posted
Do you feel 100% like you did pre diagnosis? Ie. No joint issues like cracking or pain, no brain fog, no twitches etc...?
Posts: 15 | From Florida | Registered: Aug 2013
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TF
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Member # 14183
posted
I have the same life I had before lyme disease.
I feel exactly like a normal person. I don't have any brain fog or any type of brain problems. I don't have any twitches (never had that with lyme, babs, and bart anyway), no joint issues.
All my symptoms are totally gone, thank God! And, I don't take any supplements, meds, or anything to stay normal. But, I don't smoke, I rarely drink, and I lift weights for one hour twice per week because I have osteopenia.
I completed my lyme treatment 8 1/2 years ago and have been symptom-free since then.
I got bitten again about 6 years ago and was treated by my lyme doc within a week. 30 days of meds and I was done.
So, I have had lyme twice.
I really believe that the weight lifting that Burrascano says is required to achieve and maintain a remission is truly required. I give a lot of credit to the weight lifting which my lyme doctor said I had to do.
It was extremely difficult to do this, but I persevered.
Please read Burrascano on "Rehabilitation" near the very end of the Guidelines, page 31.
I had lyme, babs, and bart undiagnosed for at least 10 years before I was ever tested for lyme disease. So, that was my history when I finally got myself to a great lyme doctor who follows the Burrascano protocol. He was my third lyme doctor. He got me symptom-free in 8 months. At 13 months, I was done with treatment.
The doc is the key to getting rid of this disease. And, an obedient patient. Obey everything Burrascano says to do.
Posts: 9931 | From Maryland | Registered: Dec 2007
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kam
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posted
This looks like a good thread. I will try and follow it when able.
I know when I had my first appointment with my LLMD, a person in the wtg room said she had 80% of her life back.
She said she had gone undx a long time before startign treatment.
I know we are all different.
But, things I would like to know are:
1. HOw long did you go undx before starting treatment?
2. How bad were you?
3. What treatment did you do?
4. Of that treatment which was covered by insurance and which insurance.
Ok my brain is fading now. I know we need a program to keep track of people.
It would be great to have some kind of pie chart or bar graph
I know I sent an email to CALDA when I first came down sick asking for some kind of program.
They need someone to write the program.
MG was something that was mentioned as a possible dx. I learned that 1/3 regain health, 1/3 stay the same and I don't recall what the last 1/3 was.
I know with MS the percentage that end up in power chairs or wheel chairs was very low....something like 10% but dont' quote me on that.
It would be nice if we had some kind of stats too.
AL's was also mentioned as a possible dx for me. But since it has been 12 years now and I am not dead AL"S doesn't fit for me.
I think the life span is 3 years after being dx with AL's.
[ 10-23-2013, 07:36 PM: Message edited by: kam ]
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Ellen101
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posted
I am interested in this thread as well. How do you know when your cured??? I guess what I find confusing is so if you do a few yrs of antibiotics and your symptoms are gone, but then over the next few yrs you develop other symptoms how do you know if its Lyme relapse or something else. Chances are any of the symptoms posted would be linked to Lyme....
Posts: 1748 | From United States | Registered: Dec 2011
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desertwind
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posted
Or....how do you not know if you were bitten again? Gosh, I have been bitten so many times over the past 15 years that I have lost track. Never quite sure if my times of remission were interrupted from a relapse or re-exposure from a new bite.
Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010
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posted
I feel like my Lyme and babesia are gone... 9 yrs now. But I battle yeast. It's a struggle!
Protect yourselves to the max while going through treatment. Do not stop taking probiotics even when you are finished.
I did both of those and still suffer. The mistake I made was taking PB8... worthless if you ask me. I thought I was covered, but was not.
I also did too much cheating on my diet when I got off abx.
Oh well!
PS .. My GI doctor made me worse 3 yrs ago with meds he gave me. I was stupid and listened to him. I've been a mess ever since. Things were pretty much OK before that.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
My LLMD said it is difficult to know for sure when treatment is done because there is no definitive test.
Obviously, if all the symptoms are gone then you know you are done.
The real difficulty comes in when trying to determine if the remaining symptoms are a result of damage by lyme or treatment (candida).
I read on a blog from someone who went to the recent ILADs conference that some LLMD's are beginning to believe that chronic lyme can become an autoimmune condition.
Not like IDSA which says post lyme syndrome but the infection causes an autoimmune response.
Interesting theory.
Posts: 538 | From kentucky | Registered: Nov 2011
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TF
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Member # 14183
posted
You don't know if you are cured or not right away. It takes time.
Once you get to the symptom-free point, then you take meds for 2 more months (or more). Then, you stop the meds and see what happens.
If symptoms start coming back, you are not cured.
In my case, I wondered if I was getting lyme back about 9 months after I finished my treatment. So, I went back to my lyme doctor and discussed my new symptoms.
He said it sounded like menopause to him and not lyme. He named the characteristic lyme symtpoms, and I didn't have any of them.
But, just in case, he did an antibiotic challenge on me. I took antibiotics for 1 week. Then, I collected my first morning's urine for a number of days and put a test strip in it. I sent the strips off to a lab after so many days of testing.
The test revealed that there were no dead lyme bacteria in my urine, so that meant that there were no lyme bacteria for the antibiotics to kill--I did not have lyme disease.
As time went on, it became clear that my symptoms were from menopause.
I will tell you that you do really worry after you stop treatment. But, as time goes by, you worry less and less.
Heck, 2 weeks after completing my lyme treatment, I found a tick embedded in my belly at 11 p.m. one night and freaked out! I sent the tick to Igenex to be tested. It was negative.
Then, 2 years after completing treatment, I put a few weeds on my arm for about 2 minutes before I threw them away. A few days later, I got a raised, itchy welt on that arm where the weeds lay. Then, it turned into a bulls eye rash.
So, it was back to my lyme doctor. He treated me for lyme, babs, and bart for a total of 30 days. I herxed mildly on day 3 of treatment. After that, I was fine. I never got any symptoms except that bulls eye.
So, as you can see, you can get scares after treatment. I even was told by an ENT last year that he thought my problem was lyme disease. (I had a MRSA infection in my sinuses, plus 2 other infections.) So, he did a Western Blot on me and it was positive.
So, I went back to my lyme doctor last year because of this. He said he thought my ENT was weird! I felt fine. I was just finally recovering from one year of having an undiagnosed MRSA infection in my sinuses.
So, as you can see, I have gone back to my lyme doctor twice since I completed my lyme treatment.
I believe I will always test positive for lyme on the Western Blot, or at least for many years.
So, it takes a few years before you feel safe in saying that you are cured of lyme disease.
If you watched the Lyme Conference that was on a few days ago, you saw Burrascano say that if a person gets rid of lyme and it doesn't come back in 3 years, then it WON'T come back.
So, I guess that is the point at which you can truly say that you are healed. 3 years after completing treatment.
Posts: 9931 | From Maryland | Registered: Dec 2007
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kam
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posted
It has only been a weeek. Very strange. I was thinking a month. I really loose track of time.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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posted
TF.. When I was dxd in 2000, I had not even SEEN a tick for at least 20 yrs. So what happens 6 months after stopping treatment?? I GET BIT by a tick!
I don't even walk on grass, but I had walked across a gravel driveway that had some LOW weeds. I guess that is where I got the tick.
Got the tick tested by Igenex, came back 3 weeks later that it was negative for lyme and babesia. I had started doxy the same day I found the tick. (It may have been attached 24 hrs)
On day 9 I felt sick. Took the doxy for about 6-8 wks. No more symptoms.
PS .. at the end of my initial Lyme treatment, my LLMD gave me high doses of flagyl. It was a challenge. He said if I had no symptoms flare up I was good to go. No symptoms... so off I went!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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surprise
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posted
Improvements are nothing to scoff at (not that anybody is scoffing)
I am not 'cured' BUT, I feel pretty darn fit- doing consistent weight lifting for almost a year, walking,
I eat healthier than I ever have in my life, had some spiritual growth (not achieved lightly!)
I don't eat Advil liquid gel caps like candy anymore, and my mind is sharper, memory better and improved.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
PS .. Because my LLMD had prescribed many of my ongoing prescriptions, I continued to see him several times a year for that. So I was closely monitored. I considered him to be my main doctor even though on paper he wasn't.
My last appointment with him was 4 yrs ago.
-
surprise.. Sounds like you are making very good progress!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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surprise
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posted
Yes, and it only costs me $1,000 a month in supplements! Kidding, kidding- (kind of)
Still working at it though. Thank you everyone at Lymenet.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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posted
TF, MRSA in your sinuses? Have you done anything about that?
Posts: 803 | From USA | Registered: Oct 2013
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TF
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posted
Carmen, the MRSA made me sick as a dog.
Balloon sinuplasty showed one sinus was full of pus from it.
I was treated for it for 9 months until it was finally gone. That was a year ago. It occupied my entire life! It took 6 months for it to show up on a culture and nothing ever showed up on CT scans. So, the whole thing was a total nightmare for me. Doctors didn't know what infection it was or if it even was an infection until it finally showed up in the sinuplasty and on a culture along with 2 other horrible infections.
This was the first and only sinus infection I have ever had.
As a word of warning to others, the infections I had are normally hospital-acquired. So, the guess is that I got them visiting someone in the hospital.
These germs can be on all surfaces in a patient's room. I suggest you not touch anything when visiting a patient and also use the hand sanitizer when you leave. Don't touch your face (eyes, nose, mouth) at all while you are visiting someone in the hospital. That's how these germs can get in your body.
Posts: 9931 | From Maryland | Registered: Dec 2007
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TF
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posted
desertwind:
I never saw a bulls eye rash or an attached tick when I got lyme disease the first time. However, after getting rid of lyme, when I was rebitten 2 years later, I DID get the obvious bulls eye.
I told my lyme doctor that I had read that after you have had lyme, if you get it again from a new bite, you will get a bulls eye. He said he believes that is true. It certainly was true in my case.
The reason for this is that the body has antibodies to lyme now (from your first episode of illness), so as soon as the lyme germ is introduced through a new bite, the body reacts and makes the characteristic bulls eye rash. Mine lasted for nearly a month, and the red dot where I was bitten about 3 months. The doc said this was normal.
So, perhaps you can know when you are rebitten after you have been cured--as long as the bulls eye is in a place you can see (not in the scalp, etc.). That is what I believe.
To irupp33, regarding my neuro symptoms:
I had episodes of overwhelming anxiety. These were likely panic attacks. I took xanax for these, and would have to stay on the xanax for about 30 days each time I had an episode.
Then, eventually I just had to take it all the time, and at increased dosages. And, finally, it just didn't work anymore. This was over a period of years.
I had episodes of sound sensitivity, where I would scream to turn the radio off--all of a sudden, it seemed to be blaring. I had nearly continual headaches for months, lots of stiff necks, migrating spots of what felt like sunburn when I lay in bed trying to sleep (had my own LSD trip there) and finally felt like I was being stabbed by thousands of pins and needles all over my arms and other places. This was hard to bear.
I also experienced terrible word-finding problems, so that I became afraid to speak at meetings. I couldn't remember the names of things like "cup" "sponge," etc. I would end up yelling at my husband "that thing! that thing! Hand me that thing!" It was very frustrating.
Sometimes I made mistakes like putting salt in my cup of tea instead of on my egg and putting plates in the refrigerator instead of in the cupboard. I would catch myself when I did it.
I had memory problems. I would have no memory of entire conversations with my husband. I told my gyn that I thought I had Alzheimer's. She just laughed at me. But I wasn't laughing. I knew something was wrong.
I couldn't remember people's names. For example, I would lay in bed trying to remember the name of my coworker who sat in front of me. I talked to her every day, and we had been talking daily for years!
I also had episodes of derealization. For example, sitting in rush hour traffic on the D.C. beltway, I didn't really believe that I had to hit the brakes when the brake lights came on on the car in front of me. I had to yell at myself to do so. I really believed I would just float right through that other car.
A neurologist ordered a brain scan. It showed I had 2 UBOs (unidentified bright objects) which are likely areas of hypo-perfusion. I was glad. That proved that there was something wrong with my brain!
I never had brain fog.
One day at work I got gaps in my visual field. I could see my coworker's body but not her head. It was just a blur there. Same with anything I tried to read. It looked full of typos. This went on for a few hours, so I had to call my husband to get me at work (too dangerous to drive home). While waiting in my car for him, I had what one lyme doc called "a major CNS event."
In the car, I felt like I was going far, far away. I thought perhaps this was me dying. I didn't care. It was peaceful. I lost all strength, so I could not lift my arm or move any part of my body.
When husband got there, I had to work hard to make a little motion to him, laying in the seat. He had to pick me up and put me in his vehicle. For hours I could not walk without leaning on him. I could not think. He asked me a question and I yelled, "Don't make me think. My brain won't think!"
I went home and lay down. By the next day, I was OK again.
I got terrible dental pain that lasted for months. Dentist did one root canal, then another, then threw up his hands and sent me to an oral surgeon that diagnosed it as "inflammation." (From what? There was nothing wrong with any of my teeth.) For months I lived on anti-inflammatories and prescription pain meds (narcotics). I wanted to cut my head off. It felt like liquid fire was flowing down my jaw continually. Cold and wet weather made it worse. It finally went away when summer came. This was a neuropathy.
My extreme muscle weakness was also neurological. That's why in the first 5 years I could be totally normal one day and unable to stand for more than a minute the next. When I was weak, I couldn't even hold my mouth open to have my teeth cleaned.
It was like a switch was being turned on and off. During the weak periods (lasted for at least 7 months at a time before becoming permanent), I could only hold the phone to my ear for 30 seconds, stand for a minute, walk for a block, could barely walk down steps for the shaking of my legs, etc. I dreaded rising up from a chair or stepping up a curb--it was too hard to do.
Then, one day the episode would end and I would be perfectly normal again. But, for the last 5 years, the extreme muscle weakness was continual.
With my second lyme doc, while being treated for lyme, I developed more symptoms involving nerve pain--I got trigeminal neuralgia. Look it up and you will find out that this is intolerable pain that hits your face after you have been chewing for a while. You feel like you are being electrocuted in the face. You scream out. People can't live with this pain. Nothing helped it. I became afraid to eat anything that had to be chewed for fear of having another episode occur.
Also, long before I had any diagnosis, I had bilateral facial drooping, which is a mild bells palsy on both sides of the face. It looked like I was always scowling, and it felt like my face was being pulled down by gravity.
I had that for 3 1/2 years. Then, one day I woke up and it was gone. Years later when I got my lyme diagnosis and read the symptoms, I remembered those 3 1/2 years with the facial drooping.
So those are some of the neurological problems I had and CNS and cognitive problems.
Lyme also changed my personality. My husband said I even drove differently. I think I became less aggressive as a driver. I was more meek, he said. I felt a lot less confident when I had this disease, that‘s for sure.
I remember having such strange reactions to things and uncharacteristic thoughts. For example, my husband called me at work one day and said he wanted us to go out to dinner that night. I thought, “Wow! He wants to go out to dinner with ME. with me! “
It was hard for me to fathom--that he wanted to be with me. Now, that was a totally strange thought, and I soon realized how strange it was. Then, that made me upset that I thought it was so wild that my husband wanted to go out to dinner with me. It was crazy thinking.
These are some of the things I documented and remember.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
And thats all gone now? 100%?
Posts: 15 | From Florida | Registered: Aug 2013
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TF
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Member # 14183
posted
irupp33: Yes, it is all gone and has been gone, 100%, for the last 8 1/2 years.
Is this so hard to believe? Is that why I am being asked to keep on explaining what I mean when I say I am completely symptom-free, totally normal, like I was before lyme disease?
I have at least 5 friends and neighbors that totally got rid of lyme and have their normal lives back.
I am not a rare exception by any means!!!
And, you only asked for my neurological symptoms, so that's all I told you. I didn't go into the horrendous abdominal pain I suffered from bartonella, or my continual inability to sleep, my unbelievable fatigue that was so bad that "fatigue" is not a good enough word to describe it, my horrendous false menopause (stopped producing all sex hormones of any kind), terrible dry eye, terrible dry mouth, extreme vaginal atrophy, continual nausea, and total loss of sexual response of any kind. Sex no longer even made sense to me!
My husband believed that I was going to die and he would be a widower! I often told him that it was a good thing we didn't have a gun in our house because on that day, I would use it on myself. These kinds of statements were made because a person can only take so much extreme suffering for so long without wanting to find an escape.
I was cured by gong to a doctor who follows the Burrascano Lyme Treatment Guidelines. He was my third lyme doctor.
So, now I only recommend doctors who follow Burrascano. That is how my friends and neighbors got rid of lyme also. They went to the doctors I recommend.
That's why I still stick around LymeNet--to help people through the lyme doctor learning curve. I wasted 2 years with an inadequate lyme doctor. I want to help people avoid these kinds of experiences.
The doc is the key to getting rid of this disease. I can't emphasize that enough. If you are with a doctor who does not follow the principles in the Burrascano Guidelines (such as treat all coinfections, give supplements, treat 2 months past symptom-free point, give combinations of antibiotics simultaneously to kill all forms of lyme, probiotics, non-aerobic exercise, no drinking or smoking, etc.) your chance of ever getting rid of these diseases is probably low to none.
I tell everyone to STUDY the Burrascano Guidelines, compare their treatment to what is in the Guidelines, and, if your treatment doesn't line up, find a doctor who does everything Burrascano says to do.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
TF and Lymetoo-thanks for sharing your positive experiences. It is easy to give up hope during this marathon of treatment and I'm so grateful that you both stick around and offer hope!!
Thank you
Posts: 238 | From new england | Registered: Feb 2013
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posted
Tf if the secone to last paragraph you said "your chance of ever getting rid of this disease is low to none."
Was that a typo?
Posts: 15 | From Florida | Registered: Aug 2013
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TF
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posted
No typo. My belief is that if your doctor does not follow Burrascano, your chance of getting rid of this disease is very low and may be no chance at all.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
Ah ok I miss read. My mistake Posts: 15 | From Florida | Registered: Aug 2013
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Marz
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posted
TF--interesting what you say about getting a bullseye the second time.
None the first time for me many, many years ago--but second time I had a red ring I didn't think could be lyme because it didn't have the red center.
Was off abx, it was Dec by the time I went to LLMD with symptoms and told her it couldn't be lyme because it would have been end of Nov when I was in tick country and had a dog sleep on my lap for a couple of hours after walking it!
Couldn't get lyme in the WINTER! And guess it doesn't have to have the red center.
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