Hi,
I am new here and very worried. My daughter has been sick for almost a year now. No one will really listen. I called her pediatrician this morning and faxed over the below medical summary of the past year (bc if you read into the below you will see they are not really reading into her chart very thoroughly). As of now my D has had a relapse of whatever she has and has been in severe abdominal pain for the last 3 weeks along w/ fatigue so bad that she pretty much collapses into sleep every night after school. I think the Dr’s think, well she is going to school every day so it can’t be that bad but she has to go to school bc in the absence of a Dr. note she cannot miss more than 3 days in a row.
In the last 3 weeks she has seen an ER Doc (Said burst ovarian cyst), OB GYN twice (refuted the burst cyst idea) and I have begged her pediatrician to see her only to have them say go to the OB GYN (the OB Gyn said it is a pediatrician’s problem and to see the ped) and a gastroenterologist.
It wasn’t until yesterday when a friend said maybe my D has Lyme Disease that I really looked into it and said, OMG this is her. Fast forward to today, Dr was faxed the below history at 8am this morning and after 2 phone calls still has not contacted me (I called and asked for a blood test for Lyme) and the local University Hospital ID unit will not take her w/out a referral. So I am treading water waiting for everyone to help my daughter. I don’t know what to do….please any advice you have would be so welcome right now.
Girl Age 17 – Medical / Personal History 9/1/2006 – present
Early October 2006 – School Trip to Outdoor Obstacle Course in woods near Maple Ridge Wind Farm Lowville, NY
Mid/Late October 2006 – Circular rash appears around belly button
Late October/Early November 2006 – Complains of ear pain, taken to Dr and given antibiotics
Dec 1st -5th 2006 – At a State Music Conference in Rochester falls ill w/ severe coughing, chest congestion, fatigue, sore muscles. Upon return home visits Dr and is diagnosed w/ an upper respiratory infection
Dec. 20th (appr) 2006 – Falls ill again w/ flu like symptoms this time: extreme fatigue, sore muscles, chest congestion and pain, sore throat, low fever, Called Dr and more antibiotics were prescribed
Late January 2007 – Flu like symptoms start to recur: extreme fatigue (sleeping for whole days at a time), night sweats, fever, stiff neck, swollen glands, left side mid-abdominal pain, headache, light sensitivity, sore throat, tingling in fingertips
Several trips to the Dr and the ER ruled out pancreatitis and initial tests for mono were inconclusive. No real diagnosis other than viral infection at this point.
After 2-3 weeks of the above symptoms and the worsening of her condition we decided to see a new Dr, a pediatrician. After examining her and listening to her symptoms and looking at her blood test results (I had asked for more specific mono tests to be given) gave a diagnosis of mono and referred her to OB/GYN for menstrual irregularities and to gastroenterologist for consistent abdominal pain.
At this point rash around belly button had recurred and NP diagnosed as contact dermatitis.
Spent about a month out of school and gym activities.
Spring 07 – Consulted OB/GYN and was diagnosed w/ large (6 cm) ovarian cyst and placed on birth control for aforementioned menstrual irregularities
July 5,2007 – Woke up w/ swollen, gooey eyes. Dr confirmed conjunctivitis, antibiotics cleared after several days. Finished all medicine as directed
August 2007 – Recurrance of conjunctivitis – Had a refill on medicine so did not see Dr, refrained from wearing contacts and finished all medicines as directed
During period of April 07 – present fatigue, muscle soreness, back pain, lower abdominal pain (slight and sporadic), stiff neck, sleep issues (constant want of sleeping, unable to sleep at night), headaches, continued although at a lesser level.
September 2007 – Belly button rash recurs, do not go to Dr due to belief it is contact dermatitis
Late September 2007 – Severe lower abdominal pain, nausea, and extreme fatigue, assuming it is due to new ovarian cyst rupture but tests show nothing. Both OB/GYN and Ped believe it is gastrointestinal but symptoms do worsen. Loss of appetite and unexplained weight gain are also occurring at this time. Headaches also occurring within this time period as well as stiff neck. Complains that at times feels like she cannot catch her breath. Also confesses to mental confusion, depression, and panic attacks. Sleep disturbances continue and would come home from work/school and immediately lie down to sleep for several hours. Missed menstrual also during this time as well as mood swings (attributed to BC pills and cysts).
I can't imagine how worried you are for your daughter. Ticker and some of the experts will be along shortly to help you. One thing that stands out to me is that she gets worse shortly after being prescribed antibiotics. I'm assuming she felt better when she was taking them and then like a few weeks or a month later she gets sick again with viral type problems. It sounds like she could have Lyme. Many if not all of her symptoms could be because of Lyme including the strange contact dermititis and the ovarian cysts. Did her Mono test come back as postitive? Her body is certainly fighting something. Ticker can explain things much better but she certainly needs to be tested for Lyme if for no other reason then to eliminate it as a possibility. I hope she starts feeling better very soon.
Thanks Grace. Her mono tests came back positive or negative depending on which Dr you ask. After initial tests in the ER came back negative I asked her GP to run more specific tests (EBV Titer). When those came back he gave me some confusing gobbly **** about it looking like she had had a case of mono in the past. No real answer there about why she still felt bad so took her to a new Dr, pediatrician, and he said yes the tests results read positive for mono (same results GP looked at). At the time I was satisfied just to have a diagnosis and Dr note for her to stay home from school. Now I am wondering what might have really been going on.
Still waiting for Dr to call...last week begged them to see her as she had spent many days doubled over in pain and exhaustion like I have never seen. OB/GYN had prescribed Naprosyn (did nothing for her pain) and ER prescribed Darvoset (helped a little) but that was all. None of the Dr's suggested blood work (not even the ER) but did urinalysis (neg for UTI) and sonos (inconclusive for burst cyst).
A few things that stood out to me while researching this: she had tingling of her hands during the Feb mono episode but no Dr could explain that as it is not a usual symptom of mono. Also the 2 episodes of conjunctivitis this summer were another symptom of Lyme I would never have guessed but don't you know she had that too.
Last night she confessed to me a lot of mental confusion and panic attacks. I think she does not want to worry me so she kept this from me (and probably thinks she is going crazy).
I feel so helpless right now. If I don't get any action from the Dr by tomorrow night I am taking her to the ER at the University Hospital in Syracuse NY. If anyone has any suggestions please post.
Make a copy of what you posted here with the timeline of her symptoms and diagnosis. Let the docs know all of her symptoms even if they seem so unrelated to give a complete picture of what is happening. Make sure you tell her docs that she did have a circular rash after being outside. If possible take pictures of the "contact dermititis" just in case they fade away you'll have an example of what they looked like. At the very least she needs a complete workup of what is going on with her. Insist on labwork. Ticker can help you locate a Lyme Literate Doctor if you choose to go that route.
I am very sorry your daughter is so sick. I know it is heartbreaking. What did her rash look like?
Below is a Lyme symptom list. You can have any combination of symptoms.
Unexplained fevers, sweats, chills, or flushing
Unexplained weight change--loss or gain
Fatigue, tiredness, poor stamina
Unexplained hair loss
Swollen glands
Sore throat
Testicular pain/pelvic pain
Unexplained menstrual irregularity
Unexplained milk production: breast pain
Irritable bladder or bladder dysfunction
Sexual dysfunction or loss of libido
Upset stomach
Change in bowel function-constipation, diarrhea
Chest pain or rib soreness
Shortness of breath, cough
Heart palpitations, pulse skips, heart block
Any history of a heart murmur or valve prolapse?
Joint pain or swelling
Stiffness of the joints, neck, or back
Muscle pain or cramps
Twitching of the face or other muscles
Headache
Neck creeks and cracks, neck stiffness, neck pain
Tingling, numbness, burning or stabbing sensations, shooting pains
Facial paralysis (Bell's Palsy)
Eyes/Vision: double, blurry, increased floaters, light sensitivity
Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity
lncreased motion sickness, vertigo, poor balance
Lightheadedness, wooziness
Tremor
Confusion, difficulty in thinking
Difficulty with concentration, reading
Forgetfulness, poor short term memory
Disorientation: getting lost, going to wrong places
Difficulty with speech or writing
Mood swings, irritability, depression
Disturbed sleep-too much, too little, early awakening
Exaggerated symptoms or worse hangover from alcohol
When Lyme disease is possible, it is very important to see a kowledgeable doctor. Many doctors do not understand Lyme and treat with outdated protocols. No test is completely reliable, and results can vary by lab.
Besides Lyme, ticks can also transmit several co-infections including Babesiosis, two types of Ehrlichiosis (HME & HGE), Bartonella, and Mycoplasma. It is estimated that 60% of people who have Lyme are co-infected. 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.
I am not a doctor, but your daughter's symptoms sound like they could be from Lyme and Babesiosis to me. Babesiosis is similar to malaria. Females who have Lyme often have an increase in symptoms around or during their cycles.
If you need a doctor recommendation, let us know. There are some excellent ones in NY. Since she is 17, she may be able to see a doctor who treats adults. Otherwise, the only Lyme pediatrician in the country is Dr. Charles Ray Jones in New Haven, CT. He sees patients from all over, and he has helped many children. You may want to call his office for advice. From all I hear, he and his staff are wonderful.
It is also important to learn as much as possible. 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. You are a great mom, and your daughter is so lucky to have your support.
take her straight to an LLMD. its been my experience you are only going to get the runaround from regular doctors.
the respiratory symptoms appear common in children. thats what my son had, atypical asthma and respiratory infections, that is why I never suspected lyme in him.
Thanks everyone. The Ped never called me back last night. Did I tell you that when I had talked to the nurse at the Ped's office yesterday morning I told her about the rash and she said "I have never heard of a rash around the belly button being a symptom of Lyme Disease"!!! My D's rash looks/looked very similar to the belly button rash on the Lyme Disease Org sites. I thusly stated this to the nurse but I think when Dr's offices hear you have been on the internet they start to think you are dramatizing. I did fax the above posted medical history to the office yesterday morning and as of 3pm he still hadn't looked at it
During the day yesterday I had talked to the Peds ID unit at University Hospital in Syracuse NY. Their nurse said they cannot take my D w/o a referral from a family Dr but she advised me that after talking to me I should demand a test for Lyme. I had done that first thing yesterday but as I said, they did not call me back even though I harassed the office several times during the day.
My question is: what if her test comes back negative (she has been on antibiotics several times this last year)? Then ofc, the Peds office will not give me the infectious diseases referral and I am sure they will not send anything to Igenex for me. Will Igenex be compatible w/ insurance? I hate to say this but money is an issue here. I read a post on another thread that the Igenex bloodwork costs $450 and that is not so bad but for various reasons (really bad year for our family) it would be better if ins covered the workup.
Also, it is doable for me to go to Steven Bock or Richard Horowitz (they are both about 3 hours from me) but won't they also require a referral?
Hi Miller205, sorry to hear about your daughter...from what I read it sure sounds like lyme. I wouldn't mess around with any of those doctors BUT get her straight to a Lyme Literate Medical Doctor. they will go on symptoms and not solely on test. No matter which lab you use Lyme test are just not accurate...Igenex is the best...but they even miss some..this is why you need to get her to a Doctor that specailizes in Lyme.
I wish you luck and hope you find answers for your daughter.
Hi miller205. Ticks sometimes attach in the belly button. This may be where your daughter was bitten; however, I believe the rash can appear anywhere not just where someone was bitten. If you have not done so, get a photo of her rash. It is important documentation. Place something near it, like a coin or ruler, before photographing to give it size definition.
There is no completely reliable test for Lyme, and results can vary by lab. It is my understanding that the ELISA or titer is the least reliable test and the one most doctors run first. IgeneX uses more sensitive testing and lists more bands on the Western Blot. They do not take insurance, but you can submit the bills to your company for reimbursement. Some pay better than others. You may want to ask ahead how much they would pay.
I have heard some not so good things about Dr. Bock. Dr. Horowitz comes very highly recommended. Most Lyme doctors no longer take insurance because insurance companies often do not reimburse them. Again, you may want to call your company to see what they would cover.
Hi miller,
If you call IgeneX they will send you a test kit with an order form and price list. What I did was order the test that cost $245. It included the Elisa screen, Western Blot IGG and IGM. For me that was a good place to start. Even if you get negative results the IGG and IGM can give lyme docs. lots of information according to the bands that show up.
The kit wil come with an order form. Any MD or DO can fill it out. If you tell your Ped. or family doctor you just want some piece of mind they should at least sign the order form. I go to the VA and the doc. who signed my order form was a ID. doc. who in no way thought I had lyme. I talked him into signing the form. I then filled out the part of the form I wanted to order. I ordered the $245 tests. I had to pay for everything out of pocket. I took the kit and order to a private lab and for $35 they drew the blood and spun, packed and I took to fed ex. The results were sent to the ID doc. who than passed them on to me.
Any half way compassionate doctor should AT LEAST sign the form. Once I got my IGeneX results I called a LLMD. You may want to do that sooner, some have long waits. To make an appointment with a lyme doctor you should not need a referral. Good luck mc
P.S.
I told my ID doc. at the VA I really wanted to see Western Blot results. Normally Western Blots are not run unless the Elisa screen is reactive. I told him I know of a lab in Ca. that will run a Western Blot even with a neg. Elisa screen. He was hesitant, but I already had the form with me and told him the only thing he had to do was sign it. And I really wanted to see the results for my own peace of mind.
Thanks, at around noon yesterday the Ped's office FINALLY called back and said ok we will order a test but want to wait and see if the GI spec she has an appt w/ on Monday concurs w/ this as she may want more Bloodwork. I lied and said I had to change the GI appt due to a conflict and they ok we can run today. Also they stated they wanted her to see a psychiatrist!! I said why and the nurse said bc I noted on the med history that I wrote that she suffers from some depression and panic attacks. I said, wouldn't you be depressed after being chronically sick for a year and no one will help you?
Then nurse continued to give me a number to call if she threatens anyone or herself.
Took her to the lab yesterday afternoon (had called the lab to find out how long Lyme Titer would take to come back, they said Lyme test would be run Sunday w/ results probably Monday) had the blood drawn and now we wait.
I am keeping the GI appt just in case she is more sympathetic and bc she is connected w/ the same hospital that the ID Dr's I spoke to are affiliated with so maybe I can get a referral from her.
In the even the Titer comes back negative I will get the kit for Igenex and get some Dr, somewhere to sign. And in the event she comes back w/ a positive reading I WILL NOT LET THE PED TREAT HER!!!! I will get her in w. the ID group that I have talked about and contact an LLMD as soon as humanly possible.
I cannot tell you how disappointing this whole experience has been from the beginning. I have never felt less faith in the medical community than I do now. My youngest D has to see a Ped Endocrinologist for Ideopathic Short Stature (she takes Humatrope injections) and he is a wonderful man who I considered calling on this. However, I was afraid he too would disappoint me and I couldn't take that. I cried all day yesterday and you should have seen the look of hurt on my D's face when I told her about the psychiatrist referral. She is not clinically depressed, she is exhausted and in pain. Why can't anyone see that? Oh, I know, bc they haven't physically looked at her lately!!
yes, definitely take her to the GI and the GYN to make sure there is not something else going on along with the lyme. but I would stay far away from the psychiatrist. doctors would rather have you on all sorts of dangerous antidepressants before antibiotics for some reason. 20% of our children in this country are on drugs for mental/psych illness. they wont stop until everyone is drugged up. if she is having emotional issues, its fine to talk t o a psychologist, but resist medications and insist her issues are due to physical illness.
Yes I know we should all be dancing a jig because we don't feel good.... Sides when bacteria (s) ...virus's get into the CNS ummmm excuse me but truly what good are antidepressants....
I hope you get her to a LLMD soon. That was one of my worst problems was having doctors tell me it was all in my head...Well now because of their flippin ignorance or not caring....IT IS!!
I am sorry you are having to go through this. Yet we are all learning not to rely on the medical field...Your daughter is a money maker to them...please get her to a LLMD as soon as you can...it will be worth your money and time.
Thank you. Everyone here is so supportive and great.
Roro, my D has been under the care of an OB/GYN since May and last saw that Dr this past Tuesday. The Dr actually told her (I was not in the room bc she was having a full exam) that she probably has a bowel disease!! This was after maintaining for weeks that her current symptoms are out of their scope of specializing.
Last night was going over the week's events w/ some mom's at my youngest D's ballet class and realized that also my D16 was sick in June w/ very sore throat and swollen glands. We were on our way to the Dr on a Sat morning (bc they can get her in right away for that ) when I received a phone call that my DH had been in an accident so we had to postpone. By the time he was released from the hospital the sore throat was gone but this is another thing to add to her history.
I am from Syracuse. Do not bother with any drs. here unless you want a pysch diagnosis. They are worthless here. I had a similar experience and was sent to countless specialists , including an ID dr. His answer (without any blood work or even touching me for that matter) was zoloft. I found it very hard to believe that after 42 years of happy and well that out of the blue I needed pysch drugs for my very real physical symptoms. I was finally diagnosed with lyme and chlamydia pneumonia, since mine started with a respiratory infection it all made sense. I have to travel out of state for treatment. This is all so sad.
Still waiting on the test results. Yesterday went to see the GI doctor in Syracuse and she basically looked at us like "why are you even here". The area where my D has pain in her abdomen at this point has no basis for a GI consult. The only thing in that area is the sigmoid colon and the GI Dr said that she shows no signs of inflammation or any bleeding and she wondered why the ped didn't check for that stuff first. Well, bc he was too busy passing her off to someone else.
I asked her about the Lyme and she gave me some BS about how everyone in our area has high Lyme Titers (what) and that my ped will know how to read the test but don't worry about the IGG levels bc they don't mean anything.
Ofc, she prescribed medicine for her "colon pain" but I think only bc she thought we should come away with something. No diagnosis ofc.
OMG!!!! Ped's office called back this morning and said Lyme Titer was negative. What now I said and they said Dr says to continue medicine that GI put her on yesterday (Nulev for IBS) and follow up w/ GI. I said GI didn't find anything. Asked for a referral to ID Group in Syracuse and was told they would have to call me back. Also stated to them that I know Lyme Titers are known to be inaccurate.
Just got a call back and nurse stated that the Ped said no referral will be given. Follow up as directed w/ GI Dr in a month and if not better with him in 2 months!!! I said "How would he like it if his daughter had to suffer w/ this for 2 MORE MONTHS!! You have called her abdominal pain 'chronic' but it is not in even remotely the same spot as last winter's pain. She gets so nauseous that even riding in the car is bad and is so fatigued and with back pain that she comes home from work or school and collapses for 3 hours!! Would you want that to go on for another 2 months if it were your Dr?"
Nurse said she would relay my concerns to the Dr and call back but they wonder if I have gotten her to a psychiatrist. Now I am furious. I say "no, you just told me about that on Fri afternoon, yesterday was Columbus Day and she was in the GI's office 2 hours away all day. When would I have time for that?" The Nurse says "so you haven't taken her to a counselor?" I said "When I told my D that you said that she about died. She was so hurt because she feels so sick and now you want her to think she is crazy." Ofc, Nurse then said she will relay my concerns to the Dr and call back.
When she calls back she will be informed that I want my D's records along w/ those of my son waiting at the desk to be picked up at 4 pm today. I cannot deal with such treatment anymore.
FYI, I left a message at the office of an LLMD in NY state. I tried Dr Horowitz's number but must have written it down wrong. The Dr office said it would take up to 7 days to get back to me.
Now what? It is pretty obvious that this Dr will never sign for an order to get any testing done to submit to Igenex.
Miller205,
Your situation really s****. I totally sympathize with you. I know that desperate feeling. Since it's your child it's even worse. I wonder what the counceling and psychiatrist professionals think. If I were them I would be SOOOOOO ******. It seems they are being dumped all these people with real medical problems. I wonder if they keep track of the numbers?
Did you order the IgeneX test kit yet? That would be my first step. Once it comes I would BEG a doc. to sign. It should really be no skin off there back. And if it makes you feel better why not. Once you get the results the doc can wash their hands of it. But at least your have some idea. Sorry about your plight. mc
Sides when bacteria (s) ...virus's get into the CNS ummmm excuse me but truly what good are antidepressants....
) when I received a phone call that my DH had been in an accident so we had to postpone. By the time he was released from the hospital the sore throat was gone but this is another thing to add to her history.
