Blood test normal

Good afternoon y'all!

I am brand new to this forum, and have read all the "Read This First" entries which were all extremely helpful. Thank you for posting them as I am much much more informed on Lyme Disease now than I was just a few days ago.

First, my story.

I am 39 years old and an avid runner/hiker. While hiking in Lake Tahoe on June 28th I noticed a weird looking (what I thought was a) scab on my right ankle. I didn't think much of it and it stayed the same for a couple days (I think as I didn't really pay much attention to it) and then it just kind of fell off which I thought was weird.

about a day later the site of the "scab" was raised and white while surrounded by red, though it didn't look at all like the classic EM rash, but maybe since it was on my bony ankle there wasn't enough meat to make it (I don't know, I'm just guessing).

While weird, at the time I thought nothing of it. I figured it was a bad mosquito or spider bite or something.

Fast forward two weeks and one morning I woke up with a horribly stiff neck, which I have had before and usually last a day or two. This one lasted... well, I still have it though it is pretty much my entire back now. It has improved a bit as far as the stiffness goes, but the achiness and pain is just as bad.

Then to top it off I started getting really bad headaches and sensitivity to light. Then, last week I became EXTREMELY fatigued: to the point of going to bed every night between 6pm-8pm and waking around 7am and still feeling totally spent. I am not kidding. EVERY FLIPPING DAY last week. Its a bit better this week but not much.

The last straw was my heart. For no reason it started beating really hard, like shake the bed hard, even after laying down for hours it would still do that. Plus, there is a tight/pressure/almost pain feeling in my chest that has hung around now since last Friday. On top of that I've been getting increasing pain in my knee and hips. Plus chills and sweats. However, as far as I can tell I haven't had a fever and like I said earlier have not had the classic EM rash.

Back to the present...

My doctor ordered three blood tests on Monday, including a Lyme Titer (which takes 5-7 business days for results).

The test that has come back so far all showed normal, but I wanted to ask a couple things (sorry it took so long to get to the point):

1. Will anything but the Lyme Titer be abnormal if it is Lyme Disease?

2. If I had the same Metabolic Panel blood test done last year (which I did) and compared the results, would there be anything that might show something going on even if results are within normal limits?

 - For example, while many of the results from last year were similar to Monday's results, there were some that changed and I wasn't sure if that really means anything. Here are some examples of the changes: Alkaline down 20 U/L, ALT down 10 U/L, AST down 5 U/L, Calcium down 0.4 mg/dL, CO2 down 2 mmol/L, Creatinine up 0.13 mg/dL, GFR down 15, Potassium down 0.6 mmol/L.

They ordered a Complete Blood Count but the sample drawn on Monday apparently clotted up so I had to go in again this morning so they could redraw it. Hopefully those results will post later today.

Again, sorry for the dissertation. Just curious if anyone has any ideas. Like I said the tests all came back within normal ranges so none of these results were flagged and my first inclination was to just forget it, but I want to be sure nothing is missed as this whole thing has me and my family worried.

Also, given my story/symptoms how likely do you think what I have is Lyme? Did everyone on this forum have a fever and the EM rash?

Thanks for any help and advice!

Thanks for that info stacestar!

I guess my questions are a little too involved and I should probably stop worrying about that part and worry more about getting the right tests done and seeing the right doctor.

So, if the test is negative (or positive even) do you think I should still go find an LLMD? How would I find out if there is such a doctor in my network? My insurance will only cover Sutter Health (Sacramento area) doctors so I hope there is one in that group. I would also need to talk my PCP into getting me a referral since I have an HMO and cannot self-refer.

Anyhoo, what a mess. This whole process is really frustrating!

Just got the Complete Blood Count results and surprise they're all normal. Not sure why I'm angry, but it'd be nice if there was some tangible lab proof that something is wrong.
Still waiting on the Lyme Titer results.
Anyone have experience with that test?

Thanks Roxie.
Guess I'm lucky to find all this info early (I've only had symptoms for 3 weeks now).
My frustration is a carry over from a previous problem that went undiagnosed for 5 years, even though I told doctor after doctor that something was definitely wrong.
I let them convince me it was all in my head. My fault I guess.
Finally got them to order an MRI after 8 "negative" X-rays in those 5 years which showed it wasn't in my head, it was in my back.
Anyhoo, I appreciate all the info and the support.

Thanks Traveler!

And I just ordered a testing kit from Igenex in preparation for the Lyme Titer not showing anything (or even if it does show something). So, hopefully I can get my PCP to sign it so I can get the blood drawn and then I might just drive it to Palo Alto (only 2 hours from me) and hand deliver to Igenex just so I am positive it gets there in one piece.

I heard the tests are approx. $300. Does anyone know the exact prices? I know it'll probably say on the test kit but I am really curious. I was thinking about ordering the Lyme and coinfection panels. Any suggestions?

hi again jeffissick?

That's great that you're getting the Igenex test.
My son did the basic test with them, just for lyme, the western blot. That was $200.00. His llmd also recommended at one point the co-infection test for Babesia and Bartonella, and the one she recommended for both, was $280.00 altogether. We haven't done the co-infection tests, b/c he's doing so well now.
I'm pretty sure there are several different prices, depending on which tests you go with.
Even the Igenex can be negative. My son's first Igenex western blot was technically negative, but showed evidence that lyme was most likely there. Then he was retested a couple of months later, again with Igenex, and it was positive that time.
You're on the right track and hopefully able to get this treated soon! That's great!

Can anyone let me know if the "Lyme Titer" which I am waiting on the results from is the same as the ELISA test for Lyme?

Anyone with LD have experience with a Lyme Titer test? If so, was yours positive, or in other words, did that test by itself confirm your diagnosis?

I keep entering in "Lyme Titer" in Google and cannot find definitive information on it so I am guessing there is another, more common, name for it that I could search for instead?

Thank you in advance! I REALLY appreciate being able to ask so many questions.

Traveler - have you ever heard of the bite spot described the way Jeff does? I don't have enough knowledge about this but I would have thought spider, just like he did.

Thanks RTF and Traveler (again). You are a wealth of information and I really appreciate it!

As far as the site goes and the original "scab" after my Lake Tahoe hike, I typed in "tick bite" into Google images and there were a few that came up looking just like mine, but I know that in no way means it was definitely a tick bite. The best way I can describe it was it looked like a semi-healed shallow stab wound, like I was stabbed with a tack. The site itself was red/purple/black and the scab was pretty small once it scabbed up a couple days later. Then the site was a raised white "bump" the size of a pencil eraser surrounded by a red inflamed area approximately 2-3 inches in diameter which took about 10 days to heal, rescab up and heal. You can still see where it was, but it is no longer red. Just normal skin color.

However, my symptoms continue to progress. I am getting more achy, especially in my spine/low back. Yesterday, there were a couple times I had extreme difficulty walking due to back pain. I already had back pain to begin with and all of this crap has intensified it by 10.

Plus, and this is the more disturbing of my latest symptoms, I have become rather forgetful in the last couple days. To the point where I sometimes have trouble remembering things like what city my siblings live in. This is the most scary symptom so far. My grandma has Alzheimers and my biggest fear is literally losing my mind and memories. I know Lyme, or whatever I have, isn't at all like Alzheimers, but the fear of losing memories is still there. Our experience and memories help make us who we are and losing those means losing ourselves.

Does anyone else on this forum with LD have memory issues? Does it get better? Any news/info would be greatly appreciated as this is really starting to scare the crap out of me.

Thanks and I really truly appreciate forums like this where I can get some REAL advice and information from people going through it. Thank you! Thank you! Thank you!

Thanks RTF.

Its good to know that if this is LD that I caught it early. My biggest hurdle is confirming what is going on right now. Though I highly suspect LD, I am not positive and probably won't be until I see some test results from Igenex.

Jeff-

Can you possibly find another Dr if yours isn't treating you? Sacrameto Ca area? From what I have read here and based on my own experience- and Traveler please correct me if wrong - regardless of the overall negative or positive 'result' from the Ingenix tests, if your western blot tests showed a presence in any of the bands and the CD57 came back with a low count (mine was 37), Drs that are trained to read the results will diagnose you as suggestive of Lyme and start you on Doxy or some kind of antibiotic right away. I have talked to people that are in this new stage like you that only need a month or two of antibiotics compared to others.

Thanks Traveler. Fortunately my memory issues are nowhere near as bad as yours were. I am so glad you had memories recovered with treatment.

If I have the tick bite date correct (if it was even a tick bite), I am currently in my 7th week post-bite. Some new symptoms include ear pain and ringing, mild dizziness, appetite changes, insomnia and a depression like feeling.
This is on top of the existing EXTREME fatigue/excessive sleepiness, body aches focused in my back/knees/hips, stiff neck & back, headaches, sensitivity to light, heart palpitations and chest discomfort.
I'm a mess. The worst part is the fatigue because I am losing time with my family. I can deal with all the other crap.

I have another appointment with a different doctor scheduled for next week so we will see how that goes. I am hoping he orders a Western Blot and PCR so we can maybe get this thing identified in a lab. So far they still have only done the Titer/ELISA which was negative.

Thanks again Traveler. Unfortunately money is EXTREMELY tight right now and there are no LLMDs in my area who accept my insurance/HMO.

I might ask my extended family for money for a LLMD visit if next week's appointment is a disaster.
Thanks for caring. This whole situation is frustrating and dis-heartening. Though, I know that most of you have dealt with things for much much longer than I have. I just miss an active life and having energy. That was soooo nice and I took it soooo for granted.