Re: Need help again

[Guest guest]

,

Im sorry that you arent feeling well. I know the feeling lately myself. I know how it is with the drs not doing thorough blood work too and brushing it off as nothing if it cant be found in common blood work. Im hoping one day that hospitals and all will be more familiar with mito and know the blood work to do. i hope you can get ahold of dr cohen soon also. im sorry the bextra is causing you problems also- its hard to find meds w/o side effects. i just hope you start feeling better and they will look more into it soon. youre in my thoughts.

take care,

adrienne

[Guest guest]

I would make sure they did lactic acid levels, without a tourniquet and also

cpk levels.

LILQT4U1984@... wrote:

> Hi,

>

> I need some help from all you experts. I have been running a fever

> for over a week now and my muscle pain has much more severe. We have

> been calling the doc's office and doing everything they suggest but

> nothing was helping. My mom took me in yesterday afternoon and I saw

> the nurse practitoner. She was very good and took everything down and

> said she would go and talk to my doc. I was running a fever while I was

> there and my face was the color of ketchup when normally I am stark

> white pale. The NP kept saying how sick I looked and that my pulse was

> fast and that told her I was in alot of pain. Well she talked to the

> doc. and he wanted labs done on me asap. I went straight to the lab and

> they were to call this morning. Some other nurse called and said that

> all my labs were within normal range and that we were to just treat the

> symptoms. We don't know how! Something is wrong and they have just

> sorta dropped me again because nothing showed up in the labs. I have

> just started taking Bextra for the corotid artery prob. that is causing

> the sparking ear pain. I would think that should be helping or least

> keep the temp down. My doc. is wanting to keep a close watch on my

> liver as Bextra can cause liver probs. In the past my liver function

> has been fine. So what I was wanting to know is what type tests should

> you have done when you have mito and get sick? I see rather often on

> here about children going to the ER ,etc and they do these metabolic

> type tests...Dr. Cohen is still out of his office so we dont have him to

> ask. All my doc. did was the classic blood tests...CBC, SMAC 12 and Sed

> Rate. I thought I had remembered that when you are sick with something

> that your levels concerning mito things could change. I hope this is

> making sense...I don't know what to do the pain is so very bad. Thanks

> for reading and responding. You all are so helpful to me!

> Medical advice, information, opinions, data and statements contained

> herein are not necessarily those of the list moderators. The author of

> this e mail is entirely responsible for its content. List members are

> reminded of their responsibility to evaluate the content of the postings

> and consult with their physicians regarding changes in their own treatment.

>

>

[Guest guest]

mentioned the Lactic Acid and CPK. They should be checking you for dehydration. Your symptoms could be an autonomic problem, but everything else should be ruled out.

Dr. Cohen will be back next Tuesday, the 14th.

In a paper written by Dr. Cohen on management of acute illness, he lists the following labs and the use of Gatorade.

Lactate, Pyruvate, Ammonia, electrolytes and urine analysis and BUN to check for dehydration. The paper also mentions Ibuprofen for fever, D5 or 10 for dehydration and IV Carnitor.

I hope this helps. I will keep you in my thoughts.

laurie

From: LILQT4U1984@...

Reply-To:

Date: Wed, 8 Jan 2003 14:48:18 EST

To: mito ,

Subject: Need help again

Hi,

I need some help from all you experts. I have been running a fever for over a week now and my muscle pain has much more severe. We have been calling the doc's office and doing everything they suggest but nothing was helping. My mom took me in yesterday afternoon and I saw the nurse practitoner. She was very good and took everything down and said she would go and talk to my doc. I was running a fever while I was there and my face was the color of ketchup when normally I am stark white pale. The NP kept saying how sick I looked and that my pulse was fast and that told her I was in alot of pain. Well she talked to the doc. and he wanted labs done on me asap. I went straight to the lab and they were to call this morning. Some other nurse called and said that all my labs were within normal range and that we were to just treat the symptoms. We don't know how! Something is wrong and they have just sorta dropped me again because nothing showed up in the labs. I have just started taking Bextra for the corotid artery prob. that is causing the sparking ear pain. I would think that should be helping or least keep the temp down. My doc. is wanting to keep a close watch on my liver as Bextra can cause liver probs. In the past my liver function has been fine. So what I was wanting to know is what type tests should you have done when you have mito and get sick? I see rather often on here about children going to the ER ,etc and they do these metabolic type tests...Dr. Cohen is still out of his office so we dont have him to ask. All my doc. did was the classic blood tests...CBC, SMAC 12 and Sed Rate. I thought I had remembered that when you are sick with something that your levels concerning mito things could change. I hope this is making sense...I don't know what to do the pain is so very bad. Thanks for reading and responding. You all are so helpful to me!

Medical advice, information, opinions, data and statements contained herein are not necessarily those of the list moderators. The author of this e mail is entirely responsible for its content. List members are reminded of their responsibility to evaluate the content of the postings and consult with their physicians regarding changes in their own treatment.