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?

Yes, I'm putting my foot down this week to all these ridiculous hours I'm working. We have a new director and she really is something.....and it's not something good. She doesn't seem inclined to hire enough people to get the work done so I'm going to try to keep it under 45 hours from here on out. If I only had a money tree that grew in the back of my yard....

You can email Ilads.org and they should be able to send you a list of doctors in your state. That is how I found mine.

Hang in there with the doxy....as long as it isn't giving you crazy symptomatic neuropathy flairs. Don't be afraid to back off the antibiotic for a day or two, if it's causing you more pain. You could ask your doctor to switch the doxy out for something else; however, he might not do that since he is a conventional doctor. Treat yourself well, get some good nutrition in and get some ZZZzzzs. Do you have Raynaud's going on with your fingertips? I did when my symptoms first came on.


Wow, you too? I feel like we are in some small, special club...that we never wanted to be members of. Even on mainstream hyperacusis websites, they list Lyme as a cause. I've come across a few blogs with people complaining of this symptom and sometimes facial nerve pain (trigeminal/atypical).

So within the first 2 weeks of taking doxy (and LDN), my hands felt like they were swelling and burning less. It was subtle, but I type on a computer for a living so it was noticeable. After 3 months, the burning on the back of my head went away and visits me infrequently now. Between 3-6 months, my foot burning lessened to the point where I was wearing shoes again. Prior to this, I had to slip my shoes off during work since by feet burned so badly. Between 6 months and 1 year, improvements slowed. I can sort of, kind of lift weights sometimes. My body doesn't really twitch much anymore. My face burns less now. My hands are 100% resolved...free of pain entirely. I have a long way to go but I'm so grateful for what health that I've gotten back.

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.

I'm glad to hear that IV Rocephin worked for some of your symptoms. It seems that for the real serious cases, IV is the only thing that gets some people better. I will likely be paying for a lot of this IV stuff out of pocket. I'm trying to figure out what kind of financial cost I'm looking at. It seems that it can be anywhere from 750-1500/month or more. I guess it is what it is....as long as I can keep working during this whole ordeal. I'm the breadwinner of my household so if I go down, the whole ship might sink.

I think there will be some trying and dark times ahead of me with IV antibiotics. I'm lucky that I can work from home sometimes, else I would have never have been able to stay employed. Did your face pain and disequilibrium ever get better with treatment? I know that we both share some of the same facial symptoms, which is some of the worst pain that I have some days.

May I suggest, if you are doing IV abx for the first time, you should prepare for the possibility of a herx. They gave me pretty high doses of Rocephin and
I did herx and it was tolerable but, I was already off work and a family member came to stay with me so my husband could work so I was well taken care of. Since you are the breadwinner, and if your employer is not understanding, maybe take some vacation time.

If I had to do it all over again, I would do IV again in a minute. I was not "cured" but it brought the pain level down and helped a lot of symptoms, the worst being seizures,migraines, insomnia, narcolepsy and neck pain so bad, I couldn't sit upright. It also brought back some cognitive function I had lost and just made me feel, cognitively, a bit more like my old self.

The equilibrium got much better but sadly, pain in my face, which is actually the pain in the entire right side of my head, was better while on IV and for several months afterward but, it came back. I had to stop all abx because my c.diff issues were becoming very serious and my docs advised no more abx, ever. It is the main reason I have too stay on gabapentin or Lyrica. I stay on the lowest dose possible of Lyrica...it just takes the edge off. I also take opiates for the pain.

Also, if you are paying for it yourself, I knew folks who had no insurance and had to be resourceful. One woman went right to abx maker and got a discounted price but this was 15+ yrs ago. I just had to purchase some of my cancer meds from Canada because my insurance would not cover them and that is another option although I know the PICC line insertion and nursing costs are what rack things up. I also knew people who enlisted family members who were nurses to help manage the PICC line rather than pay an agency.

If you do the PICC line, hydrate like crazy the entire day before you have it in...it helps insertion. Prior to my PICC line, I had a midline and my nurse not only had me hydrate, she had me wrap a hot/wet large towel around my arm for 20 minutes prior to insertion...it REALLY helped. I have tiny, crappy veins. I was so scared before the first time because I am such a wimp about needles but they taught me how to do the Rocephin twice a day, flush with saline and heparin and it was easy. Seriously, if I can do it, anyone can do it.

Best of luck. Please let me know if you decide to do it. I'll be your cheerleader
Diandra

Yes, I was worried about that. I know my first dose will be given at my Lyme clinic so they can watch me. I will take some time off work. Prepare for the worst, hope for the best.

Gosh the face pain is the worst, isn't it? I wonder why some people get worse after antibiotics. We need more research.

I think I'll likely get 4-6 weeks of IV paid by insurance due to my second positive Lyme test after 1 year of orals. I have a friend who is a nurse who can help manage my PICC line (my insurance will only pay for a nurse if I'm bedridden). I guess I'll likely need 3-6 months of IV, so I'll definitely explore all options to keep the cost down.

Thanks for the tips and support!

So, my 3 weeks of doxy is just about to finish and i feel that there hasnt actually been any improvement in my symptoms after all.

Although there was initially some scabbing of the skin over some of the problem areas (my fingertips), these cleared up quite quickly without significance and now im worried now that perhaps my Lyme diagnoses was incorrect, and that the 2 positive test results i had were false positives.

I have another appointment with my doctor in 2 days time to discuss how the treatment went and im wondering what to do next. Should I push to continue the Doxycycline and see if i get any results from a longer trial, or should I ask to be retested, maybe with a broader test for other infections such as bartonella?

Could a positive test have actually indicated another type of infection other than Lyme disease?

Thanks