Just wanted to say hi and introduce myself..

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Amy C
Regular Member


Date Joined Jan 2009
Total Posts : 45
   Posted 7/22/2009 11:46 PM (GMT -6)   
Hello, Sorry I just kind of jump on here from time to time and post. I guess I should introduce myself. LOL
 
My name is Amy and I live near Youngstown, Ohio. Our entire family has Lyme. My mom, brother, his fiance, myself, my 2 boys, maybe my daughter and my husband.
 
I tested CDC positive for Lyme in October of last year. We think I am congenital. Have had some chronic health issues since I was a child. My mom has been sick and misdiagnosed since she was a child.
 
After I had my last son c section in 99 then my grandma died. It was a very tramatic time for me. This is when things strarted to really go down hill for me. My anxiety & depression got worse. Started getting stomach & bladder problems. Although I did have frequent bladder infections and constipation as a child. Anyways, then I started getting memory problems. Then fatigue, neuro symptoms and arthritis. All over about a 9 year time frame.
 
My mom had the same pattern to her illness, which at the time she thought was Fibromyalgia. She also had several other health problems on top of that. All probably from Lyme but we didn't know that.
 
After many doctors, thinking I was crazy and many years of researching on my own I thought it might be Lyme. I went to an LLMD and got tested. Then talked my mom into a test. Not only does she have Lyme but almost all of the co-infections too! She is very sick!! Had I not figured this out she may have died!
 
So my kids have had many health issues over the years. I started to think maybe they had congenital Lyme too. So we had them tested. My youngest son also has Aspergers (a form of autism).
 
We are all in treatment now. I just recently took myself and my 2 boys all the way up to WI to see a new LLMD. The one we had wasn't trying new things and I felt like I was going nowhere.
 
I was taking 600 mg of Doxy and 1500 mg of Biaxin but now I am pulsing 1000 mg of Biaxin with 300 mg of Clindamycin HCL.
 
That is my very brief story. LOL As we all know our real stories are very long!! Glad to meet everyone!! Amy
--------------------
One BIG Lyme family!! Possibly congential...
~I tested CDC positive 10/08
~My mom Igenex positive 11/08
~My brother Igenex positive 4/09
~My 2 boys some positive & IND bands, clinical diagnosis 3/09
~My youngest has Aspergers too (a form of autism)


CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 7/23/2009 1:07 AM (GMT -6)   
Amy,

Hi hun:) Welcome to the forum!

Wow, I'm so sorry your entire family is sick. That has to be hard to deal with. I'm so glad you found out in time for your mom! I bet she is thankful for that.

I'm sure you already know the inn's and out's of this forum but if you have any questions, don't hesitate to ask them. We have very supportive people on this board and we also have mothers here with family members that are infected too.

So, enjoy your time here:)
**You never know how STRONG you are....until being STRONG is the ONLY choice you have**

Co-Moderator Lyme Disease Forum


Harleyrider
Regular Member


Date Joined Sep 2008
Total Posts : 283
   Posted 7/23/2009 8:35 AM (GMT -6)   
Welcome Amy C, glad you found this forum and
hope it will be a big help to you and your family.
 


tickedoff
Regular Member


Date Joined Jun 2009
Total Posts : 56
   Posted 7/23/2009 9:20 AM (GMT -6)   
Welcome Amy,

so sorry to hear that you are all lyme infected...i will pray for all of you...it also makes me really mad that this disease is still so controversial and that the majority of the medical community is still so lyme illiterate!!!! i want to scream....my husband has lyme (diagnosed 5/09... late stage disseminated lyme...suspect he's had it for more thatn 10 years) and one thing i learned is that you have to be proactive in your own treatment...do your homework and fight with everything you've got...you will get a lot of support and good information from this site...will continue to follow your posts...there is strength in numbers... Carol

stkitt
Forum Moderator


Date Joined Apr 2007
Total Posts : 32602
   Posted 7/23/2009 10:44 AM (GMT -6)   
Hello and Welcome to HealingWell and the Lyme Forum. I am sure you are going to find the members of this forum supportive and caring and I hope you take a look around at all the forums here in HealingWell.
 
We love new members and I am so glad you found us.
 

With kindest personal regards,
Kitt



 

Kitt,
Moderator: Osteoarthritis, GERD/Heartburn
Anxiety/Panic, & Depression
*~*
http://www.healingwell.com/donate *~*
"When you find peace within yourself, you become the kind of person who can live at peace with others."
Not a mental health professional of any kind


tickedoff
Regular Member


Date Joined Jun 2009
Total Posts : 56
   Posted 7/23/2009 1:41 PM (GMT -6)   
Amy, he has extreme fatigue, unexplained inflammation of knees, ankles, finger (for which he had surgery in 2/08 not knowing he had lyme at the time, and received subsequent steroid injections...not good for lyme - caused it to explode in his body), extreme muscle aches, was diagnosed in fall of 08 with fibromyalgia...finally sent him to an accupuncturist who asked about lyme...and that's how we finallly got to a llmd who put a name on the beast...

he has extreme ringing in his ears, sensitivity to sound and light, sometimes severe headaches, vision issues...ocular neuropothy - inflammation of the optic nerve, peripheral nerve damage causing burning, itching, stabbing tingling and shocking pains...had a high psa level in fall of last year which the llmd confirmed was most likely caused by the lyme (because dane sees a urologist regularly and he has always been in a very low range)...inflamed prostrate and difficulty urinating...had neurological tests done which basically ruled out other things like ms...spinal tap, mri of brain, emg which showed nerve damage in his legs...

he is on oral meds right now and we are expecting to start iv treatment shortly...the spirochetes days are numbered!!!

stay strong...maybe the llmd you are going to see will have a cancellation and you can get in earlier...will pray for you...

Carol

tickedoff
Regular Member


Date Joined Jun 2009
Total Posts : 56
   Posted 7/23/2009 2:51 PM (GMT -6)   
tryingAnYthinG,

sorry, didn't notice the side bar...thought i was replying to Amy C...

tickedoff (Carol)

bablymers
Veteran Member


Date Joined Oct 2006
Total Posts : 1458
   Posted 7/24/2009 12:54 AM (GMT -6)   
Welcome to the forum Amy! We are a lyme family too and we send our best wishes. bablymers family

veromia333
Veteran Member


Date Joined Mar 2009
Total Posts : 674
   Posted 7/24/2009 2:33 PM (GMT -6)   
wd like to see u more here
The line is faded not showing where Lyme came in. I became a new Mommy n my Lyme decided to show itself. Swollen elephant like knee and finger and limiting back pain. Bell's palsey, weight loss as if I had no muscle on my bones anymore. And much more text book lyme symptoms. To a Lyme doc, after alot of there is nothing wrong with you and a recommend to counceling,he said V this is Lyme. What kept me pressing on I had Lyme while I was pregnant. I know I was not infected while pregnant. I am watching her with an eagle eye. God Bless everyone. Love Veronica. Were the ones who know about Lyme not the doctors. Isnt that just mad? Backwards. Alice in wonderland.


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4282
   Posted 7/25/2009 5:25 AM (GMT -6)   
Hi Amy,
 
Welcome!  You came to a great place with very knowledgeable people as well as compassionate ones.  Wow, your whole family, that must be hard to deal with..  I feel for you.
 
Keep on posting and let us know how you and your family are doing.
 
Warmest,
Denise
It's all about the Immune System mixed with a large dose of Positive Thinking and Daily Detoxing   ~  Pay It Forward!!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 3 years:
 
 


ticker
Veteran Member


Date Joined Feb 2003
Total Posts : 9208
   Posted 7/25/2009 8:22 AM (GMT -6)   

Hi Amy C, welcome to the board!

I am sorry you and your family are all dealing with tick-borne diseases, but it is good you are all getting treated.  Many people are able to keep an infection at bay for some time until their immune system is additionally stressed and then symptoms emerge.  It sounds like this is what may have happened when you had the C-section and when your grandmother died.

It is  important to learn as much as possible.  You may be familiar with these already, but I recommend reading Dr. Joseph Burrascano's 2008 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne lllnesses  at http://www.ilads.org/lyme_disease/B_guidelines_12_17_08.pdf  He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols.   I also recommend the books "Everything You Need To Know about Lyme Disease Second Edition" by Karen Vanderhoof-Forschner and "The Lyme Disease Solution" by Kenneth B. Singleton M.D.

I hope all of your treatments go well.


Amy C
Regular Member


Date Joined Jan 2009
Total Posts : 45
   Posted 7/26/2009 1:12 AM (GMT -6)   
Thanks everyone for all the welcomes! I look forward to getting to know you all. I am usually on line more but this summer I have tried to enjoy my life since some of my fatigue is gone :) Plus it's not as hot as usual so I can go outside!

Right now I am just worrying about school starting in a month. You can read my posting on the 504 plans if you want more info. Ugh! I am dreading this!!
--------------------
One BIG Lyme family!! Possibly congential...
~I tested CDC positive 10/08
~My mom Igenex positive 11/08
~My brother Igenex positive 4/09
~My 2 boys some positive & IND bands, clinical diagnosis 3/09
~My youngest has Aspergers too (a form of autism)


Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 7/27/2009 2:02 PM (GMT -6)   
I understand how your feel. Same here...
Would love to share some tips for your kids and a Dr. that only sees kids.
Tap on me and I will share this info. with you.

School was impossible for my kids. They couldnlt even find there way around and did not remember where they were.
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