Be cool and Thank God you're doing what you're doing....Rich
( next time I'll say what I really mean... )
Posts: 208 | From Hudson Valley, New York | Registered: Mar 2008
| IP: Logged |
Angelica
Unregistered
posted
There are a few negative people over there who attack anything they think is different. They have nothing better to do with themselves all day. It is rather sad.
You are better off ignoring them and consider the source. They are not well.
IP: Logged |
Dawnee
Unregistered
posted
Pfft... what the heck? Its obvious you can see what you can see. Oh well... their loss. I love reading your updates on the study!!!
IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
BTW, most of them are not from Europe. A couple were banned from lymenet for their hostile and abusive behavior and a few of their devoted followers went with them to Lymenet Europe.
But they can't quite draw themselves away from here. They keep lurking around here and then running to LNE to gossip and sneer. They are really pretty pathetic .
Don't worry, James, you are in good company. Several people who are well thought of here get smeared over there.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
jamescase20
Unregistered
posted
Thanks for your support.
I am only doing this because many dont have the ability to check there blood daily.
IP: Logged |
Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Some banned people from this forum post on Europe lymenet.
I live in Europe and I never visit Europe lymenet as there are barely anyone from Europe ther. I feel it's pretty dominated by the banned people.
You can write a complain to the board administrators, that's what happened before here, and they might take some measures against them.
Posts: 6199 | From Brussels | Registered: Oct 2007
| IP: Logged |
posted
I have NEVER been on Lymenet Europe. They must be a bunch of Low Life's, who find fun and entertainment in James work.
Lyme Net has GIVEN me the knowledge I need to fight this disease.
Please don't brand us all, as stuck up know it all's, as I know I have still much more to learn.
Thank you, to all on Lyme Net. Posts: 153 | From England | Registered: Jun 2008
| IP: Logged |
lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
James don't worry about the fools over at LNE. They aren't even worth considering. Anyone who flames on sick people even if they them selves are sick is barbaric. Personally, I don't see them having much of a conscience, good will, nor virtue. They are tyrants of their own point of view.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
| IP: Logged |
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
hi James--
please listen to the advice everyone is giving you-- ignore what gets said over at "Lymenet Europe."
from personal experience i know there is no possibility of having a rational dialog with almost any of them (a few who still post here excepted).
to give you a flavor, the LNE folks have accused me of many things, my favorite being of conspiring to destroy and pervert Lymenet,this board.
I think the weirdness began because I went there to ask them to stop their ceaseless tearing down of TC, and I became a target of their odd wrath. They never seem to let go of that wrath or their targets..
So hey, word to the wise- save your breath. They aren't worth it.
hugs, dilly
[ 19. August 2008, 01:44 PM: Message edited by: sometimesdilly ]
Posts: 2507 | From lost in the maze | Registered: Aug 2006
| IP: Logged |
djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
its those jerk0#$@ cave and her compadres.
they tear up anything that is out of the box because they are miserable and are still on these boards after 10 years or so...
laugh it off james, stay off LN europe,and continue doing your work. its interesting and informative. dont let the negative nellies get you down.
im gratefulthey are no longer here, they talk smack about a lot of us, me included. who cares. we arent in high school anymore, i duno why they act like it.
hahaha. needed a laugh anyway.
keep at it james. to hell with them
derek
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Unbookmark it and don't read it.
That's what I did. I found some valuable info that had been posted there on Bionic 880 from a German site, but beyond that, when I read it for a few days, all new posts consisted of bashing posts from over here. If that is not the MOST unconstructive behavior I have ever seen. Even if I once liked some of those folks in their online personas, I don't think they understand how self-destructive and useless their activity is. They will rationalize that they are performing a public service that they were rudely banned from doing, a public service to prevent false, misleading, unscientific information about treatments from being promoted on "lymenut", but they are wrong. The reason they are doing it is they're still suffering and they are resentful they were banned, and so they've formed a little club of bashers. I was hoping I'd see good info and good posts there but I don't. If they want to become a solid, good resource for the type of information they think is valuable (on, say, antibiotic treatment) they should post on that. But they spend their time like a club of tittering highschool girls whispering about the clique they can no longer get into.
Of course, they aren't happy, they are suffering from lyme, so you can forgive them, but don't pay any attention to them.
Therefore, continue to post here. Don't waste *your* time reading what they write about you or you'll fall into their trap. I also find various yahoo groups valuable. Lyme-Aid Buhner is interesting, and also ProHealth (ImmuneSupport) has good info. Some smart info about mold toxicity there.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
By the way-
I really hope that at some point the folks at LNE turn their focus on making the site the rich source for scientific and medical info its founder meant it to be.
I love Lymenet, and it is many things to many people, but IMO, it has never been organized or used in a way that made it easy to find purely scientific or medical resources here.
dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
| IP: Logged |
D Bergy
Frequent Contributor (1K+ posts)
Member # 9984
posted
I have been following your posts with great interest, even though my time is real limited right now.
Whether your experiment works or not, you will gain some valuable information. As one experimenter to another, I appreciate you sharing your information.
My wife can not tolerate MMS due to stomach irritation, but most people can.
Everyone should be aware that your methods are experimental and if they are not comfotable using these methods they should not attempt to do so.
We still can learn a lot by following your progress. I hope you continue to post your results for my benefit and others.
Nothing notable is accomplished in this world without undue criticism. It just goes with innovation.
Thanks for the updates.
D Bergy
Posts: 2919 | From Minnesota | Registered: Aug 2006
| IP: Logged |
Dawnee
Unregistered
posted
I've never been to LNE, and after reading that..never will. It seems like a lot of them just prey on other sick people. They have issues for sure.
IP: Logged |
jamescase20
Unregistered
posted
Again, thanks for your support.
IP: Logged |
feelfit
Frequent Contributor (1K+ posts)
Member # 12770
posted
Igonore them James. Most of them cannot come to this forum to slam you because they have been banned.
That speaks for itself.
What you are doing is radical and brave, I for one look forward to your updates more than anything else posted.
Feelfit Posts: 3975 | From usa | Registered: Aug 2007
| IP: Logged |
suki444
Unregistered
posted
Hi James As you know in the UK darkfield microscopy is used by one of our only LLMD's so I'm not sure how they can dispute this.
troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
James,
I left this board due to similar issues happening here...eventually they cleared it up and the harrassment sems to have ended...although I will say....just about everytine I start reposting here...those old ugly people raise their head on here.
In fact, I am surprised that some of these people are still allowed on this website.
trout
Unfortuanately....politics....seems to ruin everything.
-------------------- Now is the time in your life to find the "tiger" within. Let the claws be bared, and Lyme BEWARE!!! www.iowalymedisease.com [/URL] Posts: 5262 | From North East Iowa | Registered: Sep 2002
| IP: Logged |
13 years Lyme & Co.; Small Fiber Neuropathy; Myasthenia Gravis, Adrenal Insufficiency. On chemo for 2 1/2 years as experimental treatment for MG. Posts: 4480 | From Northeastern Connecticut | Registered: Jun 2005
| IP: Logged |
posted
James, I appreciate your determination to find a solution and applaud you . This is a " SAVE YOURSELF " disease , period . Everything is experimental. so I do not understand why so many criticize trying different approaches that are not life threatening .
Does MMS work on Babesia ? Can you explain MMS and where it can be found ? Thanks for your perseverence ! ann
If you want to really show them your method has validity, you need to take it to the medical community. Find a LLMD (seriously here- M.D. Not N.D. Not a "Provider". M.D. ) and have them confirm what you are seeing, AND be willing to take your cases to colleagues. I know you said that you had a specialist, but that person's credentials at both technical and clinical understanding of what they're looking at, could be called into question.
Edit: Also, have you considered tigecycline as an alternate efflux pump inhibitor?
Good luck to you.
Posts: 690 | From East coast, USA | Registered: Jun 2006
| IP: Logged |
posted
I've visited Lymenet Europe a couple of times. They're all so high on their own cleverness. If you want a forum for out-of-the-box ideas to get better, LN Europe is less than worthless.
I think a lot of LN'ers would agree that cave76 getting banned from here was one of the best things that could ever happen.
Posts: 655 | From USA | Registered: Sep 2007
| IP: Logged |
TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Blackstone wrote: If you want to really show them your method has validity, you need to take it to the medical community. Find a LLMD (seriously here- M.D. Not N.D. Not a "Provider". M.D. ) and have them confirm what you are seeing
Blackstone, The ND's in my State have the same training as an MD and MORE. They are allowed to write prescriptions for pharmaceuticals. They *are* part of the medical community. There are a number of ND's who are members of ILADS.
Of course, not all States are the same as far as requirements but perhaps you should consider this when you make a judgement about the credentials of ND's.
I doubt that most people here feel a need to prove anything to the members of LNE.
James - look at the source - LNE - enough said. They have no credibility in my view.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
| IP: Logged |
Your state is the outlier, certainly. In many (I would say most) states NDs are not able to write prescriptions for allopathic pharmaceuticals, nor are given DEA numbers. There are only 15 states currently (according to the Wiki -http://en.wikipedia.org/wiki/Naturopathic_medicine) that "protect" ND as a title limited to individuals who have completed a certified program. Even fewer allow access to prescription medication. I'm sure that all those who pass through these accredited programs are worthy of becoming physicians, but in the unregulated areas there are many that ruin the name of the qualified NDs who are "on par" with MDs.
Also, I am speaking pragmatically as a member of the medical community - Since NDs are unregulated and un-certified in so many states and lets face it, there are many unqualified "alternative" practitioners making use of the title, it would make it harder for James to get his personal experiments public, if those overseeing them had questionable credentials. I'm not saying it is fair necessarily, or that James' specialist is unqualified, but unorthodox treatments are so easily dismissed as it is, and lots of good data will be lost on the general medical community if it isn't presented properly, "Getting all your ducks in a row", one could say.
Posts: 690 | From East coast, USA | Registered: Jun 2006
| IP: Logged |
jamescase20
Unregistered
posted
The only thing controversal about live blood microscopy is that one can only see invaders, you cannot for 100 percent sure be sure what the invaders are.
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
james, you are in good company. most of us have been castigated over there at least once or twice. please pay them no mind. they seem to think they're still in their junior high school cafeterias. it's sad, really.
and in terms of lorenzo of 'lorenzo's oil,' yes, he passed away recently, but because of his family's tenacity he lived years and years longer than he was ever expected to.
lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
Blackstone -- Some very good points about how to establish and why it is important to establish credibility. This is only important if we care about involving the orthodoxy.
I feel there is another avenue, one shared by Pam Weintraub when I asked about research and clinical trials, I can't quote her directly but my understanding is for all lymies to organize and do our own research. I think James is taking the first steps to getting us there.
I just saw my Doctor today and he uses ART to assess lyme levels. I have very little lyme left, his quote infintesimal. I tried Amazon C-F for the first 6 months of 9 months of treatment. It was my major lyme deterent besides MMS. I've been using MMS now for about 7 months. I believe it would have worked a lot faster with monolaurin, garlic and a good transfer factor.
To give you a relative view of my state of health. I played tennis these past two weekends 3 hours each day. I'm a lot better but not quite symptom free.
In my mind the best way to do a clinical study based on people who have to be monitored for over 6 months. I say we do it ourselves working with practitioners. We need to organize these efforts. This would also provide practioners information to help them as well.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
| IP: Logged |
sometimesdilly
Frequent Contributor (1K+ posts)
Member # 9982
posted
pretty please, no naming and bashing of individual LNE members here.
for myself, i haven't commented here one way or another, James, about the merit of what you are doing.
i replied to say- personal attacks are needless and hurtful. doesn;'t matter whether they are over there or here- both are avoidable.
hugs, dilly
Posts: 2507 | From lost in the maze | Registered: Aug 2006
| IP: Logged |
posted
I don't know anything about LymeNet Europe, nor do I care. What I do care about is checking this site every day for your updates. Please do not stop as the rest of us are desperately looking for answers and anxiously awaiting your findings. There's got to be a way to beat this and it's only going to happen through people like you who are determined and willing to take risks.
Posts: 144 | From Connecticut | Registered: Sep 2006
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Bob (Lymie in MD) why did you do Amazon C-F rather than Spiro? I've heard Spiro is good and possibly considering it tho I'm not fond of mixtures as I may not tolerate one herb among a group.
Did you ever do abx?
Do you feel the MMS helped more than the Amazon C-F?
James, keep up the good work.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
lymielauren28
Frequent Contributor (1K+ posts)
Member # 13742
posted
I'm reminded of Doug - the inventor of the coil rife machine. He and his family were horribly ill from Lyme disease. He actually wrote out a last will and testament because he thought he was dying.
But you know what else he did? He used his brain and realized that currents and frequencies could kill viruses and bacteria. Since he had a background in engineering, he realized that he could probably build a machine that could send these frequencies through the human body.
Sounds like a longshot right? But he did it anyways. He built a machine and then went out and got a microscope and a friend in a lab was able to get a petri dish of Lyme spirochetes. They veiwed the spirochetes through the microscope and ran the machine. It killed them. Shattered them actually.
While testing the machine on the 'chetes in the petri dish, he inadvertantly "treated" himself and experienced a massive herxheimer. That's when he knew that it worked. He went on to treat and cure his Lyme disease and his family's as well with his machine.
That's amazing! Innovative! I'm sure there were people that thought he was out of his ever loving mind, and had he listened to the naysayers, we wouldn't have rife machines today...and many people, including myself use them, and with success too.
Keep truckin James, I think you're on to something
Lauren
-------------------- "The only way out is through" Posts: 1434 | From mississippi | Registered: Nov 2007
| IP: Logged |
mojo
Frequent Contributor (1K+ posts)
Member # 9309
posted
I used to go there - there are (although it's been a long time since I've been there)some nice folks there but I noticed anything beyond antibiotic treatment is not well tolerated.
A few months ago I saw a post that said "if a Lyme doctor believes in Rifing are they considered an LLMD?" and they weren't being mean or sarcastic - it was a serious question.
I spoke of my parastite cleansing and it was suggested (in a very polite way I have to say) that maybe there was a reason that I had parasites and they may actually be good for me.
I just quit going because I like to learn about as many alternative treatments as possible. I've learned to "never say never" with Lyme.
Posts: 1761 | From USA | Registered: May 2006
| IP: Logged |
lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
o2babe -- My doctor prescribed Amazon c-f. When he tested me with ART he tested me for ABX, I didn't test well for it, so he tested for an alternative Amazon c-f.
Yes I did try ABX over a year before seeing this doctor, at that time I wasn't sure what I had. I had minor symptoms and I was prescribed ABX, amoxycillin. I felt better initially from 7 day course, but 4 days after finishing that course I got a lot sicker. Went back to the doctor and got a 14 day course of another ABX. Same thing, after finishing the course of ABX, felt better for 4 days and then got really sick. 10 days later went to the emergency room and my wife suggested I might have lyme to the Physician, so he prescribed a tetra-cycline for 30 days. I got better for the first 2 weeks but this time even before I finished the course, I really got sick, almost deathly sick.
I believe I was very susceptible to yeast.
I thought I had sooo many other things and it took a little over a year when I met Dr. B. and he said you have lyme, mercury, lead and yeast. His testing also showed I was very sensitive to ABX, he recently tested me again for doxy for something else and decided on an alternative.
I started MMS and had it tested. My doctor was impressed in how well I tested for it. This was around february.
Today I was tested with almost a non-existent level for lyme. So, I'm in the process of repairing any remaining damage.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Sounds like you have a good doctor, Bob. You never ran a Western Blot, even an Igenex? Just curious.
Whatever you have/had, glad you're playing tennis and feeling well.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
o2babe -- It just seemed to me if you have symptoms enough, why spend a lot of money on expensive tests. Just start treating, diet, supplements, chellation, dental doing your own research.
I had all the clinical symptoms of lyme and doctor who energetically tested me for lyme. As well as an EDS done by a very good practioner who found lyme. It is enough for me. I trust the energetic testing for lyme by practioners, who I consider excellent, to be more effective then blood tests. Just my opinion.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
| IP: Logged |
luvs2ride
Frequent Contributor (1K+ posts)
Member # 8090
posted
Hi Bob,
I am one who really prefers testing. If you were just trying over and over again to get that elusive positive lyme test, I would agree. Don't waste your money.
But since clinical symptoms of many different sources overlap each other and the treatment for each source can be radically different, I think it is important to identify your source as much as possible.
For instance, lyme and yeast share many symptoms but abx for lyme actually encourages yeast, so the treatments are different.
My test results show many bacteria and parasites in addition to lyme and my doctor is dealing with each.
I'm happy to have the name of an enemy and a target to go after.
Luvs
Luckily, insurance has paid for most of my testing.
-------------------- When the Power of Love overcomes the Love of Power, there will be Peace. Posts: 3038 | From america | Registered: Oct 2005
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Bob, the real reason is that you may not have had lyme, and so your improvement on Raintree herbs and other modalities may be to a much less intransingent, virulent bacteria. Energetic testing, I think is valuable as a backup, but suppose you had some other viral infection or some other chronic infection, like chronic strep or something, and a candida infection on top of that because of abx. Then your situation wouldn't apply to those who have a more virulent, tested strain of lyme, and babesia and so on.
So though I am very glad you are feeling better, I have to rule out that you had lyme. Also, a number of lyme strains are mild and/or don't disseminate to the nervous system, making them easier to treat.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I find it insulting to suggest that someone may not have had Lyme simply because they relied on energetic testing. Would you say the same to someone in a wheelchair sick with Lyme that their doctor clinically diagnosed?
I just find it illogical to suggest that because someone is getting well that they may not have had Lyme to begin with.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
| IP: Logged |
lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
o2babe -- my doctor is certain i have lyme. the amazon c-f herbs did work, not nearly as effectively as the mms again based on energetic testing. and yes there are complications with candida, strep (more specifically in my case streptocaucus aureus), he found mycoplasma, giarda, herpes symplex, and campylobacter. Not to mention, I was completely mercury / lead toxic in my years of having 50 amalgams in and out of my mouth. I now have "0".
o2babe if you want to trust blood tests over energetic testing. it is your choice, and i can understand why you wouldn't trust energetic testing -- it is really about the practioner and the practioners skill.
Speaking of skills, based on symptoms not blood work. How many folks have lyme or a coinfections based on symptoms and the skills of an llmd of which my doctor is an llmd and not blood work?
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
I did not mean to insult you in any way. It doesn't mean you weren't feeling very sick. It just means that because someone muscle tested you and concluded you have lyme, I don't necessarily believe it. I can't afford to believe it, actually.
Igenex tests are very reliable and usually don't miss these things.
It is hard to know what to say about subjective reports of energetic testing. For instance, we haven't heard from Clancy again, but though Dr. W "energetically tested" her husband to be free from lyme, he still had all his symptoms. Clearly he still had lyme.
Without a bullseye rash, history of known tickbites in endemic areas, or an Igenex test for lyme and babesia, I can't feel confident a person had/has lyme just because they were sick. Viruses can cause bad symptoms, so can chronic strep and staph for instance. This is not to minimize that you were suffering, nor to minimize that you are feeling well now, it is just to say that because a doctor claimed via muscle testing you had lyme and that now you don't, I can't trust that.
That is my honest assessment not meant to be an insult. I would hope you would understand why!
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Sounds a lot like comments from someone that has not experienced ART themselves....
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
| IP: Logged |
lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
o2babe -- you didn't insult me at all. I perfectly understand why you might find someone who hadn't tested with igenex in your mind isn't conclusive for lyme. But I believe none of the blood tests are conclusive for lyme if negative including igenex, in my opinion. Granted igenex is the way to go for a blood test to prove lyme, if you want to go that route.
I think Scott is absolutely correct. You have to experience ART over time with a good practioner to understand its value.
If your opinion is ART as an energetic testing has no value. It is your opinion. 8 or 9 months ago, It was getting to the point I could barely walk, was considering disability. Had crawling sensation in my legs and arms. Constant flu like symptoms. I had many other neurological symptoms as well. It didn't seem to be just mercury or viruses or strep to cause severe symptoms of this kind.
The practioner stated I had lyme, it isn't what I think that is important. If you can see some of transformations I've made in 9 months. You might just give him the credit he deserves and respect his assessment. I know this is contrary to what you believe, and you know, that's ok. I'm just stating what I've experienced believe it or not. It's not my issue.
If you would like to talk to me directly feel free to PM me, I'll send you my info. I really do appreciate your posts and find them very respectful.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
| IP: Logged |
jamescase20
Unregistered
posted
Yes, I can understand why someone would question lyme without a conv test like the WB.
Thats why I had one done (WB) even though I knew I had lyme via the live blood.
But I did the blot, and sure enough, it was pos.
IP: Logged |
posted
I dont understand... I feel like people contradict themselves a lot...
Everyone says Lyme is a CLINICAL dx and Labs mean nothing,... and than all of a sudden you all say NO You NEED to get the WB to PROVE lyme..
SO what is it... IS it a CLINICALl DX or a LAB DX
So pretty much what you are saying is that if a person has a negative WB, they DO not have lyme disease...
I think that goes against a lot of what ILADS says.
So if a LLMD clinically dx'd Bob with Lyme, he doesnt have it because he didnt get a WB?? Thats like him getting a negative WB and being told he doesnt have lyme.
I really think you need to read what you wrote.. You also said. If you have never had a bullseye.... Ummm HOW many people NEVER get a bulls eye.. You are really contradicting everything that LLMD's say and ILADS says...
This is why it is so confusing... So I guess my thoughts about not having lyme are exactly correct... I didnt have a Bulls Eye, I dont remember a tick, and I only had a positive IgG and not CDC positive...
Well there you have it! Lyme is a LAB diagnosed illness
-------------------- "You'll be surprised to know how far you can go from the point you thought it was the end" Posts: 946 | From Massachusetts | Registered: Apr 2008
| IP: Logged |
lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
Shandy -- I agree it is confusing, it is really a very confusing disease. I just remember Dr. Alan MacDonald got 10 alzheimer brain tissue samples and 70% of them had lyme. I bet none of them thought they had lyme. My point, if you have symptoms and they prolong more then a year, good indication you have lyme, why worry about tests, fight the disease as if you have it. Because when you fight lyme, you fight everything else anyways. IMO, I believe James and I certainly don't respect the opinions of LNE.
Jeanne -- ART is an advanced form of muscle testing, you have a substance like mercury in a vial and the practioner tests your muscle reaction. It is dependent on how good the practioner is, who maybe doing this for 1000s of patients over time. It becomes a technique. EDS is different, it is a biofeedback device, it sends a signal through your body and extrapolates based on the signal returned what is going on in the body. It is very similar to an EKG only far more advanced. Again this device is interpretive and is highly dependent on the skills of the practioner.
All energetic testing is based on the skills of the practioner. It is matter of reading a complicated document, some will get the points in it, some won't. Reminds you of a primary care physician, some are good some are not so good.
I got lucky and had two good practioners.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
The problem with testing is the conventional testing. For instance, there is a young woman at my holistic doc's who is sooooooooo sick. She walks with a cane. She's in constant pain. She looks glazed over. She has a husband, 3 kids.
She has two positive bands on a western blot.
Her insurance says that is not a positive as it needs to be 5 bands. That's because of the idiot CDC.
Moreover, she lives in front of a sod farm and when they pull up the sod tons of ticks come out. She has pulled ticks off her dog. Her little girl got a tickbite this year with a 104 degree fever.
So, in such a case, you look at 2 bands, exposure to ticks, and you know you have a lyme case. But she can't get IV rocephin because of the CDC. etc.
That's why we say it's a clinical diagnosis. What else is left to us?
Igenex is very reliable, imo.
Unexpected, you mis-read what I wrote. I never said, "If you never had a bullseye." I wrote a list of indications for lyme disease, that I would rely on. A bullseye is diagnostic without any other indicator.
Also, an ART practitioner who suggests amazon herbs and MMS may be a good doctor but he is not an LLMD, imo.
I don't want to get into an argument here and I may be headed that way. If so, I'm going to bow out.
As for Scott, you've been on everything mainstream and alternative I can think of in the last few years. I don't know how you're doing actually. I don't know how to evaluate your situation because you try so many things at once.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
oxygenbabe said:
quote: Igenex tests are very reliable and usually don't miss these things.
You are confusing me here. You make the statement more than once that Igenex tests are very reliable.
Then you say if someone has two positive bands they have Lyme, even though that would be labeled a negative WB blot by Igenex.
I have never had more than two positive bands on a WB from Igenex, but have the clinical dx of Lyme.
I've also traced my symptoms back over 40 years, and I do know I had quit making antibodies by my early 20's.
IMO a negative Igenex WB does not rule out Lyme, which is why there are clinical dx's. However a positive Igenex WB definitely indicates Lyme.
BTW, James, keep up the hard work. We just worry about you sometimes because we don't want you to overdo it. It takes a lot of courage to do what you are doing.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
| IP: Logged |
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
no, lyme IS a clinical diagnosis. there are lab markers that can help indicate lyme, but even if one tests negative one can be actively infected and diagnosed clinically by an LLMD.
heiwalove
Frequent Contributor (1K+ posts)
Member # 6467
posted
ps. i have found ART to be extremely reliable but it takes an open mind and a skilled practitioner and i realize not everyone has access to both.
posted
James, a constructive comment (hopefully)? How about creating a website of your findings -- photos and all? That would be cool...
-------------------- 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
| IP: Logged |
jamescase20
Unregistered
posted
A website costs money, which I dont have at the moment.
IP: Logged |
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
OB - I am not working on my own health for purposes of others to evaluate it.
Everyone knows that Lyme is difficult. In my opinion, integrating conventional and alternative options is the most logical way to approach the disease.
I think you will find more and more treating docs that used to use ABX alone are also starting to change their views in this area and focusing more on detox, herbs, etc. Antibiotics are not the solution; though they may be a part of it.
I happily share my journey with others in hopes that they benefit from it but I am not looking for evaluation or validation from others (though I do appreciate feedback and learning from others) that my journey is the correct one for me. It may not be the correct one for others and then again it may well be.
As for ART, I'd happily toss every last conventional test into the garbage vs. losing the benefits I have gotten from the information revealed by ART.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
To clarify again, two bands is a positive, but not by the CDC. However an LLMD knows that is a positive. The CDC is dishonest.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Actually, 2 bands on IgM IS positive even by CDC criteria.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
| IP: Logged |
lymie_in_md
Frequent Contributor (1K+ posts)
Member # 14197
posted
This has been very constructive as far as getting to new points of view. I really appreciate lymenet. It continues to help progressively get us closer to the issues concerning our health. What I really appreciate most is the civility of our debates.
Hopefully LNE takes note, and somehow appreciates other points view in a civilized manner. As far as I'm concerned only a barbarian would use the bashing hammer on a fellow lymie.
I think james has given us a new weapon. The combination of monolaurin or lauricidan with MMS. I thank him for his efforts and we should all celebrate.
-------------------- Bob Posts: 2150 | From Maryland | Registered: Dec 2007
| IP: Logged |
posted
James, there are many ways to get a free web site; blogs, web sites and more. I wish I could help you now, but I am swamped. Others that can help James, pls PM him...
-------------------- 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
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
Yes I agree James' experiments are very interesting.
Scott--the webpage you cited states:
"There are currently multiple criteria that support a positive blot. "Positive" means that certain antibodies to B. burgdorferi are present. The CDC/ASTPHLD criteria are very conservative, require 5 of 10 bands (antibodies) for a positive result, and do not recognize equivocal or borderline results."
The CDC requires 5 bands. This has been true for a long time. This allows insurance companies to refuse to pay in many cases. That is what this poor woman is going thru and she's only in her early 30's and is really sick. I'm not sure what's going to happen to her. From my perspective she seems to be getting worse each time I see her.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
posted
Hey James how about shutting up those guys and posting the pictures day by day showing clearly all the keets and proving that MMS work? that would be awesome.
Posts: 13 | From U.S of A | Registered: May 2008
| IP: Logged |
SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
CDC requires 5 bands for IgG. They require 2 bands for IgM.
From the page I originally posted:
The CDC/ASTPHLD criteria for a positive result are two of the following three bands: 23-25 kDa (Osp C); 39 kDa; and/or 41 kDa
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
| IP: Logged |
oxygenbabe
Frequent Contributor (1K+ posts)
Member # 5831
posted
So what is your point, Scott? She does not have 5 positive IgG. She's been sick a while.
How does a person get 4 positive IgG and that's not enough evidence they have lyme? Its completely arbitrary and basically criminal imo.
And this is off topic of my point which is that if someone gets muscle tested and told they have lyme, and then muscle tested and told they no longer have lyme, that's not evidence enough for *me* especially on a message board. This is not against Bob and he understands where I'm coming from.
Posts: 2276 | From united states | Registered: Jun 2004
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Big Grin]](biggrin.gif)
![[loco]](graemlins/loco.gif)
![[kiss]](graemlins/kissing.gif)
![[lol]](graemlins/lol.gif)
![[Wink]](wink.gif)
![[Razz]](tongue.gif)
![[Eek!]](eek.gif)
![[group hug]](graemlins/grouphug.gif)
![[bonk]](graemlins/bonk.gif)
Printer-friendly view of this topic