Topic: Spoke with Researcher at Major Univ re: Lyme Research
Bugg
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posted
HI Everyone-
I thought about posting a few of the highlights from my recent conversation with a researcher/friend from a major medical university re: the status of lyme research. However, some of his points primarily have to do with autoimmunity. I realize that's an upsetting subject for many on this board and I would NEVER want to make anyone feel bad.
Is that something appropriate to post or should it remain a topic that's not to be discussed...
...just trying to disseminate info to some who might be interested...If it's too controversial, no worries....
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sixgoofykids
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I'd love to hear about it!
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-------------------- kristi in Palm Coast Posts: 24 | From palm coast, fl | Registered: Apr 2011
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sammy
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I would also like to hear more
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Amanda
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I'd like to hear. I'd also like to know what University....
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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posted
Well, doesn't Lyme cause auto-immunity? If not, I somehow just happened to get them both at once. So yes, please share. Thanks.
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James1979
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I would HATE to hear about this!
...
Okay okay, I was just kidding. I just wanted to be different.
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Razzle
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Yes, please do share!
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4167 | From WA | Registered: Feb 2011
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Bugg
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I basically asked my friend who is a major cancer researcher (not a lyme researcher) to determine anything he could regarding the existing state of research for lyme. He is with a major research facility at a major university but not Yale, Harvard, or Columbia.
In a nutshell, he reiterated what many of us have already heard:
He said it appears quite clear that existing research and impending research reflects that there is an autoimmune component in lyme disease for some patients. He said research is still in the exploratory phase to determine whether this autoimmunity is due to genetic factors (someone has a predisposition) or whether it is due to being bitten by a different strain of borrelia.
To date, the researchers have not yet 'mapped' the immune system reactions in post-lyme patients aka chronic lyme patients to understand yet the causative nature for the autoimmune reaction. In other words, they can't tell yet, for ex., whether certain antibody reactions etc are particularly similar to that of another autoimmune disease.....this means they aren't to the stage of suggesting any drug modalities/treatment for cause much less symptomatic relief.
He pointed out that certain autoimmune diseases can often exhibit similar symptoms but have very different causative/immune system actions.
He said as they map more of the immune system differences between healthy post-treatment patients and those with PLS that they will most likely try "existing" drugs as a first line of therapy.
If you haven't deduced this by now, I had asked my friend to look at the areas they have mapped to "guess" at any mimicking autoimmune illness that might be suggestive of a treatment option for PLS. He, of course, reiterated that the research is still in the exploratory phase and he couldn't venture to guess based on the current data.
Bottom line, though, the research continues in the direction of autoimmunity by the major universities (Columbia, Harvard...)....either a predisposition to autoimmunity or a autoimmune reactivity to a particular strain of borrelia...
I hope this makes sense...Again, just my friends "two cents" for what it's worth...Please don't shoot the messenger!! Also, I've noticed some of my posts are being reposted on other boards. I don't mind normally but I would like for this one not to be reposted. Thanks!
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sixgoofykids
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Thanks for sharing.
It's too bad this issue is so devisive. It's a complicated illness and the different ideas need to be shared so they can get an answer.
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glm1111
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Amazing that not one of these Major Universities has not even looked into the parasite component of Lyme disease.
Especially when Willy Burgdorfer found Adult Filarial Worms in the ticks he dissected. Instead they want to continue searching for some phantom autoimmunity.
Eva Sapi a researcher from Connecticut found that 30-40% of ticks are carrying this infection.
Dr.K. and some other LLMDs have established parasites as a MAJOR problem and treat this FIRST and Lyme SECOND.
I just don't get why these researchers never consider this. It's mindboggling and scary. They still think parasites are a third world country disease.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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James1979
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Gael - not only that, but the researchers don't even consider the possibility of an ongoing active Borellia infection! Something smells...
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Bugg
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Just playing devil's advocate, but if there is an autoimmune component for some of us, then it may be especially important for that subset of patients to monitor their Vitamin D3 levels and B12. Many with autoimmune diseases have low Vitamin D levels and may have malabsorption problems with B12....Both are so important for proper immune, muscle, bone, and nerve function....
Posts: 1155 | From Southeast | Registered: Oct 2005
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Thanks for reporting. What you are saying is what I have also noticed as well.
I do find this upsetting for several reasons. For example, Columbia was not interested in seeing hubby as part of the 2nd opinion program. Yet he would be a very good patient to test some of their theories on.
The thing that is relevant about hubby's medical history is that he had many many tests 10 years ago when he first got sick and was undiagnosed and untreated for about 3 years. Some of those tests were similar to the new tests the researchers seem to be pushing.
Hubby had a series of tests from a couple of different labs over a couple of years for antibodies against myelin and also against both peripheral and central nervous system components.
He did have abnormal results on many of those tests. But hopefully others can be encouraged by the fact that he has not developed any autoimmune diseases.
His treatment was very slow and not aggressive until the last couple of years. Personally I do feel that the nutritional supplementation we have done is what kept him from developing peripheral neuropathy or some other autoimmune disease.
But wouldn't it be interesting to retest and see if he still is producing the antibodies against his nervous system -- the 2 labs we used are no longer in business.
I do think that now that the genome has been mapped it would be very useful if they could develop tests which would tell people which strain of borrelia they have. I do think that has a lot to do with whether you get the arthritic form or a rash or neurologic lyme.
Hubby has 4 or 5 white matter brain lesions, but those have not changed over his illness except for maybe there is 1 less lesion. His SPECT has worsened over the last 3 years from mild to moderate global hypoperfusion to moderate to severe global hyoperfusion. But his Parkinsonian tremors and myoclonus and dystonia were pretty much gone after 9 years. And his seizure-like spells pretty much went away after 10 years and aggressive bartonella treatment.
One very interesting observation hubby recently made about IV flagyl is that even though it causes fevers it not only makes his brain feel better, but it stops what little bit of neuropathy he has in his left arm. Not sure if that means lyme and cysts are still trying to attack his nerves or if it is babesia that the flagyl is working on.
In addition to the B12 mentioned by Bugg I think that phosphatidylcholine is probably one of the most important supplements -- especially if a person also has babesia.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
Well you know what they say about opinions. Anyway, here are my two cents. I kind of think they are going in the right direction with this... to some extent. I think that the HLA DR test that shows a genetic problem with detoxing, would make the immune response look like an autoimmune situation, but in reality the body is attacking toxins that that the body can't get rid of fast enough. I know people who have been bit by ticks like crazy and never get Lyme disease. I totally think it is genetic.
Posts: 845 | From Northeast | Registered: May 2011
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posted
Why would research or discussion about autoimmunity upset people??? Why is this controversial? It only makes sense to me that research into a chronic condition involves the immune system. I don't have Lyme, my husband does. I do have an autoimmune disease.
I am new here. Ladybug
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James1979
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BP-Ladybug - It truly might have an autoimmune aspect, and it's already shown that certain patients do have an autoimmune response.
The problem (and the controversy) is that there are tons of peer-reviewed studies that show that patients can have an active infection after 1 month of antibiotic treatment. The US mainstream medical communities are completely ignoring these facts. Instead of trying to figure out how to cure the sick patients who are having an active infection, they have spent the last 15+ years trying to find an auto-immune condition.
Here's a good quote from Dr. Steere (on the IDSA side): "We haven't found it [the auto-immune condition] yet, but I'm positive it's there." That, my friends, is not science. If you ask him if there's a possibility for active borellia infection after 1 month of antibiotic treatment, he'll tell you "no". That is a straight lie.
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posted
My neuro symptoms prevent me from posting very thoughtful and educated resposes on this but in other areas it appears to be that there is a genetic predisposition and then a "trigger" that only affects those with this predisposition
One that comes to mind is vaccinations and autism (again, controversial but it does happen). Why do some kids have seizures (like my daughter) after vaccs but others take them fine?
So it just makes sense that for Lyme that might be the same. I have autoimmune disease (allergies, sinus issues etc) and I got bit by a tick, and now I am really sick. I wonder if my hubby, who has a much stronger immune system, would have gotten as sick from the same tick bite.
I think that theories about what predisposes someone to be more susceptible to Lyme are completely logical and within the realm of possibility.
That's probably why it took so long to dx Lyme in so many people. I was tested/dx with lupus, sjogrens (sp?), CFS and fibromyalgia before Lyme.
Thanks for posting this information. I don't know the research like some of you but it makes sense to me
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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sutherngrl
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Here is something I heard from a LLMD concerning this subject. He said that if after treating LD for years or however long, if you have a few lingering symptoms, for example knee pain, hand pain, etc. This could be an immune reaction brought on by LD.
If you go off antibiotics and are still infected you will gradually become sicker and sicker; but if you stay the same, with the few lingering pains that you have, but nothing gets any worse then it is an immune reaction, and should be treated with Plaquenil or a similar medication for approx 6 months; and in most cases this will get rid of the immune reaction or you could call it post lyme syndrome.
To me this makes sense. It is not the same as post lyme syndrome that some physicians(IDSA) speak of.
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James1979
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The problem that I think everyone is missing here is that the researchers are NOT trying to help the patients!! They are trying to help the insurance companies!!
Also Big Pharma wants all cases of chronic Lyme to be on autoimmune/rheumatoid meds, so the only studies they are funding are those that prove this purpose.
If these researchers really wanted to learn more about this disease and to help the suffering patients, they would do studies on WHICH antibiotics are the most beneficial for HOW long. The fact that they conclude that nobody should be given antibiotics for more than 1 month for Lyme, is proof that they have other interests in mind.
The only thing they keep saying is that: "The problem is not an active borellia infection. The infection is gone. Only an (as yet unknown) autoimmune response remains."
It's okay to search for an autoimmune response (which they haven't found yet), but at the same time PLEASE admit that active infection is possible after 1 month of antibiotic treatment, and PLEASE research on how to cure these persistent infections!
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annxyzz
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Ditto James. I do not believe in an autoimmune component , but my view is not valuable anyway . I think the Hell we experience is from INFECTIONS . I was Diagnosed w/ CFIDS for 10 years before a lyme DX. I knew implicitly an infection was my problem - a very bad one . I was right , and only began to get out of pain and bonecrushing fatigue and chills after adopting an approach to attack infections.
Frankly , I am not sure I believe in "autoimmune diseases " after the reports I have read at "The Road Back " website , where the reports of people being treated for autoimmune diseases prove some are reversed with ABX . ( YES , even with diseases like RA or scleroderma. ) I often wonder if RA or MS will one day be treated w/ antiinfective drugs or botanicals. Most of the "treatments " for these autoimmune conditions seem very toxic , and I wonder if the autoimmune reaction is actually the immune system fighting a pathogen.
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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posted
Even the docs are highly political with this...one doc I saw at a major research hospital would not even test me for lyme saying I had been treated adequately
A friend who has done some research with Lyme warned me not to go to that hospital saying all docs there did not believe in chronic or recurrent Lyme. How can all docs in a large practice think the same? Guess they are being told by the researchers at that hospital what to think and what will be supported. So you are correct.
-------------------- Tick bite in 2006, bullseye rash, treated with 2 rounds of 2 weeks of doxy. (once in 2006, once in 2009) Dx with chronic Lyme May 2011. LLMD April 2012, Treating with omnicef/zith Lots of supplements! Posts: 640 | From Connecticut | Registered: Apr 2011
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posted
When policy makers, bean counters and researchers understand Borrelia, their biofilms and co-infections � then study their effects on the immune system, then there will be progress. Until then, people will be tortured with need less suffering.
A reminder that Borrelia takes many forms outside human cells, but once tunneled inside human host cells, take hundreds of different pleomorphic forms. When they tunnel into human host cells (like Chlamydia pneumonia), that�s when they can present odd (auto-immune) conditions that some doctors see, but don�t diagnose the root cause. The �body� or �immune� system is simply attacking something inside one of �its own.� How can so many people in the past few decades suddenly have their own bodies attacking themselves? Come on people, let�s start using our brains.
Strangely (sadly), this notion of pleomorphic forms causing autoimmune problems was proven almost a century ago with syphilis. It is amazing that so much education and knowledge has been swept under the rug. Not away, just under the rug.
-------------------- My biofilm film: www.whyamistillsick.com 2004 Mycoplasma Pneumonia 2006 Positive after 2 years of hell 2006-08 Marshall Protocol. Killed many bug species 2009 - Beating candida, doing better Lahey Clinic in Mass: what a racquet! Posts: 830 | From Mass. | Registered: Aug 2006
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James1979
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Even if the doctors at such hospitals believed in chronic/persistent Lyme, they would still have to pretend like it doesn't exist.
If they admit that chronic/persistent Lyme exists, they could lose their jobs. They don't really have a choice.
And the same happens with the researchers: If they say they want to do a study on how to cure active chronic Lyme infections, nobody would ever fund them, and they could lose their reputation. If they say: "Hey, let's try giving 'post-Lyme Syndrome' patients rheumatoid arthritis meds!", they'd get tons of funding and research grants.
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Bugg
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I just think so many things are going on that we don't have answers to which is so frustrating to many suffering people.
Take an example of just one case where a person suffers from encephalopathy from lyme which can cause severe cognitive dysfunction, muscle pain, joint pain, and nerve pain. Many oral abx just don't touch this. The person goes on IV Rocephin and gets better but still feels extremely ill after ceasing the Rocephin.
Perhaps if you measured this person's autoantidodies they would be markedly more reactive than another lyme patient who was less impacted by the disease. Even though the person may have 'overactive antibodies' this DOESN'T NECESSARILY MEAN IT IS THE CAUSE OF THEIR SYMPTOMS. In other words, what about the severe nerve impairment aspect that can leave this person fatigued and with pins and needles and joint pain for years....
In other words, if you solely focus on the immune system you may be ignoring other causative factors for the continual suffering (ie an atomic bomb of impairment upon ones nerves that needs to be addressed)
Also, isn't it possible that lyme patients with encephalopathy/nerve impairment suffer from other conditions which arise from long-term nerve impairment? For ex, in some people with long-term neuropathy, you will see that they have malabsorption issues and cannot get the proper nutrients they need. Their bodies typically need more Vitamin D for example. Also, they may have to take B12 sublingually because their gut absorption is impaired....
So many lyme patients have normal nerve conduction tests and inflammation markers so we get 'passed over' as having a serious nerve impairment....well, many MS patients have normal nerve conduction tests but are still seriously impaired...
As with people with diabetic neuropathy for which there a number of nerve-treating modalities, where are the studies for the lyme patients suffering from nerve impairment issues???? They treat many of these diabetics who have normal serum B12 levels with high doses of B12. They test lyme patients' blood and our serum levels are normal and they dismiss us as needing B12. How can scientists say our nerves don't need higher doses to heal when they haven't really studied our nervous systems???
In my opinion, the tests just don't really exist to show the way in which lyme patients' nerves are impaired.....I wish scientists would also focus on this area instead of just looking at the immune system...Nerves impact the immune system and vice versa....
Ok...I'm off my soapbox....
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Have heard of a doctor who says the autoimmune markers go away when the patient has been successfully treated. What does this tell you?
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seekhelp
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Bea, not to get off subject but can you please explain more about phosphatidylcholine? What dose does he use? It is expensive? How has it helped him? Thanks so much. Feel free to start a new thread if you think appropriate.
quote:Originally posted by seibertneurolyme:
In addition to the B12 mentioned by Bugg I think that phosphatidylcholine is probably one of the most important supplements -- especially if a person also has babesia.
Bea Seibert
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scorpiogirl
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quote:Originally posted by RC1: Well you know what they say about opinions. Anyway, here are my two cents. I kind of think they are going in the right direction with this... to some extent. I think that the HLA DR test that shows a genetic problem with detoxing, would make the immune response look like an autoimmune situation, but in reality the body is attacking toxins that that the body can't get rid of fast enough. I know people who have been bit by ticks like crazy and never get Lyme disease. I totally think it is genetic.
I agree with you. I have the Dreaded genotype therefore my body does not detox well. This could explain why I am more sick then most people. On the other hand... I personally know this family 3 generations, all tested positive for Lyme and co-infection all but the two male in the family have symptoms. Their LLMD said even w/ a CDC positive test they do not need to be treated because they have virtually no symptoms! I am struggling to understand that... how some people can have Lyme but are asymptomatic while people like myself are near death?!
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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canefan17
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The autoimmune component is caused by the buggers.
Buhner's book gets into great detail on how to modulate the immune system for this very reason.
Knotweed Turmeric Bromelain Pycnogenol Quercetin Omega 3's NAC ALA Vit D
All play a role in modulating an overactive immune system (us chronic cases)
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Rumigirl
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Yes, Bea, can you say more about the phospatidylcholine hubby is doing? What kind, what dose, orally? I was told to do this, first orally by one LLMD (but it was going to cost $325/month at the dose he recommended), and IV by another LLMD, which would have cost $300 or more per week!
But I think I need to revisit this.
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Rumigirl
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Lou is right above (and others said similar).
The main "researchers" of Lyme have been the same ones hogging all the research $$ for 30 years. They ARE NOT interested in helping patients or finding the truth one iota. They are interested in their patents on tests and vaccines. And their $$ from insurance companies for saying Chronic Lyme doesn't exist, and no one needs treatment beyond 1 month.
And they know the truth perfectly well. Their own prior research says the exact opposite of what they are promulgating so vociferiously in the Guidelines and in the press. You can read their prior research online. So much for integrity.
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Bugg
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Hi All-
I thought it would be helpful to post the study referenced in this thread. As you can see from the comments in this study, one of the physicians from Yale thinks it may not necessarily be an autoimmune component but almost like a cytokine storm caused by a very reactive immune system...
I don't think it's disputed on this board that many of us feel like we have to battle the cytokine reaction....Personally, I feel that higher doses of Vitamin D have helped me more than anything with this....
Lymeorsomething
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At least UNH is still actively researching the persistent Bb aspect of this illness...
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nefferdun
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I agree that the researchers are only interested in proving their pre-determined theories, Steere being the perfect example. It is not science.
Of the track slightly, there was a study on the news where doctors took the blood of three leukemia patients, removed the T cells, programed them to recognize the cancer and then injected them back into the patients bodies. Within months all of the patients were improving. They were expected to die and now they are in remission.
The only side effects was severe flu like symptoms - a herx?
This research was privately funded. The drug companies and government would have nothing to do with it but now they are jumping on it as it could present a cure for many forms of cancer.
What about babesia? Seems like the perfect solution to me.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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nefferdun
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PS The problem with Bb (the way I understand it) is that it changes it's protein coat to cloak itself, so the immune system is constantly tricked. It can also attach it's old protein coat to the cells of the body causing destruction by friendly fire. It is not a true autoimmunity.
As the scientists have resisted every bit of research that proves Bb is chronic because it evades detection from the immune system, the basis for their discoveries are flawed.
I don't believe I am genetically programmed to be a victim.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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