RowingMom, can you please help me?

Hi there, Traveler said I should post a new thread to you.  My son was bit last year and he was treated with a month of doxy.  He started to feel sick and unwell  this year in the fall and started to have grandmal seizures along with all sorts of other lyme symptoms--almost all of them.  Of course I am getting the run around from the doctors that the lyme is gone.  But I know it's not!  I have been there myself and the lyme did come back.

So I have to wait 2 months to see an LLMD.  He was on antibiotics for sinus infections and "miraculously" his symtoms got better, and the seizures stopped for 1.5 months (before he got at least one every 2 weeks).  Of course I am convinced that the Lyme or another bacterial infection is causing his seazurs and thats why the antibiotics helped with preventing the seizures, but the doctors are deaf and they all keep saying the same thing.

What do you think is safe to give a 10 yr old kid to keep the bacteria at bay until we see and LLMD?  Also, how much?  He is 95lb and I do  not want to start making "experiments" on him and make things worse.  Also, if you have a link somewhere about treating children in a safe and not very intrusive way, please let me know.  I am concerned that giving him something in too large quantity will make things worse, and in too little quantities will not help at all.  Thanks so much!

As IHL says, boosting the immune system can help, but only if lyme/co is in the early stages, which I think your son is not. If his bacterial load is high and you start boosting immune response, he will be overwhelmed with die-off toxins (and thus increased symptoms). The immune system will need to be modulated, but carefully (Buhner's associate has recommended cordyceps for us). Elderberry might be OK, but cat's claw or astragalus will probably be too strong at this point.

I can't tell you about which abx can be used until you see the LLMD, but Buhner's herbs are very effective antimicrobials and can be titrated to a low dose (decreasing initial herxing).

Because you don't have a diagnosis and don't know if coinfections are involved, I would suggest giving Buhner's associate, Julie McIntyre a call to see which herbs she might recommend to tide you over.

http://www.gaianstudies.org/herbal_consult.html

If you can't contact her, try one of these other associates (from Buhner's facebook page):

https://www.facebook.com/stephen.buhner

2) Tommy Priester in Lincoln, MA ([email protected]);
Gordon Medical Associates in Santa Rosa, CA ((707) 575-5180);
and Tim Scott in Brattleboro, VT (Toll free: 877.591.1874 In VT: 802.246.1090)

Buhner's site is here and the protocols are listed on the left side of the home page:

http://www.buhnerhealinglyme.com/

Most of the herbs can be found in tincture form at WoodLandEssence:

http://www.woodlandessence.com/herbal.htm

The lyme protocol consists mostly of immune enhancers and not much in the way of antimicrobials. If it is an antimicrobial you feel you need, one of the better antimicrobial tinctures I have found is the combination CSA (cryptolepis/sida/alchornea) from the above site.

Start low, perhaps 5 drops 3x daily, and keep an eye out for increased symptoms indicating herxing. If herx occurs, decrease dosage. If herx doesn't occur after 5 days or so, increase by 1 drop. Go slow! At the moment we are using 15 drops 2x daily of CSA and we have been at this for a long time. Don't over do it.

Sida is a good antimicrobial as well, but the combination tincture was more effective (antimicrobial) for us.

I would also start with Japanese knotweed which is a very good anti-inflammatory (for body and brain) at low doses to begin with. Buhner recommends this herb for most inflammation and for a lot of his protocols. At the moment we are using 1/4 tsp (35 drops) 3x daily of this tincture along with 1/4 tsp 3x daily of powdered herb in infusion (tea).

If you manage to get a consult with an associate, please be aware that the dosages they give you will likely be maximum dosages for your child. Start very low and work up - SLOWLY. We have never been able to make max dosages for any of the herbs other than Japanese knotweed. We are taking only 1/4 recommended doses of everything else.

Make sure he is detoxing as much as possible. Plenty of magnesium (we use 300 mg mag citrate powder 2x daily), Epsom salt baths if he is OK with sulphate, water with fresh squeezed lemon juice and stevia a couple times daily. Lots of water to drink. A good probiotic once or twice daily away from the antimicrobial. These herbs are stong and we ended up back on probiotics because of yeast infection when we started CSA. Keep the bowels moving with psyllium husk or vit C or magnesium to bowel tolerance. But you hopefully already know these things if you have dealt with lyme/co yourself.

Edited to add - the Meriva form of curcumin is also a very good anti-inflammatory and is useful for body/brain inflammation. We use 500 mg 2x daily. Our daughter is 100 lbs.

Good for you for associating your son's symptoms with infection. This was the way I came to the decision to have our daughter tested for lyme/co - when her symptoms (psychiatric and everything) cleared with abx treatment for strep and then returned when abx were discontinued.

Good luck and keep us updated.

I have no medicinal information for you. I live in a very rural area, I had to go to a Chiropractor just to get my blood drawn for Ignex. My first appt withLLMD after my results were very positive, wasn't for3 months!! That was the earliest I could get in, it was crazy. I was told 1) Get put on a cancellation list' 2)call atleast. weekly if not more to see if there are cancellations or where you are on the list. I started out at #75, my appt was originally scedualled for Feb.12,2015 and I am now 5months into tx. Skeeky wheel gets the grease!

I am not 100% if this is true. But I was told that if you are on a course of antibiotics, like your son was (or for let's say uti, pneu., etc) and they did the basic test at the clinic (western blot) after the antibiotic tx, it would show positive for lymes? Hope he is feeling better soon......thoughts are with u!

RowingMom,

I have been spinning my head around the items you recommanded.  Their benefits sound amazing but they all have alcohol in them.  I am trilled that it is not gmo and it is organic, but... will a child get dizzy?  Granted in a few drops is not a lot, but it is something.  I've heard that some people are making tinctures with vegetable glycerin or with organic apple cider vinegar.  Also, do you think that in pill for it won't work, if I buy something from amazon?  He has a few days left of abx and I don't feel comfortable mixing the abx prescription with these alchohol tinctures because I have never done that before. 

I'm sorry to bother you again, but I am a little worried.  Am I worrying unnecessarily?  Thanks in advance.  They all sound great!  But i looked at some reviews of similar products on amazon and even the grownups seem to get dizzy and even have slurred speach from the alchohol in similar products.  How did your daughter respond with it?  Were you able to smell alchohol on her breath?  It's probably a stupid question but what if someone would think my son went drunk to school?  Probably a stupid question, forgive me, but I don't know anything about this stuff.  Thanks!

Rowingmom:

Thanks so much for your time and help. Yes, I have seen that many of the pills have magnesium stearate and I try to avoid that, of course. I also wonder how the absorption works with the pills--most likely the tinctures are better.

Everything sounds wonderful, but my son is having fits--big ones sometimes--he was on abx for a sinus infection and now he thinks he is cured and gives me a hard time about taking meds at all. I think is bartonella talking and acting up, not him :( He has not been himself. I try to just leave him alone to vent, he even pushed me a couple of times and yelled at me. My husband is having troubles understanding what is going on with my son and wants to punish him when he goes nuts, but I try to tell my husband his behavior is part of his infection.

What from what you recommended doesn't taste terrible? Can I give it to him in a tea? I want to make sure that whatever I give him, I will manage to convince him to take it. He doesn't realize how serious this is. He is actually thinking I am over reacting and he is fine. He was never tested for barto and I think he may have it. He got the bulls eye rash in august 2013. He was tested fall 2014 (on a Friday at quest) and he was negative, as he never got bit.

We have a couple of days of abx left so I have to make a decision and I don't know how I am going to make him take anything, that's why I tried to find pills because I think I could convince him to swallow a few pills, but if some of the tinctures don't taste that bad, maybe he will take them. I already bought some propolis and is mixed in organic honey. 1/2 teaspoon won't be terrible with the sugar. What can I do? My son is no longer the son I once had! He apologizes and cries afterwards, so I know he has moments of clarity and he doesn't do all this out of ill will.

I don't know how you went through all this with your daughter, but for me the hardest thing is having to deal with his fits in front of my other 3 kids, all younger than him, because they are starting to act up, too, since he doesn't get "punished" for his behavior. He is a bad influence for his siblings right now and he really aggravates my husband and all of us--and it is almost impossible to aggravate my husband.

Thanks again!

Post Edited (Simela1) : 1/18/2015 12:45:04 AM (GMT-7)