Happy Holidays 

20 Dec

Happy Holidays to you all! 
I just wanted to take time to say thank you all for reading and commenting over the years. I wish I had more to share and things to be helpful but since I started this blog my brain has gotten worse and more pressure so I can’t write like I used to. I started this blog to share my story and to help others who are going through the same or may think they have Lyme, lupus, immunodeficiency, chronic illnesses…etc. I’ve seen a ton of doctors since starting this blog and I counted around 30+ doctors I have seen. 90% of them were not helpful or made my mom cry, were mean, kicked me out of their office….and all because they didn’t want to help me. I never provoked them or was mean to them, I only asked for help and was treated like a piece if trash. It’s a shame because I used to respect doctors. I currently found a doctor who truly cares about people. 

During the holidays is always a sad time for me because we no longer have family gatherings anymore in a long time. Even if we did I’m too ill to leave the house to visit them. I’m not the same person I used to be. I don’t remember what feeling “Normal” is like or having energy, feeling excited, or having all those feeling like a healthy me once had. Lyme, Lupus, PI, CFS, heart issues, brain issues have ruined my life. I sit here every night trying my best night to cry in front of my niece or let her see how sick I really am. I don’t remember a day in 8 years without a fever, burning face, headache, head pressure, pain from head to toe and being so exhausted I can’t move. 

I’m not looking forward to another tilt table test and puking and being dizzier than usual for days due to the test. I’m seeing my new cardiologist in a couple days. Might be DOIMG the stress test, heart monitor and more before Christmas. But I’m getting worse and nothing is stopping the Lyme. I don’t want to go back on IV antibiotics since it ruined my body last time. Had some very scary things happen that nobody should go through. For now I’m staying with my daily oral antibiotics for life. 

Let’s just hope something breaks through for Lyme and health issues one day. Don’t give up hope. Try to enjoy your Christmas and never give up! 


11 Responses to “Happy Holidays ”

  1. Elizabeth December 20, 2016 at 9:24 pm #

    I am so sorry you have to go through this. I’m thinking of you

    • 49er Bryan December 22, 2016 at 2:08 am #

      Thank you, take care and I hope you are well

  2. Aleksu December 21, 2016 at 3:33 pm #

    The dizziness and fever sound like Babesia. Have you taken artemisinin/wormwood already? This is a more natural approach to Babs, though it can also be intense. I take it for my Babesia which has become chronic, and even the lowest dosage at 5 days on 5 days off can be trying with regard to herxing, but it beats nausea, vomiting, fever and chills, and vertigo. I also had to go back on the Malarone (Atavaquone and Proguanil) for Babesia, and am disappointed that none of the Medicare Part D insurance plans provide any coverage for Mepron, calling Malarone the generic version of Mepron, which isn’t quite true, they are different drugs in very different forms. The Mepron is running over $2000/month now, the Malarone moved up a tier for next year so will cost me around $150/month. Egads.

    Also, I recently had an endocrinologist walk out of the appointment on me, so at least it’s something Lymies have in common! Also had a GI doctor tell me he didn’t know why I had come for a follow up since he didn’t know what was wrong with me and couldn’t help me, except to suggest I stop taking all medications for Lyme. Which would mean I would start dying again from untreated Lyme. He provided no referral for me to see a GI doctor willing to look harder. I even gave him 9 pages on GI issues with Lyme and other tick related illnesses, but he was not interested in looking into whether or not those things were behind my GI problems.

    Good luck in your recovery journey!

    • 49er Bryan December 22, 2016 at 2:07 am #

      Yeah I’ve had Lyme, babesia, bartonella, other confections for 33 years now. I’ve been on Mepron 3 times, malarone a few times and artemisinin up until I did a test that my bugs are immune to wormwood. Nothing seems to get rid of it. I hope you find some luck with your journey. Don’t stop the Meds, when I stop it gets worse. Keep up the fight

  3. Marjorie A. Krull December 25, 2016 at 7:02 pm #

    One of the most difficult things is that while there are overlaps in our symptoms, no two people infected with Lyme Disease are identical and what works well for one patient is useless on another. I first contracted Lyme in 1978 and reinfected in 1980. While a true cure may not come in my lifetime, I remain hopeful. As my body and mind has been robbed of their abilities, I continuously seek to counter my limitations by savoring my current abilities and finding joy in the people and beauty around me. There is very little I can control in my world. However, I still have control over my attitude. While my approach may not be right for everyone, it gives me strength, fortitude and peace as I continue to fight the fight.
    While I am struggling to bring down 103 fever, extreme weakness, pain and lack of coordination, (Thank goodness for backspace keys.) I am treasuring this Christmas. I have a wonderful family and amazing friends. Our RV is currently parked in central Florida, surrounded by Live Oaks and swamps with incredible wild life.
    I pray that each and everyone of you can find your personal joy during this holiday season.

    • 49er Bryan December 27, 2016 at 3:08 am #

      That’s all we can do is live life even with disabilities. Enjoy your RV trip and the beauty of life all around you.

  4. Ang Pro December 26, 2016 at 10:53 am #

    Hi Bryan, Thanks for blogging about your experience with treatments and your healthcare.

    I think you are doing a great service sharing your experiences.

    I was so lost and finding your blog helped me when researching Lyme.

    I always feel compasion when I read your posts…

    I hope for you, a better place, feelings of comfort, and relief. I understand pain, in all that I go thru.

    Take care, find your own peace and comfort, no one will ever be able to provide that for you.

    On Dec 20, 2016 10:33 PM, “Lyme Inside – Living with Late Stage Lyme Disease” wrote:

    49er Bryan posted: ” Happy Holidays to you all! I just wanted to take time to say thank you all for reading and commenting over the years. I wish I had more to share and things to be helpful but since I started this blog my brain has gotten worse and more pressure so I”

    • 49er Bryan December 27, 2016 at 3:07 am #

      Thank you for the kind words. If you need some help check out lymedisease.org and there are numerous groups on Facebook and other places for help. Hope you are getting good care.

  5. V. Ross Johnson December 26, 2016 at 6:40 pm #

    I tried abx 14 months IV, and failed. I have found full relief from my pain of 23 years on herbals and hyperbaric oxygen treatments. All through Internal Medicine of Northern Virginia. A clinic run by Dr Samuel Shor, the president of ILADs.

    • 49er Bryan December 27, 2016 at 3:08 am #

      Glad it’s working for you. Good luck with your journey.

  6. courtwilkins January 29, 2017 at 7:15 pm #

    I’ve had “rheumatoid arthritis” for 15 years, and as of March of ’16, I was re-diagnosed with Lyme. Before the diagnosis I’d had both of my hips replaced and both of my wrists fused, and was on countless drugs. As soon as I got hired to work at a holistic clinic, one of our bonuses was that we could see our physicians for free. When my symptoms were shooting off the charts, the vertigo, the brain fog, the memory loss, the ringing ears, the insomnia, the fatigue, and let’s not forget the joint pains (oh the knees and ankles), etc…I got in with one of our leading Lyme specialists and sure enough…babesia and borrellia.

    Fast forward through having to quit my job, and being introduced to a friend who recovered from Lyme + having his entire lower intestine removed (because of this doc), he gave me the office number to a place in Idaho – Lyme Stop…headed up by Dr. Smith. Seeing as this ride I’m on has gone downhill quite fast, I agreed to go see him. I’m going to be there in late February ’17. The only reason I’m telling you this is to maybe see if anything on his website catches your eye. Word to the wise, the testimonials might make you cry. In a good way. Check it out: http://lymestop.com/

    I’ve been on crutches for pushing 9 months now because of my legs, and the rest of my joints feel the areas that are being compensated for. This doctor has given me hope, I hope this lifts your spirits and possibly could give a new hope.

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