posted
My 2.5 yr old son's treatment is nearing the 4 month mark and he has not responded to treatment whatsoever - it's really discouraging.
We've tried various abx combos available for his age but we don't see any herx/improvement patterns at all. His pain levels/patterns are the same as before treatment.
I've heard the theory that for Lyme arthritis it may help to get the inflammation down in order to allow the abx to penetrate the infected tissues.
So I am considering asking the LLMD about adding minimal dose prednisone in addition to the abx.
Has anybody had success with a prednisone/abx combo?
I know there are many horror stories of Lyme going out of control in the presence of corticosteroids but I am wondering about any cases where it actually helped the antibiotics do their thing.
Hoping to hear any advice on this subject. Thanks!
p.s. if steroids are ruled out are there any natural substitutes that could be taken by a toddler (fish oil is ruled out as he gags/spits that out).
Posts: 655 | From USA | Registered: Sep 2007
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posted
As Lyme patients, we're not supposed to do steroids, as they supposedly suppress the immune system.
You mention Lyme arthritis, so I'm assuming your son has pain in his joints?
What's working very well for my joint and muscle pain is just taking capsules of turmeric. I get it in bulk at the health food store and dip empty capsules into the powder.
It's pretty messy if it's not capsulated, like everything gets stained yellow, so if others can suggest other ways for a toddler to take it, fine.
FYI, I also take several other natural anti-inflams, so that might be something for you to check into too. I drink mangosteen juice and noni juice, take grapeseed extract, and I hear bromelain and papain are good too.
Posts: 13171 | From San Francisco | Registered: May 2006
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posted
If you like the idea of fish oil, have you tried the Coromega packets? Mine is real finicky, but after he gave in and tried it he was happy with it. He asks for his "orange candy" whenever he sees me in the cabinet.
Tumeric is good with scrambled eggs. It's fat soluble, so important to get something down with it anyway in order to absorb the curcumin. Tumeric is pretty easy to sneak into a lot of other food dishes as well.
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Judie
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posted
Does he have hypercoagulation? That might be why meds are having trouble penetrating.
posted
No way I would do steroids ... especially with a child. Big can of bad worms.
Judie has some good ideas there.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Catgirl
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posted
It's possible he has hypercoagulation like Judie said. He could also have protomyxzoa (FL193). Symptoms are similar to babs and bart. Either would prevent meds from doing their job properly (small amount would get through).
As far as prednesone, don't do it. Way down the road it makes people worse--it weakens the immune system, and makes it much harder to fight things off (unfortunately, people won't notice this right away).
Also, I would consider parasites. The symptoms are similar to lyme. IMO, they are the cornerstone and a huge factor for lyme patients.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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randibear
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posted
I'm sorry but I would avoid steroids like the plague.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Thanks for all the replies. Maybe I won't pursue the prednisone idea.
The plan now is to order the Coromega packets and tell my wife to up the turmeric levels in her cooking.
Posts: 655 | From USA | Registered: Sep 2007
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surprise
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posted
Is the child 100% gluten free?
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Judie
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If your son has any kind of absorption issues, it won't matter what drugs, supplements are diet he's on. He won't get the benefits.
I would also consider a CDSA (comprehensive digestive stool analysis) test just to make sure nothing is happening in his intestines that could be preventing him from absorbing things.
I spent 2 years not getting the benefits of anything and just wasting away because there was something wrong with my gut.
Also, h. pylori for me had to be treated before I did any Lyme treatment.
Prednisone will set your son up for further problems. There are many other issues that may be going on.
Posts: 2839 | From California | Registered: Jul 2012
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posted
does eliminating gluten help? for inflammation or absorption?
Posts: 655 | From USA | Registered: Sep 2007
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Catgirl
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Yes!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Judie
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posted
There are several articles popping up that gluten-free helps with arthritis. It's definitely worth a try. It might not be everything though.
posted
Just wanted to help confirm your choice to avoid prednisone.
Before we realized it was Lyme my son was prescribed Prednisone by a emergency room doc. Said that the weird things that were happening (leg pain, dizziness, blackouts, headaches rashes...) could be fixed right up with a few days of steroids.
Well, after one dose we called an ambulance as he was frantic with anxiety, his eyes weren't dilating properly and his heat rate was off the charts.
From that moment on his neuro symptoms were WAY worse. Took months to get him back to where he was before the dose.
I'd also like to add my voice to the importance of diet: GLUTEN FREE, additive free, sugar free clean as you can.
All the best!
Posts: 372 | From british columbia | Registered: Feb 2012
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posted
Thanks for all the suggestions. I will definitely not be pursuing prednisone after hearing your responses.
I liked the nytimes article on diet/RA and thought it was balanced. The con article seemed like more of a desperate attempt by somebody who derives revenue of some sort from big pharma.
We started him on gluten free yesterday. Not sure how easy that will be while we are on vacation in the next 2 weeks but plan to be strict on the diet from early July.
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Razzle
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posted
Perhaps try Frankincense (Boswellia) to combat the inflammation without suppressing the immune system...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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Sammi
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quote:Originally posted by yanivnaced: My 2.5 yr old son's treatment is nearing the 4 month mark and he has not responded to treatment whatsoever - it's really discouraging.
Hi yanivnaced. I am glad you have decided against steroids. I agree with what the other posters said.
I am sorry your son is sick. Does he have congenital Lyme? If so, I don't think four months of treatment is very long if he has been sick for 2 1/2 years.
What does his doctor say?
Posts: 4682 | Registered: Oct 2000
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posted
he does have congenital Lyme. I did not ask the doctor about timeframe for him improving or getting well. I've found LLMD's often avoid answering that question because I believe that the vast majority of chronic Lyme patients never reach that remission state.
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surprise
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yanivanced, my dd has congenital Lyme. The fact that you know about it, at such a young age, is extremely fortunate.
They do get better- there are good times and happiness. There are times that are painful. There are times when you learn just hanging out being together is enough.
One nice thing about starting to heal while they are young, is they get used to it, and are more agreeable to swallowing pills, food changes, they just roll with it.
Going GF could make a good difference in the symptoms you are describing- it does have to be strictly 100% with no cheats, but so many GF options are in the grocery stores now, and you pack your own food when you go out.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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Razzle
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posted
What about applying organic coconut oil topically to his painful joints? I've heard of others doing this and it helped them (with Lyme joint pain)...
Could even add a drop of lavender or other gentle essential oil to the coconut oil if you like...make getting his joints gently rubbed a relaxation ritual before bedtime or something like that...
Just another idea...
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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