posted
I am getting so tired of seeing all these other doctors.
They just don't believe in Lyme I guess. Even though all (or whatever tests) the tests they do come back neg. They do not believe that I could still have lyme.
Just to refresh I was diagnosed back in 03. I had four bullseyes on my legs (two mirrored on each leg). At the time of discovery I went to my local doc not really knowing what was happening. The rings were red, hot and itched like crazy. I was feverish with a hot cold flash. I was disoriented not really all together there.
The Doc said that it was an allergic reaction to something.
I had gotten some information from my boss who nephew had lyme. He told me that is what it looked like to him. (And he is not a Doctor).
A few days went by and I kept getting worse. My doc finally gave me dox for 7 days. While on the dox I was starting to feel better just in time to stop taking it. He said since I was showing improvement that I did not need more.
A few days later I started to feel bad again and the rings started to itche and burn again. This time I felt as if I was going to passout and was so thursty. A co-worker to me to ER.
Of course long story short ER said it was not Lyme because I had four spots (mirrored)and what was the likelyhood of a traveling tick biting me more then once. They sent me home.
with in a week I found a infectious disease doc 2 hours away that I went to see. Right off the bat she said it was Lyme. By this time it had been several weeks and I was getting headaches, muslce pain, impaired though and speech (could not make complete sentences), mood swings like crazy....
This doc treated me for 6wks on doxy. By then I felt great.
I now have been having problems again on and off but more on recently then not.
I get headaches, muscles feel tight, get musles spasms, body aches, tired all the time......I have been to several doctors here locally and I think they all think I am a hypo. I have tried to call my old doc and well she is gone. Not sure what to do from here.
do these recent symptoms sound like the lyme is creeping back?
Posts: 73 | Registered: Jul 2003
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posted
Find a LLMD and don't waste your time and money going to see doctors who don't know how to treat or diagnose lyme.
If they don't beleive in tickborne illnesses they won't even believe a positive test result.
You are the one who has to live with your symptoms and the choices you make -- you know your body better than any doc ever could.
It doesn't look like you were treated for any coinfections. You could still have Lyme or a coinfection or both.
Don't delay looking for a doc who can help -- find an LLMD.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Ann-OH
Frequent Contributor (5K+ posts)
Member # 2020
posted
You can go to the "Seeking a Doctor" board here and people will send you private messages with names of docs and how to contact them in your area.
Be sure to say where you are and how far you can travel.
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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liz28
Unregistered
posted
I'm not sure if you are still looking for responses to this question, but I would strongly recommend that before you see an LLMD, you research all the treatments first.
It will save you lots of time and money if you know the difference between Lyme, bartonella and babesia, if you know which treatments are the strong ones and which are "starter" treatments, and if you know which ones you want to work with.
The best place to begin is Dr. B's 2005 guidelines:
Not everyone agrees with the exact treatments he recommends, but his overall theoretical model underlies almost every treatment you read about here that actually works.
In general, people who follow the Dr. B model combine antibiotics from two broad classes, cephalosporins and macrolides. They also take a drug for dormant forms of Lyme that can reactivate.
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posted
Thanks - I have actually called my doc that dgnd me to see if she can remommend someone here since there does not seem to be an LLMD in my area.
Hopefully I will find something. I just hope I am not being silly with this.
Does anyone (non-smokers) have a cough with it? Not sure if this is just allergies. Prob.
Posts: 73 | Registered: Jul 2003
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quote:Originally posted by jennygump31: Does anyone (non-smokers) have a cough with it? Not sure if this is just allergies. Prob.
Jenny, I'm a NON-smoker, but cough all the time esp. at night time. They've told me my lungs are like a smoker's due to being around 2nd hand smoke ALL my life!
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