posted
I moved to Massachussetts in 1998. During a physical in 1999, my Doctor recommended that I get the Lyme Disease Vaccine. He explained that the area (North of Boston on the Seacoast) had a high rate of lyme infested ticks, and since I did a lot of outdoor activities I was at risk. He explained it was "brand new" at the time.
From then on Lyme disease never crossed my mind until last October. I woke up one morning and was sore on my side. I looked down and found a tick lodged under my skin. My wife pulled it out, I cleaned the area and went on with my day (I thought to myself - hey I am vaccinated).
Reading the paper that morning I see an article that the University of New Hampshire (where I was now livning) did a study on deer ticks in the county and found that 2 out of 3 carried the bacteria that causes lyme. They showed a picture and it matched my tick exactly.....eerie timing - but hey I was vaccinated.
The next week I was running a half marathon. I ran great, but after the race my body shut down. I ended up in the hospital for abut 5 hours where they did an EKG and gave me IVs. Everything checked out fine and I was on my way with only a recommendation to go see my family doctor that week.
When I saw the doctor I mentioned the tick bite (which was now a scab). He asked if I had a rash and I said no. He said he would do a test just to be sure. I mentioned that I had been vaccinated and at that time he told me they no longer offer it and since I never got boosters it may or may not still be effective.
My test came back OK, but I think I remember them telling me that it was normal based on someone who had the vaccine.
9 month later I had since moved to Texas and began having all sorts of weird symptoms (joint pain, numb face, fatigue, tingling in my left arm, some jaundice, weight loss, abdomen pain, a constantly twitching left eye, and the list goes on and on). I went to the doctor who first suspected Hepatitis as I travel to a lot of foreign countries (I explained I was vaccinated). After those tests came back negative...I left thinking Ok. However the symptoms kept coming and going. I would have bad days and OK days (rarely good days). I went to the emergency room and back to the doctor. Both gave me EKGs which had came back irregular. Then I was sent to a nuerologist for an MRI and a cardiologist.
By this time Lyme came into my head as 95% of the symptoms I looked on line kept directing me to Lyme disease. So I started mentioning this to my doctor (and the history with the vaccine and tickbite) and he never would test me. He said that if I was already tested after the bite, there was not need to do it again.
I mentioned it to every specialist that I was sent to and the Nuerologist listened, as he said sometimes it can effect the nervous system. So he ordered a Lyme test.
It came back with a high rate of antibodies so they sent me to the Infectious disease department. After telling her where I was from and explaining that I distinctly remember being bit, the first question the doctor asked was if I had a rash at any time. I told her not that I can remember. I also explained that I was vaccinated a long time ago.
Her answer was to order a Western Blot test.....but then went on to tell me that even if it comes back positive she most likely can't treat me for Lyme as 1) I never had a rash and 2) It could also be thrown off by the fact that I had the vaccine.
I am not saying I have it or not...but it is a bit disheartening to know that if I did have it, it may never be diagnosed since I was vaccinated at one time and since I never had a rash.
Has anyone heard of someone beign vaccinated and then later being diagnosed with Lyme?
Posts: 9 | From Spring, TX | Registered: Nov 2005
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Walk, no run, to a lyme literate physician ! These doc's you're seeing are completely clueless about this disease. 99.99% are.
However, there's a handful of specialists in lyme treatment scattered throughout the country. I believe their are a few in your state as well. Post in "Seeking a Doctor" forum, and someone will PM doc info for your state.
The lyme vaccine was a pure scam, that's why it was pulled. It actually gave people lyme disease ! Compound this with the tick that was embedded in you, your textbook symptoms of lyme, and there's little doubt you have the disease.
You will need to be treated for an extensive period of time, however, the abx will make you better. Less than 50% exhibit the rash and many don't even remember being bitten because deer ticks in nymph stage are the size of the period on the end of this sentence.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
NP40 is right. You ned to get to an LLMD ASAP. You have many, mnay symptoms of Lyme, you had a tick bite. You have Lyme. Most non-LLMD docs will not treat without a CDC positive western blot. This is why you need an LLMD.
Get over to seeking a doc, get the name, make the call, go to the appointment. Follow through even if your symptoms wax and wane. Waxing and waning is itself cahracteristic of Lyme.
Good luck, robi
You can private message if you like
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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posted
The first thing I would do is get copies of all the Lyme tests you have had done if you do not already have them -- at least the recent tests.
These are your records -- you have already paid for the tests -- some doctors may charge for the records but you may need them for insurance or disability at some point. A good LLMD will want to see these prior tests as well.
Forget about the fact that there was no rash -- you know you were bitten and that is much more significant.
Unfortunately most LLMD's will be booked up for 2 or 3 months, but ask to be put on a waiting list and you might get in sooner.
Ask all the questions you need to. Sorry you are sick, but you have come to the right place to get help. Lots of friendly people here.
Keep us updated on your diagnosis and treatment.
Please pay close attention to your cardiac symptoms. Lyme can cause serious cardiac problems for some people. With an irregular EKG it is hard to know what that means -- did they explain anything else as to what that meant?
The other reason to see an LLMD is that ticks can transmit many other coinfections besides Lyme disease -- most regular doctors would not recognize the symptoms of babesia or bartonella etc. You could easily have more than one infection.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Ditto to everything NP40 said. You don't have to have a rash to have Lyme. I never did. Your tests will be skewed due to the vaccine, but that just means the drs will not take a positive as being a positive. They think it's positive because of the vaccine.
As NP said, the drs are clueless. Find an LLMD immediately.
posted
Your Western Blot test should show antibodies at band 31 and or 34. These were the bands witheld from the CDC surveillance criteria because of the upcoming "vaccine." Band 31 is the most specific for Lyme though it will not be counted toward your positive. Bands 31 and 34 mark the outer surface protein (Osp A & Osp B)of the bacteria.
Band 23-25 is Outer Surface Protein C and also highly indicative of Lyme.
Vaccination will not cause antibody reactions in other bands, so if you have band 41 (the tail of the flagella/part of the spirochete) and one other band (besides 31 or 34) you do have Lyme.
The others are right. You must see an LLMD because only an LLMD will consider your symptoms and tests in the proper manner. The known tick bite is huge even without the tests and your symptoms seem classic to me too.
But don't go anywhere without ALL your records. And don't go to an Infectious Disease doc no matter what.
I am going through all this with my dad right now. The ID doc we were forced to see can best be described as RABID!
He was so off the wall and abusive that I can't imagine what he's hiding, what ID is trying to cover. Does anyone know if the lawsuits against Smith/Kline's vaccine are continuing?
I have been told that the vaccine "potentiated" my dad's Lyme.
Posts: 422 | From Luck home | Registered: Sep 2005
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bpeck
Frequent Contributor (1K+ posts)
Member # 3235
posted
The fact is the researchers really don't even know how to interpret the western blots from some of the people who got the vaccine.
In some individuals - whether they had Lyme symptoms or not - there were many many bands were positive after the vaccine. And it's impossible to know how many people had LATENT lyme that was activated after they were given the vaccine.
If you test positive for Lyme, and you've had the vaccination - a conventional Dr. will say that you might be a "false-positive" and be worried about treating you. - that's why your Dr. doesn't want to test you again. And were you ever told how long the vaccination would last????????? Ask your Doc that question.
Paul Fawcett is the head researcher that has spear headed the drive to understand what's going with the blots post vaccination.
I think if I were you I contact someone like Fawcett - because you really need some answers- and.
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
You would probably show pos in the IGG because of the vacination...this determines that some time in your life you were exposed to lyme(bb) and or the vacination..... If you're pos in the IGM like two out of three then your infection is active....
If I were you I would'nt even mention the vacination any more...for the first reason above and the other reason is that the doctor may think you're looking for evidence to start a lawsuit...
You'll scare them away.....get to a llmd immediately......zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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posted
Thanks for all the advice. I already went back and had the original tests performed by my old doctor in NH faxed to me. It showed I tested positive on the screeening test, but negative on the Western Blot. From what I can tell they must have determined the screening positive was from the vaccinne. Also since I wasn't really having any symptoms at the time, it probably made sense.
I guess for now I will wait and see the results of the western blot on my second round before I decide what to do.
A couple of interesting things
- when I compare the results of the first screeening (right after the tick-bite) it showed 3.45. The one test I just had here a few days back shows 1.70 so it actually went down over the year but is still high on the range scale. However when it was higher I had no symptoms and now I have many symptoms. Don't know if that means anything.
- I also went back to try and get my records of the Lyme vaccination I received. Its been so long (around 5 years) and I can't remember how many shots I ended up getting (as I know it was a series). I was getting them around the same time as my Hep A and B vaccinations so it is a bit murky.
Anyways, the doctor is saying they can see my Hep. shot records but don't see any Lyme vaccine records. Now they have to dig my chart out of storage. I figure the more history / data I can give one of these specialists (If I find one) the better chance they will have in figuring out what is wrong with me.
Posts: 9 | From Spring, TX | Registered: Nov 2005
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NP40
Frequent Contributor (1K+ posts)
Member # 6711
posted
Skater, don't analyze this thing to death. Getting your records and so forth is fine, but you need some abx my friend. Treatment delayed, is treatment prolonged.
Post in "seeking a doctor" area of the forum, call the LLMD and make an appointment. In the interim you can gather your info.
Read this board for a while, and you'll find out what happens to folks who aren't treated in a proper time frame.
Posts: 1632 | From Northern Wisconsin | Registered: Jan 2005
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posted
Ok I got my western blot back and it came back negative. It had line P30 as "Present Abnormal" but it sounds like it is negative unless you have 5 abnormal lines.
Since then, I have 2 new weird symptoms - 1 pupil is larger than the other. The Neurologist and Opthamologist say that this is most likely Adies Syndrome. I also am having stiff muscles in my neck / throat. I feel like these muscles get tired when chewing and swallowing.
I did a search of Adie's Syndrome and Lyme, and came across some cases where this is present with Lyme. This has caused me to say forget the negative Western Blot and make an appointment with a Doctor who at least knows a thing or two about Lyme, and can give me a little more comfort that I don't have it.
I have one for Monday.
Posts: 9 | From Spring, TX | Registered: Nov 2005
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Way to go ..... seeing an LLMD is the best thing to do at this ppoin..... how did you get in so quickly?
Is this an LLMD recommended by someone on this board??
robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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posted
Yes. I was given two possibilities in TX from this board. One was no longer seeing patients the other was able to get me right in.
I have read good things about the dr. from others on the board .... so we will see. She can't be worse than what I have encountered so far (which seems to be a general lack of knowledge on the disease).
Posts: 9 | From Spring, TX | Registered: Nov 2005
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