Lyme disease/Flu-like symptoms...?

Question

First post, and I've been trying to find out more about this strange sickness I experience maybe once a year.  It usually starts out in the morning with an overall exhausted feeling.  Gradually over a period of about 4 hours or so I will feel more light-headed.  My back with start to ache then my hands, inner-elbows, knees, and feet.  My back seems to ache enough to make me squirm all day, constantly, to try and get more comfortable.  I will get a fever and some chills.  It's so strange and I feel so bad that I have a REALLY hard time staying focused on anything.  By the time I get home I just feel like getting in bed and sleeping.  In bed I will have the chills and fever, getting hot and sweaty. 

By morning I am almost 100% fine.  In fact, by the time I get to work I feel completely normal.  This happened a week or so ago so I can almost remember exactly how this felt... enough for me to remember to research the issue.  Some say it sounds like Lyme disease, but this has been going on for what seems to be at least 9 - 10 years with the sysmptoms no worse than they started out at. 

ANY ideas at all?  I don't get sick at all the rest of the year, and honestly this issue doesn't happen every year... it may happen once a year for a couple years then not show up for another couple years. 

Thanks for any help anyone may have!

Thanks2 · Answer

Google -- "Cold Sore" and check out Mayo Clini'c's site.

"Cold Sores -- Signs and symptoms may not start for as long as 20 days after exposure to the herpes simplex virus, and usually last seven to 10 days."

So.. Cold Sore = herpes simplex virus

Which according to IGeneX can indicate a positive for false positive for Lyme..
on the Western Blot.

patsy10 · Answer

I agree.  I wonder how much it cost for me to see 5 neurologists, a rheumatologist, have multiple MRI's and an unnecessary surgery (I was told my neck was causing all of my symptoms) It was the surgery that made all this come back out again.  The oral antibiotics were much less and they worked!

PlateletGal · Answer

When my insurance company had a third party marketing firm to find out if I was happy wtih my insurance coverage, etc., the guy asked me if I had any complaints. I told him that insurance companies should be forced to list CFS, fibromyalgia and lyme specialists on their website because most physicians don't care or want to deal with these illnesses. I also told the guy that, if they followed my suggestion, it would save them a TON of money.

kitty9309 · Answer

wonko said:
"I have a feeling that even if I did get my insurance-covered physician to further consider Lyme, I would have not gotten sufficient treatment. "

I totally agree. 

I did submit my bill for the first visit to my LLMD. I got about 1/3 of what I paid out of pocket reimbursed. I have BCBS with a $1000 deductible and no rx insurance. I have spent much more over the years out of pocket for tests the insurance company didn't argue. Strange. It would have been cheaper for them in the long run to pay for my LLMD visits. Especially considering I have been sick for 14 years. 

Not to be assume anything, but if you can find a LLMD and have available credit on a credit card, that is what I would do. I wasted 14 years listening to doctors and insurance companies.

PlateletGal · Answer

It certianly sounds like you have an infection (which is common in various syndromes and autoimmune conditions). If any of these symptoms sound familiar to you, talk to your physician about CFS. Of course other possibilties need and should be ruled out first.

A CFS diagnosis should be considered in patients who present with six months or more of unexplained fatigue accompanied by other characteristic symptoms. These symptoms include:

cognitive dysfunction, including impaired memory or concentration 
postexertional malaise lasting more than 24 hours (exhaustion and increased symptoms) following physical or mental exercise 
unrefreshing sleep 
joint pain (without redness or swelling) 
persistent muscle pain 
headaches of a new type or severity 
tender cervical or axillary lymph nodes 
sore throat 

In addition to the eight primary defining symptoms of CFS, a number of other symptoms have been reported by some CFS patients. The frequency of occurrence of these symptoms varies among patients. These symptoms include: 

irritable bowel, abdominal pain, nausea, diarrhea or bloating 
chills and night sweats 
brain fog 
chest pain 
shortness of breath 
chronic cough 
visual disturbances (blurring, sensitivity to light, eye pain or dry eyes) 
allergies or sensitivities to foods, alcohol, odors, chemicals, medications or noise 
difficulty maintaining upright position (orthostatic instability, irregular heartbeat, dizziness, balance problems or fainting) 
psychological problems (depression, irritability, mood swings, anxiety, panic attacks) 
jaw pain 
weight loss or gain 

http://www.cdc.gov/cfs/cfssymptomsHCP.htm

wonko · Answer

I echo patsy10's remark.

In my case, my regular (as in, covered by my insurance) physician refused to follow my instinct that I could have Lyme.  I had two negative ELISAs in Jan and July '08.  In Sept 08, my physician told me there was nothing more she could do, and that she would not order any additional testing for Lyme out of concern of getting a false positive.

I didn't waste too much time trying to understand her actions.  Instead I researched online and found a local doctor, who doesn't take insurance, who treats Lyme patients.  His approach is to treat with antibiotics until after symptoms resolve.  

I have a feeling that even if I did get my insurance-covered physician to further consider Lyme, I would have not gotten sufficient treatment.

You seem to feel less urgent about your situation, and if your health allows it, by all means keep working with your insurance!  I hope you are able to get the proper attention and treatment.

patsy10 · Answer

I think most of us have been "blown off" by  doctors.  It's very frustrating.  It's not just your medical provider.  Hang in there.  Thanks for updating us.

dallas4u · Answer

Quick update, in case anyone gives a ****.  Kaiser Permanente is a pain to work with!  I knew my primary care doc would try and blow me off after explaining my symptoms and that I thought it would be good "preventative maintenance" to just do the tests.  He just kept telling me he didn't think anything was wrong.

So... I asked them to change my primary to another doctor at another location.  After a day they finally did.  I then sent him an email copying all correspondance with the last doctor and, of course, he's out until Jan 26th... so I have to wait.  Not a huge deal as I'm not seeing any of the symptoms right now (that I'm aware of), but I really wanted to schedule something as soon as possible (since I did see the symptoms about 2 weeks ago).  Oh well.

patsy10 · Answer

It really would be good idea to get tested for it.  Although, testing is not very reliable.

dallas4u · Answer

Hey Patsy, yes... I completely understand, and that scares me a bit, too!  I don't want something just showing it's face once a year when my immune system gets a little down (it always seems to show up when I feel a bit sick, as well as me getting a cold sore... I've gotten those since I was a kid).  When I think about it though, and I could be trying to make more out of it than it is, but it is possible I've been feeling some of the effects of the disease for a while now... but I've also been sick for what seems like the past 2 - 3 weeks off and on, so my brain may be a bit foggy as to what I've felt like normally.

I've asked my doctor if he can schedule me in for LD and Cortisol testing... just waiting to hear back from him.

patsy10 · Answer

Welcome to the forum. From my own experience I have found that this illness affects me on a daily basis. I've never had a completely normal day. If your symptoms are only present one day out of the year I would doubt lyme but I am not a doctor. It seems to be a chronic, ongoing illness for me.

dallas4u · Answer

Hey... I'm up for anything, really.  I've been putting up with this for almost 10 years now... sometimes once a year, sometimes twice, sometimes not at all, but I don't want something to build up and end up getting too serious to treat reasonably in the long or short run.  Plus, my wife and I are considering having children this year, and I don't want to pass anything on by not treating it early enough.

kitty9309 · Answer

It also sounds like possible adrenal problems. 

Have you had at least an AM Cortisol level checked?

Just a thought. My endo thought this could have been my problem at one point, so it is one I remember.

dallas4u · Answer

Thanks.  I seriously can't think of a specific time something would have happened.  I think I can somewhat remember the first I time I felt the symptoms and I wasn't sure what the heck was going on.  For me, though, this issue only seems to happen one single day, maybe 15 or so hours... it's hard to tell.  I know I start to feel it in the morning and it runs through the time I usually go to sleep, but by the time I wake up I feel almost 100% better.

Maybe this isn't Lyme disease... maybe it is something else with similar symptoms.  Not sure, and it make it harder that the symptoms aren't around most of the time.  I may just start taking aminos, watching my diet, and exercise a bit more/better and see where it takes me.

wonko · Answer

Of course I can't diagnose you, but welcome to the confusing world of trying to figure out Lyme disease!

I noticed I was getting sick in summer '07, and have never noticed a tick bite or rash.  But in hindsight, I do look back and wonder if I had a less acute or more dormant infection for longer than that.

A lot of Lyme is, from my point of view, shrouded in confusion.  I've come across the idea that some people may be able to better fight off the infection than others, and that surely doesn't sound impossible to me.

If you do have a currently naturally controlled case of Lyme disease, I would still think it would be worth pursuing testing and/or treatment, as your ability to keep it at bay could be precarious.  It seems lots of people sick with Lyme can trace it back to a triggering event.  Of course a tick bite/rash is the calssic trigger, but other people (self included) can trace their illness to a stressful and/or traumatic event, an unrelated illness, injury, etc.

dallas4u · Answer

Oh, I see you're from McKinney.  I'm actually from Plano and my wife and I went to school at Stephen F Austin in Nacogdoches... lots of forest in that area of east Texas.  Again, very possible something could have happened there.  We adopted a dog while there that was COVERED in ticks... so they are plentiful in that area.

dallas4u · Answer

Hey Erica,

No bullseye rash that I remember... but I must say, this has been going on for around 9 - 10 years.  I live in Portland, OR now, so no real threat of ticks (we do have trees here, but there isn't a tick threat really).  Now, I've been in Portland for 6 years, but I'm from Texas.  I grew up in a few different areas in Texas (although mainly the DFW area), but I did spend a year or so in college in east Texas which is forest-y... and this would have been about 11 or so years ago.  It is entirely possible I could have been bitten by a tick but not had it imbed in to my skin as I don't remember ever getting a tick bite.

I'm not really sure what else to think about this.  I've been dealing with it for the last 10 years, and it isn't an issue 364 days out of the year... but that one day is literally a pain!  The symptoms seem so simliar to Lyme disease that I had never thought of it until my wife brought it up a couple days ago.