Tidal wave

Well it's been quite an eventful week one way or another but not stuff I really want to write about just now. I have been upping the Samento and Banderol though. After I could tolerate 10 drops each time for a couple of days, I started increasing the dose exponentially so I'm now up to 25 drops of each in the morning and 10 drops at night with no extra effect. I am starting to see little improvement too, certainly a lot of the brain fog is lifting and I have slightly more energy.

Tomorrow in London is the PHE Conference on Lyme disease. What started out looking like a seemingly boring presentation of the same old same old in relation to the new Lyme unit being set up in Hampshire, now begins to look slightly more promising with the input of Lady Mar, the LDA and real live patients. I wish I could have gone but it is just too far and too expensive by public transport and driving on my own out of the question.  Several people from a group I belong to are going so I'm looking forward to their reports afterwards. PHE have promised some transcripts and videos afterwards but I admit I'm sceptical of some of their answers to questions about these provisions put to them in advance.

With various other pieces of research coming to light now and the recent statement regarding Lyme Disease and services in the HPA (Health Protection Agency) we can begin to see a tiny chink of light at the end of a very long tunnel. The tide is starting to turn for Lyme disease but I dont expect it to be even half way in in  my lifetime.

Herxing like Hell

Been back on the good old Samento and Banderol (herbal antibiotics) for a week now. I've got up to 5 drops a day of each and I'm permanently nauseous. The treatment protocol suggested by Dr Marty Ross a leading authority in Lyme treatment suggests starting at 10 drops of each TWICE a day and I can't even tolerate one quarter of this.  Presumably all this is a giant herx which rather points to there being a lot of Borrelia coursing round my system again.

I've started now as I have 5 weeks between craft shows so I don't have to work outside the house, however I would like to do some work indoors, out of the last 7 days I have achieved the equivalent about 2 days, not good. The rest of the time I am laid low with a permanent headache, fever, nausea, a rash, muscle pain and palpitations. Not good.

I'm going to persevere though as I'm sure if I can zap a few more of those pesky spirochaetes my overall health should improve and maybe my legs will start to work normally again. At the moment they are firmly switched off, the brain is willing but it's like the power supply just died. I've got an appointment with the NHS rheumatologist in a couple of weeks, wonder what he will have to say about the old legs.  Usually its  a case of 'oh well try and get some exercise,' he hasn't quite grasped that I am trying and I fail every time! Maybe I should start talking nerve damage and see what he suggests then. Meanwhile I'm just hoping I have the oomph to actually get to the appointment.

Yet another NHS rant....

Whoops they did it again..... and this time it's not anyone in this household but someone locally using the same GP practice and whose treatment, or rather non-treatment, has shocked us to the core.

About 2 years ago this lady pulled a muscle in her side moving something awkwardly in the stockroom at work. A few days rest with a couple of analgesics a day had failed to improve the dull ache she felt. Six weeks later and the pain was still there. her GP said it would take time to heal, these things always did. A whole year later she was still experiencing pain in the affected side. Still the GP recommended, gentle exercise and to stop thinking about it so much. Eighteen months later and the pain was worse, she became yet another heart-sink patient," keep on taking the pain killers; take your mind off it; maybe you're depressed, have some antidepressants" ad nauseum. A appointment with a second GP, the first being on holiday reinforced the 'non-treatment'. Maybe it WAS all in the mind.

Eight weeks ago when the pain at night was unbearable her husband said he'd had enough and took her to A&E. After a few blood tests and such like she was kept in and had an MRI scan. The next day she was informed that she had something seriously wrong internally, most likely cancer of the liver. The following week she underwent a liver biopsy and another scan. Four weeks later she was finally told they had lost the results and she must undergo another. Last week she was admitted again for the second biopsy. By now weak and quite poorly it was questionable whether she was fit enough to undergo it. She had yet another scan and more tests. The day of scan dawned and she was told early on that she wouldn't be having one. The doctor would be down later to speak to her about it. By then the family was distraught, finally in the late afternoon a junior doctor appeared and bluntly told her there was no point having any biopsies, the cancer had spread to the pancreas, was widespread throughout her system. She failed to take it all in and in case was not told the prognosis in layman's terms, her poor husband had to relay the 'simple' explanation, "He means it's too far gone, they can't do anything". Cue to go home, although it was suggested a couple of days in the hospice might 'help her sort herself out'. A planned course of chemotherapy at the local centre of excellence had been cancelled. 2It wouldn't do you any good". Home she went to face a bleak future, no sign of any additional treatments for the now numerous weakening symptoms.

This week the chemo team rang, "Where are you? You should have started treatment today". On being told that it was all cancelled as it would be pointless all that was rubbished, "Nonsense, we can make you feel more comfortable, deal with some of the symptoms and give you a bit longer with your family. She declined the opportunity unwilling to throw her hat in with the NHS any longer.

National Health SERVICE? If that's what they call service you can keep it.

The end of the Lyme

A couple of weeks ago I took myself off to see my Lovely Lyme Doc (LLD) in another part of the country. Alone. This in itself was a novelty, it was to be the furthest I have driven alone for 15 months. I took it slowly, arrived in time to have lunch in a wonderful cafe nearby and stock up at the Indian food shop around the corner. Thus fortified I sallied forth into the consulting rooms.

Apart from having a slight performance removing my clumpy, ankle-high walking boots, the consultation went very well. So well I had to stop and pinch myself afterwards to make sure I wasn't dreaming, and celebrate in style with the worst plate of supermarket fish and chips I had ever eaten. That brought me back to reality.

In a nutshell I am improving, vastly and quickly now too, every day brings some new realisation or surge of energy. A greater improvement than the LLD had dared hope and certainly better than I had ever dreamed about. I'm losing weight too, freed as I am of some of the medications that have coaxed me into life the last 16 years, and which I KNEW were causing me to gain and then retain weight. The end is beginning to be in sight. I remain on the treatment until May, when the sun and our family holiday in Corfu will pose problems anyway. This time it will be different however, I won't re-start unless I start to experience severe symptoms again, in which case I'll be racing back to LLD and begging for more antibiotics.

How long this break will be is unknown, it could be weeks or even months before those little hidden bugs come creeping out of their hiding places and make their presence felt. The worst case scenario is that after 4 weeks I will be sick again as I was after last year's holiday, the best case is that I remain well indefinitely, in which case we will know that all those horrid spirochetes have been zapped into oblivion.

Some of the symptoms will never completely go; WH asked LLD last visit what the prognosis was and was told a 95% recovery was possible in theory. This passage from Todors Online Journal of Bacteriology explains why:

Several antibiotics are effective in the treatment of Lyme disease. The present
drug of choice is doxycycline, a semisynthetic derivative of tetracycline. Even
patients who are treated in later stages of the disease respond well to
antibiotics. In a few patients who are treated for Lyme disease, symptoms of
persisting infection may continue or recur, making additional antibiotic
treatment necessary. Varying degrees of permanent damage to joints or the
nervous system can develop in patients with late chronic Lyme disease. Typically
these are patients in whom Lyme disease was unrecognized in the early stages or
for whom the initial treatment was unsuccessful.

My GP remains supportive even though she is not allowed to prescribe my treatment on the NHS. Odd really, as she can see that I am so much better than I was 12 months ago. Thank goodness I found out the real cause of my illness when I did. The state I was in last year leads to me think that by now I might not have been around.

Who cares about the odd 5%? You've got to agree, 95% of life is a much better prognosis than none at all.