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» LymeNet Flash » Questions and Discussion » Medical Questions » This site needs some help and needs cleaning up.

   
Author Topic: This site needs some help and needs cleaning up.
prconn
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There is more information here that has nothing to do with Lyme than I can believe.

People come here to share their stories and experiences with lyme.

On more than one occasion my Lumbar punctures have been called into question. Read Dr.B's guidelines or Dr. H's book. Both discuss elevated protein levels without elevated glucose as a hallmark of Lyme.

The pain I endure from Lyme is ten-fold as compared to the numbed pressure I feel during the LP. I have had 7 and can't wait for the 8th. It is a great in relieving the pressure in my cranium.

I have a background in medicine and at one time could read and digest it all. Sadly it is not the case anymore. I was also grateful not to be the patient. I often thought they were screwed. Having Lyme has really proven my thoughts to be well proven.I am screwed.

I feel for those who have no experience in medicine. Being able to better understand the right questions to be asking. They get some of their information here. Then go to their medical professionals asking absurd questions that only leaves them looking like complete idiots and undermines us all as a group.

A recent post about the Pineal gland is a perfect example. The hostility shown to someone who questioned the threads validity was uncalled for.
From where I am sitting the entire thread has little to do with LYME!!!! This is a Lyme support website isn't it?

When I was finally diagnosed with Lyme 12 years the information here was truly helpful.

Thinking of it maybe times have not changed.

Back then there were topics regarding the US government creating Lyme for bio-warfare.

Fleas, lice and ticks have been disease carriers since the beginning of time. Indians were well aware of this and it is believed that an entire colony in Roanoke was wiped out by Lyme in colonial times.

So shelve your conspiracies and let's get down to nuts and bolts of LLMD based information.If it is not fact based it needs to be removed.

It is my opinion that information given and shared here should have something to do with Lyme symptoms, diagnosing, treatment protocols and support the newbees digest all the information that is coming their way.

I understand that people are just trying to help but they are really confusing sick people with nonsensical gobble-d-gook.

We are suppose to be supporting each other regarding Lyme. Moving forward it would be nice to use the KISS method. Keep it Simple Stupid.

The pie in the sky stuff just serves to confuse the already confused.

God Bless and Mercy to all of you suffering with Lyme.

Paul

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Robin123
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As I understand it, Lyme affects everything in the body, pineal gland included. So I think the discussion is relevant.

And it's true, we are not doctors here and people can always be asking their doctors for info as well.

I hear you on wanting facts, but I don't think we have all the facts at this point in time. I think new information is still being discovered, for example, what Dr Alan MacDonald is discovering re the beta amyloid plaques in the brain, etc.

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poppy
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I do wonder sometimes if new people can winnow out some useful information from all the posts--quite a few with obscure things to take and try. How do they figure out what is basic, instead of what another poor patient is doing in sometimes vain hopes of breaking the stalemate. Maybe more steering them towards the stickies and Dr. B's piece.
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lpkayak
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Well the stickies are there...i would think newbies would start therr

--------------------
Lyme? Its complicated. Educate yourself.

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Lymetoo
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We can't control everything here. People need to use discernment.

We have an entire thread of important information that even our long time members do not know about. This thread should be "required reading":

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=088555;p=0

Please help spread the word to newbies!

Dr B's guidelines:

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=109735;p=0

--------------------
--Lymetutu--
Opinions, not medical advice!

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prconn
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Relevant in the sense that as described that the pituitary/hypothalmus axis is effected by Lyme. It would stand to reason that yes it does effect the pineal gland as well.

However power lines and cellphones adds nothing to diagnosis or treatment of lyme.

Because of my Lyme brain, I tend to go down rabbit holes looking for useful information to help me understand my continuing demise.

So I intently read it all. I get frustrated when the information leads to a product to buy or useless information that has nothing to really do with lyme.

I know science based studies continue with the recent information on Stevia and the opening of what seems to be an open minded rehab program at Spaulding Rehab in Boston. I am in the process of kicking those tires now. There are a lot lyme wolves in sheep clothing. I am sure there are many more programs and studies being done I am unaware of. My fingers are crossed.

I think we need to be looking at civil disobedience like the gay community used in "act up" campaign to bring attention and funding to HIV.

We have been a very polite group with our state house protests and sidewalk campaigns. I think it is time that we need to step into the streets and lay down. We can use lyme green paint instead of "act ups" red. Water based of course. have our bodies outlines painted in the streets. So as pedestrians and drivers past where we were will not be forgotten.

I am 50 now and feel myself slowly declining and don't want to regret not speaking up!!!! quietly of course as I get headaches from loud noise and too much visual stimulation.I would also get a headache if I even tried to yell.

Mercy for you all

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susank
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PRC - I think you make some valid points.

So tired - that is all I can manage to type.

--------------------
Pos.Bb culture 2012
Labcorp - no bands ever
Igenex - Neg. 4 times
With overall bands:
IGM 18,28,41,66 IND: 23-25,34,39
IGG 41,58 IND: 39
Bart H IGG 40

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lymeboy
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Yea, you make valid points. The other side of it is that this is a long ignored and misunderstood disease. Not only are people chasing good doctors, but also sharing what works for them, however unconventional. There are some here who've cured themselves with a combination of crazy therapies that are not accepted by the medical community.
As for getting crazy, hell yea, let's do this. Let's get weird. I may be sick, but I would take to the streets if I thought it would lead to a cure. you're right prconn. We have been wayyyy too nice about this. We've been trampled on. Why aren't we pissed? This is a terrible way to live and we're being crapped on and bankrupted. Many of us will die early with a tattered family due to disease induced mental illness. Let's fix this, because, who else will?

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Brussels
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Paul, sorry if I bother you with my posts...

I no longer have lyme, but am in the AFTER lyme treatment, or mostly, how NOT to get so ill again with it or other infectious CHRONIC diseases.

I initially went to doctors, university hospitals, and specialists to get treated by lyme. You name it! But they found no lyme, so I got no treatment. 17 doctors and specialists.

Fortunately, a 'crazy' woman from lymenet posted her experiences with an ALTERNATIVE treatment, done by a PHYSICIAN, dr. K, who healed her chronic lyme.

This particularly physician does not think the CENTRAL problem of lyme is THE BACTERIA.

If you have been treating ONLY THE BACTERIA for long enough as many people here have been (that means YEARS), you will see the problem is much more complex.

Dr. K, anyway, says HORMONAL PROBLEMS are on the TOP of list of lyme treatment. Not a side list, but top.

No single chronic lyme patient ESCAPES from hormonal problems, according to his 3 decade experience with LYME patients.

------------------
What Burrascano said 12 years ago is not what he is saying TODAY. I've been long enough here to see.

He didn't include any heavy metal chelator at first. NO ONE was talking about BIOFILMS before dr. K. No one!! No lyme specialist.

No one was talking about PARASITES. Not Burrascano. Now he IS TALKING about it (like lyme patients on the West coast seem to have parasites).

Few lyme specialists are talking about electrosmog. Wait a couple of years. Dr. K. is a pioneer in many senses, believe you or not. Just watch development of history of lyme treatment.

Just follow exactly what Burrascano writes, how his protocols and suggestions change with the years.

Anyway, Burrascano is talking about hormonal imbalances too.

Ignore alternatives (like Rife or frequency treatment) like ALMOST ALL MEDICAL DOCTORS, and you may get stuck with lyme forever!


I got healed through his therapies and dr. W's therapy. I got hormonal treatment since start of my lyme treatment, plus allergy free diet, microcurrent with Rife frequencies, homeopathy, dozens of herbs in combinations, cavitation treatment, heavy metal chelation...

Which MEDICAL INSTITUTION would have provided me this treatment???

I wish there were more physicians getting us out of the mess.

but I agree with you, it's too much information for newbies.

I find though that the HARDEST part is not the newbie part, but AFTER, when you are still not 100 % well, what to do?

The MAIN PART of the puzzle comes later in treatment, when you are almost well, but not totally, and after trying dozens or hundreds of substances, treatments, you are stuck.

With whatever treatment you choose, if you do consistently, you'll probably get improvements.

---------------------------------
dr. K's words:
the illness producing effect of microbial exo- and endotoxins and toxins produced by the host in response to microbial trigger

Most of these are neurotoxins.Some appear to be carcinogenic as well; others block the T3 receptor on the cell wall, etc. Decreased hormonal output of the gonads and adrenals is a commonly observed toxin mediated problem in Lyme patients.

Central inhibition of the pineal gland, hypothalamus and pituitary gland is almost always an issue that has to be resolved somewhat independently from treating the infection.

Furthermore, biotoxins from the infectious agents have a synergistic effect with heavy metals, xenobiotics and thioethers from cavitations and NICO lesions in the jaw and from root filled teeth.

-------------

Anyway, it was dr. K's treatment that gave my life back, I believe. I did almost everything he suggests, including cavitation sugeries.

Cavitations, I believe TODAY, is big in chronic infections.

Even if this all is puzzling, so is lyme disease.

But I guess I shouldn't post too much about it... It makes lyme even more confusing..?

[ 12-05-2015, 11:36 AM: Message edited by: Brussels ]

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Catgirl
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quote:
Originally posted by prconn:

However power lines and cellphones adds nothing to diagnosis or treatment of lyme.


I respectfully disagree. EMFs break the immune system down. They also aggravate the bugs and make mold grow. If you want facts, feel free to research.

I value everyone's experiences and opinions on this site, and I am thankful Lymenet allows everything, not just what some may disagree with.

--------------------
--Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together).

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prconn
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Brussles, I apologize for dragging you into this. Your post is one of many that I was speaking of. Yours just happened to be the one that got me off my butt to say something.

You have often provided many valuable insights and I don't want to take away from continued to efforts in helping us all to get well.

As I stated before my background is in medicine. I worked for the company that invented the angioplasty balloon and stent. Plaques and bio films are an issue in our arteries, mouths and our entire bodies. As bypasses and stent placements continue to this day. The problem of plaques and bio-films has yet to be solved. Hopefully one day soon it will be.

Maybe it is that it was not a " Medical Question" and more of a statement. It may be applicable to be posted in "General Support".


Some information here is total junk science and prays on the sick and vulnerable. This information is then disseminated to others including medical professionals which only serves to undermine our sanity. Which many of us are barely hanging onto to begin with.

Like many others I was told my problems were all psychological for 8 years before being diagnosed.The last thing we need to be doing is expressing this information to the clinicians that already cower and repel when they here"Lyme". These folks are scientist and operate in a fact based world. They have no interest theory or conjecture.

I have learned a lot about Lyme in the last 8 months after the dental work that got this all kicked up again. So don't ever assume you are in the clear and not chronic.

Dentist are seeing what they believe to potentially be Lyme Spirochetes under Microscopes. The normal oral ketes are white look like worms and octopus. They are seeing larger Black worm-like ketes.

Their concern is that if Lyme ketes can survive in mucus mucosa they will never be penetrated by the antibiotics. Thus we just reinfect ourselves though our mouths once treatment has been stopped. Thus deep cleanings are suggested during treatment for Lyme. I had mine Thursday.


Lymetoo has always been the most sincere loving person on site. You my friend have been a positive, informative and uplifting force for all.

So maybe my issue is that it was not a "medical question" that troubled me.

Again Mercy to all that suffer with Lyme.

God Bless,

Paul

[ 12-06-2015, 01:43 PM: Message edited by: Lymetoo ]

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hiker53
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prconn--You said you got a flare up due to dental issues. Well, a number of years ago talking about dental issue and relating them to Lyme would have been considered crazy talk. But not anymore.

Let's all understand that we all different symptoms, and are in different places with our healing.

Thus what is applicable to one person may seems like nonsense to another.

For me, the infrared red treatment and energy healing have really helped and antibiotics did not help all. May sound crazy to some, but not to me.

Paul--I wish you the best in your journey to wellness. I pray you get there soon!

Blessings.

Hiker

--------------------
Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

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prconn
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Catgirl,

I understand that powerlines,cell phones, landlines and wi-fi emit electrical waves. We are electrical beings and emit our own waves. Research has proven it all to be true and fact based.

I just don't understand what your position is. We live in a world that is polluted by things that are much more dangerous and savage than electrical waves.

Let's bring this back to finding a cure and help for people with LYME! Lyme and other diseases have been around since the beginning of time and human existence.

Every aspect of being diagnosed,treated and hopefully finding a cure for Lyme need electricity,landlines,cell phones,computers and wi-fi. Without these tools we will never find a cure.

Thus I am still confused how this is related specifically to Lyme. These same conditions exist for every human disease and are not just specific to Lyme.

Just seems like a dog chasing it's tail.

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prconn
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As just brought to our attention by hiker. Infra red is helpful and is a medically proven modality.

Without the power lines infra red would be useless.

You can't have it both ways.

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prconn
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To Susan K. my heart aches for your suffering and struggle to understand complex issues. I am in the same boat as you right now it would seem. So a fist bump to you.


I won't quit if you don't. We will beat this and there are plenty of people here that feel the same way.So never give up.

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Carol in PA
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As for all of the strange and non-evidence based methods we discuss, you may want to look into trying some of them.

I have used a number of them to help myself feel better.

[ 12-06-2015, 01:45 PM: Message edited by: Lymetoo ]

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TerryK
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prconn- You've been around since 2005 so you've no doubt seen the exact same complaints that you bring up many times before.

The owners of this site have made it clear over and over that this site is set up and administered the way they have decided it should be. Many of us are happy with it.

Some of those who wish to set their own rules have started their own forums. I don't know if any are still around but you might be able to find one with google.

Wishing you well.

TC
So sorry to hear of your situation. You have been a long time supporter of the lyme community and I have very much appreciated your kind voice over the years. May your load be lightened and some happiness come your way.

Terry

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Tincup
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PRConn- I posted above to try to bring some smiles into your life and to try to get you to look at the situation in a better light. I obviously failed. It happens sometimes.

I posted again to sincerely apologize for my mistake and looks like that failed miserably too.

You can certainly keep kicking me if you please, but what won't fly is attacking my mother and father again. My parents were amazing. Absolutely amazing. You never knew them or anything about them, so it is shocking to me that you'd attack them. Totally not cool.

My parents taught me to be happy, independent, giving and strong and I loved them both dearly. I was not taught to whine and feel sorry for myself, or to "cry" for what I've lost. If that is your way to handle this as you mentioned above, that's fine. But do not go after my parents again.

I'll remove my posts above so/until you can calm down.

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Tincup
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Carol in PA, and TerryK. That rhymes! HA!

Thank you for your kind words. It means a lot. Really it does. We'll chat later, elsewhere!

--------------------
www.TreatTheBite.com
www.DrJonesKids.org
www.MarylandLyme.org
www.LymeDoc.org

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Brussels
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I understand Paul somehow, as I've been there too!

Lyme = infectious disease, immune disease.

Why do we need to discuss other things than infection?

Burrascano also didn't talk about psychological issues (now he is mentioning it as part of treatment).

He also didn't say anything about heavy metal chelation. Now he does.

He was not talking about biofilms. Now everyone is.

Is he talking about cavitations? I don't know, but he should, in my non-medical opinion!

He also didn't say anything about parasites. Now he does.

He is probably not looking into electrosmog. Well, wait and see.

He's still not talking about chemtrails? Wait and see.

With or without medical background, people who want to heal need to look OUT OF THE BOX.

The only reason why some are still stuck after YEARS or DECADES of treatment is not because they haven't tried MEDICAL options.

If you just read success stories you will see that if you remain on chemical treatment of bacteria ONLY, you'll probably go on treating forever.

You don't believe in electrosmog causing symptoms. I agree with you, I didn't either.

I didn't believe my dead teeth were making me ill. I didn't believe 'energy fancy tests' would take me anywhere.

I didn't believe magic infrared photons would transport the message of homeopathic products (which are seen as quack by almost everyone).

I didn't believe initially in acupuncture points, meridians, chakras, nothing. Aura? No way.

My brain refused to believe most of those stuff, until I fell ill with lyme and almost lost my life. Had I obeyed my brain, i would not be here telling you my story.

My daughter would be still ill BECAUSE OF PEOPLE WITH MEDICAL BACKGROUND not wanting to treat her or treating her ONLY WITH antibiotics.

Medical doctors ignore chronic lyme, 99,99% of times. We don't even exist for them. It's not medical background that is a warranty for getting good info and healing.

I'm so sorry we have to go through this type of discussion, sometimes. If other medical sciences had been ALLOWED to develop parallel to our mainstream medicine, many would be probably healed, our insurances covering alternative medical treatment.

Microwave, low intensity has biological effects in the cells. There are MEDICAL papers on that. The industry will always prove it different, though.

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poppy
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If new people get bogged down in all this, they will drown. It is just too much. I am not new but have decided it would take several life times and a lot more money than I have to chase down all these rabbits. The danger with a forum like this is that some people don't understand that what worked for them may not work for others, and they push too hard.

How many times have we heard people admit how much money they have spent on all this alternative stuff, and been no better and a lot poorer? If trying all this stuff worked, Yolanda would be cured. Please don't mistake a personal improvement with the answer for everyone. There are several people who are the main offenders. They need to cool it.

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me
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This site and the people on it have helped me a great deal. I owe a lot of the progress I've made to wonderful people who have volunteered their time and efforts to help educate me and help me in many ways. Thank you to all of have helped me and I appreciate this site.
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Phoiph
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"The danger with a forum like this is that some people don't understand that what worked for them may not work for others, and they push too hard."

My opinion is that the people who have become well need to become MORE outspoken, not less, about how they have done it...

We more often hear from chronically, severely ill people who vehemently defend their long-standing, traditional methods of treatment...who may or may not be particularly tolerant of others trying to get the word out on what worked for them.

If those long standing, traditional treatments worked so well for the hundreds of thousands of people using them, we would not need this forum at all, would we?


"It is through science that we prove, but through intuition that we discover." - H. Poincare

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ukcarry
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Good point, Phoiph. People can get a good idea of the topic of a thread from the subject headings and they are free to look at a particular thread or ignore it.

If there was an easy answer to this condition, then we wouldn't need to be discussing a whole range of different options. But we haven't all got exactly the same illness combination just because we all have borreliosis of one strain or another in common. For this reason, I enjoy the diversity of topics.

For those of us with longstanding illness who did not improve with antibiotics, reading about other people's experiences of treatments and discussing them can be invaluable. I have very rarely seen on this site threads where individuals are trying to force things on others and I believe that newbies have more discernment than some people give them credit for!

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Lymetoo
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Please be polite to each other and consider the shoes that each of us walks in each day.

Some posts were edited, others deleted.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Brussels
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http://www.who.int/peh-emf/publications/en/EMF_Risk_Chpt1.pdf?ua=1

WHO publishes about carcinogenic dangers for children when exposed to:


LOW FREQUENCY RADIATION:
Many health outcomes ranging from reproductive defects to cardiovascular and neurodegenerative diseases have been
examined, but the most consistent evidence to
date concerns childhood leukemia.


In 2001, an expert scientific working group of WHO’s International Agency for Research on Cancer
(IARC) reviewed studies related to the
carcinogenicity of static and extremely low
frequency (ELF) electric and magnetic fields.


Using the standard IARC classification that weighs
human, animal and laboratory evidence, ELF
magnetic fields were classified as possibly
carcinogenic to humans based on epidemiological
studies of childhood leukaemia.

---
Given the widespread use of technology, the
degree of scientific uncertainty, and the levels
of public apprehension, rigorous scientific
studies and clear communication with the
public are needed.

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Brussels
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Scientists from Columbia University are much more clear about dangers.

Cell phone radiation is dangerous to our health.


https://emfscientist.org/

A 3 minute video from a Dr. Martin Blank.

Dr. Blank has had over 30 years of experience conducting EMF research at Columbia University and is a past president of the International Bioelectromagnetics Society.

Later WHO reports than above one, says there no proof of cancer either... or something like that (no studies were enough to prove, they say in a 2015 report I found...).

A biased study, it seems!
http://www.iemfa.org/wp-content/pdf/Annex-2-SCENIHR-mobile-phones-and-head-tumour-risks.pdf


Anyway, I think this 'war' goes as with lyme:

99.99% of medical establishment + standard governmental institutions X

X individual sufferers + 0.01% of physicians trying to help sufferers

--------------------

Here is the history how the FDA is everywhere to 'protect' you against EMR dangers!

http://www.lifeextension.com/magazine/2007/8/report_cellphone_radiation/Page-01


The program began, but Dr. Carlo soon discovered that everyone involved had underlying motives.“The industry wanted an insurance policy and to have the government come out and say everything was fine.

The FDA, which looked bad because it didn’t require pre-market testing, could be seen as taking steps to remedy that.

By ordering the study, law makers appeared to be doing something. Everyone had a chance to wear a white hat.”


Dr. Carlo and his team developed new exposure systems that could mimic head-only exposure to EMR in people, as those were the only systems that could approximate what really happened with cell phone exposure.

Those exposure systems were then used for both in vitro (laboratory) and in vivo (animal) studies.

The in vitro studies used human blood and lymph tissue in test tubes and petri dishes that were exposed to EMR.

These studies identified the micronuclei in human blood, for example, associated with cell phone near-field radiation.

The in vivo studies used head only exposure systems and laboratory rats.

These studies identified DNA damage and other genetic markers.

Says Dr. Carlo: “We also conducted four different epidemiological studies on groups of people who used cell phones, and we did clinical intervention studies.

In all, we conducted more than fifty studies that were peer-reviewed and published in a number of medical and scientific journals.”

the studies are out there (like some for chronic lyme). It's just that the WHO is not reading them, and not the FDA (they have their own researchers, as for lyme disease!).

---------------------------

Now the relation between lyme and EMR is not yet there, but THIS particular Greek study shows that 143 proteins are permanently altered.

http://electromagnetichealth.org/electromagnetic-health-blog/mice-proteome/


We have demonstrated that 143 proteins are altered after electromagnetic radiation, including proteins that have been correlated so far with ...

.... Alzheimer’s, glioblastoma, stress and metabolism.

In its perspective, this study is anticipated to throw light in the understanding of such health effects like headaches, dizziness,

... sleep disorders, memory disorders, brain tumors,

... all of them related, to the function of the altered brain proteins."

Dr. K., after reading this study started saying publicly: 'Do you want to die? Turn on your wifi.'

Electrosmog avoidance and protection is also on a number 1 position for treatment of chronic lyme and any chronic brain disease for many years (Dr. K's approach).

We don't want to hear about that, because of convenience, mostly. At least, that was my case at first. Until I became electrosensitive, mostly during lyme. [bonk]

[ 12-06-2015, 03:18 PM: Message edited by: Brussels ]

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Lymetoo
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Part of life is knowing when to stop.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Phoiph
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Stop what?
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jarjar
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If I'm not interested in a link I don't click on it. It is very simple.

Yes lyme has been around for eons but in the old days it wasn't weaponized. Many researchers have gone public that the mycoplasmas found in lyme, gulf war illness, HIV etc. didn't use to exist at all and they were created. See researcher Dr. Garth Nicolson on you tube speak on the matter or read some his research as well as others.

Research Operation Paperclip or read Lab 257. I could go on and on but don't have the time to go back and link all the researcher comments but its all out there to read.
Below is a part of a AP release from 2006

SAN ANTONIO (AP) -- The $10.6 million Margaret Batts Tobin Laboratory Building will provide a 22,000-square-foot facility to study such diseases as anthrax, tularemia, cholera, lyme disease, desert valley fever and other parasitic and fungal diseases. The Centers for Disease Control and Prevention identified these diseases as potential bioterrorism agents.".

http://www.msnbc.msn.com/id/10039154/

So, for the first time, a US government body admits that Lyme disease is a biological warfare agent. This is the reason that hundreds of thousands of men, women and children around the world have been left to rot with wrong diagnoses, or have had their Lyme disease acknowledged but been told that it is an "easily-treated" disease, given 3 weeks' antibiotics, then told to shove off when their symptoms carried on after that.

In Britain the existence of the epidemic is denied completely, and virtually no effort made to warn or educate the public about the dangers of ticks, which carry the bacteria Borrelia burgdorferi.

The Borrelia genus has been a subject of biowar experimentation at least as far back as WW2, when the infamous Japanese Unit 731, which tortured and experimented on live prisoners, studied it.

The reality is, Lyme disease is for many a chronic, horrendous, incapacitating disease producing crippling fatigue, constant pain, loss of memory, possible paralysis, psychosis, blindness and even death.

It was an ideal biowar agent because it evades detection on routine tests, has an enormous range of different presentations, and can mimic everything from ADHD to multiple sclerosis to carpal tunnel syndrome to rheumatoid arthritis to chronic fatigue syndrome (M.E.) to lupus to schizophrenia. Enemy medical staff would never know what had hit them, nor even that ONE illness had hit their population, rather than an unexplained rise in dozens of known conditions.

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Judie
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Personally, I was taken in by a bunch of scams when I first became disabled. Some of the alternative treatments that others say helped, were huge emotional, financial and time drains. It was quite devastating.

This was long before Lymenet. Now I research well before trying something new at this point in my life. I have no idea how a newbie would be able to absorb and critically think about a lot of the threads here.

It's great to see thread topics like "new to Lyme, help" because info is broken down in the thread and the person can be met where ever they're at.

Overall, I find Lymenet VERY helpful and supportive.

I think one of the issues is what works for one person, doesn't work for another.

I was the most healthy when I was living in a town with tons of wireless and smart meters, so threads on those don't mean much to me. Removing my mercury fillings put me in dental hell for the following 6 years (not from mercury poisoning, but from being allergic to the replacement material, I would have been better off leaving it alone).

I will only speak from my own experience. I would not assume to know how most people think.

Yes, it is sad to me to see some posts on things that were a waste to me.

I have no idea how anyone could even take on the task of "cleaning up" the site, since I don't think there could be an easy consensus of what should stay or go.

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Phoiph
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Well said, Jarjar!

To respectfully add to Judie's comments...alternately, some of us spent our hugest "emotional, financial and time drains" pursuing "traditional" treatment for Lyme that was "quite devastating"...(even with LLMD's) and it was finding an alternative treatments that saved our lives.

Filtering, "cleaning up" or otherwise censoring information is not the answer...as sharing that information may be someone's ticket to wellness.

There is no easy or clear cut way to find one's path through the Chronic Lyme Maze...it is a unique life journey for each person...

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Lymetoo
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quote:
Originally posted by Phoiph:

Stop what?

-
I felt that Brussels was going on and on and it's really off-topic. She's beating a dead horse, so to speak.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Lymetoo
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quote:
Originally posted by Phoiph:

Filtering, "cleaning up" or otherwise censoring information is not the answer...as sharing that information may be someone's ticket to wellness.


-
Exactly

--------------------
--Lymetutu--
Opinions, not medical advice!

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bitbit99
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certainly we have been robbed
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WakeUp
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Censor important Lyme disease conversations about things like illegal spirochete research in Tuskeegee, Guatemala and Plum Island--- or the effect of EMFs on our immune systems?

Sorry, but I vote NO to censorship-- and it seems that many others here agree with me.. (Delphi technique works in reverse, too, folks)

"Offense free" "cleaned up" zones are a transparent way to control and suppress the free flow of information about Lyme disease.

If a link's topic "offends" you--- its very simple--- DON'T click... You'll sleep better..... and the rest of us can enjoy discussing and learning about illegal spirochete research in Tuskeegee and Guatemala-- and about how the same people who did this illegal research may be trying to suppress information about the Lyme spirochete today...

The paternalistic idea that patients here have such a low IQ that they cannot analyze information for themselves-- is-- respectfully--- sheer nonsense...

What most needs to be "cleaned up" are those who would suppress the free marketplace of ideas regarding Lyme disease-- those people who would keep us in the stone age by using manipulative Delphi techniques, attacks against members' parents or grandparents, or plain old ad hominems.

So much lying has occurred about this disease on the part of the mainstream medical community-- that many people here have lost their trust in the mainstream medical community-- after seeing dozens of mainstream doctors---and they are rightly seeking alternatives--- some of which are working for them!

I think I can decide for myself whether I want to use an $18 ethernet cable with no EMFs, or a $200 WIFI router laden with EMFs. I don't think its anyone else's business how I decide to spend MY money....

I purchased several hundred dollars worth of herbs a while back, and I discovered that Burdock did a great job of lessening my arthralgia--- It was WELL WORTH $200 to me. I could have spent thousands on doctors.

Some of us are curious about Lab 257, illegal research on spirochetes in Tuskeegee and in Guatemala, and on weaponization of spirochetes.

The people who call for shutting down debate and information with the excuse that patients are "too dumb" to decide for themselves--- are revealing a lot about who they are, and what they stand for..

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Phoiph
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Keebler...I think you may have misunderstood WakeUp's statement...

It is an argument supporting people's intelligence and right to access and interpret information for themselves...

More of the thread may have to be read to understand the context.

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Keebler
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-
Oh, oops. I did misread it. Thanks.

I had read the full post, however, my eyes do swerve a lot.
-

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WakeUp
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quote:
Originally posted by jarjar:
If I'm not interested in a link I don't click on it. It is very simple.

Yes lyme has been around for eons but in the old days it wasn't weaponized. Many researchers have gone public that the mycoplasmas found in lyme, gulf war illness, HIV etc. didn't use to exist at all and they were created. See researcher Dr. Garth Nicolson on you tube speak on the matter or read some his research as well as others.

Research Operation Paperclip or read Lab 257. I could go on and on but don't have the time to go back and link all the researcher comments but its all out there to read.
Below is a part of a AP release from 2006

SAN ANTONIO (AP) -- The $10.6 million Margaret Batts Tobin Laboratory Building will provide a 22,000-square-foot facility to study such diseases as anthrax, tularemia, cholera, lyme disease, desert valley fever and other parasitic and fungal diseases. The Centers for Disease Control and Prevention identified these diseases as potential bioterrorism agents.".

http://www.msnbc.msn.com/id/10039154/

So, for the first time, a US government body admits that Lyme disease is a biological warfare agent. This is the reason that hundreds of thousands of men, women and children around the world have been left to rot with wrong diagnoses, or have had their Lyme disease acknowledged but been told that it is an "easily-treated" disease, given 3 weeks' antibiotics, then told to shove off when their symptoms carried on after that.

In Britain the existence of the epidemic is denied completely, and virtually no effort made to warn or educate the public about the dangers of ticks, which carry the bacteria Borrelia burgdorferi.

The Borrelia genus has been a subject of biowar experimentation at least as far back as WW2, when the infamous Japanese Unit 731, which tortured and experimented on live prisoners, studied it.

The reality is, Lyme disease is for many a chronic, horrendous, incapacitating disease producing crippling fatigue, constant pain, loss of memory, possible paralysis, psychosis, blindness and even death.

It was an ideal biowar agent because it evades detection on routine tests, has an enormous range of different presentations, and can mimic everything from ADHD to multiple sclerosis to carpal tunnel syndrome to rheumatoid arthritis to chronic fatigue syndrome (M.E.) to lupus to schizophrenia. Enemy medical staff would never know what had hit them, nor even that ONE illness had hit their population, rather than an unexplained rise in dozens of known conditions.

Thank you and well said, JarJar-- Many others here agree with you!
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susank
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My big question: how to get my brain back?

I feel like a walking zombie. Severe brain fog, depression, anxiety - everything to do with the brain. Like my head is full of cotton.

When I was first Dx'd - I did not want to do Abx.
I went to see a doctor of classical homeopathy first. Gave it a few weeks - gave up.

I had read about Bicillin and Rocephin.

Gave in and got a B-LA injection at the doctor's office. I could not believe how much better I felt the next day. So. that is what folks are talking about - B-LA is great.

The same thing happened after I got my first doses of IV Rocephin. I was in the ER for a respiratory infection. I could not believe how much better Rocephin made me feel - like I was not sick and never had been. Amazing.

The same thing happened with my first Glutathione injection and the first time I drank some salt with VitC.

Those four things made me feel so much better - once. Subsequent doses of the same I don't feel "elatedly" (word?) better - either feel nothing or worse.

Around the time I was Dx'd with Lyme I also found out I have an immune deficiency - CVID - so started on IVIG. I tolerated it well enough for years - then not.

I feel like I am wasting away and dying by inches.

I have tested positive for Lyme, Bart H., Chlamydia Pn and Mycoplasma Pn as well as several of the viruses - ie EBV, HHV6 etc.

I have never taken the Abx for Bart - to afraid of them - side effects.

I took Abx on/off for years. I tried some herbal treatments.

I am getting sicker by the day - and wonder if it's from the above things I tested positive for - or something we have not discovered also wrong with me.

I went off Abx for months. I get scared of what is happening to my brain - and think I must go back on Abx to save my brain - try to get it back. To me that means B-LA or Rocephin.

So having been off Abx for months - a few weeks ago I got a respiratory infection. I HAD to take antibiotics. I was Rx'd Biaxin - which I had never taken before. So - to treat a resp. infection I took a drug that could hit Lyme, Bart., Cpn and MycoPn. That is something I had not thought of - needing Abx for something else - that also hits the bugs that have probably multipled a hundred-fold over the past Abx-free months. Not good.

I really had given up treating for Lyme and Co's. I cannot tolerate the high Abx doses required to kill it all off - if it/they could in fact be killed off. So why bother?

Something has happened with my eyes - blepharitis/conjunctivitis - whatever is about the last straw. I just started back on my usual 100 mg/day Doxy for dry eyes. Who knows what that will do in regards to the other infections I carry. Make them resistant?
Make me herx? Really - this is all too much. Oh - do I have Candida or not? Leaky gut or not?

Where is my brain? Can I get it back?

Brussels I wish you lived next door to me and could advise me. I would be willing to try so many things - but I am just lost trying to figure it out.

I have been at the point just to let sleeping dogs lie. Not go after the bacteria - just figure out how to survive with the bugs - dunno - "just" get rid of the toxins they emit. Something like that.

Why do I/we feel so bad? Is it from the bugs? They are causing the damage/pain to muscles and joints - and every body part?

Or is it more their toxins?

Most of the detoxing supplements make me sick.

Really I feel like the walking dead. I have not completely given up - because I would like to ride my horse a few more times in his/my life.

What can I/we do just to feel better?

The KISS version please. Thanks.

--------------------
Pos.Bb culture 2012
Labcorp - no bands ever
Igenex - Neg. 4 times
With overall bands:
IGM 18,28,41,66 IND: 23-25,34,39
IGG 41,58 IND: 39
Bart H IGG 40

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Phoiph
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susanK...

I can relate...I never thought I'd get my brain back OR ride my horse again after 8 years of hell...but I have.

Keep the faith...there is hope.

If you like, you can read the "KISS" version on this thread (I suggest reading all pages):

http://flash.lymenet.org/ubb/ultimatebb.php/topic/1/125201

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koo
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OP, I understand what you are trying to say. I think there is a fine line between having an opinion and being opinionated on this board.

I would hope we could also agree that there are no absolutes when dealing with lyme and they shouldn't be expressed as such...."you will never get better if....".

Lymetoo, you are correct...discernment is in order. I think desperate people do desperate things and try all ideas floated out there.

I have a friend who was cured, yes, cured, of late stage lyme with nothing other than ABX and some initial supplements . She probably doesn't know what a heavy metal is, didn't pull out mercury fillings, and is not gluten free. She is around 15 years out from treatment, parties hard in her fifties, had a husband go through cancer, and never recurred.

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Brussels
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Guys infected early 90s didn't get all co-infections we get by the end of 90s. So says dr. K.

Burrascano was right: abx cocktails were working then. In the past, many were healed with a couple of abx and supplements.

After 2,000, the story changed. The more recent you got bitten, the hardest it usually is. Even though there are some cleaner ticks than others...

It is not ONLY the LENGTH OF SICKNESS that counts, in my non-medical opinion.

It is the degree of dirt (in and around our body and in the ticks/ insects that bit us) that counts most.

I know a lady bitten in the 80s, with full bullseye rash covering half of her back, then lyme symptoms grew slowly in the years.... She's my sister in law.

She never treated lyme until now, she's more than 50.

Her health was never great, but she never treated lyme. Her health is still not great, but she's alive, living her life, without treating lyme.

When I test her energetically, it only comes Borrelia, no co-infections.

People are different, ticks are different. She is chronically ill for decades, but not handicapped like we were. She has bouts of chronic fatigue, then gets better. That goes for more than a decade that I know her.

Had I not treated my disease, I wouldn't be here. My daughter was already in wheel chair too, more than once.

There are many lyme diseases, many bodies, and immune systems. The older your last tick bite, the luckier you are.

We still get attached ticks, every single year. And not once, an average of 5 times.

I was desperate, like koo said! I did try many things because I had no choice for survival reasons.

I'm out of treatment for 6.5 years, also preparing to drive 12 hours in Xmas + NY parties with friends.

I couldn't even take ABX, as I got sicker from them than before taking them. Stomach pains were unbearable. Not even herbs in big amounts, like Susan. Either I tried different things, or I succumbed.

Follow Burrascano only was not an option. My daughter was only 2 when she fell first ill. She couldn't take many abx either (age, tummy aches, multiple allergies).

I mean, we gotta move with options that were offered, even if they looked crazy. We had nothing to lose, really.

today I swear by energy tests, high voltage treatments, infrared, homeopathy, megahydrate, psycho kinesiology... I can't swear by abx because I could never take these and had to look for options!

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Keebler
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-
Different strains make a HUGE difference in symptoms, ability to recover, etc.

Here is an exerpt from the book "Cure Unknown" by Pam Weintraub in which she talks about this aspect of lyme disease.

http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/91327?#000036

Topic: How did Burrascano cure himself?

see her THREE posts here in thread "How Did Burrascano cure himself?" One of those:


p. 342 tells how Ben Luft, infectious disease specialist and Daniel Dykhuizen, evolutionary biologist, working together at Stony Brook went out into the field collecting ticks and analyzing Borrelia.

A few years later, they had a graduate student travel the Eastern seaboard as far north as New Hampshire and south through the Carolinas collecting ticks infected with B. burgdorferi spirochetes.

p.343 “The Borrelia were duly isolated and compared for differences in their genes.

Eventually the researchers focused on twenty strains, each with a different version of the changeable OspC. Working with those twenty strains, Luft learned that six didn’t infect humans and ten caused only a rash.

Only four of the twenty could leave the skin to invade other tissue like the heart and joints or the brain.

The most virulent of the strains turned out to be the prototypical B31, the version of B. burgdorferi … ultimately isolated by Burgdorfer and Barbour at the Rocky Mountain labs in 1981.

The implications are profound.

One of the most important is that if just four strains of the twenty cause disseminated infection, then the roster of rash-based studies on the treatment of early Lyme disease, conducted from the 1980s to the present, would have to be reassessed.

Take a moment to ponder the simple math: It would be impossible to accept results based on the assumption that 100 percent of Lyme rashes can cause invasive disease when a significant percent cannot.

Some of the classic studies claim very high cure rates for early infection; yet if the causative strain were of the rash-only variety, then even orange juice would be a “cure.”

Are recommended treatment protocols truly curing most of those with early, invasive borreliosis? Or has noise from rash-only strains obscured less rosy results?” (p. 344)

References From:

http://www.cureunknown.com

Cure Unknown - by Pamela Weintraub
-

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LymeNotLymes
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quote:
Originally posted by prconn:
Catgirl,

I understand that powerlines,cell phones, landlines and wi-fi emit electrical waves. We are electrical beings and emit our own waves. Research has proven it all to be true and fact based.

I just don't understand what your position is. We live in a world that is polluted by things that are much more dangerous and savage than electrical waves.

Let's bring this back to finding a cure and help for people with LYME! Lyme and other diseases have been around since the beginning of time and human existence.

Every aspect of being diagnosed,treated and hopefully finding a cure for Lyme need electricity,landlines,cell phones,computers and wi-fi. Without these tools we will never find a cure.

Thus I am still confused how this is related specifically to Lyme. These same conditions exist for every human disease and are not just specific to Lyme.

Just seems like a dog chasing it's tail.

I could not agree more. Of course the last time I agreed with someone my post was deleted. Yes, lots of things make Lyme worse. They make everything worse. Still, the main problem is Lyme and it's coinfections.

--------------------
CDC positive for: Lyme & Babesia duncani
Clinical diagnosis of: Bartonella

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Keebler
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-
We can manage our use of cell phones, computers, etc. as best we can. It does help to be aware of things we can do, even when there is a lot we can't.
-

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Haley
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Lyme is a Rubik's cube and doctors don't have time to solve it. It is up to us to figure out the answers. I have gained insight from both science and the intuition of patients.

My S/O is a Doctor , I know far more about Lyme than he does.

[ 12-09-2015, 09:47 PM: Message edited by: Haley ]

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Robin123
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Susan, re getting your brain back, we're all different, of course, so I can only say what helped me - I tested low in T3, went on Armour thyroid, and felt present again.

My doc explained that it helped restore a more normal metabolism back. My doc puts people on either Armour or Naturethroid, whichever one they do well on.

So have you had your TSH and T3 thyroid blood levels checked? If not, that's one place to start.

Re eyes, I find that drinking mangosteen juice stops my Lyme eye symptoms, which were floaters, light sensitivity, eye muscle pain, and blurring vision. I like the Mango-Xan version, as it's the most tart. You can find it in health food stores and online. I drink slightly less than an ounce a day.

You asked about candida - that shows up as a craving for bread and sugar, the things that the yeast wants. Do you have that?

People are also treating with herbs, like the Buhner herbs, Chinese herbs, etc.

Someone I knew treated with Chinese herbs and a constant PEMF machine and got better from Lyme. The PEMF machine boosted his body's electrical voltage. A sick body loses its electromagnetic strength.

I think alot of people treat their viruses with Valtrex.

Each of us has to solve our particular body's puzzles - we all have different strains and are affected in our unique ways.

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lpkayak
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i didnt read all those commments...here you can sob to what is important

i keep coming back because search works here it is impossible on fb groups...those are becoming useless to me...so much info , yes, but no way to go back and find it when you need it

--------------------
Lyme? Its complicated. Educate yourself.

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MichaelTampa
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quote:
Originally posted by prconn:
However power lines and cellphones adds nothing to diagnosis or treatment of lyme.

You are just woefully misinformed. Maybe it has little impact on your health, but it certainly affects how some with lyme must deal with their life. Sharing this information can help those figure this out and deal appropriately.

This is just an example that is wrong with your suggestion to just deal in facts ... who decides the facts ... reality is if everyone had the same view of the facts, then there would be no need for this site at all, or any site for support, just a simple wiki page on each topic would be all anyone would need.

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MichaelTampa
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quote:
Originally posted by LymeNotLymes:
quote:
Originally posted by prconn:
Catgirl,

I understand that powerlines,cell phones, landlines and wi-fi emit electrical waves. We are electrical beings and emit our own waves. Research has proven it all to be true and fact based.

I just don't understand what your position is. We live in a world that is polluted by things that are much more dangerous and savage than electrical waves.

Let's bring this back to finding a cure and help for people with LYME! Lyme and other diseases have been around since the beginning of time and human existence.

Every aspect of being diagnosed,treated and hopefully finding a cure for Lyme need electricity,landlines,cell phones,computers and wi-fi. Without these tools we will never find a cure.

Thus I am still confused how this is related specifically to Lyme. These same conditions exist for every human disease and are not just specific to Lyme.

Just seems like a dog chasing it's tail.

I could not agree more. Of course the last time I agreed with someone my post was deleted. Yes, lots of things make Lyme worse. They make everything worse. Still, the main problem is Lyme and it's coinfections.
So we should not do what we can, avoid what we can, to manage symptoms so we can manage to earn enough money to pay for lyme treatment ... that's it, just get lyme treatment that works on lyme, do nothing else at all supportive or ancillary ??? ??? ??? ???? ???????????????????????????????????????????????????????? ?????????????????????????????????????
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MichaelTampa
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quote:
Originally posted by koo:
OP, I understand what you are trying to say. I think there is a fine line between having an opinion and being opinionated on this board.

I would hope we could also agree that there are no absolutes when dealing with lyme and they shouldn't be expressed as such...."you will never get better if....".

Lymetoo, you are correct...discernment is in order. I think desperate people do desperate things and try all ideas floated out there.

I have a friend who was cured, yes, cured, of late stage lyme with nothing other than ABX and some initial supplements . She probably doesn't know what a heavy metal is, didn't pull out mercury fillings, and is not gluten free. She is around 15 years out from treatment, parties hard in her fifties, had a husband go through cancer, and never recurred.

Great for her! And then obviously not everyone is so fortunate.
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Keebler
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-
Michael,

Hear you very clearly, down to the exasperation in every punctuation mark and wide eyes that surely go along with this. Well expressed.
-

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ukcarry
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I agree with you, Michael. For many, there is more to the illness, or at least to what is keeping us ill, than infection(s).

Why reduce something complex to abc? In any case, a forum like this is here to exchange opinions and experiences; not to provide cut-and-dried, one-fits-all medical solutions.

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WakeUp
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Free speech and the free marketplace of ideas---- is positive, helpful and important to our nation--- and especially to the Lyme disease community. Many ideas that were considered "out there" 10 years ago are helping people recover today.

Why "clean up" these "threatening" ideas?

Today's "Offense Free Comfort Zones" are diametrically opposed to our sacred and valuable concept of free speech.

"Offense Free Comfort Zones" are being pushed heavily in the media and on college campuses today--- much to ALL of our disadvantage!!

We need a rich marketplace of ideas in America--- and in the Lyme community--- and this is very healthy.

"Cleaning up" forums that make a couple of people uncomfortable is a very unhealthy way to find a cure--- and there is almost certainly some sort of agenda behind those who would try to force people to be quiet by pulling out the "cleaning up" meme.

Topics like mHBOT, EMFs and also "Controlled Opposition" may ultimately help us find a cure. Why?

Because, for example, understanding an important concept like "Controlled Opposition" helps Lyme victims to be extra careful about WHICH Lyme organizations that they contribute money to.

If we all contributed to only those organizations that are PROVEN to support non-denialist research and education, we might eventually find a cure. Handing money to organizations that support Chronic Lyme denialists will probably never help us find a cure-- even if 90% of the work seems decent. And it enables and empowers Chronic Lyme denialists.

Censorship of ideas is very unhealthy-- it is a feature of totalitarian nations like the former Soviet Union--- and it is essentially un American.

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Phoiph
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Agreed, WakeUp!

In addition, it would be helpful on this site if we were able to discuss both negative and positive experiences we have had with LLMD's, in a respectful way.

In my opinion, this information is invaluable in helping others make more informed decisions and avoid possible costly mistakes that may be deleterious to their condition.

Doctors are often vehemently defended here JUST because they have an LLMD label. An LLMD label doesn't necessarily guarantee anything about that doctor's motives, ability or success in treating patients. I learned this the hard way...why should others have to?

Although it is allowable to discuss (and even "trash") non-LLMD's, this subject appears to be taboo on this site, as I have personally had several posts that I felt were helpful to others censored by deletion, no matter how respectfully worded.

Lyme Net is a very helpful site in many ways, but to truly be a non-biased source of information this policy needs to change...

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Brussels
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I can't believe what I read here today. I read it with a smile.

More and more people are now speaking out what no one was, in the past, here in lymenet.

In the past, there were God-like LLMDs and God-like protocols, and people DID believe on these FIXED practitioners and protocols.

With experience, years gone, failures, and experience exchanges, we see that there is no clear cut answer for anyone.

When I finally started getting out of lyme, I was SCREAMING to you all: I don't know how you guys can come out of lyme in a reasonable amount of time without energy test.

Of course I was bashed, and still am. But I only tell you what I think saved my life, my daughter's life.

Only going to do ART and muscle test once a month helped people out IN THE PAST, but in my case, I needed energy tests DAILY!!!

I swear I wouldn't be here alive, and not at all cured (even the word cured is bashed here) had I not learned energy testing. Dr. K is bashed for that, many people are.

But the reality (my reality at least) is that out of the box methods, techniques, can help many of us out of deep hell.

Had I not my energy testing, I wouldn't have found my own specific babesia protocol, bartonella protocol, and all binders, all anti viruses, all symptom relief acupuncture points, etc etc.

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Phoiph
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Although I realize it comes with the disease, it saddens me sometimes that there is such depression of spirit, pessimism, and disbelief in a cure in Lymeworld...that the methods utilized by those of us who ARE cured are so often immediately rejected and dismissed by the majority...

If it has happened, it is possible!

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TNT
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quote:
Originally posted by Keebler:
p. 342 tells how Ben Luft, infectious disease specialist and Daniel Dykhuizen, evolutionary biologist, working together at Stony Brook went out into the field collecting ticks and analyzing Borrelia.

A few years later, they had a graduate student travel the Eastern seaboard as far north as New Hampshire and south through the Carolinas collecting ticks infected with B. burgdorferi spirochetes.

p.343 “The Borrelia were duly isolated and compared for differences in their genes.

Eventually the researchers focused on twenty strains, each with a different version of the changeable OspC. Working with those twenty strains, Luft learned that six didn’t infect humans and ten caused only a rash.

Only four of the twenty could leave the skin to invade other tissue like the heart and joints or the brain.

The most virulent of the strains turned out to be the prototypical B31, the version of B. burgdorferi … ultimately isolated by Burgdorfer and Barbour at the Rocky Mountain labs in 1981.

The implications are profound.

It's not a surprise...., but, OMG, The implications ARE profound!!!
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sixgoofykids
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LLMDs are not discussed here because the board owners want this to be a board about support from other patients. It is a forum for members, it is not inhibiting free speech as you are welcome to use more public forums to voice your opinions on LLMDs, just not here. We keep a positive environment so people feel supported and get their questions answered. There are other venues for other needs.

If you have complaints about what is allowed on the board, voicing them on the board doesn't get your complaints to the right people. You would need to contact the board owners, but they are not going to change their mind. The moderators do not make the rules.

Part of the reason we don't allow negative discussions about LLMDs is that only half the story will be heard .... the LLMDs are not going to be coming on here to defend themselves. Plus, we all know, only the negative stories will be voiced here, so they'll all look bad. And any person in business has negative stories from some unsatisfied person. None of us are perfect. That negative atmosphere is not what we want here.

Also, we don't give people parameters on what they discuss. If you find it irrelevant, just scroll on by.

I'm moving this to general support since it's not a medical question.

--------------------
sixgoofykids.blogspot.com

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