Topic: Did anyone read the conference notes? depressing
beths
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posted
Kinda depressing...95% of patients relapse according to Dr B?
Yet he is symptom free....as are many people.
I think the key is once you go off abx..you aren't done. I was doing great, went off abx and relapsed. I should stress I was back to 100%-no stress or anything.
I didn't detox, or take herbs to finish off the rest.
I think the key is now...you really have to detox, and stay on herbs a long time, or rife or some follow up treatment.
I know TF and sixgoofy may disagree (but I have the same Dr as TF)
Just thinking outloud....the conference notes really depressed me. Not to many LLMD follow all the guidelines they state
seekhelp
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Yeah, there are some serious problems with the outcomes of 'successful' ILADS treatment at times. 95% failure rate from him, 99% from Dr H in NY...one can easily drop $30k in treatment and this is the prognosis. A TOUGH PILL TO SWALLOW.
Maybe TF's doctor has better luck as pretty much everyone was cured in his book. It seemed pretty easy.
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nefferdun
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Isn't TF's doctor Dr. S who wrote a book on lyme? You can just look through his book and his protocol is not any different than what anyone else is doing.
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seekhelp
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Yes, it is. But the book says the people are all symptom-free.
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beths
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My Dr is also Dr S, who wrote the book. He does "cure" a lot.
I kinda feel that they are really pushing Cowden and Byron herbs.
The author of "Cure Unknown" relapsed-but this was part of the plan-relapse badly, hit the bugs again when they come out of hiding.
She hasn't relapsed since. Maybe this disease isn't a 1 time treatment-it needs 1 or 2 to be successful?
Makes me wonder about pulsing.
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SForsgren
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I'm not sure if you are referring to the notes on my blog from the March event or not, but if so, I want to clarify.
I think the main point is that when antibiotics are stopped, people may need to go on an herbal or other microbial management program. That's what I did and after 2.5 years, I have not relapsed. I still treat, but not with antibiotics.
I also don't interpret their comments to mean that antibiotics may not have a benefit in some people or may not be needed for many or even most people with chronic Lyme at some point.
Thus, I don't think the comments are necessarily depressing, but more good information to not stop antibiotic therapy cold turkey and instead to consider what may be needed as a maintenance program with herbs, transfer factors, etc.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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beths
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Thanks for clarifying..it was from your blog. My "famous" LLMD never told me to go on a herbal program for maintenance.
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posted
I am not on any maintenance herbs but I do believe detoxification is necessary for EVERYONE, especially people who have beat Lyme or who are fighting it. We live in a very toxic world.
I continue to detox regularly and consistently. I continue to eat a healthy diet, juice, and exercise. I still get enough sleep every night.
I did less than two years of antibiotics then less than a year of Bionic 880 treatment. Not to say I stopped Bionic 880 treatment, it's just on the rare ocassion that I use it now, it's usually for some detox homeopathic remedy or another, not for treatment. I also treated parasites several times.
When I finished treating infections, I did many months of heavy detoxification including hulda clark liver cleanses, dr. natura cleanses, etc. I also actively worked on rebuilding the health of my gut.
I don't believe Lyme is a disease like strep where you just take some drugs and you're done. You have to rebuild health.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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SForsgren
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I think that doctors are always learning and adapting; as are the microbes. I know I have heard several of them suggest that treating these infections was easier years ago than it is today in many cases.
It also sounds as though there is becoming broader acceptance of blending allopathic and CAM to attain the best possible outcomes.
It is my opinion that we don't ever fully eradicate every last microbe once we have chronic Lyme, but I do think we can become asymptomatic and support our bodies such that they can largely manage themselves - maybe with an ongoing herbal or other similar program.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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chiquita incognita
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posted
Buhner also has some answers.
Knotweed helps to deliver abx to areas that otherwise can't be reached, and where bugs hide out.
So by using the knotweed alongside abx, you get the meds delivered to the...skin, heart, brain, joints....where bugs hide out and become inaccessible, thereby causing relapse.
The herbs may possibly help to prevent that relapse.
Best wishes, CI ps and while I am far from cured yet, I have had really good progress with herbs alone so far. I am hoping to do the whole job with them, we'll see how it goes. If not I will use abx to peel the last layer of the onion, using herbs to prevent as many side effects from longterm abx use as I can. That's my plan, for now. I also believe the herbs may be more powerful than people would give them credit for, reading the science about them is empowering. There may be more hope than we think.
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tricia386
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So Dr. H has a 99% failure rate?
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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posted
No, 99% relapse .... that is why he keeps looking for other things for after abx, like herbs. That's why these LLMD's are looking for what else to do to get people healthy.
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tricia386
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great...thats who I see....kinda depressing after all the money I spend!
-------------------- Lyme activated in April 2010 by gardasil vaccine. DX: Lyme,Babs,Myco,Bart 11/10 Treatment Started: 3/28/11 Posts: 1752 | From Albany, NY | Registered: Dec 2010
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posted
mouahhahaha, 95% relapse? Well then this whole thing is a JOKE, either lyme is totally incurable or most of lyme cases are actually TRUE MS, ALS, Lupus, Meniere's cases that feel more comfortable thinking they have lyme....
Posts: 723 | From Montreal | Registered: Oct 2010
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posted
It's not like other doctors have better rates. That's the explanation for why they are looking into herbs and how to rebuild health.
I realized this when I was in treatment with Dr. H. That is why when I felt like I had hit a wall in treatment (I'd feel good, go on herbs, crash go on meds, repeat, repeat), I tried something totally different.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I don't believe the 95% nor the 99%.. That seems really really high to me.
I've never done any major detox unless you call lemon in water a big deal and I haven't taken herbs either. When I was going through treatment from 2000-2004, no one talked about detox here. Seriously.
(I've tried taking herbs, but my bladder hates them!!)
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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bcb1200
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I think people are taking the 99% thing out of context. Dr. H meant 99% relapse when treated ONLY with abx. You need a comprehensive treatment plan with herbs, supplements, acupuncture, etc. I know he uses abx still as I know a few who go to him.
-------------------- 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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momindeep
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I agree with Lymetoo...she has been on this board a long time, me, not quite as long, but many, many posters are long gone and I have to believe that they are gone because they are now better and living their lives.
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Do you have the link to the talk bcb? I don't remember him clarifying that it was for abx only. I do remember him using it as an opening for discussion why he looks into other options. I no longer have the link .....
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TF
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Burrascano requires all patients to build up their immune systems so that they won't relapse. This is done by doing a 1 hour weight lifting program every other day.
This is what I did for almost a year before I stopped lyme treatment. I have not relapsed in the 6 years since I completed treatment.
I have taken no herbs, no Rife, no detox, etc. I live a totally normal life, not doing anything to keep lyme away. (But, I don't smoke and I basically rarely drink.)
Other exercises (pilates, walking, etc.) will not do. Other exercises can LOWER the immune system for an extended period of time, per Burrascano. That is not what you want at all!!.
Burrascano said the exact type of exercise that boosts the immune system the best--weight lifting and calesthenics. Also, it must be a full body workout each time.
Read pages 31-32 of his Guidelines. It starts with these sentences:
"Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary. It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission.. . .
In addition, there is now evidence that a carefully structured exercise program may benefit T-cell function: this function will depress for 12 to 24+ hours after exercise, but then rebound. This T-cell depression is more pronounced after aerobics which is why aerobics are not allowed. The goal is to exercise intermittently, with exercise days separated by days of total rest, including an effort to have plenty of quality sleep. The trick is to time the exercise days to take advantage of these rebounds.. . .
The program must evolve into a graded, ultimately strenuous exercise program that consists of a specific regimen of non-aerobic conditioning- see below."
From page 32:
"PROGRAM: 1. Aerobic exercises are NOT allowed, not even low impact variety, until the patient has recovered.
2. Conditioning: work to improve strength and reverse the poor conditioning that results from Lyme, through a whole-body exercise program, consisting of light calisthenics and/or resistance training, using light resistance and many repetitions."
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nefferdun
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I will have to look this up but I am sure the statistics were a lot more optimistic a couple of years ago. It was more like 80% cured, 10% needing longer treatment and 10% needing maintenance abx long term.
I quit abx twice thinking I was cured and relapsed. We also need to attack all the infections which I wasn't doing.
I sure hope this doesn't take that much longer. I have already been doing treating for over three years which puts me in the bottom 20% of those that require longer treatment.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Other exercises (pilates, walking, etc.) will not do. Other exercises can LOWER the immune system for an extended period of time, per Burrascano. That is not what you want at all!!.
2. Conditioning: work to improve strength and reverse the poor conditioning that results from Lyme, through a whole-body exercise program, consisting of light calisthenics and/or resistance training, using light resistance and many repetitions."
Pilates is moderate resistance training using light resistance. It is not the same as yoga or other matwork. Has he specifically said that Pilates is included in the "other" exercises group? I wonder because it so perfectly fits his description - light weight and stretching .... whole body.
I was discussing this with another lyme patient who does very well (maybe he'll chime in), and we thought that pilates was the PERFECT exercise because it did fit the requirements.
I feel that pilates was a big help to me in restoring my health. My musculature is much better with pilates than it was with a light weightlifting program.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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quote:Originally posted by bcb1200: I think people are taking the 99% thing out of context. Dr. H meant 99% relapse when treated ONLY with abx.
- That would make a little more sense.
PS .. I DO eat healthy and neither smoke nor drink. I also avoid sugar like the plague. I exercise and do just about zero weight lifting because of a bad neck.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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CherylSue
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Oh, this is not the thing to read before I go to bed. I've been in a relapse for a week and have missed work. I'm running a low grade fever of 99.4. I was functioning about 90% prior.
Lymetoo, I hope you are right. That there has to be something to follow up after abx, herbal or whatnot.
I've been treating for 3 1/2 years and was on a two year medical disability leave before that. I had several relapses since 2000 before I was diagnosed in 2007. It's been up and down and slowly things were getting better. Now this relapse. I hope it's over soon.
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SForsgren
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No one suggested that Dr. H has a 95 or 99% failure rate. As I understood, what he suggested was that when antibiotic therapy is stopped, 99% may relapse if they do nothing else. This is not to say that people that go on herbs or other things to maintain their progress will relapse.
Here was one statement he made that I find to sum it up very well. Focus on the 90-95% improvement.
"Roughly 90-95% of patients significantly improve with treatment. Due to frequent relapses often observed when antibiotics or herbal therapies are stopped, the goal of treatment is to lower the pathogen burden, balance the immune and inflammatory responses, and address all fifteen of the differential diagnosis (listed below) so that individuals may attain better health. A true "cure" may be possible in early Lyme, but is not frequently seen in late Lyme. However, this does not mean that patients do not attain excellent results and have excellent health after treatment. It simply means that there may be a small number of Borrelia or other co-infections left in the body, and the immune system must be working properly to keep them in check."
I choose to focus on 90-95% significantly improve and "excellent health". I think those are the key messages.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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Six... I would agree that Pilates is probably the perfect exercise for Lyme patients!
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SForsgren
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I started Pilates about two months ago and it has been very good for me. I would say that I think it is good to work 1:1 with an instructor for awhile that can tailor the program to our needs. It can be intense and I think one needs to work into it. I've learned myself that it is much harder than it looks.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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posted
Or was the message that if the current guidelines were followed, the relapse rate would be that high. Also take it into context.
Most people with early disease are not always going to be paying for or needing a Dr. H. He's seeing some of the hardest to treat cases I would guess and if you listen to those that have been through treatment for years, I would guess the rate is that high until the right combo treatment is found.
Not all LLMDs believe in supplements or herbals or detoxing. Some believe that they actually inhibit the absorption of antibiotics and should only be taken when there is a deficiency. Even Vitamin D can make abx less effective even though the end result could be that one's energy level and strength is increased. So you may feel better, but are not working long term on the main problem.
While each battle is an individual one, we all have many similarities, but have to fight our own way. Listen to the advice of your treating Dr. and follow the protocol or at least fill them in on the stuff that you are doing on the side or you may be hurting rather than helping.
Be Well.
Posts: 43 | From Upstate NY | Registered: Jul 2009
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chiquita incognita
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quote: "Not all LLMDs believe in supplements or herbals or detoxing. Some believe that they actually inhibit the absorption of antibiotics and should only be taken when there is a deficiency. Even Vitamin D can make abx less effective even though the end result could be that one's energy level and strength is increased. So you may feel better, but are not working long term on the main problem."
A belief is only a belief. The key thing is to check out what the science itself says. And what history has repeatedly born out.
Many mainstream docs are prejudiced and frankly brainwashed against naturopathics. They believe that their own side-effect-causing drugs are the only way to go. They are uneducated about naturopathics.
I can only say that when I was environmentally ill, the absolutely only solution was naturopathics. Mainstream has nothing to offer, not even a diagnosis except for "it's all in your head", just like with lyme.
I know that doctors can't know it all, it takes way too many years to study in med school and nobody can specialize in everything.
But to adopt a prejudice and tout it as truth makes me really mad.
Doctors have a responsibility to their patients.
I have seen alternatives work in my life so beautifully where mainstream failed and only made me ill. I am seeing it work now.
For the relapse rates with lyme, I frankly think that the herbs have a lot to offer us. The more I read on this forum, the less convinced I am of the working of abx for the longterm. I also see a certain percentage of people here suffering from abx side effects to gut and immune health alike.
The herbs support immune function and this in turn helps to heal the body.
Buhner also writes about knotweed aiding the delivery of abx to areas of the body where the abx otherwise don't reach. Skin, joints, brain, heart....this is why there is relapse. *When herbs are Not used!*
If herbs are used, solo or in conjunction with mainstream meds, then there may be less relapse rates and more hope.
Maybe to kill off bugs is not the sole answer. Modulating immunity may be a big part of the key, and may be our hope.
People have argued that if the bugs outwit the immune system then there is no hope in modulating immunity.
I think that reflects an oversight. No way can we get well or remain well if the immune system is dealing with such a tricky monster....without any support!
Support the immune system, and it will be better able to fight the bugs.
Sometimes I wonder if the bugs only succeed in depressing and outwitting the immune system, because it is "Down" to begin with.
Yes the bugs bring it even further down, but maybe they couldn't succeed if immunity was healthy to begin with.
Food for thought. And it would be very interesting to have further studies done about this.
In fact I think I read something in Buhner's book about it, that those with a healthier immune system *are* able to fight off the bugs after the initial bite, and are less prone to developing the disease.
I say "less prone" because nothing is ever a guarantee. But it surely is an aid.
That's my thinking. This is not medical advice ,only a layperson's brainstorm, and I am not a doctor.
posted
Lymetoo, I think your point about the lack of detoxing and herbs from 2000-2004 has some legs to it. Seriously, how many people here talk about adding all of these herbs and other stuff to their protocol just because others here tell them to. But yet, many if not most here are still ill. Now there's a correlation that can't be dismissed.
Not to say that abx are the only answer, that was not my point. My point was that you can't self treat because someone else needs magnesium, doesn't mean we all do. Did you know that magnesium in someone who doesn't require it actually produces what you are trying to combat in some cases (like mine).
Example: Antibiotics (Tetracycline antibiotics) interacts with MAGNESIUM
Magnesium can attach to tetracyclines in the stomach. This decreases the amount of tetracyclines that the body can absorb. Taking magnesium along with tetracyclines might decrease the effectiveness of tetracyclines. To avoid this interaction take calcium 2 hours before or 4 hours after taking tetracyclines. Some tetracyclines include demeclocycline (Declomycin), minocycline (Minocin), and tetracycline (Achromycin).
My point is don't self treat based on someone else's instructions. People are so desperate to become well that they are trying to throw anything at this disease and hope that it works. We all want to get well, but the absolutes that are pushed on people looking for answers is bothersome to me. If someone says, I have foot pain, someone says, "You have bart!" Truth is we don't know what any of us have for sure.
My Dr. says "lyme-like" illness meaning it could be lyme, could include co-infections, could be something that no one has found yet and that's why everyone is still sick. And he doesn't believe in fibromyalgia. He says it is caused by something else so he is not dismissing lyme, just saying it's more complicated than that.
BTW, I am not on any supplements, I drink as much water as I can to "detox" which I just believe is pushing through all of the things that I consume in a timely manner, and I am improving. I just work 10-12 hours a day in my business because I refuse to give up the life that I have strived for so I don't get enough rest to really heal fully. Some day I will take more time and accept more aggressive treatment.
Keep a positive outlook and stay active. Love your friends, family, and don't beat yourself up over how your life has changed. Don't wallow in your lyme world. Get out of it or you will feel consumed. There's a life away from lyme even for the sickest of us. Take advantage of it.
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posted
Love especially the last paragraph, Eliz! Very important.
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CherylSue
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Yes, Eliz, well said.
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Haley
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Wow, this post is depressing as I am getting ready to fork out some big bucks for intensive IV treatment.
I also think that not many doctors have focused on the biofilm until recent years. If they find a way to get rid of the biofilms this will make a difference.
Pilates is the best strengthening tool around. It will strengthen parts of your body that you didn't know existed.
Six - treating strep in the blood is as difficult as treating Lyme. I have been trying to get rid of it for almost 2 years.
I've come to the conclusion that prayer and a belief in something bigger than ourselves may be the key to finding answers. IMO
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Rivendell
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Everyone has made good comments. They are all valuable. We each have to find what works.
When I read "Cure Unknown", I found it interesting that so many people who were mentioned in the book could only stay well if they remained on a maintenance dose of antibiotics.
But, the author was told by Dr. B to take her antibiotics until she was well, then go off of them and allow herself to get really sick and hit bottom. He told her to then restart the antibiotics and stay on them until she got well and then go off of them again. He told her to repeat the process three times. He said that was how HE got well. She took his advice, and she got well too.
So maybe that is needed in some cases. But everyone is different.
Chiquita, I agree so much with what you say also. I am doing my best to follow Buhner, as natural healing has always made sense to me.
Also, this illness can affect our thoughts and behaviors to the point that being positive is not always possible.
We have to be patient with ourselves and patient with others who are refusing to be patient with us.
Hambone
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There are two ladies here where I live who both had Lyme more than twenty years ago. One lady went out of state for treatment in the 80's.
Both of them did only abx's, and neither one of them has ever relapsed.
One was sick for 7 years before being diagnosed, the other maybe 6 months.
But once they got better, they stayed better.
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chiquita incognita
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Rivendell, love what you said about patience. Yes, thank you!
And Eliz, please know (I am going to surprise you) that I agree with you in certain respects, although in my experience herbs have helped me where mainstream medicine has failed, in certain areas. Still, many of your questions are very well thought out and it's important to address them.
Everything is individualized, and there is no one-size-fits-all for any protocol, of whatever modality.
Further, there is such a thing as overdoing supplements and yes there are toxicity ranges (as well as deficiency symptoms, etc). You are absolutely right.
When I took herbalism courses we learned to target things to individual body types. It's not about hard and fast rules, it's about individual needs.
And yes, some drugs/herbs/nutrients can interact. In the drug-herb interaction seminar I attended with the co-author of the book below, he said that very few herbs interact with drugs. The book below therefore is mostly about nutrient drug interactions but does discuss a few herbs:
For anybody who is interested, the book Herb, Nutrient, and Drug Interactions by Stargrove/Treasure/McKee (printed 2008) has been praised by NIH researchers and other docs alike for being "Exhaustively thorough" about the science and for being objective. It contains info about which interactions are negative and to be avoided, but also which interactions are beneficial and supportive to mainstream drugs. The co-authors are an MD, ND/acupuncturist and a world-ranking herbalist. Oh my god, does he know his stuff, *much!* better than pharmacists I have talked to. YOu should see him in action, it's pretty darned impressive.
NOTE: Heavy-duty medical terminology is required for reading this book. It's approximately 940 pages.
Another book which mentions drug-herb (not nutrient) interactions in brief and in lay-friendly terms, is Pocket Guide to Herbal Medicine by Karin Kraft, MD and Christopher Hobbs LAc.
Karin Kraft spearheads the Commission E in Germany (their equivalent of the FDA but she is very herb-savvy) and CHristopher HObbs is one of hte world-ranking herbalists with the knowledge of an encyclopedia and 35 years practicing experience as herbalist/acupuncturist. Unbelievable depth of knowledge, he will jot molecular chains on a board the second you mention any herb from any country, tell you which patient in a given study had which medical vulnerability prior to participating, more...
This book mentions herbal constituents, some studies, mostly about how they are used, but here is what is truly handy and unique about this book.
It compares how effective any given herb is to the mainstream medication used in the exact setting. It's absolutely very full disclosure. "Further studies are needed" or "the medication is best used with situation x" or "the herb works better in situation y and here is how/why it works" etc.
The book also instructs you how to do such regimens as herbal body wraps, steaming, when to use tincture and when to use the straight herb, etc plus mentions herb-drug interactions.
This book is really handy.
Earl Mindell's The Vitamin Bible of the 21st Century contains info about supplements: Optimal dosage ranges, toxicity ranges, deficiency symptoms, and other advice. Very good. It's pocket sized, paperback. I think he is a very, very knowledgable nutritionist and may not know his herbs as well as his nutrients,but I certainly give him credit for keeping an open mind. He is considered an authority in nutritional supplements, and was a pharmacist prior to becoming a nutritionist.
No lyme specific herbs fyi in any of the above books. This is good for support in using herbs or supplements as adjunct in lyme therapy like for detox, addressing other symptoms that arise, et al.
Thought this might interest you all.
Best wishes, CI ps again Eliz I agree and really understand your points very well. Well thought out, thank you!
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SForsgren
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I think some of the comments are still being somewhat misinterpreted. The comment about a 99% relapse when stopping antibiotics was not to suggest that IV or other antibiotic therapy is not helpful. Much of treatment is about lowering the burden of pathogens so that we begin to feel better. IV or other antibiotic therapy might be appropriate for some people in accomplishing that goal. It is suggesting though that since all the microbes cannot be eradicated, if you simply stopped antibiotics and do nothing else, symptoms may return at some point in the future.
Here is some clarification I added after clarifying the statement further with Dr. H.:
The figure is primarily in patients who have only done antibiotics alone. However, Dr. H still sees frequent relapses in patients who have done all of the integrative therapies also, including patients who have done well on an herbal protocol, stops it, and relapses. The point here is that we have not completely eliminated the full burden of bugs from the body if we don't treat the infections early on. But if we have done a good antibiotic and herbal protocol, if we relapse, it will generally be with much milder symptoms than when the regimens were initiated.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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map1131
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Member # 2022
posted
I know the day I wake up and this nightmare is behind me.....I will never turn my back on it. I don't trust it, I think it's like a snake in the grass, waiting to strike. Too many people with stories of relapse.
I don't mean to sound negative. I know Tutu has been blessed with great results. I know there are many who have made it to the otherside. I strive this for myself.
My rife machine will be with me until it breaks down and can't be fixed or I hit the lottery and buy something to replace it.
I might go back to seeing an LLMD again some day? I'm leaving things open and always looking for the next piece of the puzzle.
I've not done much with herbs. I really haven't accepted the "no white diet". There are roads I've not traveled. I haven't done a coffee enema yet. lol
But I won't give up.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
Wow- I really started a conversation!
I think, once off abx, herbs are a good way to maintain. I also think it's important to address biofilms, and the cyst form of lyme.
I was 100% and relapsed. I got to 100% with just abx-very few supplements, I did exercise and rest.
I think I had a few bugs left-probably would have been kept in check with herbs, but I didn't really know much about them
Hoping this relapse passes quickly, and I get back to 100%- wiser this time!
Posts: 1276 | From maryland | Registered: Jan 2009
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posted
Or is it, was it truly LD? No 100% positive testing is available. So it's just a guessing game really. many many people on here think that their sickness is LD including myself, but is it really. No one, no article, no doctor can give me a correct answer.
-------------------- HERX is a Four Letter Word! Posts: 716 | From If you're going through hell, keep going......Winston Churchill | Registered: Apr 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
I think this is the age of the SUPER BACTERIAS and BUGS(real bugs, like insect bugs).
Look at what is happening with the Bed Bugs right now. I sent my daughter and 2 grandsons to in-door waterpark/hotel for one day of fun and together time.
She comes home with a bed bug bites on her arm. Sure enough I call them to report. They shut down the room. Bring in the pests people the next day and call me with yes they found bed bugs in this room.
Of course I freaked. I didn't call them until I calmed down. I was worried about them bringing home (they live with us) in their bags to live with me. Oh my goodness.
I do not believe at all that bed bugs can't/don't carry bacteria, parasites or viruses that can make people ill. I'm not stupid.
They are blood suckers. My brother just had a severe skin reaction to bed bug bites in his apartment building. He's diabetic, COPD, heart disease, oxygen user.
He was covered in a full body rash. We didn't know why. I went to visit him and he showed me his rash. I made him call doctor and they couldn't see him until June.
I made him go to ER. With his health conditions and his itching and scratching I knew it could be serious for diabetic.
They had no clue why. Gave him steriods galore. His girlfriend figured it out that night when she went to climb in the bed.
Oh my goodness. So once again I'm worried I carried one of the sob's home in purse or the box of old papers I put in the backend of my car.
Lymetoo, good question...are you sure you weren't bitten again?
Bigstan, what about those of us that know we were bitten? Seen the tick? Or Doctor said it's just a spider bite? Tick bite, no need to worry, one doxy and you're fine.
Seek, I really don't think we are a group of head cases. It's very real. You?
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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beths
Frequent Contributor (1K+ posts)
Member # 18864
posted
Lymetoo -My Dr asked me the same thing. I don't think so-I rarely walk on grass, I don't evenleave my house without spraying myself with tick spray...I guess I'll never know.
I have the same symptoms I had first time-so I think I didn't treat lyme enough. We treated bartonella-I didn't do a lot for lyme.
Posts: 1276 | From maryland | Registered: Jan 2009
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