I feel so alone with my terrifying symptoms.. and horrendous herxheimers. I feel so guilty that maybe I gave this thing to my boyfriend (he has symptoms).. There's more heartache to tell, but it's a soap opera...I'll save it for later.
does anyone else feel really alone, etc.?
-Jennifer
Posts: 67 | From New York | Registered: Dec 2005
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posted
It is an awful disease and can be terribly lonely. I first got sick four years ago and docs in Ireland never ever mentioned Lyme. I finally got a doc in UK to diagnose me last summer and now I am on antibiotics. It is a terrfying disease, but you must try and keep your chin up and keep telling yourself that you will beat it. Everytime I take my drugs I liken them to hand grenades which are blowing this borellia enemy out of the water. Some days it is terribly hard to keep going - that is something all Lymies have in common - but remember the good days are coming. It's natural to feel alone when u are sick, because few people know what u are going through. I did a course in meditation and I found that it really helped. If u think u have passed it onto ur boyfriend there is a herbal remedy in Europe called Samento which can have great results in killing it. It is very simple to take - drops in water - and can be bought over the net. I knnow one woman who had lyme for 12 years and it cured her. Joanne.
Posts: 6 | From Ireland | Registered: Jan 2006
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posted
Jennifer, I cannot begin to tell you how lonely I have felt with this disease over the last 7 years. I hope this will make you feel better once you get a little bit of understanding of your feelings. I feel some of the reason are listed below:
l. Lyme Disease is very strange, complicated disease, caused by a "bug" (yuck), and hard to understand. Almost nobody knows anything about it, including your family, friends, doctors etc. You start off alone and continue the path alone. Sometimes even your spouse cannot understand.
2. You feel so bad sometimes you feel like you may die and sometimes you are scared of your feelings because you almost don't care if you do. Of course when you pull out of your bad Herxing, you know you did not really want to die, you just hated the pain. It moves all over your body, at different times, in different ways. Very bizarre behavior.
3. Unlike other diseases many times you do not look sick though your insides are so ill you can hardly function. Everyone tells you how well you look and you sometimes want to scream about how sick you are but you don't. Or sometimes you do have meltdowns and when you do they are really bid ones and thats OK too. You will have many moments where you cry in private so frustrated over this terrible disease. Know that we all have done that and that is OK.
4. Do research about Lyme Disease and follow Dr. Burrascano's guidlines available on the Lymenet. Knowledge is power and the more you know the less afraid you will be. You will figure out that you will not die from this disease. You will get plenty sick, plenty mad, plenty discouraged and then you will start getting well. Everyone will have input about what they think is wrong with you from food allergies to a cold to a virus to they think its in your head.
5. Be aggressive with your treatments. Just because you start feeling better, do not stop your antibiotics in a short time or you will be right back where you started from. It is in your cells, way deep.
5. When everyone said "What can we do", I said "Check for ticks on yourselves and pray".
6. Do not worry about giving it to anyone else. You never know if you did not get it from them. I never saw a tick, no pets, did not garden. My husband on the other hand golfs twice a week and has for years. In the last year he has had two EM rashes come up and has taken abx for 4 months at a time to get rid of the Lyme in him. The EM rash is one that comes up after the initial bite(few weeks or months later). You may or may not see one but he was lucky to get one. He has a very strong immune system so he has not gotten sick. Whose to say whether I got it from him 7 years ago? There is NO chance he could have gotten it from me. You see you never know so do not worry about that. Worry about your health and getting better. Try to stay positive and pray. Know these wonderful Lymenet people care so much about you and I do. You will make it through this I promise. Love, Lo XX Posts: 187 | From Sacramento, California | Registered: Apr 2001
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posted
Wow, Lo, what a beautiful response. You said it perfectly.
My new symptom is depression. This past week has been rough. I have never been one to cry, but this week I have been very emotional.
One minute I'm fine and happy and then all of a sudden, a bout of sadness hits me and I just want to cry my eyes out.
It is very lonely. It's just me and my 2 young kids. Unfortunately, I'm dealing with so many issues right now, so I understand the heartache you are referring to.
Take care and hang in there, kiddo.
Cinder Posts: 60 | From USA | Registered: Nov 2005
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
jaykay-you've come to the right place. you got some great posts already. i am in northern new england now, but for 20 years i was in ny state-dutchess cty. there are quite a few really good support groups there. you might want to look into that. if you can't find them, private message me and i will try to find an old address book with their numbers.
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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posted
Thanks everyone. I'm so grateful for your replies! I will read them over and over again to make me feel better!!! I may have questions, I will email/post later. SO grateful. -Jennifer
Posts: 67 | From New York | Registered: Dec 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
JayKay,
Don't be alone with this. SHARE. Trust that the people who love and care about you will understand. Make sure to educate them about Lyme disease since most people know next to nothing about it (other than the bad press they've heard).
Use some of our excellent medical links (on the left) and print off some articles from the Newbie Links. That way people will understand what you're experiencing as it's hard for some people to fathom when you LOOK okay (i.e., you're not bleeding from a giant gash or something!!!).
And post often...!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Loribelle
Frequent Contributor (1K+ posts)
Member # 6293
posted
Lots of friends here....
When I was really sick I was on here all the time, reading and researching. Lots of kind support in General. Some fun in OT. Good info and sharing in medical too.
But after so much reading about it I got so depressed. I had to add some things to my life that had nothing to do with Lyme. That helped me...
Hope you are feeling stronger and better in all ways very soon Posts: 1149 | From southeast iowa | Registered: Sep 2004
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lyme is a very isolating illness. a situation made worse because the medical establishment refuses to acknowledge its seriousness! and that's because the only thing they really care about are the investment, insurance, and real estate companies who help line the steerite's pockets in return for the invaluable service they perform by lying to the american public about the nature of the disease and its origins!
Personally, I haven't had a date in 4 years! I spend most of my time when I'm out of bed wandering around the woods by myself talking to animals! In fact this week I haven't spoken to a single human being outside of cursory interactions at cash registers!
Thanks a lot Allen!
Posts: 523 | From Stillwater,OK,USA | Registered: Sep 2004
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bettyg
Unregistered
posted
Jennifer, welcome to the lyme board. You won't feel lonely here, but we are walking in your lyme shoes!
As suggested, please print off the 8+ pages TREEPATROL'S NEWBIE LINKS. Read important ones to you 1st. Check them off as you read the months of readings, and tree constantly updates.
Print off Dr. B's guidelines, 40 pages, as he is our LLMD, lyme literate MD, who is our CHRONIC LYME EXPERT.
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