I made it home…finally!

Back in November last year (2015), it was finally time to head back the UK after a long 8 months in California having intensive medical treatment for this Chronic and life alliterating  illness; Lyme Disease. Packing was a mission to say the least, with approximately 20 kg of Medication and IV supplies! There were spreadsheets, to-do lists, medical letters covering me ‘fit to fly’ and forms to clear me through customs for over staying my US Visa requirements and to explain why I had this ginormous stash of meds! With so much medicine to packing it was like a strategic game of real life Tetris, removal of excess packaging, twisting, turning, unpacking and repacking until it all fit in and my luggage was within the weight limit! Two large suitcases, a smaller carry on case, a backpack full to the brim and of course a handbag with everything in it but the kitchen sink, I flew home.

 

It was a difficult travel schedule back to home turf with the physical pain, and lack of sleep, but the endorphins were flowing just knowing I was on route home and I powered through. I felt such a sense of relief that I was going to be in the same time zone as my family and close friends again, i just faced the travel as another moment of mind over matter. Unfortunately nausea got the better of me during the plane journey home and I was ‘at one’ with the porcelain bowl on multiple occasions. Let me tell you being sick in an aeroplane toilet cubicle is awkward! There is barely enough room to turn around in there let alone lean over! I was trying to casually prop my self up holding on to the wall, for obvious reasons not wanting to touch the toilet and accidently hit the flush button, I literally thought my head was going to be sucked into oblivion! Needless to say I survived both the toilet flush and the plane ride and landed safely, a little dishevelled but in one piece!

The final 2 months of my California stay, I started back up with a full regime of IV antibiotics; Ceftriaxone, Metronidazole and Azithromycin. This ‘triple threat’ combination of medicines were given to me in a pulsing regime of 5 days on 2 days off. These are three particular antibiotics commonly used to treat Lyme and Co-infections. Herxing was really tough at times, but over-all  I was able to see some much needed improvements in this last stretch.

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Meds, meds & more meds!

 

Although of course I am so happy to be home in England, I would be lying if I said that being so far away from the clinic was easy. Not having access to the specialists treatments makes everything that much harder and recovery that bit longer. I also now miss greatly the special friends that I have made through the clinic and at the various places I found welcoming homes to rest my head. I have certainly made some friends for life through this ordeal (both human & hound!) and for that I am forever grateful. I continue to have regular Skype appointments with my Doctor from a distance and medicine is shipped over and continued to be paid for out of pocket. I am now totalling spends of over £65,000 since getting sick with Lyme and the payout is showing no signs of stopping just yet. The financial burden scares me like crazy and does make me worry about my future. I am 31 and now have no savings left, let alone a house or a job! I at least have shed loads of determination!

It frustrates me that I can’t access even the basic antibiotic treatment from the UK via the NHS that I require in order to heal. I have also realised that the chances of getting empathy and understanding from the medical system here anytime soon also remains slim. Patients should NOT be forced to travel great distances or spend extortionate amounts of money on fighting this disease. I think access to medical treatment is a human right, especially when the country is capable and could provide the majority of the basic medication should they wish to educate themselves more on this crippling disease and change the treatment guidelines. I still don’t understand that when it is so obvious that this disease is causing havoc in my entire body that they still persevere to deny or accept a diagnosis of Lyme Disease. I have positive laboratory results for Lyme (Borrelia Burgdoferi) from the US and it is like they think I am enjoying this journey from hell! I am literally fighting for my health and fighting a medical system who are covering up what could potentially be an epidemic. I believe there are significant numbers of people who have been potenitally misdiagnosed or undiagnosed. From recent research, it even suggests that Lyme could be the root cause of illness’ such as ME, MS and even Alzheimer’s. I feel like there is almost a conspiracy to cover up this up as they know deep down the problem is far bigger than anything they understand or can maybe afford to treat. It is without a doubt that the treatment guidelines in the UK need drastically reassessing because as long as patients in the UK are being denied treatment for Chronic Lyme Disease than this country is essentially playing Russian Roulette with human lives.

Thankyou for reading my update on Lyme life and I please ask if you wouldn’t mind taking a few minutes to click the following link and sign the current UK Government and Parliament Lyme petition, it would be appreciated by all who suffer from Lyme in the UK.

https://petition.parliament.uk/petitions/113475Please Click Here.

This petition is to request the development of more accurate NHS Lyme tests and effective treatment protocols. This needs to get a minimum of 10,000 signatures in order for the government to respond and consider this for debate at Parliament. Two minutes of your time could literally save many years of someones life.

Remember… Little Tick, Big Problem! Prevention is better than cure.

Much Love and Happy New Year, may your 2016 be health, happy and full of adventure. Cx

 

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Part 2… Parasites, Porphyria & Osteopenia

Hello again!

Following on from my last post, I continue to update you on the highs and lows of treatment with Lyme disease and its many consequences and complications!

Over the course of my stay here, I have had to consult a new doctor at the clinic due to my increasing problems and complications. I have had some really insightful consultations with this change and in addition to learning so much new information, a fresh pair of eyes on my complex case has been extremely beneficial.

In terms of my viral load, I feel like this is much more under control, but by no means gone. We have had to keep shifting focus as there were still so many other problems to be figured out. I was experiencing more vomiting, more constipation and increased abdominal pain. I was loosing my appetite again, and noticing gall-bladder pain. I had a physical examination by my doctor and he suggested that due to the amount of tenderness across my abdomen, gall bladder and liver that I may in fact be suffering from parasites. This was an initial concern when I first fell ill 3 years ago, as I had been experiencing similar symptoms in addition to weight loss. I have previously had two stool samples sent to testing laboratories both here and in the UK, but they had both come back negative. Thankfully due to the doctors expertise and experience with other patients with similar symptoms, he felt almost sure that the cause of some of this pain had to be parasites. He explained that the type he thought I had doesn’t always show up in the tests. The reason being is that the parasites latch on to the mucus membrane of the small intestine and pretty much cling on for dear life! I was also suffering from low stomach acid and this enabled the parasites to thrive even more inside me! The suspected parasite was the ‘liver fluke’ and the doctor made the decision to start me on some treatment. Within days I was experiencing episodes of constipation. It was explained to me that this might happen and the reason being was because as the parasites begin to die off, they increase in size which can block the flow. They also pump out anaesthesia like chemicals which cause a temporary freeze of the bowel. The Parasite continues to swell and then shreds and is dumped out through the bowel, then causing episodes of diarrhoea. Throughout this period I was excreting multiple eggs and parasites and I couldn’t believe these things had been thriving off my insides for the past 3 years! It actually makes me shiver just thinking about it! Bleugh! I still have one other course of medicine to take for this which is called ‘Alinia’. It is well known pharmaceutical that is used in the treatment of parasitic infections of the intestine. This anti-parasitic agent interferes with substances in the intestine which are allowing the parasites to stay alive. This medication should finish off wiping out the final batches of gut monsters inside me… It better! This medication is costly here in the U.S at $46 per pill! Yes, No joke! With the help of my Doctor we have ordered this prescription from Canada at about one third of this price, but unfortunately it takes 3 weeks to be delivered and go through customs so for now I am just waiting. In addition to that medication I am also now on another antibiotic called ‘Actigall/Ursodo’l. This is to help concentrate the bile through the gallbladder which will help flush it out. This is needed as where the parasites have lived in the bowel they have also crept up and caused some congestion in this area. Nothing is ever simple!

Recently I have also been experiencing particularly difficult sets of days where I just felt much sicker than usual, a consistently ill feeling and bed bound with the pain. There was more nausea, vomiting, muscle weakness, heart palpitations, back pain and what I can only describe as an altered state of mind, sort of on another planet! These are also symptoms I do experience from the Lyme and Co-infections, but not always of such a severity. My Doctor once again had a thought that there may be something else causing this and in the next episode of this type, he requested that I sent a urine sample to the lab. His thought process behind this was suspected AIP – ‘Acute Intermittent Porphyria’. This is a fairly rare condition and due to the fact that the symptoms mimic other conditions it can go un-diagnosed. Although many can be genetically susceptible, only few seem to develop symptoms. It is usually activated by other conditions and in my situation Lyme Disease has done just that. In order to obtain a diagnosis, the urine has to be tested when experiencing an attack. The sample has to be carefully kept at a certain temperature and protected from light, so this meant trying to wee in a tiny pot practically in the dark! I managed to time this well with a suspected attack and as expected my lab tests confirmed, I do have this type of Porphyria. I am still very much getting my head around this new and additional condition and when I have absorbed more about it I will write a separate post with detailed information. When reading about it I am bombarded with science, and this isn’t always that easy to understand or explain. I am currently discussing with my Doctor ways in how I will control the attacks of sudden pain and neurological symptoms. There a variety of ways to help suppress the activity to a certain degree but not stop it entirely. This ranges from yet more dietary changes, some supplements and maybe injections. I am currently treating attacks with IV Glucose fluids and pain medications. I can do the fluids myself through my PICC Line, but long term if the attack is of this severity and I don’t have my PICC line, this would have to be treated in hospital.

As you can understand from reading my blog posts, It is not just Lyme Disease I am now battling its a host of other bacteria, virus’ and medical conditions! Life really has changed dramatically and I am certainly hoping that the list of problems will stop expanding!

In terms of the infection load, the Babesia is really at the forefront currently. I have written about this co-infection previously, but I will re-cap a little as I know all of this is pretty complex. Babesia is a malaria-like protozoan parasite and continues to thrive in my red blood cells. It almost seems invincible! I have been on multiple IV and oral medications and herbs for this and it just won’t shift. I have had periods where I felt like the load had decreased and then all of a sudden its like it multiplies over-night. My doctor often looks at my blood through dark field microscopy, and I have seen with my own eyes the damage and physical formations of this parasite in my red blood cells. It has caused me to have low iron levels, air hunger and huge disturbances in my sleep. I have insomnia, extremely vivid and disturbing nightmares and drenching night sweats. My temperature throughout the day can fluctuate from hot flushes to chills. The Babesia headache for me mostly occurs at the base of my skull and radiates pain down my neck. With all the infections I have, I have literally had some sort of headache continuously for the last 3 years, its ridiculous. Its not often I am found without an ice-pack or a heat pad. On a mental level, this seems to give me increased brain-fog, a feeling of disconnection in my body and a great sense of being overwhelmed. Sometimes the smallest daily tasks of a functioning adult seem like such an enormity. The knock on affect of this can be more tears and anxiety. It can make difficult days seem impossible, but I try and bear in mind that this is the bugs not me!

Last but not least, I focus on my skeleton! Dem bones, dem bones, dem lovely bones! Well in my case some slightly affected bones. I have a lot of physical pain, which has developed since getting sick and its not surprising knowing that the Lyme spirochetes have wiggled there way into my brain and joints! Lyme almost hunts down areas of weakness in the body and heads straight for them to get cosy and cause havoc! With the increased pain in my hip/pelvic area, it made the Doctor and I start to think that there may be some sort of underlying weakness there. I went for a Dexa Bone Scan and the results came back with Osteopenia in the Femoral Necks. These are the long connective bones just below the ball and socket hip joint. My scan revealed the osteopenia and this is basically low bone mineral density. It is not as severe as Osteoporosis but is often a precursor to this. I am hoping that catching it at this stage means I can work with my Doctors to halt any further deterioration. I have also read that it is possible to often reverse this damage with supplements, dietary changes and weight bearing exercise, so fingers crossed.

So, I leave you with all of this information to digest and hopefully this will answer some of your questions as to why I am still so sick, its just such a complex battle. Layers and layers that need un-ravelling and treating and timing is crucial. That being said, I still fully believe I will make it into remission from Lyme eventually and hopefully get all of the other conditions under control. It is not an easy task, but my determination continues to grow.

Much love and as always many thanks for your continued support from around the world.

Chantelle xXx

California…Round Two

On the 16th March I set off on a big bird (plane) for my next course of intensive medical treatment over in California to help my ongoing fight against Chronic Lyme Disease. I had no idea just two months earlier that I would need to return to the specialist clinic, nor that I had to once again think about raising ridiculous amounts of money again to do so. I had been deteriorating more noticeably toward the end of 2014 and by February 2015 I knew I really didn’t have any other option but to access more treatment overseas. The oral antibiotics I was having to ship over to the UK were not hitting the bugs hard enough and I wasn’t prepared to risk a complete relapse right back to square one. To be in the UK and have no intravenous antibiotics was hindering my progress massively and I could feel myself slipping more and more into the grip of the multiple infections; Lyme, Babesia, Bartonella and Mycoplasma.

The prospect of returning to California was a daunting one for many reasons. I knew what this type of treatment involved and how it was very much going to make me feel worse before better. I would also be flying solo for the trip this time too. I have got used to me, myself and I for company in these periods of illness, but there is only so much talking to the walls you can do! I also just felt an overwhelming amount of stress just thinking about trying to sort out the financial logistics of it all. This illness is more expensive than I can even put into words. You literally haemorrhage money and this is no exaggeration! I have spent approximately £35,000 so far trying to get healed and there often doesn’t seem to be a sign of the spending stopping. A working individual on a good salary would struggle to find this amount of money as ‘spare’, let alone when you are too sick to work and therefore have no income.

For about 4 weeks prior to my departure I feel like I cried almost every day…who knew one human could shed quite so many tears! The pain, the stress and the constant worry just seemed never ending. It was not just the forthcoming trip that made me anxious, but the continuos fight for survival and never knowing if and when the battle would end. This illness doesn’t give you a time frame or an end date. I can only describe my body at times like a shoe lace; when its tatty, worn and almost thread-bare and you don’t know if its going to last another day or just snap when you least expect it… and lets face it, there really is never a good time for a shoe lace to break! Lyme disease is inconvenient, intrusive, controlling and just one giant cloud of uncertainty. We learn all sorts of life skills as we grow up but nothing can prepare you for feeling like a hostage in your own body. This is Lyme, day in, day out.

With all this difficulty aside, I knew I had to get a grip and ‘crack on’! I would be flying to the US one way or another and I had to keep my mental strength in tact to enable me to do so. I wasn’t prepared to give up or be negative, this was just not an option. I wrote lists after lists and got to work kick starting my second fundraising campaign. As much as every bone in my body hates to ask for financial support I just don’t have a choice. Without fundraising there is no way I could access the kind of money needed for this type of medicine. Things started to take shape and before I knew it I had booked my flights and accommodation and dusted of my suitcase. It was happening! USA… Round 2.

I arrived in California completely exhausted, full of a head cold and barely able to string a sentence together! I am surprised I actually managed to arrive in one piece! I literally dumped my bags, power showered off the travel dirt and lay horizontal for the next 10 hours! Sleep is never to be underestimated, sick or not! I had a day to settle, unpack and get my head together for the next stage of treatment. I was ridiculously nervous but at the same time just so relieved to know I was only 24 hours away from some productive help towards getting my life back. I am beyond grateful to be able to access this treatment and I know without it my future would be merely existing or worse death.

My current fundraising page is very much an on going project and I just continually hope that I will somehow be able to raise the needed funds for treatment. Failing to do so doesn’t feel like an option, so I cling onto every bit of hope and believe that things will work out one way or another. For anyone struggling in any part of life right now my words of wisdom to you would be to believe that things will work out, and always make sure your dreams are bigger than your fears.

“Believe in yourself and all that you are…

Know that there is something inside of you that is greater than any obstacle”.

If any of you reading this are able to support my fundraising in any way at all please know that every penny is truly appreciated and a massive help. No donation is too small and would contribute to my journey in fighting for a healthy future.

Thanks for reading and be sure to subscribe to my blog if you would like to receive notifications of new updates and progress reports.

Much Love, Chantelle Xx

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2015 begins and the drama continues…

January has been a complete whirlwind; an unpredictable, rapid and destructive 4 weeks! It has been a challenge and not quite the positive start to a new year that I had hoped. For now, I have given up on the of idea of being able to predict how I will feel in the future, when these days I can’t be of sure how I will feel from the start to end of just one day! This is a complex illness, and needs to be un-ravelled bit by bit. I am always conscious of the bigger picture, but I am aware of the multi layer approach to healing for the long term benefits and chances of remission.

I began the new year with a totally un-invited bout of cold and flu symptoms which persevered for approximately two weeks. It is surprising how much this can knock you down when your body is already fighting so much. I had to halt taking my antibiotics as a die-off on top of this would have just been an overload for my immune system. It was mentally disappointing, as I know how the current infections will take any opportunity to thrive whilst I am not actively treating them with antibiotics. I followed Doctor orders and also kept in mind the words I often heard from my Mum growing up; “Feed a cold and starve a bug”! This was also particularly important as over the past 6 weeks I had began loosing weight again, regardless of consciously trying to increasing my calorie intake. Its hard to know exactly what is causing this, but it is something we are monitoring closely.
On top of this I have been trying to cure another mysterous rash which has covered my chest and back. Four different prescriptions creams later and more baffled GP’s the rash is still here!

Once the cold symptoms were clearing, I started a combination of new medications, Atovaquone (Mepron, Wellvone) and Azithromycin (Zithromax).

Mepron is an antiprotozoal medication that can penetrate the cyst form of Lyme and also treats Babesia. It is a thick, yellow suspension which visually reminds me of poster paint from school art lessons and it is ridiculously expensive. It costs a hefty £500-£600 per bottle, and with this price-tag it has been nicknamed ‘Liquid Gold! Mepron is known to be especially hard on the liver, so supporting this organ with supplements and constant detoxification is key. Not only does this prevent damage, but it also helps to clear my liver pathways, increasing my ability to handle the medication for a longer and more effective time period. This medicine is also absorbed better when taken with a fatty food, so a tub of organic almond butter and a spoon has been close to hand!

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Zithromax is prescribed for the treatment of acute bacterial infections. It is a broad-spectrum antibiotic, meaning it is active against a wide range of bacteria and thus being a good antibiotic to try as I have multiple tick-borne infections. A combination of Zithromax and Mepron is known as an effective Lyme and co-infeciton treatment protocol, and I am hoping I get some successful results from this.

The herx reaction from this combination has not been easy so far, but it is bearable. I bare in mind that when treating, there is a level of ‘No pain without gain’ to consider too. I ensure I get regular blood tests to measure liver and kidney functions and other important levels in my body. Unfortunately on this occasion Januarys test results went ‘missing’. I am non the wiser as to where or how this happened, but I will attend another blood draw in the hope that I can have some numbers on paper soon.

“They never said it was going to be easy, but I am hoping it is going to be totally worth it”.

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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” 

July – August 2014

imageI begin with looking back to the summer months this year as my treatment continued. I was put on a number of different antibiotics as my infection load was still very high and I was still battling Lyme and co-infections. This included Doxycycline, Septra, Malarone, Tinidazole and Valtrex. Although antibiotics were key, the herbals have continued to play a huge part in my protocol too. I have always been aware to keep the balance of herbs in the protocol as I feel they have the power to really heal the body in so many ways. I also trust that they help to un-do the detrimental effects of long term antibiotic use. One of the most difficult parts of this disease is the fact it is such a long term journey to recovery, and there is no guarantee that each medicine I try will work. I have noticed whilst taking each medicine, that it often seems to have the desired effect on the infection it is targeting, but then the remaining symptoms of others infections tend to escalate. Its like you can never catch up! It is also not possible for each antibiotic to be able to treat all infections, or to take too many at once, as the body and more importantly the liver just gets totally overloaded. The toxin load can be so dangerous and already being aware that my genetic make-up doesn’t make it simple for my body to detox, I have had to take treatment slow and steady. Doxycycline & Tinidazole: I was on high dose of Doxycycline for a long period over the summer and this has its own complications. Firstly at such a high dose it makes the skin extremely sensitive to the sun so it was a shady seat under the garden umbrella for me! On a more complex note, when you treat Lyme Disease at such a late stage, it becomes disseminated throughout the body and the spirochetes play a game of hide and seek. With the infections spread from the blood to a variety of organs and joints of the body, it makes it so difficult to try and combat. When treated with Doxy it continues to try and avoid destruction. Like a chameleon it can change formation and takes on a cyst structure, protecting itself from the medication. This means because of the bacterias behaviour under attack, I had to take an additional medicine at the same time called Tindiazole. This impairs bacterial enzymes and removes the biofilms which can block both the immune system and the antibiotics. Septra DS: This is a medicine that has been used for years to treat a host of actute and chronic infections. I was mainly targeting the Bartonella infection with this. My symptoms with this infection have been debilitating headaches, light sensitivity, restlessness, back pain, and what I can only describe as a more heightened sense of irritability and often very emotional state. I feel like the infection has the ability to really have an effect on someones mental state and whilst treating this I definitely felt on edge and more irattional. I have previously tried Rifampin for this co-infection, but as mentioned in previous posts my reactions to this were much worse than a herx reaction. My body could just not tolerate this medicine at all and it even landed me in hospital. Malarone: Malarone is more commonly known in both the treatment and prevention of Malaria. This is a combination of two main anti-parisitic ingredients atovaquone and proguanil hydrochloride. It is used in the treatment of Babesia. This co-infeciton is a protozoal parasitic infection, not a bacterial one like many other of the tick-bourne infections. Malarone and Mepron are two of the primary medications used in the treatment of Babesia, and the choice to go with Malarone, was purely down to it being marginally less expensive as my treatment is till being self funded with no support or medication being issued by the NHS. Whilst being on all of the above mentioned antibiotics, it has been really important that I had routine liver function tests and full blood count. This is to ensure there is no detrimental effects from taking the medicines, just the zapping of persistent bugs that have invaded my body! So, as it has been a while since I last posted this is just select information as a start to update you all. I have so much to tell you, but I don’t want to hit the information overload button! I will continue to discuss medication and the highs and lows of lyme life in more posts to follow. Thanks for reading and for continually supporting me on this journey back to good health. I would not have the strength to keep fighting on some days without this support network. It means the world. There will be life beyond Lyme Disease and I will discover it. Big Love, Chantelle x

New Year, New Meds!

I am happy to say I finally attended my first consultation at GMA (Gordon Medical Associates) yesterday. Armed with pen and paper and my ever growing medical file, I managed to keep my concentration for two hours! I had to discuss the last 15 months of illness; not easy when the list of symptoms is probably longer than Santa’s naughty list!

It was refreshing to talk to a Lyme literate doctor who is used to treating patients with this illness and who has wealth of knowledge and understanding of the complexities that surround not only Lyme, but the co-infections too.
This disease is pure evil, fact!  There is not one part of my body that hasn’t been affected by it in some way. A symptom lottery is how I explain my day to day pain, because I never know how I am gonna feel. It can be anything from burning skin, tremors and nausea, to chest pains and bladder dysfunction and this is just to name a mere few!
So you may be wondering, what is my plan to try and fight this beast?
Well, here is the complicated part! Not only do I have Lyme, but I also have some  co-infections too. The Co’s I have are called Bartonella and Babesiosis, both of which are also tick-borne diseases, so it’s true bad luck does come in threes! Each of these bacteria needs different types of antibiotics and herbal supplements in order to effectively try and rid them from my body and lower the chances of me relapsing years down the line.
Over the next few days I introduce a two week course of three different oral prescription antibiotics, to start to treat the Bartonella. These are Clarithromycin, Rifampin and Diflucan. I have done a lot of research on different meds and Rifampin is the one that causes many difficult herx reactions. This will mean an  increase of symptoms and the severity  of them, maybe new symptoms too. It also has a reputation for causing extremes in mood and mental state, so looks like I will be hibernating in this hotel room till the worst is over, don’t want to scare away the other humans in the hotel!
In addition to the antibiotics, I have also started various new natural supplements. However hippy you might think this sounds, it’s a must in order to support the bodies organs and my immune system, which has become suppressed through this illness. I will now be taking Ox Bile to support my liver, Itires to help my Lymphatics, Cranstat Extra for my urinary tract and Magnesium for my bowels. With out going into detail on my symptoms, especially the latter, you can take my word I need to take these herbals! I will also continue to take the supplements I started a month ago, which are Chlorella, Co Enzyme Q10,  Allicin, Serrapeptase, B12, D3, Krill Oil, Vitamin C and a multivitamin. In addition I take Omeprazole to protect my stomach and help with the acid and a good probiotic. Both of which are important especially when taking a lot of antibiotics. With all these pills and potions I must detox with my Epsom salt baths and lemon water too, everything helps, trust me!
After two weeks of the oral antibiotics, I will then introduce the intravenous antibiotics to begin to treat the Lyme. This will be for a minimum of four weeks to start with, all dependant on how my body reacts. This may be combined with some IV vitamins too. Everything has to be added slowly so that body is not shocked by the sudden intake of medicines.
Besides all the medicine,  I have also had to start a gluten and sugar free diet, with minimum dairy intake… This is vital, as the bacteria feed off those food types and I need to make my body as natural as possible. Its neither going to be fun or easy, but I am sure after a few weeks I will be settled into a routine. It’s not like I have a choice in the matter so I am just going to have to crack on with it!
Last but not least, I would like to wish everyone a HAPPY NEW YEAR!
Life can change in an instant, so live for now, enjoy each day and worry about the future when it happens. Be happy, healthy and go and make your dreams come true. Smile, love and laugh…you have one life, live it.
Best wishes to you all for 2014, may this be the best year yet and more.
Chantelle x
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