hiker53
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posted
This may seem like a dumb question, but how do you know if you are cured (or in remission)?
Will someone always test positive for Lyme antibodies even if the symptoms disappear?
Can some symptoms be permament even if the bacteria are eradicated as in some other diseases?
Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8879 | From Illinois | Registered: Aug 2004
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SForsgren
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Generally, when your CD57 is above 150, you are doing pretty well. Yes, symptoms could persist from damage done by the infection. I do not think the infection is ever erradicated. As for treating, my doctors treat until there is no IgG or IgM.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Aniek
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Most LLMDs treat until symptom free for a period of time (1-3 months is the range I've heard).
I do believe certain symptoms won't go away with antibiotics alone. That doesn't mean they are permanent. I think some symptoms need supplements, nutritional support or exercise.
There is no way abx alone would have reduced my pain. I had Lyme 17 years before diagnosis. My muscles were so tight, I needed the help of muscle relaxers, physical therapy and yoga to retrain them to be normal.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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SForsgren
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If CD57 is normal (and not decreasing upon retests ie. heading down) and someone is still symptomatic, significant active Borrelia infection is "generally" unlikely. In that event, I would be looking for co-infections and differential diagnosis. This is "generally" of course
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
I personally don't think the cd57 test results amount to squat. My llmd agrees with me regarding this test. Treat it till there are no more symptoms then go an extra three months.
Posts: 649 | From United States | Registered: Dec 2003
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hiker53
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What if some symptoms turn out to be permament? I have gotten rid of the following:
1) dizziness/vertigo 2) ringing in the ears 3) most of my imbalance 4) the tingling in my feet and hands 5) high ear pressure 6) poor digestion and absorption of food
All that remains is fatigue and some myoclonic jerks. The fatigue could be from two recent surgieries or could be from Lyme. The myoclonic jerks are not as severe as they used to be, but happen when I am tired or stressed or there is a weather change. I do take klonopin, Armour thyroid, magnesium and probiotics along with a multivitamin, but that is about it.
Ironically all of my improvements happened in the last 4 months year and I have not been on antibiotics since May of 2005, have not done the salt/C protocol since August, and have not rifed since October? Weird. I was treated for all co-infections except babesia (no symptoms of it).
This disease is baffling. Am wondering if it is worth getting tested by Igenex again or if I should wait awhile longer. I tested positive on the IgM and IgG there for Lyme, slightly positive for ehrlichiois, but negative for bartonella and positive at Bowen for lyme only.
Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8879 | From Illinois | Registered: Aug 2004
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posted
I'm glad to see that you do have some improvements, but I would call them just that. The remaining Sx's are serious indicators of an active infection. Hard to say what is left exactly. Could be a combo of lyme + Bart. What about your continued weight loss? Isn't that ongoing?
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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trails
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i woudnt waste money on testing WB at this point. I would rely on symptoms and progress. Perhaps you have found a good equilibrium! hoooooray!
As you know many need to stay on low dose abx or take abx throughout the year to stay in remission. I would discuss this option with your LLMD.
My own test results from Igenex have not budged even at times when I have felt VERY well and symptom free. I get the same IgM and IgG no matter what. My LLMD says let's save our money until better tests have been created.
I am so glad you are feeling so well! congrats!
Posts: 1950 | From New Mexico | Registered: Sep 2001
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Aniek
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posted
My motor tics really decreased tremendously since starting to treating autonomic neuropathy. My doctor uses a natural approach of B vitamins, Vitamin C, magnesium and amino acids.
Lyme can through your autonomic nervous system out of whack. Lyme treatment alone won't correct that, if you are nutritionally deficient.
For example, if you have an amino acid deficiency, your body can no longer digest protein so you can't get amino acids out of foods. It's a bad cycle that you need to supplement with amino acids to fix.
I don't know if you still have Lyme or not. There is no way to know for sure. But you might want to check out nutritional deficiencies and autonomic nervous system function.
I'm trying to treat all this together with Lyme. I came to the conclusion I can't fight the Lyme until my ANS is back up and running. But the Lyme is stressing my ANS.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Ann-OH
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There is no test to prove you are over Lyme. It can go dormant for years and years.
There should be a definitive test after 30+ years of our money going for studies on this disease.
I figure I have it under control when I can take antibiotics for some other infection and have no Lyme flare-up. I have been off regular antibiotics as treatment for Lyme for a while now.
Everyone is different. With 300+ strains of the disease organism, it is a wonder any treatment works for more than a few people.
posted
I just had some testing done. My LLMD spoke with my kaiser doc and she was actually able to get me testing through quest labs.
The test she ordered was an IGG IGM and ETB (I don't remember exactly what the initials were but i think it stood for epsteen bar)
I tested positive on half and negative on the other half. IGG IGM positive and ETB positive and then they did some sort of sub catagories and i tested negative on all the sub-catagories.
I am not really sure what this means....
I guess maybe I will have to go over it with my LLMD.
I went on Rocephin then claforan for two months so we didn't think I would test positive-but aparently I did.
If I still tested postive for lyme after almost two years of antibiotics and 2 months of rocephin with another 8 months of IV rocephin really help me?
confused....
-Lindsay
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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quote:Originally posted by smiles132002: I just had some testing done. My LLMD spoke with my kaiser doc and she was actually able to get me testing through quest labs.
A test through Quest means nothing. It's a waste of money and blood.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
In my opinion it is still there even after I have been feeling better for over six months.
Last July my hands started to get sore in the joints and tendons. Then I have started the Salt and C protocol in September. I started to herx at 3 week intravals and the pains in my hands went away!!!!! Along with this came itchy eyes sty's and swelled eye lids......as the stuff started to leave my eye area.
They do not know how LONG this STUFF hides in the body and reproduces and spreads. I believe it is always moving and looking for places to live.
So, I recommend staying on a protocol and changing protocols to kill it until you get no herxing from whatever you are taking.
I killed a bunch with biotic silver a few years ago but it's still with me.
It lives in the intestines, stomach, bladder (you **** out keets)gald bladder spleen BRAIN and EYES. When you take something that cleans out the eyes you are making progress.
Try d-Lenolate it is an olive extract from east park research. If you can work your way up to 6 of those a day AND NOT HAVE ANY HERXING then you are clean clean clean..... and can go have sex. and not worry about breathing on somebody you love.
Take care,
John
-------------------- Nov-08 NutraMedix, BurBur Pinella WORKS, Japanese Knotweed, d-Lenolate, ALC, Was on Salt/C 1.5 yrs ended in 06 My brain is working better!!
Feeling very good now Posts: 182 | From Northern, NJ, USA | Registered: Sep 2003
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posted
Lyme too-that was quite negative. First of all the blood didn't cost me a dime and it did show that I was positive-so in a sad way I supose that is good.
Perhaps they are not Igenex (which I've had done as well) but they were able to give me information. SO I don't view it as a complete loss.
Linds
Posts: 484 | From Burlingame, Ca | Registered: Sep 2005
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It's amazing they "found" lyme at all. I hope you will recover nicely. Keep the faith!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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hardynaka
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posted
John, I loved what you wrote!
Made me laugh! I'm not so afraid to breathe on someone, but I'm so afraid to share food, drinks and to kiss! I wonder if this feeling will one day go, even when we feel cured!
What you suggest about changing protocols and wait for a herx is interesting. The problem is that we can get herxes from other stuff than borrelia (like now, I'm fighting fungal infections and, man, one can herx with that surely)!
Selma
Posts: 1086 | From Switzerland | Registered: Oct 2005
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Andie333
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posted
Well, I'm about to start work after 18 months of abx treatment for Lyme and co-infections.
My CD57 is 9...
SOOOOOO, by cave and Scott's measure, I suspect I'll be on abx for a much longer time.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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Andie333
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posted
Okay, Cave...
I'll buy....
Andie
Posts: 2549 | From never never land | Registered: May 2005
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I think anybody that has had LD or others really need to think about this.
How do you know?
The tests don't work and there can be many co-infections, six I think.
I am not falling for that Oh I FEEL BETTER trap again.
The next time I think I am over it I will be taking something else to kill it!!!!!!
Then I will start looking for the herxing.
I like the Salt/C protocol.
-------------------- Nov-08 NutraMedix, BurBur Pinella WORKS, Japanese Knotweed, d-Lenolate, ALC, Was on Salt/C 1.5 yrs ended in 06 My brain is working better!!
Feeling very good now Posts: 182 | From Northern, NJ, USA | Registered: Sep 2003
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Aniek
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posted
Here's another screw to throw everything off kilter.
I stopped abx about 3 weeks ago because of diarhea and right abdominal pain. Besides the abodminal pain, which is either pancreas or gallbladder, I now feel the best I have since before starting treatment.
I feel better than I did one month ago on abx.
I had to stop abx once before because of abdominal pain, and after a few months, I got new neuro symptoms. So yes, that could happen again.
But, there is a big difference. Since that last time, I started using supplements to treat deficiencies and autonomic neuropathy.
I can't help but wonder if the supplements plus the abx may have kicked it. But I would never know if I stayed on the abx, because the abx were causing side effects.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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My LLMD says my CD57 was 21 when tested and is now 27 - so better, but consistent with Lyme, still after 9 months. Thoughts?
As for the treatment period I view it with the co-infection aspect. I have Lyme, Babesiosis and CPN C. Pneumoniae (respiratory infection)
At www.cpnhelp.org we found their treatment highly successful and we use it as the baseline for my treatment.
They state if you are on Flagyl or Tindamax with Rifampin and use them together with Azithromax and Doxycycline and have no reactions....you are essentially cured.
That treatment is a distinct minimum of 1 year to even 3-5 years base on your case. The 2nd-5th year basically is boosters or pulsing of the antis say 1 week every month)
Also, it is even recommended to take boosters throughout the lifetime to be sure and or when symptoms seem to be coming back.
Anyway, we use that as our baseline for treatment and my LLMD covers the Lyme and Babesiosis in addition to high dosage vitamin supplements.
The supplements, I feel, have been huge in my fight. I've found that many docs (even specialists) don't talk much about vitamins, etc..
I started antibiotics immediately after being diagnosed with MS because we weren't sure whether it was just Lyme based on many local stories we were hearing.
I've been on the full antibiotics and supplements for 8 months and I am basically 90% better.
Anyway...let me know if i'm crazy or if there are questions. I know it's different for everyone and I wish all the best for everyone out there.
Best regards, Karl
-------------------- Uncommon inner strength must defy gravity! 5/4/06 MS. Lyme, Babesiosis, Chlamydia Pneumoniae -respiratory infection. 9 mos./9 antis. 85-90% better. Now on Factive, Doxy, Rifampin. Used, Mino, Azithro, Mepron, Rocephin, Tini, Diflucan. Posts: 51 | From CT | Registered: Jan 2007
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quote:Originally posted by Aniek: I can't help but wonder if the supplements plus the abx may have kicked it. But I would never know if I stayed on the abx, because the abx were causing side effects.
I found that to be true for me. I was very afraid to get off abx. I finally did after I had taken Xango for about 6 months.
I had been feeling so much better and I got brave enough to dump the abx. I've never looked back since then!!!
[I did get bit again and had to take abx for about 2 months in 2005] Other than that I have been off abx for more than 2 years.
I think another important thing is to attack the yeast really hard after going off abx. Don't go eating all kinds of junk because you will feel as though you have LYME again!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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SForsgren
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posted
Stopping treatment with a CD57 of 27, in my opinion, likely means an almost certain relapse. My LLMD treats until CD57 is above 100, ideally above 150.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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5dana8
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"how do you know you are over lyme?"
If you are chronic- not sure if you ever completely "get over" . I think its when you get into a state of remmission that you personally feel is reasonable to live with.
I treated till my symptoms got better & my immune system panals finally are at a normal level. I am not near 100% but better than when I started.
My best now may not seem "good enough" for say someone usd to being more active & writng novels & working but from where I was almost catatonic & bed ridden its a major difference.
If my stomach hadn't given out & the $#@%%^& Medical boards hadn't taken away my LLMD I would still be in traditional treatment. Specially for my remaining bart which was the next thing my LLMD was going to re-treat.
Now I do rife & supps & pray & hope for the best. I guess it depends on how bad you where before treatment. And where you are at an ending point. Everyones seems different.
I hope we can all find a point where we can feel human enough to live life again to the fullest according to each individual's limatations.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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-------------------- Nov-08 NutraMedix, BurBur Pinella WORKS, Japanese Knotweed, d-Lenolate, ALC, Was on Salt/C 1.5 yrs ended in 06 My brain is working better!!
Feeling very good now Posts: 182 | From Northern, NJ, USA | Registered: Sep 2003
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posted
I don't know many people who I think are completely cured of Lyme.
For myself, as long as there is the hint of a symptom, I know the disease is still present, although beaten back into submission and very much under control.
Even having no symptoms and staying on my supplement regimen, I know I have Lyme Disease, because, if I ever stop doing the things I know that help, I WILL deteriorate.
I don't have to do very much any more. I really just take a handful of supplements daily.
But if one day I can totally stop the supplementation, and have no symptoms, no deterioration, and I stay well for months on end, I would consider myself to maybe not have Lyme disease any more.
But I don't know many people like that.
I know lots of people who think they are recovered from Lyme, but say they have adrenal depletion or mercury toxicity, or seizures from brain damage.
I think that in a lot of these cases, the person still has active Lyme but has been told they are cured.
I would rather stay vigilant my whole life and not get sick again, than relax, think I am cured, and get sick again.
Farah
Posts: 208 | From New Mexico | Registered: Dec 2005
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I consider myself in better condition than I have been for 25+ years.
Nevertheless, I know I still have Lyme-like symptoms, that can pop up periodically, if I'm not "vigilant" as you so well put it.
Even though I'm off all drugs and also, like you, only take some supplements, and exercise, and eat properly (greens, fruit, nut, seeds, teas, whole grains, no sugar, etc)...if I stray away from this protocol, I will quickly pay for it.
So Lyme (or whatever it is) is still there in the back ground.
The only test I can think of that might tell you if you're getting close to being cured is the Bowen test. You should register extremely low on this test, no?
Michael
-------------------- I'm not an MD. The above is IMO and in my experience as well as from health related books.
I've had symptoms consistent with neurological Lyme disease since 1986. Was diagnosed with Lyme in 2004. Am feeling better now than ever before. Posts: 702 | From NY | Registered: Jul 2004
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posted
Well said, everyone. With my CD57 at 27- absolutely, no way am I stopping treatment. It's amazing it's so low and I feel so much better.
Don't get me wrong, i'm still dealing with numbness in the hands and nystagmus vision issue the likes to keep me dizzy at times,
but as said before....the difference now since the beginning being bed-ridden....I do consider it much better.
the CD57 is a blood test that is time sensitive and indicates Lyme antibodies, I belive. If I'm not correct, please someone let us know.
Take care, Sincerely, Karl
-------------------- Uncommon inner strength must defy gravity! 5/4/06 MS. Lyme, Babesiosis, Chlamydia Pneumoniae -respiratory infection. 9 mos./9 antis. 85-90% better. Now on Factive, Doxy, Rifampin. Used, Mino, Azithro, Mepron, Rocephin, Tini, Diflucan. Posts: 51 | From CT | Registered: Jan 2007
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hiker53
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posted
I believe that the number you are given on the CD57 test depends on the lab that does it. Labs measure it in different ways, so the numbers vary. For example, my CD57 was a 12 done by Quest and the Dr. M in Wisconsin said that was a good number and nothing wrong with it. I was surprised by that.
I still have some major lyme symptoms, but am reluctant to do antibiotics as the last time they messed up my gut and dropped my weight from 117 to 87 (I am not up to 91). I feel so much better now than when I was on antibiotics, but not well enough to work, yet. Of course 2 surgeries in a month didn't help.
I do herx from rifing and the herxes are worse than the symptoms, so I am not sure it is worth it. I have not gotten worse since I stopped antibiotics in 2005. Hiker
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8879 | From Illinois | Registered: Aug 2004
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quote:Originally posted by John292: What is the CD57 level you refer too?
Can any test lab do this?
Thanks
Please What does this tell you?????
-------------------- Nov-08 NutraMedix, BurBur Pinella WORKS, Japanese Knotweed, d-Lenolate, ALC, Was on Salt/C 1.5 yrs ended in 06 My brain is working better!!
Feeling very good now Posts: 182 | From Northern, NJ, USA | Registered: Sep 2003
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Aniek
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posted
The CD57 test is a test that looks at your level of a natural killer cell called CD57. For some reason, doctors have noticed a pattern where CD57 cells are low in patients with Lyme.
There are other natural killer cells that are low with other diseases, like AIDS.
It is not a measure of Lyme disease per se. It is a measure of an immune reaction in your body to the Lyme. At the ILADS conference, it was noted that under 60 is a poor number, and most of the doctors there who test CD57 said they want their Lyme patients over 100 before stopping treatment.
The test results do vary some, so going from 20 to 30 isn't necessary an improvement, because it could be back to 20 again.
There are also many LLMDs who don't use the CD57 test.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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posted
I am going to have to get my CD57 checked. I think that has not been done yet.
Thanks
-------------------- Nov-08 NutraMedix, BurBur Pinella WORKS, Japanese Knotweed, d-Lenolate, ALC, Was on Salt/C 1.5 yrs ended in 06 My brain is working better!!
Feeling very good now Posts: 182 | From Northern, NJ, USA | Registered: Sep 2003
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posted
My wife and I married 20 years ago. Secound marriage for both of us.
She had all kinds of medical problems. Nothing made sense. Then she told me that she had the lyme bulls eye and was diagnosed with lyme 10 years ago in Wisconsin before we met.
I am a professional engineer and started researching Lyme. Sure enough, her symptoms where classic lyme. The 2 months of abx she received at the time was not enough as we now know.
Doctors didn't want to discuss it. We were able to get abx from across the border in Mexico. That helped, but caused her asthma to get worse..
This went on until 2003 she was diagnosed with breast cancer. It was stage 3, both breasts had to be removed. After 14 months (once a week) of chemo and 2 weeks of radiation, the cancer is gone.
No we didn't Lyme test as that was next to impossible with present doctors. The oncologist (chemo doctor) was puzzled by some of the chemo reactions at the time.
I was pretty sure it was Herx. I didn't say anything. Didn't want to p*** off the doctor. She was one of the best in the world for cancer.
The chemo killed the Lyme bugs. After four years she is like a totally new person. She has tons of energy and is always on the go. She works a very demanding job because she wants to but, doesn't have to.
The only problem she has now is sleep apnea. She wears a CPAP mask and pump. Now she can sleep like a rock with the pump.
The asthma is under control with meds..
Now we live on a high natural fat diet. Very little sweets or carbs. She eats no bread and lots of eggs, meats and vegetables.
She and I have no weight problems. I cook lots of high natural fat meals cooked in coconut oil. This diet boosts the immune system and brain.
We ignore the Cholesterol lies and propaganda.
After 4 years the cancer and Lyme are still gone.
What a change after spending most of her days in bed for several years.
Now I have a hard time keeping up with her.
Tj
Posts: 192 | From Phoenix, AZ | Registered: Apr 2005
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