Cyber-bullying and my daughter

[4PeasInMyPod]

My 15 year-old daughter, Cheyenne Rose, has been terribly ill for nearly 4 years with Fibromyalgia and Chronic Fatigue Syndrome following a tick bite that resulted in Rocky Mountain Spotted Fever.

What seemed to be a run-of-the-mill virus at first, only got worse with time. It would be months of testing and visits to various doctors before she got a diagnosis.

Cheyenne was missing a lot of time from school, and kids began to pass around the rumor that she was faking being sick to get out of school. Eventually, the constant pain and fatigue became too much, and she has been enrolled in an online school program for the last two years.

As time went on, the rumors became much more vicious, and extremely personal and vulgar.

She was taunted and called names on Facebook and in instant messages. My daughter began having anxiety attacks and was even reluctant to leave the house because she feared running into one of the bullies and having an attack in front of them. It would just be one more thing to tease her about.

Cheyenne had began complaining of burning in her stomach, and had begun passing blood. An endoscope last week revealed a dozen ulcers that she is now under treatment for.

A few days ago, my shy, kind, sweet, daughter took an amazing step. She wrote a song about the pain of cyber-bullying and shared it with a local newscaster. The response has been overwhelming, and over 19,000 people have heard her song.

To put herself out there, in spite of the risks and all she has been through, shows a strength that I would never have had at 15. I am so proud of my baby girl.


This is what Cheyenne wrote on the page:
"I wanted to talk about where the inspiration for this song came from. This past year, there's been a lot of challenges and obstacles for me. it's been the hardest year I've had. And in ...the middle of that, I've been told a lot of negative things. Being called names, and having people tell me how awful I am. And for a while there, I believed them. It makes you feel so bad about yourself. You don't feel worthy of anything. I've been there. But basically I just wanted to say that I hope you guys feel the same way I do about this song, and hopefully it'll be something you'll put on when you're upset and need a reminder of how wrong other people are about you. You're worth so much more than what they say. If any of you guys ever need someone to talk to, I don't care how late it is, message me please. I'd love to help however I can."

If you would like to listen to her song, here is the link: https://www.facebook.com/CheyenneRoseHawkins/videos/856194404479787/
now on YouTube: https://www.youtube.com/watch?v=hslrdk_hwe8

 

[faerywings]

I am just popping in super-quick so i don't have time to listen-- but I promise that I will. If you have seen any posts from me, my whole family has Late Stage Lyme and my kids went through hell at school. It *breaks* my heart to hear that other kids are dealing with so many of the same isses. I have to say my son is now 19 and is doing well in college. He had to quit working b/c school and a job was toomuch. But his grades are good and he is much happier than in HS.
My DD is 17 and a Senior and while she cannot wait to get out if that environment, she is technically in remission and doing better emotionally too . As a chronically ill mother and caregiver to my husband, it is my passion to educate and support those, esp the kids, who have to deal with this.

I have to get going, but like I said- I *will* listen (probably cry!) -- But would it be ok if I shared this with some of my Lyme groups?

 

[faerywings]

And yes, at one point, kids were saying that my DD must be pg since she was throwing up all of the time and in the nurses office.
If you ever need to talk to anothe rmom, my PM box is *always* open.

 

[4PeasInMyPod]

Chris, thank you so much for your kind words and support! please feel free to share Cheyenne's song. We suspected Lyme with her, but she has been through testing 3 times and it is negative. But...the symptoms seem so much like it. It was a sudden illness, fever, headache, progressed to stiff neck and body aches. No one thought to test her for RMSF for months!

 

[ritacica]

I'm so sorry! her song is beautiful!

 

[4PeasInMyPod]

Thank you, I think it is too!

 

[bcgal00]

She's a brave girl. Good for her for pushing back and getting her song out. I'd give her a hug if I could.

 

[4PeasInMyPod]

Thank you Rae, I'll tell Cheyenne that!

 

[vissarah]

The song is beautiful! She has a really good voice, and a important message! I hope she will feel better soon, beeing a teenager sucks!!

 

[faerywings]

Ok, I am back and just listened to it and I have goosebumps.
Not only does your DD have a beautiful voice, you can hear and feel the emotion in it. I hope that it is a cathartic experience for her to have written it and deserves a lot of positive feedback.

You should be very proud of yourself too, you raised a strong young lady and that is obvious to me as she puts herself totally and 100% out there. She is showing all of those a-holes that knocking her down was only temporary and she is strong and tough. Being a teen sucks, I would not want to be a teen at this point in society, but to be one with an invisible illness makes all it so much worse. She has such courage!

I could share horror stories with you about what my kids went through but my goodness, they have come out so much stronger for it, and Cheyenne seems to be doing the same. Give her a hug from me too and tell her to keep on singing her soul out!!!

PS: I am emailing the youtube link to my DD. Her friend group is mostly LGBTQ. She is one of the only straight ones, but understands what they deal with. I know that her Crew will get a lot of hearing this as well.

PPS: I don't know where Cheyenne has had her blood sent out but LabCorp/Quest pretty much are the pits. If you ever decide to have her retested, Igenix seems ot be the most accurate if you can afford it. If not, see if you can get it sent to MDL, they are often covered by insurance.


:hug:

 

[4PeasInMyPod]

Thank you, and I agree, the teenage years are the hardest.

The song is beautiful! She has a really good voice, and a important message! I hope she will feel better soon, beeing a teenager sucks!!

 

[4PeasInMyPod]

Thank you so much for your wonderful message; I just read it to Cheyenne and she was just broke out in a huge grin! Thank you for sending the link to your daughter to share with her group.

My oldest son, now in his twenties, is gay and when he was growing up we had to move him several times to different schools because of the bullying.

Thank you as well for the lab tip; all her samples have indeed been processed at LabCorp. What has recovery been like, and what are the treatment options that you have found to be the most beneficial?

Ok, I am back and just listened to it and I have goosebumps.
Not only does your DD have a beautiful voice, you can hear and feel the emotion in it. I hope that it is a cathartic experience for her to have written it and deserves a lot of positive feedback.

You should be very proud of yourself too, you raised a strong young lady and that is obvious to me as she puts herself totally and 100% out there. She is showing all of those a-holes that knocking her down was only temporary and she is strong and tough. Being a teen sucks, I would not want to be a teen at this point in society, but to be one with an invisible illness makes all it so much worse. She has such courage!

I could share horror stories with you about what my kids went through but my goodness, they have come out so much stronger for it, and Cheyenne seems to be doing the same. Give her a hug from me too and tell her to keep on singing her soul out!!!

PS: I am emailing the youtube link to my DD. Her friend group is mostly LGBTQ. She is one of the only straight ones, but understands what they deal with. I know that her Crew will get a lot of hearing this as well.

PPS: I don't know where Cheyenne has had her blood sent out but LabCorp/Quest pretty much are the pits. If you ever decide to have her retested, Igenix seems ot be the most accurate if you can afford it. If not, see if you can get it sent to MDL, they are often covered by insurance.


:hug:

 

[CindaA]

I'm sorry your daughter is dealing with this. I'm glad she was able to express herself through song. I did a lot of writing as a teen. It's a beautiful song! My son dealt with a bully when he was in public school. He ended up missing 45 days of school because of unconfirmed Celiac Disease. When he returned he felt like his friends had moved on. We've been homeschooling now for five years and he's almost 15. He's not on Facebook. I've wondered if it would help him connect more, but maybe it's best avoided...

 

[Aussiekat]

Sorry to hear about the bullying - but WTG on putting THEM to shame with the song!

 

[Aussiekat]

PS: I don't have Lyme, but I have a dear friend that tested negative a few times before she paid (out of pocket, I might add) to have IGenex run the tests ... which came back positive. Gggggrrrrr!! The time she spent waiting for false-negative results was not helpful in her recovery.

From what I understand, the testing from IGenex is like a panel - they test and look for five or six specific things ... and if they find a certain number of them, the test is considered positive.

 

[heathert]

I hope she can get her health under control--and I look forward to seeing her as a famous singer in a couple of years!

 

[faerywings]

My DD caitlyn is looking fwd to hearing the song. It must make your DD feel good about it to know that she is having an impact on others. I think that kids (humans?? LOL) just need to be "heard."

So I will try to make the Looong Lyme Saga short. Ish. heh.
DH, Gary was really sick for years and years and no one could figure out what it was and safety company to someone who could barely get out of bed. Finally figured out that it had to be Lyme but didn't test positive. Inf Disease dr (worthless!!) said it was in his head but b/c of history of tick bites that he might have Post-Lyme syndrome. 2007, I was talking to our vet re: Lyme vax for my dogs, mentioned that Gary was being tx'd for Post Lyme and she said that she had a really good Lyme Literate dr. Got into see her and he had Lyme, Babsesia, Ehrlichia, Bartonella, and Chlamydia Pneumonia. (Think that was it?) She suggested that I get tested b/c it can be sexually transmitted and sure enough I was + too. She said since I had it to get the kids tested b/c it can be congenital. Had the kids done and both of them tested + in 2008.

Their LLMD treated them both with combinations of oral abx and herbal supp's from the Cowden protocol. Plus Mepron for Babesia and antivirals for Scott who's HHV6 titers were crazy-high. They saw their dy anywhere from 6-8 weeks to 3-4 months depending on how their were doing. As they got better, he would back them off of abx little by little. Unfortunately, Cait had been in remission twice before but this seems to be the longest time symptom-free and off abx so far. The next few months will be critical to feel like she is really out of the woods. This is the first time Scott has been off abx , but has been doing really good too. But *knocking on wood* we don't go back until Feb and I am really hopeful for them.
They def. still get run down much more easily and will flare if they do too much. Guess that part will take more time.

Gary is disabled from it, and most likely will never get better. The abx hold him steady b/c when he goes off of abx, we all beg him to go back on *snorts* It is NOT pretty! I have been on IV and oral abx for almost 2 years now and am *finally* seeing some slight improvements.

This is the really stripped down version but we have tried everything from Vit C and salt protocols (don't bother) to an at home TENS like contraption ( works theoretically, but didn't see any difference) to monolauren (helping Scott) to herbal supps ( magnesium, liposomic Vit C, Cowden protocol-- all helpful) to oral and IV abx. (this combo on a pulse therapy schedule is what is working for me).

Igenix is the way to go if you suspect lyme, and to see a lyme literate dr. They will go by clinical symptoms as well as by testing. For ex. my western blot tests come back with the Lyme specific band positive but not the other requisite bands. Or I will have 3 out of the 5 but not all of the ones the CDC wants. But I have a list of symptoms that flare on schedule and react strongly to abx.

There is a website that is for financial aoid for kids who need testing. Let me see if I can find it and I will let you know.
ilads.org and http://www.lymedisease.org/ are some good websites to get info as well.

Hope that I haven't freaked you out! It can be kinda intense.
Hugs to you and you kids!

 

[AnikA68]

what a beautiful voice, I hope more comes: let us know
I wish her all the best, really heartbreaking that she has to deal with all of this in such a young age. the more I admire her courage

 

[Ellen]

what a great way of expressing what she feels.. I do hope they will make the bullies listen to it at school so they realise.

 

[ninigoesdigi]

She has such a beautiful voice! I hope things get better for her and maybe taking this step to sing to the world is just the first one to a road to better days and better friends!! Hang in there! You are not alone.

 

[4PeasInMyPod]

Mostly, except for a couple of kids, her "friends" moved on as well. Prolonged illness is so isolating to anyone, to a child, it is especially hard. On social networks, kids who are out of the school scene are continuously being reminded of everything they are missing out on, from the excitement building before school dances and football games, to the photos that follow such events. My daughter has two friends that still come to visit. How is your son today? Is his Celiac Disease under control?

I'm sorry your daughter is dealing with this. I'm glad she was able to express herself through song. I did a lot of writing as a teen. It's a beautiful song! My son dealt with a bully when he was in public school. He ended up missing 45 days of school because of unconfirmed Celiac Disease. When he returned he felt like his friends had moved on. We've been homeschooling now for five years and he's almost 15. He's not on Facebook. I've wondered if it would help him connect more, but maybe it's best avoided...

 

[4PeasInMyPod]

Thank you for the information; you are the second person on here to warn me about lab results. It makes sense that she could have contracted Lyme along with the RMSF.

PS: I don't have Lyme, but I have a dear friend that tested negative a few times before she paid (out of pocket, I might add) to have IGenex run the tests ... which came back positive. Gggggrrrrr!! The time she spent waiting for false-negative results was not helpful in her recovery.

From what I understand, the testing from IGenex is like a panel - they test and look for five or six specific things ... and if they find a certain number of them, the test is considered positive.

 

[4PeasInMyPod]

Oh my, your family has really been through the wringer with this disease! It must be incredibly hard to deal with it day-in, day-out, year after year. My heart goes out to all of you.

It makes sense to suspect Lyme as I originally did, after all, the tick that passed on RMSF to my daughter may very well have been a carrier for multiple diseases. The Infectious Disease doc Cheyenne saw was probably about as worthless as the one your family saw.

Thanks for the info; and having a way to pay for the testing would be a godsend; since my husband's work related accident, 3 years ago, we have been living week to week on his worker's comp checks which amount to a whole 41% of what he used to bring home.

It was an unseasonably warm day in December 2011, in the upper-sixties, that my daughter was walking in our woods and got bit by a tick. She was wearing a sweatshirt and didn't notice the tick until she went to shower the next evening.

Fast forward into January, when she became sick. Cheyenne was diagnosed with a virus first, then no, it's mono, oops, we were wrong again, it's RMSF, which was diagnosed during an emergency room visit!

She completed the antibiotic course for that, and we waited for her to get better...we're still waiting almost 4 years later.

I am so very sorry that you and your family are dealing with such enormous problems, and so I thank you all the more for reaching out to me with your story and offering your support - that means a great deal to me!

My DD caitlyn is looking fwd to hearing the song. It must make your DD feel good about it to know that she is having an impact on others. I think that kids (humans?? LOL) just need to be "heard."

So I will try to make the Looong Lyme Saga short. Ish. heh.
DH, Gary was really sick for years and years and no one could figure out what it was and safety company to someone who could barely get out of bed. Finally figured out that it had to be Lyme but didn't test positive. Inf Disease dr (worthless!!) said it was in his head but b/c of history of tick bites that he might have Post-Lyme syndrome. 2007, I was talking to our vet re: Lyme vax for my dogs, mentioned that Gary was being tx'd for Post Lyme and she said that she had a really good Lyme Literate dr. Got into see her and he had Lyme, Babsesia, Ehrlichia, Bartonella, and Chlamydia Pneumonia. (Think that was it?) She suggested that I get tested b/c it can be sexually transmitted and sure enough I was + too. She said since I had it to get the kids tested b/c it can be congenital. Had the kids done and both of them tested + in 2008.

Their LLMD treated them both with combinations of oral abx and herbal supp's from the Cowden protocol. Plus Mepron for Babesia and antivirals for Scott who's HHV6 titers were crazy-high. They saw their dy anywhere from 6-8 weeks to 3-4 months depending on how their were doing. As they got better, he would back them off of abx little by little. Unfortunately, Cait had been in remission twice before but this seems to be the longest time symptom-free and off abx so far. The next few months will be critical to feel like she is really out of the woods. This is the first time Scott has been off abx , but has been doing really good too. But *knocking on wood* we don't go back until Feb and I am really hopeful for them.
They def. still get run down much more easily and will flare if they do too much. Guess that part will take more time.

Gary is disabled from it, and most likely will never get better. The abx hold him steady b/c when he goes off of abx, we all beg him to go back on *snorts* It is NOT pretty! I have been on IV and oral abx for almost 2 years now and am *finally* seeing some slight improvements.

This is the really stripped down version but we have tried everything from Vit C and salt protocols (don't bother) to an at home TENS like contraption ( works theoretically, but didn't see any difference) to monolauren (helping Scott) to herbal supps ( magnesium, liposomic Vit C, Cowden protocol-- all helpful) to oral and IV abx. (this combo on a pulse therapy schedule is what is working for me).

Igenix is the way to go if you suspect lyme, and to see a lyme literate dr. They will go by clinical symptoms as well as by testing. For ex. my western blot tests come back with the Lyme specific band positive but not the other requisite bands. Or I will have 3 out of the 5 but not all of the ones the CDC wants. But I have a list of symptoms that flare on schedule and react strongly to abx.

There is a website that is for financial aoid for kids who need testing. Let me see if I can find it and I will let you know.
ilads.org and http://www.lymedisease.org/ are some good websites to get info as well.

Hope that I haven't freaked you out! It can be kinda intense.
Hugs to you and you kids!

 

[4PeasInMyPod]

Thank you for the kind words; I will certainly pass them on to Cheyenne!

what a beautiful voice, I hope more comes: let us know
I wish her all the best, really heartbreaking that she has to deal with all of this in such a young age. the more I admire her courage

 

[taxed4ever]

Such a wonderful voice and a powerful song!! Your daughter is a brave soul, so courageous and an inspiration to us all!! I send her and you lots of healing thoughts and may you find the treatment that she so deserves to put her on the path of recovery!! :hug:

 

[4PeasInMyPod]

Surprisingly, one of them stopped by the kiosk at the mall where my older daughter works, and asked her to tell Cheyenne that she had heard her song and to tell her that she thought it was beautiful.

what a great way of expressing what she feels.. I do hope they will make the bullies listen to it at school so they realise.

 

[4PeasInMyPod]

Thank you for your thoughtful and supportive words; I will certainly pass those on to Cheyenne! I believe the outpouring of support she has received has been the best medicine she could possibly have right now. Emotional pain can be as bad as physical pain, and dealing with both was just too much.

Such a wonderful voice and a powerful song!! Your daughter is a brave soul, so courageous and an inspiration to us all!! I send her and you lots of healing thoughts and may you find the treatment that she so deserves to put her on the path of recovery!! :hug:

 

[faerywings]

Of course, I can't find where the info on my computer is for the financial aid. But I somehow and very oddly remembered the name of the site.


www.lymetap.com

Where do you live? I guess that I am "lucky" in that NJ is endemic for Lyme. Some GPs will treat for Lyme prophylacticaly, if there is a tick bite. It seems insane to me that if your have a tick bite and RMSF, that they wouldn't treat for Lyme too. But like we said, ID drs, for the most part, are a huge part of the problem.

Like Cinda said, it is really hard for kids who miss school to reintegrate. Scott (son) had to be on home instruction for three months when he was in 8th grade. Time stoof still for him, while he was home. Everyone else had moved on, 3 months is a long time in 8th grade.
It was so hard to see him struggle, but he got through it. Took time, but moving on to HS helped.

I guess I can't say it enough, but it is worth the money to get Igenix testing. IIRC you can request a kit at their website and bring it to a GP for the blood draw. The longer Lyme is in the body, the harder it is to get rid of.
I would also highly recommend getting liposomic Vit C- it is super bio-available and I was able to get it on amazon. It is a packet of "goo: that you mix in water. It doesn't taste bad, just a weird texture. Much better than some of the other meds I have taken LOL That helps to boost the immune system so it can fight the darn buggers.
The only thing i am not sure about is if she should start it before any additional blood work. The last thing you would want is to have the Vit C start working, and skew the blood work. You might be able to find that info out online.

PLEASE feel free to ask me anything.

Good luck!

 

[4PeasInMyPod]

Thank you, I will look into lymetap today. Cheyenne took a course of antibiotics (doxy I believe) for 2 weeks following the positive test results for RMSF. Do you happen to know the treatment protocol for lyme?

Of course, I can't find where the info on my computer is for the financial aid. But I somehow and very oddly remembered the name of the site.


www.lymetap.com

Where do you live? I guess that I am "lucky" in that NJ is endemic for Lyme. Some GPs will treat for Lyme prophylacticaly, if there is a tick bite. It seems insane to me that if your have a tick bite and RMSF, that they wouldn't treat for Lyme too. But like we said, ID drs, for the most part, are a huge part of the problem.

Like Cinda said, it is really hard for kids who miss school to reintegrate. Scott (son) had to be on home instruction for three months when he was in 8th grade. Time stoof still for him, while he was home. Everyone else had moved on, 3 months is a long time in 8th grade.
It was so hard to see him struggle, but he got through it. Took time, but moving on to HS helped.

I guess I can't say it enough, but it is worth the money to get Igenix testing. IIRC you can request a kit at their website and bring it to a GP for the blood draw. The longer Lyme is in the body, the harder it is to get rid of.
I would also highly recommend getting liposomic Vit C- it is super bio-available and I was able to get it on amazon. It is a packet of "goo: that you mix in water. It doesn't taste bad, just a weird texture. Much better than some of the other meds I have taken LOL That helps to boost the immune system so it can fight the darn buggers.
The only thing i am not sure about is if she should start it before any additional blood work. The last thing you would want is to have the Vit C start working, and skew the blood work. You might be able to find that info out online.

PLEASE feel free to ask me anything.

Good luck!

 

[faerywings]

Yeah, 2 weeks of doxy is just not enough
4 weeks is ok if it is right after the bite. 6 weeks is better. But if it has been a longer time since the bite, like your DD, different combinations of abx are typically needed.
There are three forms that the bacteria takes on, spirochetal, cell-wall deficient, and cyst. Different abx are needed to treat the different forms.
To add into the treatment difficulties, each person reacts differently to the abx, so one cocktail might work for one person but not the other. Believe me, in my little family of four, we all have been on different protocols (and this being with only two doctors and my LLMD has treated the kids' LLMD!!) to varying degrees of success. It took my LLMD since 2008 to get me on one that is working. Name an abx and I will guarantee one of us has tried it. ound:

I wish I could help more, except to rec. getting an Igenix test done for Lyme, Bartonella, and Babesia. If she tests positive on any of them, the next step would be to find a Lyme literate dr for treatment.

Again, I apologize for making this sound so gloom and doom. But the upside is that the less time that a person is infected *greatly* improves chances of successful treatment. My fam is a "worst case scenario" in that my DH has mostly likely had this since the 70's, and I have had it for 20 years and my kids were born with it. That is along time for the damage to be done. But in "Lyme Years" your DD has amazing chances of beating this, if she does in fact have Lyme.