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DD8s pain had gotten better, now after six months of heavy abx its back :( we are starting nex rx for suspected bartonella. Last night she said "mommy please help me" and there was nothing I could do. I had given her an epsom salt bath yesterday. maybe I am not using enough, it did nothing. she won't take motrin, says it doesn't help. hateful anti-lyme rheumatologist we first consulted told me "we can give her something for the pain". I said no way but now I am rethinking taking her to a rheumatologist to get some type of pain relief. I took her to my orthopedist hoping she could use Voltaren which I have used for a foot problemand is awesome but he looked it up and it said not for under 12 and he did not think a good idea. she is getting accupressure, I am not sure if it helps or not. moms/dads - what can I do to help her?

 

just want to add thankfully PANDAS stuff is almost all gone/staying away despite the fact she still has >ASO and Myco levels.

Edited by Hopeny
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What kind of pain? For joint pain, we've used glucosamine. For muscle pain, if she won't take motrin, maybe a topical analgesic like BenGay? Heating pad was a favorite for my DS, along with massages. I was also able to get insurance to cover some lymph massage therapy and the therapist taught me how to do it at home. Both kids love them and find them very relaxing. For nerve pain, perhaps a supplement that helps the myelin sheath or neuropathy? Not sure what that would be but perhaps others do.

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Thank you, It's mostly joint pain, foot sole pain, and some muscle pain, I can look into the glucosamine. The Physcial therapist told us to use cold, but the heating pad sounds good. I was using those instant heat pads becfore but stopped when the PT said cold. maybe we should go back to hot. She says nothing helps...We saw integrative Dr today who gave her some things for inflammation, essential fatty acids , Qucertin. Starting Rifampin on Wednesday, I hope that helps....

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Most of DD11's more severe pain was due to bartonella - long bone (shin and forearm), pick-like skull pain, and especially pain in the bottoms of her feet. Rifampin/biaxin cleared these significantly and fairly quickly too. She didn't have the extreme herx that she had when we first started treating lyme with bactrim and then biaxin. We added rifampin several months later, and she just seemed to improve on it. It took at least a month on rifampin to really decrease her motor/vocal ticcing though.

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Most of DD11's more severe pain was due to bartonella - long bone (shin and forearm), pick-like skull pain, and especially pain in the bottoms of her feet. Rifampin/biaxin cleared these significantly and fairly quickly too. She didn't have the extreme herx that she had when we first started treating lyme with bactrim and then biaxin. We added rifampin several months later, and she just seemed to improve on it. It took at least a month on rifampin to really decrease her motor/vocal ticcing though.

 

DS9 had chronic pains, and rifampin was our miracle drug too. He had very severe pain that would wake him up at night screaming in agony (usually knees or calfs, but it varied from any/all joints, to muscle pains and bone pain too). He also had bouts of extreme daytime pain, sometimes preventing him from being able to walk for several hours at a time. We've been lucky that ibuprofen has ALWAYS helped his pain. Some other things we have had limited success with are the heat pad and hot showers (work up the temp very gradually). But honestly, these were all bandaids until his pain cleared on rifampin. He was taking amox/zith/bactrim for lyme and bart, and when we felt this wasn't working our LLMD switched out the bactrim for rifampin. DS had a MAJOR herx when he started rifampin. By day 2 he was on the floor in agony, the next day he spiked a high fever, and then went through a classic flu-like herx. Nobody else got sick, and after these symptoms cleared he had a MAJOR breakthrough, so I assume this was a herx. He had 3 more mini-herxes, WAY less severe than the first one, always 2 weeks apart, and since then he has not had a single pain complaint. OCD and mood lability have remained though. :(

 

IMO, do whatever you have to do to manage pain and make life bearable right now, but don't lose sight of the big picture. Keep fighting to get at the root cause.

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We are starting Zith and Rifampin for suspected Bart. DD did not test positive and I was torn about rifampin but her pain continues and she has all the symptoms described, plus foot sole pain and psych symptoms. She is starting Rifampin tomorrow. I am hoping like with everyone this will help. I suspect that Motrin does take the edge off but in her 8 year old mind its still there so nothing is helping.

 

Does everyone give Rifampin with food or on an empty stomach like the instructions say? We had it compounded. I tried a dose last night to see how it was and it made me nauseous later, though fortunately the syrup tastes quite good so at last that won't be a battle.

Edited by Hopeny
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We are starting Zith and Rifampin for suspected Bart. DD did not test positive and I was torn about rifampin but her pain continues and she has all the symptoms described, plus foot sole pain and psych symptoms. She is starting Rifampin tomorrow. I am hoping like with everyone this will help. I suspect that Motrin does take the edge off but in her 8 year old mind its still there so nothing is helping.

 

Does everyone give Rifampin with food or on an empty stomach like the instructions say? We had it compounded. I tried a dose last night to see how it was and it made me nauseous later, though fortunately the syrup tastes quite good so at last that won't be a battle.

It has to be given on an empty stomach or it will not be absorbed properly. We do ours one hour before we eat in the am and then at least two hours after eating at night.

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  • 1 month later...

Low dose naltrexone has been a wonder drug for me. Pain is no longer a problem. This old drug, used in low dosages, has a very different action than the original intended use. It has anti-inflammatory action, and also helps balance the immune system. It is also used to treat infertility, as is safe in pregnancy. My MD also prescribes LDN for kids with PANDAS The video at www.LDNscinece.org explains its action.

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Hopeny, have you tried taking her to an indoor swimming pool regularly? The cool water helps DD15....think it is a combination of reducing the inflammation and swelling, also reducing the pressure on her joints. Further, swimming is a mental distraction, fun and a break from winter cabin fever!

 

You might try a YMCA if you do not otherwise have pool access this time of year.

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