For the past 3 months, I've been ill with symptoms which seem like lyme. I've been to every kind of doctor and have been tested for every disease including lyme (3 times negative). After finding this site, I've read a lot posts of people with false negative lyme tests. My lyme tests were done by Quest Diagnostics which don't appear as reliable as IgeneX from what I've read on this board. Well, here's a little description of what I have and any opinions would be greatly welcome and appreciated.
Back in mid November, I had diarhea and nausea (I thought it was stomach virus). This was followed by sore throat symptoms at the end of November. At this time, my legs starting feeling extremely tight and difficult to control. This lasted about a month. Then my hands started to tremor. A few weeks later, my jaw started chattering constantly, but the tremoring in the hands seemed to die down. At the same time I was waking up every night...with a trembling/shaking feeling around my chest area, night sweats, and frequent urinations. Now, it seems I'm waking up every 1-2 hrs. The tremoring in the hands have died down, but it seems now I have a constant vibration in the chest area during the day time. My chest is also very tight with some discomfort around the diaphragm/gallbladder area. I feel there are things definitely wrong with me. Suddenly, I am sensitive to sharp sounds and it seems my taste buds are off (sometimes I taste sweet, sometimes bitter, and sometimes sour on my tongue). I have set up an appointment with an LLMD but it won't be for another month and a half due to his high demand. In the meantime, I was wondering should I start on antibiotics based on clinical diagnosis. Guess I'm afraid to let this disease progress to worst stages if it is lyme. My brother in law, a doctor, thinks I should start on Doxy as a preventive measure. Well, just wondering what you all think...is this lyme and should I start on the antibiotics...and what dosage??? I know dosage can depend on the person...I'm 39 yo male, 157 lbs. I've learned a lot from this board including Dr. B's article, but just want to get an opinion my case.
Thank you all and best of luck!
Posted by jons (Member # 8867) on :
have you had bloodwork done for everything else? (you dont have to answer just want you to check your own list!)
can your brother in law be your doctor of record for the moment, so you can start your blood work and have it sent to a more sensitive lab like Igenex or Stony Brook, LI? Otherwise by the time you go to the LLMD, it will take time to get the results after that, and if he wants to start you on meds they can affect the blood tests as well.
Can he prescribe meds for you in the meantime? No one wants to diagnose you over the board -- but you have to take control. Have your seen a cardiologist re the chest issues? -- an ecco and an ekg are good baselines.
more than one thing can be going on at the same time.
the answers are not always easy - but stay calm. we hope you get help.
Posted by humanbeing (Member # 8572) on :
my story sounds similar. After all the tests came back negative twice from quest lab...and my PCP told me it was fibromyalgia...(my symptoms were neck pain severe headache, night sweats, burning chest and hot hands and feet) I took things into my own hands and had a friend (MD) order a test from stonybrook lab.
Before results came back cause it takes two weeks, he put me on doxy 200mg/day. I also scheduled apptmt w/llmd dr. P in ct.
I am so glad I started the doxy, the test came back CDC positive IgW. Then when I saw the lld, weeks later, he increased the doxy to 300mg/day and added Biaxin two weeks later.
Just be prepared for a herx if you go on doxy, mine happened at day 10. The lld says that this means I had a high germ load.
Also, tell your lld that you will take a cancelled apptmt from another pt and want to be put to the top of the line.
PM me if you would like...good luck!
Posted by flyers999 (Member # 1397) on :
It sure sounds to me, that you could have lyme, or more likely co-infections.
I agree with your brother in law, I would start doxy immediately. Most start out at 100mg two times a day with food, then increase to 200mg or 300mg two times a day after a week or so. In this way you could tell your llmd what your response to doxy has been when you finally see him. This will be much more valuable to him than lyme tests which, I believe , are just about worthless.
The only drawback with starting meds immediately, I believe, is that it will affect your blood work. If this is important for insurance purposes or if it will give you peace of mind, then you might be better off waiting.
Like everyone else here, I am not a doc and this is just my opinion.
Posted by jwenny (Member # 8831) on :
you all are so great! excellent advice from all of you.
during the past 3 months i've seen neuros, endos, cardios, pulmonologists, and several primaries. i've had EKGs, ecocardios, 24 heart monitors, blood drawn 9 times to test for every disease, 24 urine tests, .... everything is normal except i don't feel normal. if it's not lyme, then i must be a different species with a weird condition. the doctors don't have clue of what i have. i think i'm going to get my brother-in-law to prescribe my the doxy and see how it goes. probably start at 200 and incrementally increase to 400 eventually.
Posted by cantgiveupyet (Member # 8165) on :
Also see if he can order the test from Igenex.
www.igenex.com. Since your brother in law is a dr he can do the test and you can have the results for your first LLMD appt. After the blood draw then you can start the doxy.
Sending the blood ahead of time will save atleast a month....and will make more use of your first appt.
You just reminded me of how my hands would tremble....coworkers would say are you OK...i thought i was just cold. Nope it happend when i was warm too.
Good Luck Posted by HEATHERKISS (Member # 6789) on :
MDL LABS takes most insurance. Even my insurance that is supposedly exclusely uses quest.
MDL Labs catches a lot of coinfections.
Good Luck, H
Posted by BostonLyme2005 (Member # 7680) on :
We all have diff. symptoms. No one here can tell you for sure that you have lyme or not. Get your blodd off to Igenex in Cali, A.S.A.P.
Dont take any meds until your blood is on the way to Igenex. Then start with Doxy, it helped me, aslo you may wish to try Tetracycline.
If you have Lyme, Tetra will bring it out!
Posted by mbroderick (Member # 5220) on :
If you get tested through Bowen Labs, you will absolutely know whether or not you have Lyme! They will send you a picture. Unfortunately, the cost of the test is cosidered a 'donation' since it's a research facility.
Posted by Carol in PA (Member # 5338) on :
If you would like your brother in law to order the first screening tests from Igenex, you can call their toll free number and request that they send you a "kit" for Western Blot IgG and Western Blot IgM, tests # 188 and 189.
Once you have the kit, which has instructions, paperwork, and the packing materials to FedEx it back to the lab, you can look it over, and see what's involved.
Just because you request a kit, doesn't obligate you to have the test done.
The kit will arrive in a couple days. Once you send the serum sample to the lab, it will take about three weeks to get the results.
The lab will fax and mail the results to your doctor. This would be a great way to "get the show on the road."
Carol
Posted by bettyg (Member # 6147) on :
quote:Originally posted by jwenny:
For the past 3 months, I've been ill with symptoms which seem like lyme. I've been to every kind of doctor and have been tested for every disease including lyme (3 times negative).
After finding this site, I've read a lot posts of people with false negative lyme tests.
My lyme tests were done by Quest Diagnostics which don't appear as reliable as IgeneX from what I've read on this board.
Well, here's a little description of what I have and any opinions would be greatly welcome and appreciated.
Back in mid November, I had diarhea and nausea (I thought it was stomach virus). This was followed by sore throat symptoms at the end of November.
At this time, my legs starting feeling extremely tight and difficult to control. This lasted about a month.
Then my hands started to tremor. A few weeks later, my jaw started chattering constantly, but the tremoring in the hands seemed to die down.
At the same time I was waking up every night...with a trembling/shaking feeling around my chest area, night sweats, and frequent urinations. Now, it seems I'm waking up every 1-2 hrs.
The tremoring in the hands have died down, but it seems now I have a constant vibration in the chest area during the day time. My chest is also very tight with some discomfort around the diaphragm/gallbladder area. I feel there are things definitely wrong with me.
Suddenly, I am sensitive to sharp sounds and it seems my taste buds are off (sometimes I taste sweet, sometimes bitter, and sometimes sour on my tongue).
I have set up an appointment with an LLMD but it won't be for another month and a half due to his high demand.
In the meantime, I was wondering should I start on antibiotics based on clinical diagnosis. Guess I'm afraid to let this disease progress to worst stages if it is lyme. My brother in law, a doctor, thinks I should start on Doxy as a preventive measure.
Well, just wondering what you all think...is this lyme and should I start on the antibiotics...and what dosage??? I know dosage can depend on the person...I'm 39 yo male, 157 lbs.
I've learned a lot from this board including Dr. B's article, but just want to get an opinion my case.
Thank you all and best of luck!
WELCOME JW to the board. Many of us can't read long paragraphs so I've shortened it up and double spaced between the many paragraphs. This is due to our chronic lyme of our neuro brains.
I'll copy/paste a lot of info below which will help you. Go to the lyme symptom list, and you'll see yourself over & over as you read down the long list of symptoms.
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.
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!
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. 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!
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-26-06 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.
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