What is your lyme story?

Hi PDX,

1. I remember a tick bite. I pulled three embedded ticks off myself over the years before I got sick. But I don't remember when the tick bites were in relation to the day I got sick. I did get a rash right away, but it was not a bulls eye rash. It was raised and large angry red. Spread over many areas of my body. I never in my life had a rash prior to this. I was led to believe from what I had heard that if it was not a bulls eye rash that you don't have lyme. So each tick I pulled I watched and waited for the bulls eye. Never got that one. So I figured, your good, no lyme. Not so. Prior to diagnosis I got a butterfly rash on my face. The lupus rash.

2. Yes I lived in a tick endemic area. Southeast Pennsylvania. I walked my dog everyday through the woods, in flip flops, blissfully ignorant of ticks and the dangers.

3. My symptoms were major. Every system in my body was affected all at once and then things got even worse. There were too many symptoms to list here, but they are the ones everyone here talks about. Except I am not sure if others had this....I had red eyes, like I was stoned. For months and months, I think maybe a year then an eye dr diagnosed the eyes as scleritis and gave me steroids which got rid of the red but probably made everything else worse.

4. It took me 8 years to get diagnosed. It only happened because I moved to another endemic area in Southeast Penna in which the drs here are on the lookout for lyme. As soon as I moved here and got a new primary, the dr was testing me for lyme.

5. I was originally tested with Elisa. It was negative. But my dr felt I still had lyme and we had many discussions on what to do. He agreed that I should see a lyme literate dr, but wanted to keep running tests on me to watch and possible diagnose anything else that was not looking kosher. For instance, my heart, and a lupus test came up positive. So in addition to lyme dr he wanted me to go to a rheumy to get treated for lupus. The rheumy felt it was lyme not lupus. My lyme dr did the igenex test which was not cdc positive but certain bands were either ind or +. I don't remember which bands they were. I would have to go digging to find my paperwork.

6. I credit avril levine for my lyme diagnosis. It never occurred to my that my years of illness was lyme. Then I saw a story about avril. I am like, her symptoms are my symptoms!! Then at the same time my primary was saying it could be lyme. All those years of being so desperately ill. I am not much of a person who follows or listens to celebrities but I think this girl speaking out saved my life. Then, my new dr too, the only dr who did not tell me I was a hypochondriac and who fought to find out what was going on with me. He told me he knew very little about lyme disease. A friend of his little girl was sick with lyme. They spent their whole savings trying to get her well. That is all my dr knew, was how difficult it is to treat. He never prescribed any drugs for lyme for me, but supports me. I see him every few months to check in and he said he will run any and all labs I wish to have done. And also, my husband took a job and we moved to this new area. Where we lived before, lyme was ridiculous but drs there did not believe it.

7. I believe I will get well. I have to. I keep telling myself, the stars lined up for me. My husband took a job to an area where the drs are on the lookout for it. I saw the story about avril levine and found a primary who believed every symptoms I was having. Funny to me....I am not a woo woo person, but around this time I kept seeing the number 111 everywhere. I mean everywhere. So strange. I took that as a good sign to keep going and have faith I will be well. Everytime I had a severe herx or heart issues I would suddenly see the number 111. For instance, I would take my blood sugar reading and there on my monitor would be 111. All the time!! It helped calm the panic I would have about the heart pain and skipping/fast beats.

So there is my story. I hope someone can learn from this thread and if they don't know what is wrong with them, may see their story here and get treatment.

mm57553 - you're in Austin? I am as well. Can you email me what LLMD you're seeing? I've been going to an LLND and am scheduled to meet with an LLMD on Thursday. Considering how limited our options are here, I'm curious if you're using the same doc and if you've had success with him?

PDXtransplant said...
Please answer these questions:

1. Do you remember a tick bite? If so, did you have a rash? Was it a bullsye rash or a different type of rash?

2. Do you live in a tick endemic area?

3. What were your first symptoms, either minor, major or both?

4. How long did it take you to get diagnosed?

5. Who did you test through, what tests did you do and what were your results?

Thanks!

Just trying to get a general understand of how people were diagnosed.
Thanks!

1) I grew up with having ticks pulled off of me - I don't remember far enough back to not know a time when tick checks weren't being done - but no one understood what the threat from those ticks really was back then. I've had many rashes, no bull's eyes though.

2)No. According to the most common resources quoted today, I have never lived in an endemic region and still don't - but that hasn't stopped me from getting every tick-borne infection out there practically (according to the LLMD I saw at the beginning of my treatments phase). I was first infected in Northern Idaho before the age of 7.

3)The first symptoms that I'm aware of is an incredibly high fever at the age of 7 (1970) - if I remember correctly what I was told, my fever was 105 and climbing - so I got LOTS of ice baths (that's the part I remember on my own!), as the hospital was over a 2 hour drive and the doctor didn't want me 'unattended to' during the drive with my fever so high. A short course of abx for "some type of infection" was given to me at that point.

4) I was diagnosed at the age of 44 - but by then, I had received a ton of tick bites and had managed to get a lot more infections. I was sick in bed a lot during that time - but no one ever found the answer as to why.

5) I was tested by my LLMD at the time, and the first tests kept coming back negative. It wasn't until I had a full 12 months of treatment that I was finally fully CDC positive for Lyme as well as RMSF - 37 years after being infected. I was clinically diagnosed with all tick borne infections though.

I was tested through LabCorp (I do NOT recommend using them!).

1. Do you remember a tick bite? If so, did you have a rash? Was it a bullsye rash or a different type of rash? I took a shower and saw the bite mark on my forearm. There was no tick. It was a bull's eye, but I did not know what that meant at the time. I had never been bitten by a tick before.

2. Do you live in a tick endemic area? No - Northern California has ticks, but I did not know that lyme was prevalent here.

3. What were your first symptoms, either minor, major or both? Sore neck (I thought I slept wrong), ears plugged, head pain that was horrific, unusual sore throat.

4. How long did it take you to get diagnosed?
Bit April 2015
1st symptom June 2015
started treatment (abx for 30 days) August 2015
Igenex test result September 2015
started herbs September 2015
No symptoms March 2016
Stopped all herbs June 2016 healed.

5. Who did you test through, what tests did you do and what were your results? GP gave me an Elisa lyme test through Quest July. It was negative. Ingenex was taken in August and results came in Sept - positive.

1. Do you remember a tick bite? If so, did you have a rash? Was it a bullsye rash or a different type of rash?

Didn't see a tick or tick bite on me. No rash.

2. Do you live in a tick endemic area?

Health Canada says it's endemic - I have only ever seen one tick (one year after diagnosis - on the top of my head)

3. What were your first symptoms, either minor, major or both?

major to start...and both major and minor. Close to 40 symptoms I have or have had.

4. How long did it take you to get diagnosed?

15 months - 3 or 4 MD's, 3 ND's, 2 Endocrinologists, 1 Neurologist, 1 neurosurgeon, 1 Physiatrist,

5. Who did you test through, what tests did you do and what were your results?

Igenex lyme WB IgM and IgG - Igenex positive. This was after government test - only the IFA done - negative result.

1. Do you remember a tick bite? If so, did you have a rash? Was it a bullsye rash or a different type of rash?
Yes, I pulled the tick off. Yes, I had an EM rash about 10 days after, around the wound. No it was different than bullseye rash: just a big purple mark that grew so fast, every day it was bigger. The local MD immediately diagnosed it the EM rash from Borrelia.

2. Do you live in a tick endemic area?
Yes, very old area with tick born infections, near the Black Forest.
35 % of ticks in Konstanz, my region, were said to have Bb species in 2005. It must be more now.
Where I live, FSME which is a viral infection similar to Powassan is 'red', meaning red zone, high danger.

3. What were your first symptoms, either minor, major or both?
EM rash: no other symptom.
Then started arthritis, fatigue, light sensitivity, nausea, night sweats, air hunger, heavy legs, tinnitus,chest pains, ribcage pains, heart symptoms etc etc etc.


4. How long did it take you to get diagnosed?
Immediately (EM rash = lyme).
But after 2 weeks doxy: told cured, no more treatment needed!!!

5. Who did you test through, what tests did you do and what were your results?

3 different Westernblots, all of them by different labs in Switzerland.

First Westernblot: positive for lyme (I barely had lyme symptoms then)

Second Westernblot: borderline (started having symptoms, still not handicapping though)

3rd WEsternblot: negative. That was the moment I was having MOST of my symptoms. Totally handicapping me.

Two known tick bites.
No bulls-eye.

Live in Western Massachusetts(Unbelievable infestation of ticks here). Travel to Central Texas as much as I can.

First symptom:Strange sensation(like a flushed feeling)throughout both legs(moderate) for around 4 months. Then a few months later a one time whole body vibration(Major and weird). Then months later all down hill and hospitalized with numerous neuro Lyme symptoms.

Took 15 months to 2 yrs to get diagnosed(GP, rheumatologist, neurologists,hospital ER's etc.)

Tested negative for over 2 years with Quest labs, Bay state Reference labs . Stopped testing.

Clinically diagnosed September 2016.

Then thankfully found this forum, Buhner and Dr C. and the sun began to shine again

1. Do you remember a tick bite? If so, did you have a rash? Was it a bullsye rash or a different type of rash?
Never saw a tick, no rash

2. Do you live in a tick endemic area?
No, but we were hiking in Lake Tahoe California

3. What were your first symptoms, either minor, major or both?
Paralysis of legs, meningitis, fever, photophobia, blurry vision, numbness in feet, numb cheek, loss of appetite.

4. How long did it take you to get diagnosed?
One month.

5. Who did you test through, what tests did you do and what were your results?
I was admitted to the hospital. They had no idea what was wrong. Gave me Doxycycline because they didn't know what else to do. Two days after starting doxy my fever was gone and I could take my sunglasses off for the first time in a month. The prescription they gave m in the hospital was only for two weeks. Three days after the prescription ended, fevers were back raging. A chiropractor saw me and ordered Igenex testing, the Western US regional panel. I tested positive through Quest Diagnostics for Bartonella and Borrelia Hermsii (relapsing tick fever). The lyme test through Quest was negative. Then through Igenex, I tested positive for Lyme, Bartonella, Babesia duncani, Rocky Mountain Spotted Fever, Relapsing Tick Fever, Erhlichia. Two of my three kids were also bit on our hiking trip. My youngest child is doing great after six months on antibiotics and he will be done in another two months. My middle daughter is 10 year old and she is incredibly sick. Practically non functioning. After six months of antibiotics, she just tested CDC positive again for Lyme IGM, active infection. And the pediatrician was shocked. IDIOT!!!!! My oldest daughter and my husband were not bit.

Thanks!

Just trying to get a general understand of how people were diagnosed.
Thanks!