posted
Hi. I am a high school student (with lyme disease), and am doing a project on lyme disease and how it affects people. Outside of the Lyme community, very few people understand what it s like to live with lyme disease, and I am trying to raise awareness.
If you are interested, please fill out these questions. Please feel free to omit any of them if you do not feel comfortable answering, or if they do not apply to you.
I will be using the information you supply answers to tell your story, and hopefully raise awareness. I will either be presenting the information as a power point for the school community, or on a website.
I am particularly interested in hearing from other students, but would also LOVE to hear from adults.
Interview Questions:
1. What is your name? (Please choose a name for yourself- not your real one)
2. How old are you (approximately)?
3. How long have you had Lyme Disease?
4. Do you have any co-infections? If yes, please elaborate.
5. When did you find out that you have lyme disease (and co-infections)?
6. How did you find out that you have lyme disease?
7. What has the treatment been like for you?
8. What are your worst symptoms, and how do they alter your life?
9. Do you have a job? If yes, what do you do?
10. How has Lyme disease affected your ability to work?
11. were any of your born with CONGENITAL lyme? how long before they discovered this?
12. what have you discovered about losing so many friends who do NOT understand your invisible disease?
13. have you been able to attend school or have to stay home due to fatigue, etc?
14. what complications have you had with school system and staying home due to extreme lyme conditions?
15. have any of you followed the case of Conn.'s Dr. Charles Ray Jones, 1 of 12 nationwide LLMDS, lyme literate mds, who has treated over 10,000 kids with lyme? What have your thoughts been about the outcome from Conn. State Health Dept.
16. If any of you are 18, have you followed which politicians have CO-SPONSORED the lyme disease bills in congress?
17. Is there anything else you'd like to add?
If you have any ideas for additional questions, please post/message me!!!
-------------------- Really tired of being sick. Wanting to go to college and have a life. Really happy that I have a puppy. Posts: 66 | From My room | Registered: Feb 2008
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bettyg
Unregistered
posted
draba, good beginning of questions.
you asked for further questions, etc. I'm NO teenager but am contributing my thoughts here:
* were any of your born with CONGENITAL lyme? how long before they discovered this?
* what have you discovered about losing so many friends who do NOT understand your invisible disease?
* have you been able to attend school or have to stay home due to fatigue, etc?
* what complications have you had with school system and staying home due to extreme lyme conditions?
* have any of you followed the case of Conn.'s Dr. Charles Ray Jones, 1 of 12 nationwide LLMDS, lyme literate mds, who has treated over 10,000 kids with lyme? What have your thoughts been about the outcome from Conn. State Health Dept.
* If any of you are 18, have you followed which politicians have CO-SPONSORED the lyme disease bills in congress?
these were my immediate thoughts when I read the good questions you started with!
also, draba, you do NOT have to start a new post, you can just EDIT this or any of them ok.
to edit, click PAPER/PENCIL ICON to right of your name, this opens SUBJECT LINE AND BODY TEXT. make changes.
make sure you clicked lower left side to receive ALL REPLIES, click edit send, and you're done!
thank you for educating your classmates and others; perhaps a church project as well!
-------------------- Really tired of being sick. Wanting to go to college and have a life. Really happy that I have a puppy. Posts: 66 | From My room | Registered: Feb 2008
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Here are my answers. I'm not a student (well, I'm a part-time law student, but I'm not a high school student) but I had undiagnosed Lyme when in high school.
1. What is your name? (Please choose a name for yourself- not your real one)
Aniek
2. How old are you (approximately)?
33
3. How long have you had Lyme Disease?
21 years (since I was 12)
4. Do you have any co-infections? If yes, please elaborate.
I have not tested positive for co-infections, but it is pretty clear that I have Bartonella. I have bad foot pain, which is a bartonella symptom, and I have herxed on drugs that target bartonella (Levaquin and one time on Cipro for a short term for an u nrelated infection).
5. When did you find out that you have lyme disease (and co-infections)?
5 years ago, when I was 28.
6. How did you find out that you have lyme disease?
I tested positive on a western blot test through MDL labs. But my doctor said she would have diagnosed me clinically based on my history. I had the EM rash when I was 12, and although it was not diagnosed, my mother recognized the rash in a picture in the newspaper a few months after the rash which is why we suspected Lyme. I never got diagnosed through the years though, although I did have one positive Lyme test in high school that a doctor called a "false positive."
7. What has the treatment been like for you?
I have been on a variety of oral antibiotics. At first, it increased my muscle pain. Then I started to improve. Generally, it was not too hard. However, over a year ago I started having abdominal pain and it turns out I have chronic pancreatitis and possibly something wrong with my liver. We think it is from Ketek, one of the antibiotics I took. My doctor will no longer treat me aggressively because of this, she fears I can't handle it.
8. What are your worst symptoms, and how do they alter your life?
Pain. I have severe muscle in my upper back and shoulders. Before my diagnosis, I lost the use of my hands for a number of months. I had to use voice recognition software, I couldn't cook or even hold a newspaper. I still have to pay somebody to clean my apartment because I can't, and I also take most of my laundry out to get done because it is difficult for me to do it all myself.
In high school, I had severe pain in my left knee. It made it hard to concentrate in class and I sometimes stayed home from the pain. I did theatre in high school and there was at least one time where I didn't get a part in a play because the director was worried I couldn't dance because of my knee.
9. Do you have a job? If yes, what do you do?
Yes, I work in health policy and benefits for a labor union.
10. How has Lyme disease affected your ability to work?
I have been able to work, but I have to take a lot of time off for the doctor appointments and when I don't feel well. I had to use voice recognition software for a few months, which made work difficult. There are days when I'm dizzy and don't get much done at work.
11. were any of your born with CONGENITAL lyme? how long before they discovered this?
No
12. what have you discovered about losing so many friends who do NOT understand your invisible disease?
This hasn't happened to me. My friends have all been incredibly understanding.
13. have you been able to attend school or have to stay home due to fatigue, etc?
I started law school part-time a few months after starting treatment. I'm in my last year now, I work full time as well. I have had to reschedule some exams when I haven't felt well, but I'm graduating on schedule.
14. what complications have you had with school system and staying home due to extreme lyme conditions?
I've been lucky. My school is very good about allowing people to reschedule exams if you get a doctors note. I've done this a few times.
15. have any of you followed the case of Conn.'s Dr. Charles Ray Jones, 1 of 12 nationwide LLMDS, lyme literate mds, who has treated over 10,000 kids with lyme? What have your thoughts been about the outcome from Conn. State Health Dept.
Yes. Unfortunately, medical boards decide based on the concept of a standard of care. A standard of care is often interpreted as how the doctors in the state are treating a condition. This means that it is very easy for medical boards to discipline doctors who don't approach treatment in the same way as the majority of the doctors.
The result in this case is extremely sad. I know so many parents whose children have been saved by Dr. J.
16. If any of you are 18, have you followed which politicians have CO-SPONSORED the lyme disease bills in congress?
Yes, I am actually working on trying to get more. It is hard for us because we are a grassroots group of people who are sick. It is hard to have a voice in Congress without lots of money to pay professional lobbyists.
17. Is there anything else you'd like to add?
Not at this point, but feel free to PM me if you want.
If you have any ideas for additional questions, please post/message me!!!
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Interesting project.
Here are my answers:
1. Name- LymeinLa.
2. I am 42 years young.
3. Not sure how long. Probably since July of 2003....possibly longer.
4. I have been diagnosed with Babesia, bartonella, CMV, HHV-6, and EBV. (My LLMD feels these virus' are co-infections)
5. October 14 of 2006 for Lyme....Nov. 21 for co-infections.
6. After seeing several specialists....Cardiologist, Internist, Pulmonologist, etc
I googled my symptoms and kept coming up with Lyme or Lupus.
I knew I didn't have Lupus since my ANA panel was completely negative.
I couldn't get anyone of these specialists to test for Lyme though.
We "don't have that here in La."
7. A long, expensive, taxing haul....with much more to go. However, I can honestly
Say I am better now than I was back in Oct. 2006.
8. I am a Speech Pathologist. So, the inability to find words,
9. Not currently employed. Still trying to recover from Hurricane Katrina and Lyme.
10. I cannot ethically work as a Speech Therapist when I have difficulty speaking.
11. I believe my youngest, who is 4, has congenital Lyme. My oldest (6) has Lyme too.
I am not sure if she is congenital or not.
I realized they were both complaining with symptoms, but thought they
Were emulating me. I had them tested in May of 2007,
After my husband was also diagnosed with Lyme.
12. Not friends. Family. My two sisters don't understand and don't want
To understand. They have never even looked up Lyme disease.
My other friends (neighbors) all have been diagnosed with Lyme too.
13. Not applicable.
14. Not applicable.
15. Yes. I think because so much effort was put in to discredit Dr. J, they had to
Come back with something. I mean, what would the tax payers say about such
An unwise spending of money?
16. I wrote Bobby Jendal prior to him being elected Gov. of La.
To elicit his support of the Lyme Diseases bill.
17. I truly believe that Lyme disease is everywhere.
I believe that the CDC guidelines of reporting for epidemiologic purposes
Helps to "keep the numbers down" officially.
It is my belief that if Chronic Lyme is ever officially sanctioned by the IDSA,
It will bankrupt our health care system, creating a cascade effect,
Which will throw this nation into a major depression.
Think of the lawsuits alone that would generate....
I am going to be Chronic with Lyme the rest of my life....Hopefully with
Some breaks of remission in there. I pray that my children get cured.
Since my diagnosis, I have talked to and educated hundreds of people.
I have 14/15 neighbors with Lyme.
Thanks for the opportunity to respond. If you need anything else,
Please let me know. Good luck on your project.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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tickled1
Frequent Contributor (1K+ posts)
Member # 14257
posted
Interview Questions:
1. Quabbin Reservoir Lymie
2. 32
3. 8 yrs.
4. Mycoplasma and possibly Babesia. Also have very high Epstein-Barr levels (not sure if co-infection)
5. 2 months ago
6. Went through about 10 doctors until new Primary Care Dr. diagnosed Mycoplasma and suspected Lyme. Sent me to LLMD and was clinically diagnosed.
7. Hasn't been long enough to know for sure. Did have severe Herx on Ceftin and had to decrease dose. Seems that neurological problems are a little better.
8. Extensive neurological involvement and widespread pain. Have difficulty driving. Was very independent before Lyme and now have to depend on others. Had to quit job.
9. Was a Hairdresser and then a Bank Teller. Attributed aches and pains when Hairdresser to standing all day.
10. Can no longer work because sometimes can't drive. Also fatigue, pain, panic attacks, vision problems, etc.....make it impossible. I need to rest immediately when I feel the need.
11. I was pregnant with my daughter and didn't know I had Lyme. I don't know yet if she has it. She is 2 and will be tested soon. I pray that she doesn't have it.
12. That they don't even make the effort to try and understand. It's too much trouble and they can't be bothered. I think that their attitude is similar to the ducks. That b/c tests are negative must be all in our heads. Think clinical diagnosis for them isn't good enough. Maybe will be when they also get sick.
Think they group all Lymies into category of those caught early on and are cured and don't understand the chronic cases.
13. NA
14. NA
15. NA
16. NA
17. PRAY FOR A CURE!!!
Posts: 2541 | From Northeast | Registered: Jan 2008
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posted
Thank you all very much for your answers . I hope You all get better soon
-------------------- Really tired of being sick. Wanting to go to college and have a life. Really happy that I have a puppy. Posts: 66 | From My room | Registered: Feb 2008
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posted
I AM ANSWERING THESE FOR MY DAUGHTER WHO IS TOO SICK TO DO IT HERSELF. SHE IS 20 AND HAS BEEN TERRIBLY ILL SINCE 2000. WE JUST REVENTLY FOUND OUT ABOUT LYME AND SHE HAS HER FIRST APPOINTMENT WITH AN LLMD NEXT WEEK.
Interview Questions:
1. What is your name? (Please choose a name for yourself- not your real one)
NICOLE
2. How old are you (approximately)?
20
3. How long have you had Lyme Disease?
SUSPECT SINCE 2000
4. Do you have any co-infections? If yes, please elaborate.
UNKNOWN - FIRST APPINTMENT WITH LLMD NEXT WEEK
5. When did you find out that you have lyme disease (and co-infections)?
SEE ABOVE
6. How did you find out that you have lyme disease?
INTERNET RESEARCH
7. What has the treatment been like for you?
8 YEARS OR WRONG TREATMENT FROM DOCS WITHOUT A CLUE.
8. What are your worst symptoms, and how do they alter your life?
8 YEAR MIGRAIN AND CLUSTER HEADACHES, 6 YEAR INTENSE FIBRO, NOW MS AND PARKINSONS LIKE SYMPTOMS, MILD DIMENTIA. HER LIFE IS BASICALLY OVER UNLESS SHE CAN GET TREATMENT.
9. Do you have a job? If yes, what do you do?
NICOLE HAD HER DREAM JOB, DESPITE INTENSE PAINE AND FATIGUE. BUT SHE CRASHED AND BURNED LAST FALL AND LOST IT. UNABLE TO WORK NOW.
10. How has Lyme disease affected your ability to work?
SEE ABOVE
11. were any of your born with CONGENITAL lyme? how long before they discovered this?
NO
12. what have you discovered about losing so many friends who do NOT understand your invisible disease?
HER FRIENDS HAVE ALL ABANDONED HER EXCEPT FOR ONE. SHE IS VERY ISOLATED AND SAD ABOUT THIS. IT REALLY MAKES A DIFFICULT SITUATION MUCH WORSE.
13. have you been able to attend school or have to stay home due to fatigue, etc?
NICOLE WAS ABLE TO ATTEND SCHOOL ONLY AFTER A BATTLE BETWEEN MOM AND SCHOOL. SHE WAS HUMILIATED, ACCUSED OF FAKING, HARRASSED. TRIED TO KICK HER OUT. TRIED TO GET MOM TO HOME SCHOOL HER. NICOLE DETERMINED TO STAY IN SCHOOL. MOM HAD TO THREATEN LAWSUIT VIA DISABILITY ACT TO TURN THINGS AROUND.
AFTER ABOVE SCHOOL BENT OVER BACKWARDS TO ASSIST NICOLE. SHE WENT TO SCHOOL AN AVERAGE OF 2.5 - 3 DAYS A WEEK AND GRADUATED WITH HONORS.
NICOLE NEVER HAD ANY FRIENDS IN HIGH SCHOOL. NOT ONE. SHE WAS THE SICK GIRL WHO SPENT HALF HER TIME AT HOME AND OF TIME IN SCHOOL WAS LAYING DOWN IN NURSES OFFICE HALF THAT TIME.
14. what complications have you had with school system and staying home due to extreme lyme conditions?
SEE ABOVE
15. have any of you followed the case of Conn.'s Dr. Charles Ray Jones, 1 of 12 nationwide LLMDS, lyme literate mds, who has treated over 10,000 kids with lyme? What have your thoughts been about the outcome from Conn. State Health Dept.
NO. NEW TO LYME
16. If any of you are 18, have you followed which politicians have CO-SPONSORED the lyme disease bills in congress?
SEE ABOVE
17. Is there anything else you'd like to add?
Posts: 93 | From Illinois / Ontario | Registered: Jan 2008
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I'm responding on behalf of my son, who is 5, and doesn't read yet. I thought it might be good for you to get some of what it is like for our younger chronic Lymies.
1. Name: ETP3
2. age: 5, will be 6 in May
3. We don't know how long, but can trace definate symptoms back to May 2007, with an additional possible symptom(s) going back the summer of 2006.
4. Tested negative for all co-infections, but LLMD is considering Bartonella, due to stomach pains and behavioral symptoms.
It should also be noted that ETP3 has always taken off his socks and shoes every chance he gets, even if he has to put them right back on.
(I have to wonder if he is experiencing the hot feet/foot pain associated with Bartonella).
With children this age, they cannot always elaborate on symptoms, because they cannot remember feeling any different. Pain is their norm.
5 and 6. ETP3 was diagnosed in July 2007, after running high fevers for 9 days (104-105), then developing over 20 bullseye rashes all over his body.
Even with the rashes, his pediatrician did not think that it could be Lyme, because she didn't know that you could get more than one EM rash.
But she tested anyway, and prescribed the antibiotics AFTER the results came back CDC positive.
7. Lots of medicine that doesn't taste good!!! One night of bad pain (early on from herx).
ETP3 also struggled with probiotics early on , he thought that they were making him sick so we'd have a daily battle over them.
We finally found a (very tasty) chewable one, no problem since then.
ETP3's symptoms have evolved from physical with behavioral, to primarily behavioral (indicating neuroligal involvement). Thus IV abx has been mentioned many times, but so far the mds. are holding off.
ETP3 sees two LLMD's, due to his age (there are not a lot of pediatric LLMD's out there).
8. The worst symptoms? The first to appear was also the most emotionally challanging for ETP3 and for his parents: loss of sensation of his bowel functions.
For a year and a half, ETP3 progressively had more and more potty accidents.
As parents, we didn't know what was going on, was it behavioral, was it constipation, why wouldn't he use the toilet for BM's???
Even after the Lyme dx, it still wasn't connecting, even though at that point ETP3 said he could not feel when he had to go, and his behavior was consistent with that claim.
Finally, after lots of searching for info, and then running it by the LLMD, did we connect this to Lyme.
If Lyme affects the 8th cranial nerve, which controls the GI system, then any component of the GI track can be affected.
Fortunately, this symptoom has finally started to clear, Etp3 has regained sensation most of the time, and we have set up a reward system as he relearns to use the potty.
Other symptoms include his legs being too tired to walk, headaches, leg pains, stomach aches,
temper tantrums of the 2 hour screaming variety, and random violent/homicidal thoughts, expressed towards mom or the younger sibling.
the last thing mentioned has become more explicit as he has learned about death, prior to that (back when the BM stuff started) he would say that he was going to throw me away in a dumpster.
Fortunately, his symptoms migrate, and they do not all happen on the same day.
Unfortunately, because of the age of onset, ETP3 cannot tell us what all of his symptoms are, because he does not recognize what he is feeling as being symptoms. Pain is probably normal to him.
How do these symptoms alter life?
Very strained family relationships. We love, we support, but we are burned out and then some.
9. No job, but likes to sell lemonade in the summer. (he makes a good profit, too!!)
10. Mom is very anxious about sitting out in the front yard for the lemonade business, she sprays on the bug repellant, but still has anxiety attacks.
(yes, we have lyme anxiety)How could we not?
ETP3 has never even been in a wooded area, we do not live near any woods, our yard is a big flat expanse of shortly cut grass, but our son still got Lyme.
the joy of living in a lyme endemic area.
11. To the best of our knowledge, ETP3 does not have congenital Lyme. Mom Dad and little brother all test negative, and do not have symptoms.
But: Mom and Dad were kids before Lyme was 'discovered'. So we did all the things that are an invitation for tick bites.
Mom, who grew up in a rural area in a house nestled between a corn field and the woods, and liked to play Indian and roam the woods every day. In a town where first day of deer season was an excused absence from school.
Dad, still goes camping with his frat brothers once or twice a year, which involves drinking large amounts of alcohol while playing bye bye miss American Pie on the guitar, all in lovely upstate NY.
12. ETP3 hasn't lost any friends yet, but does not like sports because he can't keep up and doesn't want to put it out there that he can't.
His best friends mother doesn't seem to want play dates at our house anymore, so when the kids get together, it is usually in a public setting or at the friend's house.
13. ETP3 goes to a small private school, because the public school is large and overwhelming, and from my brief experience when ETP3 was first diagnosed, not all that Lyme friendly.
Mom and Dad still have a bit to learn about the whole accomodation/504/IEP thing, but have not had to pursue that yet.
ETP3 is in kindergarten, full days. He is tired and often difficult when he gets home, but so far has managed.
In the beginning of the year, he was light and sound sensitive, and his school was able to work with us on these issues.
ETP3 struggles at times with getting his homework done. He does not read yet, despite taking hooked on Phonics in preschool for 2 years, and being able to sound out words last year.
In other words, he is not able to do things now that he could do at the age of 4. He is also not interested in learning new things like tying his shoes.
14. Our only school issue was with a teacher's aid who was not letting the kids go to the bathroom when ever they wanted during lunch and snack time.
They all had to go as a group, at the end of the period. Sometimes ETP3 really has to go, right away (like most people on abx!).
We talked to the teacher 2x's and the aide once, we'll see if it is resolved.
15. No for ETP3, yes for Mom.
16.same as 15.
17. Despite living in a highly lyme endemic area, no one seems to know much about this illness (unless someone in their family or social group has had it). Particularly how bad it can be.
This still floors me.
I hope all of this is helpful, and that it was ok to submit on behalf of my son.
I think that it is important for adults to learn about what young children can experience with this illness so that they can recognize it and treat it RIGHT AWAY, if it happens with their kids.
The label chronic is terrible for anyone, but particularly horrific for a young child.
Best wishes. KP
Posts: 394 | From tinton falls nj | Registered: Jul 2007
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posted
1. What is your name? (Please choose a name for yourself- not your real one) Victoria E
2. How old are you (approximately)?
3. How long have you had Lyme Disease? More than seven years
4. Do you have any co-infections? If yes, please elaborate. Not that I know of.
5. When did you find out that you have lyme disease (and co-infections)? Seven months ago.
6. How did you find out that you have lyme disease? I went to a Lyme Literate Mecical Doctor (LLMD) and I found out that my bloodtest came back positive.
7. What has the treatment been like for you? I've been on antibiotics, other medecines, and supplments and I am improving.
8. What are your worst symptoms, and how do they alter your life? I am almost always in pain, so I am not able to do what I would like to.
9. Do you have a job? If yes, what do you do? No
10. How has Lyme disease affected your ability to work? I don't have much energy and am in pain most of the time, so it takes a long time to get things done and it's hard to do homework.
11. were any of you born with CONGENITAL lyme? how long before they discovered this?
12. what have you discovered about losing so many friends who do NOT understand your invisible disease? I am better off without them.
13. have you been able to attend school or have to stay home due to fatigue, etc? I go to school, but I am not nearly as healthy as the other kids.
14. what complications have you had with school system and staying home due to extreme lyme conditions?
15. have any of you followed the case of Conn.'s Dr. Charles Ray Jones, 1 of 12 nationwide LLMDS, lyme literate mds, who has treated over 10,000 kids with lyme? What have your thoughts been about the outcome from Conn. State Health Dept. Yes, and it is horrible that he is going through this. He has saved and improved so many lives and we need more people like him.
16. If any of you are 18, have you followed which politicians have CO-SPONSORED the lyme disease bills in congress?
17. Is there anything else you'd like to add? It is important that we are all aware about Lyme Disease because we are all at risk for it.
posted
Thank you soooooooooooooooooo much to everyone who replied. I'm sorry it took me so long to write a thank you. I've been feeling awful. My project is due tomorrow and I'm quite pleased with what I have so far. I think that by the time I'm done, a few more people will understand lyme. At least that is my goal.
I hope you all start feeling better soon,
-Draba
-------------------- Really tired of being sick. Wanting to go to college and have a life. Really happy that I have a puppy. Posts: 66 | From My room | Registered: Feb 2008
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bettyg
Unregistered
posted
darn it, i was going to add MY story, and finally had some time since i'd have to go look up the rest of stuff they found wrong with me in 06!!
let us know how it went ok!
if you do this again, give us procrastinators an extra week ok!! since i was getting out newbie packages, llmd nfo, and answering pms!! lol
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