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Post by lieme on Jun 25, 2017 21:37:43 GMT
I just wanted to take a moment to say that I am SO proud of the lyme community! We came together and our representatives in DC are finally listening! YAY! We are closer every day to making big changes that will positively impact lyme patients worldwide! I am proud to be a part of the TruthCures movement, and in light of the recent suicides I am working that much harder to make sure that this all ends.
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Post by Admin/ Traveler on Jun 25, 2017 22:12:15 GMT
YAY! And I know you are knee deep in this too, Lieme! So, thank you for that.
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Post by DJ on Jul 6, 2017 13:57:45 GMT
Thank you lieme, we have to keep fighting for a cure or at least some kind of treatment. I been fighting for 14 yrs.
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Post by Little Bear (LB) on Jul 13, 2017 16:44:35 GMT
Thank you lieme, we have to keep fighting for a cure or at least some kind of treatment. I been fighting for 14 yrs. Hi DJ!-
Have you been treating Lyme for 14 years? How many years did it take you to find out you had Lyme?
Sending you many (((HUGS!)))
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Post by DJ on Jul 16, 2017 0:59:00 GMT
Thank you lieme, we have to keep fighting for a cure or at least some kind of treatment. I been fighting for 14 yrs. Hi DJ!-
Have you been treating Lyme for 14 years? How many years did it take you to find out you had Lyme?
Sending you many (((HUGS!)))
yes little bear, I learned I had lyme the first blood test they took, took me 3 months to get to a doctor,( state insurance, lost my job), etc, but there was no such thing as lyme disease back then. I fought with doctors a lot of times! I didn't have the bulls eye rash, I had hive like red marks all over me 2 days after I was bite, also swollen up. I went to hospital, and ended up walking out, went home and couldn't get out of bed or feed myself for a while. Thank God, I worked in the medical field and "HELPED" myself get back on my feet. The last doctor I went to was CDC, I even tested positive with them, She gave me 6 different highest dose of antibiotics she could do, but she ended up giving me the IV for only 3months, but it did help me get up and moving ( this all was in a matter of 4/5 yrs with CDC. I went to 7 different doctors and all lyme test were positive,! ;-| after fighting n all the bs from the doctors, I said the hell with it, I did my own treatment of vitms. Than I meant a very special friend on a forum and we became best friends, she had LD too. We went through holy hell, but we finally found something that works for us. For the past 2 yrs I have treated myself with essential oils. Everyone that has Lyme has a not so good story. I still have problems, but I am up moving, doing things and myself, my husband and I travel when we can. I work out in the yard, I do spray myself thought now, Hubby is very understanding about lyme disease. He meant me a yr after I was bite. ;) That's a little of my story and I am sticking to it! giggle .. Hugs back
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Post by Little Bear (LB) on Jul 16, 2017 3:07:02 GMT
Hi DJ!-
Have you been treating Lyme for 14 years? How many years did it take you to find out you had Lyme?
Sending you many (((HUGS!)))
yes little bear, I learned I had lyme the first blood test they took, took me 3 months to get to a doctor,( state insurance, lost my job), etc, but there was no such thing as lyme disease back then. I fought with doctors a lot of times! I didn't have the bulls eye rash, I had hive like red marks all over me 2 days after I was bite, also swollen up. I went to hospital, and ended up walking out, went home and couldn't get out of bed or feed myself for a while. Thank God, I worked in the medical field and "HELPED" myself get back on my feet. The last doctor I went to was CDC, I even tested positive with them, She gave me 6 different highest dose of antibiotics she could do, but she ended up giving me the IV for only 3months, but it did help me get up and moving ( this all was in a matter of 4/5 yrs with CDC. I went to 7 different doctors and all lyme test were positive,! after fighting n all the bs from the doctors, I said the hell with it, I did my own treatment of vitms. Than I meant a very special friend on a forum and we became best friends, she had LD too. We went through holy hell, but we finally found something that works for us. For the past 2 yrs I have treated myself with essential oils. Everyone that has Lyme has a not so good story. I still have problems, but I am up moving, doing things and myself, my husband and I travel when we can. I work out in the yard, I do spray myself thought now, Hubby is very understanding about lyme disease. He meant me a yr a after I was bite. That's a little of my story and I am sticking to it! giggle .. Hugs back Hi DJ!-
Thank You for taking the time to share your story!
You have been through soooo much! It always saddens me to hear these stories. The stories of people not being taken seriously by doctors and feel like they don't know where to turn for help, since no one will help them. I can also relate. I have no idea how many doctors I have seen through the years. I also lost my job due to symptoms (haven't worked since 2014) and I use to be a surgical Tech.
It is so sad how much we have to become our own doctor through this horrible disease. And we are forced to learn so much in hopes of getting better.
The frustrating part of this whole disease is the guessing of what meds., supplements, herbs, or other things to try in hopes of healing ourselves.
I am happy to hear that the essential oils are somewhat helping you! I know that you still have symptoms, but I am happy to hear that you are able to be a little active again!
It is wonderful that your husband is very understanding and supportive about your symptoms due to Lyme. My husband is also very kind to me through all this mess.
Thank You!
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Post by DJ on Jul 16, 2017 19:38:04 GMT
Thank you also. Yes it's not an easy thing to have Lyme. I have lost a lot of friends and family over it. But o well, it was meant to be that way. I was a medical asst/phlebotomist and was on my way to being a vet tech in Dela, but dear ole lyme had other plans.
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Post by Admin/ Traveler on Jul 17, 2017 19:22:23 GMT
So, I'm going to tell on DJ. She and I were fast friends after we met on healingwell. She helped me through my darkest of days, back when I tried to use abx and had the year long herx from H*LL. Without her and her willingness to talk on the phone daily, I would have never been able to hold on through it all. We talked and shared and made up goofy stories to help us get through. It's friends like that that we all need - someone we can share with and have understanding. I have been very blessed to call her my very good friend for the last 10 years. I call her my Sis. I have spoken about her off and on on healingwell over the years, as I tried to encourage others to keep trying different things to help.
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Post by Little Bear (LB) on Jul 19, 2017 19:20:31 GMT
I have lost friends from a very young age. I missed a lot of school when I was 10 years old due to constant headaches. I had to learn to be my own best friend.
Some of my family said very hurtful things to me through the years because they didn't understand my symptoms and thought that I was just lazy or being a rebellious teenager.
This disease is a very lonely disease to have.
It is nice to have communication with others online that can relate.
Thank you for your support!
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Post by Admin/ Traveler on Jul 20, 2017 19:21:59 GMT
I have lost friends from a very young age. I missed a lot of school when I was 10 years old due to constant headaches. I had to learn to be my own best friend.
Some of my family said very hurtful things to me through the years because they didn't understand my symptoms and thought that I was just lazy or being a rebellious teenager.
This disease is a very lonely disease to have.
It is nice to have communication with others online that can relate.
Thank you for your support! I think a lot of us have gone through at least some of that kind of stuff as well. I know I have, I've experienced much of what you describe for most of my life. I've been very lucky and blessed to have met some of the best people through having these infections though. People that are kind, caring, understanding and very giving of their time and compassion. I really no longer look for understanding from those that have never experienced this level of debilitation from these diseases.
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Post by girlie on Jul 21, 2017 6:49:23 GMT
Well, I didn't grow up with these infections...so I can't even imagine how hard that must be.
But, I sure learned who my 'real' friends are since having Lyme.
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Post by Admin/ Traveler on Jul 21, 2017 12:56:58 GMT
Well, I didn't grow up with these infections...so I can't even imagine how hard that must be. But, I sure learned who my 'real' friends are since having Lyme. It's a shame that it works that way, that we find out who our 'real' friends are when we get sick, but it does for a lot of us.
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Post by runner on Jul 22, 2017 17:15:19 GMT
The only thing to do is keep bringing it to the forefront every chance there is. This year I put Lyme Disease Awareness Month banner on my Facebook page. And I wrote about Lyme Disease, where before I just kept it quiet.
Was amazed on how many people had questions and a few even had friends going through it now.
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Post by Little Bear (LB) on Jul 22, 2017 18:52:15 GMT
The only thing to do is keep bringing it to the forefront every chance there is. This year I put Lyme Disease Awareness Month banner on my Facebook page. And I wrote about Lyme Disease, where before I just kept it quiet. Was amazed on how many people had questions and a few even had friends going through it now. Hi runner!-
WOW! Good for You to share your knowledge with others about this terrible disease. I personally think that this will be the only way we can make a difference.
Too many people are getting false information from their doctors and the CDC.
Thank you for your efforts!
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