9 days off antibiotics

[momcap]

Okay, this is mostly a therapy session for me, so feel free to skip this post.

 

We took DS7 (PANDAS) off abx last Tuesday. We only had enough to get to the LLMD appointment, but found out later that the LLMD had recently been under medical review and was no longer able to diagnose and treat lyme outside of IDSA guidelines. Crap. That was a waste of time. So with no drugs left, and having run out of doctors to beg for abx, we had no choice but to discontinue. YIKES!!! Within 24 hours DS completely fell apart. Day 1 - teacher calls to say he is extremely agitated (he only goes to school for 2.5 hours/day). At home he is agitated and aggressive. Day 2 - teacher says again how agitated he is. Day 3 - He says he is sick and feels really bad, keeps asking me to check him for a fever.

 

Now here we are 9 days out. This morning he attacked me and one of his brothers, and threatened to kill himself repeatedly. The principal calls to say he is obviously on the verge of completely losing it, and she's very concerned about his behaviour since last Wednesday (which was the day after discontinuing abx). He was extremely defiant all day long, making demands and threats, and kept telling me he feels really sick. This evening he threw chairs, broke toys, tried to break the glass in the door (unsuccessfully this time), went outside and shrieked at the top of his lungs repeatedly for almost 5 minutes, came back in and attacked me, and then tried to attack his brothers. After that he said he would jump out the upstairs window so he could die, since that's the only way he would feel better, and he actually tried to open the window. I had to attempt to restrain him since hubby was still at work, hoping he wouldn't fight too hard, since he's 54" and almost 70 pounds of pure muscle. By some miracle he just let me hold him and quit fighting. And suddenly we're back to the point where I don't think we can all live safely together anymore, for the first time since starting abx months ago. I didn't realize how much the abx were helping until we pulled the rug out from under him. Now EVERYTHING is back with a vengence.

 

I contacted an LLMD in the U.S., and we're putting together our passport applications this weekend. In the meantime the doctor has prescribed seroquel, and would like to add an SSRI after 3 weeks. He says it doesn't make any sense biologically that DS would react so strongly and quickly to the antibiotics ending, even if he has lyme disease, so it's just a coincidence. I just don't understand why abx are not considered safe, but we should load up our 7 year old child with psych drugs. That makes no sense to me. How can that be safer? But I have no choice at the moment, as we desperately need an emergency stop-gap.

 

So, I'm waiting to hear back from the LLMD in the States, and trying to keep a positive attitude. This WILL get better. Someday. Somehow. Right?

[Fixit]

 

I contacted an LLMD in the U.S., and we're putting together our passport applications this weekend. In the meantime the doctor has prescribed seroquel, and would like to add an SSRI after 3 weeks. He says it doesn't make any sense biologically that DS would react so strongly and quickly to the antibiotics ending, even if he has lyme disease, so it's just a coincidence. I just don't understand why abx are not considered safe, but we should load up our 7 year old child with psych drugs. That makes no sense to me. How can that be safer? But I have no choice at the moment, as we desperately need an emergency stop-gap.

 

So, I'm waiting to hear back from the LLMD in the States, and trying to keep a positive attitude. This WILL get better. Someday. Somehow. Right?

 

that doesn't make sense to me either!! with pandas lite..i can sometimes see a difference in 24 hours..not 100% but better and different...so why couldn't that be the same with other illnesses...never say never...there is always the first person for something or a reaction.

this presribing doc..is it your old doc, a candian doc..or the new lyme doc in u.s...

ssri's take while to kick in for alot of people if they work at all.

i am not well versed in lymes, but if its' the new us doc, maybe you want to save your travel exp. for a different one??

[sf_mom]

I am so sorry you are going through this right now.

 

The rate of relapse off antibiotics is extremely important to a well trained LLMD. It is common knowledge that if the individual relapses within the first 10 days Bartonella is likely a co-infection. The only reason I know this... is because we took DD off antibiotics at one point prior to Lyme diagnoses. She took got worse within days. I happened to mention this to our LLMD at our initial appointment. It basically the same as herxing cycles... relapse cycles.

 

-Wendy

[momcap]

I was reading another thread about Bartonella, and it fits. He has 3/4s of the symptoms, at least. I still haven't heard back from the LLMD in the U.S., so I will call again today. We started the seroquel last night and it knocked him out cold even at the tiny little starting dose of 12.5 mg. I sent him up to bed and found him minutes later curled up in fetal position, passed out cold and still in his clothes. Then this morning he said he couldn't get up or go to school because the new medicine is making him so tired. I think sensitivity to medicines is on the symptom list too. I can't wait to see the new LLMD!!!!

[mama2alex]

I was reading another thread about Bartonella, and it fits. He has 3/4s of the symptoms, at least. I still haven't heard back from the LLMD in the U.S., so I will call again today. We started the seroquel last night and it knocked him out cold even at the tiny little starting dose of 12.5 mg. I sent him up to bed and found him minutes later curled up in fetal position, passed out cold and still in his clothes. Then this morning he said he couldn't get up or go to school because the new medicine is making him so tired. I think sensitivity to medicines is on the symptom list too. I can't wait to see the new LLMD!!!!

 

 

I'm wondering, since you are traveling from out of country, whether you have recommendations for the LLMD you are seeing. Did you call one from the ILADS list or get a recommendation? It might be worth posting the state you're going to and to ask for info (via PM) about the doctor. Just don't want you to get all the way here and then find out you don't like the doc or they're not what you thought they'd be.

 

You are in my thoughts and prayers. You will get through this. Keep us posted.

[Suzan]

Trust me, I know the need for therapy sessions on here! I am so sorry you are going through this! I don't know if any herbal treatments would help fast enough. I hope you get to see the LLMD soon.

 

I have heard of people purchasing abx through pharmacy's outside the united states that don't require a prescription but I have never done that before and have no idea if it really works or how long it takes. Are you in Canada? I thought the one I had heard of was there.

 

Susan

[matis_mom]

Okay, this is mostly a therapy session for me, so feel free to skip this post.

 

We took DS7 (PANDAS) off abx last Tuesday. We only had enough to get to the LLMD appointment, but found out later that the LLMD had recently been under medical review and was no longer able to diagnose and treat lyme outside of IDSA guidelines. Crap. That was a waste of time. So with no drugs left, and having run out of doctors to beg for abx, we had no choice but to discontinue. YIKES!!! Within 24 hours DS completely fell apart. Day 1 - teacher calls to say he is extremely agitated (he only goes to school for 2.5 hours/day). At home he is agitated and aggressive. Day 2 - teacher says again how agitated he is. Day 3 - He says he is sick and feels really bad, keeps asking me to check him for a fever.

 

Now here we are 9 days out. This morning he attacked me and one of his brothers, and threatened to kill himself repeatedly. The principal calls to say he is obviously on the verge of completely losing it, and she's very concerned about his behaviour since last Wednesday (which was the day after discontinuing abx). He was extremely defiant all day long, making demands and threats, and kept telling me he feels really sick. This evening he threw chairs, broke toys, tried to break the glass in the door (unsuccessfully this time), went outside and shrieked at the top of his lungs repeatedly for almost 5 minutes, came back in and attacked me, and then tried to attack his brothers. After that he said he would jump out the upstairs window so he could die, since that's the only way he would feel better, and he actually tried to open the window. I had to attempt to restrain him since hubby was still at work, hoping he wouldn't fight too hard, since he's 54" and almost 70 pounds of pure muscle. By some miracle he just let me hold him and quit fighting. And suddenly we're back to the point where I don't think we can all live safely together anymore, for the first time since starting abx months ago. I didn't realize how much the abx were helping until we pulled the rug out from under him. Now EVERYTHING is back with a vengence.

 

I contacted an LLMD in the U.S., and we're putting together our passport applications this weekend. In the meantime the doctor has prescribed seroquel, and would like to add an SSRI after 3 weeks. He says it doesn't make any sense biologically that DS would react so strongly and quickly to the antibiotics ending, even if he has lyme disease, so it's just a coincidence. I just don't understand why abx are not considered safe, but we should load up our 7 year old child with psych drugs. That makes no sense to me. How can that be safer? But I have no choice at the moment, as we desperately need an emergency stop-gap.

 

So, I'm waiting to hear back from the LLMD in the States, and trying to keep a positive attitude. This WILL get better. Someday. Somehow. Right?

My heart goes out to you and your family. I would be totally losing with the doctor for not prescribing another round. But, (like my dh likes to say, and it totally irks me) "it is what it is." You are out of abxs... I would try some herbals (Samento and the like), homeopathy, or even essential oils (like Oil of Oregano or Thieves Oil), anything you can do to stop the downward spiral. Maybe add some ibuprofen to keep inflammation in check? And maybe think of a plan B for your other kids if things get really scary.

I still cannot get over your doc prescribing psych drugs!!! Maybe others can chime in but for the most part, from what I've read in the forum, psych meds don't really help.

[momaine]

Okay, this is mostly a therapy session for me, so feel free to skip this post.

 

We took DS7 (PANDAS) off abx last Tuesday. We only had enough to get to the LLMD appointment, but found out later that the LLMD had recently been under medical review and was no longer able to diagnose and treat lyme outside of IDSA guidelines. Crap. That was a waste of time. So with no drugs left, and having run out of doctors to beg for abx, we had no choice but to discontinue. YIKES!!! Within 24 hours DS completely fell apart. Day 1 - teacher calls to say he is extremely agitated (he only goes to school for 2.5 hours/day). At home he is agitated and aggressive. Day 2 - teacher says again how agitated he is. Day 3 - He says he is sick and feels really bad, keeps asking me to check him for a fever.

 

Now here we are 9 days out. This morning he attacked me and one of his brothers, and threatened to kill himself repeatedly. The principal calls to say he is obviously on the verge of completely losing it, and she's very concerned about his behaviour since last Wednesday (which was the day after discontinuing abx). He was extremely defiant all day long, making demands and threats, and kept telling me he feels really sick. This evening he threw chairs, broke toys, tried to break the glass in the door (unsuccessfully this time), went outside and shrieked at the top of his lungs repeatedly for almost 5 minutes, came back in and attacked me, and then tried to attack his brothers. After that he said he would jump out the upstairs window so he could die, since that's the only way he would feel better, and he actually tried to open the window. I had to attempt to restrain him since hubby was still at work, hoping he wouldn't fight too hard, since he's 54" and almost 70 pounds of pure muscle. By some miracle he just let me hold him and quit fighting. And suddenly we're back to the point where I don't think we can all live safely together anymore, for the first time since starting abx months ago. I didn't realize how much the abx were helping until we pulled the rug out from under him. Now EVERYTHING is back with a vengence.

 

I contacted an LLMD in the U.S., and we're putting together our passport applications this weekend. In the meantime the doctor has prescribed seroquel, and would like to add an SSRI after 3 weeks. He says it doesn't make any sense biologically that DS would react so strongly and quickly to the antibiotics ending, even if he has lyme disease, so it's just a coincidence. I just don't understand why abx are not considered safe, but we should load up our 7 year old child with psych drugs. That makes no sense to me. How can that be safer? But I have no choice at the moment, as we desperately need an emergency stop-gap.

 

So, I'm waiting to hear back from the LLMD in the States, and trying to keep a positive attitude. This WILL get better. Someday. Somehow. Right?

OMG, doctors never fail to shock me. THe evidence is right in front of him/her and yet they choose to ignore it. This WILL get better, but you need a LLMD on board as soon as possible. You have made the right decision. At this point, I'd probably be trying to buy drugs on-line from another country or asking relatives for old prescriptions they didn't finish. I'm never one to sit back and wait. Best of luck to you! Hang in there.

[momcap]

I'm wondering, since you are traveling from out of country, whether you have recommendations for the LLMD you are seeing. Did you call one from the ILADS list or get a recommendation? It might be worth posting the state you're going to and to ask for info (via PM) about the doctor. Just don't want you to get all the way here and then find out you don't like the doc or they're not what you thought they'd be.

 

You are in my thoughts and prayers. You will get through this. Keep us posted.

 

I did contact one from the ILADS list - Dr. M in Plattsburg, NY. I haven't heard back from her office yet. I also had a recommendation from another lyme forum for a Dr. R in Ohio. She's an MD/ND and uses an integrative approach. Please PM me with any comments on these docs, or any other suggestions, so long as it's close enough for me to drive there from South Western Ontario.

 

Thanks everyone for your kind comments to keep me going. I have regained my resolve, and I know we are going to get to the bottom of this. Today DS7 has a fever, but I think that must be a good thing. Doesn't that mean his immune system is fighting back?

[mama2alex]

Momcap,

 

Glad to hear you are so determined! I agree a fever isn't a bad thing (to a point) - my son no longer gets much of a fever, even with recent strep exposure, and I do think it means their immune systems are not behaving normally.

 

You might consider a separate post with a subject line such as "Looking for LLMD in NY" and include any other states you'd be willing to travel to. A lot of folks on this forum are from the northeast U.S., so you might get lots of good recommendations via PM.

[mandyknowles]

what doctor was this?

[momcap]

what doctor was this?

 

The LLMD who was bullied into following IDSA guidelines is Dr. B in Toronto. The Dr. prescribing psych meds is a psychiatrist, so no surprise there. When DS got wildly aggressive and suicidal I had to do something fast. I didn't have another option. I can't wait to get our passports back and get to a good LLMD as soon as possible! I would have done this months ago, except we were waiting to see Dr. B, who I had heard was a great LLMD, so I didn't think I would need to travel out of country.

[DesperateInSeattle]

I'm so sorry to hear of your battles. My son was diagnosed with PANDAS last December and also with Lyme's Disease in January. He's been on antibiotics since the PANDAS dx and is now on a battery of supplements as well. The ILADS doctor we see is the only one in our area. My only issue with him is that he charges $400/hr. and requires payment up front. Phone calls are charged by the minute. Fortunately, we've been able to get the insurance company to reimburse some of the cost, but the financial burden has been huge.

 

Regarding your recent bout after coming off antibiotics, this may just be a coincidence. My son has been cycling through good weeks and bad weeks and he has been on azithromycin and rifampin regularly for months now (since Jan.) Dr. G. has him taking several supplements to help clean his system of toxins and boost neurological healing. The PANDAS doctor, whom I recommend HIGHLY, is Dr. K. (I've had to edit this post, as apparently, I should not be giving Dr.'s names). She is a wonderful caring human being, though there isn't enough of her to go around. She started us on a specific regimen for the antibiotics which is supposed to improve absorption and reduce toxicity. Our day starts at 5:30 am with a round of Strep-free Probiotics, including Saccharomyces (a beneficial yeast)and a supplement called Lumbrokinase. This helps break down the biofilm in the gut to improve absorption. 30 min. later he gets the azithromycin and rifampin (a special dose made into a capsule by a compounding pharmacy here). 1 hr. later he gets a charcoal pill to absorb the whole mess and reduce toxicity. This is followed 30 min. later by breakfast which includes Lymplus (improves lymphatic drainage), Glutathiol (Antioxidant supplement), Vitamin D, Vitamin C, Magnesium, a multivitamin, and more probiotics. He also take Itires drops (improves lymphatic drainage)3x a day and melatonin at dinner to help with sleep. Our evening repeats the morning ritual for his second dose of antibiotics of the day and we are lucky to get to bed by 10:30 pm. I also give him Methylcobalomine shots 3x/week. Needless to say we are exhausted. The only thing that keeps me going is the "Good Weeks" cycle. My son will be cheerful and loving again. His fine motor skills return and he will draw and write and play at building things. The noise sensitivity disappears as well as his stammering and repetitive actions. It's a bliss I look forward to and hopefully, will see again soon, as we are currently in a "Bad" cycle.

 

I can only say I understand and hope your situation improves. If you can afford it, I do recommend both our Dr.s and think they are on the right track. I just wish there was an end in sight. Right now, I'm not sure how long we will have to endure this torture. I can only imagine how my 7 year old son feels when he says, "Why can't I just be normal again? Why can't I just be the way I was?"

Edited May 5, 2011 by DesperateInSeattle

[momcap]

I just wish there was an end in sight. Right now, I'm not sure how long we will have to endure this torture. I can only imagine how my 7 year old son feels when he says, "Why can't I just be normal again? Why can't I just be the way I was?"

 

I have tears in my eyes. Our kids are so amazing to endure this. I know how hard this is on me, I can only imagine how hard it is on him. We're still waiting on those passports. We saw a pediatric rheumatologist this week. He doesn't think DS has JRA, but he is interested in PANDAS. He wrote us a script for more than a year of pencillin. We just started DS back on it yesterday, so we'll see if it makes a difference as it has in the past. I got the school principal to write a letter for our doctor's appointment, indicating the dramatic change she witnessed in DS. She wrote that it was dramatic and unbelievable and that he's not even the same boy. Which is very true. I don't think this is a coincidence as he's been on and off antibiotics since August, and every time we have stopped a course of antibiotics within 24 hours he falls apart - raging and in pain. He still cycles and exacerbates while on antibiotics, but it is so much less. When he's off antibiotics he's barely able to function.

 

My heart goes out to you and your DS. Thank you for the doctor recommendations!