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If my test comes back negative should I still get Lyme treatment?

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Posted 11/14/2014 6:58 PM (GMT 0)
I'm worrying about things that are out of my control and haven't happened so bear with me.

If my test results are positive easy decision. If they are negative and I get a clinical diagnoses I'm going to wonder if that's really the issue. Simple enough right? Haha...

I don't want to pour expensive treatments into my body if they might not ever make me feel better. I'm stressed and confused and ahhhh!!!! Going crazy..
Posted 11/14/2014 8:11 PM (GMT 0)
You are just gonna have to wait till your tests are all in.I am waiting for mine as well,it was driving me insane.But what can we do?We know that it could be a clinical finding.If you feel comfortable about talking to me I would love to hear about you before lyme
Posted 11/14/2014 8:39 PM (GMT 0)
IHL - don't put too much into the tests. If your LLMD diagnoses you with Lyme disease, I would accept it.
Often by the time we get diagnosed, we have been to many docs and have had tests/scans/MRs and have no answer that makes sense... Or in my case no diagnosis that encompassed all symptoms. I was told peri menopause for my anxiety, vibrations and hot flashes.... Frozen shoulder for my nerve pain on upper left side, but no answers for the muscle and joint pain, the sudden onset sleep apnea, the chills/shivers, the tailbone pain, the off balance, the twitches, the weakness...etc

Do I still question it? Yes, when I'm having a bad day... but nothing else is showing up - even for an autoimmune disease there shod be something showing in blood work - but no antibodies for anything else... Except lyme
Posted 11/14/2014 9:00 PM (GMT 0)
Cairn1 before I got sick I was very active. Hiking and riding my bike 5 miles everyday. Working out and doing yoga everyday. I could drive and see. I was just a normal young mother. I could do whatever I wanted.

Whatever is wrong with me waxes and wanes. I've had times where I felt completely normal and wondered if I was ever sick in the first place. Then it would wear off and I'd be so sick I couldn't get to the bathroom and would pee my pants or puke down my shirt.

This has made me question my sanity. It has stripped me of my self confidence. I'm a shell compared to what I'm like when I feel well. It's horrible.

Girlie I'm trying not to. I just want to make informed decisions about my health care. I'm worried I'm not capable of making the right decisions for myself.

I did test borderline positive for lupus. I have all the symptoms but it doesn't cover everything. I have more symptoms than just that.. I'm confused. And sad. And scared.

This is like a nightmare that I can't wake up from.
Posted 11/14/2014 9:09 PM (GMT 0)
I've seen probably 20 doctors. Specialists and whatever. Only treating symptoms. I do probably have Lyme for God's sake I had an em rash. I don't know why I keep forgetting that.
Posted 11/14/2014 9:18 PM (GMT 0)
IHL...I am with you 100% about questioning your sanity! I like you was healthy and active and am a young mother to almost 3 yr old twins. I am so wrapped up in figuring out what is wrong with me I can't think about anything else. I am scared out of my mind. My kids are always telling me not to cry. I hate it I hate it I hate it! I wish I could just go back to my old self.
Posted 11/14/2014 9:48 PM (GMT 0)
IHL- if you've had the bulls eye rash, you have Lyme. It's the only thing that produces that rash and it's the skin form of the infection. So no, there's no doubt that you have Lyme, it just a matter of you getting the treatments you need now.
Posted 11/14/2014 11:19 PM (GMT 0)
Totally. I'm just being a total stinker today. Really down. I guess that's part of this disease.
Posted 11/15/2014 1:49 AM (GMT 0)
Ditto! ...what Girlie and Trav said!

Quoting: "If your LLMD diagnoses you with Lyme disease, I would accept it."

& the Rash=very diagnostic of lyme disease


Keep your head up IHL, at least your on the right path to getting well! You wouldnt be *here in this forum with us if you werent.... :)


xx's-Courtney
Posted 11/15/2014 5:48 AM (GMT 0)
Thank you guys. I don't know why I was even second guessing myself.. I mean, DUH! I had the rash! I have pictures my doctor took pictures it's on record. I just forget. My memories don't seem real sometimes.

My brain shuts off and that's when I feel overwhelmed. When I can't access the information I need to make a simple sandwich for my son, I shouldn't expect myself to know all the answers to this disease.. that's just not fair. I wouldn't be happy if someone else was treating me like that, so I need to get better at paying attention and catching myself doing it.

I need more gentleness and kindness. It's my responsibility to create that for myself. And I need to shift my focus. I need to give myself the gift of acceptance and understanding. I want other people to get it so bad when I don't give myself that same respect.

If I could master that I wouldn't need to worry. My family wouldn't let anyone hurt me. And I trust them to know when to draw the line. My work is over, I found the doctor I need. And it's only 2 hours away thank god. And he takes my insurance. And he gave me a hug when I was crying after the sinus swab.

No one else has even attempted to help me. And this guy is willing to put his medical license on the line to do the right thing. I think that's someone worth trusting. He is ilads trained. The reason he's so busy is because he helps so many people get their lives back.

I'm sure I won't feel this secure all the time. I'm sure I'm going to come back on here and whine and worry. And that's OK too. Because you all will be here to remind me of our collective truth. That we really are THIS sick, that everything will be ok, and we won't feel this bad forever.

Thanks for being here to share in my journey. Thank you for listening and helping me and answering the same question 600 times over. Thanks for your precious little energy :)
Posted 11/15/2014 6:43 AM (GMT 0)
IHL-You GOT IT my dear! At least your ARE on the right path now. No one said the path may be easy or short but your on it is whats important. It IS ABSOLUTELY AWESOME that your doctor is compassionate AND he takes your insurance! The accepting of insurance is becoming more and more rare with lyme doc's due to the controversy with treating lyme. My doc used to take insurance before I got to him but no longer does. Its $500 first visit then $250 there after...so your def fortunate with that.


..and your right, I look at it as "riding the waves". Like you said "you wont feel this secure all the time" and its true. Sometimes I have a positive outlook and know Im on the right track now but then a 'wave' will come and Ill get depressed about how this illness has changed my life and taken from me. I mentioned in a post earlier, Im constantly re-directing my thoughts. There was a time where it was very scary and I dont want to go back there again. Actually it was in the past month of April...around the time I joined this forum ;-)


I read somewhere on another bloggers website of someone who shared their success & beat the illness "made it their job" to get well. Thats how I look at it now. Most of us can no longer work due to being sick, but we do have a "job" to do...and thats getting well. So now all throughout the day, I think to myself:
...what meds do I have to take and what time
....what supplements/herbs should I take
.....how can I make myself move around to keep things from locking up and get abx/supplements delivered in the body better
....detoxing!
...am I adequately hydrating
...arming myself with knowledge and knowing my enemy well so I can beat him with all I have
...making sure I dont drive people nuts w/ "speaking lyme language" (lol but true-I do have to catch myself), thats what venting with you guys is for ;-)! Thankfully ya'll speak lyme!



However-I also at the same time, make sure I take breaks from all things lyme and try to incorporate some pleasurable pastime things. Whether its playing some games on pc, online shopping a bit(love finding deals on ebay!), playing with my pup, chatting with my sisters, cleaning has always been therapeutic for me(if I have the energy), listening to Pandora radio(even danced a few times when had a few good days! dancing is so good for you). Oh and making sure I dont stay in pajama's every day of the week! Just some idea's of what I do.

The important thing is to have a plan of eradication. You have started it hun.. and that IS key.



xx's-Courtney
Posted 11/15/2014 8:23 AM (GMT 0)

Girlie said...
IHL - don't put too much into the tests. If your LLMD diagnoses you with Lyme disease, I would accept it.
Often by the time we get diagnosed, we have been to many docs and have had tests/scans/MRs and have no answer that makes sense... Or in my case no diagnosis that encompassed all symptoms. I was told peri menopause for my anxiety, vibrations and hot flashes.... Frozen shoulder for my nerve pain on upper left side, but no answers for the muscle and joint pain, the sudden onset sleep apnea, the chills/shivers, the tailbone pain, the off balance, the twitches, the weakness...etc

Do I still question it? Yes, when I'm having a bad day... but nothing else is showing up - even for an autoimmune disease there shod be something showing in blood work - but no antibodies for anything else... Except lyme

sorry to jump in, by tailbone pain you mean pain when you would lay down on hard surface?
Posted 11/15/2014 4:46 PM (GMT 0)
Thanks so much orchid rain. I'm gonna kick this thing one day at a time!
Posted 11/15/2014 9:58 PM (GMT 0)
Your welcome hun~~~"One day at a time" sounds good to me IHL~~~


xx's-Courtney
Posted 11/16/2014 9:11 PM (GMT 0)

interpro said...

sorry to jump in, by tailbone pain you mean pain when you would lay down on hard surface?

Interpro, I don't believe that they saw your question. Please feel free to start a new thread if necessary.

I know for me, the tail bone pain came and went no matter what I was wearing, sitting or laying on, or activities that I was involved with. It was more closely tied to when my sciatica would strike than anything, but that was also closely tied to just nervous system issues, due to it all being part of Neuro Lyme/Bart.
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