Strep AGAIN! Worries about Lyme in all

[matis_mom]

I'll recap because I've been posting here and there. DS is doing pretty well, but since we know he still relapses, we got plasmapheresis scheduled for 9/27 (if the insurance doesn't mess it up, now they approved it as in-patient, but only for 1 day!).

 

Meanwhile I've been going to the doctor to figure out my strep situation. First time with this doc (brought bloodwork from other doc showing elevated ASO) she agrees readily to treat, does a rapid just in case, it's positive (no symptoms). She gives me Augmentin, so I think, great, that should work. A few days into it I have full blown strep, patch on tonsil, pain, etc. Go back, rapid positive again after 6 days on Augmentin. Changed to Biaxin, 10 days plus a refill. After both courses, I go back, rapid negative but throat still looks red and I have a swollen tonsil. She thinks it may be viral. So after I week I go back, throat looks the same, but she agrees if it were viral it would have passed by now, so she gives me Biaxin again and takes culture and runs Lyme test (I had a horrible pain in my shoulder). They called Tuesday to say both Lyme and culture are negative, but to come back if I don't see improvement. Well it's Thursday and my throat looks worse, it seems I'm getting a patch on one tonsil, ds's knee is hurting and now in the evening he seems a bit more anxious. My doc is booked tomorrow but I'll call in the am to see if they have any cancellations or if I can see someone else. Otherwise I'd have to wait til Tuesday!

 

On top of that, dd10 is showing great anxiety, her throat looks red and swollen tonsils. DD8 has a bit of a rash that looks like it may be impetigo. DD6 had a bit of a pink eye the other day and his throat doesn't look too good. So I took those three in first thing in the am. Doctor agrees they look red and swollen but rapid is negative. She thinks it may be viral. At that point I was relieved so I didn't push it. They always do a culture so we'll wait for that. She knows about Mati's plasmapheresis, and is agreeable to prescribing for everyone.

 

So I ordered the Cunningham test for dd10, as she clearly is showing an increase in worries, fears, and even telling me she has this little ritual she does with her bunny that has to be just so. It's almost as if she had read the book on PANDAS and was trying to purposely bring up certain symptoms. I also made an appointment for her with Dr. Latimer, but that won't happen until November. Plus an appointment with a pediatric infectious disease doctor who treats Lyme (I don't know how knowledgeable he is but he is in-network and can see her next Thursday). She does have a history of tick bites (one three years ago, tested negative, not treated. One in April, tested negative, not treated.

 

I also wanted to do the Igenex on DS before plasmapheresis, as I'm afraid afterwards it would be harder to get a positive (does that make sense?)

 

I am concerned about Lyme for myself, since I've had many of the symptoms in the last two years (since we moved to the country!) My husband had Lyme summer 08, in the fall I felt like I had been run over by a train, very tired, could not function, had depression. Got tested for Lyme (negative) and put on Celexa, which worked great. But then off and on I've had bouts of depression, or mood swings. I am overall tired (but who wouldn't with 8 kids!) I also clearly remember having tingling in the left side of my body while pregnant, but I just thought it was a pinched nerve. Back in the fall of 08 they also found a goiter in my thyroid, which was small so there wasn't much concern. Fast forward a year and a half, the thing looks bigger, got ultrasound and it did grow, did a fine needle aspiration, all clear. These last few months I've been tired, still dealing with mood swings/depression, and overall stressed out about our whole health situation. Another cause of concern is that Augmentin did not work, then Biaxin did, but now Biaxin does not seem to be working on round 2. I read somewhere that is one of the symptoms of Lyme, that whatever antibiotic works now, will not work next time.

 

We are driving to CT next Wednesday to see Dr. B. Infectious disease appointment is Thursday. Plasmapheresis is supposed to be the following week (9/27) and dh will be going to the hospital with ds. On 9/28, I had made an appointment a while back with an llmd (Dr. Beals) for ds, but now I'm thinking I'll ask them to see dd instead. And somewhere in there I need to get myself checked for Lyme, and check all the kids again.

 

As you can see my mind is racing 100 mi/hr. DH thinks we need to slow down, he feels we are turning into a family of hypocondriacs and making things worse by panicking too much. I don't blame him. It does feel like one day to the next we are all sick and our life is upside down. I understand he is trying to keep some sense of normalcy. I am in "I'm going to beat this thing" mode, making appointments left and right, calling here and there and everywhere to try to find in-network docs, since it seems we are in this for the long haul.

 

I wasn't too bad when we thought it was just DS, but now it seems the problem is much bigger. I don't have a clue what I'm doing, I just need to do something! It seems crazy but yet again, I feel confident things will work out.

 

I will get the kids tested again, since I'm pretty positive dd has strep, and I'll check the others, dh and myself. And if we still have strep I guess we'll have to cancel pheresis again, or have dh take leave and stay somewhere away from home for a few weeks, but with all the medical expenses, we cannot jeopardize his job either.

 

Thanks for bearing with me!

 

Isabel

Edited September 17, 2010 by mati's mom

[Fixit]

I'll recap because I've been posting here and there. DS is doing pretty well, but since we know he still relapses, we got plasmapheresis scheduled for 9/27 (if the insurance doesn't mess it up, now they approved it as in-patient, but only for 1 day!).

 

Meanwhile I've been going to do doctor to figure out my strep situation. First time with this doc (brought bloodwork from other doc showing elevated ASO) she agrees readily to treat, does a rapid just in case, it's positive (no symptoms). She gives me Augmentin, so I think, great, that should work. A few days into it I have full blown strep, patch on tonsil, pain, etc. Go back, rapid positive again after 6 days on Augmentin. Changed to Biaxin, 10 days plus a refill. After both courses, I go back, rapid negative but throat still looks red and I have a swollen tonsil. She thinks it may be viral. So after I week I go back, throat looks the same, but she agrees if it were viral it would have passed by now, so she gives me Biaxin again and takes culture and runs Lyme test (I had a horrible pain in my shoulder). They called Tuesday to say both Lyme and culture are negative, but to come back if I don't see improvement. Well it's Thursday and my throat looks worse, it seems I'm getting a patch on one tonsil, ds's knee is hurting and now in the evening he seems a bit more anxious. My doc is booked tomorrow but I'll call in the am to see if they have any cancellations or if I can see someone else. Otherwise I'd have to wait til Tuesday!

 

On top of that, dd10 is showing great anxiety, her throat looks red and swollen tonsils. DD8 has a bit of a rash that looks like it may be impetigo. DD6 had a bit of a pink eye the other day and his throat doesn't look too good. So I took those three in first thing in the am. Doctor agrees they look red and swollen but rapid is negative. She thinks it may be viral. At that point I was relieved so I didn't push it. They always do a culture so we'll wait for that. She knows about Mati's plasmapheresis, and is agreeable to prescribing for everyone.

 

So I ordered the Cunningham test for dd10, as she clearly is showing an increase in worries, fears, and even telling me she has this little ritual she does with her bunny that has to be just so. It's almost as if she had read the book on PANDAS and was trying to purposely bring up certain symptoms. I also made an appointment for her with Dr. Latimer, but that won't happen until November. I also made an appointment with a pediatric infectious disease doctor who treats Lyme (I don't know how knowledgeable he is but he is in-network and can see her next Thursday). She does have a history of tick bites (one three years ago, tested negative, not treated. One in April, tested negative, not treated.

 

I also wanted to do the Igenex on DS before plasmapheresis, as I'm afraid afterwards it would be harder to get a positive (does that make sense?)

 

I am concerned about Lyme for myself, since I've had many of the symptoms in the last two years (since we moved to the country!) My husband had Lyme summer 08, in the fall I felt like I had been run over by a train, very tired, could not function, had depression. Got tested for Lyme (negative) and put on Celexa, which worked great. But then off and on I've had bouts of depression, or mood swings. I am overall tired (but who wouldn't with 8 kids!) I also clearly remember having tingling in the left side of my body while pregnant, but I just thought it was a pinched nerve. Back in the fall of 08 they also found a goiter in my thyroid, which was small so there wasn't much concern. Fast forward a year and a half, the thing looks bigger, got ultrasound and it did grow, did a fine needle aspiration, all clear. These last few months I've been tired, still dealing with mood swings/depression, and overall stressed out about our whole health situation. Another cause of concern is that Augmentin did not work, then Biaxin did, but now Biaxin does not seem to be working on round 2. I read somewhere that is one of the symptoms of Lyme, that whatever antibiotic works now, will not work next time.

 

We are driving to CT next Wednesday to see Dr. B. Infectious disease appointment is Thursday. Plasmapheresis is supposed to be the following week (9/27) and dh will be going to the hospital with ds. On 9/28, I had made an appointment with an llmd (Dr. Beals) for ds, but now I'm thinking I'll ask them to see dd instead. And somewhere in there I need to get myself checked for Lyme, and check all the kids again.

 

As you can see my mind is racing 100 mi/hr. DH thinks we need to slow down, he feels we are turning into a family of hypocondriacs and making things worse by panicking too much. I don't blame him. It does feel like one day to the next we are all sick and our life is upside down. I understand he is trying to keep some sense of normalcy. I am in "I'm going to beat this thing" mode, making appointments left and right, calling here and there and everywhere to try to find in-network docs, since it seems we are in this for the long haul.

 

I wasn't too bad when we thought it was just DS, but now it seems the problem is much bigger. I don't have a clue what I'm doing, I just need to do something! And yet again, I feel confident things will work out.

 

I will get the kids tested again, since I'm pretty positive dd has strep, and I'll check the others, dh and myself. And if we still have strep I guess we'll have to cancel pheresis again, or have dh take leave and stay somewhere away from home for a few weeks, but with all the medical expenses, we cannot jeopardize his job either.

 

Thanks for bearing with me!

 

Isabel

 

All i can say is..i understand...

and you do have to line things up continually ..some are months out...some get squeezed in...then the child gets better/worse/reexposed/in house exposure.

 

if you treat step now..i would hope a majority of it would by gone by pex date....

 

i don't know this part...doc l doesn't recommend pex if kid is sick....i thought some go in for emergency pex and they would be very ill??

[matis_mom]

All i can say is..i understand...

and you do have to line things up continually ..some are months out...some get squeezed in...then the child gets better/worse/reexposed/in house exposure.

 

if you treat step now..i would hope a majority of it would by gone by pex date....

 

i don't know this part...doc l doesn't recommend pex if kid is sick....i thought some go in for emergency pex and they would be very ill??

My problem is now I cannot be sure I'm clear even while on antibiotics!

[sf_mom]

Dr. B will order Igenex testing for you. If you are positive, bring your daughter to Dr. Beals with your results for further testing.

[lyme_mom]

You should get the lab orp cd57 test which is a good screen for Lyme. I'd be very Leery of an infectious disease doctor who "treats Lyme" unless they are a member I'd ilads. ID doctors in general do not believe in chronic Lyme nor do they believe intreating lyme more than 4 to 6 weeks. See state of Connecticut vs IDSA for the whole story. Dr b in md is excellent though! If your cd57 is under 100 it means u likely have an active Lyme infection. Insurance covers test and it only works on adults. It comes back fast-in two days.

[matis_mom]

You should get the lab orp cd57 test which is a good screen for Lyme. I'd be very Leery of an infectious disease doctor who "treats Lyme" unless they are a member I'd ilads. ID doctors in general do not believe in chronic Lyme nor do they believe intreating lyme more than 4 to 6 weeks. See state of Connecticut vs IDSA for the whole story. Dr b in md is excellent though! If your cd57 is under 100 it means u likely have an active Lyme infection. Insurance covers test and it only works on adults. It comes back fast-in two days.

Thanks Lyme Mom and SF Mom! I'll see if my local doc will order the CD57 for me. I'll convince my husband to get tested too.

I don't mind doing the Igenex for me but I'm wondering how acurate it would be since I have been on antibiotics (but not Lyme specific), and/or may need a cyst buster to get a positive.

This is a big chinese puzzle for our family and it seems someone kicked the board and we are slowly gathering the pieces!

Edited September 17, 2010 by mati's mom

[matis_mom]

You should get the lab orp cd57 test which is a good screen for Lyme. I'd be very Leery of an infectious disease doctor who "treats Lyme" unless they are a member I'd ilads. ID doctors in general do not believe in chronic Lyme nor do they believe intreating lyme more than 4 to 6 weeks. See state of Connecticut vs IDSA for the whole story. Dr b in md is excellent though! If your cd57 is under 100 it means u likely have an active Lyme infection. Insurance covers test and it only works on adults. It comes back fast-in two days.

Thanks Lyme Mom and SF Mom! I'll see if my local doc will order the CD57 for me. I'll convince my husband to get tested too.

I don't mind doing the Igenex for me but I'm wondering how acurate it would be since I have been on antibiotics (but not Lyme specific), and/or may need a cyst buster to get a positive.

This is a big chinese puzzle for our family and it seems someone kicked the board and we are slowly gathering the pieces!

Well, doctor said yes the throat still looks like strep, and judging by the timeline of symptoms most likely I do have Lyme and she understands a negative test does not mean you don't have it. So she put me on Ceftin for 30 days. I will probably have to seek an LLMD for myself, but it's a start. At least she mentioned some people require repeated antibiotics and if that doesn't work she has fought insurance companies to get IV abxs approved for her patients.

I e-mail Dr. Latimer about the whole strep situation and will be taking the rest of the kids in to check for strep.

[thereishope]

Geesh! I hope you get this all sorted out. Did the doc once put all your kids on antibiotics w/o testing just to make it easier? Would they do that again?

 

Also, are you still nursing? I remember someone (either Pacific Mama or Lyme Mom) saying Lyme can be passed through breastmilk. You may want to research that more.

 

As for you negative strep test, you were probably just tested too soon after finishing antibiotics.

 

Please keep us updated!

Edited September 17, 2010 by Vickie

[matis_mom]

Geesh! I hope you get this all sorted out. Did the doc once put all your kids on antibiotics w/o testing just to make it easier? Would they do that again?

 

Also, are you still nursing? I remember someone (either Pacific Mama or Lyme Mom) saying Lyme can be passed through breastmilk. You may want to research that more.

 

As for you negative strep test, you were probably just tested too soon after finishing antibiotics.

 

Please keep us updated!

Thanks Vickie. The doc will put everyone on abxs when Matias goes for pheresis (if not, I have enough family members willing to prescribe!).

As for baby, if I do have it, it's been two years so she was exposed in utero, and nursing for now 8 months, so it'd be like closing the gate after the horse escaped. I'm thinking at least she might be getting some of my abxs through the milk? If I get a positive test (which I hope I do), I will look at her more closely, but so far she seems healthy except for that ER incident.

As far as the strep test, I never did stop antibiotics, I just went in because they don't seem to be working. The doctor literaly said, "I'll put you on Ceftin and if that doesn't work, you're screwed!" Not very encouraging! I know we will get this sorted out, but it will take some time.

[thereishope]

Nice response from the doctor! You may be right about some antibiotics going through breastmilk. I wish I could make it all better for you!

 

The doctor literaly said, "I'll put you on Ceftin and if that doesn't work, you're screwed!" Not very encouraging! I know we will get this sorted out, but it will take some time.

[matis_mom]

Went to the pediatrician today to check out ds14, and bring back ds6 who threw up this am. She was saying oh maybe it's just a bug and we are still waiting on the cultures (rapids were negative). So I told her about my situation (I actually had her look in my throat on Thursday), and that Dr. L. wants us to jump on this, and how I'm worried about dd10, etc. She agreed that it could be Lyme behind all this (all my kids have had ticks on them at different times), and at this point we should *think* about putting everyone on antibiotics and treating for Lyme/Strep. I told her we've been through enough of this, I don't need to *think* about it. So she gave us scripts for everyone for 30 days. I sure hope this works, or at least buys us some time. I guess that's the advantage of living in a town where Lyme is endemic, both docs were willing to treat without a positive test.

[matis_mom]

Went to the pediatrician today to check out ds14, and bring back ds6 who threw up this am. She was saying oh maybe it's just a bug and we are still waiting on the cultures (rapids were negative). So I told her about my situation (I actually had her look in my throat on Thursday), and that Dr. L. wants us to jump on this, and how I'm worried about dd10, etc. She agreed that it could be Lyme behind all this (all my kids have had ticks on them at different times), and at this point we should *think* about putting everyone on antibiotics and treating for Lyme/Strep. I told her we've been through enough of this, I don't need to *think* about it. So she gave us scripts for everyone for 30 days. I sure hope this works, or at least buys us some time. I guess that's the advantage of living in a town where Lyme is endemic, both docs were willing to treat without a positive test.

I got some validation today when the pediatrician called with PANDAS ds's results... not a positive by CDC criteria, but 4 bands present.

ASO, Anti-DNASE B, and Mycoplasma IgG also high.

 

I am hoping now she will run a WB on all the kids and see what we get.

[lyme_mom]

I'll recap because I've been posting here and there. DS is doing pretty well, but since we know he still relapses, we got plasmapheresis scheduled for 9/27 (if the insurance doesn't mess it up, now they approved it as in-patient, but only for 1 day!).

 

Meanwhile I've been going to the doctor to figure out my strep situation. First time with this doc (brought bloodwork from other doc showing elevated ASO) she agrees readily to treat, does a rapid just in case, it's positive (no symptoms). She gives me Augmentin, so I think, great, that should work. A few days into it I have full blown strep, patch on tonsil, pain, etc. Go back, rapid positive again after 6 days on Augmentin. Changed to Biaxin, 10 days plus a refill. After both courses, I go back, rapid negative but throat still looks red and I have a swollen tonsil. She thinks it may be viral. So after I week I go back, throat looks the same, but she agrees if it were viral it would have passed by now, so she gives me Biaxin again and takes culture and runs Lyme test (I had a horrible pain in my shoulder). They called Tuesday to say both Lyme and culture are negative, but to come back if I don't see improvement. Well it's Thursday and my throat looks worse, it seems I'm getting a patch on one tonsil, ds's knee is hurting and now in the evening he seems a bit more anxious. My doc is booked tomorrow but I'll call in the am to see if they have any cancellations or if I can see someone else. Otherwise I'd have to wait til Tuesday!

 

On top of that, dd10 is showing great anxiety, her throat looks red and swollen tonsils. DD8 has a bit of a rash that looks like it may be impetigo. DD6 had a bit of a pink eye the other day and his throat doesn't look too good. So I took those three in first thing in the am. Doctor agrees they look red and swollen but rapid is negative. She thinks it may be viral. At that point I was relieved so I didn't push it. They always do a culture so we'll wait for that. She knows about Mati's plasmapheresis, and is agreeable to prescribing for everyone.

 

So I ordered the Cunningham test for dd10, as she clearly is showing an increase in worries, fears, and even telling me she has this little ritual she does with her bunny that has to be just so. It's almost as if she had read the book on PANDAS and was trying to purposely bring up certain symptoms. I also made an appointment for her with Dr. Latimer, but that won't happen until November. Plus an appointment with a pediatric infectious disease doctor who treats Lyme (I don't know how knowledgeable he is but he is in-network and can see her next Thursday). She does have a history of tick bites (one three years ago, tested negative, not treated. One in April, tested negative, not treated.

 

I also wanted to do the Igenex on DS before plasmapheresis, as I'm afraid afterwards it would be harder to get a positive (does that make sense?)

 

I am concerned about Lyme for myself, since I've had many of the symptoms in the last two years (since we moved to the country!) My husband had Lyme summer 08, in the fall I felt like I had been run over by a train, very tired, could not function, had depression. Got tested for Lyme (negative) and put on Celexa, which worked great. But then off and on I've had bouts of depression, or mood swings. I am overall tired (but who wouldn't with 8 kids!) I also clearly remember having tingling in the left side of my body while pregnant, but I just thought it was a pinched nerve. Back in the fall of 08 they also found a goiter in my thyroid, which was small so there wasn't much concern. Fast forward a year and a half, the thing looks bigger, got ultrasound and it did grow, did a fine needle aspiration, all clear. These last few months I've been tired, still dealing with mood swings/depression, and overall stressed out about our whole health situation. Another cause of concern is that Augmentin did not work, then Biaxin did, but now Biaxin does not seem to be working on round 2. I read somewhere that is one of the symptoms of Lyme, that whatever antibiotic works now, will not work next time.

 

We are driving to CT next Wednesday to see Dr. B. Infectious disease appointment is Thursday. Plasmapheresis is supposed to be the following week (9/27) and dh will be going to the hospital with ds. On 9/28, I had made an appointment a while back with an llmd (Dr. Beals) for ds, but now I'm thinking I'll ask them to see dd instead. And somewhere in there I need to get myself checked for Lyme, and check all the kids again.

 

As you can see my mind is racing 100 mi/hr. DH thinks we need to slow down, he feels we are turning into a family of hypocondriacs and making things worse by panicking too much. I don't blame him. It does feel like one day to the next we are all sick and our life is upside down. I understand he is trying to keep some sense of normalcy. I am in "I'm going to beat this thing" mode, making appointments left and right, calling here and there and everywhere to try to find in-network docs, since it seems we are in this for the long haul.

 

I wasn't too bad when we thought it was just DS, but now it seems the problem is much bigger. I don't have a clue what I'm doing, I just need to do something! It seems crazy but yet again, I feel confident things will work out.

 

I will get the kids tested again, since I'm pretty positive dd has strep, and I'll check the others, dh and myself. And if we still have strep I guess we'll have to cancel pheresis again, or have dh take leave and stay somewhere away from home for a few weeks, but with all the medical expenses, we cannot jeopardize his job either.

 

Thanks for bearing with me!

 

Isabel

Isabel,

 

You sure have your hands full. So sorry to hear you have lyme but it is treatable and Dr. Beals is excellent. Good news is that you don't need to spend money on Igenex testing b/c you already have a positive result. Dr. Beals will want to know your cd57 score too but that test is covered by insurance.

I would bring everybody who has lyme to see him. I would call them and see if he can squeeze you in possibly b/c you just got a positive lyme test. He can sometimes do that but you need to let them know that you would like to this, especially if you are driving a long way. It is common for multiple members of a family to have lyme. It is treatable as long as you see an ilads doctor who knows how to get rid of it like Dr. Beals. Hang in there!