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

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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’!

 

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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