Topic: Is this a nightmare? My 13 year old son now has a NEW Lyme infection...
Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
OMG, I cannot believe this...
Just last week, after waiting for six months to have our 13 year old son checked out by Dr. Jones, he clinically diagnosed our son with congential Lyme Disease. Both our children could be the poster children for congenital Lyme.
My husband is very ill with Chronic Lyme, just passed the ten year mark. He has been unable to work for a year and a half.
I have Chronic Lyme, just passed the four year mark, though clearly was initially infected as a teenager based on my complex medical history in my late teens/early twenties.
Our 19 year old son is clearly a congenital Lymie, even our pediatrician believes so. Five years ago, he was bitten and confirmed to have a new case of Lyme Disease. He has never bounced back, and is a Chronic Lymie.
So you can see why we brought our 13 year old son, who loved to brag about being the ONLY family member without Lyme Disease, to Dr. Jones to be checked. By the way, he has lived in constant fear of getting Lyme after watching the rest of his family deteriorate and become pretty nonfunctional.
Four days ago, our son woke up in the morning crying and saying his neck hurt really badly and he couldn't turn his head. We couldn't even touch it. This lasted into Sunday, but seemed slightly better Monday and today, Tuesday. Well, okay, it's Wednesday now officially...my husband and I are so upset we can't even think of sleeping.
Because he went to the school nurse yesterday and today, I made him an appt with his pediatrician. By the way, he has complained of lots of stomach issues and pains "like I've never felt before" the last couple of days.
Now of course, we know we are so paranoid about Lyme that we don't want to think every ache and pain is sure to be that. We even joked that he must have caught it just by being in Dr. Jone's office.
This evening, his pediatrician checked him out and said he probably slept funny on his neck a few nights ago.
We got home, and a little while later our son came downstairs and said, "Mom, I feel a lump on my head. I think it's a tick."
Let the nightmare begin.
On the back of his head, just in the nape of his neck, was a fully engorged tick. All around it was red, a rash that disseminated about two inches in diameter. We got out the IGENEX tick removal kit, and worked on this sucker for close to an hour.
IT WOULD NOT LET GO. Finally I spoke with two ERs, his pediatricians, and all the awesome people on Lyme Chat. The verdict was, just pull the sucker out even though clearly it would leave parts behind.
My husband had to use all his strength for several minutes to get the tick out; I mean his arms were shaking. Finally it came off, still alive and literally kicking, but left a leg and the "snorkel" behind.
My husband had to dig and cut them out of our son's head. He was screaming in pain.
We are just in shock. Would anyone really believe all four of us have Lyme Disease? I took pictures of the whole process lest anyone think we were overreacting to a flea or something.
Our pediatrician said she will put him on 200 mg of Doxy for six weeks. Of course we will call Dr. Jones tomorrow, and are sending the tick off to be tested because our son JUST five days ago had IGENEX and CLONGEN testing done, to the tune of about $600.
Now I imagine he'll have to have it all over again!!! We are hoping to get some answers by having the tick tested.
My poor little boy. His worst fear, Lyme Disease, has come true. He asked us if he was going to die. Living in this household, to him this must feel like he was just told he has leukemia.
I am in shock. Yet, sadly, a part of me has always felt like it was just a matter of time. It seemed to be a bullet he just couldn't dodge.
I am wondering:
1. Since he has congenital Lyme already, will this be really bad with the new infection?
2. Since the tick was at the nape of his neck, will it be really bad since it is so close to his brain, spinal cord, etc, and was clearly attached for several days?
Any voices of experience or words of wisdomm will be most appreciated. I just can't believe this.
Thank you again to all my wonderful friends on Lyme Chat who walked me through this tonight, complete with viewing all the nauseating pictures of the engorged tick attached to his scalp. I love you guys!!! You're the best.
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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Angelica
Unregistered
posted
Wishing your son good health and so sorry to hear you are having to deal with this and I am sure it is very scary. I hope he is fine and that you because you found the tick soon enough so hopefully all will be okay.
Try to just give it up all up to the heavens to be healed and get some sleep and try not to worry. I know it is easier said then done but do try to get some rest so you can be a strong rock for your son tomorrow.
Wishing your whole family improved health and that you son does his course of medicine and is fine. He is young and healthy so has his youth going for him.
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Oh no Tracy!
I wish I were closer to just give you a big hug.
This is the best I can do right now.
I don't think the closeness to the brain really matters.
It spreads through the blood stream.
So, it could be anywhere and traverse through the brain (blood supply).
Is doxy safe for a 13 year old?
I thought that the starting age was 17, but I may be wrong.
I think as your son already has antibodies to Lyme,
His ability to fight this new infection would be pretty darn good.
Especially with the help of antibiotics.
I would be more worried about co-infections.
We know that immediate antibiotics can rid the body of this invader.
Take a deep breath Mom.
Call Dr. J and see what course he recommends.
So sorry you are in this boat.
Sending you and your family prayers and positive thoughts.
Remember to take a picture of that rash, okay?
Just in case.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Sorry about your son I know the feeling I was on 8 years abxs then off abxs 8months and bitten in town. The strange thing this time I had a bulleye never out of hundred or so bites did i ever have a bullseye?
Treat and tell him good luck.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
200 mg of doxy? Thats it? I am so sorry to hear your story. I know too many families where everyone is infected including my own family. I am guessing the biggest worry, besides not being treated with enough ABX, is if he received a strain of lyme he didn't already have and if he picked up a new coinfection. Good luck. Look on the bright side, at least you know what to do. There are so many parents out there that wouldn't know how to help their child and may just go along with whatever ignorant advice the pediatrician gave them, liking sleeping on his neck the wrong way! I personally would find a new pediatrican. I'm interested in knowing what he said about your finding the tick after he put off your mothers intuition about it being lyme.
Posts: 547 | From Maryland | Registered: Mar 2005
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
So sorry that you and your son, and all your family have to deal with this.
Treat it aggressively and long enough and thank god that you caught this early. My best wishes for his quick recovery.
And what in the world are ticks doing out and feeding in mid-November? Shouldn't they all be hibernating by now? Do you know where he might have picked up the tick?
Ocean
Frequent Contributor (1K+ posts)
Member # 3496
posted
Tracy, What a nightmare!!! I'm so sorry! Being a parent, I can understand how scary this is, we are in the process of having our 3 children tested for congenital Lyme.
Please keep us updated on his progress, I hope the treatment is fast and effective.
Did you call already to Dr J's, I wouldn't have additional testing. If I were you I would find first how he does with treatment..... time will tell.
How often is your new chat on?
Tracy I think you eventually have to move IMO...... LOve and Hugs to you!!!!
Posts: 983 | From The sky | Registered: Feb 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I am so sorry (((tracy)))
If you are retesting than i hope u are for coinfections also....
cuz the bullseye confirms lyme in itelf.
You asked about getting reinfected... if he already has lyme (was he on meds yet?) he could get another strain but i think the real difference would be if he contracted a coinfection he didnt have..
I would just keep track of his symtpoms for dr. j. As you know it may give him some indication on how to treat...
But the good news is that his immune system seemed to keep the first infection in check all these years...
and that even though he has developed symptoms this infection ...he is diagnosed treated right away ... and as we know that is a big plus. And a bigger plus he has a llmd from the start.
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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Angelica
Unregistered
posted
I am so glad you son has meds on the way. The hairline is a favorite spot of ticks.
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
I'm so glad to hear that Dr. J's office phoned in those abx for him. Aren't you glad you had that appt. last week!. I feel better about the situation already. Hang in there.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
It's very cold out now for tick activity. Maybe it was a few days ago when it was unseasonably warm in the 60's when the tick got him?
Can you move? It unfortunately sounds like the risk of getting bitten again for the whole family is high. Even a different house in a different neighborhood but same town could be 1000 times safer. It depends--if there are small lawns, no wooded areas, near the town itself, and deer don't traipse around there, you can be safe, whereas a mile or two away, you could be at high risk.
Posts: 2276 | From united states | Registered: Jun 2004
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posted
You are in Connecticut...of course we would believe you all have Lyme!
I just read this post for the first time... would have said "Call Jones"... but you already did. (This is why I never minded when one of his staff interupted my sons' appts to ask a question. Distraught parents need answers quickly!)
Posts: 758 | From now TX | Registered: Mar 2001
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posted
Oh Tracy, I'm so sorry. At least you are getting treatment right away! You already had an appointmentand you didn't have to wait 3 months!
You are in my thoughts and prayers.
Gail
-------------------- Gail Posts: 234 | From Sterling, Ma | Registered: Jan 2008
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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
Thanks, Carla, interesting observation. I remember as a kid often finding ticks in my hairline now that you mention it. In fact I just thought that was where they went, the nape of the neck. I'd forgotten that.
Keith, Cody and Ryan both have a huge laundry list of symptoms they have had since birth. I would never think congenital Lyme otherwise. I have always said, why are my kids so screwed up? When I find the list I've typed up I'll post it. It's just that to the non Lyme Literate eye, they look like a bunch of unrelated symptoms for no apparent reason. It wasn't until I did some reading on Congenital Lyme I couldn't really deny it anymore.
Hey guys, we are all waiting for both of you over on www.lymefriends.com. C'mon, join up...it just isn't the same without you! You can double dip, really!!!!
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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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
posted
quote:Originally posted by oxygenbabe: It's very cold out now for tick activity. Maybe it was a few days ago when it was unseasonably warm in the 60's when the tick got him?
Can you move? It unfortunately sounds like the risk of getting bitten again for the whole family is high. Even a different house in a different neighborhood but same town could be 1000 times safer. It depends--if there are small lawns, no wooded areas, near the town itself, and deer don't traipse around there, you can be safe, whereas a mile or two away, you could be at high risk.
Oct and Nov are the months where I have always seen the highest tick activity here. They only rest when it is below 35 degrees. We will see them all year long, it's been cold but not too cold for ticks by any means.
Moving is not an option. We are lucky to own our house, and since being sick, we are going into bankruptcy. We would never be able to get housing again; our credit is so bad and we have no income to show, so we couldn't even get approved for an apartment....not to mention we are way too sick to even THINK about moving.
Plus I don't think it is safe anywhere. Ticks are everywhere. Maybe there are more here than other places for sure, but it only takes one.
We spray our yard like fanatics, treat our pets, and follow all the precautions if we go outside. It doesn't matter, you can get one no matter what. Birds drop them, mice drop them, another person can carry on one them into your house. Maybe a kid in the seat before him in school dropped it on the chair and it crawled on him.
You can't escape them. You can only manage it the best you can. One thing we have done that is new is allow hunters onto our land this year. We are now actively reducing our deer population, which has exploded. The first deer was killed today, the opening day of hunting season.
It wasn't easy for my husband and I, I didn't see it but he felt very badly for the deer. But having attended an excellent workshop on Lyme Disease and deer management, we totally get that the balance of nature is off now and we are taking a responsible step to head off disease spread.
Our town is 85 percent undeveloped land, mostly woods. Deer are absolutely everywhere. They don't even run when cars drive by.
I don't think anywhere is safe. I guess the only silver lining is now we all have it, so at least we are being treated??? Dr P once told us, now is the time to go out in the woods. You are on enough meds to cover Lyme and all coinfections, so go for it!
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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Tracy9
Frequent Contributor (1K+ posts)
Member # 7521
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quote:Originally posted by Lymeindunkirk: Look on the bright side, at least you know what to do. There are so many parents out there that wouldn't know how to help their child and may just go along with whatever ignorant advice the pediatrician gave them, liking sleeping on his neck the wrong way! I personally would find a new pediatrican. I'm interested in knowing what he said about your finding the tick after he put off your mothers intuition about it being lyme.
Actually our pediatrician is awesome. She is quite Lyme Literate, and has always listened to us go on and on about Lyme Disease for the past five years. She has attended seminars, read Cure Unknown, and is going to do the preceptorship with an ILADS doctor.
Frankly, we are trying to convince her to be the next Dr. Jones. She has all the right makings of someone who could follow in his footsteps.
I did not even mention Lyme Disease when I brought him in, just that his neck hurt. I mean, really, we can't honestly think that every muscle pain or strain is Lyme Disease. I actually think it is very odd that it turned out to be so! So she did not dismiss my parental intution at all, and he had just had all the Lyme and co testing done five days before at Dr Jones.
When I spoke to her on the phone, she calmly instructed us on what to do about the tick, and said she would call in six weeks of Doxy for him. I told her I had some in the house and she told me to give him some right away. What I was impressed by was that she never even mentioned doing a Lyme test, that she was very clear based on his symptoms and the tick that immediate treatment was in order.
I think that's a good start for a small town pediatrician.
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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CD57
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Member # 11749
posted
This story is so horrendous that it makes me want to up and and move to someplace like Death Valley, CA...but even then, I hear they are getting weird organisms from across the border.
I'm so sorry Tracy. I can't believe how many prisoners this F^&%$ed up illness takes.
Posts: 3528 | From US | Registered: Apr 2007
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