posted
I have a lyme blood test result that I think has been read wrong. I would like a LLMD near Central NJ to read my test results. I will also travel to NYC and eastern PA.
I would be very appreciative for any help that members can offer me in finding such a LLMD. Please PM me if you can offer me assistance.
Thank you very much!
Posts: 46 | From USA | Registered: Nov 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Nancy, if you type in your results here exactly as they appear, we can tell you what they mean.
After that, you may want to make an appointment with a lyme doctor.
Tell us:
the name of the lab that did the test name of the test (Western Blot, ELISA, etc.) if it lists bands, give the numbers and number of pluses or minuses list IgG and IgM if you have that list every single thing the test results show!
You will spend at least $400 to $600 for a first appointment with a lyme specialist, so might as well tell us this info before you lay out that kind of money.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Hi TF, Thank you. I will list those things below for my lyme test of two years ago right after I was bitten by a deer tick. However because I had lyme 16 years ago the doctor said that was why my results showed positive. I am not sure what the bands are or the pluses and minuses.
Lab: Labcorp Name of the test: Western Blot & EIA Lyme Ab/Western Blot Reflex: IgG and IgM: 1:37 H Abnormal Lyme IgM by WB: IgM P41 Present IgM P23 Present
Lyme Disease Ab, Quant, IgM 0.93 H
I will have to add other things a little later.
[ 11-04-2015, 08:53 PM: Message edited by: Nancy Loube ]
Posts: 46 | From USA | Registered: Nov 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Nancy, once you have had lyme disease, you can no longer go by the Western Blot test results. It can remain positive for years after you have gotten rid of lyme.
That is because the WB is a lyme antibody (ab) test, not a test that is looking for the lyme bacteria itself. Your body will continue to circulate antibodies to lyme for a good while after you have gotten rid of the disease.
For example, I still tested positive for lyme using the LabCorp Western Blot 7 years after I got rid of lyme.
So, for folks like us, there really is no test to know if we have gotten lyme back or not. We pretty much have to go by symptoms. And, perhaps a trial of antibiotics to see what happens.
My lyme doctor had me do a special lyme test that was supposed to be able to tell if lyme was currently present. It cost me a LOT of money. It came back positive. But, that was 3 years ago and I still have no lyme symptoms.
So, no matter what they say, there really is no good test for those who have had lyme in the past.
Let me know if you still want the name of a lyme doctor. There is nobody really good in New Jersey. If you are willing to travel to get to a really good doctor (outside of Washington, D.C.) I can send you that name.
If you want to tell us your symptoms, we can tell you if we think lyme is back.
If you have not yet looked at the symptom list in the Burrascano Lyme Treatment Guidelines, I suggest you do. The list is on pages 9-11. The Guidelines are here:
posted
Thank you TF. I am so appreciate your kindness in answering my posts. I didn't realize that there was no good test for a second case of lyme.
When I had the second tick bite, I went on a short course of antibiotics until the blood test came back and they told me I didn't have lyme.
About a month or so after that I woke up one morning with a migraine-like unremitting headache, unable to rotate my head fully to the left, and hearing my blood pulsing in my left ear.
Intense headaches now come and go but I always have a headache of some sort. My neck is stiff and when I move my neck it crunches and crinkles. I am lightheaded at times, and feel like when I turn my head my brain follows later.
My eyes jerk with my pulse, and I am now getting floaters.
I get episodic burning tongue and mouth, occasionally my hands or feet burn.
I still hear my blood flow 24/7 and inside my head I experience a pulsing, pressure that matches my heartbeat.
I have had increasing anxiety to the point where I made the huge decision to go on Prozac. Then the depression was more obvious and it has gotten worse and now I started Wellbutrin for that.
I have overwhelming fatigue. Just lately my hands have tremors at times. On occasion lately my knees, elbows and fingers ache.
I guess there may be other things that I haven't thought of right now. I have had many tests and examinations including an MRI/MRA of my head neck and brain. Nothing remarkable on the test results the physician reported, except there was evidence of something that could be caused by migraine.
Thank you for taking the time to be so helpful.
Posts: 46 | From USA | Registered: Nov 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
I definitely think you have lyme now, based on these symptoms. You are describing so many classic lyme symptoms. The combination of symptoms convinces me.
You were undertreated after your tick bite. So, now the lyme has resurfaced.
"Undertreated infections will inevitably resurface, usually as chronic Lyme, with its tremendous problems of morbidity and difficulty with diagnosis and treatment and high cost in every sense of the word." (p. 3 of Burrascano)
So, can you travel to the D.C. area to get good treatment? If so, I will send you the name of a good doctor.
He will also do telephone or Skype appointments after the first in-person appointment, so you would not be traveling monthly.
He can see you quickly. You can take the train to D.C. and the subway to very near his office. That can be quicker and involve less effort. Down and back in one day.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Thank you for your help. I would be very glad to have you send the name of the doctor to me. Traveling one time may be a possibility if followups can be remotely.
Thank you so much.
Posts: 46 | From USA | Registered: Nov 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Just so you know, it takes about 6 weeks after a tick bite for the lyme antibodies to be made, so if you were tested right after the bite, that is why you did not get more positive bands.
You said your test results were:
Lyme IgM by WB: IgM P41 Present IgM P23 Present
That translates into IgM band 23 positive and IgM band 41 positive. (Your test says "positive" instead of showing how positive by + or +++, etc. like a better lab would do.)
Here is what Burrascano says about Western Blot test results:
"Western blots are reported by showing which bands are reactive. 41KD bands appear the earliest but can cross react with other spirochetes. The 18KD, 23-25KD (Osp C), 31KD (Osp A), 34KD (Osp B), 37KD, 39KD, 83KD and the 93KD bands are the species-specific ones, but appear later or may not appear at all. You should see at least the 41KD and one of the specific bands." (page 7)
So, you had a positive test. If you were tested now and have lyme, you could possibly have a lot more positive bands show up.
To get a good understanding of the Western Blot Lyme antibody test, see this explanation given by a lyme specialist:
I will send you the name of the Maryland doctor. However, just know that you will have to travel here every few months. Hopefully, by month 3 you will be feeling better and that will not seem like a formidable task.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
"After a tick bite, serologic tests (ELISA. IFA, western blots, etc.) are not expected to become positive until several weeks have passed. Therefore, if EM [the bulls eye rash] is present, treatment must begin immediately, and one should not wait for results of Borrelia [lyme] tests. You should not miss the chance to treat early disease, for this is when the success rate is the highest. Indeed, many knowledgeable clinicians will not even order a Borrelia test in this circumstance." (page 7 of Burrascano)
Posts: 9931 | From Maryland | Registered: Dec 2007
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