My sister, Keriann, is a chiropractor in South Africa, and is always on the lookout for things that might help ease my M.E symptoms. She forwards me articles and information when she finds something that might be useful, and I am always grateful to her when she does. I know that they stem from her deep desire to see me get better. Or, at very least, better than I am at present. She lives so far away, and she isn’t able to help me on a practical daily basis (which she wishes she could), so it’s her way of trying to make a difference in my life.
My sister has a patient that came to see her last year, a few months before our trip back to South Africa. He suffers from M.E. and my sister mentioned that I have it too. He told her about a doctor in Johannesburg that he’d been to see, and that her treatment had changed his symptoms for the better. He had been referred to the doctor by another M.E patient of hers, who improved so significantly that he ran a marathon late last year! So, of course, my sister asked him for the details of this doctor, and she arranged two appointments for me, during the period that I was going to be in Johannesburg.
Let me give some background on this doctor, to better illustrate her approach and treatment protocol. Dr Cecile Jadin is a Belgian doctor who has practiced in South Africa for two decades now. She is the daughter of the late Professor J. B. Jadin, a colleague and friend of Charles Nicolle who won the Nobel Prize for Medicine in 1936. Professor Jadin studied intracellular bacterial infections, and was considered an authority on rickettsioses and neo-rickettsioses, on malaria, leishmaniasis and various other organisms. He worked at the Pasteur Institute in Paris and Tunisia. In the mid-1980’s, while practicing in South Africa, a friend of Dr Cecile Jadin’s was suddenly struck down with a debilitating condition, later diagnosed as M.E. Based on her knowledge of her father’s work, Dr Jadin wondered whether her friend might have a rickettsial infection. Blood tests were done in South Africa, but the results were negative. The test used was the Weil-Felix test, which was still the test of choice for a lot of pathology labs, despite having been shown to lack both sensitivity and specificity (CDC, 1989). Dr Jadin therefore decided to send a sample of the blood to her father’s laboratory in Belgium for testing, using his Micro-agglutination test (Giroud method). The result came back positive! The blood showed antibodies for two different Rickettsia strains. The infection was successfully treated with tetracycline, and her friend’s symptoms improved significantly in a very short space of time. This result led Dr Jadin to wonder whether there were more people diagnosed with M.E (or even fibromyalgia) who might also have their symptoms partially or even fully explained by bacterial infection. And so, her practice was born. Over the years Dr Jadin’s approach has been challenged on various fronts, but the fact that so many of her referrals are a result of satisfied patients recommending her, I decided that it was worth seeing what she had to offer.
My first appointment took place on the 14th October 2011, the day after we’d arrived in Johannesburg. My husband drove us up to her practice on the northern outskirts of the city, and I was enchanted by the peaceful surroundings. We had to wait almost an hour for my appointment, but finally I was ushered in. Dr Jadin has a heavy French accent, and I struggled at times to understand her questions and comments. She had asked me to bring a full set of blood results with me from the UK, which my lovely GP has furnished me with prior to our trip. She looked over my medical history, scanned the blood results, then took me to a side room to weigh me, take my vitals (blood pressure, temperature, etc) and feel my lymph nodes. My throat was particularly raw that day with my lymph nodes the size of walnuts. She then checked over my skin to look for any obvious signs of a bacterial infection. I had a patch of contact dermatitis (which I get on occasion) on my belly which she tutted over, commenting that it might be bilharzia and that blood tests would tell us more. Once back at her desk, she said that she would recommend a panel of blood tests be done, to see whether I had any antibodies indicating a bacterial infection. These blood tests were not cheap (almost £750!), but Chris and I decided that it would be worth the money if they provided us with some answers. So, we took a deep breath, and headed to the pathology lab to have my blood drawn and the testing started. I had the most complete set of blood work done that I have ever had in my life. Every aspect of my blood chemistry was looked at including inflammatory markers, and liver and thyroid function. I was also tested for antibodies to Mycoplasma, Chlamydia Pneumoniae, Chlamydia Trachomatis, Toxoplasma, Borrelia (Lyme Disease), Helicobacter Pylori, Brucella, Coxiella Burnetti (Q Fever), Bilharzia and Rickettsiosis!
It was another week before my next (and final) appointment with Dr Jadin. It’s strange, but I knew with certainty that I would test positive for a rickettsial infection. I suppose it made a kind of sense to me, as my symptoms had first started 3 weeks after a trip to South Africa, albeit triggered by a dodgy tummy that I picked up at work. And so, when I walked into Dr Jadin’s office on the 21st October 2011, I was fully prepared for the results that she gave me…
My blood had tested positive for the following antibodies:
- Mycoplasma pneumonia IgG,
- Chlamydia pneumoniae IgA (acute) & IgG (chronic)
- Rickettsia Conorii (spotted fever).
In addition to the bacterial antibodies, my iron tested slightly low with “results suggestive of depleted iron stores in the presence of an acute phase response/non-specific tissue damage” and my immunoglobulins (IgE) were raised.
So, you may ask, WHAT IS RICKETTSIA? In the week leading up to the results, I did some research into the various bacteria I was tested for, just so I knew a little more about each of them. Rickettsial infection was first discovered in 1909 as Rocky Mountain Spotted Fever. Rickettsia bacteria can be found in ticks, lice, fleas, mites, meat, milk, faeces and dust. The bacteria spread in the bloodstream and infect the lining of the vessels. They then grow and multiply until the cell they’re in bursts and releases them black into the blood stream, to spread even further. The bacteria can last for a very long time in your system by doing this, and can invade various organs and lymphatic tissue. Dr Jadin, therefore, postulates that the Rickettsial infection can cause a myriad of symptoms associated with M.E.
“Rickettsia release into the bloodstream three types of endtoxins, which have different effects. All or some of these endotoxins may produce symptoms. First, endocytokines that will cause inflammation and pain; second, neurocytokines that would be the origin of neurological symptoms such as demyelination found in MS patients, and psychological symptoms such as depression, anxiety, troubled behaviour.” (CL Jadin, 1999)
So, after 4 years of having M.E, I had another piece to the puzzle. Dr Jadin started me on a treatment regime, which included one week of treatment per month, over three consecutive months. I completed the three course of treatment just before Christmas. I obtained all the medications whilst in South Africa to complete the course.
- In all three cycles of treatment I am prescribed the following:
- Nexiam 20mg – before breakfast.
- Neurobion (Vitamin B Complex) – with breakfast.
- Lacteol (Probiflora) – 2 tablets with lunch.
- First cycle:
- Doxitab 100mg – 1 tablet with breakfast and dinner.
- Austell-Ciprofloxacin 500mg – 1 tablet with breakfast and dinner.
- Second cycle:
- Cyclimycin 100mg – 1 tablet with breakfast and dinner.
- Purmycin – 2 tablets with breakfast and dinner.
- Third cycle:
- Tetralysal 300mg – 1 tablet with breakfast and dinner.
- Metazol 200mg – 4 tablets with breakfast and dinner.
I was also told to make some permanent lifestyle changes. They include avoiding caffeine, sugar (including honey, fruit juice and dried fruit), aspartame sweetener, unpasteurized dairy, raw meat and fish, and alcohol. I have also been advised to avoid supplements that include magnesium, glutamate, chromium, and vitamins A, D, E and K.
After the first and third course of treatment, I experienced a period of 4 – 5 days where my symptoms were significantly better – in fact, my energy levels were akin to those I experienced during my pregnancy. The improvements allowed me to hope that I might see sustained improvement like other of Dr Jadin’s patients. My hope was premature, however, and I slowly declined back to where I had started with my symptoms. I kept telling myself not to hope for too much, as that would only lead to disappointment. But it’s never as easy as that, is it?! Those brief glimpses at what my life could be like were so tantalising. So vivid. If only…
As you will know from reading my earlier blog post “ Been Too Daunted To Post (part 2)”, my condition worsened dramatically in January 2012, to the point where I am now mostly bed bound. My husband suggested that we contact Dr Jadin again by email, to see what she might suggest that would help. We received a very brief email in reply (much to our annoyance), indicating a further 3 months worth of medications, and asking that we pay €90 for the “consultation”. There had been no discussion about what might have caused the worsening symptoms, and no discussion about any other approach than this new course of medication. Due to my imminent unemployment, we do not have the financial resources to purchase our medication privately, so being asked to pay for a prescription that we weren’t going to be using seemed a bit of a cheek. After some emailing back and forth, my husband managed to negotiate that we pay just over €30 instead.
I went to see my (very patient) GP, and he agreed to assist me with one last ditch effort at treating my M.E. with antibiotics, as prescribed by Dr Jadin. He highlighted that it is not an accepted form of treatment here in the UK, but that he’d support me by prescribing a single week of medication. My GP is an amazing man, who tries to remain open-minded about every new treatment approach I bring him – I dread the day he retires (as he’s pretty long-in-the-tooth already) as who knows if my next GP will be as understanding! So, on Sunday I started my final course of the antibiotic cocktail, that included:
- Doxycycline 100mg – 1 tablet with breakfast and dinner.
- Ciprofloxacin 500mg – 1 tablet with breakfast and dinner.
- Omeprazole 20mg – before breakfast.
- Vitamin B Complex – 1 tablet with breakfast and dinner
- Vitamin C 500mg – 1 tablet with breakfast and dinner
- Folic Acid – 1 tablet with breakfast and dinner
- Probiotic – with lunch.
So far, I haven’t felt much improvement. Today is my first “brain fog”-free day in weeks, so perhaps that is a sign that the medicines are helping. I’m reserving judgement, however, and will post again once the treatment is complete.
I sometimes wonder, collectively, how much we M.E. patients spend per year (of our own money, I mean) chasing the mirage. If everyone else is like me, so worried that the treatment you don’t try is the one that just might have worked, then I’m sure that the sums of money spent must be substantial! For good or bad, it’s the financial constraints imposed on us by the M.E (limited , if any, capacity for work) that limits how much we spend on our search for answers. Oh well.
- Dr Cecile Jadin’s website – not the easiest to read, let me warn you.
- Research Article - Multiple co-infections (Mycoplasma, Chlamydia, human herpes virus-6) in blood of chronic fatigue syndrome patients: association with signs and symptoms