Lyme, strep, or both?

[laure]

Laure- could you do a combination of my and SF mom's suggestions.

 

Drop everything- do 14 days of clindamycin (with lots of probiotics) to erradicate strep, if any.

THEN, if she is not better, drop all meds (except probiotics). If it IS a herx, how long until you see improvement? A few days?

If no improvement, so you feel it is not a herx, consider IVIG, steroids (possibly IV) or pex.

 

It is still hard to have absolute proof, because with pandas, things can take a few days to react, which may muddy the waters. But maybe this process would give you some clues.

 

 

Interesting idea, thanks for that...but in my medicine cabinet - quite large I must say - I only have augmentin, keflex, vancomycin, zithromax, bactrim, and tindamax. think one of those are strong on strep?

Edited May 16, 2011 by laure

[laure]

Want to see ART doc, but will any of these docs listen to that diagnosis?

 

what do you mean -- dr b and/or dr j listen to the ART diagnosis? i think you have to understand that they are different ways of approaching medicine -- so you're asking dr's who have worked in one mind set to accept another. i think the most to hope for is that they are open to investigating what you may say you have found through ART. i don't know that they would or even that i feel i would expect them to treat in their manners what you say was discovered in an ART diagnosis, unless they then find evidence of it in their terms.

 

it's difficult to try to walk the line between traditional and alternative/complementary medicine -- i've been trying for 2.5 years since pandas diagnosis. i do feel fortunate currently that i think we have found some open-minded helpful people that work in line with their beliefs and experience AND are open to what i have to say about my experience/research AND to entertain ideas other than their own experience. however, they will not treat based on something other than their philosophies. that's where it comes in that i have to make the decisions about what path to follow. but, i don't know that it's really that different than any one else on this board navigating these unknown waters.

 

our experience -- when ds6 was first diagnosed through ART, i called ped office asking for consult -- asst told me procedure of dr's notes, etc, etc, etc. i decided it wasn't worth the hassle, time, money b/c i was going to follow ART based treatment anyway. at ped appt. a few months later (consult for extreme ocd non eating that i believe was herx but needed ped in case ds ended up in hospital for IV hydration) -- ped told me that wasn't really all necessary and he would have had me come in for office visit and discussed it all. even before that, we have discussed that we are using homeopathy (ped is from india, homeopathy is part of medical training - for familiarity, not so much training in it -, his mother had been into homeopathy, his treatment path has gotten much more traditional than when he began medicine ). he is clear that he is open-minded about my choices but will give me opinions/treatments based on his expertise due to his experience.

 

ds9 -- diagnosed first by ART for all TBI, strep. was having physical symptoms, most serious of shortness of breath and poor endurance. i did consult with ped even though was planning on following ART treatment plan but wanted to be sure about other possible causes. did blood work, EKG, chest x-ray, expensive echocardiogram. all neg. basically, shoulder shrug from traditional medicine (i don't have blame, think is what most would find). about 5 mths into treatment, most of ds's issues have resolved.

 

i don't have experience with dr j or dr b, but think they would have to do their own tests to then treat. but if you asked for investigation of something, say CMV or HHV, it seems they should do it.

 

other note -- someone asked you about bentonite -- i was on treatment for bartonella for 4 mths. i added small amt of bentonite and shortly after got small bartonella rash that lasted a few days. at same time, migraine (that i have history of) were frequent and intense. this lasted for a few months. related? possibly.

 

good luck!

 

I see your point, I'm sure you are right. We just need to believe in a path...and right now that is difficult. Tried to move up our ART appt, from June, but no openings, unfortunately. I am back to calling Dr. J's office to beg for options, perhaps a follow-up SOON.

[sf_mom]

OK here is what we are doing to figure out my DH's ongoing 'climbing' strep titers. We did have my husband checked for LD. He is showing IgG response 'exposure' and no IgM response, not even band 41.... so essentially negative or past infection. We also did provoke for Lyme and loaded him up with antibiotics and checked for DNA in his urine and he was negative. We keep investigating because I am not able to handle Lyme and we don't want him continually giving it back to me. 'If' he has Lyme.... he handles it perfectly fine with low level symptoms of 'acid reflux, frequent stiff necks/neck pain, prostrate pains, etc' and all these symptoms resolved with antibiotic treatment last year. He is healthy, healthy and is easily able to run 7 miles several times a week..... no neuropsych symptoms either.

 

They said it could be very possible he is unable to resolve the strep due to 'other' issues and could be as simple as his ability to detox properly. We are running the following tests to ensure there are no other issues/infections involved.

 

- Bartonella FISH - Igenex

- Bartonella AB - Igenex

- Bartonella - Fry Smear

- HLA Typing - Genetic testing 'my understanding' is ones ability to detox properly

- Mycoplasma pneumoniae - Lab Corp

- Chlamydia pneumoniae - Lab Corp

- Shoemaker Panel - Mold

 

We have also been recommended to pursue ART testing locally if he essentially comes out negative for everything listed above. At that point, we'll feel we've pursued every avenue to understand the raised strep titers and it could just be his 'norm'.

 

I hope that helps to give you a little perspective based on what we are doing to understand how strep titers are impacting our family. Sorry, I know this doesn't help immediately for DD..... I just happen to believe now there is such a broader picture involved and the strep titers are an obvious indication and correlation with her OCD symptoms BUT probably not separate stand alone issue.

 

Again, I think taking an antibiotic break is the way to go... temporarily.

 

-Wendy

Edited May 16, 2011 by SF Mom

[chodnett]

We have had tonsils and adnoids removed as of Jan2011 one daughters ASO and Dnase went up over 250 points higher. DO you have to wait to see results because I have seen nothing different yet.

[laure]

OK here is what we are doing to figure out my DH's ongoing 'climbing' strep titers. We did have my husband checked for LD. He is showing IgG response 'exposure' and no IgM response, not even band 41.... so essentially negative or past infection. We also did provoke for Lyme and loaded him up with antibiotics and checked for DNA in his urine and he was negative. We keep investigating because I am not able to handle Lyme and we don't want him continually giving it back to me. 'If' he has Lyme.... he handles it perfectly fine with low level symptoms of 'acid reflux, frequent stiff necks/neck pain, prostrate pains, etc' and all these symptoms resolved with antibiotic treatment last year. He is healthy, healthy and is easily able to run 7 miles several times a week..... no neuropsych symptoms either.

 

They said it could be very possible he is unable to resolve the strep due to 'other' issues and could be as simple as his ability to detox properly. We are running the following tests to ensure there are no other issues/infections involved.

 

- Bartonella FISH - Igenex

- Bartonella AB - Igenex

- Bartonella - Fry Smear

- HLA Typing - Genetic testing 'my understanding' is ones ability to detox properly

- Mycoplasma pneumoniae - Lab Corp

- Chlamydia pneumoniae - Lab Corp

- Shoemaker Panel - Mold

 

We have also been recommended to pursue ART testing locally if he essentially comes out negative for everything listed above. At that point, we'll feel we've pursued every avenue to understand the raised strep titers and it could just be his 'norm'.

 

I hope that helps to give you a little perspective based on what we are doing to understand how strep titers are impacting our family. Sorry, I know this doesn't help immediately for DD..... I just happen to believe now there is such a broader picture involved and the strep titers are an obvious indication and correlation with her OCD symptoms BUT probably not separate stand alone issue.

 

Again, I think taking an antibiotic break is the way to go... temporarily.

 

-Wendy

 

Would you break from probiotics, herbal stuff, clay too?

[philamom]

SF Mom- I would like to run the Shoemaker panel. Is it a bunch of different tests from different labs? I need to bring the information to our DAN doctor, but wondering if I will need to bring my daughter to different labs? thx

[KaraM]

Really, really struggling here...dd10 in tears several times a day now because she realizes she can't do all the things her friends can do. Her OCD getting worse by the day, and last night we "treated" the family to dinner at a Japanese Steak House, only to have her dissolve in tears as multiple people touched our plates and we all continued to eat off them. She was so humiliated by her tears and crazed by contamination all at the same time.

I am at a total loss, as are our doctors, as to why her ASO is over 250 and antiDNase B titers at 978 while on 4 abx. Dr. B. switched her to Vancomycin 2 weeks ago from Augmentin, to no avail. Still on Zith and Bactrim per Dr. J. I discontinued the Tindamax this weekend - no change. Doing 400 billion probiotics a day and 20 bentonite clay pills a day. She is a trooper about taking pills. Last night she talked about wanting to die, it was heart breaking. Hasn't been this way since November. In a way two doctors makes it more confusing because Dr. J treating for lyme and Dr. B. treating for strep. All the while she has no outward strep symptoms, and no one sick in the family.

She cannot hold anything in her hands, bring anything home from school, touch any handles, remotes, computer keys, books, papers, toys, her bike, and even get in the pool at the hotel we stayed at. All she can do is shower many times a day (average 6-8).

What would you do?

 

I feel so much for you. We've had very similar experiences with contamination as well as the talks of dying, wishing she weren't alive. She even asked my dh to kill her. I'm so sorry for what you are going through.

 

I'm wondering about the betonite clay and when you are giving it to her relative to the abx. I've never used the betonite clay. It's supposed to help with detox, right? Is it a binding agent, like charcoal? If it is, then I believe it should not be given close in time to the abx. Our LLMD said not to give the charcoal close in time to the abx or it would just negate the effects of the abx, by binding to them and eliminating the abx from the body. Maybe this is a question to ask your do (or maybe others here can chime in.)

 

Kara

[laure]

Really, really struggling here...dd10 in tears several times a day now because she realizes she can't do all the things her friends can do. Her OCD getting worse by the day, and last night we "treated" the family to dinner at a Japanese Steak House, only to have her dissolve in tears as multiple people touched our plates and we all continued to eat off them. She was so humiliated by her tears and crazed by contamination all at the same time.

I am at a total loss, as are our doctors, as to why her ASO is over 250 and antiDNase B titers at 978 while on 4 abx. Dr. B. switched her to Vancomycin 2 weeks ago from Augmentin, to no avail. Still on Zith and Bactrim per Dr. J. I discontinued the Tindamax this weekend - no change. Doing 400 billion probiotics a day and 20 bentonite clay pills a day. She is a trooper about taking pills. Last night she talked about wanting to die, it was heart breaking. Hasn't been this way since November. In a way two doctors makes it more confusing because Dr. J treating for lyme and Dr. B. treating for strep. All the while she has no outward strep symptoms, and no one sick in the family.

She cannot hold anything in her hands, bring anything home from school, touch any handles, remotes, computer keys, books, papers, toys, her bike, and even get in the pool at the hotel we stayed at. All she can do is shower many times a day (average 6-8).

What would you do?

 

I feel so much for you. We've had very similar experiences with contamination as well as the talks of dying, wishing she weren't alive. She even asked my dh to kill her. I'm so sorry for what you are going through.

 

I'm wondering about the betonite clay and when you are giving it to her relative to the abx. I've never used the betonite clay. It's supposed to help with detox, right? Is it a binding agent, like charcoal? If it is, then I believe it should not be given close in time to the abx. Our LLMD said not to give the charcoal close in time to the abx or it would just negate the effects of the abx, by binding to them and eliminating the abx from the body. Maybe this is a question to ask your do (or maybe others here can chime in.)

 

Kara

 

I am giving her clay right after school, minimum of 2 hours before dinner time abx. It is like charcoal. Last night at 4AM when I woke worrying, worrying, (like you all have I'm sure) I had the thought that I also would like to die along with her, ...my husband can adequately finish the job of raising our older two... then I tried to pray for awhile, then woke this morning with some sanity back. No worries out there, just stream of consciousness venting. Sorry so morbid, the rain in NE is not helping the mood!

Thanks for all the support everyone!

Laura

Edited May 16, 2011 by laure

[philamom]

Really, really struggling here...dd10 in tears several times a day now because she realizes she can't do all the things her friends can do. Her OCD getting worse by the day, and last night we "treated" the family to dinner at a Japanese Steak House, only to have her dissolve in tears as multiple people touched our plates and we all continued to eat off them. She was so humiliated by her tears and crazed by contamination all at the same time.

I am at a total loss, as are our doctors, as to why her ASO is over 250 and antiDNase B titers at 978 while on 4 abx. Dr. B. switched her to Vancomycin 2 weeks ago from Augmentin, to no avail. Still on Zith and Bactrim per Dr. J. I discontinued the Tindamax this weekend - no change. Doing 400 billion probiotics a day and 20 bentonite clay pills a day. She is a trooper about taking pills. Last night she talked about wanting to die, it was heart breaking. Hasn't been this way since November. In a way two doctors makes it more confusing because Dr. J treating for lyme and Dr. B. treating for strep. All the while she has no outward strep symptoms, and no one sick in the family.

She cannot hold anything in her hands, bring anything home from school, touch any handles, remotes, computer keys, books, papers, toys, her bike, and even get in the pool at the hotel we stayed at. All she can do is shower many times a day (average 6-8).

What would you do?

 

I feel so much for you. We've had very similar experiences with contamination as well as the talks of dying, wishing she weren't alive. She even asked my dh to kill her. I'm so sorry for what you are going through.

 

I'm wondering about the betonite clay and when you are giving it to her relative to the abx. I've never used the betonite clay. It's supposed to help with detox, right? Is it a binding agent, like charcoal? If it is, then I believe it should not be given close in time to the abx. Our LLMD said not to give the charcoal close in time to the abx or it would just negate the effects of the abx, by binding to them and eliminating the abx from the body. Maybe this is a question to ask your do (or maybe others here can chime in.)

 

Kara

 

I am giving her clay right after school, minimum of 2 hours before dinner time abx. It is like charcoal. Last night at 4AM when I woke worrying, worrying, (like you all have I'm sure) I had the thought that I also would like to die along with her...my husband can adequately finish the job of raising our older two... then I tried to pray for awhile, then woke this morning with some sanity back. Sorry so morbid, the rain in NE is not helping the mood!

Thanks for all the support everyone!

Laura

Laura- please hang in there. At times I felt like that as well. She WILL get better! Great support system here!!

Edited May 16, 2011 by philamom

[sf_mom]

I would stop everything but the bentonite.......... try to isolate when you re-introduce stuff.

 

Just wanted to give you another herx'ing story. Girlfriend diagnosed with Lyme, son with PANDAS/Lyme. Dr. recently switched her antibiotics to treat for Babesia five weeks ago. She has clinical symptoms of Babesia but no positive results. Since starting her symptoms have built: air hunger 'gasping for air', unproductive dry cough and literally was unable to talk due to symptoms similar to Laryngitis. She was told to stop all antibiotics last Friday due to symptom increase. Within 72 hours she is back to feeling 100% better and minimal symptoms. She most likely has Babesia due to specific symptoms and they will resume treatment probably at a much slower pace. She is waiting to hear back from the Dr. on new plan.

 

I know conceptually its hard to think of the OCD as a symptom...... but truly its similar to any increase in physical symptoms you would notice.

 

-Wendy

[sf_mom]

Well our LLMD makes it very simple for us to test. Filled out a form for 'Shoemaker Panel' and they drew blood there at office. We had all the tests listed in my earlier post done today and they have all the kits and mail off for us.

 

Sorry I can't be more helpful. Perhaps try the Shoemaker Website for form/test kit. Will most likely need to be signed off by Dr. first similar to Igenex.

 

-Wendy

[KaraM]

 

... then I tried to pray for awhile...

 

I've never been super religious, but have found myself saying the Serenity Prayer a lot......

 

Grant me the serenity to accept the things I can not change

The courage to change the things I can

And the wisdom to know the difference

 

May this work for us all....

[dcmom]

Laure-

 

I had another thought.

 

Have you ever had her tested for allergies?

 

Apparently the allergies in the NE (specifically oak- I think) are horrific this year. I never have an issue, and have been taking Claritin daily. My mom saw something on the news that people who have never had issues before, are now having problems. I have heard from a parent, that their child's allergies causes only pandas symptoms (ocd, tics), no typical allergy symptoms (runny nose, sneezing).

 

Maybe consider claritin or benadryl, and an allergy test?

 

Just brainstorming....

[laure]

Laure-

 

I had another thought.

 

Have you ever had her tested for allergies?

 

Apparently the allergies in the NE (specifically oak- I think) are horrific this year. I never have an issue, and have been taking Claritin daily. My mom saw something on the news that people who have never had issues before, are now having problems. I have heard from a parent, that their child's allergies causes only pandas symptoms (ocd, tics), no typical allergy symptoms (runny nose, sneezing).

 

Maybe consider claritin or benadryl, and an allergy test?

 

Just brainstorming....

 

 

Oh she has allergies, certainly. I have hundreds, brother takes shots, we all take a variety of allergy meds from over the counter to prescription to shots. Do you think she can take claritin at the same time as all this other stuff ...why not I guess, never thought of it. good suggestion.

Got off the phone with Dr. J's assistant ... he really wants her to stay the course, and go for PEX too. dh doesn't want to risk going off right now b/c son is home from college with pink eye and something red and painful going on in his throat - I have to agree, the timing would be dumb. When son goes back next week we might try to go off everything...

Thanks for hanging in there with me!

[lismom]

Laure-

 

I had another thought.

 

Have you ever had her tested for allergies?

 

Apparently the allergies in the NE (specifically oak- I think) are horrific this year. I never have an issue, and have been taking Claritin daily. My mom saw something on the news that people who have never had issues before, are now having problems. I have heard from a parent, that their child's allergies causes only pandas symptoms (ocd, tics), no typical allergy symptoms (runny nose, sneezing).

 

Maybe consider claritin or benadryl, and an allergy test?

 

Just brainstorming....

 

 

Oh she has allergies, certainly. I have hundreds, brother takes shots, we all take a variety of allergy meds from over the counter to prescription to shots. Do you think she can take claritin at the same time as all this other stuff ...why not I guess, never thought of it. good suggestion.

Got off the phone with Dr. J's assistant ... he really wants her to stay the course, and go for PEX too. dh doesn't want to risk going off right now b/c son is home from college with pink eye and something red and painful going on in his throat - I have to agree, the timing would be dumb. When son goes back next week we might try to go off everything...

Thanks for hanging in there with me!

 

 

Can you elaborate on the PEX. Does he think she will not get rid of toxins? PEX is so $$$$.