This is topic Am I fighting for my life? in forum Medical Questions at LymeNet Flash.


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Posted by Sandy (Member # 8877) on :
 
Hi everyone,
I went to the dentist this week, for the first time in 3 years, he was shocked to discover that all my teeth are loose. I told him that I have Lyme disease and he said that late stages of Lyme can cause due to the salivator glands not producing like they should.

Has anyone ever heard of this?

It shook me that he said late stages of Lyme. What does this mean?

It got me to thinking that I could really die from this. I guess I'm wondering if I'm really fighting for my life?

If I am fighting for my life then I would treat this more aggressively. I would get a secound opion on the treatment I'm receaving and would go to this doctor I heard about that can help to get rid of toxins, I would also go to a specialist regarding my stomach problems.

I've been trying to save money in my treatment because I don't want to get so far in debt that I can't get out. but I vaule my life more then my money.

Is there a point of no return in this illness?

I guess I'm freaking out but my eye sight is getting worse and they are more painful lately and now my teeth are loose. I feel like I'm getting worse.

The anti-biotic I'm taking makes me herx. So I'm down to crushing one pill and dipping my finger in it and that's the amount I take once every 3 days.

If anyone has any information I would really appreciate it.
Thanks!
Sandy
 
Posted by Vermont_Lymie (Member # 9780) on :
 
Sandy,
What amount of antibiotics did your llmd prescribe? They are usually taken daily, even if it is a small daily amount.

Late stage lyme is a serious disease. I have it too, and many people who post on lymenet, but it is treatable.

Everyone has to make the decision for themselves, but I would advise you to go to the best doctor possible, even if the cost is substantial for you. I hope you have insurance, that usually covers something.

My best wishes for your (and our) health.

[group hug]
 
Posted by Sandy (Member # 8877) on :
 
My doctor prescribed Zithromax. The dose to start with is 250 mg. I got so sick on this I thought I was going to die. When I got better I tried 1/2 the amount and the same thing happened, then I tried 1/4 of the amount and the same thing happened. I came up with the new dose and am afraid to try any more then that.
Sandy
 
Posted by efsd25 (Member # 2272) on :
 
I would recommend that you wait until you loose the ability to think before you take action.

Only joking, but I would take Lyme very seriously. But you don't have to go broke treating it. There are less expensive abx then zithromax that can get you back on your feet.
 
Posted by shazdancer (Member # 1436) on :
 
Please call your doctor with what you are experiencing, from the feeling too sick on antibiotics to the loose teeth.

Doctors who have extensive experience treating this disease (I like them to be ILADS-affiliated myself) can tell you if you should be continuing on the course they prescribed, or changed to comething else.

Yes, treat it seriously. But try not to panic -- you can get better.

Take care,
Shaz
 
Posted by bejoy (Member # 11129) on :
 
Just a thought, could your teeth be loose from lack of vitamin C?
 
Posted by seibertneurolyme (Member # 6416) on :
 
I second the question posed by Bejoy.
Vitamin C deficiency can cause scurvy and loose teeth could be a symptom.

Then again osteoporosis also causes this I think.

It depends some on how long you have been sick as to how long treatment will take. In my opinion, the longer you have been sick then most likely your spirochete load is higher and you actually need to treat less aggressively, but for a longer period of time.

I think you should call your LLMD and if they can't help, then by all means get a 2nd opinion.

Everyone is different, but in my opinion you need to detox or whatever it takes to get your med dose closer to a therapeutic range. Some people like hubby never get to the suggested doses on most meds.

Good luck and keep us updated on your progrss.

This is not medical advice, just my opinion based on hubby's experiences.

Bea Seibert
 
Posted by Lymetoo (Member # 743) on :
 
Wow! You've been doing that low a dose for a year now?? Maybe you could ask your dr to try a different med so you can possibly take a higher dose...????

Anyone who's had this for a few years is in "late stage". Even at that, you can get your life back.

If you're convinced you're dying, then it's going to be harder to get well.

Go to General Support and look for Troutscout's newest thread. Maybe that new outlook will help!

[group hug]
 
Posted by luvs2ride (Member # 8090) on :
 
Why on earth would you wait until you are dying to treat this disease aggressively?

Take care of yourself now!

Luvs
 
Posted by Greatcod (Member # 7002) on :
 
Lyme produces a "vigorous immune response" initially, at least in some people. It feels like you are dying. Actually, similiar immune responses to some viruses are so strong that the person actually dies, not from the infection, but from their own immune response.
And that initial immune response to Lyme is to a very small bacterial load. So it may be that all is not lost.
 
Posted by James H (Member # 6380) on :
 
Sandy,

No, you won't die of Lyme Disease. They always write something else on the death certificate. [Frown]

Seriously though, it is treatable. Most of us are 'late stage' by the time we get past the wall of 'lets just wait' and 'that's just a spider bite' and 'we don't have Lyme here' responses.

Zithromax would have seemed like a good place to start, but obviously for whatever reason it doesn't work for you, at least not now.

You need to discuss trying some alternatives with whoever is prescribing for you. If one doesn't work, try something else.

Your dentist is perceptive, good for him or her. Many dental infections are caused by other kinds of bacteria, including a spirochete called Treponema denticola and some of its relatives.

Don't assume Lyme is the only thing at work here, it usually is not. The good news is that most of these respond to treatment better than Lyme does, and getting rid of some of them can improve your health and help your battle with lyme.

I would personally be asking about trying one of the tetracyclines to see if you can tolerate one of them better. Tetracycline itself is usually the easiest to tolerate and is really inexpensive.

They are usually good against the types of things that infect yout teeth and gums.

If something doesn't work, do something else.... but do something.
 
Posted by sometimesdilly (Member # 9982) on :
 
hi Sandy-

all of us are always fighting for our lives, you know?

having late stage lyme, whatever that means, which i have too, just means that you're fighting this time and this thing with one hand behind your back. ok, and maybe with a blindfold on too. there are some ups along the way, and there are downs- lots of them. so enjoy the ups when they come...

as far as teeth. my truly excellent dentist says that antibiotics can easily cause the mouth to dry which affects the gums which affects the teeth.

even with her knowing that, she was amazed that one of my teeth went from 100 percent fine to needing a gigantic root canal tooth within a VERY short time.

word of advice from her: treat the dry mouth!!! there are all kinds of over the counter products out there, including toothpastes and mouth rinses.

so maybe your teeth problems are not directly lyme related, but instead tx related, but who knows?

loose teeth do not equal death in any case, nor does late lyme. keep on fighting on....


dilly
 
Posted by Robin123 (Member # 9197) on :
 
Hi Sandy -- I drink Ultra mangosteen juice daily, with a lot of water. It stopped all my eye symptoms immediately(eye pain, blurred vision and sensitivity to light) and also stopped my gums from bleeding, after just 4 days. Who knows whether it might also be able to help the health of your teeth too?

It's a strong anti-inflammatory and anti-oxidant juice. Ultra's brand also has other juices plus 70 minerals/vitamins added. It's sold at healthfood stores, and cheapest online.
 
Posted by map1131 (Member # 2022) on :
 
Sandy, please do a search on this site for a poster named Gigi and her # is 259. Especially in your case, anything that pertains to dental issues.

You can win this fight. One step at a time.

Pam
 
Posted by Sandy (Member # 8877) on :
 
Thank you everyone for all your advise and encouragment! I'm calming down but am learning to take this Lyme more seriously.
Sandy
 


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