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Could Lyme be the answer?

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Posted 7/29/2019 1:33 AM (GMT 0)
HI! I have been trying to figure out what has been making me feel unwell. I have basically had MS symptoms for going on 2 years. I had a complete Lyme test a year ago that was negative according to my doctor however, I was positive for 45 KD IGG band only. Since I demanded that my doctor continued to try to figure out what is wrong with me, he sent me to a neurologist. The neurologist said I appear to have MS and sent me for a brain MRI, and spinal tap. The MRI was negative, but the spinal tap was positive for two well-defined gamma restriction bands. I did have a small bullseye rash a few years ago but thought nothing of it. Could it be Lyme? Any other thoughts? My doctors seem to be giving up on me.

Symptoms include:
Extreme neck pain and tightness
Headaches
Sweating
Traveling joint pain
Legs feel like jello/pins and needles/trouble picking up my feet/tripping over my feet
Very strange vision issues
Lethargic/trouble waking up no matter how much sleep I get
Forgetfulness/trouble concentrating/forget how to get to common frequently traveled places
Shortness of breath
and much more...

Some of these symptoms are daily, some come and go. Any thoughts or ideas would be very appreciated.
Posted 7/29/2019 2:10 AM (GMT 0)
Bullseye rash is definitive for Lyme, so yes you have Lyme. Sounds like you probably have some other coinfections also based on symptoms - particularly babesia. You will need to see an LLMD (Lyme literate medical doctor). I’m so sorry you’re doctors have been clueless. Did you tell your doctor about the bullseye rash?

The thing about the rash is unless people know what it means, they may not see a doctor for treatment right away, especially if they have no immediate symptoms.
Posted 7/29/2019 2:22 AM (GMT 0)
Thank you so much for responding! I did indeed tell my primary doctor about the rash, but he is less than helpful. (looking for a new primary currently). I've gone to him many times with many symptoms, most that could be explained by Lyme. He seems to think in my opinion of course, that I am a hypochondriac that is manifesting symptoms. The worst thing is my tight, painful neck, it can be unbearable at times. I've gone from a very active bodybuilder to a shell of a man currently.

Thank you again for your input.

Rob
Posted 7/29/2019 2:24 AM (GMT 0)
very likely Lyme

post a thread saying "Seeking LLMD near [your area]" and someone may be able to find a good LLMD for you
Posted 7/29/2019 2:39 AM (GMT 0)
Welcome to our forum, Rob

The EM is diagnostic for lyme - no doubt about it - with that plus your unexplained symptoms....


For help finding a LLMD - start a new thread “Looking for LLMD in/near________” and fill in the blank with your city/state.
Posted 7/29/2019 3:01 AM (GMT 0)
WOW! What a great forum! Thank you all so much! I'll post about the LLMD dr now. smile
Posted 7/30/2019 2:16 AM (GMT 0)
I do have to ask. Does the being positive for the 45 KD IGG band in my blood, and the two gamma bands in my CSF mean anything at all? My unhelpful doctor just discounts them as nothing. I was able to get him to send me for another Lyme test though.
Posted 7/31/2019 12:18 AM (GMT 0)
Rdouma73 you sound just like me.....so frustrating. My neck stiffness and tightness, shoulder, chest muscle soreness and tightness is off the chart. I have been to NUMEROUS doctors past 6 years. None know what to do. 41 IGG and 45 IGG positive and I have majority lymes sx minus bullseye. My husband had lymes few weeks b4 i got sick. He got antibiotics and got better, same md discounted my complaints due to different presentation. I am RN of 37 years, ICU mainly but no longer able to do that. Still nursing FT though....I just did a water only fast for 72 hours to reset immune system. Starting herbs, no longer can I sit back and do NOTHING! Its unbearable at times. I had a good talk with God (again) and I take comfort in knowing He has ALL the answers....hardest part is waiting on Him to share those answers with me!! I don't care if I ever get them, I will take a miracle unquestioned and give Him all the praise.

Post Edited (BryGi) : 7/30/2019 6:21:37 PM (GMT-6)

Posted 7/31/2019 12:25 AM (GMT 0)

rdouma73 said...
I do have to ask. Does the being positive for the 45 KD IGG band in my blood, and the two gamma bands in my CSF mean anything at all? My unhelpful doctor just discounts them as nothing. I was able to get him to send me for another Lyme test though.

Band 45 isn’t considered lyme specific.
What lab is the new test?
Try Igenex if you want a retest.
$250

You had an EM rash so not necessary to test
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