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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?

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I do understand your troubles.

We have been fighting strep.

I have high strep and so does Pandas daughter and my 2 other children.

ASO continues to drop for Pandas daughter on AUG XR for 2 years, never has been normal.

I think ASO is around 400 and dnase 250ish. (testing over 1 1/2 year period)

My ASO and other daughter (PANDAS range 160 no symptoms) rise and fall between 900 and 500. Our DNase hovers around 300.

That being said I need a Strep dr and cannot find a specialist.

Also I have tested positive for lyme and I am being treated. Will that cause strep symptoms to fall back into normal range.

My children will be seen by LLMD in 2 weeks. Is this going to help with strep? I dont know. Has it been LYME all along?

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What would you do?

 

you're asking, so I would ask dr's if we should investigate if there are viruses at play as well. you seem to be in quite capable hands in the medical field, you seem to have bases covered as far as treatment for bacterial infections.

 

just my opinion, but i think viruses may be an underinvestigated source of trouble. i know it's incredibly frustrating to keep searching for every possible, crazy trigger!

 

good luck and i hope things settle down!

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My dd's ASO titers have hovered in the 500's for two years (down from 1200 at dx) & Dnase is still above 200. The LLMD we spoke with a few weeks ago recommended meeting with an ENT and pursuing removing her tonsils. He told us he has started exploring the strep connection with Lyme and has been surprised that 300 and some of the over 400 patients he has tested have come back with high ASO & Dnase. Five of the children he has treated have had tonsils removed with 4 having complete recovery & 1 at 70% (also being treated for Lyme).

 

We are meeting with an ENT June 2nd to explore this option. Not sure how I feel about it yet. My dd has been through enough surgeries in the last two years & I really don't want to "elect" to do another one. However, I definitely feel that we have not totally eradicated the strep with abx & IVIg.

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laure-have you spoken with Dr J's office recently. I'm just wondering if the Bactrim was prescribed for the lyme and Bartonella? Does the Bactrim cross the BBB? My dd is on Minocin for the co-infection and was recently increased to help with ocd. Also, is she worse in symptoms since the bent pills and large probiotic dose? Is it too much in detox, but not enough drainage. This is not coming from my experience - just remember reading how important it is to rid of the critters after detox.

I would call and see if you can get in earlier for your follow-up. Thinking of you!!

Edited by philamom
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So sorry to hear this.

 

One thought -- We are all strep carriers in our house, but when I got actual strep this winter, penicillin didn't help. They put me on cephalexin and that did it.

laure-have you spoken with Dr J's office recently.

I'm just wondering if the Bactrim was prescribed for the lyme and Bartonella? Does the Bactrim cross the BBB? My dd is on Minocin for the co-infection and was recently increased to help with ocd. Also, is she worse in symptoms since the bent pills and large probiotic dose? Is it too much in detox, but not enough drainage. This is not coming from my experience - just remember reading how important it is to rid of the critters after detox.

I would call and see if you can get in earlier for your follow-up. Thinking of you!!

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laure-have you spoken with Dr J's office recently. I'm just wondering if the Bactrim was prescribed for the lyme and Bartonella? Does the Bactrim cross the BBB? My dd is on Minocin for the co-infection and was recently increased to help with ocd. Also, is she worse in symptoms since the bent pills and large probiotic dose? Is it too much in detox, but not enough drainage. This is not coming from my experience - just remember reading how important it is to rid of the critters after detox.

I would call and see if you can get in earlier for your follow-up. Thinking of you!!

 

Bactrim was prescribed for suspected bartonella. Not sure if it crosses the BBB but the zith she is on does for sure. Not sure if she is worse in symptoms since probiotics and detox...I have been increasing those all along from info on this forum since January. Do you think that could make things worse? What exactly would consitute drainage? She won't take baths or put on deoderant or patches or anything like that.

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If she won't take baths, and you want to help with detox, you could try the magnesium sulfate cream from kirkman, and put it on her when she sleeps. (It goes on cold, though, and leaves a residue, so it might not work for her. My son hated it when we used it, but he was 7 then).

 

laure-have you spoken with Dr J's office recently. I'm just wondering if the Bactrim was prescribed for the lyme and Bartonella? Does the Bactrim cross the BBB? My dd is on Minocin for the co-infection and was recently increased to help with ocd. Also, is she worse in symptoms since the bent pills and large probiotic dose? Is it too much in detox, but not enough drainage. This is not coming from my experience - just remember reading how important it is to rid of the critters after detox.

I would call and see if you can get in earlier for your follow-up. Thinking of you!!

 

Bactrim was prescribed for suspected bartonella. Not sure if it crosses the BBB but the zith she is on does for sure. Not sure if she is worse in symptoms since probiotics and detox...I have been increasing those all along from info on this forum since January. Do you think that could make things worse? What exactly would consitute drainage? She won't take baths or put on deoderant or patches or anything like that.

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laure-have you spoken with Dr J's office recently. I'm just wondering if the Bactrim was prescribed for the lyme and Bartonella? Does the Bactrim cross the BBB? My dd is on Minocin for the co-infection and was recently increased to help with ocd. Also, is she worse in symptoms since the bent pills and large probiotic dose? Is it too much in detox, but not enough drainage. This is not coming from my experience - just remember reading how important it is to rid of the critters after detox.

I would call and see if you can get in earlier for your follow-up. Thinking of you!!

 

Bactrim was prescribed for suspected bartonella. Not sure if it crosses the BBB but the zith she is on does for sure. Not sure if she is worse in symptoms since probiotics and detox...I have been increasing those all along from info on this forum since January. Do you think that could make things worse? What exactly would consitute drainage? She won't take baths or put on deoderant or patches or anything like that.

I think a phone call to his office would be a good idea to check about the bactrim. I don't have any experience with the supps that support drainage...hopefully Jodie will chime in. I just mentioned it because in our situation when I add in a large quantity of supplements, it often leads to increased behaviors. Just my experience...don't know enough about it.

 

I would call Dr. J and update him with your situation.

Edited by philamom
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Laure-

 

A few thoughts- take what you like :)

 

First- I am SO sorry. Both of my girls prevent with ocd, so I KNOW how hard it is. Hard to see them live so tortured, and hard to have NO life yourself.

 

My girls both had strep recently. I stopped all meds and did clindamycin and probiotics for 14 days. It seemed to clear the strep. They both have had a bump in symptoms, but so far, somewhat manageable. We did do steroids for older daughter post strep recovery, and she is in a MUCH better place than her sister, who we are considering steroids for now. I know you tried a 1 wk burst, and you probably don't want to do more steroids. But I am thinking if you are fearful there is strep somewhere, you might want to try a course of clinda.

 

I think I read Pandas16 saying that a doc told her Bactrim is not a great choice for people with autoimmune disorders- maybe she will chime in- or you can check with her.

 

Has she been sick at all recently- a cold, allergies? Lost teeth?

 

I have found that, for my girls, the trigger is a quick event- which doesn't hang on- but once the autoimmune process starts- it doesn't shut off without medical intervention. This is a cluster$#@% , that is ALL I can think of, because I know if there is chronic lyme- steroids are contraindicated. So, if there IS chronic lyme, then theoretically you need to treat and rid of the lyme, and may still have to stop the autoimmune process. This is why I have decided to continually address the autoimmunity, lyme or no lyme. BUT- my kids really have NO physical symptoms of lyme, and have been able to have long remissions- so that is why I am skeptical of lyme.

 

Anyway- I really feel for you. I would BADGER these docs until they give you some things to try-

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Laura, Azithro does cross BB but only in small amounts and only helps Lyme in its active form... not cyst form. When you switch to something that attacks both cyst form, cross BB and attacks all form of Lyme you do get a tremendous herx response that last weeks. I am not sure how the Bactrim works.... but I do know that CEDAX crosses the BB and kills lyme in all forms, Alinia acts as a cyst buster, anti-parasitic, anti-viral, etc. We had extended herxes when both of these antibiotics were added at different times. Another family had a similar response to Bactrim and 8 weeks into treatment they were much worse, were confused over the increase in symptoms, went on to do hdIVIG and got even worse. It was 6 months, suspension of all antibiotics and a Dr. change before they started to see improvement again.

 

I am not sure why vanco was added to azithro because I believe they are of the same family of antibiotics and you really need to question the MORE and NOT less perspective or different antibiotics in combination together. I am in a little hurry and off to see the Dr. for similar high ASO of 244 and anti-DNase-B titers 980 in husband (not symptomatic for anything). Remember ASO measures strep A and anti-DAase-B measure more then just group A strep titers so it could be a combo of different strep infections.

 

I am really pushing for you to suspend antibiotics to confirm herxheimers response. I would call Dr. J and ask how long he would like you to stop for to confirm.

 

I will report back later if I learn anything new regarding husband titers.

Edited by SF Mom
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So confused, we could go off everything for a couple of days, it certainly cannot hurt things, but with strep in the mix it really cannot help either, can it? I can alert Dr. B but he will probably go for steroids and a new abx. Dr. J wants increased Vanco, (3 x 250 mg /day instead of the 2x she is on now) as of last week, but I haven't spoken to him this week yet. Want to see ART doc, but will any of these docs listen to that diagnosis?

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Just my two cents here, when my dd had "just"pandas we had her toncills and adenoids removed. She was 100%back for nine months. No more OCD or tics. No meds. Just normal. Then it all came back when the Lyme and other tbi came into play. For us those nine months were really a wonderful luxury. Dd had pandas for two and a half years prior to the t and a. Her symptoms disappeared immediately. Dr j thinks she had strep in them that couldn't otherwise be eradicated.

 

I'm so hopeful that we can get back to symptom free. At least the nine months gives me hope.

 

I'm really sorry for what you are going through. Our situation is so similar in regards to OCD. My parents came this weekend and dd wouldn't get any where near them. Right now I'm the only one that doesn't seem to contaminate her. I'm fearful that may change too. She acts like she hates everyone else but it is really the OCD. I wish my extended family really understood and didn't take it personally.

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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!

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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.

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