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owmyhead
New Member


Date Joined Aug 2009
Total Posts : 7
   Posted 8/14/2009 11:53 AM (GMT -7)   
I am looking for advice/opinions...  for the past 14 months I have had a non-stop, 24/7 headache.  I have been diagnosed with NDPH (new daily persistant headache) and am being treated by a neurologist.  Although I have tried many different treatment options and medications, nothing is working.  I was tested for Lyme by a standard lab test which came back negative.  Below are my symptoms:
 
about 6 months before my headache began I started having severe stomach problems.  I couldn't eat & if I did I would become very ill.  I had a colonoscopy done & eventually was told I just had IBS.  After a few months this went away. 
 
I also have joint pain in my knee & elbow (I am only 30).  Sometimes I have trouble remembering things but I am not sure if that is long term effects of all the meds I have tried... or something else.  I have read online about getting a Lyme test done through Igenex.  I sent away for the test kit and received it last week.  Does anyone have any experience with this or know what test I should get?  Does it even sound like Lyme to anyone?  I don't ever remember having a rash/ring but I have had plenty of ticks over the past years.  My family and I spend a lot of time camping and hiking in the woods. 
 
Any advice or comments would be GREATLY appreciated.  I am just looking for something to explain this constant pain. Thank you!! turn
 
Kim

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 8/14/2009 2:18 PM (GMT -7)   
Hi Kim,

I just wanted to welcome you to the board. I don't know what tests to check off for Igenex but I'm sure someone else will be around shortly to answer that for you.

If you have any other questions, please don't hesitate to ask:)
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


ttlittlestar
Regular Member


Date Joined Jul 2007
Total Posts : 296
   Posted 8/15/2009 7:13 AM (GMT -7)   
Sounds like Lyme is a possibility to me. More like a probability. It is worth going to an LLMD (Lyme Literate Medical Doctor). Lyme tests often show false negative. Plus, there are all the cooinfections... Babesia, Bartonella, etc. you can pick up from ticks as well.

Stunned123
Regular Member


Date Joined Apr 2009
Total Posts : 114
   Posted 8/15/2009 7:21 AM (GMT -7)   
Kim,
I too had/have almost daily headaches. My joint pain started in earnest in Feb. But I have had other symptoms for almost 10 years now. I was misdiagnosed with Fibromyalgia, before finding out it was actually Lyme. I too had multiple tick bites as a child, and was never given antibiotics, I too am in my 30's. Even though there are days where I feel 80.

Can you ask for a copy of your previous test? Just because they say it is negative, they are going by CDC guidelines. Most mainstream labs only test with 1 type of Lyme bacteria. My PCP's office told me my test was negative. Not until I saw my Ob/Gyn did she say your Lyme titer was high and you had bands present. I was shocked to say the least. Now, I ask for a copy of every lab I have drawn. It might not be Lyme, but it sure sounds like it could be, especially with your past history of tick bites. Good luck and keep us updated.

Heather

springsjean
Forum Moderator


Date Joined Mar 2009
Total Posts : 2154
   Posted 8/15/2009 5:07 PM (GMT -7)   
The daily headaches was one of my worst symptoms for three and a half years after never ever having headaches my whole life. Mine was like a tension band of pressure headache. It is hard to explain to people that you have a headache every single day but I did !! I also had sudden severe anxiety, tight jaw, stiff neck and numerous other symptoms. They (6+ drs.) blamed all of it on menopause. I even agreed to go on hormones to see if it helped. Even now after the headaches left for a few months with antibiotics they are back but I also have co-infection Erlichosis which one of the main symptoms is headaches. Hopefully once I treat for that they'll be gone for good. I have always been negative on lyme test (although lyme specific bands were positive) but was positive through Igenex for co-infection. I really feel for you and YES it sounds like lyme. Until you get to a dr. who knows lyme, you will not get better.

owmyhead
New Member


Date Joined Aug 2009
Total Posts : 7
   Posted 8/17/2009 7:52 AM (GMT -7)   
Thank you all for your responses!! I have been calling all morning trying to get an appointment with a LLMD. I am having a tough time! The ones that I have called either need a physician referral (which I don't have) or have 6-12 month wait. I was thinking about waiting to get the test until I went and saw a LLMD - I figured they might have a specific test that I will need. Also, do any LLMD submit to insurance companies? I did make an appointment with one (6 months from now) but they don't take insurance & it is $500 for the initial appointment! Does anyone know a physician that takes insurance that doesn't have such a long wait? At this point, I am willing to travel anywhere. Thanks again for all your help. I hope everyone has a pain-free day.

owmyhead
New Member


Date Joined Aug 2009
Total Posts : 7
   Posted 8/17/2009 8:17 AM (GMT -7)   
I just got my results back from my doctor - this was for the Western Blot that was done at Quest. My doctor said it is negative - below are the results. ANY help interperting would be appreciated!

18KD IGG Band negative
23KD IGG Band non-reactive
28KD IGG Band non-reactive
30KD IGG Band non-reactive
39KD IGG Band non-reactive
41KD IGG Band REACTIVE
45KD IGG Band non-reactive
58KD IGG Band non-reactive
66KD IGG Band non-reactive
93KD IGG Band non-reactive

EHRLICHIA CHAFFEENSIS

E.CHAFFEENSIS ABIGG <1:64
E.CHAFFEENSIS ABIGM <1:20

Does band 41 mean anything? I am trying to decide whether to still do the IGENEX testing because of my other symptoms. Thanks!

Stunned123
Regular Member


Date Joined Apr 2009
Total Posts : 114
   Posted 8/17/2009 9:32 AM (GMT -7)   
Hi,
I had my first WB done through Quest. The only band I had positive was 41kda, my Lyme Titer was high positive. Quest is not reliable for Lyme's testing. My LLMD feels they are fine for the co-infections, but not Lyme.

From what I researched when I first had my results, was band 41 is one of the first bands to show up. It is reactive for the flagella of the bacteria. I had an Infectious Disease Dr. who told me "everyone would have a 41 positive."

By no means, let that stop you from seeing an LLMD. Especially if your titer was positive.

Just a side note. My LLMD drew 2 WB on me sent to 2 different labs. I had different bands show up at each lab. The blood was drawn on the same day/same time. It just shows you how unreliable the labs are.
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