UVLrx – Let there be light!

Whilst I was in California accessing intravenous antibiotics, I also tried various other alternative treatments. One of which was an 8 week course of UVLrx. This is a new cutting edge treatment for infection and virus load and is getting great results for patients with Chronic Lyme. Ideally it would have been more beneficial for me to have up to 20 treatments of this but due to lack of financial funds it just wasn’t possible.

 

 

This treatment is the first of this type of direct-to-blood intravenous light therapy treatment to be available. For each treatment an intravenous catheter is inserted into a blood vessel in my arm and the Polychromatic light source administers multiple wavelengths into the insertion site for 1 hour per treatment. Other light based treatments only deliver a single wavelength where as this treatment delivers 3, therefore increasing the potential for healing and for destroying unwanted pathagons. The UV light in this treatment is a powerful antimicrobial agent working against blood born pathogens in the body. The additional wavelengths delivered have been proven to repair damaged cells in the body and enhance the immune system.

 

 

Prior to starting this I was slightly skeptical as to how much it would help, but after seeing other patients get such great results I knew I had to give it a go. I can tell you though, I literally noticed the difference after the first treatment, and during sessions 3-5, I actually noticed the difference during the hour of those sessions. My energy levels over all increased and on occasions it was like I had been given a double espresso! I found my mental clarity improved, and with each treatment my brain fog lessened considerably. The brain fog is on-going, but I do feel as a whole it has lessened in severity and my cognitive abilities have improved. I noticed over time, a considerable reduction of inflammation and pain. This was apparent especially in the back of my head and base of skull and neck, which after having encephalitis was a really troublesome area. During sessions 6-8, I felt I did herx much more than previous sessions, and our thoughts on this were that we were reaching infections at a much deeper level. Maybe it was some of those super persistent bugs who thought they were getting off lightly after invading my body!

I had noticed prior to this course of treatment that my tremors were at a high level and the feeling of internal vibrations/jitters was quite intense, and again although this does still exist on a daily basis the intensity of these type of neurological symptoms are greatly reduced. I believe for myself personally that I was responding well to this cutting edge medical technology and had I been able to afford further treatments of this type, that I would have most likely continued to see positive results.

UV light treatment has been used for over 80 years and has been proven to make rapid readjustments to a variety of health conditions. I think it was only a matter of time before a machine of this nature was invented and I hope that with time it can aid many patients in their healing journey. I am really pleased that Gordon Medical Associates have invested in this technology as it is another option which is less toxic to the body than conventional medicine.

As a whole I feel this treatment has reduced both my viral and infection load and I wouldn’t hesitate to recommend this to another patient who is also suffering with chronic levels of pain and inflammation.

Big love, hope and light! Chantelle x

 

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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

 

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”.

perseverance

The last chapter of 2014

December seemed to completely fly by. Maybe it was all the distraction from the festive movies on the box and decorating the tree! I have always been a huge Christmas fan, maybe I was an elf in my past life who knows?! In an ideal world I would have been joining in with all the fun in the build up to Xmas, but for the second year running I really just didn’t have the energy for it.

I continued to suffer from an array of symptoms and there just didn’t seem to be any signs of relief from these. I was back on the antibiotics, now that the toxic load had decreased, and was starting back on the meds slow, and steady by building doses up little by little. I know that some of my symptoms were increasing due to the herxheimer reaction (die-off) and others were infections which were still determined to thrive in my body, finding me an ideal host! Really not very idea for me at all! This was a difficult time and I was spending increasing amounts of time lying horizontal and feeling generally weak and nauseous. When I am experiencing such exhaustion and pain, even showering becomes a mammoth task and sometimes that might be all I achieve in a day. Other days I am more able and can walk round the block and cook a meal, it is all just a lottery. I never really know form day to day how I am going to feel.

My Lyme Doctor and her team had put their heads together and came up with the next plan of action. It seemed out of all the infections I have it was currently the Lyme Borrelia bacteria and its partner in crime Babesiosis (Babesia) that were causing me the most problems. Babesia is a protozoan parasite that infects the red blood cells and it is extremely persistent. As it enters the red blood cells it matures and divides and within 1-2 weeks of incubation it starts to cause havoc. One of my first noticeable symptoms of this illness was night sweats, which started sporadically, until eventually occurring up to 4 times a night and were drenching in nature. This then escalated to myalgia, nausea, loss of appetite, air hunger and pressure headaches. Last year the GP also discovered I had developed low Iron levels, yet another common symptom of this co-infection and another daily pill to add to the pile! I sometimes still struggle to comprehend that this tiny tick has transmitted such aggressive infections into my body.  It has definitely been a shock to my system both physically and mentally!

The Morphology of Babesia – Photo Source: http://web.stanford.edu

On a more positive note, over Christmas I made it back to Cornwall to see my Family and some friends too. I was happy to be there in person even if the brain fog was making it difficult to be there in full focus. I spent most of my time in the house but made sure I I was wore my novelty santa jumber. I was able to live through the excitement of the festive period through the eyes of my little Nephew which was magical. I also won’t deny that a hug from my Mum and Dad, sometimes can make things feel a whole lot more bearable, even at the age of 30! I also tried to remember that although I am still stick, This Christmas I was in a slightly better place than the year before and finally in treatment and for that I am grateful.

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

Another Day, Another Hospital… Not quite how it looked on ER!

It has been ten days since I last updated my blog… Why? Well! My body decided that there wasn’t enough drama already in my life and decided to bring a little more to my daily life with Lyme! I would have much preferred a day symptom free, or gluten free, but obviously that was too much to ask!

So I was four days into my new medication programme, and it had been two days since I introduced the Rifampin. I seemed to be tolerating everything well (I thought!) and the only obvious change I had noticed was my new bright orange coloured urine!

Then the pain began to kick in at the end of day four. I was starting to experience head and neck pain which wasn’t like my usual Lyme headaches. Since becoming unwell I have experienced some really debilitating headaches. These can last for days or weeks at a time and have even needed morphine to control. I thought these episodes were bad, but this was so much worse. At first it felt like there was a heavy weight in my head which was rolling around and causing bruising and this was interspersed with various stabbing pains. It felt uncomfortable to walk around or make sharp movements with my head, so I made sure I was drinking lots of water and went to sleep.

At 4am I woke up to more intense pain, still in my neck and head but ten times worse. My head was throbbing and felt so full of pressure, as if it was a balloon full of air to the point of bursting. With every slight movement the pain increased and I was confined to lying horizontal like a corpse, trying not to move even a millimetre. I felt unable to put my chin to my chest like there was no range on movement left in my neck at all. I took some painkillers and lay for an hour in the hope I would sleep a little more. Unfortunately the pain was just increasing and I was soon in tears…again! I began to feel really nauseous and this was closely followed by frequent episodes of vomiting and urgent desires to empty my bowel! You get the idea! The logistics of this just weren’t good! Needing to get to the bathroom meant having to get out of bed and moving was just not a good option. I crawled slowly to and from my bed until this became too much. I gave up and decided to confine myself to the bathroom floor. Every time I was sick the pressure was increasing and I literally felt like my head was going to explode at any point. If I try to describe the pain, I would say it was like I had been shot in the head, stabbed ten times, had swords through every nerve and someone had taken out the contents of my head, mixed them in a blender and just dumped them back in again! It felt so wrong on every level. I put ice packs all around my head and over my eyes and lay in the dark. I felt really sensitive to light and sound and could barley open my eyes. They felt bruised to touch and to blink was just more pain I couldn’t handle.

By about 10am, I was now hysterically crying and could not find anything that would relive the excruciating pain, so it was time to phone a doctor. Louise made calls, explained how I was feeling and she was soon writing down the address of the local hospital. She picked up my medical file and helped me stumble to the hotel foyer to get a taxi. I had just made it to the ground floor by sitting crouched in the corner of the lift and then a couple of minutes later I fainted. Luckily there were a couple of good Samaritans in the reception and they kindly offered to drive us to the hospital. For once I didn’t hesitate to say yes, or worry about inconveniencing someone, I just couldn’t get there fast enough! I was so grateful for their kindness and wish I knew who they were to say a proper thank you. I lay in the car clutching my head as every turn or bump in the road was just adding to the pain.

I arrived at the ER department of the hospital soon after, and was wheeled to a cubicle straight away. I was handed sick bags and had nurses taking my vital signs within minutes. I had some blood taken and was soon hooked up to some fluids as they were concerned about dehydration. I explained the pain as best I could through the tears and informed the doctor of my current illness and all the different medication I had started taking. They administered a variety of Intravenous medications for the pain and nausea, as well as a type of narcotic to help relax the body, the tension in my head, and enable me to sleep through some of the pain. Within about three hours I had stopped vomiting and noticed a slight relief, the pain had gone from a ten to an eight and even this slight change made a world of difference. My blood tests came back and there was no major concerns or signs of damage. There were out of range neutrophils/segs levels in my blood but this has been picked up previously and seems to be due to to the chronic bacterial infections I am fighting. As a whole there was nothing which alarmed the doctors and he was happy that the pain would ease with time. He explained that this unfortunate reaction would not cause any lasting damage and suggested that I stop all new medications and consult my Lyme doctor the following day. A few hours later when I felt I was able to make it home, I was discharged with appropriate papers and prescriptions for painkillers and antiemetics.

Rifampin Reaction

I was soon back at the hotel, but still felt far from OK. Although the medication was helping to a certain degree, the pain was still very much there. For the next two days, I was looked after and barely left the bed. It still hurt to move my neck/head and so was even spoon fed at one point! Although eating was the last thing on my mind, I can’t really afford to drop any more weight, and I also needed something in my stomach when taking all these pills, or that will cause its own problems! I was exhausted, and the dizziness, drenching sweats and tremors had noticeably increased. I slept a few days away and then went to the clinic to have some more IV fluids with electrolytes. At this point I just had a small and bearable headache and thankfully the worst was over. (Massive sigh of relief!) I consulted my Lyme doctor as directed by the hospital and was told to stay of all current medication and a new medication list would be written up which I was to commence after a couple of days.

It seems my body just did not tolerate the antibiotics at all, in large due to my liver being so congested. The medication had killed of few bacteria but as this happens more toxins are released. By body was so ‘toxic’ that I was most likely having a bad herx reaction, but at a level which can be too dangerous to the body.

I have stopped two out of the three antibiotics, and replaced these with a number of new herbal supplements. I am having to start a more gentle approach to fighting these bacteria, one that my body can tolerate. This type of sensitivity is not unusual when suffering with Lyme and Co-infections, and does not mean I cannot treat the illness, it just has to be done gradually, and with a less aggressive approach. I felt a little disappointed at first, that I was unable to tolerate the other meds, especially as this new protocol will not be as time effective. With this in mind though, I have just accepted that it’s how it has to be and like the traditional Aesop fable of ‘The Hare & the Tortoise’ teaches us; slow and steady wins the race!!

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