I am at a loss here- still not knowing what is wrong with me. But, going on over 4 years now of diagnosis' of IBS, TMJ, Fibro, ADD, and whatever else, I can't remember! Now, I have this terrible facial pain/numbness that doesn't go away-for over a year. I am terribly frustrated, and requested both a Lyme and Heavy Metals test be done, since I think those are the only 2 tests that have not been done. Tell me, what are your symptoms, and who disgnosed you. I have already received info on an LLMD. Thank you- and God Bless all of you, especially those living with chronic pain!
Posted by Pinelady (Member # 18524) on :
Lyme testing by some labs-may not find the antibodies. So if you test I would test with Igenex.
But if you do test with reg. lab. Always get copies, as many have been told neg. when they did
not have enough bands to say CDC positive or IDSA pos. When many doctors now believe because
of the poor antibody responses by some- If you have even one specific band with symptoms it
should be investigated further. As you may be one of those who requires a antibiotic challenge to
stimulate enough antibodies to be seen. I believe a LLMD would treat you just based on your
symptoms as they are common in Lyme. Best of Luck. Let us know how it goes.
Posted by f13girl (Member # 23844) on :
12 years ago... stiff neck, headaches back of head, tmj, body pain throughout, stiffness, anxiety, insomnia, brain fog--cut pain in 1/2 through low car diet- dr. diagnosed me as FMS. Got better (or so I thought) through exercise, diet, moducare sterinol immune supplement. 3.5 years ago -optic neuritis, major cognitive/brainfog, eye pain, coordination, foot drag ,twitching, jerking--neuro syptoms exploded with treatment into major multi month flares. My suggestion is to treat early with FMS -to avoid major neuro issues down the road like I now have.
Posted by kday (Member # 22234) on :
Oh boy, Bell's Palsy? Sounds like it could very well be Lyme.
More importantly, do you remember your first symptoms? I would rule out sarcoidosis if you haven't done that already.
Posted by BackinStOlaf (Member # 23725) on :
Started with heel pain and tingling of the extremities. Have brain fog, muscle and joint pain, migratory pain, occasional behind the eye pain, burning sensations, tinnitus, tmj
[ 02-08-2010, 03:35 PM: Message edited by: BackinStOlaf ]
Posted by canefan17 (Member # 22149) on :
There's not enough time in the day to remember all my symptoms lol
I'd say well over 50 common symptoms.
It got to the point where Docs would say what's the problem and I just handed them a piece of paper with all my symptoms.
I even rated in order of severity.
Posted by Hopeful2010 (Member # 22958) on :
My brain doesn't work. I told my doc if he can get it to work again that's all I care about. Everything else is minor compared to this.
Posted by Topaz (Member # 20216) on :
Flulike symptoms, muscle twitching, stiff and sore neck and shoulders, headache, fatigue, tinnitus, tmj, brain fog, sore joints in hands, numbness and tingling in arms and hands, transient hip and knee pain, general achiness, chills, anxiety, nausea, vertigo.
I'm sure there are more that have come and gone but the above are some that come to mind.
Posted by lyn8 (Member # 24356) on :
Symptoms, in order....1)couldn't sit still for long periods of time twitching, 2)months later knee problems, 3) when playing sport, could not breathe, face went numb, hands tingled. (went to ER) Was told it was asthma, then vocal cord dysfunction, then acid reflux. Ended up being lymes, several months later.......
Posted by drewby (Member # 15253) on :
Started out as just numbness on my left shoulder that didnt go away. It then progressed into numb Tingling face, lips, gums, constant lighteheadness, extreme fatigue, Neurally Mediated Hypotension, Sleep Apnea, floaters in eyes, TMJ, Anxiety, brain lesions....an a whole bunch more.
Posted by Beachinit (Member # 21040) on :
Arm pain, nausea, leg pain, anxiety, apprehension, easy distractibility,feelings of terror, sweat on top of head at night, TMJ pain,salivary gland swelling, dry mouth, muscle twitch, muscle cramps, muscle ache, migratory arthralgia, testicular pain, shin pain, pain on soles of feet, tingling sensations over any and all regions, neck and upper back ache merging with headache, at other times migraine like headache, Tire easily, memory problems, word search and name recall problems etc, etc. Easy to see why we would not want to tell our Dr. all this stuff for fear of being thought to be nut cases. Ha Ha . . . Never lose sense of humor.
Beachinit.
Posted by Keebler (Member # 12673) on :
- The question is not so much what are our symptoms but how you can get yours resolved.
This explains WHY you need an LLMD - an ILADS-educated or ILADS-member doctor so they have the required knowledge (even if they have their own methods).
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.
-----------
Co-infections (other tick-borne infections or TBD - tick-borne disease) are not discussed in this article due to space limits. Still, any LLMD you would see would know how to assess/treat if others are present.
See if you can borrow a copy of the book "Cure Unknown" from the group or your library.
Also see if they have a copy of the DVD documentary "UNDER OUR SKIN" or to go www.underourskin.com
=================
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:
Years of PAIN! From scalp to feet. Nerve pain, muscle pain, tendon pain...you name it. You can read my story at the link below under Author's Bio. I have had about 50 symptoms in all, pain being the most predominant. Others, stomach issues, anxiety, heart palps and the list goes on. You can also read ther Lyme patient stories located under the Stories link as well.
If you haven't been tested for LD, please get tested through Igenex. It is not normal for pain to go on that long and you have multiple sympotms - sounds very much like Lyme and co-infections.
Also check the Resources link - it will also help inform you and lead to other informational sites.
Take care.
Posted by linky123 (Member # 19974) on :
Hi Kmesh,
Woke up one day with the flu that never went away, the typical fibro sx.,awful fatigue, horrendous headaches, poor memory and concentration. Took 20 years to diagnosis.
The hardest part is getting a good diagnosis,and llmd; it sounds like you are on the right path. Then just be relentless in your pursuit of educating yourself. Don't be afraid to make waves and question the md if you have to.
We've been to four different mds along the way; that's AFTER being diagnosed. So every llmd is not a good fit for everyone. But they all have something to offer.
One thing I wish I'd learned sooner in the process is the importance of detox; heavy metals, parasites, dental problems ie; amalgam fillings, root canals gone bad. This helps the immune system deal with the disease.
A biological dentist can test and correct these for you. If you have amalgam fillings or root canals; it might be worth a check.
It sounds like a lot, but if you can remove some of the toxins along the way, your tx will go much smoother.
Also, some of the more unconventional tx. can work better for some folks. Some do better on the abx. You just have to see what works for you.
Lymenet has been the best resource for me; folks on this site, though sick themselves, take time out to help and advise others. Many are quite knowledgable.
Most will agree that Igenix is the best lab for the testing of lyme disease.
Best wishes and keep us posted as to your progress.
Posted by kmesh (Member # 24309) on :
our hospital uses a company called Quest for their lab work- we'll see what it says. As I read many of all your symptoms, I say to myself "yep, that's me". UGH! it's just been a long waiting game............... What is FMS?
It's too bad soooo many of the signs and syptoms are the same as so many other things. Makes me wonder how many people are actually out there walking around with Lyme!
Posted by LightAtTheEnd (Member # 24065) on :
The CDC itself states that 90% of Lyme cases are not reported to them, and the CDC likes conservative estimates.
Posted by LightAtTheEnd (Member # 24065) on :
PS, I had two Western Blots from Quest that came back "negative" but had one positive band, kd41.
I had a Western Blot from Igenex, blood drawn the same day as the second Quest test, and had two positive bands and one indeterminate (which means slightly positive).
That test was labeled "negative" too, but the indeterminate band was one specific to Lyme, so that's enough evidence for me that my tick bite that led to Lyme-like symptoms did indeed give me Lyme.
Posted by btmb03 (Member # 18394) on :
FMS = Fibromyalgia Syndrome
Posted by Keebler (Member # 12673) on :
- and Fibromyalgia Syndrome usually = undiagnosed chronic stealth infection (often lyme or other tick-borne disease) -
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by kmesh: 1.our hospital uses a company called Quest for their lab work- we'll see what it says. As I read many of all your symptoms, I say to myself "yep, that's me". UGH! it's just been a long waiting game...............2. What is FMS?
----------3. Makes me wonder how many people are actually out there walking around with Lyme!
1. terrible lab for Lyme 2. Fibromyalgia Syndrome 3. LOTS!
Posted by Lymetoo (Member # 743) on :
Great- so Quest is NOT the company to use. I have to assume that's the company they used 4 years ago when I was tested and had the 1.02 Lyme AB, and the 41KD show on the Western Blot.
How do I et IGeneX. My doctor is alread yconvinced it's not Lyme- but I get the blood tests reults in tomorrow. WHAT DO I DO!
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