Why havent you tried the antibotics yet if that will help?
Only antibiotics help, but I haven't gone there yet.
Do those meds kill the lyme?
I've been on pain meds for about 7 months. I started wtih Nortriptylene which only helped slightly and then I switched to Nuerontin (1500mg/day) for last several months, which also only helps slightly (I think). Anyway, I've stuck with this one since it seems to be more common. The NSAIDS offer me no pain relief, although they do help with headaches somewhat.
WOW okay, so those swirlys are exactly what I see. However, I have seen them for over 10 yrs and just learned to deal with it as the neuro's had no clue nor did the eye doc. I see them all over my computer screen too. I see hundreds of them racing around.
I wonder if I have had lyme for over 10yrs and just did not know it? Wonder if its possible for the worst symptoms to come out yrs later due to stress, surgery etc.
Very interesting.
How long have you been on meds and are they working?
I have all of the typical symptoms of "visual snow" - flashing, retinal peristance, streaking from bright lights in dark setting, etc.
If I look at blue sky, it begins flashing after a few seconds and then I see white squiggly dots/lines making rapid circling darting motions. I do not look at blue sky anymore, it is too irritating. I also avoid light colored solid walls. :-(
Do you see these swirly type dots too?
Wonder if I could have had this for 10 yrs with the worst symtpoms (pain, twitching etc) coming out now
Sure sounds like lyme to me.
Wow, so I have had visual snow for about 10 yrs. In the day, if I look at anything light I see little blueish dots swirling around but at night its like a bit of a tv screen-is that what you see? Also around this time I started getting mirgraines with auras and panick attacks.
Two yrs ago I developed GERD>
I wonder, if all these yrs I have had Lyme, I guess I would have known though?
Here is my key list of symptoms and labwork. Prior to '06, all was totally normal for me.--Jason
Key Symptoms:
Brain/fog dizzy persistent headache (6/06 to 2/07)
Sore/burning Butt (6/07 to present, gradually worsened over that time)
Cognitive Impairment: brain fog, clumsy (2-08 to present)
Bad floaters (4/08 to present)
Visual Snow (4/08 to present)
Peripheral Neuropathy (3/08 to present)
Tinnitis (5/08 to present)
Esophagus/stomach problem (5/08 to present)
ALT strange (3/08 to 5/08 was high and then returned to normal 6/08)
Neuro Test Results:
1st and 2nd Brain MRIs w/o contrast (taken ~8/06 and 3/08, respectively w/o change, UBOs unremarkable), EEG, VEP taken 4/08, both normal
Blood work: std batery of tests all normal, liver panel normal, auto-immune tests all normal.
Lyme Tests (4/08-6/08): ELISA (negative). Western Blot inconclusive (repeated with same results: IgM positive, but IgG negative). CD57 was low (< 40) which indicates chronic Lyme by ILADS study.
Hi Jason, I have not gone on meds yet. I only tested pos on 31 and IND on 34 41 for the IGM and pos on 41 and IND on few for IGG. SO its not "positive", though COULD be. So you had two bands pos on the IGM? You should get treatment asap then. I am going to try the "urine/anti" challenge, I guess when you take the anti the bacteria dies and comes out in your urine. SO that is next for me.
Can you share your symptoms?
I have not had a CD57
Hello,
I have many of the same symptoms as you do (Igenix). My IGM was positive, but IGG was considered neg (but showed pos on 41, 45, 58). Can you comment how long you were on antibiotics and did you take IV antibiotics. If I do have Lyme, one reason I am apprehensive to take them is because I probably would need to take IV antibiotics to be effective.
BTW, did you have your CD57 done? Mine was very low indicating chronic Lyme, but again, it is not a common test, so not sure how much faith to put into it.
Wish you the best. Jason
Initial symptoms were bullseye rashes (3), eye pain and floaters, joint pain, fevers. The neuro stuff started about 7 months after the rash. I had twitching, nerve and muscles pain, weakness, blurred vision, dragging a leg, MS-like symptoms, trouble walking, brain fog, fatigue, fevers, diarrhea, vomiting elevated liver enzymes, numbness, tingling, burning, bizarre rashes all over my body. Too much to list it all. It's a long story. I started on antibiotics about 15 months after the rash. It took 5 years to recover to almost normal. I had remission for several years. It all came back again after having spine surgery. Again, I have improved from taking antibiotics.
Wow, thanks so much for sharing Patsy. So you just had one post and two IND like me? What were your initial sympmtoms? How long was it till you finally went on antibotics?
My Igenex showed 30+, 39 IND, 41 IND. I have all those you symptoms you describe. I have improved considerably from antibiotcs.
"There are nine known Borrelia burgdorferi genus specie specific KDA Western Blot antibodies (bands): 18 23 30 31 34 37 39 83 and 93.
ONLY ONE of these Borrelia burgdorferi genus specie specific bands is needed to confirm that there is serological evidence of exposure to the Borrelia burgdorferi spirochete and can confirm a clinical diagnosis of Lyme disease."
Source: www.wildernetwork.org/Understanding_Western_Blot.html (Dr. Jones' website)
And I repeat: IND = weak positive, not negative :o)
An experienced LLMD would most likely diagnose you with Lyme disease based on the bands that reacted on your WB along with the kind of symptoms you are experiencing.
You should contact a Lyme support group in your area and try to get an appointment with a Lyme specialist. Where Lyme disease is concerned, time is of the essence.
Hope you feel better soon,
Dora
Thanks again for your help, so do you think even though I had only 31 pos on my IGM I would be dx for Lyme? Its so confusing to me.
My pains are horrible--like stabbing deep muscle pains that feels like its my bones.
I had two IND bands (31 and 39) on my IGeneX test along with a few positives. My LLMD considers IND bands as important as positive ones. IND = weak positive.
If you show your lab results to an ILADS LLMD, he/she will probably say that you have Lyme disease. LD would explain why you have symptoms like migratory pains, joint cracking, and muscle twitching.
Well I am IND for 34 so would that still mean I have lyme as Igenex reads I have to have 2 out of three and I only have one-31? I am so lost...
Igenex reports the CDC criteria ( 2 of 3 and 5 of 10) as well as the rest of the bands.
Igenex reports the CDC criteria ( 2 of 3 and 5 of 10) as well as the rest of the bands.
Here are the bands that are specific to Borrelia burgdorferi: 18, 23, 30, 31, 34, 37, 39, 83, 93.
You can read "UNDERSTANDING LYME WESTERN BLOT" on Dr. Jones' website (www.wildernetwork.org/Understanding_Western_Blot.html). Dr. Crist, in Missouri, also explains it very well (www.drcharlescrist.com/testing.htm).
You have two specific bands--31 & 34--which would be impossible if you had never been exposed to Lyme disease. I don't understand why IGeneX requires so many positive bands. But it doesn't matter: Lyme-Literate MDs make clinical diagnostics based on history of patient and symptoms. If you happen to also have a couple of specific bands on your Western blot, then there's little room for doubt... You are experiencing many classical symptoms of Lyme, so if I were you I'd look for a LLMD ASAP.
Here is a list of Lyme support groups (tons of them!) in your state: www.lymenet.org/SupportGroups/UnitedStates/California. I found it on the forum LymeNet. They will help you find a good LLMD in your area.
Good luck to you,
Dora