Do you have Lyme forever?

Charlie55 said...

meowee said...
It is strange because you do develop antibodies to it, if it shows up in your test. I still have them for an old erhlichia infection apparently if the test was correct. I would think that would give you some sort of protection against a second infection becoming severe or maybe you will fight it off. Many people fight off a first infection and don’t get it all. I remember one of my bosses years ago was out for six weeks with it and in hospital for a bit. She was on antibiotics for several weeks at least.

It doesn't because this isn't a traditional bacteria that stays active at all times allowing for your immune system to completely erradicate it, hence the persister cell borrelia cells that can lay dormant. And from what I remember, it can change and mutate it's genetic composition, confusing your immune system.

http://theconversation.com/lyme-disease-a-ticking-time-bomb-57844

TheConversation.com said...

To survive and establish infection, Borrelia mutates in a number of ways to become invisible to the host’s immune system

Then you have the biofilms as well, plus the borrelia spirochetes working together with the coinfections like mycoplasma, bartonella, and babesia too to keep your immune system suppressed.

This is a very complex disease! But it's really shouldn't be that at all surprising, dormant cells are the reason why AIDs stays chronic, as well as cancer.

And believe it or not, there's a drug that wakes up these dormant cells and kills them for all three of these diseases, aka Disulfiram.
https://www.mdlinx.com/oncology/article/1357
https://www.consultant360.com/story/disulfiram-can-wake-latent-hiv-be-killed-study-finds

Shapiro missed the Memo on this
https://www.youtube.com/watch?v=jsluidiym0w

I guess so did big pharma and the rest of the doctors in the medical system, considering this drug has been on the market since the 1940s...

But hey insurance companies and big profits are more important than human lives, welcome to chrony capitalism and the propaganda it perpetuates.
https://www.courthousenews.com/insurers-accused-conspiring-deny-lyme-disease-coverage/

Makes sense since it is similar to syphillis which can go dormant for many years. Scary stuff. There is one feline virus that can hide completely. FeLV can manifest as a minor event and then hide in the dna with no sign of illness and non positive test and then come out many years later due to stress and trauma. But a large percentage of cats who are exposed clear the virus and are free of it for life while some become carriers.

There is a trial being done for disulfiram:

https://clinicaltrials.gov/ct2/show/NCT03891667

1000Daisies said...
Others have told you this in the past countless times, but there are many who are well without being on abx previously or for maintenance. For some reason, you discount these people - like you have said above, these people are "lieing" or "sugar coating". I'm not sure why you have a hard time believing this.

I'm sorry you can't digest the fact that people embellish treatment like Rife Machines, Herbs, MMS, Vitamin C protocol, laser therapy, etc... But there's thousands of posts saying they've cured themselves from these wishy washy protocols and it couldn't be far from the truth.

I recently read a old post one LymeNet.org about member that thought he was going to cure himself with high doses of iodine, later he was found dead. And many of the members said it was probably the over usage of iodine. He had come up with this notion that high dosages of iodine kills borrelia and that he was going to cure himself. You know if James had Hashimotos, all he could of been doing is raising his antibodies and while he might of been feeling better because his thyroid was producing more hormones, giving him more energy, his immune system could of been attacking his thyroid as well as other parts of his body, then his body eventually just shut down. RIP, but stuff like this happens all the time.
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/68826?#000032
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/68754?#000000

I've given great examples in posts before backing up what I've stated, even talking about when Charlie Sheen and his own Doctor claimed they cured aids.

How many times did Yolanda Hughes claim she was in remission, when really, she probably never was in remission. Ya know she's been treating with Dr. Klinghardt who has some sketchy protocols.
https://themighty.com/2018/10/yolanda-hadid-remission-chronic-lyme-disease-relapse/

Everyone's basing their remission status on how they feel, since there's no accurate bloodwork test to show if lyme is still active in the body. I think I have a right to question that!

1000Daisies said...


If you want your message to be heard, alienation is not an effective communication tactic.

Look, when people get chronically sick, many wish they think they're unique and developed a cure themselves. It makes themselves feel better about themselves. And really sometimes the truth hurts sometimes when someone goes on the forum and tells you that this is going on a lot. I mean look, many lyme patients won't even acknowledge the truth about the biowarfare side of this disease, yet now it's on all the major news websites. One member on here said if the government created lyme as biowarfare, then they must of created time travel as well. I'm sorry some of you don't want to hear my side of the story and you think I'm alienating myself bringing up these issues, but I have a right to give my opinion based on my 1st amendment rights, just like all you have a right to say you've cured yourself with rife machines, etc...

I know many people of religion also tend to go down the route of alternative therapy and while some you may think I'm against that, I'm not. I just think that many stories are embellished, I'm a big advocate of medicinal marijuana and even herbs. Just recently I went to see a osteopath in my home state, Dr. Z in Romeo Michigan, you know what he said, I'll have to start going to "his" church in order to fully heal myself or its never going to happen, lol. I can keep going to all different doctors, but I'll never heal myself until I take on faith! Now is this right? Considering I've only seen 3 LLMDs in Michigan and not the top lyme literate doctors out of state like Dr. J or Dr. S in DC. Or even Dr. H in New York. He's trying to say he's basically the only best Doctor and that if I don't keep seeing him and go to his church, even if I see someone like Dr. H or Dr. J, I still won't get better. Seriously? This what the guy said. All I really went to him for is a full lab markup on my Vitamin levels, Thyroid, and Testosterone because he's an osteopath, regular doctors aren't so willing to test your vitamin levels. Yet he was trying to force all his ideology on me, both religion and his alternative treatment protocols.

This is what goes on, there's a lot of superstition with this disease, deep down you know it 1000Daises and many others, considering what you said in a recent post questioning the Kinesiology and Cold Laser treatment at Sunshine Clinic, the truth is there's no science backing up whether or not these alternative treatments actually kill a borrelia infection, let alone the persister cells, biofilms, and hard to kill coinfections like bartonella and babesia. And like you said, "practitioners are seriously over charging for their services, and it is greatly disappointing." Chances are their reviews are also embellished and even the remission tales... Why? Because they're making a lot of money from it... I'm sure even Dr. H and even Stephen Buhner embellishes how many actually get healed from there treatments as well because they're trying to sell books.

https://www.healingwell.com/community/default.aspx?f=30&m=4011629

1000Daisies said...
I have gone to alternative medical practitioners who have helped many others. But yet, they failed to help my kids in any meaningful manner. I often wonder how they helped so many others but yet not us.

The important thing is whether they help you or not! Honestly, $1500 isn't that much compared to many of the other treatments that we've personally tried (or not tried). If it works, it's well worth every cent. If it doesn't, it was a very expensive experimental failure. And you really don't know until you do it for yourself.
(BUT I do totally agree - some practitioners are seriously over charging for their "services", and it is greatly disappointing.)

You know I wish I had money to go out of state to see the top Lyme Literate Doctors, but I don't. So just like you, I'm either stuck with buying antibiotics overseas, which I've been doing for the last 4 years or treating herbally, which I'm now doing.

And really, I never said cures don't happen, I do think it happens, but I think it most likely happens under the treatment of the top lyme literate physicians. The disease has become a lot more resilient due to the 3 Bs: Borrelia, Babesia, and Bartonella. The chance of remission has become rarer due to ticks contracting more pathogens in modern day and unless you're treating all three infections, it's going to take a very long time to reach remission, for instance Amy Tan's case because she fully went down the herbal route, it took her about 20 years to fully heal.

Again, there's other veteran members like TF that give their honest opinion on forums like LymeNet.org, it's not just me saying this. And what ya know, TF has been chastised on LymeNet.org for giving his opinion and was told to tone it down. Look curing Chronic Lyme is a tough task.

TF said...


Lyme is VERY difficult to cure for an average lyme doctor. You have to get to someone good. People have told me that in their lyme support group they know no one who has been cured.

Everyone can believe what they want 1000Daises, I'm not pressuring anyone into believing what I've said, it's just my opinion, maybe I am wrong and I'll admit that at times. Again, sadly you think I'm alienating myself, what I think it really is, I'm saying scary things that you don't want to hear about a lot of lyme patients embellishing their remission tales like Yolanda Hadid and Charlie Sheen did. If the celebrities are doing it, guess what, the average person is doing it too.

Yet people are paying thousands of dollars out of their pocket to get these very questionable treatments. I bring awareness to these topics and people get mad at me for it, saying I'm alienating myself. The truth is, the doctors who are embellishing the treatment and charging astronomical prices are the one's alienating themselves from the lyme patients, not me. All I'm doing is questioning the treatment and remission claims, which I have a right to do so...

Girlie said...

Healingwell lyme forum has been around for at least 10 years - not sure how long other forums have existed.

Girlie I've just made that remark suggesting it to Astronomer because I think he'll find different view points from "veteran" members on a forum like LymeNet.org because that forum has been around since 1993. Don't take offense to it, HealingWell.com is a great forum, but I think it's safe to say there's a lot of new lyme patients on Healing Well. There's a lot of lyme patients on LymeNet.org that have been dealing with the disease for all of their life 10-15-20 years plus. Sadly, the LymeNet.org forum isn't as active as it was when I first contracted lyme 10 years ago... But I think you can still learn a lot from veteran lyme patients and not make the mistakes they've made in the past by using the search box, hint hint.... Especially those that have tried many of the alternative therapies and they didn't work.

Just a thought, considering this guys name being Astronomer, he might like hearing what I have to say, me taking the more scientific side and not the alternative therapy/religious side route. I'll admit, I'm agnostic, but I've grown up in catholic school from grade school on my way up to college,. so I've heard and seen a lot. I still have open mind in God, even believe in things such as ghosts, after life and the paranormal, but I tend to lean towards looking at thing scientifically, I just can't ignore how things like slavery were once justified under religion, along with numerous wars, and many other superstitions that go along with religion. I don't like hearing religious Doctors that say, you have to have faith and spirituality in order to heal from a chronic disease. These superstitions have gone on long enough in this country, there's many of us sick and tired of it. Considering half the country doesn't believe in climate change because of their conservative/religious beliefs, yet it's the 97% of the scientific consensus. One of the major elements that helping the spread of lyme and ticks due to milder winters.

We all need to be respectful to each other beliefs 1000Daisies, just because a person has a different ideology doesn't mean I'm alienating myself. I think if you met me in person, you'd be surprised how open minded I am to the things you believe in, I just don't like it when religious people use religion to justify their ideology.

Post Edited (Charlie55) : 7/18/2019 3:35:37 PM (GMT-6)

Astronomer said...
I like hearing everybody's story and appreciate every post I have seen. I certainly don't want anyone arguing on my account. I am fully aware that not everything you read on the internet (or even the Healing Well forum) is accurate so don't get too upset if you see something you disagree with but please always disagree with civility. Thank you everybody for your contributions.

There's a reason why they call them Lyme Wars Astronomer. It's not just the IDSA/CDC and ILADS that is constantly debating about whether or not chronic lyme is autoimmune or a chronic infection. Believe me, there's people that will go to the ends of the earth about their treatment protocols that claim to cure chronic lyme.

Dr. Z that said those things, he never used to be like that, he even admitted to me he's sort of a born again Christian, but you need to be aware Astronomer what goes on. I wish you best of luck...

If you read about the story of Greg Louganis, you'll hear the story where he got taken for a lot of money because he was told he had to rid his entire home of mold to put his AIDs into remission.

I suspect mold can be an issue, but highly doubtful moving to a new mold free home is going to cure your chronic lyme, just my beliefs, I know others have other have different thoughts on this subject.

Charlie55 said...

I know many people of religion also tend to go down the route of alternative therapy and while some you may think I'm against that, I'm not. I just think that many stories are embellished, I'm a big advocate of medicinal marijuana and even herbs. Just recently I went to see a osteopath in my home state, Dr. Z in Romeo Michigan, you know what he said, I'll have to start going to "his" church in order to fully heal myself or its never going to happen, lol. I can keep going to all different doctors, but I'll never heal myself until I take on faith! Now is this right? Considering I've only seen 3 LLMDs in Michigan and not the top lyme literate doctors out of state like Dr. J or Dr. S in DC. Or even Dr. H in New York. He's trying to say he's basically the only best Doctor and that if I don't keep seeing him and go to his church, even if I see someone like Dr. H or Dr. J, I still won't get better. Seriously? This what the guy said. All I really went to him for is a full lab markup on my Vitamin levels, Thyroid, and Testosterone because he's an osteopath, regular doctors aren't so willing to test your vitamin levels. Yet he was trying to force all his ideology on me, both religion and his alternative treatment protocols.

Post Edited (Charlie55) : 7/18/2019 4:21:11 PM (GMT-6)

Girlie said...
Charlie - isn’t Yolanda still in remission?

Maybe she finally is, I have no clue.

But if you read the link I posted, there's plenty of articles like this that have discussed over the years how she stated she's in remission, then she's out, then she's back in, then she's out again. Then she's pulled her breast implants out, then she's back in remission again.
https://themighty.com/2018/10/yolanda-hadid-remission-chronic-lyme-disease-relapse/

Some of the stuff she's stated over the years adds to the stereotype of lyme patients. And considering the materialistic show she was on, it's not someone I'd want representing this disease, I'd rather have someone like Shania Twain that seems to be more down to earth.

All I'm saying is, gotta question some of it.

I feel for both women, Yolanda and Shania were both dumped by their husbands, Shania even cheated on. I think just in general men have a lack of empathy for all people dealing with disease, I think it's time for change in our government and put a stop to things like this from happening, for instance the lack of empathy for 9/11 responders to get healthcare treatment.
https://www.youtube.com/watch?v=y2qmqsnvwuc

Whether it's the me too movement, the whole cancer/glyphosate or the climate change ordeal, lol, most of it's women fighting men. Sorry, I had to point out, but I don't know where we would be if it wasn't for some of these selfless women fighting the greedy crony capitalistic men in power, lol.

I'm 36 now, about to be 37, but I'm starting to realize some really screwed up things in life as I become older and wiser... Maybe more women in power are what we need to have more empathy for healthcare and the environment, a lot less care for other things such as war, considering it's now being brought to light lyme could be the repercussions of man's war. I fish and hunt, participate in some of the things dealing with the environment, I'm amazed in the lack of respect men have for the environment and climate change.

Whether it's Lorraine Johnson and her whole crew of mostly women on LymeDisease.org, Kris Newby, and that one female lawyer that fights for lyme patients, I'm start to see a trend and pattern with these issues. Those that are willing to stand up and fight the men in control of a greedy institution of the CDC.
All Women -> https://www.lymedisease.org/about-lymedisease-org/

I think men like me and Joe Rogan are very hard to come by, those that acknowledge these issues that a lot of men lack have a lot of respect for. "Let the market decide," lol Who you think says statements like that, sure isn't women...
https://youtu.be/gshvnz-ljfe?t=1413

Then to actually have the balls to outright and say it, I know a lot of people are bothered by the topics I bring up on this board, they make you feel uncomfortable... We have a lot of problems at hand in the world and how are we going to fix them? I tell you this much, constantly keeping the country centered around immigration isn't, but who do you think loves it? Men of course, lol

Screwed up world we live in, I'll tell ya this much, just good to see things starting to change a little. Men who have gotten away with things all their life, not so much anymore. If you haven't seen the documentary before, be sure to give the movie "I am Fish Head" a watch. That talks about the sociapaths/psychopaths that are always reaching the top powers in government and corporations because they always willing to screw over others to get to the top, most of them you guessed it, are men, lol. Big wake up call for those that are getting outed in recent days...

How much empathy you think Gary Wormser, Eugene Shapiro, and Allen Steere have for people that have died from chronic lyme. You ever think how they can still live with themselves? I'll tell you this much, all three of them have to be desensitized and some sort of psychopaths of some sort in order to keep perpetuating these lies. They are most definitely narcissist/bigots, because the acknowledge their side of science and not others science like ILADs, Dr. MacDonald and Dr. Sapi.

And what ya know, the people who exposed these doctors in the video Lyme Cryme were women. lol Good video, give it a watch.
https://youtu.be/f8du1z6r-ms

Interesting article, science is still trying to find out why...

https://www.livescience.com/61987-empathy-women-men.html

Somebody said...
The researchers found that, although women scored, on average, 10 points higher in the "Emotional Quotient" (EQ) test than men, there doesn’t appear to be a genetic basis for those differences, said lead study author Varun Warrier, a doctoral student in neuroscience at the University of Cambridge in England.

"Genetically, [men and women] seem identical, but there is a difference in the empathy score, which is quite significant," Warrier told Live Science. "The [highest possible] score in the EQ test is 80. We saw that men score, on average, 40, and women score, on average, 50."

Post Edited (Charlie55) : 7/19/2019 3:30:15 AM (GMT-6)

Deejavu said...

Astronomer said...
I've heard that if you diagnose Lyme quickly and get the antibiotics that you should be fine. Even though you're fine you can still get it again with another future tick. Are you really getting it again or does the second tick just reactivate the dormant Lyme? Does it ever really leave you once you get it?

So to answer your question yes, people have lyme bacteria but they do not always get lyme disease (there are reasons for this which I can go into more details at a later time)

Denise

Oh! So a positive test means that I have the bacteria but not the disease? If so, how do I know if I have the disease?

Astronomer-

I see your somewhat new here. And unbeknownst to you, your initial question could be called a loaded question" in the lyme community. (ha ha)

Yes, the lyme bacteria can remain, with or without the "lyme Disease" symptoms. There really is no way of proving if all the bacteria is gone or not, as you cant test every body organ, nook and cranny.

Remember- "Lyme disease" is the name given to a set of many possible symptoms acquired from the "lyme" spirochete bacteria technically called Borrelia burgdorferi. The disease or illness happens when your immune system has a negative response or fails to keep the bacteria from getting out of control.

The logging / paper mill industry of the upper midwest has long noticed some employees with positive lyme bacteria who do NOT exhibit lyme disease symptoms. I know of one individual like this. It is weird and probably rare. Most Borrelia burgdorferi in blood would create symptoms of Lyme eventually.

Its thought that long term Borrelia burgdorferi evades the blood (where immune cells thrive) and settles in the soft tissue and ceribral fluid where white blood cells (your immune system) is almost non-existant present. And lyme does not need oxygen to live, no need for blood. Blood is simply a pathway for it. In that case any form of blood testing cannot confirm much and we go by symptom resolution. This is why many long term lymies can continue to test neg with their blood and look at other markers as well as symptoms. Then there are the possible "persister cells" possibly hiding out in organs and maybe soft tissue too. There is not a whole lot of info on this, just a little here and a little there with test results from varying researcher.

Keep in mind- the MANY forms of herpes viruses are said to be forever. However, the symptoms and individual illnesses from that have a variety of "live time" for lack of better works. Chicken pox is somewhat forever, the itchy bumps that usually kids get are not forever but may resurface ads shingles later in life from stress.

That said, weather you have Lyme or not, is generally defined by symptoms or lack of. Anyone can goggle lyme symptoms, they also overlap with many other possibilities. True Lyme will generally have many of the symptoms. An important point is the first "bag" of symptoms, as they come on sudden, strong, and many, then vary for years after if its chronic. Some years better or worse that others.

Personally, I might still have (well, probably do) Borrelia burgdorferi harboring somewhere that is not detectable by the several varieties of tests. As long as my symptoms are gone or better, (they have been for over two years) thats what matters. I have not been taking ANY "maintenance" / anti-lyme Rx's for two years. Tried some supps this spring as a test to see if I'd herx, and I did not.

Remember this: Our bodies are LOADED with microbes trying to "live" off us. As far as Borrelia burgdorferi - Good luck killing it all, prob not going to happen. Some simply look at their blood, OK, but..........how about ceribral fluid.(?)..going to tap that too?

Symptom relief on its own, is what matters. And this does happen! Concentrate on this, not the negativity that sometimes surfaces on Lyme forums.

Post Edited (astroman) : 7/20/2019 12:11:20 PM (GMT-6)

The key is to strengthen your body symptoms so lyme or others don't give you symptoms.
Remember many-many people have been exposed to lyme and they never ever have symptoms.
Others get bit by a tick and one round of antibiotics take care of everything.

Kill the lyme but strengthen your body symptoms