posted
Hello, I'm new. Have had symptoms for a few years now and was diagnosed with Lyme on Monday.
I've been reading about Lyme for a few weeks now, every since I suspected I had it, and I remember seeing stories about people being misdiagnosed with mono. That immediately struck a light bulb from when I was in college and got "mono" and how I was exhausted all the time for a 3 month stretch. I was sleeping 14 hours a day and still tired! Looking back I think that's when I starting getting my joint pain. That was 15 years ago! The exhaustion went away but my "arthritis" never really disappeared. Am I being paranoid? I was (and still am) an avid mountain biker and hiker so I know I was in the woods a lot back then. I've only started getting really bad joint pain in the last 2-3 years and other symptoms, like palpitations, trouble urinating, ringing in my ear, numbness in my fingers. Oddly enough I don't feel exhausted and frequently go on 3 hour mountain bike rides?
I'm so freaking confused?!? Posts: 10 | From Rockland County, NY | Registered: Jul 2011
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posted
Very valid concern. After my case of "mono" at age 17 I was never the same. I've had Lyme most of my life. I actually think I got Lymed at age 8.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
That's why I'm so frightened for my 10 yr old grandson. Four years ago he was strep positive in late May. Abx of course.
He spent the whole summer sleeping and just not himself at all. Fevers, malaise, complaining about horrible stomach pains, sore throat, etc etc.
I took him back to peditrican in the next month complaining that something wasn't right with this child. I had be child care provider since he was born, I knew this child pretty darn well.
I asked doc to do another strep. It was negative. I asked about possible mono and was told if it was mono there was no medicine to help. No s&$t Sherlock.
He also told me insurance does not pay for children to have mono test because they are so unrealiable?????? I should have said I'll pay for it do the darn test now!
If I could turn back time? He has horrible ear issues and has for years since that summer. I've had him to immediate care places like Walgreen for abx a couple times. I finally took him to doctor and no obvisious sign of ear infection, so it's off to ENT specialist. Oh boy!
Finally ADHD testing and follow thru is going to happen after 4 yrs of struggling in school. He almost didn't make it through 4th grade. I can't watch this child go thru another school year without addressing his issues.
It will be addressed and pronto! I remember I asked the pedi doc if his strep could have settled in his GI track after short stint of abx.
The doc looked at me like I had horns growing out the side of me head. I've been really concerned and I can't watch it go on.
So hopefully ENT will find something to help his ears. The ADHD evaluation goes quickly and he is given meds that help him in school and life. Prayers needed.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
@map1131 - So you suspect he didn't have strep but ADHD or do you suspect he has Lyme? I'm not really sure where you're going with your story.
Posts: 10 | From Rockland County, NY | Registered: Jul 2011
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payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
map1131, Praying for your Grandson. recovery through our Lord, as He shall provide and protect for Us. and little ones for He is Large and strong. lead His health to a new foundation, Amen
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
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posted
Pam, I share your concern about your grandson and my heart goes out to you as you look for answers. Had a similar experience with my grandson. His main problems were some headaches, suspected onset of ADD after 3rd grade, and major changes in his vision in one year.
Long story short, after 4 yrs of looking and testing, we learned he had Lyme and probably Bartonella, although Bart test was always negative. Was treated successfully by Dr J in CT.
If my Lyme brain is remembering correctly, I think I've read that children seem to have more GI problems, especially stomach pain.
Have you seen the brochure "ABCs of Lyme Disease" by the LDA? Excellent info about children!! especially the 1st page by Dr J in CT. On the left of this page, click Lyme Disease Association and go to "Resources" then LDA materials and Brochures. I also recommend their brochure "LymeRPrimer."
Do you think there's any chance that your grandson's dr would consider testing by IGeneX Lab? You could call them and order the instructions and free kit needed for sending the blood sample. Be sure the blood is drawn early in the week if your dr will test.
There's a saying in med school that I think of often with Lyme: "If you hear hoofbeats behind you, don't assume it's a horse. It could be a zebra." In my family, it has been the zebra 3 times, but only because we thought outside the box and traveled to see an LLMD.
Would it be possible for your grandson to travel for an evaluation? If not, maybe you could persuade his dr to read and follow Dr B's guidelines found at www.ilads.org
As you've noted, Winston Churchill said "Never, never, never, never give up." He was right!!!
Posts: 4638 | From South Carolina | Registered: Mar 2001
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I suspect lyme or bart based on sx. There was a deer tick or nymph tick on his neck one morning when he was brought to our home for me to child care.
This was the day after he came off abx for strep. I told his dad and grandson stay on the patio, I going to get the tweezers.
I ran in the house and came back to patio and my then 7 yr old gs had scratched the tick off and it was lost on my pebbled patio. Gone!
I argued with my ex s-i-l that it was a tick. I know an embedded tick when I see one. He told me ticks aren't that small. They lived in the country next to a family big farm.
All ex s-i-l knew were dog ticks and regular ticks. Of course I'm the crazy lyme lady that is scared to death of ticks.
There is no doubt in my mind my grandson had ticks removed from him before. The children went over to the farm & barn and played with all the animals.
On the farm in this county is wildlife galore. When the ADHD sx started I told my daughter and the ex that this grandson has lyme.
I have notes that I secretly have kept on this child since he was 7. Long list of sx all points to a TBI.
I reported my notes to his pedi 2 weeks ago. I was brushed off. I had ordered Igenex teszting kit for gs 4 yrs ago.
The kit was in my closet all that time to remind me never to take focus off the gs. There is no doubt in my mind he has a TBI.
My daughter has been asked time and time again to watch UOS. I handed her the DVD several times in the 3 yrs they lived here. She still has not watched it.
I am thinking of scheduling a movie night. Nana & Papa, daughter and 2 grandson to watch it. I will strap 32 year old to chair if I have to.
Of course I'm the crazy lyme lady. My posts about his date back 4 yrs ago. Many that have been around know I've never gotten action or answers.
I've watched these grandchildren passed back and forth between their LEGAL guardians for too long and not get medical care needed.
When my daughter was ill as a child I took off from work and took her to the doctor. When my grandsons are ill. Each parent leaves it to the other one to take care of it.
The older one they think is a chronic complainer. I know when he is serious. Children do not complain about the weird things I've heard come out of his mouth.
I've spent years silent about all things that concerned my health. I would just tell them Nana doesn't feel good. I never did specific detailing any issues.
My 7 year old asked just in the last 3 mths why I had a picture of tick and that word lyme on my vehicle magnet. He did not know I had tick illness.
He thought I was just laying on the couch because that's what I do in afternoon....not knowing that about 4-5 pm when I'm resting before I can fix a nutritional meal for them.
They moved out 2 weeks ago. I will do the right thing always. That's who I am. I'm honest and true. I do the RIGHT things. TBTG!!!!!!!!
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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map1131
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cbb, thank you. Yes I shared the ABC's of Lyme with daughter, ex s-i-l and everyone including other family members.
ABC's of Lyme is one of the most informative in print articles and it is priceless.
This is breaking my heart but I can't make my 32 yr old daughter do anything.....but my grandchildren are too young to live without a voice. I'm that voice.
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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posted
Pam, You're doing everything I suggested and more. About all I can say is I can only imagine how helpless you must feel.
I was so lucky that my daughter listened and we worked together. Will pray that your daughter will listen and work with you to get the correct diagnosis and treatment.
Might not be a bad idea to continue giving info to your grandsons when you think it is appropriate, especially about ticks and their removal.
Will keep you in my prayers. Take care!!
Posts: 4638 | From South Carolina | Registered: Mar 2001
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Oh I do. They went fishing yesterday with Papa. They got a spraying down and how to remove tick properly from me.
I told my daughter she had to do tick search last night. She said if she found one she was bringing back to me to pull them with tweezers.
She said "I'll freak!" She'll freak? What the heck does she think I do when I find another embedded tick on me? Sing and dance?
I guess I'm just more experienced. TBTG I'm trained. Maybe I can start a tick removal business and give clients all the appropiate info they need to get rid of this illness on day 1?
Well crap I don't have a medical license to rx abx. A trip to doc is too frustrating and waste of time and money for majority of people.
Well, I'm qualified to safely remove ticks!!!
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Antonio, please read as much as you can on this website. There is so much knowledge and goodwill from others.
You won't be confused for long. Once you have been educated you can't be lied to again by unknowing, unwilling, uneducated doctors again.
I'm sorry you are here looking for answers. You've come to the right place. My experiences are just what happens to us and others everyday.
If we sound like a bunch of tick illness know it alls? We are learning and we are never surprised by what people are told or experienced because, for one I've been on this site since 2002.
Feeling better is in the future. You just need to know where to start and how to start. I wish you the best.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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