What to do if you’ve just been diagnosed with Lyme disease

So you’ve just been diagnosed with Lyme disease. Now what?

1. Don’t panic!

The amount of doom and gloom about Lyme disease on the internet may make you think you have something worse than anthrax. Just remember that more than half of people who catch Lyme disease recover completely, and even a sizeable proportion of the rest of them do recover quite well.

If you’ve started treatment within 6 weeks of getting ill, your outlook is extremely good.

2. Check the dosage of your medication.

You should have been prescribed an antibiotic to treat your Lyme disease. The doses for Lyme disease are longer and higher than for most infections, and with the NICE guideline still fairly new, some doctors are not yet aware of this.

For most cases of Lyme disease, you should have 21 days of antibiotics in the first instance. For some symptoms the treatment time will be longer and for some, less-often used antibiotics, the time may be shorter.

The correct dosage of Amoxycillin for adults is 1,000mg taken three times per day, meaning you should have a total of 3,000mg of this antibiotic every day for 21 days. This is double the dose for most other infections.

Check all the recommended treatments and dosages for Lyme disease here.

3. You may feel worse before you feel better

With most antibiotic treatments, you realise you are feeling better after a few days and it’s all gravy from there! With Lyme disease, some people have a horrible first few days.

If you react badly to the medicine, contact your doctor to evaluate whether this is part of normal recovery or if there is an adverse reaction to the medicine. Some people have a high level of bacteria in their body by the time they begin treatment and for the first few days they struggle to excrete all the dead bacteria from their bodies. The accumulation of toxins in this period can cause headaches, body pains and in general feel far worse than the illness did before treatment started. (This is called a Jarish-herxheimer reaction).

It can last several days, but very rarely means treatment should stop. Drink lots of water as this helps your body flush out all toxins. You don’t have to rough it out. You can also take Nurofen or another painkiller to relieve muscle aches, and some patients report that over-the-counter antihistamines give them relief, even though we do not know of any medical evidence about this.

Always contact your doctor if symptoms in general notably worsen, or if new symptoms occur. In particular, if a rash appears anywhere on your body, you must show the doctor as a matter of absolute urgency. It could be an allergy to your antibiotic and must be evaluated by the doctor.

4. Plan a breakfast without milk

If you are taking doxycycline, calcium will interfere with your ability to absorb it. So it’s goodbye to milk with cereals or yoghurt for breakfast. One piece of research suggested you might only be able to absorb half the medicine if you have it with milk or other dairy foods. Remember that rice milk or nut milk usually has calcium added, so you need to steer clear of that too. It’s time to start having beans on toast or eggy soldiers instead.

You can take doxycycline for Lyme disease in the morning or evening, or take half in the morning and half in the evening. Whatever you do, your dairy products need to be at least two hours away from it.

5. Look after your spirits

There’s nothing better than happiness to give the immune system a boost. This is scientifically proven, so jump on it! Go on, indulge yourself. Whatever makes you feel happy and special, do it.

Plan activities that will not tire you out. Art and craft activities are ideal. Catch up on some TV series you love. Reading is good for you so long as your concentration and eyesight can take it.

6. Look after your stomach

We know we’re going on about this rather a lot, but 3 weeks of antibiotics will be hard going. Be nice to your tummy!

Cut out sugar, as this makes diarrhoea more likely. If diarrhoea becomes extremely severe some people have to interrupt their treatment, so this should be avoided at all costs! Give your self nutritious meals and snacks which are gentle to the stomach. Lots of coffee or tea, booze or spicy food may not be the most soothing stuff to give your insides. If there are certain foods that you know you don’t digest too well, give them a miss entirely.

If you are actually being sick, you need to see your doctor again and have a talk because you may not be getting the full treatment that you need.

7. Get some probiotics

You will be on this medication for three weeks, and that’s pretty heavy going for the intestine. Those healthy bacteria in your gut are your friends and they keep your digestion working, so you may want to top them up. Some research has shown it helps to take probiotics during your antibiotic treatment rather than just waiting till the end of treatment.

For them to have any effect, you need to take them several hours away from your antibiotics and you may want to ask your chemist for advice on types of probiotics that are antibiotic resistant.


8. Rest plenty

You are hardcore and don’t need time off for this, right? Wrong, probably. Your body is working very hard on fighting Lyme disease, key parts of it – including your whole nervous system and brain – are being attacked and damaged. This is not just flu you are dealing with so don’t try to act as if it is.

Ask for help around the house if you are getting tired out by daily tasks. Proper rest at this early stage could make a real difference to how things pan out for you in the medium to long term.

9. Don’t suffer in silence

If you are feeling pain all the time, take over-the-counter painkillers. Pain is proven to weaken the immune system and to slow down tissue healing, so being brave about pain does not mean you are brave, it simply means you are not taking great care of yourself.

10. Are you better now?

Some people aren’t better after one course of treatment for Lyme disease, and need another one.

If you don’t feel properly better after your three weeks of antibiotics, then go back to the doctor without delay to talk about your symptoms and evaluate whether you need another three weeks of treatment. The doctor will be on the look out for symptoms that suggest your immune system is still actively fighting an infection. These could include fevers, night sweats, muscle aches all over, swollen or painful glands, and might also include excessive tiredness and headaches. It is very important to return to your doctor without delay if you still have these symptoms at the end of treatment, or if there are any other persisting symptoms which are causing you to suffer.

Early nights and restful weekends are essential and you may want to ask your employer about the possibility of a part-time initial return to work. You should enlist your GP’s help if your employer is not fully supportive of this. It is your GP’s job to document the support you need, and this is mentioned in the NICE guideline.

Posted in Blog posts, Info and resources for patients and carers.

One Comment

  1. Excellent info wish I stumbled across this when I first got bitten.

    Would Epsom salt baths be worth mentioning because as a patient I have found them very useful

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