Most probably have borreliosis

tara73

I got the diagnose last tuesday that I most probably have borreliosis.

I'm in pain for the last two years, all doctors presumed it's psychosomatic, I believed it too. Since approx. 1 year I also have more and more pain in my joints. Since then I knew or felt it can't only be psychosomatic.
Docotrs surely suspected rheumatism, I was tested, but no inflammatory processes in my blood samples were found.

So my pain got worse and worse and from information on the internet the symptoms to borreliose were there. So I went to this specialist, and she was able to see the borrelios in my blood under the microscope, it's called dark field microscopy.

I'm now taking antibiotics but I'm in so much fear that they damaged my muscles and joints already for the long time it was not detected and now it will never go away.
Are there people out there who are/were in a similar situation and can give me a bit of hope that I will get back on track again and my body is not destroyed for the rest of my life? thanks.

tara73

sorry, I'm not sure if borreliosis is the correct word which people identify with this illness, I think the more common word is Lyme disease.

Graces7

tara73 wrote: »

sorry, I'm not sure if borreliosis is the correct word which people identify with this illness, I think the more common word is Lyme disease.

Getting a diagnosis is a wonderful thing so lean on that and look forward now?

This is a huge, huge step forward, believe me. And a very strong and positive one, that will lead you to proper treatment and a move towards better health.

Rest in that.

Holy Diver

Graces7 wrote: »

Getting a diagnosis is a wonderful thing so lean on that and look forward now?

This is a huge, huge step forward, believe me. And a very strong and positive one, that will lead you to proper treatment and a move towards better health.

Rest in that.

Proper treatment for Lyme disease? In ireland? Are you having a laugh?

Graces7

Holy Diver wrote: »

Proper treatment for Lyme disease? In ireland? Are you having a laugh?

No I am not! REALLY! I had three decades of wrong diagnosis with M>E in the UK then laughed at when it did come in

Been sneered at literally here in Ireland many times by drs too..

BUT I had the sense to seek online support groups of folk suffering similarly who have all the help there is and understand and can give support.

Which is what matters.

As far as I can see. Lymes and M.E have a lot in common.

And at least the OP HAS a name for it and will no longer be treated as if it is AITM, which is more than most of us with M.E ever get!

So onwards OP.. There will be support and a lot of info out there.

Holy Diver

Graces7 wrote: »

No I am not! REALLY! I had three decades of wrong diagnosis with M>E in the UK then laughed at when it did come in

Been sneered at literally here in Ireland many times by drs too..

BUT I had the sense to seek online support groups of folk suffering similarly who have all the help there is and understand and can give support.

Which is what matters.

As far as I can see. Lymes and M.E have a lot in common.

And at least the OP HAS a name for it and will no longer be treated as if it is AITM, which is more than most of us with M.E ever get!

So onwards OP.. There will be support and a lot of info out there.

That is all well and good - and I agree with what you are saying re support groups etc but let's be clear - it is a long way off what you could possibly equate to being "proper treatment".

Best of luck anyway OP

njs030

It depends how long it's been developing but like with all illnesses try not to over research it on Google or at least don't jump to worst case scenarios.

It can be treated with a combination of antibiotics, are you seeing an infectious diseases specialist? If not ask to be seen by one immediately.

Graces7

Holy Diver wrote: »

That is all well and good - and I agree with what you are saying re support groups etc but let's be clear - it is a long way off what you could possibly equate to being "proper treatment".

Best of luck anyway OP

There are no real treatments for M.E; thankfully more so with Lyme's. Far better than not knowing what on earth is wrong with thee... When I got my diagnosis, the sweet relief, even while i knew fine well that most drs do not believe it exists let alone what to do with it.

But then I gave up on drs way back. I really did.

Graces7

notjustsweet wrote: »

It depends how long it's been developing but like with all illnesses try not to over research it on Google or at least don't jump to worst case scenarios.

It can be treated with a combination of antibiotics, are you seeing an infectious diseases specialist? If not ask to be seen by one immediately.

So glad there is a protocol for this. So very glad OP ..

tara73

Holy Diver wrote: »

Proper treatment for Lyme disease? In ireland? Are you having a laugh?

"funny" thing is I'm almost sure I got the sting years ago in Ireland, but living in Germany now, so get treatment here.

but please don't think the doctors here and the health system is as glorious as it is it's reputation. it changed a lot in the last 10 years and developed in an enormous profit machine most people who fortunately don't have anything to do with it can't imagine. the patient is not coming first anymore, it's the profit, profit, profit.
Just if you are 'privately insured' you are on the lucky side, but if you're 'normally' insured you don't necessarily get the right treatment, you most probably get the treatment which brings the most money for the doctor or hospitals or you get no real treatment at all!!
Keep in mind I have the pain for more than 2 years and no public doctor diagnosed it. Had to go to a private doctor and pay additionally to get the diagnosis from her in half an hour (with the blood sample examined under the microscope).
It's purely scandalous to me.

tara73

notjustsweet wrote: »

It depends how long it's been developing but like with all illnesses try not to over research it on Google or at least don't jump to worst case scenarios.

It can be treated with a combination of antibiotics, are you seeing an infectious diseases specialist? If not ask to be seen by one immediately.

you are very right, I stopped googling it which I did a lot in the first days and it feels much better without all the different infos.
I get the antibiotics, today was a relatively good day, I have a little hope so.

yes, I was seeing a specialist, she was the one who diagnosed it after no other doctor was able to in 2 years.
I have another appointment tomorrow in a big hospital in the infectious department, so will see what they say and do.

Holy Diver

tara73 wrote: »

you are very right, I stopped googling it which I did a lot in the first days and it feels much better without all the different infos.
I get the antibiotics, today was a relatively good day, I have a little hope so.

yes, I was seeing a specialist, she was the one who diagnosed it after no other doctor was able to in 2 years.
I have another appointment tomorrow in a big hospital in the infectious department, so will see what they say and do.

Best of luck. It will be interesting to know if ID consultant is as helpful for you as the specialist.

njs030

tara73 wrote: »

you are very right, I stopped googling it which I did a lot in the first days and it feels much better without all the different infos.
I get the antibiotics, today was a relatively good day, I have a little hope so.

yes, I was seeing a specialist, she was the one who diagnosed it after no other doctor was able to in 2 years.
I have another appointment tomorrow in a big hospital in the infectious department, so will see what they say and do.

Oh good, there's a combination of antibiotics usually over a period of about 6 months that should kill the disease. Some are very strong so do make sure to protect your stomach - acidophilosis (not sure how to spell it) is very good for that. You'll find it in a health shop.
Best of luck.

tara73

was at the hospital-appointment today. was kind of as expected, they are not interested in the dark-field microscopy pictures, they didn't had a look at tit, they just go with examining the blood on antibodies...so they took blood and I hear back in a week.
I'm not sure what they will do differently than the rheumathologist who already found no antibodies in my blood for lyme disease.

Holy Diver

tara73 wrote: »

was at the hospital-appointment today. was kind of as expected, they are not interested in the dark-field microscopy pictures, they didn't had a look at tit, they just go with examining the blood on antibodies...so they took blood and I hear back in a week.
I'm not sure what they will do differently than the rheumathologist who already found no antibodies in my blood for lyme disease.

No surprises there so! See what they say on follow-up visit I suppose. I would not put many eggs in that basket though...

Fortunately for you there are some pretty good specialist clinics in Germany. Treatment is costly though if that is the route you end up taking.

tara73

Holy Diver wrote: »

Fortunately for you there are some pretty good specialist clinics in Germany. Treatment is costly though if that is the route you end up taking.

do you know some clinics here? can you recommend one?

Holy Diver

tara73 wrote: »

do you know some clinics here? can you recommend one?

I can pm you some info if you wish

tara73

yes, that would be great.thanks

Gremlinertia

Gentle reminder, suggesting or asking for PM contact is against the LTI charter, you'll find the charter at the top of the front page of LTI

tara73

sorry

DipStick McSwindler

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OUTDOORLASS

Verygood interview Ray Darcy.s Radio1 programe today after Joe Duffy....I came in on it whilst driving. Lady who got bit
by insects.....it took a year to diagnose. Well Worth looking it up on RTE1 Podcast....
Rgds,

OUTDOORLASS

Hi Tara I heard a very good interview today on Ray Darcy.s radio program on RTE1, just after the Joe Duffy Show.
About a lady who got bitten by some insects, and who took a year to get diagnosed. Well worth checking the
PodCast for it.....
Hope you are doing Ok..
Rds,

DipStick McSwindler

This post has been deleted.