This is paper is a must read:
“Aspects of Lyme disease advocacy are an important example of an antiscience movement …”
Thank you for posting Scott. It is so sad how desperate people are being taken advantage of, myself included (almost). Do we know how any of our Lyme people are doing btw? It would be great if they could update us.
Hi Rocker,
Last I heard MAVLisa was still having antibiotics infused into her via cannula by some “LLMD” one year on with no change in symptoms – in fact she’s worse. I think she’s well and truly so far gone into the world of Lyme, she’ll never come out again. DizzieLizzie threw it all in the bin and is now about 95% with a successful migraine treatment. Missmoss threw Lyme in the bin too. Not sure about anyone else.
Cheers
Thank you Scott. I passed this paper on to a friend of mine who is a doctor (and cares a lot about me) and he agreed totally. I still don’t understand how these LLMD’s who promise, or at least suggest, the world to you can still practice? And why more folks don’t sue after prolonged treatment without success? Any idea how this happens in the US? I spoke to a LLMD about a year or so ago and she seemed like she was selling me snake oil (she is not a big hitter, just a local doctor turned LLMD by taking a course to get her LLMD and also getting cured herself with lyme treatment). I even had my doctor friend call her and he agreed that I should not pursue this treatment despite my desperation at that time. Thanks for keeping us informed. Are all those members you mentioned keeping in touch with you? Thanks again for keeping us level headed!
scott when was the last time u heard from lisa? i thought she was doing better after being on antibiotics for a few months? has she checked in since?
Hi Scott…I haven’t been on this site for awhile as I too am fighting chronic Lyme disease… I feel I must correct several of your comments… First of all…the “article” you cite is a one-sided view of this horrible disease. In the Ubited States, Lyme continues to be an epidemic…just recently, the CDC corrected an estimate that 30,000 people deal with chronic Lyme disease. They amended it to say that 300,000 and possibly more suffer. The problem is that the “older group” that you cite are in the pockets with the insurance company. As the insurance companies don’t want to pay out any more than they need to…they make up arbitrary rules about the disease. Those that follow the party line get the exposure and their patients have their bills covered. Those that don’t…don’t! … The “good” llmd (Lyme literate MD) ( and with any medicine there are good and bad) put their medical licenses on the line and treat. As with any illness, there are charletons who jump on the bandwagon to treat Lyme by taking a weekend course. You must be careful who you see. My dr was an internist for 30 years and has been treating Lyme successfully for 15 years. That’s why I see him. Treatment is long and arduous, but people are getting better. If you wish, check out the FB page “Lyme Success stories”
People like myself with chronic Lyme are very sick. MAVlisa as you mentioned, is very ill and has just begun treatment via IV antibiotics…she has NOT been treating for a year as you stated. Yes, she is deep in the world of Lyme just as you are deep in the world of MAV… I can tell you that many people from this site have private messaged her with good wishes on her treatment., She is very ill, but treating with a wonderful, Lyme educated doctor.
The truly cruel thing is that you get worse before you get better. Treatment is arduous and very much like chemotherapy. Lisa is a true warrior and if you knew her like I do, you would cheer her on as I do. I am also on treatment and seeing some improvement, I was diagnosed with MAV and MS for many years by esteemed drs at The Mayo Clinic and Johns Hopkins.,. They did not get me better and it was my neurologist at Hopkins that suggested Lyme Disease…precious time (six years) was wasted as MAV and "“MS” were just symptoms of what I really have…Lyme…
I don’t want to revisit the Lyme controversy that embattled this site for months. This is a MAV site as it should be. I just needed to correct a few things in the comments. If you’d like…I can send scientific data from other doctors who are truly working to get people better…and not throwing out flawed info…
I wish you well… Dee
I tested positive for Lyme and several coinfections including Babesia last spring. I started treatment with herbal medicine end of November. I have been making some gains. I can now ride in the car as a passenger, walk more days than not without a walker, do things around my house. The every day level of my head pain is reduced, my brain fog is much better. I still have a long way to go. I still have sick days. I can function during my period and if I do get migraines they are not completely debilitating or sending me to the hospital. I did trail MANY migraine treatments fully, none of them ever worked enough. I have not treated all my infections yet but I will over time. Some people DO have Lyme and it needs to be treated. There are false negatives in the testing all the time. Where I live, in the northeast U.S. is a hot bed for ticks but they are everywhere and so then therefore are the infections. I don’t understand why Lyme keeps getting brought up but if someone like me comes along and wants to say the other side of the coin (and there is one and Scott knows my story) it’s frowned upon. If people do not have Lyme, don’t treat Lyme, treat your migraines and get better. But for those of us that DO legitimately have Lyme like myself, it’s the niggling digging comments that have come about on this board that bother me. It’s like being laughed at, sneered at, having my illness not taken seriously when it’s damaged my body. I see a very good neurologist in Boston and she did say that Lyme Disease can mimic many things including MAV/VM, Fibromyalgia and many other things. It can also give you migraines as a symptom of the disease if it’s in your brain and CNS. It’s not as easily treatable as some of you seem to think. The CDC updated their page to say the number of new Lyme Disease cases in the U.S. is 10 or more times the number they previously thought, 10 to 20 percent of people remain sick AFTER shorter term antibiotic treatment and further research is being done currently, and that the tests are not 100 percent accurate and many cases are undiagnosed. Look it up for yourself.
My two neuros, my PCP, my cardiologist, all are on board with my long-term Lyme treatment. They all just want me to get better. After viewing my history, my lab work, and the gains I have made, they know just like I do that I am on the right path. Just like if you have VM and you treat it and make gains, wonderful for you! It never happened for me because I’m full of infections. If I treat an underlying problem and I get well, be happy for me and wish me well like I do for you.
I agree with dee in that the treatment makes you sicker as you go along until you turn that corner to feel better. If you have Lyme for 20 years and were never treated and it goes into every part of your body, your organs, you are not going to get better in a month. That’s ludicrous. There are laws being passed here protecting long-term Lyme treatment. There is a law where I live that is in process of being passed where if you get tested for Lyme, they have to hand you a paper saying even if your test is negative, it may be a false negative and you may still have Lyme because the tests are not accurate. They would not be doing all these things blindly, if there was nothing behind it.
And I don’t think it’s right to discuss people who have been banned from this board behind their backs and without them being able to speak for themselves.
Another HUGE point with all this is none of the articles talk about coinfections. Many people infected with Lyme Disease are also infected with coinfections. If people are not tested or treated for them, of course they are not going to get better.
Just because it’s a study doesn’t make it good. The studies are flawed in that they don’t ever look at coinfections or even mention them. People are often more sick from the coinfections than from Lyme Disease itself. In my case, Babesia treatment is what is helping me improve. All the studies that are posted here are the same fatally-flawed studies by the same authors who cite their OWN studies. People have come on this board to point out why they are flawed multiple times before, same debate.
And Lisa’s doctor is not a “LLMD” he’s an infectious disease specialist just to clarify seeing as she can’t herself as she’s banned.
— Begin quote from “sarahd”
scott when was the last time u heard from lisa? i thought she was doing better after being on antibiotics for a few months? has she checked in since?
— End quote
Hi Sarah - I don’t speak to Lisa. The news was reported to me recently from another person which to my knowledge is accurate. I wouldn’t be at all surprised if she was in fact feeling worse. I had a recent appt with Dr Granot who explained to me the ravages of long term antibiotic use. It’s not pretty. And if you have a migraine brain you can just imagine the nightmare that could be.
I’m not going to argue about Lyme disease anymore. You guys who think there is inaccuracy in the science will never change that stance. That’s what this article is all about after all - the anti science of Lyme disease. That’s cool. I’m not the thought police. Yes, I do believe some people really do have Lyme disease but I do not believe and never will that a normal course of antibiotics (possibly two as the science outlines) won’t finish it off. What ails people beyond that is likely something totally unrelated, some sort of post-Lyme syndrome or, if a migraineur and dizzy – MAV.
Best to you guys and really hope you find the road to wellness. 
S
And that is the great debate, Post Lyme Syndrome or persistent active infection.
People that are still sick after short term antibiotics and still have the exact same symptoms and are told there is no other possible cause for those symptoms and test negative for everything else under the sun have every right to continue treatment for active infection. Many people DO recover after longer term treatment. It’s not like doctors are blindly doing this to harm people. Some doctors have YEARS of clinical experience of patients recovering, fully.
I have a family member that was also diagnosed with Lyme Disease and has been treating since last year. They are off all migraine medications and have been since about four months into treatment, so about 6 or 7 months now. No more “migraines” or vertigo, it was never VM or MAV. Improvements made, stop the antibiotics, backslide, go back on antibiotics, improvements come back, fevers go etc. To each their own. You can have any opinion you wish of course, but try to respect those that actually DO have it and have heart damage, eye damage, and other dangerous things from having it misdiagnosed so long.
I wish everyone well and healing to everyone.
It’d be good if we could see just one study in a peer reviewed journal that supported all these things that are thrown out there about chronic lyme, but they don’t exist. They are usually random online articles that or in obscure journals that are not peer reviewed. I saw a ‘paper’ recently that was supposed to prove sexual transmission of lyme and it was all over these chronic lyme Facebook groups but when I looked in to it is was an abstract in a non peer reviewed online journal written by a ‘llmd’ and the study had a sample size of 3! It’s laughable for any study to have such a small study population, but one showing sexual transmission!!! Please. There is absolutely no proof of any of these myths that become the truth on lyme forums. I think lyme is real and can be extremely serious but it causes definitive neurological symptoms that can be objectively proven by neurological tests, and it’s treatable. Look at the case reports of people with strong serological evidence of active infection, they all recover with a MAX of one month of treatment. I just can’t believe people base such huge financial and medical decisions on the basis of zero evidence…doesn’t anyone realise that there is a huge financial incentive for these lllmds to treat people!! That paper Scott posted is terrifying. One llmd used veterinary drugs! One killed someone by injecting bismuth.
People that truly have Lyme don’t all recover with a max of one month of treatment, Lizzie. Even some of the infectious disease docs where I live in the northeast will give PICC line antibiotics for a few months or longer for severe cases. I’d love to know what other illness could be causing the same symptoms for people after treatment versus before, including repeat positive tests (IgM), fevers, and other signs of persistent infection. Around here, it depends on who you see. Doctors are divided because there are so many cases here. My cardiologist, neurologist, PCP, they are all on board with treating longer than one month if active infection symptoms persist. And coinfections are hardly mentioned and I have three proven on blood work from a regular lab. I’m lucky, for a lot, the testing doesn’t show what they truly have. They are not as easy to treat as some think. I’m living it. I have been fully tested for everything else known to man that could be causing me to have elevated white cells, low red blood cells, chronic fevers, low CD57 (and yes, that is a real test) and many other things. Everything else was ruled out. Everyone agreed it is Lyme and Babesia and the other positive blood work I have and I am still sick, so no, it doesn’t always go away right away, especially if you have been sick over 20 years and it’s in every part of your body. And it’s already been discussed about whose studies those are and who makes up the board for the IDSA. You can believe what you want but while I’m sitting here with heart damage and full of infections, I will believe what I want. If there was nothing behind anything I’m saying, so many doctors here would not support treating longer term and diagnosing clinically. And I’m not talking about just LLMD’s, I’m talking about other doctors, including infectious disease. Even the CDC says Lyme is a clinical diagnosis and testing might not be accurate in later infection stages. There is also a huge financial incentive NOT to treat people long term. Some of the IDSA board members are part of pharmaceutical companies and vaccine companies, it’s public knowledge. I understand that some LLMDs are in it for money and are not good doctors, but some of them are. Some of them are even infectious disease specialists or internists with 30 or more years experience. People should always be careful who they see, what treatments they get etc. That’s common sense. Many states including the one I live in mandate that health insurance has to cover long term Lyme treatment and there is a bill in the works here that states if you get a negative Lyme test, they have to tell you it may be false negative and you may still have Lyme. It’s not like there is nothing behind what I’m saying.
I don’t disagree with much of what you’ve said there. But there is a hell of a lot of ridiculous stuff perpetuated by lyme forums and chronic lyme advocates. People randomly diagnose themselves with multiple co infections, take hundreds of supplements etc. I agree the proper treatment period is undefined but so far peer reviewed evidenced defo does not support months and months of treatment. It’s not properly understood but evidence would suggest shorter rather than longer treatment periods. I think personally that if you take antibiotics for 2 Months and there’s no change u gotta seriously doubt the diagnosis. A herx reaction is a well defined acute and short lived episode which has somehow now come to cover any worsening of symptoms in a chronic lyme patient. Evidence doesn’t support the persistence of igm antibodies as being suggestive of active infection. I am also very angry about the over sensitivity of igenex tests. They Mis lead people, their interpretation criteria is clearly too sensitive. There was an exposé on the bbc here in the uk and 2/3 randomly selected, totally healthy individuals tested positive via igenex! Lyme is a mess but all the catastrophising IMO is misplaced and potentially dangerous if someone pumps themself full of string antibiotics for Months/years. I know people who’ve ended up with kidney damage and heart issues and they still carry on! One lady had her gall bladder removed, convinced it was full of lyme bacteria, it wasn’t even inflamed! There’s some madness on the chronic lyme advocacy side for sure!
Ps. Wouldn’t years and years of antibiotic treatment boost pharma profits and be a positive thing for them??? Certainly more so than diagnoses of ME etc which have no medicinal treatments…I don’t get that?
They make more money from other meds versus antibiotics. I have many friends diagnosed with CFS/Fibro and they take antidepressants, meds like Lyrica, Cymbalta, Gabapentin for pain. People are prescribed heart meds, thyroid meds, you get the picture. More and more medications are usually added if they don’t get relief, and they are on those medications for life, not just a few months or a couple of years. This is just going to go on and on and if you look in other threads, it’s all the same information. You don’t need to believe it. Everyone is entitled to their opinions.
I don’t doubt my diagnosis, it’s right on blood work. If I was sick 10, 20 years or more, it’s not going to be completely cured in two months. And I had every test under the sun done to see if there was ANYTHING else causing my symptoms and there is not. I have severe neuro issues, positive D-Dimer blood work for inflammation (no arthritis or any cause of it), high white blood cells, problems with virtually every system in my body, heart valve damage and I could go on and on. There is no other cause of it according to EVERY doctor I have been to, and I have positive blood work to state Lyme, Babesia etc. including my PCP so that’s what I am treating. Does that mean I don’t have any other health issues on the side? No it does not. But if I’m sitting here with symptoms all over my body, fevers, swollen joints to the point they won’t bend, attacks of seizures and paralysis and all kinds of things all over my body, I sure am going to treat the infections causing it (and it’s not just Lyme, it’s the other infections that showed up in my blood work. Since I’ve started treating them, I am improving. I just came off a week break from treating and I went downhill after the week, went back on, improving somewhat again. I will do what I see fit instead of wasting my life sitting here being sick. I tried every migraine treatment that was offered to me and nothing ever worked and when I saw my two neurologists AFTER the Lyme diagnosis, they told me that was why thy were not working, because I have Lyme Disease and I do have documented coinfections namely Babesia that causes neurological symptoms as well as a lot of the other symptoms I have like night sweats, fevers etc.
If there was a good treatment that worked for everyone with late state undiagnosed neurological Lyme Disease, there would be no controversy and people would not still be sick. More research and studies need to be done. And not only by biased people. The period of treatment is undefined because one place I went said 4 weeks, another months, another years. They are all different.
I as well as my family member do have improvements while treating the infections, come off it and slide right back down, go back on, improve again. I’m talking about measurable improvements like a decrease in white cells on blood work, the swelling in joints going down that you can see by eye, decrease in fever that can be measured with a thermometer, decrease in seizure activity as well as decrease in other symptoms that you can’t measure but can feel like night sweats and vomiting. I am a VERY thorough logical educated person and I would never blindly go into anything like this with my eyes closed. I will continue to do what I see fit.
Long term antibiotics are also used to treat other diseases, not just Lyme, Tuberculosis being one. They give out unending supplies of the same antibiotic used to treat Lyme Disease for people with acne. Why would they give it out for years for acne and have an issue giving it out for months for Lyme Disease? It’s the SAME medications (Tetracycline, Doxycycline, Minocycline).
Someone who I think has some good research if you are open to reading it is Alan MacDonald. I read things on both sides of the coin all the time. Look him up if you are interested, if not, that’s up to you of course.
And as an aside, there are also no tests or “peer reviewed studies” to prove MAV/VM. It’s a diagnosis of exclusion as you well know. If you treat that and it does not improve, my opinion is to move on and look for the cause of your symptoms. If you treat and do improve, that’s wonderful, that’s my whole point, for everyone to get well.
— Begin quote from ____
Long term antibiotics are also used to treat other diseases, not just Lyme
— End quote
This is very poor logical reasoning. That because it is used for one thing that we can safely assume it is ok for Lyme disease. Four randomised controlled trials show that long term ABX use makes no difference in outcomes.
That was in response to Lizzie’s comments about the dangers associated with long term antibiotic use.
And also to show that they do use them long term for other health conditions.
It doesn’t matter what the heath condition they are used for, the effects on the body are the same. So are the effects on drug resistant bacteria.
Hi Shelly,
I was wondering if any “MAV-like” symptoms improved on the antibiotics? And does this mean you will have to be on and off antibiotics for life if every time you stop you get worse?
Thanks!
Yes, I had an improvement in some of my “MAV” symptoms. I regained the balance on my left side which went from almost nothing where I needed to use a walker more times than not. Instead of when I stood up falling over to the left or having to lean to my right to avoid falling to the floor on the left side, I had that steady feeling of being able to use both feet and not fall. I went to places like Target and grocery stores and walked without a walker or having to hold onto a shopping cart, just walking by myself. I can now tolerate an hour or more to do a whole shopping. Before, I could only do five or ten minutes and would end up on the floor. Literally. My brain would short out from all the stimulus and I would either pass out or get so dizzy and confused I would have to sit on the floor and then be walked out of the store. My severe motion intolerance went from a 10 to maybe a 5. I still can’t drive, I don’t fully trust myself, but I’m hoping to. I haven’t driven any distances in 10 years or more so I want to be sure ALL the vertigo and dizziness is gone before I did that. I can do rides in the car now, even if it’s an hour, versus vomiting with a five minute car ride and having to turn around and go back home. Instead of being debilitated every day, I have a sprinkling of bad days a month where I feel pretty bad. The tinnitus I also had that was so bad I had to sleep with a TV on is almost gone also. And I’ve had that for about 7 years. I’m not saying I am fully well. I am not. But I did have very measurable improvements where before I never did, I only ever got progressively worse.
The other symptoms that improved were I had burning pains in my hands and feet and now they are totally gone. I had daily fevers that have been gone for about three months now I think? My night sweats went from horribly drenching where I had to change about 3 times a night to some nights none at all, and some milder here and there. My brain fog has improved measurably. Not every day, I have some bad days, but a lot of days versus none before.
I had a set back and needed to take a break treating and I’m having trouble right now because I’m going back on medicines and they make me sick at first but then it eases up and I do better with them. I have no doubt I will go back to the point I was before, I just need time.
And to be clear, I do not take antibiotics, I take herbal antibiotics and herbal malaria treatments (true herbs that are potent, not homeopathy). I chose to take this route first as I think it’s healthier on the body because you can boost your immune system while you heal instead of destroying it, but I know that if this does not work well enough, I will take antibiotics, yes. I think in some cases they are needed if herbal medicines do not work. They are helping me now though so I will continue. Would I ever take antibiotics for life? No way! I might consider going back on herbal medicines if I felt bad down the road at any point, yes, and if they helped. I haven’t had any bad effects on them since last November when I started them. I’ve had regular lab work to monitor things.
— Begin quote from “shelly3257”
I do not take antibiotics, I take herbal antibiotics and herbal malaria treatments (true herbs that are potent, not homeopathy). I chose to take this route first as I think it’s healthier on the body because you can boost your immune system while you heal instead of destroying it
— End quote
How do you explain this – that you have a long term bacterial infection raging around your system that pharmaceutical grade antibiotics cannot touch but that some non-specific unproven Chinese herbal remedies can? How do you know you have boosted your immune system?
S