Hi guys. For 3 months I have had migratory shooting/stabbing/pulsating pains in my body. When it first hit I thought I sprained my ankle as i could not walk, in the am I was fine. The next day I had pain in my right foot and toes, felt like they were being crushed...an hr later I was fine. Well now I get pains all over my body-mainly ankles, fingers, spine, shins. At the onest of this pain I started getting EXTREME joint cracking. Now the past 1.5 months I have had muscle twitching all over my body non stop.
I have had a full body bone scan, MRI of head and lower spine (oh I am tender on my spine where my bra strap hits), tons of blood work-all okay. I got tested with IGENEX and was positive on the IGM for band 31 and IND on 34 and 41 and then positive on the IGG for 41--however, Igenex report reads in order to be "positive for lyme" one needs two pos on teh IGM nad 5 on the IGG. So my dr now says this is just all anxiety causing this (I did lose my father recently).
Can you give me your feedback on what you would think/do etc????
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.
"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."
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.
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.
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.
Here is my key list of symptoms and labwork. Prior to '06, all was totally normal for me.--Jason
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.
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?
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. :-(
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.
How long have you been on meds and are they working?
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.
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