What is the mortality rate of lyme? My aspetic meningitis symptoms keep getting progressively worse despite abx and tons of supplements and I'm pretty sure I'm dying.
Posted by LisaK (Member # 41384) on :
I tried looking this up several months ago. I found nothing with numbers.
sorry to hear of your situation, Dale!
Posted by poppy (Member # 5355) on :
No one knows. Considering how often it is misdiagnosed, this would be impossible to calculate. Plus, the CDC has gone thru death certificates naming lyme as the cause and discounted every one of them. Then, they pretended to analyze whether carditis caused lyme deaths, and decided, well no it doesn't. Those 3 cases reported in the medical literature were anomalies.
They have never admitted this can be a fatal disease. And the fallback position when 3 carditis deaths are irrefutably identified, is to say it is very rare.
So, Dale, hope you have a good doctor that can prevent you from becoming one of those non-lyme fatalities. You registration date is very recent. Don't know if you just started treatment or not. If recently begun, then it is a bit early to be looking at the worst outcome that might occur.
Posted by lymenotlite (Member # 33166) on :
Be sure to do a search on this forum for your condition. Sometimes you can get some very valuable information.
Posted by randibear (Member # 11290) on :
I think it's the co-infections or complications of lyme rather than a basic lyme diagnosis.
my friend had lyme but died of hodgkins. m y mom died of chf but I'm positive it was untreated lyme.
Posted by DaleS (Member # 44571) on :
Thanks for the help. I didn't know about this site for quite a while. I have tried to see other drs but keep testing negative. Drs insists the test is accurate. Neuropathy has gotten very bad in my feet, chest pain and now meningitis. My neck is so stiff, have headaches, ears ring, upper spine pain, pressure in eyes. I have another drs appt soon but I dunno if its going to matter. I have taken up to 600 mg of doxy and it doesnt touch anything. Usually just causes a flare up 20 to 30 minutes later, same thing when I take supplements. After the flare up things calm down but then just worse. I'm going downhill so fast.
Posted by DaleS (Member # 44571) on :
sorry, I forgot to space. I'm so stressed and
feel like I have no one to talk to that
understands what I'm going through.
Posted by DaleS (Member # 44571) on :
Before this I was healthy. I was diagnosed with bfs in 2011. Does this mean I could have an over active immune system?
Posted by lpkayak (Member # 5230) on :
A good lyme literate doctor needs to evaluate this. The sx sound a lot like lyme and herx, but you need a real llmd to be sure. If you keep going to regular docs - even if by chance you get a positive lyme test you will not get adequate trearment.
Neurologists and infectious disease docs are the worst. Because they should know the research. Primarys and er docs are worthless. The most you will get wit a positive test is 21 days doxy.
Which doc dx the meningitis? What is the treatment plan?
Posted by DaleS (Member # 44571) on :
I talked to steve and he said it sounded like asepetic meningitis, he had it. I'm going to a good dr in 3 days. I'm so sorry
about what I said earlier. Please forgive me and unblock me. I'm begging you. I'm so scared. How is it possible that lyme syptoms
show up over a year later, still infection I'm guessing?
Posted by GretaM (Member # 40917) on :
Dale, Sorry you are going through this suffering.
The true mortality rate of lyme is unknown.
It is not recorded in many coroners/ME reports.
Personally, I feel our #1 concern is suicide by lyme patients. That is unfortunately very common.
I have had inflamed meninges/encephalitis on and off for about a year and a half.
Something that helps me is Diamox. It takes the pressure down.
When do you see an LLMD/LLND?
If the pain is very very bad, please go to the ER. Don't mention lyme, or menigitis, just the symptoms you have.
At the minimum they should give you an IV cocktail for "migraines".
It's short term relief, but has helped me in the past.
And also, please don't google lyme+memorial or similar because it is very depressing and not a good thing to be reading about when one is in desperate pain.
And please, if you feel you can't go on with the pain, and suicide even crosses your mind, phone the numbers at the very top of this forum and phone a friend to come sit with you.
I've had to phone a friend to sit with me. It is humiliating to admit, but makes all the difference in staying alive.
Greta
Posted by DaleS (Member # 44571) on :
Thanks for the help. Is Diamox prescription only? Should I ask my llmd about it? Three more long days until I see the llmd.
I have gone to the er about 3 weeks ago and they did mri, cat scan abd said everything looks normal. They did give me
something for the pain and it helped quite a bit. I'll try not to google, hard not to when you feel so bad and just want to
feel better. As much as I suffer I don't think I ever could.... we have an 18 month old girl. Without her I probably would
have had to call the number.
Posted by GretaM (Member # 40917) on :
Yes prescription only. 2-3 times a day.
Ok three days, you can do this! Praying for you.
PS. Congrats on your baby. Posted by DaleS (Member # 44571) on :
Thank you Posted by faith,hope&love (Member # 44953) on :
Dx with this dreaded killer 2008, Dr. did usual Doxy and never retested. Years later and all test come back neg. for lymes but going down hill fast day by day. Finally found good Infect. Disease Dr and dx with Lymes! Treatments not sucessfull and lately most times you just wish to die from all the intense muscle pain.Pain meds stop working and feel so hopeless. Praying for all out there in my situation cause something got to give
Posted by DaleS (Member # 44571) on :
Sorry to hear about your situation. I will pray for you.
Posted by Maia_Azure (Member # 44330) on :
Dale, doxy did nothing for me too. Oddly when I went off it, my cognitive symptoms would flare, one day I left work it was so bad.
I was on doxy for acne, I've had flare ups continuously as an adult. When I went to a LLMD, she started me on Zithromax, but a month later with no improvement and worsening cognitive issues, I was put on IV ceftriaxone.
If you are having really bad CNS involvement, doxy might not be the best. Most MDs are convinced 3-4 weeks of doxy and you are cured, don't believe it.
I did and I suffered another year almost losing my job! I had to stop going to many doctors, as they were taking a mental toll on me.
one refused to help me and drug tested me without my consent and yelled that I wasn't working hard enough at therapy. I wanted to literally punch her in the face, and I'm a pacifist!
Everyone's treatment is different depending on their disease and co-infections. I have babesia as well as bartonella, which means I need to fight those as well.
Some days my knee is killing me and I have vertigo, then it's gone. I had sleep apnea, now it's not occurring. My symptoms are cyclical and come and go, that's what made it so hard to pin down.
One day my joint in my foot was so swollen I couldn't walk. 3 days later at the podiatrists, no sign of it. Diagnosis: stop wearing flip flops 😡
Hang in there, you are so close, the first step is proper medical care. The ride is rough and bumpy, but I'm told there can be a light at the end of the tunnel.
Posted by DaleS (Member # 44571) on :
The llmd I'm going to see has a thorough pamphlet. It states that the dr will basicALLY put you on iv abx for neurological issues. So no
more weak doxy crap. I'm sorry that you have gone through a lot and have the coinfeections as well, makes it even harder. I hope you are
right. I feel fine for a while, then I feel so bad like I'm going to die and I need to lay down and take a nap. Then I'll wake up and feel
ok for a while and it comes and goes all day. Mornings are always the worst for me.
Posted by Maia_Azure (Member # 44330) on :
I am completely out of it in the AM. I had to drink at least two cups of coffee to get to work to focus.
Sometimes just taking a shower sends me to bed for a nap. Some days I feel moderately better, others I feel like I am literally dying.
I don't know how it's possible to feel this bad. My head, my joints, my hip, I feel it in my bones (nerves?), my muscles.. Sometimes I think it's my organs hurting me.
Then, my rib joints hurt and I feel heart palpitations. I get asked a lot if my pulse is normally under 60bpm at rest, or why I seem out of breath just getting out of a chair to move to another.
I don't think I could live like this for the rest of my life. It's prison. I'm getting through day by day, waiting for the day I feel better. I forget what that's like.
I don't know what it's like not to feel like I'm carrying a lead blanket around me with stabbing pains all over. I sleep most of the day.
I sometimes wonder what it would be like to be a white blood cell in my body. Like its some desolate battlefield and there are too many of the enemy hiding like snipers.
I think a lot about the friends who don't call anymore, chronic illness is hard for them. They moved on with their lives. Get married, have kids. Several of them said they would visit me during treatment. They don't even call.
It's the loneliness illness I've ever had, compounded by the fact that most doctors don't believe me. That's why I come here.
There are many who fought and won, or tipped the balance and put it into remission. You just have remind yourself of that. And stay away from bad doctors and depressing web stories.
Posted by Lymedin2010 (Member # 34322) on :
I was undx for at least 17 years. found out last yr. dr put me on doxy for months. it ruined my GI which was already bad.
I needed IV, I think, but couldn't afford. I had/have so many nuero sx. I'm getting better by other methods, but would have liked to tried IV . I think that would have helped lots more .
but , who knows. everyone is so different.
the right dr makes al lthe difference.
I hope you find the help you need dale.
Posted by DaleS (Member # 44571) on :
I'm sorry that you are suffering so much. I wish I could take all your pain away so you would feel better. I agree with you, I can't remember what it is like to feel normal either. My neuropathy in my
feet is so bad. I also experienced chest pain and thought I was having a heart attack. It was so scary. I feel normal for a little while them my symptoms come back
and they are worse than ever. Today in addition to the headaches, neck stiffness, popping noises in my head and era ringing I have now a sore throat and fever. I'm so scared this is meningitis and that I'm
going to die from this. Are you ever in so much pain that you can't sleep?. No one else thinks I have lyme but me. Everyone says you have tested for lyme and it comes back negative so you don't have it. I
know I do and no one understands except for the people on here. No one else understands what we go through unless they have lyme. I come here for support and because a lot of times i don't want to be out in
about surrounded with lots of other people. I'm sorry that all of your friends have disappeared in a time when you need them the most. A good support system is really important. Like you I try to just get
by one day at a time and pray that I get better. I've seen so many drs and they don't believe me either. They think I need to get mental help. I just hope its not too late.
Posted by DaleS (Member # 44571) on :
I'm sorry you have so many neuro sympotms. I'm glad that you are getting better. Thanks Lisa, me too. Off to
the a llmd today.
Posted by lymeboy (Member # 24769) on :
Dale, you are not alone. This is a rough disease and it can take everything from you.
Have you had a Western Blot test from Igenex? Stony Brook? If you want to prove you have Lyme, do not go with the standard Elisa, and use a Lab other than Quest or whoever your insurance covers. Those tests are highly ineffective.
Igenex is not perfect, neither is Stony Brook, but they are doing a more comprehensive Western Blot.
Also, without a LLMD, you will get a doc who reads the test results wrong, or may not even know what he/she's looking at.
You HAVE TO get with a doc that understands Lyme, but also understands the testing. Otherwise you're wasting your time and money.
I had horrible Neuro Symptoms. I'm now off all antibiotics for a year and holding steady with Salt-C and parasite tx. I can ride my motorcycle, I have two jobs, I'm self sufficient.
I went through a bunch of docs. Most of them made me feel worse. But two years with the right doc got me to a good place.
I'm not in remission or cured. I have frequent outbursts, major tinnitus, clogged ears and sinuses that will not quit. I rage for hours sometimes. This is Bartonella, and I am currently trying to figure out a plan of attack to go after that dirty bastard.
My point is that it can get better. But for me at least (and I think most of us here) I had to run the gauntlet of horrible doctors, misinformation, undertreatment, and worst of all, tens of thousands of dollars flushed down the drain.
You don't have to go through a lot of that. There's a lot of us here that will give you good advice and info, and help you get to the right doc. Use the PM if you have any questions that you'd rather not ask here.
Best of luck to you with your LLMD today. Keep us updated. You can get better.
Posted by GretaM (Member # 40917) on :
Good luck at your LLs today! Hope it goes well and you can start treating today.
Posted by 'Kete-tracker (Member # 17189) on :
People rarely die from an uncomplicated Lyme infection (B. Burgdorferi by itself), though they may want to, in severe cases!)
It DOES happen, such as when swelling around the heart is excessive, caused by the B.B. infection, which in turn causes 'heart block'... basically heart failure from the inability of the heart to puimp in the presence of the swelling. This is not a true "heart attack", which is caused instead by oxygen starvation of some of the heart muscles, usually due to blood vessel restriction.
Also, severe neurological involvement, if left untreated, can result in inability to feed, drink & otherwise take care of one's self, which in turn could potentially result in unconciousness & death.
But it's the complications, & the more serious co-infections, like anaplasmosis, that are usually to blame in whole (or part) for expiring. This is what I've understood, anyhow, thru conversations with my M.D. & my own research.
Posted by LisaK (Member # 41384) on :
yes, what you descripbe, I felt very muich like Dale.
terrible encephylitis.
and I had so much pain all night I would moan and cry in my sleep my hubby said. and most I knew it because I couldn't sleep.
hang in there. you can get better. I could barely walk to the mail box a year ago and now I can kind of jog with my dog for 20 seconds, haha. not much but I am so happy with that progress.
also much of my pain has gone.
good luck to you!
Posted by DaleS (Member # 44571) on :
Thanks everyone! I'm sorry you a had to struggle too and are stil having issues. All I can say is WOW. What a difference a llmd is. It was night and day from
any other dr. Best drs apt of my life! I'm doing a detox then going on abx. He did an igenex test as well and is very knowledge in supplements. I told him my
symptoms and he says I guarentee you that you have lyme and probably some coininfections. I feel that there is hope now!!!!!!
Posted by LisaK (Member # 41384) on :
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