hi I have an 8 year old boy who is being treated by an LLMD. He is struggling with treatment and just stopped all antibotics due to low WBC and moderate neutropenia. He seems to be relapsing fast.
Immediately complained of knee and elbow pains that results in limping and painful headaches on the sides of his head and back.
he also has OCD sxs worsening but quite dramatically after stopping antibotics his left facial twitch that has been pronounced over the last month cessed?
does this point to lyme or a particular co-infection? any thoughts will be greatly appreciated...
we have an appointment later in the week with LLMD to discuss all this but am upset watching him worsen so quickly!
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Breaking this up for easier reading for many here -
Sounds like Lyme to me. He needs treatment.
If you want to, you can pm me re the LLMD you're seeing, as I am in CA and familiar with them.
[ 01-08-2013, 08:06 PM: Message edited by: Robin123 ]
Posted by lpkayak (Member # 5230) on :
i dont know what to tell you right now. i raised 4 kids with lyme and it was hard but the youngest is 28 now so i am out of touch.
there are a lot of moms on here now with young kids...i hope they will be by to lend support
Posted by glm1111 (Member # 16556) on :
PLEASE look into treating him for parasites. They are now considered the #1 co-infection and are often overlooked even by the best LLMDs. Check out the info at Humaworm for symptoms.
Best to find a Dr.K. trained doctor who does ART testing. Dr. K. treats ALL of his patients for parasites FIRST and Lyme SECOND.
Gael
Posted by seibertneurolyme (Member # 6416) on :
Do you know if he has ehrlichia or anaplasma in addition to lyme? Those 2 coinfections can cause low WBC and it would not be a reason to stop treatment unless the count went really low.
If the facial twitch stopped off antibiotics then I think that indicates the lyme is in the nervous system and the dieoff was toxic to the nerves. You might want to consider adding some supplements to support nerves and also to aid liver detox.
It is really hard to know how hard to treat without causing side effects that are intolerable. It takes times and patience to learn what works for each person.
I am assuming the doc will retest the WBC in a week -- if it bounces back then you would simply go back on the meds but possibly at a lower dose. If the WBC does not increase quickly then you will need to rethink treatment strategy. Some people do better with herbs so that is one option to consider.
Good luck. Do not know any specific things about treating kids except that they generally recover much faster than adults.
Bea Seibert
Posted by TF (Member # 14183) on :
When my white blood cell count went low during treatment, my doc put me on Transfer Factor. It was made of bovine (cow's) colostrum.
It did the trick. Count was up in 2 weeks.
By taking this, I never had to stop my antibiotic treatment.
The count went down a few more times. At the third occurrence, the lyme doc told me to just stay on the Transfer Factor until I finished my treatment--a few more months.
This was all nearly 8 years ago. That is how long it has been since I treated this horrendous disease. I am still symptom free, enjoying my life.
The Transfer Factor really worked for me. You can ask the doctor about it.
You don't say how long your son has been in treatment. If he has been treated for some time, then it is unusual for the lyme to return so quickly. It is a slow grower and usually takes a least a month to start rearing its head once treatment is halted.
Coinfections will make a person sick right away as soon as treatment is halted. This is especially true if the coinfection has not been treated at all. So, consider an untreated coinfection. That is the most likely cause.
You may want to consider finding a better lyme doctor. Do a lot of inquiring.
Posted by surprise (Member # 34987) on :
When I hear of OCD in a child, I think of Bartonella, Mycoplasma pneumonia, or Strep.
I think your best bet is to detox- milk thistle, Transfer Factors immune as TF suggested- etc.
Sometimes ibuprofen can help the child.
Best wishes--
Posted by canadianmama (Member # 36298) on :
I wanted to wish you all the best.
I would highly recommend doing as much research as you can handle into a number of methods of getting your son well especially if he isn't tolerating abx.
If I had to start again knowing what I do now I would treat parasites, then lyme and co. & detox LOTS
My 12 year old has lyme and we have been treating for 10 months using photon treatment.
He is much improved and now we are working on parasites to try to get rid of the lingering symptoms, mainly gastro stuff and anxiety.
If you do become interested in alternate treatments I'm happy to share info on photon therapy.
Wishing you and your son all the best.
-One other tip is keep it light, laughter is a great way to get through this yucky illness. Funny books and t.v. shows have been super helpful to us.
Posted by Hoops123 (Member # 18333) on :
Hi
My son has developed low platelet count and we need to see a hematologist. I personally think it is either due to antibiotics or die off or parasites. Our LLMD has switched us to the Zhang protocol for now. My son has only tested positive for lyme but I am also concerned about ehrlichia and babesia. Best wishes
Posted by poppy (Member # 5355) on :
Low platelets probably point to ehrlichia/anaplasma infection.
Posted by Hopeny (Member # 35984) on :
You may also be dealing with PANDAS/PANS, an OCD condition including tics brought on by strep and or Lyme and other infections. (My DD8 has what I call the trifecta PANDAS/Lyme & Co/Mycoplasma. You may want to try dosing with motrin and seeing if it calms the OCD/tics. If it does this would indicate PANDAS/PANS. In which case i would recommend adding a PANDAS/PANS to your team. Also have you tested for Ehrilicia/anaplasmosis/rocky mountain spotted fever? In which case the treatment would be Doxy. Good luck I know how hard this is, I am in month 12 since DD was Dx and counting
Posted by tick battler (Member # 21113) on :
Sorry to hear this - I have twin 8 year old boys and a 6 year old girl who have dealt with lyme/coinfections. My boys got sick with lyme at age 2 and I finally figured it out and started treatment at age 4. They had abx through Dr. J for 2 years with some improvement but then plateaued and I then was able to heal them by switching to herbals which we found to be more effective and much easier on the body. I would recommend trying to see someone who follows Dr. K. The Klinghardt lyme cocktail is very, very effective at getting rid of lyme and all coinfections.
I so wish I had tried the herbal approach first but I didn't believe it could work as well as abx. If you can find someone who muscle tests or does electrodermal screening, that will really help your son so you are not shooting in the dark with regard to which infections he has and what will work on them.
tickbattler
Posted by lyme in Putnam (Member # 11561) on :
I have a friend who's son has pandas. I hope things get better soon.
Posted by lyme in Putnam (Member # 11561) on :
I have a friend who's son has pandas. I hope things get better soon.
Posted by amos (Member # 27219) on :
tick battler- I sent you a pm. I was wondering if you could give me the name of the doctor that helped your children with the herbal approach. I am located in your area. Thanks