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» LymeNet Flash » Questions and Discussion » Medical Questions » I may have Lyme--advice?

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Author Topic: I may have Lyme--advice?
ralphi
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Hi everyone! I am new here, but wanted to check in and say hello. If this is the wrong place to post, I apologise!

My GP did a titer test last week and we're waiting for results. Basically I have felt awful for about a month now with no medical explanation. Doctors keep suggesting that it is a mental health issue, since anxiety and fatigue have been a large part of my symptoms, but I went to a psychologist who said I appear to be a positive and well-adjusted person. I am hoping the titer comes back positive, so my GP will start me on some antibiotics. Otherwise, I fear she will give up on me and recommend antidepressants and pain medicines.

I have not been bitten by a tick, so far as I know, but I've been bitten by mosquitoes and biting flies a lot this summer (I spend a LOT of time outside--used to be quite active), and on one or two occasions, found a tick crawling on me. No rash, either, but I have 17 out of the 25 symptoms listed on the ILADS website. The symptoms came on very suddenly (within a day or so) five weeks ago, and have gotten a little worse (added symptoms every week or two). The joint and muscle pain has only come in the last few weeks, so at the beginning my symptoms were VERY vague. Some days are better, others, not so much. I have had to take a LOA from work, though, because my brain does not work well.

I'm having my parents check out a LLMD in their state, who is also supposed to be very good with difficult casees, so hopefully I can get in to see him and at least find a cause for my symptoms!

I'd love any info or advice about what tests to ask for, etc. Also, if you had vague symptoms at the outset such as anxiety, fatigue, or nausea, how did you get doctors to take you seriously?

Thanks so much!

ralphi

Posts: 330 | From TN | Registered: Sep 2011  |  IP: Logged | Report this post to a Moderator
MichaelTampa
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I personally have never had any luck with the "GETTING doctors to take me seriously" part, and for me, and I think many, it is all about "FINDING doctors who will take me seriously". Some just will not, and precious time and money can be wasted on them.

Seems like a very good next step for you is to seek out an LLMD, and sounds like you're doing that. Chances are the titer will be negative, even if it is lyme disease that you have.

If you want to get tested with good tests before seeing an LLMD (such as, because it is a long wait for an appointment), IGeneX is a popular lab. They can do an ELISA as well as a better western blot than the standard labs do. They also can test for coinfections like babesia, bartonella, ehrlichia, although the money adds up quickly, and I personally don't think those extra tests are worth it in most cases, as so many docs go by symptoms anyway.

Welcome!

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bcb1200
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Ralphi...my worst symptoms were anxiety and fatigue. My tests were negative from my original PCP and I never recall having a tick bite, nor did I have the rash.

But I did have lyme as my LLMD tested me through IGENEX and I was positive.

Suggest you find an LLMD and read Dr. Burrascano's guidelines posted at the top of the Medical section.

--------------------
Bite date ?
2/10 symptoms began
5/10 dx'd, after 3 months numerous test and doctors

IgM Igenex +/CDC +
+ 23/25, 30, 31, 34, 41, 83/93

Currently on:

Currently at around 80% +/- most days.

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Lymetoo
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Yes, be sure to read Dr B's guidelines. More important info here:

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/88555

Igenex testing:

www.igenex.com .. Test #188 and 189

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94524 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
ralphi
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Thanks, both of you! BCC, I knew I wasn't suddenly going crazy! I have three other health issues (spine surgery last year, and two endocrine issues), so I think doctors assume "hypochondriac" in someone as young as I am.

I will check out IGENEX right away. Looking for an LLMD too. I know that if the titer is neg my GP will dismiss. And I'm sure they just use whatever lab is cheapest...

Posts: 330 | From TN | Registered: Sep 2011  |  IP: Logged | Report this post to a Moderator
ralphi
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Do you go through a doctor to get the IGENEX test? Wonder if my doc would play. Also, no prices are listed?
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Lymetoo
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The test is around $200. You call Igenex and ask for a test kit. They will send it to you for free. Then you take it to a doctor for them to sign off on it. Then get the blood drawn.

Do it early in the week... Monday or Tuesday so the blood doesn't sit around in the post office.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94524 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
ralphi
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That's not bad! Now to find a doc who will sign the form.... Thanks for helping the newbie out ;-)
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Lymetoo
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You're welcome! Some chiropractors will sign it!

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94524 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
timaca
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Check out this website, especially the infections link: http://chronicfatigue.stanford.edu/

Best, Timaca

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Matayl4
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Has anyone ever gotten a negative test result from iGenex? I heard all of their testing comes back positive - is this true?
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Lymetoo
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Not true. IDSA doctors spread that myth.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 94524 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
t9im
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Its amazing there is a controversy to this insidious disease and Ive found it easiest to show a couple of u tube videos on the controversy.

http://www.youtube.com/watch?v=PVPRWiukp_M

http://www.youtube.com/watch?v=8yk0C-uX9cU

If you watch this video you can see some of the miss diagnosis.

http://www.youtube.com/watch?v=3nIuIF6q8FA&feature=related

http://www.youtube.com/watch?v=V-lHDA863TM&feature=related

Dr. Bs Advanced Topics in Lyme disease.

http://researchednutritionals.com/FactSheets/Burrascano's%20Advanced%20Topics%20in%20Lyme%20Disease%20_12_17_08.pdf

I assume your having the elisa done which has a 35% or greater false negative rate. If you are positive they will then do a Western Blot. Ask the MD to request the band readings in advance.

Stony Brook, Igenex and Cologen provide the band readings and also include bands 31 and 34 which are specific to lyme but excluded from the CDC standard (Steere and his Lymrex vaccine).

--------------------
Tim

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t9im
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Hi Matayl4:

The Lyme cartel has tried to discredit Igenex as they were being used by so many. I can attest from my daughers 4 times with Igenex, all negative, that they do not always come back positive.

At best my daughter has had 3 positive band readings but 34 was positive on IgM and only Indeterminate on IgG where she had positive 30 and 41 readings. So still negative by Igenex standards.

--------------------
Tim

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ralphi
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Thanks for the info, Tim! My docs are all beginning to give up on me, and you all have given me hope that someone can help. I talked with a friend the other day whose dad has suffered for years with lyme-like symptoms (bell's palsy at the beginning and all). He's going to get tested soon, too.

I had no idea before this week how politicized Lyme is. So weird.

Yes, I think it's the ELISA. I'm really hoping for a positive so I can start some kind of antibiotics. Otherwise, I'll probably have to wait until I find an LLMD.

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momcap
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I also do not recall ever having a tick bite or circular rash. My symptoms were vague, to the point that I had no idea I had lyme disease. I even convinced myself that I was a hypochondriac. Fast forward 15 years and my oldest child is really sick - severe psych problems, chronic pain, joint swelling, rashes, fevers, etc. It took HIS illness for me to find out about lyme and discover that's what I had. My Western Blot is positive by both IGeneX standards and CDC standards. I unknowingly had lyme for 15+ years and now all 3 of my kids are infected.

IGeneX has a broader criteria so more people are positive on their tests. As stated, they report bands along with the general "positive/negative", so even if you are negative you have some information to go on with the bands. I spent a small fortune on testing with them, and later went to the LLMD who said to just get the IGeneX Lyme Western Blot IgM & IgG. I would have saved a lot of money if I had just done that. My naturopath ordered the test for me, since the family doctor thought I had gone off the deep end. I came back with positive tests and he was suddenly interested. Now he is supportive. You never know.

Best advice I got - get yourself to an LLMD A.S.A.P. and make sure he/she is ILADS recommended. Good luck to you!

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Lymetoo
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momcap... Very sorry about your children. [group hug]

And you're right.. just get the WB IgG and IgM!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Susie R
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I never had a rash, and don't recall a tick bite or even a tick!

I also have had spine surgery---TWO operations, for spinal stenosis due to arthritic changes in the verterbrae. I now have fusions from C3 to C7.

I would echo the other good advice you've gotten and not waste time with non LL MDs. Get a good doc and go from there.

Susie

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sickofsick
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Don't trust the lyme titres! They have never been positive for us. Strongest results were actually a single reactive band 23 on Quest Western Blot. Subsequent Igenix was negative, with a couple other bands showing up.

My daughter was diagnosed clinically, based on symptoms and the lyme specific band 23.

Also, many of us have been told it's anxiety, or some other psychological issue. They want to send you away with antidepressants. Be careful.

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ralphi
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Thanks to everyone who has commented so far! I feel very welcomed and have learned a lot already.
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ralphi
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Yay! I have an appointment with Dr. F in NC in a couple of weeks. She had some very good reviews and I am thrilled that she has an appt so soon. Little worried about the long drive (7 hours one way!) and the cost...but going to make a 3- or 4-day trip out of it. There was a guy 4 hours closer, but had mixed reviews and seemed more "alternative" than "integrated."
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annxyzz
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Personally , until I found a doc , I would start protecting myself from bacterial replication with: grapefruit seed extract ( consider agricpt L or nutribiotic ) and samento from nutrimedix . I would also take artemesia annua drops from Herb Pharm , which probably helps with lyme and some coinfections.

--------------------
annxyzz

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