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Old 07-14-2006, 11:24 AM   #1
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not sure if my daughter has lyme disease

Hi,

My daughter, who just turned nine, was bitten by a tick on her scalp during the week of June 19 when she went to a camp near Palestine, Tx. She found the tick on her head, and it had to have been on her head for a minimum of three days. It was engorged. We removed it and three days later, the doctor removed the mouthpiece. She does not have the rash, but there is a bump at the bite location. The doctor didn't perscribe anything.

Two days later she complained of what she said was stomach pain but she pointed to her chest near her heart (this occured on two occasions on two days). Three days later we went to another doctor, while on vacation in Canada, because her glands on her neck just down from the bite were swollen. He gave her zithromax and it didn't change anything.

Just on Monday, the doctor said it was normal to have swollen glands. She still has a bump at the bite location. The doctor then finally perscribed doxycycline. I debated getting it since I understood that it stains the teeth. But today, she tried to do a summersault and couldn't - she said that she had back pain which started earlier today. The liquid version of the doxy is being prepared for her and she is to take 100cc over 10 days.

I'm not sure if I'm worrying for nothing. I've asked for her to be seen by a specialist but I guess because we don't have PPO insurance, they're giving me a hard time about it. It's now been at least three weeks since she had the bite and I don't know if I should insist on seeing an infectious disease specialist without trying the doxycycline.

Any advice would be greatly appreciated.

Thanks,
Sandra

 
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Old 07-14-2006, 01:14 PM   #2
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Re: not sure if my daughter has lyme disease

If it were my child I would be safe and get an appointment with a LLMD (Lyme Literate Medical Doctor) for further evaluation. If you can catch this early then you are way ahead of a lot of us here. Please let us know if you need a recommendation. Also, keep us updated.

Good Luck.

Cindy

 
Old 07-14-2006, 01:31 PM   #3
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Re: not sure if my daughter has lyme disease

Hi Sandra, welcome to the board!

How was the tick removed? Did you save it by chance? If so, it can be tested for disease at IgeneX lab in Palo Alto, CA.

I am sorry your daughter is sick, I know it is heartbreaking. Since her symptoms started shortly after the tick bite, I would be suspcisious also. Although a bullseye rash is a definite sign of Lyme, only about 50% of people who have Lyme ever get a rash.

Lyme disease is a multi-system bacterial infection caused from the bite of an infected tick. It can cause many different symptoms. It is the second fastest growing infectious disease in the US after AIDS and the number one vector-borne disease in the US. It is in every state.

A few tips about Doxy. Do not have any dairy, magnesium or iron products two hours before or after taking it or it will not be absorbed properly. If it makes your daughter nauseous, have him her something substantial and non-dairy before taking it. Have her drink a full glass of water when she takes it. Avoid the sun. She can get a severe burn in minutes even when wearing sunscreen. Tell hier not to lay down for at least an hour after taking it or she can ulcerate her esophagus. This is very painful!

Be aware of the Jarisch-Herxheimer Reaction (herx). Often, when people who have Lyme take antibiotics, their symptoms become worse or they get new ones. When the antibiotics kill the bacteria, toxins are released making them feel sicker. It can be very scary when it happens, but it is a good sign the antibiotics are working. Although it can vary individually, many people experience this at the beginning of treatment and every three to four weeks.

During treatment, it is a good idea to document her symptoms daily. One way to do this is to list the three main symptoms she has each day and a numerical rating of their severity, from 1-10. Over time when you review this, you can see when her herxes occur and how she is responding to the meds.

It is important to learn as much as you can. I recommend the book "Everything You Need To Know About Lyme Disease (2nd edition)" by Karen Vanderhoof-Forschner, and reading Dr. Joseph Burrascano's Treatment Guidelines. He is one of the top Lyme doctors in the country, and many Lyme doctors follow his protocols. He also discusses antibiotic choices and doses for children. Please do find out about giving Doxy to children.

It is very important to see a knowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. Often, infectious disease doctors are not the best to see for Lyme disease. Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Many people who have Lyme are co-infected, and it may affect treatment choice and progress. It is important to be tested for these by a Lyme reputable lab such as IgeneX in Palo Alto, CA.

Where are you located? Dr. Charles Ray Jones in New Haven, CT is the best Lyme pediatrician in the country. I suggest calling his office regarding the meds. Maybe your daughter's pediatrician could consult with him about treatment.

If your daughter has Lyme, it is good that her infection is early. This is the best time to eradicate it. Getting the proper treatment now may reduce the chance of long-term complications. Under-treated or untreated Lyme or tick-borne illnesses can be serious.

Hang in there okay? Good help is available and you are not alone.

Last edited by ticker; 07-14-2006 at 01:33 PM.

 
Old 07-14-2006, 07:07 PM   #4
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Re: not sure if my daughter has lyme disease

Saying a prayer for your daughter. Marsha

 
Old 07-17-2006, 07:33 AM   #5
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Re: not sure if my daughter has lyme disease

Thank-you everyone for your replies, support and prayers

I started the doxycycline on my daughter on Friday. The doctor prescribed her 50 mg/50cc, I believe is how it was written. She is to take 5 ml twice a day for 10 days. I was concerned that, based on what I read, it may not be long enough. I called her doctor's office to get a referral to a specialist and they tried to pass me off to a dermatologist! Go figure!! Anyhow, finally, I spoke with a doctor (not her regular one) and she extended it to 14 days - maybe because of my concern.

Anyhow, the swelling of the bump on her scalp is going down after taking the medicine 5 times and her lymph node is also less swollen. I think it might be working - although I'm not sure if she should stop after 10 days or go for longer. My dilemma is that she's scheduled to go to another girl scout outdoor camp next week, when she'll be on her 10th day of medication. I know she shouldn't be in the sun while taking it, so it's either cancel the camp or stop the medicine after ten days.

Anyhow, to answer some questions - we pulled out the tick with tweezers but didn't get the whole thing out - the doctor got the rest out three days later. Unfortunately, stuff gushed out when it got pulled - so although I kept the tick (in alcohol), I don't think it can still be tested - is that right?

We live near Dallas and I called around for specialists and was told that there is only one in this area (in Ft. Worth). Because of this, they're only able to take her in September. If that's the best I can do, I'll take her to at least be tested to see if the medicine worked. Does anyone know if a regular doctor can arrange for the tests to be done? Or maybe I'll suggest that her doctor consult with an LLMD specialist

I appreciate all your help. I'm very happy to have found out about this message board. Having read other postings, I wish all of you the best and hope everyone gets better soon.

Take care,
Sandra

 
Old 07-17-2006, 07:48 AM   #6
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Re: not sure if my daughter has lyme disease

Hi Sandra. Ten days of treatment is never long enough for Lyme disease. From what I understand, an infection caught within two weeks of the bite should be treated with a minimum of six weeks of the proper dose antibiotic. The antibiotics kill the bacteria when they are reproducing, which is estimated at four weeks. Six weeks of treatment will cover one growth cycle. If symptoms are still present, further treatment is warranted. A longer infection needs longer treatment. Please take this seriously. Early infections are the easiest to treat.

Regarding getting the tick tested, it may still be possible. Call IgeneX lab in Palo Alto, CA to see. That is where I would recommend sending it.

There are not many Lyme doctors in the country, even fewer Lyme pediatricians. Dr. Charles Ray Jones in New Haven, CT is the best. I highly recommend calling his office regarding your daughter's dose and to see if he could consult with her doctor.

Definitely do not let her in the sun when on Doxy. Some people who take Doxy even get their knuckles burned from the sun coming into the car when they are driving! If you call Dr. Jones, I suggest asking if another antibiotic would work as well so this would not be a concern.

Good luck. Remember to be on the look-out for the herx reaction.

 
Old 07-17-2006, 08:01 AM   #7
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Re: not sure if my daughter has lyme disease

Hi Sandra,

Sorry your daughter is ill. I do hope you are able to get her to a competent doctor. When I was a child, I was infected with Lyme and left untreated and eventually became so ill I couldn't go to school and missed almost a whole year. Throughout my life, I had symptoms off and on, sometimes debilitating, and now 20 years later here I am still battling it.

This is a very complex disease, and unfortunately there is a lot of ignorance that remains to be cleared up among the medical establishement. Part of the reason for this is that it can be a very costly disease to treat (far less so if treated aggressively early on) and that means insurance has to pay out big time. Doctors have been harrassed for this. I used to believe that type of thing was a lot of conspiracy theory nonsense, but after what I have seen and heard I realize it is true.

I hope you are able to get your daughter decent care. To begin with, can your primary order some tests, such as at least a Western Blot through Igenex? Don't let anyone tell you "there is no Lyme disease outside of New England or the east coast", that is baloney. Ticks also carry several co-infections and many people with Lyme have one or more.

 
Old 07-17-2006, 06:24 PM   #8
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Re: not sure if my daughter has lyme disease

I was treated for 10 days 19 yrs ago. Today I have chronic lyme and several Co-infections they didn't even know existed 19 yrs ago. Please take this very seriously and seek out a LLMD. Get the testing done from Igenex, but remember that test are inacurate in alot of cases.
Prayers for you and your daughter.....Marsha

 
Old 07-19-2006, 08:29 AM   #9
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Re: not sure if my daughter has lyme disease

Hi guys,

Thanks again for all your great advice.

I will call Dr. Charles Ray Jones and hope his office can give some advice or consult with my daughter's doctor. I called Igenex and although they said they could test the tick, the most important piece (the head) is missing. The doctor pulled it out and I'm guessing he disposed of it - I need to check on this. I'll also ask that he gets the Western Blot test ordered for her. It looks like it's going to be hard work to get this accomplished - but I'll willing to do what it takes to get this done right. Once again, thank you so much for your wonderful advice and I hope things will work out well for my daughter and for all of you.

I will keep you posted.

 
Old 07-19-2006, 09:24 AM   #10
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Re: not sure if my daughter has lyme disease

Good luck sfabiano. I hope you can get some help soon. Please do keep us posted.

 
Old 07-19-2006, 12:43 PM   #11
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Re: not sure if my daughter has lyme disease

Hi all,

Well, my daughter's doctor doesn't believe she has lyme disease since the camp area is not considered endemic. I asked the nurse if she asked him about getting her tested and it seems like she forgot to ask. He also did dispose of the tick's head... Of course, without testing, it's a mystery as to whether she has it or not.

Based on what the nice lady at Dr. Jones' office told me, and I relayed to the nurse, they gave her a new prescription of 100mg twice per day of doxyclycline for 28 days.

Do you guys think this is good enough? Do you think I should insist on seeing an LLMD? Of course, the only one around here will only see Julia in September... Should I insist on the Western Blot test? Maybe if I do, is it better to have it done now or after the medication?

Thanks again!
Sandra

 
Old 07-19-2006, 01:35 PM   #12
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Re: not sure if my daughter has lyme disease

Hi Sandra.

An area does not have to be "endemic" to have Lyme! Some of the comments made by members of the medical community floor me.

Lyme is the second fastest growing infectious disease in the US after AIDS. It is in every state. There is a lot of Lyme in Texas. A few years ago a Texas senator contracted it and tried to pass legislation to make treatment eaiser.

I am glad Dr. J. extended the antibiotics. I would call his office to ask if that should be sufficient, if she should be tested, and if so when.

Hang in there okay? You are a good mom. I hope Julia feels better soon.

 
Old 07-20-2006, 07:28 AM   #13
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Re: not sure if my daughter has lyme disease

Thanks again for the advice. I agree that just because it may not be considered endemic, does it not mean she has lyme. I made up my mind to call Dr.Jones' office again today and ask for more advice. If I need to pursue things with her doctor, I'll use that information about the senator.

I'm hoping that despite all the wrong medicine/wrong dosage, we're catching this early enough.

Once again - I sincerly appreciate it!

Have a wonderful day!

Sandra

 
Old 07-20-2006, 08:56 AM   #14
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Re: not sure if my daughter has lyme disease

I called Dr. Jones' office again. It seemed that they were very busy, so I didn't get as much advice. However, the lady did tell me that they don't usually prescribe doxy due to side-effects of the sun exposure. She mentioned Zithromax (that Julia took but didn't bring down any swelling), and then mentioned omnicef and others that I can't remember.

Does anyone know of Omnicef being effective? I did read this from Dr. Ray Sticker:

"Now, combination therapy has evolved over the last few years. The principle of combinations is generally to use a macrolide such as Clarithromycin or Azithromycin combined with something like a Cephalosporin such as Ceftriaxin and more recently Omnicef. The idea being that these are really synergistic antibiotics, the Cephalosporin gets into the cell and kills the bugs in the cell whereas the macrolide works outside the cell and can kill the bugs when they come outside the cell. In particular, Omnicef with Biaxin or Zithromax has become a very, very effective treatment for Chronic Lyme Disease and this should probably be the treatment of choice for patients who have primarily musculoskeletal disease except for the fact that they are relatively expensive and thatís limited their use over Doxycycline. "

I'll also check the message board for related questions.

Thanks!
Sandra

 
Old 07-21-2006, 07:59 AM   #15
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Re: not sure if my daughter has lyme disease

Hi again,

I'm up a creek.

I just called Dr. Jones' office again and this lady said that they usually prescribe Omnicef or Zithromax, but not Ceftin which is what Julia's doctor is only willing to give her. The lady also said that switching antibiotics (I assume in the middle of treatment) is not recommended because it's a field day for the bacteria and they multiply.

I already told her that she can now go to the camps we had planned since she would be off of the doxy, although now I think I made a mistake.

Julia's only symptoms right now are swollen lymph node and swollen at her tick bite. She did say that her back sometimes hurts when she does a summersault or jumps - although I'm not sure if it could be because of lyme.

Her doctor doesn't want to call Dr. Jones' because he doesn't believe she should be treated.

I know you guys are doing the best to help me and that you're not doctors. But maybe if you can tell me if you've ever taken Ceftin and for how long and if you ever stopped an antibiotic in the middle of it's course, I'd appreciate it.

Thanks so much!
Sandra

 
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