Hello - New to Lyme and New to Forums

Hello, I started reading the forums since it was first put into my mind that I could have Lyme. I'll try to summarize my story but this might be long...

last 2 years I have been feeling increasingly "off", not sick, just various subtle pains and other odd things that didn't seem to make any sense. 40 years old and always been fairly active until just recently. 2 yrs ago I started to develop severe lower back pain, as well as numbness and tingling in my arms and hands. Was also getting frequent severe headaches with light/sound sensitivity, which no medication would help. I thought it was because of mostly desk work all day and got a more ergonomic set-up, which actually made things a lot worse. Meanwhile, I was having odd sensations in legs, such as burning, shooting sensations in back of thighs, tailbone and outside of knees, random burning/stabbing sensations in arches off and on. I bought a new bed (mine was 7+ yrs old) thinking it would help. All of the above, plus some other things progressed and i was starting to think it was my job making me sick.

In April 2016 I had a sudden change in bowel...blood in stool, severe cramping and abdominal/pelvic pain, diarrhea, urgency, etc., making me late for work. I was starting to have issues with focusing and reading comprehension (which is vital for my job). Headaches were more frequent. I felt like my performance was tanking so I talked to mgr and negotiated 8 weeks of unpaid leave to try to address the issues. Over the 8 weeks, I saw OBGYN, PCP, Gastro, had CT, colonoscopy, ultrasounds, bloodwork, etc. All normal. about 4 weeks in, I had sudden right achilles pain that made it painful to walk, some days worse than others and with no associated trauma or activity. deep back pain now with deep hip pain as well, insomnia as it mostly affected me at night. Would wake up at 3 am every night with back and hip pain, numb hands and arms. All of this pain prompted me to see ortho. He did an exam and ordered a bunch of bloodwork, asked about autoimmune history. He never mentioned Lyme, but his requested labs were CRP, RF, Lyme AB, Western Blot IGG IGM. I had not considered Lyme at all even though I live in a tick infested area and have been bitten many, many times. Both parents had it, with rash. I never had a rash, and always thought I pulled ticks off in time.

In July 2016 I got a voice mail from ortho office saying "You tested positive for Lyme and positive for IGG. Please see Dr. XXXX, an infectious disease doc at xxxx". I was dumbfounded, first because I had no idea what she was talking about, second because it was an a-ha moment.

I started to think about the timeline, and remembered finding two TINY ticks on my leg in March/April 2013. Memorable because of how small they were. Thought little of it, and never saw rash. In late July 2013, first day of a staycation, suddenly developed a mild fever, typical flu-like but no respiratory issues or vomiting/diarrhea...just low grade fever, chills, aches. Significantly with this flu, I had severe shin splints, which I never experienced before with a flu/fever. Also, I NEVER get sick, haven't had a cold in years, so I thought it must be exhaustion. Next day i was much better. A month later, another flu...same exact thing. Here today, gone tomorrow, but the shin pain was incredible with this one too.

Now, a few years later and all of these different physical/neurological things have been progressing. I unknowingly saw the ID doc, who seemed to agree with my timeline and believed I had Lyme (no Dx) and ordered more bloodwork for Lyme and Coinfections. He put me on 100mg Doxy 2x/day for 30 days and I felt fairly good about the appt. Meds made little impact except for no severe headache since. At follow up, things turned. He didn't explain any test results, though told me I was positive for Tularemia. He was not saying "no lyme" but he started telling me my symptoms don't really correlate with Lyme, and I should see a neurologist. I was kind of in a stupor leaving the office. i finally saw the labs and these are results:

LYME AB ... 0.96

Index Interpretation
----- --------------
< or = 0.90 Negative
0.91-1.09 Equivocal
> or = 1.10 Positive

18 KD (IGG) BAND NON-REACTIVE
58 KD (IGG) BAND NON-REACTIVE
45 KD (IGG) BAND NON-REACTIVE
41 KD (IGG) BAND NON-REACTIVE
93 KD (IGG) BAND NON-REACTIVE
39 KD (IGG) BAND NON-REACTIVE
23 KD (IGM) BAND NON-REACTIVE
30 KD (IGG) BAND NON-REACTIVE
23 KD (IGG) BAND NON-REACTIVE
41 KD (IGM) BAND REACTIVE
28 KD (IGG) BAND NON-REACTIVE
66 KD (IGG) BAND NON-REACTIVE
39 KD (IGM) BAND NON-REACTIVE

BRUCELLA IGM 0.03
BRUCELLA IGG 0.34

All of the other tests reported "Negative" except for the Tularemia. This was through Quest, and it's confusing. Why would the first Lab report "Lyme Positive/IGG Positive" yet a month later Quest shows the above?

Over the last month new things have popped up, 24/7 high-frequency tinnitus, achilles has now progressed to ankle and ball of foot stabbing pain, occasional left side also, shin pain, severe coughing fits for no reason and last 30 min or so, evening low grade fevers (99.1-99.5), mild head pain, waves of fatigue, itching, crawling sensations, wrist and finger pain in knuckles...i could go on and on.

Thanks to this forum, and all of the things I've learned in the short time...I have decided to get a 2nd opinion with a LLMD in Howell, NJ that has been mentioned a few times on this forum.

Sorry for the long read, but I'd like to learn if anyone has had similar progression that has been confirmed to have Lyme.

Thanks for reading.

Welcome! Sorry you are going through this but you found the right place for advice and support!

njfillet....because the testing is unreliable....but yes positively you have lyme. Also there is not such thing as "I thought I pulled the ticks in time...." . I got lyme form tick on me less than 5 min....yeah. There is not on time. From the moment that dam pest sucks the blood on you they are shedding all sort of alive infested with spirochetes and who knows what.

hmmm....find a LLMD as suggested above. Please.
Tuleremia is nasty...wow....called also rabbit disease. I should not have read what it is.

Welcome to the community! It is up to you, testing, but from all I have read lyme is a CLINICAL diagnosis which goes off of symptoms and exposure. Your symptoms, in my non-doctor view, well, they sure do shout out lyme and co-infections. I'd highly recommend this online quiz. http://www.tiredoflyme.com/horowitz-lyme-msids-questionnaire.html It convinced me that I had a tick borne illness.

Question - did you "herx" with the anti-biotics?

Here is a good link by IGEN-x - the lab that specializes in Lyme stuff - explains testing.

http://www.igenex.com/lyme_disease.htm

Hi njfillet - welcome to our community!

I'm so sorry for all you've been through...but glad you now have a diagnosis...and an upcoming appt. with a LLMD.

I would not do the spinal tap. You already have a diagnosis. The spinal tap is not a reliable test for diagnosing lyme disease.


We encourage all new members to take a look through the thread "New to Lyme?..Start Here!" It's packed full of useful information.

I also suggest that you start on a detoxing regimen...if you haven't already done so. When the infection bacteria dies-off, the endotoxins flood our body...causing an increase in severity of our current symptoms, in addition to some new symptoms. This is called a herxheimer reaction.

Regular detoxing will help with this.

Take a look at this:

www.tiredoflyme.com/the-herxheimer-reaction.html


You will want to employ multiple methods of detoxing to help with the herxheimer...and you should start a.s.a.p.
Start with a couple of methods...and every few days add in another one:

Here's a list of good detox ideas:

www.tiredoflyme.com/detox-methods.html

multifacetedme said...
Welcome to the community! It is up to you, testing, but from all I have read lyme is a CLINICAL diagnosis which goes off of symptoms and exposure. Your symptoms, in my non-doctor view, well, they sure do shout out lyme and co-infections. I'd highly recommend this online quiz. http://www.tiredoflyme.com/horowitz-lyme-msids-questionnaire.html It convinced me that I had a tick borne illness.

Question - did you "herx" with the anti-biotics?

Here is a good link by IGEN-x - the lab that specializes in Lyme stuff - explains testing.

http://www.igenex.com/lyme_disease.htm

Thanks for the welcome and for the info, I don't believe I "herxed". Nothing really changed except for the severity of the headaches I was having decreased immediately. I will definitely take that quiz. It's so hard to determine when I actually could have gotten any infections, as I have a long history of tick bites, tick exposure, etc. For the last 2.5 years though my exposure has increased tremendously...I've been living basically in the "woods", as my property is adjacent to a large WMA or "hunting zone" in NJ. At first I was freaked out by the amount of ticks I pulled off my dog on every outing, but over time you just get used to it. I was saving them in bags and bottles just in case, and analyzing them with a magnifying glass. Crazy, but I just stopped being afraid of them. I've found them in my bed, engorged...in the sofa, engorged...

k07 said...
What other coinfections where you tested for?

We have a lot of overlapping symptoms. I also test positive for Brucella (not Tularemia) and RMSF (rocky mountain spotted fever). My initial western blot for Lyme through IGeneX was indeterminiate and a recent one through Labcorp showed not even 1 band! But I am through the roof positive on the C6 Elisa test (for Lyme). Testing is pretty unreliable.

He tested for Malaria, West Nile, RMSF, Erlichia, Babesia. As I read more about Bartonella I'm surprised he didn't include that. It seems like I'm having some of those symptoms. I hope the LLMD will test for that next week.

njfillet (u sure sound like you have been filleted! Lots of folks here with your symptoms).

Sadly, as you have probably read, testing is not good, especially the standard labs. IMO, I wouldn't even bother with addtional Bart testing. And typical ID/neuros "fogettaboutit"- absolutely have them run testing (MINUS the unnecssary spinal tap!), but be aware most ID are not up to date with LD & co. And as mentioned, you will find some disease testing cross reactive (taxoplasmosis is one example).