I am new to the group. It all started in August 05, hand and feet pain and stiffness. Went to the doctor, told it was a virus. About one month later starting having pins and needles in feet and hands with numbness. A couple of months after that lower back and buttock pain, tingling numbness. Now I am having tingling in my whole back, arms and legs. I am also having visual changes over the last week, spots and glares. As one doctor put it I have had the million dollar work up, brain MRI's, cervical MRI's, spine MRI's, blood tests by a rheumatologist and neurologist, EMG, CT scan of pelvic and abdomen....all tests have been normal. I have been tested twice for Lyme both times negative. I have been told I could have fibromyalgia, on examination I had the tender points, I have carpal tunnel on examination but not on EMG study. After reading so much on lyme disease, I am nervous it might be what this is. My dog had antibodies to lyme disease a couple of years ago. The vet said he was exposed. He never had symptoms of it and still does not. Can you have lyme disease and have it not show up on blood work, if so how do you know if you have it and receive treatment for it. My doctor tells me I do not have it because of blood test results. Maybe a need to see a lyme specialist. If you know of any in the Boston area please let me know
Posts: 15 | From Plymouth, MA | Registered: Mar 2006
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Based on your symptoms, I would definitely get to a doctor that treats Lyme to rule it in our out more appropriately. A negative test doesn't mean much. Was it a Western Blot? If so, what were the band results? What lab performed the test?
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
It was not a western blot, it was a antibody test and my doctors office uses Quest Diagnostic. I requested a western blot but the doctors office told me if the first test comes back negative they will stop there and do no further testing. Is there a way to get this other test. My doctors office tells me it is not possible.
Posts: 15 | From Plymouth, MA | Registered: Mar 2006
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quote:Originally posted by kxpetre: My doctors office tells me it is not possible. [/QB]
Then it's definitely time for a change! Find a dr who will test through Igenex. That would be a Lyme specialist in most cases, though a few good PCP's are willing to do so also.
Quest does not test for all the bands that can show up, nor is their test sensitive enough. They miss ALOT of Lyme cases, trust me!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Sure sounds like Lyme to me. One of my first symptoms was carpal tunnel syndrome that came out of the blue. I had loads of tests, so many the bloodsuckers knew me by name. ALL my tests: MRI, spinal tap, etc, were fine along with every blood test.
EIA, ELISA, IFA tests will miss your Lyme if you're not in early stages of the disease. Even in early stage LD these tests can be up to 55% wrong. Try to find an LLMD like the others said.
If you can't find an LLMD, call IGeneX and ask them to send you a test kit for a Lyme Western Blot. Then take the kit along with a "Refusal to Test" form you can download from CALDA to a different doc. Read the form carefully and fill out your part before you go.
Find another group or sole practitioner. Avoid Infectious Disease docs like the plague. Internists are often just as bad. Also avoid any major teaching-type hospitals or universities. You're better off with a GP.
Be firm and clear about your symptoms and your desire for further testing. Do not say you got your information off the Internet. Good luck!
Posts: 422 | From Luck home | Registered: Sep 2005
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posted
Welcome to LymeNet. Sorry you're having such a tough time, but that seems to be "par for the course."
I don't have a medical background, but I've had to learn a lot about Lyme & other Tick-Borne Diseases (TBDs) through experience.
It's highly likely that you have Lyme &/or possible Co-Infections like Babesiosis, Ehrlichiosis, Bartonella.
I say this based on: 1. your symptoms are typical 2. you've had the "million dollar work-up" - all normal 3. your dog had Lyme antibodies 4. According to the CDC statistics, MA has reported 8,195 cases from 1994-2003. Also, the CDC says studies suggest "that LD cases were underreported by 6 to 12-fold." www.cdc.gov/mmwr/preview/mmwrhtml/mm5317a4.htm
The International Lyme & Associated Diseases Society has excellent info. www.ilads.org On the left, click "Basic Info" & read #5-8 about problems with testing.
Labs that specialize in Tick-Borne Diseases are: IGeneX in Calif www.igenex.com Medical Diagnostic Lab in NJ www.mdlab.com
I've heard mixed opinions about Stonybrook, so I'd rather not comment on it.
Read #2 in Basic Info - states LD is a "clinical diagnosis".
Print "Diag Hints & Treatment Guidelines..." at www.ilads.org/burrascano_0905.html It's 33 pages of excellent info on Lyme and also Babesiosis, Ehrlichiosis, Bartonella. Underline, highlight, write in the margins etc so it will be easy to find important points again.
Go to Seeking a Dr here on Lymenet & put your location in the title. Info will be sent by PM (private or personal message).
On the left, contact Support Groups in your state & surrounding states. Just be sure that you get a "really, truly" Lyme Literate Med Dr (LLMD), not just a dr who has treated some cases of LD. You need a dr with lots of satisfied LD customers.
LLMDs have treated enough cases that they have a different perspective of this complex illness.
Please don't be nervous that you may have Lyme disease. I know the symptoms are scarey, but with Lyme, you can be treated. Lots of other illnesses have no treatment.
Since your symptoms started just 7 months ago, you may still be in the early stages of the disease. Many of us went 10, 20, even 30 years without a diagnosis.
With the right doctor & adequate treatment, there is hope, and for those days when you need support, we're here for you!!
Keep in touch & ask as many questions as you need to.
Posts: 4638 | From South Carolina | Registered: Mar 2001
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Sounds like your doctor doesn't know much about LD. The ELISA test is known to be a poor screening tests and most Lyme doctors don't even order it....
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Hi Miss TuTu. Thanks for the kind words. Just trying to live up to the high standards set by people like you!!
Posts: 4638 | From South Carolina | Registered: Mar 2001
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posted
Sure sounds familiar. I had similar symptoms and a positive Lyme test. I have an excellent LLMD. I'll send you a private message with names of MA area LLMDs. hatsnscarfs
P.S. I am getting better, it just takes a while!
Posts: 956 | From MA | Registered: Nov 2004
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posted
Thanks so much everyone for such great information. I really appreciate your help with this.
Posts: 15 | From Plymouth, MA | Registered: Mar 2006
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posted
Oh Boy You sound like me. Apart from headaches, my hands and feet burning (heat and pins/needles) were my first symptoms.
After a million dollar work up ($20,000 actually) I had two negative lyme tests from quest labs...I was told it was fibromyalgia or reactive arthritis to a virus (what virus?)
My docs (in CT) said they didn't want to go down the lyme road with two neg tests. (I didn't second guess them).
Then the big scary pain started to move in. Major pain, nerve pain in my back, chest, neck, shoulders, hands feet and other joints.
I was conviced I was dying--was bed ridden and crying in pain. I was tested for AIDS, west nile virus, rocky mountain, and everything known to man.
Then during a trip to the ER (when I though I was having a heart attack) a nurse listened to me tell the dr. my laundry list (he just said "you're not having a heart attack") and she said.."wow, I'm surprised you are not being treated for lyme disease".
My husband called a dr. friend and he drew blood for a more sensitive test (stonybrook lab in long island). He also prescribe a bottle of doxy which after the first dose, lessend the heat in my hands and feet.
Two weeks later the test came back CDC positve for WgM lyme.
I fired my PCP, found dr. P in CT and started treating this devastating illness.
I am 9 weeks into treatment and am out of bed and back about 85%. I am so happy to not be dying any more.
Don't wait, don't let this disease progress, it gets entrenched very quickly and becomes stubborn beating down your immune system and your spirit.
Don't listen to doctors or tests, study and learn about this yourself. It is the only way through to a true recovery.
Come here often to talk, Best, Kim
-------------------- We are spiritual beings on a human journey...
Michelle M
Frequent Contributor (1K+ posts)
Member # 7200
posted
Hi Kxpetre.
Your doctors oughta be lined up and shot. Figuratively, of course - with all the needles they've stuck in you.
Unfortunately, this scenario is SOOOO common.
Despite how much is known about Lyme disease from research and clinical experience, it is either disbelieved or ignored by 95% of mainstream doctors.
The patient is left to figure it out on their own, or is actually dissuaded from believing it and actively talked OUT of it and mocked by these very doctors.
They don't even know that Lyme is a CLINICAL DIAGNOSIS. Sheesh, even the CDC admits that! That means, even in the absence of a positive blood test, if your symptoms match up, you can be diagnosed with Lyme, because even the CDC realizes that anywhere from 25-30% of Lyme patients are seronegative.
And it's doubtful you're seronegative because no one will give you a western blot, which is outrageous. The ELISA is a stupid and useless junk test. It misses chronic lyme cases up to half of the time. Most ducks have no clue about that, though, and rely on it to "rule out" Lyme on a regular basis instead of using the more sensitive western blot.
You've gotten great advice already. Know that most of us have run the same gamut of stupid doctors and misdiagnoses. When you find an LLMD, things will be SO different and you'll be so relieved! Best of luck and glad you found us!
Michelle
Posts: 3193 | From Northern California | Registered: Apr 2005
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Well I convinced my primary care doctor to do a Western Blot Test. Lab Corp did the test.
IgG - 18, 23, 28, 30, 39, 45, 58, 66, 93 all negative. 41 was Present
IgM - 23, 39, 41 all negative.
What does this mean. Band 41 was present in the IgG. I have an appt. to see a LLMD but not until May.
My dog tested positive again for Lyme a couple of weeks ago when he had some routine blood for dental surgery. He is on antibiotics again.
I am scared should I talk to my primary care doctor about starting some antibiotics.
I am allergic to minocycline (doxycycline, tetra) is there something else that works for Lyme.
Posts: 15 | From Plymouth, MA | Registered: Mar 2006
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posted
The reason people are suggesting a specialist lab for testing is that the big volume labs, like the one that did your test, miss a lot of cases. They are not as sensitive and generally only use one strain. A specialist lab will use more than one frequently. That increases the chances it will be found.
However, testing is still not totally reliable because of a variety of factors (see newby links), so it is important to find a doc that does clinical diagnosis. Good that you have an appt made.
The other thing is that more than one kind of germ may be transmitted by a tick bite. Got to look for the others too, like babesia, bartonella, ehrlichia. Most docs don't know this.
What makes you think you are allergic to the tetracycline group? Could you describe why you think this? Sometimes people experience a herxheimer reaction and mistake it for allergy.
Pretty sad that your dog can get diagnosed and treated for lyme but you can't.
Posts: 8430 | From Not available | Registered: Oct 2000
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David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
My only positive band was 41. It is not specific to Lyme but, rather, to spirochetes. My doctor made a clinical diagnosis based mainly on medical history and current symptoms. My response to treatment confirmed the diagnosis and I am MUCH improved. Keep that LLMD appointment and if your pcp is willing to prescribe antibiotics to tide you over, there are a lot of choices. Biaxin and Zithromax are both good.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
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posted
What is herxheimer? I was on minocycline for two weeks in 1999 for acne. After two weeks I broke out in hives, my hands and bottom of my feet swelled and I had blood in my urine (vasculitis). I was put on prednisone and felt better.
Posts: 15 | From Plymouth, MA | Registered: Mar 2006
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Not sure what happened to you in previous experience. Could have been allergy. The reason this is useful to know is that frequently the first choice of drug for new case of lyme is doxy, because it hits both lyme and ehrlichia, sometimes found together. Not all drugs do this. But maybe you don't have ehrlichia.
Wondering if it might be worth going to an allergist and getting a skin test, just to see what happens. Just a thought, not absolutely indicated.
What treatment is your dog getting?
Posts: 8430 | From Not available | Registered: Oct 2000
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My dog is taking Clavamox (amoxicillin trihydrate/clavulanate potassium)250mg a day. He is only 14 pounds... Not sure an allergy skin test can show allergies to medications, but I will find out.
Posts: 15 | From Plymouth, MA | Registered: Mar 2006
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posted
I thought I had allergies to abx so my PCP had me see an allergist. He said the only one he could test me for was the penecillin family. So I don't think you can get tested for others. Could be wrong, but that is what he told me.
Terri
Posts: 120 | From Northeast, MA, USA | Registered: Jun 2005
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posted
Oh my gosh, thats sounds like my exact story here. Doctor told me I had a virus or flu and to go home and rest. Good for you that you convinced him to do the WB. I had a neurologist look at me an tell me I don't have Lyme-then she proceeded to tell me she is not an infectious disease doctor and that I had mono!
Alot of lyme patients test false positive for Mono. You've got to fight all the way it seems. Even after I begged for a WB the doctor said I needed a 2nd opinion from a 2nd neurologist. I mean honestly! Why would they be willing to pay for another neuro visit when all they had to do was a WB. Crazy Ducks and insurance companies.
In short, get the help you need, your body deserves it and you shouldn't settle for anything less.
Posts: 204 | Registered: Jan 2005
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posted
I only had band 41 as well.. even tho I had the classic rash (definitive diagnosis) and worsening symptoms over months following..
that was the only band that was showing.
It makes sence... the bands indicate antibody reactions specific to pathogens.
It makes sence that some of the most ill will not have allot of antibodies show up on the test, and in some cases they can actually be very ill because their immune system (antibodies) cannot (for whatever reason) put up a proper fight.
I would think getting Band 41 and feeling ill should cause you to investigate further with a doctor/care provider experienced in persistant Lyme and other tick-borne co-infections.
If you were healthy, you wouldn't have that band showing up. Many Docs not experienced in treating chronic cases interpret this test wrongly.
Good Luck!
Mo
Posts: 8337 | From the other shore | Registered: Jul 2002
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bettyg
Unregistered
posted
Welcome Petre! Breaking this up for us neuro lymies to read/understand and help you... Please hit enter often and double-space for us ok. Thanks
quote:Originally posted by kxpetre: Hi, I am new to the group.
It all started in August 05, hand and feet pain and stiffness. Went to the doctor, told it was a virus.
About one month later starting having pins and needles in feet and hands with numbness.
A couple of months after that lower back and buttock pain, tingling numbness.
Now I am having tingling in my whole back, arms and legs.
I am also having visual changes over the last week, spots and glares.
As one doctor put it I have had the million dollar work up, brain MRI's, cervical MRI's, spine MRI's, blood tests by a rheumatologist and neurologist, EMG, CT scan of pelvic and abdomen....all tests have been normal.
I have been tested twice for Lyme both times negative.
I have been told I could have fibromyalgia, on examination I had the tender points,
I have carpal tunnel on examination but not on EMG study.
After reading so much on lyme disease, I am nervous it might be what this is.
My dog had antibodies to lyme disease a couple of years ago. The vet said he was exposed. He never had symptoms of it and still does not.
Can you have lyme disease and have it not show up on blood work, if so how do you know if you have it and receive treatment for it.
My doctor tells me I do not have it because of blood test results.
Maybe a need to see a lyme specialist. If you know of any in the Boston area please let me know
Sorry to read about all your exhaustive, non-productive testing; welcome to our lymie club.
I'm copying/pasting my newbie info for you. Check out info on 3 lyme blood labs: Igenex, Bowen, & MD labs.
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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