bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Was sad to learn today that my 8 year old daughter just tested positive via Igenex.
Some history. She was bitten in 2010 and 2012 and treated with abx from an LLMD for 1-2 months after each bite.
She seemed fine 2013/2014 other than having a yeasty tongue.
Spring 2015 she started complaining of feeling shakey and also that her throat hurt. My radar starts going off.
July 2015 she gets a textbook bullseye on her shoulder. No bite. She did 2 months of abx and seemed fine. All other symptoms went away.
November 2015 she started to complain of an itchy scalp.
Spring 2016 she's complained of having sore throat, itchy scalp, stomachs aches. Her ears can sometimes get hot and red. She has swollen lymph nodes in her neck.
Took her to a local LLMD and got a battery of tests all of which are in process. But Igenex cam back positive
So sad we are dealing with this. She isn't that bad compared to most. But it still sucks.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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TNT
Frequent Contributor (1K+ posts)
Member # 42349
posted
Just from what you described, I would say yeast and Bart are two big players in her illness.
What about taking her to your ART practitioner since you seem to be improving so well? I really hope you don't get on the med merry-go-round by going conventional with her.
We went through a very rough time with one of our children last fall and winter. High titers for EBV, then positive on Lyme and Babesia. We initially tried treating her for the Babesia with Zith and artemisinin, but that only made things much worse (think ER worse!). So we started Buhner herbs for Bart and Erhlichia (though her only test for Bart was negative and her Erhlichia tests were too) and there was almost immediate improvement. Added OLE for the EBV and she has been doing very well for the last few months. Recently we added artemisinin to her regimen and she is now doing so well I hate to say it.
I know what you're going through. I wish you wisdom and direction and your daughter complete healing.
Posts: 1308 | From Eastern USA | Registered: Oct 2013
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Definitely treat for yeast and see how she feels after that.
Hugs to all of you.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
My lyme test still comes back positive and it has been 10 years since I finished my lyme treatment.
My lyme doc did a new, expensive test (NOT a Western Blot) 4 years ago that was supposed to tell me if I currently have lyme as opposed to the Western Blot which is still showing past antibodies from previous illness.
Ha! The great new test also said I have lyme. That was 4 years ago and I am still quite fine and symptom free without any treatment whatsoever.
Here is the story:
I got a severe sinus infection 4 years ago and my ENT did a lyme test since he couldn't get rid of the sinus infection. That was the LabCorp or Quest Western Blot. When he gave me the positive results, I told him that I had had lyme previously, so you couldn't go by that positive result.
Still, it worried me enough to go to my old lyme doc who cured me. I guess I proved that his new test STILL was not able to perform as it was advertised to perform. My lyme doc said that when he read up on the test, he believed it could accurately differentiate old resolved lyme from new lyme infection. He even explained to me what the lab would do and how it was differentiating old infection from new.
I guess I proved that wrong. Too bad I had to pay the hundreds of dollars for the test.
All that to say that I really believe you can only go by symptoms and not Western Blot test results since your child had lyme in the past. If she has lyme symptoms again, then she could have lyme again. I don't care about the positive test at all. The tests are now useless in her case (as in mine). Her body still has lyme antibodies from the prior cases of lyme disease. That is what is giving the current positive WB result.
From Burrascano, page 7:
"DIAGNOSING LATER DISEASE
When reactive, serologies indicate exposure only and do not directly indicate whether the spirochete is now currently present."
Posts: 9931 | From Maryland | Registered: Dec 2007
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Sorry bcb1200....i have to test my 3 yr old ...omg
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
This breaks my heart to hear. So many children are affected. Good that you know to look for it and you jump to take action. She is a lucky girl in that regard.
My advise is lacking in substance, other than to say yeast and Bartonella do come to mind as a possibility.
The other words of wisdom... "Treat the patient, not the test."
Although some will say they remain positive after they are cured, I wouldn't be at all sure that is actually what is happening, especially with biofilms, cyst and L-forms, etc.
I always test positive too, but I also still have Lyme, blowing that "always test positive but don't have it" theory out of the water.
Hugs to you and your family. May the Lyme road be gentle for all.
bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Thanks all.
TF...yes I realize that once positive you can always test positive due to antibodies (although I now test negative)
I do think it is Lyme given the red hot ears. But we know yeast and Bart are likely in the mix. She has never been treated for Bart or any coinfections.
Right now we are considering starting with abx for a few months and then may change to herbs depending on how she does. I don't want to kill her gut.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I'm so sorry to hear this bcb. Can you take her to your kineseolgist? That may be a better way to treat since she has already been on abx before, plus it sounds like she's fighting yeast (abx can just make it worse).
-------------------- --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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posted
Oh, I'm sorry to hear that bcb, my daughter was recently diagnosed by Dr. K. Practitioner in Providence with borrelia and bartonella.
She was never bitten though. I think she got infected at home from me or my husband( who also has Lyme but almost asymptomatic) via food, or somehow else. She had mild symptoms on and off and I suspected that she has a tbd. I'm treating her with photons and nosodes. She response very well. She has no more symptoms , but C- dilutions of borrelia still test positive.
Think about Babesia too. For me itchy skin was symptom of Babesia
Posts: 443 | From Montreal, Canada | Registered: Oct 2009
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posted
I'm sorry to hear this. We caught my daughter's before her symptoms got as bad as mine and her treatment wasn't nearly as brutal. She even went to a local amusement park during an early herx.
You did the same. You recognized the symptoms while she is still functional and you're addressing it before she gets super sick.
Hopefully, she will have an easier time with it like my daughter did and won't have to deal with what you and I did.
I did have my daughter clean up remaining infection with the Bionic when I got back from Germany and that helped her get even better.
I didn't talk about her at all back when she was being treated since she was under 18 at the time and I didn't want any trouble .... she's 22 now ... married and pregnant with her first child. She's also a Pilates instructor like I am.
I know it's harder when it's your child, but you'll both get through this.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
Thanks Six and everyone else
It is hard when it's a child. As they say..."take me, not my child"
She is such a wonderful, smart, amazing girl. I don't want her to have to deal with this.
She's had a few dizzy spells the last few days. It's getting worse. LLMD is calling in meds in the next day or so.
Right now she doesn't appear to have any cognitive issues (knock on wood). Mainly just itchy scalp, swollen lymph nodes, sore throat, abdominal pain, red hot ears, sometimes poor stamina, and now dizzy spells. All of them come and go.
But so far she is pretty good most days. She still plays and has fun majority of the time like a kid should.
Hoping we can knock this back good and hard for food. Only thing I'm questioning is if we stay with the local LLMD who is one of the best in MA, or switch to Dr M in CT or go for the big guns, Dr C in PA
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Sorry I can't say what doc to pick. Wouldn't want to make that choice.
I can say between ILADS and other private chit chat groups, conferences, etc. these docs talk back and forth a good bit and learn from each other. So they have an advantage others don't.
Just wanted to know how your little one is doing. Just checking up on her. BTW- Children typically have an easier road than adults in fighting it, and get better faster than adults. That is encouraging.
posted
1. I tried to get my daughter in w/ Dr. C in PA. Was told one year waiting list to get scheduled.
2. Can someone tell me the symptoms of yeast? I am concerned b/c we are fairly certain that she has Bartonella, but has been on a lot of antibiotics for another issue first, and now started Doxy w/ Dr. J in Maryland.
Posts: 62 | From VA | Registered: May 2016
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Yes, it is always a 1 year wait to get in with Dr. C in Pa.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Do people find it worth it to still see her after they have started treatment earlier?
Posts: 62 | From VA | Registered: May 2016
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