Lyme Disease Support Group
Lyme disease is the most common vector-borne disease in the Northern Hemisphere. It is now one of the fastest growing infectious diseases in the U.S. Lyme disease is caused by infection with the Borrelia burgdorferi bacteria, and is primarily transmitted to humans as well as dogs, horses and other domesticated animals by the bite of infected ticks.
Hi all,
i just need to know how some of you handle the frustration of being on treatment for a long time and seeing no improvement. I was treated for 3 years with abx about 6 years ago. Seemed better except the pain in my knees and ankles never went away so I figured it was damaged for good. Seeing that I have had this all my life and seen doctor after doctor
and diagnosis after diagnosis (some very scary).
Symptoms came back with a vengance and had to stop working that is when I saw treatment with the doctor I have who was highly recommended by quite a few people that I highly respect. So that was 2 years ago. December will be that mark. thing is I asked him when we first went if i would ever be pain free and he said that the last doctor did not treat my co-infection so that treatment was hindered that is why I never got relief or better after all those meds.
So now after being with him for 2 years I am right back where I started. Actually some things have worsened like my depression, memory, and trying to write or type anything is a joke. I spend more time fixing mistakes than it takes me to type the stuff.
I am just so frustrated and am afraid that i am never going to rid myself of this. My faith and family has gotten me through si far but I am really geting frustrated. I looked up his protocol and he is prescribing what other doctors have done too.
I know the difference between herxes and just plain Lyme and the things I am experiencing are just plain Lyme. I will ask him about a more holistic approach Saturday when we go to see him. I mean this is one I actually can afford for my whole family to see since we all have it. And yes I know that my daughter got it from me when preganant just like I did from my mom. I do not want to debate that issue becasue I know alot of people think that is false but I have been told by several doctors adn have done alot of research on my own too for the simple reason that I want to catch it as early as we can in both of them so they do not get like me.
If anyone has ever seen the light after long term abx that has been on them for 5 years please let me know. If anyone else can give me any ideas or info I would greatly appreciare it. i mean the pain if neede can be handled I have lied with it so far but i am afraid that my memory is taking a big hit that it might not recover and I am only 38.
I am so glad that we have this place for support, sorry it is so long but I kind of neede to vent :) Thanks all of you for the support and friendships I have made on here.,Could not do it without you:)
i just need to know how some of you handle the frustration of being on treatment for a long time and seeing no improvement. I was treated for 3 years with abx about 6 years ago. Seemed better except the pain in my knees and ankles never went away so I figured it was damaged for good. Seeing that I have had this all my life and seen doctor after doctor
and diagnosis after diagnosis (some very scary).
Symptoms came back with a vengance and had to stop working that is when I saw treatment with the doctor I have who was highly recommended by quite a few people that I highly respect. So that was 2 years ago. December will be that mark. thing is I asked him when we first went if i would ever be pain free and he said that the last doctor did not treat my co-infection so that treatment was hindered that is why I never got relief or better after all those meds.
So now after being with him for 2 years I am right back where I started. Actually some things have worsened like my depression, memory, and trying to write or type anything is a joke. I spend more time fixing mistakes than it takes me to type the stuff.
I am just so frustrated and am afraid that i am never going to rid myself of this. My faith and family has gotten me through si far but I am really geting frustrated. I looked up his protocol and he is prescribing what other doctors have done too.
I know the difference between herxes and just plain Lyme and the things I am experiencing are just plain Lyme. I will ask him about a more holistic approach Saturday when we go to see him. I mean this is one I actually can afford for my whole family to see since we all have it. And yes I know that my daughter got it from me when preganant just like I did from my mom. I do not want to debate that issue becasue I know alot of people think that is false but I have been told by several doctors adn have done alot of research on my own too for the simple reason that I want to catch it as early as we can in both of them so they do not get like me.
If anyone has ever seen the light after long term abx that has been on them for 5 years please let me know. If anyone else can give me any ideas or info I would greatly appreciare it. i mean the pain if neede can be handled I have lied with it so far but i am afraid that my memory is taking a big hit that it might not recover and I am only 38.
I am so glad that we have this place for support, sorry it is so long but I kind of neede to vent :) Thanks all of you for the support and friendships I have made on here.,Could not do it without you:)
I have been where you are, and there are so many fcators that can cause a plateau or diminishing effect on Tx. It may be time to revisit your current Rx's, after being on Rx's for so long...those smart 'schetes may have become immune to a number of your Abx and then they would not be effective. It could be as simple as that. Did your LLMD catch all the co-infections? That would be second question for me, to the Dr. Heavy metals, candida and parasites (all very common with us Lymies) can also completely halt our progress.
I have been down this road, and truthfully am still travelling it. The answers are there, we just have to ask them and do our research (as usual).
Prayers for you, may you find the answers you need and may God give your LLMD the wisdom to put you back on the path to wellness.
I've been on tx for a year, and I seem to be one of those few who respond pretty quickly to the neuro tx. I sometimes feel guilty about that, reading about how others tx takes a longer amount of time.
Like Alana, I want to write back to support you in any way I can. What I'm hoping my post is able to convey is, that even tho Lyme was doing damage to my body for over 13 years, treatment has returned my mind to (my estimate) 90% or more. I was convinced enough that I was in a rapid decline into senility at the ripe old age of 45, that I tried to talk to my husband about what we would "do" if that happened. I was thinking institutionalization - he refused to have the discussion. Looking back, I'm rather glad we didn't make a plan for that worst case scenario. Could have damaged our relationship maybe.
Please hang in there, as frustrating as it must be. And there IS hope. Before finding the right treatment for me, I scored less than 30% on a cognitive test (out of 100). I scored in the 85% range when I retook the same test after tx. I pray they find the right combo of tx for you to return you to your former self too.
Jenn
ps - Don't worry about correcting typos on this site, ok? We've become pretty good at translating Lymese - and it's one less thing for us to request of ourselves as we go thru our rougher days with Lyme.
Mary
It all sucks.
Remember also that you have had this your whole life. so a long time to treat is not unreasonalble. discuss your frustration with your doctor.
I know that 19 months into treatmnet they believe I was reinfected.
I wonder if that is occuring with you or any of your family memebers. It changes all of the parameters each time because then you are treating a different strain and different co-infections or treating co infections that you had gotten past before.
I know its not comforting thoughts but sometimes possable explanations help.
Good Luck to You.
Reading these posts, I was especially heartened to hear UW's comment about the improvement in her cognitive skills. I bet that made you feel better, too.
I also felt as if I was developing dementia. I couldn't remember movies or TV shows I'd seen the night before. OK, most of it's meaningless, and easily forgotten anyway, but it scared me that I couldn't remember and my husband and sons thought I was weird. So far I've just been treated for Bartonella and recently started treatment for Babesia. But I've seen great improvement in the area of memory.
I have always been a pretty good writer, but now I have a great difficulty transposing letters, numbers, hitting the wrong keys, not finding the appropriate word I want. So, we all understand about the "spelling thing."
Julie had a great comment about the possibility of being re-infected. Silly, pretty obvious, but it didn't occur to me. I just skimmed in a special Lyme Times magazine I bought (put out by CALDA) of a treatment for outside areas called "4 poster" that looks promising, and not terribly toxic to the environment. It is bait for deer that will kill the ticks after the deer eat it, similar to the stuff for dogs. Maybe something you want to look into.
I don't know how long I've had this- my LLMD thinks a long time. I've only been in treatment for about 8 months. But I'm impatient, too- I can't only imagine being in treatment for years, but as Lymie said, this disease does teach patience. And humility.
When I'm feeling down, I try to focus on how happy I am to have been diagnosed. Unless my husband was diagnosed with Lyme, I'm sure I (or my doctors) would never have figured out what was wrong with me, as I wasn't as overtly sick as was my husband.
Perhaps share what you've done by way of treatment and the others may be able to give you suggestions/ feedback?
You're only 38! You have so much life ahead of you! Try to get yourself outside this weekend- do something you truly enjoy- as someone else here said, celebrate life!
My LLMD also said you need to treat the co's first, before the Lyme. So, I guess you need to accept the fact that a few years weren't as fruitful as you would have hoped, but
I also forgot that I was reinfected on top of this year before last and got the rash that time. I was in VA. during my daughters softball Nationals. So those little suckers did get me again. thanks for jogging what little memory I have at the time. Even though I was on abx I still got the rash. that in itself tells us what we are up against.
I do trust my doctor and he is doing what alot of them prescibe so i do feel comfortable I am just so tired of hurting and hurting and putting on a fake face everytime we go out.
Once again thank you all for being there for me and making me feel better. I pray for all of us and hope that we can all recover as quickly as the Lord allows. I hope that you all have a blessed weekend:).
I go back to the doc. tomarrow. Wish me luck :)