posted
I'm so glad I found this board! I posted a topic on the seeking a doctor forum,and thought I would give a history of what my daughter has been going through for way too long.I'm sorry if this is long, I've been looking for answers and not finding any. When my daughter was 3 yrs. old (she's 17 now), I noticed a tick behind her ear after giving her a bath from playing outside. I removed it and didn't think much more about it, thinking it couldn't have been attached for very long. Fourteen days later she broke out in HUGE welts from chest down, arms/legs were covered. These looked like large bee stings, she was very weak, high fever, knees extremely swollen. She couldn't lift her head when lying down. As she was fine the day before, I was very scared, took her to urgent care and was told she just had an allergic reaction to something,and if the swelling on her knees didn't go down in 24 hrs, bring her back and they would give her steriod shots. I told hime about the tick bite,and he actually laughed and said, no it couldn't be that, she would have had a reaction within two weeks. Well, I said isn't 14 days 2 weeks?! I was dismissed, we went home and she did seem to get better. Fast forward a few years, some behavioral problems, anxiety, stress,(these could all be very extreme at times), fainting,which we were told by docs she just had a little attitude and would faint when upset (like a southern belle, what?!)Problems continued, suffered in school from emotional and physical stress. This is so sad to me as she started out in the gifted program,and has a high IQ, I could not understand what was happening. She tested positive for mono 3 yrs. ago, although symptoms were not extreme. She had the exhaustion, swollen spleen. I'm leaving alot out over the years,because this is so long. Six months ago, she had extremely rapid heart rate. Went to emergency room, heart rate over 200. All tests came back fine. We were told she had Panic disorder. I have no doubt she has anxiety/panic due to all she's been through in her life, but I know there is more to it. Several more trips to ER, rapid pulse, low or normal blood pressure, shaking, cold, intolerance to heat. I have to wash her hair for her, she is so exhausted she can't do small everyday tasks.We can't get any answers. This has become more severe in past 5 months. She sleeps alot, feels foggy-headed,weak,and the fast heart rate makes her have panic attacks which make it go even higher.And she keeps losing weight,she is aware of this and tries to eat more but doesn't help. I feel she is wasting away. We have seen therapists, MD's, cardiologist,endocrinologist.She recently tested positive for EBV,but no surpise since she had mono. We are waiting for a "chronic lyme disease" test result,but the lab made a mistake and performed the test on the wrong person,so we went back yesterday to start over. They actually told us at the hospital, they have never performed that test before and they had to build it into the system just for my daughter so they made a mistake.Have to wait another 10 days for results,although I'm not sure if I can trust the results after the mix-up. This is getting almost too much to hande, for her and our family. Her life has stopped, waiting for some kind of results and help. She is taking celexa, xanax for panic/anxiety. Was prescribed beta blocker but hasn't taken it yet as her blood pressure is already pretty low. She has a cortisol test in the morning to test for possible Addison's disease. After reading this board I'm finding alot of similarities to what she is going through. I am half way hoping the lyme test is positive so we can get on with treatment, but I don't really want her to have it either, so frustrating. Thanks for listening!
Posts: 2 | From Missouri | Registered: Mar 2010
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------------------------------- I'm so glad I found this board! I posted a topic on the seeking a doctor forum,and thought I would give a history of what my daughter has been going through for way too long.I'm sorry if this is long, I've been looking for answers and not finding any.
When my daughter was 3 yrs. old (she's 17 now), I noticed a tick behind her ear after giving her a bath from playing outside. I removed it and didn't think much more about it, thinking it couldn't have been attached for very long.
Fourteen days later she broke out in HUGE welts from chest down, arms/legs were covered. These looked like large bee stings, she was very weak, high fever, knees extremely swollen. She couldn't lift her head when lying down.
As she was fine the day before, I was very scared, took her to urgent care and was told she just had an allergic reaction to something,and if the swelling on her knees didn't go down in 24 hrs, bring her back and they would give her steriod shots.
I told hime about the tick bite,and he actually laughed and said, no it couldn't be that, she would have had a reaction within two weeks. Well, I said isn't 14 days 2 weeks?! I was dismissed, we went home and she did seem to get better.
Fast forward a few years, some behavioral problems, anxiety, stress,(these could all be very extreme at times), fainting,which we were told by docs she just had a little attitude and would faint when upset (like a southern belle, what?!)Problems continued, suffered in school from emotional and physical stress.
This is so sad to me as she started out in the gifted program,and has a high IQ, I could not understand what was happening.
She tested positive for mono 3 yrs. ago, although symptoms were not extreme. She had the exhaustion, swollen spleen. I'm leaving alot out over the years,because this is so long.
Six months ago, she had extremely rapid heart rate. Went to emergency room, heart rate over 200. All tests came back fine. We were told she had Panic disorder. I have no doubt she has anxiety/panic due to all she's been through in her life, but I know there is more to it.
Several more trips to ER, rapid pulse, low or normal blood pressure, shaking, cold, intolerance to heat. I have to wash her hair for her, she is so exhausted she can't do small everyday tasks.We can't get any answers. This has become more severe in past 5 months. She sleeps alot, feels foggy-headed,weak,and the fast heart rate makes her have panic attacks which make it go even higher.
And she keeps losing weight,she is aware of this and tries to eat more but doesn't help. I feel she is wasting away. We have seen therapists, MD's, cardiologist,endocrinologist.
She recently tested positive for EBV,but no surpise since she had mono.
We are waiting for a "chronic lyme disease" test result,but the lab made a mistake and performed the test on the wrong person,so we went back yesterday to start over. They actually told us at the hospital, they have never performed that test before and they had to build it into the system just for my daughter so they made a mistake.Have to wait another 10 days for results,although I'm not sure if I can trust the results after the mix-up.
This is getting almost too much to hande, for her and our family. Her life has stopped, waiting for some kind of results and help.
She is taking celexa, xanax for panic/anxiety. Was prescribed beta blocker but hasn't taken it yet as her blood pressure is already pretty low.
She has a cortisol test in the morning to test for possible Addison's disease. After reading this board I'm finding alot of similarities to what she is going through. I am half way hoping the lyme test is positive so we can get on with treatment, but I don't really want her to have it either, so frustrating. Thanks for listening! -------------------------------------------------------------------------------- Posts: 2 | From Missouri | Registered: Mar 2010 | IP: Logged |
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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Glad you found the site, but sorry your daughter is sick.
In the future it is better if you write shorter paragraphs as many people here have difficulty reading large blocks of print.
The think you need to be aware of is that ticks can carry many different diseases. Lyme disease is one of the most common but many people have 2 or 3 or more different tick-borne infections. There is some overlap in symptoms and also some overlap in meds, but there are a few symptoms and a few meds that are specific for each infection.
I agree -- the hospital obviously does not know what they are doing.
And if a person has been sick many years the tests may have false negative results -- that is why LLMD's diagnose clinically and not just on test results.
It definitely sounds like there could be an underlying infectious disease at work that has not been diagnosed and treated at this point.
As for the EBV -- that infection could be still active -- sometimes those type of viruses present as an accute illness and may remain as a chronic condition if treatment is not adequate or if the immune system gets depressed by something else.
Glad you posted in seeking a doc.
If you have the test results for the EBV please post them so others can comment on that issue.
Does her routine bloodwork show anything abnormal -- liver enzymes or white or red blood count etc?
If you have not done this yet -- now is the time to put together a file of all past bloodwork and test results. You can get records from the hospital and docs office by signing HIPPA release forms. They may charge a small fee for copies.
Others will be along with more comments.
Good luck.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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timaca
Frequent Contributor (1K+ posts)
Member # 6911
It is possible to have more than one pathogen causing an issue...so check out her antibody titers to EBV, then also look for other problems too.
Best, Timaca
Posts: 2872 | From above 7,000 ft in a pine forest | Registered: Feb 2005
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
It would not matter to me whether she tested postive or not!!!
I would get her to the best LLMD I could find asap.
I know this is very scary, and I don't want to scare you worse-but some of the worst have been the ones that have Mono in the histories.
So for her I would want someone who has treated those before worse symptoms appear. Such as dystonia and RSD.
It is common for the worst patients to have multiple infections and I believe those are the virus'.
Prayers for a easy road, but if she has had it this long it will be a long one but you can get there! She can get her life back with specialized treatment just for her and what all she has been infected with.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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ping
Frequent Contributor (1K+ posts)
Member # 6974
posted
Hi alteredposh - Yes, it does alter everyone's lives and sorry to hear this sort of saga once again.
Please, by all means, get your daughter to a Lyme Literate MD, as suggested on this site and get her treated. Be aware that treatment could take many months to years, so gird your loins. Sounds like your girl has already lost much of her childhood and teen years and you don't want her to lose another minute; please don't delay.
It's important to know, as another poster said, Lyme is not the only infection that's transmitted via direct tick bite and since her immune function has been compromised for some time, no doubt she has many additional infections (co-infections). EBV is just one of them. All must be treated. Try to find an LLMD who will treat for co-infecs, even if tests are negative. (Mine did and I'm eternally grateful for it.)
You and your family will have some work cut out for you in supporting a TBD patient. It's difficult for those who don't suffer from these diseases to understand one who is. Come back and give us updates often. We do pretty well with simple solutions to the every day issues and you will have plenty of those.
Best to you, your daughter and the rest of your family!
-------------------- ping "We are more than containers for Lyme" Posts: 1302 | From Back in TX again | Registered: Mar 2005
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posted
If it's not lyme, I will eat my hat as well. And I'm terribly sorry to hear of yet another story such as your daughter's.
Not sure if anyone has suggested the following: Watch the documentary film Under Our Skin--can be ordered from their site online Read Singleton's book The Lyme Disease Solution
I hope you're having the lyme test done through IgeneX but keep in mind, lyme is ultimately a clinical diagnosis. I also hope, as do others, that you get to the best LLMD in your general part of the country or travel where there is one.
This illness requires massive patient and/or caretaker participation. All the best. This is no easy fight.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
HI Alteredposh,
As everyone says you need to find an LLMD. That was my biggest mistake, I should have found one first before anything.
A virus can play an important role in someone with Lyme but pretty much everyone will test positive for EBV. I don't want to down play the importance of it. It may be a serious case of it.
I'll be thinking about you. It sure sounds like Lyme to me.
Maybe the doctor will prescribe 2 weeks of Doxycycline. If she has a reaction to that (feels worse at first) that could be an indication that it's Lyme.
Posts: 2232 | From USA | Registered: Aug 2009
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Carol in PA
Frequent Contributor (5K+ posts)
Member # 5338
posted
Where is alteredposh?
Carol
Posts: 6947 | From Lancaster, PA | Registered: Feb 2004
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posted
Sent a PM. Hopefully she will also get a message in her email and let us know how they are doing.
Posts: 515 | From In His Loving Care | Registered: Apr 2009
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posted
Hi, I am so sorry to hear that your daughter is so sick, and has been for a very long time. My daughter who is 16 was finally diagnosed with Lyme, Bartonella and Babesia 5 weeks ago. I cried with relief that finally, we knew what was wrong with her.
I had her tested for Lyme last Fall because I couldn't figure out why she was so sick. The diagnosis they come up with was post-viral fatigue.
My daughter has many of the same symptoms as yours. We ended up at a LLMD by a fluke! The LLMD also treats Chronic Fatigue and we went for that.
She tested for Lyme and co-infections through Igenix. My daughter came back positive for Lyme. She had 6 positive bands on her IgM and only 3 on her IgG. We started treatment 5 weeks ago.
The doctor says it's going to be a long road, and I am scared, but hopeful. The very best thing is to know what 'it' is and can now treat it.
Please get your daughter tested by a reputable LLMD and lab. I really didn't think that my daughter would have Lyme and was shocked. After all, we took her to her Dr to have the tick removed from her head when she was 8. They never mentioned that we should watch for any illness, rashes etc... If it's not Lyme, as other's have said, I'll eat my Hat!
Take care and healing energy to you and yours!
Posts: 333 | From Lyme Here Too | Registered: Mar 2010
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17hens
Frequent Contributor (1K+ posts)
Member # 23747
posted
Alteredposh,
Please listen to what these people are saying and make sure you take her to an LLMD!
Don't make the mistake I did 7 years ago and let a family doctor treat for 3 weeks and tell you she'll get better. Doesn't work like that!
We've all been down the road you're on and we are here to help and support. Let us know how things are going when you can.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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posted
Regarding the beta-blocker this may actually paradoxically raise her blood pressure if she has NMH - neurally mediated hypotension which could be related to wide swings in heart rate as well. A tilt table test is usually done to determine if someone has NMH.
Beachinit
-------------------- Ideas not advice. Posts: 448 | From Downeast Maine | Registered: Jul 2009
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daisyrlb
Frequent Contributor (1K+ posts)
Member # 15686
posted
alteredposh, So sorry your three-year old daughter was bit by that tick...and has suffered throughout her childhood. As a mom myself, my heart breaks for what you and your family have gone through.
Unfortunately, very unfortunately, too many doctors laugh, even mock...while people suffer with Lyme Disease and other co-infections.
There is help and hope, today, with some very fine Lyme-literate doctors.
I encourage you to check out all of your options. I am praying that God lead you and your precious daughter becomes well soon.
My husband started a thread back in January that is now three pages long. I encourage you to read his thread and the journey that Lyme has taken him on.
God speed, Rhonda
Posts: 2188 | From Oklahoma | Registered: May 2008
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Dekrator48
Frequent Contributor (5K+ posts)
Member # 18239
posted
alteredposh,
I agree that you should find a good LLMD immediately for your daughter.
When her Dr's tell you that she does not have lyme and her tests show that, ignore them.
It is only common sense that if she was bitten by a tick, had a rash afterwards and her health has steadily declined since that time , that there is a cause and effect there.
If any of us had listened to their PCP's etc, we wouldn't have been diagnosed and in treatment.
You must continue to come here, do as much reading and research as you can so you can advocate for her, and get to a good LLMD.
There are people here who have kids with lyme who can help support you.
I pray that you are guided to go in the right direction so your daughter has a chance of recovery.
You are a great Mom.
-------------------- The fibromyalgia I've had for 32 years was an undiagnosed Lyme symptom.
"For I know the plans I have for you", declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future". -Jeremiah 29:11 Posts: 6076 | From Pennsylvania, USA | Registered: Nov 2008
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