Could this be lymes after all this time?

[BretBorth]

I am looking for comments on my situation from those who are familiar with Lymes.  I have been ill now for 12 months after a pheasant hunting trip which I took in November of 2011.  I was cleaning my pheasants when I accidently cut myself with the knife being used.  I continued to dress out the pheasant, getting the slime and blood of the bird on my hands and where my cut was.  The next day (about 16 hours after cleaning the birds) I noticed flu like symptoms coming on....mild fever, malaise, upset stomach and twitching muscles.  I have not felt the same since this day.  I have had persistent fatigue (can sleep a solid 8 hours and still feel dog tired) lightheadedness (had 2 balance tests, both showed the ears to be normal thus suspecting some type of central nervous system abnomality), and no endurance(was doing triathlons and 10k races up to that point).  I have had many tests to this point, and I am shocked that nothing has been uncovered and led to a diagnosis.  The dx I have been given is post viral syndrome.  There is evidence of EBV in my system, but it is not active.  I have had one test for lyme and that was negative.  This is really distressing.....not only the fact that my condition has changed so much and persists this long after the incident, but not knowing what is really going in inside me.  Could it just be coincidence that I became ill after the pheasant deal, or could there be more to this that I need to press my doctor on?  My docs nurse always pulls me aside at my visits and tells me her opinion is that some type of fluid or parasite from the pheasant is to blame for the way I am feeling.  Yuk.  Any opinions would be so helpful for me!!!

[nutrinut_bob]

A quick googling shows pheasants to be direct carriers of Lyme, as are the grey squirrels I often hunted and cleaned, like you, without gloves, as a youngster.  Better testing is order, I would think.  Even in the above statement, there is some controversy as articles can be found which say pheasants are not carriers.  Try diseases of wild pheasants.

[Ricobord]

If you do get tested for Lyme, ask your doctor to make sure they run the Western Blot, regardless of the screening test results.  When I was first tested, I'd had symptoms for 15 months. The screen was negative, so, like most labs, they didn't run the Western Blot. Doctors told me I didn't have Lyme, even though the CDC says a negative cannot be used to exclude it. I finally paid for testing at IGeneX where my IgM Western Blot was negative according to CDC standards, but postiive according to IGeneX.  I also tested + for Bartonella.

The following article was really helpful for me to understand why I tested "negative" even though I do indeed have Lyme. It is written by a scientist and former pharma sales rep who had Lyme + coinfections for about 13 years. He's got an incredible story.  You can Google him for more info.    http://www.canlyme.com/labtests.html

Here's an article by an MD at Boston U. who gives a good overview of the disease, testing, treatment, and the controversy. This is a 2002 verson.  I think there's also a 2007 updated version out there.  http://www.canlyme.com/donta.html

[bcb1200]

I concur with Jackie

It definintely sounds like lyme or other tick borne illness.   I've had all of the symptoms you describe.  Like you, I also tested negative and was told it was in your head.

I would do a web search for Dr. Burrascano's Treatment Guidelines and read up..it is by far considered "The Bible" of Chronic Lyme Treatment.  

Also..check out the 2009 documentary called "Under Our Skin" (do a web search) and see hundereds of folks like you describe similar stories.  It also shows several LLMD's and follows patients through treatment. Most get well, but it takes a long time.  You can watch it online on several sites..some free or free if you have a subscription to their service.

I've been in treatment (multiple antibiotics and supplements) for 19 months and am 95% back to my old self.  I hope to be 100% in 2012.

This site is a good resource and there are also others out there.  

[JackieCalifornia]

From my reading and experience, Lyme messes with the whole endocrine system, including hormone levels.  Those with Lyme often have chronically low body temperature and feel chilly -- which is really confusing (including for the docs) if you also have a co-infection like babesiosis that causes intermittent *fevers* too.

'Tired and spaced out' is exactly how I felt.  Couldn't think, couldn't remember much.  I described it as feeling like the flu and a hangover at the same time, only neither one went away.  

I think of Lyme as that jerky cousin who visits for a weekend and then never leaves ... and goes about re-doing your house to his own comfort:  messes with the thermostat, keeps you up all hours, mucks with your appetite, and generally makes you want to move out of your own house.

So:  Lyme definitely effects the endocrine/hormonal system.  It's hard to get a doc to stop focussing on one or two symptoms and see the big picture, because much of the medical establishment is still in the dark about it all.

I don't know that testosterone supps will hurt; I'd guess not, but again:  I'm not medically trained.  I took the hormone supps the doc gave me, didn't hurt to do so in my view.  

Do find a Lyme specialist for an evaluation!  A year is enough of being miserable.  Stay in touch -- let us know how you do.

[BretBorth]

Thank you so much for the information!  I will need to do this right away.  It confounds me that a year later I am still have so much trouble with all this.  Being tired and spaced out all the time is getting very depressing.  My doc is starting me on some testosterone injections to see if that helps.  My endocrine system is suspect as all my hormones are at the very low end of the "normal"range.  Curious if Lymes can infilitrate that area of the body.  I just can't believe how energetic I was prior to this...and now feel like I am 65 versus 48.  I have a wife and 9 year old daughter, so life goes on whether I feel alright or not.  Plus working....tough deal.  So, can lymes mess with hormones in a guy?

[JackieCalifornia]

and PS, if you're up for reading, there's a book about Lyme with the unfortunate name of 'Cure Unknown' by Pamela Weintraub, now in paperback and on Amazon.  She is a trained medical writer and so knows her stuff.  She and her family lived in leafy Connecticut and got Lyme, with different symptoms in each of them (which is confusing to nonLLMDs, but is common), and she combines their personal story with portraits of a few other individuals and also the backstory of the mess the medical community is making of Lyme diagnosis and treatment.  The biggest beef I have with the book is the title, because the cure IS known for the disease, tho it's usually not a quick result for reasons stated above ... perhaps she is alluding to the 'disease' being the willful ignorance of the medical community at large.

A good Lyme-aware doc will not assume you have Lyme, but will consider it in the differential diagnosis with other possibilities.  That and the treatment are what an LLMD will offer that a nonLLMD will not.  I hope you don't have Lyme, but if you do, I hope you get it diagnosed and treated pronto.  Go for it!

[JackieCalifornia]

Welcome to MedHelp Lyme.  Good for you for continuing to look for answers!  No one here is medically trained that I know of, so take it as commentary but not medical advice --

Some comments on your comments:

You say:  "I have had many tests to this point, and I am shocked that nothing has been uncovered and led to a diagnosis."

That's the state of medicine when it comes to Lyme and other diseases/infections carried by the same ticks (and perhaps mosquitoes, but that's still developing science.)

You say:  "The dx I have been given is post viral syndrome.  There is evidence of EBV in my system, but it is not active."

The first researchers who began to study what was casually referred to as 'Lyme disease' (because of a cluster of cases around Lyme CT) focussed on specific symptoms such as swollen knees and established the diagnostic criteria based on their early research.  Those researchers are still high up in the Infectious Disease Soc'y of America (IDSA) and, out of what I take to be pride, have not updated their research and understanding.  Unfortunately, these same IDSA standards are the ones other MDs follow -- on the theory that infectious disease specialists are the best to know about ... infectious diseases.  Other docs, who have continued to update their research and findings, have split off to form ILADS, the International Lyme and Associated Diseases Society, which is the main voluntary group for Lyme specialists.

The IDSA docs, who early on said (and still continue to say) that two or three weeks of antibiotics will cure Lyme, contend that any symptoms continuing after treatment are not an uncured infection, but are your immune system's overreaction to an infection that is no longer there.  Lyme is bacterial and not viral, but the concept behind 'post viral syndrome' is the same reasoning nonLyme docs use to say that if you still have symptoms of Lyme after a few weeks' treatment, you're not sick, it's just your immune system overreacting.  That sounds consistent with your docs saying you have a vague post-viral syndrome.

You say:  "I have had one test for lyme and that was negative."  

The tests nonLyme docs give, called Western blot and ELISA, are not very accurate for a number of reasons, but nonLyme docs rely on them as the absolute last word.  A Lyme specialist knows to read the test results in light of your symptoms and history, and also to use another test called PCR, run by IGeneX Labs in California.  W.blot/ELISA tests look in your blood for antibodies your immune system makes against the Lyme bacteria, but Lyme uses sneaky 'cloaking' devices to evade the immune system, so no immune response, so negative tests.  Lyme also has a long reproductive cycle compared to most bacteria, but the human immune system is set up to stop reacting after a relatively short time, on the theory that all the bad bugs are dead.  Lyme tho just keeps rolling.  

(If that sounds odd, think about tuberculosis and leprosy [Hansen's disease], which are both bacterial as is Lyme, and they have a very long reproductive cycle too, which means treatment normally takes at least 18 months, from what I read.  Therefore, two or three weeks of antibiotics for Lyme which shares this slow reproductive cycle, just won't cut it, never mind that the bonus diseases the Lyme ticks often carry often need entirely different meds from Lyme.)

You say:  "This is really distressing.....not only the fact that my condition has changed so much and persists this long after the incident, but not
knowing what is really going in inside me."

I hear you.  We all do. The important thing is to keep plowing ahead.

You say: "Could it just be coincidence that I became ill after the pheasant deal, or could there be more to this that I need to press my doctor on?"

Sure, coincidence happens, but in your situation, I'd find a Lyme specialist for a work up.  A nonLyme doc will not know how to proceed, because it's not part of his/her training.  I personally when through 20 docs, and only one of them had the wit to test me for Lyme ... which came back positive!  So what did the doc say?  "Oh, you can't possible have Lyme.  I have patients with Lyme, and they are all near death."  Gee, thanks for that.  I took that positive test result to a Lyme specialist and started on the road to being well at last.

You say:  "My docs nurse always pulls me aside at my visits and tells me her opinion is that some type of fluid or parasite from the pheasant is to blame for the way I am feeling."

Your doc's nurse would get fired for giving you medical advice, particularly medical advice that contradicts the doc.  The nurse seems to be nudging you to go find a Lyme doc.  That's what I would do also.

You say:  "Yuk."

Amen.

As to finding a Lyme specialist, we Lyme patients often call them 'LLMDs', short for Lyme-literate MDs, meaning docs who think bigger thoughts about Lyme and its co-infections.  It's not a formal title, and LLMDs don't call themselves that, but you'll see the term used here and elsewhere as a handy identifier.

So.  If you go to the ILADS [dot] org website, I understand there is a referral function there that will give you names of docs in your area who are members of ILADS.  Bear in mind that Lyme is the wild West of medicine, and there are quacks and egomaniacs among LLMDs as among other groups ... That's one reason nonLLMDs sneer at LLMDs:  because it's a messy band of docs trying things outside the 'standard' and so has some oddballs in its membership.  Use your common sense, and if you feel uncomfortable with the first one, try another.

Also I just search for:

llmd minnesota

-- and got some interesting links.  You'll find lots of interesting things that way.  An odd way to look for a doc, I know, but welcome to Lyme lands.

You may NOT have Lyme, but could have other infections that nonLLMDs don't even think to look for, or don't take seriously.  Been there, done that.  

Plow ahead:  it's worth it.  Stay in touch, let us know how you do, okay?  Best wishes to you!