hello to everybody from dorit

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dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 11/13/2008 9:10 AM (GMT -6)   
hello to everybody
 
   I am new here and I stay in europe, with lyme....
  
 I have read a lot about lyme during the last months, when I tried to get as many information as possible about this disease; it has been found after I had a heavy allergic attack this spring; the doc I went to said that there may also be something which is called ACA (very thin looking skin); the tests (elisa and westernblot) were positive with the IgG.
 
I am happy to have the possibility to read here and get information from your postings;

maybe slowly I will also have the courage to ask questions..... after having inproved my English.. reading ist much easier..

   greetings to everybody

 from dorit

 


Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4395
   Posted 11/13/2008 9:31 AM (GMT -6)   
Welcome to the forum, dorit. Sorry you have Lyme, but glad you found us. Check out the thread titled "The Basics - Newbies, check this out!" at the top of the forum, if you haven't already -- it has a lot of good basic info about Lyme and coinfections.

Take care,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Anemia, Lymphopenia, intermittant Pancytopenia, chronic malabsorption/malnutrition, etc.; G-J Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Vitamin B12 Shots, Heparin (to flush PICC line).


goodoldtimes
Regular Member


Date Joined Mar 2008
Total Posts : 96
   Posted 11/14/2008 6:56 AM (GMT -6)   

hi Dorit,

 

you're from Europe. Which country? I'm from The Netherlands and I live in the USA.

Just curious tongue


dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 11/14/2008 10:08 AM (GMT -6)   
hi goodoldtimes!

I live in germany! but I am a german - italian -american "mixture",.....currently allone for the next 2 months, my husband left for a trip to cape hoorn last night, doing the filming of the trip and the crew`s actions down there;

so I will have time to read and lern more about lyme, hopefully I will lern where I stand with my symptoms and what I should do next and / or should not do at all.

greetings!

dorit

goodoldtimes
Regular Member


Date Joined Mar 2008
Total Posts : 96
   Posted 11/14/2008 10:32 AM (GMT -6)   

hi Dorit,

are you on antibiotics now? You probably can get good treatment in Germany. I wish I were in The Netherlands right now...

Ich spreche ein klein bischen Deutsch tongue tongue

When did you get Lyme?


EM rash oct. 24 2007, 10-30-08: doxy 100 mg. bid for three weeks. Felt better, but symptoms slowly got back and much worse
2-21-08 until 4-23-08: doxy 100 mg. bid (described by family doctor)
4-24-08: start doxy 200 mg. bid and Biaxin XL 1000 mg once a day (seeing an Infectious Disease Doctor)
8-8-08 until 8-21-08: adding Flagyl 500 mg. bid
8-21-08: off all ABX   
9-17-08: doing herbs but symptoms slowly reappeared,so started Biaxin 500 mg. bid on 9-17-08
11-12-08: off abx, start Diflucan
 


dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 11/14/2008 3:20 PM (GMT -6)   
hi goodoldtimes,

no, I am not on ab right now;

this is my story so far:

I had a really heavy allergy this spring after working in our garden; pimples everywhere, it was hard to breath, headache, I felt sick; I have hey -fever since I can remember, but I never had experienced it in such a way. It got worse and a week later I saw a doctor; he gave me cortison (shot and cream for my skin) and I was "handed over" to a dermatologist; I have neurodermatitis since years, or the doctors held it for neurodermatitis; the dermatologist examined those locations which had healed over the time and she told me, that it could be Akrodermatitis chronica atrophicans ....last / 3rd stade of lyme borrelosis; she asked me if I could remember a tick bite, yes I could, years ago; they sent me to the bood test, Elisa IgG was positiv and Westernblood IgG was also positiv;
the doctor who gave the interpretation of this test said, that an infection took place, but threatment with antibiotica seemed to have been successful;

........... I and nobody else had ever thought about lyme before...........so I do not know when exactly all this had its silent beginning...

Actually I had several tick bites, the last one (I remember) in spring 2000; I never noticed an em; maybe because I have this hey - fever and I also had a lot of allergies and my skin was always somehow difficult to handle I did not take enough care; I traveled a lot in my life, I have got many vaccinations and I am definitely allergic against penicilin V and G;

a month or so after this tick bit in 2000, I got a could which wasn`t a cold at all in my eyes;
I felt so strange....I missed the door when I wanted to walk through it, for example; everything hurted, especially my knees, there was a thunderstorm in my head, lightnings, I had problems with my eyes, I was swetting during the night, I feld so cold during the day; my doctor was on vacation and her representative said to me something like: we normally do not heal colds with antibiotica! Go home, have a rest; relax, maybe you are overstressed, may be your menopause is starting, (I was 36 years old) and so on; I of course did not mention the tick bit, because I did not remember it and there was nothing which looked like an em.
I went home and I started to take Doxycilin (hyclat), which was always here because we were traveling a lot. I took 400mg / day for nearly 5 weeks - nearly all the pills we had here, untill I had the feeling, I won this mystic fight; I told myself: if this is the end of all my normal days I at least tried everything I can;
maybe this was the best thing I could ever do for me !!! That is what I think in the meanwhile.
Normally I never just or easily take medicine, all the "chemical stuff" - we call it here; I am very much in herbs, I eat organic grown food, try to live in a healthy way.

Since that time I noticed several things which I didn`t know from the time before, like problems with my knee or shoulder, times, when I feel really tired, or "somehow weak", I sometimes have problems to concentrate, and my menopause really seems to have started in 2000... all of this was never really drastic, but it was strange enough that I arranged two general blood controls since 2000 checking organs, rheumatism and so on; the docters always said: well, we are all getting older.
Honestly spoken, I always had the feeling that there was something else (living inside me and fooling around with me), but my body was able to keep it under control;

so - that is the story till today....... the docters involved now said, no ab at the moment and hopefully we don`t need them in the futere.... but they don`t know what to say to a revaccination against yellow fever which I need to have for a job in africa next year, in case I really want to go.



Oh, Goodness! - this got long now!!! hopefully I did not write too many mistakes and nonsense here .... anyway who ever made similar experiences please let me know!! I am happy for information and there are still a lot of questions I do have.

and for you, goodoldtimes, I wish you to get the best possible treatment even if you are in the states right now!!! Why is this so difficult for those who need medicin !?!?
toll, dass du deutsch kannst, vielleicht kann ich dich fragen, wenn ich mit meinem Englisch am Ende bin !!
ja, es ist einfacher in Deutschland, but the lyme -community here often seems to lose hope in a life without ab, that makes me so sad...!

greetings
dorit

goodoldtimes
Regular Member


Date Joined Mar 2008
Total Posts : 96
   Posted 11/14/2008 3:56 PM (GMT -6)   

hi Dorit,

so your tests were positive and the doctor said that the abx treatment was succesful???

Do you have copies of the tests? If the doc diagnosed you with Lyme, why didn.'t he describe abx? Try to find a Lyme literate doctor.

I denke dass deine English gut ist! Take care!


EM rash oct. 24 2007, 10-30-08: doxy 100 mg. bid for three weeks. Felt better, but symptoms slowly got back and much worse
2-21-08 until 4-23-08: doxy 100 mg. bid (described by family doctor)
4-24-08: start doxy 200 mg. bid and Biaxin XL 1000 mg once a day (seeing an Infectious Disease Doctor)
8-8-08 until 8-21-08: adding Flagyl 500 mg. bid
8-21-08: off all ABX   
9-17-08: doing herbs but symptoms slowly reappeared,so started Biaxin 500 mg. bid on 9-17-08
11-12-08: off abx, start Diflucan
 


dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 11/14/2008 7:15 PM (GMT -6)   
hi goodoldtimes!

so you would say if the doxy I took had been enough I could not have developed the Akrodermatitis chronica atrophicans??

Yes, I have copies of the tests and the doc who sent me to testing does not know anything about Lyme... but he is willing to learn and cooperate.
I will see the lyme doc in January - no possibility to get an earlier date (as long as I am still alive) ...which seems to be "normal" here...
my doc would probably give me abx if I think I should do that; the dermatologist said, it often happens that one gets the aca but the borrelia b. is not active any more...

I have the feeling, they all say different things; the question remains what to do now;

what would you do? do you also have an Akrodermatitis ???

take care too!

dorit

goodoldtimes
Regular Member


Date Joined Mar 2008
Total Posts : 96
   Posted 11/15/2008 7:17 AM (GMT -6)   

hi,

from what I understand is that the Akrodermatitis is due to the effect of a continuing active infection with borrelia. But maybe I'm wrong and I don't understand it. I'm not a doc..and I don't have Akrodermatitis.

It's good you have the copies of the test so you can take them with you to the lyme doc. I would listen to your doctors and then rely on your lyme doc. In what shape are you now? Hope you're not too bad, while you have to wait until january.

Trust your common sense as well. I had a family doc who didn't know about Lyme and when I realized that I started looking for another doc.

Hang in there!


EM rash oct. 24 2007, 10-30-08: doxy 100 mg. bid for three weeks. Felt better, but symptoms slowly got back and much worse
2-21-08 until 4-23-08: doxy 100 mg. bid (described by family doctor)
4-24-08: start doxy 200 mg. bid and Biaxin XL 1000 mg once a day (seeing an Infectious Disease Doctor)
8-8-08 until 8-21-08: adding Flagyl 500 mg. bid
8-21-08: off all ABX   
9-17-08: doing herbs but symptoms slowly reappeared,so started Biaxin 500 mg. bid on 9-17-08
11-12-08: off abx, start Diflucan
 


dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 11/15/2008 4:30 PM (GMT -6)   
hi goodoldtimes,

yes, I think I understand the Akrodermatitis the same way you explained it.

I learn a lot reading here; and I would like to get more information from others who may have Akro, I think I should ask this directly here;

well, I don`t feel too bad right now; what about you, are you ok, without ab? did you have any co- infections?


take care! liebe grüße!
dorit

goodoldtimes
Regular Member


Date Joined Mar 2008
Total Posts : 96
   Posted 11/15/2008 4:49 PM (GMT -6)   

hi Dorit,

I've never been tested for co-infections, so I hope not...

I might have a yeast-infection now, that's why I have to take the diflucan.

I'm glad you're no feeling too bad, me either.
 
Auf wiedersehen tongue
Annemarie
EM rash oct. 24 2007, 10-30-08: doxy 100 mg. bid for three weeks. Felt better, but symptoms slowly got back and much worse
2-21-08 until 4-23-08: doxy 100 mg. bid (described by family doctor)
4-24-08: start doxy 200 mg. bid and Biaxin XL 1000 mg once a day (seeing an Infectious Disease Doctor)
8-8-08 until 8-21-08: adding Flagyl 500 mg. bid
8-21-08: off all ABX   
9-17-08: doing herbs but symptoms slowly reappeared,so started Biaxin 500 mg. bid on 9-17-08
11-12-08: off abx, start Diflucan
 

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