Months to diagnose yeast after 13 months of abx. A gradeschooler could figure that out. Well, maybe not.

NCLyme,

Sorry to hear about your experiences. While I am certainly not qualified to offer advice, I think I would try to get back on oral antibiotics - as doing nothing might not help you get rid of this disease.

As for the stamina, I strongly believe exercise (if only walks around the house) is a must to get the immune system back up to fight the disease. In addition, it will help your mental side as well.

I see dr J as well. I don't think I have cronic lyme - i started getting treated about 6 months after the tick bite (which I got in Durham, NC). He's been very good to me - and his treatment seems to help.

Sorry I'm being so blunt, but I'm asking for help on my illness, not a trite answer to join a sports team and get out! I was an aerobics instructor for ten years before succuming to this illness and I was also a personal trainer and an aggressive tennis player. So, believe me, to hear someone tell me to get out and join a sports team is a HUGE insult and a kick in the gut.

Sorry you are feeling so bad. Late stage Lyme is the pits! I'm with you, team sports are WAY out of my league.

Sounds like you were only treated for about a year with antibiotics, is that correct? I'm like you, long term infection, sick a very long time before diagnosed, no tick or rash, but positive Ignenex tests.

It was a very long time on antibiotics before I started to feel any improvement. If I hadn't been keeping a diary of symptoms, I might not have realized some of the things that were improving. Last fall, at 1 1/2 years into treatment, I had a serious relapse, and am just climbing out of that.

From what I hear, this is not at all unusual. Long term infections have had plenty of time to worm therir way into protected sites in the body. They invited all kinds of friends to come in and coinfect your body, making it MORE hospitable to them, and less to you.

It takes time, patience, persistence, and a good doctor, or several, to get through this illness. Some people take two, three, four, five years of treatment to recover. They have to shift protocols, and doctors. Some alternatives work for some of them. Very few can take a path exactly like someone else.

It does sound like you could get more treatment. I can't tell if you are not wanting to take more antibiotics, or if the doctor somehow thinks you shouldn't. I know taking meds isn't fun, but neither is untreated Lyme.

There are lots of protocols to try. Maybe not so many doctors, but there are a few. If yours isn't working for you, and you can't figure out how to make it work, maybe you have to make a change.

You may have to travel, from where you are. But I think it IS possible to get better than you are now. I can't promise, but I do think it is true.

Team Sports!! Wow..if that was a cure..all the athletic clubs would be full. I use to be an avid swimmer 1/2-1 mile 5 times a week. Now in my chronic lyme...which is only getting worse..I am lucky to see my shower 4 times a week. My energy level and overwhelming fatigue takes all the strength out of me.

I has made an appt with DR J, but changed my mind and I am going to Dr C in July for my 1st visit with an LLMD. I think I am very glad that I changed my mind even though Dr C is harder for me to go to. I got sick in 1972...docs did not know Lyme then...and it wasn't until 2001 that I got diagnosed. The 4 yrs since then have been up and down and now just down most of the time.

I could not join a sports team or even a checkers tournament at this time. My mind, body and soul are exhauster. I know exactly how you are feeling. And, yes, Dr in NC should have know about the yeast infection...please find a good LLMD and keep us posted.

I am so sorry that you are feeling ill, blue and confused...not a pleasant combination at all!

I am also a patient of doc J's, so if you would like to chat via email, I would be happy to write back, OK?

Riversinger is correct about the amount of time and patience that it takes to lick long term lyme. There is no easy or fast cure unfortunately. Usually, the longer that you have been ill, the longer it takes for some relief.

I just wanted to pass on a bit of hope to you...
I was first infected back around '88, finally diagnosed in '03, and am now about 80% back to good!

About a year into treatment, I took a sudden nose dive for the worse. It wasn't the doc, or the meds, it was just that I was sicker than anyone had realized with a hidden Bart infection. Once that was addressed, I slowly began to regain some semblance of life again.

So, I always think, that if you have been in treatment for awhile, and don't see the improvement that you had hoped for, the first step would be to suspect hidden co-infections.

There are some good doc in NY...let me know if I can help in that area, OK?

Hi Jackie,

Have you been tested or treated for Bart? Swollen Lymph nodes are a big symptom.

My best,
Melanie

I agree with you and have experience all the problems in dealing with that particular clinic. However, you should understand that this doctor is the only doctor in North and South Carolina that is openly treating people on a large scale with lyme disease. He has some 1000 lyme patients, of whom over 100 come from the midlands of SC where I live. I live in Hell, by the way, aka as Columbia SC. The problem is he is swamped but if people do not go to him there is nobody else.

In SC if you openly practice the treating of lyme disease there is the very real possiblity that you will lose your medical liscense. This is to say the least bizarre. But the CDC and DHEC, the department of environmental control have said there is no lyme disease in SC and so when people go to the ducks with a bull's eye rash, the tick bite and the whole nine yards, they do not get proper diagnosis, are told there is no lyme in SC, and of course do not get treatment or the wrong diagnosis.

As for the IV meds, I went through 8 months of hell, was sick as a dog, developed colitis, from which I have not recovered and all the rest of it. The problem is the doctors themselves do not know what to do.
As Dr. J told me one time: "We are twenty years away from a complete understanding of this disease." So it is a frustrating situation for everybody. How you even begin to keep 1000 patients straight is beyond me, not to mention all the AIDS patients he has.
He is at least doing something very courageous by treating lyme people at all.

I do not wish to minimize your frustrations and problems. But when you understand a larger picture it may help in some degree.

As for exercise, I am an exercise freak. I do not know just what you can do but at least try to do a little something. I walk, swim, ride a bicycle. There are times when the pain is so bad I have had to get out of the pool. I have been so exhuasted that I have wanted to fall asleep in the street. But if you can exercise, no matter how little, no matter what-a few yoga postures-it will help. I am convinced that if it were not for my exercise mania that I would be a bed ridden invalid or dead.

Besides exercise gets oxygen into your body. Boris and Myrtle (Burgdorferi that is) and their 11 million off spring and relatives, who are currently living in their little love nests in the lining of my stomach, my brain-the stump of which is left-and all the rest of it, HATE OXYGEN. So my theory is you give me hell, I give you hell. So I am going to expercise like forty hells, even if I drop dead in the street. At least by going down fighting the microscopic swine I can keep my sefl respect.

To Thomas Parkman: believe me I do believe in Dr. J., but the frustration is not directed at his lack of caring, but the fact that he is the only MD around that cares to carry this load. It's not fair to him or the rest of his staff. He has a wonderful staff, but they are overtaxed. He is the only one who correctly diagnosed my condition, however, after going off the pic-line and taking my $50,000, I am definitely not an important patient anymore. He is a business man as well as a physician. His piano-playing CD with contributions going to AIDS is wonderful, yet a little self serving and I personally would rather have him in the office seeing patients instead of in a recording studio or meeting with architects about his new fancy building.
I have a connection with many doctor's in the Cornelius/Huntersville/Mooresville area and they truly are counting on him to be their Infectious Disease specialist, and I truly think that there are times when his self promotion gets in the way of treating patients. His nurses are wonderful, but they are nurses, not doctors. I don't understand why facilities such as his can't train other Infectious Disease doctors to enter his arena. Is it that he would have to share a bigger piece of the pie? I could write four pages of incidents that I have had with that clinic, but as you know so well, there is no where else to go. Now, of course they know that as well - right? They have been excellent at times, and really horrible at other times, so ... I put up with the bad and thank God for the good.
I want to get better. I try to exercise when I can. I use an exercise band and weights and I swim, walk and will bike this summer. Exercise is definitely not the answer to all my problems and I truly wish people would get off my back about it. I do what I can and I listen to my body.
I think that I am having a Lyme Rage and I don't mean to aim it at anyone else - although I am.
I would love to have a better support system in North Carolina. There used to be a Lyme Support meeting, but I was too sick to attend. Maybe I could do it now. I think that the clinic should provide that and I think they should provide networks for people to get together and exercise or learn about nutritient, etc. I asked how I can lose the weight I'm on, and their registered dietician handed me the South Beach Diet. I find that irresponsible. As I said, I could write four pages, but will save that for my book.

Last December I could barely lift my arms. I tried to exercise but couldn't do even 3 leg lifts. Doing more was absolutely impossible.

Finally I tried some of the very easy supported yoga poses in the relax & renew book. To my surprise it made a huge difference. Just trying to move the pillows was a monumental effort but I did it.

3 months later I was out skiing. Now I have had to cut back on exercise again. Light weights seemed to bring on all sorts of joint pain. If I use the ski machine I won't have enough energy to work. I do make efforts to go for walks each day.

Each of us has a unique experience with this crazy disease. We each have to listen to our own bodies and keep adjusting to what we can or can't do on any given day.

I started Biaxin & Plaquenil 1 month ago. I'm feeling much better on it. I have more energy & less brain fog. It has brought back some old symptoms though,particularly knee pain which comes on suddenly & severely and after a little while disappears.

That said, we are awaiting a diagnosis for our ten year old daughter. She sees the NP at the same clinic you go to. She was very compasionate with my daughter.

She is pretty certain our daughter has lyme.
We should know in three more weeks, (we've waited three already, but who's countin').

I was wondering if you could tell us all a little more about your symptoms?

Maybe the folks here at lymenet could give you some ideas about how to get your immune system working better to fight the little spiro-boogers!

I hear that your chief complaint is exhaustion. It sure has taken the wind of my daughter's sails!

Her exhaustion comes and goes, kind of like CFS, here one day, gone tomorrow. She can't walk one day, but can the next. When she overdoes it you can really tell.

Poor thing doesn't know her limitations as a child. She wants to do everything like she always did it before lyme. She just danced in her seven year dance recital! Yay for her, she did it and in step, too! I am so proud of her, can you tell?

I think everything in moderation must be key. You have to build up to any form of exercise whether you have a disease or not, right? So I think when you have a chronic disease such as this, baby steps are key here.

Setting goals that you feel can be met and kept are better for you both physically, as well as emotionally.

What is the point in setting a goal of climbing a mountain on a day when you feel you can barely turn over in bed? Imagine the frustration.

It sounds like you are doing great, doing some swimming (that is good low impact exercise, easier on the joints) and walking!

I think it is key to listen to your body. Hello? you're the only one in it after all! (tell your nutty buddies that are on your back about exercise, I said so!)

For your biking this summer you might want to try the downhill trails ei: The Virginia Creeper Trail and the New River Trail, if you are up for the traveling.

We just did the Virginia Creeper with our daughter. Great time, beautiful place, easy downhill ride, very little work and the kids love it, even the four year old! WEAR YOUR TICK REPELLENT, PLEASE! HA!

Back to your immune system, I think a "good dietician" maybe can help. A friend of a friend went to a dietician that is located behind the Bob Evans restaurant off of W.T. Harris Blvd. Would you like me to get the name?

She said her friend was eating her way around her kitchen trying to find the right food to satisfy her body's needs. You know how your body gives you signs you need certain nutrients? I have done this before that is how I know!

Her friend gained quite a bit of weight and it turned out that she was eating the wrong things while trying to find what her body needed.

This dietician told her the nutrients her body needed and since she has satisfied it nutritionally she dropped all of her weight she gained!

Maybe she could help or maybe a good homeopathic doc affiliated with a chiro practice could satisfy your needs? Anybody on here know of a good one in this area?

I have been learning that natural medicine coupled with your LLMD can be the arsenal you need to kick lyme disease tail!

For instance, some on here take glucosamine for their joints and say it helps a lot. I am going to look into that for my daughter.

Lymenet is a wealth of info. As I said earlier throw your symptoms out here and see what happens.

You may even want to focus on certain symptoms and do different posts for them and see what you get back. The people here are great!

Email me using the little envelope button at the top of my reply if you like. I would love to talk to you further. My family lives near the Mt. Holly-Huntersville/Hwy 16 intersection, just down the road from you!

I would love to help you however I can. I too think a support group would be great. My daughter probably has an interesting perspective to share with your children!

Take care and chin up, things are bound to get better now that you have landed on this site! I hope to talk to you soon!

The problem is that the medical racket has just shut down and will not open back up. Doctors who treat lyme patients in SC run the very real risk of losing their liscenses. I know of one tragic case of a nuerologist in Seneca. The good old boys more or less ganged up on him and destroyed him. They were very clever about it and very, very nasty indeed. But hey, this is SC. These people know a few tricks that even Joe Stalin never thought of.

did you let his insurance people handle the insurance problems, or did you? did he go to bat for you? did he follow thru? did he give you copies of what he sent to insurance co? these are all important questions and need to be answerered. call you insurance co dont let them handle it.
we have to be proactive with our disease...even with the best of dox it helps to find out all you can and do the most you can.
while you are waiting for the answer, find someone else.

thomas, you can get better but you may also have to travel somewhere else.

Now, I expect for this post NOT to be edited I have not spoken a bad word, nor lied, nor broken any rules. I know that sometimes people get censored here, but lives are at stake. so leave it be.

A little bit of exercise might be okay but not heavy duty. I've been a skier for over 30 years and was a ski instructor and did ski patrol for a while. There is no way I could do what I used to do.

The recumbent bike which is a sit down bike has worked wonders. Windsor pilates has a 20 minute workout that works great for me. Some days I can walk and other days I'm on the couch not moving.

If your not happy with your current LLMD you could see another doc but like Melanie said, these docs are doing the best they can and we are a ways off from having a cure for lyme.

Shocking to hear you say your doc isn't telling you what to do now...that's why we you made an appointment.

Hope your feeling better soon!