Lyme Disease Community
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1954553 tn?1337060116

What do these visual and other problems point to?

Hi. I haven't posted for a few years. I first signed up when I was having heart pvcs (still am) and just drifted away I guess. My health is slowly deteriorating and just wanted to see if anyone else here shares the same symptoms.  I am waaaay worse than I was a few years ago. I have had so many tests but doctors have never found anything wrong with me. I feel cursed. And toxic. I cannot imagine living along life feeling this way.  Anyways, I going to copy from a post I have in another forum--if anyone recognizes these symptoms and can point me in the right direction I would be so grateful!
I have been unwell the last 8 years, gradually becoming more sick over the last 2. My symptoms are very debilitating. I have had a whole host of tests from doctors and nothing is ever found. My symptoms are many but the most troublesome are : extreme dizziness/lighthead (can no longer drive, lying flat no longer relieves), extreme brain fog (can't think, process), neck tightness/pain, daily left under rib presssure/pain, benign pvcs (hundreds if not thousands per day), numb lips, legs (from knee to ankle),  orthostatic issues, low blood pressure, anxiety attacks/night attacks, strange mental sensations hard to describe, and lots of visual problems. I'm attaching picture I made to show what I'm experiencing visually. I see tons of electric blue or silver dots throughout the day. Also, I see purple flashes that are bigger and lights stay in my eyes long after I've looked away from them. The dots look as bright as the Christmas lights in the photo but can be blue or silver. Happens at any time: sitting, standing, eyes closed, dark, light, indoors, outside, etc. Does anyone else see these dots with this much frequency? Like I've said, have had heart tests, MR I (no contrSt), blood work, eye tests, etc....all negative. I feel like I'm slowly dying. Maybe this unusual symptom could help with diagnosis.? Someone out there has to have experienced this also. Dr's don't know what's going on or don't believe me. I'm not anxious or depressed, I know there's something not right going on in my body-I don't know what it is. I feel toxic and as if I'm dying.  Thanks for listening and for your help in advance.  http://imgur.com/TUsN4FH    (link to photo)
5 Responses
Avatar universal
Hi, one of my first symptoms of Lyme was visual snow. It's basically seeing dots in your field of vision. For me, I see small dots (kind of like static) over blank surfaces. Lights also stays in my eyes long after it's gone and I too saw stars (not as prevalent as you see them and they've decreased with treatment). They ranged in color from white to blue. Very annoying. This bizarre symptom is one of the reasons I thought I had Lyme. Visual snow has been linked to Lyme. All your other symptoms can be lyme symptoms as well. You should find a Lyme literate doctor and get tested for Lyme through Igenex. This is the most reliable testing for Lyme. The doctors I went to had no idea what was wrong with me. You need to find one that is Lyme literate. Just google "how to find a lyme literate doctor." Let me know if you have any questions.
1763947 tn?1334055319
I agree with Winnie. I believe you have Lyme and need an igenex test to confirm. Although not one of my first symptoms, I have the visual problems. It is so bad I have to see a retina specialist every 6 months because my vision could get much worse. I take drops and have eye plugs now.

Email ILADS.org and ask them for an LLMD near you.  Once you find one they will test you with igenex and will treat you properly. Unfortunately our mainstream doctors just don't know much if anything about Lyme.

If you have further questions we are here for you. Good luck!
1954553 tn?1337060116
Thank you both for your kind reply. I will definitely be looking for an LLMD asap. I'll let you know the outcome.
1954553 tn?1337060116
I seen a new doctor 2 days ago. She took one look at me and my symptoms and believes I have Lyme or Ms. Waiting on blood tests to return and MRI to come within the next few weeks.
Avatar universal
Good for you!  It sounds like the doc is being cautious, testing for other possible conditions to be sure everything is considered.

FYI, an MRI will not, from what I understand, tell you anything about whether you have Lyme, but instead will rule out other possible ailments.  This is a sign of a thorough MD, and that's what's needed.  Problems arise when docs will consider everything else BUT Lyme -- but your doc sounds like she is being thorough.  

I would suggest that you ask for copies of ALL test results the doc runs (both positive and negative), and keep a file or binder at home and put all the paperwork into the binder.  You may never need it, but in case a future doc wants to look back into your history, you would be the best guardian of the docs:  I find that doc's offices are not necessarily careful about being sure ALL test results are filed properly or sending a client copies of *everything* from the file in future.

Look at it this way:  if you were tested for A and B, and A came back negative but B is a very rare condition, the doc would tend to focus on A rather than B, because A is so much more common.  That makes good sense in mathematics, but in humans ... not so much.  That's how things get overlooked.  So be your own best guardian by always getting copies of ALL test results, EVEN THE NEGATIVE ONES.  

My view:  I paid for the tests, so I get FULL copies.  You go!
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