posted
I had posted this under Seeking a Doctor but think it should go here. I'm anxious to know what your opinions are on these results. I'm still reading and trying to learn what this means and info on Lyme. I have so many of the listed symptoms, have had various diagnoses from rheumatoid arthritis to osteo arthritis to lupus (two different positive tests years ago) to fibromyalgia to probable myasthenia gravis but negative on blood work, an emg/nerve conduction that showed a mis-communication between the nerves & muscles but a negative muscle biopsy 3 years ago. There's so many aches/pains/problems that I don't even remember them all altho I'm starting to make a list. The biggest problem right now is neuro muscular and balance/weakness and pain here and there. I have a swallow test tomorrow. I choke easily and just can't get a breath plus the right side of my chest has been so painful the last couple of weeks that it hurts to breathe or move. I assumed I pulled a muscle but it's not getting better and at times it seems to spread all across my chest.
Normally I have very low blood pressure but last Sept. I ended up in the hospital with a bp of 199/90 and it continued to be around 145 or a bit over for several months. I'd get so hot and pain across my upper chest. My bp is back to normal for me, meaning low. I do get palpations but have mitral valve prolapse so they don't scare me too much. I get spasms in my fingers, feet burn like crazy, numbness and tingling in my legs, arms and legs are very weak and I'm finding it very difficult to walk much or my legs burn. I stagger like I'm drunk and have had a few falls. I have macular degeneration, had peripheral bleeding so not much of that is left in my right eye. They think I have hemi facial spasms on the right side. I've had trigeminal neuralgia on the right side but this year it's been on the left. I've been getting chills and feel like I have a low grade fever for several weeks but I've done this for years also. I tremble for no reason. Too many different things that make me feel like I'm losing my mind! Which doesn't seem to be functioning too well either.
There was a positive blood work for Lyme two years ago (no idea which test) that apparently my neurologist didn't pick up on but the rheumatologist I've just started seeing noticed it and must have kept that record. This is the Western Blot she ordered and gave me a copy of:
Here's the lab work that was done on 4/22: Lyme Disease IGG and IGM Western Blot (IGG). WB 18 KD (IGG) BAND NEGATIVE 23 NON-REACTIVE 28 NON-REACTIVE 30 NON-REACTIVE 39 NON-REACTIVE 41 REACTIVE 45 NON-REACTIVE 58 NON-REACTIVE 66 NON-REACTIVE 93 NON-REACTIVE
B. BURGDORFERI AB (IGM). WB POSITIVE 23 KD (IGM) BAND REACTIVE 39 KD (IGM) BAND REACTIVE
Thanks for any insight you have, Jackie
Posts: 10 | From Jacksonville, FL | Registered: May 2008
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Jackie, what lab performed this test ? Secondly, band 39 is pretty specific of Bb {Lyme} infection.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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posted
Your crazy symptoms certainly sound like they could be lyme.
Your test results also support that your symptoms may be attributed to Lyme. You have a positive western blot and if coming from Quest, it is VERY UNLIKELY that these are false positives.
I had 2 IgM bands positive from Quest and only 1 IgG band positive and have now been treating for 10 months and am MUCH IMPROVED!!!
You are heading down the right path.....you really need to be sure to file a complaint for the doctor who missed your results the first time around....
Posts: 561 | From mass | Registered: Jul 2007
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Dear Jackie,
You need to find a Lyme Literate Medical Doctor.
I am always suprised when Quest finds something.
In your case Lyme specific bands.
Be careful about steroids. You can get really ill if you have Lyme and take them.
Please post in Seeking a Doctor with your state and city.
A LLMD is your best hope for getting better.
You may also have co-infections that a normal doc or even a specialist
Wouldn't know how to recognize or treat.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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posted
KS, it's really good to read you're much improved. Keep it up. I do plan to file a complaint once I have a doc that actually tells me I have Lyme. So far, it's only the rheumatologist saying she's confused by the Western Blot. But I think she's trying to help, more than doctors in the past.
General, I had posted under Seeking a Doctor a couple of days ago. So far, I'm not finding anyone in Jacksonville but may have one possibility that I need to check out more. I feel I need to see someone soon. I'm not too comfortable seeing an infectious doc on the 27th but at least I have some info now to arm myself with.
I plan to post next about results of an MRI that was done in Feb....by another neurologist who only wanted me to have gamma knife surgery for trigeminal neuralgia. Glad I haven't done that but probably would have if my insurance had covered it. Thanks, Jackie
Posts: 10 | From Jacksonville, FL | Registered: May 2008
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
CDC positive WB and your symptoms are very common for lyme (I had some of the same sx). You need to start treatment.
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
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posted
Jackie,Have you been tested for endocarditis? My bestfriend had it,because she has a prolapsed mitro valve. Atheana
Posts: 196 | From from a far | Registered: Jan 2008
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