I am asking for help. How does one get beyond a negative ELSA Test...If someone can give me a detailed way of getting a blood sample to the right lab for the latest most accurate tests it would be very helpful. Ive taken at least 15 tics of me in the past several years.. 3 already this year.. Ive had 3 negative ELSA tests.over a couple years.Only one bulls eye that faded quickly and several others that puffed up like a walnuts under my skin...that still itch to this day...But for the past six weeks since the first 3 bites this year Im In the GRIP..heres the wierd stuff that happens daily:
Feels like I have a cobweb on my face at all times< Every day my eyes around 7pm go bright red< My vision is blurred ...this comes and goes< I'm reversing the last half of words when I type them> Im bumping into walls and tripping< Im in almost total exhaustion daily...have 2 to three good hours per day< My right shoulder feels locked and hangs limp..this was my first symptom> wild panic attacks that send me out my front door into the yard. gasping for my breath.. My heart beats so hard my carotid arteries fell like they are going to exploded..at this point I shuffle around the yard with a rake in hand so I dont fall over. till I gain my bearings again> I cannot watch a movie because I cant put the sequece of events together to form a plot, plus the flickering of the tv light kicks me into overdrive anxiety..thus another panic attack starts...more like a tremor seizure type...if I have the chills it makes it worse> My Knees wobble like old rubberbands< My head and neck seemed fixed in one position and any periferal movement I see seems to speed up x10> Have trouble raising both arms at the the same time over my head..they feel like there a hundred pounds each> total motion sickness while driving ..have had to stop the car and have a friend drive> I find it very hard to function on any level
Did 21 days of doxy 100mg x2 prior to most of these symtoms..EEG normal ..Echo Cardio Normal.Elsa Negative ..I feel for anyone who is dealing with this.Doc says no Western blot because Elsa was negative...Where to I go now?
Posted by cbb (Member # 788) on :
Hi deepdig, Welcome to LymeNet. So sorry you're so sick, but glad you found this site. I'm not a dr, but I have some suggestions.
You asked - Where do I go now?
Find a new dr - a Lyme Literate Med Dr (LLMD). They treat Tick-Borne Diseases almost exclusively, so they have a better understanding of them for diagnosis & treatment.
Go to "Seeking a Dr" here on LymeNet & put your location in the title. Dr's names are not given here, but contact info will be sent to you in a pm.
Next, click "Support Groups" on the left & contact the groups in your state & surrounding states. Be sure you make an appt with a dr who has lots of "satisfied customers."
Go to www.ilads.org and click "Basic Info". Read pages 1 & 2. Items about testing (may be # 5-8 ?), especially about how the ELISA test is unreliable.
Lyme is a "clinical diagnosis" with tests being supportive info. No test should be used to rule-out LD.
Read #10 which says in part - there has never been a study that proves that 30 days of antibiotics cures Lyme. (I don't have a copy in front of me, so I'm relying on memory.)
Print "Diagnostic Hints & Treatment Guidelines..." It's 33 pages of excellent info about Lyme & several Co-Infections; written by one of the best LLMDs. www.ilads.org/burrascano_0905.html
Your 200 mg of Doxy per day is the typical dose presecribed.
Read on page 17: Antibiotic Choices & Doses Doxycycline - Adults: 200 mg bid (twice/day) with food
You took Doxy for 21 days. Read page 19: Treatment Categories You'll see that for all categories he recommends longer than 3 weeks. If it is decided to treat for an embedded tick bite with no signs or symptoms of Lyme, he recommends oral therapy for 28 days.
Early Desseminated Disease, he says to treat until no active disease for 4 to 8 weeks.
Some of your symptoms are also on the lists for Co-Infections. This makes it difficult to know what you're dealing with & generally, co-infections take different treatment from Lyme. In other words, you have to know which diseases to target with the meds.
Read what Dr B says about Co-Infections (Babesiosis, Ehrlichiosis, Bartonella).
Under Medical Questions, look for "Newbie Links"
Hope this helps you on the road to better health. Keep in touch & ask as many questions as you need to ask. Someone usually has info that will help. Like they say - experience is the best teacher.
[ 13. May 2006, 11:40 PM: Message edited by: cbb ]
Posted by bettyg (Member # 6147) on :
Welcome, I'm breaking this up so we can read it better. Many of ur neuro brain folks, can not read long, continous paragraphs.
So please hit enter often & double space between EACH paragraph. We thank you.
quote:Originally posted by deepdig:
I am asking for help. How does one get beyond a negative ELSA Test...If someone can give me a detailed way of getting a blood sample to the right lab for the latest most accurate tests it would be very helpful.
Ive taken at least 15 tics of me in the past several years.. 3 already this year.. Ive had 3 negative ELSA tests.over a couple years.
Only one bulls eye that faded quickly and several others that puffed up like a walnuts under my skin ...that still itch to this day...
But for the past six weeks since the first 3 bites this year Im In the GRIP..heres the wierd stuff that happens daily:
Feels like I have a cobweb on my face at all times
< Every day my eyes around 7pm go bright red
< My vision is blurred ...this comes and goes
< I'm reversing the last half of words when I type them
> Im bumping into walls and tripping
< Im in almost total exhaustion daily...have 2 to three good hours per day
< My right shoulder feels locked and hangs limp..this was my first symptom
> wild panic attacks that send me out my front door into the yard. gasping for my breath..
My heart beats so hard my carotid arteries fell like they are going to exploded..at this point I shuffle around the yard with a rake in hand so I dont fall over. till I gain my bearings again
> I cannot watch a movie because I cant put the sequece of events together to form a plot, plus the flickering of the tv light kicks me into overdrive anxiety..thus another panic attack starts...
more like a tremor seizure type...if I have the chills it makes it worse
> My Knees wobble like old rubberbands
< My head and neck seemed fixed in one position and any periferal movement I see seems to speed up x10
> Have trouble raising both arms at the the same time over my head..they feel like there a hundred pounds each
> total motion sickness while driving ..have had to stop the car and have a friend drive> I find it very hard to function on any level
Did 21 days of doxy 100mg x2 prior to most of these symtoms..EEG normal ..Echo Cardio Normal.Elsa Negative ..I feel for anyone who is dealing with this.
Doc says no Western blot because Elsa was negative...Where to I go now?
I'm going to dcopy/paste newbie info here for you. I had DETAILED info on getting the western blot test done w/test codes, etc. & recently LOST it all. So I've been trying to find it online & get it back that way.
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. Burrascono'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.
I ordered the NOIR sunglasses. 2-26-06 corrected wrong email to:
mention you have lyme and marshall protocol, they will give you 20% off! I'm NOT on MProtocol, but mention it anyway. I was on their new board almost 12 months!
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.
Tincup posted March 8, 2005, 2218 Lyme Disease Survey Responses February 27, 2005 - March 9, 2005 1. How many doctors did you have to see before being properly diagnosed? 112 responses Average number of doctors consulted before being diagnosed- 14 Answers ranged from 1- 120 different doctors 2. Have you had problems getting insurance to pay for doctors or treatment? 87 responses Yes- 63 No- 24
3. Have you lost income because of Lyme disease? 106 responses Yes- 99 No- 7 4. How much does it cost you (average) per month for Lyme related expenses? 61 responded Average cost per month per patient- $4,472.49 Low- $500.00 High- $21,492.00
5. How many different medications do you take per day? 77 responded Average - 14 different medications per day Low- 3 High- 25
DIAGNOSIS
The WESTERN BLOT IGM & IGG blood test nos. 189 and 188, are the only accurate tests for LD. They should be sent to USA's Lyme testing (1 of 3 top lyme labs only; MD Lab, and Bowen Lab other 2!):
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 current prices and to print their REQUIRED form, which MUST be signed by the doctor, Medicare's UPIN no., PUTS DIAGNOSIS CODE on IGX's special request form. and your blood taken EARLY in the week so it doesn't sit in post offices! Afternoon lab draws show more positive lyme results.
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!
Also local lab, didn't transfer drs. dx code & hung up my reimbursement from BC/BS. Since I was from Iowa, it went to BLUE CARD to go to Calif. BS office. They sent to IGX to have them call my dr. for dx code; but IGX didn't & returned paperwork to Calif. office. CA office sent it to my dr. & went to business office who DIDN'T put the dx code on, but sent all to me! frustrating.
Posted by Michelle M (Member # 7200) on :
If you can't get to an LLMD right away, go to http:/www.ilads.org and click on 'The Basics.'
Print it out.
There's a section showing how essentially worthless the ELISA test is. It's YOUR money/YOUR insurance. You want a western blot. What's more, you want one from IGeneX labs. Their IgG/IgM test for Lyme. Though for more accurate results you should be off abx for a couple weeks before testing.
Ask the doctor to "humour" you, at least.
Doctors are SOOOO infernally ignorant.
This is why you absolutely must start dealing with an LLMD. You will otherwise be beating your head against the wall repeatedly and wind up giving up or letting him talk you out of it or label you "depressed" or "hypervigilant" or some such nonsense.
Good luck!
Michelle
Posted by deepdig (Member # 9226) on :
Thank you all for your quick response..cbb..michelle..betty g..taber..One of the hardest things to do when gripped by lyme is to communicate how you feel..
My short term memory is shot..It is very hard to read or type properly, let alone comprehend.
Talk about being left in a vulnerable state of mind..Let alone having to think of common words at all times to explain yourself to the doctor. All of this while you in a state of vertigo, panic and your face is numb and your head feels like its going to explode and to top it off your joints are so sore it make you sick to your stomach.
Meanwhile your neck is stiff and your having trouble looking up at the doc..you hang on each of his words hoping to hear "lets do a Western Blot" and instead he takes the fresh tic you put in a cup and brought him and puts it aside and say's "I think it would be wise you went on antidepresants"
That was 15 years ago..and yes I did go on antidepressants for all of those 15 years...Now Im reinfected with all the same issues and trying to pull my battle gear out of the closet again...Here we go again....Starting out as before, with a negative ELSA..
This is why this site is so important..We are not alone in this struggle.I asked for Help and I received it immediately...Thats powerful stuff..Everyone should have the chance to tell their own story.
Even though it took me an hour and a half to write a short message because of my limitions from Lyme, Im glad I did. My hope is that we are all one in this battle and that we will gain the wisdom and strength needed to overcome and gain our lives back.
Posted by bettyg (Member # 6147) on :
deepdig, I hear you.
Say, would you leave the print just as is for readability for those of us with severe neuro problems? You must have used italalisis? ... very hard to read.
Also, take someone with you to take notes, and/or a tape recorder to record things so you can listen to over & over until you "get it". It helps me.
Posted by deepdig (Member # 9226) on :
Sorry about the Italic print ..I have no Idea how that happened....
I took a step today by calling IGENEX Lab in California. Because the brain fog is pretty thick at the moment most tasks are becoming monumental.
I asked the Lab to send the Lyme Kit to me. Im not even sure if this is the right way to do it. But I hope My primary doctor will follow through and take a sample so I can get it out to them.
If anyone knows any do's or dont's or anything that has to do with getting the sample and doing it right, let me know...thanks
Posted by deepdig (Member # 9226) on :
It didnt occur to me at the time, but I didnt mention that I am on Benicar. When I jumped to a suggested sight on eyes and sunlight.."the MArshall Protocol" MP I see that there is all this discussion about Antibiotics and Herx and Benicar.
During my 3 weeks on antibiotics along with Benicar each day I was getting worse symptons...Cardiac...panic ...intense upper back and neck pain and stiffness..
When the antibiotics stopped the heavy duty cardo anxiety panic stuff ceased....Now its mostly brain fog..stiffness and short memory problems...
If Im understanding Herx correctly then I was herxing too the max during the last week of anti's and Benicar...Its all new to me but maybe someone else has experienced this...
Posted by bettyg (Member # 6147) on :
I'm copy/pasting my newbie info links here. I'll come back and post another on Igenex DO & DON'TS! for you ok.
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. Burrascono'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.
I ordered the NOIR sunglasses. 2-26-06 corrected wrong email to:
mention you have lyme and marshall protocol, they will give you 20% off! I'm NOT on MProtocol, but mention it anyway. I was on their new board almost 12 months!
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.
Tincup posted March 8, 2005, 2218 Lyme Disease Survey Responses February 27, 2005 - March 9, 2005 1. How many doctors did you have to see before being properly diagnosed? 112 responses Average number of doctors consulted before being diagnosed- 14 Answers ranged from 1- 120 different doctors 2. Have you had problems getting insurance to pay for doctors or treatment? 87 responses Yes- 63 No- 24
3. Have you lost income because of Lyme disease? 106 responses Yes- 99 No- 7 4. How much does it cost you (average) per month for Lyme related expenses? 61 responded Average cost per month per patient- $4,472.49 Low- $500.00 High- $21,492.00
Posted by bettyg (Member # 6147) on :
LYME DIAGNOSIS: They should be sent to USA's Lyme testing (1 of 3 top lyme labs only: IGENEX, MD LAB, OR BOWEN LAB!):
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 current prices and to print their REQUIRED form, which MUST be signed by the doctor, Medicare's UPIN no., DIAGNOSIS CODE completed, and your blood taken EARLY in the week so it doesn't sit in post offices! Afternoon lab draws show more positive lyme results. 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! 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.
Write on IGX form, FAX results to my dr., and snail mail paper copy. Mine were lost for 4+ weeks! Also local lab, didn't transfer drs. dx code & hung up my reimbursement from BC/BS.
Since I was from Iowa, it went to BLUE CARD to go to Calif. BS office. They sent to IGX to have them call my dr. for dx code; but IGX didn't & returned paperwork to Calif. office. CA office sent it to my dr. & went to business office who DIDN'T put the dx code on, but sent all to me! frustrating.
I tested positive on both from IGX.
I have 2 suggestions I'd change for the future for anyone testing there! 1. Make sure IGX's pre-printed form has the drs. diagnosis on it, signed by him, etc. I was the first one tested by local lab; they missed putting in code transferring it from their regular to IGX's. So when I sent my paperwork in for reimbursement for my out of pocket $180, it went to Blue Card, California. They sent it to IGX to call my local dr. for this needed dx no. The next thing I knew, IGX sent it back to Cal. BC without any dx no. on it; Cal. sent it to my drs. office for numbers.
They would NOT put it on, and sent it all back to me 6 wks. after I originally sent it to Iowa's BC/BS. I spent 2.5 hrs. on phone calling IGX, Cal. BC, and Iowa's BC offices...ready to hang them all. I did call IGX and talk to the office mgr. about this mixup. She said they ATTEMPT to call the drs. for this info. If they can't get thru, they fax them. I checked w/local drs. office; they did NOT fax them anything.
2. Write on IGX's preprinted form, you want the results FAXED back to your drs. office with paper copy sent as usual. This way, if one if lost; other will get thru. Mine was "LOST" for 1 month. I had to do the followup on this since local blood lab did not! It was 4.5 wks. before I received my positive dx.
Suggestion: You could call out to IGX's 1-800 lab and ask that they make a note on FAXING to your dr. for results when done! Waiting is unbearable especially since someone was sitting on my results for over 4 wks!
Betty G
Posted by Michelle M (Member # 7200) on :
Hiya DeepDig. Glad you mustered the oomph to post! I know how hard that musta been on a "bad brain day."
Ask IGeneX to send you test 188 and 189, Lyme western blot IgG and IgM. (Double check to make sure those are the right numbers). They'll even send you a return FedEx pak, postage prepaid!
Get your doc to sign off on the authorization. He'll get over it. He'll probably even roll his eyes at you, heave a big sigh and shake his head and smile. Just tell him you have some friends with Lyme who keep insisting that you do it. BLAME US!!!
Then take it all to a local blood lab. ON A MONDAY. Put your credit card info on the top right hand portion so IGeneX can bill you. (It'll cost about $180 or so.) Make sure your doctor's fax number is on there so they can fax him the results.
Then, STICK OUT YOUR ARM!!!
Have the lab use the IGeneX collection kit and FedEx the samples that day. If they are not going to do it, drive the samples YOURSELF to FedEx THAT DAY.
It's that easy.
Questions? Call IGeneX.
If your "duck" has questions, he can call Dr. Nick Harris at IGeneX, who is brilliant and friendly and will explain anything with great patience.
Be clear of any antibiotics for two weeks before testing for most accurate results.
Results should be in within a couple weeks.
Ask your doctor for a copy. (It's your right.) Then share the results here. It is almost certain you will be positive.
Then let's see what your "duck" has to say...!
Find yourself an LLMD, dear one. You need someone to believe in you and help you get better, not someone you have to keep "proving" something to.
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