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Old 09-01-2006, 09:47 PM   #1
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Help!! Daughter needs disgnosis

My daughter is very ill and has been in and out of the hospital for the past three and a half weeks. It started with painful swollen glands and ten hours later, she developed a stiff and painful neck and spinal pain after which she developed a terrible headache. The first trip to the Er-they did a spinal tap looking for menigitis, which came back NEG.after that she got the spinal headache becasue of fluid leakage, they did a blood patch and everything was fine, however she still had the stiff neck and spinal pain. Other symptoms she had were a low white blood count-(they did suggest it was viral )which since is gone (it lasted for 19 days) this is going on three weeks (second stay in the hospital)and she still has no relief. She needs help getting up and down-and after she lies back down,she gets a temperature-she looks flushed out and she is clammy. She has had an MRI-which came back NEG.-Cat scan-NEG.-blood work -NEG. SHe has been tested for West Nile, MS, cancer, etc.. all coming back NEG. also her neck and spine is sensitive to touch. They think it may be psychological- but I know my daughter and no one is that good of an actress. Something is seriously wrong. Some doctors have suggested that the virus had somehow gotten in her spine and neck and wrecked havoc. Is this possible? PLEASE HELP US!!!

 
Old 09-02-2006, 05:32 AM   #2
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Re: Help!! Daughter needs disgnosis

so sorry for what you and your daughter are having to go thru.i am wondering if she has seen an infectious disease specialist yet?they don't just deal with "infection" type of illnesses,they specialize in finding the causes of symptoms such as would stem from infectious agents and also viruses.yes,it IS possible to get a virus that can localize just about anywhere in the body unfortunetly.

do you happen to live near any sort of a university teaching hospital,even within a few hours drive from you? if so,it would be worth the time and effort to get her to see an infectious disease type of doc at this type of facility as they are 'up' on all the latest diseases and viruses and other possible illness related info.they also see the worst of the worst and handle alot of the more obscure types of conditions not seen alot in other patients,the rare disorders?

this type of facility also offers a wide array of specialists right there on hand and availiable almost immediately for any consults within another area of medical specialties.

it sounds like she has had alot of testing done but there are many many more types of tests that are realistically only availiable thru the universitys.this really would be the best place to take her if possible.

i am sorry i cannot offer you any real clues here as to the possible cause of your daughters ongoing suffering.i know from experience with my youngest just how very hard it is to deal with a very ill child.my heart goes out to you.hopefully if you can get her where she needs to be,they can find the reason for this condition.good luck and please keep me posted on how things go.Hang in there "mom'.FB
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Old 09-02-2006, 07:11 AM   #3
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Re: Help!! Daughter needs disgnosis

isn't it horrible when one of your children is ill? no matter how young or old they are. after spending 2 days in 2 different hospitals with every test under the sun run my daughter still didn't have a dx. at the time all dr.s were on strike trying to fight the malpractice insurance. the following week when her dr. was in he did blood and called her the very next night with a dx of lyme disease. why the hospitals didn't find it is beyond me because whe had just contracted it and her lyme levels were high. did they even check for it? i don't know. her symptoms were high fever, muscle and joint pain everywhere. we thought maybe toxic shock but it was outruled as was everything else. thank God her dr. found it when he did. keep going until you find a dr. that can and will work to find a dx. best of luck.

 
Old 09-02-2006, 12:29 PM   #4
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Re: Help!! Daughter needs disgnosis

Hi abellatrix318. I am sorry your daughter is so sick, I know it is heartbreaking. How old is she? It is terrible when doctors cannot find out what is wrong, they often blame the patient!

I suggest that you have your daughter tested for tick-borne illnesses. Lyme disease is a multi-system bacterial infection caused from the bite of an infected tick. Many people are bitten by ticks without knowing it. They are tiny and inject a numbing agent so you cannot feel them on you.

Lyme disease is the second fastest growing infectious disease in the US after AIDS and the number one vector borne disease in the US. Besides Lyme, ticks can transmit several co-infections including Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplamsa. Many people who have Lyme are co-infected. Ehrlichiosis is an infection that invades and infects the white blood cells. Some people who have it have affected blood counts.

It can be difficult to diagnose Lyme disease. No test is completely reliable, and results can vary by lab. It is important to be tested by a Lyme reputable lab such as IgeneX in Palo Alto, CA. They use more sensitive testing.

It is important to see a knowledgeable doctor. The majority of doctors do not undersand tick-borne illnesses and grossly under-treat them. There are not many knowledgeable doctors. If you would like a recommendation, let me know.

Do not give up, you will find out what is wrong. Remember it is a doctor's job to help you. I hope you get answers soon.

 
Old 09-02-2006, 12:31 PM   #5
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Re: Help!! Daughter needs disgnosis

Hi ICC. I saw your reply after I posted mine.

How is your daughter doing? I hope she got aggressive treatment. Besides Lyme, ticks can transmit several co-infections. It is estimated that 60% of people who have Lyme are co-infected. Do you know if she was tested for all the co-infections?

 
Old 09-02-2006, 03:47 PM   #6
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Re: Help!! Daughter needs disgnosis

hi ticker----no i don't. can you name some of the co-infections? this way i know what to look out for in the way of symptoms. and yes she was treated very aggressivelyfor months. dr. said she was lucky they found it right when she was infected and she didn't have it for a time with no treatment.

Last edited by ICC; 09-02-2006 at 03:48 PM.

 
Old 09-02-2006, 04:31 PM   #7
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Re: Help!! Daughter needs disgnosis

Hi ICC. I am glad she was treated right away. Getting the proper treatment early in the infection may reduce the chance of long-term complications. When did she stop treatment?

The co-infections are Babesiosis, Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. Babesiosis is caused by a protozoa that attacks the red blood cells, and it it similar to malaria. Some of its hallmark symptoms are heart palpitations, night sweats, severe headache, shortness of breath. The Ehrlichiosis co-infections invade and infect the white blood cells. Bartonella is also called cat-scratch fever and is now known to be transmitted by ticks. I believe that Mycoplasma is similar to walking pneumonia.

 
Old 09-03-2006, 09:28 AM   #8
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Re: Help!! Daughter needs disgnosis

thanks ticker-----she doesn't seem to have any symptoms of anything right now. what i've noticed since she was dx is that periodically she gets really tired. doesn't have the stamina she used to. she's 27 so still young and raring to go but sometimes she has trouble getting out of bed in the morning. not sure when treatment stopped. but i know she was on 2 different antibiotics for about 4 months. she has been tested since and everything seems to be fine. it's time for her to have her yearly check-up and i asked her to please change to my dr who is in the same practice with hers but a little more cautious without being an alarmist. thanks for the info.

 
Old 09-03-2006, 02:45 PM   #9
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Re: Help!! Daughter needs disgnosis

This really sounds like Lyme diesease. Find a doc who speciliazes in this and run the approriate test for her..

 
Old 09-03-2006, 06:45 PM   #10
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Re: Help!! Daughter needs disgnosis

Hi ICC. Do you know how long your daughter was sick before she was diagnosed? Long-term treatment is not unusual for tick-borne illnesses.

I would also suggest that she have her thyroid tested. Have her ask to have the Free T3, Free T4 (besides the T3, T4) and thyroid antibody tests done. These tests are not usually done but are necessary for a comprehensive view. A thyroid disorder can also cause fatigue like you describe.

Some people who have Lyme also have a thyroid disorder. Sometimes this disorder is Hashimoto's Thyroiditis. If you want to post her results, I will help you interpret them if I can or you can post them on the thyroid board here. The people there are great. Realize that even if the results are in the normal range, they may not be optimal for her.

You are such a good mom Your daughter is lucky to have you looking out for her.

 
Old 09-04-2006, 03:51 AM   #11
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Re: Help!! Daughter needs disgnosis

ticker---funny you mention the thyroid. accidentally they found mine to be enlarged with a cold nodule. not seeing the endo until sept 11th. made the appt on june 26th. isn't that ridiculous? now to my daughter. before she had lyme disease all of a suddden she lost 10 pounds in a week. was shaky and just really out of sorts. took her to PCP, this was maybe 5 years ago, he did blood, said she was really in the hyper range and gave her meds. the nest morning she woke up in a bed full of blood. got a period from hell becasue the dosage was too high. he then sent her to an endo. had a nuclear scan done but i think she was also given a treatment of some sort and told she would probably end up hypo one day. i think that day is here. she is gaining weight , not alot, but considering she works out and eats good there is no reason. the endo gave her something and told her to wrap all of her personal items seperately, flush the toilte twice and stay away from children for a few days. i had a nuclear scan and was told none of this whish is why i think they treated her. i have been after her for 2 weeks to call the endo, get her records and make an appt with the pcp for a complete physical. my blood tests are all normal even though the nuclear scan says i am hypo. this thyroid thing is al very confusing and dificult to even get treatment for.

 
Old 09-04-2006, 06:49 AM   #12
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Re: Help!! Daughter needs disgnosis

Hi ICC. It is ridiculous to wait so long! Make sure you get all those tests done.

For years I knew I had a thyroid problem. The tests were always in the normal range but I had all the symptoms. Finally when my doctor ran the antibody tests, they were hugely elevated and I was diagnosed with Hashimoto's Thyroiditis.

I agree that your daughter should get her records and determine what has been done.

It could be you are both hypothyroid. It can run in families. Even if results are in the normal range, they may not be optimal.

I hope you can both get answers soon!

 
Old 09-05-2006, 05:40 AM   #13
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Re: Help!! Daughter needs disgnosis

you and me both ticker. i have waited 2 1/2 mos to see an endo. pcp won't treat it since my levels are normal but the nuclear scan says otherwise. i don't know if the endo will want to do a FNA of the cold nodule , treat me, take it out or just watch it. it's very frustrating. my daughter or the other hand since she's already been treated for hyper, just the one time, i think she has turned hypo. my mother and several aunts were also hypo so i'm sure about this. thanks for always giving me feedback.

 
Old 09-05-2006, 06:37 AM   #14
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Re: Help!! Daughter needs disgnosis

Hi ICC. If you do not get satisfactory answers from this doctor, don't give up. It can be hard to find the right doctor, but keep trying! I am on my fifth one, and so far he really seems to care.

Learn as much as you can, it will help.

 
Old 09-05-2006, 07:43 AM   #15
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Re: Help!! Daughter needs disgnosis

ticker i noticed that about endos. called 10 before i could even get an appt this year. the one i'm seeing offered to read all test results if i fx them to her which i did. they called the next day and made me an appt. my ENT and rheumi have both said she's one of the best so i hope to be in good hands. if not i will keep trying. to much going on in my body not to. sick of feeling like crap

 
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