LLMD Visit – New Meds 

7 Jun

My latest visit to the LLMD. Brain pressure has been something I’ve been suffering from for many years with cluster headaches and frequent migraines. Also aseptic meningitis from IVIG infusions. This was just a routine follow up appointment for the stupid pain meds law. But while there we addressed some of my current medical issues. 

My blood pressure has been high again lately and my heart acting up. The doctor said she could prescribe a medication for my hypertension which would mostly be for the cranial pressure called Losartan. So far it seems to be helping a little and my brain isn’t hurting as much. The cranial pressure makes it hard to think, react, and causes one to feel absolutely horrible each day. It’s a constant non-stop pressure that’s been there for at least 6-7 years. I hope this medication will continue to help give me at least one of my hundreds of symptoms some relief. 

I will be starting LDI injections soon. I had to check my vitamin D levels and I will be increasing the Vitamin D level to I believe she says a “90” or else you can’t do the injections. I’ve had a history of low D in past and have been on 50,000IU daily to get it back up. With Lupus I cannot be in the sun and get natural Vitamin D and I have a genetic problem with converting Vitamin D so it’s hard to get D. 

My blood has been thick again and I’ve been clotting during infusions. Blood thinners work too good for me such as RX or baby aspirin so we are going to try Nattokinase. This is a supplement blood thinner which should keep the blood flowing. At my recent blood test the phlebotomist said it took a long time to get the blood and it was sluggish. When I take baby aspirin I bleed from my ears and when my nurse stick me with the IV needle I bleed out all over the place. So this should be just the right amount. 

Minocycline and Tinidazole are the only two meds that help keep my Lyme from having a party so I’ve been on them as a maintenance dose. But I have been herxing a lot and having a build up of too many toxins that I can’t detox fast enough so we are cutting back on the dose. With Dr. Harris I think he had me on such a high dose of Minocycline even my primary’s and other LLMDs say “that could have killed you”! I had to go to the ER on only 3/4 of the dose he wanted me on. So be careful with Minocycline it’s rough on the brain or Lyme in the brain. 

I have an IVIG infusion this week so I need to rest up. I wish you all a much better week! Stay strong guys/gals 

Tonight’s smoothie  

4 Responses to “LLMD Visit – New Meds ”

  1. Zilla of the Resistance June 8, 2015 at 4:34 am #

    You are in my thoughts and prayers, Bryan. I hope you will find relief from the pressure in your brain; I bet it will help a lot of your symptoms if you can get that under better control.
    I’m glad that you were able to make the trip to your LLMD, I know it is a difficult journey for you. I just had my LLMD visit a few days ago, for the same reason: the stupid pain medicine law in my own stupid state (NY). My exactly 30 day supply of pain meds was depleted days before I could afford to make the 100 mile round trip to the Dr (33 days after my last pain script was filled) – I had saved my last pain pill for the day of the appointment so I could get through the trip – and it was a misery beyond words getting through those few days without the one med that helps me get out of bed and be a slightly productive human being who is not groaning in agony for a few hours a day. I asked if it would be possible to get just a few extra pain pills for the month so I would not have to suffer so before my next appointment but due to the stupid law it looked like it would be too much of a hassle to get a script for 100 pain pills for 30 days instead of 90 and the state computer program looked like it might mark me for life negatively if I got just a couple of extra pain pills for the month so I told them to not bother. So much for quality of life concerns, there is no room for compassion in states that have enacted Prohibitionist style laws against sick people who have a legitimate medical need for pain medication so that lawmakers can pat themselves on the back because they think denying chronic pain patients legal medications for their chronic pain will somehow keep heroin junkies from shooting up. Sorry for the rant, but you’re the only person besides myself who I’ve seen openly criticize the cruel and idiotic new laws against people who suffer from chronic pain due to illness.
    I hope the changes to your meds will have you feeling better soon. Keep fighting, and may God bless you!

    • 49er Bryan June 11, 2015 at 10:04 pm #

      Thank you. I’m sorry you also have to suffer to get a refill.this law is ridiculous. I see pill abusers with huge bottles of pills and those of us who cannot leave the house or get car sick have to suffer just fir a refill. Without pain meds the pain is so severe suicide is an option on our minds. They have no idea what we go through. And then to urine test us for a refill as if they don’t trust us? There needs to be something better to weed out the bad. I can think of a bunch of better ideas. Hopefully things change soon. Good luck with everything .

  2. Greg Hawkins June 8, 2015 at 2:23 pm #

    Thanks, Bryan.

    I appreciate your perspective and add you to my petitions.

    Peace, Greg Hawkins, SJ, Pharm.D., Fellow “Lymie.” @gehawkins P.S. I am having nominal-positive effects w/ 4 micron Colloid of Silver/+Ag/4oz./day. I have read of your use of the same. Keeps candida and encephalopathy down… Pax, -GH

    Sent from my iPad

  3. Carla Rose June 12, 2015 at 3:09 pm #

    Gluten free is the way to go. I’ve been GF for 10 years, long before I knew I had Lyme and I’m so glad I had the foresight to eliminate it from my diet. It may be beneficial for you.

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