Please Help me But remember Protect Your Loved Ones….

[Admin]

Hello everyone, I am no doubt reaching out right now for help.
Months and months ago my son developed a rash under his arm.
The rash was like pimples. Of course he was taken to his pediatrician.
This rash was classified by his doctors as a viral rash. Was not treatable and would go away.
Next he had some neck pain and we no doubt noticed he had been tired.
But our doctors would check him out and give him a clean bill of health. He had also during this time started a 3 to 5 day a week Karate class. Karate would be a couple hours a night of great exercise. So he being tired made complete sense to us.
About a month and a half ago we rushed our son to his doctor. He had a pain in his hip that got really bad really fast. We were sent right to a bone specialist and the doc did x-rays and immediately sent us to children’s hospital! Basically this doctor saw something in the x-rays witch made him believe that our son may have had a problem with his bone in the hip socket.
Now this is when things really start getting upsetting to me.
We go to Children’s hospital in Philadelphia. We are supposed to feel great as we are at one of the best places in the country for taking care of your children.
Now they check my sons x-rays. My wife and I stop the doctors and nurses in there track and say, we want you to look at this rash my son has. They check the rash and say its just a small viral rash that will go away. I STOPPED THEM AND SAID! I WANT MY SON CHECKED FOR Lyme disease!
I was told that my son no doubt had a very small slip in his hip socket and they felt that a couple days on crutches and he taking it easy for a few weeks would do the trick.
Well this is where I feel I messed up so bad. I feel my request of having my son checked for Lyme’s should have been heard. Rash, joint pain. But me also thinking I’m in the best place on earth for my child, I should shut up and listen to the people who care and know best.
Well something I would really like to say about children’s hospital!
The time we sat in this room, solicitors came in.
We were visited by people who wanted info about our child. These people were working on studies, taking data about our child for future databases to help other kids.
We had visits from more people wanting good marks about the care and collecting data then my son had from doctors caring about his condition.
Well my son was sent home over a month and half ago on crutches. A couple days later his pain went away. Man what a relief my son is ok. Take it easy my man and don’t do any crazy kicking for awhile.
Wow 2 am Thursday the 31st of December 2009. My son wakes up screaming in pain. This time we were baffled his elbow was swollen and he was acting as if someone broke his arm in half.
Off to children’s hospital the best place in the world for our child.
x rays were done and results were negative.
We had brought up the rash again with the doctors.
The doctors now order blood work. But they are looking for inflammation in his blood. Also a test to see how long the inflammation was in his blood.
Well a couple hours later we are told our son has inflammation in his blood. The doc checks out my son. Finds fluid in his elbow and knees.
Now we don’t have the results at this point for the blood work that tells how long its been in his blood.
Next shift change.
Next we ask for the results of how long. Oh night shift forgot to put the test in. We will put in now.
We are told that they want our son to see a doctor for rheumatoid arthritis.
We need to call and schedule a appointment and the doc would have the blood results at that point.
So the next day possible we schedule a appointment witch is not till January 19th.
Well we sit and pass the days away.
Next on January 7th we get a call from Children’s hospital telling us that his blood work showed that he had Lyme disease.
She was calling in a prescription and we should follow up with our doctor and see if he wants us to keep our appointment with a rheumatoid doctor.
NOW HERE I AM AS A FATHER WHO HAS FELT LIKE HE HAS FAILED HIS CHILD.
I READ STUFF LIKE THIS
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The later phases of Lyme disease can affect the heart, causing inflammation of the heart muscle. This can result in abnormal heart rhythms and heart failure. The nervous system can develop facial muscle paralysis (Bell's palsy), abnormal sensation due to disease of peripheral nerves (peripheral neuropathy), meningitis, and confusion. Arthritis, or inflammation in the joints, begins with swelling, stiffness, and pain. Usually, only one or a few joints become affected, most commonly the knees. The arthritis of Lyme disease can look like many other types of inflammatory arthritis and can become chronic.

Researchers have also found that anxiety and depression occur with an increased rate in people with Lyme disease. This is another important aspect of the evaluation and management of this condition
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I have no one to speak to, no one that seems to know anything about this. I have to sit here and say no doubt do I believe my son is in the later stages of this.
But what can I do?
So look the smartest thing I can do is reach out to the public for info. Good data or a connection to a doctor who studies Lyme’s and cares about children. I need someone who cares. I need someone to speak to me and my wife and make sure we do everything right. We need to understand what we are looking for.
So I beg of you
ONE PROTECT YOUR CHILDREN AND PUSH FOR BETTER CARE. If you think your child may have something push for the tests. DON’T TAKE NO FOR A ANSWER!
I WOULD HAVE PAID CASH FOR MEDICAL WORK TO BE DONE. I don’t care about policy!
Please if anyone out there studies this disease please get in touch with me.
I will gladly pay to be seen and educated. My son is my life and I need to know that we understand of everything and that we take all steps to make sure we make the right steps as parents.

Thank you for your time.
Capt John Eppehimer
Webmaster and Owner of Sportfishermen.com

[Big Jay]

John I have a few Fam/Relatives with this disease. They all are seen by very respected Doctors in the field. Let me look into this and see what I can find out and maybe they can help you.

Hang in there my man.

[nautiduck]

John I cant imagine what you are going through, I hope these help.
http://www.lymediseaseassociation.org/

http://www.chroniclymedisease.com/llmd-referrals

From what I remember the later stages take many years before they manifest so treatment should still be effective.

[Big Jay]

Also John, two friends of the family who did have it were driving from Northern NJ all the way down to Atlantic City for treatment. So that must tell you something. Let me see if I can get a hold of them.

[seapower]

I have had Lyme's myself, the anti-biotic's made me as sick as the disease. Not trying to scare you just letting you know that he may be made sick by the drug's, we tend to think once we have the drug's in our system the sickness goes away, didn't for me. Just be prepared for this, incase. I would get ahold of the "King's Daugther's" Children's Hospital in Norfolk,Va. I had my oldest son there many year's ago for treatment, they were great!!! With the hospital being abit more South from you, they may have more experience with children and Lyme's. Also know that from what I've experienced and read, Lyme's does not just go away, it's the gift that keep's giving. Pretty tough stuff for some, of course like anything else, it may depend on the person's make up. Good thing is you've got identified and at least have a starting place. Frank

[OffTheHookB&T]

That's horrible. I give you credit for not freaking out on the hospital. Our thoughts and prayers are with you and your family.

[Admin]

Thanks for the thoughts and info and pm's.

Ill take all the info I can get. I no doubt can read for days and probably even months.

So getting some first hand info and recommended doctors would be a great start.

Thanks

[Fritz]

in touch with member Amber Lee {Ron}.

[WAHOONBOX]

PRAYERS GOING UP BRO.....


DANG IT.


THIS ONE TAKES THE WIND OUT OF ALL THE SAILS....

[southport05]

Hey Jon, I'm from Massachusetts, and there is a lot of Lyme disease up here. And even though we have some of the best hospitals in the country, LOTS of people in MA end up going out of state to get the best care for this disease. I've included below an excerpt from a newspaper article about this. It inlcudes the names of two doctors in CT who are considered to be at the top of the field in both dealing with the disease and helping families through it. Hopefully you can get in contact with them. Hope this helps.



....."Dr. Charles Ray Jones, 76, has more than 7,000 pediatric Lyme cases from every state and country in the world, including 400 families from Massachusetts, he says. He believes the federal guidelines for Lyme disease are too rigid and finds the test favored by many doctors to be unreliable. His preferred treatment is to keep a child on antibiotics for at least two months after all symptoms have disappeared -- in extreme cases, this can mean years of treatment.

''Lyme is very, very complex," he says. ''It's a horrible disease to have, and it's a challenging disease to treat." "......



....."Many patients interviewed by the Globe say their insurance companies make them pay large deductibles before out-of-network benefits kick in -- if they kick in at all. Blue Cross and Blue Shield of Massachusetts, for instance, provides full coverage for treatment of Lyme disease by network providers. But some people pay a higher rate for out-of-network coverage, while others have no such coverage.

'It's not a mystery'

Gesmundo says that once she found her way to ''Lyme literate" doctors, her family began to improve, bit by bit. She and her kids also see Dr. Bernard Raxlen in Stamford, Conn., a three-hour-plus drive from their house. Raxlen says he has treated more than 3,000 Lyme cases in the past 15 years, many from out of state. ''Tell me why Boston and New York, two megacenters of medicine, have patients who come here to Connecticut to see me, a neuropsychiatrist in Stamford. I'm puzzled as to why Lyme continues to be such a controversy. You observe the patient, you treat the patient, the patient improves, you've done your job. It's not a mystery."

Raxlen also notes the irony of doctors who will treat acne for months or even years with antibiotics. ''They don't blink an eye. But God forbid you do that for Lyme for even three months; you're ready to be tarred and feathered."......


Again, I hope this helps.