posted
I seem to be the enigma of the doctors in this area. Let me first state I am only 27. I have been having symptoms that have been increasing in urgency and the doctors are batting me back and forth with "normal" results. I have been suffering from joint pain for about two years now that has been getting worse. In the past three months I have had numbness and tingling in my lips and cheek and some paralysis of my left cheek. I have tightness across my chest then a shooting pain and then numbness in my hand and wrist. My heart has also seemed to pick up on its rhythm. (It has reached 140 beats per minute and I have to take baby aspirin to make it slow down) I was hospitalized last week for observation and my heart is healthy and fine. My parents live in a highly deer tick infested area, but Lyme has come back negative. I have twitching in my eye and cheek and the chest pains have become worse over the past two weeks. The doctor tried to tell me it was panic and gave me medicine that did NOTHING. Could I still have Lyme? Does anyone have any suggestions? I feel like I'm going crazy with all the "normal" results. Thank you
Posts: 6 | From Maryland USA | Registered: Jul 2006
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I'm sure a lot of people more knowledgeable than me will post, but I saw your post and just wanted to respond to say that I have had such a similar expereince, testing negative for Lyme and having many of the symptoms you have.
First, here is a link to check out, it's the newbie help link and it is positively loaded with information:
What happened to me and to a lot of us is that we got either an ELISA or a Western Blot test that was sent to a lab other than Igenex. So many false negatives come back this way, since it is the standard for doctors to use when testing for lyme.
Once I had my blood sent to Igenex I came back positive. This was so important for me to not give up when I tested negative. If I would have given up neither I nor my family would know we have Lyme. At present, every one of my family who has been tested (through Igenex) has tested positive.
You will also want to find a Lyme Literate doctor. If you post in the Seeking a Doctor section someone should e-mail you a list of LLMD's in your area. We don't post names publicly here.
Good luck, don't give up, trust your instincts and congratulations for finding the site!
Cheers,
Alison
--------------------
The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Hey Pixie,
It certainly could be lyme. Blood tests for lyme are notoriously inaccurate so the negative test doesn't surprise me.
The chest pain and heart problems could be a common infection that goes along with lyme called babesia. You'll need to see a lyme literate MD [LLMD] to get a handle on these things and get treated.
All of your symptoms are very common for lyme and babesia and can be treated.
Go to the "Seeking a Doctor" section of this forum and post a request for a good doc in your area. Someone will send you contact info by Private message. The little icon above your post.
Secondly, keep reading here, you'll learn a lot. Feel free to ask questions and welcome.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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Carol B
Unregistered
posted
Hey Pixie-Greetings from a fellow Marylander! Welcome Hon !
I will pm(private message)you the name of my LLMD-that is my Lyme Literate Medical Doctor. What a breath of fresh air it will feel for you to get to a doctor who will listen to you and not dismiss your symptoms .
A negative Lyme test means diddlysquat (sp) with Lyme Disease-and you sure sound like a candidate to me.IMHO
I got the run around for two years-You are not an enigma-the docs are just plain ignorant. I cried with relief when I finally got to an LLMD-then I cried with despair-then I cried with anger knowing I didn't have to get this sick-until I came here and got things back in perspective . I am in my fourth month of treatment now.
It can be a rough road-but there is hope. What appears to be the end-may just be a new beginning!
Blood tests for lyme are not that accurate. Lyme is a clinical diagnosis. Clinical meaning by symptoms and patient history. At the bottom of the western blots it states this.
Considering you live in a highly deer infested area it certainly could be lyme.
If you suspect lyme its a good idea to find a lyme literate doctor. There is a place on the board when you come to flash discussion called "seeking doctor section"
I hope you can find someone to help you and feel better soon.
here is another link that I have found very helpful.
take care and don't forget to read the newbie links located at the top of medical
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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bettyg
Unregistered
posted
quote:Originally posted by flln_pixie:
I seem to be the enigma of the doctors in this area.
Let me first state I am only 27. I have been having symptoms that have been increasing in urgency and the doctors are batting me back and forth with "normal" results.
I have been suffering from joint pain for about two years now that has been getting worse.
In the past three months I have had numbness and tingling in my lips and cheek and some paralysis of my left cheek.
I have tightness across my chest then a shooting pain and then numbness in my hand and wrist.
My heart has also seemed to pick up on its rhythm. (It has reached 140 beats per minute and I have to take baby aspirin to make it slow down)
I was hospitalized last week for observation and my heart is healthy and fine. My parents live in a highly deer tick infested area, but Lyme has come back negative.
I have twitching in my eye and cheek and the chest pains have become worse over the past two weeks. The doctor tried to tell me it was panic and gave me medicine that did NOTHING.
Could I still have Lyme? Does anyone have any suggestions? I feel like I'm going crazy with all the "normal" results. Thank you
Welcome pixie,
I'm sending you by PM, private messae my newbie links to visit, 12 pages worth.
Did you have western blot igm/igg blood tested by IGENEX or MD Labs or Bowen; rest are NOT good TICK labs!
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posted
You all have been so friendly and nice I just wanted to thank you. I don't feel like I am crazy anymore! Now just to find a doctor...(yes, I've posted for one) I orded all my results from my doctor today. They threw a fit because I wanted it all. The nurse kept saying "what are you trying to rule out?" Well of course my answer was "everything" and she got into a snit! Hmmm for some reason I thought doctors were supposed to work for you and your health. As my husband says, "they didn't pay for those results you did and they can just hand it all over." This has cost so much so far and it's only going to get worse. How does everyone deal with the cost?
Posts: 6 | From Maryland USA | Registered: Jul 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Welcome to the board. Many of us here have been in the same place, always going to the doctor and getting "normal" results while knowing we are sick. I would get in my car after a doctor appointment and break down in tears because the test results were all negative.
I am 31. I was 27 when I found my LLMD and 28 when I was officially diagnosed with Lyme. I had many, many negative Lyme tests.
My best advice is to not give up. Whether what you have is Lyme or something else, keep pushing until you know. It's also a good idea to start keeping a journal of your symptoms to have when you see a lyme literate doctor. That will help with a diagnosis.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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liz28
Unregistered
posted
I am not a medical doctor, and can only offer suggestions, not medical advice. That said, here's two actions you might consider while working on your diagnosis.
First, if you have any rancid cooking oil around, you may wish to coat your face with it, sleep in it for a week, then dunk your head in a local algae-covered pond and swish it around.
When I did this, I was SO grateful that the doxycycline I took for my awful acne problem also happened to be an excellent temporary treatment for both Lyme disease and babesia. Doxy is one of the most widely prescribed daily acne medications in the world, and is also a common malaria prophylaxis taken by travelers in tropical areas. The only side effects for most people are nausea if you take it on an empty stomach, and increased sun sensitivity. If you use a sunblock with mexoryl, Parsol, or titanium dioxide, you can get excellent UVA/UVB protection.
Also, you may wish to visit www.vitacost.com and order Nutricology artemisinin. Take 300mg per day for a week and watch for a shift in symptoms. If you feel worse, then much better, you may have babesia, since artemisinin temporarily clears both malaria and babesia from the bloodstream. It is not a cure on its own, however, so you'll want to start researching more extensive treatments.
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mlkeen
Frequent Contributor (1K+ posts)
Member # 1260
posted
Liz has a point, if you have any zits at all try getting doxy or tetra for the acne. Vasaline will usually get a good crop started! (We are only about half kidding!)
Posts: 1572 | From Pa | Registered: Jun 2001
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