IgM Western Blot **34 Indeterminate **39 Indeterminate **41 +
Here are my symptoms:
Neck stiffness and pain
sensitivity to light and sound
Changes in taste
Mood swings
Hard time sleeping
Burning sensation in face and side of head
Tingling in the hands, irritated by cold
Concentration issues
Short term memory issues
Fatigue
Hormone tests show hormone levels are wrong
Burning sensations in the left arm and shoulder
Unexplained weight gain
Pain behind eyes
Swelling around left eye
Left eye closes faster than right eye
Frequent urination
I tested positive for Epstein Barr
Sensitivity to heat/cold
Swollen lymph node in neck in Feb 08
Low platelet count
Swelling above my ears as if my jaw muscles are inflamed
Right shoulder swelling and pain, comes and goes
Low body temperature 97.7 degrees
Tooth pain on right side both lower and upper jaw
Pressure in head
Left side below ribcage pain, rare but very intense
High sensitivity to diesel exhaust
I am on abx currently, here is my log since starting:
June 20 Sat: started taking abx at night
June 21 Sun: bloating in the evening
June 22 Mon: bloating all day, facial swelling, joint pain in my left pointer finger
June 23 Tue: bloating is gone, but really bad headache, neck pain, confusion
June 24 Wed: good day
June 25 Thr: mild headache, neck pain, confusion
June 26 Fri: good day, evening had depression
June 27 Sat: didn't sleep well, lots of joint pain, knees, shoulder, elbow, ankle, noticable swelling in right hand pointer finger, headache, facial swelling, left side pain
June 28 Sun: ok day, fatigue
June 29 Mon: knee joint pain
June 30 Tues: Major Allergies running nose and sneezing
July 1 Wed: good day
July 2 Thr: right ankle pain, major head pressure, confusion, fatigue.
July 3 Fri: 3 hour nap, left knee pain extending half way down shin, feels like swelling in front and below knee
July 4 Sat: good day
July 5 Sun: overall soreness
July 6 Mon: good day
July 7 Tues: left knee pain
July 8 Wed: left knee pain, overall soreness & left hand mild pain. Evening, right leg pain, bloating, overall soreness
July 9 Thr: good day
July 10 Fri: good day
July 11 Sat: facial swelling, headache, neck pain, temple swelling
Any input would be greatly appreciated.
[ 07-12-2009, 01:16 PM: Message edited by: lymetime ]
Posted by bettyg (Member # 6147) on :
lymetime,
it would help us if you DELETED THE NOS. SHOWING "NEGATIVES" ....
show only the + and INDetermined only ok
just click on pencil, 3rd box to right of your name at top and delete them please.
print off dr. c's explanation of western blot posted by lymetoo at top of MEDICAL. circle the + and IND numbers that showed; that will explain more to you what you have.
your symptoms ... i have all/majority of them; i can't scroll up to view them.
you have lyme...noticed the 41 positive on both
time for but you know now how to find info you want to know about ok!
read also at top of medical SYMPTOMS LISTS for lyme and regular co-infections ok!!
Posted by gemofnj (Member # 15551) on :
looks like lyme to me. IND are considered weak positive and you are having lyme symptoms.
it is very common for lyme symptoms to migrate to other joints and wax and wane.
if you can, print this document for future use and reference.
it has a great source of information regarding diagnosis, treatment and prognosis of lyme. it was compiled by the USA's top lyme doctor.
do you have a lyme literate doctor? if not, i would get an appointment asap. the longer you wait the longer it is to treat.
Posted by Pinelady (Member # 18524) on :
If you are asking if you have Lyme, I say yes. If you are asking if symptoms appropriate,
Yes-especially body temp. I don't know your treatment.
Posted by timaca (Member # 6911) on :
I would suggest you check into EBV instead of lyme. Here is some info on EBV:
# Patients with "high" antibody titers against HHV-6 IgG ≥ 640, EBV VCA IgG ≥ 640 and detectable EA Ab at 1:160 or HHV-6 IgG ≥ 320 if EBV VCA IgG ≥ 1280 and has detectable EA Ab at 1:160 (measured by the average of a minimum of two time points obtained during screening at least 3 weeks apart).
You can also view two videos about EBV infection on the HHV-6 website...www.hhv-6foundation.org: There is a link on the home page:
"View videos from the Symposium on Viruses in CFS"
Best, Timaca
Posted by disturbedme (Member # 12346) on :
Looks like lyme to me, especially with your symptoms, etc.
Find an LLMD ASAP.
Posted by lymetime (Member # 21054) on :
Thank you for all your help. I edited the post as requested. The information you guys provide is very helpful in working with the drs.
I did test high for evb in April of 08. I probably did have ebv back then as I think my immune system was low from lyme.
I was diagnosed with ebv first, based on the time gone by/symptoms the drs don't think its ebv. I just don't have any of the symptoms.
I must be missing something regarding ebv, is there something that makes you think its ebv? I have looked really hard at ebv and I just don't see it. Please explain what I am missing.
Thank you.
Posted by lymetime (Member # 21054) on :
I am on doxy and azithro and responding well. At the bottom of my first post, I included my log of symptoms after taking abx.
I am having more and more good days.
I still don't understand why I have swelling above my ears.
Posted by timaca (Member # 6911) on :
If you are having more and more good days on antibiotics, that is good and likely indicates a bacterial infection of some kind. I still don't think it's lyme based on your lab results.
With regard to EBV...if you want to check into that...first know that you CANNOT tell the difference between a chronic viral and a chronic bacterial infection. The symptoms you listed could be EBV as well as lyme (as well as Cpn, enterovirus, HHV-6 etc).
Cpn responds to doxy and azith. Have you been tested for that?
You can get a copy of your EBV test and see if it matches up with the article I posted.
Timaca
Posted by nenet (Member # 13174) on :
quote:Originally posted by lymetime:
I still don't understand why I have swelling above my ears.
I have this sometimes. In my case I believe it is inflammation and swelling of the blood vessels and nerve bundles in that area (there is a large grouping of nerves and blood vessels in that area).
Sometimes it will also be near the base of my skull on either side, and at my temples. It might be vasculitis, which can be a common symptom of Lyme.
It can be VERY painful. Sometimes it would hurt so badly when touched I couldn't wash those spots very well when shamppoing. This symptom has gone down and become far less frequent with antibiotic tratement.
As for your original question, Lyme is a clinical diagnosis, but your lab results are also suspicious for Lyme. Even the CDC warns that Doctors should diagnose by clinical symptoms, history, and exclusion, rather than with testing. They know how bad the tests for Lyme are right now. They miss a LOT of real cases of Lyme.
Good luck in continuing your treatment. Remember that ILADS guidelines suggest treating for at least 3 months after the last symptom has disappeared. This increases your chances of not relapsing.
Posted by lymetime (Member # 21054) on :
will ebv show up as joint swelling/pain?
I am not sure what cpn is?
thanks for the help.
Posted by nenet (Member # 13174) on :
By the way, I have high titers for EBV that began after my Lyme Disease progressed. Before I went really downhill but was having various symptoms like joint pain and swelling, muscle pain, fatigue, weakness, cognitive decline, flu-like symptoms, etc., I was tested for EBV, and my levels were normal. At that time I was misdiagnosed with Fibromyalgia and Rheumatoid Arthritis.
Since then, I was tested for and diagnosed with Lyme, and also tested for EBV again. My titers were through the roof. From all that I have read, it appears as you suspected, that EBV and other viruses are able to take hold again once Lyme has depleted your immune system.
I do plan to retest my EBV levels soon to see if the antibiotic therapy is keeping the Lyme in check enough to give my body a chance to fight the EBV.
Posted by nenet (Member # 13174) on :
I forgot to answer you other question. Cpn is Chlamydia Pneumoniae.
I highly recommend that you read "Dr. C's Western Blot Explanation"
It will help explain to you what the results of your test mean. One way to look at an "Indeterminate" band is that each band is a fingerprint. If there is even a tiny bit of it, it is still the same fingerprint.
Bands 34 and 39 are highly specific for Lyme. 34 was so specific it was used to make the Lyme vaccine. 39 is species-specific.
Check out that whole thread - it's a must-read.
Posted by timaca (Member # 6911) on :
Yes, EBV can show up with joint pain. So can Cpn (Chlamydia pneumonia) see: www.cpnhelp.org
FYI, Dr. F from Columbia throws out all IND bands from Ignenex. He does not count them at all.
You want to test for then treat what shows up obviously wrong. Otherwise you can throw good money treating something that isn't there. And take a lot longer to get well.
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but you know now how to find info you want to know about ok!