abx with food, but he refuses. He takes the meds, but won't eat. He begs me everyday to take him off the abx. Every day is different, so it is hard to say if he is improving, or if it is a herx,or, is he just not able to tolerate the zithromax. I am afraid to add in the extra dose of zith in the a.m. as he won't eat in the morning at all until around 11 am. On weekends, that's OK but during the week he is at camp and that's a problem. The zith seems to bother him much more than the omnicef.

 

I was wondering if anyone else has a child with GI Lyme or anyone has the same problem or does anyone have any suggestions that would be greatly appreciated.

 

Terry

[momaine]

I can't relate but I did want to tell you that while nausea isn't a common herx symtpom, it is listed on Dr. J's site as a herx symptom and it is one symptom that I have following Flagyl. It is getting less and less of a problem each week, so if he can stick to the regiment, as much as possible, it should ease with time, if it is a herx.

 

Nausea is a tough symptom to live with. Mine is accompanied with severe fatigue, which is sort of a blessing, since I tend to sleep it off. And initially nerve pain which is almost completely gone 5 or 6 weeks later.

 

It's kind of a catch 22 position to be in, you have to feel HORRIBLE in order to get better. Tell him to hang in there.

[JGsmom]

I can't relate but I did want to tell you that while nausea isn't a common herx symtpom, it is listed on Dr. J's site as a herx symptom and it is one symptom that I have following Flagyl. It is getting less and less of a problem each week, so if he can stick to the regiment, as much as possible, it should ease with time, if it is a herx.

 

Nausea is a tough symptom to live with. Mine is accompanied with severe fatigue, which is sort of a blessing, since I tend to sleep it off. And initially nerve pain which is almost completely gone 5 or 6 weeks later.

 

It's kind of a catch 22 position to be in, you have to feel HORRIBLE in order to get better. Tell him to hang in there.

 

 

Thanks--we understand he has to live through if it is a herx, but my concern is it may not be a herx. He is not having nausea. He has a severe stomach ache--worse at night--I guess I will call it severe heartburn, He also gets very bad gas pains and abdominal pains. Dr. J's office said the herx could last a couple of weeks and it has been that. So how long do I wait before calling and asking to be switched? he's not getting the full dose now, as it is.

 

Thanks.

[michiganpandas]

could all of the stomach pains be anxiety? i don't know a lot about herx symptoms, but that would bother me to give something that seems to make things worse. so sorry your son is going through all of this and also sorry for the stress of not knowing what causes what....hope it's getting better today.

[lyme_mom]

I can't relate but I did want to tell you that while nausea isn't a common herx symtpom, it is listed on Dr. J's site as a herx symptom and it is one symptom that I have following Flagyl. It is getting less and less of a problem each week, so if he can stick to the regiment, as much as possible, it should ease with time, if it is a herx.

 

Nausea is a tough symptom to live with. Mine is accompanied with severe fatigue, which is sort of a blessing, since I tend to sleep it off. And initially nerve pain which is almost completely gone 5 or 6 weeks later.

 

It's kind of a catch 22 position to be in, you have to feel HORRIBLE in order to get better. Tell him to hang in there.

 

 

Thanks--we understand he has to live through if it is a herx, but my concern is it may not be a herx. He is not having nausea. He has a severe stomach ache--worse at night--I guess I will call it severe heartburn, He also gets very bad gas pains and abdominal pains. Dr. J's office said the herx could last a couple of weeks and it has been that. So how long do I wait before calling and asking to be switched? he's not getting the full dose now, as it is.

 

Thanks.

 

Terry,

So sorry that you are going through this. You are in great hands w Dr J....have you told them about your son's lack of eating while taking the medicine? One thing they advised me to do during treatment when i was in a similar position worrying if my son was herxing or just getting worse while on tindamax was to stop the medication for two days to see if he feels better. Then you know it's a herx. (granted we were 18 months into treatment, not two weeks) It was a herx for my son and I can tell you Tindamax really causes some huge die offs and bad symptoms. My son felt like he was dying after the 2 nd day of tindamax. I believe the Tindamax helped him get rid of Lyme though. I remember how hard it was to get my son to eat and take his pills before running out the door for school. If you don't eat with the pills it can really bother your gut although azithromycin is not hard on the gut like doxy. He often didn't want to take it and I would find pills under the couch, on the floor, etc. I had to watch it go in his mouth to know he had taken it.we tried bribes, threats (if u dont take your meds u cant go here or there...)you name it. Is he taking enough probiotics? Our other llmd (not dr j) had us all take 4 probiotics pearls a day w antibiotics and this helped a lot. The pearls are slow release and do not get killed by the drugs. Also are u using anything to detox gut like bentonite? We did that too per a nutritionist that sfmom and elizabeth use. I think it was helpful. When my son got Lyme at ten years old we had no computer games but we ended up getting some to give him something to do while he had his Picc line. U can't swim and play sports w a Picc. We got wii and rock band and this entertained and bribed him when he was sick. He did not get addicted to the games either and once he was well he never touched them again. I guess he associated them w being sick. That is fine w me because he does more creative stuff with his free time now. Hang in there!

[JGsmom]

could all of the stomach pains be anxiety? i don't know a lot about herx symptoms, but that would bother me to give something that seems to make things worse. so sorry your son is going through all of this and also sorry for the stress of not knowing what causes what....hope it's getting better today.

 

 

Thanks, mich--anxiety does make it worse for him and he does have some Xanax for those times, but I do not feel the stomach aches are from anxiety in general.

[JGsmom]

I can't relate but I did want to tell you that while nausea isn't a common herx symtpom, it is listed on Dr. J's site as a herx symptom and it is one symptom that I have following Flagyl. It is getting less and less of a problem each week, so if he can stick to the regiment, as much as possible, it should ease with time, if it is a herx.

 

Nausea is a tough symptom to live with. Mine is accompanied with severe fatigue, which is sort of a blessing, since I tend to sleep it off. And initially nerve pain which is almost completely gone 5 or 6 weeks later.

 

It's kind of a catch 22 position to be in, you have to feel HORRIBLE in order to get better. Tell him to hang in there.

 

 

Thanks--we understand he has to live through if it is a herx, but my concern is it may not be a herx. He is not having nausea. He has a severe stomach ache--worse at night--I guess I will call it severe heartburn, He also gets very bad gas pains and abdominal pains. Dr. J's office said the herx could last a couple of weeks and it has been that. So how long do I wait before calling and asking to be switched? he's not getting the full dose now, as it is.

 

Thanks.

 

Terry,

So sorry that you are going through this. You are in great hands w Dr J....have you told them about your son's lack of eating while taking the medicine? One thing they advised me to do during treatment when i was in a similar position worrying if my son was herxing or just getting worse while on tindamax was to stop the medication for two days to see if he feels better. Then you know it's a herx. (granted we were 18 months into treatment, not two weeks) It was a herx for my son and I can tell you Tindamax really causes some huge die offs and bad symptoms. My son felt like he was dying after the 2 nd day of tindamax. I believe the Tindamax helped him get rid of Lyme though. I remember how hard it was to get my son to eat and take his pills before running out the door for school. If you don't eat with the pills it can really bother your gut although azithromycin is not hard on the gut like doxy. He often didn't want to take it and I would find pills under the couch, on the floor, etc. I had to watch it go in his mouth to know he had taken it.we tried bribes, threats (if u dont take your meds u cant go here or there...)you name it. Is he taking enough probiotics? Our other llmd (not dr j) had us all take 4 probiotics pearls a day w antibiotics and this helped a lot. The pearls are slow release and do not get killed by the drugs. Also are u using anything to detox gut like bentonite? We did that too per a nutritionist that sfmom and elizabeth use. I think it was helpful. When my son got Lyme at ten years old we had no computer games but we ended up getting some to give him something to do while he had his Picc line. U can't swim and play sports w a Picc. We got wii and rock band and this entertained and bribed him when he was sick. He did not get addicted to the games either and once he was well he never touched them again. I guess he associated them w being sick. That is fine w me because he does more creative stuff with his free time now. Hang in there!

 

Thanks lyme mom-- he is taking probiotics separated form the abx--what are the pearls you are taking and where can I find them, please?

I let him watch his netflix favorites as he says it distracts him and I know he has an X-box at his dad's--but he does get sicker ther--poor food and anxiety as his Dad has little compassion. I love dr. J as he is treating my other son now for quite awhile. As I said--he takes the pills but refuses the food in the morning. Anything he wants to eat I will make him. He craves junk when he feels well and I have explained that we need to support his immune system with god nutrition. His attitude in general is not good.

 

Dr. J says detox is not necess for kids but i would like to do something. I don't know where to find the clay or how to dose it or arrange it with the other meds so it doesn't interfere with the absorption of his meds.

Thanks for the support.

Terry

[sf_mom]

I have had nausea, stomach issues, dizziness, severe acid reflux all associated with herx's that eventually passed over time... sometimes it took a couple of months. I managed symptoms with Tums, Zantac, Advil, Bentonite Clay, etc. I have also had stomach issues directly related to specific antibiotics like doxy and needed to switch antibiotics as a result. We did stool analysis on all our kids and myself and I have a yeast problem as well with almost no digestive enzymes. Prior to Lyme Diagnoses I could not tolerate even a multi-vitamin without having an upset stomach and reflux all day. One of the main focuses for our family is to improve gut health and for that we work with a nutritionist along side our LLMD. All three of our children have LD/co-infections/immune deficiencies/gut issues along with milk, cheese, casein, egg sensitivities. We practice an elimination diet for sensitivities, hdDetox, hdProbiotics, IgG powder, Ketotifen, minerals, b-12, enzymes specific to each child issues all to help resolve the gut issues. An obvious sign of food sensitivities or gut issues is a distended belly.

 

For some children with sensitive guts or leaky gut syndrome even the smallest amount of probiotic can cause an increase in symptoms.

 

Similarly, my friends son had medication refusal and upset stomach associated with treatment. Once he was feeling better the stomaches and refusal of medication subsided. He is/was diagnoses with Lyme, Bartonella, Babesia and Strep. Currently the bartonella and strep is resolved. Typically the medication rotations have came along with a herx of those two symptoms that typically takes any where from 4 to 8 weeks to resolve. She begs, barrows, pleads, offers weekly rewards, threatens antibiotic shots temporarily to get the medication ingested and him feeling better.

 

I know I did answer your question directly because it could easily be a herx, antibiotics, gut issues or all three. Some easy things to try and hopefully provide relief are children's chewable Pepto Bismol 'watermelon favor' up to eight when he is having trouble, Tums or daily Bentonite Clay... I don't believe he can take Zantac at his age. You could do some stool testing through MetaMetrix http://www.metametrix.com/ or similar testing labs if you haven't already to understand the extend of gut issues: yeast, potential parasites, enzymes, inflammation, good bacteria, etc. Like Lyme Mom suggested you could also temporarily suspend antibiotics to confirm herxheimer but sometimes the break isn't enough to always tell due to the fact that they are so sick and bacterial load is so high.

 

I am so sorry you are going through this and I wouldn't hesitate to call Dr. J to help you sort it all out. We too have faternal boy/girl twins both with LD. They just turned 4.

 

Good Luck, Wendy

[philamom]

My daughter had a severe onset of GERD (with some food refusal) that lasted months and a lot of other GI complaints. She has lyme & bartonella. Her lyme protocol is what finally gave her relief. She rarely has any GI complaints now. She is also on a few different probiotics (Florastor, Culturelle, Therapeutics Probiotic Pearls, and my fav - Klaire Ther-Biotic Detox Support). Even though they say it's ok to give some of these with abx, I try my best to separate. I hope your son feels better soon!

Edited July 31, 2011 by philamom

[JGsmom]

I have had nausea, stomach issues, dizziness, severe acid reflux all associated with herx's that eventually passed over time... sometimes it took a couple of months. I managed symptoms with Tums, Zantac, Advil, Bentonite Clay, etc. I have also had stomach issues directly related to specific antibiotics like doxy and needed to switch antibiotics as a result. We did stool analysis on all our kids and myself and I have a yeast problem as well with almost no digestive enzymes. Prior to Lyme Diagnoses I could not tolerate even a multi-vitamin without having an upset stomach and reflux all day. One of the main focuses for our family is to improve gut health and for that we work with a nutritionist along side our LLMD. All three of our children have LD/co-infections/immune deficiencies/gut issues along with milk, cheese, casein, egg sensitivities. We practice an elimination diet for sensitivities, hdDetox, hdProbiotics, IgG powder, Ketotifen, minerals, b-12, enzymes specific to each child issues all to help resolve the gut issues. An obvious sign of food sensitivities or gut issues is a distended belly.

 

For some children with sensitive guts or leaky gut syndrome even the smallest amount of probiotic can cause an increase in symptoms.

 

Similarly, my friends son had medication refusal and upset stomach associated with treatment. Once he was feeling better the stomaches and refusal of medication subsided. He is/was diagnoses with Lyme, Bartonella, Babesia and Strep. Currently the bartonella and strep is resolved. Typically the medication rotations have came along with a herx of those two symptoms that typically takes any where from 4 to 8 weeks to resolve. She begs, barrows, pleads, offers weekly rewards, threatens antibiotic shots temporarily to get the medication ingested and him feeling better.

 

I know I did answer your question directly because it could easily be a herx, antibiotics, gut issues or all three. Some easy things to try and hopefully provide relief are children's chewable Pepto Bismol 'watermelon favor' up to eight when he is having trouble, Tums or daily Bentonite Clay... I don't believe he can take Zantac at his age. You could do some stool testing through MetaMetrix http://www.metametrix.com/ or similar testing labs if you haven't already to understand the extend of gut issues: yeast, potential parasites, enzymes, inflammation, good bacteria, etc. Like Lyme Mom suggested you could also temporarily suspend antibiotics to confirm herxheimer but sometimes the break isn't enough to always tell due to the fact that they are so sick and bacterial load is so high.

 

I am so sorry you are going through this and I wouldn't hesitate to call Dr. J to help you sort it all out. We too have faternal boy/girl twins both with LD. They just turned 4.

 

Good Luck, Wendy

 

Hi Wendy-

 

thanks for replying.You and I had some conversations re: my other son about a year ago with PANDAS and 2 positive bands that everyone said wasn't lyme and you said go to an LLMD and we had to as after his 2nd IVIG he started with seizure looking myoclonus that indicated neurologic lyme. Anyway DS-G with GI Lyme actually is on many GERD meds, Prevacid increased to twice daily, and Zantac once to twice daily as needed. He was chugging liquid antacid as well--TUMs are no longer effective. He also takes 6 GAS-X at a time as this dose seems to help him. He has been taking some of these meds since '09 but not in these high doses. It was b/c all these meds didn't work that I suspected the GI Lyme.

 

I do agree that S. Boulardii can increase gas and stomach upset--he does seem to tolerated the Culturelle well. I was also worried about the Theralac as it does have bifidus in it that can upset the bowel. So I am only giving one S. Boulardii twice per day ( to prevent yeast) and one Theralac twice per day. I also make my own home made SCD yogurt which I may start him on and decrease some of the other probiotics.

 

How do you give the bentonite clay? And where do you find it? Old Kaopectate used to be bentonite Clay but the formulation has changed to that of Pepto-Bismol and can't find the clay.

thanks for your valued input, Wendy.

 

Terry

[JGsmom]

My daughter had a severe onset of GERD (with some food refusal) that lasted months and a lot of other GI complaints. She has lyme & bartonella. Her lyme protocol is what finally gave her relief. She rarely has any GI complaints now. She is also on a few different probiotics (Florastor, Culturelle, Therapeutics Probiotic Pearls, and my fav - Klaire Ther-Biotic Detox Support). Even though they say it's ok to give some of these with abx, I try my best to separate. I hope your son feels better soon!

 

 

Thank you, I will look into the pearls and Detox as well. I appreciate the input greatly.

 

Terry

[sf_mom]

Terry,

 

I am so glad you are getting proper help!!!!!

 

It looks like you are doing a lot for his gut but you may also still want to investigate a little further as he might be helped greatly by hd B-12, enzymes or elimination diet depending on how his gut is impacted. If its a parasite on top of everything else, the problems could improve within 48 hours with right medication. Our son had blood in his stool, he did have a parasite and he did improve within 48 hours. He did have the distended belly after a year's worth of PANDAS treatments. The stool test is about 250.00 outside of insurance. A good DAN Dr. in your area could help with further investigation our perhaps your regular pediatrician would sign off on the test kit. You would need to call Metametrix for kit. Alinia was the anti-parasitic antibiotic that helped my son tremendously at the time.

 

You can purchase bentonite clay from Iherb the cheapest http://www.iherb.com/Yerba-Prima-Great-Plains-Bentonite-Detox-16-fl-oz-473-ml/4789?at=0. Embarrassing but true, we purchase 30 bottles at time. We do very large doses of 1 cup at bedtime with older DS who is 7, two hours from last antibiotic. Again, we are working with a nutritionist that guides us with these levels. Some kids do not like the taste and will not tolerate drinking it. You can purchase pills from our nutritionist and 10 pills equals 1/2 cup of liquid bentonite. http://www.uniquehealing.com/unique-healing-store/unique-healing-body-bentonite-capsules/

 

I think I remember PMing with you... Thought you might be related to a friend of mine. Do I have that correct? Didn't realize you had twins!!!

 

-Wendy

Edited July 31, 2011 by SF Mom

[philamom]

I have had nausea, stomach issues, dizziness, severe acid reflux all associated with herx's that eventually passed over time... sometimes it took a couple of months. I managed symptoms with Tums, Zantac, Advil, Bentonite Clay, etc. I have also had stomach issues directly related to specific antibiotics like doxy and needed to switch antibiotics as a result. We did stool analysis on all our kids and myself and I have a yeast problem as well with almost no digestive enzymes. Prior to Lyme Diagnoses I could not tolerate even a multi-vitamin without having an upset stomach and reflux all day. One of the main focuses for our family is to improve gut health and for that we work with a nutritionist along side our LLMD. All three of our children have LD/co-infections/immune deficiencies/gut issues along with milk, cheese, casein, egg sensitivities. We practice an elimination diet for sensitivities, hdDetox, hdProbiotics, IgG powder, Ketotifen, minerals, b-12, enzymes specific to each child issues all to help resolve the gut issues. An obvious sign of food sensitivities or gut issues is a distended belly.

 

For some children with sensitive guts or leaky gut syndrome even the smallest amount of probiotic can cause an increase in symptoms.

 

Similarly, my friends son had medication refusal and upset stomach associated with treatment. Once he was feeling better the stomaches and refusal of medication subsided. He is/was diagnoses with Lyme, Bartonella, Babesia and Strep. Currently the bartonella and strep is resolved. Typically the medication rotations have came along with a herx of those two symptoms that typically takes any where from 4 to 8 weeks to resolve. She begs, barrows, pleads, offers weekly rewards, threatens antibiotic shots temporarily to get the medication ingested and him feeling better.

 

I know I did answer your question directly because it could easily be a herx, antibiotics, gut issues or all three. Some easy things to try and hopefully provide relief are children's chewable Pepto Bismol 'watermelon favor' up to eight when he is having trouble, Tums or daily Bentonite Clay... I don't believe he can take Zantac at his age. You could do some stool testing through MetaMetrix http://www.metametrix.com/ or similar testing labs if you haven't already to understand the extend of gut issues: yeast, potential parasites, enzymes, inflammation, good bacteria, etc. Like Lyme Mom suggested you could also temporarily suspend antibiotics to confirm herxheimer but sometimes the break isn't enough to always tell due to the fact that they are so sick and bacterial load is so high.

 

I am so sorry you are going through this and I wouldn't hesitate to call Dr. J to help you sort it all out. We too have faternal boy/girl twins both with LD. They just turned 4.

 

Good Luck, Wendy

 

Hi Wendy-

 

thanks for replying.You and I had some conversations re: my other son about a year ago with PANDAS and 2 positive bands that everyone said wasn't lyme and you said go to an LLMD and we had to as after his 2nd IVIG he started with seizure looking myoclonus that indicated neurologic lyme. Anyway DS-G with GI Lyme actually is on many GERD meds, Prevacid increased to twice daily, and Zantac once to twice daily as needed. He was chugging liquid antacid as well--TUMs are no longer effective. He also takes 6 GAS-X at a time as this dose seems to help him. He has been taking some of these meds since '09 but not in these high doses. It was b/c all these meds didn't work that I suspected the GI Lyme.

 

I do agree that S. Boulardii can increase gas and stomach upset--he does seem to tolerated the Culturelle well. I was also worried about the Theralac as it does have bifidus in it that can upset the bowel. So I am only giving one S. Boulardii twice per day ( to prevent yeast) and one Theralac twice per day. I also make my own home made SCD yogurt which I may start him on and decrease some of the other probiotics.

 

How do you give the bentonite clay? And where do you find it? Old Kaopectate used to be bentonite Clay but the formulation has changed to that of Pepto-Bismol and can't find the clay.

thanks for your valued input, Wendy.

 

Terry

Not to throw another curve ball at you, but I once had a conversation with the owner of Custom Probiotics. He told me the downside to taking daily GERD meds (prevacid,tums) is that it lowers the stomach acid allowing the possibility of other bacteria to take it's place, like c-diff, exc. I asked about c-diff because my daughter had past occurences of it. So, I went back and asked her doctors about it and they said it usually wasn't the case. Well, after 3 months of Prevacid my daughter got c-diff again. That's why probiotics, in my opinion, are so very important. Just our experience.

Edited July 31, 2011 by philamom

[JGsmom]

Terry,

 

I am so glad you are getting proper help!!!!!

 

It looks like you are doing a lot for his gut but you may also still want to investigate a little further as he might be helped greatly by hd B-12, enzymes or elimination diet depending on how his gut is impacted. If its a parasite on top of everything else, the problems could improve within 48 hours with right medication. Our son had blood in his stool, he did have a parasite and he did improve within 48 hours. He did have the distended belly after a year's worth of PANDAS treatments. The stool test is about 250.00 outside of insurance. A good DAN Dr. in your area could help with further investigation our perhaps your regular pediatrician would sign off on the test kit. You would need to call Metametrix for kit. Alinia was the anti-parasitic antibiotic that helped my son tremendously at the time.

 

You can purchase bentonite clay from Iherb the cheapest http://www.iherb.com/Yerba-Prima-Great-Plains-Bentonite-Detox-16-fl-oz-473-ml/4789?at=0. Embarrassing but true, we purchase 30 bottles at time. We do very large doses of 1 cup at bedtime with older DS who is 7, two hours from last antibiotic. Again, we are working with a nutritionist that guides us with these levels. Some kids do not like the taste and will not tolerate drinking it. You can purchase pills from our nutritionist and 10 pills equals 1/2 cup of liquid bentonite. http://www.uniquehealing.com/unique-healing-store/unique-healing-body-bentonite-capsules/

 

I think I remember PMing with you... Thought you might be related to a friend of mine. Do I have that correct? Didn't realize you had twins!!!

 

-Wendy

 

 

Hi Wendy--

 

Thanks for the info--yes, we did PM and you thought I was related to somebody b/c I'm in RI. You have a good memory! I do have 12.5 yr old twin boys, fraternal. They are keeping me hopping! I did not realize you have twins as well.

I know if it tastes icky, he won't take it--capsules may be better. He has no other bowel issues, no blood, no distention, no diarrhea or constipation, just the unrelenting GERD. So, we will take it one step at a time.

I'm happy to reconnect with you--I always wanted to let you know that you were right and we needed to be in Lyme tx. That son w/ PANDAS and Lyme also has Bartonella--I found the rash which my ped-doc said was stretch marks and Dr. J confirmed bartonella. No blood confirmation of bartonella until the 3rd blood test finally with Specialty labs.

 

This son with the GI Lyme tests neg. for Bartonella but Dr. J suspects he does have it and will re-test again. The so w/ GI Lyme is not a PANDAS kid, thank goodness.

Thanks again,

Terry

[sf_mom]

Its funny.... I always remember the twin mom's posting to the forum because of its unique experience. I am so relived you are back, getting proper help and we are reconnecting.

 

I still think because of the acid reflux and all your attempts to manage the problem unsuccessfully there might be 'something' else. When doing a stool samples they will check for H. Pylori, Giardia, C-Diff and Unknown parasites, etc. Safer to rule out as it could be a simple fix and another 'infection/issue' his body can not resolve on its own due to underlying Lyme.

 

All my children present differently:

 

DS1: Predominately TICS with sudden on-set after strep related illnesses (all other PANDAS symptoms). OCD resolved over 18 months ago. Originally PANDAS diagnoses.

 

DS2 (Twin): Predominately OCD/Rages and no sudden on-set, Autism traits, full body rashes. He has developed minor shoulder shrug as a result of treatment that has since resolved.

 

DD (Twin): Autism traits, low body weight, full body rashes, anxiety 'at times' and no sudden on-set. Did notice eye blinking on two occasions after fever.

 

We have positive results for Babesia, Bartonella, Lyme, XMRV, HHV6, Coxsackies, Parasite 'resolved', Strep 'resolved'.... in our family.

 

I have spoken to many that get converted test results after treating for some time. I am so happy you found the bartonella in the one son. Again, it is an 'indication' the other son has it was well. I am convinced you'll figure this out for both of them.

 

-Wendy