Lyme disease after twenty years?

A similar story has happened to many over time.

So now your trying to figure it all out.

If your not a thyroid expert by now, you need to be. Dont just assume Drs know all about OPTIMAL thyroid treatment - most do not, even though its their job.

I say this since so many thyroid symptoms are similar to bacterial infections from ticks.

Is your thyroid completely dead from the iodine? If so, and they put you on only T4 med (Levothyroxine generic or name brand Synthroid), thats not good. YOu might be aware of this already?

If you have FT3, FT4 and TSH results with the ranges (they can be different), I can offer an educated thyroid comment.

And yes, Lyme tests are not very accurate. The co-infection tests are less accurate from what I hear. Post the type of lyme tests you had for others comments. The free ones from regular Drs are very inaccurate.

Hi!

I was first diagnosed with Lyme 25 years ago. Back then my tests were "borderline" positive. I was in and out of hospitals for over a year before my diagnosis and treatment with three weeks of antibiotics. I have had the same symptoms you have on and off over the years. They flared badly last year and I insisted on testing. My local doctor and ID specialist misread my results and told me I had a 'false positive" and had no trace of ever having Lyme Thank God that I found a LLMD through this forum who helped me. I ended getting tested again and popped both iGenex and CDC positive. Even without the positive test results, my LLMD would have insisted on treating me based upon a clinical diagnosis. Get to a LLMD is my advice.

Thank you all so much for replying !! As for my thyroid my levels as of last week were TSH .042, free T4 was 1.77 and my free T3 wasn't checked. I asked why my reverse T3 and reverse T4 has never been checked and my Endo says that that's only checked when someone is in really bad shape and in the hospital. Well I feel like I am I. Bad shape lol. I am going to Johns Hopkins on March 12 to an Endo from there to get a second opinion on everything. I so wish I didn't have the radioactive Iodine treatment but I Thought they knew what they were doing. I wasn't even stabilized when I had it done as I hear one should be stabilized on meds before that treatment is done but when I ask my current Endo questions about it I get the run around. He acts like he cares but I don't know if the carri g is helping my health as I really don't think it is. I am not for sure if my thyroid is completely dead from the treatment because they did tell me sometimes after a year it will come back so these are all questions I am going to be asking this Endo Dr at Johns Hopkins. I have found there is also a LLmD at the same place that my Endo appointment is and this LLmD works thru Johns Hopkins. If there is anything you can tell me about the thyroid issue and questions I need to ask the doctor I will be glad to listen very carefully and take notes. As far as the lyme test I had done all I know is he said it was the western blot test. The last one I had was over a year ago a he said it came back negative. I know now I should have asked for a copy of the results. I am trying to learn as much as I can about the tests and what I should know that I don't know. I have researched it a lot but Always read different things that throws us in different directions and it drives me crazy. I have never talked to anyone that has Lyme disease and what exact tests need to be done and what to look for other then my symptoms so please I am all ears as I have only been see By my GP and tested by my GP. As far as where the test was done I really don't know but I am going to make an appointment for sure with the LLmD up at Johns Hopkins like as soon as he can get me in. Please if you feel I am jumping around tell me to stop!! Lol. A few of the other symptoms I had was slurred speech and I could tell I wasnt pronouncing my words right. I didn't trust my own mind. I couldn't even back out of the drive way without looking atleast 6 times each way because I just didn't trust my own judgement and I was on No drugs of anykind. I would go to work then go straight home and go te bed. This lasted about 6 months. I don't even drink alcohol except maybe once or twice a year and that's one or two beers at each time. I would and still get numbness on the bottom of my left foot and on my back by my shoulder blade on certain spots. Really weird. I am so sorry if I seem like a fruit cake but I am so overwhelmed that I am finally able to talk to people that have Lyme disease even if I have it or not. I know for certain I was bitten by a tick, had the Lyme rash, was given two weeks of antibiotic which I can't remember what it was then after that all the craziness started that I never thought once could be from that tick bite. I had no computer back then and could do no research. Oh how I wish I had a computer back then. And even now it's so many different sites that say different things. It's nothing like talking to people that have this disease and knows first hand the effects, the symptoms and the bull crap drs out here. Thank you all for listening to me ramble. Please don't think I am a loony toon lol. Thanks for your Replys!! Can one PM another member ? If anyone would like to PM me please do. Or even email me. I still am not for sure what we can and can't do on this site so if I have said something that is not allowed please let me know and if I did so I am sorry.

Hi Glasguy!! Welcome to our community!!!

It's very common to be a bit overwhelmed when you first find a place that you can openly talk about what's been going on with you to others that have been through it!! We all understand!!

I would NOT encourage you to see a LLMD at Johns Hopkins. They are almost certainly an Infectious Disease doctor and they don't believe in chronic Lyme (which you have most likely) at all. They believe that Lyme is hard to get and easy to treat- which is why you only got 2 weeks of abx the first time around. We would like to help you avoid that merry-go-round this time.

For information on finding a Lyme Literate Medical Doctor(LLMD) in your area, you can start a new thread titled something like:"Looking for LLMD/LLND in the _______ area." Although 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 send me an email by clicking on my screen name or the small blue envelop 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.​


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

You can also 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


​ You can also now email TBDA (Tick Borne Disease Alliance) at [email protected]​
​ and ask for LLMD referrals also.
​

You will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) 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 Lyme journey.www.ilads.org/lyme/ILADS_Guidelines.pdf


As for Endo's - I've had nothing but trouble with them. I have an hypoactive thyroid, and not a single one of the ones that I saw would do a thing about it - even though I had trouble swallowing because my thyroid was swollen. I had to seek out a doc that uses natural meds to help me. So you may want to venture outside of an Endo's office for some REAL help with your thyroid as well.

There is a site that has a ton of good information about thyroid and adrenal issues called Stop the thyroid madness (www.stopthethyroidmadness.com/) that I really like and have found it to be very helpful. It also has a group that you can join to gain access to what is known as "The Good Doctors List", which is how I found my doc to help me with thyroid issues. I would encourage you to check both of them out.

Back to your Lyme issues, you should still be able to contact your doctor and get the test results - unless they don't keep records that long - but it might be worth a try.

And if you haven't yet, please do read through our "New to Lyme? Start here!" thread that sits at the top of the forum as it's packed with helpful and important information like symptom lists (Lyme is rarely the only thing passed) and detoxing suggestions, and even probiotic information.

And know that you aren't alone!! We are here to help you find the information you need to heal!! And keep reading and asking questions!! Information is power with these infections!

Thanks for all the Info Traveler! I will definitely take your advice on the Dr and Hopkins as I do not want to see a doctor that thinks in that way or practices in that way. I know there are doctors out there that use Lyme patients to make tons of money I am sure but I know there are true good honest caring drs that truly are trying to help people that have the disease. It's so wild how regular Gp drs look at Lymes disease. They make me feel so so isolated and just don't even want to talk about the possibilities of having chronic Lymes disease So uncomfortable. I live in Salisbury, maryland. My sister is the one that told me about the doctors up at Hopkins but I will listen to people that have been there and done that. I am just sick of these doctors that think they don't have to do anything for the good money they make and we have to pay and suffer while they sit back take our money and their answer to everything is " its all In Your head" have a good day lol. On the thyroid I know something isn't right, I was diagnosed with Graves' disease then given the radio active iodine. Then went to hypo and started the levro.. And that has put me back in over active thyroid. So I have been trying to get the "right dose that will put me in the "right range" and it's been a roller coaster ride. I swear it all started after the tick bite and rash and has plegued me for the last 20 years. I took a Lyme questionnaire I think from a LLMD on the Internet and the end it said if you score over 46 there is a good chance you have had a Tick borne infection and my score was 126 and I was trying my best to answer everything in the lowest scale possible. 2+2=4!! But I have not been clinically diagnosed but 20 years ago I was diagnosed In The ER but I have no proof of it other then my word memory and friends that what he'd the rash grow. I just nws to finally see a true LLMD. What sucks is that most don't accept insurances which I totally Understand when insurance companies don't want to pay for treatments but hopefully that's gong to change and it couldn't change soon enough.