posted
Greeting! I refer to you now and then and wish I didnt have too but my problems seem to always come back to this nasty disease. I just finished reading andreas myspace and am tearful, mad and ****ed. I feel alone even though there are hundreds of millions of people suffering from this obnoxious disease.
Why cant i get a docotr to listen to my kid or me. Why cant I find a pediatric lymes doc to help me? I must hear a hundred times a day.... my head hurts. So many doctors feel its the shunt they placed in her head or the muscles repaairing from the tumor removal they did almost two years ago in a hospital that feels you can treat a child for 6 weeks intermittently and the lymes is gone forever. Oh lets not forget the steroid they had her on 4 different times. My daughter's case is so complicated because of the tumor they found in her head/ All the duck docs think shes in pain from that. We;ve seen so many icu docs. neurologist, pyschiatrist, behavioral docs and neurosurgeons and ionfectioius disease docs and all those years of study and money to put them thru med school and they still wont recognize that lymes is the culprit. Why Cant they read like obits of Andres..... which parallels my 16 year and realize Lymes can stay in your body.
God I need help, I dont know what to do. Dr j has no appoints till april 2010... he referred us to a neuro in ct... He wants 800 to 1200 to walk in the door. I would put this money out in a heart beat if I knew he would help her but Im not sure he would.. she is not seeing any one for lymes currently.
Yesterday the pcm put her on nitrofuratoin for a uti. SHe cried all night becasue her entire body hurt.... especially head, arms and shoulders..... I think this is the Lymes reappearing or just showings its dirty head.
November 2007 diagnosed w Lymes (proably had it for three months if not longer)
treated for a week w doxy. then went to iv ceftrioxone? treated for three weeks and then disconnect because they found a tumor in her brain... no meds for jan. Jan 28th tumor removed and placed on steroids.
Between feb and april 1 went back and forth to the hospital after being weaned off steroids Diagnoses aseptic menningitis...? Lymes menningitis? During this time they treated her intemittently with rocephin
April 1 vp shunt placement due to increased pressure. I know many on here said not to do it but at the time I had no other outlet. Have her in pain or relieve the pain. Plus you know you are suppose to listen to the ducks. I even had a neuro surgeon from another hospital agree w my neuro. didnt realize until latter they went to school together and thats what neuros do..
So since then we have been in an out of the hospital for severe headache... The lastest diagnosis was ... " you know girls at this age 15/16 have reoccurring headaches for no none reason so here is some amitriplyne so she can sleep??? RIGHT?? she still doesnt sleep!!!!
SOmeone tell me what to do! I am ready to take her to Columbia u ER and camp there! And now I read the post about Andera adn I feel like my body is going to explode, not from the food I am eatting trying to relieve the pain but from just not being able to do anything. Moms are suppose to FIX everything. Im sure PAb can help me she has two boys to deal with. If I dont find someone to help her I am going to need to increase my antidepressant and go in for therapy too... Oh yeah we are doing that too for her!
The latest blood work showed only IGG for lymes so of course the pcm says she is cleared of it.
I wish a doc would read this and say.... ah complicated case I need to see this child.I need to help this kid.. but it will never happen. I thought docs were suppose to help kids and their patients. SHe once told me that her "doctor would be more responsive if I was his kid."
Why cant I get someone to listen?
Posts: 21 | From NJ | Registered: Mar 2008
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posted
My daughter is also haveing neuro symptoms... brain fog, forgetfullness, moody... all symptoms that the docs can say are a "typical teenager" but trust me this is not typical. She knows that she is losing her short and long tem memory.
Posts: 21 | From NJ | Registered: Mar 2008
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posted
First, let me tell you that I am sorry that you are without answers about how to help your daughter. It does not sound like it is from lack of trying. I know first hand how hard it is emotionally when we can't seem to help our child.
I had a 6+ month wait for my daughter to see Dr. J. There was a cancellation and we did not have to wait that long. They will put you on a cancellation list if you ask.
I needed Dr. J to rule out/rule in lyme in my daughter's complicated case. I figured if he said it was not possibly lyme, then I needed to travel down another road looking for answers, even though most roads had already been exhausted.
As for the money, I already had huge medical bills racked up for her. I considered the llmd visit as so important, given her history and symptoms that I decided to move forward and pay. It was well worth it. It is a shame that the medical insurance (that I pay for!) does not cover visits, but if this is the only way that I can get her seen by the best pediatric llmd, then so be it. Something terrible took my daughter as I knew her away from me. I can't leave any stone unturned trying to bring her back.
Hope that you are able to decide what is best for you guys and also get some answers.
-------------------- I found my original identity! It has been a bit over 12 years...can't blame me for forgetting my password, right?!!
Member red (Member # 1886) Registered: 26 November, 2001 70 posts Posts: 164 | From NJ | Registered: Jan 2009
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posted
did he help? Have you gotten you daughter back? I agree with you I cant leave any stone unturned but today Im at my witts end? I will call and make another appointment and put her on a waiting list as well.
Posts: 21 | From NJ | Registered: Mar 2008
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posted
She was just seen recently so her journey with him has just begun.
I too was nuts about having to wait and feeling like there was no where to turn for help. But, because of a cancellation, she was seen earlier.
I would recommend getting everthing in order (her history to him, plans for last minute travel, etc)as soon as you make the appointment. This way you are good to go when they call as it is usually last minute.
All the best.
-------------------- I found my original identity! It has been a bit over 12 years...can't blame me for forgetting my password, right?!!
Member red (Member # 1886) Registered: 26 November, 2001 70 posts Posts: 164 | From NJ | Registered: Jan 2009
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posted
I have felt the same way you feel not that long ago! I knew both my kids had congenital lyme but noone would listen. I would just sit here and cry because I couldn't get anyone to believe me or test them. Not even my own LLMD!
Then I just started asking everyone I could if they knew anyone. I ended up finding a natural dr that also is an MD but only does natural now. Her entire family has lyme so she doesn't practice regular meds anymore.
So she was referred to me and lives about 8hrs and we up and left 2 days after I 1st sent her an email. She ordered the tests from Igenex. It took me awhile but I found a lab that would do the draw and sent them off.
Once their tests came back with some positive and IND bands I made an appt with my LLMD (who also sees kids). They only went to him once and now we travel from Ohio to Wisconsin to see a new LLMD.
There are other LLMD's out there that see kids. Ask in the doctor section or go to Turn the Corner Foundations website.
I know it's hard but you have to do what you think it right for your child. Go with your mom gut instincts and don't give up!!
(hugs) Amy
-------------------- My lyme disease blog: http://lymetimes3.blogspot.com/ One BIG Lyme family! I tested CDC + 10/08 My mom Igenex + 11/08 & My brother Igenex + 4/09, My 2 boys some + & IND bands, clinical diagnosis 3/09 (youngest has Aspergers too) Posts: 470 | From Painesville, Ohio | Registered: Mar 2009
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posted
I guess I would try to get the attention of a LLMD and let him know your situation. My sister (33 years old) passed away from a brain tumor 9 years ago. Two years after her passing I became very ill. I have been in bed for 7-1/2 years now getting nowhere with docs. I started lyme treatment in april 2009. I just went to llmd last week. He says he is pleased with my 40% improvement since April. He told me my sister's brain tumor could have been lyme related. My mom has since found an article connecting the two...... pray pray pray.... God will get you there God bless.
Posts: 68 | From chicago, illinois | Registered: Jul 2009
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
I am sooo sorry your daughter is going through this. Has she been treated for PARASITES and WORM? They play a MAJOR role in Lyme disease.
Worms can ball up and be mistaken for a tumor which happened to a woman in Arizona not too long ago. Willy Burgdorfer found adult Filarial Worms in the tciks he dissected back in the 80's. Check out
This is what came pouring out of me when I started salt/c. I didn't make any progress until I started getting rid of parasites and I was on antibiotics for 4 yrs.
I also use antiparasitic herbs. Do a search on here and type in parasites and lyme. Please don't ignore this possibility,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
I hear your pleas for help, and I'm so sorry that no one in the medical community is listening to you.
I went through the same thing with my daughter: Docs saying it was just her age, wanted to put her on amitryptilene--sp?--NO ONE listened to us.
I knew in my heart it was Lyme, not sure why I knew this, since we always checked for ticks and only found one on her way back in 2005 and nothing seemed to come of it--surprise, surprise 3 years later!
I agree with Pepperspeck completely. I chose to take her to see Dr. J because I figured at least he could confirm or deny that she had Lyme, and we could proceed from there.
We also had a 6 month wait, but we asked to be on the cancellation list and got in very quickly.
The cost is prohibitive, and we don't have a lot of money, but we had to do it somehow. We had already spent a small fortune following other leads that were useless. We felt that we had to get that definitive direction from Dr. J, i.e., Lyme or not.
We have been treating Lyme now for a little over 4 months and Bart a little over 3 months. We have seen improvement in her Lyme symptoms and energy level (Bart?).
She still has symptoms--ongoing headache that has been constant with no relief for over a year, all-over body aches, and jaw/teeth pain--but we haven't treated Babs sufficiently yet, and we are thinking those symptoms may be from that.
I wish I could say she is doing 100%, but treatment takes time. You definitely learn to be patient with this illness.
I hope you can see Dr. J so that you have a clearer sense of what path to follow.
It is awful to see our children suffer but never give up hope.
You are being a great mom with everything you have done to help her get well.
My thoughts and prayers are with you.
{{{{hugs}}}}
Posts: 648 | From northeast | Registered: Feb 2009
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