This is from Canada, so we might see a change in their guidelines soon!
This is probably reason why orals work very poorly. IVs are better because of penetration, but it's still a matter of getting the 3-4 antibiotics intravenously to combat the multiple forms of borrelia. Plus getting past the biofilms!
I feel it's kind of a lie when LLMDs make promises they will get you better with oral antibiotics, they really are a poor management of this disease.
Also reason why most of you have such failure using any of the natural biofilm busters Dr. Sapi suggests...
quote:The tiny, spiral-shaped bacterium called Borreliaburgdorferi can quickly grapple along the inner surfaces of blood vessels to get to vulnerable tissues or to hiding places where it can hole up beyond the reach of drugs.
B. burgdorferi uses a special adhesive protein on its surface to grab like a hook onto the endothelial cells that line blood vessels, attaching and detaching rapidly as it migrates to its destination, the Toronto microbiologists explain in a new study published Thursday in Cell Reports.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
There are chemo drugs used for cancer that, in studies, have been shown to kill spirochetes and destroy biofilms.
Problem is- we can't drown someone in chemo drugs to help them get better. We'd kill them in the process.
Same with IV antibiotics. You can only dump so much into the body at one time before it dies.
I've watched some folks using 3 IV and 2 orals at the same time on a daily basis for a long time- their bodies for some reason handled it fairly well. As a result, they did well.
Then they relapsed.
I've seen people who could only take 1/2 of an antibiotic pill daily- NO IV'S at all- and they too did well.
Then they relapsed.
Point is, "the more the better" isn't the case here. Blaming a LLMD or Dr. Sapi for trying to put pieces together in the lab or in a clinical setting isn't productive or fair.
And just because we hate where we are and want more than anything to get better, and we want to be better sooner and without the costs, and we read what they are doing IN THE LAB ONLY and think it is ok to do in humans when it really isn't, that doesn't mean we should kick those who are doing the hard work for their current efforts.
Unlike most, they are at least trying and are moving forward as fast as the circumstances allow. (It will never be fast enough for us because we are sick and waiting.)
Blame, in my opinion, should rest solely with the IDSA/CDC and their associates who have wasted 40 years doing nothing for us and harming us more than the diseases themselves, while sucking up all the research funding.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
AND... Canada won't have guidelines that have the magic cure any sooner than we will. The CDC/IDSA have far reaching capabilities and have destroyed that hope for all of us.
Research = progress. The more the better.
Posts: 109 | From The Netherlands | Registered: May 2014
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- The authors fail to recognize the spirochetes' ability to literally spring anywhere in the body. They do not need the "highway" system of the blood vessels though it is interesting what they speak of in that regard.
Still, it seems that they never studied at all the many articles / presentations/ books of ILADS related authors who have written in much more detail about how lyme can move about, morph into other shapes and flip immune function in ways no one could have imagined.
So much more to this. Sigh. Yet, many do get better. Many have regained their lives. Usually not just with Rx alone, though. The rotations, combinations, integrated aspects are very complex. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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quote:Originally posted by Tincup: There are chemo drugs used for cancer that, in studies, have been shown to kill spirochetes and destroy biofilms.
Problem is- we can't drown someone in chemo drugs to help them get better. We'd kill them in the process.
Same with IV antibiotics. You can only dump so much into the body at one time before it dies.
You're comparing apples and oranges, IV antibiotics is no where near as dangerous as chemo. Honestly I think this is how some of you on the forum justify not using IVs because most cannot afford it and insurance companies wont cover it, so you make up stories to make you feel better.
Fact of the the matter is, Mandy Hughes reached remission within 7 months with IVs, while being infected for 10 years.
For Dr. J, that's all he'll treat with and Dr. B specifically recommended starting off with it for anyone with chronic Lyme.
And I specifically remember a few LLMDs claiming chance of recovery is small without using IV antibiotics at various ILADs conferences: "If someone has chronic Lyme but does not do IV therapy, the chances of them recovering are small." ~ Dr. B http://www.betterhealthguy.com/ilads-2010-conference-takeaways
There wasn't enough transparency in the Under our Skin docs that should of centered around insurance coverage and how intravenous antibiotics throw flags up for the CDC and thats why a lot of LLMDs were brought up on trial and now LLMDs are afraid to use them.
A lot of it just centers around money, because insurance companies don't want to pay 5k a month for IVs.
quote:Originally posted by Tincup: Blaming a LLMD or Dr. Sapi for trying to put pieces together in the lab or in a clinical setting isn't productive or fair.
No one's blaming anyone, I just feel LLMDs should be more transparent to their patients, please don't twist my words.
Lets talk about how the longer you're on orals, they're more likely to be toxic and destroy your liver...
No one's blaming Dr. Sapi, she's a genious doctor and appreciate all her work.
I feel you're not willing to accept the truth that a lot of these natural supplements are just snake oil to Lyme Disease and they aren't getting to the source of the problem.
A lot of oral supplements lack penetration because they just get broken down through the digestive tract, I still see people here making comments on Stevia being a biofilm buster.
If any of these natural supplements worked to the extent these people are claiming they have, we'd have a lot more patients shouting with joy they've been cured.
I think what I see here is, people who can't accept the fact that a certain class of people are getting better treatment, while others who can't afford it are left down to die.
I mean a lot of people can't even afford most of the oral antibiotic treatment they are prescribed, let alone the LLMD doctors visit.
I could also mention the medical care treatment that goes on in my home town of Detroit, which is bottom of the barrel. I'm sure there's plenty of Ticks and Lyme Disease out on Belle Isle.
Think of the treatment black people get when they're told they're infected, they're either diagnosed with Lupus, Parkinsons, or Multiple sclerosis. Which is a basic death sentence!
Lyme Disease isn't even in the vocabulary of people who live in poverty, they don't even know what it is.
The point I'm trying to make here is, is the huge divide that we're starting to see in medical treatment with the rich and the poor. Which a lot of you I think aren't willing to accept!
Don't think so? Well what about what happened with the Flint water crisis, that would of never happened in a rich community like Grosse Pointe in Michigan.
There's a huge difference between oral and IV antibiotics. Along with a lot of the alternative treatment Yolanda Foster receives.
I agree, no magic bullet yet, but that doesn't mean the rich don't receive a lot better treatment than the middle and lower class.
It kind of reminds me of the Aids crisis, where some rich people will say Magic Johnson has no magic pill or special treatment.
This is garbage, he gets the best naturopathic doctors and the best infection disease doctors money can buy! I think it's safe to say his money has helped him reach remission and stay in remission regardless if any of the drugs he used cured him. Get the point!
We can also talk about how many Vets couldn't afford the new Hepatitis C cure, which the VA just left a lot of them to die.
It just irks me when people on this forum give out horrible information there's no difference between orals and IVs, thats a bunch of bullcrap.
And the facts show it, especially since some LLMDs only treat with it and plenty recommend it.
A lot of patients with neuro lyme have to get IVs to reach past the brain barrier!!!! And that's what the article explicitly stated about the bacteria, how it can hide out in places traditional antibiotics can't touch.
quote:Originally posted by Tincup: Blame, in my opinion, should rest solely with the IDSA/CDC and their associates who have wasted 40 years doing nothing for us and harming us more than the diseases themselves, while sucking up all the research funding.
See that's where I think a lot of you are wrong. After studdying this disease, our government, and the way people react to it.
A lot of people still think we live in a Democracy, but don't fully understand why the CDC turns a blind eye to you and the end result, most of you pin all the blame on the CDC.
You need to start understanding that the government, political leaders and the CEOs of these corporations are the ones pulling the strings of the CDC.
Look at the media for instance, they're well aware how bad Lyme is, but you never see it on TV... Why do you think that is?
They publicize more about West Nile and Zika virus, which is basically childs play compared to Lyme Disease and what it's doing to the population.
All this isn't a coincidence why your political leaders choose to ignore you, it's never publicized on TV, it's turned into a disease that's easily cured within 2 weeks claimed by the CDC.
The more you understand your leaders worship capitalism and treat you as a commodity, the more you'll understand why things go on the way they do.
Our country could actullay pay out a fair wage, people could have a better healthcare system.
But rather trillions of dollars are payed out for War, rather than fixing infrastructure like the Flint Water Crisis. Yet I still see people justifying War and saying support our troops through the propaganda they believe in.
The more you understand the government you live in, the more you understand why the CDC never changes the guidelines.
And what's interesting is, like some of you moderators on LymeNet have said, you try not to talk politics on here. My question to use is, how can you refrain from talking politics when it directly relates to why the CDC guidelines never change.
Personally, I think the government and these rich families would rather depopulate, than pay a fair wage and provide a healthcare system which would make a happier world.
I think people are all for supporting their troops, supporting tax payer money used for hockey stadiums. Until they get sick or their own leg gets blown off in a war or their poisoned by lead from their city water supply.
Then they're wondering what the hell happened to our country??? Am I getting at something here, I think so!
People in general aren't very intelligent nor do we think ahead in many situations, people think in the now, and it's very sad what's happening to this country and the world around us. It's not good and it's gotta change!
And if you think none of this is related to Lyme Disease, Erich Traub and paperclip comes to mind after World War 2...
................................................
(breaking up the post for easier reading for many here)
[ 08-29-2016, 11:10 PM: Message edited by: Robin123 ]
Posts: 267 | From MI | Registered: Oct 2011
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Muscle car- you are very angry. I understand that- I stay angered on a daily basis about our situation. However, some of your comments are slightly, if not totally off base.
If you want to kick and scream, you'll need to look at more than you have so far.
You said... "You're comparing apples and oranges, IV antibiotics is no where near as dangerous as chemo."
Maybe in the movies, but in real life we can check the facts.
Study- 8.1% of those who infuse chemo die within 30 days of starting it-- this is due specifically to the chemo, not the disease.
Hospital Study- Of the 2,458 deaths identified 1,446 were from medications. The culprit drugs were not specified in most of the cases (approximately 74 percent). However, among those with an identified culprit drug, nearly half were antibiotics...
That's about 50% dying from antibiotics, and less than 10% from chemo. Certainly check out more studies if you'd like.
---------------------
You said... "Honestly I think this is how some of you on the forum justify not using IVs because most cannot afford it and insurance companies wont cover it, so you make up stories to make you feel better."
I make up stories to make me feel better? Sorry, I don't think so. More into the reality of the situation.
I used IV Rocephin back when it cost $2,000 per day for 1 gram. I used 2 grams per day.
I did four, possibly 5 rounds, long-term, of IV antibiotics- Rocephin and/or Penicillin and another drug that I can't remember the name.
I nearly died from the antibiotics/herxes, several times.
Seven times I was in the hospital in one year due to the antibiotics and many years- I think 17, maybe 16 years- with one or more stays and/or visits to hospitals due to the meds.
BTW- That extensive and very expensive protocol didn't cure the Lyme.
`````````````````````````````` You said... "You need to start understanding that the government, political leaders and the CEOs of these corporations are the ones pulling the strings of the CDC."
I have letters dating back to the early 1980's trying to address these things. Stacks of them. I think I got it.
----------------------
You said... "There wasn't enough transparency in the Under our Skin docs that should of centered around insurance coverage and how intravenous antibiotics throw flags up for the CDC and thats why a lot of LLMDs were brought up on trial and now LLMDs are afraid to use them."
I've been to all but a very few hearings for Lyme doctors (where patients were allowed to attend), and/or have researched for them and provided documentation to support their cases, and/or supported them publicly with articles, rallies and protests, and/or worked with their lawyers and legal teams to educate them and assist as needed.
As far as Under Our Skin goes- remember- it was a MOVIE. Plus, it couldn't possibly cover every second of the previous 25 years in less than 2 hours. And if you don't think Andy and the rest of the crew didn't know about insurance issues, you'd be wrong.
```````````````````````````````````
You said... "Lets talk about how the longer you're on orals, they're more likely to be toxic and destroy your liver... "
What then would be your recommended treatment? Or would there be any? Do we die from the disease progression or the orals and/or IV's. Your pick.
And that is why some chronic people do pulsing, take breaks and have additional treatment protocols they use to ease symptoms and build their immune systems.
And in my world I am VERY thankful each time someone here shares their experiences and knowledge for others to learn from. In fact, that is how "medicine" in the medical world works.
````````````````````````````````````` You said... "I still see people here making comments on Stevia being a biofilm buster. If any of these natural supplements worked to the extent these people are claiming they have, we'd have a lot more patients shouting with joy they've been cured."
You do realize the stevia was shown in the LAB to destroy biofilms, not in humans? Those studies are needed, but haven't even been started yet.
Dr. Sapi's work is amazing. But, it is only a newly discovered foundation to set the stage for further studies.
```````````````````````````````````````` You said... "I feel you're not willing to accept the truth that a lot of these natural supplements are just snake oil to Lyme Disease and they aren't getting to the source of the problem."
And how did Dr Sapi come to the conclusion Stevia would bust up the biofilms? Trial and error. She threw everything at it she could to narrow down the choices for us. What is just as important as what worked, is what didn't.
We are narrowing down the field in the lab, and soon to be in humans.
Example- Ibuprofen is to help relive symptoms- not to cure the Lyme- but take mine from me and you'll have a tiger on your hands.
In real life we must do what we can until the science catches up to reduce our pain, symptoms, etc and keep us alive.
````````````````````````````````` You said... "I think what I see here is, people who can't accept the fact that a certain class of people are getting better treatment, while others who can't afford it are left down to die."
I believe this has been going on since the beginning of time, and my bet is most people on this planet realize it.
Is it wrong? Absolutely. Is it tragically sad, you bet.
And I personally am doing all humanly possible to address the situation. Many others are also in this fight, but I can not speak for them. But, bless them for their efforts.
``````````````````````````````````````` You said... "One of the LLMDs I went to in Michigan has a pamphlet of supporting our troops, which shouldn't be in his office at all."
Is he a veteran? Are his children in the military? Were his parents and family in the military? Either way..
I honestly can't think of any reasonable reason anyone shouldn't be allowed to have a "phamplet" that supports our men and women in the military.
And there is that "Freedom of Speech" thing. Hoping you are not against that too.
``````````````````````````````` "It just irks me when people on this forum give out horrible information there's no difference between orals and IVs, thats a bunch of bullcrap."
GIVE out HORRIBLE information? Hmmmmm....
Ok. Show me the studies saying IV is superior to orals treating Lyme patients and IV's cure them where orals don't. (Hint- there aren't any.)
Here is just one showing IV and orals given to Lyme patients got the same results. (Hint- there are more where this came from.)
You said... "And what's interesting is, like some of you moderators on LymeNet have said, you try not to talk politics on here. My question to use is, how can you refrain from talking politics when it directly relates to why the CDC guidelines never change."
Not a good idea to slam the moderators. LymeNet owners and their rules prohibit talking politics. It is their forum and they have the right to make such rules. The VOLUNTEER moderators simply try to enforce the rules.
Plus, had you been here to see how ugly people got while discussing politics in the early years, you'd understand that talk is not needed on a forum designed to help sick people.
We DO discuss the CDC/IDSA's role in our demise all the time, but not bickering about election politics and the like.
```````````````````````````` You said... "People in general aren't very intelligent nor do we think ahead in many situations, people think in the now, and it's very sad what's happening to this country and the world around us. It's not good and it's gotta change!"
My thought is you need to find a political forum to post on that will support your opinions or to get a rise from others, whatever your goals may be.
I have found people here to be very intelligent compared to the general population. And very active- for example, there aren't many couch potatoes getting Lyme disease.
I agree we need change. And I personally have been working hard to make that happen, along with many other dedicated volunteers.
hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
I took 2 orals (rotating types) and then I took I.V. antibiotics (rotating types). Then I took I.V. and orals together. I could afford this treatment and insurance helped greatly.
I went from 110 pounds down to about 80 pounds, tore my stomach to pieces and it almost killed me. I started antibiotics 18 months after my first symptoms. THEY DID NOT HELP! (but that is not to say antibiotics fail everyone)
I have taken antibiotics twice for other reasons since then and puked my guts up both times, so I think too many antibiotics has ruined my future for taking them.
I went to Germany and did infrared treatment and improved a lot.
I went to an energy healer and improved even more.
Am I well, yet? No, but I will get there. I will fight every day to improve and I will depend on God every day to help me.
Everyone is different. There are so many remedies.
Some get well on antibiotics. Some get well with rife. Some get well with photon therapy. Some get well with essential oils. Some will get well with herbs.
And not to put down the better health guy, but every time I read his blog he is still treating something to try and get well. It is kind of him to share his successes and failures.
So, let the research continue and let us take what we can from the research and apply to our individual cases.
And let us keep the activism going to put Lyme in the spotlight so it gets the attention and research it deserves.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8888 | From Illinois | Registered: Aug 2004
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
IVs *are* equal to orals although it might be helpful to use both to "surprise attack" the little buggers where they're hiding. The problem isn't IV vs oral -- the problem is that antibiotic treatment does not cure Lyme.
It's all we've got and it doesn't cure Lyme, because Lyme has numerous tricks to aid in its persistence and also because no antibiotic kills all pathogenic bacteria.
When abx are used the assumption is that the immune system will take over and dispose of the rest of the pathogens after abx treatment.
So guess what, because of the major screwing our immune systems get we can't clear the rest of the bacteria and that is why antibiotics fail to clear it.
There's nothing to be mad at, and there's nothing about this that's hard to understand. it's just man meets microbe and for the most part we are losing. The rich, poor, young and old in every nation of the world.
(breaking up the post for easier reading for many here)
posted
Agree with Jordana - it can take more than antibiotics to treat Lyme. Treatment can occur in three areas - kill/deter the organisms, detox and fortify the body and we usually need to work on it in all areas.
I do better with natural anti-inflams myself, like turmeric, mangosteen juice, noni juice, grapeseed extract capsules, etc.
What you're talking about here, Musclecar, people have been aware of for a long time.
Thing is, it takes organizing to get things done. For example, some California organizations have taken on some wonderful tasks, like www.lymetap.com in partnership with the Rotary Club covers 75% of IGeneX test costs for those who are low income.
And www.lymelightfoundation.org has probably given close to 2 million in grants to young people under the age of 26 in the short period of its 5 years of existence. They are well-organized and experienced in doing fundraising.
It takes commitment, experience and organizing to do the things you're talking about. I don't think anyone has taken on the responsibility of funding adults yet, because the need would be overwhelming, essentially like having to do the job that insurance companies do. People haven't formed those insurance companies at this point.
It's not just railing about a need that we need to do - we need to discuss just HOW and WHO would be in a position to do something. And it would take quite a commitment to handle the adult need for funding.
I personally wish there was a national org for it with each state legally setting up their state branch, but I don't know how to do it.
Posts: 13116 | From San Francisco | Registered: May 2006
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quote:Originally posted by Tincup: Muscle car- you are very angry. I understand that- I stay angered on a daily basis about our situation. However, some of your comments are slightly, if not totally off base.
If you want to kick and scream, you'll need to look at more than you have so far.
I must appologize for coming off strong, I think a lot of us take it out on others who are in the same situation when debating this horrible disease and a crooked government/medical system. It's frustrating and I appologize, but I do feel some of the conclusions made on the forums aren't exactly accurate, nor is a lot of the information given out on natural supplements.
This might be why I've heard some LLMDs say stay off of the Lyme forums...
I think some information on the forums can be detrimental to new Lyme patients! Especially when they see success stories with Rife machines, then they spends thousands of dollars, rather than spending the money on natural pain supplements like Turmeric/CBD oil and antibiotics.
quote:Originally posted by Tincup: Hospital Study- Of the 2,458 deaths identified 1,446 were from medications. The culprit drugs were not specified in most of the cases (approximately 74 percent). However, among those with an identified culprit drug, nearly half were antibiotics...
That's about 50% dying from antibiotics, and less than 10% from chemo. Certainly check out more studies if you'd like.
Most of my conclusions were made with reference links, would appreciate a source link when you get a chance with these statistics.
I used references of some of the top Lyme Doctors which have made comments on IV antibiotics. Here's a new one, there was a top Lyme Doctor in Under Our Skin that said he would strap his family member down and put a IV in their heart if he knew they were infected. Along with Dr. B's quote in an ILADs conference "If someone has chronic Lyme but does not do IV therapy, the chances of them recovering are small." ~ Dr. B http://www.betterhealthguy.com/ilads-2010-conference-takeaways
I'm assuming a lot of those hospital statistics are from C. Diff, which is a major problem for those that do not take yogurt and probiotics. But basing the C. Diff deaths solely on taking IV antibiotics and not a doctor informing his patients on taking probiotics pills, yogurt, and kefir is ignorance I feel! Most LLMDs I saw, never emphasized on how C. Diff is killing people because they're not reintroducing good bacteria in their system, which is rather disturbing.
So you've come to the conclusion that IV antibiotics are more deadlier than chemo. You "trust" those statistics provided by the hospital/government? Regardless of what you know about the statistics of Lyme Disease, which we all know are lies and fabricated. And how a lot of doctors and naturopathic doctors say Chemo kills more patients than cancer? I've read various articles of Doctors claiming they would rather live with cancer and treat naturopathically then take radiation or chemo, because it kills you faster, and in the end, they'd have more time to spend with their family before they die.
Again, just being me, I'd never compare Lyme to Cancer, cancer is 10x more deadly. You can be 10 years gone with Lyme and still make a comeback. While 10 years with cancer, you'd definitely be dead. So again, comparing Apples and Oranges which I think you don't fully understand.
quote:Originally posted by Tincup: I did four, possibly 5 rounds, long-term, of IV antibiotics- Rocephin and/or Penicillin and another drug that I can't remember the name.
I nearly died from the antibiotics/herxes, several times.
So you know for a fact, the major sick feeling you were getting was from IV antibiotics and not the herxes and your immune system causing the inflammation? I'm glad you put "antibiotics/herxes" in quotes, so you kind of understand antibiotics aren't primarily to blame.
The one thing from my experience of taking oral antibiotics, yes I lost about 40 pounds from my own natural weight and was experiencing a lot of pain. I was not basing that off of the antibiotics I was taking. For one, the reason I lost a lot of weight was I had major allergies to food, so I couldn't eat anything. And second, the pain I was feeling was from my immune system attacking the bacteria after taking oral antibiotics, that's what causes inflammation, not IV antibiotics.
How do I know this? Well top LLMDs like Dr. B have numerously explained what causes herxes and inflammation! Our bodies have a hard time dealing with bacteria that die off. And our immune system is the major cause of pain because it's trying to kill the bacteria, in return attacks flesh as well. I'm not positive, but I'm assuming the immune system goes crazy after starting antibiotics because it gives your body a chance to fight this disease. The point I'm trying to make here is, yes it's true antibiotics do cause herxes, but to solely blame these symptoms on IVs? You should more be blaming it on the disease, not IVs.
You cannot, in quotes "demonize" or "stereotype" IV antibiotics because they didn't work for you. I think a lot of you that took IV antibiotics then felt super sick, are basing your symptoms more of the antibiotic drug, than the state of healthiness you were in, herxes you were receiving, and your immune system response that causes pain. That's my conclusion!
And a reason a lot of you have such failure with IVs, is not addressing coinfections and using a good combo drug like Flagyl or Tindamax which has shown to have much more successful results. Yes, Rocephin alone can be unsuccesfful, a lot of Lyme patients haven't had great results. But to sterotype then say IVs do not work and coming to the conclusion they're the same or equal to orals. I'm sorry, a lot of you lyme patients are basing your conclusions wrongly. This goes back to the John Hopkins study, which explicitly states how some antibiotics work and others dont for various forms of borrelia, such as persister cells.
Now I'm not going to ignore how antibiotics can build up your system and they can become toxic. I very much agree with that, you have to pulse them and take months off. Which in the end result is better to treat the disease, because they come out of biofilms and their cyst shells when they don't sense harm.
All in all, I just don't think they are deadly as lyme patients claiming they are, along with comparing them to Chemo.
quote:Originally posted by Tincup: However, some of your comments are slightly, if not totally off base.
After reading these responses I've made, now am I completely off base here?
I think the risk to reward ratio of using IV antibiotics outweighs the risks or the top LLMDs like Dr. B would be making these comments:
It's just the matter of using IVs at the right time(beginning) not middle or end of treatment. Pairing the right IV antibiotics up with right oral antibiotics that have shown to work, along with treating coinfections at the same time. Using probiotics to combat side effects of IV antibiotics and orals, such as C. Diff. And also detox to help herxes!
Sad to say, through my experience with the supposed LLMDs in Michigan, Michigan LLMDs do no follow the protocols of many of the top LLMDs at ILADs. Nor do they stay up to date with the latest news on what antibiotics work and what doesn't... Numerous times I had to reference Dr. Bs work on IVs, along with the John Hopkins study with various LLMDs in Michigan, they were completely unaware.
Starting off with one antibiotic such as Amoxicillin, which Dr. Z in Michigan does, is setting up patients for failure. His reasoning is herxes! Studies like Dr. Sapis have shown what this bacteria does if you start off with weak antibiotics, it throws the bacteria up in a state of defense, rolling up into a cyst or starting biofilms. As well as going deeper into tissue of patients.
Now I would say, weak oral antibiotics are better than nothing. It definitely stops the bacteria in it's place, however it can definitely prolong treatment of chronic Lyme. Without a doubt, you're better off seeing any LLMD in Michigan than any other traditional medical physician in Michigan.
I'm getting off in another topic kind of, but all this is still very much related. I think the offical protocols of ILADs who Dr. B and Dr. J are officially apart of, are to treat fast, hard, and effective. Or Dr. B wouldn't be making claims anyone with chronic lyme disease should be starting off with IVs first, then orals.
All I'm trying to do is clarify things, there seems to be two or three different worlds with LLMDs. Some start treatment with weak antibiotics, some start treating aggressively, and some just treat naturally. I think somewhere along the lines, many LLMDs distort and twist the facts, then it's repeated on the forums and sometimes that becomes traditonal treatment, while in the real world, the top docs at ILADs treat completely different and are having much more successful treatment.
That's all I'm saying and I'm not the only one saying in on LymeNet, I've been with this forum for five years, reading comments, trying to differentiate what's fact from fiction. And what many Lyme patients have said about some LLMDs in Michigan, which is "they don't treat aggressive enough."
I do understand we're trying to do our best with chronic lyme and I don't mean to knock the Michigan LLMDs, but I do feel that patients should be aware of the truth and how things aren't so black and white with Orals vs IV Antibiotics, the top LLMDs at ILADS, and the small LLMDs in other states. We live much in a grey area dealing with Lyme, which most of you can agree with, and when you bring this up on the forums, it's either said that you're blaming or scolding LLMDs. Which I was never doing, I have all these top ILADs doctors to thank for saving my life, along with the LLMDs in the state of Michigan. And lets not forget the internet which allowed me to find the truth on Chronic Lyme Disease and a LLMD here in Michigan. Yet we hear so many people making fun of the internet these days, along with doctors chastising it. I think the internet is our last line of defense for the truth, rather than the constant propaganda and lies we're told on the TV from our medical and political leaders. If I had followed what they said to do, with so many people have with autoimmune diagnoses like MS, Parkinsons, and Alzheimer's.... I'd be tagged on the toe ****ing dead, I have a lot to owe to the LymeNet forums, which helped me so much with finding a LLMD in my area. I feel I owe it to these forums give advice and share my knowledge on the topic of Lyme Disease, I don't think you or I(TinCup) are always correct on this topic. But I think we're a lot closer than any of the morons we call Infectious Disease Doctors or the ISDA/CDC. Which in my opinion, just want us to die and depopulate.
It's by no surprise to me why our capitalist leaders want to end net neutrality and put up a slow line and fast line for the internet.
quote:Originally posted by Tincup: Blaming a LLMD or Dr. Sapi for trying to put pieces together in the lab or in a clinical setting isn't productive or fair.
I feel new patients and veteran patients should be aware of my experience and knowledge, along with yours, and then make a decision on their own. A lot of times moderators come along and either ban some lyme patients for criticizing LLMDs or their comments get edited by moderators. That needs to stop!
I just hope some of you see from my train of thought!
Yeah, I think we all get emotional talking about Lyme Disease and how our leaders are dealing with it, because people are dieing. On that note, I just want to thank the LymeNet forums for all the information it has provided me to help save my life. I don't want to piss off anymore people on here.
[ 08-31-2016, 07:36 AM: Message edited by: Muscle Car55 ]
Posts: 267 | From MI | Registered: Oct 2011
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