I truly understand. I too have been treated for going on 10 years with little improvement. I know there is permanent damage to my joints. Do you take acidophilous to help with your stomach issues. that or like one yogurt a day. I know it is tough but you can't give up. Then it will just continue to attack. Have you been tested for the Co-infections that the ticks can carry too? My new LLMD told me that reason why alot of the treatment I did before did not help was because if you have a co-infection (most do) or more you have to get rid of that first before concentrating on the Lyme itself.
So now I have been on abx for that the last 2 years and not really any difference. I am about to go back on Mepron combined with Zithro so I know that I am not going to feel much like living for a month or too. Also diet helps trying not to eat sugar or bad carbs can help us feel better. I know that everything with this disease sucks. Not only do I have it but so does my husband and daughter (not as bad). I too have to take narcotics for the constant pain in my legs and ankles. If not I wouldn't be walking.
Hang in there. I know that I have cam to the conclusions that I will proabably be fighting this for the rest of my life. I guess maybe through research we may get lucky one day and them find out something that can help those who have had this all their lives and actually be helped. Hope you feel better soon.

I've been taking acidpholus from the start. I had babesia for sure, but 2 years of malarone/biaxin and another 8 months of mepron/zithro seems to have done it in. I may have bartonella, but I can't take the other medications for it and doxy doesnt seem to be doing anything at one a day and my stomach won't tolerate 2 a day. I was thinking about taking Factive and trying that but I am just so tired of it., and I've had bad experience with cipro and levaquin.

The only way for me to know if something is still in me is to go off meds for a while and see if and how much worse I get. I have never tested positive on a western blot/elisa and I haven't tested positive for babesia in a long time, even though I had it at the time.

Oh, I'm so sorry, lymie100110! I can certainly understand your frustration, after TEN years of treatment! Out of curiosity- have you been with the same LLMD the entire time? I have heard of some lymies who switch if they are not making progress (I am not blaming your LLMD's treatment, however), to see if another protocol might shake things up....Have you tried "pulsing"? That could give your stomach (and body) a break from antibiotics, at least....

Sorry- I'm sure you've thought of everything, if you've had 10 years to research.

My teenager has been on treatment for 1 1/2+ years (nothing compared to 10 years, admittedly). She keeps plateauing. Although tons of horrible symptoms are better or gone, she's left with insomnia and extreme fatigue (is sometimes only awake for 1-3 hours a day). Either of those symptoms can be debilitating, and keep one from living her life. I must admit that I have started to wonder if these symptoms are due to permanent damage of some sort. I pray not....

Hang in there! Keep us informed of any changes.
Well Wishes!

This is my 2nd LLMD, I switched about 5 years ago. I've tried pulsing, I might try it again with Factive, I don't even know anymore, I see my doctor tomorrow.


Part of the problem is that the winter weather has the pain going right through the darvon and ibuprofen. My hobbies are things that require concentration and safety so I cannot do them with the pain and pain meds in me, I just don't trust myself to handle power tools.

I need to get a better pain med, but my doctor is leery of a new one, me being 25 years old I can't blame him. The problem is I'm taking darvon every 4-6 hours and still have breakthrough pain that is 3-4 easily and 5-6 several times a week. It's better then what it would be without them, but it's not good enough when you have to deal with it every day.

Wow... this is so hard. I don't even know what to say. I'm glad you got the babesia for sure... that is a big buggar out of the way. As for the stomach, do you mind if I ask what kind of probiotics you took? Acidopholus is not really enough for what we are putting our stomachs through... and the timing of the pro-b's makes a big difference. You probably knew that... I'm sorry... Grasping at straws here. I don't blame you for being upset. I hope you don't give up... there must be a way for you to feel better... I'm sure there is. hugs... SS

Don't give up Scott! Make a list of the issues you can live with and the ones you can't, and talk to your doctor about your priorities. If the pain is #1, talk about other ways to fix it. Maybe corrective surgery can fix some of the permanent damage. Talk to your doctor and see if it's possible that you don't have active Lyme anymore, and what you have are just the leftover... at 25, there is no reason NOT to demand a better quality of life for the duration of it. You don't wanna spend the next 50 years like this. You still have options! Keep fighting ;)

I am so sorry for what you are going through. I can understand your discouragement. I would definitely do what slrow suggested and check into the co-infection thing. I know you've been on a lot of abx, have you been on ones that are related to a co-infection that matches your symptoms? Perhaps you have lyme, co-infections, and something else? You ever watch that show Mystery Diagnosis? Maybe you have something unrelated to lyme that needs to be fixed first? Don't worry about ranting. You have plenty of reason to! (( hugs )))

Went to the doctor today. Have a new plan, he has me on two new probiotics for a couple weeks, then we start pulsing doryx, 2x a day 5 days on, 3 days off. I also got some vicoprofen, that will rally come in handy the way the weather has been.