posted
after 33 days of testing the doctors told me that I have FUO (fever of unknown origin) and said I most likely just have a virus that is lingering.
I have seen my regular doctor and an infectious disease doc.
In all the tests they have done they came up with the following:
I tested positive for lyme disease but they said sense this is not the season for it that I dont have it and they cant see how I tested positive.(they will not follow up on this).
CT scans revealed nodules on my thyroid and a lesion on my liver. They said neither of these would cause the fever, fatigue and weakness.(again they will not follow up on this).
So bottom line should I take it as a virus? or get a second opinion?
I should also add that they said my WBC count was actually lower than normal. What does this mean?
posted
I would get a second opinion. NOt sure if it is Lyme but it could be, or it could be something else too. Lyme loves the thyroid and often causes nodules. Thyroid cancer is very rare so that is 1 point for Lyme there. Lyme does cause frequent low grade fevers but I have not heard of 33 days in a row.
Posts: 649 | From United States | Registered: Dec 2003
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ByronSBell 2007
Unregistered
posted
your body is fighting someing that is not going away, couldbe lyme
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posted
You Said " I Tested Positive for Lyme disease". Please go to Seeking a Doctor section and find a good llmd ASAP.
Posts: 263 | From Georgia | Registered: Feb 2006
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LisaS
Frequent Contributor (1K+ posts)
Member # 10581
posted
I had a fever for three months and then my legs started going numb. Thats when I was finally tested for lyme disease.
quote:Originally posted by lymedesign: You Said " I Tested Positive for Lyme disease". Please go to Seeking a Doctor section and find a good llmd ASAP.
ditto
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Welcome Proud...
FUO is a common catch all and often people with Lyme are stuffed in that category and told to go home and wait it out. BAD NEWS when it is Lyme.
The old "lingering virus" song and dance is another crazy assumption they make and toss in our faces too. Give me a BREAK! Do they REALLY think we are going to swallow that garbage?
The fact you have a positive Lyme test indicates you have Lyme. Unless you believe someone could be a little bit pregnant?
They said it is not "the season" for Lyme?
Tell them ticks are active with an 80 percent snow cover on the ground... and that EVERY month of the year is a Lyme month. This isn't eating oysters where you can only do it in a month that has a "R" in it.
As a matter of fact.. NJ already has 25 reported cases so far this year.. for January and part of Feb. Note that for every ONE case reported... at least 10 are being missed (CDC stats).
So there have been at least 2,500 new cases in NJ THIS season already.
You also have a low white count which could indicate you not only are fighting a Lyme infection but possibly another tick borne coinfection such as Babesiosis... and/or your body is tired of fighting! Other reasons too.
Bottom line...
You have a positive Lyme test, 3 of the most common Lyme symptoms (fever, fatigue and weakness), you live in an endemic area that is overwhelmed with Lyme, your doctors are infamous for missing the diganosis there... and they can't find anything else wrong with you.
Follow your brain and your instincts. You are on the right path.
I am glad you came here to do the thinking for them cause they are not famous for doing their own.
Dump the Infectious disease idiot ASAP... as he has no clue and if he did know you'd have to hang him by his feet over a snake pit to get him to admit it now.
Keep in mind the Infectious disease ducks are the reason why most of us here are chronically ill. If you look up the word "wrong" in the dictionary... you'll find their pictures.
If you want to hear how bad this problem is from the ones living it and who have been in your shoes...
Here is a short video trailer of the upcoming movie about Lyme- the untold truth- called "Under Our Skin"... to be released in NY in March.
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Hi, You need to see a Lyme literate Md and be tested for all the tick borne disesases. Babesia is a co-infection of Lyme and you can run fevers. Do you have other symptoms on this list: http://www.canlyme.com/patsymptoms.html
If your blood tests are normal and you are not well, Lyme must be considered, it is more common than you think and mainstream Md's have ZERO knowledge of this disease.
If you need help finding an LLMD you can p/m or reach me through the Contact link through the link at the bottom of this page.
posted
My daughter has been in treatment for lyme for 5 years and never had a fever beyond the original unspecified "virus", and even then, it went away just as a typical virus does...only it returned...and repeated this cycle for a while. NOW after progressing on the Cowden Protocol too quickly, she has a fever - now in her third week! Go figure!
Please do find an LLMD! Good Luck, and keep us posted!
Posts: 422 | From Herndon, Virginia | Registered: Oct 2005
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-------------------- Take Care, DakotasMom01 Posts: 371 | From NJ | Registered: Dec 2007
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
I can see everyone else has this covered, but if you need to hear it all again just let me know!
We've also been having, until fairly recently, quite warm weather. What area of NJ are you located in? If it has a time that you definitely CAN'T be bitten, I'd like to move there.
Did you recall a tick-bite (any time over the last 10-100 years, assuming you are not over 100)?
Had you been taking your temperature daily all along, or did you just start 33 days ago?
What prompted you to start monitoring your temperature?
I believe most often temp is sub-normal in lyme, but co-infections?!!!! Oh WAIT!!!!! you must be in one of those tiny little areas where there is no Babesia!! Oh Wait, I'm in one of those areas & I HAVE BABESIA!!!!, So did my next door neighbor.
The test is Babesiosis IgG/IgM AB. Don't let them order the B. Microti ID, it needs to be repeated every 6 hours, consecutively for 36 hours to even remotely mean anything.
There are also so many strains of Babesia & Bart that the tests can't detect them all.
Please go to a good Lyme-Literate physician.
These doctors in this State MAKE ME SICK!!!!!!
I'm so sorry you're going through this.
Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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posted
Thank you all for your help, I hope I can get to see an LLMD.
I am active duty military and dont get alot of say in who I get to see. But I will submit a request to see a new doc anyway, the worst they can do is say no I guess.
I also wanted to clarify a few questions you all had.
The way the docs explained it to me is that there are 3 perameters that I have to test positive in (blood work)and I only tested positive in 2.
They also said because I never remember being bitten or having the bullseye rash that all these things suggest I dont have it.
I did my research and know that not all Lyme patients have gotten a rash and because the ticks are so small that you may not notice one on you.
I live in central Jersey and our base is nothing but a giant forest and ticks are all over the place.
Upon checking into the command they told us the procedures for taking a tick we have been bitten by into medical to have it tested.
(I guess it is easier to diagnose a deer tick than it is a human. LOL!)
I started monitoring my temp 33 days ago, when I started feeling really run down like I was comming down with something.
Until the 10 day point I didnt think anything of the fever.
But I thought I better go see the doc just to be sure, I had never had a fever longer than 7 days let alone 10 or more.
After this appointment I took my temp daily and just thought wow I wonder how long this could go on.
Still not worried until about the 20th day, then I started to panic and have only felt progressively worse since.
Thanks again and I will visit the sites suggested and find an LLMD.
Dx: Lyme & Bart April 2008. currently on plaquanil, Roxid and Sulfameth. Posts: 89 | From Manalapan, NJ | Registered: Feb 2008
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daise
Unregistered
posted
proudtoserve,
You tested positive. Please take, especially tincups post, to heart.
Your docs, so far, are quacking, quacking, quacking. We call 'em ... ducks. Quack. Ducks get rich. Quack. And laugh all the way to the bank. Quack-whack, quack.
It's profits over patients.
Welcome to Lymeland.
Also, see "Support Groups" for people to help you find an LLMD, above and on the left menu.
I wonder if others are thinking what I am when they read your post. I know I'm hyperaware of Lyme and it's dangers, but the that doesn't change the fact that Lyme disease is SOOOOOOO often overlooked.
The truth is that often times people have Lyme even with a negative test result. The fact that your's was positive is equivilant to what someone said earlier, "being a little pregnant".
I hear a story like yours, and I have to fight the urge to sound like a know-it-all. I just so desperately don't want you and others to waste all the time we did chasing down symptoms.
We had fevers and weird test results for a couple of years before we made the connection. You're really smart to check here first.
I hope you find a good LLMD and keep us posted. I'm sorry you're on this path, but there's a lot of great help if you look hard enough. It appears as if you have that aspect covered. Posts: 44 | From Prairie du Sac | Registered: Jan 2008
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hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Any chance you could get a copy of the test results so you can tell us exactly what was done? This is possible and desirable with doctors, to get copies of all test results. However, I don't know if the military permits this.
You may have to go outside of military medical facilities to get help for this. We have had other military people here who have also run into a roadblock.
The most important thing about lyme is to catch it early enough. The longer it goes untreated, the harder it is to treat. So, time is of the essence.
If you want to try again with the military docs, maybe you could print out the new surveillance criteria from CDC, and also an article showing ticks are active in winter too. I will post some links for this.
--------------------------------------------
"Abstract: Host-seeking activity of adult blacklegged ticks, Ixodes scapularis Say was monitored by flagging during winter months in Beltsville, MD. Ticks were active many days during January and February, the coldest months, with some captures made when there was 70% snow cover and temperatures as low as −2�C. Substantial numbers (70-90 ticks/h of flagging) of adult I. scapularis were captured on favorable days in January and February. "
AND, see this thread for the change in surveillance criteria for testing. New this year, so your docs may not know it. However, if you have a positive test (what kind?), you are positive regardless of the change CDC recently made.
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