When to keep pushing for Lyme?

[cara615]

Ok so as we all know those FB groups can get a little nuts. People posting advice totally based on hearsay and what not. Its sometimes frustrating trying to weed through the folks to get to the posts where people actually know what they are talking about. What i like best about this group is that you ladies/gents are 1) totally respectful 2) really knowledgeable and 3) are gentle with the advice.

 

My question is how far should I push for a Lyme diagnosis? the women on the FB pages make it seem like i should keep testing until i get a pos dx. And even if i don't still treat for Lyme!!!

 

DS was tested through Labcorp. I know, I know its not IgenX. But he didn't get a single pos or IND band. He had also been on abx for 6 months prior to the test. His immune function is also in the normal range as far as all his levels of IgG, IgM, IgE etc. etc.

 

He has no Lyme type symptoms, just tics.

 

Now, I will say we live in GA and visit NY every summer. We love hiking and we have been on Fire Island (not hiking in the brush, just on the beach but still). I have never found a tic and there was never a rash. I know that doesn't matter but i just want to point it out.

 

I also never have had any typical symptoms of Lyme. I only suffer from a rare and mysterious disorder called Achalasia which they think is autoimmune in nature but don't know what the trigger is. I got this when I was 17.

 

Hubby has bad seasonal allergies. That's it.

 

Right now we are treating his gut and treating his brother (non-PANS) for a prolonged strep infection. DS is doing great, best he has been in MONTHS!!!

 

Minimal ticcing. Right now all I see are a couple of arm shrugs. NO VOCALS!!!!!!!!

 

Can i put Lyme on the backburner for now or should I order that IgenX test ASAP>??

[Hopeny]

Cara based on the above why are your concerned about Lyme then? I will say I think many maladies are misdiagnosed as Lyme (CFS, Fibromyalgia, even MS in some cases) BTW there are tick borne illnesses in every state except Alaska as far as I know.

Personally if my kid was doing really well I would just monitor and that's it,

[cara615]

Hopeny I'm actually not concerned about Lyme but every time i post on one of the FB groups, i get bombarded with people telling me i need to test for Lyme and that my negative result from Labcorp is not sufficient. its just kind of freaking me out.

[nicklemama]

You just have to ignore all that. If your child is doing well and has no symptoms there's no point I testing and spending the money. If your child continually relapses and/or fails to get better over the course of time, then you have reason to test. Don't engage in debate. It's your child so there's no debate to it.

 

Here's an example of why they don't like Lab Corp. my son was tested thru Quest. He had on band positive, 45. One year later, he was retested with Igenex. He had 5 bands positive IgG and one band positive IgM thru Igenex. Igenex tests for two strains of borrelia. Quest and Lab Corp test for only one strain. Igenex tests for more bands. Some of the bands were used in conjunction with the lymerix Lyme vaccination so they were dropped from consideration under the idea that anyone vaccinated would automatically test positive. That's true. However, the Lyme vax was pulled due to safety concerns and the bands have never been added back in through traditional testing labs.

[Mayzoo]

I would say if you suspect he may have Lyme, then pursue the testing when you are able and ready to treat.

 

In our case, I must prioritize what I treat. Kiddo is positive for EBV, HHV-6, almost all the Coxsackies, high varicella titers and low immune functioning. She may have lyme or a co-infection, but I am not sure. I cannot put her through treatment for everything all at one time. Her liver and her system cannot handle that. So I am going after the above viruses first, and trying to modulate the immune system along the way and will continue immune system therapy for a long time. When we get the viruses under control, then I will consider extensive testing for lyme et al and treating if needed. I do not believe she has many symptoms of lyme et al, but she is riddled with symptoms related to these viruses.

[Hopeny]

Hopeny I'm actually not concerned about Lyme but every time i post on one of the FB groups, i get bombarded with people telling me i need to test for Lyme and that my negative result from Labcorp is not sufficient. its just kind of freaking me out.

I'm probably one of the first to ring the lyme bell and yes labcorp is not the best ( no western blot is really definitive anyway) but if it ain't broke for now I think personally I wouldn't try to fix it. People dealing with Lyme go years of being misdiagnosed so I can understand why it creates a lot of passion around being adequately tested, but LLMD's in my experience only treat symptomatic patients, as parents having been through so much I say enjoy your moments of mostly peace right now.

[pr40]

here is another no, if you need one more. no symptoms, no lyme tests.

[PowPow]

hopeny gave you good advice.

I just posted a bit on the Hashimoto's Encephalitis thread about this Lyme issue, if you want to read it.

 

I would also like to point out ( and dodge tomatoes, verbal daggers and whatever else may be tossed my way) that many people who are posting about their "positive" diagnosis for Lyme have many avenues that they have used for testing.

Some are medically tested (blood, body fluids, etc), but many are tested by "muscle testing", ART and many other things- that have very little scientific background.

[SSS]

Pow pow, thanks for sharing your story on the Hash. thread-

what an amazing recovery your daughter is in- I got very hopeful.

She is quite lucky, you worked very hard for her-

Pex, IVIG's, extended antibiotic treatments, steriod treatments,

and seeing top specialists.

I can't imagine what that must have cost-

did your insurance cover all of it?

Flying, traveling-

I can't offer all you've given your daughter. My family has already sacrificed quite a bit.

 

As far as steroids and Lyme, hey, if steroid burst pulled my kid back to content and happy,

that's the goal. It didn't for us, but a 2nd HD IVIG did-

until it wore off 6-8 weeks later. Was paying cash out of retirement fund.

Neurologist on Friday suggested a find a specialist to do monthly IVIG's,

and fight my insurance company to approve them all. Said I'd probably have to fly out of state.

Then shrugged shoulders at me.

At PANDAS West Coast symposium an excellent video I watched gave a reminder of the 10's

of thousand blood donor's involved in an IVIG- and what are they able to test and really clean that product?

 

 

Cara, 2 LLMD's told me: no symptoms, no treatment, even if a screaming positive test-

You sound in a pretty darn good place with your child- I agree with others, I'd try to stay as healthy as possible, keep a close eye, and try and live some life, regain some normalcy.

Because this whole thing can really take a family down-

[qannie47]

Cara: I remember being in the exact same place that you are now. I get "wanting to cover all bases". My Ped's doc (he dx my child), talked me out of it citing similar reasons listed in above posts. I decided not to test. I figured if he spiraled down in the future, I revisit the idea. So far so good...That being said, if it keeps bugging you, and you can sleep better having tested, then do it.

[cara615]

Thanks all for your very informative and caring advice. I think I will choose to believe the Labcorp results we got which were neg for every single band.

 

Right now we are on the BRAVO probiotic which i will update on my thread that I started. 2 weeks on it and his tics are almost gone. i really do think its his gut that needs to be healed.

 

As for abx, he is still on them, daily dose. My goal is to get him on a prophylactic dose and then off of them. I know it may take time so right now i am just focusing on his symptoms and to be honest this is the best he has been since October 2013.

 

I am attributing this to the BRAVO.

[PowPow]

Quickly, sss, the reason we could afford it is because we switched to someone who deals with insurance. Everything is covered now. We drive for her care. We sacrificed a huge amount before then.

Her ivig also would wear off. Monthly ivig is a huge part of her tx plan. the reason I strongly recommend going to Duke's clinic, is that if they find something to diagnose a child with, they will get it covered.

we paid for IVIG out of pocket, we paid for many many very expensive is independent doctors, and they were helpful but none of them got the care that we are receiving at Duke and none of them were covered by insurance.

that is why I encourage people with severly affected kids, to at least try to get a consuly there. You never know what they may find.

[sf_mom]

I also agree with Hopeny. Go with the treatment that works, if doesn't work keep looking for underlying cause. "It" was so much more than I ever imagined but still very treatable and in "many" ways.

 

SSS: I do know someone locally that is Lyme knowledgeable, will treat with monthly IVIG, fights insurance for coverage and has it set up for in-home monthly services.

 

Our experience is IVIG is/was extremely helpful to our DD. She has had a growth spurt, lost teeth, more consistent in her mood, less aggressive, happier, etc. However, we still needed to treat the underlying infection. After her 4th monthly IVIG her immune system was actually able to fight infection better and it looked like she was regressing. We rotated antibiotics to treat Bartonella more aggressively and she made a complete turn around within 24 hours. For us, the rotation of combination antibiotics along IVIG has been the treatment protocol that is working for her. She is on Biaxin, Cedax (similar to Omnicef), Alinia.

[SSS]

Thanks Pow Pow for the information- good to know!

 

Cara, Bravo is very intriguing! So glad for your improvement! Of course it's so expensive, right?

 

SF Mom, Thank you, I am PM'ing you----

[ktdommer]

I offer a different view of testing. I once had a normal son. Things started to slowly change in his body. No big deal at first. Then I believe puberty changed all that. Everything came out that was maybe dormant or festering.

If I had known then, what I know now, I would have tested through Igenex and paid the $200 for basic western blot. Not tons of money. Then, when things happened for the worst we would have known how to jump on it and not lost so much precious time with the unknown. We could have had a Lyme doc lined up and treated herbally which wasn't a choice when he crashed and became bed bound.

We treated my healthier son who had very few symptoms. Didn't think they were symptoms at first like TMj we thought were from braces and hip pain from sports. He is a senior in college and now off of treatment. He is symtomatic free and doing very well. Did we make the right decision?

It is my youngest son who is 19 and a total mess.

Your son is a bit different, but I believe I still would have wanted to know either way. The disease can change so quickly.

I am not a Facebook person. I do know what you are talking about however.

My opinion comes from a lot of heartache that I wonder if could have some how been avoided.