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

Advertisements

2015 begins and the drama continues…

January has been a complete whirlwind; an unpredictable, rapid and destructive 4 weeks! It has been a challenge and not quite the positive start to a new year that I had hoped. For now, I have given up on the of idea of being able to predict how I will feel in the future, when these days I can’t be of sure how I will feel from the start to end of just one day! This is a complex illness, and needs to be un-ravelled bit by bit. I am always conscious of the bigger picture, but I am aware of the multi layer approach to healing for the long term benefits and chances of remission.

I began the new year with a totally un-invited bout of cold and flu symptoms which persevered for approximately two weeks. It is surprising how much this can knock you down when your body is already fighting so much. I had to halt taking my antibiotics as a die-off on top of this would have just been an overload for my immune system. It was mentally disappointing, as I know how the current infections will take any opportunity to thrive whilst I am not actively treating them with antibiotics. I followed Doctor orders and also kept in mind the words I often heard from my Mum growing up; “Feed a cold and starve a bug”! This was also particularly important as over the past 6 weeks I had began loosing weight again, regardless of consciously trying to increasing my calorie intake. Its hard to know exactly what is causing this, but it is something we are monitoring closely.
On top of this I have been trying to cure another mysterous rash which has covered my chest and back. Four different prescriptions creams later and more baffled GP’s the rash is still here!

Once the cold symptoms were clearing, I started a combination of new medications, Atovaquone (Mepron, Wellvone) and Azithromycin (Zithromax).

Mepron is an antiprotozoal medication that can penetrate the cyst form of Lyme and also treats Babesia. It is a thick, yellow suspension which visually reminds me of poster paint from school art lessons and it is ridiculously expensive. It costs a hefty £500-£600 per bottle, and with this price-tag it has been nicknamed ‘Liquid Gold! Mepron is known to be especially hard on the liver, so supporting this organ with supplements and constant detoxification is key. Not only does this prevent damage, but it also helps to clear my liver pathways, increasing my ability to handle the medication for a longer and more effective time period. This medicine is also absorbed better when taken with a fatty food, so a tub of organic almond butter and a spoon has been close to hand!

IMG_6718

Zithromax is prescribed for the treatment of acute bacterial infections. It is a broad-spectrum antibiotic, meaning it is active against a wide range of bacteria and thus being a good antibiotic to try as I have multiple tick-borne infections. A combination of Zithromax and Mepron is known as an effective Lyme and co-infeciton treatment protocol, and I am hoping I get some successful results from this.

The herx reaction from this combination has not been easy so far, but it is bearable. I bare in mind that when treating, there is a level of ‘No pain without gain’ to consider too. I ensure I get regular blood tests to measure liver and kidney functions and other important levels in my body. Unfortunately on this occasion Januarys test results went ‘missing’. I am non the wiser as to where or how this happened, but I will attend another blood draw in the hope that I can have some numbers on paper soon.

“They never said it was going to be easy, but I am hoping it is going to be totally worth it”.

perseverance

New Year, New Meds!

I am happy to say I finally attended my first consultation at GMA (Gordon Medical Associates) yesterday. Armed with pen and paper and my ever growing medical file, I managed to keep my concentration for two hours! I had to discuss the last 15 months of illness; not easy when the list of symptoms is probably longer than Santa’s naughty list!

It was refreshing to talk to a Lyme literate doctor who is used to treating patients with this illness and who has wealth of knowledge and understanding of the complexities that surround not only Lyme, but the co-infections too.
This disease is pure evil, fact!  There is not one part of my body that hasn’t been affected by it in some way. A symptom lottery is how I explain my day to day pain, because I never know how I am gonna feel. It can be anything from burning skin, tremors and nausea, to chest pains and bladder dysfunction and this is just to name a mere few!
So you may be wondering, what is my plan to try and fight this beast?
Well, here is the complicated part! Not only do I have Lyme, but I also have some  co-infections too. The Co’s I have are called Bartonella and Babesiosis, both of which are also tick-borne diseases, so it’s true bad luck does come in threes! Each of these bacteria needs different types of antibiotics and herbal supplements in order to effectively try and rid them from my body and lower the chances of me relapsing years down the line.
Over the next few days I introduce a two week course of three different oral prescription antibiotics, to start to treat the Bartonella. These are Clarithromycin, Rifampin and Diflucan. I have done a lot of research on different meds and Rifampin is the one that causes many difficult herx reactions. This will mean an  increase of symptoms and the severity  of them, maybe new symptoms too. It also has a reputation for causing extremes in mood and mental state, so looks like I will be hibernating in this hotel room till the worst is over, don’t want to scare away the other humans in the hotel!
In addition to the antibiotics, I have also started various new natural supplements. However hippy you might think this sounds, it’s a must in order to support the bodies organs and my immune system, which has become suppressed through this illness. I will now be taking Ox Bile to support my liver, Itires to help my Lymphatics, Cranstat Extra for my urinary tract and Magnesium for my bowels. With out going into detail on my symptoms, especially the latter, you can take my word I need to take these herbals! I will also continue to take the supplements I started a month ago, which are Chlorella, Co Enzyme Q10,  Allicin, Serrapeptase, B12, D3, Krill Oil, Vitamin C and a multivitamin. In addition I take Omeprazole to protect my stomach and help with the acid and a good probiotic. Both of which are important especially when taking a lot of antibiotics. With all these pills and potions I must detox with my Epsom salt baths and lemon water too, everything helps, trust me!
After two weeks of the oral antibiotics, I will then introduce the intravenous antibiotics to begin to treat the Lyme. This will be for a minimum of four weeks to start with, all dependant on how my body reacts. This may be combined with some IV vitamins too. Everything has to be added slowly so that body is not shocked by the sudden intake of medicines.
Besides all the medicine,  I have also had to start a gluten and sugar free diet, with minimum dairy intake… This is vital, as the bacteria feed off those food types and I need to make my body as natural as possible. Its neither going to be fun or easy, but I am sure after a few weeks I will be settled into a routine. It’s not like I have a choice in the matter so I am just going to have to crack on with it!
Last but not least, I would like to wish everyone a HAPPY NEW YEAR!
Life can change in an instant, so live for now, enjoy each day and worry about the future when it happens. Be happy, healthy and go and make your dreams come true. Smile, love and laugh…you have one life, live it.
Best wishes to you all for 2014, may this be the best year yet and more.
Chantelle x
image