what do my test results mean?

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strwbrryblnd
New Member


Date Joined Jul 2009
Total Posts : 11
   Posted 7/15/2009 10:02 AM (GMT -6)   
lyme igm wb interp     positive
lyme icc/imb ab           0.92
lyme igg wb inter       negative
lyme ab inter., eia      equivocal
igm p41 ab                 present
igm p39 ab                 present
igm p23 ab                 present
 

strwbrryblnd
New Member


Date Joined Jul 2009
Total Posts : 11
   Posted 7/15/2009 10:15 AM (GMT -6)   
In addition... i have been treated for Fybro for 6 years now.  I am 38 yoa,  I now have high blood pressure and rapid pulse up to 153 when sleeping.  (per heart monitor results)  I have also had a CAT scan of the brain which shows swelling at the base of the brain and bilateral frontal lobe atrophy.  I have chronic migrains.  6 weeks straight with migrains and now having them about 4 times a week.  Difficulty sleeping.  My tick bites that I recall are over 20 years ago.  My doctor has run about every lab test there is  until last week when he decided to test for Lyme Disease and that is positive.  He is sending me to the Center for Disease Control and started me on Doxycycline 100 mgs 2x's per day for 14 days.  I have been searching for many years to find out what is wrong with me... I have even had Shingles 6 times within a 4 year period.  At some points of my care I have been taking over 320 pills a month.  Now that this test came back positive I dont know whether or not to be happy for the diagnosis or worried about the treatment.  I have never joined a forum before but I hope that someone can shed some light on what I am going through.  Thank you for your time.

tickedoff
Regular Member


Date Joined Jun 2009
Total Posts : 56
   Posted 7/15/2009 10:35 AM (GMT -6)   
Hi Strwbrryblnd,

Sorry to hear you have lyme but at least you now know the enemy and can begin fighting...am a new member also, my husband has lyme, and dr. suspects for 15 years...he also had a negative igg and 6 positive igm bands...dr. said combination of reasons for this...but he has surgery in 2/08 followed by steroid treatment that caused the lyme to "explode" presenting increased and new symptoms...are u sure your dr. is a lyme literate md? you will get some very good information and support from this forum from people more experience than i...please stay in touch.

strwbrryblnd
New Member


Date Joined Jul 2009
Total Posts : 11
   Posted 7/15/2009 10:51 AM (GMT -6)   
Tickedoff.. thank you for your reply.  My doctor is very good and likes alternative and biofeedback forms of treatment instead of just giving me more drugs.  He has been very persistant in testing me trying to help me make sense of my illness (which was diagnosed previously by another doctor as fybro)  He is not a lyme specific doctor but referring me to one.  I am just waiting for the call back on who and where I need to go. 
It sounds as your husband has been suffering for a long time as well.  Its hard to have a family member not understand what you go through.  He is lucky for you to participate in his well being.  Part of my family thinks a positive lyme disease result is a positive result.  They think that I will take a magic pill and be better and no big deal.  I am optimistic about a short term antibiotic treatment but the reality of it all may be different.  I am also wondering if the nerve damage and the damage to my heart is reversable or is the damage already done and may continue whether or not I get rid of the Lyme.  I will also continue to follow your post and hope the best for your husband.  wink

Stunned123
Regular Member


Date Joined Apr 2009
Total Posts : 114
   Posted 7/15/2009 11:06 AM (GMT -6)   
Hi and Welcome,
Your story sounds a lot like mine, I am 37 and the last tick bite that I recall was about 20 years ago, history of multiple tick bites as a child, and was never given antibiotics. The last 10 years have battled with neck/back and muscle pain and headaches. Was diagnosed as having Fibro. by an Infectious Disease Dr. even though I had continual High Lyme titers. I sought out an LLMD on my own, who just confirmed I have Lyme.

I know that I have had this for a long time and that it is going to take me awhile to eradicate it. But I am hopeful that I will. I think with the proper treatment, your symptoms will resolve. Just make sure that the Dr. you are referred to is a LLMD. I found out the hard way that a lot of Infectious Disease Doctors do not believe in Chronic Lyme. Again, welcome and I hope you get the answers you need.

Heather

tickedoff
Regular Member


Date Joined Jun 2009
Total Posts : 56
   Posted 7/15/2009 12:43 PM (GMT -6)   
Strwbrryblnd,

my husband was also diagnosed with fibro also in fall '08...which we accepted for few months...then i googled misdiagnosed fibro...LYME!!! and sent him to an accupuncturist who asked on the first visit after taking a medical history if he was ever tested for lyme...and so the story goes...you mentioned that your dr. is sending you to the center for disease control...from what i know, their guidelines do not acknowledge long-term, chronic lyme (if anyone else has more info on this please join in)...so please make sure you are seeing a LLMD...you can get some recommendations from the International Lyme and Associated Disease Society...i can also email you something i found on their site that you can share with your family and friends to get them lyme educated...before this experience with my husband we were both clueless, so try not to get upset, just try to give them as much info as you can...our friends and family are starting to really understand now and that is so important.

strwbrryblnd
New Member


Date Joined Jul 2009
Total Posts : 11
   Posted 7/15/2009 12:53 PM (GMT -6)   
Tickedoff,
Thank you for any webs you can help me with. marjorie@att.blackberry.net
I have a call into the Dr waiting for his info on a LLMD specialist so thank you for that. I googled Herx not knowing what it is.... This was important to be aware of. I have allergic reactions .. including pennicilan and ammoxycillan. I am very sensitive and have extreme reactions to most everything I take. If you dont mind.. how long have you been going through antibiotic treatments since the diagnosis. Are they working?

Really Lyme
Regular Member


Date Joined Jan 2007
Total Posts : 219
   Posted 7/15/2009 9:04 PM (GMT -6)   
Please see a Dr that knows and believes in Chronic Lyme. Your dose of doxy is not high enough it should be at least 400-600mg a day. And if you have had it for along time 14 days won't touch it.
 
I went a year being diagnosed with MS. I took alot of steroids during that time that turned my Lyme into super Lyme. It took about 2 years of antibiotics to get better. I stayed on them for another 2 years because I got pregnant and did not want to risk giving it to the baby. I stopped a few months ago and it came back with a vingence.
 
Now I have to start all over again. I think the body can heal itself sometimes. I had over 10 lesions on my brain and spine and after 90 days IV rocephen they had all healed. My Nuerologists were shocked, yet they still won't talk about Lyme Disease only MS.
 
I travel from Oregon to Conneticut to get my Antibiotics, because Drs here say I don't have Lyme. I have tested CDC positive 8 times. The Center of Disease control contacted me after about my 3rd positive test and told me I had Lyme. They couldn't believe My Dr wouldn't treat me. They called him and that got me 30 days of Doxy and that was it I was told I was all better and you still have MS.
 
You must be your own Advocate and fight. I was shocked about how many Drs don't know everything.
 
Finding Peace In This Crazy World !
 
Beth
 
FIRST POSITIVE LYME TEST IN NOVEMBER OF 2004
DX- WITH MS  APRIL OF 2005
DX- WITH LYME JULY OF 2006
FINALLY TREATED FOR LYME JANUARY 2007


strwbrryblnd
New Member


Date Joined Jul 2009
Total Posts : 11
   Posted 7/15/2009 9:24 PM (GMT -6)   
Yes I do... I always blamed it on the medications. I forget what I'm saying in middle of conversations. I spend alot of time looking for things although when I put them up I make a mental note..."ok.. i have put this here" but within a day I cant remember and it takes days for me to remember. I will be looking through my purse for 20 minutes when my mother will ask ..."do you remember what you are looking for?" But more annoying is that I know what I'm going to say in my head but different words come out of my mouth. Is this what your talking about lymekiller?

strwbrryblnd
New Member


Date Joined Jul 2009
Total Posts : 11
   Posted 7/15/2009 9:29 PM (GMT -6)   
Really Lyme,
I sent an email to the Dr I am supposed to see on Aug 3 and advsd her of my concerns... she is on the board of directors for University of FL infectious disease. I basically told her that if her involvement was not in true dedication for resolving Lyme disease that I didnt want to waste her time or mine. My primary who I love very much for finally testing me is very open to my thoughts and suggestions... I will call his nurse and suggest a higher dosage until I can get to LLMD. Thank you!!!

+Lyme
Veteran Member


Date Joined Apr 2009
Total Posts : 1304
   Posted 7/15/2009 9:40 PM (GMT -6)   
Strawberry,

I relate to all your cognitive stuff, but what has embarrassed me the most is what you said here, "But more annoying is that I know what I'm going to say in my head but different words come out of my mouth."

It's really scaring me now, because at work I have to discuss stuff w/ attorneys, defendents (just misdemeanor stuff, but I gotta be right!). As I'm trying to talk to someone about something, I hear dumb stuff come out of my mouth, and it's stuff that's really stupid.


Suspect TBI in 1972.  Attacked tonsils (recurring high fevers, constant low grade fevers, chronic tonsillitis) , pregnancy (miscarraige), appendix, heart (mitral valve prolapse), hypoglycemia, depression, chronic acute neck and back pain.  

Next suspect Mother's Day 2007.  Diagnosed w/ Lyme and Bart June 2009. (awaiting more test results)

In treatment for recurrent depression, anxiety, low thyroid.

Bit again 7/1/2009, began Doxy 200 mg /day

Post Edited (+Lyme) : 7/15/2009 10:27:47 PM (GMT-6)


strwbrryblnd
New Member


Date Joined Jul 2009
Total Posts : 11
   Posted 7/15/2009 9:49 PM (GMT -6)   
Wow.. the response is so overwhelming.. all these years just dealing with the physical pain but the mental aspect is something that no one understands. ie... that's when the nuerologist puts a person on bipolar... I'm like... if you were walking in my shoes... you'd be a bit on edge too.
I was the youngest person ever to be hired in Jax for the police dept. I ranked 6 out ofr over 360 candidates. I never thought I was smart... just common sense... but lately I doubt my intelect.

As far as the dreams go... I never hit deep sleep. The most I sleep is 2 hours. At one point I was taking 9 pills to go to bed and was still awake 3 hours later. But in the last few months I have had extreme night terrors waking up screaming. I never had them before.

strwbrryblnd
New Member


Date Joined Jul 2009
Total Posts : 11
   Posted 7/15/2009 10:07 PM (GMT -6)   
I tend to be overactive in my mind... its hard to turn it off. I may have times when I dont think but to me thats a blessing. Are you not able to think when you need to?

strwbrryblnd
New Member


Date Joined Jul 2009
Total Posts : 11
   Posted 7/15/2009 10:19 PM (GMT -6)   
now that I'm thinking about it... at work...in my enviroment i deal with uppermanagement and updating info... i look at the monitor and i know what i'm supposed to do but i get stuck... and they end up telling me "do this or that"... i know the answer and am embarrassed that they dont give me a chance to do it...but i am very defensive and try not to snap at them and just laugh it off with them.. they know at times i am in great pain and heavily medicated and fortunatly they all know that i have what i call "brain farts"
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