Hi Everyone -
For those of you that don't know -- I have yet to receive a Lyme diagnosis and I have been suffering with symptoms for quite some time now. I have an appointment tomorrow with my Primary Care Physician (who is amazingly patient I might add). I plan on printing out this thread to show her why I truly believe this could be Lyme (or not I am not a doctor) ...... I would like to provide you with my entire history / symptoms etc and please share with me your opinions on whether or not this sounds like it could be Lyme Disease. Any help is greatly appreciated. Please feel free to talk about the "neuro lyme" vs other types since I don't have the classic text book signs (rash, fevers, etc). I will include everything that I think may be revelent.......
2002 - Road trip to Canada -- Got very sick with vomiting, fatigue, dizziness/lightheaded, slight fever
about 1 month after being sick I started to notice my vision was off. I was noticing especially in the skies or plain backgrounds that I could see these tiny "sparkly" lines/dots swimming in and out of my vision. I also notice small, short hairlike lines that were wavy and also zipped around in my vision. In addition, I would notice that when I would wake up in the morning only my entire body would be very stiff and achy - I felt like I got hit by a bus or that I slept in the most awful position. Lastly, around this time I every night would wake up in the middle of the night with a completlely full bladder (could be completely unrelated)
2005 - Still having the same visual phenomena where I would see sparkly things swimming or zipping around in my vision. I didnt think anything of it until I started getting non stop headaches, these headaches would start in the afternoon time and would stay with me for days. Once I had the headache (achiness over my left temple) for 3 days along with the visual stuff and what felt like sinking sensations in my head, it was a like a quick drop of blood flow or something. I reported this to my dr at the time. She ordered a cat scan / mri / eeg. All normal except for the EEG -- Showed "seizure like acitivity" - Got a 2nd opinion and was told that although it showed some activity it was within normal limits and it was not a seizure disorder.
That doctor diagnosed me with migraines (mind you i had never had a full blown migraine) - He later referrded me to another dr who was interested in "oddball" cases ...... He ran a bunch of bloodwork. The following came back slightly abnormal:
Elevated AntiPhospholipid IGM Antibody
Elevated Lymphs (Lymphocytes)
Low Vitamin A and D
Decreased Factor VII
Also found to have -- High Prolactin levels due to Pituitary problem (pituitary adenoma), heart arrythmia (PVCs, Tachycardia, and SVT episodes).
Within 2 years I had a lot of the following symptoms:
-Visual Phenomena ----- "Sparkly" vision, sparks/dots/specks/lines that either flash or zip around in my vision, LOTS of floaters, this greyish sideways half moon above the center of my vision that appears and disappears, static vision at night, loss of vision, and more Im sure...
-Headaches / Migraines
-constant Off - balance or tippy feelings
-Very easy bruising, especially in legs
-Left gland swollen in throat area
-joint pain that only comes and goes and stabbing in nature
-stiffness of the back / shoulders
-muscle cramps / pain
-muscle twitches all over body and even on temples and forehead
-anxiety and panic attacks
-bouts of light and sound sensitivity
-ringing in ears, tinnitus
-woozy / lightheaded feelings
-burning / stabbing sensations
-neck pain / neck sounds sandy when i move it around
-irregular period and milk production (but both due to pituitary problem)
-queasy stomach / bouts of nausea
-heartburn and stomach pain
-low abdominal pain and cramps
-shortness of breath at times
-chest wall pains
Sorry for the long list but I will note - I was placed on Doxy for only 5 days in which I felt a bit of fatigue. I had a few sleep paralysis episodes while on the med and several after I stopped. I was told to stop by the way and not kidding but the first day off my stomach was a mess, severe diarrhea with nausea (especially worse in the am) and cramps/pains. Other symptoms that I cant think of at the moment but I felt my stomach was a mess OH and my vertigo was nasty, got 10 times worse and its been 6 months and I still feel like Im on a boat......
Pls, for those of you with Lyme disease, any thoughts? I guess I could have been more organized but Im so exhausted and really slacking. Oh and if you look back in one of my older posts you will find my Western Blot Results which is as follows:
66 KDA Reactive H (IGG) Interpretation IGG negative
23 KDA Reactive H, 41 KDA Reactive H (IGM) Interpretation IGM positive
So, 2 positive bands on the IGM and 1 positive band on the IGG.
Now, even with my positive bands I have NEVER had ANY major neurologic involvement (such as encephalitis/encephalopathy, meningitis, etc.)
or active arthritic manifestations (active synovitis)
Please any feedback here will help, it is for me to show my dr the thoughts/opinions of people that are actually understand what Im going through and are diagnosed with Lyme.....Anything from listing your symptoms, or to how long it took you to get a diagnosis, or how you too were brushed off ..... anything, just something :)