Our Lyme Disease Story
I am writing our story in the hope it may help someone else. It all began in 2005 when my two youngest children, both girls, were aged 8 and 9 years old. They both began to get vague ailments and illnesses. The 8 year old, Leah, had flu-like symptoms and a bad throat which came and went, one week ill, then ok again for six weeks or so. She constantly felt sick and was finally diagnosed as having glandular fever. I was told that it can come and go for a long time.
Unfortunately, the intervals between being well and unwell became shorter and shorter until she could hardly get out of bed. This meant several visits from the welfare officer concerned with the amount of school Leah was missing (as if I wasn’t worried and concerned myself!).
Around the same time my 9 year old, Amy, was very pale, bloated and extremely tired, but still managing to go to school. Because we had health insurance with my husband’s work I was able to insist they get tested for everything, but nothing showed up, apart from Leah’s glandular fever.
Time went by and Amy seemed to pick up again, but Leah continued to be very fatigued. Sometimes she could get into school, but more often than not I would get a call to pick her up; she would then be ill for several weeks, and then be able to just about go in to school again, and so it went on
We spent three years of returning to the private paediatrician (my husband had health insurance from work) as well as vitamins, natural remedies, sugar free, wheat free, dairy free diet etc., to be constantly reassured it was indeed glandular fever.
Because of Amy's vague but uncomfortable symptoms I took her along for check-up too, after being told by our completely useless GP that she was being lazy, only to be told that she just had an immature immune system and that she would grow out of it as she got older.
We just tried to get on with life, and I am sure people thought I was a fusspot and the girls were malingerers.
In March 2008 Leah had another one of her crashes, but this time it was much more severe and it didn't ease up. I didn't know what to do or where to go so I rang the paediatrician she'd been seeing for the last three years, crying to him saying that this is not right, that there must be something else going on, but he just told me that Leah’s glandular fever was now chronic fatigue and that he couldn’t help me anymore. I wept, and wondered how all of this was ever going to end.
By now Leah was missing so much school, and I was sure they didn’t really believe that Leah was really ill, but at least the so-called chronic fatigue diagnosis gave a name for her symptoms and, until I could find out what was really wrong with her, I was able to glean valuable info from chronic fatigue websites regarding Leah's rights to be educated via home tuition. I refused to get a private tutor after all the grief they'd given me, with no help or support whatsoever, and I knew that if I went for private tuition, I would lose all contact with the local education authority, as if they never existed.
It may not come as a surprise to know that all went quiet once I'd told them that they were legally obliged to provide home tuition. Suddenly the visits from the welfare officers stopped along with the letters threatening to take me to court. (It subsequently took 14 months before they did sort out a tutor to come to the home.)
As Leah was so poorly by then, her education paled into insignificance. I was more concerned with her survival, as she was getting worse every week with new symptoms building up and up.
I knew I had to find the cause of this chronic fatigue, or M.E. as it is also called. I always believed that C.F. or M.E. is a set of symptoms caused by an illness; I just didn’t know what the hell this illness was.
In the same year of 2008, Amy, who was now 12, started looking very pale again, with black circles under her eyes; she complained of continuous severe headaches and looked dreadful; she tried to keep up with all of her friends, whereas Leah had given up on that (this is another aspect of fatigue - you can’t be bothered with people, then they give up on you and contact is lost). She also said she could hear muffled shouting just before falling asleep; she used to randomly fall asleep in the day, and then came out in pink patches.
The doctor said it was probably an allergy but because of the private insurance, I asked for a referral for a brain scan, which came back clear. At the follow-up consultation we were told it was probably a viral infection, and because Amy seemed to recover from it we left it at that. Amy carried on, uncomplaining as ever, but remained pale and tired, regularly missing school.
I now had to find another (private) paediatrician for Leah, which was easy as I was paying. I always wonder what chance I would have had, had I not had private insurance.
He did the usual blood and physical tests, which showed up nothing as usual, which in turn led to a referral for Leah to a so-called top children’s professor in London specialising in youngsters with chronic fatigue. I don’t know what I expected, but was devastated when she told Leah that she should go on antidepressants, have therapy to learn to live with her problems, and to exercise more!! Turns out she was a psychologist. I was fuming and it was at this point that Leah somehow found the energy to break down and sob.
My poor baby. I reassured her that whatever this thing is, and whatever it takes I am going to get her well again, I am going to find out how to beat it, and will never give up on her or accept what any of these idiot doctors have said .There is nothing worse than feeling so unwell that not only can you not find out the cause, but you're also not believed.
In August 2008, out of desperation we decided, as a last resort and against Leah’s wishes (all she could do was just about lie in bed all day) to go to Iran (my husband is Iranian) to see my brother-in-law, who is a doctor. He kindly arranged for Leah to have every test possible that they knew of.
They all came back negative of course, and this started to drive me mad, I thought our options were running out, especially when one of the consultants suggested antidepressants too. There I was, with my head covered in the compulsory headscarf, yelling tearfully at my brother-in-law in the middle of the hospital that Leah certainly did not need antidepressants and what the hell was going on with the whole of the medical profession at home, and now abroad.
They did, however, on the day before our flight home, find a mass in her liver, which would need further investigation when we got back; this was devastating, and I thought that this was now the beginning of the end and possibly the reason for all of Leah’s symptoms.
The effort of forcing Leah to fly to another country and to attend so many hospital appointments when she had no strength, left her unable to move; by the end of the visit we had to carry her everywhere. She had to be lifted on and off the toilet; I slept beside her, washed her, cut up her food etc. We then had to buy a wheelchair out there to get her back home.
By now I could hear every bone in all of her joints crack every time she moved; she was nauseous constantly, so much so that her mouth watered the whole time. I had no idea what was happening but I was getting scared and she was very tearful and frightened.
She was booked into King’s College Hospital for a CT scan on her liver, and we were relieved beyond compare to find out that the mass was a benign adenoma, like a birth mark, which they now check every six months as it is slowly growing. This, however, had nothing to do with her symptoms, and staff there were as baffled as us as to the cause of her symptoms.
That year came and went, with me spending all my time with my poor girl, reassuring her that she would get better and that everything will be alright.
My Mum used to come and stay with the girls if Hubby and I went out, or I would take them to Mum’s just for a change of scenery for them and to see the outside of the house. By now I was on the brink of tears constantly, with them spilling out in the most embarrassing of places. I was in limbo with a massive weight on my shoulders; how could I go out and try to enjoy myself when my girls were suffering with no end in sight?
In the new year of 2009 I searched the internet for everything I could think of, I put in every symptom, then cross checked it off my list, which I'd done many times before; it was never ending. By February I'd come to the conclusion we would have to go abroad again and find someone somewhere to believe them and test for what hadn't already been tested for, though I didn't know what that was. By now Amy was getting sore throats, diarrhoea, could hardly walk further than a few metres and couldn't keep up with her friends. I had to attend meetings at the school to explain why Amy couldn't manage normal things, couldn’t do P.E., had to have days off etc., which didn’t go down too well. This was turning into a surreal nightmare.
I was on the laptop one day, as usual, and decided to simply type in 'clinics in UK that treat chronic fatigue'. All the usual came up, like vitamin C treatment and massage, light treatment etc. I wasn't interested in these and had tried most of them, I needed somewhere to test properly for everything, to find that thing that had continually been missed, then I noticed an unremarkable ad that looked like all the others, that could have easily been overlooked, but it said they did 'extensive testing and treatment' for chronic fatigue.
It was the extensive testing bit that interested me. They were based in Hertfordshire, only 70 miles away, We had nothing to lose, so I gave them a ring and explained that my youngest daughter had been ill for four years, had been diagnosed with C.F. and was getting worse and worse, and the other daughter was not well either but with totally different symptoms.
I made the appointment around a week later for both the girls and explained everything that I could remember to the doctor from the beginning of their illness.
The doctor asked if they had ever had a rash in the shape of a ring and I said no, except that in around 2003 Leah had been diagnosed with ringworm, which started on her leg then went all over her back.
The girls then had about 12 vials of blood taken each, and had a urine test and a stool test each to do at home over three days, which had to be sent back by post. We waited for around three to four weeks for the results (I was told that some had been sent to the USA) and in May 2009 the results came back positive for Lyme Disease for both of them!
I was shocked that I finally had a diagnosis...I actually had a diagnosis!! A horrible diagnosis, but at least now we could begin the fight.
I thought back to when I used to scour the internet looking for an answer and I remembered I'd actually read about Lyme but didn't think it relevant, mainly because the first symptoms that are mentioned up in most articles are meningitis and heart failure, and my girls didn't have these symptoms. It seemed too far-fetched, and not one of the many doctors we'd seen had ever mentioned it, plus I didn't know they'd been bitten by a tick, which is the way people get infected.
After the results, treatment started in earnest, and we paid for it all. Our insurers only use certain doctors and hospitals on their list, and this clinic wasn't on there. We were able to pay; we hadn't been on holidays with the girls for years, so that was part of the funding, the rest we just had to find.
One of the first things I did after getting the diagnosis was to write to the many paediatricians and that damn psychologist to tell them of the girls’ results and suggest that they perhaps bear this in mind in case another child comes along with mysterious varied symptoms which could be Lyme. I said I would be happy to help if they wanted more info and gave them the address of the lab in the USA where the proper tests are done, but guess what? Not one of those so-called experts even had the decency to reply. I was amazed that as professionals they were not at least a little bit interested; they certainly should have been.
Treatment began immediately with several oral antibiotics which my GP reluctantly agreed to supply on prescription, but there were endless supplements, antifungal which are essential to treat the fungal candida caused by excessive antibiotics which can cause chronic fatigue in itself and make you ill; they also were put on a completely natural diet, which meant cooking everything from scratch three times a day, no rubbish or treats.
After six months there was no improvement, which was disappointing.
By now Amy was too ill to attend school, and she was beginning to suffer symptoms of severe depression. I didn’t know if it was connected to the episode she had when she had to have the CT scan, and whether it is related to LYME. She needed antidepressants, which helped enormously once they kicked in, and by now I'd finally got home tuition for both girls for a couple of hours per week.
Because they'd been ill for so long, their treatment was going to take a long time, and Lyme disease is notoriously difficult to get rid of and was proving so in the girls. I actually doubted if this treatment was even going to work, but there was nowhere else to go.
I just had to believe the Lyme doctor when she told me she would get them well again. I'd never had anyone tell me that in the last four years.
After about a year it was decided that even though most of their patients get a good response, the girls weren't; apparently the longer you've had the infection the deeper it buries itself in your body, hiding away and changing form. They were put on an IV drip of antibiotics daily for six weeks plus antioxidants and vitamins. This meant staying in a hotel nearby as it was too far too keep travelling and they felt too ill.
After around a year of no improvement the girls were given tummy injections of immunoglobin to boost their own immune system - they administered these themselves - then more IV of antibiotics. Leah had been in a wheelchair for over a year now and I'd had a chair lift installed for both of them to get up to bed. Amy had Lyme arthritis in her knee and hip joints.
I slept with Leah and had done so for the last few years in case she needed the loo in the night, and had to bath her and wash her hair because she couldn’t manage it. It broke my heart. Their lives were being wasted and they were suffering; I was beginning to doubt my belief that they would ever get well.
In 2010 it was decided that Leah would have to have her tonsils out as they were huge and infected and this certainly wasn't helping her nausea. We went private (hubby's insurance) to Harley Street, no less, only for the surgeon to ask if Leah had got Lyme because we'd been to the USA, which the girls never have. The ignorance is frightening.
Time went by with home tuition, regular journeys to Hertfordshire, trying different things: new antibiotics; vitamin D injections because they weren’t going out in the sun (they hated the heat); sauna wraps to increase body temperature (to fight infection), which they also hated; getting Leah to stand for a few minutes each day, then walking round the garden.
By around 2011 things very slowly started to improve. It’s hard to tell when because it was so gradual and then there would be a step back, but I noticed Leah started to talk a little, then she would mention the weather outside, and I thought Yes! She’s taking an interest. The nausea was still bad so she was put on antifungal nasal rinses as well as tablets and liquids, with no sugar allowed in any form, which seemed to improve her after about two months.
Amy started to be able to walk upstairs a little more easily and they started to go into school for a couple of hours per week in learning support. Leah had to have physio because her legs had become wasted, and standing and moving caused her to be completely puffed, with her heart pounding because her body was just not used to moving.
The girls started going into school more and more, which enabled Amy to get her five GCSEs which would get her into Level 2 in college. We were just hoping that by then she would be well enough to attend.
2012 came and the improvement continued. Leah had to force herself to keep moving and it made her stronger. Amy began to see her friends again and they both were going into school for a couple of hours most days. It was then time for Amy to start college; luckily the full time course was only three days per week.
I would say now that Leah is the one who's pretty much recovered, but surprisingly Amy is still struggling a little. It’s now January 2013 and Amy has just had more Lyme tests done, which we are still waiting the results of; she tries her best, goes to college and goes out, but she is still tired and pale although she never moans about it. I'm determined she too will be as well as Leah is now. Phew.....
Everything was pretty ok regarding Amy and Leah for a while, then around May/June 2013 Leah had the odd bout of vomiting, which she put down to some dodgy duck from the local Chinese restaurant. She would be ok then have the shivers and lose her appetite then be ok again.
We went to Benidorm in August that year and she became more unwell out there by not wanting to eat and feeling sick and losing quite a bit of weight quite quickly.
When we came home I took her to the GP, who ordered some blood tests, but before they came back she woke up next morning with her heart racing and feeling really unwell.
I could not get a GP appointment so decided to take her (perhaps wrongly) to the place in Hertfordshire that had treated her Lyme. We booked into a hotel there. They said she obviously had an infection as her heart was racing and she was very weak. They did loads of tests for everything, but before they came back I had to call an ambulance to our hotel room at 2 am that night as Leah had collapsed whist vomiting in the in the bathroom; she was soaked with sweat and started to come out in a rash. The ambulance came and she was admitted to Watford General to the AAU where they instantly put her on a drip, heart monitor, oxygen and about three or four different antibiotics. They were fantastic, but I really didn't know if Leah would survive.
The fear was causing adrenaline to rush through me non-stop. My thoughts of what may happen and the scenarios I was envisaging were terrifying me.
Despite all the illnesses she'd been through, this was really frightening as it was so acute and severe. The tests results by then had come back inconclusive, but by now Leah had sepsis. She was transferred to an isolation ward because no one knew if she had anything contagious. As we were 70 miles from home they let me sleep on the floor in the room with her.
All that week I was watching her getting more gaunt every day, not being able to eat a thing, vomiting up nothing. I was praying the antibiotics would work, assuming this thing was bacterial. Listening to the heart machine bleeping every time her heart rate rose dangerously high made me shudder day and night. I didn't know what to say to Leah and we couldn't believe things had come to this after all that she and her sister had already been through.
I started feeling ill myself so they gave me antibiotics as a precaution. My husband drove up sobbing, then on to the hotel where we'd been staying to pick up our stuff and check out. Leah's heart rate finally calmed down after a week of being wired up to everything. They took her off all the machines and stopped the drips. They then scanned her heart to make sure it wasn't damaged, which thank goodness it wasn't.
We went home with Leah at 16 years old weighing just over five-and-a-half stone. Two days after coming home her heart began to race again, which made my legs go weak - I felt they'd stopped the antibiotics too soon for her, the minute she felt a bit better, anyway. She had to go on oral antibiotics for two weeks, which seemed to do the trick.
She still was unable to eat or even want liquid high protein shakes when I noticed that she was looking pretty yellow. I kept feeling myself going weak and tingly which came and went, so I ignored it. I contacted King’s College Hospital who told me to bring her in (she's already an outpatient there because of the adenoma on her liver), and her Gamma GT (liver function test) was over 400. It should be between 6 and 40 something. No wonder she was yellow, couldn’t eat and was nauseous. They assured me that, given time, gradually her liver would recover.
Leah had been due to start her Level 3 course at college, which had to be postponed to the following year. That made her cry. The next nine months were spent with her just recovering, building up some weight, plenty of proper healthy (small) meals and gentle walking.
Fast forward to 2014 and she was well enough to start college, which she loves; she found a part time job at the local kennels. Now in 2015 she has almost completed the first year, has been away with the college to Wales and is booked to go to South Africa this October (she's doing an animal management course and wants to be a vet); she has had her vaccinations for it (which I was dreading) and has been thriving ever since and is doing really well. I believe Leah's immune system is weak because of the battering it got from Lyme.
After lots of negative tests, it turned out that my strange symptoms, which got progressively worse - to the point where I could hardly move or speak - were post-traumatic stress and anxiety. I was put on antidepressants (reluctantly, as I did not believe that was what was wrong with me). They have helped my symptoms almost disappear, so at the moment all is pretty good, but my fingers and everything else will be crossed. Always.
With Amy, she has a boyfriend, and has a part time job working from home. She did try front-of-house at a new bar bistro and loved it, but couldn't cope with the hours or stress. She became absolutely covered in eczema and her hair started falling out, so she had to give it up. She has Pre-menstrual dysphoric disorder (PMDD), which is a severe form of PMS for which she is now being treated.
The girls are the best they've been but I truly believe the Lyme has damaged their immune system, their energy, their constitution. Luckily it hasn't destroyed their determination and sense of humour and I enjoy every single day I have the privilege of being with them.
Amy & Leah