posted
I'm wondering why it seems most everyone who have been healed of Lyme, no longer needing treatment, usually just say they've been "symptom free" for x amount of years?
Do you never really rid of the Lyme totally? Do you never repair all the damange? I'm cornfused Posts: 256 | From Texas | Registered: Jun 2010
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Nellers, no one is sure if you are ever rid of the lyme bacteria totally. Did you know that no one is ever rid of the chicken pox virus?
That's true. So, older folks can get shingles (chicken pox the second time around) when their immune systems get weak. But, people routine say that they are "cured" of chicken pox--meaning that they got rid of all the chicken pox symptoms and never got them again.
You never get rid of the cold sore virus either. It just lies dormant in your body until something makes it able to re-emerge.
So, I can and do say that I am cured of lyme, and babesiosis and bartonella. I also say that I am symptom-free for 5 1/2 years because that means a lot to a lyme patient.
If I say I am cured, then people on this board often write and ask me further questions like what I do or what meds or supplements I take to keep symptoms away, or ask if I mean that I no longer have symptoms, etc. They can't believe that a person can totally get rid of the symptoms and not have any left. This is their focus.
So, I am trying to be very clear by stating that I am symptom-free. Don't read into that that I mean I still have lyme or I know the lyme is still in me.
I am saying that the lyme is gone and the proof is I have no symptoms of lyme, I have had cortisone shots and the lyme has not returned, and I have gone through tremendous stress since being cured and stil no lyme symptoms have returned.
In addition, I was bitten again and got a bulls eye rash but my lyme doc treated me for 30 days with 3 different antibiotics (to cover lyme, babs, and bart) and I never got any symptoms except the rash and a slight herx. The lyme did not come back.
So, to my mind, all of this (and much more, like an antibiotic challenge and urine test a year after completing my treatment) indicates that I am rid of lyme disease.
All of my symptoms went away, the damage to my brain reversed, my false menopause reversed, and I have no damage of any kind to my body or mind now as a result of having had lyme disease for 13 years.
I am totally normal.
Posts: 9931 | From Maryland | Registered: Dec 2007
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Just curious about your lifestyle after being symptom-free?
Do you stick to a healthy lifestyle, diet, exercise, etc?
Do you keep up with vitamins and any supplements?
Any other changes or things you feel you must do in order to stay symptom-free?
Posts: 217 | From Earth | Registered: Feb 2010
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onbam
Unregistered
posted
While I'm inclined to believe that currently available treatments can't cure it, I don't like to settle for being told a disease is "incurable." TB and Leprosy are ridiculously complex--they can be intracellular, are very invasive, and form cysts, l-forms, biofilms, but they can be cured if you use the right drugs for long enough.
I've been clinging toEva Sapi's word on the subject when I e-mailed her this summer: "Please absolutely do not believe it is incurable." (Tell us what you really think, doctor!)
Additionally, I remember reading somewhere--I think in "Science News"--that some preliminary research has been done that they think could lead to a cure in a few decades for herpes, actually. Of course, the rate of progress in any field is
determined by the degree to which people invest resources in it, so presumably if they really made something like that a priority, they could get it much sooner.
Finding a way to efficiently purge the body of Lyme bacteria would be a top priority...if the system wan't run by butchers.
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TF
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Member # 14183
posted
To rks:
I don't drink or smoke; I didn't drink or smoke before lyme. (I have a very occasional 1/2 glass of wine.)
I believe these 2 things are the most important to maintain health, not just to keep lyme away. However, one lyme doc I know told a patient that if she went back to smoking, the doc believed she would relapse. I think that speaks volumes about the price we pay for smoking.
When I completed lyme treatment all those years ago, I did not continue taking any supplements or vitamins.
A few years ago my vit. D level was a little low, so now I take vitamin D regularly. It keeps me from burning when in the sun, and has given me the ability to tan which I really never had my entire life (very fair skin).
I stopped my weight lifting sometime shortly after lyme treatment.
3 years ago I was told I have osteopenia, so I walk (30 minutes, 2 miles) to help my bones. Used to do it 7 days per week, but have slacked off to about 2-3 days per week for the last year.
So, the main thing is that I don't do ANYTHING to stay symptom free. Just like you don't do anything to stay free of chicken pox.
The only things I do now are to treat current medical conditions--osteopenia and low vitamin D.
Lyme is totally a thing of my past. I only think about it when I come on LymeNet to help people by pointing them to the good doctors or providing lyme-related information to them.
I don't worry about getting lyme again. I just watch out for ticks and check myself for them each time I do yard work. I have had a number of ticks on me and 2 bites since completing my lyme treatment. (One tick had to be cut out of my abdomen 2 weeks after I completed my treatment.)
So, my number 1 concern is getting ticks on me. Ticks are a major problem in my neighborhood. My next door neighbor now has lyme. Another had a bulls eye rash a few years ago. We have a lot of deer, lots of woods, etc.
I have modified my activities based on my lyme doctor's advice. I now will not go into a woods unless my life depends on it. I now no longer pick berries along the side of the road. I will not walk in the tall grass along side of roads. I won't lean against trees or sit on logs anywhere.
Before doing any yard work, I spray myself with tick repellant. I check myself thoroughly when I am finished--whole body viewing.
Those of us who have gotten lyme disease generally produce pheromones that attract ticks. Learned this from Dr. J, in Connecticut. So, we are tick magnets. This is very true of me--ticks and mosquitoes. The difference between me and everyone else in this respect is so obvious.
I can stand on my driveway for 20 minutes and come in the house and find 2 ticks on my leg. My husband can climb in our shrubs to cut them and spend hours doing it, haul the cuttings into the woods, etc. and not get a tick on him.
Dr. J says he gets all the children well, but they will get lyme disease again due to their pheromones. You know how kids roll on the ground, jump into leaves and lay in them, etc.
As an adult, my major lifestyle change regarding lyme relates to staying away from tick habitats and being very careful each time I have to be out of doors.
My goal is to not get this disease again. That requires continual vigilance on my part since ticks are so attracted to me. I will be doing this for the rest of my life.
(My lyme doctor suggested I sell my house and move to an area with less lyme disease.)
I had to mourn the loss of the activities that I loved my entire life (especially picking berries, which I had done my entire life), but after so long, you rarely think about it anymore. I have adapted to my self-imposed restrictions on my activities. It is well worth it so as not to get this disease from hell ever again.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
You hit the nail on the head, in my opinion, when you said Lyme is a thing of your past and you don't think about it.
So often, it seems, Lyme patients become the Lyme. It becomes their idenity. And I believe when it becomes who you are, it's that much harder to heal. It gets rooted, not only in your body but in your heart.
Thank you for sharing your story and your wisdom. I look forward to being on your side of Lyme!
Posts: 256 | From Texas | Registered: Jun 2010
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
I and both my children are considered in remission. They are doing quite well. I am still struggling with the damage done by the disease.
I've had extensive dental work done - seven root canals pulled, and cavitations cleaned out. LOTS of detox - parasites using both pharmaceuticals and homeopathics, two gall bladder cleanses, kidneys, liver, the list goes on. Have lost about 50 pounds in the process.
I had it 20 years, so lots of damage done. I still have yet to chelate heavy metals. I'm high in several, most notably mercury and lead.
The doctor wants to resolve the dental before chelation. He says this must be done to strengten the immune system.
The marathon goes on. But at least my kids are free of it for now. That was my main goal.
I didn't know about the pheromone (SP?) thing. Interesting, but not surprising.
I stay on the pavement too, and have altered my activities as well. Nothing is worth a chance of getting re-infected with this disease, and tx. Not to mention the expense. It has just about broken us; we can't afford another go-round with this nightmare.
Plus, I have the kids to think about. If I get it again, I'll be no good to them. Getting them through tx and out the other side has been quite difficult as they are both teenagers and in denial about the whole thing.
I am optimistic about getting better - to a place where I am closer to my old self, but don't think I will ever be the same as I was before the lyme. I was also 20 years younger then! So I have to be realistic.
For now, I am quite pleased with our progress, and try to look ahead to better days.
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
TF - I would have responded sooner, but had a couple of bad days. Since I've had to up my Rifampin, the days have not been so good. I was feeling so good before with only the 300 mg, but 600mg has definitely made a change.
Anyway, thank you so much for sharing your story. I was surprised about the pheromones too, but I do know that mosquito's love me!
It is good to know that there is not a bunch of maintenance, except the usual healthy living, after lyme remission.
I used to love hiking and I think I will still be doing that afterwards, just with much more caution and staying on the trails.
Linky123 - happy to hear you and your children are in remission. Sorry that you have to deal with the aftermath; I believe I will be doing the same and it has been quite a lot of years for me as well. But, we all have our battles and must keep up the good fight! Hang in there!
Posts: 217 | From Earth | Registered: Feb 2010
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posted
I fully believe that about the pheromones. Mosquitoes LOVE me. Ticks are always happy to find me too .. but thankfully I don't encounter very many as long as I stay on the concrete!!
I don't tromp in the woods and I don't walk on grass unless absolutely necessary. I'm serious.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bcb1200
Frequent Contributor (1K+ posts)
Member # 25745
posted
I love TF!
I will be "the next" TF and be cured of this.
BTW..I'm off Rifampin now for a week and feel very very good. Best I have in over a month. Hoping to be done soon.
-------------------- Bite date ? 2/10 symptoms began 5/10 dx'd, after 3 months numerous test and doctors
IgM Igenex +/CDC + + 23/25, 30, 31, 34, 41, 83/93
Currently on:
Currently at around 95% +/- most days. Posts: 3134 | From Massachusetts | Registered: May 2010
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
rks,
Thanks for the encouragement. TF is an inspiration to us all and is so generous to come back to lymenet and tell her story to those who need it.
Tutu,
I am now a 'concrete gal' too. Maybe we should start a club. Mosquitos love me too, as well as the ticks.
bcb, nellers, onbam, everybody,
I hope you all get your health back. It is possible as many on lymenet will attest. It is tough but it can be done.
One thing is for sure; we wouldn't have made it near as far as we have without lymenet. It is such a blessing!
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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posted
Like TF I am also well. I don't do anything to stay symptom-free.
I do exercise, always have. I also eat a healthy diet, again, have for years, grew up this way.
I take KPU supps because it's a separate condition that I will likely always have. I also take iron and thyroid. But nothing for infection.
I will occasionally take antioxidants (resveratrol, ALA, etc), but again, for general health, not for Lyme.
I have been well for one year. I believe that detoxing is still important after Lyme because I think it's important for everyone. Our environment is very toxic.
For years I was "in remission" and HAD to do things to stay healthy. Now I can live normally and am healthy, so it's more like "cured" .... like TF, I am more afraid of getting it from another tick bite than from relapsing (not to say it can't happen, but this is different from my previous "remission").
I have a glass of wine once in a while..
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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linky123
Frequent Contributor (1K+ posts)
Member # 19974
posted
Sixgoofy,
Enjoy your glass of wine. You've earned it!
-------------------- 'Come to me, all you who are weary and burdened, and I will give you rest.' Matthew 11:28 Posts: 2607 | From Hooterville | Registered: Apr 2009
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-------------------- ? date of bite/no rash 10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests CDC+ 23/39/41/45/58/66/93 currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements Posts: 718 | From Pennsylvania | Registered: Jun 2010
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