My Fight For Remission Continues…

It has been 3 months since I arrived in California and began round 2 of magic medicine. I can’t believe I am still here or how quickly time has gone! I had originally booked a return flight for the middle of May, but as time crept up, reality kicked in… I still needed more medicine and this meant time. I was hit with the dilemma of how can I afford to stay in the USA for longer? Fundraising has slowed right down, the hotel was so expensive and I just didn’t have the funds for this as a long term option. The decision to return to the UK may have seemed more affordable, but for treatment this would be detrimental. Leaving California would mean pulling out my PICC line and therefore no more intravenous antibiotics. My infections have progressed to the difficult stages due to the length of time it took for an initial diagnosis and it seems I really don’t respond to the oral medication and therefore this wasn’t really proving an effective option for me. Bearing all this in mind its not surprising I had a full on week of worry and tears trying to work through options and scenarios in my head. Financial and geographical limitations were putting up barriers and the additional stress wasn’t great for my body.  I was then super lucky to find an offer of a room rental in someones house. It came just as I was loosing hope and I grabbed the opportunity with both hands. A kitchen I could finally cook in, this seemed like luxury after creating all sorts of interesting dishes in my hotel room, not easy with dietary restrictions and lack facilities! I also craved that home environment, a sense of normality in the midst of a situation which really didn’t seem all that normal! After all I have travelled over 5,000 miles by myself to get medical help, this didn’t shout normal and was definitley never on my 5 year plan!

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I was soon packed up and moved into my new temporary home… I seemed to have double the luggage I arrived with, medicine and IV supplies galore, kilo bags of epsom salts and not to forget the IV pole! I quickly adjusted into the new environment and know how ever hard it was to still be away from home I had to jeep focused, positive and motivated. No one ever said fighting for remission was going to be an easy one, but its definitely a fight I am willing to take a good shot at.

IV Meds in the hammock! Making the most of a 'better' day & the beautiful californian climate.

IV Meds in the hammock! Making the most of a ‘better’ day & the beautiful californian climate.

My medicine has been changed up on a regular basis since I have been here, research suggests that the infections really respond to this pulsing method long term. Un-like other illness’, Lyme is not text book and there really isn’t a ‘one fits all’ protocol. You can be infected with an array of infections from a tick and not only does this vary  from person to person, but also how the body and immune system cope and responds to these bacteria vary significantly. I often have people ask me ‘what medicine do you take, I have a friend with Lyme and she need to start medication?’. The thing is there is no simple answer, one must consult a Lyme literate doctor, have various lab tests done and be treated based on these results and also on a clinical level too based on current symptoms. My symptoms can change on an hourly basis, let alone a daily basis! I may wake with a crushing headache and pains in my feet, then an hour later I may feel really alert but shaking and by the end of the day I might be hugging the porcelain bowl! Its the most unpredicable situation to be in and it doesn’t make it easy to make any plans! I never really know if it will be a good hour or one where I hit foetal position and just rock! I can look so well from the outside but inside I often feel like I am breaking internally in so many different ways… like my body has been hijacked and there really is a monster inside me!  This for me is particularly frustrating, I can’t see or always understand what is going on inside MY body and yet I have to almost accept that ‘it is what it is’ and just deal with it. I am control freak and it makes me feel ridiculously out of control!

The main intravenous antibiotic medication I have been working with this past few months is Rocephin/Ceftriaxone, Azithromycin and Metronidazole/Flagyl. All of which focus on fighting the different persistent bacterial infections which I have. These are administered sometimes multiple times a day and have multiple side effects and interactions. Its often one medication for one problem and then another to reduce or eliminate the side effects!

The other IV medications I take are Phosphatidylcholine, Glutathione, Colloidal Silver and Myers. The latter is a  nutritional cocktail of high dose Vitamin C, various B Vitamins, Calcium, Magnesium etc. All of which have clear roles in detox,  supporting my immune system and helping me bite back against Lyme and the multiple co-infections.

I also take a daily concoction of probiotics, herbal tablets and tinctures which are a natural and vital part of my protocol. With all these pills, potions and drips it soon fills my day as you can imagine! In addition to medication I am also using food as another avenue of healing. I am currently gluten free, sugar free, dairy free and and following the Low Fodmap Diet. This eliminates high fodmap foods which are poorly absorbed into the small intestine and this helps reduce the abdominal pain, bloating, and bowel problems that have been caused by the infections and medicaitons . By eliminating these short-chain carbohydrates such as Lactose and Sucrose, it helps to eradicate this process of malabsorption and in addition to the other dietary restrictions I am hoping long term this will help to re-program and eventually heal my gut.

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I am really careful about keeping a log of all my medication and symptoms as this allows both the doctor and I to have a more accurate view on how things are going, what may be helping and in some instances what could be making things worse. You really begin to see patterns over time and get a much a clear insight into the flare-ups and also the better days too. I have a notebook which I have used to log every day of treatment since all this began. I recommend this for anyone juggling a difficult health problem and a lot of medication, especially if your brain has become a little more on the foggier side!

The trusty notebook... an insight into Lyme life!

The trusty notebook… an insight into Lyme life!

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On high-alert and feeling toxic! September – November 2014

In my last blog post, I left you with an update as far as August. Things were going fairly well and I was definitely feeling and seeing progress across my body, brain and general well being. This was obviously too good to be true and before I knew it, Wham! I seemed to hit another bump in the long lyme road, and it was for sure another uncomfortable ride!

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So you may be thinking what caused this downturn? Well, although we have no concrete evidence, we think the culprit was a vaccine. I was given this as part of some immunology investigations. Having vaccines with Lyme Disease is without doubt a questionable task, but these tests were important as I needed to see if I had inherited my Mums rare and complex Primary Immune Deficiency, Hypogammaglobulinemia. This causes an abnormally low level of immunoglobulins, the antibodies that help fight infection. Research has shown this can be ‘congenital’, present at birth or ‘acquired’, developed later on in life. It is vital that we determine wether or not I have this as it could effect my chances of recovery from Lyme, and it could mean I have to have regular intravenous immunoglobulins in order to support my bodies immune system.

Ok, so back to the vaccine…Approximately 4 hours after this, I felt very nauseous and lethargic. I headed straight for bed in an attempt to sleep this off and when I woke an hour later, I was experiencing excruciating pain in my shoulder where I had had the injection. Although it is common for pain after any injection, it was my whole shoulder and upper arm not just the insertion site. By early evening I was in so much pain, in floods of tears and unable to move my arm at all. The level of discomfort was off the scale, and I was having to physically support the weight of my arm even in resting position as  the general weight of my arm felt unbearable. I headed straight to my GP where my arm was put in a sling and I was prescribed stronger painkillers and anti-emetics. This was a ‘dead’ vaccine so I really didn’t expect any reaction at all, let alone this!

Within 3-4 days the pain had subsided considerably but I continued to feel totally wiped out, it was almost like I had regressed 6 months. The physical symptoms from Lyme and the Co-infections I was fighting had all seemed to creep back to a much more aggressive level. My night sweats were back with a vengeance, I had air hunger, heart palpitations and the headaches were constant. My adrenal gland function seemed to be playing up too. This can be a common occurence with chronic infection. From having this problem earlier on in the year,  I have become aware of certain symptoms which arise when this is happening. I notice I am a lot more alert in the evening when I should be winding down. I get a real sense of restlessness and almost an internal jitter. My sleep feels completely not restorative and I often feel like a zombie until about lunch time, not to mention the brain fog! My insomnia also increases and my appetite too. I seem to loose weight although noticeably eating more! You may be aware of the ‘fight or flight’ response, which is a process of the sympathetic nervous system, our bodies reaction to the stress it is under. Its like the body goes into high-alert and the hormones of the adrenals contribute to this process.

So with all this going on in my body I was advised by my Lyme doctor to briefly stop my antibiotics while my body had a chance to get to grips with the latest episode! I stayed off these for almost two weeks and then introduced them again one at a time. Unfortunately it was not before long and I was feeling worse again, I was now vomiting, having chest pains and can only describe the feeling as hitting a brick wall. It then became apparent that my liver had also become congested, so I had no choice but to stop all antibiotics, again. I was toxic, literally and it was too dangerous to continue to load my body with medication especially as my faulty detox genes meant I was not able to rid of any of the die off I was experiencing from the antibiotics. I got myself into full on detox mode. I increased my intravenous Vitamin C and Glutathione, had 30 minute epsom salt baths daily, drank copious amounts of lemon water and had regular castor oil liver cleanses. I also continued to take the herbal tinctures and tablets such as Itires, Apo-Hepat and Milk Thistle.

I had to stay off all medications until mid November and I found this really disheartening. All I know is that to rid my body of all these infections I have to preserver with long term antibiotic treatment, so to be told your body is not tolerating it is simply frustrating. With that aside, it wasn’t long before I got my head back in the zone and reminded myself that I needed to stay mentally strong, that this was just a blip and before long I would be back on track. It is not easy trying to be positive day in day out and don’t get me wrong I have my moments! I cry, I feel angry and I ask that rhetorical question ‘Why Me?’ Surely though I wouldn’t be human if I didn’t have these moments and thoughts every now and then. Being continuously ill is not easy. It also didn’t help that my 30th birthday was approaching! I always had expectations and plans for where I would be in life when I turned 30. What I had hoped to have achieved and what my future plans where. Well obviously getting bitten by a tick threw a huge spanner in the works and I could no longer follow a plan. Right now my plan is just to get through each day, just one at a time and do my best to do so with a positive attitude. I always remind myself it could be worse, and it could. I have a roof over my head, a supportive network of family and friends, and a doctor who is trying everything to fix me. At least I have a chance to get better. I am lucky I am still alive and yes, I may be in pain for the majority of that time, but I keep the hope that this won’t be the case forever.

“If you keep hope alive, it will keep you alive” 

Pills, Potions & ‘Other’ Therapies…

Over the past two weeks, I have been increasing both the amount and strength of my current herbal supplements, as well as introducing a few new ones. One of which is a liquid form of ‘Liposomal Glutathione’. The health benefits to this pretty nasty tasting liquid are endless. Not only is it recognised for its anti-inflammatory properties, but it has also been named the ‘master antioxidant’. It is essential in helping the immune system to function at a higher level. My immune system has become massively suppressed since becoming ill, so supplements such as this are crucial in protecting my bodies cells. Another supplement I have started is called ‘Lightning Pearls’, and yes totally loving the name! Feels like I have just purchased a new super power! This is one many Chinese herbal pearl formulations and is designed for the treatment of chronic disease. Lyme disease is a multi-faceted and highly complex disease and therefore requires a naturopathic approach in addition to antibiotic treatment, in order to restore the bodies balance and chemistry.

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In addition to the natural oral remedies, I have also had nutrient IV ‘Myers’ infusions. This is a powerful cocktail of vitamins and minerals. It contains a combination of Magnesium, vitamin B, high doses of vitamin C, electrolytes etc… This method of nutritional therapy helps to support optimum health, and more specifically assists the respiratory tract, the chronic fatigue, and migraines.

Myers IV Infusion

I have also had blood Ozone therapies. This method of alternative treatment has been proven extremely efficient for patients with Lyme disease, as well as individuals battling cancer. This process involves drawing blood from the body, which is then oxygenised with a specialised machine and mixed with Heparin. It is them fed back though the body via an intravenous drip. The bacteria inside my body do not easily survive in these oxygenated environments so it helps to kill off some of the little beasts! It is a fairly painless procedure apart from getting the initial needle in my arm. My veins have been prodded and poked so frequently over past year, as well as a certain degree of inflammation in the body, meaning they really don’t want to ‘play the game’ anymore!

I have attended further consultations with Dr. E. Large, who is my wonderful specialist Lyme doctor. I continue to turn up armed with questions and this makes for a really productive session. I am keen to play a very pro-active role in my recovery process and I like to know exactly what and why something is being done. Control freak springs to mind!

I have had a fair amount of pain over this last two weeks, and the insomnia is definitely becoming a problem. I am hoping this resolves itself naturally over time, as I am not so keen to have to add yet another pill to my ever growing collection! Some of the pain is caused from a ‘die off’ of bacteria as a result of the Ozone therapy, so at least it is a kind of ‘positive’ pain!

The Gluten free food plan is going well and I am almost dairy and sugar free too, apart from natural sugars such as fruit. I have switched from cows milk to rice milk, and overall I am just trying to eat foods in their most natural forms. This is inevitably going to be more beneficial in the long run and it will help to support the body in maintaining optimum health.

Over the next few weeks my treatment will start to intensify, as I introduce IV antibiotics in to the plan. I am keen to begin these, but also slightly scared too! It is the norm to feel much worse and more symptomatic when on the proposed antibiotics, so it really will be a case of riding out the storm before I see the rainbow. It will take time before I begin to notice the positive effects of treatment, but with some determination and perseverance, I will feel the results eventually.

Blood Ozone Therapy

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