need an advice

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fromFrance
New Member


Date Joined May 2009
Total Posts : 3
   Posted 5/18/2009 1:48 AM (GMT -6)   
Hi,
I'm asking a question here since everything is so confusing about the lyme disease...
I'm a French mum and my little girl (5year old now) has been bitten by an infected tick for years ago. She's had a 14-day amoxicilline treatment and the doctor told me she was cured. I asked for a "follow up" of this infection (blood tests erevy now and then ?... )but the doctor "refused" and told me to forget it which I tried to do.
A few weeks ago she slightly complained about her knees and had a weird spot(like a target) during one morning so I decided to check, on my own, if there was any link with the tick bite. The western blot came back positive (igmpositive 41 and 8, Igg positive 41 and 5) but still the doctors (even specialists in infectious disease) tell me the bacteria is no longer there (??) and I won't find any doctor to give her any treatment because she doesn't have real symptoms ...
My question is : how long does the treatment last when you have symptoms ? does a LLD only rely on symptoms or does the treatment go on if the serology is still positive ?
Is there any kind of "follow up" when you have been treated ?
I can't help feeling worried, thinking there might be something to be done for her today because the disease might reappear later and be more difficult to treat... How can I find a LLD in Europe ?
I hope you'll give me some answers and advice,
Sophie

Razzle
Veteran Member


Date Joined Aug 2007
Total Posts : 4396
   Posted 5/18/2009 4:19 AM (GMT -6)   
Hi Sophie,

You might want to contact the International Lyme and Associated Diseases Society for recommended LLMD referrals - http://www.ilads.org/

Another suggestion is homeopathic treatment. If you know of a physician who uses homeopathic medicine, I think it would be worth a try. Children usually respond very well to homeopathic treatment, and it can be used in conjunction with other treatments (including medications) for Lyme.

I hope this helps - take care,
-Razzle
Chronic Lyme Disease, Gluten & Sulfite Sensitivity, Many Food/Inhalant/Medication/Chemical Allergies & Intolerances, Asthma, Gut issues (dysmotility, non-specific inflammation), UCTD ("Secondary Lupus-Like Syndrome"), Osteoporosis, Pancytopenia, chronic malabsorption/malnutrition, etc.; G-Tube; Currently TPN-dependent.
Meds:  Zofran, Pulmicort, Heparin (to flush PICC line), Claritin, Colloidal Silver (used topically), IV Milk Thistle, probiotics.


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 5/18/2009 11:27 PM (GMT -6)   
Email stephanie@turnthecorner.org give them the area you need a lyme litterate doctor. she will email you back! The infectious disease society doesnt believe in chronic lyme they are a bunch of possessed devil ******s. dont let them keep your child sick. amoxy is not enough. especially only 14 days. also get her tested for coinfections most lyme cases come with coinfections and with the western blot proof of infection i would venture to say you could have a malpractice suit in your hands. Forgive my passion but when the children are involved i become very angry. Ozone therapy looks promising.. Dont be soft fight for that baby
In the begining there was no Lyme. And the line is faded not showing where it came in. I became a new Mother and my Lyme decided to show itself. They said my blood tests were normal nothing was wrong. My swollen elephant like knee and finger and the unbelieveable back pain was just low vitamin D. I had a butterfly rash years before. When I told the rheumatologist I had the butterfly rash he said a key sentence. A butterfly rash is only present in lupus or Lyme disease. Well lupus pain is not in the back. i finally realized all the warning signs I had before. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. Now I pressed on. To a Lyme doc, after a nice run around and a lot of there is nothing wrong with you and a recomendation to counceling, He said Veronica this is Lyme and I am going to treat you. Now he knows and I know, Lets get it on paper. Getting the Flow Cytometry test. What kept me pressing on in the face of such amazing and eye opening adversidy is the baby! I had Lyme while I was pregnant Luckily I know I was not infected while pregnant. She is 19 months now and healthy. I am watching her with an eagle eye. God Bless everyone. Love Veronica.
P.S We are the ones who know about Lyme not the doctors. Isnt that just mad. Backwards . Alice in wonderland.

Post Edited (veromia333) : 5/18/2009 11:54:02 PM (GMT-6)


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 5/18/2009 11:35 PM (GMT -6)   
Oh man europe I dont know what to say but that she still has it and if her knees hurt it is prob now chronic and also a new bullseye may be a sign of reinfection or of a herx reaction . still do the email they may be able to help
In the begining there was no Lyme. And the line is faded not showing where it came in. I became a new Mother and my Lyme decided to show itself. They said my blood tests were normal nothing was wrong. My swollen elephant like knee and finger and the unbelieveable back pain was just low vitamin D. I had a butterfly rash years before. When I told the rheumatologist I had the butterfly rash he said a key sentence. A butterfly rash is only present in lupus or Lyme disease. Well lupus pain is not in the back. i finally realized all the warning signs I had before. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. Now I pressed on. To a Lyme doc, after a nice run around and a lot of there is nothing wrong with you and a recomendation to counceling, He said Veronica this is Lyme and I am going to treat you. Now he knows and I know, Lets get it on paper. Getting the Flow Cytometry test. What kept me pressing on in the face of such amazing and eye opening adversidy is the baby! I had Lyme while I was pregnant Luckily I know I was not infected while pregnant. She is 19 months now and healthy. I am watching her with an eagle eye. God Bless everyone. Love Veronica.
P.S We are the ones who know about Lyme not the doctors. Isnt that just mad. Backwards . Alice in wonderland.


veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 5/19/2009 12:02 AM (GMT -6)   
I believe igm positive is a new infection and igg is an old infection. positive in both this may signify a second reinfection. after about four weeks after intial infection you are dealing with a disseminated 2nd stage them moves into systemic 3rd stage. please read the newbies thread at the top of the forum topics you will be your daughters advocate in a controversial disease. that is real
In the begining there was no Lyme. And the line is faded not showing where it came in. I became a new Mother and my Lyme decided to show itself. They said my blood tests were normal nothing was wrong. My swollen elephant like knee and finger and the unbelieveable back pain was just low vitamin D. I had a butterfly rash years before. When I told the rheumatologist I had the butterfly rash he said a key sentence. A butterfly rash is only present in lupus or Lyme disease. Well lupus pain is not in the back. i finally realized all the warning signs I had before. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. Now I pressed on. To a Lyme doc, after a nice run around and a lot of there is nothing wrong with you and a recomendation to counceling, He said Veronica this is Lyme and I am going to treat you. Now he knows and I know, Lets get it on paper. Getting the Flow Cytometry test. What kept me pressing on in the face of such amazing and eye opening adversidy is the baby! I had Lyme while I was pregnant Luckily I know I was not infected while pregnant. She is 19 months now and healthy. I am watching her with an eagle eye. God Bless everyone. Love Veronica.
P.S We are the ones who know about Lyme not the doctors. Isnt that just mad. Backwards . Alice in wonderland.


fromFrance
New Member


Date Joined May 2009
Total Posts : 3
   Posted 5/19/2009 5:42 AM (GMT -6)   
thank you for your answers, I go on searching because I am so worried for my little girl.
Sophie

veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 5/19/2009 10:39 AM (GMT -6)   
stay positive but firm and find a lyme doc
In the begining there was no Lyme. And the line is faded not showing where it came in. I became a new Mother and my Lyme decided to show itself. They said my blood tests were normal nothing was wrong. My swollen elephant like knee and finger and the unbelieveable back pain was just low vitamin D. I had a butterfly rash years before. When I told the rheumatologist I had the butterfly rash he said a key sentence. A butterfly rash is only present in lupus or Lyme disease. Well lupus pain is not in the back. i finally realized all the warning signs I had before. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. Now I pressed on. To a Lyme doc, after a nice run around and a lot of there is nothing wrong with you and a recomendation to counceling, He said Veronica this is Lyme and I am going to treat you. Now he knows and I know, Lets get it on paper. Getting the Flow Cytometry test. What kept me pressing on in the face of such amazing and eye opening adversidy is the baby! I had Lyme while I was pregnant Luckily I know I was not infected while pregnant. She is 19 months now and healthy. I am watching her with an eagle eye. God Bless everyone. Love Veronica.
P.S We are the ones who know about Lyme not the doctors. Isnt that just mad. Backwards . Alice in wonderland.


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 5/19/2009 3:39 PM (GMT -6)   

Hi Sophie.  It sounds like your daughter may not have been treated long enough initially.   As her mum, you know her best. 

Try going to the EuroLyme Disease Support Group at http://health.groups.yahoo.com/group/EuroLyme/  They may be able to recommend a doctor for her.

If you would like the name and phone number of an excellent Lyme pediatrician in the United States or if you would like a list of resrouces on Lyme, you can email me at ko_@bellsouth.net

I hope your daughter can see a knowledgeable doctor soon.  Please let us know how she is doing, okay?


dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 5/19/2009 4:17 PM (GMT -6)   
Hi fromFrance !
I am so sorry to hear about your daughter having lyme; I like Razzles idea with the homeopathic meds for kids - have also heard about beeing successful and safe for kids; you have already gotten a lot of links for finding a LLMD in Europe/ France. I do not know where in France you stay but another maybe helpful adress is the German Borreliose Bund at info@borreliose-bund.de - they have some adresses of docs in other Eu countries and understand English very well. I stay in Germany.
Hope you find answers soon! Take care and my very best wishes for your little one!!! greetings form dorit

fromFrance
New Member


Date Joined May 2009
Total Posts : 3
   Posted 5/27/2009 2:20 PM (GMT -6)   
Hi and thank you so much for your answers,
I have started a treatment with essential oils on Tess with a specialist, hoping so much it will work. I don't know if this is the case in the US but in Europe, essential oils are used a lot especially when "traditional doctors" do not provide any answer...
Still I try to reach a LLMD (seems I need to go to Germany ... difficult to organize), a pediatrician would be better...
Tess feels fine, this is great, I would like to make sure she'll be fine in the future too...
thanx again !
Sophie
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