Changes in taste (I like hot mustard, etc which I hated before)
mood swings
hard time sleeping
tingling in the hands (left hand/arm is all the time, right arm is rare)
concentration issues
short term memory issues
fatigue
hormone tests show hormone levels are wrong
hypoglycemia
burning sensations in the left arm and shoulder
unexplained weight gain (I have gained about 20 pounds)
pain behind eyes
swelling around left eye
left eye closes faster than right eye
frequent urination
feeling as if I am losing my mind sometimes
I tested positive for Epstein Barr
sensitivity to heat/cold
swollen lymph node in neck in Feb 08
low platelet count (June 08)
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)
I was bitten by a tick in June of 07, These symptoms really started to show up in Feb of 2008 and have lingered and changed as time has gone on. I was tested negative for Lyme disease via a blood test.
Thoughts?
[ 06-14-2009, 11:41 PM: Message edited by: jhiggins ]
Posts: 20 | From California | Registered: Jun 2009
| IP: Logged |
The Elisa screening test misses 35% and is unreliable. The Western Blot misses up to 50% and 20-30% of patients with acute culture-proven Lyme disease remain seronegative on Western Blot testing.
I would suggest you obtain a copy of the test from your doctor. They will provide a copy upon request. Doctors will report you had a negative result by CDC standards which, is for surveillance criteria and misleading.
No Lyme test is 100% accurate. If you receive a negative result you are supposed to get retested with a specialty lab (like Igenix) who tests with ALL IgM bands.
You have Lyme like symptoms.
Make an appointment with a LLMD (Lyme Literate Medical Doctor) and confirm diagnosis or rule it out. It is still early - if you have Lyme you can get well with the proper treatment.
Post in the "seeking doctor" forum for a LLMD in your area.
While you wait for your appointment. Read up on Lyme disease. You will need to educate yourself. Post your test result here. Many people are experienced and can help you interput your result.
Best Wishes and Good Luck, -p
Posts: 641 | From So. CA | Registered: May 2008
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
Your symptoms certainly sound like Lyme.
Remember, a Lyme disease test measures antibodies.
No antibodies, no positive test.
You could be crawling with Lyme and have a negative test.
I second the recommendation of finding a LLMD and going from there.
Especially with a known tick bite.
Welcome to the board.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
posted
Also, from what I have read, tests aren't even that accurate. Its more a clinical determination made by the dr correct?
Regardless of the testing, it sounds like if the dr makes the determination I should start taking medicine asap. What medicine is the best?
Thanks in advance. Jim
Posts: 20 | From California | Registered: Jun 2009
| IP: Logged |
Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Hi jhiggins,
Yes, your are correct. A Lyme diagnosis is firstly a clinical diagnosis.
I also think you are doing the right thing by ordering an Igenex test.
You may also want to consider testing for co-infections.
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
| IP: Logged |
bettyg
Unregistered
posted
JIM, you asked what tests are best.
go to top of medical & print off the post i made with excerpt from dr. burrascano's lyme guidelines;
better yet, i provided you in my welcome with the full link; print it all off and start reading it over & over; it will become your bible of getting into remission since you've had this longer than 2 months !! good luck.
IP: Logged |
I am from your neck of the woods. Lyme is becoming a real problem here. Just this week I was put into contact with a woman who just found out she has Lyme. And, last year a young guy who is in college and was CDC positive last spring.
Your symptoms are very similar to mine. I was diagnosed a little over a year ago, but have had it for 16 years and did not know it.
This definitely sounds like Lyme to me especially since you were bit in 2007.
You sound like you are doing the right things by talking to IGeneX and getting in touch with a LLMD. You can PM me if you want to talk as I live near you.
Good luck,
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
| IP: Logged |
posted
PS I would definitely order the co-infection panel when you order your IGeneX test kit. There are so many co-infections that can go along with Lyme.
PS the young college kid picked it up jogging through Bidwell Park.
-------------------- aka: Lyme Warrior
In order to do "real" science, you have to have a "real" conversation with nature.
Well Behaved Women Rarely Make History!
"Just Demand your Rights" Posts: 869 | From nor - cal | Registered: Apr 2008
| IP: Logged |
posted
Thanks for the replies. To add further info, I have had MRI/MRA with and without contrast in Feb of 08 and last week. Everything was clear except a low platelet count. I hope to get the PCR results back tomorrow afternoon and I will get the orginal lyme test report also and report here. Thanks for the help! Jim
Posts: 20 | From California | Registered: Jun 2009
| IP: Logged |
posted
A couple of other things: swelling in my right shoulder that comes and goes swelling above my ears as if my jaw muscles are inflamed.
Posts: 20 | From California | Registered: Jun 2009
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Welcome, but sorry you're in this situation.
The sensitivity to light and sound strikes a major bell. As is sensitivity to heat/cold. But, really, I've had all the symptoms you list - and the pattern - and those are very common to lyme/TBD (tick-borne disease).
With the history of the tick, I'd say it is vital that you consult a LLMD not just for evaluation of lyme but also of other tick-borne infections.
Since you say you are planning to call a LLMD I will not post all the articles that explain why that is important but focus more on some of the treatment considerations you may want to study.
The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
Chronic Lyme Disease and Co-infections: Clinical Overview
Rebecca Snow, MS, Rh (AHG), CNS, LDN
===================
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
From Melanie Reber -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
Sorry, I just couldn't leave out stuff to help explain the political atmosphere.
These links explain WHY you need an ILADS doctor.
Whether LLMD or LL ND (naturopathic doctor), it is vital that they are ILADS-educated, Even if their treatment plan varies (and it should be individualized, anyway), an ILADS educated doctor will know the science of the spirochete, etc. Most IDSA doctors do not have a working knowledge of the sprirochete's forms, shapes and cycles nor do they consider the many other tick borne infections - or the toxic load that the patient carries.
Most ILADS doctors (but not all) also understand the value of supportive supplements, especially to help your liver. Most IDSA doctors are not familiar with that, even though the main liver support (Milk Thistle) has many medical articles about its protective benefits.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" -(author's details at link)
As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
Meet the players
The opponents in the battle over the diagnosis and treatment of Lyme disease are the Infectious Diseases Society of America (IDSA), the largest national organization of general infectious disease specialists, (and)
and the International Lyme and Associated Diseases Society (ILADS), an organization made up of physicians from many specialties. ( www.ilads.org )
ILADS, by contrast, asserts that the illness is much more common than reported, underdiagnosed, easier to contract than previously believed, difficult to diagnose through commercial blood tests, and difficult to treat, (especially)
especially when treatment is delayed because of commonly encountered diagnostic difficulties ( http://www.ilads.org/guidelines.html - Accessed April 6, 2007).
. . .
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
- Full article at link above, containing MUCH more detailed information.
It is a tape of a great show on lyme disease done by a Boston TV station a few months ago.
When you get to the site, select the link to view the show. The show was taped by a girl on LymeNet and she put it on-line for all of us to be able to view it.
You will learn a lot about the medical controversy surrounding lyme disease and why it is so hard to find a doctor who knows how to cure a person of lyme disease.
posted
another symptom that I didn' realize until now. I have low body temperature... 97.7
Posts: 20 | From California | Registered: Jun 2009
| IP: Logged |
posted
my jaw isn't actually sore so much as there is swelling above my ears. Its as if my jaw muscles are inflamed if that makes any sense whatsoever.
When I bite down, I can feel the muscle flex and that is where I can feel the swelling...
weird..
Posts: 20 | From California | Registered: Jun 2009
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
posted
jhiggins~ You mentioned a positive EBV test. EBV could also be causing all your problems, as could other viruses such as HHV-6 and enterovirus.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
I had 2 cat scans for the abdominal pain. Felt like
it was ripping my guts out. Thought I
had gallstones. Found nothing. Of course it was all
in my head. If you have had one neg. test I would
ask your LLMD you plan on seeing if a challenge is
in order. The jaw symptom is right on too. As well as everything else.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
| IP: Logged |
posted
You could have yeast over growth. I had the same symtoms. I started taking threeLac.
I quit all sugers gluton carbs now I feel great.
Shame it took so many years to figure it out.So much suffering for nothing.I was going to a doctor but I found the cure here at lymenet.
Posts: 5 | From Wisconsin | Registered: Feb 2009
| IP: Logged |
The criteria he used is: 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).
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
posted
ok pcr was negative, from what I understand that doesn't mean much. Also, I am starting to get knee pain that comes and goes.
Some of my symptoms don't relate to epstein barr but every symptom points to lyme. I have gone back and located the point in my life when everything went wrong. I had a tick bite, after that my straight As went to Cs, I had major pain in my joints especially my knees, my food likes completely changed. Its taken a long time to put everything together, the sad part it happened over 20 years ago. Things just haven't been exactly right since then. I may have had epstein barr but 16 months is a long time and normally epstein barr doesn't normally impact the nervous system.
I have a meeting with a LLMD this week, I hope the results are good.
Posts: 20 | From California | Registered: Jun 2009
| IP: Logged |
timaca
Frequent Contributor (1K+ posts)
Member # 6911
You cannot tell by symptoms whether you have a chronic viral or a chronic bacterial infection. The symptoms are the same.
It is possible to have both a chronic viral and a chronic bacterial infection. My best advice is test for a number of pathogens and treat what looks most obviously wrong.
Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Check the symptom list for parasites and worms at www.humaworm.com
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
bettyg
Unregistered
posted
jim, i see you have gotten all sorts on good info since i was last here ... good!
IP: Logged |
posted
i just read from a well respected lyme doctor that many people with lyme witll test positive on the ebv titer. i did.
i had symptoms, had a quest elisa test come back positive. the western block negative.
finally spent the money on the igenex as my symptoms got worse.
my igenex results were positive lyme:
IGM 18++ 30++ 34++ 41+ 58++ IGG 39+ 41++
get the igenex test!!
good luck, hope you feel better!
-------------------- rjf Posts: 62 | From pt pleasant nj | Registered: May 2009
| IP: Logged |
nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
Almost everyone will have evidence of past infection with EBV. It has been theorized that EBV and other infections will reactivate when Lyme (and also other tick-borne infections) cause the immune system to be taxed and/or suppressed.
That has happened in my case - I have both Lyme (antibody to the DNA at band 39 for example) and EBV (in very high titers).
Some people treat their EBV and/or other viral infections with antivirals, but I am using the approach that as I treat the Lyme and co-infections (lie Bartonella), my immune system will recover and address the EBV again.
I hope that you have a successful appointment with your LLMD. Your story sound remarkably like mine, only I didn't get the joint (and other) pains for over 2 decades. Lyme and coinfections can definitely cause different symptoms at different times.
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
Printer-friendly view of this topic