Not sure if this is allowed here but I would like opinions on this Youtube video

Might be helpful for you to summarize the main points of the video, if you have time. A lot of people will be wary of links they find on a forum, and many will not have the time to watch the whole thing.

Also, the link I'm seeing is for a video that's only 1h 8m, called Lyme Cryme - is that what you meant to link to? Thought I'd mention this because the length you describe is much longer.

Great documentary that exposes the fraud that is now Lyme Disease. PLEASE, EVERYONE, do not use the term Lyme Disease, because it is the crime! Like Alan Macdonald said, "American's are dumb for using the term Lyme Disease, it is Borreliosis." Using the term Borreliosis and the host of other issues it causes including post-sepsis, anergy, a immunocompromised and tolerized immune system, autoimmunity, neurological disorders (neuroborreliosis), cardiac problems, etc., is the right term to use and will set aside the crime and the politics that comes with the fraudulent definition of Lyme Disease.

Watch the documentary. The same criminals are still in power today and EVEN front so called Lyme advocacy groups like the fraudulent Lyme Working Group. They have commited color of discrimination violations as well as RICO fraud. These criminals who tried to patent borrelia burgdorferi and create a monopoly on all test kits and patient blood are seriously demented. And nobody wants to call them out!

Why are we in this position today. Borreliosis sufferers homeless, suicide rampant, llmd's paying huge fees for treatment that might not work, IDSA doctors denying treatment, and even many dying from complications that are Borreliosis related?

It was the definition change at dearborn in 1994 that led to this nightmare. The falsification and rasing of the cutoff standard on the ELISA to test the efficacy of a bogus vaccine. The rasing of this standard made it so that the sickest patients, neuroborreliosis patients would not test positive and they knew this. That way the 85% with neuroborreliosos related issues would test megative on the ELISA, whilstt the 15% of HLA linked hyper reactive cases of high antibody counts would teat positive. Hence, an 85% effective vaccine!!!

This test is STILL BEING USED even though the consensus at dearborn was that it was 15% accurate and is not FDA approved.

Yale does have a patent on a hijly accurate and sensitive test for borrelia burgdorferi and albeit many more borrelia strains but WILL NOT USE IT!! I wonder why?

And nobody calls these criminals out. Under Our Skin quietly explained some of the players invovled but nothing more.

In order to fix the nightmare we are in, we need justice and compensation. The criminals who are trying to profit off of the sick, and are using us to simply advertise their new vaccine by fearmongering when they deem necessary for profit, which is exactly the same as the last vaccine and uses the same toxic lipoprotein are still walking free slandering borreliosis patients and denying them treatment!

So, in conclusion.

An enterprise (that literally is what they called themselves) comprising of insurance companies, corrupt doctors, patent holders, the CDC, NIH, IDSA, the racketeering organization the ALDF, smith and kline, imugen, corexia, and others wanted to create a vaccine that they knew wouldn't work because it is a relapsing fever organism (said this in their studies before 1994) and conducts ategenic variation (that's why spyhilis doesn't have a vaccine), but they invessted millions into creating it, so can't stop now.

Hence, they had to falsify the diagnostics to use that falsified test (disregard neuroborreliosis sufferers by raising the cutoff standard so they are seronegative) to test the efficacy of a vaccine that does not work and was pulled the same year it was released via ultimatum because it caused debilitating symptoms and even killed a few people. That was in 2001.

To cover their fraud they signed the 2006 guidelines that made the fradulent Lyme disease definition of hard to get easy to treat as the sole guidelines for doctors to abide by. And now we are here. Using the same falsified tests!! With the criminals walking free to cause more havoc with the next vaccine.

Your right it is 1 h 8 m, sorry for the confusion.

I have been trying to learn all I can about Lyme, because my husband is struggling since his Dx. We are 5 months in and he has aged 20 years before my eyes and swears daily he is going to Die soon. Of course it doesn't help that we saw an infections disease Dr who took him off oral Doxi (2 weeks), and put him on IV Picc line of Ceftriaxone for 28 days. After much discussion we decided he has probably been fighting Lyme for a year at least. During the first 9 months he went to 5 Dr's with varied odd issues, none of the Dr even though about Lyme. In December 2018 the last 2 weeks, we went to the ER every day, some days twice. He had panic attacks, pain that moved around, high blood pressure, low blood pressure, trouble breathing, insomnia and stomach pain that doubled him over and put him in a fetal position. The only thing that was found was Gall Bladder stones, that night was a nightmare for both of us. After 2 weeks of spending hours and hours in the ER, he wanted to go again on a Friday, after 3 hours of waiting, we were shown a room and waited for the Dr. When she entered she took one look at him and said You again, what are you doing here. Then she belittled and berated him for 20 mins, I was livid! Now mind you some of what she said I get, and he didn't express what the problem was well, but OMG how could any person talk to a patient who came to the ER for help like that. I read her the riot act, told her how dare to talk to someone that way there are real problems that you didn't even bother to listen for or hear. I told her she was unprofessional and asked what she intended to do to actually help him instead of belittling him? This was before we found out he was dealing with Lyme, and were there to have him tested for guillain barre syndrome. She refused but left the room without a word. Came back 20 mins later saying she called a Neurologist and she said test for Lyme. She made it seem like that test was the only thing she was willing to do.

At that point I knew that again we were being blown off, nothing would come of it, and neither of us though staying would tell us anything new. As we were leaving 2 nurses came into the room and heard us talking about how upset we were again for wasting our time coming to this hospital. They said if it was their choice they would go to Lehigh Valley Cedar Crest hospital. So we went home ate dinner, packed our bags and did just that.

It was the same system but a much better hospital. It was also like night and day. The Dr we saw came up with testing for guillain barre syndrome on her own. They did blood work and he actually had a MRI of his head and spine that took over 2 hours. By this time it was 1am, a kind nurse actually wheeled a gurney into his ER cubicle and let me sleep for 3 hours. He was admitted and stayed 2 days with all kinds of blood work and a spinal tap done. A couple of day later a Neurologist called and told him he was positive for Lyme and asked him to immediately start a course of Doxi 500 mg, twice a day.

I did insist my husband take a Probotic, when he started antiobx but didn't understand he should have taken a much stronger one. So I think the Ceftix damaged his Gut because he ate less and less, finally had no appetite at all and lost a lot of weight! He is depressed, and keeps saying his gut is shutting down. He is so skinny and frail it scares me. He had a bad day once in front of me, talking about how he had to just leave and kill himself because he couldn't die in front of our sons I called our Dr and said we have discussed depression many times but now it's time to medicate. I sub for the local school dist but now feel I some days I just can't leave him home alone.

Fast forward to now, he is even frailer and weaker. I noticed he should have taken all his depression Rx but has 2 weeks left. I have to give it to him and make sure he takes it daily. Same thing with the Tick support caps I have, they are a Stephen Buhner that needs to be taken 3 to 4 times a day. He maybe takes 1 a day and then complains it isn't working.

I am trying to help him but it's hard, he argues, rages, feels like he is going to die every night (that is a bit better when he keeps taking his meds but as I said I need to watch him do it). I know he can't help it but it's so hard to be a care taker for someone who doesn't want to live, won't leave the house, or do much of anything to help himself. The worst is the negativity, I have urged him strongly to talk to someone, a physiologist or in my opinion someone he can say what he needs to without hurting me. I am at my wits end here, but am totally honest about how hard its been.

So what kind of treatment is used for post-Sepsis??

But how many of us have Sepsis with lyme?
My understanding is Sepsis is an emergency and life threatening.

Are we mistaking a herx for Sepsis? .. or....

But the herxes resolve

That’s interesting about bart and not herxing.
Many llmd’s do say you can herx on bart.

And if I’m not herxing - then what the heck is happening when I get the fever, rapid pulse, body pain when I’m taking Rifabutin?

It’s “.....the immune system and the bartonella trying to chelate minerals and evade the killing agent”. ?

My LLMD says it is a herx and my previous LLND says the same.
So I wonder what my LLMD wouid say about this.
Does it matter what we call it?
It’s dieoff causing inflammation...right?

Lehigh Valley Cedar Crest, misdiagnosed me for almost two years. I repeatedly didnt test positive, so they told me it was everything but lyme. I saw all their doctors. I even saw their head of neurology with white matter lesions in my brain from an mri, and he said it was normal, not lyme.

T edwards got lucky in some respects given that he got a positive test result, however lehigh valley infectious disease are out of their league to treat and handle this disease. I learned it the hardway. Glad i decided to look outside the box, where i could finally get help

We also saw an inflections disease Dr and while he did admit he read Stephen Buhners book, all he did was Dx the second Antoibox, for 28 days. We saw him after they were finished, my husband at that point had lost a lot of weight, but he didn't seem bothered by that. As for his test positive for Lyme, I never asked if it was from blood work or his spinal puncture.

How is he doing now, not well. He is sick of Dr's and doesn't want to see another one. Just tonight again he said I might be waking you to go to the hospital, no idea why he says that most nights.

I am calling to make an appointment with a an LLMD tomorrow, I told him he is going if I have to call an ambulance to take him. He is not at all happy with me about that, but I feel I must make him see someone who can help him. He was tested for Co infections about a month ago, none showed up. He seems to be fighting me tooth and nail to treat Lyme, I have him on Buhner's protocol. Finally this week after much arguing he started to take enough to actually do something. Now mind you he swears he won't live long enough to make an appointment to see an LLMD, but he has been saying he is Dying for months.

His symptoms have gotten worse, and stranger. He smells something burning, and swears its coming from his body. He keeps cleaning out his nose with a netti pot, a red crust, tells me it is his sinus, or maybe it's bone. No idea I have never seen what comes out, and he refuses to see an ENT Dr. Pain that moves around, brain fog, argumentative, no appetite has lost a Lot of weight. Most every day he tells me I am worse and getting weaker. I have to remind him to take an Rx for depression, he swears he doesn't need it. I picked up a natural supplement to heal his gut, he hates the taste of it, to me it taste like fake berries, he swears it taste like gasoline or alcohol. You are supposed to take 2 teaspoons in 8 oz of water but I have been only giving him 1 teaspoon in double the water. Now the last 2 days he put it off and put it off and then went to bed so he wouldn't have to drink it. God love the man but I feel more like a mommy who needs to watch him like a hawk and make him take what he needs to. I know it's the Lyme, but he swears up and down it's not. Sigh it's been rough but I am trying to help him.

(Edited to add) We saw JAAN PETER NATKIN in allentown, and all I can say is Do Not under any circumstances see this DR. He comes across as helpful and caring but speaks out against ILADS, Lyme Treating Doctors,
Chronic Lyme & Lyme Related Organizations

Post Edited (T Edwards) : 5/28/2019 12:46:09 PM (GMT-6)

T Edwards - this must be exhausting and frustrating for you to deal with all this.
I think your husband needs a really good , experienced llmd to treat him.

I feel for your husband as well.
For some of us it really does feel like we are dying - and there is no answer. When the symptoms keep piling on and you keep losing more function - it seems hopeless...
I didn’t get angry but I was very sad and would cry for hours and tell my husband that I could not live like this forever and I’d rather be dead.

You said it wasn’t an option to travel to DC? (I’m trying to remember)

THe Pike County place is new, its unclear to me if they know how to diagnose and treat properly. i have asked our local support group, Lehigh valley Lyme and they haven't heard any feedback about it yet.

if would call and ask them if they do testing with MDL or Igenex, and if they prescribe triple antibiotic long term antibiotics. if they don't do that, i wouldn't bother and look to one of the other LLMDs in PA, NJ, NY, CT or MD

Just finished listening to the interview. Great Interview.

A lot of useful information...Thanks for bringing this to my attention!

Claude 783

Thank you everyone for suggestions, hope and sharing helpful links. I was determined to find an LLMD today used this link first. https://sites.google.com/site/lymedoctors/pennsylvania . Holy hell to find the infectious disease MD who treated us on it with a recommendation of NOT RECOMMENDED is mind blowing! It sure makes sense now. I did call the Pike county tick born disease and leave a message. He is adamant about not traveling far. sigh. Some days I just don't know what to do.