posted
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 Posts: 49 | From Taunton MA | Registered: Jul 2013
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Judie
Frequent Contributor (1K+ posts)
Member # 38323
posted
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.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Nancy2
Frequent Contributor (1K+ posts)
Member # 95
posted
Be sure to keep your appointment with LLMD. They should be able to rule Lyme in or out.
Posts: 1487 | From New England | Registered: Oct 2000
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lpkayak
Honored Contributor (10K+ posts)
Member # 5230
posted
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
-------------------- Lyme? Its complicated. Educate yourself. Posts: 13712 | From new england | Registered: Feb 2004
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
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.
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
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
Posts: 49 | From Taunton MA | Registered: Jul 2013
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posted
Also, eye twitches and head twitches
Posts: 49 | From Taunton MA | Registered: Jul 2013
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steve1906
Frequent Contributor (1K+ posts)
Member # 16206
posted
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.
-------------------- Everything I say is just my opinion! Posts: 3529 | From Massachusetts Boston Area | Registered: Jul 2008
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posted
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.
Posts: 49 | From Taunton MA | Registered: Jul 2013
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
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.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Ook, you can always ask to be put on your doc's cancellation list. :)
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
I did that, thanks Hopefully that helps getting in sooner!
Posts: 49 | From Taunton MA | Registered: Jul 2013
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
You'll get in. Hang in there!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
posted
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!
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