My daughter has been ill for the past 7, almost 8 months with a chronic headache, fatigue, eye pain/pressure at the eyebrows and behind the eyes, and all over body aches.
She seemed perfectly healthy up until then but had been complaining of being tired for perhaps a year prior to the headache starting. Since she seemed healthy in all other aspects, we just assumed that she was overly tired from having had a busy day, staying up late, etc. so never thought too much about it.
To make a long story short, after many run ins with her pediatrician basically stating that the headaches were all in her "head", she is just depressed, bipolar, blah, blah, blah, all tests are normal, we knew we weren't going to get any help for her.
We found someone wonderful willing to test her for Lyme with Igenex, which came back negative on CDC standards but positive on Igenex:
IgG: 23-25: 3+ 31: IND 34: IND 41: 2+
IgM: 23-25: IND 31: IND 34: IND 39: IND 41: 2+
Since then we have had other tests done for her:
Lyme IgM: 41: 1+
Lyme IgG: 41: 3+
Why are these coming back different now?
Bartonella H: IgG: 1:64 IgM: <1:20
B. Dun: IgG: 1:40 IgM: 1:20 FISH: Negative
C3d Immune: 23
I was told by a LLMD expert that she is borderline for all three of the above. I'm not quite sure what borderline means.
What does IgM versus IgG mean?
She has done 2 courses of Doxy 100 mg twice a day, 1st month was finished up with a 2 month break between the next round. She finished her 2nd one-month course and has now been off for 3 weeks. Her symptoms seemed to improve only slightly on the Doxy, if at all. Her main complaints of headache and fatigue were not improved at all.
Now, she is about to start Mepron/Zithromax for one month. And, again, the doc wants her to then stop and be off the meds for 3 weeks before following up. I am confused about this method because I've read two different opinions on this: One, meds should be continued for at least 2 months after symptoms are gone; the other, states that meds should only be used for one month and rotated to avoid side effects.
What are the pros and cons for long term use versus short term use? Does anyone get "cured" by one-month course then time off?
FYI: Prior to this, I've always been anti-medication, so this whole illness is very scary to me. I will do long term meds if that is what we need to get her well, but I of course would much prefer to go short term and/or solely herbals and/or rife machines--I just need to know what works and what doesn't. I just want her well. She is a child and needs to be enjoying her life, not be sick. We were always so healthy and conscious of envirotoxins, etc. This is truly ironic. And no offense, but I don't want to be part of this club-- Also, we are working with a couple of LLMDs--one who is well known, but since they follow different protocols, we are now having to choose who to follow. How does one choose?
Based on the test results above, does she have all three of these TBO? Again, her primary symptoms are chronic headache 24/7 for the past 7 months, fatigue, and eye pressure/pain especially when tired at the end of the day. She has never had a fever as far as we can tell.
Other parents, what have you done to cure your child? What has worked the best for you? How long were treatments?
Her symptoms are relatively mild in comparison to what I've read here on the boards, and I'm concerned that she didn't really respond much to the Doxy--could she not have Lyme after all?
I'm not sure now to proceed with this. Any advice or thoughts from you knowledgeable people would be greatly appreciated. I just want my daughter to get well.
Thank you so much for taking the time to read this.
a Mom With Hope
Posts: 648 | From northeast | Registered: Feb 2009
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posted
There are many explanations of the bands on this site, much better than anything I could give you. But just a quick glance... I believe 31 and 39 are very specific bands (41 not so). As I understand it, IND means that it is a very low amount but it's still positive.
The children that I know have taken abx continuously, without interruptions. I would ask your LLMD why the break is needed... medical reason?
Posts: 28 | From New Jersey | Registered: Oct 2008
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bettyg
Unregistered
posted
welcome mom, and i know you don't want to be here ... guess what, WE DON'T EITHER BUT WE'RE STUCK FOR NOW UNTIL LYME REMISSION! so we are making the best of a bad situation and giving each other SUPPORT and education.
please print off DR. C'S WESTERN BLOT EXPLANATION BY LYMETOO
read it over and over and it will explain to you the difference between igm and igg, and what the postive and ind nos. mean ok.
please break up your paragraphs more into SHORT ones on the longer, solid block text for those of us with neuro lyme and can't read or comprehend those paragraphs. we want to help you if you help us ok! big thanks. see my guidelines below ok!
HOW OLD IS YOUR DAUGHTER; you didn't say?
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Dr. Burrascano's most recent "Diagnostic Hints and 2008 Treatment Guidelines for Lyme and Other Tick Borne Illnesses" @
please go to my newbie links, copy the entire thing, and then print this off....FINANCIAL BURDENS compiled by melanie reber print off pages 74 - 92; outstanding info there. i believe there are a few more general comments there without links!! print that off too as it's newer info from members thru their own personal, tragic experiences.
Betty's POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
NOTE: you do NOT have to use "", just show the name of person you are responding to, and then type your comment.
IF you need to use "", PLEASE DELETE "BOLD" CODES so it's regular type text we read vs. the DARK, HARSH/PAINFUL BOLDING. delete the first 4 characters of 2ND LINE of a ""
[QB] just delete these 4 characters, and BOLDING is GONE! my eyes will really appreciate that; it's one very bad side effect of my having lyme for 38.5 years!! xox
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
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I'm sorry that any of us are here, but I'm also very relieved that I have somewhere to turn to
for advice and help in trying to figure out how best to get my daughter well.
My daughter is 12.
I am feeling very alone at the moment, like I'm floating out in the ocean with a lifejacket but no boats are coming for me.
I am fortunate to be working with LLMDs, but they are at odd with each other regarding treatment, so now I'm left to gamble with the way to go:
long term antibiotics or one month on, 3 weeks off; then not sure, perhaps back on. Ugh--how do I know? I just want what will cure my daughter!
I've read and read and read these boards. There is so much wonderful information here, but I also get overwhelmed with it all.
My daughter is starting Mepron and Zithromax tomorrow, and I'm so nervous of the side effects and the possible herxes.
She has to take both twice a day with food. Any advice and/or tips regarding this combo?
How soon did those of you who took this combo see/feel results? Her major complaints are chronic headache and fatigue.
It does seem that going with the long-term antibiotics is the route for her to get and stay well, but the whole idea is truly scary for me.
Of course not as scary as her getting sicker, but still it is hard to think of all the possible side effects. I just hope it works.
Especially since I don't know enough to know if other routes are perhaps safer and/or better? Anyone?
I guess I just still want to hope that she really doesn't have this and that she will just get well with the one-month rotation philosophy a la Rosner's book.
I know--sigh--not being realistic but I will try to keep having hope and faith that she will beat this quickly and completely--
it just seems overwhelming to read that some of you have had to deal with this for so long.
I am beside myself to learn over these last months that all this suffering has been going on for so long without any help from the conventional medical community.
I truly feel for all of you and wish you all complete and rapid recoveries!
I thank you in advance for all your help and support.
p.s. I hope I broke up the paragraphs the correct way?
Posts: 648 | From northeast | Registered: Feb 2009
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I thought that doxy wasn't given to children under 17..
Due to possible staining of the teeth.
I am a Mom of two young children with congenital Lyme.
Neither of them had breaks in treatment.
They were both on antibiotics for 20 months straight.
Zithromax, then amoxi (after allergic reaction to zith).
Malarone was added in for one of my children for babesia.
Co-infection testing isn't very reliable.
How much does your daughter weigh?
I ask, because I weigh about 105lbs and have done much higher doses of meds.
I also have been as low as 94lbs on much higher doses.
My headaches improved with doxy (300mg a day),
Got better with babesia treatment too.
While antibiotic therapy for illnesses wasn't our usual "comfort" zone,
My children can beat this thing.
I am going to be chronic for the rest of my life.
So...my choice for my children is/was antibiotics.
They are both currently without symptoms and off of antibiotics.
For now anyways. Hopefully for good.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Hi Hope.
I'm a Mom on this site also with two chldren treated for TBD's.
Welcome!!!
How great you found everyone here, and what an awesome Mom you are to be asking questions.
First, my kids see Dr. Jones in New Haven, Conn. He's probably the only name you can spell out on this site...I think because he gave us permission.
Anyway, I was from the Northeast too....but now I'm in Indiana.
The drive to doc J isn't too far from where you are....consider seing him. He's is a world wide, well renound Lyme Pediatrician.
He has treated my kids, and we took no breaks in meds. My daughter treated for 1.5 years. She is not on therapy now and seems okay so far.
From what I can tell, there's hope.
My son is on Zithromax, and it wouldn't surprise me if its a higher dose then your daughter...he's 6.
You need to determine what infection your treating based on tests and symptoms.
To my knowldedge, Mepron is a big one for Babesia not lyme or Bartonella...does your doctor think she has that? It doesn't look like he's tested for that, so I'm not sure why she's on that.
I'm not real good with lyme bands, but read the info bettyg suggested and maybe someone else can come on.
Igenex is a good lab.
Hang in there.
It will get better-
2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
If you aren't already there, join us over on www.lymefriends.com. There is a discussion about this very topic on there as well.
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
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posted
General: Doc told me children 8 and older can take Doxy.
It did seem to have caused some staining of her teeth though, so I'm not sure if we will be able to go back on it.
She was drinking grape juice a lot at the time, so I'm hoping that stained her teeth and not the Doxy.
My daughter weighs 80 pounds and is very petite and slender.
Wow, 20 months on meds. It sounds terrifying to me, but I am so happy to hear that it works.
It gives me strength to stay the course.
Were there any side effects or long term effects from using the meds for so long? You can email me privately, if you'd like.
How long have your children been off meds and how old are they?
2roads:
Test results were: Bartonella H--IgG 1:64 and IgM <1:20
Babesia Dun--IgG 1:40 and IgM 1:20 and FISH neg
Tracy: I will try to join lymefriends, although I'm not the most computer savvy.
Thank you all for your kind words and support. I really appreciate you helping me deal with all this!
Posts: 648 | From northeast | Registered: Feb 2009
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
Hey.
I just spoke to Dr. J about Mepron, and he stated that it can be used for Lyme in cyst form, as well as Babs.
I don't know how to interpret that Babs result....sorry.
2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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bettyg
Unregistered
posted
mom, you did a good job breaking things up; big thanks! now we can help you.
check your profile for private message from me for kids llmds!
what state are you in? only 15 nationwide!!
sounds like you are seeing an INFECTIOUS DR!! BAD NEWS!!
please read dr. burrascano's 08 lyme guidelines for KIDS!
i'll copy my welcome again that has his direct link, and PRINT IT OFF ok! best wishes. xox
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As scary as it is for me, long-term antibiotics sounds like the only way the way to go.
I'm not sure why the doc is treating first for Babs versus Bartonella.
The more I read the more her symptoms sound closer to Bart than Babs, but I'm not the expert.
I was told that her tests are all borderline for all three: Lyme, Babs, and Bart.
Interesting to hear that the Mepron will target the cyst-form Lyme and Babs.
Will the Azithromycin target the Lyme and Babs too?
What about the Bart, or do we treat one at a time?
What should be used for Bart with kids? I've heard horror stories with using Rifampin.
Will using just Doxy, rid Bart?
Bettyg: Thanks for the private email. I will print out the info now.
Thanks again everyone for your help!
Posts: 648 | From northeast | Registered: Feb 2009
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2roads
Frequent Contributor (1K+ posts)
Member # 4409
posted
The Zithromax will target lyme.
I don't think it does much for Babs but it seems its used frequently in conjunction with Mepron which is used for Babs.
The Bactrim and Zith is supposed to be for Bart since a quinolone is not recommended for the young.
I think Doxy is okay for Lyme and Bart (if age appropriate)....hopefully others will answer.
I have read that it's important to treat coinfections before or during Lyme treatment, not after.
I don't know if it's wise to treat all coinfections and Lyme at the same time in kids...Lyme, Bart and Babs. I guess it would be okay if their little bodies can handle it.
Maybe somebody that is doing all three at the same time can say.
We're just on Lyme and Bart, although I wish we were on Mepron for Babs as well.
2roads
Posts: 2214 | From West Chester, PA | Registered: Aug 2003
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