Visit To LLMD – New Treatment 

11 Apr

  

Visit to LLMD 

First let me start with a quick update; I’m still recouping from that car ride to the Lyme doctor. For those who are new, my doctor is about a 2 hour car ride through winding roads in wine country or 4 hours plus round trip depending on traffic. I know some travel much further but for me I am homebound and nearly bedridden again so leaving the house is very hard. My brain is still inflamed, I’m more lethargic than usual and can’t seem to get enough sleep although I’m skeeping 12 hours a day. 

My LLMD says although many other doctors have given up on me or called me “too complicated” she says she’s not giving up on me “yet”. This visit was one of those forced visits so I can get the face-to-face to please the stupid pain meds law. But we also went over blood results. That test I posted I while back although it mentions cancer a lot when looking online, it’s an inflamation marker test kind of like the c4a. Mine was high but not very high, which is odd because my body is severely inflamed and in severe pain daily so I think those tests aren’t very accurate as to what we actually feel like. 

She said she wants to help my brain inflamation and swelling but being a natural doctor she doesn’t like prescription meds as much. So she has me back on Chinese skullcap, quercetin and Curcumin. I asked for a migraine med but she didn’t seem to think any were helpful. I get migraines, cluster headaches and regular headaches daily but the migraines maybe 5 times a month. The brain swelling/pressure has been with me for 6 years. Sometimes it’s so severe I can’t even talk. I can tell the difference when I have aseptic meningitis versus the daily brain swelling or herx from the Minocycline in my brain. All are very painful and can cause one to want to end your life but I won’t give up guys/gals I promise. 

She said although my Lyme is 32-33 years old (and I’ve been reinfected in 99′ & nearly died) that it is not responding to anything and therefore not treatable for a “cure” AKA remission. So I’m on what they call a maintenance dose of meds to keep Lyme calm. I was on Minocycline for the Lyme in my brain but will be adding cyst busters and biofilm busters again. She thinks the doxy and Mino are not enough and not reaching the Lyme since mine are in very old cyst form. I will also be on nystatin still for candida that never seems to go away. If you are a long time reader you know I had a severe case that went bad and is TMI. 

I will also be taking Lyrica again but she put me on a low dose since I had side effects. The Lyrica is for my nerve pain and FMS. So I have pain meds for muscle, bone and now nerve pain again. For those wondering how you tell the difference? Nerve pain is the tingling, stinging, feeling of needles, numbness, nagging, shooting pain that comes and goes, sensitive skin, burning skin….etc. My worst pain was in my arms where my RSD was but since I had a few hernated discs explode in my neck (which is like hot lava under the skin) it caused my arms to become numb and have very little feeling to touch. I don’t feel needles in my upper arm anymore. I think it’s called radiculopathy

I’m trying to recoup and save my energy for my IVIG infusion on Wednesday. I get worse brain swelling every infusion so it’s a love/hate relationship with IVIG. 

I hope you all are fighting with everything you have and finding better days. Stay string my friends! 

  

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3 Responses to “Visit To LLMD – New Treatment ”

  1. Brian April 12, 2015 at 8:34 am #

    49erbry & blog readers:

    This is what I have learned as of late: (My Lyme is 25 years old)

    With late stage Lyme, biofilms are an issue, but Bartonella is a very dangerous infection that can enter the brain and can kill you. Bartonella does not respond to abx for Lyme such as Bicillin or Tetracyclines. It can suppress your immunity and turn of its own antibodies, and that of all other diseases. I am told that the late Michael Jackson had bartonella for which he was taking general anesthesia for it as it causes extreme insomnia.

    I read this in Dr. Schaller’s bartonella book (Amazon) and it wasn’t until recently I learned how dangerous this infection is.

    I hope this info helps some.

    I hope us all have better days in the coming summer months. (= ^ x ^ =)

    Brian

  2. Brenda Hardison April 12, 2015 at 5:05 pm #

    Wishing you the best, sounds like you are going through hell, I am but not as bad as you are. I found out about a program that you have to be on for a year, but it clears the Lyme’s out of you. It takes a year rather then the 6 months that the antibiotics do, it is called Cowdens Support Program. Please go on the internet and check it out, it is about $300.00 a month US. I know a few people starting it and feel better after two months of starting. I will be starting this program, people are helping me pay for my treatments (family) as when I became too ill to work, after 33.5 years the lovely company I worked for cut me off of STD after 6 weeks, refused my LTD and when I applied for unemployment, work put that I quit my job, not that I was on sick leave, with many letters from my doctor stating I was incapacitated. So you find out when you are not well, what the world is truly like.

  3. gwsevt April 23, 2015 at 4:23 pm #

    Hi, I’m so sorry you are going through so much, I too have had Lyme for at least 25 years they say so I can relate to your journey. I’m curious about the IVIG infusions you mentioned. How long have you been getting them and what exactly are they aiming at with this treatment in you? You mention a love/hate relationship with it and I take that to mean that while side effects are miserable you must also be seeing and or feeling some benefit. When you have some time and are up to it could you tell me a bit more about those details? No rush, I do not want to add to your plate or use any of that energy you are trying to store up, it’s much more important you use that on you but if you happen to have some extra or need something to focus on while sitting in a waiting room or getting infusions I would love whatever you are willing to pass along.

    Hang in there, you sure are fighting the good fight and I know it will pay off eventually. I’m sending lots f positive energy your way.

    Thank you for sharing. 🙂

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