Topic: Son has new tick bite, looks like mosquito bite right now
Tracy9
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GRRRR...my 20 year old, who is extremely non compliant with treatment, just got rebitten. He showed me today, and there is a bite mark the size and shape of a mosquito bite.
He said when he scratched it a dead tick came off in his fingernail. He saved the tick.
Oddly, there is a similar bite a few inches above it. Could the tick have bitten him twice?
I just finally gave up and stopped trying to get him to take his meds. He has congenital Lyme and confirmed contracted Lyme 7 years ago which was treated for just 3 weeks. He also have Babs and Bart.
He has had IV Rocephin, orals for a year or so, but is very noncompliant. His health status right now is pretty good. He was the sickest when he was NOT treating. Since he has been in treatment he's been pretty healthy. I finally gave up and decided we were doing more harm than good by him taking his meds two or three times a week.
So now what???? Do I fight him to take a course of meds again? He is already saying he wished he hadn't told me. I told him I think he should start on medication. He said "how do we know the tick had anything."
I think if I send it out for testing (we are really broke right now) he will comply if it tests positive. Can you send out a tick for testing that has been lying dead in your son's wallet for three days?
Obviously if the spots widens, I'll treat him. Every other tick I've pulled off my kids has never left a rash behind. The time he did have Lyme I never saw the tick but did see the bullseye rash. I think they have had bite marks before though, but if so they faded by the next day.
This tick he says he pulled off a couple days ago. And why are there two bite marks?
Thanks. Just when you think you know it all....you never do!
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
Sorry. Unfortunately, you cannot get a 20 year old boy to comply if he doesn't want to. I know that because I have a 20 year old boy.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Rumigirl
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Oh, Tracy, this is too much! Well, if you can get him to take doxy, or doxy, plus something for Babesia, for 4-6 weeks that would be great. But if he won't comply, or if he only takes it sometimes, well, that isn't going to work.
At that age, I guess he will have to learn the consequences the hard way, if he choses not to treat. But that sounds terribly painful for you. My heart goes out to you. Is there anyone else that he might listen to??
This whole eastern area is way too full of the blasted ticks. Don't know what to do about that, except to use extreme caution. Which, of course, means nothing to most 20 year old boys.
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Tracy9
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Well, I might be able to get him to comply...but I guess I'm trying to decide under what circumstances do I pull out the big guns; ya know? Do I wait for a rash? We'll probably send it out to be tested since he is so tough in this area and we can't easily get him to take the meds. Then we can make a deal with him that meds will be dependent on the test results.
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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Rumigirl
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Hmmm. I don't know how accurate the tick testing is. You could ask the lab. Igenex probably would be best (unless Dr. J recommends another lab).
And, of course, not everyone gets the rash. If he does, well, that's reason enough. Let us know what happens. What a tough situation.
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Rumigirl
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Oh, Tracy, this is too much! Well, if you can get him to take doxy, or doxy, plus something for Babesia, for 4-6 weeks that would be great. But if he won't comply, or if he only takes it sometimes, well, that isn't going to work.
At that age, I guess he will have to learn the consequences the hard way, if he choses not to treat. But that sounds terribly painful for you. My heart goes out to you. Is there anyone else that he might listen to??
This whole eastern area is way too full of the blasted ticks. Don't know what to do about that, except to use extreme caution. Which, of course, means nothing to most 20 year old boys.
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WildCondor
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Tracy...move to the city, seriously! Ugh!
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canbravelyme
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I would treat for a bite, and not wait for the rash or a test result.
The risks are too great.
-------------------- For medical advice related to Lyme disease, please see an ILADS physician. Posts: 1494 | From Getting there... | Registered: Aug 2006
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Tracy9
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In the city, a bird can drop a tick on you. With our luck, that would happen. I know living on 26 wooded acres in Connecticut isn't ideal...but all four of us are already infected with Lyme and co's, so it's pretty pointless.
Plus we are bankrupt, we can't move. We have managed to hang onto this house. We just practice precautions....and we love the beautiful woods that surround us. Ticks are a part of life for us, and really for everyone.
Instead of practicing fire drills like you need to in a high rise, we need to practice TICK CHECK drills and tick precautions!!! My 14 year old has it pretty down pat....just gotta get that older one to take it more seriously.
I'll try to get him to treat. I just, like last week, gave up on the treatment he is SUPPOSED to be on per Dr. J because he is SO non compliant and he has no insurance anyway. We already know he has Lyme, Bart, and Babs.
I have two months worth of Moxatag, I'll try and make him take that, plus the Artemisia he is supposed to be on anyway. I'm just going to have to bribe him I guess. While I'm at it I might as well try to get him to take his minocycline.
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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merrygirl
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holy moley!
when it rains it pours!
sending email
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Tracy9
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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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seekhelp
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Yeah, I second WC. How in the world do you continue to stay where you are given your bad luck with ticks? Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Tracy9
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Ticks are everywhere....and we don't have the means to move. I could never live in a concrete world....to quote my best friend, "Nature is what hurt me, but Nature is also what heals me."
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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hshbmom
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Hi Tracy,
The EM "typically begins as a macule..." that's the mosquito-like bump.
Two bites can be from the same tick. This has happened to my kids.
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Tracy9
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OK; good to know...the "two bite" thing was something I'd never heard of before.
I talked to him tonight and told him he needs to go on treatment. He grunted and nodded. That's as good as it gets!!!
I'll just have to commit myself to getting myself out of bed and hand feeding him the pills morning and night, because that's the only way it will happen. I'll find some pill containers and set them up, maybe that will help.
Night is not a problem, but I have to catch him before school....though school is almost out. My almost 21 year old lost most of the last two years of high school due to being flat out in bed with Lyme....and couldn't graduate.
He went on to a secondary school to be a diesel mechanic, relapsed the final quarter, and didn't graduate.
Now he has returned to high school, completed the remainder of this year, and goes all of next year. He refused to settle for a GED.
He is a state certified Firefighter and EMT and wants to go on to become a Paramedic then nurse. He didn't think a GED would be good enough for that.
You'd think he'd get that he needs the meds; but he has this EXTREMELY defiant attitude about Lyme Disease. I'm sure it is all wrapped up in his denial about us all being sick.
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
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I think Ryan is the only person who has ever gotten their college student loans deferred because they are a full time high school student. Sallie Mae is still scratching her head.
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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Rumigirl
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Tracy, I second WC about moving. But, if you can't think about it, due to finances, among other things, sounds like you need to get someone to tick-proof your yard as much as possible. Using tick tubes, etc. How about your son? Pay him?
And no going in the darned woods, beautiful as they may be. Unless you have on the tick-proof clothes that WC linked to (I reposted them the other day). (When I say you, I mean all of you--in as much as you can control a 20 year old!).
And, yes, a bird in a city can drop a tick on you, but it's not NEARLY as likely as in the middle of the woods in CT!! It's beautiful, I'm sure, but the cost in suffering . . . These are tough choices we need to make (all of us).
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Tracy9
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YES, tick proofing our yard has worked wonderfully in the past. We have sprayed and the one summer we did it repeatedly, we did not see one tick. The last two summers, my husband was just too sick to pull himself together to do it....but this year he is better and is going to do so.
We are also keeping our cats inside now, and no longer have any dogs. But as a rule, if anyone's been outside they strip and leave their clothes on the porch until they go into the laundry and get right into the shower.
My son has agreed to treat. I would resort to bribery if need be.
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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randibear
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tracy, i'd put those puppies in peanut butter or anything to get him to choke them down...
that age is a real bear.
i remember trying to talk to one teenager about lyme. he said "well i'll die young and have a good looking corpse."
could have hit him but it would have just hurt my hand.
i feel for ya girl.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Tracy9
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SCORE!!!!
After him grunting, shaking his yes, basically seeming to agree to my nonchalant suggestions of treatment over the past 3 (?) days, today when he got home from school, I got out the meds and he took them!!! NO PROBLEM!!! I'M SO HAPPY!!!
I started by taking out a bottle of Mepron (which he was never on) and a teaspoon to which he laughed and shook his head no. Then I got his standard meds out, Zith, Mino, and Artemesia, and he took them.
So I set them up for the week....and put a note out for him to take them each morning when he gets up (right on counter) and am keeping the night pill box in my room. I think we will see success here.
There are lots of layers to this onion....Mom is doing better for the first time really in 3 years, now on Bart treatment, and when he came home from school I was up, dressed, and in the living room. I was "normal Mom."
Dad got him some supper, and then I got him a bowl of ice cream. He was probably feeling kind of secure at the moment and not like he has to run and hide from the sight of me. That alone may have been enough for him to take his pills.
On another kid note, my 14 came home from school and said, "Mom, I figured something out today. You can get cured from Lyme Disease. Eventually it goes away on its own. Human beings just don't live long enough for it to happen."
That makes me sad on so many levels....that he is thinking about Lyme Disease during school at all sucks, that he has to somehow find a way to convince himself that there is a way to beat it and comes up with that answer....hey, it's better than succumbing to the alternative, I guess.
But I know and trust he will see that we can beat it, the four of us, and that eventually we will all feel better. Poor kid.
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
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And what is with my newfound tendency to just SKIP words??? I hate that!!!!
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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sammy
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Tracy, forgive me, this is not related to the topic of your post but I have to ask. Why does your son want to keep working on high school credits when he's already certified as an EMT and firefighter?
GED would allow him to move on with life now, go to college, be with people his own age. Being stuck in high school has got to be discouraging. It's like he's punishing himself. It really breaks my heart.
If he wants to become a nurse, he should take classes that will actually count towards his college degree. Each class is one step closer to his goal. That's going to make him feel better.
Keep encouraging him Tracy. He may not act like he is listening but know that he is. Words don't bounce off, they sink in.
*Hugs* I'm glad to hear that you are feeling so much better with your IVIG treatments.
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Tracy9
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Sammy....I know!!! We have all tried to convince him for uh...about three years now to get his GED. He is absolutely convinced he will not be able to realize his ultimate dream of becoming a flight nurse without a high school diploma.
I have to admire him, for going back to high school....he will be graduating four years after he should have. In fact, it doesn't feel discouraging to him. He attends special afternoon classes designed for kids who have trouble with the typical schedule, most of whom hold down a job during the day. There are only about 30 kids in the program. Still, they are high school age kids. He actually knows most of them though they were a couple years behind him.
I think he feels very cheated that he lost his junior and senior year to Lyme Disease. He regrets having gone on to "college" and wasted about $20,000 which we now owe in student loans on a career path he no longer chooses to follow, which is why he never bothered to go back and finish the last quarter.
His determination in going back to high school is very strong, and he has never wavered. We have held meetings at the school; and he has always been adamant he wanted a diploma. He proudly told me tonight he has a 95 in English. I think he had to prove he really isn't stupid or a failure, that he CAN get good grades and succeed.
I just live in fear of him relapsing because he pushes himself so damned hard. He has an entire plan. He has to go to high school all next year, then he graduates. Meanwhile he is interviewing for paying jobs as an EMT in addition to school, and actively volunteers in our town as both a Firefighter (just completed FireFighter II school) and an EMT.
He also routinely does "ridealongs" on Life Star for full shifts, whenever he can weasel his way in. He has worked hard to make friends with some of the Flight nurses, one of whom has agreed to "mentor" him and let him ride along whenever he likes.
I almost have to laugh as he took me to Hartford Hospital one night when I had to have my last PICC line pulled, and had bilateral blood clots, and two flight nurses walked past us and his jaw just dropped. He WORSHIPS them. They also looked like the Baywatch Babes of Life Star!
As soon as he graduates from high school, he plans to go to community college for two years to become a respitory therapist. Then two more to be a paramedic. I guess he just changed his mind from nursing to respitory therapy because he realized he doesn't want to "clean up poop." And both are required to staff a helicopter.
Then he has to have so many years of experience in multiple settings, plus multiple certifications, it's about a ten year plan.
This one more year of high school....he seems to be very comfortable and actually happy about that. Closure, maybe? Clearly, it is something he needs to do to feel good about himself. I can't convince him to walk in graduation though! He will be at a point where he should have graduated four years earlier.
I told him tonight I am very proud of him for his determination and ability to have such long term plans. His huge regret is the year and a half he wasted at the diesel school, and all the money. I told him don't worry about, that's what he thought he wanted to do. I think the money grubbing school should NOT have let him in without at least a GED.
Anyway....that's where he is at. He's only 20, he can already get a good paying job on an ambulance around $18 an hour....and is extremely well respected and well liked here in town. The head of the ambulance crew told me he is gifted and a real natural.
All of this from a kid who just a few short years ago required four people to hold him down to get a routine shot.....I told him I think this came from his fear of medical procedures, since as a child with undiagnosed congenital Lyme he went through HELL with epilepsy, multiple hospitalizations, tests, and guess what....
A helicopter ride!!! That's where it all began. On his 5th birthday he had a seizure and was a Code Blue in the ER, and subsequently airlifted to a major medical center. No doubt that is the root of his career choice. Face your fears.
Sorry to go on and on, we just had this conversation tonight....I have to say I'm very proud of him, all in all. And it was a rare occasion where he talked about losing those two years of high school, and actually said, "it wasn't my fault," and I said, "no, it wasn't, you were very sick."
He does not like to admit he was sick. Or is sick. Sometimes it makes me nervous when he willingly takes his pills because it might mean he is not feeling well and is not telling me. Plus, he pushes himself through when he is sick and hides it.
There's only been one person who has ever gotten him to open up about being sick....Dr. J. Thank God.
(And about the IVIG....I'm still fighting to get back into the Cancer Center. The Rifampin is helping me. I've been fighting for the IVIG for 3 months. It's ridiculous. I'm trying to find out what the latest hold up is. They don't want me there because I'm too high risk.)
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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sammy
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Thank you for explaining the situation better. It sounds like your son is incredibly driven. I understand that he wants to finish high school to prove to himself that he can. No short cuts. Have to respect him for that.
I'm also relieved to hear that he has such a positive outlook with very specific goals. Sounds like he not only wants to be well, he's going to beat Lyme, charge forward, and never look back.
My best friend is a transport nurse (ambulance and care flight/helicopter). She started out in the peds ICU and NICU. When they go out on call to pick up a kid, she's the one in charge. It's just one nurse, one respiratory therapist, and the driver/pilot. Pretty cool.
Take care Tracy. I wish you and your family the best. Please keep us posted with your IVIG progress (when they let you start again). I'm struggling with neuropathy too and hoping that HBOT and abx will resolve it. If not, I may be have to try IVIG also.
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Tracy9
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Thank you so much, Sammy. I am so proud of him...he is really driven, and he reminds me so much of myself....I can feel myself in him and see how I was. Always striving to be the best. I'm so glad he turned out this way....it could have gone much worse!
It's very befuddling how he went from a deathly fear of blood and medical stuff to, as his supervisor on the ambulance has told me, "bring it on!" The more blood and guts, the better. He didn't even like scary movies until a couple of years ago!!! I guess he likes the "rush."
I'm very disturbed about my IVIG. The Cancer Center is trying like heck not to let me back there and I can't get it anywhere else. I have jumped through every single hoop they have put in front of me. Now when I call (daily) to try and schedule it, I get this incredibly vague runaround and no one calls me back.
I can't stop projecting all kinds of things. I met with the head of the Cancer Center last week and he said it was a go. All I can imagine is that the nurses put up such a stink they somehow got him to change his mind. It is making me sick to my stomach that I don't know what is going on. I'm starting to envision myself going to the media, Dept of Public Health....this is a brand new Cancer Center that just opened and has been trying to get good press. I'm sick over 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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sammy
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If you call your prescribing doctor's office and explain the situation do you think that maybe one of their nurses might call to schedule the appt for you?
Usually health care facilities respect each other's staff and are willing to accommodate their requests. If there is a problem with your order then the nurses should work it out directly.
If you cannot get help from your prescribing doctor, don't give up. Try asking for the nurse manager at the cancer center, work you way up until you get the help that you need.
I wonder if they have a patient relations person on staff at the cancer center? Many hospitals do. This might be another helpful contact for you.
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Tracy9
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Been doing that too, and my primary care doctor's office....if they refuse me again I'm going to schedule another appt with the head of the Cancer Center. I am trying not to project, but I have met in person with all three doctors involved, (head of Cancer Center, my LLD, and my primary care doctor) and they have all given me the okay. The only thing that can go wrong is if the nursing staff / nurse manager who DO NOT want me back somehow talked the doctor out of it!!!
They falsified my records and gave me meds with no doctor's orders, I didn't really care, I just wanted to get my treatment. I think they got in some trouble and just don't want to see my face again. I wasn't trying to rat them out but it came up at my appt. Obviously my LLMD did NOT order IV steroids, DUH!!!
So I'm at the point where if they are not going to let me back I'm going to make trouble....but again, I'm projecting...but I can tell something is up. My nurse has dislikee me since Day One when I told her I couldnt' sit in a Geri Chair all day and needed a gurney (this was told in advance and prearranged over phone.) I don't get it, but it was like a ****ing contest. She refused to move me.
I offered to bring in my aerobed the next day and miraculously this "procedure room" they hardly ever use appeared with a bed in it. I have been nothing but nice and polite there....I just don't get it. Really I don't...!!!!
But I can tell something is wrong and it is stressing me out big time. Yesterday the receptionist told me, "Oh I was under the impression your primary care doctor was going to call you...." which would not be the case unless something was wrong. I called his office, and dammit, missed his callback late today while in the shower.
Today when I called, I said, "I'm just trying to schedule my IVIG. The doctor was supposed to called my neurologist for the orders and it's been over a week. Do you know what the delay is?" She said, "I don't know, I'll need to talk to the girls in the back." That was it. Rushed me off the phone, no call back.
I am trying not to freak out but I know they are going to tell me they can't do it and I am going to lose it. I can't get it ANYWHERE else because my PCP has to be on staff, and this is the only hospital where he is on staff. My LLMD is 2 hours away and I cannot travel that far two days every other week. No home care agency will do it right now because of my reactions.
I'm a wreck over this. I just want to drive there and sit there until someone tells me what is going on. I've been trying to set it up for THREE MONTHS and they have ALL given me the OK!!!
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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Unfortunately, you cannot get a 20 year old boy to comply if he doesn't want to. I know that because I have a 20 year old boy.![[group hug]](graemlins/grouphug.gif)
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