posted
I'm new here. I've only posted one or two times and I greatly appreciate all the information you all have provided thus far. I'm not yet sure that I have Lyme and am waiting for test results, the Western Blot to confirm.
My ND ordered the test for me, but only after doing my own research and after struggling for 3+ years with debilitating fatigue and pain.
I don't guess anyone thought of it because there are no classic markers for lyme, but this is an attempt to find out *SOMETHING*. Not assuming lyme dx will make me feel ANY better, but at least it would point to something.
I have depression, cycling fatigue, ezcema, psoriasis, cycling sore throat, arthritis, numbing arms and fingers, eye twitching, muscle twitching, stiff neck and ......... did I mention FATIGUE?!? Also, my hormones are crazy low, thyroid is in normal range, but low functioning.
Anyway...my ND did order the Western Blot for me on my request, but it's going through Quest Diagnostics. I just have a bad feeling about it, but waiting the results is driving me NUTS! Wondering what I will do, depending on the results and trying to not "keep my hopes up" for a dx. It seems crazy that I would *hope* they find something. But, years of suffering and misunderstandings has been so painful.
Anyway...here's to hopes my ND actually has some wisdom and the lab, discernment.
Had it done last thurs. should find out this week, don't ya' think? thanks.
Posts: 42 | From St. Louis, MO | Registered: Aug 2010
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Did you have the blood drawn on last Thursday? If so, the labs may not be the most accurate. Most Quest labs send out their lyme tests. Where was yours sent? Was the blood sample shipped overnight express? And would the lab perform the tests on Friday, rather than wait until the next week? If they wait, the chances are less for accuracy.
Also keep in mind that Quest will not do the full range of bands, so their tests are not complete. Still, it's a place to begin.
You will find some answers, soon but it may be a process.
Good luck.
=========================
With thanks to Robin123 for finding this at CanLyme:
(27) REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR -
Posts: 48021 | From Tree House | Registered: Jul 2007
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Tiredmama, i hate to say this but even if your test came back positive, there's a huge chance your ND wouldn't treat you correctly anyway.
And take it from me, incorrect treatment (too short/too mild) will not hlep you feel better in the long run.
Please, consider going to "seeking a doctor" and ask for referals for an LLMD near you. An LLMD (lyme literate medical doctor) should be ILADS (International lyme and disease society) trained and will know how to treat you correctly to get you BETTER!
Many LLMDs have a long waitlist, so please make an appointment with one as soon as you can.
Lyme disease needs to be clinically diagnosed, and no one is better equipped to make a correct diagnosis than an LLMD.
Believe me, I pulled a tick off me, got a bull's eye and symptoms starting 3 days later. I tested negative 3 different times and no doctor would treat me or treated me too short/too mild.
It took me 9 months to find this site, find an LLMD, and now I'm feeling better than last year and am on my way to recovery! I have learned the hard way that it's not worth the time, money and frustration to see anyone but an LLMD.
Wishing the best for you!
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
I understand how you feel. I actually burst into tears at the news that i had a positive ELISA. It all finally made sense. My round peg in a round hole! Others have given you good advice that i cant expand on. Just sending you a hug and wishing you the best!
Posts: 624 | From Oklahoma | Registered: Jun 2010
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posted
Thanks, all. Just wondering, since I don't have a time/date to go back to when "everything changed"....this has been very slowly progressing over years.
Do I pursue it further, spending all that money to "get the dx I want"? Lyme does pull it all together, but what if it's REALLY NOT THAT? Would Dr. C in MO tell me that? I have their # and will make an appt, but we are short on funds.
My ND has really let me lead on this so far and I think if I brought in print outs and websites for her to read, they may do whatever I ask. But, I second-guess my knowledge and want support and someone to take care of me.
Anyway. I did read (after the fact) that I should've gone at the beginning of the week and kicked myself several times over for not asking all those questions about how/when/where it's processed. I've no idea.
So...my question. Despite having been dx'd with psoriatic arthritis, finding out I have low estrogen & progesterone and candida...would you still go to an LLMD after getting a negative result?
Thanks, so much everyone!
Posts: 42 | From St. Louis, MO | Registered: Aug 2010
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BoxerMom
Frequent Contributor (1K+ posts)
Member # 25251
posted
I would RUN to an LLMD after my negative Quest labs and spend my last penny to be accurately diagnosed and appropriately treated.
All of your symptoms point to Lyme. Lyme messes with our endocrine systems. We all have hormonal irregularities caused by Lyme.
You can chase diagnoses and treatments for years. Most of us have. And we've all ended up in Lyme treatment.
If you end up ruling out Lyme with the appropriate testing, you can go from there. But you need to know. And the vast, vast majority of patients with your symptoms end up treating for Lyme.
It will change your life to be accurately diagnosed. Please go to an LLMD.
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You mentioned taking a list to your ND in hopes of help. If your ND is not lyme literate, sorry, but that won't help a lot. Lyme is very complex and it takes a lot of education for any doctor to get up to speed enough to treat. Basic support may still work but, to treat lyme, you would need someone who has training and experience.
I don't think a ND can prescribe antibiotics in Missouri. You would need an expert LL MD or LL ND who is ILADS-educated and has successfully treated at least hundreds of other patients. Each patient is different and requires a bit of a different protocol, depending upon what infections are present.
Lyme rarely travels alone and you would also need to be assessed for other tick-borne infections. That is done first by a clinical evaluation with history and symptom discussion with an experienced LL doctor who can prescribe pharmaceuticals.
If the ND in your state cannot prescribe pharmaceuticals, support measures are still necessary and you may consider that - with the LLMD's guidance.
[ 08-22-2010, 02:15 AM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Lyme Disease is a "clinical" diagnosis. So yes, even if the test comes back negative, I would run to a LLMD. A good LLMD will diagnose Lyme based on the patients symptoms and history.
Many of us started treating for lyme based on a clinical diagnosis and with a negative test. Sometimes after a few months of treatment the test will then come back positive and back up the clinical diagnosis.
In my opinion if a person is ill with lyme like symptoms, and nothing has shown up in any test, then lyme is a very likely possibility.
I would rather treat and see what happens, than to not treat and see what happens.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
I think it is worth the money and effort to pursue getting the most accurate diagnosis possible. Having the right test processed by IgenX and interpreted by a LLMD along with a visit to the LLMD for consideration of your symptoms and possibly a clinical diagnosis is a good way to decide if you are infected. In my case years of agony and physical & mental deterioration could have been averted had I known how to be properly evaluated for Lyme sooner.
Posts: 212 | From San Francisco Bay Area, California | Registered: Aug 2010
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posted
A positive Lyme test can tell you that you have it, but a negative one means nothing.
All your symptoms sound like ones that Lyme can cause.
Lyme has to be clinically diagnosed by an expert who has enough experience to interpret your symptoms and history. The ONLY person I would allow to tell me I DIDN'T have Lyme would be an LLMD. No other doctors are qualified to do that.
Meanwhile, if you DO have Lyme, which is likely given your description, you need to see the LLMD for correct treatment as soon as possible. Other doctors will not give you the right treatment. Some doctors will not give you ANY treatment, or would look right at your bullseye rash, tick in a jar, Western Blot with 10 positive bands, and typical Lyme symptoms, and still tell you it couldn't possibly be Lyme, or if it was, then it's cured now.
I was very confused before I got to my LLMD. After I saw him, it became instantly clear that he actually knew all about this and knew what he was talking about, took my word and my symptoms seriously, and knew what to do to help me.
After that I was sure that my formerly trusted family doctor, who laughed at me and said I couldn't possibly have Lyme, and paid no attention to my story about a tick bite, was simply wrong.
-------------------- Don't forget to laugh! And when you're going through hell, keep going!
Bitten 5/25/2009 in Perry County, Indiana. Diagnosed by LLMD 12/2/2009. Posts: 756 | From Inside the tunnel | Registered: Jan 2010
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