Wash it away

An interview of my friend Katja, done in the spring of 2009. Her name has been changed, but everything else is 100% true.

It's year 2002. Katja has just given birth to her second child and has moved to the first house that she and her partner actually own. She suffers from persistent dizziness, headache, insomnia, brainfog and back pain. But that's how it is with two young children, isn't it?

At just three months the baby is constantly ill. There are ear infections, allergies and difficulty breathing. Katja's firstborn had 17 ear infections before the age of two and she has had recurrent ear infections herself, too. Her adenoids were removed twice: first when she was a baby and again in her teens, after they had grown back as scar tissue. She also had her tonsils removed.

The symptoms of the baby just get worse, however, and at six months she gets ear tubes installed, asthma medications and other medications to prevent infections. Because of the children's severe allergies Katja has to cook several versions of all food. The home has to be vacuumed daily, the floors are scrubbed every week and dusting is done twice a week.

Katja worries about her children and doesn't have time to mind her own symptoms.

"I just remember wondering why I felt so weird all the time and even walking straight was difficult because of the dizziness," Katja says. "I got very exhausted from the smallest effort or walk and my head hurt all the time."

Katja's hair begins to fall off in large lumps, leaving bald patches in her scalp. The doctors cannot figure out the cause.

***

Katja and her partner pay attention to the bathroom ceiling, which is getting full of moldy spots. The house manager isn't interested.

"He just told us to wash it away."

A health inspector is called in as Katja suspects something is wrong with the house. The judgement is grim: the house is full of water damage and mold, thanks to the "DIY" renovations done by the previous tenants. The cupboards on the kitchen have even been built straight on the ground.

The housing cooperative refuses to do anything and the previous tenant doesn't answer the phone. The matter is under litigation for four years. Katja spends long periods of time in an allergy hospital with her younger child. He can hardly digest any food and the antibiotics don't seem to be working. At last the allergy hospital sends a mycologist to inspect the home.

"Some of the samples were so full of mold they couldn't even be examined", Katja says. "All samples exceed the amounts allowed by law by tens of thousands or even hundreds of thousands of times. The hospital had only found mold problems that bad in two homes since 1995."

Renovation is started, but because of financial reasons the family has to live in the house through the whole ordeal. The court process and the renovation lead to more loans amassing. Katja feels completely exhausted, but surely the situation will soon improve.

***

During the night one of Katja's pupils has grown so big that the iris is hardly visible. Even after a visit to an eye clinic the cause remains unclear. In a week the pupil shrinks down, but is still, years later, visibly larger than the other one.

Katja is overcome from severe dizziness and problems with balance. The world seems to be tilting to the left. She can hardly walk upstairs and her head feels pressured. She's constantly cold to the point that her fingers and toes get purple. Sunlight makes her eyes hurt. There are constant infections. Somehow she just has to pull through.

A private neurologists finds defects in Katja's reflexes. An MRI of her head and blood tests can't find anything except for something off in her inner ears, but they run out of money and no more tests are done.

Next year Katja is pregnant again. She's running between the hospital and the courtroom, where she's still sitting five days before giving birth. The family is only able to move out of the apartment a month before the child is born and Katja fears how the mold might have affected her.

The day the baby is born the family finds out they won, but the opponent has appealed. Luckily they at least manage to sell the apartment, as the renovation company has given the work a ten-year warranty. The bed and most textiles have to be thrown away and the five-member family is cramped into a small apartment.

Katja sleeps whenever she gets the chance, which isn't often. The new child is allergic too and soon she again finds herself in the allergy hospital.

***

In 2005 the family finally gets to move into a bigger place, even though it is risky, as the litigation is still in process. Katja has got new neurological symptoms and sees a GP about them. Result:

"He gave me a script for antidepressants and a referral to a psych clinic."

Katja tries different antidepressants, but just gets horrible side effects from all of them. Already very slim, she loses a lot of weight to vomiting caused by citalopram and paroxetine. The doctors react by upping the doses and adding new medications to the mix.

The diagnosis is postnatal depression. The doctors suggest Katja goes to the hospital for medication change together with her baby.

"I was desperate and willing to try anything", Katja recounts. "I just couldn't believe my physical symptoms were caused by depression."

The way she's treated in the hospital couldn't be more rude and condescending. Katja is afraid of other patients and feels totally out of place. The staff is convinced that psychiatric drugs are the solution for everything. When Katja gets out after six weeks she's a zombie from all the drugs.

"Then I actually felt depressed", she says.

***

Katja's ears are blocked and feel pressured. Even her hearing suffers. She's diagnosed with Meniere's disease and tries medications, diets and other treatments without much relief.

Finally in the summer of 2006 the court process is over. Katja's family won. They don't get nearly all of their money back, but it's still a massive relief.

Katja is also happy to get into a job trial at a library. It's only 2-3 days a week, but even that makes her so exhausted that after the workday she goes straight to bed and doesn't have energy for anything else. Her dizziness, balance problems and allergies get worse. After six months Katja finally admits defeat. Later she finds out some of the books were from another library, which was infested with mold.

Katja is too sick to walk even a short distance without her muscles going into cramps and spasms. Her new GP can hardly believe the way she has been treated. A thorax x-ray finds abnormalities in her lungs. Katja gets a referral to a neurologist, but the appointment is cancelled after Katja's psychiatrist convinces the neurologist that she is just depressed.

Katja begins to taper down her psychiatric drugs, which have been of no help. The psychiatrist suggests yet another medication. Desperate, Katja takes up the offer. After completely losing her motor skills from trazodone to the point she can't even sharpen a pen, she switches to venlafaxine. It makes her neurological symptoms much worse and she ends up hooked on an IV in the hospital.

***

"I and my husband decided that no matter what it costs, I have to get better", Katja says. "Best decision I ever made!"

Katja ditches the antidepressants and seeks out the private neurologist's help again. This time there's a more thorough evaluation lasting for six months. The bloodwork reveals high titers against HHV-6 [a herpesvirus connected to neurological diseases] and a complete deficiency of IgG4 antibodies. Even the old head MRIs turn out to have been abnormal.

Katja is referred to the infection clinic of the Helsinki University hospital. Upon arrival she's very ill, only weighs 47 kilos (103 lbs) and is cold all the time. The first two days she spends as an inpatient and gets the first dose of intravenous immunoglobulin or IVIG. She's told she has chronic fatigue syndrome, but has no idea what it means.

"That's when I unfortunately caved in to the antidepressants again, because my psychiatrist was pushing me."

Not surprisingly, the side effects are again horrible. The psychiatrist takes this to mean Katja is on the verge of psychosis. Scared, Katja is soon also on two antipsychotic drugs and too tired to do anything but sleep. One of the infection specialists calls the psychiatrist and finally the antipsychotics are stopped.

"Not surprisingly", she adds, "I felt way better after that."

***

IVIG is one of the most effective and best established treatments for CFS/ME. The infusion, given every three weeks, made Katja feel much better. She also tried other medications like corticosteroids, but they weren't helpful. Nutritional supplements have helped some. Katja has considered antiviral drugs for the HHV-6 infection, which can even be curative, but the treatment would cost tens of thousands of euros, requiring a huge loan.

In May 2008 the IVIG was discontinued against Katja's will, because it's too expensive and hasn't been approved for CFS/ME or IgG subclass deficiency in Finland - the public insurance provider doesn't believe CFS/ME even exists.

Out of the blue most of the infection specialists have begun to consider Katja and other CFS/ME patients, most of whom have severe immune dysfunction and neurological symptoms, just psychiatric cases. Katja was told she'd get better with psychotherapy, going to the gym and wearing special insoles because of her hypermobile joints. No one has ever explained how these would solve the viral infections or the immune deficiencies.

After the IVIG was discontinued Katja tried antifungal drugs, which resulted in some improvement. A seven-month course of the antibiotic roxithromycin helped her even more. The benefits of the antibiotics have mostly remained, even though they were stopped in early 2009.

It is unclear why the antibiotics helped her, as they don't work against HHV-6 or other viruses. Chronic bacterial infections are common in CFS/ME, but the doctors believe the treatment worked by reducing the normal bacterial load of Katja's body, to which her immune system overreacts.

***

So the direction is towards the better, but Katja still have problems to solve. She now suffers from bothersome pains, which were diagnosed as fibromyalgia, though she doesn't believe it is that. CFS/ME can cause pain, sometimes extremely severe, even in the absence of fibromyalgia.

She also has severe problems sleeping and only gets a few hours of sleep a night. A sleep study found out she awakens up to 15 times an hour. Katja has tried medications for both sleep and pain, but their benefits haven't outweighed the side effects by much. Most drugs make her very drowsy, yet don't make her sleep.

Most recently Katja was found to have extremely low estrogen levels, close to zero. All kinds of hormonal deficiencies are common in CFS/ME - she probably has more that haven't been diagnosed. Even estrogen supplementation hasn't been without problems, but hopefully the side effects will subside as her body gets used to it.

"I guess I'll just have to deal with the fact that life is a rollercoaster and you can never plan anything in advance, as you don't know how you'll feel."

Her doctors, however, haven't given up. Maybe, with enough persuasion, they could get Katja to try one more antidepressant...