posted
So lets assume that most things of the following things are true:
-there are many persistent infections (Molds, parasites ,bacteria , viruses)
- Most population is infected with them (I would say 100% but who knows)
- We lived with bacteria and parasites since the beginning of time
So the question is not really about whether you have some infections in your system- all people do, but whether it does the damage and the extent of it .Ideally all the infections should be kept in check by the immune system (and I bet that what happens in people who do not suffer from symptoms -they probably still have all same infections you do) .
So target imho should not be ever moving infection-du-jour, but our own immune systems. Infections are ever present -you cannot get rid of them ever, its part of our environment.
Now the suggested "mainstream" ILADs treatment for lyme is long term abx. ABXs are intended to be used with acute infections , short term . Running abx long term means you basically brute forcing the killing of bacteria with chemicals. to which they eventually adapt and then abx stop being effective. That is on top of the damage abx do to your system as side effects.
On the other hand we have "alternative" practitioners which seems to be using the approach of supplementing everything they can think of(just for sake of it) . My biggest problems with it - it costs **** ton of money (doxy for example is free while cowden condensed is $300/month - and that is just basic), often using anecdotal evidence (there are very few studies for effectiveness)
So why I havent read single paper in english for treating lyme aiming at actually boosting your own immune response? -there are drugs for it, clinically tested and proven to be effective .there are tests as well. What there is lack of is practitioners using that approach .
Posts: 856 | From MA | Registered: Jul 2009
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posted
I'm not aware of any pharmaceutical drugs that boost the immune system. There might be some available in other countries but U.S. medicine ignores methods such as that. Well actually there's low dose naltrexone which boost the immune system, but mainstream doctors don't even know what it is and insurance doesn't cover it. (I haven't even met a mainstream doctor that knew what probiotics were)
ILADS doctors use a lot of herbal medicines to increase or regulate the immune system such as cat's claw and many others.
Posts: 499 | From Indiana | Registered: Oct 2007
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posted
You might like the Bionic 880 approach with your way of thinking.
The thing is, our immune systems are so overwhelmed that the bugs need to be killed, too AND our immune systems built up. A healthy person could probably build up an immune system to resist infection, but once we're so overwhelmed, you have to do both. But you are correct that the terrain needs to be changed and balance reestablished because we do carry bacteria and parasites that are not harmful to us.
Long term abx have been used for years for acne and tuberculosis.
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nenet
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posted
TB and Syphilis are two well-known bacterial infections that need very long-term antibiotic therapy. Acne is also treated with years of antibiotics.
Syphilis is much easier to treat than Lyme, one reason being because it prefers to travel via the circulatory system, so antibiotics can reach it better. Late stage syphilis (when it is in the CNS and brain, etc) is very difficult to treat, but it is still far less evasive than Lyme.
Just thought this might be relevant to your thesis development.
Not all infections can be held at bay solely by the immune system.
sutherngrl
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posted
I think if the spirochetes were hanging out in your blood, then boosting the immune system might help; but they are not in the blood when it becomes chronic. They are very deep within your tissues, muscles, organs, CNS, etc. I don't think boosting the immune system at that point effects the spirochete. It is much more complicated than that.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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sutherngrl
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posted
And also, I think our immune systems are boosted. I think they are in overdrive already, due to the massive amount of bacteria overload.
I think some of our problems may actually be due to an over active immune system that developed in the process of trying to deal with the illness.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Lymeorsomething
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posted
Plus I think that Marnie has addressed the notion of bolstering the immune system through MgCl and other pertinent supplements...
You may want to look at some of her past posts...
-------------------- "Whatever can go wrong will go wrong." Posts: 2062 | From CT | Registered: Jul 2008
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Pinelady
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posted
It is right about the main stream docs not knowing
about things to help the immune response. Vitamin E
is excellent for building T cells and lowering
cholesterol, but you don't see many prescribe it
before one of the drugs that costs big bucks over
one that costs a couple. Why that is I don't
know. I guess the drug companies offer more for
selling that 200 bottle over the 2 dollar bottle.
But if they would just try it first they would
see. Not going to happen even with the latest
research.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Is it possible the spirochetes can thrive with better nutrition (vitamins) ? I know it sounds stupid but what are they feeding on?
Posts: 23 | From Southern Maine | Registered: Jun 2009
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MariaA
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posted
Again, Coltman-= have you read Cure UNknown (I understand that it might be too hard to read at this time)? It summarizes a lot of the science that answers the questions you're asking-
a few points not in direct response to your questions:
1) there are plenty of infections that ARE treated with long-term antibiotics. Syphilis and Tuberculosis are two, there are many others 2) look at the AIDS model. Yes, the HIV virus is what causes the problem. However, before effective drugs existed for combating the HIV part of the problem, patients would be treated by targeting the opportunistic infections and the coinfections, including our friends bartonella species. I think that most of the AIDS scientific literature that looked at opportunistic infectoins and coinfected patients pointed out that treating coinfected patients is more difficult than ones with just one infection, and that it's highly individual.
Lyme patients with coinfections are somewhat like that. There has been very little study of this because it's insanely expensive and difficult to study this issue, and there is little funding for good studies because the CDC, NIH, and other funders are dominated by scientists who staked their reputations on the idea that it's 'rare, easy to cure, and hard to catch'.
3)Lyme does not utilize 'antibiotic resistance' strategies in the same way that other bacteria do, partially because they have so many other effective strategies at their disposal. Borrellia species are genetically so much more complex than most bacteria, even more so than syphilis and other spirochetes.
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gemofnj
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posted
my llmd always recommends a blend of astralagus root and mushroom to boost the immune.
her theory is that if you get the immune system back up to full speed, it can fight lyme on its own. Hence no need for abx.
i did well on 9 months of abx and I am in remission.
My therapy included 4 different antibiotics during my course of therapy: doxy, biaxin, zithromax and rifampin, all as monotherapy. And, lots of supplements and probiotics.
To ensure remission, i am still using lots of good supplements, probiotics and a maintenance dose of TOA samento.
So far, it is working.
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Melanie Reber
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posted
"So why I havent read single paper in english for treating lyme aiming at actually boosting your own immune response?"
Perhaps you have not read 'The Bible' of TBD treatment guidelines... by Dr. Burrascano? If not, you are doing a disservice to yourself... if so, read it again.
Posts: 7052 | From Colorado | Registered: Mar 2003
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quote:I'm not aware of any pharmaceutical drugs that boost the immune system
So basically quick overview of immunomodulators, it is not a full list but most those are all pharmaceutical drugs which passed russian FDA etc. Not saying that our russian fda is any good - just it is not some unregulated supplements with clinically unproven claims.
2. T cell boosters TIMALIN, TAKTIVIN, TIMOPTIN, TIMOGEN TIMAKTID, MEGA-REATIM
3. B cell boosters SPLENIN (extract from the spleen of cattle), MIELOPID (supernatant of the culture of bone marrow cells of mammals) Oligopeptides: TAFTSIN, RIGIN, DALARGIN (opioid peptide)
4. DERINAT (sodium salt of native DNA, selected from milk sturgeon) .Vit C, Vit E ,Carotenoids, Cytochrome, MEGA-LININ (phosphatidylcholine) ,Coenzyme Q, Glutathion
native ones (I guess same ones used in IVG and such) 6.1 Interferon boosters (boost natural production by our own bodies) NEOVIR, Cycloferon, POLUDAN
There ares comprehensive articles about it , unfortunately they are pretty much unreadable if machine translated (this one is about chlamydiosis infection):
quote: 1) there are plenty of infections that ARE treated with long-term antibiotics. Syphilis and Tuberculosis are two, there are many others
And the thing is the russian protocols I read about treating chronic infections (bacterial,viral and parasitic) (including TB ,syphillis and many others) do include various immunomodulation strategies .- Granted they do use ABX as well (most same ones I read about in english articles), but not abxs exclusively
And those are not some fringe papers -they are pretty mainstream and many protocols been used for long time.
A pity I don't see any lyme related papers -as seem official stance is the same as IDSA one (e.g. chronic lyme does not exist)
quote: Perhaps you have not read 'The Bible' of TBD treatment guidelines... by Dr. Burrascano? If not, you are doing a disservice to yourself... if so, read it again.
Is it this paper you are referring too? I read it , nothing in it is really aimed at immunomodulation. ABX protocols + general support. Which seems to be general approach of ILADS LLMDs
It seems logical to me that any when treating chronic infection you would want get as much help as you can get from immune system . Some articles I read state that effectiveness of ABX is boosted sometimes 8-16 fold when combined with proper immunomodulation
quote: Is it possible the spirochetes can thrive with better nutrition (vitamins) ? I know it sounds stupid but what are they feeding on?
They most probably are. Thing is we need those vitamins and minerals more than bacteria does. - .e.g. we cant starve them to death before dying ourselves first.
Posts: 856 | From MA | Registered: Jul 2009
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Melanie Reber
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posted
Going back to your original question of:
"So why I havent read single paper in english for treating lyme aiming at actually boosting your own immune response?"
If you have read Dr. B's guidelines, which you say that you have... then you HAVE indeed read an English paper that supports boosting the immune system.
Pages 25-32 outline support measures. The first 8 listed suggestions are not chemical and do not cost any money. They are things we can do to support our immune systems that are basically common sense.
Pharm Grade and other Nutritional Supplements are then outlined. Is this not what you are speaking to with with your original statement re: excessive costs on certain protocols? Do these not boost the immune system?
Then there is a section on Rehabilitation. Is not carefully programed exercise one of the best ways to boost our immune systems?
"It seems logical to me that any when treating chronic infection you would want get as much help as you can get from immune system."
If this does not count as Immune System care, then I guess we are speaking of two different things.
I'm not here to disagree with you Coltman.
Posts: 7052 | From Colorado | Registered: Mar 2003
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quote: Pages 25-32 outline support measures. The first 8 listed suggestions are not chemical and do not cost any money. They are things we can do to support our immune systems that are basically common sense.
Well exactly. They are common sense suggestion .They are not "measures" for anything - unless you live extremely unhealthy lifestyle
quote: Pharm Grade and other Nutritional Supplements are then outlined. Is this not what you are speaking to with with your original statement re: excessive costs on certain protocols? Do these not boost the immune system?
Both. They do cost quite a bit and there is no definite proof of them boosting it enough. I mean most of the stuff he lists is common supplements (if one was ever were interested in exercise and sport supplements he would see mostly all familiar stuff) , thrown for a good measure.
My problem with most supplements is that I dont believe they are as effective as drugs specifically developed and clinically used for those purposes. On top of that drugs are usually much cheaper.
quote: Then there is a section on Rehabilitation. Is not carefully programed exercise one of the best ways to boost our immune systems?
If this does not count as Immune System care, then I guess we are speaking of two different things.
I do not quite agree with that common sense stuff is "best" way -cause if it was I would never be sick, since I followed most of the common sense stuff for long time before I even heard about lyme .
So basically your point seem to be - throw a few common sense measures and that should be enough for providing all support your immune system needs. that is basically repeating what IDSA doctors say about lyme - get a bit of rest, live healthier and all symptoms will go away .
I mean all of that is a must of course, but if you already followed the "health life style" and symptoms just keep getting worse it doesn't seem enough.
Posts: 856 | From MA | Registered: Jul 2009
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Melanie Reber
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posted
"So basically your point seem to be - throw a few common sense measures and that should be enough for providing all support your immune system needs. that is basically repeating what IDSA doctors say about lyme - get a bit of rest, live healthier and all symptoms will go away ."
Actually, no...that is NOT my point. My point was to answer your original question about ILADS physicians writing on boosting the immune system, which I feel I did. I'm sorry if you don't see it that way.
I'm also sorry that you are ill despite living a healthy lifestyle. It seems that most of us were infected doing just that too.
You are correct in your statement that doing the basic stuff is sometimes not enough to fight these devastating illnesses. That is exactly why we need pharmaceuticals to do their job.
I believe YOUR point, now... is the question of why aren't we also adding in these specific immunomodulators to help? I can not answer that question, but I think it is important to ask it.
However, I would just like to say that when you phrase a question upfront with negative connotations in regards to our treating physicians...
and then rephrase honest replies as sarcastic responses...
you just may not have many willing patients left to discuss your interesting questions with after a time. Just something to think about.
Posts: 7052 | From Colorado | Registered: Mar 2003
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quote: However, I would just like to say that when you phrase a question upfront with negative connotations in regards to our treating physicians...
Well I am sorry if it looks that way. English is also not my native language (which I thought is evident) so some things probably look offensive without my intent.
I also am ****ed of incredibly at the whole medical establishment and their approaches, which do not help me in any way.
Run of the mill PCP wont do anything AT ALL. (except charging for appointments)
And my frustration with LLMDs is pretty high already despite I had no appointments with any of them yet: they charge arm and a leg , and it is incredibly long wait . Their treatments seem to be less what I expect too (and I am really doubting whether it worth wasting whatever I have left on them)
"Alternative" treatments also cost lots of money (those herb protocols +supps cost a lot more than ordering non av abx online without insurance coverage)
I mean I wish I could order drugs and labs at low cost so I could treat myself without going bankrupt, but the system is rigged to make even that venue impossible
I am looking at whole thing and it looks complete mess. I can't chase every single zebra which seem to match symptoms , I am trying to get together comprehensive plan to fix it ,so I am researching every single venue (heck I even read a lot about rife ) .
I just cant sit there and rely on other ppl judgement (e.g. llmd's) when there seem to be so many holes in their theory
Posts: 856 | From MA | Registered: Jul 2009
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Melanie Reber
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posted
Yes, I can see your frustration, and I know that many here are frustrated about the same things as well.
Being pro-active is a definite advantage though, so I applaud you for taking the time to research and for trying to find other viable alternatives.
The whole thing IS a complete mess! But, we are doing our best with the circumstances presented to us. Please remember that the remaining LLMDs are our lifelines who put THEIR licenses on the line to continue treating us.
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Pinelady
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posted
As for the supplements that are recommended.
It is quite common for a lyme patient to not feel
like running to the store, much less cooking a full
course meal at any time of the day. In order to get
the nutrients to help us replace cells lost in
treatment it would be most beneficial if at least
we could get some vitamins in. Thank God for Chicken Noodle.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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MariaA
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posted
One thing I'd like to point out about Russian medicine versus American medicine is that the Russians researched some adaptogens- herbs that have immune modulation effects- long before Americans took an interest in them. Eleutherococcus was the first of those herbal extracts that they started looking at in the 50's or 60's, a line of research that was heavily supported by the government as part of a search for a 'super tonic' for athletes and workers. It was followed by a wide search for others after eleuthero was shown to be highly successful at improving work performance, athletic performance, and helping people fend off illness. I wouldn't be surprised if they actually did have more immune modulation pharmaceuticals now that don't gain the same attention in the US.
There were several fascinating reasons why this took off there and not so much in the US (I'm 37 and from the former USSR so I know a bit about this beyond just reading American herbalists). One reason why they focused on herbal-derived medicine, which led to all the discovery of and a lof of focus on adaptogens/immune modulators in the 1960's, is that the state of pharmaceutical medicine there was terrible at various times. Another is that Russians and other Slavs were less biased against herbal medicine than American doctors and researchers were at the time. There's a historical reason for that in America, having to do with a political smear campaign by the fore-runners of the American Medical Association to wipe out competing factions of doctors, which happened to be a group of physicians who used herbal medicine alongside early pharmaceuticals.
So I'm pretty sure that Soviet-era and probably later Russian-era medical research science has focused on different things and I'm pretty sure that they don't do a good job communicating with American researchers due to the translation issue you brought up. Anyway, when the Soviets discovered adaptogens accidentally, I think they started down a research path that I'm not sure Americans have replicated.
I'm somewhat working on an essay about all of this, my Lymebrain-addled very rough version of it is here, at a somewhat hippie New Agey sort of herbal forum:
posted
Very good!!! I never would have guessed English is not your native language! You use slang better than I do .... and you don't have the "normal" mistakes that non-native speakers make. Good job.
You're thinking outside the box with Lyme. That's good, too. Figure out what you're going to do then follow through. People who jump around from "miracle cure" to "miracle cure" don't seem to make a lot of progress, but those who choose a treatment and give it a fair chance, do, whether it's alternative or conventional ILADS.
It's just important to know when to switch things around a bit .... when you're truly not making progress. Detox, immune building and something to kill bugs is what it takes.
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