HealingWell
Search Close Search
☰

Diagnosed with lyme disease twice

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 1/30/2016 8:01 AM (GMT 0)
I've tested positive for Lyme in two separate cases. One time with the rash once without. Both times were treated with anti-biotic fairly quickly. Two years after treatment I developed severe bicep tendonitis, I've been dealing with that for 4 years. Then I've developed plantar fasciitis and lower back pain. There is no sleep at night without taking Tramadol. Is it possible I still have the Lyme and need treated again? Feeling Hopeless
Posted 1/30/2016 1:05 PM (GMT 0)
Welcome Iowa 2 Timer!

Sorry for the reason you're here but, glad you found us.

Unfortunately, once we get a positive test result for Lyme, future test results are useless for diagnosis.

You see, Lyme and its coinfections have the unique ability of altering our immune response. Since the most common tests for Lyme measure antibody response, we're not able to rely on the result of subsequent tests because the antibody response has been altered by the bacteria.

Even the CDC says Lyme is a clinical diagnosis - based upon symptoms.

ILADS (International Lyme and Associated Diseases Society) recommends treating for 2 months past complete resolution of symptoms. Was that the case for you?

Were you only diagnosed with Lyme? And, were you only treated for Lyme?

If yes, that alone could explain things. Tick saliva is a salad bowl and most of us get more than one infection from a tick bite.

You might want to take a peek at the "New to Lyme? Start Here!" thread that sits at the top of the forum. There's lots of great information in there including symptoms lists, test interpretation instructions, detoxing suggestions and more.

And, if you want a proper evaluation of your situation, I suggest consulting with a LLMD - preferably one trained by ILADS. If you'd like to go that route, please start another thread titled "Looking for LLMD in (insert larger city near you)". Your email would need to be enabled via your profile for members to send you contact info since forum rules prevent posting that in the open forum.

ILADS does have a physician referral feature on their site:

ilads.org/ilads_media/physician-referral/

Best of luck to you moving forward!
Posted 1/30/2016 2:31 PM (GMT 0)
Hi Iowa! Welcome, but so sorry you are dealing with this.

question - what medications were you on? Just to rule out the possibility of side effects, the class of fluroquinolones (cipro and levaquin), can cause tendonitis.

Are you sure you do have plantar fascitis? I was diagnosed with that too after I treated lyme, but I did figure out I had it. But while I had lyme I had foot pain - they were two different types of pain, and plantar fascitis is often a misdiagnosis when you have lyme.

what happens when you don't take tramadol? do you wake up from dreams or night sweats? is it anxiety or are you just wide awake?

I guess you have to rule out all other possibilities of the causes of your symptoms, and once you do that, then you can consider lyme.

how long did you treat for the second time? Was the second time with or without the rash? If it was without the rash, could it have been a resurfacing of lyme?

sorry for all of the questions, but they will help you think things thru and possibly figure things out. This forum is great, so glad you found us, we are all here to help!!
Posted 1/30/2016 2:56 PM (GMT 0)
Hi Iowa 2 Timer!
Welcome to our community! I'm so glad you found us.

If you haven't ​yet​, it would be helpful for you to start with reading through the thread at the top of the forum titled,"New to Lyme?...Start here!!", as it is packed full of important information, symptom lists, helpful links and pdf's, how to detox when one has these infections, information on probiotics and much more. And this is another good list of possible detoxing routines: www.tiredoflyme.com/detox-methods.html

Since you said that you had been treated twice and still have symptoms, is it safe to assume that you didn't treat until after all symptoms had resolved? That's the standard measurement of how long to treat these infections when you see a doctor that has been properly educated. Otherwise a person is almost guaranteed that they haven't treated long enough and will relapse. You need to see a doctor that is properly trained to be treated properly - kind of like asking your GP to do brain surgery on you otherwise. smilewinkgrin


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 (or province) and area that you would like to find a LLMD in and I will be happy to share the names I have.​


You can email the Tick-Borne Disease Alliance at [email protected]​ for LLMD referrals and you can go to ​tbdalliance.org​​ to learn more about these infections.


You 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​​


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


​ You will want to find an ILADS trained doctor, not one that has self proclaimed themselves as a LLMD or an ID Doc (Infectious Disease Doctor), as ID docs 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
Posted 1/30/2016 9:21 PM (GMT 0)
Thanks to everyone for the information. The first time I the bullseye rash on my back. Was treated with antibiotics never had any problems after the meds(three weeks of horrible antibiotics that made me very sick) were done. The second time the tick was on my arm, within 2 weeks I developed bacterial pneumonia. doctor told me not to worry everyone thinks they have lyme disease. I was very sick for 2 more weeks with a very high fever (103), sever headaches. When my heart started racing and wouldn't stop, I was hauled to the emergency room. 2 weeks later I went back to the hospital, they said I was positive for lyme and they started treatment. Three more weeks of hell. After treatment I was fine for 2 years until all these things started happening. If I don't take tramadol at night I will sleep for maybe a half hour I wake up and roll around with what feels like aching arms and legs and shooting pain in my elbows. Hopefully I can find a LLMD in my area. I will make a post for that.
Posted 1/30/2016 9:26 PM (GMT 0)
Yes, start a new thread to look for a LLMD nearest you.

You will also need to enable your email option, so members can send you the names of LLMD's privately.


Sorry to hear you're having to treat for a third time.

You might want to consider taking herbs with your antibiotic treatment...if not then, at least after your treatment stops...for several months.

Also, you should be treating for and additional 4-8 weeks after symptoms resolve.
✚ New Topic ✚ Reply