DD8 has foot sole pain, knee pain etc - what to do? need suggestions

[Hopeny]

My DD8 is in month 4 of treatment for missed (reading back to old bloodwork she has had for 2.5 years) Lyme, a variety of coinfections and PANDAS - she started off with hip arthritis but that went away in 60 days of aggressive abx. Now she is complaining about bad pain on the soles of her feet and knee. She has been tested for bart 3 times, by Igenex and Quest, and all are negative. LLMD said Lyme can also cause foot sole pain although this is also a symptom of Bart. She is on Doxy now but will go back on Augmentin/Biaxin when school starts to manage Strep too. She won't take motrin/claims it doesn't help. I made an appt with an orthopedist to see if he has any ideas. Today I tried Aspercream and heat, after 30 minutes she was able to get out of bed. usually it is not so bad but today was terrible. Usually one knee, today both. I am not keen on Aspercream because of the risk of Reyes syndrome but was pretty desperate today.

I gave her a medical holiday no Doxy on Friday, could this be a Herx after all this time????? after 100+ days of treatment?

All suggestions welcome please.

[NancyD]

The only thing that helped my foot pain was Rifampin. The herxing from it was bad but in a few weeks I felt so much better. DD and I both had negative Bartonella tests but there was no doubt in our doctor's mind that we had Bartonella.

 

You could take this test. They claim 99% sensitivity.

http://www.galaxydx.com/web/human-health/faqs/

 

My DD8 is in month 4 of treatment for missed (reading back to old bloodwork she has had for 2.5 years) Lyme, a variety of coinfections and PANDAS - she started off with hip arthritis but that went away in 60 days of aggressive abx. Now she is complaining about bad pain on the soles of her feet and knee. She has been tested for bart 3 times, by Igenex and Quest, and all are negative. LLMD said Lyme can also cause foot sole pain although this is also a symptom of Bart. She is on Doxy now but will go back on Augmentin/Biaxin when school starts to manage Strep too. She won't take motrin/claims it doesn't help. I made an appt with an orthopedist to see if he has any ideas. Today I tried Aspercream and heat, after 30 minutes she was able to get out of bed. usually it is not so bad but today was terrible. Usually one knee, today both. I am not keen on Aspercream because of the risk of Reyes syndrome but was pretty desperate today.

I gave her a medical holiday no Doxy on Friday, could this be a Herx after all this time????? after 100+ days of treatment?

All suggestions welcome please.

[tpotter]

Tindamax helped mine, but I was pulsing it for about a year, before I finally got complete relief. My LLMD was the one who figured out it was from bartonella.

[rowingmom]

Sole pain was also one of my daughter's symptoms although she did test PCR positive for bartonella. Rifampin got rid of it, but now with pulsing tindamax it is back. It comes and goes, appearing especially when she has been exercising heavily. Her pain only lasts for 1/2 hour at a time and then it is gone again.

[Hopeny]

Thanks all. DD also has very bad psych symptoms, so all roads lead to Bartonella I read that Lyme can surpress the other infections. The sole pain cropped up after we started aggressive Lyme abx. I am thinking about the Galaxy test but we live/LLMD is in NY, they don't offer it but I can ask a CT doctor to send in. Does A-Bart work on its own or do you need the Rifampin? Our LLMD said he likes to use Doxy/Rifampin for Bart. Since DD tested negative, despite symptoms, and she's 8, we decided to wait a bit but now she seems to have all these foot symptoms and I am starting to worry the psych stuff won't resolve. can't these kids catch a break?!

[rowingmom]

DD had an initial pronounced herx reaction to A-Bart and our LLMD was fairly certain that we could quickly move to A-Bart instead of rifampin with biaxin. No such luck. All symptoms gradually ureturned after 3 months off rifampin but still covering with A-Bart/A-L/biaxin. It took another month and a half after reintroducing rifampin to the mix to bring pain and PANS symptoms back to baseline.

 

The only breaks we seem to get are while she on 2 to 3 abx. I am not sure how long this will take. I kind of had my heart set at 1 year, but we passed that in June.

Edited July 31, 2012 by rowingmom

[Hopeny]

DD had an initial pronounced herx reaction to A-Bart and our LLMD was fairly certain that we could quickly move to A-Bart instead of rifampin with biaxin. No such luck. All symptoms gradually ureturned after 3 months off rifampin but still covering with A-Bart/A-L/biaxin. It took another month and a half after reintroducing rifampin to the mix to bring pain and PANS symptoms back to baseline.

 

The only breaks we seem to get are while she on 2 to 3 abx. I am not sure how long this will take. I kind of had my heart set at 1 year, but we passed that in June.

 

Thank you, coincidentially I have my heart set on 12 months of abx before I think about IV again. We are into fourth month of aggressive treatment. None of these choices are very attractive, are they I just continue to be thankful I have doctors that I am managing somehow to pay that will treat my daughter and these other children.

[mar]

I know this is totally of the wall but just though k would throw It in . Dd would complain of pains in her legs at night for a long time. It was either her ankle or leg or knee. There were several nights that she was up constantly crying and complaining in pain pointing to her legs. I think she was four at the time but recall at two crying and it always happened at night. It got bad with her waking up and complaining and crying that something inher legs hurt. She went gluten free and surprise all this has gone away. In her case gluten free helped her greatly!

Mar

[mar]

Just wanted to mention she got to the point that she did not want to chase ds around. She would sit there and complain that legs hurt. she didn't want to run which was very unusual for her. It freaked me out. She couldnt go around the block on her bike without being tired meaning her legs hurt. I would carry her and bike . She would ride bike and give up bc her legs hurt. She is now flying at top speed which scares me but at least she is not complaining of pain! .

Mar

[rowingmom]

@ mar. I envy you for having luck reducing pain by going GF. We are GF/CF/SugarF Paleo (well except for GF rice chex and fermented GF oats), and that was before we started abx treatment. Only rifampin in combo with biaxin has helped DD10's shin pain. She is much improved this summer; a 35 km tandem bike ride was easy for her.

[Hopeny]

Thanks Mar, that is interesting regarding the Gluten. This has pretty much all come on with the Lyme diagnosis in December, after a first ocurrence when I now believe DD acquired Lyme in 2010. To you and rowingmom I admire your perseverance with the diet, i have consdiered making these changes but due to numerous excuses - me not being much of a cook at all, me working full time with a horrendous commute and a husband that does not help at all with the kids, cooking etc - it's pretty much all on me. If I knew it would help for sure though I would do in a heart beat. I tried to cut all sugar from my lyme daughter but she has had such a horrendous year I have just seriously not had the heart to take away all sweets. However it is something I should try to figure out a way to manage.

[Hopeny]

ps rowingmom, awesome on the bike ride!!!!! gives me so much hope!!

[mar]

Who knows it might not be gluten but in my case thank goodness it helped dd. when all this started with ds I lost my job and had to try to help him. DH does not cook at all!! Everything was on me !! When I mentioned leg pain in dd he would say I have that some times. Thanks for the help.! So basically it was no help from DH but you do work so it's hard ! I cook but nothing like my mom. Changing everything for my ds was a smack In the face I was lost! But I tried. At the time I would tell my DH what to make and He called me several times b/c he was lost. He never cooked and their was stress . There is still stress now. I seriously believe he has no idea what ds could have. He doesn't !!! I always say try it for a couple of weeks and see what happens. I had a mother at my door several years back with a pen and papper saying I heard you are gluten free. I showed her the things my kids eat and and explained that it won't hurt to try on her dd who had lots of stomach pains. She went gluten free and 2 of her three daughters are celiac and going gluten free they have been growing! Another mom mentioned that their shoe size went up within a couple of months and that this mom went gluten free and she feels better. I was happy that I was able to help a family out! Ds was sensitive/allergic to 30 things plus outdoor allergies. It was scary!! I don't know how I did it! Talks about asthma and what not but he is better. Then he goes and has asthma attack with a dog in the house we were watching. Speak with DH and seg a plan. I did it on my own which is hard big it worked!

Mar

[rowingmom]

Decreasing inflammation can really help with pain and mental issues (I think this is why NSAIDS seem to work with PANDAS kids behaviour). Lyme really upregulates the Th1 (inflammatory) response, so everything we can do to decrease it has to be good. Gluten, casein and sugar are very inflammatory as are the lectins and phytates in nuts, seeds (and seed oil) and all grains - not to mention the damage they do to the gut lining (see Robb Wolfe about that). A paleo diet (see Mark's Daily Apple, Perfect Health Diet (close to paleo), Robb Wolfe Paleo Diet) helps to decrease this inflammation that our kids (and ourselves) have too much of.

 

Paleo is not hard, in fact you pretty much get to give up baking, unless you want to do some almond flour muffins (very filling) or something. There was lots of complaining at first but we now use mashed cauliflower in place of rice or mashed potatoes, or add it to some rice or mashed sweet potato to cut the amount of glucose. I tend to follow the Perfect Health Diet which does allow more carbs in the way of white rice and sweet potatoes as well as fat from pastured ghee, whipping cream (which I dilute to make milk for Rice Chex), and pastured butter - all good sources of K2. I feel the kids need these as they are growing, and really my joints feel better if I get some too.

 

Breakfast is usually eggs/left over meat/rice, I make almond flour pancakes a couple of times a week with berries on top.

 

Lunch is home-made bone stock (easy to make with a slow cooker - in the evening throw in some organic chicken stock and a bunch of grassfed bones with some meat left on it - I usually use lamb - necks are great with lots of collagen) made into some kind of soup with rice or rice noodles. I also make wraps using rice paper, kind of like an uncooked spring roll, with chicken, lettuce, anything you would put in a wrap. Or just a chicken leg and some fruit or sauteed greens.

 

Dinner is meat often wild salmon, veg, salad, fruit if needed for dessert. Ground veal or chicken liver goes into anything made with ground meat (stock here also). Rice noodles or spag. squash in place of wheat noodles/spagetti. Kale chips (made with coconut oil, not olive) are a hit. Salad dressing is home-made with olive oil, vinegar and whatever.

 

The kids are OK with all of this. My DS16 is actually appalled at the amount of pop and crap other people eat, and we have only been at this for a couple of years. Hopefully he will stick to it when he leaves home - ha!

 

My husband still insists on toast on the weekend and having his wraps made with flour tortillas, but that's up to him, I don't fight it. The rest of his diet is pretty healthy.

 

I'm playing around with fermenting veg now. Yeah probiotics!

Edited August 3, 2012 by rowingmom

[LaurenK]

This was caused by strep for me. It went away with aggressive steroid treatment.