Ryan is in pain

[luvmywonderfulkids]

Hi Phil,

No, he does not eat a lot of those. Once in a while he will have a baked potato or french fries but not a lot. He eats mostly chicken! He really does not seem to be that inflammed (externally)

Sue

[PhilC]

Hi Sue,

When it comes to foods that are best avoided, even a little is too much. Just to give you a little example, a few months ago I bought several cans of Hormel “Premium Chicken Breast in Water.” I bought it to use in a thick, casserole-like stew that I make a couple of times a week. I won't be buying it again, because if I eat just half a can of that chicken I feel significantly more achy the following day, and the achiness lasts for several days (at least). Why do I react to it in that way? Because one of the minor ingredients is modified potato starch. I didn't think that a small amount of potato starch would be a problem, but I was obviously wrong.

Of course, it's possible that Ryan is not sensitive to nightshade vegetables, and potatoes are not a problem for him. However, unless you are absolutely certain that that's the case, strict avoidance is the best approach.

You mentioned that Ryan eats a lot of chicken. Is he eating any barbeque sauce, ketchup (aka catsup), or mayonnaise?

Phil

"Unthinking respect for authority is the greatest enemy of truth."
- Albert Einstein

[luvmywonderfulkids]

No we don't allow that because of the sugar and he does not like mayonaisse. We wracked our brains to see if he had eaten anything different the day before but he had not. I wish it would come on him that fast then we would kinow. For example, they have him off milk because his endoscopy showed eosiphinil or something like that, but he can drink milk for weeks and then all of a sudden his is sick to his stomach — so we don't know if it is really the milk or if he has not taken enough probiotics!

Sue

[Kim]

If he's eating one of those oh-so-convenient rotisserie chickens check the label because there is gluten in the seasoning and possibly other offenders, not to mention a ton of salt.

kim

[luvmywonderfulkids]

Thanks Kim, how are you feeling?

Sue

[PetRescue]

Hi, Sue…how is Ryan feeling? Better? And how are you?

~jen

[luvmywonderfulkids]

Jen,

Ryan is doing a little better but he is wearing braces on his hands at night and it is very painful for him.

I am a basket case! We know that he has bone damage and I don't know what to do. So much conflicting info how do you really figure it all out? The lyme docs don't believe in mycoplasma, the AP docs don't believe in Lyme, the conventional docs want methotrexate or enbrel. How do I get him treated properly and know it the right thing?

Sue

[Kim]

Sue,

I've run the gamut of seeing a multitude of doctors, each with their own spin on what's really wrong with me and it is enough to make you crazy (confirming what some of the doctor's dx was :roll-laugh:).

If Ryan was my son, I'd put all of my resources into taking him to Dr. C.  I'm biased because he's my doc and has helped me, but I can also personally recommend him because I know what he's about.

I'm fine, thanks for asking…….herxing, but I expected that. 😕

Take care…..kim

[PetRescue]

Oh, Sue, I hear ya! I'm as confused as you and just starting on this journey, so I may not be the best for advice, but I can relate!

If I'm correct, you have an LLMD now, right? But you're not seeing Dr.S until June. Do you have a local AP doc? If that's correct, I think you have to trust your LLMD for now at least. Not necessarily for the conventional drug suggestion, but as an “alternative to conventional” doctor. I know it must be hard to resist the conventional meds, but you have to decide. Google the drugs they are suggesting and see what you find. Here's what I found for Enbrel…

http://www.askapatient.com/viewrating.asp?drug=103795&name=ENBREL

SCARY!!!

It must be so hard to make these decisions, especially for your son. It makes it that much more important than for ourselves. I know it's scary to hear he has bone damage, but A Friend had some very reassuring advice/news. I do not have a LLMD, so forgive me if I am suggesting something that they do not really handle, but I think I remember it was your LLMD that suggested the enbrel, right? So if that's the best he can suggest to address the bone issues, make a decision on the meds he suggests and wait until you see Dr.S in June. Maybe he can address the bone loss differently and has a better suggestion. In the meantime listen to A Friend's suggestions as something to work on until your appt in June.

I may be completely wrong, so I hope someone else can clarify if I'm close or way off. I'm not the most well-versed on the Lyme/SD connection, so I'm not sure what is the most important to address first. I have heard members saying that by treating the Lyme, you are treating the SD as well, so it seems that by seeing your LLMD, you are doing the right thing. However it is my belief that if the LLMD is not addressing the bone loss, someone must. Granted I'm not well-versed on bone loss in children, but as a mom, that would scare the heck out of me too! Who put him in the braces, the conventional docs? Is that who is managing his bone loss issues now? If they are and all they are suggesting are the same meds, then I believe Dr.S is your next best option and you have an appt coming up, so just try and breathe!

~jen

[A Friend]

[user=1274]luvmywonderfulkids[/user] wrote:

Ryan is doing a little better but he is wearing braces on his hands at night and it is very painful for him.

I am a basket case! We know that he has bone damage and I don't know what to do. So much conflicting info how do you really figure it all out? The lyme docs don't believe in mycoplasma, the AP docs don't believe in Lyme, the conventional docs want methotrexate or enbrel. How do I get him treated properly and know it the right thing?

Sue

Sue, hard to give advice, so don't consider this advice…. but this is how my mind is working this morning: 

Since inflammation is what is thought to  cause pain and bone damage (I'm thinking this is true)….

And, since Ryan is known to have had  gastrointestinal problems longterm…. I'd make healing that gut Priority #1!

I'd talk to Ryan and tell him the game plan is not to consume any foods known to OR thought to be a culprit in inflammation/sensitivity, etc.   And would tell him he will not have to be this strict forever, but just long enough to heal his leaky gut.  (I'm thinking this inflammation has to be partly due to particles of food being able to get through a leaky gut lining, and his immune system is reacting to these particles, and sees them as “foreign.” 

(Would also get a copy of Chronic Fatigue and the Yeast Connection by pediatric allergist, Dr. Wm Crook, who became the guru of yeast-related illness in children and adults.  He has good recommendations for use by children and adults, many of them inexpensive over the counter.  Any time we are chronically ill, we can assume we have overgrowth of unfriendly organisms in our gut that have overrun and crowded out the good flora that makes our B vitamins and performs other functions.   

I'd go so far as to use NO packaged processed foods (cooked or uncooked) — neurologists have written that the ingredients in these can cause all sorts of neurological problems as well, especially in children.  Desperate problems demand desperate measures!   

 I'd be thinking I would not use any milk products, except a high-quality yogurt, which is thought to be different in that it is cultured  (the best ones for us have no sugar added, etc.) and purchase from the health store milk substitutes like Rice Milk (unsweetened) OR Almond Milk (unsweetened) — these taste good, too — and also helpful would be to  include a source of liquid EFA's (essential fatty acids: flaxseed oil or high quality fish oil from Carlson's or similar place… this liquid fish oil tastes good, a bit lemony — EFA's are essential for healing), also lots of probiotics daily.  (The flaxseed oil/1 to 2 tablespoons of ground flaxseed for fiber/yogurt/powdered Multidophilus by Solaray probiotics, with chopped apple or other fruit included became my secret weapon when I was in a terrible wasting syndrome back about 1998, when my gut lining apparently became unable to absorb nutrients.  I looked like the poor concentration camp victims while eating as much as my spouse … and ended up looking like the picture of health… now, I can't argue with success being due to use of that concoction … though I realize we are all different.)

There's more, but will stop here.  Got to run and pack.  Good luck to you and Ryan.  Forgive me if I've overstepped with my passion for hoping to get us well! 

AF

Would not consume nightshade vegetables, and no gluten grains — gluten is found in so many processed foods, and even a little of these can really irritate Ryan's already sensitive gut problems.  There are many other grains that are gluten-free.  Drug Emporium in our town now has a large gluten-free area.

[Author]

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