Re: Re: infections, especially oral

[Guest guest]

Dear Sunny-

Nice to meet you.

In regards to your question, I knew I had one abcess for quite awhile. I would

go to take antibiotics

for a time and it would nearly clear up. My pulmonary health was such that I was

unable to get dental work,

as my lungs constantly had infections:pneumonia, and inflammation In short, my

lungs were not strong enough

to go through work in a dental chair.

Secondly when I was well enough to seek treatment in 2003-no dentist would touch

me with a 30 ft pole-

why? Because they did not know anything about Mito. So I continued rounds of

antibiotics when the abcess

would build up again.

You mentioned cracked teeth. My teeth began chipping and breaking off too.

In December 2004 my health was rapidly declining, so much that I was unable to

walk, having

strokelike episodes in the doctor's office. This was the first time my pulmonary

doctor had witnessed

them. I was immediately put in the hospital, where I confessed to Dr. D I was

scared of dying. I spent

4 days there on morphine and Dilaudid. 2 of which, the machines kept going

off/nurses rushing

frantically about me. A very frightening ordeal.

In February my abcess began back building and in a desperate attempt I reached

out to an oral

surgeon whom I heard dealt with high risk patients. He had never heard of Mito,

but was familiar with

Muscular Dystrophy.

In March I went in for a consult and found out the abcess was quite large. I was

put on a high dose

of Clindamycin and we waited to see if it would clear up enough. They wanted to

make sure there

was the least amount of infection as possible. The game plan was to remove 12

teeth April 14th.

Surgery was done at a hospital where I was put on a ventilator: same day

surgery.

When they opened up my gums- the surgeon found not one abcess, but an abcess on

nearly every

single tooth he removed. Only the one was visible on X-ray. Startling, isn't it?

This is why the surgeon

felt my system was likely poisoned, instead of Mito.

It took a little over a week to heal and believe me, the pain was as intense as

previously.

Thank goodness for morphine. 2 weeks later I began to see changes in my health

overall.

I was getting my energy back and my legs didn't seem to have the major burn.

Hip/Spine

pain lessened.

At the month mark, I was doing wonderfully. Energy was back, and life was good.

My advice is never to wait about getting dental work done, if you can help it.

The surgeon

said all the infection could have sent me to my grave and it nearly did. The

experience has taught

me that at the sign of any infection, great or small-I have to be seen

immediately. Because we

with Mito know seeking treatment is better than to deal with the consequences.

Hope this helps. Sorry it was long winded...

Ann

Re: infections, especially oral

HI, Ann and Everyone

I am glad you are feeling somewhat better. Your story is very

interesting for me. I had a chronic sinus infection which was

undiagnosed for a long time, and I am only now sure it was longstanding

because the symptoms finally got so bad that the ENT could " see "

something, and the antibiotics did clear it up. Looking back, I am

sure it was lower grade for a long time, because I had the same

symptoms, just a little less so. When it finally flared, I felt really

really AWFUL. Could have been mistaken for a mito flair, crash, etc.

The ENT said " infections can make you feel like that sometime. " You

can believe that I will now hunt down any other sub grade infection

more vigorously.

Interestingly enough Naviaux spoke on that topic in St. Louis, and I

just got his tape the other day. His take, as well as I can interpret

it, is that infections, especially viral, but he did not exclude

others, can exacerbate mito problems and cause major losses in mito

patients. He had statistics on a small population of known mito

patients. In the past I have had major setbacks near the onset of

other infections, but they were garden variety, small, and I did not

make any connection. From his position and my own very dire recent

experience, I will now watch infections very very closely.

That brings me to my question to you, Ann. Could you tell me what kind

of oral infection you had? I ask because just 2 weeks ago they found a

cracked tooth with major abscessing. I had it pulled. The dentist said

I had major bone loss due to the infection (so therefore it had been

there for a while) but was not too concerned. I asked how the

infection will be cleared from the bone, but got no satisfactory

answer. In the light of the above concerns, I am wondering how to take

care of this further. Does your experience shed any light on this?

Since my teeth are old and many capped, I have always wondered how to

identify a problem early, but have not gotten any satisfactory answer

on this from several dentists, and indeed the recent problem was not

caught early. They just don't seem to think dental abscesses can cause

major health problems, and that does not seem logical to me.

Any thoughts on this issue would be appreciated.

Regards to all

Sunny

> Hello,

>

> Some of you may know me and most may not. My name is Ann and I'm a

> mom with Mito. Diagnosed in 2003 with Mitochondrial Myopathy, it was a

> bittersweet day: 1. because there is no cure or treatment. 2. I found

> somewhere I belonged.

>

> For years I had fatigue, pain in my legs and spine, eye flareups; you

> name it, I probably had it. I went through the ringer of tests and had

> been diagnosed in previous years as a " probable " MS patient. I had the

> symptoms, just never had the test to prove it. So in 2002 I met with a

> new doctor at the MS Clinic who began looking into rare illnesses. And

> well, that is how I got my diagnosis-shortened story, of course.

>

> 2005:

> In April-Following extensive oral surgery, 2 dental offices put me

> under the assumption that I was probably misdiagnosed with Mito. My

> health significantly improved: making a 180 degree turn. In August-My

> pulmonologist said prior to the surgery-the infection could have

> combined all the Mito symptoms into one front, causing my health to

> rapidly decline. He said he was unsure of a misdiagnosis. But given my

> current state of health, he did give me a positive outlook for the

> future.

>

> So where does this leave me? Knowing I am no worse off mentally than

> when I received my initial diagnosis. I know where I started and where

> the road was going in April. And hey if my health starts to decline,

> it isn't like I have been there before. " Been there, done that " I can

> say to myself and hopefully gain some insight I may not have had the

> last time.

>

> --

> By trade, I am a freelance writer and author. Whatever the

> opportunity, Mitochondrial Disease Awareness is one topic that lays at

> the forefront of what I believe in.

>

> Guess that's it...for now anyway.

>

> Sincerely,

>

> Ann

>

> All new (www.HeartbeatsForMito.org) featuring 33 children affected by

> Mitochondrial Disease

>

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