# Lyme Disease Awareness Month!



## Grace'sMom (Feb 22, 2012)

It is May! 

Today is the first day of Lyme Disease Awareness Month!

May is a big deal for the Lyme Community… and this year we have our first Worldwide Lyme Disease Protest Day taking place May 10th-11th.

I was planning to write this really nice piece about Lyme Disease to share today… however, as it sometimes happens with Lyme Disease, my brain is not wanting to cooperate right now. 

I will, however, be writing daily on my Lyme Blog: purplelymegirl - for May… so you all are welcome to read there.

I also made a video, which I wanted to debut on May 1st, however it was leaked and you all know how the internet works from there…. Someone shares it with someone else and so on and so forth. So I let it go public with a small group. After being public for only 3 days it is already at 550+ views. I’m told this is very good for a Lyme Disease YouTube video. 

You all can help by sharing it, and telling those you share it with to share it….

I think my video says things better than I can today, but I will hopefully be back through the month to share Lyme Disease information with you all.

The one thing I will ask is that you do not post my name if leaving me a note on YouTube... thanks .

Video Link: Tick, tick, tick... It's Time to See Lyme - YouTube​
Now for my Gus and Grace.... I wanted to sew them outfits for May, but I'm not able to sit for long periods right now so sewing is, sadly, not something I can do. So I asked Marti to make both of them special Lyme Awareness TTogs. I gave her an idea of what I wanted and then let her decide how to do it...and she did a wonderful job  Gus and Grace will wear these anytime we go out this month.

After I got them, I decided Grace needed special bows. I was going to try to make them, but my hands are not in the best shape right now. So I asked Marj to make Gracie a handful of bows that she can wear with her special dress. I sent her photos of Marti's work, asked for black and lime green, and let her do her thing... and the bows are beautiful...








I wanted to redo Grace's photos with her new face trim, but was just too tired, but I like these ones  I'm sure they will get lots of photos throughout the month. ... Thank you Marti and Marj!!


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## Furbabies mom (Jul 25, 2011)

That video was fantastic! Is there a way to prevent Lymes? Do sprays work, and what kind. What we do to prevent Lymes, and still enjoy the outdoors, warm sunshine, fresh air, and working in the garden? I hope that things change so it is recognized , and insurance companies acknowledge that it is real, so they can take responsibility of providing the proper care for people with Lymes. I'll certainly keep you in my prayers.


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## WeeGrace (Oct 22, 2012)

Awww video is brilliant so it is and loving grace and guss' support!!!! Did you make the clothes?


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## WeeGrace (Oct 22, 2012)

Deborah I'm loving the photo on your foot note of the fluffs are you holding treats?


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## Zoe's Mom88 (Apr 25, 2011)

Tori, that video was moving and touching.......a story well told. I sure hope that things can change and Lyme Disease will be recognized as a real illness so you and others can be treated appropriately before it gets out of control. 

Prayers for you to feel good for good and not to suffer from this disease.


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## Grace'sMom (Feb 22, 2012)

WeeGrace said:


> Awww video is brilliant so it is and loving grace and guss' support!!!! Did you make the clothes?


Thank you Grace  I didn't make the clothes.... Marti made them special for us :wub:




Furbabies mom said:


> That video was fantastic! Is there a way to prevent Lymes? Do sprays work, and what kind. What we do to prevent Lymes, and still enjoy the outdoors, warm sunshine, fresh air, and working in the garden? I hope that things change so it is recognized , and insurance companies acknowledge that it is real, so they can take responsibility of providing the proper care for people with Lymes. I'll certainly keep you in my prayers.


Thank you Deb.... My big thing this year is going to be encouraging people to educate themselves. Because that is the best prevention.

The IDSA and the CDC have so many untruths out there that has become the general public's knowledge of Lyme Disease and Tick Borne Illness.

I'll write more about that on my blog... some sneaky stuff they are doing.

There are ways to prevent Lyme Disease.

1. Check for Ticks - DAILY during high tick season - which is right now until it starts to cool down. Then do a tick check every 2-3 days. This is the most important part of prevention. Check for ticks... Get a mirror if needed!








2. Tick repellent - either natural, or chemical. If you go the chemical route use the ones that are only applied to clothing. It's recommended you keep a long sleeve shirt, long pants, socks and shoes that are only for hiking or working in the yard - this way you can spray them once a week or once every other week. Make sure to use repellent on your pets, as well.

3. Cover up - I know it isn't ideal. But when you go hiking, especially, make sure you are dressed to prevent ticks - wear long pants that are tucked into socks, wear a long sleeve shirt (if not at least a short sleeve one), wear a hat. Wear light colored clothing so that any "dirt specks" can be easily seen. Nymph ticks are teeny tiny... as small as a poppy seed.

4. Stay healthy - A strong immune system will better fight off Lyme and Coinfections if you are bitten by a tick and receive prompt treatment.

5. Read about Lyme - ILADS - Lyme Disease Educational Videos, Lyme Disease Conferences, and LymeTeam, What is Lyme Disease?



Thanks for asking questions, Deb :thumbsup:


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## Zoe's Mom88 (Apr 25, 2011)

Forgot to mention, I love the clothes and bows for Gus and Grace. :wub::wub:


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## hempsteadjb (Mar 1, 2012)

Video is awesome, you really did a great job!!!


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## MoonDog (Jun 6, 2011)

:aktion033: Tori, you did an AMAZING job on this video! :aktion033: 

Although it made me very sad, I learned so much from it. God bless you my friend.


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## maltese manica (Nov 6, 2012)

Tori you video was amazing!! Thanks for sharing on what you and others go through on a daily basis! Grace and Gus look great showing off for their support for Lyme diease!!!


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## Yogi's Mom (Jan 6, 2013)

*Your Fantastic!!!!*
*Nickee in Pa**


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## Kathleen (Aug 4, 2011)

Tori, your video is wonderful. I am so sorry that you are living with such pain. I wish that I could magically make it go away for you.
You are a very strong person.
You have mentioned "brain fog" a few times, and I have to tell you that I was so surprised that you sometimes have that kind of symptom. You are a wonderful writer, and I always look forward to your posts. They are always so smart and insightful and helpful. I feel like I know Gus and Grace from the way you write about them.
I am so thankful that you are using your super writing skills to share your story with us and with the world. Before I "met" you, I had no idea how serious Lyme Disease could be. I did not know how it could affect someone's life so much. We now are starting to see public awareness campaigns to try to prevent it, but why is there very little information about how very serious a disease it is? Why is it being treated differently than any other disease? Is it because it is difficult to diagnose? What can we do to help? 

The outfits and bows for Gus and Grace are adorable. I am sure you will get lots of questions when you go out with them and will be able to educate more people as a result.


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## Rin (Feb 6, 2013)

Wonderful, insightful video!
I too learned a lot in this video from what you have to deal with everyday of your life to what are great country is doing to help which us not enough.
God speed and keep up the fight.


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## Grace'sMom (Feb 22, 2012)

Kathleen said:


> Tori, your video is wonderful. I am so sorry that you are living with such pain. I wish that I could magically make it go away for you.
> You are a very strong person.
> You have mentioned "brain fog" a few times, and I have to tell you that I was so surprised that you sometimes have that kind of symptom. You are a wonderful writer, and I always look forward to your posts. They are always so smart and insightful and helpful. I feel like I know Gus and Grace from the way you write about them.
> I am so thankful that you are using your super writing skills to share your story with us and with the world. Before I "met" you, I had no idea how serious Lyme Disease could be. I did not know how it could affect someone's life so much. We now are starting to see public awareness campaigns to try to prevent it, but why is there very little information about how very serious a disease it is? Why is it being treated differently than any other disease? Is it because it is difficult to diagnose? What can we do to help?
> ...



Kathleen,

Thank you.

I know it's hard to believe I have brain fog... I don't know how to say this without sounding like I'm gloating... so I'm sorry. But I do think it's important....

I am very intelligent. I was once an exceptional writer. I started writing when I was 3 years old, by the time I was 7 my school library was "publishing" my short stories. All through middle school and high school I won state and even national awards, I won a partial scholarship. I was also a gifted artist. When I was 14 I sold a painting for $200 which is a big deal for a 14 year old. I had potential. The first time I went off to college, I went in with plans of some sort of creative arts major... I took art classes, creative writing courses. So when people say I'm a good or wonderful  writer... Well, I thank them, and I am grateful for what I have now, that I am still able to put my story into words. But then it also makes me sad because Lyme has stolen so much of my brain.... Even writing this I'm in tears knowing how much Lyme has taken. To know what you once had... to have that talent, and then have it slowly stolen from you is.... it's cruel.

My vocabulary is a far cry from where it once was... as is my grammar. I often forget words entirely or replace them with similar ones... Sometimes I will be writing or speaking and then my brain just "resets" and I have no idea what I was saying or what I was going to say. I have gotten good at editing and checking things multiple times before sending them or posting them. For years I hid the fact that I was having these struggles.

But... my brain fog... when I am not here for days on end - that is usually a good sign that my cognitive symptoms are worse. On a daily basis, it feels like I have to pull my thoughts and words from behind a gauzy curtain... it takes effort to remember what I want to say/write.

But I can still write, and I can still write well.... So I do feel it's important to share what I can because there are many suffering with Lyme Disease who cannot write, some who cannot even speak. And so no matter how exhausting it is some days, I remember that there are those who cannot give voice or words to their pain.

So thank you. 

"We now are starting to see public awareness campaigns to try to prevent it, but why is there very little information about how very serious a disease it is? Why is it being treated differently than any other disease? Is it because it is difficult to diagnose? What can we do to help? "

This is where it gets tricky, and I hope I can write about this in my blog well enough that people can understand it.

This is where the government makes those of us with Lyme look like nut cases.... They label us as hypochondriacs. I know when I talk to people about the reason why, they look at me like I am paranoid and either do the slow "no sudden movements" nod or quickly agree and change the subject LOL

Lyme Disease is the only disease that the IDSA tries to silence. There is no other illness that they go to the levels they go to with Lyme Disease to try and stop it from being talked about.

They even sent out a memo last year to physicians with specific instructions about how to handle a patient who brings up Chronic Lyme Disease. It's scary.

Under Our Skin is a good place to start. I've heard the documentary Under the Eightball is another great one (I'm too chicken to watch it -- I don't do well with scary images LOL).... Both are Lyme documentaries. Under Our Skin can be watched free online on Hulu.com

I am going to try to type some things up though for this month on my blog. Will let you know when I do... because it is too long to write here, and this is already so long!



Thank you all for the wonderful support. I hope you continue to educate yourselves about the truth of Lyme Disease.... 



I haev to go lay down now. this was long LOL


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## Daisy's Mommie (Sep 24, 2012)

Tori, You are a very brave lady to have gone through so much and still have so much love in your soul. I will admit, I thought lyme disease was no big thing. That if you got bit by a tick, antibiotics would cure you right up. Thank you for opening my eyes to the horror that is Lyme. Just recently, someone I know--a young man in his late 20's was diagnosed with Lyme after YEARS of mis-diagnosises. He is very depressed and his parents are afraid to leave home because they are afraid he will end his life. Would it be ok with you for me to direct his mother to your video so she can possibly find a way to help him? My prayers are with you and I pray that there will be a cure in your lifetime. Again, you are a very amazing woman and hope that one day I will meet you and can put my arms around you and give you the hug that is waiting in my heart. Much love, hugs and puppy kisses.. Abby


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## Grace'sMom (Feb 22, 2012)

Daisy's Mommie said:


> Tori, You are a very brave lady to have gone through so much and still have so much love in your soul. I will admit, I thought lyme disease was no big thing. That if you got bit by a tick, antibiotics would cure you right up. Thank you for opening my eyes to the horror that is Lyme. Just recently, someone I know--a young man in his late 20's was diagnosed with Lyme after YEARS of mis-diagnosises. He is very depressed and his parents are afraid to leave home because they are afraid he will end his life. Would it be ok with you for me to direct his mother to your video so she can possibly find a way to help him? My prayers are with you and I pray that there will be a cure in your lifetime. Again, you are a very amazing woman and hope that one day I will meet you and can put my arms around you and give you the hug that is waiting in my heart. Much love, hugs and puppy kisses.. Abby


Abby,

Thank you :blush:

Please do send my video to his mother, and also let her know I will be happy to speak with her and her son, and there is also a very large Lyme Community that will embrace them, also. There are many groups on Facebook, and some in other areas on the web that I can direct them to.

And thank you, again for the kind support.



You all are so wonderful here  I wish my family was like this...


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## Kathleen (Aug 4, 2011)

Tori, I hope that I didn't make you sad by saying what a good writer you are. I can't imagine how hard it must be to compare what you used to be able to do with what you can do know. I think that even with what Lyme has stolen, you are blessed with a gift far greater than what most of us have. You are using that gift to try to fight for others who can't fight for themselves, even though it isn't easy for you. That is heroic.


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## Maisie and Me (Mar 12, 2009)

Oh Tory, What can I say but I am redoubling my efforts in praying for a cure for you :wub: and all victims of Lyme Disease. I am so sorry you have had so much suffering but I truely believe your writings and all your hard work will pay off.

This video was outstanding and I totally admire you.:wub:


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## Grace'sMom (Feb 22, 2012)

Kathleen said:


> Tori, I hope that I didn't make you sad by saying what a good writer you are. I can't imagine how hard it must be to compare what you used to be able to do with what you can do know. I think that even with what Lyme has stolen, you are blessed with a gift far greater than what most of us have. You are using that gift to try to fight for others who can't fight for themselves, even though it isn't easy for you. That is heroic.


:grouphug:

No worries


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## Grace'sMom (Feb 22, 2012)

Thank you Michelle


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## Maglily (Feb 3, 2009)

Your video is amazing! well done Tori, it's very informative and inspirational. Praying for more awareness and a cure!


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## pippersmom (May 21, 2012)

Tori, your video was amazing but it also made me sad. I didn't know what a horrible disease lyme disease is and I feel so bad that I didn't realize how badly you suffer with this and all that it has taken from you. Stay strong brave lady!


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## Madeleinesmommy (Nov 30, 2012)

I watched your video as well and wow that was a good video! Very powerful. It's so sad when people judge other's illnesses because they cannot see them. I hope you are having a good day today and the pup's outfits are adorable!


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## Grace'sMom (Feb 22, 2012)

I had to update my video.

The woman who leaked it had regrets...so I tried to fix it in youtube but their editor sucks.

It was bothering me, and apparently the edits don't work on mobile viewings.... 

So this means it has a new link... bummer, I was already up to almost 700 views!

But.... better to do things in kindness.... so here is the new links to the same video (with one photo changed)....

Tick, tick, tick... It's time to see Lyme - YouTube

Thank you all 

Tori


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## Maidto2Maltese (Oct 19, 2004)

Your video is awesome!
Don't know if you recall my friends 12 year old grandson who got ill before Christmas... first thoguth flu, when he didn't get over that and sent to medical center... there he was dx with Mono... still didn't get better. Then he was sent to another Medical center where he had 'every test in the book'...including tick borne illnesses... all neg. 
As things progressed, He was very weak and needed help with walking. Still no dx.
His parents kept pushing to treat for tick borne illness but without positive dx.. they would not do so. 
FINALLY they found a Dr who agreed to treat... and he started to improve almost immediately. Not sudden wellness by any means... a long road and still going but so much better. He only started trying full day at school a couple of weeks ago. ( This is all since before Christmas) 
The financial burden has been heavy. As mentioned in your video... I believe treatment has to be out of pocket. 
I will say we have some local politicians in our and neighboring counties who are in the fight to make changes. Some have been personally affected by Lyme disease with family members.....it's hitting home! However I see a long journey before any REAL changes are made but do think it will happen!
The ticks are very active here now... the old advice of them being in high grassy areas/woods no longe holds true... they are in our back yards...no need to go hiking to be in contact with them.. a walk across your yard can do it.
Just yesterday I was out puttering... I cover up from feet to neck even on hottest days when working out there. I was taking a break and saw a tick drop off my bangs onto my hand! I don't recall being directly under any tree or shrub..but somehow it got onto my head. I now will be using the 'sticky-roller' ( for lint) on my head as well as overall body ( I hadn't been doing that) .
Know that I will be keeping you in my prayers!


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## sherry (Jan 4, 2013)

Grace, WOW! Your video is so powerful! It brought tears to my eyes! I did share it on FB! I must say, what I "thought" I knew about Lyme disease was so not what Lyme disease is really! I knew you were suffering with this disease but now my eyes are open to how horrible this disease is! God bless you and all who live with this nightmare!
And not to leave the kids out, Gus and Grace look awesome in their new pics!


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## IzzysBellasMom (Jan 16, 2013)

Tori, what an informative video. I love the new clothes for Gus and Grace. I took a quick pic of Izzy this morning after I did her topknot with you in mind. We had a lime green boa and barette. So here she is helping you support Lyme. (Oh and she decided it was much more fun to eat the boa then wear it so I only got the one good one, LOL)


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## Grace'sMom (Feb 22, 2012)

Maidto2Maltese said:


> Your video is awesome!
> Don't know if you recall my friends 12 year old grandson who got ill before Christmas... first thoguth flu, when he didn't get over that and sent to medical center... there he was dx with Mono... still didn't get better. Then he was sent to another Medical center where he had 'every test in the book'...including tick borne illnesses... all neg.
> As things progressed, He was very weak and needed help with walking. Still no dx.
> His parents kept pushing to treat for tick borne illness but without positive dx.. they would not do so.
> ...


Thank you for sharing that story.

I didn't know that his case went all the way to Lyme... I think I had a "drop off" around that time and wasn't so active on the forum. holidays are so stressful and exhausting.

I am glad he found a doctor to treat him. He was treated within the first 6 months so that is good, and he is young and a male (pubescent girls are hit much harder) so that is in his favor... It is a long road.

And yes.. ticks are everywhere. And the myth that ticks in your area will not carry Lyme is also just that: myth. If you have birds around - you have ticks. Birds = Tick Airlines. There are infectioned ticks from other countries hitching rides to states all over the US... so this means multiple strains of Lyme.

Thank you again for sharing :wub: 



sherry said:


> Grace, WOW! Your video is so powerful! It brought tears to my eyes! I did share it on FB! I must say, what I "thought" I knew about Lyme disease was so not what Lyme disease is really! I knew you were suffering with this disease but now my eyes are open to how horrible this disease is! God bless you and all who live with this nightmare!
> And not to leave the kids out, Gus and Grace look awesome in their new pics!


Thank you :grouphug:



IzzysBellasMom said:


> Tori, what an informative video. I love the new clothes for Gus and Grace. I took a quick pic of Izzy this morning after I did her topknot with you in mind. We had a lime green boa and barette. So here she is helping you support Lyme. (Oh and she decided it was much more fun to eat the boa then wear it so I only got the one good one, LOL)


Oh Izzy!!! You are beautiful in your lime green!! :happy:

I'll tell you a secret... Gracie loved to eat the boat too! :wub:

Thank you so much, that is so sweet


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## Madison's Mom (Dec 26, 2007)

Bravo! Absolutely excellent and heart-rending. I was so ignorant of Lyme Disease and the destruction it causes. Keep fighting...educating the world is key to changes in the system.


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## babycake7 (Jan 30, 2012)

Tori, the pictures of Gus and Grace are fabulous. Marti and Marj did such a great job on the bows and outfit! The video is wonderful. I really admire you. I think you are amazing and inspirational!


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## Grace'sMom (Feb 22, 2012)

Thank you Glenda and Hope


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## allheart (Oct 3, 2008)

Tori, amazing job!!!!! I just want to give you such a big hug, and I do apologize to everyone, for not being around. Tori, thank you so much for posting this and the amazing video, bless you. I am finally, under the care of a LLMD. I still have Lyme Disease, which then developed into a co-infection that begins with a B. It is in my brain, and effects everything neurologic. Memory, word finding, my speech, oh sometimes, I apologize all day long, as it is hard to understand what I am saying. My LLMD Doctor, an angel on earth, is treating the co-infection first. I can write paragraphs, but can't fully comprehend reading paragraphs. The sad thing is, it doesn't have to be this way. I feel blessed, one of the lucky ones, even with all the pain, walking is, I can't even describe it, but I know you know Tori. At my doctors office, there are folks getting treatment FINALLY, who have had it for 20 years. Bless them. 

I pray Tori, that you get better. Tori, we will. My focus is just like yours. Spread awareness. I do not want anyone to ever get this. Sadly, there, is no vaccine for it.

Tori, I have watched Under My Skin, it is an amazing, informative documentary. Yes, it can be scarey, but most importantly, you will see so many, that traveled the very road we did and are. It is so worth watching. I encourage everyone, when you have a free hour to watch. Here is the link http://www.hulu.com/watch/268761

There is a beautiful young lady, who was told, "oh, your a pretty girl, I guess you are not getting enough attention." Well, a doctor, a loving doctor got her the right treatment, she is so much better, and sadly, that doctor, lost his license, for treating a lyme patient the right way.

My doctor also told me, about the spray, that you can use on your clothes. My only hesitation with that, is he said the word toxic. I just don't want to take the chance of the babies, inhaling that. 

But as Tori, said, you can spray bug repellant on you. Wear long sleeves, and cover your skin as much as possible. 

There was a conference a couple of weeks ago in Hersey, PA for doctors to attend. My doctor was there, and said, it was standing room only. Awesome. There was a Neurologist there, a female doctor, who was so beside herself, as she saw so many patients, with lyme, but she had no idea how to treat them, but bless her, she wanted to know everything.

There was also a doctor that went, with great skeptisim, after the conference, he now, is no longer a skeptic, and is on-board with ensuring Lyme patients get the right treatment.

Only 30% of people get the bullseye rash. Thank heavens there is something that we can apply to our furbabies, so ticks leave them alone. 

Before I was blessed by someone so special, to let me know about her LLMD, who is now my doctor, I honestly wanted to just go to my vets office, and say, help me please. 

Sorry, for the long post, but it is my hearts desire, that Tori, you get better, and that no one, gets Lyme. It's not a scarey thing to be informed. 

Again, here is the incredible documentary. http://www.hulu.com/watch/268761 Pennsylvania, is now the number 1 State, for incidents of Lyme Disease. 

In the documentary, you will also see a lovely young lady, that always was a U2 Fan. She now works with the band, setting things up, but has Lyme disease. She had to move to Seattle to get proper treatment.

Tori, you will see, people, just like you and I, who were told all the same things.

Hugs to you Tori. Hubby is getting a green bulb for our outside light, in support of Lyme Awareness. 

Oh the outfits are adorable.

My thoughts and prayers are with you Tori, and to all of you.

It feels so much better, even though it's a long drive to my doctor, to no longer be looked at, like I have 6 heads.

I had a Neurolgist, feel my knee, and he said, "Well, you can't fake that". Huh?

I also have polyarthritis. 

No, this is not about me, it's my strong desire, to raise awareness. As I wrote, I do not want to see one person get Lyme. 

Tori, if and when you are up to it, take a look at the documentary. You will no longer feel alone.

All my love,
Christine

P.S. I do chuckle and say to myself, um, did I really need my brain to be effected, I'm ditzy as it is .

xoxoxoxo


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## Snowball Pie's Mommi (Oct 16, 2008)

allheart said:


> Tori, amazing job!!!!! I just want to give you such a big hug, and I do apologize to everyone, for not being around. Tori, thank you so much for posting this and the amazing video, bless you. I am finally, under the care of a LLMD. I still have Lyme Disease, which then developed into a co-infection that begins with a B. It is in my brain, and effects everything neurologic. Memory, word finding, my speech, oh sometimes, I apologize all day long, as it is hard to understand what I am saying. My LLMD Doctor, an angel on earth, is treating the co-infection first. I can write paragraphs, but can't fully comprehend reading paragraphs. The sad thing is, it doesn't have to be this way. I feel blessed, one of the lucky ones, even with all the pain, walking is, I can't even describe it, but I know you know Tori. At my doctors office, there are folks getting treatment FINALLY, who have had it for 20 years. Bless them.
> 
> I pray Tori, that you get better. Tori, we will. My focus is just like yours. Spread awareness. I do not want anyone to ever get this. Sadly, there, is no vaccine for it.
> 
> ...


Oh my goodness! Christine, I swear on my life that I was going to ask Tori to PM you. And, I was going to phone you about Tori's very inspirational and informative video. How amazing that you and I were reading Tori's thread at or about the same time this evening ... well, I mean the middle of the night! LOL Christine, I send you lots of hugs and love. I know how devastating this disease has been for you, too.

Tori, I can't say enough about how impressed I am about your outstanding video.

Just recently, someone asked me if I have been tested for Lyme's. Even though I do have MS and fibromyalgia ... I did see one doctor several years ago (about something else) who thought I might have Lyme's. In fact, she wanted me to be treated for it. 

A long story ... but, around the same time, I was under testing with a new neurologist. The neurologist said I shouldn't be consulting with another doctor ... and, told me I didn't have Lyme's ... that I have MS! Needless to say, I never went back to that neurologist. How dare him tell me I didn't have Lyme's when he never did one test for it! So, I completely understand that some doctors don't seem to take it seriously enough.

There are specific tests for MS ... the MRI's, spinal taps, eye testing for optic neuritis, and another test that I can't think of at the moment (blame it on the MS ... LOL) However, I hate it when I might be feeling numbness in my face or have chest pains ... and, my internist will say it's just the MS. In the meantime, I could be having a heart attack or a stroke. So, I can relate to how one might have Lyme Disease that might go undiagnosed ... if that makes sense. 

Tori, I am so sorry you have had to endure ongoing pain for so long. You are an amazing and inspirational young woman. 

I love the pictures of Gracie and Gus. I wish I could hug you all in person.


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## allheart (Oct 3, 2008)

Snowball Pie's Mommi said:


> Oh my goodness! Christine, I swear on my life that I was going to ask Tori to PM you. And, I was going to phone you about Tori's very inspirational and informative video. How amazing that you and I were reading Tori's thread at or about the same time this evening ... well, I mean the middle of the night! LOL Christine, I send you lots of hugs and love. I know how devastating this disease has been for you, too.
> 
> Tori, I can't say enough about how impressed I am about your outstanding video.
> 
> ...


 
Oh my darling Marie, how I love you :wub: You my beautiful friend are such an inspiration as well. And I so agree with you, Tori, is amazing. I love her, admire her, and look up to her. 

Marie, thank you so much for thinking of me, oh how I miss you. So much. 

I hate to sidetrack, did you ever have a spinal tap? Marie, I did. :w00t: Not to scare anyone, it could just be me, but painful, oh my gosh. I don't know if that's normal, but I am not ashamed to admit, oh did I cry.

My darling Marie, again, how much I love and miss you. Call me anytime you are up to it. I can't find your number. 

Thank you again for thinking of me, you are always in my heart.

Tori, once again, bless you, you truly are amazing.


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## Grace'sMom (Feb 22, 2012)

allheart said:


> Tori, amazing job!!!!! I just want to give you such a big hug, and I do apologize to everyone, for not being around. Tori, thank you so much for posting this and the amazing video, bless you. I am finally, under the care of a LLMD. I still have Lyme Disease, which then developed into a co-infection that begins with a B. It is in my brain, and effects everything neurologic. Memory, word finding, my speech, oh sometimes, I apologize all day long, as it is hard to understand what I am saying. My LLMD Doctor, an angel on earth, is treating the co-infection first. I can write paragraphs, but can't fully comprehend reading paragraphs. The sad thing is, it doesn't have to be this way. I feel blessed, one of the lucky ones, even with all the pain, walking is, I can't even describe it, but I know you know Tori. At my doctors office, there are folks getting treatment FINALLY, who have had it for 20 years. Bless them.
> 
> I pray Tori, that you get better. Tori, we will. My focus is just like yours. Spread awareness. I do not want anyone to ever get this. Sadly, there, is no vaccine for it.
> 
> ...


hi Christine 

I'm glad to see you... I know you've been doing treatment. That's hard.... but it's good to see you post and I'm happy you shared 

The first girl in the film - Mandy - she is actually a nurse now  She is doing really well... 

The second girl - Ellen, I believe - She is doing well - she updated a year ago I think.

Under Our Skin is a wonderful documentary and I love that it is free on Hulu.

Another good one to watch is Under the Eightball - they are working to try and get it available online. But right now you have to order the DVD... It's shocking and ..... shocking.

Anyway, Christine 

I'm glad your friend was able to give you a name of a doctor they saw, as I know it was hard for me to find one in your area. So I'm thrilled! And more thrilled that it is working out for you.

I'm currently looking for an LLMD in California or Washington... going out of state! That should be interesting.

I know I need IV.... it will be very pricey, I know you know  .... so I am researching and researching these doctors in CA and WA because if treatment is going to be that expensive I want the best doctor I can find.... I just pray they can find insurance loopholes so that my parents aren't having to pay $2,000+ a week out of pocket...

It is scary. So scary I'm up at 2am worrying.

But just gotta put on my brave face and warrior on :supacool:

Love hearing from you  And thank you for the props.... please share it with people 

hugs,
Tori


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## Grace'sMom (Feb 22, 2012)

CAPC Predicts Lyme Disease Forecast










Remember that if you are in the grey areas you still need to check for ticks... the area may be low because of under reporting.

CAPC Predicts Lyme Disease Extremely High This Year -- BEL AIR, Md., April 29, 2013 /PRNewswire/ --


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## Tanner's Mom (May 27, 2005)

Hey Tori, just got back from National's today. Your babies look smashing in their black & green outfits with the matching bows. It was fun coming up with the just the right design. As for Lyme Disease, argh! But a great video.


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## Grace'sMom (Feb 22, 2012)

Thank you Marti 

Everyone who sees their outfits loves them 

Thank you for the great work


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## Kathleen (Aug 4, 2011)

Grace'sMom said:


> CAPC Predicts Lyme Disease Forecast
> 
> 
> 
> ...


Thanks for posting this Tori. We are in the "high" zone.
I have started checking all three doggies and myself for ticks everytime we come in, so thank you


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## zooeysmom (Aug 1, 2011)

Tori, thank you for all of the education on Lyme. I'm so sorry you have to live with such a sh*tty disease. 

Are you familiar with The Secret? It has really helped me deal with my chronic illness. 

Hugs,


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## Grace'sMom (Feb 22, 2012)

Thank you for the support and prayers


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## Snowbody (Jan 3, 2009)

Tori - I didn't see this post or your video until now. I'm in tears. :crying: I wish I could take some of your pain away. You did a beautiful job of bringing the viewer into your world and understanding what it's like to have Lyme. I'm so impressed, and I am a producer! Lyme is such a hideous disease. Our area was one of the earlier ones where people were being bitten by those ticks. I remember a friend in 1990 who got very ill and then remembered having a bulls eye target on her leg. She was treated months or even a year later and I believe is okay now, luckily. I know that is no longer a dependable sign of Lyme. 
I think your video will be a wonderful educational tool. I hope you will try to get it out to the media. I will be sharing it on my FB page later this week. I hope that the medical community will turn around on this and aggressively look for treatments and maybe even a cure. So frustrating when you aren't taken seriously when it comes to something like this. I felt like I was in a similar situation with my son's life threatening allergies. People thought I was a crazy neurotic mother back in the early 90's when there wasn't that much awareness of food allergy and anaphylaxis. I knew that one bite or sip of a food or drink could end his life having seen him nearly die at age 2. It was a long road to be taken seriously and I devoted the last 20 years to educating others about severe food allergies. We would get letters from parents and teachers who saved kids lives because they recognized the symptoms and they knew what to do from the videos. Knowledge is power and I was passionate about it and still am.
Knowing you on SM has been a privilege. You are so smart and giving and talented and loving and strong. :chili: Keep fighting as a mighty warrior and I pray things will change. I love Grace and Gus in their Tanner Togs from Marti and it's so great having bows from Marj. They are so talented too.

One quick question...what's the IDSA? Never heard of it before.


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## Snowball Pie's Mommi (Oct 16, 2008)

Dearest Tori ... I so much appreciate your PM's and video links to me. You had mentioned in the first PM that you didn't want to post it publically unless I gave you permission to do so. It is fine with me if you still wish to do so. Nothing you said offended me at all. : )


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## Grace'sMom (Feb 22, 2012)

Snowbody said:


> One quick question...what's the IDSA? Never heard of it before.


Susan,

Thank you for the kind comments  Please do share it on your facebook!! The more sharing the better.

IDSA - The Infectious Diseases Society of America is a medical association representing physicians, scientists and other health care professionals who specialize in infectious diseases. Started in the 1960s... There are different panels.

The panel that oversees Lyme Disease has 12 members. The main problem is that one of the main members of the panel has ties to almost every patent and grant (other things I can't think of right now) associated with Lyme Disease. Basically he has ties to big $$$$ that if they say Chronic Lyme exists and start allowing treatment his money goes away. All but 2 members (I think 2, maybe only 1) have ties to those things as well. Over 50% of the research they use for justifying the Lyme guidelines are written by themselves or they were cited as sources.

It's messed up. There's more to it but I always sound crazy saying it. Hoping to do some blog entries on it... 

But thank you


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## eiksaa (Jun 8, 2012)

I can't get the video to play. I tried on my phone and just now on my laptop. No luck.  Seems like I am the only one who is having this problem though.


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## Grace'sMom (Feb 22, 2012)

Snowball Pie's Mommi said:


> Dearest Tori ... I so much appreciate your PM's and video links to me. You had mentioned in the first PM that you didn't want to post it publically unless I gave you permission to do so. It is fine with me if you still wish to do so. Nothing you said offended me at all. : )


Thanks Marie.

Marie had posted about her MS diagnosis, and how a doctor once wanted her to be treated for Lyme Disease, but a neurologist talked her out of it, and she was then diagnosed with MS.

Every LLMD will tell you - they have not have one MS, ALS, Parkinson's, Lupus, Fibromyalgia, and CFS patient come into their office who did not have Lyme Disease. They were then treated for Lyme Disease and improved.

The day my Lyme test came back my doctor was planning to diagnose me with Lupus. I had already been given Fibro and CFS diagnoses.

When Marie shared her story my heart sank. I help run a forum for Lyme, plus I'm part of many groups on FB for Lyme...and we hear at least 2 stories a WEEK of people who are coming to us saying, "I was diagnosed with MS, but it turned out to be Lyme." They are usually women... but a few men, as well. MS seems to be one of the most common misdiagnoses for Lyme Disease. If it isn't MS it's Lupus, Parkinson's, or some other syndrome with no known cause.

The tests that they claim are so MS specific are not.

All the things they look for to diagnose someone with MS - you can find in Lyme patients. Not all Lyme patients, but many of them.

Lyme is just a name for multiple strains of borrelia spirochete. Depending on the strain you have, the coinfections, genetics, environmental toxins and exposures, etc... symptoms are so varied.

Lyme tests are so inaccurate because the guidelines were never meant to be for diagnosis. The bands they recognize are only 10 of dozens, so you have to be lucky to get 5 of the 10. If you get 4 of the 10, it doesn't matter they say: Negative.

They are also inaccurate because the test only uses ONE strain of Borrelia... a GERMAN strain. There are many many strains.

I never knew these things until I was thrown into the middle of this. I am now part of a community that is wonderful but it is not one you ever want to be a part of.

However, now that I am... I have met people who were given ALS diagnoses - who were told they were just going to die. And with the help of an LLMD and antibiotics they are still alive and thriving.

I have met people who were treated for MS for decades... who were finally properly diagnosed - with Lyme Disease... and are now in treatment.

They are even finding huge links of Lyme Disease to Autism. Not all Autism, but many cases. Especially in cases where their mothers are labeled with CFS or Fibro. They are finding those are Congentical Lyme cases. There are children with Autism who are misdiagnosed...and when they are properly treated, those children get better.

There was a father who presented at ILADS this past year. His son stopped speaking at 18 months, was diagnosed Autistic. With 6 months of intensive therapy he was not making any improvement. His wife had Lyme Disease, diagnosed after their son was born. So he asked his wife's doctor to test his son, and treat his son. After only 10 days of antibiotics his son began speaking again. At age 4 he no longer had a diagnosis of Autism or any disorders at all. He was a healthy normal kid.

There are so many diseases and disorders out there that have no known cause -- and many of them are because of Lyme Disease. It is not a rare illness. 

Watch Under Our Skin 

It's free on Hulu.

Here are articles on Lyme and MS:

Multiple sclerosis is Lyme disease: Anatomy of a cover-up

LOOKING AT LYME DISEASE - MSIDS: MULTIPLE SCLEROSIS AND SPIROCHETES

This is a good Lyme 101 video -
https://www.youtube.com/watch?v=FHe4LRqyvZE

This man... he is a pathologist.... he did wonderful research on Lyme Disease and Alzheimer's.... He is in Under Our Skin... Alzheimer Borreliosis | Alan B. MacDonald's website


If you have one of the top misdiagnoses for Lyme Disease... I encourage you to research it more.


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## Grace'sMom (Feb 22, 2012)

eiksaa said:


> I can't get the video to play. I tried on my phone and just now on my laptop. No luck.  Seems like I am the only one who is having this problem though.


Oh no!!

I will PM you the link and see if that helps....


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