Lyme: LLMD + Update

So on the 25th of September  (having stopped the antibiotics on 18/09/16) the pain came back. I could feel the brain fog taking over for roughly a day, my toes curling from the tightness of pain that morning, where my big toe sort of felt (possibly looked!) like this:



What do you make out of this? Nothing. Absolutely nothing. I am growing more desperate. More so because my dad has Lyme too.. And I finally convinced him to take his meds. Apparently monocycline isn’t available where he is… Leaving him with doxy… which i know he won’t stomach. He started on the tinidezole and half his face went still… Bell’s Palsy. His tremor is still there. So after two days of taking it he stopped the tini. The doctors, all of which don’t believe he has lyme, say it’s his nerves. DUH! But it isn’t for the reasons they think. I am so scared he will not continue and keep on deteriorating as a result. He still doubts my assessment and i don’t blame him. I would have under differing circumstances (as in if I never got lyme to begin with!). I know this sounds hypocritical. But I would rather be a hypocrite than a liar, which some may argue is one and the same. The point is, now I know better.

That said, I decided to look for a Lyme Literate Medical Doctor (LLMD) here in the UK. I had gone to the ILADS website  to fill a form to request for recommendations. Within a couple of days I got several ones. I picked the closest and checked their medical facilities. They mainly deal with autoimmune and allergy cases. But two of their doctors are Lyme Literate. I checked their credentials and am a bit hesitant about their medical backgrounds and credentials. I contacted them anyway and received an email with all the instructions (yes there was a full package detailing HOW you should come to the clinic) about the first visit and future visits. They had a solid plan and were pretty straight forwards. The cost was £200+ pounds  for the initial consultation which will last for 1.5 hours. This is not inclusive of the tests which could go as high as 1500£. Luckily for me, I’ve already had tests done by ArminLabs, in early June. You can read about my lyme history in this post: Sour Symptoms. Reading through their instructions, the require some interesting things from new patients… to respect their “no scent policy.” Yes, no scented anything. Not even your detergent… I am ok with that. HOWEVER, like you know from another post, I am broke as vase. My phone service is about to cut me off, and my uni is stalling on paying me for work I’ve completed in August…. but this rant is for another post. Anyway, so I am sitting here frugally using my Oyster card (which LT topped for me!) until my “next payment.” Which seems like it’s never coming through… Like wise for my scholarship. It’s so frustrating… Sometimes I really feel like giving up… but sometimes I brush that off and keep going despite the lack of an end goal. I convinced myself I just don’t see it yet.

So with this crazy A.D.D. tangent all over, I started Doxycycline (400mg at night) and Tinidizole (500mg morning) for the next infinite amount of time on the 25th of September. I feel better. That’s all I can say. On the 27th of September, I managed to run! 15 minutes, broken down to 5, 4.5, and 2.5 minutes of running with a 3 minute cumulative rest time. I covered what equals a mile every 5 minutes. Not bad for someone who couldn’t walk down the block without feeling like death.

As always will keep updating!




Leave a Reply

Fill in your details below or click an icon to log in: Logo

You are commenting using your account. Log Out /  Change )

Google+ photo

You are commenting using your Google+ account. Log Out /  Change )

Twitter picture

You are commenting using your Twitter account. Log Out /  Change )

Facebook photo

You are commenting using your Facebook account. Log Out /  Change )


Connecting to %s