Anyone with leptospirosis or chronic fatigue like lepto symptoms?

Posted , 8 users are following.

Hi all,

I have been ill for the past 9 months following a trip to Cuba during which I had 'travellers tummy'. This cleared up after a week and then 10 days after I returned home I suddenly came down with a mystery illness.

Heart flutters and tachycardia, weak/heavy chest muscles (resulting in a feeling of 'air hunger' where I could not take a deep enough breath for 2.5 months), dizziness, numbness in arms, legs and my end two fingers on both hands, pins and needles, a feeling of 'walking through treacle' when trying to move as my legs were so heavy. A feeling of disequilibirum when I did walk as if one leg was shorter or the ground was 'spongey'. The floor appeared to move beneath my feet on multiple occasions. I felt nauseas as if travel sick often. I also had a feeling of whole body malaise and tremulousness made much worse if I watched TV, used a computer or tried to focus on people's faces as they spoke. The world looked constantly warped as if I was drugged. I shook internally constantly (as if my organs were shaking), I had sensations of 'energy/electricity' coursing through my body just under my skin which was extremely unnerving. I also had intermittent mild IBS type symptoms and feelings of having a 'sudden adrenaline rush' at times upon standing, sitting and when falling asleep. I developed extreme hypoglycaemic like issues and have constant sharp pains in my ears.

I was hospitalised for a week in a side room after 2.5 months of this as I had developed slight abdominal pain, kidney and lower back pain and conjunctivitis too. During my time in hospital terrible muscle pain in calves set in (as if I had ran a a marathon) alongside wide spread joint main - particlaurly painful in fingers/hands.

My lab results showed a slightly elevated white blood count and high levels of anticardiolipin IGG. I was also found to have a zinc deficiency. My cortisol levels were also consistently very high but were successfuly suppressed by dexamethasone.

This week, 9 months into illness, I have tested positive for leptospirosis antibodies. My doctor is not convinced it can still be an active infection but I have read it can be a chronic condition similar to lyme disease.

Does anybody else have experience of chronic leptospirosis? Or able to relate to leptospirosis presenting with symptoms similar to mine?

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  • Posted

    Sarah,

    Hi there! I've been battling health issues since my return from Uganda in May of 2012. It appears that I have post-infectious chronic fatigue syndrome, triggered by my bout of malaria. For some time I was adamant about still trying to find "active" malaria in my system, but even in having my bone marrow screened, there is no evidence of continued/active parasitic involvement in my system. That said, I'd agree with your doctor's assessment, that you no longer have anything active in your system, but rather you have residual damage caused my the infection.

    I've learned that both lyme and Q fever, can trigger chronic fatigue syndrome. And that any febrile illness can shock your body into this condition, to which there is no cure - at least not yet.

    That being said, it could just be that I need to be dewormed. I'll be taking praziquantel medication at the end of this week to see if that does the trick in helping me to regain my health.

    Best of luck to you in finding answers!

    Katrina

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  • Posted

    Hi there Sarah, 

    Unfortunately I am only seeing your post now and do not know if you will still see my reply. I have had chronic Leptospirosis since 2011. Your symptoms seem all too familiar. It would be great to know if you are feeling better and what you did to feel better. Finding a doctor with knowledge of chronic lepto and how to treat it is a mission!! I have been on pulse antibiotic therapy since 2013 (7 days a month of different antibiotics). I am definitely better (Before I started treatment I could hardly walk some days and often had to be helped to bathe), but it's definitely an on-going struggle. But hey, every day is a new day! I have recently seen that there seems to be a lot of people who get Lepto in Mexico in its chronic form as it is not treated in the acute stages. I do not think I am allowed to post the details of my doctor here and do not want to break any rules. Would be great to here how you are doing though. 

    Warm Regards from South Africa,

    Marina

    x

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  • Posted

    HI Sarah

    I have been suffering from your (almost exact) list of symptoms, including short and long term memory loss and problems with concentration for the last 18months.

    The only diagnosis so far was fibromyalgia/CFS/ME as all regular blood results have been for the most part normal.

    I found a new doctor who tested for leptospirosis and it came back as positive IgM (active infection?) and am currently being treated with antibiotics in hospital.

    I live in South Africa and haven't been to any high risk countries so we are not sure how I got it. I've only just started my research into it, but this seems like a good place to get some general information persistent human leptospirosis http://www.leptospirosis.org/medical/phl.php.

    It seems that the problem is that the bacteria goes into hiding in your brain and eyes, because the immune system is less active there.

    Also looking forward to a new day Marina!

    Marna

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    • Posted

      Hi there Marna, 

      I would love to chat to you some more and hear hw you are, which doctor you are seeing, etc. I am not quite sure how to contact you privately on this forum. Do you know? Hope you are feeling much better. Glad you have found a doctor who could help you! smile 

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  • Posted

    Hi Sarah,

    I too have had ongoing leptospirosis symptoms and problems since 2009.

    A specialist has since diagnosed me with post infectious fatigue symptoms with chronic headaches.

    My life has been a constant struggle since I contracted this illness, I've had to change careers, hours I work, taken untold as sick leave and relied to much/ heavily on opiate usage just to survive day to day.

    Would love to join something like a Facebook page for education/ support. Does anyone know of any or could kick one off

    I am in...??

    Craig

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  • Posted

    Hi Sarah. Hope you are doing better now. Did you ever find a treatment.
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  • Posted

    Hi everyone

    Please can you re post if you ever got your symptoms resolved and how, has I am currently suffering from these symptoms and I’m finding life very difficult, just wondered how everyone ended up better or not ?

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    • Posted

      Hi there chris65801. Did your symptoms start after being infected with Leptospirosis? 7 years later I'm still picking up the pieces. I now have, amongst other things, epilepsy as a result of the lepto.

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    • Posted

      Hello anewday 

      My experience of Leptospira has not been the box standard one with flu symptoms and then the second phase with organ problems etc

      My experience has been similar to the original poster Sarah,I’ve had all kinds of weird things going on for 6 months awful unbearable feelings, vision problems, hallucinations aches on joints and muscles, nerve pain etc it’s an on going nightmare. I’m still having symptoms and finding it difficult to get on with my life and wondered how long or if the syptoms do eventually go away? 7years wow what problems are you still haveing ?

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  • Posted

    I got sick in 2011 while living in another country. I was never treated or diagnosed. I had fever, body ache, stomach pain, nausea, extreme fatigue. I was so weak I could not get up, and when I did I could barely walk, dizzy and felt like I was going to pass out and it felt very weird when I walked. I may have forgotten other symptoms, my memory is not good and it’s been so long now.

    I was never treated or diagnosed. After I was sick I continued to feel extreme fatigue along with brain fog, poor memory, lack of appetite, depression, anxiety, problems sleeping. I lost interest in the things I used to enjoy. I had a hard time forcing myself to go to work,  I kept getting sick and tests showed I had kidney infection every time.  I was given antibiotics for it and went back to work. I couldn’t handle it anymore, missing so much work I was afraid I’d get fired and I had a mental breakdown and quit my job.

    It’s 2018 now and I am still having the same problems. The brain fog is not as bad but sometimes I can’t think clearly, it’s like my brain does not function properly and there are times where there is this feeling in my head like a burning or something that I feel on my brain. I have some good days where I feel I am fine and getting better, and the next day or a couple days later I’m not ok. Sometimes I sleep too much throughout the day. I have not been to a doctor in a long time, so I do not know if I still get kidney infection. 

    I don’t know what kind of doctor I should be going to that can help me or what kinds of tests will show that I had or have Leptospirosis.

    I can’t keep living like this, but I don’t know what to do to get better. On top of the depression I’m having for no reason I’m feeling more depressed because I am depressed and tired and sick. 

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  • Posted

    Hi all, I am the original poster, sorry have only just spotted notifications on this as it has been a couple of years since my original post! 

    Sorry to hear so many still struggling, interesting so many with similar symptoms and a positive lepto blood test like me. 

    I was given 4 weeks of oral doxycycline by hospital consultant which did improve my muscle/joint aches to a degree. I then found a private clinic that treat chronic fatigue syndrome and have been following a rehabilitation plan with the for a year. Many of my symptoms have greatly improved as a result however my stomach issues have become gradually more severe (including developing gerd and oesophagitis) and an aching in my fingers continues. Other symptoms ‘flare’ every 6-8 weeks. As such I have recently had a referral to London hospital tropical diseases who found by blood test that I have strongyloides parasite. (Many, many stool tests over the yrs failed to pick it up). I will receive treatment in a couple of weeks. 

    Hope this helps somebody!

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  • Posted

    If anyone wants to send me a private message I am happy to share my instagram handle so you can follow my recovery further and I can share the name of the UK fatigue clinic who have saved/restored my life! 
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