Lyme Symptoms?! Muscle twitches, burning?

Hello all!

I was diagnosed with early Lyme from an Urgent Care center and I was given 21 days of Doxycycline. However, during that cycle, I skipped a couple of doses and didn't take them on time. I did however finish all of the pills. I have been off of it for two weeks.

Since then, I have been having muscle twitches ALL OVER MY BODY. And my arm and legs muscles are constantly BURNING. I'm also super fatigued and weak and my hands shake like crazy. I have had a low grade fever of 99.6 for the past week. I'm going insane! My GP wants to test for things like MS and Myasthenia Gravis just to rule out. But as I understand it, most doctors do not know how to treat this terrible disease.

Do you think my cycle killed those suckers? Or do you think my symptoms now because the Lyme is coming back with vengence? I'm really scared.

Has anyone dealt with this before? PLEASE HELP!

God bless!

<3

Hi bumblesunshine,

21 days is normally not long enough treatment. You are obviously not seeing a Lyme Literate doctor which is very important when you have this disease. You really need to find an LLMD ASAP so you can get the right treatment. Here is some information for you to read about dosaging, etc.

Dosage

 

Increasingly, clinicians recommend that certain drugs used for Lyme disease be given at higher daily doses: for example, 3,000–6,000 mg of amoxicillin, 300–400 mg doxycycline, and 500–600 mg of azithromycin. Some clinicians prescribe antibiotics using blood levels to guide higher doses. Close monitoring of complete blood counts and chemistries are also required with this approach.

 

With higher doses, there may be an increase in adverse events in general and gastrointestinal problems in particular. Acidophilus has reportedly reduced the incidence of Clostridium difficile colitis and non-C. difficile antibiotic-related diarrhea.

 

Serious adverse effects of antibiotics, however, were less common than previous estimates. In a recent clinical trial of chronic Lyme disease, the overall serious adverse event rate was 3% after three months of antibiotics, including 1 month of intravenous antibiotics. Clinicians who have experience with higher dose antibiotic therapy must balance the benefit of higher drug levels achieved with this therapy against the modest risk of gastrointestinal and other side effects.

Here is the link. Read this page because it gives a lot of helpful information.

http://www.ilads.org/lyme_disease/treatment_guidelines_clearing_ilads.html

Thank you guys for all of your help!

I tested positive. At the time I went to the doctor, I only had fatigue. I thought it was vitamin deficiency. I NEVER got better during treatment. In fact, I got worse. My legs felt like tree trunks and I was tired all the time. AFTER treatment, My body felt so tired and weak and now I have this burning sensation and muscle twitches everywhere. It's really scary.

My GP seems confident that my treatment killed the bacteria. And she refuses to give me anymore Doxycycline. I have attempted to make an appointment to see a LLMD, but the wait is so long. I don't know if I can live in this fear anymore. I have convinced myself that the lyme is gone because they said that they caught it early and that this is something much worse. :/ Maybe that's typical? Has anyone gone through this before?

I'm a college student and a full-time employee at a law firm. My life is so hectic that I can't have this disease anymore. I am tempted to fly anywhere I can get treatment on the East Coast. Any ideas?

Thank you!

The LLMD I see had a 6 week wait before I could see him the first time. I totally understand what you're going through, since I also went through everything you describe.

While I was waiting to get in to see the LLMD, I found a naturopath who specializes in lyme and co-infections. He was able to get me in a few days after I called. You may want to try contacting naturopathic doctors in your area and see if any of them treat lyme disease. It's something else you can do while you wait for your LLMD appointment.

In the meantime, hang in there!

Bumblebee. Wondering how you are doing. I also have been treated for early lyme. Only remaining symptom is lower leg twitching. Could this be from the doxy itself. Never had this before doxy!

This is actually a common happening, Catflannery. Many people get 30 days (or less) of treatment and still have symptoms - especially if it's an older infection - which means you still have the active infection.

You need to get in to see a good LLMD - one that understands these infections are hard to treat in many people.
​​
​​
​For information on finding a​n ILADS ​(International Lyme and Associated Diseases Society)​ trained​ Lyme Literate Medical Doctor(LLMD) in your area, you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference. ​​
​​
You ​​can send me an email by clicking on my screen name or the small blue envelope under my screen name. I may have contact information for some LLMD's in your area as well.​ ​Please include your state and area that you would like to find a LLMD in and I will see how close I can get to your location.​

​​
​​ You can start a new thread titled something like "Looking for LLMD in the ​​(insert the nearest larger city & state)​​ area". Members can email you about the LLMD's that they see in that area if you have your email enabled. We don't allow doctors names to be posted though.


​ Y​​ou can go to ​​The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link:
​​www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74​


Y​​ou can email ​​the Tick-Borne Disease Alliance at​: medicalinfo@tbdalliance.org​

​​
ILADS has their own referral system as well: ​​
​​http://ilads.org/ilads_media/physician-referral/


And www.LymeDoc.org

You will want to find an ILADS trained doctor, as ID Docs (Infectious Disease Doctors) as well as many others, believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your healing journey: www.ilads.org/lyme/treatment-guideline.php

Welcome Catflannery, just wanted to say hi and hope you get to feeling better soon!