Waiting to see LLMD

[momcap]

We have to wait 6-8 weeks to see the LLMD. I am terrible at waiting. Is there anything more I can do for DS while we wait?

 

DS7 has PANDAS (ASO's in 500s, CamK 176, Anti-dopamine 4000). He is currently on biaxin and herxing. This will run out in a week. I have a 4 month supply of amoxicillin, which I'm planning to put him on while we wait for the LLMD appt. He has classic Lyme symptoms - episodes of severe chest pain, constant knee pain, elbow pain, and a whole host of other pains. He has a negative western blot, so I sent in MY blood to Igenex. IFA - IND, IGM - positive, IGG - negative (but 3 positives and 1 IND), and DNA negative. I just started reading Cure Unknown and was shocked to read about the buzzing sensation in limbs. A couple of months ago DS was shrieking at me because his arms were "buzzing" all the time. I wrote it in my journal, but had no idea this was a lyme symptom.

 

I also suspect babesia. 2 summers ago all 3 of my boys spent weeks spiking sky high fevers with hallucinations, and drenching night sweats. I rushed them into the hospital several times at 106 degrees!!! Finally I just quit bringing them in, because at the hospital they gave them both tylenol and motrin, checked for obvious infections (ears, chest, throat) and then sent us home, saying it was something viral. So I just started giving them the tylenol and motrin at home and waiting it out.

 

Is there anything I can do while we wait on the appointment? Any supps, diet changes, or anything else that might be helpful? I HATE waiting! It feels like I'm doing nothing while the infection(s) are doing who-knows-what inside my kids. (Ya, I'm panicking. )

[sf_mom]

• Good nightly binding/detox agent: bentonite clay/pills or activated charcoal pills. You can give up to 10 bentonite pill or 1/2 cup liquid at bedtime
   
  
• Nightly dose of benadryl to get histamine levels down. Often kids with mulitple co-infections have high histamines. It can take up to two weeks to start helping. We've been doing this for approximately 5 months and will stop fairly soon now that we are getting bacterial load down
   
  
• Detoxing herbs like: Bur Bur, start with 5 drops in juice morning and evening.... over several weeks increase to 15 per drops morning and evening http://www.nutramedix.com/store/pc/viewPrd.asp?idcategory=3&idproduct=13
   
  
• Good probiotic, Our Dr. recommends at least 100 billion units per day. We work with a nutritionist on gut repair and take much, much higher dosages of probiotics per day, per child, 850 billion plus.
  

 

I am sure others will have some helpful suggestions as well.

Edited January 19, 2011 by SF Mom

[JuliaFaith]

I agree with SF mom. All the detoxing you can do now with help speed up treatment later. Also, a gluten-free diet helps with inflammation which seems to be pretty big with all the infections. So glad to hear you are on your way to healing.

Edited January 19, 2011 by JuliaFaith

[momcap]

• Good nightly binding/detox agent: bentonite clay/pills or activated charcoal pills. You can give up to 10 bentonite pill or 1/2 cup liquid at bedtime
   
  
• Nightly dose of benadryl to get histamine levels down. Often kids with mulitple co-infections have high histamines. It can take up to two weeks to start helping. We've been doing this for approximately 5 months and will stop fairly soon now that we are getting bacterial load down
   
  
• Detoxing herbs like: Bur Bur, start with 5 drops in juice morning and evening.... over several weeks increase to 15 per drops morning and evening http://www.nutramedix.com/store/pc/viewPrd.asp?idcategory=3&idproduct=13
   
  
• Good probiotic, Our Dr. recommends at least 100 billion units per day. We work with a nutritionist on gut repair and take much, much higher dosages of probiotics per day, per child, 850 billion plus.
  

 

I am sure others will have some helpful suggestions as well.

 

Thank you for the great advice! I will add these things this week and see how they help. How do you get such high doses of probiotics? I got some at the naturopath's office and they have 15 bill/capsule. I can hardly get him to swallow 1 a day. Is there another product that is more concentrated, or are you just taking a lot of capsules? I have benadryl, so I will start him on that tonight. I had noticed his eyes are pink and itchy a lot. I'm sure he has some allergies going on. With everything else, I haven't made an appointment to deal with that yet. Sometimes I feel like all I do is make appointments for him. Once we're on track with the LLMD I'm hoping we will be able to drop some of the other doctors (rheumatologist, neurologist, pychiatrist, pediatrician, ENT, etc.) Hopefully I can get some bentonite clay and Bur Bur at the health store. Someone mentioned bentonite or charcoal when DS was herxing so badly on Augmentin last month. I never did get it because the Augmentin was almost done. Now I'm regretting that I never got it, so I will be picking some up first thing in the morning.

 

Thanks again!

[momcap]

I agree with SF mom. All the detoxing you can do now with help speed up treatment later. Also, a gluten-free diet helps with inflammation which seems to be pretty big with all the infections. So glad to hear you are on your way to healing.

 

I've been considering gluten-free. We had DS7 tested for food sensitivities and he reacted to casein, egg white protein, corn & peanuts. The ND was shocked he didn't react to gluten. I haven't made the leap yet, but I'm sure it would do all of us some good. DH and all 3 boys have IBS and I've always wondered if gluten is the problem. I've been holding back mostly because I don't know how to do school lunches without bread. But I guess I just have to make the leap and do it. Thanks for the encouragement!

[MichaelTampa]

The lyme treatment guidelines document available on the ILADS website, written by Dr. Burrascano, probably a couple/few years old now, provide a lot of excellent advice, some including things on supplements and diet that you can get started on now.

[sf_mom]

We use Custom Probiotics which does have a higher concentration in both powder and pill form. Powder is easy to mix with Kefir. We buy both the pills and 11 strain formula.http://www.customprobiotics.net/products.htm

 

Bentonite will help with IBS and can be purchased from IHERB. We buy 20 bottles at a time. http://www.iherb.com/Yerba-Prima-Great-Plains-Bentonite-Detox-16-fl-oz-473-ml/4789?at=0

 

Our children have similar food sensitivities: casein, egg white protein and cheese.... not gluten. We have eliminated all the food sensitivities and exchange gluten free products when convenient. We have found some wonderful products that the kids love. Its a lot easier than I thought.

[JuliaFaith]

When allergy tested, my son did not test 'yes' on any of the allergies, but when we quit gluten, his stomach-aches, at the time (before long-term illness), quit completely within 4 days. There is gluten-free bread. The last time I purchased it was at a Costco!

Edited January 19, 2011 by JuliaFaith

[momcap]

Our children have similar food sensitivities: casein, egg white protein and cheese.... not gluten. We have eliminated all the food sensitivities and exchange gluten free products when convenient. We have found some wonderful products that the kids love. Its a lot easier than I thought.

 

Corn is the worst though! It is in virtually EVERYTHING - diapers, toothpaste, fructose/glucose, they even use corn in the iodization process for table salt!!! I think the only option is to cook everything from scratch. I have the added benefit of living on a hobby farm where we grow our own beef, lamb, meat chickens, eggs, and I keep a VERY large vegetable and berry garden. We have mennonite neighbours who even grind their own flour and whatever I can't grow I buy from them for WAY less than the grocery store. Surely this can't be as hard as I'm fearing... It's time to get serious about our diet again. Oh boy!