I have 3 test-confirmed lymies in treatment, 2 "everything-except-a-positive test" lymies (because they haven't been tested), and 1 with 2 recent bouts of the flu ...5 weeks apart. This is the non-contagious kind of flu that 3 and nearly 5 year olds and immunosupressed lymies don't get.
The last 3 children started antibiotics yesterday, but it's probably not enough to kill the bacteria. It IS something and I'm thankful for that.
Amoxicillin...250 mg/tsp: 3 yo (28 lb) gets 1 tsp every 8 hours almost 5 yo (40 lb)gets 1.25 tsp every 8 hours
Doxycycline 17 yo is now taking 100 mg twice a day.
These medications are probably for 2 weeks.
Does this sound like a strong enough dose? I know it isn't long enough, but that's all I can get right now.
My llmd plans to write this local physician a letter asking him to help our family. We have no family physician at this point. Our former md moved & no one in town is accepting new patients.
There is a new md here, but I don't know much about her. She just joined the internal medicine group as a family practitioner. I may try a consultation with her.
People think I'm nuts believing ALL my children have Lyme. Oh well. My family thinks I've really lost it because I'm traveling to a doctor. Having neuro Lyme doesn't help their assessment.
Thanks for your advice.
Nancy
Posted by CaliforniaLyme (Member # 7136) on :
The Doxy dosage is weight/mass dependent!!! If your 17 year old is around 100 pounds then 200 a day should be just fine. If above, then 400 is the usual daily Lyme dose for a grown solid person!! And if your 17 year old is small you don't want their body taking that much!!!!
My daughters brain symptoms did great on Cedax which tasted nice too!!! It is a cephalosporin for kids.
I take 1500 amoxi 3 times a day!!! Less and I go downhill rapidly-
Those amoxi dosages sound fine for their size. My daughter was on amoxi and Cedax at the same time and the Cedax was MIRACULOUS with her. It brought her brain back to normal in a week and a half or so!!!!!!!!!!!!!! And she was major major neuro symptoms!!!!!!!!!! Doc J had rec'd this regime to my angel LLMD and it worked beautifully-
Sounds like you have quite a hectic life!!! But are on your way toward a smoother one I hope*)!!! I don't think you are nuts AT ALL. Lyme is a very common disease to have in reality. I would also be pretty sure they have coinfections if they have Lyme.
Best wishes, Sarah
Posted by hshbmom (Member # 9478) on :
Hi Sarah,
Thanks for your help. My 17 yo is "man-sized", so he probably needs more doxy.
My husband and these 3 children need tested for co-infections. Only 2 of my 3 newest official lymies were tested for co-infections.
I tested positive for babesia. My oldest daughter has numerous symptoms of bartonella, such as the oddly-oriented "stretch marks" and the red-cheeked rash with fevers. Frequently she has the bright red cheeks without a fever.
The doctor that diagnosed the 1st 3 with Lyme refused to test for co-infections. I kept nagging him about it, so he told us they had been tested and were negative for coinfections. UGH!!!
Thanks for the note about Cedex, the cephalosporin. Some of my chldren start Omnicef on Monday. I wonder if it's the same medicine, just a different name?
Nancy
Posted by CaliforniaLyme (Member # 7136) on :
Dear Nancy,
Different but also a cephalosporin!!!! Hope it does the same thing*!))*!! I would try and get a real LLMD bcause coinfections are so important!!!! And they are often seronegative!!!
Best wishes, Sarah
Posted by hshbmom (Member # 9478) on :
Sarah, getting a real LLMD for my little ones is my next step. I'm working on it. I have a name, but not appointments yet. I'll have to travel.
Nancy
Posted by bettyg (Member # 6147) on :
up
Posted by hardynaka (Member # 8099) on :
Nancy, are your smaller children using amoxy against lyme, if I understood well?
I find amoxy very bad for lyme treatment in general because of co-infections. I would like to know which co-infection is killed with amoxy.
If co-infections are a rule, and co-infections have to go first before lyme bacteria is eliminated, amoxy-only for me is a bad solution.
My daughter was 2.5 when she got bitten 3 times by ticks and took amoxy (total 5 weeks) last summer. I got to confess amoxy did mostly bad for her. Even if she felt a bit better in the beginning, after the last doses, she was as bad as in the beginning, with more GI issues than before.
I discovered she got candida as result, and that is very bad, specially for these little ones (difficult to do strict diet).
So in the end, I was having to treat her lyme, co-infections plus candida, which was a pain for us both as everyone here knows, candida treatment is also hard.
It took me more about 9 weeks to get her in track with herbs only (but a cocktail of herbs). Next time she's bitten with or without symptoms, I'll start directly on herbs as they're, in my opinion, much more comprehensive than amoxy-only.
If she was big enough to go on to doxy, that would be different, I think, because doxy can get more co-infections than amoxy.
If the rule was borrelia-only, I would go on amoxy too, because antibiotics are easier to give to children (herbs must come in combo to work). But where I live, the rule is co-infections.
I did mostly Buhner's herbs (andro and sarsaparilla) with a bit of dr. K's approach (with PC-Samento and PC-Noni included). For candida, other tinctures (pau d'arco) and diet. Detox too. So quite difficult to keep a schedule for these little ones (specially andro, bitter!!), but she got symptomless, super energetic again since ebd if treatment.
Selma
Posted by Sojourner (Member # 9424) on :
Hi Nancy,
I am by no means an expert, however, my daughter is 9-(60lbs) and is being treated with amox-1200mgs per day and zith-360 mgs per day in combo.
I don't know if this helps you get some perspective-- Treating kids is so hard on us parents!
Take care.
Posted by hshbmom (Member # 9478) on :
Yes Selma, the antibiotics are for Lyme...but given by an regular physician who is not familiar with the ILADS treatment protocol.
Sojourner, I hope to get these children to a real LLMD next month. I'm sure a real doctor will put them on some combination of antibiotics. Thanks for the dose comparison.
The little ones are taking their medicine like troopers. I let them get it out of the refrigerator and shake the bottles themselves. I let them hold the measuring spoon too...I think this little bit of independence helps them be willing to take their medicine. At least it works for now.
My older son is much more resistant to taking his medicine because he declares, "I don't have Lyme disease!!!!". I don't want to believe it either, but the symptoms are just too similar.
I've got to get him & his dad to a LLMD now too.
Nancy
Posted by hardynaka (Member # 8099) on :
Nancy, could you share us the treatment the ILADS doctors prescribe for the very little ones (that are unable to take doxy)??
I'm really curious what would be the normal meds for them...
Thanks and good luck with finding a good doctor, Selma
Posted by hshbmom (Member # 9478) on :
Hi Selma,
I wish I had that information....that's why I'm asking these questions....I need to know what these children SHOULD be on. drugs & doses??
See what Sojourner's daughter is taking? ...it's a combination of antibiotics. Adults are prescribed a combination of antibiotics for Lyme too.
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