i'm having a rough time. I found out that I had Lyme Disease nearly two years ago. The only symptoms I had (pre-treatment) are anxiety, depression, insomnia, night sweats, and a few other things, but nothing that was really disabling.
The anxiety and depression were terrible, but on an anti-depressant, are under control.
Now I am in treatment and seeing who I believe to be one of the very best doctors in the country. I did not start with him though. I have been with him since December.
In the last 18 months I've gone downhill. I have developed new symptoms and feel exhaustion like I have never felt before.
I am diagnosed with Bartonella, babesia, lyme and now find out I have off the charts levels of aluminum in my system, and elevated levels of mercury and lead as well as dysfunction of my adrenal glands, low vitamin levels and I'm anemic.
All this time that I have lived with all of this, I never felt terrible. But now that I am in treatment, I could not feel worse. And I've had a picc line for four months, done lots of detoxing, been of orals for nearly the entire time I've been in treatment and have seen ZERO improvement.
I am just feeling worse and worse.
My husband is so concerned. it's hard for him to see me, a former runner, biker, skier, have such low energy.
he asks, wouldn't you have just been better if you never knew you had this thing.
I am starting to agree. How long can it take for me to see even any improvement. 18 months and just geting worse and worse, despite following all doctor orders exactly, eating what he says, taking what I'm supposed to, getting plenty of rest, giving up all sugar, alcohol, etc.
I'm beside myself. Anyone start out this slow. I am scared I will never get better or even back to where I was before I found out I was sick.
it's very scary
Posted by Karen Mc (Member # 23354) on :
Laura, All I can say is hang in there. I too got VERY sick and started seeing a LLMD last April. I also have Lyme, bab and bart. It has/still is a very long hard road.
I am JUST starting to see some improvement. I know sometimes its easier to think...I wish I didnt know about this but TRUST me it would probably have caught up with you sooner or later. Looking back now, I realized I've had lyme at least 20-25+ years. After getting reinfected in 2008 and 2009 it was too much and finally caught up with me..
Even though this last year has been [email protected]#% and I have gotten worse, while trying to get better I am sure IF I had only know sooner I could have possibly avoided much of the pain I have suffered.
So, please hang in there...
You say you're seeing what you think to be one of the best doctors ---is he a LLMD??
Good luck and I will be praying for you.
Posted by WildCondor (Member # 434) on :
I sent you a message !
Posted by lpkayak (Member # 5230) on :
Posted by laura_from_nh (Member # 18885) on :
Thanks everyone for the words of encouragement. I should have mentioned, yes, my doctor is an LLMD (in NY state). He's one most people know as a former ILADS president, was in UOS and Cure Unknown, is continually speaking at conferences, etc.
I have the utmost respect for him and from the day I met him knew that he's devoted his life to helping people like me and you. He's certainly the most caring doctor I have ever met. If I had gone to him from the start, maybe some of these feelings of frustration would not be there. But I didn't because he was not accepting new patients so I went through a couple of doctors before finally getting to get in with him.
His approach of finding out what is wrong with a patient on a whole (not just the infections they have) makes the most sense to me. I guess I never realized how much more they would find to be wrong with me. It's a wonder I was even able to function given all I know now.
I think what is at the heart of my frustration is that despite doing all I am supposed to, I now have candida. I eat right, take 3 different kinds of high quality probiotics, gave up all sugar and dairy, alcohol, etc. and yet the yeast has taken control.
So now that's something else to add to the list of problems. I am scared of eating as I don't know what will make it worse. I already have a terrible appetite (due to the treatment) so add in this new fear, and it's becoming really upsetting. I am already a thin person and have lost 10 pounds over the last couple of months, which I know is not good for me and for fighting an infection.
Finding out I have this aluminum overload means no more real deodorant. So now I am sweaty and smelly by the end of the day. The yeast has made me breakout so I now am covered with a rash of pimples all over my back, my neck, my chest and face.
As for my symptoms, really the ones that are worst are the ones that I think are caused by the treatment. Lack of appetite, nausea, and fatigue. Symptoms I have always had and that persist and are especially bothersome are ringing in my ears, insomnia, depersonalization and extreme sensitivity to light.
From my understanding all the drugs I have been taking are meant to target this stuff. I have a follow up in two weeks. I guess I really need to start addressing my concerns. But from what I hear about this thing is that you need to be patient. I try, I really do. It's just tough when new things rear their ugly heads, like yeast and horrible acne:(
Thanks for everyones kind words. I hope you are all improving and keeping a positive attitude. I do know how important that it. It's rare I get down like this, but sometimes there's just so much a person can endure without feeling an effect from it.
Oh and OptiMisTick, thanks for the suggestion about reading light things. I tend to read all the lyme books i can get my hands on, and watching the upsetting news of the world. maybe some comedies need to be in my future to fill my mind with some fun stuff.
Posted by DJP (Member # 5893) on :
laura, Hang in there. I was like you before lyme as well. I used to run every day or every other day, worked out, hiked, biked, skied...had tons of energy to do anything. Lyme really knocked me on my $ss. It is a tough, tough fight, but you can do it. One of the hard parts for me was being a runner and not being able to run. Running is my stress release, I feel better when I run, I sleep better, I mentally feel better... You are seeing one of the best docs, so stick with it. No you are not better off not knowing because you knew something was wrong and the longer you wait the harder it is. I did oral antibiotics for about 18 months, took a break and recently did 6 weeks of IV antibiotics. After the IV I was able to run for a short period, but for some reason I can't again. I get horrible headaches so I'm checking into that. It honestly took me 4-5 years to get through this. I used to cry when other people told me that, I didn't think I could make it, but I did. I also had 2 kids sick with it at the same time. A 14 mos old and a 2 1/2 year old. You will get better, keep pushing through the treatment, it's like running, keep pushing to the end.... Don't make yourself sick by overdoing it though. Just do what you need to do to get through the day. Working out will eventually come back. Do what kind of exercise when you can. If I could even go for a short walk I would. Most days, that wasn't even possible. I would make myself worse trying to push myself to run, don't. If you're not well enough scale back...hard for runners to do. It was the same for me, I felt worse at first, got more symptoms, even got the same psycological symptoms, sensitive to light/noise/sound, horrible migraine like headaches, insomina, weight gain, weight loss all sorts of weird symptoms.. We had to close our business, Lyme put a huge stress on our marriage (most men don't get it and aren't caretakers and sex...my drive completely disappeared), I feel like I missed a huge part of my kids younger years and fear they will only remember me as a cranky, tired person. It was the worst thing I've been through, but I made it and so will you... It's okay to feel down when you feel down and when you are ready to get up and go at it again, go for it. Surroud yourself with people who understand and support you. Ignore those ignorant comments from people who just don't get it! Focus on you and fight with all you have. I went skiing several times this year, I'm leader of a Daisy troop that has 20 K and 1st graders in it. I've taken them to a gym for a work out. I do yoga, walk, easy bike rides... A year ago, I never would have dreamed I'd be doing any of this!!! I'm not 100%, but I'm working on it. Hang in there.
Posted by LightAtTheEnd (Member # 24065) on :
Also remember that feeling down can be a physical symptom of your illness, as well as being a natural emotional reaction to coping with the whole nasty, unfair mess.
That's another way Lyme & co try to trick you into giving up on killing them--make you depressed so you want to give up treatment.
Don't let it win.
Posted by TF (Member # 14183) on :
For deodorant, use Ammen's Medicated Powder.
I think you'll really like it. It is all I use.
And, rent or borrow from the library some funny movies. When you feel lousy, it is time for a funny movie.
Try "The Man Who Knew Too Little."
You have only been with this good doctor since December. So, try to look at it as you only started getting good treatment as of December. Prior to this, the treatment was inadequate and, therefore, the disease could continue to progress.
That won't be happening anymore.
You have been on good treatment 3 months. So, give it a little more time.
Many others have had similar experiences to yours--having inadequate treatment before getting really good treatment.
Posted by Robin123 (Member # 9197) on :
Sorry you're having such a difficult time. Others here have written well about hanging in there.
Couple things - 50% rubbing alcohol works fine for deodorant.
Noncandida diet - after reading about what it is and isn't, I suggest a stepdown - first no sugar but eat sweet fruit, then no sweet fruit and go for the vegies and lean meat and nuts and seeds.
I took tiny sugar breaks while I was on it. Like have a small amount of ice cream once a week kind of thing, but don't overdo it, or you'll be right back with the candida.
I liked doing the diet while I did it. No more sugar cravings.
I was able to end light sensitivity and all Lyme eye symptoms by drinking mangosteen juice, an anti-inflammatory antioxidant juice. There are lots of brands in health food stores and online. I drink the Ultra brand, with 70 minerals added. If you try it, go slowly and drink a lot of water too.