Help finding an LLMD for my son and I

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ErinT'Mom'
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/16/2009 3:12 PM (GMT -7)   
Hi Everyone, 
I noticed all your notes on the healing well board and wondered if you can help me. I just moved to Arizona after being overseas for 15 yrs. (My husband is in the military. I was bit in Germany in May 2004 and it took about 8 mths to diagnose which they did end up doing in the German hospital. I had a week of doxycycline in November of 2004 and when I got pregnant the Lyme's kicked up again and I had 4 wks of Ceftriaxon in 2006. I need to find an LLMD that can help me. Do you think there is any hope to get well? My neurologist just thinks I have anxiety and is skeptical of non-MDs. I have been having seizure type episodes, tingling, nausea, pain, severe fatigue etc.  Do you know of anyone I could get in touch with that might help my son and I. I have an 8 yr old and I think my 22 mth old actually has Lymes but they won't test him because they say its not necessary. I am not sure I believe his pediatrician. They are nice but don't know anything about it Lyme and I think how would he explain how he is feeling because he can't speak yet. I just know he is not feeling well and has headaches, is tired, is off balance,not walking, struggles with sleeping and he appears to have cerebral palsy the way he holds his hands and legs. We just went to the orthopedist today to get braces for his feet to see if that helps him. Its really hard to trust doctors now after all I have gone through. Before I got pregnant the doctors told me that I could not transfer Lyme to the baby. Now I am not sure of that. Anyway, if you have any info I would love to find someone to help us.
Thanks,
Erin smilewinkgrin

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 2/16/2009 10:36 PM (GMT -7)   
Hi Erin, I'm so sorry for what you're going through. I would suggest sending an e-mail to stephanie@turnthecorner.org requesting a list of doctors in your area. We are not supposed to list names of doctors on this forum but if you send an e-mail to the address I listed you probably will receive a response by tomorrow. This is how I found the doctor I go to in NY. Good luck. Valerie

ErinT'Mom'
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/17/2009 11:30 AM (GMT -7)   

Hi Valerie, Keephope and our sweet group,  Thank you for your support and thank you so much for the information. I will email that site immediately. Have you been successful with your treatment?  I love to hear what has worked for people. I start to become nervous about what certain drugs can do safely. I went to a support group and watched a movie called Under Your Skin, very good but emotional. I cried like a baby when I saw it especially because of the things my son is going through, it looked too familiar and opened my eyes up to the greater possibility that this is what could be going on with him. Someone at the group talked about an alkaline diet that he had found worked well. Has anyone ever heard of that? Well have a blessed day and thanks for listening, Erin smilewinkgrin


scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 2/17/2009 1:19 PM (GMT -7)   
Hi Erin, I'm sorry I can't give you more information. After many years of being very sick, I was just diagnosed and beginning treatment. It's very scary and overwhelming but I feel very fortunate to have found this group and a doctor I have faith in. The members are very knowledgeable and extremely helpful and supportive. From what little I know and/or remember, there are quite a few members who also have children who are being treated and I'm sure they will respond. Getting an appointment with a good doctor is the most important thing you can do right now. Good luck. Valerie

ErinT'Mom'
New Member


Date Joined Feb 2009
Total Posts : 4
   Posted 2/17/2009 1:59 PM (GMT -7)   
Valerie, Please let me know how you are doing and email me personally anytime if you need to chat and need some encouragement or support. I'm here. Have a great day and I'll talk to you soon. God bless you, Erin :-)

judy3
Veteran Member


Date Joined Nov 2006
Total Posts : 667
   Posted 2/17/2009 3:58 PM (GMT -7)   
Lots of us have been on mega doses of antibiotics with mild side effects, I myself have been on Rocephin, Minocycline and Zithromax all at the same time for approx 3 months, than many months on Zithro and mino, its a small price to pay to get better, I was at  a point I had a very hard time recongnizing people, getting my kids out to their school bus even if I had them dressed and ready, my kids needed to remind me to get out of the shower, due to short term memory issues and doing great now

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 2/26/2009 8:53 PM (GMT -7)   
You are near the clinic that jsut cured me. It is called Envita and it is in Scottdale.
Take care of your son first. And talk to Dr. Korn about getting pregnant before you do.
Best,
Marie
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 2/26/2009 8:55 PM (GMT -7)   
Erin...
You can write to me directly just tap on the envelope on the far left side...happy to talk to you and answer any questions.
Poor girl..you have your hands full. There is a great Dr. out near you.
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."


sojourner
Veteran Member


Date Joined Apr 2006
Total Posts : 1173
   Posted 2/26/2009 10:02 PM (GMT -7)   
I am sorry that your family has been impacted by this disease, esp. knowing you were stationed overseas to support the defense of our country.

It the bite or infection is true to the European strain, this should be noted when you contact the doctor that is being considered and seek assurance that they are able to treat appropriately.

http://jcm.asm.org/cgi/reprint/37/9/3010.pdf

I understand that some European strains respond differently to treatments traditional to those of the U.S. There are three significant studies that I have read. I was able to find one of them in my big ole' archive. It references at least one other.

http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=153919

In the case of two families that we have received calls from who lived in and were bitten in Europe, then treated or re-treated in the states, there was validation of the Doxy findings in the study above. It did not work and it took some time for the doctors to research and find the right abx approach.

I believe this may apply to testing as well; which can be subjective given the accuracy and specificity needs in our testing in the states. So..additional testing info at this link may or may not be beneficial:
http://www.springerlink.com/content/qgkdb7km7yyfw4xv/

The treating physician is key. Your children need to be with a qualified pediatric trained LLMD.
Blessings, Sojourner

scorpio1960
Veteran Member


Date Joined Jan 2009
Total Posts : 914
   Posted 2/26/2009 10:49 PM (GMT -7)   
Erin, Thank you so much. Have you found a doctor for your son yet?

Judy, I'm glad you are feeling so much better. I have the same issues and my doctor is prescribing the same meds. With any luck, it will work as well for me. How long were you sick before being diagnosed and treated?

dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 3/2/2009 5:57 PM (GMT -7)   
Erin,

in case you need additional information from here / Germany, i.e. about the reliability of your lab test results you can email the "Borreliose und FSME Bund" to this adress: info@borreliose-bund.de; they understand English very well;
If I can be of any additional help, let me know; I stay in Germany/ Berlin

Wish you all the best! dorit

Post Edited (dorit) : 3/2/2009 6:00:09 PM (GMT-7)

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