Archive for Travel

Dr Cecile Jadin

Posted in Long-Term Illness, My Thoughts, Treatment with tags , , , on 01/03/2012 by Sam Sadie

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.


Been Too Daunted To Post (part 2)

Posted in Long-Term Illness, My Thoughts with tags , , , on 22/02/2012 by Sam Sadie

We had originally planned to put Ethan in nursery 3 days a week, from 8:30am – 2:30pm. I was going to have every Wednesday off work, and my husband would work flexibly so as to stay home every Friday with Ethan. What a pipe dream that seems in retrospect. It was based on the hope that my energy levels would remain at the levels I experienced during pregnancy, but I should have known better than that. My specialist warned me not to expect my improved symptoms to last, but I continued to hope. Silly, silly me. After going off on long-term sick leave in March 2011, we quickly realised that there was just no way I could cope with having my son home with me alone. It was too exhausting. So, we clutched our wallets closer, and started Ethan in nursery full-time. Gulp! Childcare costs are just ludicrous here in the UK – we pay more for Ethan’s childcare than we do for our mortgage! And none of the benefits offered to disabled people even remotely cover the cost. While able-bodies people can procreate at will, those of us with disabilities who can’t be stay-at-home parents, have to wait until it’s affordable to have a second (or third) child. It just seems so unfair. Sorry, that’s my rant over…my apologies for getting side-tracked!!

A year down the line, and Ethan is still in nursery full-time. He adores going, and there are a couple of the care workers there that he is completely besotted with. I’m certain that he sees them as an extension of our family. I am constantly wracked by guilt that he is in nursery 10 hours a day, 5 days a week. He sees the nursery staff more than he sees either Chris or myself. So, although I’m glad that he’s so happy there, I constantly wish that things could be different. I suspect that firmly tied to the guilt I feel, is a hefty dose of jealously too. I am jealous of the time he spends away from me. He has a whole piece of his life that I’m not a part of. It cuts me more deeply, I think, than anyone realises. Whether I should or not, I take it as a failure on my part. That I’m not able to be the mother he deserves. The sensible voice in my head tells me that I shouldn’t take personally, a situation that I have no control over. But, that sensible voice is faint and far away. A whisper against the shouting of my heart. I would give anything to have him home with me more. I’d give a leg, maybe even two.

In May 2011, my GP referred me back to my local ME/CFS specialist clinic, to see whether they could offer any advice that could improve my symptoms. I decided to do my research, and arrive armed with questions and treatments that I would like to consider trying. I chose to drive myself to the appointment (so that my husband wouldn’t need take more time off work), and what a disaster that turned into. I was suffering with “brain fog” that day, and got horribly lost on the way. I left in plenty of time as I hate being late for things, but it wasn’t early enough, as things turned out. I phoned to say I was on my way, but had gotten lost, and the receptionist was lovely. She told me to calm down (I was nearly in tears by that stage), and that I’d be seen whenever I arrived. After a harrowing drive trying to retrace my steps, I arrived. I was in floods of tears at reception (they must just love frazzled ME/CFS patients), and cried off and on throughout my appointment. It was the most uncontrolled I have ever felt in a public place. And I never want to repeat it ever again.  Sleep was a major issue for me, and I had read that Trazodone is better for sleep disturbances as it is the only drug that induces stage 3 and 4 sleep! Who knew?! Obviously someone did, but clearly not the specialist. Why then, have I been on Citalopram for all these years?? And Zopiclone intermittently?? He agreed to advise my GP to change my meds, and the difference has been incredible. I finally have what could almost be called “refreshing sleep”. I still dream occasionally, but most nights I sleep deeply and wake feeling like I’ve slept. I also discussed LDN (Low Dose Naltrexone) with him, and he agreed to review the literature and advise me at a later date. His later advice was that it is still considered “experimental” for use with ME/CFS patients, and therefore couldn’t endorse its use until there was more evidence. He, yet again, suggested cognitive behavioural therapy (CBT), and yet again failed to provide me with any information about a local practitioner who knows that ME/CFS is a physical condition. So, my appointment basically improved my sleep, but nothing more. I can’t complain though, I’ve achieved far less from my appointments in the past…

I applied for a Blue Badge (disabled parking permit) in the first half of last year, and was turned down by my County Council. This is a common result, sadly, as ME/CFS is seen as a relapsing and remitting condition and therefore does not qualify you automatically for the permit. Of course. In July or August 2011, I decided to try applying for a Disabled Living Allowance at the suggestion of a friend (thank you, Fiona!). She suggested I ask one of the local disability charities to help me fill out the form, as they are more familiar with the sort of information that the government requires, so I’d be less likely to leave out relevant information. What brilliant advice. My husband took me through for an appointment at Disability Huntingdonshire, and a lovely gentlemen patiently listened to my, often rambling and off topic, answers and filled out the form on my behalf. I then had to jump through a series of hoops (including getting a report from my ME specialist) to prove my entitlement, until finally…my application was APPROVED!! I was surprised to be honest. I thought, at very least, I’d have to appeal the decision before having my DLA awarded, so being approved right off the cuff was downright amazing. And, after jumping through even more numerous hoops than for the DLA, I finally convinced Cambridgeshire County Council to issue me with a Blue Badge (though this finally happened at the end of January 2012!). So, I am officially one of the scroungers that you read about so often in the tabloids. Me, and my imaginary illness.

In October 2011, we travelled back to South Africa to visit our families, and more importantly, to allow most of them to meet Ethan for the first time. We were worried about how I’d cope with the demands of travelling, and opted to leave my wheelchair behind, as we were already transporting a pushchair and car seat for Ethan, along with 3 large suitcases and 3 pieces of cabin luggage. It’s amazing how much luggage one toddler requires! Seeing our families was amazing, and watching them with Ethan was just priceless. On my husband’s side, there were four generations of family present in one place at one time which was indescribably beautiful. I feel it more deeply, as on my side, there is only my mother, Ethan’s grandmother. His grandfather has passed, and his great-grandparents have been dead for years. It was a reminder of how much we, and Ethan, miss out on living so far away. While in Johannesburg, I visited a tropical medicine specialist who specialises in patients with M.E. I had a slew of blood tests done, which yielded some interesting results. I’ll cover this in more detail in a later post, as I don’t want it to get lost in this, more narrative, one.

In November 2011, I was contacted by my manager (as I am still on long-term sick leave) to arrange a meeting to discuss my employment. So, we met in December 2011 and again in January 2012. Somewhere in among those meetings, I was seen by the Occupational Health department at work too. I think I need to pause here for a moment to pay tribute to Dr Anne Price, the Occupational Health consultant who has flitted in and out of my life after every relapse, encouraging me and helping me back to work. She is one of those doctors who may not be remarkable in and of themselves, but who touch your life in a remarkable way. She is always so positive and encouraging, and has fought in my corner more times than I can count. She is passionate about her work, and I doubt she will ever receive the recognition she deserves. I raise my metaphorical glass to her.

Human Resources and my manager, both of whom have been so supportive over the years, sat me down in the meetings and told me that the time has come to discuss my continuing employment with the Trust. They asked Dr Price for her opinion, and she said (quite rightly) that I am in no state to resume my duties, and that it really is anybody’s guess when that situation might change. She prepared me for the eventuality that I might be about to lose my job due to my ill-health, and said that she would fully support my application for ill-health retirement. Due to her concise yet conclusive response, HR has started the process of submitting my application for retirement. Unlike some countries (South Africa being one of them), my employer does not decide the merit of my application. My application is sent to the government’s Department for Work and Pensions, who then decide whether I am eligible or not, and if I am eligible, whether I get a full or partial pension. As anyone who follows ME/CFS-related news in the UK will know, the government has a very patchy record with regards to appropriately assessing the needs and entitlements of those of us with fluctuating conditions. So, with that in mind, I’m not counting my chickens just yet. I fully expect to have my application refused.

If my ill-health retirement is approved, then I will meet with my manager to decide a leaving day. If it is unsuccessful, I will meet with my manager and HR to decide on a date for termination of my employment contract on the grounds of ill-health. I lose my job either way, the only difference being whether I receive a pension afterwards. I feel like I am in limbo while the process takes place, powerless to influence or change the outcome. I just want it to be over already, so I can move forward (albeit it metaphorically) with my life. And, so I wait.

From the middle of January 2012, my health has taken a sharp nose dive. I can’t identify a precipitating factor as such (well, no virus anyway), and am putting it down to the “stress” associated with my work situation. It is so disheartening. I have suffered with moderately severe symptoms for a year now, and had just started to accept that this was how things might be indefinitely. And then I got worse. So much worse. I am now almost completely bed bound. I can just about make it to the toilet and back from my bed, by holding onto furniture and walls. I need my husbands help to shower and wash my hair. I hate that I’m reduced to that indignity yet again. I wish everyday that we had a “normal” marriage, where the only reason that my husband would need to touch my body would be for pleasure. Not to bathe me. My ME/CFS has stolen a part of my sensuality that I fear I may never get back. In the wake of necessity, I have lost my feminine mystique. He tells me that he doesn’t mind, and I know that it is true. And the enormity of my husband’s love crushes me. And it gives me wings.