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

 

Advertisements

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.

IMG_2219

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

 

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!

IMG_8992

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.

IMG_8815

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!

PICC Line

Two days after arriving in California I headed to the hospital to get a PICC Line inserted. A PICC is a Peripherally Inserted Central Catheter. It is a thin tube which is inserted into a large vein in the upper arm and this is then threaded into another vein that leads to the heart. The PICC line can be used over and over again to  administer antibiotic medications, nutritional supplements and also for blood draws. When needing multiple intravenous medications daily this is often the next step as having needles inserted daily becomes painful and also veins begin to fail. During my first trip for treatment my veins became very problematic and this was just another layer of stress to add to what was already an erupting volcano of chaos!

There are of course risks with having this access line put in, but I feel in my case the benefits far out weigh the risks right now. The procedure itself wasn’t too bad. Luckily I had the support of a friend of mine who was also in the US getting treatment for Lyme. We met through an online Lyme support group but she has become a true friend and support to me daily and our similarities go beyond life with lyme. We are both the same age, have big dreams and are grabbing onto all treatment opportunities in the hope to achieve remission. To have her and her mum by my side was just such a huge relief and comfort too. The hospital was really efficient and before I knew it I was in my glamorous gown and cap and ready to be wheeled into theatre. The doctors and nurses were good at making conversation and distracting me from the procedure.  It didn’t take very long and insertion was not really that painful either. The area on the selected arm was numbed and carefully disinfected and then the only small pain was what I would describe as a hard pinch and the rest was pretty painless.  The line was inserted using an X-ray as a guide to ensure it was correctly placed and not touching the heart.  It was not long before I was wheeled back out of theatre with my new ‘accessory’, it was all a bit surreal! Later the same day I had increased pain in the arm but this is normal, it was just the medication wearing off and my body adjusting to this new foreign object.

IMG_7687

I felt very aware of my line at first, nervous to catch it or to move my arm too much and disturb the placement. You just have to be very careful, your range of movement is more limited and you can’t lift anything heavy with that arm, but most of the time you forget that it is there. The connecting tubes can neatly coil under a small fabric arm cover and this prevents the line getting pulled or caught in clothes. I was aware at first that people could see it, but I feel used to it now and just know it is part of the process to help me heal and I must just roll with it the programme, so to speak.

Having a PICC line or a Port seemed to be my only options for this next stage of treatment and be more beneficial long term too. For now I accept that it is just part of the process and it is providing reliable access for the medication I need daily. Showering is a palava and the arm can’t be submerged in water. Finding a reliable waterproof sleeve has proven difficult when you have a super skinny upper arm but with added strapping, cling film and medical tape I am just about managing! I have the dressings changed weekly at the clinic and the insertion area carefully cleaned in a sterile environment to reduce the risk of infection. Mixing and administering medication is becoming part of a daily routine and pretty much my full time job! I have to keep a track of ordering supplies and medications and I rely on multiple lists and spreadsheets as an extra brain! Sometimes it can all feel quite overwhelming but I know I must stay strong for getting through this difficult time now will allow me a future.


IMG_7726

Keep your eyes peeled for the next instalment of my journey in the Lyme light where I will be giving you the low down on the past four weeks of treatment and life so far on this side of the pond.

Thanks for reading and for your continuous support.

Chantelle xx

Time to say Goodbye…UK bound!

So the time has come for me to head back across the pond to the UK and continue my fight to beat this disease on home turf!

image

I am really excited at returning home to all my favourite people. At the same time I am also feeling anxious too. Whilst being in California, I have been able to have that sense of security through the knowledgeable Lyme doctors in a specialised medical environment. The intravenous antibiotics and other supportive IVs that I have had there have without a doubt been key to my medicine protocol and I feel like I have had the best start to my journey of recovery.

I often get asked, ‘So, are you better now?’ I can’t tell you how more than anything I wish I could say yes, but no I am not better and still very much harbouring a considerable infection
load. What I can say is that I am not as sick as I was three and half months ago, and I am making some great progress.

The H.Pylori infection seems to have gone, and the sheer relief from not having the upper stomachs pain is huge. I took two high dose antibiotics for two weeks for this particular infection and I am now pulsing a herbal Byron White formula to ensure this is rid completely from my system. My appetite has increased, and consequently I have managed to gain a bit of weight, or more ‘meat on my bones’ as my dad would say!
I have also noticed a great reduction in the amount of nausea that I get. My stomach is still problematic due to the Lyme bacteria, but for the majority of the time I feel more able to control this with anti-emetics and with the restriction of gluten, sugar and dairy from my diet.

I am taking home a huge supply of medication, both natural and pharmaceutical. Most of these are less readily available in Europe so I feel much more at ease knowing I can take all these back to the UK with me. I laughed as I had to purchase another suitcase, just for medicine, if only I had been on some huge shopping spree instead!

Once back home I will continue to communicate with my specialist doctor through email and Skype consultations. It is important that I keep up with taking all these oral medicines especially as I will not have access to the additional IV treatments I have been having. If I was a millionaire I would fly my doctor over to the UK to set up a clinic here. It’s so nice to be able to trust someone with your life and know they are doing there best to support you back to health. I have laughed and cried through my time at the clinic and I can say that I felt so cared for by every member of staff that work there.

I have had some more blood tests done and I will wait to receive these results back home. This is to check for some additional infections as well as possible adrenal and vitamin deficiencies.

Thanks to all my new American buddies who have made my stay so much easier. You have been there for me all times of the day and night, and have generally been so hospitable and kind. The next time I update you I will be back in the UK, so I will be back blogging once the jet lag wears off!

Follow my blog with Bloglovin