Coming onto this site, I really had hope that I might have figured out what was going on with my body. Because SO many of my symptoms sounded like what everyone here is dealing with.
My PC doctor finally agreed to do the lyme titer test. It came back negative.
I am now very depressed again because I didn't get an answer to whats going on.
I have an appointment with a LLMD in 2 months. Should I keep that appointment? Are lyme titers reliable tests?
Ugh I'm so down again Posted by Judie (Member # 38323) on :
Lyme tests are notoriously unreliable.
Even Virginia just passed a bill that the doctor must inform a patient that a negative Lyme doesn't mean you don't have Lyme.
Keep that appointment!
Posted by Nancy2 (Member # 95) on :
Be sure to keep your appointment with LLMD. They should be able to rule Lyme in or out.
Posted by lpkayak (Member # 5230) on :
Also there are lifestyle things to do to help and even herbal things that might kill infection or start to kill infection but you have to be careful of that because when you get to the doctor it will be confusing
Posted by steve1906 (Member # 16206) on :
ookearaoo12, as you can see above, Lyme test are very unreliable!!!
Maybe you can share some of your other symptoms with us, we may be able to give you some suggestion to feel better. I know your appointment isn't till two months, that's a long time.
The symptoms we're aware of are: (Heart problems & Eye floaters) Which are very common with Lyme & co's.
Posted by ookearaoo12 (Member # 41442) on :
I've been keeping track of all my symptoms..
Chest pain/pressure Headaches (sometimes ice pick pain in temple) Achy wrists, fingers, and elbows Jaw, teeth, and ear pain Necking cracks everytime I move it. Also, other joints crack as well Hair loss in the front of my head Memory loss
Posted by ookearaoo12 (Member # 41442) on :
Also, eye twitches and head twitches
Posted by steve1906 (Member # 16206) on :
I'm sure you know by now, these are all common symptoms, when did you start getting sick?
If you Haven’t already, you should read the post at the top of (Medical questions) called (Dr B's 2008 Guidelines for treatment). It's always a good please to start.
I'm also from Massachusetts, we're very close to the top of the list for Lyme disease cases.
By the way, your area is one that is on the increase for ticks & Lyme.
Posted by ookearaoo12 (Member # 41442) on :
I started to feel chest pain about a month ago and everything has gone downhill from there.
It's driving me crazy knowing I can't get to a LLMD until the end of September.
Posted by Catgirl (Member # 31149) on :
Ook, I and probably most of us here have had many of your symptoms.
I remember feeling panicked that I couldn't start treating this disease soon enough. And the tests are maybe 50% accurate, if that. That's a huge false negative rate. So your negative test means zero in lyme land. Anyone with lyme should find a lyme literate specialist, one who is ILADS trained (International Lyme and Associated Diseases Society). They are cutting edge when it comes to lyme.
The ID docs are WAY behind, but they can't help it, that is how they have been trained. They've also been trained to blow off anyone who thinks they have lyme symptoms as something that is "in their head." This is ignorance, at best.
IMO, you can't live in the NE without getting this bug. It's everywhere here. I originally got bit in CA, so it's all over. I went decades without getting diagnosed. The end of September is really not bad at all. You'll be fine. In the interim, you can read Buhner's book, Healing Lyme (great book). There are some basic herbs you can take (in the book, and also planet thrive has info too). http://planetthrive.com/
There is also a salt/c protocol (book) for lyme. I'm sorry that I didn't try these two protocols first, along with parasite treatment. Parasites are at the heart of lyme, IMO. It's a little hard even for people who've had and treated lyme to grasp sometimes, but some of the best docs are finally starting to get it. There is a thread on this blog called THE PARASITE WARRIOR'S THREAD that is full of info.
Posted by Catgirl (Member # 31149) on :
Ook, you can always ask to be put on your doc's cancellation list. :)
Posted by ookearaoo12 (Member # 41442) on :
I did that, thanks Hopefully that helps getting in sooner!
Posted by Catgirl (Member # 31149) on :
You'll get in. Hang in there!
Posted by lax mom (Member # 38743) on :
Surely someone will cancel. If not, September will be here before you know it. Keep that appt! (Like everyone else advised)
Be sure to watch "Under Our Skin". It's free on Hulu.
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Hopefully that helps getting in sooner!