posted
Today I went to the infectious disease doctor. She told me I tested negative for Western Blot and says shes not so sure I have lyme disease. She changed by antibiotic to doxycycline and took me off of tetracycline. She has ordered an MRI of my brain along with my neck and back. I also had about18 different blood tests done today. She reffered me to a neurologist. I have to go back to see her in two weeks once all of my tests are done.
I'm so confused...my regular doctor said I have lyme because of the Lyme Titer results. My level was 1.03 and should not have gone above 0.8, making it a positive test. But...the western blot which was done last Thursday (same day as the horrible spinal tap experience) came back negative on all bands.
Has anyone else experienced anything like this? Why would the titer test be positive and the western blot negative. I hope someone out there has the answers!
Posts: 50 | From Virginia | Registered: Jan 2006
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posted
You need to have your western blot performed at Igenex.
After that, you need to see a copy of the results. One or two bands could mean a positive, if they are very specific to Lyme.
You need to see a LLMD, not infectious disease. ID are well known, usually, to not believe in Lyme lasting more than three weeks.
Good Luck,
Lisa
Posts: 24 | From California | Registered: Jan 2006
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Hi skbland. Do you have copies of your Western Blot? If not, I suggest you get them.
First of all, no Lyme test is completely reliable and results can vary by lab. Many people who have Lyme test negative. Testing should be used as an aid in diagnosis, not solely for diagnosis.
Regarding the Western Blot, the CDC requires a large number of bands to show for it to be considered positive. Many people who have Lyme do not have this many bands. Lyme doctors often look at which bands are present, some are specific for Lyme. It is important to have testing done at a Lyme reputable lab such as IgeneX. Their tests are more sensitive and they list more bands.
Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected. It may affect treatment choice and progress. Have you been tested for these?
What dose of Doxy are you taking?
It is very important to see a Lyme knowledgable doctor. Many doctors do not understand Lyme and follow outdated protocols. As was stated, infectious disease doctors are not usually the best to see for tick-borne illnesses.
If you post where you are located, I am sure someone could help you find a Lyme doctor.
Hang in there okay? Good help is available.
Posts: 4682 | Registered: Oct 2000
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
What were the band results on the Western Blot. If you do not have a copy and do not know this information, that would be your next task.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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I'm taking 100mg of doxy twice a day. I had Lyme IGG western Blot and Lyme IGM westerm Blot. On my copy of results it says: Band's Present - None (both tests) and the tests were performed by Assoc. Regional Univ. Pathologists, Salt Lake City, UT.
I have left a message for a LLMD in my area but she has not called me back yet.
Still...I don't understand why the Lyme Titer is high. The doctors are saying there is some type of bacteria which is high...they just don't know what or why.
Posts: 50 | From Virginia | Registered: Jan 2006
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
100mg of doxy twice a day
Thats not high enough dose for lyme unless your very little person.
Get that LLMD
LYME is diagnosed clinicaly not on those test anyhow.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
My ELISA test was positive, my W.B. negative, but doctor diagnosed it as Lyme anyway. BTW, as I know it is unusual, my LLMD is an I.D., and he follows Dr. B.'s protocols. He is the ONLY LLMD in my area. I am very blessed to have him.
Best of Luck, Jill
Posts: 203 | From Jacksonville, FLorida | Registered: Oct 2005
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posted
Here's the information I was looking for earlier:
REASONS WHY A SERONEGATIVE TEST RESULT MIGHT OCCUR
1. Recent infection before immune response 2. Antibodies are in immune complexes 3. Spirochete encapsulated by host tissue (i.e. lymphocytic cell walls) 4. Spirochetes are deep in host tissue 5. Only blebs in body fluid; no whole organisms needed for PCR 6. No spirochetes in body fluid on day of test 7. Genetic heterogeneity (300 strains in U.S.) 8. Antigenic variability 9. Surface antigens change with temperature 10.Utilization of host protease instead of microbial protease 11.Spirochete in dormancy phase 12.Recent antibiotic treatment 13.Recent anti-inflammatory treatment 14.Concomitant infection with babesia may cause immunosuppression 15.Other causes of immunosuppression 16.Lab with poor technical capability for Lyme disease 17.Lab tests not standardized for late stage disease 18.Lab tests labeled "for investigational use only" 19.CDC criteria is epidemiological, not a diagnostic criteria
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Still...I don't understand why the Lyme Titer is high.
Maybe you have Lyme?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Sammi
Frequent Contributor (1K+ posts)
Member # 110
posted
Hi skbland. Your titer is high because you have Lyme.
Regarding the Western Blot, it needs to be done at a Lyme lab such as IgeneX in Palo Alto, CA.
200 mg of Doxy is not strong enough for Lyme. I believe the recommended dose is 300-600 mg daily. Make sure you read the pharmacy print-out on how to take it, there are a few tips. Do not have any diary, magnesium or iron products two hours before or after taking it or it will not be absorbed properly. If it makes you nauseous, eat something substantial and non-dairy before taking it. Drink a full glass of water when you take it. Avoid the sun. You can get a severe burn in minutes even when wearing sunscreen. Do not lay down for at least an hour after taking it or you can ulcerate your esophagus. This is very painful!
Whenever you take any antibiotics, make sure you take high-quality acidophilus capsules. They replace the good bacteria in the body and help to prevent yeast overgrowth. The best ones to get are refrigerated. Most healthfood stores have them. Wait at least two hours before or after taking the antibiotics to take the acidophilus.
Are you aware of the Jarisch-Herxheimer Reaction (herx)? Often, when people who have Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary when it happens, but it is a good sign the antibiotics are working. Although it can vary individually, many people experience this at the beginning of treatment and every three to four weeks.
It is a good idea to document your symptoms daily. One way to do this is to list the three main symptoms you have each day and a numerical rating of their severity, from 1-10. Over time when you review this, you can see when your herxes occur and how you are responding to the meds.
I hope you hear back from the Lyme doctor soon so you can get tested for the co-infections and get the treatment you need.
Keep us posted on your progress okay?
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