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Antiscience and ethical concerns - Lyme disease 2011


#12

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.


#13

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!


#14

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?


#15

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.


#16

— 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.


#17

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.


#18

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!


#19

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. :slight_smile:

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.


#20

— 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


#21

I do believe herbs are effective for certain health conditions. And I also believe certain herbs boost the immune system, where traditional antibiotics eradicate the immune system. I see an integrative practitioner. That’s my choice and my beliefs. I never said pharmaceutical antibiotics could not touch the infections. A lot of people use and need them. And I might down the road if what I am doing is not enough. They are herbs that a lot of integrative or naturopathic doctors use successfully. I also have a family member with Lyme disease and her doctor is an internist with over 30 years experience and he uses the same herbs in combination with antibiotics.

I was told my immune function improved based on blood work. I go next appointment in May to discuss it further and get copies for myself.


#22

Hi Shelly,
Thank you for the clarification. This might sound like a dumb question, but how do you show on blood work that your immune function is improved? I would like to ask my doc to test my immune system more if there was something he missed. Are there specific immune system tests? I know about having antibodies, etc. Does that mean you now have antibodies or that you no longer show an increased WBC count (which I know I have had when I had colds, etc.). My doc is not a naturopath so I wonder if naturopaths know of something else.
Thanks!


#23

I’ll find out when I go next month to my appointment. I didn’t see them in person last time, I had to call on the phone for test results.

I’ve been very happy seeing this doctor. Do you like your naturopath and have any of the treatments for different things worked for you? I’m new to this as of the end of last year, but I have found they give a lot more time and I like the idea of trying natural things first, but my doctor is integrative so they do both, which I also like. Before if I saw my PCP and I either couldn’t take a medication or it didn’t work, I wasn’t given any other options, so I like having other options to try. I do find they seem to know more about lab tests for certain things. The health insurance I used to have covered naturopathic doctors and I’m waiting to see if mine is going to follow suit. More and more insurances are covering it now which I think is great.

And yes, my WBC is back to normal after being very very elevated for years.


#24

— Begin quote from “shelly3257”

I do believe herbs are effective for certain health conditions. And I also believe certain herbs boost the immune system, where traditional antibiotics eradicate the immune system. I see an integrative practitioner. That’s my choice and my beliefs.

— End quote

It really worries me when people speak about ‘beliefs’ in relation to science. That’s the language of faith, ie. in things which can’t possibly be proved, like the existence of God or Xenu.

Science doesn’t require any belief at all, there’s evidence or there isn’t. In asking you to explain how the herbs can fight an infection Scott was asking for evidence. You simply stating that you believe in them and suggesting that herbs ‘boost’ the immune system (what does that mean?) and that antibiotics ‘eradicate’ the immune system (also puzzling) without anything to substantiate this other than your ‘belief’ doesn’t really tell us anything.


#25

I’m not here for a debate or to be interrogated, I was trying to be polite and answer what I could. No matter what I say, it’s always questioned to death, from my diagnosis to the way I choose to treat. I try to answer the best I can and it gets picked apart, while other valid points are ignored.

There are plenty of people who go to naturopathic doctors over MD’s because that is their preference. Is preference a better word than belief? I’m not here to nitpick words. Naturopathic doctors go to medical school just like MD’s do. There are books on herbal medicine, papers on them, some are listed on drugs.com database as to their efficacy for certain medical conditions. I know in clinical practice, there are cases where they know what works and what does not and I’m sure they learn their herbs in medical school, as well as pharmaceutical medicines as my doctor does since he prescribes both. In some cases they can measure what is working with blood work, such as me with my high cortisol and things like that. If you would like lists of medical studies or evidence on what herbs do what, I’m sure you know how to Google what you are looking for.

My choice is to try what I am doing and when I notice measurable results, not just subjective ones, I know what I’m doing is working. I ask others what has worked for them, just like we do on this forum and on other health groups like Facebook. None of it is to be taken over the word of a qualified doctor IMO, but it doesn’t hurt to ask opinions. It also does not hurt to ask doctors what has worked in clinical practice if they have years and years of experience treating patients. At the end of the day, it’s up to me if I want to try something and if it doesn’t work, I’m not an idiot, I would move on. If it’s working, I will stick with it.

Naturopathic medicine is also used for migraine management as I’m sure you know. If I went to my ND for migraines, he would say B2, Magnesium, Feverfew, Butterbur… Because I’ve asked him.

Every doctor I have EVER gone to said antibiotics have a negative effect on the immune system. They fight bacteria at that expense. PCP, GI doctor, neurologists, cardiologist, every Lyme specialist I saw before ending up at the one I am at. I always question everything before I decide what to do.

How about one person saying hey, I’m glad you found out you had these infections so they can be treated. Or that’s great, I’m happy you are finally having some improvements?


#26

As an aside for the people wanting positive updates on people that were diagnosed with MAV and found out they have Lyme and treated for it, I have a family member also with Lyme (and Bartonella) that started off last summer bedridden and horribly sick, lost a lot of weight, could not eat, vomiting, “migraines” and vertigo, fainting, heart symptoms, swollen joints, fevers, sweats, severe fatigue, muscle weakness, to the point she had to walk with assistance, vision problems, and a lot more. She’s now out rollerblading today, gained back the 15 pounds she lost, has not vomited in over a month, vision issues are gone, is eating regularly, is able to now do her school work and get good grades again (cognitive skills and thinking), and has been off migraine meds with no migraines or vertigo for months. That’s the upside of what long-term antibiotics can do for someone with Lyme that does not respond to short-term treatment. She has regular blood work to monitor her body and takes a lot of probiotics to protect her gut and she’s doing just fine recovering.


#27

— Begin quote from "shelly3257"

Naturopathic doctors go to medical school just like MD’s do.

— End quote

It sounds to me that you are suggesting that because a naturopath has to study that they are somehow on equal footing to medical physicians. This is not logical. My ex studied naturopathy in Sydney and I know first hand what it entails. It was nothing like the rigour or length of study time an MD must go through at university level – first an undergraduate degree (usually in science or medical science) for four years followed by a medical degree for another 4 years then followed by working under other physicians. To be a GP they undertake further courses as a specialty. It’s chalk and cheese.

— Begin quote from "shelly3257"

Naturopathic medicine is also used for migraine management as I’m sure you know. If I went to my ND for migraines, he would say B2, Magnesium, Feverfew, Butterbur… Because I’ve asked him.

— End quote

There is nothing interesting or novel about this coming from an ND. These things you list have evidence behind them albeit weak. Some neurologists suggest using these. It’s the rest of the stuff an ND might suggest that is without evidence. You need to read a book called “Trick or Treatment?” that reviews in detail what evidence exists for herbs, chiropractic, homeopathy, etc. Mostly none.

(NB from admin: these images link to products members have found helpful and at the same time help fund the site: As an Amazon Associate I earn from qualifying purchases. Thanks for your support!)

“Trick or Treatment”
More recommended books here

— Begin quote from "shelly3257"

Every doctor I have EVER gone to said antibiotics have a negative effect on the immune system. They fight bacteria at that expense.

— End quote

I’d like to see a mechanism for this and evidence for that statement. My organisation is running a national campaign about antibiotic resistance and smart use of this wonder drug. Never have I heard that a course of antibotics destroys the immune system.

S


#28

Scott, I never said they were on equal footing with MD’s. It’s apples and oranges. I have my preference. The end.

If I have just gotten infected, I’d take the antibiotics. I do believe caught early, Lyme is easily treatable with a course of antibiotics. I have been sick for YEARS. My choice is not to take antibiotics right now but if I do not get well doing what I’m doing, then I will. I have had measurable improvements (including a cortisol issue) by taking herbs. If I had not, I would not still be taking them. If I do need antibiotics, my doctor can prescribe them as well as the herbs. He’s integrative and uses both.

I had high cortisol on multiple tests. I took an herb to help with it. I retested and my cortisol is normal.

I’ve already mentioned my white blood cells have normalized and my fever is normal for the first time in over 3 or 4 years. I have had some improvements. Measurable ones, not subjective ones. Therefore, I will continue to do what I see fit.


#29

A good read here from Quackwatch on Lyme disease:

[size=120]Lyme Disease: Questionable Diagnosis and Treatment[/size]

http://www.quackwatch.com/01QuackeryRelatedTopics/lyme.html

Regression to the mean is something always overlooked by people using unproven remedies as evidence for efficacy.

— Begin quote from ____

[size=110]Much of the effects claimed by alternative medicine can often be explained simply as regression to the mean, and this plays a part in the anecdotal evidence used to support it. Many symptoms will come and go in an apparently random fashion if recorded in an objective way - headaches, for example, tend to disappear without the aid of any treatment over time. People seek treatment when their symptoms are particularly severe, like those on the cover of Sports Illustrated the symptoms are at their respective “top”. Regression to the mean, therefore, suggests that if symptoms are excessively severe this week, then next week they should be less severe simply by random fluctuations. If treatment is only sought when these symptoms are at their worst there will almost always be a coincidental recovery. This appears even if the treatment has no effectiveness whatsoever.[/size]

— End quote

http://rationalwiki.org/wiki/Regression_to_the_mean

S


#30

Great find Scott. I still don’t understand how in the USA these LLMD’s are allowed to practice? Or even why they would practice beyond the money aspect of it. Thoughts? Seems like there is a lot more harm than good that they are doing.


#31

I refuse to believe there is NO ONE that is helped by herbal medicine, and I know I use the Butterbur/Feverfew argument, but it’s true. There ARE people that get migraine relief from them. I’ve even had blood work normalize that was off for years while on herbal medicine. Symptoms that I’ve had for 11 years improve. They are not gone, but they are improved, and with how skeptical I am, I’m absolutely positive they are improved or I would never ever say they were. I’d be mad I wasted time and money on them and I’d be sure to let people know to steer clear. I don’t believe in homeopathy and watered down remedies, but true potent herbs, I do. And I’m sure I’m not the only one lol.

You can post all the articles you want, I go by what works for me. I spent all these years racking up 30 grand in medical bill debt trying Epley maneuvers, seeing an ENT for my supposed Meniere’s Disease, I almost had my ears destroyed with shots and brain surgery because they were positive I had Meniere’s Disease, paying for MRIs, every migraine medicine in the book multiple times, VNG testing twice, nothing EVER worked.

I have solid evidence on blood work more than once that I have Lyme Disease but more importantly and what is making me sicker are the other infections like the Babesia. It would be idiotic not to treat them, so that’s what I am doing. And I already stated if it does not work, I will try standard treatments for them, but I will not accept Post Lyme Treatment Syndrome when the CDC itself says they don’t know what it is or why some people get it and that it’s being looked into further. They also state Babesia is in the blood supply from donors, blood is not screened for it, and they don’t have any reliable tests to screen blood with it, so there’s probably an awful lot more people walking around with it than they ever realize. The Red Cross even states if you have “Chronic Lyme Disease” you cannot donate blood for the rest of your life and same if you’ve had any serious illnesses such as Babesia, but people could unknowingly have both and still donate and blood is not screened for it.

I know an awful lot of people that get sick once they stop treatment and then resume and feel better again. If it was not an active infection, how would that be? I’ve seen it with a family member twice. Until there is a test that shows the infection is one hundred percent eradicated and gone, and what is left is damage, I will keep treating it if it helps me. I’ve spent almost my whole adult life being sick from this and I want to feel better. Nothing I’ve done to this point has achieved that except for what I am doing now.

And about “LLMDs” I’m sure there are some out there that don’t know what they are doing and take advantage of people and misdiagnose. But so have traditional doctors by overdiagnosing people with things they don’t have like MAV and Meniere’s Disease. Some doctors are Lyme Literate and treat Lyme Disease longer term and they are infectious disease specialists or internists with many years of experience.

Couple of points from that article. “Lyme disease, when diagnosed early, is readily treatable with oral antibiotics.” Many people are not treated early, they are not diagnosed early, years and years go on like with me. It’s not so readily treatable at that point. I haven’t been specifically treated for Lyme Disease with antibiotics but three years ago I had pneumonia and was treated orally and on IV antibiotics for 6 weeks. The antibiotics should have covered Lyme Disease as well. It obviously did not.

Another point is that the article is about Lyme Disease and often people with Lyme have other tick borne illnesses that CAN be fatal that make them very sick and are worse than Lyme Disease. At this point, Lyme Disease is the least of my worries.

Lastly: “Many infectious agents can cause chronic infections or can be difficult to eradicate with standard antibiotic treatments. Unfortunately, it is often difficult to diagnose such infections and, in the case of Lyme disease, it is difficult to know what percent of cases persist in the form of chronic infections. Other possibilities for persistent symptoms include: autoimmune-like reactions in which the body attacks its own organs and tissues; physically damaged or scarred organs and tissues from an earlier infection; another tick-borne infection such as babesiosis or ehrlichiosis; and re-infection by B. burgdorferi [4].” Again, the study is about EARLY Lyme Disease. It’s another ball game when it’s late stage neurological Lyme Disease that’s been sitting there for 20 years.