Health & Family Lyme disease

I've selfishly changed the title of this thread as the conversation has evolved. I've provided a lot more detail than I expected to and with Tilley's input, I think it has started to introduce the topic of Lyme disease quite well. I hope those who have alreadly posted here dont mind, but given that all posts are to do with Lyme, I think it gives a bit of an insight to lyme disease... and it needs as much awareness-raising as possible in Australia because we're along way behind the pack. My wife and I really benefited from reading other people's snipets online, so who knows, it might even be of use to someone. I hope this is okay with everyone.

LYME DISEASE

My wife has been chronically ill since she was 12 (now 37). She's been diagnosed with everything from chronic fatigue syndrome to MS and everything in between. While at times she will be appear to be functioning well, she'd often crash, not long after she left uni she was bedridden for 6 months. All her adult life she'd be up and down with all sorts of complications, pains etc.

Linked to this is the fact that my 2 young daughters have always had very bad food intolerances and gut problems. Our youngest didn't sleep for the first 18 months until we found an amazing dr who suggested we take her off all fruit and veggies. As strange as it sounds she improved over night so she began an elimination diet where she ended up eating only 5 foods and a nutritional supplement. Although she's improving she's still very limited in what she can tolerate. We always thought their health was related to the health of my wife but couldn't join the dots until we began working with an amazing biomedical dr in Sydney.

At the start of last year my wife had bloods sent to germany and was diagnosed with lyme disease. You might have heard of it... apparently it doesn't exist in Australia and certainly isn't recognised by the Australian medical profession, yet totally accepted in Europe. My 2 girls have also been diagnosed with it as it can be passed on from the mother. And the bacterial meningitis I had a few years ago? you guessed it - lyme can be a form of STD.

Last year my wife began a ridiculously expensive treatment plan for a few months but it made her so sick she couldn't get out of bed, let alone work. So after loads of research we decided at the end of last year to go to Germany for treatment. Put simply, we had tried every other course of action, and been told by so many drs that they didn't know what was wrong, or that it was in her head, that this was our only hope.

Anyway, we took the kids with us and my wife spent 16 days in a clinic in Germany. I also spent a few days in there to fix some ongoing issues from the meningitis. After many months of follow up treatment back here in Australia the improvement has been amazing. This Monday she commences a full-time job, something she hasn't been healthy enough to do for about 10 years.

We estimate the cost of treatment over the past 12 months to be around $80,000 out of pocket, including the expense of travelling to Germany, the cost of the clinic and the pre and post treatment. However, it's true what they say that money isn't everything. We're fortunate that we were able to afford it, many other Aussies who go have to sell their home or get personal loans to fund their treatment or not go at all and live with the hideous disease.

Even though follow up treatment has concluded, there's still lots of work to be done. She's ridiculously careful about what she eats and takes a huge amount of supplements... And our 2 girls still have lyme, although we're trying to manage it locally. My meningitis symptoms have reduced significantly as Ive finally eradicated all the lyme bacteria.

My biggest problem now is trying to keep up with her as she makes up for 25 lost years!

 

Wow. Someone who's overcome a real problem to be able to return to 'normal life', my heart truly goes out your family.

A lot of the others listed in other threads are first world problems...

 

Wow, thats amazing. I saw a news article about lyme disease a few months ago and the sufferer had the same barriers with AU doctors saying it didnt exist in Australia and refusing to treat it. Was that your wife by any chance?

Great to hear things are back on track for her, you and the kids

 

A truly inspirational story.

I hope you have supportive family and friends. Onwards and upwards

I recently posted my story of a failed business where we lost $1m insignificant compared to what you have endured I am sure.
What was worse than losing the money was my husband's health, he suffered a nervous breakdown. Money is nothing without health. The business was his baby and he built it up from scratch, 11 years of slogging working crazy hours, all gone but many lessons learnt.

If you want to read the full story Just do a search, under the heading ..How many hours a week do you work.

All the best..

@D.T. were you referring to my story? Just make sure you read the last paragraph that should help you.



MTR

 

Thanks for your kind words.

Dave, Lyme is finally getting a bit of a profile in the media and there are a few stories popping up about it from time to time. 60 minutes had one a while ago about the German clinic we went to. It has a ward solely dedicated to Aussies because so many are going over for treatment. When we were there my wife made some great Aussie friends that she's still very close to. So no, it wasn't my wife on tele but probably a very similar story.

MTR, our friends and family have been fantastic, although something like that (and Im sure what you went through) really shows who's there to support you. Most are just really happy that she's improving so much because they know what her health has been like for the past 25 years. The biggest challenge for her was constantly being told by medical professionals that there was nothing wrong with her, so owe a lot to her amazing dr who didn't give up in search of the cause.

MTR It was actually your post that got me thinking. I'd imagine what you went through was so much more than a financial loss, so please believe I wasn't trying to compare the two, although Im sure there'd be many similarities. I would think there would be enormous pressures on health, relationships and self that would go with losing a business so well done on such a remarkable recovery.

 

Thanks for giving us the human side of the journey

 

Thanks, for your comments.
Appreciate you sharing your story.

MTR

 

Incredible story Allgood. Hopefully it's onwards and upwards for your family now. What plans have you got now that your wife is feeling better and ready to party? : )

MTR, I didn't hear about what had happened with your business. Hope your hubby has been able to move forward and things are much better for you now. I know the stress would have been enormous.

 

Going strong, we have recovered from this disaster.
Thanks, you can read it on another thread as mentioned

But this thread is about allgood and their story, quite amazing

MTR

 

Hi Allgood and thanks for sharing your family's' story, fight against Lyme disease. Inspirational.

For everyone who does not know much about Lyme disease. It' s other name is neuroborreliosis. The bacteria that causes is spread by ticks and symptoms are varied from mild skin irritations to serious neurological pain.

Allgood, interesting that your wife was diagnosed with MS disease in Australia, because lately in Europe they have started to suspect that MS disease might be caused by same bacteria. Previously the cause of MS disease has been unknown. Also Lyme disease is related to syphilis, even if they are two completely separate diseases that they are somewhat related.

 

Hi Tillie,

The MS link is interesting. She's also been diagnosed with rheumatoid arthritis but since treating lyme the issues in her hands have subsided. She's still battling some confections like babesia but getting on top of it all.

My hangups from meningitis were extreme sensitivity to light, brain fog and headaches which have also improved since my lyme treatment. They say everyone reacts differently to lyme because it depends on which part of the body it infects so there's probably a huge amount of mis-diagnosis out there.

You seem to know a lot about it, do you know someone how has had a similar experience or do you work in the medical field?

 

Hi Allgood,

Lyme disease certainly is one of the most misdiagnosed disease because as you mentioned, everyone reacts differently. Some people gets only skin rash, some are hospitalised and almost paralysed and some can get everything between these two extremes.

The unfortunate reason that I know so much about this is one of my best friends, who was diagnosed a couple years ago. She is lucky that she lives in Europe, where awareness and treatment of Lyme disease is on the different level than here. Luckily she was diagnosed quite quickly (only after 6 months of agony) and treatment worked it's magic. Like your wife she is back at work now full time and symptoms free. By the way my friends' symptoms were similar as in rheumatoid arthritis, but her blood test result for arthritis showed to be negative.

Fortunately my friend remembered a tick bite and when he finally mentioned that doctors put 1 + 1 together.

 

Tillie,

I'm glad your friend has recovered. You're right in that the Europeans have a really good handle on it, compared to us in Australia where its not even recognised. My wife was emotionally very strong throughout the whole ordeal but the thing that bought her undone was when the big German Doc said 'Right, und vot can ve do vor you?' to which she said 'I have lyme disease' and he said in his big booming voice 'ok, that's easy fixed, vot else?' After fighting for a diagnosis for quarter of a centuary she couldn't believe what she was hearing - despite travelling to the other side of the world in the hope of hearing those exact words!

 

...I've selfishly changed the title of this thread as the conversation has evolved. I've provided a lot more detail than I expected to and with Tilley's input, I think it has started to introduce the topic of Lyme disease quite well. I hope those who have alreadly posted here dont mind, but given that all posts are to do with Lyme, I think it gives a bit of an insight to lyme disease... and it needs as much awareness-raising as possible in Australia because we're along way behind the pack. My wife and I really benefited from reading other people's snipets online, so who knows, it might even be of use to someone. I hope this is okay with everyone.

 

Hi Allgood,

Sometimes in really lucky cases especially if given at early stages of the infection even right antibiotics can fix it.

Curious to know what have Australian doctors said to you and your wife after your successful trip to Germany? Still no recognisantion of the disease?

Your wife has to be amazingly resilient and a strong person to be able to put up with misdiagnosis and doubting doctors, who are telling her that it is all in her head. My friend got a fair share of that as well and she started to doubt her mental health as a result. The relief was enormous when one doctor realised to ask if she remembered to be bitten by tick or have been in the area know to have a lot of these specific type of ticks. The major difference was that my friend it lasted only 6 months but over 25 years in your wife's case.

I am so happy to hear that she is now feeling so much better and able to live normal life again.

 

Over the years she's been to so many drs its not funny, not seeking a lyme diagnosis but trying to find what was wrong. So many times we thought we had something to work with but turned out not to be what they thought. She's written off most of those drs so they're probably not aware of her treatment or success. I know the head of the NSW Infectious diseases unit is dead against the concept of it being in Australia because of a study done years ago but it only tested for one strain. Although just recently others have found some evidence in ticks that another strain might be present so we'll see what happens.

Not everyone has had the level of success that she's had after treatment. Obviously its best to get it early which she didnt do but I think a big part of her success was that she'd worked on so many other aspects of healing so the last piece of the puzzle was killing the bacteria over there. In the leadup she'd spent a lot of time working on things like histamine levels, mineral deficiencies, diet and gut health that others learn about over there then have to implement on return so she was ahead of the game abit.

For the most part she was diagnosed with Chronic Fatigue syndrome (which is probably a sympton of illnesses like lyme that attack the autoammune system) so she was trying to manage CFS... eating carefully, not overdoing exercise or physical activity, sleeping (lots!) and generally operating at about 50%. She's always been a high achiever but she'd pay the price by crashing and ending up bedridden for months. Childbirth put a huge stress on the body and things went down hill a bit after that.

Anyway it's all happy days now, and I guess like a lot of things, you dont really realise how big a deal something is until you look back and think 'holy crap!'

 

If I were ever faced with a baffling condition, I would make a trek to Cairns to see Dr Phillip Marshall, a physician at Cairns Base Hospital. He is the most exceptionally knowledgeable physician I've ever seen.

 

A friend recently went thru a major fight with her doctor to get tested for Ross River fever - which he diagnosed as everything else under the sun for months as "Ross River is not known in our area" ... lo and behold ... finally he gave in and guess what she had!

An important lesson that doctors don't always know best - as they are only human - and it's good to do your own research if you're not happy with their result.

Great story btw - and hope the medical fraternity wake up to themselves before much longer as, with the freedom of international travel, anything is possible even if you've not travelled yourself

 

My grandad always use to say "Not every Doctor came top of their class".

Glad to hear your family have had a positive outcome Allgood and finally been able to put a name to the illness. Having gone through a period myself with a mystery illness where the Dr's thought I had an auto-immune disease I know how difficult it is just not knowing.