Do you have Lyme forever?

million dollar question answered by my microscope is yes : its very much intercellular and encysted with even 1 yr pulsed iv abx . bvt has no active ketes in plasma after 3.5 yrs but i feel if i stop they will replicate... a local lyme id doc who taught klinghardt some said oh no hunny it's lifelong and if you dont treat it will likely turn to cx:... homeopaths believe in a evolution of pathogens : having the same genome sequence as its evolutionary predecessor. something like myco to cocci to ones with flagella to ketes to fungi and mold to mutated cells we call cancer . the ashes lyme leaves in its wake can still build a life and yes 90% of people have it already

Post Edited (bluelyme) : 7/15/2019 6:42:53 PM (GMT-6)

If you don't get another tick bite....then wouldn't it be a relapse from the first infection (tick bite) , not a re-infection.

Maybe we're getting tangled up with the words...and we mean the same thing...lol.


Bottom line....we're hooped.

Girlie said...


Majority of people who treat appropriately soon after tick bite are fine.

Wow Girlie, you know that for a fact, fine? Starting to sound like the New York Times article, the truth is, no one knows the true statistics, how many are coming down with chronic lyme and getting cured, how many are easily treating lyme in the acute stage.
https://lymediseaseassociation.org/blogs/presidents-blog/shame-on-the-new-york-times/
https://www.health.com/condition/lyme-disease/ny-times-lyme-disease-backlash

But just looking at the richest celebrities that have come down with lyme, most of them saying it's completely ruined their career or they "almost died" like Alec Baldwin. Just a hunch, but I think the Government is lieing about how bad the whole lyme epidemic really is. Even the John Hopkins study, supposedly 1 in 5 only come down with Chronic Lyme due to persister cells... Um yeah, not buying it!

If the true statistics were actually 1 in 5, that would mean that the majority of celebrities who contracted lyme would of said it's no big deal, but instead people like Shania Twain, Alec Balwdiwn, Amy Tan, Avril Lavigne, Yolanda Hadid, Ally Hilfiger have told their stories as if they were close to death, ruined their carrers/lives, many of them.

And sadly, I think there's many that claim to be in remission from lyme, but the truth is they're just on a antibiotic or herbal maintenance protocol. Many are sugar coating it just to make themselves feel better, some are just flat out lieing, I know most don't want to hear this, but just like Dr. H said, 90% are relapsing with chronic lyme. I think you need to know the truth Astronomer, so you realize how tough and long treatment can be. I know support is important, but some go out of their way to promote cures that dont work and remission tales when really they're actually still sick.

And just so you know, HealingWell.com is sort of a newer forum when it comes to lyme. If you're looking to see how long some patients have dealt with chronic lyme, head over to lymenet.org. There's veteran lyme patients who have been dealing with this disease for 10 years, 15 years... Even longer... Search button is very valuable over there.

I would say a lot of people do get better, get to that point where they're able to live a somewhat normal life, working part time, some even full time and being on a maintenance protocol. There's some that even do fully reach remission, but just like Dr. B said, chance of remission is slim if you don't use something like IV antibiotics or a very aggressive oral antibiotic protocol. Great article and video about Dr. B here https://www.healingwell.com/community/default.aspx?f=30&m=4095701

I've been dealing with this disease going on 10 years now, about 8 year of treatment. LymeNet.org was the most popular forum at the time when I first got diagnosed 8 years ago. I think in the past decade ago, as the search algorithm changes and new forums become popular, HealingWell.com has sort of become the most active forum now.

And I hate to say this too, but truth is the top lyme literate doctors that are able to truly put this disease in remission are a lot more scarce then what one's lead to believe. LymeNet.org and HealingWell.com are great forums, but after talking with a veteran forum member like TF that shares the exact same beliefs of me, there's many that aren't telling the real hardcore facts about the disease, because really, it's kind of scary. Some may end up dieing or living with lyme for life.
http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/135810

TF said...

The message is that every Tom, Dick, and Harry will say that they treat lyme disease. That is not what you want.

If you can find one of the few doctors who have cured people, then you are in with someone who has the expertise necessary to cure you. You are just starting out, so you should not be a difficult case.

So, I hope you understand that you must choose your doctor wisely. At least half of all lyme patients go out of state for their care and many fly. So, you often MUST travel to get to a doc who has cured people.

There are just a handful of them here on the east coast.

Some states have no lyme doctors at all, and many states have no lyme doctors who follow Burrascano. Only a few brave doctors follow him anymore due to the persecution that comes their way.

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.

Meanwhile, I have 5 personal friends who have been cured. They all went to the docs I recommended to them--ones who followed Burrascano and had a record of getting people well.

It takes about 10 years of treating lyme for a really smart doctor to be able to get people well (easy to difficult cases). At first, he may be able to get simple cases well--like people ill for less than a year.

TF even told me he was told to stop telling lyme patients on lymenet.org to go with the top lyme literate doctors and dont bother with the lower level LLMDs. Bottom line is, sometimes the truth hurts, and while keeping a positive set is important, sometimes fairy tales and lies about lyme cures can do more damage than good when lyme patients end up going bankrupt. History is there for a reason, learn from it, don't make the mistakes others still do to this day. I mean really for the most part it's not their fault, some end up going bankrupt within a short period of time because most Americans live pay check to pay check anyways, so they end up doing just herbs because it's the only thing they can afford or the only thing they have access too.

But hey, with new treatments and breakthrough happening like Dapsone, Disulfiram, Stevia etc... There is hope that treatment will be broken down to only a few years time and remission will be a lot easier to reach. But like Girlie will say, Dapsone is kind of old, it's been used by a top LLMD like Dr. J for quite some time now, going on 5+ years so, yet so many lower level LLMDs aren't using it. I just hope the same thing doesn't happen with Disulfiram, hopefully more LLMDs will be willing to use this drug due to less side effects it has.

There's a lot of factors that are prolonging the treatment of this disease, like Dr. B said, Doctors not using the adequate enough oral Doxy in early stages, not using IV antibiotics. He claims a lot of these coinfections would of probably been knocked out in the early stage if Doctors were treating the disease aggressively enough. Again, hope you watch his video, you can learn a lot just what this top Lyme Doctor has to say about this disease, rather than searching for answers from lyme patients that may have only been dealing with this disease for 5 years or so. The truth is a lot of information gets twisted on the lyme forums... Listen to what a top Lyme Doctor has to say, a man who has been studying this disease for decades.
https://vimeo.com/306846706

And really, chronic lyme isn't the same disease it was 5, 10, 15 to 20 years ago. The bacteria is evolving, becoming harder to kill and ticks are contracting more pathogens, so when you get bit, you not only have borrelia, but many other coinfections like viruses, parasites like babesia, and other bacteria like bartonella. The disease has just become a lot more harder to treat now, than it was years ago.

Post Edited (Charlie55) : 7/16/2019 3:52:47 AM (GMT-6)

Everything is confusing, at least to me.

It took, a least, 11 years or more to get a diagnosis of Lyme. Yet after 2 years of feeling bad, I had a number of years where I felt better and was exercising, working, coaching, etc... That was better without treatment, since I didn't even know Lyme was there. Then after a period of bad stress, developed Sweets Syndrome, which was no picnic.

about a year and a half later, I finally get a diagnosis of Lyme because I had felt so bad. Sweets Syndrome had gone away but started feeling worse more in a "Lyme" way. Took about 2 years of different treatments to get back to 85% better.

Went 18 months feeling back to 85%. That was primarily from Bicillin shots and Argentyn 23. Enjoyed life and DID NOT TREAT at all during that period. Coached college track/cross country, traveled, had odd hours, worked full time and more. Ate most whatever I wanted. Heart surgery in June, 2016 put an end to that and have not been able to anywhere past 40% at best since,

I've now had Lyme at least 17 (or more) years with years of feeling better mixed in. But never 100%. Last three years have been the biggest struggle. My experience with Lyme is a mixed bag and does not fit a lot of theories. And with kidneys now in play, treating is a challenge.

Point is, are there truly any real patterns to this? I do believe stress and immune system play a huge role in it all. We read we can't get much better, then you read you can, then read it depends on how long you had it before being treated. Then the mind starts racing with thoughts.

Starting to wonder after this journey so far if anyone really knows a darn thing about what to do. That is not said to discourage, but point out I've been all over the map with this. It doesn't seem to fit a lot of what is written about Lyme, yet I've tested positive on several occasions, even through Labcorp. And that is not doubting anyone on this site. Just observations from my own experiences. Half of what I read scares hell out of me and the other half encourages.

Girlie said...

im talking about catching it right away - you get tick bite - take appropriate abx for enough time (not one 100 mg doxy pill)

Yes, so was Shapiro in the New York Times article...

Girlie said...

Majority of people who treat appropriately soon after tick bite are fine.

- high percentage - it doesn’t go chronic.

I'm just questioning how assured you are by saying "majority" and "high percentage," when honestly, no one knows for sure, considering each state, city, and location is different around the country. There's doctors still saying lyme doesn't exist in Michigan, my home state. How would one get proper diagnosis, quick treatment in Michigan when Doctors still aren't educated about Lyme properly and the main test they use, ELISA, isn't even accurate?

I can tell you this from experience, there's Doctors that still go by the old methodology that a red ring has to show or your ELISA test has to come back positive in order to receive antibiotics Girlie. How does majority of Michigan lyme patients get treatment when ELISA only test for one strain and the chances of your test coming back is positive is pretty rare considering there's like 50+ strains of borrelia?

Believe me, read this new article, this is still going on in many states like Michigan.
https://www.bridgemi.com/michigan-health-watch/woman-tick-and-fight-michigan-over-lyme-disease

The point is, like running wild is hinting to, everyone has a different experience with lyme and doctors in their own state.

I think in lyme endemic areas, like Lyme conneticut, yes, because people contract lyme so much, that could be the case that the majority and high percentage get treatment, like what Astroman said.

I think many are still coming to conclusions based on their own experiences in their own state, not taking into consideration what it's like in other regions of the country or countries. DO NOT UNDERESTIMATE THIS DISEASE LIKE THE CDC AND IDSA ARE DOING. Some of you seem so sure of what's happening with this Disease, I wouldn't take so much assurance.

Ya know there's states that get full insurance coverage for longterm treatment of lyme, my state is not one of those states.

Post Edited (Charlie55) : 7/16/2019 2:52:33 PM (GMT-6)

Charlie said;
“I can tell you this from experience, there's Doctors that still go by the old methodology that a red ring has to show or your ELISA test has to come back positive in order to receive antibiotics Girlie. How does majority of Michigan lyme patients get treatment when ELISA only test for one strain and the chances of your test coming back is positive is pretty rare considering there's like 50+ strains of borrelia.”

Yes - that’s a problem. But I wasn’t saying that everyone who had a tick bite was getting abx from their Dr.

I know my Dr now will offer abx for a big bite that looks suspicious - if the patient wants them.
I’m pleased that she has learned from my suffering.. and it has affected some peoples’ lives in a good way.
I believe she offers 2 or 3 weeks worth - which is a little less than I’d like.
But she also knows of a LLND she can recommend patients to see before they have finished the abx to get further treatment.

She called me several weeks ago and asked if she could give my phone number to one of her patients who has lyme, so I can help her.

“I'm just questioning how assured you are by saying "majority" and "high percentage,"

I’m going on people I personally know plus what two lyme docs have told me

Girlie said...


I’m not debating whether or not people are getting the abx from their Dr after a tick bite..and are getting enough to treat an accuse infection ....that’s another issue.

I'll admit, I was kind of getting side tracked, but I was trying to answer Astronomers question about chronic lyme and what you said as well, and mixed the two together because it was very late last night and I wasn't clear headed. To be honest with you, I still very much question how easily lyme is treated in the acute stage knowing how many coinfections one contracts from a tick bite these days. But the truth is, a lot of lyme patients can't even get treatment in the acute stage with antibiotics in Michigan, it's a big problem in my home state because Doctors don't acknowledge lyme, but I think it's still very relevant.

But again, I'm not so sure people are getting easily treated with 2-3 weeks of doxy for all the borrelia and coinfections they're contracting in modern day. I think the bacteria has become more resistant and a lot more ticks are carrying more coinfection these days. I just question these statements "majority" and "high percentage." And considering how lyme patients responded to the New York Times article, I think many are starting to question how easy even the acute stage is treated in modern day too.

If Dr. J and Dr. H say a lot of lyme patients are contracting the three Bs, Girlie you know this, how does one treat babesia with just doxy, when doxy doesn't even kill babesia? Not to mention the number of viruses you contract like Parvo and EBV which can hold the immune system back for a few months and doxy doesn't address either. And really, knowing how each state, city, and regions is diverse with different pathogens and ticks.

And I know many on this forum have doubts that a vaccine would even work considering the amount of coinfections a tick carries these days. The Disease has just changed so much over the years... I hear more and more stories of lyme patients relapsing these days even after 2-3 weeks of doxy.

But I think if lyme patients were just contracting just borrelia like they were 15-20 years ago, doxy 2-3 would be adequate enough, and "majority" and "high percentage" of lyme patients would be getting cured.

Post Edited (Charlie55) : 7/16/2019 3:53:50 PM (GMT-6)

running wild said...
What is it ever going to take to get this disgraceful situation corrected? It happened fairly quickly for AIDS because so much attention and political pressure was applied. Good to see that. How do we get there to help people like Astronomer who want to "nip it in the bud" and come up with solutions for those chronic?

In large part, that where the "Bitten" movement comes in. If enough people wake up to the dark origins of the disease and the ensuing coverup, the political tide will turn, and with it insurance coverage and research dollars will be loosed. AIDS had the advantage of favorable political winds, at least after the first few years. We have been the antithesis of that. But it seems we are getting more, and more knowledgeable, press of late (the NYT notwithstanding).

I am not in favour of the NY Times article.

I agree with Pat Smith’s statement:


“The Times article indicates a month long course of antibiotics is effective regardless of stage. There are two sets of guidelines out there that don’t agree on Lyme treatment. The IDSA guidelines, which embodies a few weeks of antibiotics and you are cured, or perhaps you get sent to a psychiatrist or told to go home and live with it. The ILADS guidelines, followed by the community physicians out in the trenches risking their licenses to treat patients—treatment which allows for clinical judgement. “

Astronomer said...
Wow! What a fantastic bunch of responses. I soaked up every one. Despite how confusing it all is, this forum brings me comfort. My symptoms started on May 29 and I was symptom free before I started 3 weeks of 100mg of Doxycycline. I have 3 days left of it. Since there appears to be no LLMD doctor in my area (Erie Pa) what should I do to convince my doctor that I'm not comfortable getting off of them so soon? I'm still symptom free and can't very well say "I heard on the internet that I need more." If I go to another doctor He or she might agree with the first one.
It's nice to see another astronomer on the forum!

You said you were symptom free prior to starting doxy -
Did you have bullseye rash?

My concern is the doxy you’re taking is half dose.
There are some llmd’s in or near Erie. They may not be the best but they may help if you need some abx at some point.

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.