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.
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!!