Archive | February, 2014

UCSF Visit – Pain Management

11 Feb

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UCSF Visit – Pain Management

I took the long, torturing ride to UCSF yesterday. I was car sick in the first 5 minutes. It’s always good to see what the outside world looks like and see the sun though so that was a plus. I took some iPhone pictures I edited below of SF. I also had lunch and tried to enjoy the scenery but I was in too much pain and too sick to take it all in.

So the visit was not really what I expected. The Butrans patches have been burning my skin and I have red, square burn marks all over my arms, chest, back but they decided to keep me on the Butrans patches and up the dose to 20 mcg (all the FDA allows in the US). I asked for the best pain med they had just to have even one good day a month and the doc said “you are pretty much on it and there are no other options or better meds I can put you on that you haven’t already tried in the same pain med class”. He gives me ‘cancer patient/ chemo meds’ he said.

So my new treatment will be Butrans 20 mcg patches daily,  6 Norco per day, and Ketamine Infusions that he says is a special cocktail that he has a recipe for (not sure what else is in it).  He said I will need an anesthesiologist while getting the Ketamine since his cocktail can make me hallucinate, space out…etc.  I know Dr. H office gives Ketamine but not sure if it is this high of a dose or the same cocktail. I can get the Ketamine infusions as often as I need them each week (on top of the Butrans patch and Norco).

I will be also taking Methadone on the months I don’t use the Butrans patches so I don’t build a tolerance so fast. So I will stagger the meds such as Butrans one month then switch to Methadone then back to the patch the next month and so on. For me these meds just take the edge off enough each day but don’t really “stop” the pain. I guess you just kind of get used to the severe pain as weird as that sounds so I can seem like a person not in this much pain if you met me.

The Ketamine he says is to “reset my brain” and hopefully the pain will go away for a day or two while the other meds are still helping. Since I have so many medical issues and old injuries that cause all this pain this isn’t really 100% just a Lyme thing so I hope this doesn’t scare new readers with Lyme. Although the Lyme & Fibro do cause severe widespread pain so don’t get me wrong.

Now I just need to find a better PCP or hopefully my new LLMD office can write the scripts for all my new meds. There is no way I can drive to UCSF every couple days for Ketamine infusions so I have to find a near by place to do them. I know my current (evil) PCP will have a fit with all the new meds and probably refuse to write up the prescriptions (UCSF can only recommend the meds and my doctor has to fill the meds…if my doc refuses then UCSF will talk with them or fill them their self).

Never give up hope!

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UCSF 1UCSF 2UCSF 3

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Thank You Friends & Followers

7 Feb

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Thank You Friends & Followers

I’m really exhausted and feeling weird from the minocycline but I  just wanted to thank every one of you who comment or give me tips and advice or inspiring/kind words. I really appreciate you all.

When I started this blog it was just a way for me to share what a person with Lyme disease and other illnesses (lupus, CFS, FMS, Hypothyroid, Dysautonomia, POTS, possible GP…blah blah) goes through. I thought maybe I would get a reader or two but never expected 500-2000 readers each day. I wanted to document my journey and keep records for myself but little did I know I was helping others in the process. I usually hold nothing back since I think people need to see and hear the truth about Lyme disease versus the crap you read on the CDC web site.

When I started this blog I knew I had Lyme disease but I never had solid proof so I thought one day I might have to change the blog name to whatever illness I really had. Last year I received the solid proof of my Lyme disease so it was good to know that I wasn’t giving all you readers the wrong information about the wrong disease. I also didn’t want to find out that after 3 years of abx treatment that I didn’t have Lyme. I remember the tick bites, remember getting very ill after the bites and now I have the blood culture that grew 3-4 spiros in it in a week. No matter what PCP tells me they need more evidence, I know for sure I have Lyme.

Anyway my mind went off-track sorry…… I just want to thank you all for the feedback and for motivating me on my down days. I have my off-days too where I just want to lay in bed in pain and I have negative thoughts about things. I have always been a happy, positive person so I like to help others when I can and cheer them up. Usually I do that with positive messages on Instagram or a blog post. Sometimes all it takes is a kind word to someone to make their day. So today send a true friend a kind word and make them smile.

 

Some annual Blog info from WordPress that really made my day:

“The Louvre Museum has 8.5 million visitors per year. This blog was viewed about 120,000 times in 2013. If it were an exhibit at the Louvre Museum, it would take about 5 days for that many people to see it.” (never thought my blog would be viewed this much!)

Where did they come from?

157 countries in all!
Most visitors came from The United States. Canada & The United Kingdom were not far behind. (wow thank you and this just tells you that Lyme is real and is EVERYWHERE!)

 

Stay hopeful and stay positive and together we will all get through those dark days.

 

 

 

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Future Appointments – LLNP & UCSF

4 Feb

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Future Appointments – LLND & Pain Mgt

I will be going for my first visit to the Gordon Group towards the end of February to see NP Mara Williams. I talked to her daughters a few times last year (one has lyme) and I know her from her book Nature’s Dirty Needle and her Twitter account. I have been feeling worse and all I want is something to give me a few good days each month. Right now the docycycline (third time on it) and minocycline are doing nothing. She does not take insurance as I know some have asked and this first visit is $400+ compared to $35 at Hynote’s office (sigh). But they did mention phone appointments for the rest of the year at $100 a pop and no travel makes me happy.

I will be going to UCSF to see my pain management doctor on the 10th of this month. Last visit I believe he mentioned getting Methadone as my next option but I have no idea what he will give me. For any new readers I have tried nearly every pain killer known so my options are becoming limited. I just hope after traveling that far and getting my prescription filled that my insurance will cover the new med. We already know they never cover most lyme meds so I always have my fingers crossed.

I have a lot on my mind and private things I cannot share about people in my life at this time. So I am pretty spacey and down lately but I always stay positive. Luckily I have my mom & best friends to help me get through these tough days. One of my newer friends has been there for me daily and I appreciate her a lot, she’s awesome. It’s good to find people who know exactly what you are going through not only with our health but with life problems. It really helps us get through those bad days where we just want to sit in pain and cry. I’m sorry I cannot be there for most others or reply to comments the way I would like. Things will get better though, I know they will.

Stay strong, stay positive and keep up the fight!!

 

 

 

 

 

 

 

 

 

 

 

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My Memory Loss & Lyme

1 Feb

Confused-Man

Memory Loss & Lyme

There was a day recently where I had my iPad open on some Lyme article. I started to read the article when I thought, “wow this person has the same medical problems as I do”. I scrolled up to the top of the page to see which web site I was on ….. it turned out to be my own blog and a post I had written last year. The post looked foreign like it was from someone else and I don’t remeber using some of the words or discussing what I discussed. I sat there and said to myself “is my memory that bad”.

I couldn’t even tell you what I have posted on my blog in the past few years I have been blogging. That is one of the reasons I started the blog (besides helping others and sharing my story of lyme) was to keep my journey written down. Now I can look back and see what I was going through the year before or what symptoms have improved or maybe they are worse. It is hard to keep up with this blog but it is worth it if I can reach out to others and they can relate.

I feel like the movie ’50 First Dates’ where Drew Berrymore wakes up each day and had no memories from the previous day. Most days I cannot tell you what I had for dinner the night before, what I watched on TV…etc. I never know what day or date it is. About 4 years ago my memory started to fail me. I have both long-term and short-term memory loss. Just need to get this Lyme under control and get my memory back.

My friend and I do an annual pre-draft for the NFL where we pick the first two rounds of college players turning pro. We predict who we be stars and who will flop. It keeps me busy and its fun. Well this year my friend messaged me ready for the draft and I could not even remember players names or colleges so I gave up. It was really hard for me and confusing. This is the first time I had to pass on the draft.

I know there are a lot of you Lymesters (my friend Victoria’s word) who know what I am talking about. Someone will bring up a memory from years ago and you smile to be polite but in your head you’re thinking “I have no idea what they are talking about, I don’t remember that”.

I have been taking herbals for my brain and memory but nothing seems to help. I just have to find the right combo of treatment to get my memories back. We have to hold on to hope and always keep going no matter how hard the situation is. I hope you all have a much better pain-free weekend. Time to get off the computer and lay down.

 

 

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