Where are we now…

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…

 

 

-M-

Five nights

I haven’t posted in a long time because I have been relatively discouraged by things. I haven’t been able to do much since I got back to Alberta at the end of September. I had plans and expectations that by the time I got home I would be half way to being awesome..I’m not..I’m very far away from being well. I stayed on heavy antibiotics up until yesterday when I woke up really short of breath and struggling..upon consultation with my doctor it was agreed that I was neurotoxic and needed to stop all meds (minus vitamins and supplements) so my body could flush and remove toxins. This has been the worst symptom for me..feeling short of breath and air hunger. It sort of came back a week ago and I was up most nights freaking out because I felt like I couldn’t catch my breath..I was doubled over in panic and fear and pretty much inconsolable as I was sobbing that I was dying. This went on for a while..it happened today and it happened yesterday..and its still happening as I write this. This is also my worst herx reaction to medication. When I woke up this morning (after about 4 hours of sleep..I can’t sleep after Brad goes to work because I don’t feel safe and I am afraid that if someone isn’t watching me then I will suffocate in my sleep) I felt pretty crappy and decided to cure my shortness of breath with cryptolepis (a treatment used for malaria and babesia)..I guess I should not have done that as it put me in a really bad spot all day..I have had one of the worst days in months and I just want to feel better. I have had a buttload of green tea today to try and flush my system and lots of greens to help remove toxins…yet I don’t feel good. I am sniffling like crazy as my body struggles to detox and remove the toxic sludge that has accumulated in me.. I am exhausted and really need sleep but am to afraid to lay down. I have taken everything under the sun that I can think of to help move this out of my body so I can try and relax but my head still doesn’t feel right..my body is in spasms and I am twitching (from my internal organs..hard to explain..but I can feel it inside) and I just feel really ill. I have been trying to have better days but it isn’t about trying anymore..I can’t just forget and move on because this is with me every step and breath I take and it often leaves me feeling short of breath. I am discouraged by all of this because I need to be able to handle meds so I can fully recover and I can barely handle antibiotics because they make me so ill. My doctor here is running some tests to see why I can’t clear my detox pathways and why meds are so difficult for me..once we have the answers we should be able to limit the herxing so I can be somewhat comfortable during this fun fun journey back to wellness.

My birthday is in 10 days…I was hoping by then that I would be up and well and able to do things like go for coffee and hang out with my friends but it doesn’t seem like that is going to happen. I have been out for coffee once a few weeks ago and was actually starting to feel a little bit better and now I am here again in this neurotoxic mess…hoping that by the end of the night I will be comfortable enough to go to sleep..I really need sleep..I am so exhausted and my body can’t heal being so darn tired. I just want to have a couple good days that I can enjoy being around my friends and family..I love people..this is one thing that I really miss..being able to tolerate loud noise and being in groups of people..I don’t know when this is ever going to get better..when will I get back to a point I am comfortable with..I don’t even know what that feels like because I have spent the better part of my life accepting what it feels like to be uncomfortable. I don’t want to go back to before..I want a new start now..before this got really horrible I couldn’t swallow my own food and I couldn’t go outside or be around noise because it would leave me short of breath..weird isn’t it..and everyone blamed this on nerves..this was just who I was..no..its not..its a disease that has invaded my nervous system and has made me very sick..it is the reason why I have lost so much life…I just want to have a piece of happiness back.

It’s hard to stay positive when you feel this sick but don’t look it. My skin is terrible right now..I haven’t had acne like this since I was a teenager and this is because of all of the stuff that is dead and coming out of my body. Hopefully a couple weeks off of meds will help it clear up a bit. My body is broken and my head isn’t in the right place..I feel pretty horrible and I just want an end in sight but there isn’t one.

I am lucky that I have some pretty amazing friends that come and spend time with me when I am at my worst or when Brad goes to work..its pretty awesome to have their support..I don’t know where I would be without them.

I really hope the days pick up..I could use a few good ones..all I want it to be able to walk my dogs and not think about being sick for once. To maybe enjoy a few afternoons and evenings with friends watching movies and catching up on old times. I miss life..I miss living..this is the most painful thing I have ever walked through..it is painful for me and painful for the people around me to watch me struggle. I know that one day this will all be behind me and I will have a life again..it couldn’t come sooner, I have been waiting for this for a long time.

I really felt like I needed to jot things down tonight because I have had such a bad few days. I need to see the light at the end of the tunnel because the last couple weeks it has been very dark where I am. I reintroduced CBD oil a couple weeks ago and this has been the reason I have been reacting so badly..it really works..it has killed off a lot of critters..I was able to sit and watch TV the other night..something I can do but I can’t really sit to close so I usually sit at the table..but I was able to be comfortable on the couch and watch for a bit.

I am going to pulse all meds for a few weeks unless my problems with swallowing return like they did last time..if this happens then I will go back on a low dose until my body can effectively remove the toxic sludge. Most people tell me to take it easy and just go at a pace that my body can handle..for me that is as slow as a turtle. My body does not do well with the majority of medicines. If I had actual money I would be in the USA on IV with a handy PICC line in my arm..but I don’t and treatment for this disease is ridiculously expensive.

Yesterday was so bad I screamed hard core at my poor dog..this isn’t me..I just lost it and freaked out at her and Brad..I sobbed afterwards because I don’t know who this person is..The anger I feel is uncontrollable, it just takes over and its unfortunately a die off reaction..I hope that this improves over time because I feel awful about screaming at her and everyone else.

I wanted to share a happy update but I don’t have one to share..Ive been down in the dumps for quite some time and I am hoping that soon it looks up. Prayers are always welcome as I could really use them some days.

Maybe this time next week things will be different..maybe I will be a lot better next week..I certainly hope so..I can’t go on living in the dumps like this..I need to be somewhat functional so I can actually be able to enjoy life.

 

-M-

End of November

It’s the end of November already and I was hoping to be a little smidgen better than I am currently. My Lyme tests came back and they were essentially negative..only 1 in 100,000 cells. It doesn’t really mean much other than the fact that there isn’t much of it in my blood, it is still in my organ systems however and that is where the action is happening.

I’ve struggled with severe shortness of breath and chronic yawning since about April of this year. Before my diagnosis came I suspected it was a culprit called Babesia (it is a protozoa that infects your red cells and is very similar to Malaria but it to comes from ticks). I was really shocked when my testing came back negative for it and my air hunger and chronic yawning was said to be from Lyme itself. When I went to BC to start IV meds, I was started on an herbal treatment (very common and highly potent) to treat Babesia because of how bad the shortness of breath was. With the right antibiotics (clarithromycin) it worked really well and my shortness of breath completely disappeared and would only reappear when I was having a bad herxheimer reaction. After I changed meds and was put on Azithromycin (I would rather die than take that again), it came back really badly. I was on azithromycin until the beginning of October and then I stopped it. I figured that it would eventually disappear (pppfftt..azithomycin stays in your system for about 18 days give or take about a week for me as I don’t flush things very well) but it didn’t. A couple weeks ago my insides started to feel like elastic bands snapping back and forth (which was weird but I remember describing it to Brad that way). Someone on my forum had mentioned that this was pretty classic of a Babesia infection..Dammit. I started back on herbals about 12 days ago and within three days my shortness of breath had almost totally disappeared..I was really excited, I was starting to feel good again and I even managed to see Spectre! I still have a hard time with movie theaters and loud noise (and its not because I am old)..its a lot to process on a big screen as opposed to just watching a small screen with the volume down. So my heart rate throughout the whole movie was so high I thought I was going to have a heart attack..pretty classic for me when my nervous system has basically crapped itself. Regardless, I was so happy that I was able to see it..I love James Bond.

Unfortunately along with treatment comes an increase of other symptoms..and my other most annoying symptom is chronic sniffing (also classic Babesia)..I look like I have a drug problem and I can’t stop sniffing some days..it is very frustrating. I was actually taking a lot of my herbal meds but the herxing got to be out of this world..my heart rate was way up and I was having intense waves of fear (fight or flight I guess you could say) that would just come out of the blue (literally while I was sitting eating or doing laundry). It would go on for hours and I always want to pick up the phone and call someone to come help me..when there isn’t anything that anyone can really do..just have to play the waiting game. I had it pretty bad last night so I thought for today I would dial back my herbals and keep everything else the same. I was doing about 100 drops of my herbal stuff doesn’t seem like it would work..wow..it kicks my ass) in doses of 25 four times a day but it is way to much so I scaled back and have only had about 30 drops today. It is clearly working and I feel like total crap but in the next couple of weeks I am hoping that I will finally turn the corner and start to be able to do a bit more. I walked to the mailbox with my buddy (Scout the dog) and then came home..that was the extent of my exercise. I am pretty sure I have gained a few pounds since I got back since I have been using any excuse to eat granola..mostly “I have to take my probiotic”..to hard to swallow so I dump it in a bowl of cereal..its homemade granola and it is delicious (pumpkin seeds, slivered almonds, pecans, coconut and dark chocolate chips). I figured I would have a hearty breakfast this morning..it was either a protein shake with fruit and avocado or eggs..I opted for the protein shake and I did eggs with salsa for lunch no bacon. I really need to start eating better but I have been in quite the rut feeling awful, lonely and depressed. Mostly when I am here alone..it is quite terrifying to be by yourself when the “fear” hits. So far I haven’t been to bad today..maybe a little bit earlier but it hasn’t been terrible and I just took my herbals a little over an hour ago..it usually takes about 3-4 hours for me to really feel the full effect (which I am hoping isn’t terrible tonight as I have to take more in about two more hours). I spent the morning lying in my bed (until 1130) playing Mario on my Nintendo DS (yes I have one..it is old..but I didn’t have a GameBoy and I was clearly deprived as a child). I forgot how hard video games were and how frustrating it is when someone is talking to you in the background or a cat walks in front of your face and you fall off of a cliff..that was my last life..thanks. I eventually got to mad to play anymore (although I might play later..only have a few more levels to prove that I am better than Brad…) and went and baked gluten free dark chocolate, pecan cookies..they are fantastic.

I am trying to be a bit more positive..it is really hard when every day you wake up and things are still the same and you don’t feel like you are getting any better at all. I know that isn’t the case but that’s the way I feel almost every single day..it really blows..chronic illness blows. I never thought that I would ever have to deal with something of such severity..but my life was far from perfect and I should have seen this one coming from a million miles away..there were so many things that I was unable to do anymore and I kept listening to everyone else tell me that it was “just me”. I know who I was once…I was happy..loved to be around people, loved to crack jokes and loved to be the centre of attention. Now I can only tolerate groups for short periods because its just to much for my sick nervous system to process. I knew who I was once..I want to be that fun person again who had almost no fear (except for maybe heights…I have never really liked those). I was blindly following the masses and believing things that I know I shouldn’t have because it never made any sense to believe what I was being told by every single doctor out there..they don’t know me..they don’t observe me every day so it is to hard to just label someone as having “nervous issues” when something literally changes over night and they can no longer do it. That is what happened..things slowly started to change and I slowly lost what it felt like to be a human being and to have freedom. I am anxious to have that back. I have been able to recall a lot in the last while and am astounded at how little sense some of this makes which totally signals sickness (to me anyways). I remember a couple of winters ago standing in the field close to my house with my dog and all of a sudden my throat went so tight I couldn’t swallow and I felt like I was choking and I needed to run but I couldn’t because I was “stuck”. Open spaces used to really terrify me because my perception was so off. A field looked endless to me and was quite frightening just like roads..I’ve walked through many fields since I started meds and it always brings tears to my eyes because I can do it and it doesn’t bother me! I have been the passenger on many big roads that used to scare the crap out of me and they don’t scare me anymore..It’s weird how this has manifested in my brain..It’s even scarier to think of what it is capable of..It takes people down all the time. My vision for years was incredibly glossy, not blurry..almost as if someone painted clear varnish over my eyes..it was getting worse and quite frankly I truly believe that I was going blind..slowly. I met several people on my journey in BC that had been blind from this and who can see again. Many people who were bedridden and are walking again. Yes, it gives me hope that one day I won’t have to endure any more torture from my sick nervous system. I will never beat this completely and that makes me sad..I will always fight it, I will always be on alert for signs of sickness and I will probably always be afraid that it is going to come back and make me ill like I was in
April of this year.

On a side note..I have mice in my house and cats that clearly don’t give a crap as I still have mice in my house..They are cute and I hate to see anything be killed but my immune system is weak and I don’t have a spare N95 mask..I am going to be paranoid about this until they are gone..we are at a total of 8 mice (#8 got away…not sure where he went but haven’t found any bodies yet..shudder).

The one good thing about not leaving your house much is that you don’t have to wash your hair so much or put on make up (never really did much anyways) or wear nice clothes..usually leggings and a sweater for me or PJ’s most days. I get out of bed, shower and usually get back into an outfit that resembles PJ’s. I have a closet full of nice clothes that I have no energy to wear and also because it is cold and I need hoodies, slippers and blankets. I am hoping that I will feel well enough by Christmas that I will actually want to wear something nice and put on make up..my skin is really horrible right now..it is winter and I need a full body exfoliation…I thought that I would do better this winter because I would be a bit warmer..nahh..my peripheral circulation is probably always going to be terrible. Last night I slept with snowboard socks and slippers on. I have to be cold blooded or something.

 

 

-M-

Frustration and Aggravation

A few days since I last wrote anything but I feel like it helps me deal with everything that is going on inside of me..I think anyways.

I am frustrated that things haven’t moved faster, that I am not where I was at week 6..and I am trying to not get to down about it because this really is a rollercoaster ride..I’m in a bit of a slump where my nervous system is hiccuping a lot and I feel defeated some days. I am slowly picking up  and I am slowly starting to feel a little better..its a long road..there are lots of bumps still..this isn’t an easy fight at all.

My nervous system is essentially paralyzed..it has a hard time with processing..anything and if you think about what your brain does all day..it does a lot..everything you look at involves input into your brain and your brain has to try and process all of that..everything I do on top of what I have already done can send my poor nervous system over the edge. I tried to pace myself for Walking Dead on Sunday..didn’t do much and was really excited to watch it..had a Starbucks coffee, grocery shopped and bought pet food and I found that the amount of movement from watching the Walking Dead was just to much..it sent me into hyperventilation in about five minutes..I spent a while trying to recover in the quite of my bathroom.

I also haven’t been sleeping great, lots of insomnia and even melatonin isn’t helping..but I have been waking up with a lot of fear, panic etc. and this only started when I started taking Azithromycin (I have been off of it for about 13 days now..but it stays in your system for about 17 days total). I’ve stepped up my nutrition and am eating really really well..lots and lots of fruit, green vegetables and lean proteins. It is helping..honestly when I eat well I do feel better. I tend to focus so much on the negative aspect of this thing and I forget what is so very positive about it.. I have a diagnosis! I have hope!! I spent years with major difficulty swallowing food that left me scared to even eat in public because sometimes I would actually choke..now I can stuff my face!! That is fantastic!! I also have an incredible metabolism and haven’t gained any weight..so that is super good too! I spent years being afraid of weird things like crossing the street because everything looked so weird to me and now it isn’t scary anymore! This is all good and there is so much to be happy about and so much to look forward to when I am recovered. I am only six months into treatment and I have quite the way to go but I am so excited to hang out with my friends, have BBQ’s next summer, go camping and just feel like I am supposed to feel (whatever that is)! I think it is really important to chronicle this because I want to look back on it when I am well and see how far I have come..and I have come far already..baby steps..each day is a little bit better! I also can not wait to hold down a part time job and I hope that is possible in the next coming weeks..I want to be able to get out because I haven’t felt well enough to really be out where there is so much input for my brain to process at once..I do need a lot of quite to help me and I often need to take breaks after phone calls, probably after writing this just to let my system find its happy,zen place again.

I have done really well today..I absolutely hate being alone because I am pretty scared of what my body does (basically feeling short of breath and freaking out). It isn’t all the time that I feel this way and I had a really good window this  morning for a few hours where I felt almost normal..but once I get going and start doing things, sometimes it gets to be to much and my brain just craps itself and I need a fairly lengthy break. I tried laying down for a couple hours but couldn’t sleep. I made granola, cleaned a little and made myself a healthy lunch..and I’m going to go and eat an organic orange because they are so damn tasty! I have another five and a half hours of slumming it alone here and another day of being alone and basically doing nothing..it does get boring. I have tried reading but sometimes its to much..even this is to much and I am probably going to pay for it (I already am..) later. I have big plans for this evening..an epsom salt bath and quite..yep..big plans..and I have no idea what to eat for dinner..I have absolutely no chicken in my house and I am probably going to say screw it and have a protein shake with fruit since I only have enough greens to last me until tomorrow..I need groceries.

I am definitely starting to pick up a bit..I feel almost ok..not quite there but getting there and I have a 2pm phone appointment with my doctor on Friday just to go over what we are going to do next for antibiotic therapy because the last two months have been horrible..my guess is probably back on doxycycline for a couple months..I’d like to take it really slow and start at a small dose and only when I know my body can handle it increase it. I know I need to be on a lot but until my immune system can handle everything, I don’t think I can. I will win this race eventually even if I have to go at turtle speed so I can have some tolerable moments in life. I need to have some happiness..somewhere along the line I lost that feeling of joy and happiness and it wasn’t this thing that stole it from me..it was something profound and deep from a long time ago..this just made it worse and it made me realize that I have a lot of work today on myself as well. My mind needs to be able to let go of all of this stuff that I will never be able to change and although I am getting close to being able to, I don’t think I will be able to do it without help. At least I am admitting it..yep..I am angry, sad, frustrated, tired, anxious, depressed and scared and I do need help to get past all of this so I can have a really great life. This will all happen..its the waiting for it all to happen that sucks..nothing good ever happened over night I guess and this has been long..there will be many more days where I don’t feel good and there will be many more days where I feel ok and some days where I even feel great..then one day they will all be great days and I will forget about all of this. I am not looking to far ahead..but I can see how wonderful life is going to be when I am through this storm..It will be really rewarding when this is done!

Off to get some Vitamin C and a bit of quite.

-M-

Remembering where I was

I thought it was important to capture the progress that I have made in light of all that seems dark lately..

In the last six months I have come so far..

In April I couldn’t step into a shower because the sound and feeling of the water would bother me so much it would literally send me spiraling into what was almost a panic attack but not quite..it left me breathless. I could barely stand on my own two feet to shower and would often have to sit down and take breaks just to wash my hair. Going outside was just as difficult, I couldn’t stand the noise and brightness of the outdoors and it would bother me..everything would bother me. I paced relentlessly around because I could not sit down. My heart was racing at 145bpm resting and the palpitations were endless. I was so dizzy and my vision was so altered that I had a hard time just being..

I was terrified of being in cars because the rides would often leave me breathless and totally freaked out. The roads looked out of proportion to me..bigger..endless..it terrified me and I didn’t know why. My memory was so terrible and my thoughts were often clouded because I just couldn’t think clearly. I even have a hard time remembering how bad it was but I still have nightmares about it.

A lot of those things have improved..when we were driving on the weekend, I took a look at the highway and it looked normal..it didn’t look blown out of proportion or distorted..it was normal and I cried. I have shed a lot of tears of my progress and a lot of tears over what seems like a setback but really isn’t..just a reaction to the antibiotics..just a reaction to the sizeable bacteria load that is trying to make its way out of my system..It’s painful and stressful to even write about it most days..I think how I feel now and although I “feel” like the end is near, that is just my sick nervous system talking..its not..I am surviving this..I am making slow improvements..one day I will hit remission..that day will be glorious..it will be a day to celebrate..For now, I am just going to go with the flow..I still have a hard time using computers and watching TV most days..some days are really great others (when I am on heavy antibiotics) are quite difficult. I have about another nine days until these meds leave my system and I am hopeful that I will catch a break. It’s a very dark place to be..this disease..I am very scared most days and I cry a lot over what I have lost and what this thing has stolen from me..It has been taking things for so long..as long as I can remember..it stole my high school graduation from me because I was too panicky to walk with my classmates…I wish I could do this over again and then I don’t..I don’t want to change things..I have grown so much..It has taught me so much about myself and about how strong I am..I am strong..I know that this gets better and I know that one day everything will be ok..I have angels watching over me and guiding me on this journey..It will be ok one day..One day I will get to have a glass of wine again.

-M-

Humpty Dumpty

I haven’t written in a while..I really haven’t felt up to it..at all. My life is just on this rollercoaster that some days (most days) I don’t feel like we will ever get to the end of this ride. I have never been in such a dark place filled with so much despair and pain in my whole entire life..I want it to end..I want the pain to go away and for all of this to be a terrible memory. If I hadn’t contemplated ending my own life several times in the last while, that would be a lie..I have..things have been so dark and frightening that I just want to say goodbye some days..I can’t do it..I don’t have that in me to say goodbye to everyone and I don’t want to be a statistic..when I do die, eventually..I want my cause of death to be known…I want my brain to be autopsied and I want Lyme disease to be recognized..it is in me..it will always be in my brain..it controls my thoughts, emotions and how I react and it has been very active lately.

I stopped antibiotics 8 days ago today..Azithromycin has a total life of about 17 days and it is the one that has been causing all of my issues. I have been panicking, hyperventilating (randomly for no reason), feeling like I can’t catch my breath (when I actually am breathing just fine) and waking up with nightmares, fear, racing heart and in a sweat. This started when I went on this drug about two months ago and it hasn’t let up yet. It scares me because a few months ago before we had a diagnosis, I had a resting heart rate of 145-150 and I wasn’t oxygenating properly all the time..it freaks me out that this could happen again and I could suffocate or die while everyone is away for the day..I don’t like being alone..I am not ready to be by myself yet. I am also terrified of the dark..the darkness outside..this is new-ish..I’m not sure when this started but especially when I am by myself, I don’t like the dark. To say I am scared is an understatement..I am terrified.

I’ve taken solace in playing the piano again..it helps relax my mind when I can’t get it to stop on its own…sometimes it can take a couple of hours before I am relaxed enough to lay down. I have been really exhausted lately, I don’t think my sleep is of excellent quality (I even take melatonin at night just to help)..I slept about 10 hours last night and I am bushed..I just don’t feel comfortable in my body right now..it is a scary place to be.

I had expectations of myself for when I came back here. I had pictured life a lot different from what it is..I thought I would be driving my car, cruising the city, going for coffee and meeting my friends..I had pictured a totally normal life..I was overly optimistic. I have watched my life slowly slip through my fingers as I have slowly (over a period of years) lost the ability to do anything…ride a bus, get groceries, go for coffee..my life feels empty right now..I don’t even like being in my own house by myself..a place where I should feel safe..I don’t. I can’t even walk my dogs..that is what I wanted to do when I got back here..take them out for a walk and I haven’t been able to do that. I still struggle with noise and over stimulation of my nervous system especially trying to follow a few conversations at once..basically sitting at a dinner table. Loud children really bother me and I had to take a two hour mental break and go sit in the dark just to let my body relax. My nervous system can only handle so much..I feel like I have taken about a hundred steps backwards since week 6 on IV meds. I am a lot better since I got back, the improvement is really slow..I think writing helps a lot..I need to get some of this mental and emotional trauma out of me…I have a lot..my nerves are fried and I am struggling..every day I cry, break down and sob because this feels like it won’t end.

I am very lucky that I have people who care enough to come and spend time with me when I am just feeling like total crap and can’t seem to handle the day. I had a respectable morning yesterday and then went grocery shopping and attempted TV..I think my brain was still recovering from the weekend and it turned into a pretty crappy day of hyperventilating, feeling short of breath (which I am sure is me feeding it with being overly aware of how I am breathing and attempting to take a deep breath..when I feel like I can’t, I try again and the cycle continues..then I actually do feel short of breath.), super agitation (tried everything to take the edge off..wish I could have had some baileys…), more crying, a warm bath, playing the piano..nothing really seemed to help. I think it is unlikely that this is all “panic”..a lot of it is my autonomic nervous system being attacked and the subsuquent die off of Borellia Burgdorferi that is dying off inside my head..plus that crappy antibiotic that I apparently am having a slight adverse reaction too..I won’t take it again..it makes me feel to agitated. However, some of it is definitely deep rooted anxiety from everything I have been through and yes, I should probably talk to someone about it…I want to feel a teensy bit better first.

My promise to the people who are supporting me through this is to stay alive and fight until the fight is easy..I am going to keep fighting..I am not giving up..but I need to make the fight tolerable because all of the meds are making it pretty hard on me..the way the infection has invaded my brain (is terrifying) and my worst symptoms are my herxheimer reactions (panic, fear, shortness of breath, agitation)..I need to make this a lot better for everyone (myself mostly). My immune system is in over drive, it is fighting hard, it is reacting for the first time in a long time to this mass infection that has taken over my body and it is over reacting and making me feel worse. I have been taking anti histamines to try and dull the response but I don’t think they are as effective when I take one everyday..I am trying to refrain from taking one today..we will see how it goes. I have stopped most of my meds and just started back on CBD oil today..I am hoping this will make a bit of a difference and help calm my nervous system down a little bit (I doubt it..but its worth a shot). I can’t get over how tired I am..ten hours of sleep (give or take) and I am ready for a nap..I don’t nap..I often find it to hard to lay down during the day and have only managed a nap once since I have been home and it was actually nerve wracking trying to lay down and get comfortable when your brain just seems to be overly focused on everything your body is doing. I have to try at some point today..I think I am just exhausted and my body isn’t resting enough..it needs rest to heal..I am not getting what I need.

One day all of my broken pieces will be back together..I hope that is soon..the wait seems endless.

-M-

Sunday

I wasn’t going to write anything today..I just really wasn’t up to it..I’m feeling kind of short of breath and I realize that this is probably me having a herx reaction but I was totally disappointed when it happened. I woke up this morning and for the first morning in a long time I was able to lie in bed and feel rather “normal”..it doesn’t usually last and once I got up I could feel that I wasn’t feeling “normal”. I was sure I was just having a herx which is common for anyone with Lyme (but we all herx differently..mine is shortness of breath or feeling like I can’t catch my breath) so I just went and sat in the tub for my fifteen minute epsom salt detox bath and then had a shower afterwards. I was hoping that it would pass but I think the stress of the whole situation is really adding up..being away from home and being sick and having to make the drive back to Edmonton on Thursday. The truth is, I am petrified of the drive..for many months I have been a virtual nightmare in cars..I get short of breath and start having what appears to be a panic attack..but its not..its a reaction to the stimulation and the environment and everything that my brain has to process but my brain hiccups because it can’t process everything…and then it all snowballs…so I am scared. I have been thinking about it a lot today and it has definitely played into how I feel..I am herxing..mildly..and I had a difficult time on the highway today which was a little unusual for me. Some days I get discouraged..I feel like this will never end and I will never have a life again..but I have lived more in the last few months (despite the sick days) then I have in a very long time. I am having more and more good days and less bad..and yes..after all of these years..I am finally healing. I have so much to work through..emotionally I have taken a big hit..my mind is not where it should be and I am struggling. I think it will be easier when I am back with my family and friends (even though I love my family here so much) and in my own house. I find myself in a constant state of disbelief and wondering why this happened to me and it doesn’t really matter because it happened..and now we can move forward slowly. One day I will be able to put this all behind me but for now I have to live in the present and even if I am having a not so good day, I know that there will be nice days ahead, there always are.

Lyme disease has also stolen my ability to remember things..like the things that I just wrote. It has taken the words that I used to find so easy and messed them around in my head like a big puzzle..I often struggle to figure out what to say or hesitate when I am speaking..its difficult to not be able to do what I used to do..It may come back, it may not..I can manage even if it doesn’t but I am hopeful that in the next few months we will see a lot more improvement to what has already gotten better.

I thought this would make me feel better just writing and trying to get my mind off of the way I feel but I still feel the way I feel and my mind is still overly focused on it. I have two appointments left with my doctor and then I am home free..off with three months of prescriptions and every three months we change medication just to keep this thing on its toes (I might have mentioned that but my memory is quite bad). The weather is a bit yucky today and I think that plays a part in how I feel too..I don’t particularly like cloudy days..they aren’t my favorite..especially when I am not well.

I am hoping and praying that I will do well on the trip to Kamloops on Thursday..I don’t deal well with heights and am not looking forward to being on the highway..I will probably have a blindfold on and earplugs in so I don’t have any clue where we are..I rarely sleep on road trips so that is probably out of the question. Roads are still scary to me..but not for the same reasons as they were before..they are scary because I know that sometimes the herxing is so bad and I can’t do anything about it..I am praying that I can have some peace of mind for the trip..Just a couple of days where my body can cooperate for a change..that is really all I want…a rest from this..when I get home I think that is when I will rest..I just need a rest from this disease..I am tired, my thoughts are jumbled and I just feel lousy today..I am optimistic that this will pass this evening as I had a relatively hiccup free night last night and fell asleep fairly easily which is sort of foreign to me these days. Hopefully tonight will be the same.

-M-

The Home Stretch

After last week and the frightening experience I had with LDI treatment, I decided that it was in my best interest to forgo more IV therapy..I was to agitated and I wasn’t catching a break..my herxing was lasting a long time and I was miserable..trying to find positivity in the day was becoming impossible as I wasn’t able to do much. I started on oral antibiotics on Thursday and I have been slowly picking up..slowly. I am hoping that I will pick up enough to head home by next Thursday as my hotel is already booked for the trip to Kamloops and I can’t cancel it!! I am having a rough patch right now but that is because my dog is at the vet having an allergic reaction to god knows what and I am here in BC thinking about her. My heart rate is really high and I am clearly stressed at the moment..I know she will be fine.

I had a nice trip out to Sidney today..fish and chips (sans gluten with yam fries) and a hot chocolate..plus a walk over to the James Bay Market and a decaf almond milk latte at Discovery Coffee on Menzies Street. Now I am sitting here, letting my body calm down and oil pulling (its good for you..try it..and I’ll do that for about an hour) and maybe some yoga.

I am scared..scared of the drive..obviously..the last few times I have driven any where long distance has been really bad for me so I am a little scared that I will herx so badly that I won’t be able to breathe (and when has that happened? Never..I can always breathe..it just feels like I can’t catch my breath) and I have antihistamines so they can help reverse a severe herx reaction anyways. It will be ok..I have promised to keep my eyes covered and my ears plugged so that I am not to aware of where we are and this will help my mind relax a little bit. I am very nervous when it comes to even write this down. So we won’t talk about it anymore..we will just live in the present and so far it isn’t that bad. Today has been fairly awesome..I did my usual this morning..herxed first thing when I got up..detoxed in the bath for fifteen minutes, took my morning meds and went to the Market (where I looked at stuff and did not purchase!). I haven’t slept well in the last couple of nights so I am hoping and praying that tonight I will have an amazing sleep and a good day tomorrow..as I am slowly picking up, I am hoping that for now, the worst of the days are behind me and that I will have some really good ones in the next week.

I am so excited to see my friends and family..when I think of going back to Alberta, I cry (that is a first)..I’ve been crying a lot..very tearful..I have been really stressed and I think the best place for me to be right now is in my own bed. Victoria will always always be my other home..I love this city so very much but I am ready to go back to cold Alberta..most of my people are there and I miss them. I haven’t seen them since July 11 and it has been so long..to long for me..

I am forever grateful that I was able to access the medical treatment I needed even though it was out of pocket expenses..if it wasn’t for this I wouldn’t be alive right now..and I know that..not saying that it would have necessarily killed me right away but I wasn’t going to suffer like that and I had made an agreement with myself that if I couldn’t get better then I was going to end it. I am getting better and it has been really really tough and I want to be alive but I didn’t want to live like I was three months ago..I knew what I had and I am so glad we are where we are today..this is the home stretch..although I won’t be near better when I return, I will be well on my way to recovery and I am so glad that I will finally have a life..I have been trying to get a life for over twenty years but it has been this disease that has prevented me from doing so…now I can…for that, I am truly grateful.

-M-

The last week

Well, it is the end of my ninth week on IV antibiotics. I started a new treatment on Wednesday (low dose immune therapy) and I had a horrible reaction to it. I herxed so horribly today (it takes a couple days for you to feel it) that I just couldn’t get any control..I felt so strange and weird and I though for sure that I was going to die. It started at 640am this morning and I was still herxing when I left my doctors office at 2pm. Thankfully there is a reversal for the therapy and it happens to be antihistamines..I couldn’t walk fast because I felt so out of breath so I walked slowly to the pharmacy with my dad and quickly popped an antihistamine. Within about three hours I started to feel better..my heart is still racing but I am actually feeling a little better. I had plans to go and get fresh bacon today but that didn’t happen!! Herxing always gets in the way…maybe not so much now as it did before but I have had a lousy four weeks and I am anxious about the trip back to Edmonton..can I handle being in a car that long? I have no idea..I sincerely hope so because I am not flying! I am waiting for my heart rate to drop as it has been racing for a few hours now and I find that a little scary since my heart rate was really really high in April when I got hit with the worst of the little Lymies..about 145 resting..ridiculous..It is slightly over 100 right now and hasnt dropped by much. I have stepped up the detoxification this week with some activated charcoal and some chlorella to help my body get rid of all of the dead stuff that is sitting around in my system (I am sure this will make me feel a lot better too) and that my liver is unable to push through..it seems to be struggling with the amount of die-off that I have had from the last few weeks of meds and I have added lots of lemon water and epsom salt baths to help my body get rid of all of the sludge. I am still optimistic that I will be well enough to return to Edmonton (uggh..right in time for winter) on September 28 as I miss everyone dearly and think that being around “my” people will help me in fighting and pull me out of the dark world of being depressed (as is so common with Lyme Disease).

Today I could really use a lot of hugs and people telling me that it is going to be ok. If I could have hugs I would feel so much better. I am sure tomorrow will be a much better day as I recover from my fun time with LDI..I am never doing that again!

-M_

Sunday begins…

Like I had said before, my memory is pretty foggy and its full of holes like swiss cheese (can’t eat that any more either..:( )..so I don’t really remember what I wrote without having to go back and read it all over again..I’m to busy installing video games from the eighties..bring me some joy!!

We switched back to clarithromycin yesterday evening, I just wasn’t getting any time where I wasn’t reacting to die off of the bacteria and it was becoming unbearable..I wasn’t living at all and was spending most of the time crying because I didn’t know how I was going to come through this. No pain no gain..I know..but this was to much..my body was not getting a break and I couldn’t flush out the toxic sludge in my lymphatic system fast enough. I tried Epsom salt baths, Burbur detox (about a million times that I had to order two more bottles) and I was pacing the floor trying to walk it out of my system (clearly that doesn’t work). I can’t describe in words how awful this disease is..It’s not an easy “take some antibiotics and you will be fixed”..there is no fix..there is hope of hitting remission at some point but there is no fix and the treatment isn’t pleasant..its heart wrenching to watch someone go through it and knowing that I am not the only Canadian that has been down this road and I certainly will not be the last person to be misdiagnosed and mistreated by the medical community..but I don’t want to see people suffer like I have for the last twenty years. I wasn’t living anymore..I was getting up in the morning and I was managing to be alive but that was it. There was little happiness left in me and I didn’t know what to do anymore..and that is how I felt this week..I wanted to throw in the towel..I wanted to give up.

This morning I woke up to my usual morning herx or having my magnesium level bottom out..at this point I can’t really tell anymore what it is but it makes me nervous all the same..my diaphragm would be so tight that I would actually have a hard time breathing (and I turned grey blue on a couple of occasions) and it turns out that my body was so depleted of magnesium that my diaphragm could not relax..It’s much better now that I am on a good supplement. Where was I..right..morning herx, lasted a couple hours and I ate some cereal (granola…yum) with some almond milk (since I have to be as dairy free as possible) and a few handfuls of potato chips (they were to sweet..). My appetite is big…its back and I eat A LOT. I lost my appetite completely in April and I just couldn’t eat so its nice to be able to actually LIKE food again..I love food..especially bacon..and my metabolism is back too…which is even nicer because I eat so much that I should be quite large at the moment and I’m not..fingers crossed that that never changes!

I am feeling better today..much better than I have been all week. I’m feeling more like myself and like I can actually handle this. Its going to be a long road to becoming fully functional again and I never ever imagined that this could hit me..not once in my life did it ever cross my mind..quite frankly I knew nothing about Lyme disease before I got really really sick..and now I don’t know enough. The time that I have at home is going to be spent researching and making sure that I keep on top of treatments, new methods and paying attention to all the signs that my body gives me. I didn’t imagine this as my life..but what my life was was very sad and it wasn’t getting better. I should be happy that I have an answer and I am..I have Chronic Lyme Disease and I will always have it..but it has opened my mind..there are things that I will be able to do now that I couldn’t before..now I have hope that the future is going to be bright..I will be able to make something of this for other people like me.

Butterflies…

I don’t think I had mentioned this before…When I got really sick I was desperate..either for it to end..or someone to take me away so I wouldn’t be in so much pain anymore or just to get well..I was sure it was going to end..and if I wasn’t here it would have. But..through the time I was diagnosed until now, every time I am really really super down and feeling really rough..there are butterflies..I see them everywhere and I know that things will be ok..even if they don’t feel ok, they will be. I have seen so many the last couple weeks..just the other day at my doctor’s office when I was feeling pretty awful and was talking to the one girl..she flipped her arm over and on her wrist there was a tattoo of a butterfly..its weird how they pop up at the weirdest times. I’m pretty sure I saw one downstairs the other day but it might have been a moth..whatever it had wings and looked butterfly like so it will do.

Today I am far less agitated..I am sitting in my chair and typing without taping my foot in total agitation mode..I have not taken anything for the agitation..that is a miracle in itself! I am sort of chilled out and drinking tea..as chilled out as I possibly get at the moment..which is a far cry from yesterday. I am also downloading old eighties video games that my cousins and I used to play as kids..you know..King’s Quest and all those other fun Sierra games that are no longer around…thats right..I have them.

One weekend when I was feeling well, my cousin and I stayed up way to late (just after midnight) and played until we had finished..it was pretty awesome..some of the best memories from being kids was playing those games…it was nice to feel like that again since most of the time I feel like a senior citizen with the mind of a teenager..Of course there will be more days when I feel less like a senior and more like a happy person. I’m happy today..I’m afraid of herxing badly but as everyone always tells me..it passes even if in that few hours I think I done for..I haven’t died yet and I surely won’t anytime soon.

This summer was supposed to be the summer of having a good time..but it wasn’t..it was self discovery and finally finding the answers that I have sought all of these years. I say that every summer..that this is going to be the best summer ever and I think the next few summers are going to be pretty spectacular. I can’t wait for camping trips (armed with a lint roller for pesky nymph ticks and a beekeeper suit to keep them off of me), drinks by the fire and good times with my friends and family. Summer is over here..for the first time since I was a kid, I am watching the leaves fall in a place that has always been home to me…it is my destiny that brought me back here to heal and every year when I came here there was something inside that told me I needed to stay and I would be pretty devastated when I was back on Alberta soil (I usually gave it the finger through the window on the airplane..)..well, this year I stayed..and it wasn’t because I wanted too but because if I didn’t I wouldn’t be visiting next year. I can only take my experience with Lyme disease and grow from it and I hope that this makes me a kinder and better human being (although I am pretty spectacular as it is). I have empathy for those dealing with invisible illnesses because you can’t tell that they are sick..just like myself, I look pretty healthy..but my body is an infectious disaster. I didn’t have empathy before..I assumed what a lot of people assume, “You aren’t pushing yourself” or “You aren’t trying to make things better”..and I am pushing so damn hard every single day. I walk slower than most people that are thirty years older than me now and my dogs will not be impressed…my joints are sore and inflammed and I have arthritis in both of my hands, but I am trying..I am trying to manage this and to make myself as well as possible and to keep pushing through this..keep fighting the system that has watched me suffer and has not every offered a hand to help pick me back up..I have to keep fighting for all of those people who are going to get sick and not know until they become who I was. I am a different person…I have changed and all of the change has been good.

I am listening to the seagulls in James Bay right now, it is damp and muggy outside but I can have the doors open and enjoy the peace..three months ago I couldn’t even be outside. There is so much progress and so much light..and one day I will look back on this and be astonished at how far I have come..I already am.

-M-