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Dr says no to Lyme testing????

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Old 10-23-2007, 07:08 PM   #1
Join Date: Oct 2007
Location: little rock arkansas
Posts: 4
texasfire HB User
Dr says no to Lyme testing????

I haven't been able to do a lot of research lately, so I hope that if anyone has any ideas, please share them with me.
I wrote a week or so ago on the General Discussion boards titled my 8y/o with chronic fevers. My son has been sick with some sort of "illness" since September. He got really sick at the beginning of October, and we were really frightened for his life. They hospitalized my son, and gave him IV Vanc, Doxy, and Clafrin for 4x days. He was treated for suspected Rocky Mountain, although he had no known recent hx of tick bites. He dramatically improved within 24hrs and they sent him home on doxy for 7 days. While he was on it, he did great, he got his energy back, no fevers, feeling pretty good. We were almost convinced that the Infectious Diseases doctors at Children's actually dx him correctly. After the seven day course, he developed fevers almost immediately after stopping and has run a low grade fever that spikes off and on since last Tuesday. He has missed a month of school, so he hasn't been there to pick up anything. I have called them almost every day and I know that I must be annoying b/c the ID nurse is beginning to become hateful with me everytime I talk with her.
I took him back in on Monday because he developed rt sided flank pain on Saturday and fevers have increased. They tested his urine and came back negative. They went ahead and redrew blood for titers for RMSF and another E??? something tick borne, but when I asked about Lyme, the doctor said he doesn't even test for it because those types of ticks are not native to our area and it definately wouldn't be that. They never drew blood for it while he was in the hospital, but had one done wayyyy back by the original pediatrician when he first got sick. (september) My doctor's response today after round trip to see him again? Put him back on remainder of Doxy if he runs a fever again tonight, but we want to do ANOTHER MRI on Friday b/c they are thinking he might have some type of MRSA in a bone that has migrated to his back! I don't think this is it. He's had CT's MRI's and Xray's with nothing conclusive. Im tired of the roller coaster and nobody has any answers.
His CBC was beautiful and his c reactive protein was less than 3. Wayyyy down since he was hospitalized two weeks ago. My question? What is causing this fever to linger? Is this typical after a tick borne illness and if so, how long? He said he was going to put him back on Doxy but for how long, I have no idea. What is they typical length of tx for Lyme or RMSF? Should I get a second opinion? The hospital/doctors are all out of answers and I need to find one. Can anyone recommend where I start? I don't know what to do.

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Old 10-24-2007, 06:29 AM   #2
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ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
Re: Dr says no to Lyme testing????

Hi texasfire. I responded to your post on the other board.

Lyme disease is in every state. I cannot understand doctors who tell people that it does not exist in a certain area. This is ignorant and dangerous. I was told this also. It led to a delay in getting diagnosed. When I was diagnosed, I had five tick-borne illnesses.

I think your son's reaction to the antibiotics is significant.

They may be testing him for Ehrlichiosis. There are two types: Human Monocytic and Human Granulocytic. It is important to be tested for these by a Lyme lab such as IgeneX in Palo Alto, CA. Most Lyme doctors use this lab for testing. They have more sensitive tests.

I do not think the nurse should be nasty to you. Your son is sick and you are trying to help him.

If he has tick-borne illnesses, he has not received long enough and possibly not aggressive enough treatment. There is one Lyme pediatrician in the country: Dr. Charles Ray Jones in New Haven, CT. I highly recommend calling his office for advice. From all I have heard, he and his staff are wonderful. He has seen patients from all over the country, and he has helped many children. If my child was sick like this, I would call him.

Learn as much as you can. As I stated before, I recommend reading Dr. Joseph Burrascano's 2005 Diagnostic Hints and Treatment Guidelines For Lyme and Other Tick Borne Illnesses (on-line). He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. I also recommend the book "Everything You Need To Know about Lyme Disease
(2nd edition)" by Karen Vanderhoof-Forschner.

Do not give up! You will find out what is wrong. I hope your son feels better soon.

Old 10-24-2007, 03:48 PM   #3
Join Date: Oct 2007
Location: little rock arkansas
Posts: 4
texasfire HB User
Re: Dr says no to Lyme testing????

I gave him Doxy last night and early this morning. His old Rx was 50/5ml 1 tsp BID. I called the doctor this morning to let him know that in fact I did start him back on it and needed another RX. He gives 50/5ml 3ml instead of 1tsp, and for only ten days. The pharmacist questioned it and I did too, but yes indeed, he wants him on a lower dose. For what? No one could explain.
I made several calls today to try to get an out of state referral and I did call that MD in CT. No one from his office called me back today and the other specialist didn't call or they wouldn't see him without a referral from his PCM. Our primary care doctor has all but abandoned us and refuses to call me back or speak to me. The last time I called in, they were rude, degrading and unprofessional. I took him to another peds doctor to see if she would be willing to accept his assignment and to help us out since it seems as though we have been "fired" from his primary, and she refused to accept him as a new patient. I don't know if it's due to liability issues, but she just told me to trust in whatever the ID doctor told me and basically to go away. She found fluid in his rt ear today and said it needed to be followed up but she acted like she was scared to have him as a patient. I don't know what Im going to do. What do you do when a doctor is doing a half baked job dx your kid, telling you to sit on your hands and wait, playing "God" so to speak, or on the other hand no one else is willing to help you for fear of liability or not going through proper channels...WHAT IS THE PATIENT SUPPOSE TO DO IN THE MEANTIME??? How do people see doctors elsewhere? I thought what I did was right, but so far I've come up empty handed.

Old 10-25-2007, 09:04 AM   #4
Join Date: Mar 2007
Location: MA,USA
Posts: 421
zandvoort HB User
Re: Dr says no to Lyme testing????


I am so sorry you are going through this with your son. I think this disease is hard enough when us adults go through it but if I had to go through this h*ll for my child, it would be way worse.
I do not have much more to advise than Ticker- I definitely would see an LLMD- no matter how much you have to travel. I have heard Texas is really hard for the LLMDs. I read on this site of 2 LLMDs that left Texas due to the political scene there. It does not leave you with many options other than travel.
I would bring my child to Dr J without a question.
Best wishes for a speedy and full recovery for your son.

Old 10-26-2007, 05:26 AM   #5
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ticker HB Userticker HB Userticker HB Userticker HB Userticker HB User
Re: Dr says no to Lyme testing????

Hi texasfire. I am sorry you are going through this. It is terrible that these doctors are not willing to help. I am sure they would feel differntly if it was their child.

I am really surprised Dr. J's office has not called you back. I would call again.

Keep us posted okay?

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