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

 

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

 

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

Part 1… Treatment Update from California

As you know my current predicament with Chronic Lyme Disease has brought me back to California earlier this year (March 2015) and I can’t believe I am still here! Yes thats right, just over 6 months in this sunny side of the world. It is still very surreal and sometimes I literally sit and say out loud ‘I am actually in California’! It has been a long trip, far longer than anticipated and it gets lonely here being thousands of miles from family and friends. I am homesick without question, and feel very much out of my comfort zone, but I have to just take one day at a time and Skype everyone back home ofter to ensure I don’t completely loose the plot!

My body feels massively overwhelmed with its current ‘issues’, and trust me there are a lot, like more issues than Vogue! It is a challenge to treat so many problems at any great speed. Things have to be addressed layer by layer and with such detail. Antibiotic treatment was really making great changes in my body, my energy levels and clarity of thought was improving and both the Doctor and I felt as if progress was consistent and the levels of infections were decreasing. Then bang! Another surprise spanner in the works… A virus! In mid June I had a 3 day bout of extra symptoms on top of my usual ever growing list. At first I was unsure if it was a herxheimer reaction to my medication which was treating the infections or a toxic build up from the die off, as this can be an ongoing problem for me and puts strain on my organs. As the following week passed the Doctor had to take me off my current antibiotic medication as my body needed to change focus to fighting the virus as this was only going to slow treatment down or cause complications if it continued. I felt disheartened at this and it felt like another ‘1 step forward 3 steps back’, a bit like a cha cha cha without the excitement and grace! It is unsure how the virus was transmitted. It could have been through something as simple as taking the bus to the medical clinic as I have such a suppressed immune system, but we now feel it was more likely from a mosquito. I cover myself in insect repellant daily, but obviously I was a tasty target for this particular flying beast. It was a real reminder that things can change in an instance and no matter how vigilant you are sometimes it is just avoidable. Over the 2 months that followed, things started to go down hill. It felt like the virus had really taken hold of my body and this was this causing increased levels of pain throughout, which were escalating rapidly . In addition the reduction of treatment for my other bacterial infections meant that these opportunistic bugs were thriving, not exactly the situation I was hoping for!

In mid August, pain reached new heights and I couldn’t get the level of pain under control. The pressure in my head was unbearable, I had a fluctuating temperature, vomiting, face palsy, tingling and numbness down one side of my body and dizziness. I felt severely exhausted although I was literally continually horizontal, sleeping the hours away! On the 14th August, I had no choice but to make my way to the emergency room, I was sure I couldn’t continue like this over night with symptoms showing no signs of slowing down, tears were strolling down my cheeks.

Waiting it out in the ER with a warm blanket and a sick bucket.

Waiting it out in the ER with a warm blanket and a sick bucket.

I made my way to a local hospital and after a triage assessment, blood tests and a 5 hour wait I was eventually seen my the main consultant doctor on duty. I was immediately put on fluids to rehydrate from all the vomiting and anti-emetics to stop the nausea and sickness. I was given shots of pain medication and within the hour I felt completely wiped out and on another planet! The medication made me feel almost drunk, but without that happy feeling! I spent the next 3 – 4 hours drifting in and out of sleep as the medicine got to work. Later that evening a wonderful friend Katherine, came to be with me in the hospital. She has been a great support since we first met in 2013, and due to her daughter being greatly affected by Lyme Disease, she is a world of knowledge and support. It was so comforting and helpful to have her by my side, especially as I became so drowsy I was struggling to communicate with the doctors and nurses, as well as my family back home. The doctor kept a close eye on me, and his primary concern was that I may have had a mild stroke, due to the droopy eye, face palsy and decreased sensation down my left arm and leg.

Hospital Bed Selfie!

Hospital Bed Selfie!

I was admitted into a ward and repeat bloods were run and a CT scan too. My bloods revealed I had very low levels of potassium, most likely caused by the increased vomiting over the previous few days and potentially the on-going use of antibiotics. Potassium is a mineral found at large inside the cells within the body and if levels reach a dangerously low range it can cause your heart to stop. I was immediatly prescribed potassium and given this every few hours by IV throughout the night and the following morning until my blood levels and electrolytes began to stabilise. I was given the all clear from a potential stroke and the diagnosis was viral encephalitis, inflammation of the brain! I only had to stay in the hospital one night and was gladly discharged within 24 hours. I went back home and continue to sleep, take meds and run fluids through my line. It was all more drama than I needed, but the treatment I received in the hospital helped to control the pain and symptoms.

By Monday I was able to communicate with my Lyme Doctor and begin more specific treatment for the virus. I was put on ‘Byron White A-V drops’, a potent concoction, which even one drop caused a painful reaction. Over the next few weeks I had to gradually increase the drops until I was taking them twice a day. This literally floored me initially, but I knew I had to persevere to treat and reduce the viral load.  Over time my level of toleration to this treatment grew and I started to notice a reduction in the viral symptoms and load. If only that was it! As those symptoms decreased, it then made way for all of the bacterial infections which had been escalating in the background to surface!

Thankyou for stopping by to read this new update.

To ensue this post isn’t text overload it will be continued in ‘Part 2’!

 

Whatever you do you have to keep moving and never ever give up…

Hello! It has been so long since I have posted a blog on here, and I am gearing up to updating you all with my current medical ‘status’ soon I promise! It is not that I haven’t had anything to update you with, it is the complete opposite! It has been one crazy ride this past 6 months and I haven’t known where to start to put this experience into words, or really had the mentally capacity to do so! My body right now is beyond complicated!

This is just a brief post as I start a new week with some new positive thinking as I try and keep myself and others going through whatever battle they also may be facing…

I have come to realise that success isn’t measured by just what you accomplish in life, but also how you can inspire and support others. I will keep fighting this battle, not only for myself but for all of you who suffer too. Wether this be from Lyme Disease or another chronic, debilitating and often invisible illness. I want to inspire and motivate people to hang on that bit longer, to fight that much harder and to become mentally stronger when you feel at your weakest. I want to hear someone say ‘because of you I didn’t give up’. Keep believing anything is possible and whatever you do never ever give up hope.

I love this quote by Martin Luther King:

‘If you can’t fly then run.

If you can’t run then walk.

If you can’t walk then crawl, but whatever you do you have to keep moving.”

Right now I would be lying if I didn’t say I feel physically and mentally knocked down by this illness, but I’m trying to move with it and keep changing my perspective. I am just in a new and temporary position/situation, I will take it lying down (literally), but I will roll over and look at the stars until the next phase begins. I’ll do my best to find a positive in all these challenging situations and I WILL get through these days. They are the stepping stones to my future, my destiny and to better health. I can still breathe, see and laugh. I can feel loved by my family and friends and although I can’t currently dance with my feet, I can still dance in my dreams, and thats something right?

I’ll be back soon with info on my treatment and until then remember to make the most of everyday, make it count and remember life isn’t what comes to you, its what you bring to it.

Much love always, Chantelle  xXx

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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!

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.

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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.


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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