posted
I'm just wondering if any of you here know anyone that had chronic neuro Lyme that was actually cured (as opposed to having a period of remission followed by a relapse)?
Posts: 177 | From Ohio | Registered: Aug 2012
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
I'm hoping to get there.
You may want to look for the success stories under General Support to get some more info.
Posts: 1954 | From Illinois | Registered: Aug 2007
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I am a health nut, but I was before I got sick ..... both my parents and both my sisters are, too. I like being fit and optimally healthy, so I eat well, exercise and get enough sleep. But even if I go out of town and eat a bunch of garbage, don't get enough sleep, and drink alcohol (I've never been a heavy drinker, just talking a few drinks ....), I still don't have symptoms.
Last spring I got a kidney infection, went on IV rocephin for three days then cipro for four and did not have any problems whatsoever with Lyme and co.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
Oh, and my daughter is "cured", too. She was not as severe of a case as me, but she did have chronic Lyme Disease.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- SixGoofyKids,
I wonder if you could expand on how you found success, finally. The Bionic 880 treatment was the pivotal factor regarding the infection-connection for you (and good self-care, too), if I recall correctly.
It may help others to know that. Did I state the method correctly?
And would this be the correct site to explore? How else would one go about this approach? Do they have to go to Germany are there now doctors in the U.S. who treat?
(It's not within my means but) I ask for others who may want to put their resources to this while they still have resources.
Is there a better thread or better site link than these?
posted
Yes, it was the Bionic 880. I was spinning my wheels on chronic antibiotics. I thought I'd try something new, so went to Germany for Bionic 880 treatment. I continued the treatment at home for nine more months (then I treated monthly because I was scared of relapsing, but once I realized I wasn't going to, I stopped).
I did many things for cleansing. Coffee enemas. Hulda Clark liver cleanses. Parasite cleanses (pre-Germany). Chelation (pre-Germany).
Interestingly, my daughter was in remission from eight months of abx treatment. She would have minor symptoms during menstruation. She wasn't on any medication for it.
When I came back from Germany and she treated with the Bionic and stopped having symptoms during menstruation.
I think it's best to go to Germany because he does detox IV's and uses nosodes that aren't available here. Even in Germany it's only legal for doctors to have them. Here, only specialty labs can have them. I'm not sure what they are due to the language barrier.
It *can* be done here, though, just not as quickly. You can use blood as the "nosode" (it's nto a true nosode, it's just a vial of blood), but you need to start out with Lyme nosodes. Blood is too strong to start with.
People here generally use the PE1. It's less expensive, but as strong as the Bionic. You will want to learn to muscle test to do it on your own.
I know there are doctors here who own Bionic 880's, but I know of none treating like Dr. W in Germany.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Thanks. About links to guide folks, it would be great if you could look over those posted above and add to be sure the very best are here - then I can also update that in the ND/alternative links.
If going to Germany / Bionic 880 is not an option for some, then for the PE-1, is this the best link for someone new to this to explore?
posted
I would consider myself cured at this point. I got back from Germany at the end of June to only continue to get better than 100 percent (which I know seems impossible). I was not well before I got sick I think and because of Lyme I had to get really healthy... I was on abx for four years... two of which were pulsed and two of which were a VERY heavy protocol. Wishing you all healing and health! Happy Labor Day!
Posts: 859 | From Southeast | Registered: Mar 2011
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posted
Annxyz - I think Kimmie has had good results, Brussels and her daughter are cured... I am on my way if not already with the Bionic which you can get a used one for less than a new one.
Posts: 859 | From Southeast | Registered: Mar 2011
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posted
willbeatthis, I think that what happens is that we reach what we *think* is 100% only to find out that 100% is even better.
That still happens to me once in a while .... though I have trouble believing it can get better .... I did Spinning sprints today with hubby and teenagers and felt as good or better than they did when we were done. I don't know that it can get any better for me at this point!
But you may find over the next couple years that 100% keeps getting better and better.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I don't even use my PE-1 any more. It did not do anything for the infections for me. It is under the couch gathering dust.
I began to really improve when I started treating protomyxzoa with diet and stromectol (ivermectin). I also am treating methyl cycle mutations and I take LDN.
Protomyxzoa is not part of the usual Lyme disease list of infections which I treated. I am not taking any meds for those and haven't for months. I don't have symptoms for them either.
I don't want to say I am cured but I have been in remission for borellia, babesia duncani, bartonella and ehrlichia for over 6 months - if having no symptoms and being off the drugs that treat them is remission. I don't take herbs for any of them either.
As for protomyxzoa, it cannot be cured. It is a lifelong infection. Hopefully I will eventually be able to control it with diet.
-------------------- 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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posted
Nefferdun, Would you be willing to sell or rent your PE1? I am in Billings. Thanks.
Posts: 123 | From Montana | Registered: May 2009
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posted
So, from the responses so far, I'm seeing that out of the 28,000+ members on this forum, only a handful feel like they've been "cured" and that was all with photonic therapy? Does anyone with long-term Chronic Lyme feel like they were cured with anything other than photonic therapy? If photonic therapy works, why haven't more than a few people been cured? Surely the cost of the PE-1 or even the Bionic 880 (including the trip to Germany) is a lot cheaper than decades of trips to the doctor, missed work, and expensive anti-biotics.
If a cure isn't possible for most people, what is a realistic best result that can be expected?
Posts: 177 | From Ohio | Registered: Aug 2012
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
I think many, many people leave. If you use the search function (and I have a number of times)
you see lots of old posters who are not around.
After being buried in life with Lyme, having it rule your world during treatment,
I would like to think a majority of people got better, enough to move on with their life and live.
I wonder about myself- when the antibiotics are all over, I hope I can accept the state I'm left with content and go forward with acceptance of remaining possible limitations.
Treat enough to get improvements, and stop it from progressing further.
Certainly the LLMD's have graduated patients.
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Patriot, now that you have changed your question to people cured of "long term chronic lyme" (without the "neuro" in there) I will report that I got rid of lyme and babs and bart over 7 years ago now.
That's when I completed my treatment. And, these diseases have not come back. That in spite of a few years of terrible stress, a herniated disc that caused me to have to get two epidural injections of steroids, and other short steroid treatments for a sinus infection.
I got rid of this disease by going to a doc who followed the Burrascano protocol--high dose combos of antibiotics, plus supplements and the weight lifting that Burrascano says is essential.
I sent 3 of my friends to Burrascano type doctors and they all got well also.
I had undiagnosed lyme for at least 10 years before I began to be treated.
Of my 3 friends, one seems to have had congenital lyme. Started treatment at age 50. The other friend had the fibro diagnosis for years. The final friend was sick about 2 years prior to diagnosis.
So, all of us had lyme for a long while and we all got well with the Burrascano protocol.
These friends never came on LymeNet and posted. I think that the very sick often come here to get help for their problems. Those who do well on treatment don't feel a need for anything but their doctor's instructions.
So, I really don't think you can draw any conclusions from the responses to your post as of this date.
In my almost 10 years of helping lyme patients, I have seen all of them improve and go on to have a normal life. I have seen 1 that needs to take meds one week per month to have that normal life, and the rest are either out of touch or still treating and improving.
So, from my experience, the statistics are very, very hopeful.
But it ALL hinges on getting very good treatment. Usually going to insurance-taking doctors won't get you there.
The tougher the case, the greater the need for a top notch lyme doc. The doc is the key to getting rid of this disease.
I have seen it over and over. If I would have settled for what my second lyme doctor said, I would still be on meds to this day. He said that it looked like I would just have to take meds the rest of my life.
But, I had heard Burrascano speak and had studied his Guidelines. I was not willing to give up to that future until I had gone to a doc who treated me just like the Guidelines said.
I switched docs and in 13 months I was finished with my treatment. All I needed was a doc who knew to treat me for coinfections the Burrascano way and how to properly treat lyme.
Many, many doctors treat lyme, but most of them don't know enough to get rid of it for a person.
If everybody had the funds for a top notch doc, there would be a lot more success stories on LymeNet too. But, sadly, not all can afford such care.
None of this says anything about what percent of people could actually be cured. It says a lot about the effects of the lyme war on the people who are suffering.
Just my perspective.
Posts: 9931 | From Maryland | Registered: Dec 2007
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I'm one of the old timers still here (2007). I have been on ILADS treatment with the top docs for 5 yrs as well as many alternative therapies when I took a year off treatment. I can't stop meds or I relapse in 3 days. In fact, I relapse on them (bad on, worse off). I have been fighting what the LLMDs all told me was mostly bartonella and Lyme for all these years, with limited improvements.
At this point I am wondering if this will ever change, but the discovery of other pathogens possibly blocking successful treatment, or treating parasites may be key, because obviously the top dogs are missing something (which they agree but shake their heads).
My point is not everyone gets well with the ILADS docs even if they are top notch.
Posts: 3528 | From US | Registered: Apr 2007
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posted
Thanks SixGoofy and TF... both of you are heroes -- Both got me here to where I am today and I am ever grateful... Patriot M, I was under one of the best docs in the country and my meds were costing me 3500 a month out of pocket (meds and supplements) and I could not forsee working hard enough to make that happen forever... Germany was my miracle and I have lots of folks to thank for it! This is not to say that I did not do everything in my power on the meds to get healthy, trust me I did... food allergies etc... no drinking whatsoever, burrascano guidelines, but when I reached the point where it was time to go off and I had always relapsed before... I felt there had to be another way.... This was the right step for me. And yes, TF and many friends are graduates and living wonderful lives of top Burrascano type docs... That is key in my mind if you are going that route (meds). Blessings...
Posts: 859 | From Southeast | Registered: Mar 2011
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
I'm insprired by your post too, willbeatthis. Have not responded much to homeoathics so thought photon treatments wouldn't work for me (isn't it considered homeopathic)?
Posts: 3528 | From US | Registered: Apr 2007
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posted
CD57, it's not the same as homeopathics. You can use the light to treat homeopathically. If I take homeopathics and want them to be stronger, I use the photons to make them stronger, and it does. But the treatment for Lyme isn't the same as using homeopathics.
My experience is very much like willbeatthis. I saw a top LLMD, was on combinations according to the Burrascano guidelines, and did adjunct therapies as well (herbs and supplements). I could never stop the meds, and I didn't reach full health on them. I was concerned that they would stop working over time ... not that they were getting me well, but I did feel much better on them than off.
And same for me. I avoided gluten. I exercised (weights, stretching), didn't drink, and followed the guidelines in every way possible. I have read them at least a dozen times to be sure I wasn't missing something. I think some bodies respond to them and get better and some never reach wellness. Just like any treatment.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
You need to use your rational mind to decide if you are going to invest nearly $2000 for the PE-1 and nosodes. The PE-1 is LED light, not low level laser which is much more effective, and it costs $1600. Such devices have been approved for increasing circulation which speeds healing. They have been helpful in reducing pain as well. It can be pushed further, but it is not scientifically proven, that the light can trigger acupuncture points.
The PE-1 did not reduce my pain from the infections but it did seem to stimulate endorphins because I felt calmer after using it. However LDN stimulates endorphins and it costs $18 a month. Endorphins are known to stimulate the immune system.
Nosodes are homeopathic remedies that are very costly. Before I got the PE-1 I tried taking them orally according to the instruction and they had no effect at all - nothing.
With the PE-1 I was told to put the nosodes into clear vials (I had to buy the vials too) and tape them to my solar plexus. Then I would shine the PE-1 on acupuncture points on my body. I was told to be very cautious and expect a dramatic herx. Nothing happened.
So I did it longer the next time. Still nothing happened. Finally I was sitting for hours with the PE-1 and the nosodes with no effect. I was still sick. I was not better at all. I remember I even got up in the middle of the night during a lunar eclipse that coincided with astrological conjunctions (yes I am naturally out there) and was certain this was the most powerful and precise time to apply this energy. Pain still there, insomnia at it's worse.
I was told to use my own blood because that would have all the pathogens I needed to attack so I tried it but again, no difference. So I gave up on nosodes but still used the PE-1 daily hoping to get some improvement from the endorphins. I sat for hours with the thing balanced on various parts of my body, especially my head because of my brain fog. I felt calmer but not the lease bit clearer in my mind.
Then I went to Seattle and learned about methy cycle mutations and my focus shifted. About the same time I began to connect my remaining symptoms to protomyxzoa. I started the diet and then stromectol. I saw huge improvements. Remember I had used my blood as a nosode so you can't say I just wasn't using the right nosodes in my PE-1 treatment.
I have read online of people going to Germany that were not cured. One woman emailed me saying she had invested tens of thousands of dollars trying to get the right nosodes for herself and her family. It did not work.
I have never read of anyone that did only the photon treatment with no prior treatment with abx, say that it cured them. It is possible that they were close to well and using the light to stimulate endorphins got them over the last hump. I don't know.
I am not trying to bash anyone but it concerns me that people can spend money they could better use going to the best LLMD and paying for the best drugs, which is also expensive.
If there are 25,000 members on Lymenet, we sure are not hearing from them. That means a whole lot of these people have gone elsewhere for any number of reasons. Maybe they got well and just didn't tell us! The truth is as I get better I am very reluctant to say I am well because I know how easy it is to relapse. I don't want to disappoint myself or anyone else. As I feel better, I post less and less. If one day, I am not here posting, maybe I am not feeling sick. Is that well?
-------------------- 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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Every body is different .... I'm glad you found to address methyl cycle mutations. I, personally, don't think that the photons address protozoa (either the one you have or babesia). I think my body resolved babesia as I got stronger. That definitely was the last lingering infection for me judging by symptoms.
I was not close to well, at all. When I went over to Germany, I had gotten so sick off meds that I didn't even know whether I'd be able to make the trip on my own. I spent a couple days in bed once we got there, except to go to the doctor.
The Bionic doesn't do it all, but it does help with borrelia. The other things have to be addressed as well.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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quote:Originally posted by PatriotM: So, from the responses so far, I'm seeing that out of the 28,000+ members on this forum, only a handful feel like they've been "cured" and that was all with photonic therapy?
- I didn't join in because I don't feel I had true "neurolyme" .. mine was mostly arthritic in nature. That said, I also believe that we ALL have some amount of "neurolyme."
Anyway, I've been off Lyme treatment for 8 yrs. I have other problems, but don't feel that Lyme is a big factor anymore.
I treated for 4 yrs with abx, then about 4-5 yrs with Rife to keep it away.
PS .. There are only a few hundred of our members who post here.
and PS .. I had babesia and beat that too.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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posted
I think it is so encouraging to share our experiences as I think this is a very individual disease. Had this information not been posted, I may not be well. So, thank you all for sharing your experience and helping others... that is the real beauty in life I think.
Tutu... you are an angel and have been so supportive to so many... I always remember your story... and your WIN!
Blessings...
Posts: 859 | From Southeast | Registered: Mar 2011
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lymeboy
Unregistered
posted
The "Neuro" is really what seems to be the toughest and most relapsing form of Lyme. I have days where I am convinced there is no end to this.
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posted
Lymeboy... Please hang in there ... there is an end. One thing I have noticed with this illness and any illness I believe now... You have to hold on to the fact that it can be beaten... Have you read Dying to be me? It is an amazing book about a girl that had Hodkins Lymphoma and her organs were shutting down, she had a NDE and came back and knew she had to come back with new energy and the cancer was gone in four days... or something to that effect. In Germany, Dr. W was big about getting us over our thinking constantly about Lyme.... In essence, it was important to release it... I know the meds helped me so much... And I would just keep doing whatever works... and don't forget there are always other things to try... Blessings...
Posts: 859 | From Southeast | Registered: Mar 2011
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posted
Lymeboy, my cognitive symptoms were very, very bad. I could give example after example .... but I'll give you just a couple.
My kids regularly would call for me to pick them up from an activity. The school is just down the street, so I didn't have to worry about getting lost (in general, hubby didn't let me out of the house alone because I'd get lost and confused). So, they'd call, I'd say I was on my way. Then I'd forget to walk out to the car. Ten minutes later, "Mom, did you forget to come get me?"
The other isn't really an example, but an explanation. I wouldn't know where I was when I was driving. I'd turn on roads I'd never been on for no reason whatsoever. I wouldn't know how to get where I was going.
My facial recognition was very bad. I never could remember new people. I didn't even know who my neighbor was, she had to tell me.
I also had terrible nerve pain and fibromyalgia. I would never know what would hurt when I'd wake up.
My LLMD was thinking I might need IV. The more severe neuro symptoms went away with parasite treatment and bartonella treatment. Parasite treatment was really a turning point for me in a huge way.
I had to work hard to get my mind back. I figured the brain is a muscle, so to get it back, I needed to use it, and that's what I did once I got the ability to use it back.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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quote:Originally posted by willbeatthis: Lymeboy... Please hang in there ... there is an end. One thing I have noticed with this illness and any illness I believe now... You have to hold on to the fact that it can be beaten...
That's the question...is there really an end for most people with chronic neuro lyme? While I appreciate the fact that it is necessary to remain positive, there's a difference between being positive and being delusional. For example, if a person lost their leg in an accident, they could believe every day of their life that their leg would regrow, but it wouldn't happen. Likewise, I'm not at all convinced that most people with chronic neuro lyme ever get cured.
One of the problems is that the symptoms are so erratic. For example, I'm on day 7 of the Cowden Protocol and my symptoms have gotten MUCH worse in the past 2 days. Is that herxing or are my symptoms just worse. I honestly don't know. If my symptoms are all gone a month from now, was that the Cowden herbs that did it or did my symptoms just get better. Is that a cure? All of my symptoms were gone after my lengthy round of IV and oral antibiotics 10 years ago, but they came back.
There seem to be a lot of people on this forum who have had Lyme for a long time and are still sick (including me). If there is a cure, why aren't we all taking advantage of it? What is that cure? One person says the answer is the Burrascano Protocol; another says RIFE machines; another photon machines; etc, etc, etc. To make matters worse, traditional medicine says that chronic lyme doesn't even exist. Posts: 177 | From Ohio | Registered: Aug 2012
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posted
I've been of the opinion that a good attitude can't make you well, but a bad attitude can keep you sick. I KNEW, I mean really KNEW that I would be well one day. I don't think that without that HOPE I would have ever gotten here.
And, it's a different mix of issues for everyone, so there isn't one across the board cure.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- PatriotM:
Q: "There seem to be a lot of people on this forum who have had Lyme for a long time and are still sick (including me)."
Q: "If there is a cure, why aren't we all taking advantage of it?"
First, about "cure" - sadly, we have to burst our bubble about that idea. Still, many have gotten better, so much better that, for them, they are essentially cured.
Others have seen great long remissions.
Others know how to manage but are much better.
No one has the same set of infections. And each body seems to be damaged in different ways so support methods can take a while.
Why so few reach remission?
1. Complexity of this set of deep stealth infections and the complexities of the conditions it causes on top of the symptoms.
2. Lack knowledgeable ILADS educated lyme literate doctors in all areas of medicine.
Even if each LLMD or LL ND has their own ideas and knows how to individualize treatment for each person, as is required - it's vital that they are fully "educated" with all the research, all the detail such as presented over the years at ILADS conferences, etc.
3. Money. Quite frankly, this is the THE main issue.
By the time most of us have seen a dozen or more doctors, hoping they have knowledge and skill required to help us (but being insulted and kicked out instead) . . .
and then have sought whatever care that might be of support (even if not directing treating infections) . . . and this can help us to just hold on . . . well, traveling to see a LL doctor may be just out of the question.
Some have become home-bound, so going anywhere can be out of the question.
We cannot manufacture money. Many lost credit cards long ago with bankruptcy.
I spent all available funds, sold everything worth anything long before a LL ND finally started practicing in my state (which will allow no MD to treat chronic lyme because the state medical board says it simply does not exist).
I don't know if all the money in the world can "cure" lyme or bring about a good solid remission but it sure can help to have options.
3. Research is thwarted by the IDSA, CDC, NIH.
4. Insurance companies, in bed with the IDSA, CDC, and NIH are not about to help with comprehensive treatment.
5. Naturopathic treatments that are vital to patients' livers surviving both infections and treatment protocol is not available in every state.
Each state needs to license NDs and insurance needs to help us out here.
Most importantly:
6. ILADS needs to be recognized as the expert group to train more doctors so that each state has dozens of LLMDs and LL NDs.
States need to allow them to treat according to their best determination for each case. If this were allowed, their costs could go down dramatically.
Insurance needs to step up to the plate on this, too.
Most lyme patients do the very best at self care habits. We give up sugar, wheat, all processed foods and beverages. We are doing our best. But there are still powerful forces against those with lyme "complex" and those who treat it. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Yes Six Goofy... I had this same KNOWING.... And I agree totally that attitude is NOT everything... I still HAD Lyme... and Gosh knows I needed the meds and everything else I did to get here. I think it is just a matter of persistence and doing the best you can under the circumstances... I understand your frustration Patriot as there were many a time when I did not know if any of it was worth it... I am thankful for this board and the people that kept me encouraged. Hang in there...
Posts: 859 | From Southeast | Registered: Mar 2011
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Patriot:
Find the best ILADS educated LL doctor you can find.
Based on TF's success with those who follow an aggressive Burrascano protocol (yet tailored to your case), you might go that direction.
Scale down all expenditures possible. All.
Follow the self-care guidelines by Burrancano - and go beyond that to provide the very best nutrients to your body with diet, key supplements to protect your liver, etc.
Forget all this other stuff now, the politics, the guessing game, and just focus on YOUR treatment YOUR routine, etc.
I now you are researching the best path - and we all do that each day so we can learn. However, if you can get a great LLMD, you don't have to do all this stuff and can focus on the task at hand.
That, alone, is a huge job.
Yes, indeed, it is possible to get much better, so much better that lyme will someday be just a blip on the screen. In the meantime, get the most intelligent doctor you can find who has stellar experience.
It may still take some time to find the right doctor and the right plan - and that will change along the way - but I hope you can settle on that and get started (or re-started).
Good medicine is what works. And that can look very different from this perspective.
As much as I suggest ILADS educated LLMDs, that also includes those in other areas such as with the BIONIC 880 in Germany. Someone who really knows how lyme & coinfections work, etc.
Success can come about in different ways. RIFE might be another avenue to explore as some have seen successes there, too.
PARASITES need to be addressed.
HEAVY METALS need to be addressed.
OTHER infections need to be addressed.
Most LL doctors know this and those are both key to success of lyme "complex" treatment.
Easy answers there are not, however. And, for anyone with little or no funds . . . there are still ways that can help and some that may succeed.
I'm working on that.
I'm not quite down to nothing but even if all one could do would be a few cloves of fresh organic garlic a day, that has some power to it (if tolerated).
We just do the best we can. -
[ 09-05-2012, 04:32 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
This board has been such a help to so many and Keebler... you deserve an award!
Posts: 859 | From Southeast | Registered: Mar 2011
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AuntyLynn
Frequent Contributor (1K+ posts)
Member # 35938
posted
Ray Kehrhan of CT - a former UCONN professor, is writing a book about his neuro lyme recovery.
He had undiagnosed Lyme for 22 years, and spent his days "near catatonic" on a couch, until someone suggested he see an LLMD in New Haven.
He sought treatment at Columbia University Medical Center (famed Lyme psychiatrist Dr. F), and after 9 mos. on IV abx, registered to run in the East Hartford Triathlon this spring!
The news story is in these threads somewhere. You might try searching his name.
Never lose hope! Recent Dr. F and Dr. S studies point to long term IV abx for neuro lyme. (Dr. S says 25-52 weeks of IV is necessary to overcome a neurological Bb infection.)
And many former neuro sufferers report that the "white lesions" on their frontal lobes diminished - or disappeared - after treating with long term abx!
I wish you every success!
Posts: 1432 | From New Jersey | Registered: Jan 2012
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quote:Originally posted by AuntyLynn: And many former neuro sufferers report that the "white lesions" on their frontal lobes diminished - or disappeared - after treating with long term abx!
That's very interesting. I didn't know that "white lesions" were indicative of Lyme. I've had these lesions on my MRI's since at least 1991, including the MRI I had only a couple of months ago. Thanks for the info.
Posts: 177 | From Ohio | Registered: Aug 2012
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AuntyLynn
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My mother's neurologist said its an indication that the myelin sheath, which cover the neurons (brain cells) is deteriorating.
It's caused by the infection. Control the infection, and the myelin has a chance to regenerate.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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posted
Thanks AuntyLynn. I'm going to bring that up with my LLMD during my next visit. I've often wondered what these "white matter lesions" mean. My latest MRI says that I have "a few scattered nonspecific T2 hyperintense white matter lesions noted supratentorially which are stable in size and number". It's always been frustrating to me that they find these "lesions" but all the expensive neurologists/specialists I've seen couldn't say what they mean or how they relate to my medical problems.
Posts: 177 | From Ohio | Registered: Aug 2012
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quote:Originally posted by sixgoofykids: I've been of the opinion that a good attitude can't make you well, but a bad attitude can keep you sick. I KNEW, I mean really KNEW that I would be well one day. I don't think that without that HOPE I would have ever gotten here.
- VERY, VERY TRUE!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Catgirl
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Six, you are so inspiring.
What did you use for parasite treatment?
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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AuntyLynn
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Patriot -
You are lucky some radiologist didn't "opine" that you have Multiple Sclerosis from the "white lesions" - that is their typical misdiagnosis of these spots. The smarter ones will just keep their mouths shut and say "we don't know."
AuntyLynn
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Here is a wonderful website by a Psychiatrist who herself had Lyme! It addresses a lot of the extraneous BS that neuro Lyme patients go through when doctors are clueless.
See esp. left hand column: Panic Attacks and Lyme (This was my Mom's FIRST symptom!)
Posts: 1432 | From New Jersey | Registered: Jan 2012
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quote:Originally posted by Catgirl: Six, you are so inspiring.
What did you use for parasite treatment?
Humaworm and enula. I also did a Dr. Natura cleanse. I worked hard on repopulating my gut with good bacteria through eating fermented foods.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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AuntyLynn
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Here's another outstanding article - from the Rodale Press, who did a spread on Lyme in May. (Rodale is the country's #1 organic gardening publisher: around for decades, highly respected.)
Off the Charts Anxiety: Is a tick bite making you nuts?
Excerpts: The Clinical Journal of Pain in 2005 found that patients experiencing panic attacks also suffered other symptoms not typical of standard panic attacks�extreme sensitivity to light, touch, and sounds, joint pain, mental fogginess, and migrating pain, all of which can be symptoms of Lyme disease�and those people tested positive for Lyme and babesiosis, which, like Lyme, is on the rise in the U.S. Once treated with antibiotics for both diseases, the patients no longer experienced panic attacks.
Another study published in the American Journal of Psychiatry in 1994 found that 40 percent of patients with Lyme disease develop neurological impairment, which may not surface for months or years after a tick bite. Psychiatric reactions included not only panic attacks, but also bipolar disorder, schizophrenia, dementia, obsessive-compulsive disorder, anorexia, and depression.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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AuntyLynn
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Six -
Did you ferment your own vegetables?
I have a girlfriend who did it for her autistic child. She also made her own Kefir.
If I had a garage or a cool corner of a cellar, I would buy a couple of those old fashioned stoneware pickle crocks and do my own sauerkraut and pickles! (You can buy those crocks brand new on e-bay... but the antique varieties are highly collectible, and $$)
Posts: 1432 | From New Jersey | Registered: Jan 2012
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Yes, I fermented my own and made my own kefir. I also made kombucha. I still drink kombucha, but got tired of making it. I don't make kefir anymore, but sometimes I ferment veggies.
I just make my veggies right in a ball jar. No need to get fancy.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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AuntyLynn
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Just (organic) veg and kosher or sea salt?
(My girlfriend's pediatrician said you won't get the right bacteria with non-organic veg. True?)
Posts: 1432 | From New Jersey | Registered: Jan 2012
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You are lucky some radiologist didn't "opine" that you have Multiple Sclerosis from the "white lesions" - that is their typical misdiagnosis of these spots.
I spent months going to the OSU neurology clinic and they said that my lesions 'were like a criminal that was indicted (of MS) but not yet convicted'. LOL! It would be funny if it wasn't so pathetic!
Posts: 177 | From Ohio | Registered: Aug 2012
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Mathias
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I was dx'ed in 2004, I have no idea how long I was infected. Neuro mycoplasma and probably neuro Lyme as well. The longest I've been able to stay off antibiotics has been 13-14 months. I relapse after that. I've been on antibiotics for 2 years since my last relapse. Making progress but still would not consider myself symptom free or cured. It's a long tough road....
-------------------- Mathias Posts: 1242 | From New Jersey | Registered: Feb 2004
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AuntyLynn
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Mathias -
Have you ever done IV?
Posts: 1432 | From New Jersey | Registered: Jan 2012
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quote:Originally posted by AuntyLynn: Just (organic) veg and kosher or sea salt?
(My girlfriend's pediatrician said you won't get the right bacteria with non-organic veg. True?)
I use organic. I don't know if the doctor is right or not .... the non-organic might be too "clean"?? The bacteria comes from the veggies. That's one of our problems with health, lack of good bacteria on our foods like in the day we fertilized with manure.
And sea salt.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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AuntyLynn
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Thanks so much six!
Cabbage is coming into season. I can't buy commercial kraut because BF is very allergic to sodium metabisulfite (a common additive in "cold cured" pickles).
How long will your homemade sauerkraut or veg keep in the fridge?
Probiotics are just SO important to overall health.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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AuntyLynn
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Thanks so much six!
Cabbage is coming into season. I can't buy commercial kraut because BF is very allergic to sodium metabisulfite (a common additive in "cold cured" pickles).
How long will your homemade sauerkraut or veg keep in the fridge?
Probiotics are just SO important to overall health.
Posts: 1432 | From New Jersey | Registered: Jan 2012
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