I came online for support and info, and I am now overwhelmed after looking at your posts. So many things to think about, look like!!
I didn't see a place to introduce yourself, so I will do it here:
I was dx with fibro 10+ years ago (after a very bad accident.) Many muscle aches, pains, cramping, fatigue and miserablenes later, did 1.5 years of physical therapy. My pain levels went way down, and just when I was about to push off into seriously thinking about getting batter and having a life, and being able to go back to work someday, malasie and fatigue just plagued me! Found out I had mononucleosis, and have had it for a longg time now, wihtout it ever going into an inactive or epsteing barr status.
I was also diagnosed with Hashimotos disease, when we did a little shallow looking into adrenals/thyroid stuff. My t3/T4 were fine, but a deeper test showed I had anitbodies to my own thyroid. Found that out last year.
Soooo... after 2 years of chronic mono (the super bug) my dr suggested a lyme test. I did not test positive, but she did a cd57 test and bingo, said that I have it.
I have had accompanying depression, anxiety, headaches, fever for 3 months now, baker cysts that developped 3-4 years ago, and when I googled lyme, I actually cried while reading the symptoms. My doctor told me to google it and I would see myself. They could not understand why I was not getting better (neither can my friends when I say I can't go out "I have a fever."
One person said disbelievingly, "haven't you had mono for 2 years now?" and I din't know what to say. Yes, I nkow it sounds strange, bot even the doc understands it, but let me tell you I feel tired all the time. She told me that I am a flake and unreliable. We are no longer buds, but I have other friends who have the same questions.
I am feeling like the odd man out. When I was younger I was so positive and physically fit, on the go a lot. I do not recognize myself, and find it even harder to explain to others what I myslef do not understand.
I have a dr appt in another week, when my docs will have a treatment plan ready for me. I do not remember a tick bite, but camped and played in areas all my life that had them. So no knowing how long, but I have had increasing memory problems, and it may be 10-20 years ago that I got it. I hsve no idea what they are going to suggest, but wonder if it is antibiotics and if it is too late for me? It has been one week since I found out and the not knowing is killing me!!! I've always been like Ty Pennington, "let's do it!!!" (tho not as hyperactive, lol.)
Thanks for listenig. please say hello.
Posts: 4 | From US | Registered: Jun 2011
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posted
And I thought I was being cogent... Guess I should have "previewed post"... Sorry y'all...I am very tired and tried to encapsulate 15 years of fatigue and pain in a short post, and didn't do very well.
I AM a terrible typist, tho. Ima go get me some food.
Posts: 4 | From US | Registered: Jun 2011
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Hi and WELCOME!!
Your story sounds like so many others here. I'm so glad that you found us. You can learn a lot here.
You will need to do your own research. I would recommend that you read as much as possible.
I don't think it's ever too late to get better. You just have to find what works for you.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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posted
Saying hello and welcome! Sounds like you've just found out, so have patience with the process - this is a marathon, not a sprint experience -
I also had a fibro history, but it sounds like the difference between you and me is that you never saw a tick, and I did - I had a known tick bite in my foot, it was identified as such by the health clinic that removed it a week later, and then I forgot about it.
1st symptoms started 10 weeks later with sore neck and shoulders, a year later I had a stiff neck, and 18 months after the bite, I had pain from head to toe that was labelled fibrocitis, later changed to fibromyalgia.
I mention all this to let you know it's very real what a tick can do - a minority of us get to actually see the tick or ticks.
I found an antibiotic that worked right away for me - it was clindamycin 150mg - within a week of taking it around the clock, my fibromyalgia pain was at zero, and this after 25 years of symptoms! So, not too late!
We're all different, so we have to find out which antibiotics are going to best treat us - many do doxycycline.
Additionally, we're supposed to detox and fortify the body. So this is a study about how all that is done. You can google for the Burrascano 2008 guidelines to learn some about supplements, etc.
I personally like anti-inflammatory supplements, like mangosteen juice, noni juice, grapeseed extract capsules, and I'm sure everyone here has their favorites.
I like trying one thing at a time to see what it's going to do. And start slowly with anything so as not to be overwhelmed by it.
Your LLMD may do some bloodtests which will show blood chemistry and help guide your therapy.
And just study here. I call it going to Lyme school!
Support groups are also good, if you've got any near you. You can check at the left here, under Support Groups - click on United States and your state.
I don't think you have to explain anything to anyone right now, other than what you know about having Lyme, mono, hashimoto's -
just focus on your own learning, and in time, you'll be able to give people a pretty good run-down on exactly what you're dealing with.
And beyond that, it's good to have people in your life who are willing to make the effort to understand. That's where support groups can come in handy. And boards like this one!
Posts: 13117 | From San Francisco | Registered: May 2006
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posted
Hi all, thanks for your response. I am very happy taht I found this site. I did email the local group and am waiting to hear back about meeting times.
I have to ask what is a LLMD? and Herx?
Thanks Robin! I am so excited to hear antibiotics helped you after 25 years... gives me hope!! My doc does both natural and western medicine, and mentioned something about detoxing after treatment. Not sure what either entails yet.
I found that Burrascano guy the other day and downloaded the pdf for the latest guidelines- all 35 page sor so. lol. My brain began to boggle by the time I got to the treatment section.
Thanks for getting back to me, AND for letting me know that it is a long term thing. I do better at the dash- ran both track and cross country, and I definitely am like a bull dozer when it comes to certain things I want to get done. SLow and steady wins the race and knowing my limits and resting are defintiely lessons I need to learn.
Posts: 4 | From US | Registered: Jun 2011
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