I am calling my Lyme Disease Doc tomorrow and going to ask for thr IV so at least i have a chance here, otherwise my body is fading fast. Swallowing feels loos on the left side, almost numb, like muscle is mssing from that side.
If you guys can tell what the best treatment is i will ask for it and take a week off to herx for a while. I just hope it helps me. THanks again everyone.
-Luke
Posted by blackbirdsings (Member # 7972) on :
Luke, hang in there somehow, I know it's hard. I'm in a similar boat right now and really need relief, as I am going downhill and it's scary.
I am also curious on replys about best treatment for neuro lyme AND advanced staged chronic lyme.
Thanks!
Posted by bettyg (Member # 6147) on :
Luke, I just did a search on "neuro lyme treatments" and these 2 threads came up:
Hope they may be of help. These were only 2 with that SUBJECT heading; but if you go for the entire message; there were 150 threads!
Posted by Ms. Myoclonus (Member # 6750) on :
Hello, Everyone responds differently, but I've had good experiences with IM Bicillin. The shots cause less hassle with my insurance company and in my opinion are almost as effective as IV.
I combine the shots with oral antibiotics. I started at one shot a week and increased to one shot every three days.
Take care, Ms. Myo
Posted by painted turtle (Member # 7801) on :
As well, despite the cost (my insurance did not cover the bicillin and that stuff is not only hard to come by, but expensive)...
I have found that the bicillin im has been the most effective.
Although I do fall back and am not really out of the woods, improvements have been made.
There are side effets of the bicillin though and at first I was not sure if this was herx reaction or side effect and I think I have determined as a side effect a very intense pain in lower back bones which I never had before, also a more intensity in nerve pain.
Other than that, biaxin was good too.
Flagyl has its place as well.
This just based on my so far 6 month experience.
I think cognitive therapy with a speech therapist (if you are slurring words and stuttering, etc) is essential part of the healing process, it is imperative. And I think that part is tha hardest part!
However, Luke, and this is important....
it is sometimes really key to go slow. If you are heavily loaded with the spirochetes, you simply cannot go fast or you will make your condition worse...hard as that is to imagine.
The first llmd who diagnosed me said I will not be going IV because it would probably kill me that is how bad it was! And these months later, as I am able to look back over the process of really intense herxing thinking going to die, burning spine, etc etc, I see what he meant.
Patience and trust....!!
Posted by David95928 (Member # 3521) on :
Me experience with Bicillin combined with Biaxin has been good. Your doctor has used both of these with good effects. However, he will surely want to start you up slowly. It's understandable you would like to get this sqared away as quickly as possible but I've seen people, usually young guys, hit it so hard and fast with multiple meds and dietary supplements that they actually got much worse and lost even more time. Lyme treatment is a marathon, not a sprint.
Posted by luke339 (Member # 8580) on :
I agree but the muscles in my neck are atrophy and my swallowing is getting worse. The muscles in my back are jello. I am actually really scared this aint Lyme but test will tell me this week. Man I will take Lyme over the alternative anyday.