I am originally diagnosed with lyme 9 years ago. Undertreated (21 days doxy).
5 yrs later, I give birth to my son. Everything is normal.
Though I have a really tough time recovering from delivery. (Later I came to realize that I was being tossed out of remission and back into active lyme).
I nurse my baby for 12 months, not knowing I still have lyme.
2 yrs later, I get raging active lyme again and I've been in and out of remission since.
Ok... my son has hit all his milestones (Physical and cognitive) along the way.
He's bright and has no apparent cognitive problems. He has always been an active little boy. He's had behavior problems, in school during the last year two years and has always been easily overstimulated.
His first grade teacher truly adores him. She knows that he's a very kind child and very bright. But he is exhibiting the following behaviors which ARE classic signs of adHd:
-hyperactivity -high distractability -easily overstimulated -angry outbursts -mood changes -over-reactions to small problems -inability to complete work --blurts things out and repeats same thing --does inappropriate things and then shows immediate remorse
**While he is still learning, he not progressing at the same rate as others with his same ability (which is high... he's one of the top in his class in math and showing great promise in reading). He's simply not able to focus long enough and cannot complete his work most of the time.
His teacher, who is an ace, by the way, says that he is going downhill fast... in the past few weeks.
We are seeing all of these things at home as well. They have become progressively worse over the past year.
The only physical symptoms he has shown over the past few years are: --leg pains, a couple of times a month --night sweats on two or three times this summer --sensitive blood sugar levels... needs to eat or he gets grumpY!
Other factors: We had him tested for lyme last year thru IGenex and the results were equivocal. So we tried a trial round of Amoxicillin with no apparent changes.
I've already spoken to my LLMD and my son will go with me next month for CD57, as she believes that lyme can cause these type of ADHD behaviors.
We also have an appointment next month with a psychologist to do testing for ADHD. We know that he will test positive.
We WILL go ahead and treat for lyme first, on the chance that we can avoid treating adhd with those drugs.
My question for you lyme mommies/daddies:
Has anyone had this same situation... I mean, given birth/breast fed when you THINK you had lyme... child shows NO definitive lyme symptoms thru the years, but then behavior just starts going downhill?
I guess I just needed to vent, as well. Thanks for listening.
Any comments are welcome. Thanks in advance.
Pea
-------------------- ~~~~~~~~~~~ I am SO not a doctor, just another lymie trying to sort out this mess, so, everyday I think... Obla di, Obla da... Posts: 552 | From Right here | Registered: Dec 2002
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char
Frequent Contributor (1K+ posts)
Member # 8315
posted
Dear Pea,
Wow. I am sorry that you are dealing with this.
My kids got infected 4yrs before diagnosis and they went down slowly, starting with ADD and the like. Then got very bad somewhat suddenly, leg pain also for son; daughter's fatigue had her in bed. Which led us thankfully to their diagnosis.
Very good you are getting him in to LLMD. Also you have head start as you understand lyme and treatment.
My kids are getting much better...I am sure that your son will turn around with treatment.
Dr. J. says that he has NEVER seen a kid who didn't graduate from lyme.
char
Frequent Contributor (1K+ posts)
Member # 8315
posted
PS
My 2cents is that you should treat the symptoms of ADHD and whatever else now, and taper off as he recovers, if you see fit.
Many people are against giving kids medicine for ADHD, depression and the like. I maintain that this sort has not had a kid suffering with ADHD, and.....
Posts: 1230 | From US | Registered: Nov 2005
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posted
Thanks for your response, Char. I have not yet come to terms with giving my 6 year old such heavy-duty, mind-altering, possibly addictive drugs. We'll see. I think the circumstances will definitely depend. In the end, we'll do what is best for my little guy.
P.S. My hubby is not on board completely with the idea that lyme can present primarily as ADHD. So anyone else who can post similar experiences would be providing a great bit of help.
Thanks again, Pea
-------------------- ~~~~~~~~~~~ I am SO not a doctor, just another lymie trying to sort out this mess, so, everyday I think... Obla di, Obla da... Posts: 552 | From Right here | Registered: Dec 2002
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shazdancer
Frequent Contributor (1K+ posts)
Member # 1436
posted
We remember a bug bite on my son when he was about 5. Since it didn't make an "expanding bull's eye," we forgot about it at the time. By second grade, it was apparent that he was having trouble concentrating enough to finish his school work. The trouble persisted despite teacher's and my efforts.
But there were no major symptoms until the fifth grade, after I divorced his father. He crashed big time. We nearly had him committed, at one point.
He is so much better after over a year of antibiotics. His emotions are stabilized, and he is succeeding at school more and more. He has a social life. He isn't sensitive to sounds or bright lights anymore. I chose not to use antidepressants, but other choices may work just as well.
Just be sure that the main course of treatment is LYME treatment, if he has Lyme!
Regards, Shaz
[edited to change an IS to an ISN'T --typo, soory!]
[ 26. November 2005, 01:50 PM: Message edited by: shazdancer ]
Posts: 1558 | From the Berkshires | Registered: Jul 2001
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posted
Sounds very similar, Shaz. I'm hoping we won't get much farther than the add symptoms.
Pea
-------------------- ~~~~~~~~~~~ I am SO not a doctor, just another lymie trying to sort out this mess, so, everyday I think... Obla di, Obla da... Posts: 552 | From Right here | Registered: Dec 2002
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posted
Dr. Jones said that 56% of kids, in his study of gestational lyme disease cases, were afflicted with hyperactivity, lack of concentration, and given the diagnosis of ADD.
This was a study of 102 cases. I believe he presented this at the conference in Reston, VA this year and there was a set of dvd's for sale. If interested, try this website:
Both lyme and syphillis gestational cases can take some time to manifest themselves in children, who do not always show signs at birth or shortly thereafter.
[ 25. November 2005, 06:37 PM: Message edited by: lou ]
Posts: 8430 | From Not available | Registered: Oct 2000
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posted
I'm so sorry you are going thru this, how awful for all of you.
I have 2 kids with congenital lyme and 'similar' situations, I will pm you.
good luck.
Posts: 799 | From home | Registered: Sep 2004
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Green pea, since you are not new to the forum, you probably know how to do searches by clicking on the search feature at the top...
I would think there has been a lot about this subject posted in the past..Perhaps you could find some of it to show to your husband..
My 18 year old has lyme, babs and bart but my 24 year old, special ed teacher is very adult ADHD..So I worry that she is also a victim..She has gone to a neuro-chiropractor and had some success..After the horrors of psych meds with the 18 year old, I will not go down the med. path again unless there is NO other option..
I would also see if Marnie has any opinion on what might work..She is very knowledgeable and so is Mo..You might post a question for them or a PM.
Good luck..lymemomtooo
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
Lyme is a possibility, but I would try diet first...
1. No Diet drinks Nada, none, ever..
2. No pancakes, syrup.. Ever
3. No cake, donuts, cupcakes, sugar and milk cereal.
4. No candy.. (very carefully controlled, never use diet candy)
5. Standard Soda pop one or two a week at most then with a meal or soon after..
Breakast should be milk, eggs, high grain wheat toast, butter, with bacon, ham, or quality sausage.
Stop using all man made vegetable cooking oils like canola, corn, and safflower. (poisons)
Kids need natural fats for their immune systems and brain functions.
Best cooking oils are olive, coconut, and Lard (natural lard). Ignore the BS about fats from the Ducks, they no nothing about diet...
Coconut oil is the best overall. Boosts the immune system and aids in brain functions..
Kids need lots of meat in their diets. Eggs are best overall. Their brains are growing and need the protein... (We all do)
Normal blood glucose levels are 100-110,, Above 150 major problem. From your description the child has a blood glucose problem simular to mine...
Diet and Metformin (500mg twice a day adult level) keeps blood glucose under control... My levels dropped from 200(critical) average to 105 average.
Morning before breakast is best time to take readings. Keep a log. Use the glucose levels to spot bad foods. Average reading should be below 120 for a month..
Talk to child's doc and see what they say about daily blood glucose testing.
Whither Lyme can cause blood sugar problems(?), my guess is that it can. Probably by causing a craving for high sugar foods for "flash" energy. Otherwise your guess is as good as mine...
My God be with you
Tj
Posts: 192 | From Phoenix, AZ | Registered: Apr 2005
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posted
I agree with TJ that diet can play a huge role here.
I would definitely avoid all artificial sweeteners, and where possible, pasteurized dairy and grains. Whole foods, real foods, raw foods when you can. Meats, veg, nuts, low sugar fruits, etc.
FWIW, my kids went to daycare with a girl who got VERY hyper if she ate anything with red food coloring in it. Thank goodness her parents went through the work of finding out her trigger or she probably would have been put on meds unnecessarily.
I would also work to get some probiotics (and omega 3's-good for the brain) into the kid - the way that Lyme messes with the body's natural flora balance can really (I mean REALLY) affect mental function. Magnesium wouldn't be a bad idea, either. My niece (with Lyme) gets twitchy mighty fast if she misses a couple of doses.
Candida can make my sister (also with Lyme) a lunatic - alternating depression with rage...keeping her yeast in check makes a huge difference for her mental state (and now with her eating not so great choices over the holiday, I can see a backslide in her - so fast!).
These kids need a firmly healthy lifestyle - they just don't seem to have the "leeway" that non-Lyme kids appear to have when it comes to diet choices. Whether it's the yeast or the Lyme itself, I don't know. I suspect that it's the overall balance being tossed out of whack...
Best of luck.
Posts: 369 | From Ohio | Registered: Mar 2002
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Actually, I've been paying attention to his diet for a year now, since he was having some pretty significant problems with behaivor and finishing work last year as well.
He eats a high protein, good carb diet with restricted intake of treats.
This even came up in conversation with his teacher this year, when we were discussing his diet, becuase that was the first thing she wanted me to take a look at when issues started to arise. Still, she even said that his lunch is "textbook healthy". Whole wheat bread, natural peanut butter, very little jelly. Cheese/turkey rolled up together, cucumbers/carrots, apples or oranges. the only sweet treat he gets is a yogurt (which is the only refined sugar in his lunch)and he doesn't have yogurt every day.
He is given healthy snacks so that he is eating every couple of hours.
He eats eggs for breakfast just about every day.
He doesn't like soda and I've never even thought of giving him ANY artificial sweeteners. He drinks mostly water and sometimes milk, with the occasional gatorade or lemonade when we eat out. He hardly ever drinks juice.
Sure he has treats, but not every day. And I could cut out all sugar. Which is my next step.
But after dealing with his diet for the past year, I'm pretty sure that it's not the only factor. Even though he will sometimes turn around on a dime after eating (as if his blood sugar was crashing), cleaning up his diet and keeping him fed every few hours have not come close to resolving the issues I mentioned in the original post.
Your point about lyme possibly causing him to need food for an energy fix is an interestsing one, Tj33.
Well, I guess only time and my next step in trial and error will tell.
I have a huge problem putting him on meds for ADHD before I know exactly what's causing it to happen. That will be our last resort, even if it means finding a more appropriate learning environment for him.
Thanks, all, for listening.
Any further comments and ideas and experiences are surely welcome. I truly appreciate the time any of you take on this.
Pea
-------------------- ~~~~~~~~~~~ I am SO not a doctor, just another lymie trying to sort out this mess, so, everyday I think... Obla di, Obla da... Posts: 552 | From Right here | Registered: Dec 2002
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I have no doubt that if I had been born 10 years later I would have been diagnosed with a.d.h.d. It was tough for my folks, but I came out ok! Many of your son's problems sound like things I went through, too. That's not to say your son doesn't have lyme, of course. My feeling is that "adhd" may be just a buzzword for a set of symptoms that varies greatly, and which often comes along with being very talented, especially in math or the arts! I would definitely try to minimize the drugs, and look unto herbal stuff. Gingko has a good chance of helping. A couple one-month rounds of Garlic and artimesia anua might be a good idea if you think that babesia might be a possibility. (I didn't look where you were from). Possibly followed up with another round of amox. Does he have a piano to play on? That could be helpful; if I hadn't had that, who knows what might have become of me! In any case, I sure understand your frustration, and best wishes to both of you! DaveS
Posts: 4567 | From ithaca, NY, usa | Registered: Nov 2000
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I agree, in fact, a friend of mine was just saying the same thing in response to my frustrated question... "Why are so many of our children being asked to go on drugs???" She said that kids have been exhibiting the same behaviors for-ever. But back then they were simply labeled as the 'bad kids'. Now, with modern medicine we sure know how to fix'em , don't we?
He does have a piano to play on, but he really loves the DRUMS!!!!
He also is a pretty awesome ice hockey player! This has been his area to shine!
Pea
-------------------- ~~~~~~~~~~~ I am SO not a doctor, just another lymie trying to sort out this mess, so, everyday I think... Obla di, Obla da... Posts: 552 | From Right here | Registered: Dec 2002
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posted
Blood glucose readings is a way to spot "bad" foods. Foods that logic says should be safe, may not be. Read the labels..
Carbs are really sugar as for as the body is concerned. Breads bakery products, that "should" be safe, contain highly process flour that hits the body as sugar.
There are a lot of "hidden" sugars out there... Most Fruit juices contain corn syrup. Even "natural" fruit juices can cause problems.
Hypoglycemia is a condition caused when the pancreas pumps too much insulin into the blood stream and blood glucose is lowered too much (under 100 dl). (Hyperglycemia (type II diabetes) is too little insulin and blood glucose level becomes too high (over 300 dl), thus you need a shot of insulin)
When my level drops below 70 I pass out. Some can go below 50. Between 80-70 my thoughts are confused and I begin to panic.It's kind of like drowning, you feel yourself slipping away.
After you experience this, you get into a habit of overeating thinking to protect yourself, which really does just the opposite.
I discovered by using blood glucose testing that pancakes with corn syrup would bring this on after four hours after eating. The "instant" cure if you can reason enough, is to eat a candy bar(I carry glucose tablets when traveling). Then eat a meat sandwich for longer lasting.
There is a new kind of syrup out called High frutose syrup. This totally messes up the pancreas. I doesn't know how to handle it, so it dumps too much insulin into the blood. And the cycle starts over. As an adult you cannot ingest alcohol. Alcohol is super sugar to the body....
Hypoglycemia Symptoms are: 1. grumpy (could panic) 2. cold sweats 3. dizzyness 4. weakness, Hard time standing up and walking 5. Illogical statements.
A cop would think that you are drunk...
(I wear a medical bracelet when traveling)
If someone passes out get them to the ER. Check the tongue for blocking the air passage. Turn them on their side to drain spit out of mouth and remove any food in the mouth so they won't choke.
Hopefully, a intervenous glucose drip will bring them around. I have a terrible,, two day headache (hangover?) after I wake up...
I haven't passed out in for a long time because I watch what I eat and take Metformin tabs. Now I know the symptoms and am prepared....
I have a feeling after reading the board that LYME can cause problems with the pancreas. Just a hunch. BUT,,,, is it LYME or is it the diet causing problems? Very hard to tell...
Blood glucose is the fuel source for the body, if it gets messed up all kind of weird things can happed..
God Bless Tj
Posts: 192 | From Phoenix, AZ | Registered: Apr 2005
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