Igenex test results are back! DS is + for Lyme!

[chubbermommy]

I'm sure you can all relate to how RELIEVED I am to find out that DS is positive for Lyme. FINALLY we have SOMETHING to work on. Our ND recommended Dr. M in NY and Dr. Charles Ray Jones who I will be calling soon. We have all these natural remedies that I have to sort out. Calling my family dr to start on some stronger abx while we wait. My brain is on OVERLOAD!!!!

 

Wheeeeeeeeeeeew!!!!!

Edited June 18, 2014 by chubbermommy

[sf_mom]

Its always nice to have a better understanding of what infections your child may have but now you have to treat. Our experience is its a long road to recovery and there was no one magic treatment protocol. We found a home with integrative LLMDs that look well beyond Lyme for recovery.

 

You might ask around for other references on this forum as there are some very good 'integrative' LLMDs that might even be closer to you than the ones mentioned and could see you sooner.

[chubbermommy]

Thanks sf_mom. I need to prepare now for treatment and I've been advised that he will get worse with the herxing before he gets better.

 

Our ND is lyme literate but she cannot prescribe abx. May I ask what abx your child was/is taking?

[BeeRae22]

I can't imagine how you're feeling.... My dd started symptoms in October, and all we have to goon right now is elevated myco p. We suspect Lyme, but tests have come back negative so far.... I'm waiting for the retested results at the end of this week!

 

It's good to know which direction to head in.... This is all so difficult, and even more so when you don't know what you're dealing with!

[SSS]

Hi- I mentioned this book in another thread:

 

The Beginner's Guide to Lyme Disease

by Nicola McFadzean, N.D.

forward by Joseph J. Burrascano M.D.

 

It's wise to educate yourself about Lyme treatment -

 

But Wow, huh? Lyme diagnosis knocked my socks off right out of the ballpark with shock.

 

If it helps I'll share: my dd took an almost 2 year break from treating infections.

We started back up again almost 2 weeks ago, first with Biaxin, Nystatin, then added Ceftin a few days ago.

(*no jinx*no jinx*) but I swear, OCD is gone. She is calm. She read a book outloud to me today (no way before, couldn't get her to read at home to save my life.)

Now, there are short periods of die off. But nothing like we were living with the last year off treatment.

Detox here is work and $$

Lipo glutathione, Epsom salt baths daily (she now agrees to them!) major quality probiotics, GF/CF,

An Oxy powder capsule in the middle of the night to keep bowels moving.

I ordered Pectasol-C to try as a binder, and charcoal capsules for possible slivers of Tindamax down the road.

She is now running low grade fever die offs.

The fevers are reminding me: she has Lyme!

[sf_mom]

Like SSS, our children are on Biaxin, Cedax (similar to Ceftin) and Alinia. They have rotated protocols over the last 4 years with different antibiotics. None of them have OCD and 2 are close to symptomless however they are not done with treatment. They still have mold and heavy metals issues.

 

I too am being treated for Lyme et al and have been off and on antibiotics over the last year. Unfortunately, every time I chelate for heavy metals via IV I get a secondary infection: gum, bladder, etc and then need to go back on antibiotics. Otherwise, I am fairly close to symptomless myself and live a very full active life.

 

Its been 4 years of treatment for all of us.

[LNN]

Just so you don't freak ay how long it can take to get rid of chronic lyme...everyone's story is different. My LLMD told me his average time to get a patient well is about 1.5 yrs. It took my son longer because, like SFMom, we found additional hurdles. We had some mold that was holding him back and he had a condition called pyroluria (a zinc/B6 deficiency). Once we dealt with those, he made much better progress. So prepare yourself for a long journey - it's especially hard in the first year. But you do see progress along the way.

 

I think if you have nothing but lyme going on, Dr J is a fine choice - a number of forum members have seen him and he's extremely well respected in the lyme community. But if you have other challenges - mold, nutritional/methylation issues, etc - then an integrative LLMD might be more helpful. My understanding is that Dr J doesn't use detox aids or look at other issues. Rowingmom is in Canada and is very lyme literate. You might PM her to get some referrals and options.

[chubbermommy]

Thanks LLM. I have a LLND here who is doing the referring to Dr. J and Dr. M - I think we will try Dr. M in NY b/c she is closer. Our ND treats Lyme too so if we chose to go the all natural route, we could just stay with her.

 

Currently, DS is taking Biocidin, now he is also on something called Bab-1 and methyl assist. Plus a couple of homeopathic remedies and a probiotic. And some clay mineral bath for detox. And we already do the lemon/lime water and epsom salt bath and Mg supplement.

[nicklemama]

Now you know! We were surprised to find Lyme and co in our son. Treatment has really gotten him so much better. He's on augmentin and biaxin currently, plus supplements for methylation defects and inflammation.

[chubbermommy]

Now, after the initial elation of finding out - are the Igenex lab results accurate/trustworthy?

[SSS]

Your question takes a lot of effort to respond- so briefly:

 

It is best to have an LLMD explain this to you- and I really hope with that test, you do book an appointment for your child.

 

There are some tagged posts at the top of the forum (I believe) that go into some details about Lyme testing- you should read through-

 

and lastly: the basic ELISA test that mainstream medical will run as a test for a Lyme disease is notorious for negatives when it's actually a positive.

 

In fact, the state of Virginia passed a law that with every negative ELISA result, there is to be included a document that states: (basically)

'This test often gives false negatives.'

Other states are trying to follow suite and get legislation passed.

 

Lastly, as hard as it is to believe (although maybe not)

The person from the CDC who decreed this ELISA is to be used and followed by insurance Dr.s

in determining Lyme disease,

actually holds a patent on the ELISA.

How that's legal, I'll never know.

Sorry, welcome to the Lyme wars.

 

'Cure Unknown' by

Pamela Weintraub

 

is an excellent read.

[chubbermommy]

We did the Lyme Western blot. The IgM was positive on 4 bands. The IgG was negative.

 

From what I'm reading, IgG would be positive if the person had Lyme for a while. Since DS started his ticcing in late September, it's been 8 months, does that not qualify as 'a while'? Also read that if IgM is + and IgG is -, then it could be a false positive.

 

My LLND is convinced he has Lyme. I have to wait for the appt with the LLMD in NY, but we will go.

 

thanks, SSS.

[SSS]

Here is a great explanation on IgM versus IgG

 

http://lymemd.blogspot.com/2014/04/the-igm-question-is-it-chronic-lyme.html

 

Alright, off to play with my kids and bake :-)

[FLmom]

My ds14 just got a positive Igenex result last week after two years of this. (a questionable Western Blot 2 years ago with one positive band 41) LLMD put him on herbs, A-L Complex. He is very hesitant to put someone my son's age on the typical lyme antibiotics. I never understood his hesitation as so many people on this board and others take them and have success. We have one thing for detox, alpha lipoic acid. (Spectracell results were that ds was low on this). I am sure he needs more, but ds is very resistant to taking ANYTHING. I am even going to have to alternate a probiotic one day with the alpha lipoic acid the other day. And yesterday he refused to take the herbs for his morning dose. It's like I have to be ready with a bribe for every dose which is exhausting!

 

Anyway, he's only been consistent with the A-L Complex since Saturday, and maybe I'm imagining things, but his overall mood is much better. OCD still the same, but not depressed/angry/irritable.

[sf_mom]

If you are overly concerned about antibody results (positive/negative) there are alternative tests that can help you further confirm Lyme.

 

For example, if your child was positive or IND for Band 31 you can run the Epitode Band 31 Test that looks for the antigen of Lyme not antibodies. Its like finding the DNA. It would not require another blood draw as Igenex keeps the blood sample on file for several months but would require a lab slip from your Dr.

 

Or you could do the Dot Blot test. This particular test looks for the antigen in the urine. We collected urine days 3, 5, 7 after starting Alinia (anti-parasitic/antibiotic know to bust up Lyme cysts). The antibiotic creates die-off which is then able to pick up antigen in the urine.