sometimesdilly
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posted
edit/added:
I'm sure i'm not doing tihis right, but i'm editing and adding to this post to help other parents who are wondering whether their kids have Lyme and/or parents who have question about supplements too.
hopefully someone doing a search months from now can find lots of helpful info in this one place. -------------------------
Igenex results for my 5 year old son. He acquired Lyme either in my womb or from breastfeeeding, whichhe did for over 3 years. ------------ IGM: positive: 23-25, 30, 31, 34, 39, 66. IGG: positive 41
His symptoms:
-horribly painful acid reflux beginning at 2 weeks old.
- easily overstimulated; from birth til present
- always extremely sensitive to loud sudden noises
- ear infections and viruses- the frequency has not been unusual, but the severity of the illness ech time has been, including a trip to the ER with IV's for hydration.
- very sensitive emotionally
- strange fears and phobias which are increasing not decreasing
- seemed to lose a great a deal of self-confidence and just plain joy over the past year
- went from being extremely easy going and generous with friends to a kid i didn't recognize- whiny and feeling slighted every other minute- this too over the past year
- just in the past month has complained that his legs "are still asleep" for up to 5 minutes after he wakes up- always just behind the knee.
- he clearly has less stamina and energy than other kids his age, and the deficit is growing.
---- the info i'm collecting here is what supplements are best to help his body deal with heavy duty abx, and what else helps in taking care of a young one with Lyme?
thanks- dilly
[ 18. August 2007, 01:09 PM: Message edited by: sometimesdilly ]
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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I wanted to say that my daughter had a less positive test than that. Her only symptoms are a learning disability, a little bit of joint pain, and headaches.
We started her on abx a couple months ago. She does herx, but nothing compared to me ... she still plays with her friends when she's herxing, she just tires easily and gets grumpy ... some of her other symptoms flare, too.
Her treatment is only expected to take 4 months, then she'll switch to herbs.
The fact that he's not very sick might mean he'll have an easier time with it than many of us who didn't get diagnosed early. I would get him to an LLMD to really answer your questions properly.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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bettyg
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posted
Dilly,
i'm so sorry to read this! there are many moms on here with congenital lyme kids who can offer you their experiences/expertise on this subject. i can't...no 1st hand knowledge.
best wishes to your son, you, and DH.
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lymednva
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posted
Note: I wrote this in response to Dilly's original post. I am going to leave it here for anyone who is wondering if it's OK to wait to treat, or if their child really has Lyme.
-------- Lymednva
As the mother of three who were probably infected in utero, beginning 30 years before I was dx'd, I say better safe than sorry.
I would get him treatment and see how he reacts. Better to do that and find out there was nothing wrong than to have it rear it's ugly head in a few years.
My middle on was a "difficult" child from birth. He mellowed out in elementary school, and is a very compassionate young man, but by high school he was acting out, very irresponsibly, and very upset afterwards by what had happened.
He was suspended from school, and even the school bus, numerous times. His school counselor worked closely with us to try and find out the cause of it all.
We even took him to therapists who pronounced there was nothing wrong. We knew better, but felt helpless.
It wasn't until his senior year in college that he had a psychotic episode. Even then the psych duck his school sent him to in Manhattan told us he was certain it was drug-induced. He was insistent it was not.
We didn't really explore it too much. My own health was on a downhill spiral at the time, and his dad was always too busy to do much of anything, unless it benefited him.
I did note that he seemed a bit depressed at Christmas that year. I later learned that he begged his dad to let him stay out of school for a semester because of how he felt.
The following summer friends brought him home from NYC because they knew they could no longer take care of him. They realized he had big-time problems. He was in the ER within 24 hours of arriving in VA.
That was the beginning of the summer from he**. He was in the hospital twice that summer. The second time because he was on antidepressants which made him become manic and then psychotic again.
That was six years ago. He is only now getting his life back on track. He has been hospitalized twice since that summer, both times after going off his meds. Each time it becomes harder for him to return to his former self.
An artist by training, he has jumped from one low paying job to another. He is finally getting back into the job market and things are beginning to look hopeful for him again.
My son and I are extremely close and I am so proud of the progress he is making. We have heart to heart talks often and I am so glad to have those times with him.
He is even writing about his experiences now, which to me is a sign he is finally accepting it. He talks to his friends about his experiences openly.
Yes, it's heartbreaking to watch all this happen to your child, but I also know that you will still love him, perhaps even more, if that's possible, and you will come through it all.
I hope you are able to treat your son now and be able to avoid the serious problems so many here have gone through with their children.
BTW, he does have a quite noticeable Bart rash, which even his non-believing father has commented on. Bart is known to cause severe neuro problems, such as what he is experiencing.
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa."
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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sometimesdilly
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Member # 9982
posted
thanks for the support. i know he has Lyme. my initial attempts at denial after the results lasted for a few hours. adios.
of course we'll have him treated, and ASAP. i hope his ped will cooperate enough to do the right thing, but if not, we'll do what we have to do.
meanwhile, i need info about what kinds of supplements to give a 5 year old about to take heavy duty abx, and what else i can do to make sure he gets the best shot at recovering...
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Cobweb
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posted
Our LLMD prescribes both the antibiotics and the supplements for my daughter.
sometimesdilly
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Member # 9982
posted
Carol-
now that is news i can use, thanks. have any idea whether whould treat someone as young as just turned 5? i seem to recall your daughter is a teenager.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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Cobweb
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yeah- she's a teener-small in size-but still treated as an adult.
The thing she hated the most were the encapsulated horse pill vitamins because she said they stink.
Actually she was giving me such a hard time at home I arranged her med schedule so she would have to take them at school. Getting out of class for a short while was a bit of a perk-and she didn't give the school nurse near as much grief as she did me.
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hardynaka
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I treated my daughter at the age of 2 with amoxy and herbs. She got 'only' acute infection, after 3 tick bites last summer.
The amoxy doesn't cross well the b/b barrier and doesn't catch co-infections. No idea if your son would have coinfections, as I heard some like babesia also pass through placenta.
I didn't appreciate amoxy and she didn't get better with it, but went downwards, specially with intestinal symptoms...
I liked the herbal approach as it didn't mess up with her GI tract (children are difficult to keep on strict anti-candida diet). My daughter was already allergic to so many things at that time (cow milk, eggs, wheat, many fruits and veggies), that adding more constraints were too hard for us.
Herbs never caused me GI candida, so we kept on these for for her for about 4-5 months (if I remember well). Herbs can be tailored to catch co-infections too, if you know what you're fighting. We used Buhner's herbs for her, all 5 main herbs from core protocol to attack lyme, and a few others for co-infections and candida.
The difficult thing with herbs are bitter taste of some, schedule (3 times a day minimum of various things), and herbal combination.
You need to tailor it to the kid's weight.
She got over lyme and co completely, but it was 'only' acute infection. She also used micro-current against lyme and bart (KMT).
Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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Our doc(s) thinks Methylcobalamin (B-12) and folate are very important for neuro stuff. Of course, probiotics and S. Boulardii and magnesium. We also give Vit. D, fish oil and a multi.
I didn't read the other replies so "sorry" if I repeated anyone.
Posts: 554 | From Naples, Italy | Registered: Jun 2006
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sometimesdilly
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Member # 9982
posted
selma- thank you very much for the info- i keep meaning to look up Buhner's herbs for myself- now i have the motivation for 2.
sojourner- that sounds like a reasonable list. do you know what a rule of thuumb is about dosages and age/weight? My son weighs 41 lbs.
i'll definitely start with at least probiotics, right now, before any abx.
one of the things i've seen "off" in him is a fierce craving for sweets-- way way more intense than i've seen in other kids his age. it is going to be a real struggle to keep his body healthy enough to sustain an abx assault.
carol- your daughter is way older than my son- do you think your llmd would treat 1 5 year old? or at least be open to consulting with dr j about meds?
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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posted
Suplements of varios sorts helped me immensely in my fight with lyme-etcetera.. Some thart aren't too bad to deal with:
flaxseed oil-- this stuff is downright yummy
"B-50" caps- don't seem to be quite in the "horsepilll" category, but are another pill to take... But as far as I can see, taking pills is something you have to get used to when you're fighting lyme-- it's aggravating but, if you take the right pills (VERY important, of course...), your condition will improve...
gingko biloba- this definitely helped me, and you can get it in a very tasty, but not the cheapest (though nothing like any kind of pharma- pills cost) tea called 'gingko iq' , put out by 'yogi' tea company (don't worry; I'm not a 'stock-holder'...). Gingko is an herbal blood thinner.
glucosamine, condroitin and other joint support sulfates are helpful. Usually this entails some capsules..., but there's a supplement called 'nutra-joint that's a powder you stir into a drink. Some people might prefer the pills, though-- the stuff is pretty chalky-tasting... DEFINITELY worth it, though, if your lyme has progressed to the lyme-arthritis stage.
artemesia anua- This herbal anti-malarial is a serious med for babesia or malaria; if you're in an area where babesia is a common co-infection of lyme you may find it valuable. But be sure you talk to your doc about taking this. Taking this usually entails at least a couple of 500mg caps, but the extract, artimisinin, would be taken in much smaller 100 mg caps.
Garlic-- This was VERY helpful for me. I took it partly as a complement to artemesia anua against babesia-- this is a chinese herbal treatment for malaria, but I think it may have strengthem my immune system against the lyme as well. UNfortunately. its by far most effective when it"s UNcooked, and chewed to release the alicin- NOT something I would expect it wuld be easy to talk a teenager into doing...
Grapefruit seed extract (gse) and olive leaf extract- I tried this as herbal lyme treatment before I found LLMD --thus, you can see, it didn't cure me, but my LLMD had me keep taking it, and I do believe it helped. The olive leaf extract was in pills, but the gse was in drops- I think it was 25 drops in a 8-ox glas of water. 1 drop=10 mg; the dose was 250 mg of each am and pm-- be sure you drink enough liquid with it; it is seriously acidic!.
There are others, too, but my memory is failin and I have to zoom. pronto... Well, good luck with it all; I hope you feel better soon. DaveS
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Cobweb
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posted
we're going Monday morn. Will ask her about 5 year olds-hopefully I will remember. Carol
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posted
HI. Your PM box is full. My kids (3 and 5 years old ) have congenital lyme which we found out about in November. They both take theralac (1 a day for probiotic), juice plus gummies (to help their immune system and keep them healthy with proper nutrition), nordic berries from nordic naturals as a vitamin and kids DHA from nordic naturals as a source of omega 3's. They both see Dr. J in CT and he is amazing! My son herxed far too much on his zithro and mepron (took for 2 months) but my daughter did fine on it. Now my son is on amoxil and my daughter is on omnicef. If you have any questions you can pm me! I can also help you get set up if you want to do the juice plus gummies (my kids have never even had a cold since I started them on it!). -Nikki
Posts: 129 | From NYC | Registered: Sep 2006
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Vermont_Lymie
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Member # 9780
posted
So sorry dilly to hear this, following an incredibly stressful summer already. Sounds like you have gotten great advice about supplements above.
I do not have much to add to what selma, sojourner and nikki suggested about supplements, other than to say that everything tastes better in a smoothie. I have been using organic bananas, Rice Dream, yogurt, berries, along with a high protein powder (like goat whey or a vegetarian mix) in a blender sometimes this summer.
With those ingredients, you can add almost anything -- chlorella, vitamins, herbs -- and the taste is still wonderful and sweet. So if your son has some difficulty swallowing capsules, maybe a smoothie will help with delivery.
Take care and hang in there. They say children have a faster recovery in treatment. You are in good hands with Dr. J. Posts: 2557 | From home | Registered: Aug 2006
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posted
My son takes probiotics daily, 500 mg Vitamin C twice daily, 3 oz SIBU balance, a whole food drink supplment made from the seabuckthorn berry (awesome stuff!), extra magnesium, daily vitamin and we just started with something called Chlorella that the doctor recommended. He also takes rifampin daily.
Posts: 547 | From Maryland | Registered: Mar 2005
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sometimesdilly
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Member # 9982
posted
(i've edited original-1st post)
Carol- thank you very much for asking on Monday; she can have us both as a 2-fer for that matter, if she is up for it.
Vermont- sounds like you're not having an easy time of it either. thanks for the smoothie suggestion- i love them myself and have been getting Nathan accustomed to the idea...
a little later today i'll compile all the suggestions for supplements you'all have so kindly offered and post it.
i am grateful beyond measure that this board exists, and that warm & wonderful people never fail to help when most needed. thank you.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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AliG
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Dearest Dilly-
I'm so sorry that you've had your worst fear confirmed, but glad that you are now able to set about getting help for your son.
Thanks for posting this. I've seen a lot of this in my DD, but my husband doesn't see it. maybe I'll print out your post & start it all over again.
My dd doesn't want anymore blood tests. The quasi-LL peduck I went to left it for us to keep track of symptoms.
How the heck do you keep things like lack of confidence, whininess, increased fears, sensitivity to sudden loud noises and emotional sensitivy in a symptom diary?
She doesn't tell me about aches & pains anymore because hubby & I had explained them away as she was overtired. She assumes she's been laying funny when she gets pins & needles, so doesn't bring that up either.
She's becoming more & more disorganized and forgetful. I was upset with her teacher last year because she was being disorganized in school and she never really brought it up to me. Maybe her teacher this year will pick up on some issues?
Thie big thing is she still seems to do well on tests, relative to a lot of the other children and her reading skills are above average. It seems that if she's not really having trouble with the classwork, she must be fine?
Just thinking about this again makes me want to throw up!
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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sometimesdilly
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Member # 9982
posted
hi Ali-
i know just what you mean about how vague the symptoms my DS and your DD have may seem to others.
my otherwise supportive husband didn't believe our son had Lyme until he saw the Igenex results; all along he thought i was worrying about nothing when i saw something that seemed off.
In fact, no one else believed our son was anything but perfectly healthy.
just about one year ago we had our DD got to a kid's therapist for 3 or 4 sessions, mostly to help him cope with a chronically ill mom, but also to have him assessed.
The therapist thought our guy was 101% OK. Better than fine; that he was unusually emotionally perceptive, extrememely bright and completely engaging. Our ped has said the same things all along.
In retrospect, i saw and felt just flashes/ short periods of things being wrong until about a year ago, when it has become clearer and clearer to me that he has been more not ok than ok.
the behavioral changes have been most striking. At last what i said to DH was, listen, something is wrong with him whether or not he has Lyme. Let's rule Lyme in or out and then move forward. That worked, and we finally did the tests.
By the by, our DS learned how to read in that otherwise not good year- at just over 4 years old, and to count to over a thousand, etc. etc. He never stopped being bright. In our case, at least, that has obviously been an irrelevant indicator. hope reality is otherwise for your DD.
i'm sorry you still don't have your husband's support. a big BOO to that!!!!!
i will definitely share with you any helpful info i come across along the way.
big hugs to you- dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
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AliG
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Dilly,
I really need to thank you because your fight for your little guy helps keep my DD's issues closer to the top of my mess of a head. It also inspires me to want to work up the strength to try to figure out another route to gaining DH's support.
quote:In retrospect, i saw and felt just flashes/ short periods of things being wrong until about a year ago, when it has become clearer and clearer to me that he has been more not ok than ok.
the behavioral changes have been most striking. At last what i said to DH was, listen, something is wrong with him whether or not he has Lyme. Let's rule Lyme in or out and then move forward. That worked, and we finally did the tests.
DD seems to be at the flashes/short periods stage now, I guess. I don't know if I have to wait until it becomes more constant/obvious for him to see a problem.
It's so difficult to point things out to a DH who's home only about an hour or so before her bedtime during the week (mostly watching TV) and who spends large chunks of time mowing the lawn & napping on weekends.
The rest of the time he thinks he's being supportive by trying to drag me away from the computer & out of the house, when all I want to do is find answers. He thinks I'm making myself crazy with this.
Maybe I am, but how do you not? There aren't enough answers! IT'S NOT THE *@#!$&* FLU!!! MOST of the doctors don't have ANY answers. Even the few who are trying and have some answers DON'T HAVE ALL THE ANSWERS!! I NEED ANSWERS!!!
I think he's part ostrich. Maybe he has good intentions(?), but HE JUST DOESN'T GET IT!!!! Actually that's part of the problem too. With the exception of the few and far between LLMDs, MOST doctors are part ostrich when it comes to these tick-borne diseases.
I need coffee, I'm ranting and rambling again.
Thanks again for being my inspiration.
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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I was upset with her teacher last year because she was being disorganized in school and she never really brought it up to me. Maybe her teacher this year will pick up on some issues?![[shake]](graemlins/shake.gif)
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