Lyme Disease Support Group

Its true. I am a bit down. I just feel like I need some people who understand what it is like to have this disease. I am frustrated at being 25 and living with this. I am recently married and I worry about my life with my husband not being as fulling as i would like. I feel like he deserves someone as full of life as he is but I am tired, and in pain. He is amazingly understanding but i still feel like i wont be able to live the life i want to with him. i am worried about having kids...i am worried about everything. i want to be well. what can I do? i already eat well, take vitamins, herbs, and have been on long term antibiotics. My body cant take the antibiotics and the one thing i feel might work(IV antibiotics) I cant afford. I dont know what to do. And also, I want to eat some ice cream and drink a beer, normal things for someone my age and i cant. grrrrr....sometimes I am at peace with this disease and other times i hate it and myself for having it. any suggestions?

Join the club! LOL

Ya know, if he's really understanding, I'd honestly take what I could get. It's really hard for me with my hubby. He really doesn't get me, he's hardly been sick a day in his life, and he can't stand the money we spend on my meds, my supplements, and he has a hard time with all the things I CAN'T do. He teases me about having tests run, and he says we should test for everything under the sun, "just so we don't miss something."

Like you, I worry about having kids. And yet, I mentor others, and I tell them all the time to stop worrying about the things they can't control. If only I'd just take a little bit of my own advice, eh? I worry about everything, too! But, as you say, what CAN we do? We can take care of ourselves and do the things that are within our power to control, and let the rest of it fall into line.

I guess those are my suggestions...those along with educating yourself to the best of your ability.

*hugs* and good luck with everything. You did come to the right place, because here you will find a TON of great resources and some really wonderful people!

Jen

Hang in there petulalee . You can get better from this disease and have your life back, you really can. I did . Sure, it's normal to have down days....believe me, I had plenty of them. However, I want you to know that people can put this disease to rest and live a normal life. You can't give up on finding a treatment that works for you. So, you came to the right place.....we all know exactly how you feel. Please, keep reading and researching and don't give up on your dreams to live a normal life.....you can conquer this, you really can. I was under the care of a physician in the South that 'prescribed' an individualized treatment plan. It worked. In a matter of six to eight months , I began to really feel like my old crazy self. You can get better,too. Please feel free to ask any questions, any time .

Peace,

connie

Your husband sounds very understanding, just be open with him at all times on how you feel, when you are having a bad day, let him know...When you are having a "Good" day, go for it and have as much fun as you can...

Being sick is no fun, but you will get well...Please believe that...It will take time, but you will get there...

I also have a very understanding husband, at times I'm sure he wishes I did not have lyme, so I try hard on my good days (which is more then bad) to have fun with him and not speak of lyme...But in his heart of heart he knows...

You will be AOK, I was at deaths door last september, and today I'm 99.9% better as you will be one day also...

Like you I can't take any abx's allergic to 99.9% of them, I tried them for a few months until my body said "no-more" I beleive the body can fight this lyme, mine is...

Julie

Hang in there.

You have to look at the different treatment options. Just make sure that in your regimine of eating well, the Gluten is eliminated. Which means if you are eating whole wheat - stop. switch to the alternatives. there are some really great rice options out there and many grocery stores are carrying now.

But hang in there - there is a lot of info here, and there are some who have found their way back. Read Read Read. Educate yourself.

Anyway, you are in a good place here.

Good luck

Christine

Hi all, 'm new here too and think it's a good topic to bring up. This disease is very depressing. It's a difficult beast to conquer and many don't understand what we're going through. I recently was told by my doc that he wants to stop the Vanco IV after 5 weeks since I haven't shown any improvement with it. I have been very emotional ever since. My Lyme tests from Igenex showed Lyme BIG time, both Igg and IGm, but so far co-infections have been negative. So I'm scared because he is Lyme literate but seems unhappy with all we;ve tried not helping yet. Another issue that's had me an emotional wreak is that it's time to admit i need a wheelchait. I can't walk for any lenght of time with out lots of pain that the meds can't even help alleviate. My mom thinks the whole thing is crazy and actually told me if i get a wheelchair she won't be seen with me. I can't teach my 5 year old to ride a bike, i can't shop for groceries.... all of it has been getting harder all along but I kept tinking soon I'd get better. I also wrestle with my own feelings about a wheelchair, the idea makes me feel weak, helpless, old, feeble and people will literallly be looking down at me! So, how do I admit defeat? How do I get my family and friends to understand that it may not be visible or very well studied and understood, but it is a real diseasse and it is honestly making my life a depressing and overwhelming painful fatigue ridden battle? Thanks for listening, I appreciate any feedback and my heart goes out to all of you warriors in the Lyme battle- we're on the front lines whether we like it or not! I've cried a lot this week so maybe the one good thing of it was that my desperation led me here!

~~Janet

Hi Janet and welcome to the group......I am so very sorry to hear how sick you are right now. Just please don't give up finding a cure that's right for you. There is hope all around you. I am recovered and symptom free. There are a few others on this site who are feeling much better,too. I was a 'blob' for many years and my oldest daughter didn't learn to ride a bike until she was 7 or 8.....I was too tired to teach them. I was in survival mode for many years.

You have come to the right place for understanding. We all know the reality of this disease. This group really validated all of my symptoms that I minimized for so many years.

Hang in there and feel free to ask any questions or pm me with any special concerns.

Connie

Hey,

I can relate to how you're feeling. I'm 30, I've had Lyme for 3 years now (treated for 5 months so far), and I got married exactly one month after the tick bite. I didn't get very sick until a couple months later, but starting a marriage isn't easy without chronic illness, let alone with something like this. And of course it caught my huband off guard - he thought he was marrying a healthy woman and great times were ahead. The first year of dealing with everything was difficult...he wasn't used to me being sick and had to deal with that as well as take care of the household, laundy, dishes, pets, etc. I also lost my job due to the illness.

I go through horrible moments every so often where I start to hate myself for how 'horrible of a wife' I am right now. And when the thoughts creep in it's hard to convince myself they're not true. It's also hard wanting so badly to start a family, and all of my friends already have children or are constantly getting pregnant. It's of course out of the question now with the disease active and the treatment too harsh. I'm fearful that it may possibly not even be a possibility anymore, and that scares me.

If you ever need someone to talk to who can relate, feel free to contact me! It's a hard thing for others to understand. And if your new husband and marriage are anything like mine, you'll find ways to use it to make your marriage stronger!

Tiffany

Tiffany & Janet:

You are so right, its hard for others to understand.

I also started out my marriage when I got lyme, I was planning my wedding when I was bitten and got sick, I had to get married being so sick it was awful.

What I have found works, at least for me. I am very open with Jim regarding how I feel from day to day. I used to say "I'm sorry" all the time, then I stopped as this was not my FAULT, I did not ask for this, it was given to me (what a present). In turn he is very understanding, when I feel good I run with it, when I'm having a bad day, well he pretty much knows it. He has had to take over many rolls in our household, but when we got married they did say "For better or worse" so I'm hoping I got the "Worse out of the way for awhile".

I also keep a journal, at times Jim will read it, and understands more of what I have gone through. I think that has also helped our marraige due to me being sick. (I also have other health problems besides lyme).

Like Connie I'm doing a lot better 13 months later, lyme takes time and takes a lot from us.

You can get well. I pray for your recovery.

Julie

p.s. Tiffany, pm Clayton she has lyme and is having a baby she might have some input regarding that.