I finally figured out how to post. Sorry, I bothered so many people. Anyway, let me get to the point.
Last year I was diagnosed with Lyme Disease after being bitten by a tick in my head. I had all the symptoms, except I did not have the bulleye problem- at least that I could see, since I have fairly thick hair. I became ill three days after I found the tick, which I was not certain how long had been there.
My first test showed positive for Lyme with a 4.72 H figure in the results. Then my rheumatologist ran a Western Blot test, which only showed one band as positive, which was band # 41, which I understand from posters on the Internet is the Lyme specific band.
Over the past couple of weeks, I had what I thought was a relapse, so on Tuesday, I saw an infectious disease specialist, who claims that my first test was "false positive," due to the fact that the CDC requires that five bands be positive on the Western Blot test.
She thinks I may have Epstein Barr Disease, and is running more tests, including the Western Blot test again.
I am feel fairly certain that I have Lyme Disease, and this is all very frustrating. I am tired and nervous all the time, and my fever goes up and down. This morning I woke up sweating like crazy. I have so much to do, since I am expecting my first grandchild in early August, but am too tired to function.
God Bless anyone who has suffered this way. I tell people who have their health to thank God every day that they are well.
I have rheumatoid arthritis, and one of its symptoms is tiredness, and whatever I now suffer from is exacerbating the problem.
I go back to the infectious disease specialist on June 20th, and hope she finds out what the problem is. I really liked her. She saw me for three hours! Never has that happened with any doctor in my 56 years, so things look hopeful in that regards.
Any one with any responses, I would greatly appreciate it.
-------------------- K-in Virginia Posts: 17 | From Virginia | Registered: May 2006
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Infectious Disesae doctors are the worst for Lyme. Mandate that they order the IGeneX test (panel 5060 or like) and then post the results for comment. I suspect your previous test was not using IGeneX and thus any IND (indeterminate) bands were not reported back. They carry important information.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Ditto to what Scott said. Infectious disease drs rarely find Lyme and if they do, they won't treat it past 4 wks. You are unlikely to get well in 4 wks after having this for more than a year.
If the test comes back negative again, please begin your search for a Lyme Literate MD....actually you would be better off beginning your search NOW.
I think there's a pretty good LLMD in VA.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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bettyg
Unregistered
posted
K, welcome to the board.
Yes, I agree with Scott; be retested only at IGENEX, CALIF. ... no. 1 LYME diagnostic lab in USA.
Go to support group page, left column, for your state, and contact group leaders.
Otherwise go to SEEKING DR. and post what city/STATE closest to you. They will PM, private message you. We don't post drs. names on the board EXCEPT FOR DR. JONES & DR. JEMSEK, both being investigated by their state's health dept. trying to take away their MD licenses!!
Are you on medicare? If yes, medicare will pay for this test completely about $1,000. Otherwise, you pay out of pocket upfront since IGX does NOT handle insurance.
You can submit to your insurance company; some reimburse well; others like my IOWA BCBS paid only $43 of $180 western blot igm/igg in 04.
go to TREEPATROL'S NEWBIE LINKS, look for info on 3 blood labs: IGENEX, BOWEN, MD LABS.
PRINT OFF IGX' PRE-PRINTED FORM! Complete, get your MD's signature, DIAGNOSIS CODE, medicare no. if needed, etc.
Write on there...FAX RESULTS TO MD; mail paper copy to his address. My results were lost, and I had to pursue after 4.5 wks. waiting time!
I'll copy/paste newbie links here for you:
Some others have been able to get into remission, but majority don't have this chance.
Am I trying to scare you? YOU BETCHA. I wish I was in your shoes and could be CURED EARLY from this fatal disease.
I'll copy/paste my newbie links for you here. Good luck and keep us posted.
Since you are in NC, see SUPPORT GROUPS listed on left side, USA, NC, and it should show NC groups. There are phone nos. & email to make contact with folks.
OTHERWISE, go to SEEKING DR. SECTION: Post what city/STATE you re looking for a LLMD, lyme literate MD, in. People will PM you, personal message.
Some others have been able to get into remission, but majority don't have this chance.
Am I trying to scare you? YOU BETCHA. I wish I was in your shoes and could be CURED EARLY from this fatal disease.
I'll copy/paste my newbie links for you here. Good luck and keep us posted.
Since you are in NC, see SUPPORT GROUPS listed on left side, USA, NC, and it should show NC groups. There are phone nos. & email to make contact with folks.
OTHERWISE, go to SEEKING DR. SECTION: Post what city/STATE you re looking for a LLMD, lyme literate MD, in. People will PM you, personal message. 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 1-10 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.
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! http://tinyurl.com/
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.
RASH ITCHES -- use ``rubbing alcohol`` on it especially the corners good. Hubby suggested; worked great for me; rash cleared up in 2 days vs. weeks/month
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
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Mathias
Frequent Contributor (1K+ posts)
Member # 5298
posted
Your ID is wrong. CDC criteria is only to be used for reporting purposes not for making a diagnosis. A tick bite with a high "lyme titer" and a band 41 western blot should be sufficent for that, if not you need a new doctor.
-------------------- Mathias Posts: 1250 | From New Jersey | Registered: Feb 2004
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