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Please Help - 5 Years and No Answers

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Lyme Disease
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Posted 5/1/2011 1:57 AM (GMT 0)
Hi Everyone -- Please I need help before I totally lose it and completely give up.

I have been suffering with symptoms for 5 years now and still no answers. I ended up in the doctors office with chest pains and was tested for Lymes by ELISA which was positive (equivocal positive). Mind you, 3 years before that I was tested by ELISA and was negative therefore it was laid to rest since it was a negative test.

After the positive ELISA I was then tested by Western Blot which showed some positive bands. I was seen by an Infectious Disease doctor who said that Lymes testing is very erroneous and can create lab errors and false positive tests. He did not feel I had Lymes since I did not present with the severe joint pain *although I do get pains* and no rash and no fever .....

My question to you guys .. Can you please share with me your symptoms .. I really want to match it with mine to see if they are similar. Here are my symptoms/story:

I first presented with visual disturbances of "sparkly vision". For example when looking at a plain background such as a blue sky or white board in the center of my vision I would notice small fast moving squiggly silver lines. I also noticed black fast moving squiggly lines.

Later I developed dull headaches and "sinking feelings" or feelings of dizziness accompanied with these visual disturbances. I also had zappy and head high feelings. This progressed and I also got severe neck and back pain with electric shock feelings in my left hand.

Today I have headaches, visual disturbances (as well as blurred vision), severe vertigo/dizziness, fatigue, chest pains, heart palpitations including skipped beats, muscle and joint pain (not severe), but most of all my vertigo and vision are the worst of my symptoms ... oh and the heart palpitations
Posted 5/1/2011 9:15 AM (GMT 0)
Thank you so much for your reply. would you say though that it would unlikely be lyme if after 5 years and no treatment it would have affected the joints like my knees by now?
Posted 5/1/2011 1:55 PM (GMT 0)
I did not get constant joint pain until I started antibiotics. I did have migratory stabbing joint pains but when I started antibiotics I limped from my knee pain and then could barely move my elbow. That has all passed now being on antibiotics for 2 years. I think lyme is just so mysterious that it affects everyone differently. That is why they are having problems with research and treatment. Have you tried magnesium for the heart palps? Lyme strips you of magnesium and it does wonders for me, totally eliminating the heart palps. I haven't found anything to help with the vision in my one eye other than drops to sooth it. I believe I had lyme for probably 5 years with on and off symptoms before the symptoms got horrible. Then i went another 3 years undiagnosed. Please get to an LLMD so you can begin treatment before you end up with neurological damage like I have.
Posted 5/1/2011 6:54 PM (GMT 0)
I too went almost 5 years before my final diagnosis of lyme. I never had joint pain. I had neuro lyme. I never had a tick bite, rash or fever. I started getting sick when I was 20 years old and in college. I had migraines, exhaustion, anxiety and panic attacks and heart racing and palps. Those were my first main symptoms. I also was getting ear infections and strep throat on a regular basis for over a year. I went to countless dr's looking for answers. I always felt like I had the flu that just wouldn't go away and was losing weight from not having an appetite. This went on for over 3 years years. I too had the elisa test done during the first year of symptoms and it came back negative. I went to see an infectious disease dr and he said I didn't have enough positive bands on the western blot to say I had lyme and that rather, I had emotional issues and should see a shrink. Well, I knew I was sick and didn't take their answers. I had another elisa test done which was negative again (this was 2 years after my first one). Well, at age 23 I had my tonsils removed thinking this was going to make me well and I would be fine. I never recovered from the surgery and went downhill very quickly. 3 months later I was diagnosed by a lyme specialist over the phone and put on treatment. I had a western blot test done 3 months later and I had every single band possible. I was in the late stage of chronic lyme and spent 2 1/2 years on treatment before I got well.


Keep on pushing forward. Don't let the dr's tell you you don't have it if you believe you do. The tests are not accurate. Most lyme literate dr's will diagnose based on your symptoms and not on lab work. Had my tests come back positive I probably could have been cured of this disease early on and not have gone through the hell I had to go through with treatment. And that was 15 years ago now. I can't believe the testing and treatments have not come any further along by now. It's really upsetting that others are still dealing with this today.

Again, be your own advocate. I did not listen to the dr's who told me I wasn't sick. I knew I was very sick and needed help and thank god I was able to find someone who could help me.
Posted 5/1/2011 11:16 PM (GMT 0)
Thank you so much for your reply.  Its funny you mention that because my joint pain came out after they tried me on Doxycicline for about a week.  Also, I haven't tried Magnesium so i will give that a shot!!  If you don't mind me asking what is your vision problems like?  And, I see you take baby aspirin a day, what is that for?
Posted 5/2/2011 3:50 AM (GMT 0)
I'm really sorry to hear how sick you've been. But I have a very similar story except I had it for 15 years with no answers.

A lot of doctors are scared of diagnosing someone with Lyme. I rememeber once i finally got diagnosed I was treated with a few weeks of antibiotics. I started to get worse. The same doctor was trying other solutions but everything came back negative. Then I started to get sever permanet damage in my neck according to my x rays which was when my doctor told me to go and find a lyme specialist. I asked her why she couldn't just treat me and she said no, she cant. I asked her if I should see an infectious disease doctor and she said no, a lyme specialist. I asked her how to find one and she simply said she didn't know. Which was what led me to these message boards, which led me to my LLMD.

You really need to see a Lyme Literate Medical Doctor. Infectious disease doctors are a joke in my eyes. They are sell outs and aren't doctors that want to "help people". Infectious disease doctors wont treat chronic lyme, infact they will tell you it doesnt exsist. But Lyme literate doctors do treat for chronic lyme.

I hope you get well!
Posted 5/2/2011 3:50 AM (GMT 0)
These are all known Lyme syptoms. It is thought that only 10% of people get the bull's eye rash. Not everyone remembers a tick bite. Not everyone has fevers or constant pain either...I don't... I never get fevers, even with colds/flu.

Lyme tests are extremely inaccurate, and also Lyme is supposed to be a clinical diagnosis (based on symptoms) with tests only providing support for the diagnosis if the tests are positive. Since you have had 1 positive test result (the ELISA), and you have classic Lyme symptoms, I'd suggest strongly that you find an LLMD and be properly evaluated for Lyme, and treated if the LLMD believes you have it.

Take care,
Posted 5/2/2011 4:20 PM (GMT 0)
Baby aspirin is good for circulation and heart and since lyme causes thick blood and I now have circulation problems (hands turn blue in shower every day), I figured it couldn't hurt. My one eye is constantly like having a drop of water in it. It is kind of lightly clouded, like I can't clear it. If I get stressed or anxious or mad, it turns very bloodshot and red. The only thing the neuro-opth could find was that the blood vessels in this eye are small. While I failed all the vision and field tests, the regular eye dr. could find nothing wrong with the eye. Frustrating.
Posted 5/19/2011 12:22 AM (GMT 0)
Hi neurogurl,

Have a read of my post 'Lyme or not lyme, that is the question, it may interest you.

I still have not been diagnosed with Lyme yet. I have got many strange symptoms that I've had for the last 5 years. I am waiting for my second ELISA test to come back, as the first one went AWOL. 6 weeks I was waiting only to find out that it wasn't on the system. My I.D Specialist is on the case. Not sure how far I will get with this specialist.

Lyme symptoms seem to follow a similar pattern, although we are all individuals and we all won't react exactly the same to the bacteria. I think the severity of the symptoms varies depending on time scales and how susceptible our immune system is.

I hope you get sorted soon.
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