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[CEDmom]

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Sounds like she's had all the symptoms - except the bull's eye rash.. But they're saying they tested her for it - and the test was negative - so what else can we/she/they do?

I'd ask to have the test repeated. It's possible the lab made a mistake or that not enough of the of the lyme was in her blood stream at that point to test positive. My DH had Lyme several years ago and the blood wirk needed to be done a few times before they got a postive reading - he never got the rash either.

One other thing, while it's possible this in environmental I'd rather doubt it because your DGD isn't ill. Given her size she'd be more affected by something like that than an adult.

I hope you get to the bottom of this and that your DD is well very soon.

 

[Sheree Bobbins]

I'm sorry I can't help you search for a diagnosis. You and your daughter are in my prayers.

 

[BeNJeNWaFFLe]

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Sounds like she's had all the symptoms - except the bull's eye rash.. But they're saying they tested her for it - and the test was negative - so what else can we/she/they do?

You don't neccessarily need a bull's eye rash to have Lyme disease. The test could also have a false negative. I had a huge bulls eye rash when I was 10. My parents took me to the ER for the test. (I had a friend diagnosed 2 years earlier so my parents were very worried.) It came back negative and the hospital refused me treatment. It ended up being that the negative was false because we caught it so early. I went to a specialist who diagnosed me correctly and treated me.

If you feel it is Lyme disease, find a specialist in your area. I wish I could tell you more about my symptoms and treatment but I was young. All I remember is a lot of antibiotics, which caused me flu like symptoms and blood poisoning, which lead to more antibiotics.

Just keep yourself healthy. NY has the stomach bug going around. It's pretty nasty too.

 

[Feralpeg]

Haven't you guys been remodeling a house? Could she have gotten into something? Bat, bird or mouse droppings in the attic? I had a friend who got extremely sick while remodeling a house. It turned out there were bat droppings in the attic. She developed encephalitis.

I had a blood patch after a spinal tap about five years ago. I was fine as long as I lay flat. As soon as I sat up, I got the worst headache. The patch is very quick. I'm amazed they are making her wait.

 

[C.Ann]

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[Soylent_Indigo]

I like to think the *vast* majority of medical professionals are at the very least slightly more qualified than your average hairdresser.

C.Ann, I hope your daughter is out of the hospital soon - stays in the hospital always freak me out because of the rampant staph infections

I went to the ER THREE times in 4 days with excruciating pain - the hospital kept telling me there was nothing wrong with me and asked my father and sister if I was a psych patient as I was obviously imagining it all. My HAIRDRESSER correctly diagnosed it as a gallbladder problem. I had hideous complications which lasted for months because of the delay and errors of the so-called professionals.

I absolutely agree with this. She NEEDS you.

I hope they find out soon what the problems are.

 

[arminnie]

I like to think the *vast* majority of medical professionals are at the very least slightly more qualified than your average hairdresser.

I know that the vast majority are way more qualified - I just had the bad luck to get the really awful ones. Going to the ER at the wrong hospital can be disastrous.

I have dinner with the state medical board (as the guest of a friend who is a member) once a quarter. We have a great medical school (thanks, Waltons) here in the state and some top notch medical personnel.

I just made the mistake of going to a hospital that was great when I was growing up here 40 years ago, but is now truly the bottom feeder of the area.

 

[4nana]

C.Ann, my heart breaks for your daughter's suffering, as your family watches and wonders, while not being able to help her. I realize some her ailments may be more complex requiring more testing and time. But, I cannot imagine waiting since Friday for that dang patch, when they know what's wrong!?!? I am with you and would be livid...WTH kind of medical care is this?? Has DH taken it to the top for some answers? No wonder you have a headache dear.

Fortunately I am blessed to live within an hour of some of the best hospitals in the nation such as Hopkins, Georgetown, etc., whose excellent doctors and staff give quality care. So to me, this is inexcusable and unacceptable.

One thought, has anyone contacted the place of employment when DD works to see if anyone else has same symptoms? God bless her and continued prayers that she'll soon be diagnosed and receive the proper treatment to begin her road of recovery. Godspeed ^i^

 

[Sherri]

C.Ann, give us an update today. I hope dd received her bloodpatch.
It seems crazy with all of the medical advance that they are still so baffled. Surely, they must have seen something similar before.
I missed the original thread, so you may have said, but I was wondering if they did a CT.Scan and an MRI, one or both. If so did anything come of that?
I hope she gets better soon.

 

[CJMickeyMouse]

DS went through this... they narrowed it down to Lyme's Disease or Guillain Barre. He ended up with Guillain Barre. Symptoms can present differently and progress to different levels at different speeds. His blood pressure elevated suddenly.... stayed high for 10-12 days and then dropped back to normal suddenly.

Is she having any neuro problems... tingling or numbness, heavy feeling.... it does not sound like GBS to me but that might be another thing to check for. They would do a spinal tap and nerve conduction tests if they suspect GBS.

Good luck and I hope they find her problem soon!

 

[C.Ann]

I'll keep you posted as to what happens after she has the blood patch done..

 

[rie'smom]

You both are in my prayers.

 

[yeartolate]

If she was taking alot of pain meds for her headache, that could easily lower herblood pressure substantially. That paired up with dehydration could be a bad combo.

 

[Aidensmom]

I am so sorry this is still going on, you are both in my prayers.

C. Ann, if I were you, I'd ask the doctors what they believe is causing the low blood pressure. If they tell you they don't know or are vague, then I would ask them what they have tested for or what they think it could be. If they haven't looked into Addison's, then just "remind" them that there is a family member that has that.

 

[mickeyboat]

Wow C.Ann, I sure hope they can straighten this all out soon. I googled a little bit, and it sounds like the low blood pressure could be the cause of the headaches, so maybe if they can figure out what caused the low blood pressure, and treat it, all the symptoms will clear.

It also looks like there can be many causes of low blood pressure, from dehydration to heart/brain/kidney issues. I bet it will take a long time to rule everything out to figure out exactly what is causing the problems.

I also saw where some drugs taken for depression can be the cause of low blood pressure.

I know you must be sick with worry.

Denae

 

[C.Ann]

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[rie'smom]

C.Ann,is your daughter anemic? When I was,I had the most horrendous headaches. A couple of times,my friend had to drive me to the doctor's office and I could barely walk to the exam room. The headache was very similar to a migraine. I could hardly lift my head from the pillow the pain was so intense. It would make me extremely nauseated.

 

[lowie]

C.Ann, with all due respect, i'm not sure why there isn't someone from the family with her at all times, pressuring the hospital to do more. Or, ask the hospital if they have patient advocates.

if this hospital isn't doing anything all weekend to help her then ask for, no demand, a transfer to another facility.

when my dd was sick, and in the hospital for 3 months as an infant i was her advocate. i'd make sure that all of her meds were given on time, all of her tests were done when scheduled, her pain was managed as well as could be expected. and if a nurse screwed up (like the one that alomost gave her the wrong meds) they were no longer allowed access to my child.

my advice also would be to have her GP call the hospital on her behalf.
sometimes you have to shake things up.

if it were my daughter/spouse, i'd be at the hospital at 11 and nag them to do the patch every 10 minutes until noon arrived. if by noon she wasn't being wheeled to the room where it will be done, i'd ask for the charge nurse, and an administrator ASAP.

i also wonder why on earth they would try to get someone with a possible spinal headache up and walking???

to all of you, i sure hope she (and you) feel better soon

 

[UrsulasMyHero]

I just read this and you're in my prayers today... It certainly sounds scary for your daughter. I don't know her age, but I'd be scared and I'm 36.

 

[Ms Lucy]

Hi C.Ann

I don't know if these symptoms are similar to your daughters but 2 years ago I was suffering from the most dibilitating headaches, the pain was very severe and was making me vomit, it seemed to be just on one side of my head and I was so weak I was unable to stand. I was 28 at the time and was admitted to hospital as they thought I may have a suspected stroke, I had a CT and an MRI scan and hadn't suffered a stroke but the doctors didn't know what was wrong. I had so many tests and was feeling like a pin cushion but after five days, the doctors still had no answers.

I was referred to a private nuerologist who did another MRI scan and he said I was suffering from Chronic Paroxysmal Hemicrania www.headachedrugs.com/archives/cph.html it mainly occurs in young women from the ages of 25-35, they are not sure exactly what causes it, possibly a virus? The headaches were like pain I have never ever suffered before but they did go after 2 months. It is quite rare but perhaps it's worth asking the doctors if it's a possiblilty that your daughter is suffering from it.

My neurologist said most doctors don't know about the condition so it isn't something that they would test for.

I really hope they find out what it is and your daughter gets better soon .