It has been a while, it has been a long few months, these months have been very dark.
It was a year ago yesterday that I finally started treating (my GP reluctantly gave me doxycycline) Lyme disease. I really thought that this was going to be easy..that I would be better by now..that I would have a life again..the one that I always imagined where I am free..and I don’t..yet. There have been so many complications along the way.
At 16 years old I was prescribed a “low dose” of clonazepam (a drug from the benxodiazepine family) to help with my anxiety attacks (which were actually episodes of prolonged air hunger from chronic lyme disease)..it never helped..maybe it took the edge off for half an hour so but it would always come back and I would pace, feeling breathless and scared for hours. Subsuquently years later when I got “sick” (I started having issues in the car where I would sort of freak out and panic at lights..now I know that this was simply because my brain couldn’t process visual stimulation and essentially my nervous system would crap its pants), these were prescribed again..in large doses..I was using 6mg of Ativan and 3.5mg of clonazepam every day plus countless anti depressants to supress a physical illness that nobody had taken the time to diagnose. Instead, I was labelled as agoraphobic with panic attacks (when all I was really doing was trying to protect my fragile nervous system from auditory and visual stimulation..yet I did not know this at the time). I was sure that the doctors were right and had my best interests at heart..I believed that I was mentally ill and I believed that they knew what they were doing..and they did not. Instead they turned me into a zombie..a pilled up person who did not know who she was. When I had one of my first lyme flares back in around 2009-2010, I strongly believed that all of the pills I was taking were killing me (and I wasn’t wrong..they would have eventually), so I cold turkeyed because I was so ill. I spent eight months in hell trying desperately to recover and I was getting there (it just takes a long time to recover from these drugs and the damage they do) and then one day I had a panic attack (very common in withdrawal) and a person that is very close to me gave me a choice 1)go to the hospital or 2)take an Ativan..I didn’t know what to do..all I knew was that a hospital wasn’t the answer and I was being cornered so I reluctantly took that Ativan and I regret it to this day. It took the edge off but two days later I was using about 4mg just to get by…and I wasn’t getting by..the numbness in my throat was so extreme I could barely swallow (I had always been told this was nerves but I know now that isn’t the case and that has resolved with treatment). In that few days I had undone all of the healing I had been doing and I was now back to square one and had to start over. I read up about getting off of this stuff and for the last 4 years I have been tapering off of valium through a specialist. This stuff is harder to get off than heroin and it has been an absolute nightmare on top of everything else.
When I was finally diagnosed, I thought it would be easier to quit because now we were addressing the root of the problem..an infection in my nervous system..so I started tapering at a rapid rate. The recommended rate is about 2-10% of your dose every 4-6 weeks..and I was dropping half every couple weeks.me treatment made this all much harder and I didn’t really connect the two until February.All of the detox methods that Lyme patients have to use to flush the bacteria so they can manage herxheimer reactions also caused my body to flush these pills. I had been doing really well up until about end of August 2015 and was finally starting to smile again..thats when I started tapering rapidly, not thinking that this would have any effect on me. I just kept getting sicker and sicker and my doctor couldn’t figure out why. I was in withdrawal and I didn’t know it..so I kept treating and treating but I wasn’t seeing a light at the end of the tunnel. Most of my days were spent crying, wanting to die because I was in so much pain, both physically and mentally. I was still on a minimal amount but I dropped it all in January and slipped into acute (dangerous) withdrawal in February. I was not doing well and I was really suffering..this was basically a cold turkey and I knew it. I contacted my doctor and asked his advice (as he had warned me about going so fast previously..but I didn’t listen)..and his advice was to reinstate on the amount I was last comfortable at and that was 7.5mg of valium..I cried for about three days before doing it..I didn’t want to..I just wanted to be done but my body couldn’t heal like this..my brain was on fire and I was already struggling under the weight of an infection. I reinstated on March 3..and that day I lost the support of some people that I thought gave a shit about me..I got called “addict”. I had words thrown at me like “you don’t really want to help yourself”, “you are letting yourself get rehooked”. The difference between me and an addict is and addict wants to use..I do not..I don’t want to take a single one of these death pills ever again but I know that my body needs to heal in between making these cuts..I need to be safe coming off and not stupid like I had been..and that is what I have chosen..I have chosen to be safe..even though it is going to take longer..I will come off and I will heal from everything.
It hasn’t been easy..I’m a little over six weeks since reinstating on them and I am still in withdrawal. A good friend of mine (one that I had met through a support group) had recommended her doctor to me..said that she would believe me..she would listen..I needed someone to help me get off of these because my doctor had moved to Ontario (although I still have a prescription until June..it will not be enough for me to finish my taper and I need medical supervision in case things go wrong). I also no longer had a family doctor as I refused to take Xanax to help me through withdrawal (Xanax is a stronger benzodiazepine) and his final diagnosis was “delusional disorder..stating patient was fixed on having lyme disease”..Even with positive results, very few medical doctors believe any of us..we are all just crazy for trying to get better. So going to see this woman was virtually terrifying for me..would she really believe me..would she be objective..would she think outside of the box. My spouse and I came with my complete medical history, my test results and everything we could put together, articles and everything linking lyme to me. I told her why I was there..and I was there because she knew how to properly taper someone off of these pills and that is what I want. I wanted to be upfront with her so she could have the whole picture and I told her that I have “Chronic Lyme Disease”..we talked, I gave her the information and she told me she knew people with Neurolyme..she had treated patients (she is infectious disease in the US..a GP here). She knew that it masked as many mental conditions and she read my results and told me I was not crazy.she told me I have had a really rough go and things were going to change for me! I left that appointment in tears..for the first time..someone listened..She gave me hope..more hope than I have had in a long time..She has run test after test to check for damage caused by my disease and these drugs and my cortisol is really high and my thyroid isn’t functioning leaving me breathless most of the day. I see her every couple weeks for a consult and bloodwork. She doesn’t prescribe pills, she is trying to get me stable enough so we can start withdrawing me from these drugs..but that could take up to six months as I am still experiencing withdrawal.Her prescription..curcumin tablets (I make my own) 4 per day, walking, dark chocolate and rest to get my body under control…and a natural thyroid hormone which I will be starting in a couple weeks as soon as it arrives from the us..in the meantime I am on synthroid. She is also willing to give me some antibiotics but we can get around the whole lyme fiasco by saying its to treat acne..as minocycline is very effective for neurolyme but since I have acne from my wacky thyroid and cortisol, she will prescribe it so I can get well. She is really a god send..I am so lucky to have her in my corner when my corner is very empty now. While I continue to stabilize, I am treating my disease with CBD oil..the antibiotics are very harsh and I need to break from the ones that could throw me back into acute withdrawal since I am just starting to come out of it. I have learned so much in the last while about this stupid benzodiazepine dependance..it has really shed light on everything..just listening to other people talk about what certain foods can do to someone in benzo withdrawal has made this really interesting. I legitimately can not eat gluten! I really thought it was just kind of a fad..but because my brain is so disabled..when you are in withdrawal..glutamate spikes (this can cause extreme fear, panic, hyperawareness, derealization and a whole bunch of symptoms)..gluten really bothers me and I really do feel it when I have ingested it…I know if I have eaten it, it is not going to be a good day. Broccoli also..a certain enzyme in broccoli interferes with absorption and can bring on withdrawal symptoms..so I can’t have that and yes, it does make me feel worse. Instead, I eat lots of leafy greens, big salads and meat proteins. Unfortunately my beloved protein powder is high in glutamine..which once again can cause withdrawal because my brain has lost the ability to transport two very important chemicals GABA and glutamate. So I have to be careful..I have to let my body heal..and that takes a long time..a very long time. I was so excited to be able to have a glass of wine when I was better, but that is not possible as alcohol is an absolute “No” for anyone who has been on benzos..and for two years after a completing a taper. Alcohol works on the same receptors as these pills and can put you smack dab in the middle of withdrawal months or years after you have come off..I do not want that..I want to be free..free to live my life and to be happy..I want to drive a car (I have..I have driven to the store and back and that is huge for me!) and just live and not think about this anymore..I deserve that much out of this not so fun life. Most importantly, I want to be healthy..I have nothing to prove to people who have walked away…I can only make myself better and win this battle..that’s what I’m going to do. I am lucky to have the people that I do..those that have chosen to stand by my side and show their support..I am grateful for that…now I am going to eat yam fries…