posted
I havent posted since my last cry for help way back in March of last year desperate to help my daughter.
Some nasty little pain *** disease has made me think about posting again
My daughter was diagnosed with Lymes in Nov. 2007. We were aggressive treating her w IV therapy but in January the doctors found a benign tumor in her brain. Hence they opened her up and removed it.
All this time the docs are telling me that she was THROUGHLY treated for Lymes. I went againt medical advice and continued to give her the IV therapy while she was in the hospital that the LLMD prescribed her. Even the neurosurgeons agreed it couldnt hurt her, but ID said they were still sure she had enough treatment.
I told ID that if she was sick later w Lymes that she was coming to his house with her suitcase. After the tumor removal, she had aseptic menigitis everytime they weaned her off the steroids.... each time (5X)she would become sicker. Her head would throb so bad.....
Four months after the tumor removal they decided to put a vp shunt in. They tapped her an her spinal fluid was off the charts. This relieved her for a short while but the headaches came back.
Many told us her pain was "from the surgery", your daughter has been through hell", give it time" its a normal part of recovery".
Well its been over a year since the shunt placement and she still suffers from everyday headaches. In the morning she feels like she is being siphoned to death and at night she feels like she has so much pressure....
she NEVER sleeps. She takes pills by the handful... gabapentin.
This week we went back to ICU. dumb a** doctors.... they had her on steroids, morphine, tordal, you name it she took it this past week.
SO they tested her spinal fluid pressue, did their ct scan and mri everything was neg. and discharged her. Still complaining and crying they sent us home and increased our gaba from 900mg/day to 3600mg/day.
They did send her csf out for Lymes testing(PCR) I am certain it will come back neg. but I wonder if she still has Lymes or needs to be treated. Her spinal fluid was clean this time but way back last year they did find IGG antibodies in her spinal fluid as well as protein adn pleocytosis.
I would give anything to get rid of these headaches. Any recommendations.?
I am thinking about getting all her medical records and heading somewhere to get her help... just not sure where. We had aLLMD but her was a tad behind times. I need a team of ped docs but not any from the philly area! UGH!!!!
I have made contact with Pab adn it sounds like we are in the same boat without paddles and a big hole in the middle of it.
Posts: 21 | From NJ | Registered: Mar 2008
| IP: Logged |
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
I'll find your old topic and bump it to the top so you can see the old responses & hopefully get some new help.
Hang in there.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
| IP: Logged |
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Your old post was in Lymenet Medical. If you'll go over there you'll see it at the top of the list...under the stickies.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
Not able to read what you wrote but caught the part where someone directed you to your old post.
Thought the above URL might help.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Has your daughter been treated for parasites and worms? They play a MAJOR part in Lyme disease. Burgdorfer found adult Filarial Worms in the ticks he dissected back in 1984.
This is exactly what came pouring out of me and started me on the road back. I urge you not to ignore this,
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
| IP: Logged |
hshbmom
Frequent Contributor (1K+ posts)
Member # 9478
posted
Waterfam, you can click on the link in kam's post above to take you to your first post on Lymenet.
You can update there and will likely get more responses on the medical forum.
Posts: 1672 | From AL/WV/OH | Registered: Jun 2006
| IP: Logged |
posted
waterfam, i am so sorry that your daughter is still in pain.
i just read your old post then saw this.
On the old post there were a few very good suggestions. Did you ever look into seeing Dr. J ?
Was she ever tested for the coinfections? or txd for any?
If i read correctly, it does not sound as though she was txd for very long.
I hope you can find her the correct help very soon.
She is in my prayers.
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
| IP: Logged |
posted
Her headaches might not have anything to do with lyme, but rather with her shunt placement. I have a friend with a shunt & headaches were her biggest complaint. Her shunt ended up malfunctioning & she had to have it replaced.
I'd go that route first.....
Best wishes with your daughter.
-------------------- Mom to a 5 year old lymie.... Taking it one day at a time. Posts: 182 | From Ipswich, MA | Registered: Jul 2008
| IP: Logged |
sometimes patients and their families think that all an LLMD wants to do is prove you have TBD's
not true
I have seen a few LLMD's, they are the best and none of them took this dx lightly.
I had never been so thoroughly taken care of until I met them.
Please find a true LLMD and get another opinion.
(I have 3 sick children who are all near being completely healthy b/c of tx)
-------------------- This is NOT medical advice - and should NOT be used to replace your MD's advice. Info is only the opinion of those who publish the site.
The shortest way to do many things is to do only one thing at a time.
cb Posts: 669 | From somewherebetweentherocks | Registered: Mar 2008
| IP: Logged |
posted
My daughter was never tested for coinfections. I tried yesterday to get an appointment w dr J. Ic ould if I wanted to wait till March 2010..... told them she would be dead by then. They referred me to a neuro who wants 800 to 1200$ for he rfirst appointment... doesnt accept insurance... I made an appointment anyhow.
I do not beleive she was treated long enough either. We saw her pcm today who was VERY proactive. They referred me to a Lymes doctor in nj. He also is doing a bunch of alb work looking for coinfections. So I felt like I was making a direction.
The doctors at her hospital in philly feel that the shunt is working well??? But my concern now is her leg/groin and arm pains have returned so I am sure its backkkkkkk!!!
Thanks njlymemom your message gave me the ability to fight a little more. I was not happy w our llmd.... I wish he would have been more productive when the other docotrs were putting in shunts and not considering he lymes.
Posts: 21 | From NJ | Registered: Mar 2008
| IP: Logged |
We were in Dr. J's office on Friday and his schedule is truly backed up until 2010.
Ask if you can get the first possible appointment if there is a cancellation. It's a long drive, but he is absolutely worth it.
There was a 7 yr old girl in the waiting room who is now out of her wheelchair and able to walk. Every time we have been in that waiting room, we have met other families with incredible, hopeful, inspiring stories and the kids right there to prove it!!
If there is any way you can make the drive with 24 - 48 hrs notice - you will not regret it, I promise!! He is the best, most knowledgable Dr we have met.
Posts: 18 | From Houston, Texas | Registered: Aug 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic