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Posted 6/4/2017 6:53 PM (GMT 0)
I was bit by a tick a little over 3 weeks ago. By day three of the bite the rash spread and was starting to bulls eye. Went to doc's and went on 2 weeks of doxy. After week one my hands started to tremor. Blood test at week 2 showed negative for Lyme. More symptoms coming daily, hands still tremor, muscle twitching in legs and shoulders, very sensitive to cold ( never was cold before but now I always am) sick feeling after I eat but do get much more hungry than usual, insomnia some nights, and a sense of off balanace when I stand.

Could this be Lyme disease and could the 1st blood test be wrong?

Going crazy here. Any advise would be great

Thanks!!
Posted 6/4/2017 7:18 PM (GMT 0)
Hi Mike,

The bullseye rash after a tick bite - is a symptom of Lyme disease.

Two weeks of doxy isn't enough...unfortunately. You need to treat until sign/symptom free PLUS an additional 4-8 weeks.

Yes, the 1st blood test is wrong. Your immune system hadn't yet formed the antibodies that are needed for a positive WB test.

Advice: Get to a LLMD for treatment a.s.a.p.
If you can get a regular Dr. to prescribe more doxy to last until your LLMD appt...that would be best.

The doxy dosage should be 200 mg twice daily.

We encourage new members to read through the thread at the top of the page titled: "New to Lyme?..Start Here!" It's packed full of useful information.

We can help you find a LLMD. Start a new thread titled: "Looking for LLMD in/near____" and fill in the blank.

You can also send me an email, I will check my list of LLMD's and send you any names I have for where you are searching.


When you do find one...and call for an appt...mention it was a recent bite...and maybe they can get you in for a quick appt...and give you some more abx.

You can also contact ILADS for a physician referral:

ilads.org/ilads_media/physician-referral/
Posted 6/4/2017 7:25 PM (GMT 0)
Hi Mike!

Urgency is top priority here.

You don't want it to go from acute to chronic.
Posted 6/4/2017 7:48 PM (GMT 0)
Hi Girlie

Not sure how to email you. I live in Allentown Pa zip code 18103
Posted 6/4/2017 7:50 PM (GMT 0)
Click on the envelope beneath my screen name on the left

Be sure to identify in the email where you are searching,
Posted 6/4/2017 7:58 PM (GMT 0)
I also want to add that I haven't got flu like symptoms or joint pain. But all that I posted above started 1 week after the bite
Posted 6/4/2017 8:45 PM (GMT 0)

Mike1977 said...
I also want to add that I haven't got flu like symptoms or joint pain. But all that I posted above started 1 week after the bite

There are many different symptoms - doesn't matter which ones you have.
Posted 6/4/2017 8:53 PM (GMT 0)
Hi Mike and welcome to our forum.

I'm glad you found us. You have received very good advice from our members.

While you search for an LLMD there are some other things you can do that are beneficial: start building up your immune system. It is key is fighting off Lyme and the other co infections.

Start detoxing , there is tons of information about this on the new to Lyme page.

Try to elevate stress the best you can.

This forum has knowledgeable, experienced and compassionate members. Feel free to ask questions and reach out for support when you need too.

Take care, Sincerely, Jo
Posted 6/4/2017 9:37 PM (GMT 0)
Thanks everyone. Sorry to keep asking and stating more symptoms, I just want to be armed when I call my GP tomorrow and hopefully get more doxy. Are my symptoms normal? Like I said I haven't the classic flu like symptoms or joint pain. I do feel fatigued and some muscle stiffness in my hamstring but boy the other symptoms like the hand tremors and muscle twitches are driving me nuts. Originally I thought it was the doxy but apparently not.
Posted 6/4/2017 9:47 PM (GMT 0)
Mike there are a few members that live in the PA area and if you enable your email, they can write to you. We don't put doctor's names on the forum.

To enable your email, go to My Profile, Edit Profile, Bull's eye the Show my email address and click Submit on the bottom of the page.

It is nice to get personal references from members.

sorry you have lyme..... sad
Posted 6/4/2017 9:55 PM (GMT 0)
I dont remember having flu symptoms and I didn't have joint pain, but more stiffness and flushed tender feeling in legs in the beginning.

Everyone is different and there are other co infections that can be causing different symptoms also.

My muscle twitching and pain in soles of feet, Achilles is from the co infection Bartonella.

Some of us have neurological Lyme(neuroborreliosis) which causes strange unpleasant symptoms.

Others have the arthritic kind of symptoms.

Most regular GP's aren't aware of all the symptoms that Lyme and Co. can cause. That is why it is best to seek out an Lyme Literate MD that can treat according to your symptoms.

I think there is a list of possible symptoms on the new to Lyme page.

You can also start a new post asking "Help needed ,How to explain my symptoms at my Doctor visit" etc.

Members will then reply with help.

Take care and I wish you the best of healing. It's normal to have questions and its ok to keep asking them.

Sincerely, Jo
Posted 6/4/2017 10:19 PM (GMT 0)
I just enabled my email- thanks
Posted 6/4/2017 11:01 PM (GMT 0)
Should the correct amount daily dosing of doxy be 100mg at 2x per day or 200mg capsules 2x per day
Posted 6/4/2017 11:17 PM (GMT 0)
I believe I have seen Girlie post that it should be 200mg twice a day. She is very helpful with questions about ABX.
Posted 6/4/2017 11:25 PM (GMT 0)

Mike1977 said...
Thanks everyone. Sorry to keep asking and stating more symptoms, I just want to be armed when I call my GP tomorrow and hopefully get more doxy. Are my symptoms normal? Like I said I haven't the classic flu like symptoms or joint pain. I do feel fatigued and some muscle stiffness in my hamstring but boy the other symptoms like the hand tremors and muscle twitches are driving me nuts. Originally I thought it was the doxy but apparently not.

I never had flu symptoms - to this day never have had the fatigue that many people with lyme have.
I did get joint pain, but it was about 5 or 6 months after my initial symptoms.

Hand tremors and twitches could be nervous system involvement.
Mine started with nerve issues.

There is a comprehensive symptom list in the "New to Lyme?..Start Herel!" thread - take a look through that.

And, yes it really should be 200 mg twice daily of doxy.
Posted 6/4/2017 11:26 PM (GMT 0)

Mike1977 said...
I just enabled my email- thanks

In addition to emailing me - if you want members recommendations - start a new thread. See my first post on what to write in it.
Posted 6/4/2017 11:31 PM (GMT 0)
Hi Girlie - hopefully my emails are coming to you
Posted 6/4/2017 11:32 PM (GMT 0)
I'm going to check my emails now.
Posted 6/5/2017 1:54 AM (GMT 0)
Totally possible, Mike. I know someone who got bulls eye (no flu symptoms), then developed twitching months later. They did not get treatment due to not having flu-like symptoms initially. A year later they were having trouble speaking. I would make sure you do everything possible that it does not progress.

I personally had flu-like illness, no bulls-eye, no major joint pain.

Post Edited (k07) : 6/4/2017 7:59:36 PM (GMT-6)

Posted 6/5/2017 4:23 PM (GMT 0)
Update:

Went to GP this morning and got more abx's and sent me for a host of bloodwork. Also set me up to see an infectious disease specialist one week form today. All in all, a good visit
Posted 6/5/2017 4:50 PM (GMT 0)
Good luck Mike. You're lucky to have caught it early. If it were me, I'd hedge my bets and schedule an appt with an ilads trained Lyme literate medical doctor asap after you're scheduled to see the infectious disease specialist. ID specialist may deny you sufficient treatment. They're notorious for that. Actually, knowing what I know now, I'd skip the id specialist and go straight to an llmd unless the wait is too long.
Posted 6/5/2017 4:55 PM (GMT 0)
I hope your infectious disease specialist is better than the three that I saw. None of them had a clue about lymes and the one at WVU didn't even know what a herxheimer reaction was and refused to consider it was a possibility. Kept saying I was allergic to the abx which I initially thought was possible as my body doesn't tolerate meds well. But after third abx, that I knew I wasn't allergic to since I had taken it multiple times in the past, caused same symptoms my pcp said herx. Told ids at WVU what he thought and she said too many cooks in the kitchen and don't believe what you read on the net even though I wasn't reading anything online at the time. She acted like herx were some Internet myth. I wish she could experience just one bad one then tell me it's not for real. Yeah a little animosity there sorry. I have since cut ties with that incompetent, well I am just done with her. Going to a llmd tomorrow and hoping for a better outcome. Go to your appointment but just in case keep looking for a llmd. If it works with infectious disease doc then you can always cancel llmd appointment. Good luck to you.
Posted 6/5/2017 4:59 PM (GMT 0)
Hi Mike, you don't want to see an ID doc for this, there is a massive discrepancy between IDSA (Infectious Disease) and ILADS views on these infections.

Please read this to help you understand why you need to be sure to see an ILADS trained doctor instead:
ILADS vs IDSA:
www.clinicaladvisor.com/controversy-continues-to-fuel-the-lyme-war/article/117160/

archinte.jamanetwork.com/article.aspx?articleid=226373

www.ncbi.nlm.nih.gov/pmc/articles/PMC2901226/​
Posted 6/5/2017 5:42 PM (GMT 0)
I didn't want to believe that the id docs were daft like everyone said. I was already seeing a semi-llnd and resented having to pay out of pocket for what insurance should cover.
l had to see for myself so I saw 2 different id specialists on blue shield and they both denied my positive test results and insisted on testing me for hiv, hep-c, syphilis, tb, and inferior Lyme and coinfection tests that are notorious for being <50% accurate. Negative results on all. They both suggested I see a shrink.

These guys may be useful for some infectious diseases but not Lyme and tick borne illnesses. They pretty much all spout the same line : "we don't believe in Chronic Lyme disease" and "your test results are a false positive".

Post Edited (BJD55) : 6/5/2017 11:46:37 AM (GMT-6)

Posted 6/5/2017 5:47 PM (GMT 0)
Mike - I emailed you - did you get it?
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