Question about my Lyme test results

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brock
New Member


Date Joined May 2009
Total Posts : 1
   Posted 5/11/2009 7:47 PM (GMT -7)   
ok so over the past couple of weeks i have been experiencing a recurring low grade fever, chills, nightsweats / sweating a lot very easily during the day, somewhat swolen lymph nodes in my throat, tender throat, increased allergy/sinuses, and a lot of fatigue. I've been outside in the woods a lot lately and I noticed a knot on the back of my neck under the skin one day. I did some research and learned these are all symptoms of lyme disease, so I went to get tested, but when i got my results back today I tested positive for one test and negative for another, so my doctor said I didn't have it. Should I trust this information? the nurse claimed i tested positive for the initial test, but I needed to test higher than a 5 on another one, but didn't. Should I still be concerned? I have not found a tick on me, but I do live in Georgia where it is very humid and like I said before I have been going in the woods lately.... also i have been feeling much better these past few days, but i started getting sick soon after that knot showed up a few weeks ago, then i got better, then sick again, but worse. :/

Post Edited (brock) : 5/12/2009 8:10:10 AM (GMT-6)


jl3625
New Member


Date Joined May 2009
Total Posts : 9
   Posted 5/11/2009 8:09 PM (GMT -7)   
I am by no means an expert on lymes..as I am a newbie.  But, I would def. look more into it.  Don't just take that one doctors advice.  I'm sure there are others on here that could tell you a whole lot more than I just did. 

RottenDog
Veteran Member


Date Joined Apr 2009
Total Posts : 1013
   Posted 5/11/2009 8:15 PM (GMT -7)   
guess i would be 1 of them, as of now my PCP say i have lymes the ID said maybe but rule out MS first, and the nero is iffy at best. they doing every test under the sun and not 1 has a answer for me, but like everyone here keeps telling me, do ot give up fight its all we can do.

I wish you all the best.

RD

veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 5/11/2009 8:41 PM (GMT -7)   
The fact that you tested positive in any way is significant. People with severe lyme can test negative. lyme is very elusive to testing. It probably indicated that you were recently infected. people with chronic lyme usually test negative from a blood test because the bacteria moves out of the blood and into the tissues. there are so mamy reasons why and how the bb bacteria hides from our immune system and from tests. We are primarily diagnosed by symptoms. And even infectios disease docs dont really believe in chronic lyme. get your self to a lyme doc now if you didnt already.
In the begining there was no Lyme. And the line is faded not showing where it came in. I became a new Mother and my Lyme decided to show itself. They said my blood tests were normal nothing was wrong. My swollen elephant like knee and finger and the unbelieveable back pain was just low vitamin D. I had a butterfly rash years before. When I told the rheumatologist I had the butterfly rash he said a key sentence. A butterfly rash is only present in lupus or Lyme disease. Well lupus pain is not in the back. i finally realized all the warning signs I had before. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. Now I pressed on. To a Lyme doc, after a nice run around and a lot of there is nothing wrong with you and a recomendation to counceling, He said Veronica this is Lyme and I am going to treat you. Now he knows and I know, Lets get it on paper. Getting the Flow Cytometry test. What kept me pressing on in the face of such amazing and eye opening adversidy is the baby! I had Lyme while I was pregnant Luckily I know I was not infected while pregnant. She is 19 months now and healthy. I am watching her with an eagle eye. God Bless everyone. Love Veronica.
P.S We are the ones who know about Lyme not the doctors. Isnt that just mad. Backwards . Alice in wonderland.


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 5/12/2009 5:47 AM (GMT -7)   
Brock,

Did you get a copy of your results? If not, try to get one and post your results here so we can help you figure it out. Do you remember what lab your doctor used to test for Lyme. Most doctors in the south don't believe there is Lyme here and most don't know how to interpret the results. That's why you need to see a Lyme Literate Doctor. I live in Louisiana by the way.
2003 symptoms started with very intense panic attacks and anxiety. Also had sound and smell sensitivities. Was in and out of the hospital from 2003-2005. Diagnosed with panic disorder.
2007 found an LLMD and was diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence. Muscle pain, joint pain, floaters, stiff neck, rib pain, slow thinking, brain fog, etc...
2009 went back to see LLMD. Diagnosed again with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start (starting slow and working my way up, Mepron(babesia), Ultram(muscle/joint pain), Thyro Complex 60mg(Thyroid), Probiotics ,Caproyl(intestinal candidas),Psyllium Powder(intestinal cleansing support),Bentonite Magma(absorbent aid for intestinal detoxification)
-Plus a ton of other supplements

Post Edited (CajunGrl) : 5/12/2009 9:31:44 AM (GMT-6)


Weary1
Regular Member


Date Joined Oct 2006
Total Posts : 127
   Posted 5/12/2009 5:57 AM (GMT -7)   
What test was used? If any bands show up it is significant to look further. Have you looked into IGENEX western blot? They note right on their tests that ANY of the significant bands (**) even IND is important to look further at.

Two of my children had "negative results" but significant bands and were diagnosed and are being treated by an LLMD...and getting better.
www.chicagolyme.com
 
"Greater things are yet to come and greater things are still to be done in this city" - Chris Tomlin
 


pj1954
Regular Member


Date Joined Feb 2008
Total Posts : 57
   Posted 5/12/2009 8:42 AM (GMT -7)   
there are lots of lymies in the chicago area im in southwest suburbs ! 

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 5/12/2009 12:24 PM (GMT -7)   
Brock, if this is possibly a new infection, it would be urgent for you to get on Abx asap. If properly hit at the beginning of the infection, you have a much better chance of not ending up w/ the chronic, resistence infection.

I am not a Dr, the info is what I am passing on regarding what I have learned/read about Lyme infection.

gotlyme
Regular Member


Date Joined May 2009
Total Posts : 21
   Posted 5/12/2009 12:37 PM (GMT -7)   
Brock, I would see another dr to get tested again. With all I have been through if I had a chance to stop it when it started I would have jumped on that opportunity. I would think a doctor with a brain would see your symptoms and treat you accordingly. There are other things that need antibiotics, maybe one of those things are least fit your symptoms. ;)

Good luck. But please don't hesitate, every day you wait makes it much harder to treat and I wouldn't wish chronic lyme on anyone.

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 5/13/2009 5:30 PM (GMT -7)   
Gracie's Mom said: "IDSA guidelines which have proven dangerous, debilitating and even deadly for many infected people...these IDSA guidelines where recently found fraudulent by the CT Attorney General and that includes the AAN. "

GM, If I ever end up w/ a 'positive' test (vs Quest's), and Quest goes by guidelines named above (reading bands that have no significance and ignoring many that do), I will consult an attorney. This is very grave business and I don't have the money to be jacked around.

Thanks for your info.
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