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Posted 6/13/2016 3:03 PM (GMT 0)

Mustard Seed said...
...........

I said, if I come in here with a broken arm, I want a cast, not a diagnosis of "painful arm syndrome" and an injection. He didn't laugh.

CLASSIC!
Posted 6/13/2016 3:27 PM (GMT 0)
Oh my gosh I just read a few of those posts on the NDPH site and that is so sad. I want to say "Igenex!"

And I see myself as I sat in the neurologist office and he said to me "you don't get a headache with lyme disease." I was so stricken from that statement I could not talk or walk out. Flabbergasted is the word. I then glanced to his diplomas on the wall and wondered if Epson and Word made them.
Posted 6/13/2016 6:49 PM (GMT 0)
So I don't want to keep posting things from another into this forum (seems like I'm breaking some type of rule) but I have to post this last thing.

So people have responded to me:

"Although I doubt results will come back conclusive for all of us here, it is worth a try. Your list of symptoms and conditions on the previous page are a list of every symptom you could have wrong with you. It is a similar list found on sites that discuss CFS, fibromyalgia, chrones, morgellons, ... Many of these have fallen under the umbrella of psychological conditions. Only recently have some of them been considered real conditions. It seems quite probable there is an infection process in play. In the case of Lyme, it is not a clear case to be certain. Does the cocktail of drugs just control the many secondary infections occurring within the body? Or does it really target the Lyme parasite? Most doctors do not support this as a possible cause of the many conditions you have listed. Most I imagine will claim you to be a hypochondriac.

The condition known as Lyme seems like a Matryoshka nesting doll. A deer makes people sick. No. A tick that lives on deer that bites people makes people sick. No. A spirochete living in deer consumed by a tick that lives on deer then bites people and makes them sick. This is currently our understanding of it. However it is quite possibly more complicated and could be that the transmission is far more casual in nature.

Has anyone else had success Lyme testing. I have not heard from BS in a while. Did you ever get tested for Lyme?"
Posted 6/13/2016 6:52 PM (GMT 0)
in which I responded:

"So lyme is carried by multiple vectors. Ticks, mosquito, lice, fleas, spiders and biting flies. These are only the vectors scientifically proven to carry the lyme bacteria. I repeat, they are not just carried by ticks. And lyme bacteria can also be transmitted sexually.

CFS, Corhns, IBS, Fibro, are all symptoms not root causes. It is very common for people who are positive for lyme and co-infections to first be misdiagnosed with these other conditions (I've spoken to many of them, it's a VERY common story).

So I pretty much shared all factual info. I can possibly share. I hope at least some of you all will get tested for lyme and co-infections through Igenex, instead of pulling your hair out in here about a mysterious illness. Though lyme is pretty mysterious in its own right because it misunderstood.

Also, people should find a llmd (lyme literate doctor).

Once again I can only present facts and my own personal experience with lyme and other lymies that have been where you all are. But eventually they found answers and were medically (meaning proof from various test, including but not limited to an antibody test) diagnosed, some of them years after searching."
Posted 6/13/2016 6:54 PM (GMT 0)
At least I got them to a "well it's worth a try attitude". If many of them do it, then a decent amount will come back positive and then maybe that can swing threads conversation in the right direction.

But my work there is done. I'm only going to present facts and helpful information, I'm not going to try to "convenience" anyone if they are not trying to listen.

I can't go around trying to be Captain-Save-A-Lymie.
Posted 6/13/2016 7:09 PM (GMT 0)
Good going, Dacarte. Planting seeds is a good thing! That's what I do all over the internet! The only time I'll "waste" is when someone appears to be ignorant of the facts - and if they begin to open up, then I'll continue to share information with them. But, some people want their misery and their many doctors visits (i have an aunt like this), so although I may try to plant a seed of information, it's usually abandoned with illogical arguments and I will leave it alone at that point.
Posted 6/13/2016 7:11 PM (GMT 0)
This reminds me of two things. One is a comment a friend local to me here in the country posted when I shared my RMSF diagnosis on my facebook page. She posted that her husband had a test that said he was positive for RMSF but he's been fine, never got sick. Of course I wonder why he ever got tested in the first place. I know she was trying to minimize my fears, but she also knows I've been terribly sick for many years, so it was a bit too late for me not to worry. And at the same time I know that as long as I've known her she's suffered from really bad, debilitating headaches and no medication or anything else works really well for her.

The second thing that my Internist likes to announce, and it's on my diagnosis records -that I have FUS. "Fever of unidentified source".
Sigh.

The reaction you get when you try to suggest Lyme is as if you're trying to convert their religion. The blinders come on and the protests start.

Post Edited (julymorning) : 6/13/2016 1:15:31 PM (GMT-6)

Posted 6/13/2016 7:35 PM (GMT 0)

julymorning said...

The reaction you get when you try to suggest Lyme is as if you're trying to convert their religion. The blinders come on and the protests start.

That is kind of how it felt, so I didn't want to do that. I just dropped the facts and left.

I even told them if you still want to continue to pull your hair out and drive yourself crazy with crazy theories (because there was some crazy ones in there), then go ahead. If you want some answers get tested for lyme and co-infections (I stressed co-infections too) from Igenex and not the CDC.

Oh and one guy even said the he tested positive for candida. I let them know lyme and candida go hand in hand and I even explained why.

So people have been finding singular co-infections and candida but no one is connecting the dots to lyme.

Not there fault though. Lyme is grossly under-recognized, researched and understood by the medical community, how could they on their own connect those dots.

I also re-mentioned to them about "level headed guy". "hey you know the guy that was leader of this thread, yea he's gone. He stopped posting like 40 pages ago. Because he went to the Hansa center and got treated for vector borne infections and reported he felt significantly better. Yea that dude moved on with his life and left you guys here still pulling your hair out. *hint hint*"

I said it in much more polite way though.

Reading through all those pages it almost felt like they enjoyed more being in misery and complaining versus finding answers and solutions.

It was kind of weird.

That forum is like the really dark version of this forum.
Posted 6/13/2016 8:27 PM (GMT 0)
LOL. I have both the New Daily Persistant Headache Syndrome and the Sleepy-All-The-Timey Syndrome!
Posted 6/13/2016 8:39 PM (GMT 0)
To be fair, I'm not saying New Daily Persistent Headache is a complete crock.

There's a large number of people who have NDPH (or some other, undiagnosed condition, currently being called NDPH) who don't have Lyme. We have to remember that not every single mystery illness in the world is Lyme.

I would argue people who improve on antibiotics or other Lyme treatments are highly likely however.
Posted 6/14/2016 6:15 AM (GMT 0)
Very sadhow so many of us suffer due to ignorance and posibly arrogance in medical community. So much damage and loss could be prevented if our doctors and nurses and dentists would get properly trained
Posted 6/14/2016 6:46 AM (GMT 0)
That poor guy ,he needs abx fast. Antiinflammatories.
Zika virus does these too. But he should be tested for lyme too. I don't know his location. I hate to see these people too, that you could help but don't connect the dots or think docs are gods, big,big, mistake.
To survive research take action, tell doctor "this" is what I have. Treat it.
Posted 6/14/2016 7:00 AM (GMT 0)
Anyone know neuro who specializes Lyme? Am driving from il. To east coast, Maine,Gp(middle) Vermont.(central) New York, near West Point.
I would like some advice if they know about severe disautonomia and Lyme. Had 30 years, but just events every 5 years so. Bit in fall. And spring everyday scary. Afib Heart attack main risk. Lung clots from constrictions too.
Had three meningitis lyme.89',2012 twice.vegal nerve ruined .
Driving even couple hours I get very high bp. Might have trouble long drive but see family, I refuse to be scared from activity. Will double ,triple up meds, rest legs up frequently. Going alone.
I thought maybe while there a sympathetic doc might have some useful advice. None in Midwest for my kind of lyme. Mayo was like a lost pup in the woods.
Posted 6/14/2016 11:30 PM (GMT 0)
So people are coming around and getting test for lyme and co.

I stressed to them that those in the US use Igenex (Not sure if people outside of the US can). However those outside of the US are finding best labs they can.

A lot of these people have tested positive for co-infections but didn't connect it to lyme, I hope I helped bridge that gap.

My last post on there:

"Many (not all) will test positive for lyme on here from a western blot. If in the US please use Igenex.

Also lyme coinfection are considered coinfection because they are additional bacteria found in vectors, not simply because someone with lyme happened to then get the coinfection from another means.

Now I'm not saying some can't, all I'm saying is it has been proven that vector that carried lyme also carried these coinfection.

To the other poster that asked about collagen loss. It is 100% scientific fact that lyme is notorious for damaging collagen. It causes us lymies'face to thin out and get dark circles in the eyes. We call it "lyme face". It's also why joint pain and issues are notoriously common.

What we lymies do is take collagen supplements or make actual bone broth to eat. Also gut health. The lack of gut health due to lyme causes allergic and/or autoimmune reactions. Dark circles, lips being really dry and chapped. The color in lips becomin dull, etc.

Well I dropped a bunch of facts hoping to help people on here and I hope I did. You are welcome to the lyme forum if you finally want helpful info. To start treating and get better rather dismiss me and everyone else that has mentioned lyme.

Are you better yet? If not maybe you should look into lyme more like I and some others have suggested in this very long thread.

300,000+ new diagnosed cases per year (stat by the CDC). And that's only diagnosed. When you add that up over the decades, they believe 1 in 15 people have lyme and co. Whether they are asymptomatic or not.

This isn't some rare illness. God speed people"
Posted 6/18/2016 10:33 PM (GMT 0)
So I feel I did some good. Many of them are now getting tested for lyme. However they still doubt that lyme can be very infectious and cause this much havoc.

I tried to explain it's often a combo of lyme and coinfections. Plus things those infections can cause like candida/fungal infections and skin infections like staph, due to a supressed immune.

They believe it could maybe lyme enough to get tested but they are definitely underestimating what lyme can do to someone.

You would think they would believe someone (me) that has lyme, erhlichia, and mycoplasma that has experienced all of the symptoms they have.
Posted 6/29/2016 1:26 AM (GMT 0)
People are testing positive for lyme on this other forum. I feel a combination of vindication and happiness that they can now get treated and not continue to go years maybe even decades not knowing whats going on and getting worse.
Posted 6/29/2016 1:44 AM (GMT 0)
I see this lyme adventure as a challenge - how awake and aware do I want to be and become. It asks of me, some pretty deep changes, perhaps for some - that is too scary and it feels safer to be lost in the last of chaos and cycle in a place/space of no solution. Like Traveler, I found this place, and knew it was where I'd get the support I need in a situation where a LLMD isn't in my budget.
Posted 6/29/2016 1:52 AM (GMT 0)
Did Dr. J. tell him lyme?
I do hear great things about Dr. J and the Hasna Center-I know he spent time with Dr. Rau-doesn't he tell you specifically what your issue or issues are?
Posted 6/29/2016 1:54 AM (GMT 0)

magoo2 said...
Did Dr. J. tell him lyme?
I do hear great things about Dr. J and the Hasna Center-I know he spent time with Dr. Rau-doesn't he tell you specifically what your issue or issues are?

No. A lot of them are from over seas. Europe and China. Apparently China is having a bad epidemic of lyme.
Posted 6/29/2016 2:12 AM (GMT 0)
Them meaning lyme bacteria?
Posted 6/29/2016 2:33 AM (GMT 0)
Great job Dacarte3! this will make such a huge difference for those who tested positive. And I hope that any who tested negative realize that a negative test doesn't mean they can rule out lyme. Also, Dr Horowitz has a list of the bands that even if you are positive on just one means you've had exposure to the lyme pathogen.

What counts is getting people to consider these pathogens in the first place. Unfortunately there is so much misinformation surrounding these infections and the multi-systemic chronic nature they can take. These infections are protean, they can mimic anything under the sun. They are likely much more prevalent than is currently understood by the public and mainstream medicine, and as you mention likely transmitted much more easily than is acknowledged. Heck, Willy Burgdorfer caught lyme disease from an infected rabbit's urine splashing in his eye!

My thinking in regards to a lot of the neuro conditions, cfs, fibro, etc is hey, give it a shot, see an llmd/llnd and at least rule out these infections. But go to the doctors who understand these infections and can properly diagnose or rule them out. What do you have to lose?!

Post Edited (sebreg) : 6/28/2016 8:44:42 PM (GMT-6)

Posted 6/29/2016 2:56 AM (GMT 0)
Hi dacarte3!-

YOU ARE AWESOME!!!!:)

What a wonderful and time consuming task that you have done!!!

You have probably helped out so many people by post all your knowledge about Lyme and co- infections!

And now that some are testing positive for Lyme, hopefully more will follow with getting tested.

Thank You so much for spreading the word!!! And helping so many people that are suffering!
Posted 6/29/2016 3:32 AM (GMT 0)
yea people got tested and as they were waiting on their results were still making post how they really have their doubts. The main reason is they have been through so much hell and they just can't believe bacteria can wreak that much havoc. Most people underestimate lyme and other bacteria greatly.

The systemic wide range of very unpleasant symptoms, they can't imagine a microscopic bacteria could do that. Of course I explained to them about co-infections and how that makes things worse and their bodies are most likely not just fighting lyme but multiple infections.

To give you an example, one guy on there got tested positive for lyme back in 2011. That shows you how much people don't think lyme is the reason they feel like crap. He essentially just ignored it to certain extent and thought it had to be something else.

But then they started getting their results back. Of course many can't afford testing and don't have access to quality lyme and co tests.
Posted 6/29/2016 3:34 AM (GMT 0)
Apparently there's a lab in Europe (Germany to be exact) called Armin. I guess that's Europe's Igenex.
Posted 6/29/2016 3:52 AM (GMT 0)
What happens though a lot of times is that in places like UK or France the doctors there discount the German testing and Armin labs. So even if you get positive results for lyme the French and British doctors will say it is bogus and you will get 0 treatments and be told that you are overly obsessed with lyme and you will usually just be given something like antidepressants. The doctors saying this are idiots (imo), and are causing a lot of people to not be treated. Germany is at the forefront of these infections, testing, and treatments. France and UK lag far behind and their health systems are in full denial.
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