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Update on son four weeks after lyme treatment


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Thursday will be four weeks since my son's first lyme appointment. The doctor prescribed 2000 mg of amoxicillin to be added to the 1000 mg of Biaxin that my son was already on for PANDAS. The 2000 mg of amoxicilllin was added at only 1000 mg for the first week to help with herxing. So he has been on the 2000 mg full-dose amoxicillin for three weeks on Thursday. So far my son is no better at all. He is still incapacitated for the most part. He is sleeping well and happy and talkative which have been the result of the homeopathic remedy he is also on, but his OCD is as bad as ever. Everything is a major chore--walking, dressing, eating, tying his shoe. We are discouraged to say the least.

 

We will go back to the lyme doctor a week from Friday and he will add another antibiotic (rifampin I think). I was wondering if anyone has any thoughts. Shouldn't we have seen some improvement of some kind by now? Thank you.

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Thursday will be four weeks since my son's first lyme appointment. The doctor prescribed 2000 mg of amoxicillin to be added to the 1000 mg of Biaxin that my son was already on for PANDAS. The 2000 mg of amoxicilllin was added at only 1000 mg for the first week to help with herxing. So he has been on the 2000 mg full-dose amoxicillin for three weeks on Thursday. So far my son is no better at all. He is still incapacitated for the most part. He is sleeping well and happy and talkative which have been the result of the homeopathic remedy he is also on, but his OCD is as bad as ever. Everything is a major chore--walking, dressing, eating, tying his shoe. We are discouraged to say the least.

 

We will go back to the lyme doctor a week from Friday and he will add another antibiotic (rifampin I think). I was wondering if anyone has any thoughts. Shouldn't we have seen some improvement of some kind by now? Thank you.

Everyone is different. My dd improved a little the first month, then really struggled for the next 12 weeks before finally beginning to improve again. That also followed IVIG #6, I think. Me personally, certain things improved over night, certain things over the course of a few weeks, and I've been struggling with other sympoms for months. I'm on Rifampin too. Supposed to take it on an empty stomach. It makes my mouth taste horrible and I now chew gum a lot. The Flagyl I'm on has been the real killer. I can only take one day a week so far. It's far too early to give up. Our dd said it could take 16 weeks to 6 months to see improvement if they have a high spirochetal load. :(

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Momaine -- Thank you for your response. Do you think there has been no improvement yet because my son hasn't started rifampin yet? He is only on biaxin 1000 mg. and amoxicillin 2000 mg.

 

Have you read about herxing? As the lyme bacteria die off, they release toxins in your body that cause a worening of symptoms. (its the toxins they release when they are alive that cause symptoms too, but they release more when they die) Herxing can vary in how long it lasts. It depends on your spirochetal load. Has your son had lyme for a long time, do you think? (I don't keep people on here straight, too much to think about) Has he taken Prednisone for long periods in the past? Are you doing things to help his body detoxify? All these things will play a part in how long herxing lasts.

 

My dd had lyme/bart for almost 5 years before we figured it out. She'd been on prednisone for a couple of significant stretches. The dr. felt like her herxing lasted so long because she probably had a very high sprichetal load.

 

I, on the other hand, probably had lyme for at least a year and a half. I felt better in some ways right off the bat (12 hours after starting high dose antibiotics)but other things are taking longer to resolve and some things are worse still, like the fatigue.

 

Of course, the Rifampin will address the Bartonella more and that might either make him feel better or it could cause more herxing and make him feel worse. I felt worse at first but within a two week period, I felt much better.

 

Unfortunately, this is a difficult bacteria to fight and it can take time. It reproduces slowly, which actually makes it harder to kill. (fewer killing opportunities because it is when it is reproducing that the drugs can affect it most...or something like that)

 

Don't give up! It will come in time. Adding drugs one at a time is a good idea to minimize herxing. Hang in there.

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My DD9 started biaxin and bactrim on 7 June for lyme/bart. Herxing began 1 week later, and symptoms showed no improvement for at least 1 month. Fatigue and pain were pretty bad, and we had to use a wheelchair for trips away from home. When her Igenex test came back indeterminate for lyme (IGg 34 Ind, 39 Ind, 41 ++) and positive for bartonella the LLMD switched her from biaxin to samento/banderol for lyme. DD then developed an allergic reaction to bactrim and was off ABX for approx. 2 weeks (LLMD was on vacation) before starting rifampin. During that time her symptoms calmed down and were definately better than before the start of treatment. We had obviously not been able to see improvement for the herxing, but improve she has. I have been expecting herxing to ramp up again with rifampin, but so far it has not been too bad.

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Some when starting Lyme treatment trend better almost immediately and some do not...... I wish it had been the later for your son providing hope and confidence you are on the right path. However, typically an LLMD is only looking for 2 days of improvement over the first 6 weeks of treatment. AND, unfortunately it can take months to see 'notable' improvement. I have many, many examples of it taking months for some kids and Momaine is correct that there are several issues that could cause a slower response to treatment. i.e. prior extended steroids use or IgA deficiencies.

 

Sooooooo, an example that is near and dear to my heart:

 

Our younger DS is diagnosed with Babesia, Bartonella, extremely high Coxsackies titers, HHV6 and Immune deficiencies. We believe the Lyme is there but his bloodwork is currently negative. These infections were handed to him at birth and why he remains serologically negative for lyme. He was started on Azithro in November 2009 thinking PANDAS due to high CAM and older brother's diagnoses. At 2 1/2 years old his predominate symptoms were OCD, rage behavior with many Autism traits, etc. Dr. K - PANDAS Dr. felt Asperger. We saw immediate improvement with the Azithro and had a wonderful 8 month stretch with no recognizable OCD or rages. August of 2010 he started Lyme treatment and typical of herx responses we saw the return of OCD and rage behavior that would last about two weeks after rotations. About 5 months ago we started Rifampin with him to treat Bartonella more directly...... he has been worse since. Now we have daily OCD, mood liability 'not really' rages, severe sensory issues and are fearful he will be unable to attend preschool in the fall. He gets stuck a lot and we accommodate. We see our LLMD approximately every six weeks and we have made the choice to continue with rifampin knowing 'he will be worse but we are really going after Bartonella'. This has not been a fun process and if I didn't have a good grasp on herx'ing (due to 3 children with lyme) I would have become a non-believer. There are signs and they are minimal and unexpected that I recognize as improvement. He is more socially interactive, has willingness to eat different foods and proud of the fact, his rashes are a bit better, his IgG 3s are now normal for his age, his strep pneumo deficiencies have been turning around... We do a ton of detox, recommended supplements and viral protocol too. Unfortunately, it is 'just' time he needs to get the bacterial load down and heal. If I knew a shorter or better treatment process.... trust me I'd be posting about it. I don't, sorry.

 

I hope you hang in there... progress really needs to be looked at in months and years along with potentially several antibiotic rotations 'sometimes the antibiotics are just not right'. I am sure others will post with similar experiences. Plus over time your LLMD will help you figure out if there is viral component, mold issues, allergens, KPU, etc.

 

Another notable phenomenon: Our older son always herx'd with an increase in TICS and mood liability with Lyme treatment (OCD resolved 18 months ago).... Now that he is doing much better he herx's with more traditional Lyme symptoms of being physically ill, headaches, joint pain, etc. and its taken two years to get to this point between Lyme/Pandas treatments.

 

 

-Wendy

Edited by SF Mom
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It's quite possible you will see changes when you add another abx. If so, that would be great.

If you don't and you still feel lyme is at play, then there are two "hot topics" people here are exploring as possible reasons for the stalling/lack of progress our kids are making. One is mold and the best introductions are here:

http://www.survivingmold.com/diagnosis/the-biotoxin-pathway

http://www.publichealthalert.org/Articles/scottforsgren/biotoxin%20pathway.html

 

The other is a condition called KPU (which is a mineral/vitamin deficiency that leads to a heavy metals problem) or pyroleuria (same deficiency without the heavy metals issue). One primer on this is http://betterhealthguy.com/joomla/images/stories/PDF/kpu_klinghardt_explore_18-6.pdf

 

One final possibility is the role of biofilms, which can protect the spirochetes from massive levels of abx. Plaque on your teeth is a biofilm of mouth bacteria. Very hard to eradicate once established. Same thing with lyme. Here's a very very long but fascinating discussion on biofilms (not lyme specific) http://bacteriality.com/2008/05/26/biofilm/

 

All this to say...you may just need the rifampin, or there may be other trails you need to investigate. As you know from Pandas, there's no cookie cutter solution, no simple answers.

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He is sleeping well and happy and talkative which have been the result of the homeopathic remedy he is also on, but his OCD is as bad as ever. Everything is a major chore--walking, dressing, eating, tying his shoe. We are discouraged to say the least.

 

 

sorry to hear christian mom! haven't had a chance to read the responses but wanted to jot a message -- who/what type of hoempathic practicioner are you seeing? have you discussed with them? i admit i'm not so knowlegable about differences of abx. we are seeing an integrtive MD who treats with homeopathy. he mainly uses sequential homeopathy using the remedies in a similar mehtod to abx to clear infections. when warrented he uses a consitutional rememdy, which for ds7, i bleieve is same as your ds -- hyoscyamus - ?.ds7 is mre complicated case and has taken longer but is currently doing quite well. ds9 has seen very good results in relatively short time - 7 mths, total now -

 

perhaps an adjustment of homeopathy could help - ?

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Thank you everyone for your encouraging and thoughtful comments. We are not ready by any means to give up, just discouraged--our son has been sick a long time. My son has tried three homeopathic remedies--stramonium, hyoscyamus, and phosphorus. All of the homeopathic remedies have helped my son sleep and the last one (phosphorus) noticeably affected my son's mood in a positive way. But none have helped his OCD. They only help him HANDLE his OCD better, if that makes sense. So in other words, he is now happy, well-rested and talkative, which I am grateful for, but still almost incapacitated--struggles with everything.

 

We will be trying a new remedy on Friday. The homeopathic doctor has been wonderful. He has spent a lot of time with my son and really cares about him. He doesn't care whether my son has PANDAS or lyme, because he feel the homeopathic remedy should work no matter what the root cause. I think ultimately the homeopath may be the one who helps my son simply because he has taken him so personally. I have never seen a doctor give so much time to one patient.

 

I am not sure how long my son has had lyme if it is truly lyme. His first signs of OCD were about age 5 and he is now 16. His real problems started a year ago. He has been on prednisone 3 times -- 5-day 60 mg. burst, 30-day 80 mg. taper, 10-day 100-mg. burst. The first time he was dramatically better for 2 days. The second time there was no change (I suppose because it was a taper and not a burst), and the third time it gave him two days of noticeable relief. We are not allowing my son to have any more prednisone. It really isn't worth it.

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Thursday will be four weeks since my son's first lyme appointment. The doctor prescribed 2000 mg of amoxicillin to be added to the 1000 mg of Biaxin that my son was already on for PANDAS. The 2000 mg of amoxicilllin was added at only 1000 mg for the first week to help with herxing. So he has been on the 2000 mg full-dose amoxicillin for three weeks on Thursday. So far my son is no better at all. He is still incapacitated for the most part. He is sleeping well and happy and talkative which have been the result of the homeopathic remedy he is also on, but his OCD is as bad as ever. Everything is a major chore--walking, dressing, eating, tying his shoe. We are discouraged to say the least.

 

We will go back to the lyme doctor a week from Friday and he will add another antibiotic (rifampin I think). I was wondering if anyone has any thoughts. Shouldn't we have seen some improvement of some kind by now? Thank you.

 

 

Our dd is on a different abx regimen but her OCD was VERY severe. So bad we were applying for an intensvive program in January, we had already been on abx since april 2010. We added another abx in Jan/Feb but we are JUST now (over last 4 weeks) seeing the greatest improvement in OCD. I have also just posted a topic on the flare patterns which may be helpful to you. I have found patience, and faith to be absolutely necessary in her healing. In our darkest depths I "TRULY' learned to live one day/moment at a time. I feel it was a lesson learned. It sometimes took us up to 6 wks to see the abx doing any good when we would try to stop them.

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