Topic: What % of people can be fully cured / in remission and off meds?
bcb1200
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In reading "Cure Unknown", Weintraub kept on referring to an 80/20 rule. Where typically 80% of people infected with lyme can make a full recovery and go on to leave symptom free lives off meds. 20% of the people will need longer treatment or maintenance therapy.
Is this what others have heard?
Is this 80% of all Lyme or disseminated / chronic?
Can you tell I'm on day 2 of a flagyl pulse? Day 29 of treatment. I'm feeling better overall but still have symptoms. I just want to be normal again.
B
-------------------- 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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But I think we could get there, if lyme was well known and recognized as a serious disease. Then we'd get much more research on it. There are many rocks that are left unturned when it comes to treatment combinations.
Today there's basically no-one who's even recognizing stage III lyme, let alone working on finding out what helps when the disease has come to stage III.
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Haley
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I asked my LLMD what the percentage was as far as patients that get well. She said 80% (my next question will be, what is the average amount of time patients treat).
She says the most difficult cases are the ALS type patients.
She has been at this for at least 20 years.
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bcb1200
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Soooo...follow up question. Are people on Lymenet the 80% of the 20%.
I WILL be an 80% statistic!! Maybe that will be my signature.
-------------------- 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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posted
If using the 80/20 numbers, I'd say 80% get better/a lot better, and 20% don't improve. Many of those who don't improve have the ALS like symptoms as Haley suggests.
If we're talking about a 100% recovery, then my impression is that we're down to a couple of percent.
Sounds like a good signature line bcb1200. I am thinking the same. I am not ready to give up my life.
I am going for the hundred percent.
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bcb1200
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My big concern is whether I will have to be on Abx for the rest of my life. I like the 80% chance better for that and not the "couple of percent" you reference, peter j.
-------------------- 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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lightparfait
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ALS symptoms can be cleared by addressing Mold!
It starts in the area above the upper teeth or sinus cavity, and moves upward into the brain from there. People with electrofog issues and problems using the computer and acell phone, etc, usually have the mold issues. EMF's stir the molds and cause them to grow rapidly.
Dr .K. says all his ALS patients have cleared their ALS symptoms with mold treatments. But lyme and bart and babs, etc...need to be addressed either with antibiotics...if it is debilitating, or if its milder, with the herb protocols, like Quinitessence...the 5 in one lyme and co-infections tincture.
Once all is addressed patients should not be on abx their whole life, just for a time, if the chose to use them. He energetically tests his patients to see which treatment is more effective individually, abx or herbs.
Molds and fungus are a bigger problem than people know, and cause major issues pre and post lyme if not addressed...causing long term illness.
then later, the die off has to be detoxed...this could be lifelong to maintain your health, but very do- able. This is just good old healthy living and cleaning up the body.
Google Dr. K's lyme/autism protocols and nold/candida/yeast/fungus at the klinghardt neurobiology.com for help.
Posts: 1009 | From NJ | Registered: Aug 2009
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posted
So for the 80% cured, how long is the typical abx treatment?
Posts: 749 | From State full of ticks | Registered: Dec 2008
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bcb1200
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That is the question...you have to remember that in the 80% are the local and early disseminated folks.
I heard that Dr. J typically treats kids on average of 3 years until they are well. That is because some are very very bad off.
The guy, Jared, from Under our Skin was 9 years and off Abx.
Others are 1 year or less. I think 1-2 is typical. Just my guess.
I'm going to meet Dr. M tonite at the SLAM forum in MA. I will ask.
-------------------- 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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TF
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I have been reading "Cure Unknown" for the second time lately.
Pam says that OF PEOPLE SICK WITH LYME FOR AT LEAST A YEAR, 80% get better and 20% don't.
The 80/20 applies only to the group who have been sick at least 1 year.
Evidently, the statistics are better for those who have been sick less than a year.
The one year point is when Burrascano says there is a significant amount of compromise to the immune system. That is what makes it difficult to achieve recovery for this group.
From page 3 of Burrascano:
"To be said to have chronic LB, these three criteria must be present: 1. Illness present for at least one year (this is approximately when immune breakdown attains clinically significant levels)."
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I don't believe that "better" and "cured" are interchangeable.
Better and CURED are very different. I feel much better when I add in (and stay on) Flagyl or Tinidazole...but it hasn't cured me yet.
Posts: 410 | From Victoria BC, Canada | Registered: Jul 2008
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TF
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Pam's exact words are:
p. 14 "some 20 percent of those infected for more than a year never got well."
And, p. 20: "If untreated for more than a year, a significant number, an alarming 20 percent of them, fail to respond to the normal course of treatment and stay sick."
Posts: 9931 | From Maryland | Registered: Dec 2007
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'Kete-tracker
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I think that to put it in better perspective, the longer you are INFECTED with Lyme and go unTreated, the lower your chances of being part of that 80%. People who get proper treatment (and sufficiently long enough treatment) after only having Lyme for, say, a few months, are much more likely to end up being part of that 80%. That said, even folks who've had Lyme for years (prior to treatment) are still more likely than not to reach a state of remission. This is what I've seen, anyhow. This assumes they get proper care, under the guidance of an LLMD. It just takes longer.
Posts: 1233 | From Dover, NH | Registered: Sep 2008
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sparkle7
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This is not an easy question. I believe there are many people who have not even been diagnosed with Lyme or have been mis-diagnosed with other conditions.
So, I think it's pretty hard to "guesstimate" what percentage get well & what percentage does not.
Until we have accurate testing - we just won't know. Many doctors are still in denial that Lyme is a serious issue or that Lyme doesn't exist in their state...
I hope we can all beat this.
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canefan17
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What is this book Cure Unknown?
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lyme in Putnam
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A book written by Pam Weintraub and her family with their misfortune of contracting lyme.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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littlebit27
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As I read more and more it seems that many people who has late stage Lyme will never fully recover. And my thoughts are it's just like cancer-we can be in remission but never fully cured. I don't think abx will cure us-only make us symptom free.
I am afraid that I will be symptom free for years and then something will happen-a stressful event or a bad sickness and those little buggers will come back out to play.
Since we could still show positive on a test years from the time our symtpoms start then why wouldn't we have the chance to relapse? I know there are different ways to GUESS at our chances of a relapse once better but I don't think we will ever be completely rid of it.
lightparfait
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Those in remission...if you keep your body balanced you should not relapse.
By balance, I mean, first:
work on healing your emotions and how to deal with stressers when they come up...many use meditatin , prayer, journaling, walking, etc...on a regular basis.
clear your body yearly of parasites...and do parasiate cleanse and colon cleanse.
Use probiotics regularly, especially if you have used antibiotics or during your cleanses to re-establish the good bacteria to help our gut heal.
Use either herbs or antibiotics to kill the lyme and co-infectins...in good order with a LLMD or ND educated in lyme.
Test for MOld and clear mold in the mouth and brain.
Clear out any mercury metal amalgams from teeth and possibly do a heavy metal cleanse if you have them. Most of us have aluminum and lead...which can be cleared.
When the treatments are accomplished...you must, for a lifetime, take a multi mineral supplement. AS we Americans are not getting our minerals in food. The soil is depleted. Therefore you will get fibromyalgia type pains and joint issues and muscle issues...lyme or not! All americans need supplementation. Recommended is a liquid multi mineral. And ;possibly Amino acids...
Adding fish oil, salmon, or flax seeds will help with getting the proper Omega 3 oils.
So know that after treatment and you feel in remission...you must continue to:
Take a multi mineral Take OMega 3 fish oil POssibly add total AMinoi Acids (if you have fibro pain) And keep your body cleansed in regular intervals.
Those I know in remission continue to do these things, but it does not rule their life anymoere. They are not thinking of lyme anymore, which is a breakthrough... just health.
Also: other people may have issues unrelated to and on top of lyme/co's and mal- nutrition...like AIDS or cancer for example. Those type of things linger and get mixed up with the lyme symptoms as well. So people who traditional treatment are not fully working for, have something else as a prioroty at the root.
Understand your own body and tweek your protocols to fit your health situation. It is so hard to compare to others.
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bcb1200
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I went to a conference last night in Sturbridge, MA. Dr. M was there from CT.
He said lyme is a lot like chicken pox. Most of us have had Chicken Pox and our bodies / immune systems keep it in check so we live symptom free. Some people, when experiencing a stressful time later in life, get Shingles which is the Chicken Pox virus popping up again after lying dormant.
He said that if you don't get treated for lyme in the first 4-6 weeks then you most likely cannot completely eradicate it from your body. But you CAN live a completely symptom free life and get it to a point where your body keeps it in check and you can get off meds, etc. But, like Shingles, it could flare from time to time.
This seems to make sense to me...although since I had bands 31 and 34 on my Igenex IgM, it means I've had lyme for at least a year which means I have little chance of a complete eradication.
My goal is to push back all symptoms until I feel completely normal and get off all meds. Just like Pam Weintraub, TF, Sixgoofy, etc. I will be part of the 80%.
I asked Dr. M about the 80/20. He said it depends. Some people will be treated for months / years and will go off and be fine for the rest of their lives. Others will seem just as good but will relapse. Still...others will always require some sort of maintenance therapy. This need not be just abx as he said you can't live for the rest of your life on antibiotics. That will cause its own problems.
BTW... Mrs Statlender (also from Cure Unknown) was at the meeting last night as well. Very good to meet her and hear her speak.
-------------------- 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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I didn't read this entire thread- but I must say. I was SEVERELY ill to the point after 3yrs with hasimotos, arthritis, allergies, seizures, chronic idiopathic hives, fibromyalgia, on 12 pills per day, positive csf, I had 6 weeks IV antibiotics, fell back alittle after, started exercising and fighting thru it, joined a gym, and was 90% SYMPTOM FREE besides some joint pains, and popping and cracking joints (thryroid back to normal size after IV treatemnt, and seizures gone) until this past Easter when I got sick, and hiking alot w kids every weekend I truly believe I was reinfected- alas no rash either time- joy. So you can get to a point of health- but after being down for the count and sick as hell for years- it takes time, some fighting and exercising to get there.
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I was treated for 2 years on all of Dr. B's protocols. I was really pretty normal for 8 years after that. No antibiotics for that time frame. Last Aug started feeling crappy again. Now have been back on abx since Sept. We will never be cured of this... but we can go into remission. Who knows what brings us out of remission. We need dr.s that not only treat us, but are willing to figure out how to kill this out of our bodies for good.
-------------------- Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again! Posts: 941 | From AZ-MT | Registered: Oct 2004
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glm1111
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I don't understand why people who go into remission wouldn't stay on a maintenance program to keep this disease at bay. I will NEVER go off of the protocols I am doing.
There are thousands of bb cysts, parasite eggs and g@d only knows what else lying dormant waiting to come out of hibernation if given the opportunity.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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TF
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My now famous lyme doctor never said anything to me about going on a "maintenance program" to keep lyme at bay.
So, I conclude that he doesn't believe such a program is necessary. (He also had lyme disease himself.)
It has now been over 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, babs, and bart.
I am not a smoker and I rarely drink--never more than a half glass of wine.
Perhaps that is a key. I have gone through extreme stress since getting rid of lyme. Also had 2 epidural injections (steroid shots into my spine). Still, lyme never came back. And, almost 2 years ago, I was bitten again and got the bulls eye. I got to my lyme doc within a week of the bite. He put me on 30 days of meds and I never developed any symptoms--just a mild herx from the meds.
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TF, What 30-day protocol (meds, etc.) did he put you on when you were bitten again?
Your story is always so inspiring. I really can't wait until I can write my child's success story.
Hopefully it will come soon, but at the moment, we are still just glacially plodding along...........
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TF
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Doxy and Bactrim DS. The doxy kills lyme and ehrlichia. The Bactrim kills babs and bart.
So, together you are covered for all the most likely diseases.
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TerryK
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I agree with parfait, terain is key. Dealing with all the issues that are known to impact lyme patients including those things that we know affect immune system function such as mold, stress and heavy metals will make a huge difference in whether one relapses or not.
Genetics also plays a role as does the circumstances of the infection such as the number of strains, type of strains, co-infections and length of infection before treatment. I'm sure there are many other considerations as well.
TF, I'm so glad you didn't get sick with your last bite. In "Cure Unknown", the author states that only 4 of the 20 strains that can cause rash actually cause dissemminated disease. You may or may not have had a strain that causes disease.
Terry I'm not a doctor
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TF
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Terry,
My doc and I believe I got one of the strains that cause disseminated disease based on the fact that I herxed on the meds.
He said to me when I told him about the herx, "I believe you got the real thing!"
I believe Pam said that of the 20 strains, 10 do not affect humans. So, that means 4 out of 10 strains of lyme cause disseminated disease in humans. Trouble is, we never know which strain we got.
I read that once you have had lyme, you will get a bulls eye with all future bites. (I didn't get a bulls eye with my original bite, and never saw a tick either.) My doc also agrees with this.
So, that is one good thing about having had this disease. At least we will get a sign in future if we have been bitten by a lyme infected tick.
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TerryK
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TF wrote: My doc and I believe I got one of the strains that cause disseminated disease based on the fact that I herxed on the meds.
Another possibility is that you stirred up what you already have or at least I've read that from others. They were fine, no symptoms and abx brought on herxing. Had you taken abx that hit lyme before the bite and not had a reaction? Just wondering. Trying to get a handle on the possibilities.
TF wrote: I believe Pam said that of the 20 strains, 10 do not affect humans. So, that means 4 out of 10 strains of lyme cause disseminated disease in humans. Trouble is, we never know which strain we got.
In the book she states that 6 don't infect humans and another 10 caused only a rash. Only 4 of the 20 could leave the skin and invade the tissue. B31 is the most virulent.
TF wrote: I read that once you have had lyme, you will get a bulls eye with all future bites. (I didn't get a bulls eye with my original bite, and never saw a tick either.) My doc also agrees with this.
That would be nice. Do you remember where you read that?
Well, for whatever reason you didn't get sick which is really great news!! Let's hope you never get another tick bite.
Terry
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TF
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TerryK wrote:
Another possibility is that you stirred up what you already have or at least I've read that from others. They were fine, no symptoms and abx brought on herxing. Had you taken abx that hit lyme before the bite and not had a reaction? Just wondering. Trying to get a handle on the possibilities
My reply:
Terry, about a year after I completed my lyme treatment I went to my lyme doc because I was afraid maybe I was having lyme symptoms.
He gave me an antibiotic challenge to see if I was. The antibiotic gave me no herx, no symptoms whatsoever. Then, I had to do a urine test. It came back negative, meaning that no traces of dead lyme bacteria were found in the urine.
So, lyme doc said the problem was not lyme; my symptoms were menopause.
Also, Terry, I don't remember where I read that once you have lyme you will always get a bulls eye rash when you again get lyme. And, my now famous lyme doctor didn't say what made him believe the same thing.
I suggest you try searching the literature.
I believe the reason I didn't get sick from the tick bite was simple--I had a great lyme doctor who treated the bite properly. I got treatment within 1 week of the bite.
Is that so hard to believe?
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Geneal
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Hmmmmmm. I may be wrong, but I thought there to be over 300 strains of Lyme.
I was in remission. After almost 3 years of antibiotic treatment.
I also have babesia and bartonella.
New tick bite today too. Lovely, huh?
I have to admit that I did take better care of myself.
I didn't go to a gym. I did walk as much as I could.
I also kept going. I didn't have the ability to lay down and nap.
I had two small children (both with congenital Lyme).
There were times I swear I could have slept standing up.
There were times that I had no real recollection of activites or conversations.
There were times that I would have given my right leg for the ability to be ill.
I think that pushing through (not because I wanted to, but because I had to)
Is part of how I reached remission.
Of course my LLMD and friends here are a part also.
I can also say that I caused my relapse by working too hard
At a time my family needed me to (two full time jobs for 8 weeks did me in).
I am treating babesia still. My LLMD feels my Lyme is still in remission.
I do take some supplements and keep diflucan handy as yeast
Will probably always be a part of my life.
I don't get excited about having to deal with this off and on.
I do get excited about being able to speak and work and function
And enjoy life again...in a way that is better than it was before.
Hang in there. Better days do come.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Gael.. what kind of mainenance program are you referring to??
I do take the omega 3's and mineral supplement as lightparfait mentioned .. I think it helps.
I haven't done the parasite cleanse lately. Think I should do that one day soon!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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TF
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Geneal, I believe there ARE more than 20 strains of lyme disease in the world. Here is an exerpt from Cure Unknown. It appears the 20 are what was found on the Eastern Seaboard of the U.S., or at least the researchers focused on 20 strains.
Here is the exerpt:
p. 342 tells how Ben Luft, infectious disease specialist and Daniel Dykhuizen, evolutionary biologist, working together at Stony Brook went out into the field collecting ticks and analyzing Borrelia. A few years later, they had a graduate student travel the Eastern seaboard as far north as New Hampshire and south through the Carolinas collecting ticks infected with B. burgdorferi spirochetes.
p.343 ``The Borrelia were duly isolated and compared for differences in their genes.
Eventually the researchers focused on twenty strains, each with a different version of the changeable OspC. Working with those twenty strains, Luft learned that six didn't infect humans and ten caused only a rash. Only four of the twenty could leave the skin to invade other tissue like the heart and joints or the brain. The most virulent of the strains turned out to be the prototypical B31, the version of B. burgdorferi found by Jorge Benache in the original Shelter Island ticks and ultimately isolated by Burgdorfer and Barbour at the Rocky Mountain labs in 1981.''
Posts: 9931 | From Maryland | Registered: Dec 2007
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Just never- NEVER give up. EVER. and when you feel like you want to- and throw the towel in, rest, lay down, nap, and when you wake up- you get back on top and keep truckin.
I got mega sick in April- whether new bite (NO RASH just as initial time), whether I got rebit, or it blew me out of remission- I have no idea. All I know is I hurt- I feel like I was hit by a truck- and my exercise bicycle is collecting dust as I have the energy to work (for the most part) and go home and goto bed. I'll get there again- and so will you.
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TerryK
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TF wrote: Is that so hard to believe?
LOL:) I take very little at face value when it comes to Lyme because it does all kinds of unexpected things. Thanks for answering my question. I did not know your full history which is why I asked if you had done abx with no herx after you went into remission. Knowing that helps to understand why you feel you are cured.
For me, it's hard to believe that Lyme is cured due to the existance of the cystic form. There simply are not adequate studies or data to know for sure but from my own experience and what I've read I suspect that lyme may be similar to many other infections such as Trichinosis, Toxoplasmosis, viruses etc..
Once you have them, you will always have them and whether you have a relapse depends on how well your immune system can keep the infection under control.
From what I've seen here, you can be treated early on by a doctor who knows what he/she is doing and still end up with chronic lyme that remits and relapses. I've seen it a number of times and in young people too. I personally believe that it happens to some people due to the reasons that I mentioned in my post above. Some genetic issues, body terrain, immune system, strains, co-infections etc.
Also, I rarely hear of anyone with lyme and no co-infections but I know it happens so you must be one of the lucky ones who got lyme only the second time you got it. I think it's likely that those who go into remission easily may only have lyme and no immune suppressing co-infections.
In the end, it doesn't matter if one is cured or not. What really matters is if one can get into remission and stay in remission. I'm glad to hear you are doing so well and I think it's really fantastic that you stick around and give others hope of a complete remission.
Geneal, I'm sorry to hear that you got another bite and that you've had to work yourself so hard. I pray for a speedy recovery for you and I hope that you can slow down and take care of yourself.
Terry
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bcb1200
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Wow...sorry to hear others got rebitten. I hope I can avoid that.
I am feeling better after 32 days of treatment. But still have some symptoms. But..I'm encouraged by my progress to date. My fatigue is gone. My anxiety is gone. My brain is clear. My pulse is lower. Lingering symptoms are mainly full, ringing ears (although better), wierd vision at times (also better), twitching calfs (also better), and sweating (also better.)
The selfish part of me wants to be like TF. I want to cure this...get in remission and off meds and go on with my life. Period!! I want to be able to eat and drink what I want and not worry about yeast. I want to be normal.
On the other side...part of me is preparing for this to be a long term thing for the rest of my life. Sort of like diabetes. People need to take meds every day and watch what they eat. But they are alive. I do feel better now than the hell I experienced in Feb-April. it is nice to be "back." if I have to continue treatment indefinitely, so be it.
But it is my goal to be in 100% remission permanently. TF and Six are my inspiration. I know there are probably others, but TF and Sixgoofy are really the only ones who hang around here who are cured.
-------------------- 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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TF
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TerryK wrote:
"Also, I rarely hear of anyone with lyme and no co-infections but I know it happens so you must be one of the lucky ones who got lyme only the second time you got it. "
My answer:
My lyme doctor treated my new bite for lyme, ehrlichia, babesiosis, and bartonella. This is the way I believe all new bites should be treated.
Everyone in Maryland that I know with lyme disease also has babesiosis and bartonella. So, I believe the ticks around here that are carrying lyme are carrying all 3.
I don't think the tick that bit me had ONLY lyme disease and there is no reason to draw such a conclusion. That is my point.
Adequate treatment for a new bite with bulls eye rash is doxy and Bactrim DS. The reason is that these 2 meds will cover you for lyme, ehrlichia, babs, and bart.
But, only a lyme doc will treat a bite this way. Not a regular doctor.
Still, for those of us who are tick magnets, like me, I believe it is very important each time we get a new bite with the rash that we are treated for the entire spectrum of tick borne diseases--lyme AND coinfections--right off the bat.
I believe that my lyme doc saved me from going into another lyme hell by treating my new tick bite the way he did. The coinfections need addressed. That was his approach and is obviously his firm belief. He told me so. He doesn't think that you can just forget the coinfections if you get treated within a week of the bite. No! His approach worked for me.
The first time I got lyme, I also got babesiosis and bartonella with it.
So for lymies who get rebitten, I strongly suggest you get your doctor to treat you for that new bite the way I was treated.
I was so angry when I got that new bite! But, now I have accepted that for those of us who attract ticks, we can't live like "regular" people. Each time we pull out a weed, or touch a plant, or stand by tall grass, we have to immediately inspect ourselves for ticks.
It happened to me yesterday. I pulled out a few dead daffodil stems, and immediately I had a deer tick on the top of the my hand. And, it wasn't easy to brush off either!
I completed my lyme treatment over 5 years ago. Yet, 2 weeks after completing my treatment, when going to bed one night, I found an embedded deer tick on my stomach. I about freaked!
So, we lymies produce pheromones that attract ticks. It will be like this our entire lives. I learned that from listening to an interview with Dr. J (foremost pediatric lyme specialist) that was once posted on Lymenet.
He said that children who get lyme disease WILL GET IT AGAIN because they produce pheromones that attract the ticks. Obviously, those children become adults and the pheromones are still being produced. It is a life-long thing.
My husband (never had lyme) can do anything around the yard and we don't find ticks on him. I stand on the driveway for 20 minutes, and come in the house and find 2 deer ticks on my upper leg! That's just the way it is.
That's why I will not walk in a woods unless my life depends on it. I am not a "regular" person when it comes to lyme disease. Instead, I am a tick magnet. That is a fact.
Posts: 9931 | From Maryland | Registered: Dec 2007
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onbam
Unregistered
posted
To me cure matters immensely--even if you're asymptomatic, you can still transmit it. I suspect that there are superior treatments being withheld from us. If tests, why not treatments?
And TF--that last paragraph from Cure Unknown if sooooo consistent with it having been weaponized.
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posted
Dr. J told us the same thing about the pheromones. My oldest child basically spent most of his childhood in the woods at Audubon Societies, etc., yet never once got a tick.
The ticks definitely zero in on my child with Lyme. It is very sad for us, since we are/were a family that loved the outdoors, woods, all of nature. Now we avoid it at all costs with great sadness but don't want the risk of reinfection, etc........
Anyone know of a way to change the chemistry of the pheromones--garlic, maybe?
Posts: 648 | From northeast | Registered: Feb 2009
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
TF - thanks for the explanation. Makes sense. I didn't know you had been treated for co-infections too. That seems like a rare event from what I've seen and could be why more people go on to become chronic. Just curious, how long were you infected the first time before you got treatment?
I didn't know bactrim DS treated BLO so that's good to know. Interesting about the pheromones. My siblings and I are all sick and we are all bug magnets. Nothing like being bug bait for borrrelia's evil plan to rule the world.
bcb - I'm so glad to hear that you are responding to treatment so well. It's not selfish to want a cure, we all want that for ourselves and for others. You have every reason to expect a full remission. I believe that a large percentage of people do go into remission. Some easier than others but the majority seem to get there if they keep working at it and have enough money to pursue needed treatments.
We need to get the IDSA out of our way so that we can make some progress towards a cure and so that everyone can get treatment.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Hey Toots,
Sorry, I didn't see your post yesterday. Yes, parasite cleansing is recommened to do at least three times a year.
I will stay on some kind of herb and Hulda Clark strongly suggests staying on a once a week regimen of wormwood which you can read about on her parasite cleanse site.
I will also stay on the salt/c. The chances of any of these eggs or cysts lying dormant is too high. Even people that have gone into remission for a long period of time can be playing Russian Roulette with this stuff.
I just NEVER want to take the chance of going through this nightmare again.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
onbam - good point. What I was trying to say is that one can live a reasonable life even if they aren't cured. I didn't say it very well. Yes, I agree, a cure does matter but for now, it doesn't exist. edited to add - that we know of.
I've thought a lot about the ramifications of being a carrier and it is upsetting. Hopefully, since borrelia does not live in the bloodstream, the chances of passing it to others via ticks and bugs is small. Then of course there is congenital and the possibility of passing it to partners.
GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
There is not a spirochete to be found in me any place. They are gone and have been gone for years.
There definitely is this thing called a cure.
Many of you probably still feel the remnants, the neurotoxins and the horrible biofilm accumulated that still need to be disposed of,or you haven't paid attention to parasites that have in the meantime taken over some of the very important territory. I don't mean only the gut, but everywhere else. That is no longer Lyme, but is the result of another plague that is just as debilitating as some of the ones you have already disposed of with abx.
Attend to parasites in a strong and serious way, especially after having disposed of most of the toxic metal load. You will find yourself in a wonderful place that you never thought was ever possible again.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
There are no tests that can verify that one is rid of borrelia short of combing through all of a person's tissues at autopsy. Muscle testing is not 100% accurate either.
That said, I'm not doubting that a cure might be possible if all the other factors are cleaned up. I sure hope so.
I've been working on parasites, mold and heavy metals for several years because like you, I know they are important in order to get into remission.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
TerryK,
I had undiagnosed lyme disease for 10 years. THen, I got 2 years of lousy lyme treatment.
Once I got to a good lyme doctor, he tested me for coinfections through Igenex and I tested positive for babesiosis and bartonella also.
So, I am assuming I had all 3 diseases for the 10 years. I basically had no symptoms of babesiosis and bartonella, so my lyme doc was really surprised that Igenex found them. Looking back, I had a few episodes that were probably bartonella. I also had nausea 24/7 for the last 3 months before my diagnosis, so maybe that was babs or bart too. I don't know. The babesiosis was actually seen by microscope in my blood, so it was a definite.
Also, when I began treating babs, there was no doubt I had it. I immediately began having 7 day flares that lasted 48 hours each. I was practically a zombie for those 48 hours each week.
My lyme doc says Bactrim DS will treat babs, but it takes twice as long to do the job as mepron/zith. (I could not take mepron/zith.)
He treated me with Levaquin for 30 days for the bart. Then went on to treat the babs with Bactrim. He said the Bactrim also kills bart. So, I was on the Bactrim for nearly a year.
That's how I got rid of babs and bart the first time.
Here's a good link to a lyme doc's book explaining the meds that can be used to treat coinfections:
-------------------- ? 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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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i've had lyme probably 20 years or more.
i'm kind of skeptical about that 20 percent thing especially for people who have gone many years without treatment.
i think we'll just improve, relapse, improve relapse, but never really find a permanent "cure". but i would hope we don't have to be on abx the rest of our lives.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I believe many are cured and they are not on LN anymore.
I also believe that some of us are magnets for ticks and some ppl that think they have relapsed years down the road have actually been reinfected. Most relapses happen within a few months of stopping antibiotics after being symptom free of course.
You should take antibiotics 3 to 6 months after becoming symptom free. If the lyme is in cyst form it should in most cases reemerge soon after stopping antibiotics, within 2 to 3 months. The cyst should burst open as soon as the threat(antibiotics) is taken away. Especially at this time, since your body is so run down from fighting LD and from taking antibiotics for years. The ketes would love that environment.
I am sure there are exceptions, but I don't buy that its common for it to stay in cyst form for years on end. Possible but not common.
This is just an opinion that I have at this point in time. It comes from seeing others that have been cured for years and are living normal lives with no relapse.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
My daughter and I are both fully in remission and off meds. In August I will have been in remission for a year, off abx since Sept. 2008.
Currently I take nothing for Lyme, but I am still working on detoxing the toxins left behind by both the Lyme and the treatment as well as heavy metals ..... trying to change the terrain so I don't get sick again.
I ART test as being done with infection/parasites but still toxic.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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