Lyme Disease Support Group

so far my family is trying to understand my lyme disease. But my husband is starting to think that depression is the reason I am always laying around. That I should stop looking on the internet for possible future symptoms, stop blaming everything on the lyme and just do what the doctor says and i will be fine.

Bless him, her tried to give me my own positive thinking speel.. but this makes me feel like I'm looking for bad things to happen.

I understand that this disease has so many random symptoms it is hard to grasp. How do i go forward speaking to loved ones about this disease?

A

m I crazy for searching the web for all possible informaction every free moment I get?

Hi Kim, I think it is very hard for anyone to understand how ill you are or can become because they cannot feel what you are feeling. You may look okay to them, so

everyone thinks you are fine. Keep reading, if you do not get it under control, the infections will get so much worse, then in a few years time, you will start to

show symptoms on the outside (looking ill). I just joined MD maybe 2 years ago. I am always searching for new treatments etc.

I went undiagnosed for at least 20 yrs, and am very sick now. YOU have to be your own advocate.

I went to so many doctors in the beginning, every I.D. doc in the area, they would not even look at me when I mentioned lyme. As a matter of fact one doc at HUP was

the rudest wacko I came across.. So I found out they are being paid not to

treat us. YOu have to have a good lyme lit. doc. I wish you all the best. and hope you stay on the right track. P.S. You know my own Mother was calling me a hypochrondriac to my siblings, boy did that hurt. Do you have a good doctor? js

jsbrighteyes- I do have a llmd. infact I went to see her bc I was always getting upperrespitory & sinus infections. She found that i have a immune problem causing that. As I was finishing my 1st appointment she asked me if I go camping ect and decided to test for the lyme.

I was very lucky that she caught it! not sure how long I've had it. the only time I had a tick on me was as a kid. but I did get a strange rash last summer and recently moved to an area with aton of deer.

How are you? are you on medication? this is new to me, so i don't know what they do for people who have had it that long.

your advice is so helpful and i would love to hear more of ur story.

god bless

@ Kim, Show your husband a youtube segment, such as this one http://youtu.be/bbo1o4uW_iM

Also you may have him watch with you the documentary of "Under Our Skin".

The full version is available for viewing Here http://www.youtube.com/watch?v=2JgR_Jfbhv8

You and him will learn a lot from this documentary, it is very informing and very true. It should definitely help him understand.

will do ten..i have been wanting to watch under my skin.

i might be in denial which is why I haven't watched it yet

thanks!

Not all uf us get the usual bulls eye,,,alot don't even know or remember a tick on our body..

My husband made me promissed (when all this started in AUgust) that I would not go on the web and concentrate all my hours on searching on line,,,because he thought I did not have Lyme,,,,

I did slow down a bit on my research on line,,but have to admit I was getting a little opssesed with the reseach and the hours I was spending on line...

It turns out I did lear alot about lymes,,but some of the things I learn from the net are so general that it was starting to confuse me... One thing is,,,,Tick bites- bulls eye,,,not necessarilly....

Anyway, I think my husband was a little on denial,, but when I showed him my test results he did not look sorpriced at the results,,,he acctually congratulated me for taking a handle on the issue and finding out what was really going on....

Anyway from my expereince,,the research is vital,,,but I don't thik getting upssed on the issue is healthy for us,,,we read soo many sad stories about Lyme, at times I

was 'getting really depressed over what I was reading,,thinking I was doomed!,,I've been on my LLMD treatment for 1 month,,and I can honestley say I'am better then one and two months ago.

,,,,I'm also aware I have a long journey,,,I'm willing to work on the journey with a possitive attitude,,we need to BELIEVE we are going to get better,, other wise our mind

does not help us,,,,we are what we think, eat and breath...

Best of luck!

Post edited by: Lavida, at: 12/03/2012 05:42 PM

Since there are so few people that actually know and understand Lyme Disease, I believe that it is important to research in order to know what to expect and how to get a handle on this disease.

I found that reading and learning helped me in every aspect of my treatment. It is also reassuring to be able to compare your symptoms with those of others in order to understand that they are all pretty classic symptoms of Lyme.

What I found is that I had symptoms of many others, and of how symptoms vary from person to person.

It is always helpful to have the support of a group of individuals who are experiencing the same day to day struggles that you are - physically, mentally and emotionally.

There will always be people in your life with different levels of skepticism. Lyme Disease is not a very publicized disease, and the fact that so many doctors don't even support it makes it even tougher.

Try to stay positive and know that there are many other people going through this, too!

watched under our skin last night and boy that was scary!!! watched it alone bc my husband is in denial, I guess. what are the chances I get that sick? I am sick now but not that bad. okay maybe I'm like the girl at the end who doesn't look sock but is.

I am a fitness coach and i had to give up some classes.My husband is concerned about the money we are losing and telling me to get a new job.

My question is, is that possible ? how do I start a new job when I'm 2& a half months into treatment?

My question is kimhouston, do you think you will be capable of working? Lyme has kicked my butt so hard that I had to put two over 40 hour a week careers on hold along with the inability to drive sinceOctober 2009 due to passing out. I was always the one that went to work sick, even if I was in pain. I do have a really high tolerance for it, but definitely not this. I can't stress to you enough to have a LLMD for extended treatment.I'm truly sorry your husband doesn't understand Lyme but I can relate as I have a spouse, brother and mother that also have doubts even though I have a positive Western Blot from Igenex. Thoughts and prayers for you and a wish for better health!

Post edited by: mlccc2, at: 12/05/2012 04:38 AM

KimHouston, Time to turn the table...He's worried about income? Ok, good he can go get an extra job... He's well enough...right? He' not sick with Lyme or whatever....right?

When I was in others so called "circle" when I could drink and BS with them,it was all "cool"

Now out of so many.....so many.... Only two check and see if I'm cool...ask me how I am doing, ask to explain to them how to protect themselves and familly....

I'm truely sorry your husband has choosen his path, he does not know how blind and dumb he is being...

Your family is going to be where the support is. Perhaps it's right here!?

Look, this whole thing boils down to YOU...and you know what, call it what they want...It's time for YOU to be selfish about your own health!!

May you do well in your treatment, and anytime ya need support or got a question ya need help with....work with those who work with YOU

Do you know why Lyme is spelled that way? See the ME at the end? It is all about you....keep at it!

my best to you,

WLK