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Posted 12/6/2013 11:30 PM (GMT -5)
Hello Folks!
Just two days ago I think I may have finally found the cause of all the medical problems that have affected me for 9 years. I found a Lyme-Literate doctor who finally ran the Western Blott (IgM/IgG) test I had been asking my other doctors for (for years and years). He told me I was positive for Lyme Disease. I don't know how you all feel about the possibility of chronic Lyme infection, but I have to admit, I cried a little when he told me he thought he knew what was going on, that I wasn't crazy or over-reacting, and that he thought he could help me. Finally, even if Lyme is not the cause of all my health problems, at least I have some hope! :-)

Anyway, I started an antibiotic trifecta (Doxy-, Azith-, & Plaquenil) 1 month ago and I think I'm Herxing, but I can't say for sure. I just wanted to say howdy, make some friends, and learn a few things here! Thanks folks! smilewinkgrin
Posted 12/6/2013 11:37 PM (GMT -5)
hi there knitsforsanity. welcome to the lymelights. I am sorry you have to bear this burden and we will be glad to share what we know with you. I just was diagnosed in october and I am on azithromycin and rifampin. had to stop rifampin temporarily due to elevated live enzymes. then I found out I have 3 tooth abcesses and alveolar necrosis in my lower jaw. I have been whammed lately.

I am so glad you found out what was wrong. I too suffered for at least 10 yrs and did know what was wrong. jackie
Posted 12/6/2013 11:56 PM (GMT -5)
Welcome knits, glad you gound someone to try and help you. Curious what were you IgM and IgG results that LLMD diagnosed Lyme? I'm still tryig to get a dx so I look to others results to see if their results are close to mine.

My IGenex test results were
IgM 31, 34, 41 were IND and 83-93 '+'
IgG 41'+'

CD57 Abs 55

I hope you finally can move forward with your health. I have also been fighting this mystery illness for about 8 years. It has taken so much but still need to fight to try and get my life back. I feel I am losing, missing so much.

You have found a good place with people who 'get it', who hae walked it and probably have the t-shirt.

How long until you started herxing? Did it take a month? I was on Biaxin for 10 days and I was kinda sadly hoping for a herx reaction but I could not really tell I was already feeling poorly but it seemed I was more achy and joints / muscles hurt more. Just not sure if I was on long enough to cause the herx people describe having if one tryely has Lyme (I was hoping the short usage of Biaxin for sinus infection would clue me in on my Lyme status). Sounds like I need to be on longer maybe.

How long has your LLMD been treating lyme patients? Anyone ever ask what their success rate is?

I understand the 'crying' when you feel you have finally been heard, believed, and possibly have a glimmer of hope. Please stay in touch. I may be on the same path behind you a short distance. I cat get into the LLMD until February.
Posted 12/7/2013 2:14 AM (GMT -5)
Hi and welcome to the group. You came to the right place for help and support.

I'm sorry your diagnoses took so long, It seems you found a decent doctor to help you now.

I got teary eyed when I watched the documentary "Under Our Skin" shortly after my daughter was diagnosed. I was thinking she could end up as bad as some in the movie, but after learning more about Lyme, I calmed down.

I hope you find the help you need to move ahead. You can learn a lot here.
Posted 12/7/2013 11:47 AM (GMT -5)
Hello Knits!

Welcome! I'm sorry you are sick, but I am glad you were able to find us.

You could definitely be herxing.

Have you checked out the thread at the top of the page that says "New To Lyme? Start Here!" ?

Keep posting, okay? We are here for you and will help you get through this.
Posted 12/7/2013 12:09 PM (GMT -5)
Oh no, Roxie!! You mean I have to have a T-shirt too?!?! smhair Giggle!!


Welcome to our community Knitsforsanity!!

I can so relate to all the emotions that you and other have expressed so far! It's crazy to think that we can have an infection for years and years and have no one even believe us when we say 'something's not right'.

I too would like to encourage you to read through our "New to Lyme?" thread as it's packed with much needed information for your healing journey. It's got symptoms lists - as Lyme rarely gets passed alone - and detoxing instructions (very important to healing), links to important articles, and other sites that we felt would be helpful.

We are here to help you find information, understand some of the things that are going on with your body, give you a shoulder to lean on - or cry on if you need it! We can listen to you whine when you 'just have to' (LOL! I've done a whole lot of whining over the years on this forum!! :-)) or even have a little bit of a rant over something stupid that was said to you by someone.

And the best part? You have all of us to pull experience from and to lean on! You can use the search function on this site to search older posts to help you find even more information.
Posted 12/8/2013 1:26 PM (GMT -5)
Wow!! You guys are so awesome!! Thanks so much for all the hello's and encouragement! I'm so glad I found this forum, I think it will be very helpful >:D<

mystery1, I'm so sorry to hear about your troubles! It seems like you were diagnosed around the same time as I decided to finally seek out an LLD. I hope you can find some relief very soon!

Roxie60, my Igenex testing seems even less clear than yours! I only had IgM 41 indeterminate, 83-93 positive, and IgG 41 positive. My LLD began treating me even before the results came back though, because my of my clinical symptoms, history of tick exposure, and worsening neurologic problems. He showed me a graph from a 2002 research paper indicating that the discovery of antibodies 83-93 is highly diagnostic of Lyme Disease. What are the CD and Abs tests?

I hope that I'm Herxing at this point - about 5 weeks into treatment - because I feel really bad. I feel like I've been in a car crash. 0.o I was in the ER last weekend for a 3-day migraine that would not quit, so we'll see where the rest of this crazy road takes me. :-)
Posted 12/8/2013 1:51 PM (GMT -5)
5 weeks of treatment does put you right where many start herxing. Be sure you are doing all you can to detox and rest.

Roxie was talking about a test known as the "CD 57". This test measures the amount of a specific cell (known as "Natural Killer Cells") that are in your body. Although not a sure thing, when the counts are quite low, it can be one more sign that a person is dealing with chronic Lyme disease. Although some with severe chronic Lyme have high counts of CD57, so like I said, it's not a "sure thing" - only one more tool that can be used to help determine what stage you may be in.
Posted 12/8/2013 4:00 PM (GMT -5)
Howdy Knitsforsanity!!

Welcome to our safe haven! I love the 'keep calm and knit on' :-)

MarieLS
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