Newly diagnosed Lymes - HELP!

This is a very long story, but I'll give you the Cliff-note version. I was just diagnosed with Lymes (Fri) after my blood test yielded a "weak-positive" result. My recent visit to the doc was a result of having flu-like symptoms for 2-3 days. probably true...my wife was sick the week before and my kids were sick with me the following week. The difference is/was.....I had been experiencing constant bodyache and joint pain for several months with elevated temp.

I should point out that I removed a tick (or thought I did) back in early November after hunting. I found it, removed it with tweezers and thought that I got him but was always concerned that the head remained. I checked the site repeatedly to make sure there was no dark spot in the site. I got myself a nice bullseye that came and went. I knew I should gone to the doc or at least called it in, but I didn't. I know....very stupid on my part, but here I am in mid-march with a confirmed positive. I still have the discolored nodule on my thigh after 4 1/2 months. I should note that I work in the medical field and definitely know better, but I tend to think that we're the worst patients when it comes to health issues because we know so much <sarcasm>. I've been bit before and have had rashes post bite and never took meds. Blood tests have always come up negative, but I know how I felt and docs are always quick to dismiss that as something else. How could I have it, if the blood test say it's negative??? Well, let me tell ya.....I think I have had it for awhile now and it's not getting picked up fo rwhatever reason.

When I found this site through a google search, a posting came up that I read and immediately said "that's me" ! The posting was from 2007 as I just noticed and the things that poster listed - was almost me. Some of which include:

Fatigue, tiredness, poor stamina

Testicular pain/pelvic pain

Sexual dysfunction or loss of libido

Upset stomach

Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory

Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening

 

I just asked my doc when we spoke on Friday - how am I supposed to know if I have nervous system involvement because my test is a weak-positive? He doesn't really know the right answer and offered to refer me to Rheumatology if my joint pain doesn't get better after taking Doxy for 6weeks.

My question to all you who've been there.....am I totally screwed at this point? Is it likely that i will be back to my former healthy self? I'm 43 yrs old and go through most everyday in some sort of pain. I get out bed in the morning like I'm 85yrs old, very much in pain and tired of not sleeping well. I can't sleep through the night at all and haven't been able to for a loooooonnng time. I'm open to any suggestions or comments.

Thanks for your ear.

Rich

 

Post Edited (pabowhunter) : 3/16/2009 8:00:27 AM (GMT-6)

What is a LLMD? I see that all over this forum. I'm not hip to all the new lingo.

What sort of co-infections are you referring to?

I appreciate the response and want to get up to speed as quickly as I can. I am VERY nervous about all of the symptoms that I've been carrying around, with no clear understanding of why I have them. I used be a VERY active person, but in this past year.....not so much.

Thanks again

Thanks for the info. This forum thing is very new to me, so I'm trying to navigate around as best i can. I'll seek out the sticky thread you mentioned (whatever that is) and read what's there as well.

I know I have a lot to learn and I'm grateful to folks like you to help the newbies along.

Thanks Judy and to all of those kind folks who have posted in reply to my post. As you can tell......I'm freakin out just a little bit. I'm trying to drink in as much info as I can. There's lots of great reference stuff here, so that should help.

I am curious what other lymies feelings are, related to going back to a primary physician with something you've read about here. My doc is the same age as me and I think would be open to it - but at the same time I don't want to be offensive in sharing an article if I think he feels as though I don't trust his expertise. You know how doctors can be.

Thoughts?

pabowhunter for some reason 2 very long replys that I have posted for you have not gotten on the site. They dissappeared right after I sent them. I too am in the medical field and have allot I want to tell you . Please email me at stonescapes@hvc.rr.com

Hey Rich,
Did you find the sticky thread? "Sticky" means it always stays at the top of the list of posts. So if you go back to the main page of the lyme discussion forum, you'll see it somewhere there near the top.

Hey fellow bow hunter!!!

Sorry to hear about your Lyme Diagnosis!!
Are we the same person on opposite coasts? Except I'm female. I just turned 43, I'm an ER nurse (well, hopefully will go back soon?), and bow hunt with my husband. I don't know when I was bitten though and never had a rash. I live in Ca. Been hunting here for about 8 years. Hunted in Nevada 2 summers ago and got cryptosporidium real bad from using creek water for showers. Who knows? maybe bitten there too? I have in-laws in central Pa that bow hunt. I need to warn them more about Lyme Disease!!!

Anyway, this forum is awesome!! They helped me get info to seek out my diagnosis.

Yes I feel 85 y.o. too!!! It will be a slow going process of feeling better, but it will happen! I've been on meds for about 8 months now. I haven't been working since last August and sometimes I worry that my brain might not get back "critical care" standards. But I have faith that I'll be able to stay in nursing of some sort. I think God is re-defining what area of nursing I should be in. I really feel an obligation to get the medical community updated and serious about Lyme prevention, early diagnosis and treatment.

The more informed about Lyme you become, the less frustrating it all is. There's lots of good books out there. Go to the library. I bought some books that I later found there. "Everything you ever needed to know about Lyme disease", "Chronic fatigue, fibromyalgia & Lyme disease", "Coping with Lyme Disease" 3rd edition, and see the documentary "Under Our Skin". They have a website, underourskin.com. When reading stuff about Lyme online, make sure it's new material within the last couple of years. Like everything medical, info changes frequently.

Best of luck to you and God bless- Lisa

ps - think about maybe getting your family tested? IGenX lab tests are good.

hey rich,

  if you have any concern that your family has been bitten, get them tested!!!!

All bites need to be treated profilactically.  I never had a rash, so keep that

in mind.

  Please do find an LLMD.  Lyme can screw with you for years, so don't rely on

someone who doesn't know what they're doing.  This is a systemic infection and

if not addressed properly, it will be very difficult to radicate!  Please, see an LLMD.

My insurance covered almost 90% of the visit.

By the way, you need to be on at least 400mg of doxy daily to be effective.  Go to the ILADS

website and find the Burasscano 2008 Lyme guidelines.  It's a great place to start.

My LLMD treats Lyme and its co-infections til 6 weeks of no symptoms.  So, you will need to be on meds for awhile!  Make sure to read the Burrascano thing. It will really help you figure out what else you need to take;  like acidopholis.

I'm starting to get kinda paranoid about going fishing, hiking, hunting, etc. again.  I just read that someone over by you was just bitten again a couple of weeks ago!  And I really worry about my son getting biten.  I hope this doesn't keep me out of the woods!  How do you hunt with a half can of Off sprayed on you? 

Lisa

Hello pabowhunter and welcome to the forum! I read your post and you should know how EXTREMELY LUCKY you are to have caught this disease at such an early stage! I was bit by a tick almost 8 years ago and have came up weakly positive by outdated and insufficient tests for the past few years, but I have never been acccurately diagnosed with Lymes. I am now a 24 year old man and old feel like a disabled 90 year old man. I am in the process of seeing an LLMD and I cannot stress how important it is that you see one ASAP! Take advice from all of the veterans who made suggestions above and know how lucky you are to have caught this in its' early stages!!!

FMS@23?