Hello everyone

[Slovenia]

Hi everyone
I'm a Brit living in Slovenia - a small country wedged between Italy, Austria, Hungary and Croatia.
I too have Morgellons. Not that any doc will admit it. Since first noticing black specks and being itchy in January I have progressed to Chronic Lyme disease as well - not that any Slovenian doc (or indeed a great many throughout the world it seems) will admit to that either!
Since Jan/Feb I've done a lot of reading on the internet about Morgellons because that's the only place you'll get any sensible answers.
Even though I'm very new here and still not got to grips with what's hit me let me say to anyone else new: we have to fight this and we have to fight the medics too who think we are delusional. As a journalist I'd say the people who really are suffering from delusions are the doctors themselves who go on denying this disease exists even when presented with evidence right infront of their noses. In effect they are nothing short of amateur quack psychologists. In desperation I even went to my former country, the Netherlands, thinking I'd get a better response. Wrong. One told me quite openly in reception - and shouted from one end of the room to the other so everyone could hear - "why don't you get back to your own country" AND "if you feel so ill why don't you kill yourself? Yes go and kill yourself." Clearly men in white coats should have been coming for her and taking her away! I believe the protocol is not to name such individuals on this website but you are welcome to email me for this incriminating information! I will be delighted to give it.

Now I said the internet is the only place for sensible answers. From what I am finding it is also a place for some very crazy ideas - ideas that give further ammunition to the doctors who brand us delusional. I have read all kinds of stuff and even had phone conversations with those who believe it is all part of a government plot and military science. I will not comment. We believe what we want to believe. Only beware of pseudo remedies. Occasionally I hear of people who have been "cured". Strangely, the trail goes cold after that. They never return to describe the details of the wonder cure. I have the impression all we can really hope for at the moment is some relief of the symptoms and holding off of further deterioration. In this respect there are several good ideas listed elsewhere on this site (as well as a tiny number of ones to think twice about - but that's the price of democracy).

Going back to Lyme, as you read more you will find that a great many Morgellons sufferers have Lyme too. And there lies another problem. Most tests for Lyme prove negative so again, quite a few patients are sent away with a wrong diagnosis. Even the head of Slovenia's main infectious diseases hospital thinks I don't have Lyme - while more sophisticated tests conducted in Germany prove that I do. So you see, many of us have a double fight on our hands - that Morgellons is a real disease AND that we have Lyme disease.

As for my Lyme, you would think that collapsing several times in the street - twice outside different hospitals, severe heart palpitations and nearly all the other symptoms of Lyme would suggest to medics that I had something seriously wrong wouldn't you? That I wasn't imagining things. No. Despite all this my first diagnosis was of pruritis - itchy skin.

So there you are, a rather long introduction. If you are coming to this as I did not so long ago and in a state of shock, welcome. I have had many a panic attack and desperately phoned friends - once internationally in the middle of the night - so know what it is like. Hold in there.

I began self-treating with Doxycycline antibiotic which worked for a while against the Lyme but my condition is deteriorating again. Next week I go to a clinic in Germany to get sorted out. This though is for the Lyme and not necessarily Morgellons. I will post my progression if anyone is interested.

I'm taking a bit of a risk but if anyone finds themselves in the same kind of position you can email me - replace AT and DOT obviously: barrie AT redfern DOT tv

[Katinka]

Hi Slovenia...another European here! Glad you found this site...but sorry to hear you need to deal with this...

You mentioned you will go see a Lyme Hospital in Germany? Which one?
Maybe I can help you with this if it's the same were I have been.

Great doc's btw...they are not only treating for Lyme's and other co-infections but are also highly motivated in treating Morgellons Disease like in my case.

Katinka

[Slovenia]

I am being treated at the clinic in Augsburg near Munich.

I was already self-treating with Doxy orally at 200mg p day and they thought it might be worth continuing at a higher dose, first of all 300 mg. The plan was to continue treatment at home but with weekly blood checkups locally for drug levels (to protect liver and kidneys) and then go up to 400 to be sure of crossing the brain membrane (the problem with oral doses). However the local doc screwed things up by saying she wanted to end the antibiotic as it had gone on too long and wanted further tests before she did anything. She sent me to another hospital an hour's drive away - only for me to discover it was for a brain scan to see if there was a tumour. Well there wasn't a tumour but now that hospital wants to do more tests including one to test brain reaction time (!!!). In Slovenia you get lots of tests but no treatment.

So, as you might have guessed I am back in Augsburg on Tuesday, this time for continuing treatment from them. Apparently one of the senior partners has some experience in treating Morgellons though I don't know any more on this. One thing's for sure in my limited dealing with them: they listen and they understand.

Barrie

[Katinka]

Yep! that's the one!

Katinka

[-----------]

Hi Slovenia, welcome!

Feel free to ask questions, if you need help... there's always someone willing to help.

[Slovenia]

Thanks Kammy!

Barrie

[Jo]

Hello Barrie!

Welcome to MDR. You're journalistic skills will be beneficial to further the cause for sure

Wishing you and all of us healing and health.

Jo xxx

[Robin]

Hello Barrie!
Glad you found us!
Robin

[sarothra]

Hi Slovenia,

I am getting over a bad cold but have not forgotten your question about why I feel Lyme and Morgellons are related.

I hope to be able to answer today or tomorrow.

Hang in there.

Hope you're doing well, or better.

sar