Help desperately required

Sorry in advance for the long post but I am hoping someone can help my husband and I.

10 years ago my husband developed the 'bullseye' rash after being bitten by a tick on moorland. Hospital didn't recognise it and neither did we as Lyme disease wasn't well known then. He was diagnosed with an allergy rash and it disappeared after a couple of weeks. This was just the start of the most traumatic journey for us. Within months, he developed health problems - vertigo, vomiting, rashes, headaches, joint pain (diagnosed as gout). He was hospitalised on several occasions as his symptoms were so severe that his body went into shock. He was given different diagnoses but his main symptoms were either vertigo and vomiting or gout. Then one day he realised he had no feeling in the right side of his body. He could move his limbs but could not detect temperature (almost scalding himself in a hot bath when he put his right foot in first) and if he was given something to hold with his eyes shut, he could not tell what the object was. He also developed a rash down his right forearm which was diagnosed as a rare acrodermatitis chronica atrophicans but again no-one made the link with Lyme disease. Over the last 10 years his health has deteriorated and he has had a number of unusual symptoms. Finally, over 18 months ago, he started having 'head rough' attacks with violent vomiting then in April 2019 he was found collapsed in a car park in the Derbyshire countryside and was ambulanced in to our usual hospital. He had vertigo, vomiting and crippling headache - he was mis-diagnosed with migraine!! After this collapse, I noticed new symptoms - slurred speech, lack of balance (he was banned from using the hot oil and water testing baths at work as they were so concerned about his safety) and then he had another attack in August. In September we went to Majorca and it was an eye opener for me. We both work full time and he spends a lot of time in his room watching TV, surfing the net, etc and suddenly we were together 24 hours a day and I realised that he couldn't walk without shuffling his feet, frequently lost his balance, he had lost words, couldn't speak clearly and couldn't 'gather his thoughts'. He would ask me the same question time after time and didn't seem to be processing the information given - it reminded me so much of my Mum who has vascular dementia after a stroke. Whilst on holiday, he collapsed in the hotel bathroom and had to be hospitalised. Again we were given the diagnosis of vertigo. Two days later we flew home and he drove from the airport despite my protestations that he was not fit - his driving had become increasingly scary since the attack in April and I was banned from driving after a cardiac event 4 months previously which had made me black out. On the way home in the early hours, he almost ran us off the road several times and then took the most bizarre route home as he had obviously forgotten how to get there. Two weeks later at work, he had a stroke, lost the use of the left side of his body this time and also his speech. His boss called an ambulance and rang me to let me know what had happened - I insisted that they bring him 30 miles to the hospital where I work and where he has been admitted many time. He walked from the ambulance and insisted to the doctor that he was OK - again a diagnosis of migraine was given - until I put my oar in and told the doctor what had been happening for 10 years. He changed the diagnosis to potential TIA. He was allowed home and we had to go to the TIA clinic the next day. Through all this, they have only ever done CT scans to see if he was having a bleed on the brain and all of them were normal - this time, they did an MRI and found he had had 15 strokes in the previous 10 days and there was evidence of much older strokes potentially going back over the previous 10 years but obviously they can't be sure. They weren't haemorrhagic strokes but thrombotic strokes so wouldn't show up on CT. He was admitted and put on blood thinners and allowed home after a week. 3 weeks later I came home from work and his speech was unintelligible and his balance had gone. Rang an ambulance and paramedics said all his obs were normal but they took him to hospital anyway - he was kept in and two days later had another stroke on the ward - which was not picked up despite him vomiting for almost 10 hours!! I had to tell the staff that he was having another stroke. He was too sick for an MRI scan which was carried out 2 days later and showed he had had another 4 strokes. He spent 2 weeks in hospital and then another 4 weeks in stroke rehab where he suffered another 5 strokes at the end of November. He now has cognitive impairment, left side neglect and other problems. He cannot read as he claims 'it is a foreign language' - this from a man who built a two storey extension onto our house and did all the plumbing and electrics himself after doing all the research on the Internet and could read a page in a car manual and then go outside and fix his car without referring to the manual again. Now he can't operate our new oven as he can't follow the manual.

When he was in rehab, I came home exhausted one night - I work for the NHS and was going into work for 6am, working until mid-afternoon, then going on to spend hours with him playing strategy games and card games to try and help his brain. I got home one night at about 10pm and decided to check my emails before trying to sleep. I opened Yahoo and there was an article on how sheep ticks had migrated to humans - I work in genetics research so decided to quickly read the article - as I was reading it I realised that Ian had been tested for Lyme disease 10 years previously but it had come back inconclusive (not surprising). It festered in my brain and I spent the next day doing a lot of reading but could find very little on Lyme disease causing strokes (I now know it is not the Lyme disease causing the strokes but the damage it does to the heart that causes the clots that injured his brain). It was almost like a epiphany - I asked to see his consultant in rehab but only got to talk to the registrar who listened and said he would email the consultant that day. Explained that I was possibly barking up the wrong tree but that they wouldn't have any information in his notes re Lyme disease as he was seen in a different county and they would have to send for his notes. I did a lot of phoning to check his notes were still available and gave all the information to the consultant. Whilst in rehab, Ian had 5 more strokes and I spoke to the registrar in hospital about Lyme disease - think I was beginning to piss them off!!!

Long story now short and thank you to all who have made it this far - his rehab consultant took me seriously and explained he had had Lyme disease as a child so was very interested - he arranged for Ian to have a lumbar puncture as well as other cardiac investigations - we had the results back two days ago - he is positive for Lyme disease and has been for 10 years. One of the biggest problems is seeing different specialists for different symptoms and no-one joins the dots or sees the bigger picture. Also not helped by a husband who is very economical with the truth when it comes to anything private. My big question now is the specialist is recommending that he is treated with an extended course of Doxycycline but I have been reading that late-stage Lyme disease needs IV Ceftriaxone + others if the disease is still active after a three week course and obviously he will be retested but we know that the tests are notoriously unreliable. I really could do with some advice from others that have been through this late stage (chronic) Lyme disease and what treatment was given and did it work? They want him to stay on all the other meds even after the treatment, which I am quite happy with but they now think that he has Lyme carditis which is what has caused the clots. He has a loop recorder fitted for constant heart monitoring and there is talk of fitting a pacemaker.

Thank you in advance for any help given and, again, apologies for the long post but it was important to get the history down. Has he just been unlucky? I am reluctant to know that there was something we could have done earlier as it won't change the outcome for him - he is brain injured and will never drive again or be able to live independently - he is only 55 and doctors are amazed that he has survived the 24 strokes he had in a 3 month period + all the ones he was having before they knew he was having strokes, any of which could have killed him. I am grateful he is alive and that the essence of him is still there - life for us now is what it is and it could have been a lot worse.

Is there anyone out there that has been through the same thing - I know stroke as a result of Lyme disease is very rare and that only one of 4 consultants has taken it seriously (Thank God)? I would be grateful for any contact from people going through the same thing.

Thanks again for reading this and possibly sharing experience and advice.

Thank you so much for your quick response. We are actually in the UK where there is even less information or specialism in Lyme - in fact, until about 8 years ago, it wasn't even publicised as there were so few cases actually seen here which is why it was probably never picked up in its early stages. We live in South Yorkshire but are literally on the border with Derbyshire and the Peak National Park where we had been walking when he must have got bitten - there are herds of wild deer on the moorlands where we had been. Testing in the UK is limited to ELISA and Western Blot tests which I know are notoriously unreliable (hence his 'inconclusive' result in the beginning). I think in the US you have the CERES test, which I mentioned to one of the Registrars who just laughed and said 'You won't get that in the UK'. I know I have a battle on my hands but I always have to go into battle fully armed - which means for me that I have to do my reading and my research. I know I am fighting for my husband's life but also his quality of life. At the moment we feel very much abandoned - the Community Stroke Team were involved for about a month but we haven't seen anyone now since February. He was having physio, speech and language therapy and Occupational Therapy but it's almost like because he isn't at death's door or severely disabled they have all backed off. I first mentioned Lyme disease to his consultant in November 2019 but it took until March to get the lumbar puncture. My husband wouldn't even speak to the consultant the other day when we had a phone consultation, as he 'didn't see the point'. So I am battling the medical profession and my own husband! Fortunately, I am made of sterner stuff and won't give up.

I work in Genetics Research (mainly cancer studies and Huntington's Disease), so my job is researching, reading and data collection and analysis. I am 66 (yes, he is my toyboy - we have been together since he was 23) but am still working full time for the NHS - partially out of choice because I love the challenge of my job but also financially - pensions in the UK are pathetic. So I am more than prepared and happy to put the time in researching and reading anything that will help him.

I am off work at the moment on sick leave as have had major surgery 10 weeks ago but thanks to your response, I now have something to challenge my brain and get it working again.

Dr Lambert is the Dr I’m thinking of.


Edited to add - I have typed his full name because he is 'out in the open' with treating lyme.

Wow, so sorry that you both have had to go through all of this.

I'm not a medical expert, but anecdotally speaking, Lyme can be very hard to treat when someone has been infected that long. It seems that from most of the experiences I've heard over the years (mainly from reading boards like this), people who were infected long term tend fail treatment with doxycycline. I have heard theories that doxycycline working depends on a relatively competent immune system to sweep out the infection while some bacteria are killed and others are just "stunned." Once someone has been infected a long term, the immune system doesn't seem to be capable of doing that in many people.

At least in the US, among traditional infectious disease doctors, IV Rocephin (Ceftraxione) is considered the be the "big guns" for neurological Lyme and may be worth a shot, if you can get a doc to prescribe it for him over there...

Dr. Neil Spector had Lyme carditis and had a heart transplant. He wrote a book about it.
https://www.lymedisease.org/neil-spector-focus-lyme-video/

The book is called “Gone in a Heartbeat.”
https://www.amazon.co.uk/gone-heartbeat-physicians-search-healing/dp/1936946424

“ At least in the US, among traditional infectious disease doctors, IV Rocephin (Ceftraxione) is considered the be the "big guns" for neurological Lyme and may be worth a shot, if you can get a doc to prescribe it for him over there...“

Traditional ID Docs aren’t knowledgeable with treating chronic Lyme.
A LLMD is needed.

IV rocephin is not going to be enough for treating chronic Lyme and the coinfections that come with it.

Hi Jennit,

Not sure where you are in the UK but there’s a clinic in Hemel Hempstead called Breakspear Medical, they have 3 Lyme doctors who are registered with ILADS. It’s a very pricey place but they offer IV antibiotics or combination antibiotics and herbal stuff. They can also arrange to have bloods sent to specialist labs.

Sam

Your welcome. I can’t really comment too much because I’m still in treatment myself but just know that you can get better from this. There are lots of horror stories on the internet but it is very treatable with the right sort of doctor.

I think you can still use Doxycycline no matter what stage your in, I used it it in combination with other antibiotics.

Here’s a useful website for different treatment info;

https://www.treatlyme.net/

It might also be worth getting standard bloods done for vitamins etc.. deficiencies in things like b12 & folate can cause similar symptoms.