Daughter positive for Lyme, now what?

[jtp]

Any thoughts/advice on my daughter's(17yo) Igenex results below:

 

I have a son with PANS(mycoplasma) and now a daughter with Lyme. She has suffered with anxiety/depression/add/cutting, school phobia and more for a few years now. She does not think PANS is a real disorder. Our PANS doc suggested we test again for Lyme since nothing we have done for her worked so far (psych meds etc., therapy).

 

Question do these results suggest that this is a new infection with LYME or is it possible this is an old infection resurfacing and we just caught it at the right time? Previous test last year was not Igenex.

 

She was given Doxy and I was told to expect a herx. She has been absolutely nasty for the past two days, is that part of the herx or just the usual teenage behavour?

 

Igenex - POSITIVE

CDC/NYS - POSITIVE

IGM-Wesern Blot

**31 Kda ++++

**39 Kda +

**41 KDA +

58 KDA ++

**83-93 KDA **

 

Igenex - Negative

CDC/NYS-Negative

IGG Western Blot

**41 KDA +

 

B.Henselae- Negative

 

Thank you.

 

 

 

[rowingmom]

Emotional lability has always been one of DD11's herxes as are her Tourette's symptoms. Herx reactions are more common when gram negative bacteria, like lyme, die off. These can become quite severe if MTHFR deletions or other methylation cycle blockages are present.

 

She has next to no symptoms now, but it has taken two full years of combo abx to get here. PANS is real. Have your daughter read the forum, she is old enough to understand. Have her read Saving Sammy or Brain on Fire. At this age it will be hard to help her if she doesn't want to be helped.

 

Bands 39and 31 are borrellia specific and will not show up unless lyme is present. Lyme doesn't disappear. Your immune system either handles it or it doesn't. You may find a point of remission, but with stress or a depressed immune system it will return (kind of like chicken pox/shingles).

Edited June 19, 2013 by rowingmom

[SSS]

If she likes to read, she could read Pamela Weintraub 'Cure Unknown'

which is a fascinating book, educational, mind expanding.

Page turner.

 

Whether she believes in PANS, and she might not even have PANS, she has Lyme disease, which nearly never travels alone, so I'd wager Bartonella is with it, based on your description, which is hard to show on a positive test.

How do I know?

Because I'm an adult who tested positive for both Lyme and Bart.

I do not have PANS.

Her life can get sooo much better, I promise, if she treats these infections.

Also, there are many supplements and things she can do to ease the herx and deal with the die off--

Sending good thoughts---

There is a way out.

[mama2alex]

You can tell her with confidence that her symptoms are commone symptoms of Lyme and she is CDC and Igenex positive for Lyme - so no question there. Maybe shifting the conversation away from "PANS" and toward a well known disease will help. I agree - have her read Cure Unknown: Inside the Lyme Epidemic by Pamela Weintraub. The author soft-pedals the psychiatric symptoms of Lyme to some extent, but she does mention them here and there. And she states unequivocally that Dr. Charles Ray Jones was seeing sudden-onset OCD in children with Lyme as far back as the 80's. This is not new or unknown.

 

If her symptoms have been around for years, she's most likely had Lyme for years. The IgM positive could indicate recent reinfection, not sure.

 

If I were you I would take her straight to a good LLMD and make sure you are treating any/all coinfections and treat until her symptoms are GONE. Most, if not all LLMDs, have seen these symptoms in the children they treat, so they will understand what they are seeing.

 

Also, if you live in MA, it's very possible your son is dealing with Lyme too. Did he test negative? The tests are, for the most part, unreliable and many with Lyme test negative. If he's not on antibiotics, you could do the Lyme culture through Avanced Labs. I believe their false negative rate is something like 4 or 6%. The study I read showed zero false positives. Mycoplasma can be carried by ticks, so that's also a red flag for him.

 

The nastiness is mostl likely a herx. Is she on an aggressive detox regimen?

[philamom]

Dr. J states that IgM converts to IgG in about two months unless there is a persisting infection driving persisting IgM reaction.

[cobbiemommy]

My son is IGM positive despite being infected for a long time. He has a persistent infection and is now on IV abx. Nastiness and irritability are definitely part of the herx response. Add in some teenage hormones and look out! We thought our son was Pandas, and maybe he was, but he definitely is a Lyme patient with all of the attending symptoms. Explain to your daughter that she has a bacterial infection that is real and has real symptoms. It is not some theory (that I believe in) called Pandas/Pans. She has Borreliosis; but the good news is it is treatable!

[jtp]

Thank you all for your thoughts,comments and support. I am going to get the book Cure Unknown, read it myself and leave it lying around the house and maybe she'll pick it up and read it too. I can not suggest it at this time because she'll just snicker at me. Last night she asked me "When am I supposed to take this probiotic?" That's a start, I guess.

 

I may be new to lyme in our family, but I have been reading this forum for years, I am not surprised that it has hit our family. I do think there is a possiblity of lyme for my DS as well, but according to our PANS doc and Integrative doc they think lyme is unlikely because he has done so well with Azith. He has been off abx for 5 weeks now (currently being treated homeopathically) but our next appt with Dr B is end of July and at that time the rest of us are getting Igenex tested. I too have been treated for Mycoplasma, but both my husband and daughter have had myco in the past but not a current infection (or so the labs have suggested that).

 

The fact that my daughter tested positive and we live in the woods, my husband deer hunts it's time we dish out the cash and test with IGENEX( I will ask about Advanced Labs). We all tested negative last year (I believe it was from Quest).

 

As far as detox I am new to that as well. The Integrative Doc only suggested activated charcoal. I can hear my daughter now, "I'm not going to eat charcoal are you crazy?" but I'll try and see what happens.

 

Does anyone have suggestions on an LLMD in Mass? I don't think I'll bother trying to get in with Dr J. there's a long wait time and my daughter will soon be 18 anyway.

 

Thanks again everyone!

Edited June 20, 2013 by jtp

[mama2alex]

Sounds like you are definitely moving in the right direction! Bentonite clay is an alternative to charcoal, but it's a yucky drink (tastes like liquid chalk), so it may not go over any better with your daughter. Charcoal can be taken as pills, so its easier. They are black though, so this will start a conversation... Maybe try telling her what they are for, rather than what they ARE. Our integrative doc, who's treating us for Lyme and mold toxicity, also says to drink plenty of water with fresh organic lemon throughout the day, exercise at least once a day, and do epsom salts baths for detox.

 

Since your son has been off abx for 5 weeks, he can do the Advanced Labs test in another 1-3 weeks. I would push for that, as the Igenex tests rely on the immune system to react, which is not a good strategy for people who's immune systems have been ravaged by Lyme. I have never tested positive to repeated Igenex tests over the last 8 years, but tested positive via Advanced Labs this Spring. And when Lyme researcher Eva Sapi tested CDC positive blood samples with Advanced Labs' culture test, there were no false positives. There was a 4-6% false negative rate, which is far, far better than the western blot. Its $600, but well worth the cost. I've spent several times that on western blots over the years.

 

Are you and your husband symptomatic?

 

I wish you the best in pursuing this. Reading Cure Unknown will help immensely in clarifying all of this for you.

[jtp]

Sounds like you are definitely moving in the right direction! Bentonite clay is an alternative to charcoal, but it's a yucky drink (tastes like liquid chalk), so it may not go over any better with your daughter. Charcoal can be taken as pills, so its easier. They are black though, so this will start a conversation... Maybe try telling her what they are for, rather than what they ARE. Our integrative doc, who's treating us for Lyme and mold toxicity, also says to drink plenty of water with fresh organic lemon throughout the day, exercise at least once a day, and do epsom salts baths for detox.

 

Since your son has been off abx for 5 weeks, he can do the Advanced Labs test in another 1-3 weeks. I would push for that, as the Igenex tests rely on the immune system to react, which is not a good strategy for people who's immune systems have been ravaged by Lyme. I have never tested positive to repeated Igenex tests over the last 8 years, but tested positive via Advanced Labs this Spring. And when Lyme researcher Eva Sapi tested CDC positive blood samples with Advanced Labs' culture test, there were no false positives. There was a 4-6% false negative rate, which is far, far better than the western blot. Its $600, but well worth the cost. I've spent several times that on western blots over the years.

 

Are you and your husband symptomatic?

 

I wish you the best in pursuing this. Reading Cure Unknown will help immensely in clarifying all of this for you.

Thanks for the info on Advanced Labs that is new to me, I will definitely check on that. As far as my husband and I being symptomatic, well maybe and possibly.

 

It's hard for me to tell since I have suffered with a mycoplasma infection which from what i can tell has similar symptoms to lyme. I also have had off and on rosacia which seems to be in combination with my mycoplasma symptoms. So checking for lyme and co infections seems to be a good idea.

 

My husband has(in our 19 years of marriage) removed many deer ticks from him and his clothing throughout the years. He has been tested annually for Lyme. But it has been the standard test at his PCP's office. A few times he was treated prophylactically. He has sore joints and just recently had a bout of night sweats. He is the one who has been exposed the most.

 

Our symptoms haven't been severe but they still should be checked.

Edited June 20, 2013 by jtp