I have been completely off abx for about two weeks. I had a virus last weeks which gave me a scare but since then, I feel ok.
My lyme symptoms are nearly gone. I have twinges in my knee now and then which I know is lyme related. My only bartonella symptom is my shins tend to burn when I wear anything tight around them, like socks. I had a couple of brief muscle twitches last month. Sometimes I feel hot but it is not the hot flashes that make me want to tear my clothes off.
It is nice to be off the abx to give my body a rest. I can sleep much better too which helps me. I am not even loading up on herbs - just so burned out, I need a break.
For those of you that are well, when and how did you decide it was time to quit. Did you taper off abx, pulsing them for a while, or did you just quit completely?
I am going to the doctor next week to get refills ( I ran out which is one reason I quit so abruptly) so that I can pulse for a while.
I would appreciate anyone's input. What you have done or others that you know. I always feel nearly well in the spring and then get worse in the late summer. I tend to think this might be part of that pattern so I am cautious about quitting completely. But it is so nice to have a nearly normal feeling to my life right now, not gagging on all the pills.
Posted by Brussels (Member # 13480) on :
Bumping
Posted by glm1111 (Member # 16556) on :
Given the magnitude and complexities of this disease ,I don't think going off of any protocol is wise. A maintenance dose is a good idea.
There is too great a risk of a spirochete hiding out or a parasitic egg that's left over. I think that's why people relapse.
Taking a break is fine and gives the body a chance to rest and regroup,
Gael
Posted by jkmom (Member # 14004) on :
I only have mild symptoms and won't feel comfortable stopping my abx until they are completely gone. Then, at the first sign of a re-appearance, I will want to address them again.
Just my opinion.
Posted by KS (Member # 12549) on :
I stopped all antibiotics over a year ago. This was my decision, not a LLMDs.
I had been treating for 20 months with a variety of different antibiotics and had hit a plateau. I improved significantly on antibiotics but then saw no further improvements for 4-6 months and decided to take a break and to see what happened.
I am not 100% and am left with some residual nausea and some aches/pains. My issues flare as well and it has taken time for me to appreciate the patterns without going into full blown panic thinking that I am still infected with lyme, etc.
I have not gotten any worse since coming off of antibiotics which for me, supports what I thought when I stopped antibiotics a year ago....that my remaining symptoms are just permanent damage.
It has been a huge relief stopping the madness of treating and coming to terms with the fact that I just have some permanent damage from having been so sick.
Just my story...
Posted by sixgoofykids (Member # 11141) on :
Typically, LLMD's consider you need to treat two months past the last symptom. If you are still having symptoms, you still have some part of the disease active and it can progress so you get sick again.
I was extremely ill. Disabled. Bedridden. Today I have NO symptoms. No permanent damage other than my memory isn't what it used to be.
Posted by Lymetoo (Member # 743) on :
I stopped after 4 yrs even though I had some residual pain issues and fatigue. ( I actually think that was due to gluten intolerance. )
I have been off abx now for 5 1/2 yrs and doing fine.
My LLMD had me go thru a series of taking very high dosages of flagyl before stopping treatment. I didn't herx, so I was "good to go."
It was MY decision to stop treatment and I'm glad I did.
Sometimes it's hard to tell which symptoms are from taking abx and which are from Lyme.
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by Lymetoo: Sometimes it's hard to tell which symptoms are from taking abx and which are from Lyme.
Agreed. I was different since the last part of my treatment was using alternatives.
Posted by nefferdun (Member # 20157) on :
Thanks for the input. It is such an ongoing battle and I sure don't want to retreat when the enemy is on the run. It is just so tiring and my body was having trouble with the side effects. My mouth got so dry I could not talk and my eyes were so dry they hurt. That has gone away since I quit. I tried plaquenil and got so dizzy I could not walk. I don't know if that was side effects or virus. So I will have to slowly try to introduce something else.
I am thinking of pulsing for awhile to see if I can tolerate that better. I am going to suggest 4 days of bactrim ds and biaxin, skip a day and then 4 days of doxy, biaxin and tindamax, then 20 days off. I want to pulse it with my normal flaring cycle.
I have gotten completely floxed on drugs twice before so that the side effects were so bad I could not continue them. I am afraid to push myself there again. I am just no one of those people that can take this stuff long distance and not have consequences.
Posted by beths (Member # 18864) on :
I pulse similar to you=3 dayd amoxy/tindimax, then 3 days bactrim/biaxin, then 3 days malarone/zith-start 5 days before my period. Doing well!
Posted by springshowers (Member # 19863) on :
This is interesting question and I relate to a lot of what is written.
Is it common (as I keep hearing this and I have this too) when I stopped treatment I still had pain and fatigue left to deal with ..
But even now since looking back and just stopping treatment about a month ago now.. the pain and fatigue are getting better all the time.
Its like my body is adjusting? or the idea of permanent damage has been on my mind too. I sure hope not. The idea of FMS or CFS too having some other type of basis such as hormones and other systems off and still having to work on those that were affected by the infections. That may take time to balance back and maybe a lot more than time. Esp since that is the symptoms that it all started with when I look back too.
I think that when you feel the side affects are soo high and you feel so toxic from the abx then talk to your doctor about how handle it because it would depend on so many factors that are so individual. There are things to this question that we can not answer from here because of that individuality. Things like how long you were sick or how long you have treated and your symptoms and severity and on and on..
I hope it works out but from your post it looks like you know you are not fully ready to stop it all and tappering and pulsing are great ideas.
But on the other hand stopping and taking breaks to see where your at is always a great idea if you ask me. Because of how bad it can be and get on abx it can be hard to tell what is die off and what is a herx and what is a flare etc. So if you stop for a few weeks or even a month you will know what are the true symptoms of the disease and not the with abx... in the mix. It sure has helped me know better how to proceed..
Good Luck..
I am not planning on going back on abx and I had tappered only for two months or so on orals after IV treatment stopped.
I though did Rife for about 3 months in the end of the IV treatments and all during the tappering of the orals and still doing it now.
If you choose something that you feel will keep your spot or keep the bugs from coming back and keep them in check . those that are left.. because I just think we can not get every last one dea.. sadly...
So if you can find something you think works for you that is not abx that I think is great and great for your body so you do not have to keep those abx in your body...
Posted by nefferdun (Member # 20157) on :
Two years ago I could hardly walk, I was so exhausted. Today I transplanted five trees. I am beginning to feel alive again and have plans for my future. But I can slide very easily down into the misery of the disease again - it is sneaky - hard to tell what I am feeling until I am overwhelmed.
I will ease up on the abx for a while because I feel I need a break. I think if I get sick again next fall, and I suspect I will no matter what I do now, then I am thinking I will go to a clinic for IV treatment. I am so tired of scratching at the surface of this when it is so deep.
This happens to me every year. I always feel better in the spring. It makes me think it is somehow related to the seasons, vitamin D and sunlight exposure and that is more of a cure for me than any drug.
Posted by springshowers (Member # 19863) on :
I also feel better each spring. Not sure what it is for sure. I also got sick of scatching the surface and I did go to a clinic and got Integrative IV treatment and it really made a big difference and if I relapse every again I am doing it again for sure.
I responded to it so much more and better and effectively. I am just someone who could not get better at all using orals. But boy did I give it my all. Lots of undo suffering went on with herxes that never ended .. ugh
Good Luck to you.. I hope you just stay better!! and better.. and better!!
Posted by Marrit (Member # 25454) on :
This IS interesting. After I got "Fibromyalgia" a few years into this illness, I noticed winters were horrible, and I always improved in the Spring. Summer was tolerable with monthly flares, Fall okay, then Winter came and I would crash. Weather changes are a known factor with Fibromyalgia, most Fibros can predict the weather by how they feel (similar to arthritic people). Thyroid seems to be involved somehow. My TSH number is always good at ~ 1.1. Never changes. This past winter, when I was sick continually, I noticed it went up to 1.9. That's not high, but it is a significant change for me.
Long before I got sick, I began to develop SAD. I lived in Minnesota for many years with long, cold, dark winters. I found myself depressed all winter, especially on days when the sun didn't shine. I wanted to sleep all the time, and I baked and ate a lot of sugary foods. I still struggle with SAD. Only now it occurs year round on days when the sun doesn't shine. I don't bake and eat the sugar, and I don't even sleep a lot, but I struggle with low mood and fatigue. It is subtle, and I'm not always even aware of it. If it's a dark day, and I'm feeling down, and the sun suddenly comes out, I'll instantly feel up and might not even know why until I look outside. It's like someone flicks a light switch from off to on.
Vitamin D supplements do not make any difference. It has to be the natural sunlight.
I don't know if this is related to infection or a glandular malfunction (caused by ?)
I have read of trials using active T3 for SAD during the winter months. I have never tried this.
I would be interested in the thoughts and experiences of others.