Quick Update 

1 Jun

Since Sunmer is nearly here the weather has been 80-90’s here on the East Coast which seems like nothing coming from California where we get 115 degrees for weeks but the humidity is bad here. So it’s a swampy, sticky, sweaty heat versus the dry Cali heat. Plus there is no Delta Breeze. 

I have been overheating as usual. My body doesn’t regulate temperature very well so I always overheat during weather above 60 degrees. I can sweat in the snow. I constantly sweat and soak my clothes, couch, my bed…etc. I will take a cold shower and step out sweating. One doctor said I had a genetic disorder where I can’t retain fluids, I dehydrate easy and I overheat. My body core temp is average 94-95 so it’s weird I overheat. 

I have been drinking a lot of water, electrolytes and I don’t leave the house. The sun is my enemy. The sun makes me feel sicker, more fatigued, nauseous and I pass out sleeping in sun light. My skin burns easy. Lupus and the sun don’t mix. I don’t have air conditioning here and can’t afford to run a fan all day. But I’m hoping to get enough energy to pack and move back to California with my parents if the landlord will let me break my lease. 

I’ve been feeling sicker and my current Lyme antibiotics aren’t doing anything. I feel no relief from anything. I’ve tried diets, herbal protocols, injections, Picc line, IV antibiotics, oral antibiotics, homeopathic, LDI, supplements….blah blah. Trying to stay positive but going on 33 years with Lyme and co’s. I hope one day to find something successful that will give me even a little bit of relief. But even if the Lyme starts to progress my body and other illnesses are all beyond repair or incurable so I have that to deal with. 

My heart is still broken and I miss her even though she’s being very difficult. I thought we were getting married and living together but I guess she had other plans or is lost. I’m still alone with no human contact and taking care of myself. But hope to be back with my patents by August. They just moved to a new city so I will be starting over. 

Wish I had better news for you all. It’s too hot so I can barely think. I will try to update soon when I see my first east coast LLMD for the first time June 22nd. We will see what she puts me on. 

Keep up the fight everyone!! I know many who caught Lyme early who are back to a normal life. The key is catching it early. But for those like me who caught it way too late, we won’t give up! 


9 Responses to “Quick Update ”

  1. ro June 1, 2016 at 6:48 pm #

    Have you tried GcMaf? Lots of people with chronic lyme are getting good results with Mafactive check out the face book groups on GcMaf & lyme as it rebuilds your immune system to help fight the infection

    • 49er Bryan June 1, 2016 at 11:05 pm #

      I asked my doctor about it and she said I wouldn’t be ideal for it.ive been on IVIG which is supposed to help boost my immune but hasn’t done much. I take argentyn 23 also.

  2. Jaime June 1, 2016 at 8:17 pm #

    Keep fighting Brian!!! Sounds like moving back to California with your parents is the best idea….you need the support!! I will pray for you to have peace and some relief. Take care.

    • 49er Bryan June 1, 2016 at 11:05 pm #

      Thank you. Hope things are going better for you

  3. kerripepper June 8, 2016 at 5:56 pm #

    Praying for you! I understand what you are going through with the lyme. I have been living with it for 5 years. I’m in East Texas and 2 other ladies at our church have Lyme also. My sister and her best friend have it and I know of 4 other cases. But CDC and IDSA say its not in Texas! They are such a joke! But I will be praying for you!

  4. RM June 10, 2016 at 2:11 pm #

    I am so sorry you are going through this. I have late stage lyme and erlichosis, bartonella, etc, and one of my children. The oldest finally is lyme negative after lots of treatment. Praying you find something that helps.Have you considered cannabis? Helped my POTS and encephalopathy, and I took it for over a year. Gave me my brain back and I was able to socialize, was pain free much more often.

    • 49er Bryan July 1, 2016 at 9:10 pm #

      I’ve been using mmj for a few years now. It helped me with puking up every dinner. But doesn’t touch the pain.

  5. mountainsongbird June 24, 2016 at 9:28 am #

    Some one once told me that apricots help the body retain and use water better.
    I tried it at camp this year because I have trouble staying hydrated too, and it worked really well!

    Maybe fresh or dried apricots without sulfites will offer some relief.
    Also, give your body rest from constant Treatment and detoxing.

    I am encouraged that you aren’t giving up!
    It helps me persevere through my own health challenges.

    God bless and keep you!

  6. Genieb July 25, 2016 at 6:46 am #

    I have been progressively getting sicker with Lyme, babesia and bartonella.
    Heart, nervous system, gastrointestinal, fatigue, choking, paralysis..etc.

    I have worried that the amount of medicine I have been on actually hindered my healing. After going off IV antibiotics for 2 weeks I became sicker then ever. Symptoms I never had before came on badly. I researched and consulted other docs and it was suggested the antibiotics had done two things 1. Weakened my own immune system so it could not help and 2. Caused the bacteria to re-engineer itself and hide until the antibiotics stopped and then emerged in full force from hibernation.

    I am now addressing immune system to strengthen it (see a blood specialist) and doing higher doses of IV antibiotics and pulsing it (with an LLMD) to go after bacterium in its reproductive life cycle…hard to do..because I feel much better on higher doses of IV, but crash when I go off the meds for a day…hate it! But it allows my body to use its own immune system and the bacterium come out of hiding and then are out ready to get hit by IV antibiotics. I do have to take an anti-histamine like alka seltzer plus to balance out herx after being off antibiotics for two days then back on. But over the past 4 weeks I am having glimmers of hope…minutes that give me validation that what is wrong is a bacteria in my body. From feeling like it was over to seeing hope…our bodies are complicated and medicine today is so like individual,silos not connecting the dots.

    Maybe if you can find a blood doctor/hematologist to evaluate your bloods and see if you can stregthen your immune system. All the best.

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