I am seeking a LLMD,as I believe I may have Lyme disease and the dr's here do a very generic test and it came up negative,but I've heard that you can get a "false negative"? When it's really positive?
I was bit about 4 or 5 years ago,my memory isn't so great. But I would not have even seen it as it was near my cesarean scar,and my husband noticed it when I was getting in the shower (hours later).
Ever since then,my migraines have gotten worse (used to get one or two a month,now they are almost daily),I have many stomach issues (heartburn,nausea,stomach cramps-daily),and my joints hurt,I am tired all the time,and I almost failed my last term of college,as I couldn't remember a paragraph as soon as I read it.
The dr's here keep saying I have osteoarthritis,GERD,insomnia,depression,etc,etc. But all they do is give me more pills! Which makes me sicker and sicker.
I live just south of Eugene,but we are looking for a home/property of our own. Anywhere in Oregon. If I find a good Dr.,that listens,and will help me feel like a human again,I would travel there and even move closer. I am THAT desperate!
I am only 43,and I feel like an 80 yr old on death's door. I am so tired and upset and sick,and I have a paraplegic son,and a disabled hubby that need me!
I have been attempting to get my degree to be a teacher and I am a few classes away,but I can not continue on! I had to drop out! I had dreams of traveling and hiking the PCT,but I have given up.
I have tried supplements for various things,and tried to exercise,and eat healthy,and do smoothies and protein shakes...I don't know what else to do! HELP ME! I'm at wit's end! All I wanna do is stay in bed and cry!
(breaking up the post for easier reading for many here)
[ 07-05-2018, 04:12 PM: Message edited by: Robin123 ]
Posted by Bartenderbonnie (Member # 49177) on :
I will send you a private message. Click on the 'my profile' located in the middle of lymenet's homepage to view your p.m.
Posted by Lymetoo (Member # 743) on :
message sent
Posted by Robin123 (Member # 9197) on :
Well, you're a trouper and you've come to the right place - many of us have gone through what you've gone through! We will help you here!! And with treatment, we start to do better.
People don't really see stories in Seeking. I suggest you retell your story in Medical Questions or General Support and we will collectively respond to you there!
Also, you need to break your post up into a couple lines at a time like I just did above for many here to be able to read it.
You can also start getting educated here. At the top of Medical Questions, there's a sticky called Important Information about Lyme and co-infections - lots of info there to keep you busy!
We also have a Search function at the top of the page where you can type in any word or phrase, click on Medical Questions, and archived discussions will come up that you can read through. Just know that we're all different in what we've got, how we test, and how we respond to treatments. The trick is to find out what works for each of us.
Posted by Keebler (Member # 12673) on :
- First: You say you were bitten in the past. If you had a bulls eye rash, that is a clear sign of lyme. You can find more about that in the links.
So sorry to hear of what you are dealing with. You are correct to seek out an experienced lyme literate doctor for a proper assessment and it could very likely lead to lyme and other tick borne diseases.
Oregon is a particularly hostile state in terms of what the state medical board does to hamper any MD who wants to do better regarding lyme. There may be a couple MDs who could treat a minimum dose up front for a brand new case that hits them over the head, so to speak.
But no MD who is in good graces with the Oregon Medical Board is going to know what they need to know -- or have the "permission" to address chronic infection, especially that was not even diagnosed or treated properly in the first place.
There is an excellent LL ND in Eugene. ND = naturopathic doctor.
There are no LL MDs in Oregon, although a very few might be able to help in some ways, it's the LL NDs who are ILADS trained are the best bet and the person I'll send detail for is superb from what I hear.
There are also a couple LL NDs in the Portland area.
Be sure to sign in so you can see your PMs but it will take me just a bit to collect my notes. -
[ 07-05-2018, 05:03 PM: Message edited by: Keebler ]
Posted by Robin123 (Member # 9197) on :
Thanks, Keebler!
Posted by Keebler (Member # 12673) on :
- Sent you a PM with one name.
Be sure to connect with these groups they are MUCH more up to date than I regarding all your options. Brace yourself, though, that any insurance coverage you may have likely won't cover treatment at this state, nor testing.
But find out about any kinds of testing financial help, etc.
Reasons for False Negative (Seronegative) Test Results in Lyme Disease -
[ 07-06-2018, 05:28 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
- You mention that you are exercising, etc. Do not attempt any aerobic exercise right now. If you have lyme, it can cause more harm than good. Move, of course, just not too fast or too long at any one time.
Non-aerobic . .. like not too fast walking (strolling), tai chi, light strengthening with weights or gentle pilates, yoga, etc. maybe but never to the point where it might exhaust you more than it helps.
No hot baths, either. Cozy warm but not hot. Try to stay cool as the weather is now warming up. This matters.
If you have other questions, be sure to post in either General or Medical forums.
there is hope, not matter how many road blocks you may face along even this new hopeful avenue. Keep your dreams yet you may need to alter the time line. If anyway possible, ask for help with your family. Your body needs the physical support right now. Take care
College: See about getting an advocate & special accommodation for disabled. This matters tremendously. -
[ 07-05-2018, 05:55 PM: Message edited by: Keebler ]
Posted by Keebler (Member # 12673) on :
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