I'm on the "shots in the butt" right now.
There no fun but they are working.Most have been on abx for 8-12 months solid before any improvement and then continued for a while.
If that's not the case, have you been tested for co-infections? Ticks carry all kinds of nasty stuff.
If not you may have another infection along with Lyme and until you treat that you won't get any better.
Also, insurance or not you need to see a LLMD. It, more than likely, will be the difference in getting better and getting on with your life or not.
Have a garage sale or something and get the money.
I'm on the "shots in the butt" right now. There no fun but they are working.
quote:
Originally posted by Lenny777:
How long were you on treatment without going off of it? A few months here and a few months there won't cut it.Most have been on abx for 8-12 months solid before any improvement and then continued for a while.
If that's not the case, have you been tested for co-infections? Ticks carry all kinds of nasty stuff.
If not you may have another infection along with Lyme and until you treat that you won't get any better.
Also, insurance or not you need to see a LLMD. It, more than likely, will be the difference in getting better and getting on with your life or not.
Have a garage sale or something and get the money.
I'm on the "shots in the butt" right now.
There are other alternatives like the Rife machine. I don't know much about them but some people swear by them. You can do a search on this site and read up on them. http://flash.lymenet.org/scripts/search.cgi?action=intro&default=2
If you go to the "seeking a doctor" section http://flash.lymenet.org/scripts/forumdisplay.cgi?action=topics&number=2&SUBMIT=Go and post your info someone from your area will help you find a doctor.
There are a lot of really good knowledgeable people on this site and you will get more responses when everyone wakes up. They saved my life.
First off, Lenny and SpdDrv are dead right -- do keep trying for an LLMD. And I agree with Lenny about abx -- they're the lesser evil, and you can do a lot to mitigate their negative effects.
I don't know what mix of orals you were on, and it sounds as if the shots were bicillin? Anyway, coinfections like babesia, erlichia, bartonella, and mycoplasms are as big a problem as Lyme. In fact, the whole deal needs to be renamed Tick Borne Illness. If you haven't treated for those, it's not surprising that the abx weren't much help in the end. And I hate to say it, but you really weren't on that long a course of treatment.
You've had LD/TBI for a while now -- the disease is disseminated, and you'll need an aggressive course of treatment. You'll probably also need a range of complementary tx -- many people have done extremely well after treating for parasites, heavy metals, and so on in addition to the abx. That info is all here on Lymenet and at other sites on the Net.
So -- Print out the treatment guidelines by Burrascano at http://www.ilads.org/burrascano_1102.htm
Print "Diag Hints & Treatment Guidelines..."
In general, browse http://www.ilads.org and read the new summary and the articles.
Get the ILADS tx guidelines, and keep pounding on doors until you find a doctor who will treat you.
Coinfections http://flash.lymenet.org/ubb/Forum1/HTML/021366.html http://flash.lymenet.org/ubb/Forum1/HTML/008428.html
Doctors can be found through the Seeking a Doctor forum. at http://flash.lymenet.org/scripts/Ultimate.cgi
Also see Links for new LymeNet members at http://flash.lymenet.org/ubb/Forum1/HTML/009342.html This will also give you links to the Rife and other sites.
You can see a great story about recovery in progress at http://flash.lymenet.org/ubb/Forum1/HTML/026400.html There are other success stories at http://flash.lymenet.org/ubb/Forum1/HTML/022173.html
For a lot of us, it's not easy and you really have to work at finding doctors etc. Your experience with the medical world is pretty common. It's not you -- it's them. But the good guys are out there if you look for them. Part of the side effect of LD is discouragement, depression, and feeling like you can't cope. But keep pushing.
Come back any time with questions and updates. We've all leaned heavily on Lymenet from time to time to get us through this.
[This message has been edited by minoucat (edited 15 July 2004).]
have you been to an llmd who will treat babesia? If not then I would go that route...it sound like this maybe a problem for you..
Lisa
I was on and off abx-orals and IV for YEARS. The main problem was that I was not treated soon enough or long enough or with the right high dosages initially.
I didn't find an LLMD until it was just about too late. I spent 5 years off and on in a wheelchair due to episodes of parlysis and other problems. This was very hard with 3 children-2 of them with Lyme!
Consequently I am left with neuro damage; myoclonus and cognitive problems.
The above info is why it is so important to get to an LLMD ASAP. If I had known better about 12 or so years ago, when this whole mess started, I would have; and probably wouldn't be permently disabled. Please get help soon. You too, could get permently disabled.
It is wonderful that you are taking supplements. I believe that my doing this, along with herbs and anti-fungal meds and a low yeast diet, that it protected my organs form any damage.
But, spirochete caused diseases don't go away with only these things. They must be used together. There are alternate routes, but you must be very informed by professionals-not just guesswork.
I think that you are trying to do the best that you can without having funds, and my heart hurts for you and your frustration. Maybe those here will help you to make some more financial decisions that will help you to be able to get to the right LLMD.
It is so frustrating to go from doc to doc, and to not be treated properly, as well as the famous ER, where most of us have been sent home on anti-anxiety meds !!!!!!!!!!We know about the psych route!!!! Many people, not just docs are very ignorant about this disease-even though they may try to do their best. Others are downright demeaning.
About your heart, besides LD, and other tick borne diseases, hyperthroidism can cause crazy heart beats. I had atrial fibrallation, and a resting heart beat of over 170! I had all of that taken care of, and with meds, and treatment-that part of me is fine! Have you ever had your thyroid checked? Thyroid problems often come with LD.
Please keep us all informed as to what you are doing. Please find some way to see an LLMD. Many people have actually died from tick borne diseases. This is not something to fool around with, and treat yourself.
Take care-terter
I think co-infections are more common than most doctors think. As far as I know, my state has never had a reported case of Babesia, but I sure got it!
It will be tough to get rid of the Lyme if there is another co-infection that is not being addressed.
Hope you get some relief for your symptoms. Best wishes.
quote:
Originally posted by wolf1231:
Lenny, oral for about 6 months with a couple of breaks. Iv for a month, shots 4 months. the rest of the time just treated symptoms because they say that's all you can do. 8 months of antibotics seems like it would really ruin immune system which is already depleted.
Wolf,
You did not mention taking any probiotics while on antibiotic treatments. Probiotics (L. acidophillus, L. bifidus, etc.) are the good bacteria that live in your intestines, that help to break down foods you eat and also help keep the immune system strong. Long term antibiotic use depletes your good bacteria, and expose your body to overgrowth of yeast (candida) and other bad bacteria, which weakens the immune system. You need to be taking probiotics while on antibiotics to replentish the good bacteria that is being destroyed by the antibiotics.
There are a lot of good probiotics out there. I take a product called I-Flora, which is working good for me. There are also some that are not well tolerated, so you may need to try different brands until you find the right one. Good luck with your recovery.
DMC