Tuesday, 25 September 2012

The drugs DO work...the evidence

Apologies to that mannie from 'The Verve', but in my case, the drugs do indeed work. 

Yesterday I walked up a hill! Now, admittedly, it was a mild-mannered amble up a fairly teensy hummock, but I got to the top (and back down again with the aid of crutches) with no real problems. I was walking like  Andy Pandy on beta blockers for the rest of the afternooon, but no long term fallout, I'm not shattered or anything today. Yay! This wouldn't have been possible a couple of months ago, when just getting upstairs was a real challenge.


... but do they really work? Could this just be me, getting better anyway- might I have improved without the antibiotics? Is is not just a placebo effect? Are the antibiotics just making me feel better by reducing inflammation? (I will post more about this persistence v's post-infective inflammation another day)

Well...I know personally many people who have chronic Lyme and have recovered most or all of their health with long-term antibiotic use. There are thousands of people worldwide who can tell the same tale- long term antibiotics DO work- and I know from personal experience that they worked for me. I was ill with Lyme for 19 months in 2008/2009. I had various antibiotics for most of this time  and I got better- completely well - for 2.5 years. I tried to stop the antibiotics a few times and relapsed each time, only when I had been symptom free for 2 months on antibiotics could I stop them and remain symptom free. Yes, I have now relapsed, but that just goes to show how it is very very difficult (impossible?) to fully eradicate the Lyme bacteria once it has spread. I am very thankful for those 2.5 years, and can get there again, with the right drugs.

Those personal tales are all very well, but WHERE IS THE SCIENTIFIC EVIDENCE? 

There is a lack of research in this area. In particular, there is a lack of good quality European trials (European Lyme is often caused by different genospecies of the bacteria, so may be subtly different to American Lyme). The papers allegedly showing long term antibiotics have no effect have been heavily criticised in numerous other publications (I will post links at a later date)

However, the following studies show longer courses of antibiotics can be beneficial for Chronic Lyme:

1)Fallon B et al., “A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy” Neurology 2008;70;992-1003
Methods: Patients had well-documented Lyme disease, with at least 3 weeks of prior IV antibiotics,
current positive IgG Western blot, and objective memory impairment. Healthy individuals
served as controls for practice effects. Patients were randomly assigned to 10 weeks of double masked
treatment with IV ceftriaxone or IV placebo and then no antibiotic therapy. The primary
outcome was neurocognitive performance at week 12—specifically, memory. Durability of benefit
was evaluated at week 24. Group differences were estimated according to longitudinal mixedeffects
models.
Results: After screening 3368 patients and 305 volunteers, 37 patients and 20 healthy individuals
enrolled. Enrolled patients had mild to moderate cognitive impairment and marked levels of
fatigue, pain, and impaired physical functioning. Across six cognitive domains, a significant
treatment-by-time interaction favored the antibiotic-treated group at week 12. The improvement
was generalized (not specific to domain) and moderate in magnitude, but it was not sustained to
week 24. On secondary outcome, patients with more severe fatigue, pain, and impaired physical
functioning who received antibiotics were improved at week 12, and this was sustained to week
24 for pain and physical functioning
. Adverse events from either the study medication or the PICC
line were noted among 6 of 23 (26.1%) patients given IV ceftriaxone and among 1 of 14 (7.1%)
patients given IV placebo; these resolved without permanent injury.
Conclusion: IV ceftriaxone therapy results in short-term cognitive improvement for patients with
posttreatment Lyme encephalopathy, but relapse in cognition occurs after the antibiotic is discontinued.

Treatment strategies that result in sustained cognitive improvement are
needed. 
 
 n.b. The Fallon study gave 10 weeks IV ceftriaxone (or placebo) to patients with fairly severe disease, who had already had at least 3 weeks prior IV therapy- so these were quite sick individuals that seemed to have fairly treatment-resistant Lyme. I think most Lyme-specialist doctors (ones who do not follow IDSA guidelines) would give follow-up oral antibiotics of various types to fully treat these kind of patients.

2)   Stricker RB, DeLong AK, Green CL, Savely VR, Chamallas SN, Johnson L Benefit of intravenous antibiotic therapy in patients referred for treatment of neurologic Lyme disease. International Journal of General Medicine, 2011 Volume 4 Pages 639 – 646.

Conclusion: Prolonged intravenous antibiotic therapy is associated with improved cognition,
fatigue, and myalgias in patients referred for treatment of neurologic Lyme disease. Treatment
for 25–52 weeks may be necessary to obtain symptomatic improvement in these patients.

N.B. this was not a double-blind placebo controlled trial, but instead looked at patients receiving extended courses of intravenous Ceftriaxone.


3) Clarissou J, et al. “Efficacy of a long-term antibiotic treatment in patients with a chronic Tick Associated Poly-organic Syndrome (TAPOS).” Med Mal Infect (2008), doi:10.1016/j.medmal.2008.11.012

SETTINGS:Despite a now codified antibiotic treatment for Lyme disease, a significant proportion of patients treated according to recommendations complain of persistent signs and symptoms. The pathophysiological mechanisms which underlie this syndrome of post-treatment chronic systemic illness remain unclear. For some physicians post-treatment symptoms indicate a persistent infection requiring prolonged antibiotic therapy. For others, there is no benefit from antimicrobial therapy. The difficulty of assessment encountered in studies is significant because many symptoms are subjective. We think that the term "chronic Lyme disease" is not appropriate and should be replaced by chronic "tick associated poly-organic syndrome" (TAPOS).

OBJECTIVE:This open-label prospective study was made on a group of 100 patients having followed a medical treatment for a chronic TAPOS and to evaluate their evolution under prolonged antibiotic treatment.

RESULTS:The medical management was found to be effective for symptoms, especially for patients with a high probability of chronic TAPOS (NEJM score). Patients with post tick-bite symptoms, which often worsens their quality of life, deserve particular attention.

CONCLUSION:This study had methodological limitations but could help in terms of feasibility, choice of inclusion criteria, and design of follow-up for a future randomized, double blind study to test for an optimal management of TAPOS.

I could not get the full text to this Clarissou paper, so cannot comment on it but I will update this page if I get hold of it.


4) Sam T. Donta, Tetracycline Therapy for Chronic Lyme Disease. Clin Infect Dis. (1997) 25(Supplement 1): S52-S56 
Two hundred seventy-seven patients with chronic Lyme disease were treated with tetracycline
for 1 to 11 months (mean, 4 months); the outcomes for these patients were generally good. Overall,
20% of the patients were cured; 70% of the patients’ conditions improved, and treatment failed for
10% of the patients. Improvement frequently did not take place for several weeks; after 2 months
of treatment, 33% of the patients’ conditions were significantly improved (degree of improvement,
75%–100%), and after 3 months of treatment, 61% of the patients’ conditions were significantly
improved. Treatment outcomes for seronegative patients (20% of all patients) were similar to those
for seropositive patients. Western immunoblotting showed reactions to one or more Borrelia burgdorferi–
specific proteins for 65% of the patients for whom enzyme-linked immunosorbent assays
were negative. Whereas age, sex, and prior erythema migrans were not correlated with better or
worse treatment outcomes, a history of longer duration of symptoms or antibiotic treatment was
associated with longer treatment times to achieve improvement and cure. These results support the
use of longer courses of treatment in the management of patients with chronic Lyme disease.
Controlled trials need to be conducted to validate these observations.

Again, this is not a controlled or blinded trial, but the results are encouraging nonetheless.  

5). Sam T. Donta. Macrolide therapy of Chronic Lyme disease. Med Sci Monit. 2003 Nov;9(11):PI136-42.

MATERIAL/METHODS:235 patients with a multi-symptom complex typical of chronic Lyme disease, ie fatigue, musculoskeletal pain, and neurocognitive dysfunction and with serologic reactivity against B.burgdorferi were treated with a macrolide antibiotic (eg clarithromycin) and hydroxychloroquine. Patients were treated with hydroxychloroquine, 200 mg twice daily, and a macrolide antibiotic (clarithromycin 500 mg twice daily, azithromycin 250–500 mg daily, or erythromycin 500 mg three times daily). The treatment was continued until patients’ symptoms were resolved or improved.

RESULTS:Eighty % of patients had self-reported improvement of 50% or more at the end of 3 months. After 2 months of treatment, 20% of patients felt markedly improved (75-100% of normal); after 3 months of treatment, 45% were markedly improved. Improvement frequently did not begin until after several weeks of therapy. There were no differences among the three macrolide antibiotics used. Patients who had been on hydroxychloroquine or macrolide antibiotic alone had experienced little or no improvement. Compared to patients ill for less than 3 years, the onset of improvement was slower, and the failure rate higher in patients who were ill for longer time periods.

CONCLUSIONS:These results support the hypothesis that the Lyme borrelia reside in an acidic endosome and that the use of a lysosomotropic agent augments the clinical activity of macrolide antibiotics in the treatment of patients with chronic Lyme Disease. In contrast, the efficacy of tetracycline in such patients is not affected by hydroxychloroquine. 

Again, not a controlled or blinded study, but results seem good. Macrolides (Clarithromycin, Azithromycin or Erythromycin) are often used successfully by LLMD's and they do sometimes combine them with Hydroxychloroquine to make them more effective.

The following references are taken from the DBG guidelines. I have not checked these through, but they apparently provide evidence of the positive effect of long term antibiotic therapy:

6) CIMMINO, M. A.; ACCARDO, S.: Long term treatment of chronic Lyme arthritis with benzathine penicillin. Ann Rheum Dis 51 (1992), 1007–1008
The cases are reported of two patients with chronic Lyme arthritis resistant to the recommended
antibiotic regimens who were cured by long term treatment with benzathine penicillin.

 
7) DATTWYLER, R. J.; HALPERIN, J. J.; PASS, H.; LUFT, B. J.: Ceftriaxone as effective therapy in refractory Lyme disease. J Infect Dis 155 (1987), 1322–1325

8) FALLON, B. A.; LIPKIN, R. B.; CORBERA, K. M.; YU, S.; NOBLER, M. S.; KEILP, J. G.; PETKOVA, E.; LISANBY, S. H.; MOELLER, J. R.; SLAVOV, I.; HEERTUM, R. V.; MENSH, B. D.; SACKEIM, H. A.: Regional cerebral blood flow and metabolic rate in persistent Lyme encephalopathy. Arch Gen Psychiatry 66 (2009), 554–563. http://dx.doi.org/10.1001/-archgenpsychiatry.2009.29

9) GASSER, R.; DUSLEAG, J.: Oral treatment of late borreliosis with roxithromycin plus co-trimoxazole. Lancet 336 (1990), 1189–1190

10) GASSER, R.; REISINGER, E.; EBER, B.; POKAN, R.; SEINOST, G.; BERGLÖFF, J.; HORWARTH, R.; SE-DAJ, B.; KLEIN, W.: Cases of Lyme borreliosis resistant to conventional treatment – Improved symptoms with cephalosporin plus specific beta-lactamase inhibition. Microb Drug Resist 1 (1995), 341–344

11) KLEMANN, W.; HUISMANS, B.-D.: Patienten mit Erreger-Direktnachweis bei chronischer Lyme-Borreliose – Klinik, Labordiagnostik, Antibiotika-Therapie und Krankheitsver-lauf. Eine retrospektive Studie. Umwelt-Medizin-Gesellschaft 2 (2009), 132–138 


It should be said that probably part of the reason that there are so few good, large, double-blinded controlled trials is that they are very difficult to do. Ethically, they are difficult- to give seriously ill patients a placebo when there is data suggesting further antibiotics could be helpful is questionable. Getting big enough cohorts of patients to take part is very tricky- the Fallon trial used only 1% of screened patients as they were very strict about eligibility criteria. I imagine the funding is hard to get since the big players in infectious diseases do not seem to believe chronic Lyme is a treatable disease.There is a lot of Lyme in mainland Europe, but not as much as the US, so perhaps that is hampering the development of European trials? There is currently a study ongoing at a University in the Netherlands though-see this link: 

http://www.nhs.uk/Conditions/Lyme-disease/Pages/clinical-trial-details.aspx?TrialId=NCT01207739&Condition=Lyme%20disease&pn=1&Rec=0&CT=0 

After an initial course of IV Ceftriaxone, they are comparing 3 months follow-up treatment with either placebo, Doxycycline (100mg twice a day) or Clarithromycin (500mg twice a day) combined with Hydroxychloroquine (200mg twice a day).

This should be an interesting study, and I look forward to the results. I know Clarithromycin and Hydroxychloroquine is used by some LLMD's in the states and 12 weeks is decent treatment duration (although maybe not long enough for some cases).

  In the meantime, I'll just keep taking the tablets!
1003

Monday, 17 September 2012

The four week flare-up and spirochete video

Annoying, frustrating, predictable, useful, curious- why does Lyme do this four-weekly flare up thing?

This post may be rather incoherent and short as I am having a four weekly flare up right now. Bleugh. For the last week, I'd been walking normally and had virtually no symptoms. Done loads, felt great. Then, on cue, it's back. Walking like a jellyfish on stilts, brain power of a demented sea slug, dizzy, insomnia (yet shattered), twitching muscles, nausea, random pains, weakness, typing like my dad, fainting when I stand up, palpitations, swollen glands, feel like I have bin juice coursing through my veins instead of blood.

I'm used to this phenomenon, but when I first had Lyme in 2008/2009 I was continually disappointed at the arrival of my 4 weekly flare up. It only really appeared after the treatment started to work, I was just ill all the time before that. This time, I've had it from the start- I've even put green Lyme lines on the calendar to show when I expect my spiros to start having a party. Useful, since I don't schedule anything taxing that week and try to have any doctors appointments when I have my flare so they can see what I'm like. I also think it's a good sign that I am good inbetween.

Why do these flare cycles happen? As far as I can make out (and with today's brain smog, this is kind of like my toddler reading Chaucer) there isn't really any research done on that. There are theories- and (again, I could be wrong), which seem to suggest it may be due to periodic changes in the surface proteins of Borrelia, or it may be correlated with the menstrual cycle, or, it may reflect the growth cycle of the bacteria, which is intermittent- it is having a sudden burst of reproduction and activity every 4 weeks or so. Tick-borne relapsing fever (also caused by Borrelia species) is named after it's characteristic relapsing remitting pattern.

This is probably quite  a useful link (Thanks Joanne Drayson!)

http://lookingatlyme.blogspot.co.uk/2010/01/symptom-flares.html

Whatever their cause, they are really interesting to me, and really characteristic of Lyme. Not everyone seems to have them,  from what I can tell speaking with other sufferers, the sicker patients tend not to notice these monthly flares, they emerge in the less ill or the patient undergoing treatment.

What I find quite amazing is that normal doctors seem baffled/not interested by this. They are surely familiar with the periodicity exhibited by malaria- yet when I mention this regular flaring (always preceded by a good week), they look blankly at me as if I am speaking in tongues or something. I think it is rarely/not mentioned in the ISDA/BIA/EFNS guidelines or other articles they may have read on Lyme, so they're probably thinking I'm nuts. I would have thought a patient describing such a relapsing-remitting disease is very far from nuts and is offering a very useful diagnostic pointer.

I would be really interesting to know how many Lyme patients notice this cycle, and if as many men as women experience it.

Dr Marie Kroun notes that spirochetes can be seen in wet blood smears during these flares,

http://lymerick.net/newsite/viewpage.php?page_id=3 

so I am off to sit at my newly-borrowed microscope to see if I can see mine. I saw them back in 2008 (see video below) - apologies for the poor quality, I was literally just holding a compact camera to the microscope lens. We saw other, better spiros (including one entering a white blood cell), but the camera batteries ran out at the critical moment!


video
video
.. having just watched those back, I realise you can't actually make out the spiros in the uploaded version- you can in my version-honestly! if anyone wants the original files, I can send them on to you. Doh!

Thursday, 13 September 2012

Rant



It’s amazing what they can do nowadays isn’t it? They can do face transplants, make the deaf hear again, stop people dying of AIDS, treat loads of cancers really successfully and they’ve even eradicated smallpox. 

Yet like some terrible B movie, there is an almost total failure to treat or even recognise chronic Lyme and its little accomplices of co-infections and hormonal and metabolic meltdown.

People are dying (I have met two people who consider their relative/friend to have died of Lyme), people are committing suicide, people are losing their jobs, relationships are strained to breaking point, children are robbed of their childhood, babies are born infected, people go psychotic/demented/have personality changes/become depressed/massively anxious, people sell their homes and get into huge debt  to pay for treatment, people become comatose, people become completely incapacitated and need 24h care, people are paralysed, people have to live day in day out with crippling pain, people feel marginalise and paranoid that no-one believes them, people are desperately ill and just existing from  day to day, on benefits, abandoned by the National Health Service that they  once believed in and left to rot.

None of this needs to happen. There is actually a way of stopping all of this. It’s not some amazing super-techno wonder-drug that costs a fortune, it’s just simple Antibiotics and recognition of tick-borne illness that people need.  Caught early, recognised as potentially serious, treated robustly with appropriate doses of the right antibiotics, most people can recover completely and quickly. 

Sometimes that doesn’t work, but experience with thousands of people has shown, that a knowledgeable and thoughtful  doctor can coax the majority of these people back to health- with enough time, antibiotics  and perhaps, anti-malarials, dietry changes and some supportive medications and supplements. 

It’s not even as though this is a new or incredibly rare disease- it’s been around for centuries and reasonably common for about 20 years . In the USA, it’s more common than HIV/AIDS and in the UK, it’s at least as common as Syphilis (by the HPA’s own rather conservative estimates). Syphilis and HIV are both recognised as potentially very serious, treated with long-term drugs, and both are routinely tested for by the blood service. None of these things are happening for Lyme and tick-borne disease. The same doctors that treat HIV and Syphilis are saying Lyme is curable by 30 days of antibiotics. When patients come back, still sick after their standard 30 days of antibiotics, they are suddenly, magically, either no longer infected with the Lyme bacteria, or the diagnosis is changed and it was never Lyme in the first place and they are now crazy/depressed/have post viral fatigue/chronic fatigue/post- Lyme syndrome etc and are basically shoved out of the door with a Bye Bye, don’t darken our ward again with your ranting nonsense about persistent Lyme.

This refusal to even consider the possibility that Lyme can persist, in its’ infective form, despite short term antibiotics is simply not supported by the evidence.  There are at least 80 studies showing the bacteria can survive antibiotics, sometimes, it has been shown to survive several months of antibiotics.  There are some studies showing long term antibiotic use can be beneficial, and there are thousands of patients of LLMD’s who can testify to that.  People who can afford to pay for this treatment usually recover all or almost all of their health. Unfortunately, these success stories are rarely documented in the literature, but they are there, in their thousands, living normal lives again as a result of long-term treatment. Sure, there is a scarcity of really good, double-blind placebo controlled studies showing long term treatment does work. However, by the same measure, there is a scarcity of really good double-blind placebo controlled studies showing long term treatment DOESN’T work. The handful of studies used to support the denialists argument are laughably flawed. The incredible ‘stealth pathogen’ biology of the bacteria is the key- once this is understood, it is obvious that short courses of antibiotics are just not going to cut the mustard. 

The trouble is, the Infectious Diseases  doctors  are too busy to read the literature. They put their faith in the authorities, the societies, the learned journals, to write guidelines to tell them the truth and how to deal with this weird disease that is so variable, so hard to diagnose, so hard to cure.

Guidelines - they should be an unbiased distillation of a thorough  search of all the available literature, right? They should be written by democratically-elected committees with representatives of patients, researchers and clinicians, right? They should adhere to NHS/recognised procedures to ensure an unbiased and accurate result, right? Wrong. They are actually written by a self-selected handful of biased Doctors, who have conflicts of interest and cannot, just cannot, admit that they might actually be wrong. Ego is the enemy of truth and these guideline authors have ego aplenty. 

There are other guidelines, written by groups of doctors who work at the coal face - they see patients every day who do get better with long-term antibiotics. They admit that no-one knows what the optimal treatments are. In fact, for a disease with so much variability, a one-size fits all solution will probably never be appropriate anyway. For the majority of overworked NHS doctors, these other guidelines are pretty much dismissed because they don’t have the kudos that the IDSA, CDC, HPA, EFNS and BIA have (that’s a lot of abbreviations!).

To me, it is disgraceful  that these organisations are abusing their power and influence and are allowing shoddily-written and researched (yet widely believed) papers and guidelines to be published. What hospital doctor or family GP, has the time or inclination to sit and read through reams of primary literature on a disease they see fairly little of? It should not be left to patients and patient organisations to educate the medics, but that is what is happening. Unfortunately, the years of ‘official’ misinformation and misleading guidance has taken its’ toll and many doctors are unreceptive to patients showing them scientific papers, positive test results, private diagnoses of Chronic Lyme. Many just don’t want to know.

So patients are suffering. Cast adrift, they either turn to herbal and untested remedies, or else buy antibiotics from the internet. The lucky few who can afford it are driven to private treatment, some, like myself, manage go abroad. The really unfortunate ones are either too ill or worn down to argue with their bin diagnoses or too poor to even afford the herbals/internet drugs. They generally become increasingly ill.

I feel I must end this rant on an optimistic note. There are a few, thinking doctors out there who suspect all is not quite right with the guidelines and official line on Lyme. Usually GP’s, some of these doctors will take the risk and prescribe long term antibiotics for patients – they see results, they know they are doing the right thing. They keep it quiet, the patients keep their identity secret, for fear of persecution. I’d just like to applaud those brave few (and also the tiny number of private Lyme docs in the UK) for putting their head above the parapet and helping us. Thank-you, I just wish there were more like you. Thank- you also, the campaigners, Lyme Disease Action, BADA-UK, the stalwarts who help the uninitiated, the people who are not giving up on this injustice. You are bright stars in a murky sky.

Tuesday, 11 September 2012

Lyme overview presentation

Hi Folks,

I  wrote this presentation on Lyme. It is a general overview of Lyme with particular references to Scotland as it was given to Doctors and Nurses in my area. I hope it is useful as an intro to Lyme. There are a few medical terms in it, but it should be understandable by most people I think.

Please read it with the notes, the notes add quite a lot of explanation to the slides. I'm too much of a numpty to figure out how to have the notes visible on the powerpoint presentation in google docs, so have put them into a separate word file (see link below). Feel free to print off and give to others to read- a GP might be interested for instance. If anyone spots any errors, please let me know, Thanks. I hope it opens correctly, if it doesn't, please let me know.

Have a good day everyone,

Lymey Wifey

The presentation:
 
https://docs.google.com/open?id=0B6a41zFNzjynSy16bWpqcVl2ZVk


The notes:

https://docs.google.com/open?id=0B6a41zFNzjynelAtRV9yR00xUDQ 

Monday, 10 September 2012

Introducting Lymey Wifey

Hello World,

Just thought I might start a wee Lyme blog to share my accumulated Lyme Disease know-how, rant a bit, document my progress on (and hopefully, off) treatment, and put out some stuff which might help people in their battles with the medical establishment.

So, who is this Lymey Wifey? Well, I'm not really a wifey (I have a fantastic partner, John, but ssshhh- we're not married) and a gorgeous 20 month old daughter. Wifey is just what they call women in this part of Scotland, a rather endearing term, I think you'll agree. John is what they call a Mannie. I do love Aberdeen, we're not Scottish (Sassenachs), but I find myself increasingly jibbering in Doric or Scots.

So, I'm an Ecologist/Entomologist/Evolutionary biologist by training, spent a number of years working in grotty, mouldy basements full of cages of insects and some really cool places full of midges and mosquitoes. I have a PhD on the sex life of the dung fly - always a conversation stopper at parties. I have always been a hillwalker/rock climber/mountain biker, and so has John, which is how we met. Currently on a career break to be a full time mum, which is fab.

I got Lyme disease in  May 2008. One fateful, beautiful day on the lovely Isle of Rhum (West coast of Scotland) and my life was really changed forever. Here is my timeline of how I got well again:

http://www.lymediseaseaction.org.uk/wp-content/uploads/2011/08/Story-Nicola-Seal.pdf 

I got treatment (cue 19 months of LOTS of different antibiotics, a lot of money and hassle, lots of disappointments and eventual remission). 2.5 yrs of being completely well, absolutely no sign of the Lyme. We had our beautiful daughter, moved house, I gave up work and John  got a new job. Life was really very good, then BAM! The Lyme came back, totally out of the blue. Gutted, really didn't want to believe it, but there it was- definitely, definitely Lyme- exactly the same as last time. (Probably triggered by a minor virus from my daughter)

The curious (and quite unusual) thing about my Lyme is that it's primary symptom is an abnormal gait. I walk like a Zombie C3PO! Myopathic gait they called it. My knees turn in, my thighs are very weak, my feet have poor control and plonk down noisily and sometimes one foot drags a bit and catches on the floor. Occasionally I can't walk at all and have to crawl. It's very variable- some days I can walk normally (albeit with weak legs) and some days I have to use crutches (which are wildly impractical with a toddler). I have had to use a wheelchair at airports. I'm always better in the morning, my batteries are really cheap value ones and run down very quickly. Often the first few steps are fine, then the weakness kicks in and I go flopsie daisy again. I used to stomp up mountains regularly, so this flolloping about like a malnourished kitten is a bit hard to get used to. I can do stairs normally (well, slowly and with much puffing and panting at the mo), but the flat is bad, down slopes worse and up slopes better. Weird.


video

Anyway, the fortunate (ish) thing is, this gait problem means it's really easy to recognise when I've got the Lyme, it's so characteristic. I grade my legs 1-5. 1 is normal gait, 5 is hardly able to walk or cannot walk. The day I got the Lyme back, it was a 3, then rapid (few hours) progression to a 5, with me slumped on the kitchen floor quite scared. I felt awful, the flu- like symptoms were back (no runny nose, or cough, but fever, chills with spasms of huge shivering, headache, swollen glands, pain in muscles and joints, stomach pain). Off to hospital, few nights there, didn't sleep much, felt rotten, sore throat, swollen glands, awful night sweats, fever, blood pressure kept dipping for no reason, (78/44 at one point), chills, headache, weakness, tippy/dizzy feeling, nausea, nasty pains in joints and muscles, dental pain in a couple of teeth (had gone to dentist few weeks earlier and been given all clear), twitching muscles. I could only walk short distances if I held onto furniture, and then very slowly. I had to have a wheelchair in the shower as I couldn't stand for long. They gave me a weeks worth of Levofloxacin (they suspected Mycoplasma), I got a lot better and I was discharged. They pretty much refused to even consider the possibility that it could be a Lyme relapse. I knew that this was what it was, as the symptoms were exactly the same as last time- and the gait was so specific and exactly the same. Of course two days after the Levofloxacin ran out, I was back walking like zombie C3PO and feeling like poo again.

Sometime after, I got a rather amusing letter telling me they had isolated Rhinovirus (the virus that causes common colds) from my nose, and therefore it was just a Rhinovirus.Wow, that's a pretty nasty cold.

Managed to get appointment at private clinic nr Luton that I'd been to before. Also went to Yorkshire to see a GP who I'd heard treated Lyme. Diagnosed clinically with classic neuroborreliosis by both of them, with letters to my GP. The Yorkshire Doc observed reduced reflexes on my left side and the Luton Doc observed slight ataxia. Both could see I was having real difficulty walking, both thought this was the Lyme.

The Doc at the Luton clinic started me on a combo of Amoxicillin (2g a day), Azithromycin (2 g a day) for 4 days a week and Tinidazole (1 g a day) for 3 days a week. They also threw in some Artesunate at 40 mg a day, which is a malaria treatment that can apparently kill Babesia (in case I had that- it's a co-infection but it's quite hard to diagnose) and also Borrelia (the Lyme bacteria). Oh, quite  few supplements as well.




My first monthly flare-up was bad, legs were rubbish and I needed crutches. I was at the Lyme Disease Action conference in Carlisle, which was great, but not great timing. Then I got the dreaded brain fog- awful- couldn't think straight and took my daughter for a walk with no shoes on and put her milk in the microwave instead of the fridge. 

Did a couple of neurological tests on myself- Rhombergs where you stand with feet together and close eyes, I just fell over immediately. You are supposed to be able to stay upright. Also finger to nose touching, I couldn't do it on one side- just the same as last time. I didn't know where my nose was with my eyes closed.  U-oh, I thought, it's in my brain again. 

So off to the hospital again as I thought, surely, they'll be able to see this, measure, this and will take notice. Spend 2 hrs fruitlessly arguing with Dr Dickhead who just kept saying 'I'm not going to have a debate with you' and 'we don't believe in chronic Lyme'. Showed him my symptom diary detailing my good response to antibiotics, showed him lots of papers and abstracts demonstrating persistence of the Lyme bacteria despite antibiotics, showed him papers which showed his tests (which were all negative) were rubbish (53% sensitivity! utter pants). He did a neuro exam where he did the Rhomberg test wrong (my feet were about 6 inches apart) and ignored me not being able to touch my nose. Shutters were down, blinkers were on, no-one was at home. Pointless.

Got a western blot test done, via the Luton clinic- at Igenex laboratories in the states. It was IgG positive for Lyme (Western Blot, bands 31, 34, 41, 58). The IgM was negative and the IFA (Immunoflorescence Assay) was equivocal. For the uninitiated, this means that I had antibodies to Lyme bacteria, and those antibodies were the type seen in chronic infections. So I had been exposed to the Lyme bacteria, and had moderate levels of these IgG antibodies. It appeared to be an ongoing infection since I had a similar result back in 2008, but this time had an extra band- band 58.

It was a pity I was IgM negative, as the IgM antibodies are the type seen in acute infections, but apparently, for some reason, many Lyme patients never get positive results for IgM, and IgM can be quite transitory and fluctuate over time, sometimes re-appearing later in the the infection. As usual, Lyme does not play by the rules that other infections play by.

I couldn't take the Azithromycin for a month though, as I had bad palpitations the day after I'd seen the Luton Doc, so she said to not take it until my palpitations had settled for a month or she had seen an EGC. Got the ECG done at my local GP, and am awaiting cardiology appointment as it shows conduction problems. This is sometimes seen with Lyme and I am expecting it to resolve with treatment. I do get faint and breathless on exertion (and not even much exertion, climbing the stairs will do it). I showed this ECG to the Infection Doc at my local hospital but it was dismissed  as 'common in young thin women' - I'm 38, 5'5", weigh 10 st, so not that young or thin. They just have blinkers on and a total refusal to even consider chronic Lyme, so the suggestion that it could be connected to Lyme was not well received.

The Azithromycin, when I eventually started it, seemed to be the key- really helping (although there are obviously good and bad days). After 3 months treatment on this combo (and upping the amoxy to 3 g a day and artesunate to 80mg a day) I feel much better- the headaches have gone, tippy/dizziness much less, I sleep well 3/4 of the time, the random pains have lessened and I'm getting some quite good days with the legs. It still goes in 4-5 week cycles though, with 2-3 weeks quite bad, then 1-2 weeks quite good then a sudden deterioration. This is a pattern often seen with Lyme (no-one really knows why). 

Got a bit of a rash (slightly itchy, some were a bit like grazes) when I forgot my Azithromycin for a week. I've seen pictures of people having similar atypical rashes when on treatment:

Side of body

I scratched this one a bit

Shoulder


side of body

I've made an appointment in the US to see an LLMD there as my Luton Lyme Doc is unfortunately off sick, and they don't know when she can come back to work. So, off stateside in December- I'll let you know how I get on.

So, that's my Lyme mark II story. I aim to turn this blog into a website, the idea of that is so I can put up helpful things for other Lymies. I'll be writing summaries of various Lyme topics (in layman's terms but listing the scientific references), will put up templates for writing to your MP, symptom diaries, how to put things in writing for your medical records, ways to argue your case, a copy of my Lyme presentation, and my top tips for getting treatment and getting better. I'm not a Doctor, so any advice I give should be read with that understanding. I'm just a reasonably knowledgeable scientist patient.