Lyme

Hi Just found this site. How wonderful to communicate with people that are going through the same situation as I. It so very much upsets me, thinking of so many people suffering from this and the majority of health care system not even recognizing this disease. Being a medical professional myself, this has made me feel very betrayed by our health care system. My story, which i'll summarize the best I can. Never presented with rash, but had symptoms of blurred vision, memory loss, hair loss, and joint pain over a 3 month period. Seen by family doctor and I was given a treatment for each symptom I presented with, but no diagnosis. One year after the inital visit developed cardiolyme, hospitalized for two weeks, placed on atb(doxyc) for one month which after that time the doctor managing my care told me to go and enjoy my life, that I was cured. People tried warning me to stay on atb long term but when I questioned my doctor about it, she said "no way, don"t listen to anyone, theres a lot of crazy people out there". We'll after several days I decided to place my faith in the doctor who was working in the most prestigious hospital in Ct. What a mistake. I ignored all the "crazies" and placed my faith in our medical system, and continue to live being upbeat and positive person. Two years ago I began with neurological problems. Seizures, more memory loss, blurred vision, and my symptoms just keep growing. Right now trying hard to boost my immune system, my bouts are more and more frequent, and I feel this illness is taking over. Can any one give me any suggestion. Treatment? Good Doctor in Ct? Is this curable? Someone please help.....Thanks

HI DeeG!!
Welcome to our forum!!! I am so sorry for what you have been through - it's tough enough to get through all of the things without feeling betrayed on top of it!! I'm sure you will find us a caring, helpful, and diverse group. We come from all walks of life. The absolute best thing I could tell you would be to read, read, read!!! Start with the thread at the top of this forum titled "New to Lyme, Start Here", as it's packed full of info that we have put together specifically to help out those who just found out they are dealing with this disease. Then read as much as you can on tick-borne illnesses.

I am not medically trained in anyway, but I have lived with these infections for many years now. I have tried abx - Mino - for a full year when I first had the infection move into my brain, but I got so sick from all of abx that I ended up bedridden for a time. I am now using herbs, homeopathic remedies, acupuncture, and supplements and am starting to make some head way. The 'cure' for each person is as unique as the individual, as we all have our own bodily 'weaknesses' and this is what gets attacked.

I believe that you most likely have a chronic infection. You would do best to get into see a Lyme-Literate Medical Doctor (LLMD) who can diagnose you & get you started on abx - if you chose to use abx. You could easily be infected with what is referred to as co-infections - they are listed in the thread "New to Lyme", as well as detoxing information. Your body needs help with the large amount of toxins that it is trying to deal with. You will want to be very familiar with the detoxing methods once you start treatment, as you could easily have a "Herx" reaction. This is also spoken of in that thread I mentioned.

The question of whether this is curable, or just something that can be put into remission I think is still being researched.

If you could tell us a little more about what supplements you are already taking & why and also if you are having any more symptoms or conditions that you live with (one of the things that I have is Hashimoto's Thyroiditis) - other than the ones you have already mentioned - we might be able to make a few suggestions.

I do hope this helps some...

May you find peace along your journey to health.

Trav

Hi Dee,

Yes, your fight has begun. I wish you not only luck but the strength it will take to get the better of your disease.

Like you, I had a whole host of ailments that I lived with and was inadequately treated at one point. It was when I really started to lose my mind that I finally got help. I had two years of antibiotic treatment and was off the antibiotics for all of about a month before I got bitten again! So here we go again.

Is this curable? They don't have a way to prove that it's cured, but I can tell you that for that brief month, I felt great and all my symptoms were gone. What a feeling.

Yes, even the neurological problems were gone. The body is amazing in its ability to regenerate.

I hope you find the right doctor soon and get on your road to full health.

Dee,
I think pretty much all of us felt as you do when we were first diagnosed and/or came here. It didn't even dawn onto me that I wouldn't get cured almost immediately once I had my long-awaited diagnosis. After being on antibiotics/supplements for nearly a year and now just on supplements and pain meds for the last several months, I'm doing much better, but not cured. We're all searching, and once in a while someone will come back on and say what helped them to go into remission/get cured, but even that won't help everyone because it's probably a combo ot things that finally did it. There is no one answer unfortunately. If I get worse again, I'll try Dr. Jernigan's at home therapy (related to the Hansa Center program that you may read about on this forum). I've spent enough money and feel like I'm doing OK right now, so I'm saving that as my "big gun" if necessary.

Thank you for the words of wisdom. I know deep down that I do need to get help and fight this but I truly don't know where to begin. I have calls in to LLMDD's but no call backs yet. What do treatments consist of, the more I read the more confused and frightened I get. Have you ever been in a fog like I. Take Care
Dee

Hi Grace,
Yes, I have my husband and family behind me now, after seeing me progress this last couple of years. Every time I was hospitalized, and there have been a lot, and I brought up the lyme disease, they looked at me like I was crazy. They told us that the AMA doesn't even recognize chronic lyme. This came from highly regarded doctors from Yale,which we had the utmost trust in. They said don't listen to the crazies out there. There is no such thing as chronic lyme. My husband was convinced but I always questioned, then what is going on with me. I wanted to believe them so much, I became more confused, eventually felt better and really just wanted to believe it was going to be ok.

I feel a sense of urgency now because more symptoms are arising, like times of blurry vision, unable to focus, loss of balance, and periods of muscle burns on left foot and fingers, loss of smell and taste. not to mention another partial seizure. Also I only had to deal with feeling bad once or twice a year, now I getting sick or symptoms more frequently. Did you ever hear of or have any of this or am I truly going crazy?

'm I still waiting anxiously for Dr call backs.

Grace, what bothers me most is not how this has changed and affected every aspect of my life, but how our medical system refuses to see the urgency of this manner as more and more people become sickened with this. They even refuse to recognize that chronic lyme even exist. Do we have lobbyist out there? Why aren't these LLMD"S speaking out on our behave. Why can't we pull together and let our voice be heard. It totally infuriates me.

I guess I better save my strength for the fight ahead of me. The fight to get well. Thank you for your time and help. It is so nice to have someone to talk to that can relate. God bless and stay healthy..................Dee