Hospitalisation August 2014

***TRIGGER WARNING***  Contains details of self harm and suicidal ideation.

I look back and see that my last post was in June… how can time go by so quickly when you virtually do nothing all day?

I am writing and sharing this post for and with my friends and fellow Lyme sufferers.  So there may be a few things that are repeated from earlier posts.  My reason for this is that this will be my main way of communicating with you all over the next few months as I plan to concentrate heavily on my recovery.  I have also found that at this stage in my illness, I am, at times getting overwhelmed and upset when I visit my Lyme support groups and read about the suffering that so many of us ‘Lymies’ are enduring.  I also feel inadequate that I am unable to join in and contribute more to the cause.  Geez, I am even jealous of people walking quickly or those laughing and living their lives as I once was able to.  Therefore, a break from social media is probably the best thing for me right now, however, I would still love to receive your facebook messages, texts and emails.  Please PM me if you don’t have my private info. So, PLEASE choose the option to follow this blog if you wish to receive email updates each time I post a new entry.  That way you will be kept up to date and I won’t have to repeat myself to each of you individually.  I’m sorry, but I just don’t have the energy to do so.

So to recap (and this is the short version), 6 years ago, we took a family trip to the US and within 6 months of our return, both my son (Matt) and I were displaying symptoms of MS.  We were both given MRIs which cleared us of this illness.  On top of my jerking and stumbling, my main symptoms were psychological and I had my first of many admissions to a private psych clinic.   My son however, displayed more of the debilitating physical pain and worsening MS symptoms.  After another MRI, he started to research and investigate what could possibly be causing him to be so unwell.  He stumbled across a list of Lyme symptoms and BINGO!!  He managed to see one of the few treating Doctors here in Perth and blood samples sent overseas returned a positive diagnosis for Lyme and quite a few co-infections.  He started treatment immediately and almost 2 years later, he is approx 80% better and still in the process of treatment to kill the remaining infections.  Meanwhile, I was in and out of psych hospitals where I had been diagnosed with Seratonin Syndrome, Major Agitated Depression and Generalised Anxiety Disorder.

I accepted this diagnosis, even though treatment didn’t seem to help. I have tried multiple types of anti-depressants, anti-psychotic meds, mood stabilisers and even two courses of ECT.  In the last 5 1/2 years, I have spent a total of one year in the psych clinic (hospital).  By December 2012, I experienced my first suicidal inclination and after finding me writing him a suicide note, my husband and I decided it was time for another admission.  This one would turn out to be the longest (4 months) and the most traumatic.  I must state here that I have a wonderful psychiatrist who has run every test known to man to try and find out what was wrong with me.  During this admission, he was still certain that I did in fact have MS and sent me for another MRI.  I was cleared of MS again, but more disturbingly, the MRI showed that I had a brain tumour almost 2cm in size.  Looking back at my first MRI, it was missed as it was so tiny and just starting to grow.  It is a meningioma which grows from the lining of the brain and is located at the top of my brain between my two frontal lobes.  I have been reassured by the fact that 90% of meningiomas are benign and slow growing.  Even so, my neurologist wants it removed ASAP before it starts to cause seizures etc but told me I was not mentally stable enough to handle such a big operation.  So for now, I am on watch and wait with a yearly MRI to monitor it’s growth.

After 4 months in hospital, no positive response to medications or ECT,  I am sent home as I am not making progress.  Maybe I will improve if I am in my home environment and continue to see my psychiatrist weekly.  I am also allocated a home nurse who visits weekly to monitor my condition and tries to encourage me to do the things that I no longer have the confidence to do after such a long hospital stay.  I have lost my confidence to drive, am agoraphobic, socially withdrawn, am extremely depressed and living with torturous anxiety.

Then the breakthrough!  About a month after my discharge, my psychiatrist mentions that he wants to run a test, “just to rule it out” and I ask what the test is for and he says Lyme disease!  I nearly fall off the chair.  We discuss that Matt is Lyme positive and organise a simple blood test through a local collection office and of course, the result is negative.  My psych is happy with this result, but by now, I am far more educated on Lyme and know that the blood test I had had is grossly  inadequate and unreliable.  As a family, we decide that I will see a Lyme Dr and send my blood overseas for testing as Matt had done.  DOUBLE BINGO!!  Not only do I return a positive for Lyme, I also have 3 co-infections!

The Lyme Dr I had seen was just starting out treating Lyme patients.  I had opted for this choice as my appointment to see Matt’s Lyme Dr (recognised as probably the leading treating Dr here in Perth) was months away.  My new Lyme Dr immediately placed me on full doses of two very strong anti-biotics, saying “we will hit it hard and fast.”  BIG MISTAKE! I herx so badly that my anxiety and depression intensify to unimaginable degrees and I plummet into the world of suicidal ideation, intense chronic fatigue and a world of hoplessness that I have never before experienced.  We decide to stop this treatment and I am recommended to a Lyme aware Naturopath… my life saver!!   I am placed on the Lyme diet of eliminating gluten, dairy and sugar from my diet.  I am also given supplements to boost my immune system and reduce inflammation.  I also undertake IV infusions to assist my body to detox, but these also induce a terrible herx reaction and I am forced to cease these treatments.  So I continue on the natural therapies and diet changes until my appointment with my new Lyme Dr comes about.

By this time, I have been virtually bed bound for months.  I have endured the terrifying experience of a seizure and I am still suicidal.  My new Lyme Dr places me on different anti-biotics which I start to build up slowly.  Again, the herx reaction is horrific and I am begging my husband to release me of my promise, so that I can euthenase myself and  be free of this torture.  I am feeling extremely guilty for being sick for so long.  Hubby is working 6-7 days a week, coming home and cooking and cleaning, maintaining the household finances and I can feel the pressure my illness has put upon him.  Every thing is my fault and I feel it would be much easier on my family if I were no longer in it.

Discussions with my psych and Lyme Dr result in the ceasing of anti-biotics, yet again.  I only remain on one Lyme medication called Plaquenil.  By now, I have also developed Health Anxiety (any small issue to do with my heath or medications send me into panic and I spiral out of control) and Obsessive Compulsive Disorder.  Mostly my OCD is to do with thoughts but I also have rituals which are most annoying and energy sapping.  I don’t have the cleaning type of OCD (not that I have the energy anyhow) or the fear of germs etc.  I must touch things a certain amount of times, walk around a post on the chosen side, place things in a certain way etc etc. Compulsions or something bad ‘might’ happen.  My brain is totally screwed and getting worse as time goes by.

We decide that I will change psych meds to an older type which is helpful for depression, anxiety and OCD.  It is our aim to gain me enough relief so that I can recommence Lyme treatment with minimal herx reactions.  IT IS MY LAST HOPE!  It takes 4 months to build me up slowly on this med, trying to keep the awful side effects to a minimum.  But every time I have a blood test to check my levels, they come back that I am not yet in the therapeutic level.  I am going through hell with this med change.  My mood is up and down to the extreme – sometimes daily or even hourly.  I am having bouts of neurological sobbing which can last from hours to weeks and I am having terrible MS symptoms again where I can barely walk or talk. I am so physically and mentally exhausted.  I am not thinking rationally and continue to blame myself for not being stronger, more active, a proper wife and mother or friend.  I then hit an all time low and to ‘punish’ myself, I inflict my first case of self-harm.  I grab a kitchen knife and slash at my forearm.  WHAT THE HELL AM I DOING???  Fortunately, I have chosen a blunt knife and only leave small scratches on my arm.  But, even so, it has eased my anxiety and released so many pent up feelings.  This doesn’t turn out to be a good week though, as it is the first anniversary of a much loved Lymie who released herself from her pain and to remember her and all the others lost to this revolting disease, Red Shoe Day is launched internationally.  Everyone in the Lyme community are posting pics on facebook of themselves wearing their red shoes, or at gatherings and organised get-togethers.  Me? I am lying in bed, jealous of those who are no longer with us and feeling extremely inadequate as I can barely manage to get up to go to the toilet.  I want out.  Again, I beg my husband to let me go and of course, again, his response is no.  He lies with me on our bed and after telling me that he couldn’t live without me, I then beg him to take his life with me, so that we are both gone and neither of us has to live without each other.  In this irrational spiral, I take no-one else in to consideration.  I am void of all feeling…. void of the impact this would have on our beloved son, parents, siblings family and friends.  It is then that my husband breaks down and I am snapped back into reality by the hurt I have caused to the love of my life.  We both know that he can’t continue to race home from work during the day to check on me and make sure that I am safe.  We both know that it has now reached a critical point and we decide that I need to be readmitted to hospital.  This is my worst nightmare after enduring 4 months in there last time.  I call my nurse, he visits immediately and I am admitted to hospital on July 29th, 2014.

It takes days for me to settle down in hospital.  By now, I have reached 200mg daily of the anti-depressant and when I stand, my blood pressure drops dramatically and I faint. We have no option but to reduce it and do so quickly. I undergo 10 med changes in 10 days and this takes its toll.  I have another seizure.  I am so dizzy, I walk with one hand on my head and the other on the wall.  I have to walk to the nurse’s station for my medications 5-6 times a day.  It is hell.  I am not sleeping properly, I am sobbing uncontrollably and rather than spending my days in bed, I must be up, showered and had breakfast by 9am so that I can attend activity group.  The worst part of my day is my mornings and I improve as the day goes on but by 7pm I am exhausted.  I must wait until 8pm for my night meds.  I have made up packets for each of my breakfast and lunch shakes.  I hide some of my natural supplements in my room so that I am not needing them to be administered by nursing staff.  I feel alone, tired and NO-ONE UNDERSTANDS OR EVEN KNOWS WHAT LYME DISEASE IS!! I am so frustrated and I feel the anger and blame towards myself building again.  Especially as I am in hospital for my son’s birthday. We always make a fuss at home and this year feels so cold and uncaring.

From my first appointment with my current Lyme Dr, he has told me that my depression and anxiety are caused by Bartonella and Babesia infections and the only way to cure these is with long term anti-biotics.  I am not sure that my psych has always agreed.  Some part of me still believes that he thinks he can ‘fix’ me using psych meds and of course ECT.  The problem has been that when I herx, my mental health deteriorates and I become suicidal.  I feel that I am in a no-win situation, now that our last plan of attack seems to have failed miserably, along with all the others.

Having spent the best part of the last 6 months in bed, I am now expected to be up and at it like everyone else – I wonder how many other patients have chronic fatigue.  How others who are deeply depressed and tired cope. Are they managing to rise and shine so early?  It doesn’t last long for me.  After a week or so, my body just can’t keep up.  I am waking at 8am, having breakfast, but I choose to wait until the sobbing stops each morning before I shower.  I try to make the second session of activity group, but the noise and hustle and bustle of talk, chairs scraping on the floor etc is too much for me to cope with.  I need to sit alongside a wall for support as I am so dizzy.  By week 3, I decide that instead of helping me, I am finding attending group is setting me back and I only attend one or two more sessions over the remainder of my stay.  They have an appeal running for Christmas, where patients make toys and they will be sent overseas to orphanages.  I knit my first ever teddy bear.  It is a success, so I knit in my room in peace and quiet.  I find that knitting helps reduce my ruminating thoughts and anxiety and is strangely relaxing, so on my weekend day leave, I stock up on supplies and maintain a habit of breakfast and meds at 8am, shower by 11am and then knit, knit, knit 🙂  It works for me!

On my third week in hospital, I have a scheduled appointment with my Lyme Dr.  I tell him that I am in the psych clinic again.  He says this is where he wants me, as the time has come to bite the bullet and begin back on anti-biotics to attack these bugs once and for all.  He is terrified of my herx reactions and wants me to start the treatment whilst I am an inpatient so that I can be monitored for my safety.  Due to my extreme drug sensitivity, I need to have my meds compounded into an even lower dose than normal and titrate slowly.  This should reduce herxing.  He also wants me to start a new herbal detox programme which is available by prescription only.  I am also to go back on to Aloe Vera juice 4 x daily. (I had stopped this since my admission as it needs refrigeration and would have to be administered by nursing staff.  I felt the less they had to administer the better.)  Again, I mentioned that my psych would like him to make contact so they could work together on my case.  He said he had tried but couldn’t be put through when my psych was with a patient.  I also mentioned to him that I had been seen by an Associate Professor Physician (they actually know each other) and he said that he was just in the process of replying to him about my case.  Things seemed to be moving in the right direction as my Lyme Dr promised to call the hospital that night to talk to my Psych.

So that night, my psych and rostered nurse come to talk to hubby and I about the appointment with my Lyme Dr.  I went through everything we discussed and mentioned that my Lyme Dr said the probability was that the Lyme was causing a minimum of 80% of my depression and anxiety and the remaining 20% was probably reactive depression to being sick for so long. The 80% would only respond to Lyme treatment and the 20% may respond to psych meds.  I then mentioned that my Lyme Dr would like me to start his treatment whilst I was in hospital and that apparently he had tried calling my Psych previously but couldn’t be put through because he was with a patient.  My Psych went off!!   Basically called my Lyme Dr a liar as he never refuses calls from other doctors, even if he is with a patient.  And as I was admitted under HIS care, my Lyme Dr needed to make contact so that it could be stated in writing exactly what medications I was to start on and the titration rate.  My psych apologised to me for raising his voice and airing his frustrations, but I again felt it was all my fault and the blame game against myself was nearly at boiling point.  My psych left saying that he had not had a call from my Lyme Dr that night and would be calling him tomorrow and spelling it out very clearly how things needed to work.  Legally, my psych was responsible for me during this admission and my Lyme Dr had to lift his game and come to the party.

They left and hubby went home, saying “well that went well”.  “Looks like we will be heading in the right direction now”.  My brain was saying “Fuck, I need these two people to work together and it’s one friggin phone call to help me! I’m not even worth a phone call? It’s all my fault, all my fault.”  I was distraught and started scratching at my forearm with all my might. Blood came to the surface and then I noticed the key in my locked drawer.  I gouged into my arm for I don’t know how long.  I was covered with scratches, blood and bruises.  But I felt better… I felt I had been punished and my anxiety relieved.  The bruising was deep and I could barely move my arm for two days, but I left no tell-tale scars. I showed my husband the next night and complained of the pain.  He said “well you won’t do that in a hurry again will you.”  And I haven’t.   The next few day’s events would make something inside of me ‘click’ that this wasn’t my fault. I am already hurting enough, why should I make myself hurt more?

Two days later, my Lyme Dr had faxed through instructions and a detailed history of my presenting symptoms, blood test results and his plan for my treatment.  He had also contacted the AP Physician who came to see me.  I have chronic neurological borreliosis and infected central nervous system accompanied by severe Bartonella and Babesia infections. He summed it up in one word: Nasty!  I now had three doctors who were working together, knowing my diagnosis and trying to help me. Now I just had to work on the nurses.  I emailed hubby, who printed off information brochures and these we gave to the nurses and one was kept on my file.  Nurses started to ask more questions – well most of them.  There are still those that only go to work to get paid and spend most of their time checking their mobile phones.  I don’t think anything will ever get through to them unless someone they love gets Lyme disease.

After one month and two increases in my new Lyme med (without any herxing), I discharged.  I wrote a loving thank you card to the nursing staff and also begged them to google neuroborreliosis and bartonella depression.  As I explained to them when I left, if you had a patient with schizophrenia and you were unsure of the symptoms, I am sure you would research that.  Please, grant me 5-10 minutes of your time and do the same for me.  I doubt that I will be their last Lyme patient and as I have been told that the next 6 months could be pretty rough going, there was a good chance I may end up back in hospital for a week or two at a time to see me through critical stages.  It would be nice if they were more informed next time 🙂

I have been home for just over a week and I have had my ups and downs, but nothing compared to how I was prior to my admission.  I still have bouts of neurological sobbing – I can’t control these, I don’t even know why I am crying.  These episodes are very different from psychological crying which is in response to an emotion or event.  I am still trying to maintain breakfast between 8-9am and showering and getting dressed early.  I am managing on most days to do a few chores early on then I sit on my bed and knit when I feel my body is telling me to rest.  I have progressed on to cute rabbits and koalas and my next project is a piglet.  I have until October to get the toys back to the hospital for despatch to the orphanage.

During my stay, I was started on a new tablet called Modafinil. It is a stimulant med given to shift workers and people with sleep apnoea (which I have).  It has really taken the edge off the chronic fatigue.  My Lyme Dr has never tried anyone on it before, but I will be filling him in when I see him in October as I think it is very beneficial.  Well at least to me.

I have found it hard to connect with a lot of other Lymies as my main symptoms are psychological. I live with mental pain every day and only have bad jerking, dizziness, instability, stuttering etc when I have, what I call a Lyme flare or Lyme crash.  Most lymies I know, live with chronic daily pain and the psychological symptoms come as a result of that or due to treatment.  I have found it most interesting that this time round, I have experienced knee pain on this new med.  I guess it is a good thing – letting me know that the bugs are being killed off.

To my Lyme friends: please don’t hesitate to contact me if you want to ask any questions.  I won’t give out the name of my Psych as I have done that previously and he is not taking new patients.  He also feels that he is not knowledgeable enough on Lyme disease as yet and is trying to learn as much about it as he can through reading books and information I have provided and continue to provide him with.

To my family and friends:  Thank you for wanting to understand what is happening to me. I know that this is confronting reading, but I speak from the heart and tell it as it is.  If you choose to follow this blog and maintain contact and support, I would be most grateful.  A little text message or PM goes a long way 🙂  I am not an axe murderer or lunatic, I am still Terri deep inside.  Remember me as I used to be: happy, energetic, busy, always willing to lend a hand or help a friend.  I will get back to being that person, it is just going to take a while…maybe a year or two even.  Please know that you can’t catch this from me (unless we have sex haha).  Please don’t judge me.  I would like to think that none of the people I care about would judge me…. I got bitten by a tick, simple as that and it has turned my life upside down.  If you visit and I walk or talk funny, laugh with me or hug me as I cry.  Most importantly, understand that I am probably going to get a lot worse before I get better.  Support and words of encouragement or doing my ironing mean a lot to me! ;P

To all who made it through this epic post to this point:  THANK YOU!!! I wish you all peace, joy and good health.

Terri xoxo

av99

 

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23 Comments (+add yours?)

  1. Suzanne dalziel
    Sep 08, 2014 @ 16:05:41

    That was a great read Terri, thank you ,it must be hard for you to write all of this that is happening to you, as I don’t know your address or mobile number I cannot visit or txt you, but do think of you so keep on with this fighting as I know the person you once were and am positive you will get back to being you even if it does take some time ♥ ♥ ♥

    Reply

  2. Karen Cox
    Sep 08, 2014 @ 16:15:53

    Thank you for sending me your blog. I will be with you every step of the way. It’s really interesting to read about it and I find it very helpful to try to understand how I can possibly help you. I’m sorry I’m not much help at the moment though.

    I’m with you Hun for the long run xxxx

    Sent from my iPad

    Reply

  3. Laurel
    Sep 08, 2014 @ 16:29:37

    Terri, I am crying reading your blog. My husband has neurological Lyme and reading your story is like reliving what he went through. Your stories are remarkably similar. I’d would just like to tell you to please persevere with your treatment. My hubby was exactly like you, suicide attempts x 2, in and out of psych clinics, unable to walk/talk at times and the feeling of utter hopelessness. I gave him CPR and revived him after his last suicide attempt, even after that i wasnt sure i had done the right thing as i knew he didnt want to be here suffering. He has now completed nearly 2 years of Lyme treatment and he has got to a stage he is now looking for work again. He is active and getting back to living again, there is light at the end of the tunnel. You just have to keep going, it will happen for you.

    Reply

    • Terri Ford
      Sep 08, 2014 @ 16:41:58

      Thank you Laurel. I am so happy for your hubby! And yes, that will be me one day 🙂 I have tears because you have your hubby back and happiness and can live again. What a wonderful, happy ending for you both. xoxo

      Reply

  4. Vanessa Sutton
    Sep 08, 2014 @ 16:32:56

    Hi Terri,

    Thank you for being so incredibly brave to share your story. It and YOU are inspiring. Actually it is beyond inspiring.

    I know what it’s like to fight the depression, anxiety and chronic fatigue side of things for such a long time and what the hospital admissions are like so please know you are not alone and you can talk to me anytime. It was a pleasure to meet you and you have remained my friend since and always will be therefore I am here if you need. You don’t need to walk this path alone. Please do let me know if there is anything I can do to help.

    There is hope. And you will get there. Believe in yourself, like I believe in you. I believe you will beat this and be able to lead a happy, normal life once again because you are strong, a very strong woman indeed. I’ve seen it and it comes through in this post. I will definitely be following and praying for you m’dear.

    Ness xxx ❤

    Reply

    • Terri Ford
      Sep 08, 2014 @ 16:46:23

      Aww Ness, I know you understand hunni. Thank you for your kind words. I am here if you ever need me too. I went in to hospital without hope and came out with some, that in itself made it worthwhile. I hope things pick up for you also. You are a strong warrior too. Love and squishes xoxo

      Reply

  5. Lena Martin
    Sep 08, 2014 @ 17:37:07

    Terri, Just want you to know I love you & wish there was something I could do to ease what you are going thru. Stay strong for I truely do believe you will beat this, especially now that your 2 doctors are working together. Want to come & visit, have a little gift for you & maybe Auntie Lena can take you out shopping or do some cleaning for you. I know you’ve been thru hell & please don’t blame yourself for any of this. Life can be a bitch at times, but your one tough girl & I know you can beat it. See you soon sweetie, let me know when it will suit you. Love youxxxxxxxx

    Reply

    • Terri Ford
      Sep 08, 2014 @ 18:00:19

      Thanks Aunty Lene. I could really do with one of your hugs right now. I didn’t realise that my writing this and the beautiful responses and encouragement would be so emotional for me. Just give me a buzz when you are free. I don’t go out much lol xoxoxo

      Reply

  6. Danielle
    Sep 08, 2014 @ 17:47:52

    Sweetie it must have taken a lot of time & energy for you to write this blog, my heart goes out to you & your husband and family. Depression is such a terribly cruel thing to deal with for those that suffer with it and for those around them as well. I wouldn’t wish it on anyone.
    You truly are amazing to have come this far and you are stronger than you realise! You will get there and be well and happy again, I just know it.
    Keep up the fight for your health honey, you are so very worth it and one day you will help out others who are on the same path behind you.
    I am following your blog and including you in my prayers and thoughts.
    Take care of you
    Love & Light
    Dani
    xOxOxOx

    Reply

    • Terri Ford
      Sep 08, 2014 @ 18:04:26

      Oh Dani, thank you so much. Yes, it has been a massive day emotionally, but something I needed to do. I am struggling to keep everyone updated and feel this will be the best way. I wish for you happiness and contentment as I know things have been hard for you lately also. You are strong and beautiful Dani, don’t ever doubt yourself. Much love xoxo

      Reply

  7. Catherine Smith
    Sep 08, 2014 @ 18:18:55

    Hello Terri sorry to hear what you have been through. Have you had your gene mutation/methylation and prrolyura checked. You need to find a doctor who is experienced in this. I’m very blessed to have Dr Christabella Yeoh treating my gene mutation/ methylation. Since starting my methylation treatment it has helped my physiological issues. Blessings Catherine Smith

    Reply

    • Terri Ford
      Sep 08, 2014 @ 18:24:04

      Hi Catherine. I have and tested negative for MTHFR and Prrolyura. But it is something that I think I need to get checked out again and will discuss with my Lyme Dr next visit as too many people have now suggested this to me. xxx

      Reply

  8. Scott
    Sep 10, 2014 @ 17:20:06

    Hi Terri, thank you so much for this post, I read every word of it 🙂 You are an inspiration to have made it through such trauma. I know it is still tough going, but you sound like you’ve got a lot of strength and fight in you! Never EVER blame yourself for this fucked up situation you’re in, it could happen to anyone, and I’m sure most people wouldn’t be handling it anywhere near as well as you are!

    I have lyme and bartonella too. And like you, I have had SEVERE psychological symptoms, mostly severe anxiety/panic. I will just tell you my story as briefly as possible:

    I was bitten by a tick in Mullumbimby doing yard work in August 2012. A few days after removing the tick I had flu-like symptoms, thought nothing of it. Then severe insomnia started, and joint pain, anxiety, dizziness, drenching night sweats, diarrhoea, back pain, tingling fingers, rage attacks, OCD, and a few other things that I can’t remember at the moment. So I did some googling of my symptoms and Lyme disease kept popping up (never heard of lyme at this point). After a few more days of research into other possibilities, it became clear that all the evidence pointed to lyme, and I knew that if antibiotics helped relieve my symptoms that would be the clincher. So I went to a GP, presented all the evidence, and thought “open and shut case. He’ll give me some doxycycline and I’ll come good in a week or so”. Boy was I wrong! He was immediately hostile as soon as I mentioned lyme (WTF!), and refused to give me doxy, even a small dose to see if it relieved symptoms. He didn’t even ask if I’d been out of the country to see if I could have contracted it overseas. He just said there was no possible way it was lyme. Stupid old fuck (sorry, haha).

    Then I went to another GP, again presenting all the evidence. He said it was Queensland tick typhus (even though my symptom profile was inconsistent with this), and gave me a week or two of doxy. After a few days I made remarkable improvements, and was back to 100%! Even if it wasn’t lyme, I knew it was some sort of bacterial infection due to the effectiveness of antibiotics. At this point I will just mention that I have a degree in Psychological Science and am well aware of the placebo effect, I am also a staunch proponent of evidence based medicine. I know the mind is a powerful thing, but if someone said this was all in my head, that would be like telling a cancer patient that that tumour is just a figment of their imagination.

    My script for doxy ran out, and within a few days, all the same symptoms returned. This was when I decided it was time to go see someone who knew what the hell lyme was. So I called a LLMD, and after a thorough background briefing, he knew that my symptoms were consistent with Lyme and bartonella. So he sent some scripts for specific antibiotics until I could see him in person. Again, within a few days/week of going on antibiotics, all my symptoms gradually cleared up. I stayed on this combo for three months, but all symptoms returned (some even worse) after 4 months of coming off the meds.

    Then I did the same combo for 6 months, symptoms gradually eased again while on this, but returned after 5 days of coming off. So I went back on the antibiotics again. Now I knew I had to take this seriously, so I did a radical diet change to try and get as healthy as possible. I cut out a lot of fats, sugars, processed foods, red meat, even fruit. But this was a huge shock to my system and I started throwing up for five days straight. I couldn’t keep anything down, even anti-nausia tablets they give to cancer patients didn’t help. I lost nearly 10kgs in a week. After about three days of vomiting, my anxiety started to get worse, it was either the bart coming back, the lack of nutrients in my system, or something else, or a combination of factors. On the fifth day my anxiety had turned to constant state of panic and terror. It was absolutely unbearable and inescapable. I knew I couldn’t go to the hospital because they wouldn’t know anything about lyme and would probably put me in a locked ward. I thought the antibiotics had stopped working and since these were the only ones that I thought existed that were able to treat bart, I saw no other choice but to end my life.

    I took a few sheets of medications that I knew were dangerous to the heart when combined, I wanted to have a heart attack, anything to make this severe terror stop. My heart was going crazy, and it felt like a heart attack was imminent, but it was still taking too long. So I got out of bed (this was about 10pm), went down the road to a 3 storey house and was going to jump off the roof head first to break my neck. I jumped the wall/fence, but the homeowner was there putting out garbage. I was so drugged up by this stage that I said “my ball got stuck on your roof”, and tried to push past him. Everything was going black, and I couldn’t get past so I climbed back up the wall/fence and I think I was going to try and kill myself from there, a 2m jump. I blacked out before I hit the ground.

    I woke up a day or two later in the hospital. I broke my collarbone, seven ribs, my pelvis in two places, my tailbone, and punctured a lung. I felt surprisingly good. Maybe they gave me IV nutrients that I had been lacking, and I had also taken a heap of Avelox (part of the suicide cocktail), an antibiotic with powerful bartonella killing power. I spent about a week in the hospital, and had no return of symptoms, since I had my family bring my antibiotics with them. I just want to add that I felt, and still feel, absolutely horrible about what I put my family through, it makes me cry just thinking about it.

    After some difficult rehabilitation in hospital, I returned home and was bed bound until my pelvis healed. This didn’t phase me, because I felt mentally good, and didn’t have the uncontrollable suicidality I had had before. This was until the Avelox (the antibiotic keeping the bartonella at bay) started having side effects, so I had to go off it and back onto the old drug I had been on previously for bart (I only started Avelox when I had the huge dose with the suicide cocktail). But this drug (rifampicin), wasn’t working anymore, the infection had developed resistance. The horrendous suicidal anxiety/panic was coming back, along with other symptoms like insomnia, diarrhoea and joint pain. I thought my options had truly run out now. So one morning, I packed some things and took my brothers car. I went to Bunnings, bought a generator and some fuel and I was going to just drive for a few days and try increasing some of my antibiotics, and if that didn’t work I would gas myself. I was so anxious and afraid and depressed and I didn’t want to do it alone but I knew my family wouldn’t just sit by my side while I killed myself. I called my sister and brother just in case it was the last time I could talk to my family. I begged them not to call the police, but I didn’t give any details of my plans. In the meantime, my brothers had found my suicide note I left on the computer just in case I did go through with it. They called the police then called me so they could trace my phone.

    All these police cars and bikes arrived, and surrounded my car. That absolutely terrified me. I thought they would lock me in a psych ward, and I would be trapped with this SEVERE TERROR and no way to end it. It would be like torture and no one would understand. I took an extra rifampicin and they got me out of the car, asked me a heap of questions, locked me in the back of the police car, and drove me to the hospital. I tried to remain as composed as possible so they wouldn’t put me in the psych ward. This was all a waking nightmare with no escape, I mean how the fuck do you “fight or flight” a severe psychological disorder caused by a bacterial infection??

    In the hospital two separate psychiatrists saw me and said “you don’t have lyme, you couldn’t possibly have it!”, and they had never heard of bartonella before. I still managed to remain calm so was let out after a few hours.

    The next few months were hell. I kept taking my increased dose of rifampicin (plus the usual doxycycline & plaquenil). I told my family everything, everything was out in the open, but I have never told them this: I was constantly suicidal (though slightly less so than when I was at my worst), I was always planning a “way out”, a way to make the pain stop. Because someone was always watching me, I was thinking of hanging myself by my belt in the bathroom, or sneaking out and taking a heap of drugs and suffocating myself with a plastic bag in a spot I had picked out behind a fence in the park, or when I went for a drive with my brother I was thinking of quickly jumping out of the car and into the river or a creek, or something… that’s how desperate I was, suicide was always on my mind. I know how fucked up and selfish it was and some people would say “how could you do that to your family?!” But that’s how horrible the whole situation was, anyone with these symptoms would be suicidal, and I seriously thought I could convince my family to let me do it because I was suffering so much and I thought that if they loved me, they would let me die. At the time, this thinking makes complete sense. In hindsight it is unthinkable. It just shows how much this disease destroys the sufferer and their family.

    After months of this I started to have little spells of NOT feeling suicidal. Then the spells got longer. My pains and anxiety started to clear. I kept taking my medication and kept feeling better and better. Now it is today, and I still have a bit of joint pain, back pain, blurry vision, insomnia, and little bouts of anxiety/depression, but I have had some days of feeling mentally 100% 🙂 I have hope again. I no longer feel like suicide is the only option. I have since discovered, through my own research, that there are other drug options that people have treated bartonella with successfully.

    If I am dead then there is no hope, if I am alive then there is still a chance.

    Please exhaust every option Terri, and try everything, because you never know when something is finally going to start working. It is a slow painful process, I know, but everything you do all adds up. Don’t give up. You are fucking stronger than you know, but everyone around you knows it. No one is disappointed in you, and no one blames you for anything. Thinking like that is just wasted energy.

    I wish you all the best, and I just know you will look back one day and think about how far you’ve come, and how you thought you would never get there.

    xx

    p.s. sorry for the looooong comment 🙂

    Reply

    • Terri Ford
      Sep 11, 2014 @ 09:26:12

      Hey Scott. Firstly, I am so happy that you are having days of peace and are well on the road to recovery. I have tears reading your story. I totally understand how you were feeling. “If they love me, they will let me go”, oh boy, how many times have I thought exactly the same thing. I will say that prior to my admission, I had no hope. When I discharged, I had a little and this is growing as I have had beautiful people like you take the time to tell me their stories of recovery and I know I will come back and read your story over again and again when I feel defeated again. So far, I have had minimal herxing as I increase my new med. I am sobbing less also but am feeling the nausea and headaches. Although extremely unpleasant, I am persevering and managing as best I can. I am allowing myself more time-out when I feel I need it. I suppose in truth, I am being kinder to myself. I hope I hear from you again when all the residual ailments have gone and you are bouncing around, filled with happiness and living every moment of life to the full. You are a truly brave warrior and I am so glad you are still with us. Terri xoxo

      Reply

  9. Claire Wellington
    Sep 10, 2014 @ 17:47:50

    My Dear Terri
    I so wish I had a magic wand or some magic powers , or some powerful words of wisdom of help for you, but I do not, I am sorry to say
    All I have to offer is my friendship and be able to let you know that so many of us care, you are not alone.
    When you are having one of your bad days, and you are feeling that you can no longer go on. Just look over your shoulder and see for yourself, just how far you have come. You still may not be where you want to be but you sure are closer to being there than when you first started.
    After looking over your shoulder Terri, then look to your side of you, notice how many people there are walking this journey of life with you (not for you,but with you), You have been truly blessed with so many wonderful people, caring family and friends and a fabulous, loving and supportive husband and son
    You have touched their lives in so many ways and have helped them along their journey of life as well, most likely with out even knowing in what you may have played a part in helping them
    I am sure this is what we are all here for,. Nothing big and fancy . Just simple there to help each other on our journey of life, in what ever way we can. No judgement, no blame. We are all doing the best we can with what ever it is we have or have not
    Link arms with all that are around you,on this journey of yours, feel their strength, power, courage and what ever else you may need to help you.
    Sending you big hugs right now from me to you and I send you (please make sure you use these,I give them to you as a present) ………..
    1. Smile……. 1. Hug. ………. 1. Belly Laugh……… 1. Wink.
    Share them around my friend, there are plenty to share. Enjoy. =D =D =D

    Reply

  10. Rebecca Vary
    Sep 13, 2014 @ 02:01:55

    Terri you write so beautifully. The first time I met you, when we were both connected to IV drips, the only comfort I could offer was the words “it won’t always be like this”. I still believe that and believe despite the rocky road you are on, that progress is being made. You are one hell of a brave and strong woman to put the truth of this terrible disease on “paper”. I wish you luck and send you love – Rebecca.

    Reply

    • Terri Ford
      Sep 13, 2014 @ 13:26:36

      Thanks Rebecca. You were so reassuring to me and one of the first fellow lymies I met. I can’t wait until we are both well and can catch up for a coffee and laugh. And then I can also assist you more in helping the cause. I appreciate all that you do. Terri xoxo

      Reply

  11. Shirley Adams
    Sep 13, 2014 @ 08:34:43

    Incredible story Terri and reading this made me realise even more than before just how much you have suffered. Do whatever it takes to make yourself well. I will always be here for you and will certainly keep in touch. Please tell Gary if he ever feels the need to talk or just go out and have a drink, Patrick and I are only a phone call away. As you know, Irishmen love a drink! I will be keeping in touch. We leave for Vic on September 27 so if I don’t see you before we go, will see you when we get back. Please don’t disconnect altogether. Love you always Shirley xxx

    Reply

  12. Jensy
    Sep 14, 2014 @ 14:10:22

    tough time, hang in there – I believe you can recover now your diagnois is sorted

    Reply

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