posted
Hello. Just a question. How can I tell if I have Lyme disease? I have frequent migraines, joint pain on and off, and sometimes feel like I can't remember things. My mother, step-father, father and 2 of my brothers have all been diagnosed? I know that I should go to a doctor, but right now the only doctors are too far away, and I don't have any insurance. Thus far, doctors have been unable to diagnose anything and have labeled me a drug seeker due to my migraines. I am finding it more and more difficult to find a doctor and feel like I have been blackballed in our area's medical community. Thanks in advance for your ideas. I have had ticks attached in the past and spend a lot of time outdoors, but no bull's eye rash that I can recall.
-------------------- MMMMR Posts: 5 | From Above the Mason-Dixon Line | Registered: Mar 2006
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HEATHERKISS
Frequent Contributor (1K+ posts)
Member # 6789
posted
Hi Mom-made,
One of my first symptoms was the horrible headaches everyday for years. When I first looked at this list I knew for sure.
SYMPTOM CHECK LIST
This is not meant to be used as a diagnostic scheme, but is provided to streamline the office interview. Note the format- complaints referable to specific organ systems are clustered to better display multisystem involvement.
RISK PROFILE (PLEASE CHECK) Tick infested area__ Frequent outdoor activities__ Hiking__ Fishing ___ Camping ___ Gardening ___ Hunting ___ Ticks noted on pets ___ Do you remember being bitten by a tick? No__ Yes__ When? _________ Do you remember having the "bull's eye rash"? No__ Yes__ Any other rash? No__ Yes__ Have you had any of the following? (CIRCLE ALL YES ANSWERS) 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
posted
Headache was my sons first sympton and no migrane medicine in the world helped him. I think you should get tested. The more you wait and question the worse it can become. My son was treated with steriods for the head and that was the worse thing that we did. Watch out for that.
Good Luck
-------------------- Amy Holloway Posts: 255 | From Michigan | Registered: Oct 2005
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BostonLyme2005
Unregistered
posted
Hi,
Get yourself to an LLMD NOW! Find a way to see an LLMD!
Get yourself tested through Igenex as well.
Some people dont have Lyme, they may have some symptoms that Lymies have, but it may be something else, ok.
This way if you have the tests and see an LLMD, you have a better chance of knowing if it is Lyme or not.
Nal
Frequent Contributor (1K+ posts)
Member # 6801
posted
First off, I love you name!
The only true way to know if you have it is to see an LLMD. You could do all the research in the world but only a good dr is going to be able to truly diagnose it for you.
BTW, I never had a bulls eye rash. I did have a severed infected tick bite as a child and we think thats where I got Lyme from even though my system was able to hold it at bay for years. Always felt kinda sick, listless and tired a lot as a child though.
Hang in there, learn what you can from everyone here then see a good LLMD and go from there.
Nancy
-------------------- Life is 10% what happens to you, 90% how you respond to it!
-Chuck Swindoll Posts: 1594 | From Colorado | Registered: Jan 2005
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
MMMMR: Hey, your mom is one smart cookie.
With the history and the symptoms that you listed, it does look suspiciously like Lyme.
I never had a rash and was hardly ever in deep weeds or the woods. Don't give up if you think you might have it. MAKE THEM LISTEN!!!!
Posts: 204 | Registered: Jan 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi, Mom-Made. Thanks for dropping by!
I'm getting the feeling you kinda know in your gut that you probably have Lyme.
You've probably read enough and learned enough already to realize your doctors are brainless about Lyme disease.
The ticks most likely to give you Lyme are so micro-tiny that if you're not hunting for 'em, you probably aren't any the wiser after they've had their fill.
Can your parents help you see an LLMD?
How about calling IGeneX (or go to the website), ordering the IgM and IgG tests - they will mail you the test kit free - then get your parents to go WITH you to the DUCK-tor's office and tell him to puh-LEASE humor you and authorize a western blot. Usually they will go along, just in an attempt to prove how lame and wrong you are (only to have it bite them in the a$$ later when it comes back positive!)
With some positives on a western blot, you might convince a doctor to follow the ILADS guidelines in treating you, if there's no way you can get to an LLMD. However, I would keep working on that option.
Headaches are frequently the presenting symptom of Lyme. For me, migraines 24/7. In combination with the other symptoms you've listed, I would get checked out.
Because if it IS Lyme, it ain't goin' away!!
Good luck -- come here often and let us help, or just rant!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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bettyg
Unregistered
posted
breaking this up for us neuro lymies.. please hit enter often & double space please; thanks!
quote:Originally posted by My Mom Made Me Register:
Hello. Just a question. How can I tell if I have Lyme disease?
I have frequent migraines, joint pain on/off, and sometimes feel like I can't remember things.
My mother, step-father, father and 2 of my brothers have all been diagnosed? I know that I should go to a doctor, but right now the only doctors are too far away,
and I don't have any insurance. Thus far, doctors have been unable to diagnose anything and have labeled me a drug seeker due to my migraines.
I am finding it more and more difficult to find a doctor and feel like I have been blackballed in our area's medical community. Thanks in advance for your ideas.
I have had ticks attached in the past and spend a lot of time outdoors, but no bull's eye rash that I can recall.
BIG WELCOME! Clever name there!
First of all, go to the left-hand column for support groups for YOUR STATE. Email or call the support group leaders shown to find out who is a GOOD LLMD.
I'l copy/paste my newbie comments here. Others may have mentioned them earlie to you, but I can't read this post since someone caused this to go SUPER WIDE!
Wish that person would come back and fix it soon!
Welcome to this 24/7 LYME support group board! Here's TREEPATROL's and Tincup's combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Barrascono's 2005 info first; you will come back to this often.
Extensive info in Treepatrol's newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!
Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn't cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated
YES, I have what you have! Are you on doxy too? That made my extreme eyes 200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board. Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
You will need 2% amber and 10% amber ... Style no. 901 and 910. 1-800-521-9746 TOLL- FREE
mention you have lyme and marshall protocol, they will give you 20% off! Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word!
3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that's why I currently have LONG addresses vs. short tiny ones! I'll keep trying.
TESTING FOR LYME DISEASE ... 3 main LYME TICK BORNE LABS IN USA!
The WESTERN BLOT IGM & IGG blood test nos. 189 and 188, are the only accurate tests for LD. They should only be sent to these 3 USA's Lyme testing labs:
IGENEX LAB: 797 San Antonio Road Palo Alto, CA 94303 1.800.832.3200.
(If the early test, called IGM, is negative; the later test IGG is NOT done!) Please see their web site: www.igenex.com CALL for their current prices effective OCT. , 2005 and
to print their REQUIRED form, which MUST be signed by the doctor, DIAGNOSIS CODE NO. COMPLETED!; Medicare's UPIN no., and your blood taken EARLY in the week so it doesn't sit in post offices! Example, have it taken Mon. - Wed. Afternoon tests show more positive lyme results!
Here is the site to PRINT THEIR REQUIRED FORM to send with blood sample. For me, I printed the FIRST option available on the forms.
Write on their forms you want results FAXED to their drs. Office; snail mail paper copy so it's not lost like mine was!
NON-Medicare patients must PREPAY by check or credit card for the tests since they do NOT handle insurance papers. Medicare patients do NOT have to prepay!
2. MDLabs from NJ, www.mdl.net see their site; they too require their own form. NO prices are listed; you must call their 800 no.
3. BOWEN labs from Florida, www.bowen.net 727.937.9077.
You pay $250 tax-deductible payment for testing, and they send you a picture of what shows up in your blood. You also get the results within 24 hours after the blood is received at Bowen. They are also a 501(c)(3) lab and you can take the donation of $250 off of your taxes if you live in the US.
They fax the results and then about a week later send the actual pictures.
NO way to file for insurance since it's only a brief letter you get back from them even WITHOUT a 501 federal tax no!
Lyme should be diagnosed clinically using medical history in addition with the Western Blot blood tests as no currently available test is definitive in ruling-in or ruling-out infection with Ld pathogens, or whether these infections are responsible for the patient's symptoms.
NOTE: Please send a copy of your health insurance card to YOUR insurance comany (mine is Wellmark BC/BS, Iowa) for them to submit to BLUE CARD (handles other states) them to FORWARD to California's Blue Shield health insurance company since they will require that, DRS. Diagnosis Code No., and which date of service is correct (IGX has 3 different dates on their paid receipts....use the DATE OF ACTIVITY!).
FYI - mine was returned to me after 6 wks. After submitting; dr./blood lab failed to show DRS. DIAGNOSIS CODE NO. on their form! It went to 7 people to be returned to me! Disgusting!
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posted
Hi, I had migraines on and off for four years before all h*** broke loose in my body...
I kept tryin diff things for the migraines--no triptans worked
Pain started traveling to neck, shoulders and heat in hands and feet.
Migraines are often the primary symptoms of neuroborrialis.
If mom made you register, ask mom to help with the expenses of finding a diagnosis and treatment..the sooner you know the sooner you can get on the right track with treatment.
This may mean that your put your other life on hold while you deal with the disease...hard to comprehend such a big deal but if it is lyme, there is no easy way.
You have family who will help you since they all have it too...(I am so isolated in my illness as nobody I know has it and I feel like a big cranky baby)
Good luck
-------------------- We are spiritual beings on a human journey...
posted
Hi, I had migraines on and off for four years before all h*** broke loose in my body...
I kept tryin diff things for the migraines--no triptans worked
Pain started traveling to neck, shoulders and heat in hands and feet.
Migraines are often the primary symptoms of neuroborrialis.
If mom made you register, ask mom to help with the expenses of finding a diagnosis and treatment..the sooner you know the sooner you can get on the right track with treatment.
This may mean that your put your other life on hold while you deal with the disease...hard to comprehend such a big deal but if it is lyme, there is no easy way.
You have family who will help you since they all have it too...(I am so isolated in my illness as nobody I know has it and I feel like a big cranky baby)
Good luck
-------------------- We are spiritual beings on a human journey...
lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Hello child from a smart woman! You have some great responses so far...Take time to go thru the links and it may help you.
I noticed you are from near the Mason-Dixon line..I live in York Co. just over the line..It is a long line so you may not live close to me but York Co. was tied for 3rd in Pa with the number of reported cases and PA was first in the nation.
NOt sure what Maryland's number is but it is definitely gaining momentum and Harford Co was #1 in MD.
The support group that I attend, meets in Harford Co and the leader is rarely off of the phone from trying to help newcomers.
Also we are close to the shore and Chesapeake Tributaries..They may have tidal contamination and some of DE off road sites even have signs warning of potential contamination..It may be blue-green algae or red tides but it also is a neuro-toxin and the symptoms can mimic lyme in all ways.
And while most of your family has this, it does not mean you do but the odds are much greater..It could have been passed to you in utero or the areas where the family has lived and frequented may have been infested with the little buggers..
A EM rash's absence does not rule out the disease..My daughter never had one..And she has never had a CDC positive Western Blot..But she has been equivocal and had positive urine tests..Also according to the possible symptoms, she has from time to time had most of them..
The disease is not easy to diagnose with the tests available but the DRs should look at all symptoms and issue a clinical diagnosis.
There are no lyme Drs in the immediate area but are doable within an hour or more of driving..Depending on where you are located, the local support leaders in MD, PA or DE should be able to help you..Some of them are not as expensive and are able to provide some level of help.
The disease in the local area does not seem to be a pure strain..It seems to be mingled with Bartonella and Babesosis, so they add to the horrors..
Good luck...And do not expect any of the regular Drs to be able to provide much help..Been there and done that to extreme frustration and exhaustion..
Posts: 2360 | From SE PA | Registered: Mar 2004
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posted
We call the doctors who tell us we're nuts, however they phrase it, ducks, as in quack quack.
The only way to know if you have Lyme, or don't have it, is to see a LLMD. If you do have it, the sooner you get treated, the better. If you don't have it, that's good to know, as well.
Worthless tests & labs, a dangerous vaccine, insurance companies refuse to pay, undertreatment the norm, all about money. MO. Posts: 281 | From CT | Registered: Oct 2005
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posted
Hey, guys. Glad you all like the name, but it may be a little misleading. My mom did make me register, but I am a grown married woman with 2 children. I am glad to see that a lot of you have had migraines, but no one around here seems to be a good doctor for Lyme Disease. I will try to get in to see a good doctor, just as soon as I get health insurance.
-------------------- MMMMR Posts: 5 | From Above the Mason-Dixon Line | Registered: Mar 2006
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posted
I have a question for Betty, is there a reason that you reequoted my post? Also, new users such as myself don't havr any idea what a neuro-lymie is, or some of the other terms you use....
-------------------- MMMMR Posts: 5 | From Above the Mason-Dixon Line | Registered: Mar 2006
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Some people have problems seeing and some have problems with concentration and reading and things like that...
The spacing makes it easier for people with these problems to read.
Lyme can effect your eyes and your brain (lots of stuff in your brain)
Jellybelly
Frequent Contributor (1K+ posts)
Member # 7142
posted
I find your name kind of funny. I could swear you were my daughter, but she has insurance. We have been diagnosed, well 3 of us so far. My husband has one positive test, my dad died at 67, before we could explore this, he had a diagnosis of Lupus and my son is still just making fun of me, even though he has been in the ER more then once with heart issues, and is sick every few days with the flu. My daughter came back most positivie of all, CDC positive. Thing is, she is a grown woman, 2 kids, can't afford to go to the doc, complains endlessly about how bad she feels, even actually crys. I offer to pay for the doc, which isn't cheap, just so she can feel better.
She takes up the invitation, and then tells the doc, I don't want to be here, my mom made me come......sigh. Your mom wants you not to suffer. Not that long ago we had no options, but you may have options. The odds of you having Lyme are greatly increased just by having one family memeber with Lyme, but if you have several, well you can figure the math. You owe it to yourself to rule Lyme out.
My mom told me many years ago, long, before we knew about Lyme, don't suffer if you don't need to. Life is to short. She was right, and i got busy trying to figure out what was wrong with me. I finally found out it has been Lyme all along. My daughter has it, and I was just able to help my mom get a diagnosis of Lyme after being sick most of her life, and being told she has MS. She is being treated for Lyme and is making noticable progress already.
You are a lucky woman to have a mom who has walked ahead of you, and can point you in the direction, that might prevent you and possibly your children from suffering needlessly.
Posts: 1251 | From california | Registered: Apr 2005
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Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
quote:Originally posted by My Mom Made Me Register: I have a question for Betty, is there a reason that you reequoted my post? Also, new users such as myself don't havr any idea what a neuro-lymie is, or some of the other terms you use....
Hi, MMMMR! Welcome back! Thanks for clarifying you're a grownup.
Betty (and others) sometimes re-post messages to break up text so that it's easier to read for those of us with neurological lyme disease (or as we fondly call ourselves, "neuro-lymies.")
When you have lyme disease involvement in your brain or neurological lyme, particularly late-stage, it is extremely hard to read long blocks of text.
(Or follow conversations, or think coherently, or remember what we did yesterday, etc.)
So breaking the text up into short blocks makes it easier to read. That's all!
Now, most LLMD's do not take insurance. You might get lucky and find one, but probably not. Check with your mom about this. Reason being, if the insurance company had its way, they would be happy to tell the doctor, "Lyme is cured in 20 days, why are you still treating that person???"
So you pay the doctor yourself, and submit your bill to your insurance company. Typically what you get back is not a whole lot. However, the initial appt. is the biggie, follow-ups are much more affordable.
If in fact you do have Lyme, you really need to be treated. You don't want to end up with brain lesions and cognitive problems. You want to be certain you know whether you have it so you will know the possibility of your children potentially having it.
I'm with Human -- ask Mom to help. What are moms for!!!???
If you do have Lyme, the migraines will take over your life, trust me. Treatment will turn it around -- they will not get better by themselves and I know how brutal they are and feel for you.
Good luck!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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tabbytamer
Frequent Contributor (1K+ posts)
Member # 3159
posted
Hi MMMMR,
Welcome. I get the migraines and cluster headaches too. Only about two years before my Lyme diagnosis did I finally get a doctor to believe me about the pain severity. All the rest (for 12 years prior) thought I was seeking drugs, too.
How old are your children? Or did you say already?
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