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» LymeNet Flash » Questions and Discussion » Medical Questions » Tests,,At my wits end..

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Author Topic: Tests,,At my wits end..
mallai
Junior Member
Member # 24463

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Last summer I was bitten 3 times by ticks on my Ct. property over a 2 month period..They were all "overnighters" as I believe they attached when I went to bed and found them the next morning..No bulls eye rash, but quarter size red marks for a week..I thought nothing of them until last fall when my left elbow became extremely sore..Then my right shoulder, then my hamstrings started aching..my anger is ridiculous, raging and uncontrollable..I need naps somedays and NEVER did..I feel lousy most of the time..but..somedays I feel ok..Being alone makes me feel very strange, like I don't belong anywhere in this world..ONE glass of wine at 7pm and I am hungover so bad the next day I can't get out of bed..I've stopped drinking and don't want to!!..I had a test done by my GP..The Elisa screen and the WB..The screen came back positive, the WB, 2 bands were positive, 21 and 58..Not sure if they checked 31 and 34..I then went to an infectious disease dr..He put me on doxy 200mg for 3 weeks (it hasn't helped) and re-tested..The results are all negative..the labs used (Viromed, Labcorp) seem suspicious as the result page has no specific info except being flagged as "neg". I have made an appt. with a well known LLMD in Wilton, Ct and wondering if I am wasting my money going to him as he is very expensive..Both these dr's I have seen are blaming it on my age (50)and giving me other alternatives..I'm really scared now as I'm not sure why I'm not feeling well..Also the LLMD is expensive!..What would you all suggest?..Thanks so much..
Posts: 4 | From Westchester County, NY | Registered: Feb 2010  |  IP: Logged | Report this post to a Moderator
massman
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Lyme is a clinical diagnosis.

That means history, signs + symptoms are used to diagnose, not just lab tests.

Don't listen to the brickhead so called docs that use only lab tests. The good LLMD may be a place to start.

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Starfall1969
Frequent Contributor (1K+ posts)
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I agree with massman, Lyme is a clinical dx.

However, if I am reading your post correctly, you did have a positive test on the Elisa--that, in my experience is very rare, and should be taken seriously.

The treatment you had was not long enough, as even in the best case scenarios I think you're supposed to be on Doxy for a month.

You should see an LLMD, because not only do you probably have Lyme, but you may also have coinfections like babesia, bartonella, ehrlichia, and others.

Most regular doctor have not even heard of these and do not test for them.

It is imperative that oyu find a good LLMD and begin the correct treatment. Just ask anyone on here who has been suffering for a long time.

I am dealing with worsening symptoms again myself, and I still blame these so-called docs who told me everything from it's my age to I'm just a stay-at-home mom who just needs to get a life when I was actually suffering with Lyme and Ehrlichia.

Good luck!

Posts: 1682 | From Dillsburg, PA | Registered: Sep 2008  |  IP: Logged | Report this post to a Moderator
Pinelady
Frequent Contributor (5K+ posts)
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If you did not clear the antibiotics first they may

have aided in making a neg. test...Igenex did ask

for no antibiotics in the blood for at least 10

days and I would make it more than that.

I would say with the bands you had, it is lyme and you should be treated for as long as it takes.

Prayers for a easy road.

--------------------
Suspected Lyme 07 Test neg One band migrating in IgG region
unable to identify.Igenex Jan.09IFA titer 1:40 IND
IgM neg pos
31 +++ 34 IND 39 IND 41 IND 83-93 +
DX:Neuroborreliosis

Posts: 5850 | From Kentucky | Registered: Dec 2008  |  IP: Logged | Report this post to a Moderator
TF
Frequent Contributor (5K+ posts)
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I suggest you take a look at the Burrascano lyme treatment guidelines found here:

http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf

Starting on p. 9 there is a list of many lyme symptoms. Notice that on p. 11 it lists "worse hangover from alcohol."

That is a very common lyme symptom, and you have been noticing it. It causes many people with lyme to have to give up drinking.

Migrating aches and pains are a clasic lyme symptom. Also, you are experiencing what the lyme docs call lyme rage.

You had 3 tick bites.

You are now having strange feelings, which many lymies have. What you are trying to describe may be a form of depression (on the lyme symptom list) or depersonalization. Many of us have had depersonalization with lyme. It is a very odd feeling and hard to describe.

In addition, you are now having to take naps. See that on the lyme symptom list as "napping during the day."

Then, add to that the positive lyme test early on. I don't think you are wasting your money in seeing a lyme doctor. In fact, I think you should spend time finding the best lyme doctor you can and trying to become his patient.

To get an education on this disease, start with the Burrascano document. Dr. Joseph Burrascano was the lyme guru of the U.S. and the world and has, in the last few years, given up his practice to go around the country and other countries teaching doctors how to treat lyme disease and collecting data to contribute to the knowledge of lyme disease for all of the medical profession.

Most of us have been told things similar to what your docs have been telling you. One doc told me I had let myself get out of shape! I had told him that I had extreme muscle weakness. For example, I had a very difficult time holding my mouth open to have my teeth cleaned.

You see, when a doc is not an expert on lyme disease, he won't think of lyme as a possible cause of your symptoms.

Good thing you found this site. Learn all about your disease so you can make the best health care decisions for yourself.

I got rid of lyme, babesiosis, and bartonella (2 lyme co-infections) by going to a doctor who followed the Burrascano lyme treatment protocol.

It has been 5 years since I completed my treatment and I am still symptom-free, enjoying my life. But, I had to find a doc with a lot of expertise in lyme disease to get cured.

I went through 2 other docs who did not know enough to cure me before I found the one who knew enough.

You can call your local lyme support groups (see Support Groups on left side of page) for names of the best doctors. Then, go to Seeking a Doctor forum here on LymeNet and ask for input on the doctors you are considering. Find one who has gotten a number of people well.

Let us know how things go for you. Wish you the best.

Posts: 9931 | From Maryland | Registered: Dec 2007  |  IP: Logged | Report this post to a Moderator
Haley
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If you have a positive Elisa test you have been exposed.

It's well worth it to see a good LLMD. In the long run you will save time and money.

Go to the section looking for doctors and you may be able to get some PMs about the specific doctor you are referring to.

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Robin123
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I think we have trouble drinking alcohol because the liver is overwhelmed trying to clear neurotoxins from the illness.

And maybe more liver complications too, since it needs enzymes to do its work and our biochemistry gets seriously compromised by the Lyme bacteria.

Yes to the LLMD suggestions - you need treatment!

Posts: 12968 | From San Francisco | Registered: May 2006  |  IP: Logged | Report this post to a Moderator
painted turtle
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What you should do depends on what kind of life you want.

What kind of life you had.

And how much you think it may change with or without treatment.

The alcohol thing is kind of key and I certainly wouldn't blame a sudden intolerance to age! That's silly. I think it is a classic problem with lyme. At a certain point you just can't drink anymore.

If you go to the LLMD, who knows what could happen. The same if you don't. It really depends on you. If you think you really need help, I'd go. If you feel that you have Lyme, etc. and it is not bearable, I would get help.

The problem with just getting by is, it could progress into something worse if not addressed.

At the same time, it may not.

It's all so individual, it's maddening!

But definitely, the sudden lack of intolerance to drinking is a sure sign you may have something going on up there in the brain to do with inflammation.

--------------------
www.lymefire.blogspot.com

Posts: 855 | From United States of Mind | Registered: Aug 2005  |  IP: Logged | Report this post to a Moderator
Wolfed Out
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Just for added assurance.

At one point, I could drink 12 beers and barely have a hangover. Then, I'd have 2 beers and couldn't get off my couch for a day and half.

I'm 26 years old.

Everything you were told in this thread is spot-on. TF gave you some great information to get started into your treatment, because but by what you posted, I'm 99% sure you have been infected with Lyme disease and/or it's co-infections.

Find a good LLMD immediately.

Here is some good news.

If this happened this past summer, you have been infected for less than a year. The longer you've been infected, the harder this disease can be to treat. You are not in the deep end of this category yet.

Get started immediately.

Good luck!

Wolf

Posts: 829 | From MD | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
n.northernlights
LymeNet Contributor
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Lyme MD writes about lyme rage in his blog http://lymemd.blogspot.com
Posts: 366 | From Europe | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
mallai
Junior Member
Member # 24463

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Thanks for the very helpful replies..It's nice to know this site exists with such caring people..As mentioned, I have an appt. with a well known LLMD in 2 weeks..I'll go see him..This is such a nightmare and not looking forward to any of this.. [shake]
Posts: 4 | From Westchester County, NY | Registered: Feb 2010  |  IP: Logged | Report this post to a Moderator
   

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