Constructive things to help yourself.

What a fab couple of weeks! I'm still on my delicious antibiotic/supplement cocktail (Spirochete Sunrise anyone?)  (Azithromycin/Amoxycillin and Artesunate 4 days a week and Tinidazole/Artesunate 3 days a week). Of course my recovery is just due to placebo/occult magic/psychosomatic/me just snapping out of it- or might it be sustained bactericidal action of via the wonders of modern medicine??? ;-). I know what I think....

I've been on an 8 mile cycle . There were no hills, I went fairly slowly and my legs were replaced by a pair of Jellyfish for a day or so afterwards, but hey- I did it! I've had energy to tidy the house and do a bit of gardening and even do crafty things in the evenings rather than pass out on the sofa. My sleeping has been mostly fine - what a relief that is- the 'tired but wired' Lyme insomnia is so frustrating! The headaches are gone, the dizziness is nearly gone, the twitching nearly gone. Most days I'm walking normally or nearly normal. Some days I don't feel ill at all, apart from being tired and a bit weak. Big smiley faces all round :-))))))

So, I thought I'd jot down some things I think are quite useful for the average Lymey to do:

1) Keep a symptom diary. 

Lyme is so mhhhasively up and down, so variable from day to day that sometimes it's hard to see the patterns of things. It's also helpful to write down when you had doctors visits and tests. I like to give a numerical score to my legs 1 being normal gait and strength, 5 being can hardly walk or cannot walk. That way, I can draw a graph of  leg severity which (as you can see below) shows an average 28 day periodicity- useful as that is characteristic of Lyme. Don't be scared to write down wierdy things that you are not sure if they are Lyme - quite often these symptoms are transitory and quite odd, but this seems to be something we see in Lyme and tick-borne disease- shifting fluctuating symptoms. I've had urinary incontinence just for 1 day, bladder pains just for an hour or so, dental pain that came and went but was always in the same few teeth (but the dentist said the teeth were fine), randomly occurring tendency to collapse when standing from sitting, pain in muscles and joints that shifts location from day to day, hour to hour, transitory numb patches on my shins and one thigh, transitory (up to 20 min spells but usually few mins) muscle twitching in thighs, upper arms, buttock, eye, tippy spells that can last just for a few seconds. On their own these symptoms can be explained away or ignored, but when they are added to the other pieces of the jigsaw, they can be suggestive of Lyme.

2) Request your medical notes.

You are entitled to see all your medical notes. They have to let you see them unless (text below taken from Department of Health guidance)

Situations where health information may be limited or denied
20. The Data Protection (Subject Access Modification) (Health) Order 2000 enables the
data controller to limit or deny access to an individual’s health record where:
• the information released may cause serious harm to the physical or mental
health or condition of the patient, or any other person, or
• access would disclose information relating to or provided by a third person who
has not consented to that disclosure unless:
- The third party is a health professional who has compiled or contributed to the
health records or who has been involved in the care of the patient.
- The third party, who is not a health professional, gives their consent to the
disclosure of that information.
- It is reasonable to disclose without that third party’s consent.is they think it would harm you or you might harm others by seeing them

You may have to pay a small admin fee to see them/get photocopies. The reason I think this is important is that I have found that details are important with Lyme and the details of tests, suspected diagnoses and observations often get overlooked. You may also want to see what has been written in letters about you- this can be quite revealing. Note- they do use code/technical words and terms. 'Functional' means it's in your head, essentially.  You may have notes that are wrong- for instance some doctor had written down that during my last acute phase I had a runny nose and cough- this is wrong, I had neither of these things and I pointed this out to the Infection Consultant overseeing my case. I have no idea why the doctor wrote this, he was foreign so there may have been language difficulties. This may have partly been why the consultant was happy to put this acute phase down to a 'Rhinovirus'. (which most people would go,' ooooh, a Rhinovirus, sounds nasty' - except the Rhinovirus is the causative agent of the common cold).

You can also ask for any consultants etc to copy you in on letters that they write to your GP. Saves time in requesting copies later (which can take several weeks). They might not like this, but they should comply with your request. 

3) Write down the things that suggest you might have tick-borne disease/Lyme.

I did this and keep it updated. I find having the bits and pieces in one document helpful. I have private tests and letters from private docs which are not in my NHS notes so I put these in the 'evidence' Doc which I keep updated. I guess there are pros and cons to doing this- the NHS may think you are being a bit obsessive and really 'want' to have Lyme. They might get uppity at your suggestion that you might have Lyme etc- Some doctors don't like being 'told' things like this. This is what I have written:

Evidence I have Chronic/relapsing Neuroborreliosis- Dr XXXXXXX 18/09/12.

I ask that this document be included in my notes.

1.       Positive IgeneX IgG western blot for Borrelia burgdorferi with bands indicating ongoing chronic infection. Appearance of new band (58kDa), not there in 2008 results, and  band 31kDa and 34kDa indicative of chronic Borrelia burgdorferi infection and Neuroborreliosis respectively. IgeneX are a specialist laboratory for tick-borne disease. They are certified by Medicare and Medicaid in the US, their results are accepted by many state medical boards and they do extensive validation and quality assurance of their tests.

2.       Two private Lyme Specialists, Dr XXX and Dr XXX, have diagnosed me clinically with Neuroborreliosis.

3.       Previous laboratory-confirmed Neuroborreliosis history which resolved with extended (19 month long) antibiotic  treatment.

4.       History and symptoms consistent with Neuroborreliosis:

·        21/6/12 Sudden Flu-like illness with Shivers, fever, transient shooting muscle pains, transient shifting arthralgias, headache, slightly sore throat, swollen glands, weakened legs resulting in gait disturbance and severe difficulty walking, could not walk more than 20m (worse on left, ok up and down stairs, very poor on the flat, very very poor on down slopes, slightly better on up slopes), CRP 60, then 88,  fluctuating blood pressure (dropped to 78/44, low on few occasions, not dehydrated – suggests autonomic nervous system dysfunction). Symptoms almost resolved on Levofloxacin, some legs weakness remained- response to ABX

·        1/7/12 – 4/7/12 2 days after finishing a week long course of Levofloxacin, return of poor gait  and legs weakness, especially on left, very bad fatigue and stamina, swollen glands, nausea, temp 37.7, infrequent shooting pains in muscles of legs and arms. Dizziness ‘tippy’ feeling, weakened arms, headache.

·        5/7/12 Palpitations (especially on exertion but also at night) in addition to above symptoms

·        6/7/12 had to use wheelchair to travel more than a few steps, legs very bad.

·        8/7/12 48 hours after starting ABX Amoxicillin (2g/day) Herxheimer reaction- response to ABX, ‘ill’ feeling, v. weak overall, could not hold a pint glass of water in one hand, too heavy. Fatigued, glands swollen, shooting pains in legs, headache, legs especially left weakened and gait very poor. Especially in afternoons/evenings.  Dizzy/tippy spells, faint spells, palpitations, nausea, needing afternoon nap but difficulty sleeping at night, transitory arthralgias in knees, elbows and hands.  Gradually these symptoms improved after about 6 days, remained in Amoxicillin/Tinidazole pulsed therapy – response to ABX

·        19/7/12 – 22/7/12 Symptom flare exactly 4 weeks after onset of initial febrile illness – reflecting 4-weekly flare cycle that us often observed in Lyme patients. New symptoms – worsening ataxia, hand tremor (transitory), bladder pain (transitory) and increased palpitations, twitching muscles in thighs, legs very bad, constant headache, ‘wooly’ feeling in head, suspected mild cognitive problems, positive Rombergs sign, have to use crutches.

·        Some improvement in symptoms upon starting Azithromycin and increasing dose of Amoxycillin and Artesunate- Flare was 5 days later than expected and less severe than expected- response to ABX

·        Continued gradual improvement on combination antibiotics, with increasingly good periods of normal gait and fewer symptoms. Symptoms fluctuate on a 4-weekly basis (see graph of legs). This cycle is a characteristic pattern seen in Chronic Lyme- response to ABX

5.       Three abnormal ECG’s- GP has requested ECHO and cardiology referral. ECG’s showing conduction abnormality- right ventricular conduction delay. Cardiac conduction problems are a well-known manifestation of Lyme disease. I have spells of faintness, breathlessness and palpitations, usually on exertion.

6.       Reduced reflexes in left side lower limbs (fluctuates, sometimes obvious, sometimes not, worse when legs are worse. Observed by GP and Dr xxx)

7.       Ataxia – cannot touch finger to nose on left hand side- sometimes there, sometimes not, happens when legs and other symptoms are bad.

8.       Positive Romberg’s Sign- again, variable, happens when other symptoms are bad.

9.       Raised CRP during febrile illness (60 then 88)

10.   Other laboratory findings:

·         During initial febrile illness, white blood count normal overall, but Eosinophils and Lymphocytes both low on two occasions (22/6/12, Eos- 0.02 (range 0.1-0.5) and Lymph-0.7 (range 1.5-4.0). 23/6/12, Eos 0.04 (range 0.1-0.5) and Lymph- 1.4 (range 1.5-4.0). Eosinophils still low on 24/06/12 at 0.05, but Lymphocytes just back within normal range. B. burgdorferi targets and kills B and T Lymphocytes and Lymphocytopenia is sometimes associated with B.burgdorferi infection. Eosinopenia may be indicative of Babesia infection.

·         Epstein Barr Virus EDNA IgG antibodies and EBV early Ag IgG antibodies reflect latent infection

·         Echo Virus N and P mix CFT consistent with recent infection

·         Raised levels of Aspergillus Niger IgG and Aspergillus Fumigatus IgG

·         Rhinovirus PCR from throat swabs

11.   Thyroid Peroxidase antibodies and Thyroid microsomal antibodies. Suggestive of start of Hashimotos Thyroiditus. Auto-immune destruction of the thyroid is often associated with Chronic Lyme infection (although in my case, this could be a pre-existing condition- family history).

12.   Fluctuating BP in initial febrile illness may reflect disturbance of autonomic nervous system, often associated with chronic borreliosis. I also have increased tendency to collapse and almost faint when rising from sitting to standing. This has happened with increased frequency since this relapse. Example- when sitting BP 106/54 pulse 76. Upon standing, BP 99/68, pulse 107. Tendency towards POTS (But not severe enough to be called POTS).

 

4) Write to your MP.

I don't know how often this happens, but I know one patient to was being denied treatment via her GP. She wrote to her MP and someone had a word with someone and ta-da! she was suddenly being prescribed antibiotics by her GP (with a private diagnosis, tests and recommendations to back it up). So it can help, worth a try, and how are things ever going to change if MP's aren't aware of what is going on in their consitiencies? This is what I wrote to my MSP (Member of Scottish Parliament). I have not had a reply yet, but will chase him up.

               

My address phone number and email here

MSP Name and Address here

Dear Mr XXXX MSP,

I am writing to you to ask for your assistance in obtaining appropriate treatment for a debilitating disease that I am suffering. My condition is treatable but I receiving no appropriate treatment from the NHS and I do not know where else to turn.

So you can understand my current situation, this is just some background on me and how I got this disease:

 I am on a career break to be a full time mother at the moment, but I have worked for many years as an Ecologist, most recently, working for xxxx..

 I contracted Lyme disease in May 2008 from a single tick bite (It is caused by a bacteria which is transmitted by ticks) on the Isle of Rhum. My initial symptoms were typical of Lyme - a severe flu-type illness without a runny nose or cough. I had a fever, sweats, severe headache, stiff neck, bright lights hurt my eyes, stomach ache, swollen glands, muscle pains, sore knees and after a day or so, my legs began to weaken. My GP referred me to the xxx Infection Unit the next day. By the time I arrived at the hospital I could no longer walk and was admitted immediately. I told them of my recent tick bite and suspicions of Lyme disease and was given 200mg a day Doxycycline. I have since been told by an NHS consultant  with a special interest in Lyme Disease (who prefers to remain nameless), that this was an inadequate treatment for what was quite probably Lyme disease of the Central Nervous System (Neuroborreliosis). This consultant said that had I been given the appropriate treatment at this stage (IV Ceftriaxone), I would have probably have been fully cured within a month, and would not still have Lyme disease today. In fact, recent studies show that low doses of Doxycycline could make the disease harder to treat in the long term, as it encourages the bacteria to become ‘cystic’ and these Cystic forms are very difficult to treat with antibiotics.

I was discharged from the hospital still quite ill, with 21 days of low dose Doxycycline. I was now able to walk, but had to hold onto furniture to get around and could not work. I was very weak and continued to have the headaches, now accompanied by dizziness, nausea, muscle pains, dental pain, joint pain, sleep disruption, unremitting fatigue. I realised that I may still have Lyme disease and went back to the hospital to ask for an increased dose of Doxycycline and I was given an increased dose for a further 30 days. This had some effect but before the 30 days was up, I relapsed. This cyclical pattern (worse every 4 weeks) is characteristic of Lyme disease. The hospital re-admitted me, performed various tests and discharged me with no further treatment. They gave me a diagnosis of ‘post viral fatigue’ or a ‘software problem’ and I was referred to a psychiatrist. The psychiatrist said I had no mental health issues. Prior to this I had been very fit and healthy - munro-bagging, rock climbing, mountain biking and doing lots of field work. Now I could barely walk round Tesco’s and some days I had to crawl around my house. I got sicker without treatment. I found it difficult to think clearly, could not converse properly and forgot things such as my PIN number and names for everyday items. Everyday tasks such as typing or reading became very difficult. I had poor spatial awareness and knocked things off surfaces.

I realised I was very ill and so went to see a Lyme specialist in xxx at the xxx Clinic which had considerable expertise in dealing with Lyme Disease. They diagnosed me immediately with Neurological Lyme Disease and they requested that the hospital give me 3 months IV Ceftriaxone (which penetrates the blood brain barrier so is more appropriate for central nervous system Lyme). The consultant there (Dr xxx), agreed to give me one  month of IV Ceftriaxone and I had to pay privately for the further 2 months, at considerable cost. The hospitalwere not willing to give me further treatment (despite by this time  having a positive private blood test for Lyme disease). Though I tested negative for Lyme by three standard NHS tests, there is much debate about the reliability of these tests. Having been warned by Dr xxx not to treat me, my GP was unable to help me either. Thus I was forced to get treatment via the xxx clinic. After 19 months of treatment with various antibiotics, I was finally well again. I had spent around £13K on private treatment, much of it donated by my parents and partner. My partner and I were finally able to start a family and we had a healthy baby in December 2010. I began to work with the charity Lyme Disease Action, raising awareness of the condition through giving talks to walking/outdoor groups, and most recently to medics at the hospital. I also helped other patients with their Lyme.

Recently I had an unexpected relapse of Lyme disease. This can sometimes happen as the bacteria can lie dormant for years. This was quite out of the blue as I had been completely well for 2.5 years.

Again, two private Lyme disease specialists have diagnosed me with Neuroborreliosis (Neurological Lyme Disease), and again, I have a positive private blood test. I have been to the hospital twice in the last few weeks (because of this relapse) as an inpatient and an outpatient and I am again been denied appropriate treatment for my Neurological Lyme disease. I was offered a short course of low dose Doxycycline, which I declined as it is likely to be ineffective and could in fact make the situation worse by creating cystic forms which are refractory to further treatment.

The doctors at the hospital do not believe in Chronic Lyme Disease. They maintain that Lyme disease will have been eradicated by short course of antibiotics and they say that any further illness called ‘Post Lyme Syndrome’ and is an autoimmune disease or historical damage. They maintain that further antibiotics will be ineffective.

Having been forced to extensively research Lyme Disease I know that there is overwhelming evidence that Lyme can and does persist through even quite long courses of antibiotics. Persistence of Lyme despite antibiotic treatment has been demonstrated in at least 77 peer-reviewed scientific studies. In contrast there really is no evidence for this theory of ‘post-Lyme syndrome’. There are several papers showing that long term antibiotics can help, and anecdotally, it seems to be the case that chronic Lyme patients who do manage to access long term antibiotics recover much or most of their health. I was told by my original xxx Lyme doctor that had I not been treated with long term antibiotics, I would most probably have ended up in a wheelchair and chronically ill. Again, I am being forced to pay for expensive private treatment at the xxx clinic, and having to endure tiring trips to southern England for consultations.

I have a toddler to look after and we would like to have another child (Lyme can be transmitted to babies in the womb and so I cannot get pregnant whilst I have Lyme- Dr xxx at the hospital was surprisingly unaware of this in-utero transmission). I am struggling to walk most days and have had trouble thinking clearly. I sometimes have to use crutches and occasionally a wheelchair.

I would like Dr xxx to work with the Lyme specialists at the xxx and provide appropriate long term treatment for me via the NHS. The antibiotics themselves are not prohibitively expensive (most of my costs were for a private IV nurse and consultations), so it should not be a decision influenced by cost. Dr xxx would not be contravening NHS or UK guidelines on Lyme disease because there are no such guidelines. There are several sets of guidelines written for the USA, Europe and Germany. It is a grey area as to which guidelines are most appropriate for the NHS to use, and it is really at the discretion of the doctors as to what guidelines they follow.

There is an NHS online resource  available to assist doctors with Lyme, called Clinical Knowledge summaries :

Clinical Knowledge summaries (CKS) says of diagnosis: Consider the possibility of late Lyme disease in people with a history of a tick bite or possible exposure to ticks when they present with any of the following (including:) Neurological disease - Late neurological Lyme disease can present as a slowly progressive central nervous system disorder (encephalomyelitis) or peripheral neuropathy.

Regarding treatment, CKS says: For anything but treatment for early stage treatment of the Lyme rash, advice should be sought from a specialist. It goes on to say that “There is current evidence to support both IDSA (the guidelines the hospital seem to use) and ILADS (the guidelines private Lyme specialists use, amongst others) schools of thought and it may be some time until one set of guidelines becomes generally more accepted than the other.”

As I have European, Neurological Lyme Disease,  the European Federation of Neurological Societies (EFNS) Guidelines would be appropriate in my case. These guidelines acknowledge there are many unknowns with regard Neurological Lyme disease, the EFNS:

·         Point out the lack of European treatment studies and controlled trials on treatment length.

·         Say most recommendations are based on opinion because of the lack of evidence.

·         Recognise that studies show significant treatment failure rates, but make no recommendation as to further treatment.

So, reputable sources of information which the hospital should be using, do not deny the possibility of chronic, relapsing Lyme which may be treatable with longer courses of antibiotics.

I am not alone in finding myself in this situation. I know of  9 other Lyme sufferers in this area who have been misdiagnosed, denied appropriate treatment and abandoned to suffer debilitating chronic Lyme disease by the hospital. There are likely to be many more. These people are now unable to work or on frequent sick leave because of their Lyme. Some are able to afford treatment privately, some are not getting any treatment and some are being treated by their GP ‘under the radar’. This is a disgusting state of affairs, this is a serious, treatable disease, and if caught early is curable. If misdiagnosed or undertreated, patients can go on to endure decades of ill health.

 I have sympathy for the NHS doctors, Lyme disease is not that common (75 cases in this area last year, probably an underestimate by a factor of 10), it is difficult to diagnose and the testing is unreliable. However, their refusal to consider the views of private specialists (unfortunately there are no NHS specialists in Lyme), and their blind refusal to believe in the possibility of chronic or relapsing Lyme, is unacceptable.

If you would like to discuss these matters further, I have included my contact details, above. I would be very appreciative if you could assist me in any way at all with this.

Yours Sincerely,

Quite a lot of dense text and the MP letter is a bit long, I know, but it's quite hard to cut these things down sometimes. Anyway, these are things I've done, I have found them helpful perhaps you will too. They haven't gotten me NHS treatment, but I feel better for having done them, and they might help some people get NHS diagnoses and treatment, you never know. With the blancmange brain and general knackeredness I found it difficult to do these things when I first got Lyme. This is why I've included my detailed diary, etc as it might be easier for someone to do these things if they have a sort of template to follow. The diary has been the most useful thing, there's no way you'll remember everything unless you write it down and the private doctors found it really useful.