Hey,

So, my doctor has prescribed me 3 weeks of Doxycycline at 100mg a day for suspected Lyme after having 2x positive IgM tests.

My symptoms before starting the treatment were allodynia, burning skin and paresthesia but on the 2nd night after taking Doxy i woke up with my left hand totally numb, which is worrying as this is totally new for me.

I trust my doctor but he is not an LLMD and so im looking for anyone who has any further info/ experience with this. My gut instinct is to stick with the full course of antibiotics, as ive read this is probably just the Herxheimer reaction occurring but im just concerned to go into this blindly as i have read from other people who had this reaction from Doxy and then they never fully recover...

Thanks

How long did the numbness last?

Doxy has anti-inflammatory properties, and is sometimes (or was in the recent past) used for carpal tunnel issues.

You can test yourself for Tinel's sign by tapping the underside of the wrist with a blunt object (wooden spoon or butter knife flat side) If you get tingling there going into the fingers you might have carpal tunnel. You can google Tinel's sign on YouTube to see illustrations of various joints where it occurs because of compressive issues.

Taking Doxy every day though orally may cause Candida, as the therapy time continues, and this will cause some nerve problems in some people as a side effect. Usually it would be bilateral though not just one place. One wrist suggests a local process or overuse or bending the wrist while sleeping.

Certain antibiotics can flair our neuro issues. I recently started taking Minocycline and it made me feel like I was dying (extreme burning, pain, fatigue, etc.) I promptly stopped taking it, called my LLMD and we are now changing my prescription.

I'm glad your doctor is giving you a trial of antibiotics. From what I remember of your story, your labs are suspicious for Lyme.

If you have interest, Dr. Horowitz has a book called Why Can't I Get Better. There is a chapter called "Pain". It talks about a patient with significant neruo symptoms and how certain treatments made her symptoms flair. It details the measures that were taken to troubleshoot the patient's neuro Lyme issues. I have re-read portions of this book countless times and it's been helpful in my health journey.

yes, thank you madisongrrl, it was actually after your reply that i started to take the idea of Lyme more seriously. My doctor had earlier suggested it was unrelated so i had brushed it off but after seeing your response i decided it was worth taking more seriously and hopefully something comes of it

I havent experienced any further numbness in my hand since that 2nd night now so thats good, its certainly eased my initial panic. Though i have felt a mild worsening of all my symptoms since i started the treatment - im hoping thats a good thing though...

I did try to test myself for the Tinel's sign but didnt get any tingling there so hopefully that means there no carpel tunnel. Thanks for the suggestion though, mrs D.

madisongrrl, how are you feeling these days? did you continue to make progress with the Lyme treatment?

Your doctor is undereducated about Lyme/co-infections causing neuropathy, which is unfortunate and typical. Even conservative medical institutions list neuropathy as a symptom caused by Lyme.

Types of Peripheral Neuropathy - Inflammatory - Lyme Disease

There are basically 3 different hypothesises as to the mechanism by which this happens: 1. direct assault of spirochetes on the nerve, 2. immune-mediated damage to the nerve by the host's own immune system, and 3. antibodies that impact small vessels feed the peripheral nerve. My guess is that damage happens from the combination of the above.

There might be a worsening of symptoms, but you should eventually get some small improvements (or at least I did). If Lyme/co-infections are indeed the cause your symptoms, a few weeks of doxy probably won't be the cure. You will have to find a doctor who is a LLMD or some clinician that is Lyme educated. I'm happy that your regular doctor at least is giving you something.

I've been meaning to post another update, but my job has been working me to death this summer to the tune of 60-70 hours per week. One year ago I could barely work 40 hours a week and I was pretty sure I was going to stop working entirely. What a difference a year can make.

I've done 1 year of oral antibiotics and I've seen many improvements. However, my improvements have recently plateaued. I took another Lyme test (iSpot) one year later and it is still positive. I still have paresthesias all over my body (less than 1 year ago), I still have some burning skin (it's much less now), I still have heat intolerance (it's better than it used to be), I still have facial and throat pain, and I still have disequilibrium. My hyperacusis and ear ringing have not come back, which I'm so grateful for. I still have bouts of fatigue, but I'm stronger than I was last year.

I've made a difficult and expensive decision to get a PICC line and try IV antibiotics. There are many risks and no guarantees by taking this route of action, but this is the only approach that got some Lyme patients well. I'm only 40 and I have a lot of life ahead of me, so I feel that I have to give this a shot.

wow, thats great to hear youve made such an improvements, even if its not complete yet being able to go from barely working 40 hours to almost double is excellent! Youve come a long way Please do take care not to over work yourself though, its easy to do!

I can totally understand your decision to push to get back to 100% though by using the PICC and IV, its a brave move but im sure youve calculated the risks and it is somthing that i think i would consider myself if i were in your position

Quote:

There might be a worsening of symptoms, but you should eventually get some small improvements (or at least I did). If Lyme/co-infections are indeed the cause your symptoms, a few weeks of doxy probably won't be the cure. You will have to find a doctor who is a LLMD or some clinician that is Lyme educated. I'm happy that your regular doctor at least is giving you something.

yeah, this is what i am reading from all the material, that i need to get a proper LLMD. Im going to see how it goes with this round of doxy and go from there.

Unfortunately my symptoms have continued to be worsen to some extent, today that my whole left leg was feeling very strange, kind of a mixture between cold and tingly! quite weird. I have noticed something interesting though, in that my fingertips, specifically on the areas where i have allodynia on them have dried out, so something definitely seems to be happening on the right areas at least!

Also, you mentioned hypercausis and thats something i didnt know could be a symptom, that was actually one of the first symptoms i had several years ago, but i would never have considered linking these things together. very interesting!

did you have any sort of time frame between when you started treatment to when you started to feel better?

A PICC line and IV Rocephin were the only abx that knocked out my seizures and gave me most of my memory back. I was so ill before this and no oral abx or combo was keeping my symptoms down. After, I believe, 6 weeks of this, I was substantially better. This was decades ago and sadly, not many docs will script this nor insurance pay for. These tic born illnesses are being swept under the rug and people are suffering terribly and going to hosts of doctors to treat various symptoms yet never getting better. Neuropathy is one of the primary symptoms I hear about and always tell people to get a test for all the tick born illnesses.

I wish you well with the IV and line. ...don't worry about the risks....I know tons of people who used them with no problem. Glad you are able to work...that is terrific.
D.

Can you post the results of your western blot? Which bands were positive?


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Also false positives are considered rare. I had to do a bit of searching, but this best sums up why this is the case and gives a bit of the backstory as to the origin of he controversy- LymeMD: Understanding the Western Blot


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LymeMD: Labcorp and the Lyme Western Blot. I recommend going on Dr Jaller's blog and typing in "false positive". You will get a series of of posts about this topic. While he is a LLMD, he is conservative, open to changing his opinion, knows what the Lyme literature says and doesn't say, is an allopathic physician by training, and doesn't utilize integrative medicine. His insight is very valuable.


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