I just found out what I have been experiencing these last few months is Lyme and I gathered from my research that a LLMD is the best Dr to contact. I live in IL about 50 miles east of St. Louis, MO. Any help would be greatly appreciated. Glad to finally know what has been causing all this.
Posted by hopingandpraying (Member # 9256) on :
PM sent.
Posted by lmedler (Member # 32429) on :
Thank you for the info. Wow, is it normal to not be able to get in for months? October seems a long time to wait while feeling awful.
Posted by elkielover80 (Member # 28368) on :
Unfortunately it is normal to have to wait a few months before seeing an LLMD. There are just too few of them to deal with the heavy load of patients who desperately need help.
You could make sure you get on their cancellation list. I got into my dr about 6 weeks earlier than expected because of a cancellation.
In the meantime, you could work on strengthening/supporting your immune system with supplements. If you can get your hands on abx and get them started, that could be helpful (I wasn't able to do that)
October seems like such a long wait but it's definitely worth the wait to be in the hands of a physician who knows what they are dealing with!
Posted by lmedler (Member # 32429) on :
Thanks for the info.
I had a positive EIA 1.87. then the western blot came out negative with only band 23 IgM being reactive. Is this something I should still pursue?
I pulled a non attached tick off my leg that must have been in my bed after I got up in the morning. We had been fishing several days beforehand and I had pulled 3-4 ticks out of each of my daughters hair.
About 3-4 wks after all this I started with severe dizziness, joint and muscle pain, daily headaches and I am so tired.
My husband also has noticed when I am feeling particularly awful that my speech slurs and I am hard to understand.
I was started on abx by my PCP on my suspicions but after 3 days I felt so much worse and completely quit them after 5 days along with the prednisone I was given.
After all of this, could this be Lyme even with the negative result?
Any help appreciated. Thank you all
Posted by lmedler (Member # 32429) on :
Also wanted to add that I have been having pain and weakness in my left arm with pins and needles feeling throughout my whole left side.
MRI of brain is clear
Posted by Lymetoo (Member # 743) on :
yes, very normal to have to wait... get on the cancellation list.. you could be called within weeks.
the ELISA is a positive .. that means you have Lyme. Unless you were tested thru Igenex Lab for the Western Blot, I would not worry about only band 23 showing up. The other labs are not that good at finding lyme.
If you were recently bitten, then DEMAND antibiotics right now. Your life and health depend upon it.
Posted by lmedler (Member # 32429) on :
sorry, thanks. Posted elsewhere Posted by elkielover80 (Member # 28368) on :
I would second that statement... if the ELISA was positive than you have Lyme. The tests are so often a false negative but if it's positive, it's positive.
There is NO WAY you should have been on prednisone while having Lyme. Prednisone is a steroid that suppresses the immune system. It weakens the system that you need to fight this bacteria!
There's also a lot to understand when starting abx treatment with Lyme. An experienced llmd would have explained this, most GP's don't know about it.
When you start an abx, it begins to kill the bacteria. The bacteria are full of toxins, and these tonxins then spill out into your body as the bacteria die.
This causes your symptoms to worsen. 3 days after starting abx is a very common time to start feeling that increase in symptoms.
Also, as your body is trying to process all the toxins, die-off/bacteria skeletal remains, medincines, supplements, etc... the filtering systems get backed up (ie. liver, kidneys, lymphatic system...) this is called a herxheimer reaction, or you'll hear a lot of people refer to it as a "herx".
The herx is typically far worse than the baseline symptoms. But it means the abx are killing the bacteria! Most people get worse before they get better while treating with abx.
A lot of people, myself included, have great results with detoxing. Drinking water, supplements to support the immune, lymph system and vital organs, mild exercise are a few ideas. These help the body flush the toxins out quicker so you feel less of the herx.
I'm sure others can add a LOT more intelligent info but this is my experience. I would definitely recommend getting yourself to an LLMD and get back on those abx!
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