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.