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LLMD in CT..Please help, I think I have Lyme, but not sure..

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Posted 8/23/2013 12:30 PM (GMT -5)
Hi! I'm new to this whole forum thing, but I've read a couple postings and I hope you guys can help me...

Basically, I've been having some body/muscle aches since last year (I'm only 26 years old), and it's only been recently, about the past 3 months that I've had worsening symptoms. The first time I had an "episode" was in May; I remember waking up in the middle of the night feeling really hot and sweating but then I would be cold 10 minutes later. This happened about 3 more times that night. The next morning, I woke up with horrible vertigo and feeling sick to my stomach. The vertigo went away 2 days later but the sick feeling stayed for about 4 days.

My second episode happened in June, but this time I had more body/muscle aches, nausea, sweats and chills, insomnia, and this weird tingling feeling that started in the back of my neck and went down to my arms and fingers. The body aches and sick feeling made it so hard for me to get out of bed that I didn't even want to eat, so I ended up losing 5 pounds that week :(

Anyways, I went to so many doctors because they didn't know what it could be...I went to my primary doctor (who said it was just a bad case of vertigo), a GI doctor (who performed an endoscopy on me b/c he thought I could have an ucler/bacteria), an inner doctor (I was having earaches and a little bit of vision blur when I got up in the morning), and even the emergency room but everything came back NEGATIVE. I did have 2 Lyme tests done and even a tick panel for Babesia, Erhlinca, etc. The first lyme test came back with a weak positive, but when they did the confirmatory, it showed no bands. The second test also came back negative for Lyme, Bab, and Erh., however, I'm not sure if they sent it out to do a confirmatory.

Sorry for this long post, but I'm not sure what to do now. I'm starting to get another episode, so I'm thinking I should get my Lyme done one more time..Does this seem like Lyme disease?
Posted 8/24/2013 7:12 AM (GMT -5)
Hi,

I'm in CT too and I can give you the name of a doc my sister and her kids have used with great success, Dr. M. I did not opt to see him (yet) because he does not take insurance, in the meantime I have found an excellent naturopath whom I trust and have been seeing for a couple of weeks.

I'm new to the forum and there are others who know much much more, but your symptoms do sound like Lyme to me. Lyme can be a tricky thing to test for with the run of the mill bloodwork, and there are false negatives for sure.

If I can give you any advice, I'd say be proactive about this, especially if you haven't started to have neurological symptoms. Perhaps you can save yourself some very serious issues down the road. And also - listen to your instincts. My MD told me time and time again that nothing was wrong, I was just anemic, etc... for months, while Lyme was wreaking havoc in my system untreated.

I'll stay tuned to hear if others chime in with recommendations for CT LLMD's. Best of luck to you.

Post Edited By Moderator (opugirl) : 8/24/2013 6:32:35 AM (GMT-6)

Posted 8/24/2013 7:32 AM (GMT -5)
Whoops, I fear I may have erred by posting a name, seems like I should have messaged you. Apologies to the group if I broke a forum rule...
Posted 8/24/2013 7:35 AM (GMT -5)
Hi Sunny,

That is alright - I fixed it! We have to protect our precious doctors! I have the name saved however!CT girl if you could activate your email in your profile other members (including me!) can email you some names. I'll also send you the name that sunny personally suggested. Or you could also click on my name and send me an email - just tell me what area you are looking for!

~beth
Posted 8/24/2013 8:56 AM (GMT -5)
Good chance you have Lyme and Babesia based on your symptoms and positive ELISA test. The confirmatory test is a Western Blot which should be done at a specialty lab for better accuracy namely IGenex labs.

Sweats and chills suggest Babesia but that's difficult to test for as they're are many strains. IGenex has one of the better tests called the FISH test but the LLMD will probably just treat you for it based on your symptoms.
Posted 8/24/2013 10:26 AM (GMT -5)
Thank you Beth. And interesting to hear what you have to say ToddPaul about sweats and chills & babesia. I have had recent episodes where goosebumps just ravage my body in waves, and I've been sweating a lot as well. I'll ask my doc about this when I see her Monday.
Posted 8/24/2013 12:19 PM (GMT -5)
Hi Sunny_1,
It would be great if you could email the doctor's name, cause I'm not sure if my primary doc will be able to help me. I just went back this morning to get a third lyme test done so I will have to wait to hear back from them. I definitely agree with you on the staying proactive part too! I have basically lost my respect for some doctors that automatically dismiss you once the results come back "normal" or "negative" =/ Did you test positive for Lyme?? Did you show any bands on the confirmatory?

Hi ToddPaul,
yea, the Elisa test was borderline positive but I don't know why the Western Blot was negative. I think they did all of my testing at Quest, not IGenex. The sweats and chills come randomly and I always check my temperature but I never run a fever (>100 degrees), so I'm not sure if it's Babesia.
Posted 8/24/2013 12:47 PM (GMT -5)
CTgirl222....I have the same symptoms as you have, just a quicker timeline....My chills, sweats and slight fevers occurred app. 6 weeks after I removed a tick from my leg....Feeling very fatigued, tired most of the time, floaters in my eyes, various electric type shocks, weakness and tingling sensations in my left arm from the elbow to my fingers.....Lack of appetite and feeling depressed a lot.....Been to the Family Dr 3 times and was given Doxy each for 1 week at a time since May....Little to NO relief....
Finally made an appointment with a LLMD and based on my symptoms and history, stated, " you probably have Lyme with Babesis".......Awaiting blood test results from Igenex.....
Posted 8/24/2013 1:43 PM (GMT -5)
Just emailed you.
Posted 8/24/2013 4:49 PM (GMT -5)
Hi mikeb2308,
Your symptoms sound a lot like mine, but I definitely had a lot more issues with the body/muscle aches and even if I tried to work out for 10 minutes, I would start to sweat like crazy. I've been to the gym before and it would take awhile for me to start sweating. I did remember getting bitten by something while I was asleep one night, but the bite did not look like the typical bulls-eye mark. How come your doctor only gave you a dose of doxy for 1 week? They usually have to give a month's worth of antibiotics straight. I'm not sure about your doctor, but mine said that my symptoms could be due to a post-infection from a virus like the flu :/ Honestly, I don't believe that..

Hi Sunny_1,
Thanks so much for the email, I still have to wait for my lab results before I figure out my next step. I feel like I'm trying to solve a mystery and so I am constantly looking for clues to put the pieces together. Do you know if chronic lyme can cause MS?? That's such a scary thought..
Posted 8/24/2013 5:18 PM (GMT -5)
Hi CT,

Fyi - I had the deer tick bite....with the EM rash (physician confirmed) years ago and then, and now I NEVER tested positive through labcorp. I did test Igenex positive but not CDC positive.


~beth
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