posted
Hello! This is my first post. What a nice group here.
Living in Connecticut has caught up with me. Elisa done in August was negative. I insisted on IGeneX.
My IGeneX results: IgM: 18 + *31 IND *41 IND 66 ++
IgG: 41 IND
My doctor dismissed me as negative and said I was fine. IGeneX said negative as well since I didn't have *positives on 31, 41. My understanding is that I should interpret IND as a positive? Would you guys consider this positive?
There is that one article online (quoting Dr J I think?) that says if you have a positive 18 it's Lyme. But I don't see that anywhere else.
Stuff has been going on since March (maybe longer?). Mostly neurological. Feel a little alone because I don't have what many of you have such as achy joints and extreme fatigue.
My symptoms are not extreme which I am grateful for, but they are there. Had a "flu" in March with a fever, no congestion - was very tired and achy for a week - didn't feel great for 6 weeks afterwards. Could have been a regular flu, of course. After 6 weeks I felt like I recovered.
Most all that I describe below comes and goes.
In May I noticed some really mild twitches in my hands. Heart palpitations if I reclined in a chair. Then larger muscles in my legs would twitch. Wasn't sleeping well. A few facial twitches. Palpitations subsided for the most part after 3 weeks.
Most pronounced symptom which really frightened me was a feeling of "vibration" in my muscles. First started in my arms, then legs and back. Comes and goes. Feels like I'm shaking internally...anyone get this?
Extreme anxiety and a terrible panic attack in August. Doctor dismissed everything blaming it on anxiety and put me on Zoloft (which did help with the anxiety after 5 weeks).
Numbness on my scalp (although I'm not truly numb, it feels like it); when I wash my hair it's like I can't feel my head on top and at the base of my neck. Numbness on top of my left hand, arches of my feet. Ears have been clogged/cracking for a long time (probably a year now) - ears never clear up. Slight buzzing in one ear, can hear it at night when it's quiet.
In the last month I have typing "dyslexia" or something - I'm on the computer for a living and type all the time. Seems the wrong word gets typed all the time now even though in my mind I am trying to type something else.
I could go on but those are the highlights.
First doc ditched me, said it was out of his area of expertise - I definitely seemed to know more than he did about Lyme. Funny since he is treating patients in the heart of a Lyme disease area. My other doc at the office (who I like better anyway) gave me 3 weeks of Doxy.
Been on Doxy for a week now - some things are a little better; I have a good day, then back to the symptoms again... Vibrations are really starting up again, sigh.
Doc wants me on Doxy for 3 weeks, then I go in and see him. I'm thinking I should be on abx much longer than that. I'm afraid he will give me a hard time. I don't want to relapse and fight this forever.
Thoughts on if my "negative" is Lyme? How long to treat? Any input is appreciated.
~ megan
Posts: 257 | From Connecticut | Registered: Oct 2007
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Considering your symptoms, where you live, and THAT western blot, I'd say a consult with an LLMD is in order.
I'd be MIGHTY surprised to see you NOT dx'd with lyme!!
Here's what Dr. C says about your blot:
"The significant antibodies, in my opinion, are the 18, 23-25, 28, 30, 31, 34, 39, 58, 66 and 93.
Your "indeterminate" bands seem mighty tell-tale. I'm betting they would turn positive quickly.
Find an LLMD!! Post in "Seeking a doctor."
Good luck!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
1) Get an LLMD 2) Get tested for coinfections 3) Get CD57 tested
With the IND on 31 alone, that is enough to question that Lyme is in fact the issue - unless you were vaccinated for Lyme which can effect 31.
There is also a confirmatory test that IGeneX does on bands 30/31 to ensure that it is not the result of a viral cross-reaction.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
I never had the achey joints or extreme fatigue either and I was just barely considered positive for Lyme on a Western blot (was negative on 4 ELISA tests). Your symptoms are not uncommon for Lyme and the longer left inappropriately treated, the more likely you may develop 'classis LYme' symptoms.
Definitely get to a LLMD...antibiotics for a few months will hopefully give you the right answer.
Posts: 561 | From mass | Registered: Jul 2007
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posted
Thanks for all your advice. I've done lots of reading but I'm an engineer not a doctor so I struggle to understand all this.
What else would cause a positive 18 band and IND on 31? Other bacteria or a virus? Just trying to understand what the other explanations might be so I don't go to my doctor misinformed.
I will ask to be tested for coinfections. IGeneX, as you know, is expensive so I didn't have that done initially as I was paying out of pocket.
Does Quest do ok with co-infection testing? Or are they bad with that, too. That would be covered by my insurance.
thanks!
Posts: 257 | From Connecticut | Registered: Oct 2007
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posted
See if your Doctor will give you one more week of Doxy and then retest for lyme after about a ten day wait. the Doxy may increase the results from ind to +
Posts: 219 | From Aubur,Al. USA | Registered: Oct 2004
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
With a positive Lyme-specific band and the number of symptoms you have, I would seek an LLMD ... you NEED one!
There is a big political battle going on regarding the treatment of Lyme .... you can learn a lot about this and general Lyme info on www.ilads.org ... check out faq's.
Please go to an LLMD so you can be properly treated and tested for coinfections.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
Wow Megan! Your story and symptoms are practically the SAME as mine- I was amazed reading your post. My Igenex Blot showed more positive and IND bangs than yours did but was still NEGATTIVE on Igg and Igm by CDC and Igenex criteria. I posted my results if you are curious and want to do a search. There have also been prior threads on this board on this internal vibrations symptom.
I too had a mysterious flu-like illness in march without any respiratory issues or congestion and a low grade fever and fatigue. My main frightening symptom was these weird internal vibrations or buzzing too! They started in the left side of my face and scalp but then spread to other parts of my body over time.
In July I got 3 weeks of doxy (200mg daily)inspite of negative tests from a regular doc for lyme because I was tested for everything on else on earth and was thinking that may be it. Then I got an Igenex test and got to an LLMD. The LLMD put me on a higher dose of doxy (400mg daily is correct for lyme) ran a lot of tests and found a several other coinfections.
Like you, joint paint or any pain for thas matter is not a problem for me (I did have stiff neck a few times for several days) - I think the treatment staved off this symptom. My main symptoms are neurological, including these vibrations you describe. Also some brain fog. I also had more fatigue as time went on but it was not so much at first. I worked through the summer and was pretty active. Now I am on medical leave from grad school and am taking it easy to treat.
So in my case with a VERY similar story and symptom picture to yours it WAS lyme. And your WB did show lyme bands. I would get yourself to an LLMD ASAP or prolong doxy at the very least until you do. It's not something you want to play around with and unless you don't tolerate abx or are allergic prolonging doxy won't kill you.
I would DEFINITELY fight hard as you put it and pursue this avenue further just because your story is so similar to mine. If it is lyme, time to treatment is critical to chances of complete recovery.
Get tested for coinfections too at a good lyme lab as that may confirm your diagnosis if they find any (in my case I did not know what a tick was, never recalled a bite or rash).
Anyway- hope this helps you and good luck. Welcome to the board. PM me if you have any questions.
posted
By the way- don't waste time or money with coinfection testing at Quest or Labcorp. I highly recommend Fry Laboratories for coinfection testing- do a search on this board.
In my experience it is better than Igenex testing for coinfections. I have had complete coinfection panels done at both Igenex and Fry labs within three weeks of eachother.
I also had tests for some coinfections done at LabCorp (not at all useful). -Despin
Posts: 163 | From Cleveland, OH | Registered: Sep 2007
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other doctors will not treat you with enough, and you will get sicker and could get permanent damage. even if you have several bands and it was positive, many doctors will still not treat with more than 28 days of doxy.
Posts: 615 | From maryland | Registered: Oct 2007
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Do you know the name of that Igenex confirmatory test on the 30/31 bands? How did you find out about it? Thanks.
Posts: 31 | From USA | Registered: Mar 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Welcome to LymeNet!
I'd much rather have first met you in the "I eat chocolate all day and it is good for me Club" than here, of course.. but since this is it... guess it will have to do!
You said... "Does Quest do ok with co-infection testing? Or are they bad with that, too. That would be covered by my insurance."
I would try Quest for the Bartonella Antibody Panel, Babesiosis and Ehrlichiosis. The Quest test for Bart seems to be able to pick up a number of cases... so might as well.
Looks like folks here did an excellent job responding to your questions... so do heed their advise so we don't end up as long time pals.
NOT that I don't care to have you hanging around.. it is just that the more we can send on their merry way... the better.
And keep up the good work researching. You seem quite knowledgable on the topic.
posted
Thank you all very much!! Am enjoying the site and learning a lot. Nice to know I'm not the only one "vibrating"!!
~megan
Posts: 257 | From Connecticut | Registered: Oct 2007
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daise
Unregistered
posted
Hi Webmeg,
I tested negative for Lyme three times by western blot. Insurance companies like blood tests and I was in danger of being denied Lyme treatment. However, a CD57 test saved me! It showed chronic Lyme disease and I'm getting my antibiotics.
My CD57 came from LabCorp in Dallas.
IGENIX tests for ehrlichia, bartonella and babesiosis didn't turn-up anything.
I've been doing antibiotics for over a year. But I suspect co-infections. My LLMD has been considering this, too. I keep hearing that Fry testing is good, however my insurance doesn't cover it and the bottom of my pockets won't allow it!
Most conventional docs attitide vs. LLMD's is the result of the IDSA / ILADS battle. That's why most conventional docs will "beat you up!"
IDSA is all about big money profits: their souls are owned.
ILADS is about helping very ill patients--and medical research.
Keep pursuing ... keep on .. keep on ... and never give up. OK?
posted
Hi Meg, everything the same, and then some. But I was so interested to see your typing comment. That's what happened to me, but never heard anyone else say it before. Suddenly making huge numbers of errors, transposing everything, had previously been a letter-perfect, rapid-keyboarding pro! I never even mentioned this symptom to my docs, since I couldn't take any more dismissiveness, arrogance, or downright ridicule. But it was one of the ways I REALLY knew something bad was happening!
onthemend
Posts: 314 | From east coast | Registered: Oct 2007
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posted
Meg- Your symptoms are scary similar to mine! Please listen to everyone's advice- see an real LLMD!
I totally have the vibrations, but they come & go: for me more during ovulation and periods, so pay attention.. Also, I feel like I have had the flu now for almost 1 year..tiny breaks here and there. Since I started Doxy, I now have huge joint problems, but am still fighting...Hang in there and Good Luck! Laura
Posts: 232 | From MN | Registered: Jul 2007
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