I am about to begin a year long battle with Classic Lyme, Bartonellosis and Babesiosis. I am working with one of the best LLMD doctors in MO. BUT, of all my research on Lyme I don't see anyone saying "yes I had it but I am completely cleared of it". Before I spend big money on treatment I would just like to know if anyone out there is "free" of this hell. Thanks.
** edited to remove city **
[ 05-30-2010, 08:51 PM: Message edited by: sixgoofykids ]
Posted by Parisa (Member # 10526) on :
Sarah,
My husband had a very bad case of Lyme and Babesia and treated intensively with a year and a half of IV antibiotics after oral treatment failed. He's at about 95% of normal and has been off all antibiotics for four months now.
Will it come back? We don't know but we're definitely enjoying today as yesterday was a nightmare.
Posted by sutherngrl (Member # 16270) on :
Yes I can think of at least 8 people that I personally know completely lyme free and living normal lives.
Remember that most ppl that are better are not hanging out on LN!
Posted by sickpuppy (Member # 23846) on :
My mom knows of one person who treated and never looked back. I know of one who, so far, is in the same boat. So that makes 2 more.
Posted by Brussels (Member # 13480) on :
I'm lyme free for 12 months, entering my 13th month in June. No treatment, no symptom.
My little neighbor (boy, now with 9 years old) who got an EM rash during winter some years ago, never had a relapse (he had it months later after tick bite, so I wonder where is he in the classification 'acute', partially spread, or chronic). Acute, it was not.
I can't remember how many years ago that happened, but he's fine so far. Never got re-treated, that I know.
My daughter is also now without treatment for about 5 months. Living an normal life, very active.
Posted by sixgoofykids (Member # 11141) on :
I am better. No symptoms. No treatment. Went into remission last August. Normal life, in fact, I teach pilates and bought a new bike, so a very active, normal life.
Posted by TF (Member # 14183) on :
It is 5 years since I completed my lyme treatment and I am still symptom-free, enjoying my life. It is the same life I had before lyme disease.
I went undiagnosed for 10 years. I had lyme, babesiosis, and bartonella.
I don't take any meds, or supplements, or do anything to keep lyme away. I even got steroid shots in my spine a few years ago and lyme still did not come back.
So, I got rid of all of these tick-borne diseases.
I have at least 5 friends who have gotten rid of it also. Two had it for maybe 20 years, misdiagnosed as fibromyalgia. They all went to the 2 Burrascano type doctors I recommend.
The doc is the key to getting rid of this disease. I can't emphasize that enough. The doc is the key.
Many doctors treat lyme disease, but not many can get rid of it for people. I recommend you only go to a doc who has gotten rid of lyme for at least 3 people. Check with lyme support groups to find out this kind of information. (See "Support Groups" on left side of page.) You can ask on this board also. Just use first letter of doc's last name and state he is in.
Posted by seekhelp (Member # 15067) on :
Listen to TF! Don't waste time with docs that don't know what to do!
Posted by lightparfait (Member # 22022) on :
I am clear now for over a year as well as my daughter. I agree with those who recommend going to a LLMD who has had success for many without relegating patients to long term abx.
Also know that those who get lyme symptoms...have way more than just lyme prior to this. There are other more pressing things to clear ...that enable lyme to leave. Learn what you can from others who have had success...as most will testify like me, that clearing the body of debris, toxins, candida, parasites, and chemicals /heavy metals...in order to get a balance back...is key to regaining health. IT sets the stage for treatments to work.
It doesnt have to be perfect...just balanced.
So I suggest, work with your good LLMD...clear the co-infections..then work on detox with taking some binders to capture the dead bugs, biofilm etc...renew your mineral inbalances with a good multi mineral (liquid)....work on healing your gut so what you take can be absorbed...check for those parasites that ususally come with all this...and possibly do the allergie Immune therapy...which helped my body regulate...one thing at a time...little by little...hopefully your llmd can direct you. Lymenet friends can help too...read the posts and ask questions.
along with this start thinking as positive as you can...as the mind controls what the body will do...either heal or stay in "lymeland depression". IT took me a year to learn this...as I worked on freeing myself of living in lyme...all the things I was doing began to work toward healing ...as my immune system finally took over naturally.
IT is more than possible to regain your health! For me...I now can say that getting the lyme diagnosis is what saved my life!!!
best wishes...hang in there....
lp
Posted by Keebler (Member # 12673) on :
- Sarah1001
You say you are about to begin a year long battle. Depending on how long you've had infections, it could be longer but, yes, there have been success cases.
The park ranger who did so well in the documentary "Under Our Skin" did not have appreciable improvement until after three years' treatment. Some see a big turnaround in a year or two. And, for brand new cases it can be quicker.
A lot depend on so much, though, so be sure to learn all you can about good self-care and supportive measures.
Also, remember remission is the word of the day. There is no cure for lyme, at this time. However, it is absolutely possible to reach remission, even long-term. Then if you have flares, quick attention should set you right again.
Edited for Correction: he is not with the same doctor as you. I thought it was but, still, he is doing much better after about a year so you may be interested. ---------
WICHITA MAN STRUGGLES THROUGH LYME DISEASE DISASTER
Sunday, May 23, 2010
A Wichita man is making his fight for life public in order to raise awareness of lyme disease. Lyme disease is spread through ticks, but many doctors don't recognize it as a problem in this part of the country.
His name is Bob Reichenberger. Right now, Reichenberger is an active police detective. He is fit and in-shape, but the last year of his life hasn't been so pleasant.
"It was about the end of June, '09," Reichenberger explained. "I was out in pasture and I noticed on the way home that I had a couple ticks on me."
Within a few weeks, Reichenberger began noticing tremors in his chest and arms, as well as muscle spasms. Then, intense pain in his feet.
"I'm healthy, I never have to go to the doctor," he said. "I just thought it had something to do with being a 40 year-old guy who's active and physical. I've had some sports injuries, so I blamed it on that."
But this story isn't about ticks or Bob's lyme disease. The story is that after months of suffering to the point the disease nearly killed him, eight doctors refused to test him for Lyme.
Instead, Reichenberger was told he was suffering from severe depression. He was even accused of being a pill seeker. By November, Reichenberger went to his doctor and told him he thought he was dying.
"They were turning me away and I felt helpless, so I started crying and she laughed at me and walks off," said Reichenberger as began to get emotional. "At that point, I was so hopeless I couldn't be angry. I walked out to my car and cried for about half hour."
In December, Reichenberger had a seizure at work and collapsed. He was admitted to the hospital. That's when he started pulling his own medical records and discovered his doctors wrote that he needed to seek psychiatric and behavioral help. He was appalled. The tougher struggle, however, was watching his children suffer.
"They were starting to have emotional issues. My 18 year-old would literally have to carry me to bed at night," Reichenberger said.
After a short pause to calm his emotions, he continued.
"I couldn't stand to be in the dark room, so I would have him help me out in the front room so I could be with the family unit, but I felt being around them, I was bringing them down."
The infection had spread to his heart and lungs. Reichenberger was in the fatal stages of the disease. One day in December, he fell to the floor in his own living room.
"At this point, I'm thankful that it's over," he said. "I love my family with all my heart, but I was glad it was finally over and I was just waiting for everything to go dark and to be finished."
Reichenberger was ready to die. He told his wife not to call an ambulance. He didn't want any more doctors. He didn't want help from the people who didn't believe him. He wanted to pass away and allow his family to move on.
Fortunately, Reichenberger survived that nearly fatal episode. During his research, he discovered an LLMD - or Lyme Literate Medical Doctor - in Missouri. He went there and finally convinced someone to give him a Lyme Disease test. He was finally diagnosed.
Today, Bob Reichenberger is a police detective in Wichita. He is mostly healthy and pain free now that he is getting the proper antibiotics to slowly kill the bacteria that nearly killed him.
Reichenberger has since found other people who live within walking distance of him who have gone through the same ordeal... a problem he says is unacceptable.
** Nutritional Supplements in Disseminated Lyme Disease **
J.J. Burrascano, Jr., MD (2008) - Four pages
-=============
Good luck. I hope your treatment is fantastically successful. -
Posted by Lymetoo (Member # 743) on :
I've been off abx for 5 1/2 yrs now and doing well!!
I would be cautious about spending big bucks in KC, however.
I was treated for 4 yrs by an LLMD in MO who is not expensive and can get you well.
It took me 42 yrs to get diagnosed and treated...so you CAN get well!
PS... There's a Success Stories link over in General Support. I'm unable to bring it to you due to a computer glitch. It's about the 3rd thread down.
Posted by needleseye (Member # 6037) on :
In 2004, I had classic lyme symptoms and was treated for about 8 months by a LLMD. He pronounced me cured and I've felt fine ever since.
Posted by Haley (Member # 22008) on :
Yes, I know people that had Lyme for many years and are now 100% after treatment.
Posted by bcb1200 (Member # 25745) on :
Thank you all!! SOOOOO IMPORTANT TO HEAR!!!
My biggest concern is whether or not I have the right doc. I think I have the best in Mass and she seems to know her stuff (even said Burrascano's 2008 bible is "a couple of years old.")
But As others have said I don't want to waste time. I want these bugs dead and out for good. I'm checking out either Dr. H in NY or Dr. M in CT in July for a second opinion. I don't upset my current doc, though, as I need her.
Day 20 of treatment for me. Off to take my Doxy.
Posted by janice victorov (Member # 22937) on :
Yes, so important and need to hear. Especially this morning.
My babs is kicking my butt. It's hard to deal sometimes. I know I'm getting better but its such a slow process as all of you know.
I read the above posts and if people that have had it longer than me can kick it, so can we!!!!!!!!!!!!!!!!!!!
Take heart all and follow the doctors orders and we, you, everyone can get over this. Posted by lightparfait (Member # 22022) on :
Also...after following your LLMD's orders and dong treatments for 1-2 years max...if you have not improved...than that particular "cookie cutter" treatment is not working for you totally.
Those who moved forward mostly did individual treatments and worked with LLMd's who know how to tweek the treatments and change and try other things.
Also, know when it is time to detox!!!
Many good LLMD's do not fully understand how to detox their patients. They know how to kill the bugs...but have difficulty with the left over debris or pre existing toxins...and do not know how to recognize them or treat them as toxic symptoms can overlap with bug symptoms. Then some patients end up on long term abx...just to keep symptoms at bay and cannot get off abx as they havent detoxed during and after treatment.
So know your own body and know when your body is saying "ENOUGH" to the drugs. Know when it is time to detox...and find another ND who undertands lyme and detox...who can guide you individually.
Posted by janice victorov (Member # 22937) on :
This might be a silly question but how do you know when you really need to detox?? I know what to use and to do it during a herx but other than that, clueless!!!
Posted by aMomWithHope (Member # 19255) on :
I have the same question as Janice regarding knowing when one needs to detox...........
Posted by lightparfait (Member # 22022) on :
YOu should take periodic breaks between treatment changes...or when you begin a new med...take a break for a while in between...
Usually 6 weeks to three months will yield great detox benefits if you get off abx...and try a more natural approach to handling your particular ailments.
Also, you may be herxing not from the lyme and co-infectin die off, but from the candida/yeast/mold dies off...it is hard t know the difference unless you start to try to detox.
Best results come from clearing co-infections as the first treatments...then take a break before lyme treatment...and see if a detox will clear you enough for your immune system to fight the lyme on its own...
This can happen in stages...find a ND who understands detox to help you along.
Also during that time, while off drugs...you can begin allergie immune....which will move things along faster as far as healing.
Read the Allergie Immune thread...it is long...from begining to end. YOu will get the picture.
best wishes...lp
Posted by txgirl09 (Member # 21612) on :
bump ~ its so nice to read these stories Posted by randibear (Member # 11290) on :
six, i think i misunderstand. do you mean you are now without treatment or you never had treatment?
Posted by sixgoofykids (Member # 11141) on :
I am now without treatment, I do not need any form of "maintenance" to keep my health, though I do take care of myself - exercise, eat right, etc.
Posted by nellers78 (Member # 26774) on :
I was going to point out Lymetoo and see she already posted! I'm seeing the doctor that treated her and I've been pleasantly surprised with him, the staff and the prices of treatment. I'm brand new to treatment but already I'm feeling better than I was before being treated.
Posted by t9im (Member # 25489) on :
I've had two discussions with Dr. J as regards my daughter. She is being treated for Babesia and Lyme.
We asked him directly on will this be cured and he commented (didn't state) that his findings are the bacteria is erridicated.
The bad news is Babesia is a minimun of 8 months and his patients average 3 years of treatments.
I've met two of his ex patients where the parents are extremely appreciative of his efforts and treatment of their children.
A third parent, the daughter, stopped taking the meds too soon and is back under his care.
Posted by sixgoofykids (Member # 11141) on :
Yes, my babesia took about three years.
Posted by kimmie (Member # 25547) on :
Great post, thank you so much!
I asked Dr J the same question in regards to my child. He told me the same thing, it is curable. This man has treated over 10,000 children so I trust what he says. He also said 1-3 years is an average of time needed for treatment.
It is hard to see "the light at the end of the tunner". The people I have spoken to who are well and off medications treated long term.
I have only been treating 7 months and I have improved. I am very much (90%) functional.
My daughter is doing great. Thank God and Dr J. She is playing tennis and doing gymnastics and only treating for lyme at this time.
Posted by aMomWithHope (Member # 19255) on :
Is the belief that 1-3 years is the average time needed for treatment for Lyme and co-infections treated together or just Babs, just Lyme, just Bart?
I've asked the LLMD several times this exact question regarding my child, and he has never given us a definitive answer nor even a hint that it could be a long as 3 years--always the same answer of 2 to 3 months after all symptoms are gone--knowing that treatment can take as long as 3 years isn't easy to swallow; however, at least having some # in my head as to how to monitor improvement helps.
Posted by TF (Member # 14183) on :
1-3 years to treat all 3--lyme, babs, and bart.
Posted by marypart (Member # 27012) on :
Does the length of treatment depend at all on the kind of symptoms, neuro, joint, or cardiac?
I live in fear that Steere is right, and that my son's joint pain will never go away.
He has those dreaded DR4 and HLA b27 genes...
Posted by kimmie (Member # 25547) on :
My daughter and I are both DR4+. My daughter also had a positive ANA and lupus test. Here is what Dr J said. These genes predispose us to develop an autoimmune reaction from lyme, which will persist until the infection is under control or irradicated.
My belief is that we need aggressive treatment as our bodies do not do a good job of fighting lyme. Detox is important. It takes time.
Posted by lou (Member # 81) on :
The outcome of cases is extremely variable and not everyone is cured or even in remission. So, I would add a note of caution about dumping a doc if you are not well in a certain arbitrary time period. It may depend more on the patient than on the doctor, their immune system, coinfections, genetics, etc.
Posted by triathletelymie (Member # 26456) on :
Up
Posted by kimmie (Member # 25547) on :
Onbam, I like your way of thinking! Never give up hope.
Posted by nefferdun (Member # 20157) on :
Inspiring stories. So good to hear. THanks.
Posted by James Fischer (Member # 24622) on :
My mom and her boyfriend both had lyme and 2 week oral treatment cured them. They both had the bull's eye so they found out quick. I on other hand had no BE was treated and have been sick for about 3 years.
Posted by stymielymie (Member # 10044) on :
I have been in lyme remission for 5 1/2 years i do have 1 flareup a year and treat with abx as a cold. i had lyme,bart,babs and maybe erych. also I am hla-dr4 + and did recover also had bilateral knee replacements 2 years ago. i was bedridden for 2 years and unable to walk for 4 years. i am now playing tennis 3 hours a day at a very high level. it can be done but a lot of ups and downs, much depression, and still able to fight it. treatment lasted almost 5 years and systemic treatment of yeast made me better.
docdave Posted by kimmie (Member # 25547) on :
Yeah! Docdave, thank you so much for this post. When I first learned that we were HLA DR4+ I was so upset. Thank you for showing that even the "worst scenario" for lyme can recover. I would welcome taking antibiotics "as needed" instead of daily. COngrats and best wishes
Posted by bcb1200 (Member # 25745) on :
I'm still in treatment, but am significantly better than my rock bottom.
My treatment started on 5/10/10. As of today, I only have a few mild symptoms remaining: -calf twitching -eye floaters -tinnitus
All mild and better than before. All of the wierd mental stuff I had is gone.
No more anxiety, brain fog,dizziness, light patches in vision, reflex, tachycardia, etc. All gone.
Crossing my fingers I can get all the way there in a few more months. Will know more in 2 weeks.
Posted by kimmie (Member # 25547) on :
Oh, one more thing...Both my daughter and I HLA DR4+, we are both playing tennis and she is back at gymnastics. I still have my PICC, but I am thinking I am almost ready to come off and switch to orals.
My original diagnosis was either MS, ALS or transverse myelitis. (or anxiety, depression blah blah blah!) If I dont get 100% "cured", I will take having my life back with minimal symptoms anyday over the hell I was in earlier this year.
Again, thanks so much for all the positives...esp stymielymie. I needed that.
Posted by geo (Member # 18333) on :
I have been treating for 5 months and while I don't think I am cured or have reached remission, I am feeling soooo much better. Keep a positive attitude, eat well and try to exercise.
Posted by Andie333 (Member # 7370) on :
I am feeling MUCH better than I was when I was first diagnosed. I'm back to work full time, and during a typical day, I have virtually no symptoms.
I've recently changed LLMDs because after a point, I didn't seem to be making much progress. The new person put me on a very different protocol. After a big herx reaction, I could see benefits almost immediately.
I had begun to think I'd be dealing with low-grade symptoms for the rest of my life. Now, I'm hopeful that with more treatment (we're slowly segueing from oral to herbal meds), and with a bit more time, I'll be able to put these awful diseases behind me.
I agree with posters who encourage you to find the best treatment you possibly can. For me, that's been the key!
andie
Posted by Jane2904 (Member # 15917) on :
Thanks for posting, I needed to read these today Posted by tickssuck (Member # 15388) on :
Interesting post....what about us with completely dysfunctional nervous systems caused by Lyme and co-infections (and whatever else)? Is there hope? The over-active, sympathtic overdrive symptoms, that's me - Feelfit and Lymetwister also come to mind, with similar symptoms. (Don't mean to piggy back original post).
I hope there's hope; but, sometimes I wonder...
TS
Posted by tickssuck (Member # 15388) on :
Up
Uh oh...no responses. I am getting worried
No other way to put it, this disease sucks (therefore the screen name), sigh.
Posted by kimmie (Member # 25547) on :
tickssuck, I have a very senstive CNS. It is slowly getting better. I do think it will heal more in time.
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