posted
if you have lyme and especially neuro lyme i want to give you some truth that no one else is gonna give you, and your not gonna like it,, theres no cure!!! and it dont go away,, sorry but its the truth and the truth hurts,, trust me i live the truth every second of every day,, so look no further
-------------------- +++++++ do i have lyme, please comment, derealisation,anxiety,floaters,hypertension,tinnitus,dizziness,minor aches,igenix results,igm,**83-93ind,igg**41++ what do u think,please comment Posts: 195 | From california | Registered: May 2011
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lymeboy
Unregistered
posted
ugh... yea it sucks. Have you tried salt-c? It's helped my neuro stuff some.
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posted
what up lymeboy,, you been around as long as i have and you no as well as i do this **** aint going away,,i just dont no what to say dude,, were ****ed,, im just pissed and venting man this ****s is taking its toll on me
-------------------- +++++++ do i have lyme, please comment, derealisation,anxiety,floaters,hypertension,tinnitus,dizziness,minor aches,igenix results,igm,**83-93ind,igg**41++ what do u think,please comment Posts: 195 | From california | Registered: May 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Derk, parasite meds helped my neuro lyme a lot as well as floaters, and dizziness. Depersonalization is now gone for me. Parasites are a huge part of lyme yet missed so often by lyme docs.
There is hope, but I think some people need more help with parasites than others. They must be addressed though as they are a huge part of the picture.
Also, detoxing heavy metals has helped my tinnitus, it's greatly reduced.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
catgirl,, it just sounds to easy and to good to be true, you have to be a ****ing scientist to even treat yourself,,half the so called llmds are ****ing crooks, and i have to study and THINK of a way to treat myself and my whole problem is this depersonalisation ****ing nightmare which makes it hard to THINK,, ive been stuck in for 6 years,, thanx for the compasion,, but the encouraging pep talks dont even shoot me a glimmer of hope anymore,, its been to long,, im not suicidal so dont trip on that, im what they call ****ing miserable, and i go about my pathetic existance,lying and acting like everthing is just fine i should get a grammy im such a good actor,, acting like im not completley fried,, and not myself what so ever,, to be honest i quit drinking 6 months and 15 days ago,, and i was happier when i was drunk,,, hang overs were just 10x harder,,lol,,
-------------------- +++++++ do i have lyme, please comment, derealisation,anxiety,floaters,hypertension,tinnitus,dizziness,minor aches,igenix results,igm,**83-93ind,igg**41++ what do u think,please comment Posts: 195 | From california | Registered: May 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Why not try treating parasites and heavy metals? They are so easy for docs to miss. Look at the living hell autistic kids go through. What works for them is treating parasites and heavy metals. Some use MMS rather successfully. Dr. K has even said that autistic kids have symptoms that match lyme patients.
MMS is super cheap and does the job for many people. I've chatted with people here who swear by it. If you don't want to do that, you can always try salt/c and some form of chelation, but salt/c alone didn't do it for me. I needed parasite meds.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
did you have all the neuro stuff,, like d/p, thats the absalutely by far worst part,, that nazi scientist that created this b.s. lyme disease, that p.o.s really new what he was doing when he designed a biowarfare weapon that would effect the mind,,,thats besides the point,, but the point is do you remember all the emotions and insecurities that come along with the neuro crap, the bi polar, the hardcore anxiety, the depresion, it makes you scared of your own ****ing shadow,, so im nervous about messing with this thing,, i take the wrong stuff i could get worse or even new symptoms,,, i have made alot of progress,, but im far far from being whole again,,,, remember those days,, wanna take a walk down memory lane,,, im still stuck in this nightmare,, i am glad your better,, i just wish i was,, after 6 years you kinda come to a realisation,, lol prolly the most clearest thinking ive had is knowing im not gonna get better,, pretty sad,,,thnx for talking and letting me vent
-------------------- +++++++ do i have lyme, please comment, derealisation,anxiety,floaters,hypertension,tinnitus,dizziness,minor aches,igenix results,igm,**83-93ind,igg**41++ what do u think,please comment Posts: 195 | From california | Registered: May 2011
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Derk...
I've tried to explain to you before that I had all of the physical and mental neuro-symptoms-from-hell that you describe, including major depersonalization and derealization, for 8 torturous years.
Just like you, I had zero hope of recovery...but I was wrong. I'm 100% well, no medications, and have my life totally back now.
I truly hope you take the time to read this thread, preferably all 10 pages if you can. Toward the end of the thread you will begin to read posts from others who are recovering as well.
posted
Haven't read it all through yet. But I'm guessing this type of TX costs...
This is the big issue that compounds my neuro issues. Student loans, rent, overworked just to barely pay bills. Can't afford TX. Can barely afford Salt-c. Neuro issues create poor coping skills, dysfunctional anger, lack of focus etc. It all tends to pile up and eventually I cave and break down. Rinse repeat.
I would be trying every damn thing I could if I had the cash, but I do not.
I've come pretty far. Even with the neuro stuff, which I fear will never fully go away. But It's still there every day poking at me. I wake up soaked and shivering. I forget where I am. It's scary. 6 friggin years of treatment and more work and research than anyone I know has ever done. And I'm left with a family that hates me and still sick. Lot's of nagging symptoms, and barely any time to get it sorted out. And if I had time, I still do not have $$.
Money, for me, is the issue. This is something that people don't talk about with this disease. I wonder how many people out there are wandering the streets confused because they were too poor to get a diagnosis, let alone treatment. I'm sure thousands. And those of us that can get by do just that because it's all we can do.
Money doesn't solve all problems. But in this case, and this country, it would solve a whole lot.
All that said, I intend to read the rest of that thread and add it to my wish list...sigh...
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Phoiph
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Member # 41238
posted
Which is why I've been working very hard to help people find alternative ways to access mHBOT.
Cooperative sharing of a chamber and expenses is just one way people are doing this to bring costs down to a manageable level. There are ways.
Keep reading the thread until the end, and if you're interested, you can PM me and I'll send you more information....
Posts: 1880 | From Earth | Registered: Jul 2013
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Derk, yes I remember the neuro crap. It was hell. I am not 100% but I am better and I attribute that to treating parasites. I have more energy now and my mind is clearer. Depersonalization is gone.
I am still battling other co infections, but I'm convinced that without hitting parasites, I doubt I would have made much progress at all. Parasites are incredibly overlooked by docs (lots of reasons).
I'm telling you, they are the reason most people barely make any improvement. That is why Dr. K treats his lyme patients first for parasites, then he works on heavy metals (in that order).
Heavy metals are a big part of it too. Parasites actually carry heavy metals in their coats, so when you kill them, then and only then do they release it along with other toxins which will make you sick, so you must use binders when you kill them. You can use diatomaceous earth (it's inexpensive), or clay or whatever you like.
Lymeboy, no money, why not try MMS (inexpensive)? I've chatted with people who swear by it, and I've read lots about it. My husband has used it several times, and he said it helped him. He has also used parasite meds and said his head was much clearer afterwards, but thought the MMS worked best.
MMS pulls autistic kids out of the nightmare they live in by killing parasites and neutralizing heavy metals. IMO, the nightmare they live in IS neuro lyme x 10. The stuff works where modern medicine has failed them. You can read Kerri's book, it's really good.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
well its a new day im not feeling better but im not so pissed off today,,, sooooo,, you guys are awesome and thank you for the support,,, just nobody gets it!!!!!!!!!!!!! uggghh so ****ing frustrating,,,,,,, i live in cali,, far nor cal and i no more about lyme than our llmds,, let me remind all of you im very very educated on lyme and parasites,,i have a 6 year degree from all of you,, and living it myself,, i just dont no where to start, what to do ,who to trust,,, i would honestly rather be treated by one of you guys on here and i mean that,, i no who everyone of you are and your stories,,, just dont no what to do and i feel the neuro stuff is scary because i cant afford to get worse, ive worked very hard to get stable,, i have a baseline of feeling like ****,, and i dont want to get worse,,, the arthritic is a walk in the park compared to neuro
-------------------- +++++++ do i have lyme, please comment, derealisation,anxiety,floaters,hypertension,tinnitus,dizziness,minor aches,igenix results,igm,**83-93ind,igg**41++ what do u think,please comment Posts: 195 | From california | Registered: May 2011
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posted
phoiph,,i no what your saying about hbot is true,,, so if you believe in it so much,, why dont you mentor me and see if you can walk me through this hell,, if you can get me to a fraction of improvement in my mind,,, i will run with it like wild fire,,,ill be honest and most of the mods no this thats why they dont chime in, because ive been hanging around the site whining about my neuro stuff for a long time,,, the truth is ive never taken one single thing ever for lyme,,,, but check it out i dont have to because ive seen every treatment fail for everyone here,, so i figured id save myself the headache of experimentation until i find something thatr will work,,,
-------------------- +++++++ do i have lyme, please comment, derealisation,anxiety,floaters,hypertension,tinnitus,dizziness,minor aches,igenix results,igm,**83-93ind,igg**41++ what do u think,please comment Posts: 195 | From california | Registered: May 2011
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posted
i need a mentor to help through this, and not just a computer pin pal, like i need to talk over the phone about treatments, what to do how to do it,, you no like a study buddy, im not gonna tackle this unless somebody has my back,, its just alot, so if anyone is caring and compassionate enough to help than i will accept it,, if not its ok,, im already ****ed rite!! either way thanx for responding to my crap,,, its very much apreciated,,,
-------------------- +++++++ do i have lyme, please comment, derealisation,anxiety,floaters,hypertension,tinnitus,dizziness,minor aches,igenix results,igm,**83-93ind,igg**41++ what do u think,please comment Posts: 195 | From california | Registered: May 2011
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posted
catgirl, i would love to be educated more on parasites,, i no your rite about what you say,,i learned alot from gails post,, i remebering reading somewhere that parasites are so powerfull they control some of you thoughts, and supposedly they keep the host so scared to treat for self preservation, that you will actually no that the parasites are killing you, and you still wont treat because they have you convinced, and scared not to treat,,hhhmmm sounds like somebody i no??lol does that make any sense to any parasite worriors???
-------------------- +++++++ do i have lyme, please comment, derealisation,anxiety,floaters,hypertension,tinnitus,dizziness,minor aches,igenix results,igm,**83-93ind,igg**41++ what do u think,please comment Posts: 195 | From california | Registered: May 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
You are so right about them controlling us. They want to survive just like anything does. I muscle test everything, and just before the full moon I test negative for parasite stuff, all of it. It's amazing that they can do this. This is why energy testing is not a guaranteed method for treating parasites. They affect the outcome of energetic tests.
I've had a Dr. K practitioner tell me that I only had one type of parasite. Perhaps just one was moving while I was there, but I have passed many different kinds, hundreds of them over the past two years.
There is a whole other world living inside us (fascinating). It makes sense. We have a whole other world around us, energy wise, spiritually, etc, and it is in our makeup to survive no matter what. They are the same.
I do believe they are beneficial in some respect (help us with heavy metals), but lyme patients have way too many of them. Our immune systems need a break, so we have to knock them back. I've knocked a ton of them back, that's why I have energy now.
I used to only be able to do one thing a day if I was lucky. Sometimes only 1 thing every 3 days. Maybe just one load of laundry, and that didn't included putting it away. I had zero energy. Today I went to a dr's apt and 4 other stores. That is 5 different places I drove to today and it was effortless. I never could have done that before treating parasites.
I can also communicate better than I could pre parasite treatment. I can read and retain and process things better (analytically), and have much better control of emotions. I am sleeping better too. It's a big deal, IMO. And getting rid of their heavy metals has helped (sleep).
They hold people back from getting well. I know it's hard for people to grasp, but when people are spinning their wheels, why not try something else?
I highly respect Dr. K, and he of all the docs has been 100% correct about parasites being a major issue for lyme and autism patients. Treat them, don't wait any longer.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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-------------------- +++++++ do i have lyme, please comment, derealisation,anxiety,floaters,hypertension,tinnitus,dizziness,minor aches,igenix results,igm,**83-93ind,igg**41++ what do u think,please comment Posts: 195 | From california | Registered: May 2011
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
MMS protocol, super cheap and my husband said that made a big difference for him. Or you can try salt/c protocol combined with parasite herbs (must do both), or parasite meds. Parasite meds have helped me a lot.
I haven't tried MMS yet because what I'm doing is working for me (parasite meds and herbs). MMS is so cheap, anyone could do it. Remember to get binders too (DE, clay, charcoal, etc). You have to take binders beforehand to collect the toxins.
There are also some good threads on it it here on Lymenet. I would definitely ignore the naysayers if I were you. If they don't like it oh well. People have to do whatever works for them.
Mothers of autistic children have endured horrific pain and ridicule trying to help their children. If they can give their own children who they love more than anything MMS and have success with it, then that speaks volumes of how well it is working for their kids. IMO autism is PARASITES, lyme and heavy metals.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Catgirl
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-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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lymeboy
Unregistered
posted
Derk, I was doing Salt-C with Parastroy. It was beating the crap out of whatever is inside of me. I got very clear headed from treating Parasites with Salt-c. I did Parastroy too long and wound up with some Gastro issues that I'm still working out. Salt-C continues to help me daily. But I had to let the parastroy go for a good while. I wasn't careful enough with it, because it was working. I did it for like a year.
Prior to Parastroy and Salt-C, I was doing Dr. K's parasite protocol. This was rough. I hung with it for like 3 months maybe a bit more. The Albenza and Alinia knocked me on my ass. I couldn't get through a full two weeks on either. It was freakin strong. I still have a bunch of Alinia I want to try to take at lower doses, because I know I was herxing. I'd also need to get hold of a binder, which I didn't use the first time round. I used charcoal and Chlorella, but probably not enough.
These protocols have gotten me pretty far. ABX got me far as I could get for the time I think, then onto parasites and Salt-C. I ride a motorcycle almost every day and I work a lot. It's not great but every day on two wheels is a friggin victory right now. Didn't think I'd ever ride again.
I will continue to fight it and so will you. The hardest part is accepting what it is right now. How do you fight and accept at the same time? For me, it's really hard. It compounds the depression. But we need to be strong in the face of that too.
We're here for you. I know you want a buddy, I'm sure if you try long enough you will find MANY. I'd be there for you but honestly I've got so much in addition to the Lyme to deal with. I'm too afraid to be detailed about it here, but it is a LOT. I have yet another move coming up too. I'll do whatever I can for you. Maybe after I move I can get on the horn with you and shoot the Lyme****.
If you're interested in parasites the info is here. I spent a few weeks asking questions and I wound up with a few protocols. Not one call made! You can do it too.
Just being a part of this thread has put me onto Phoiph, who is trying to get the damn word out of what worked for him/her. A Compassionate human!! I'll be in touch Phoiph!
Hang in there Derk. You've obviously got a sense of humor, try to let that help you. Be nice though! Mine has turned on me before. USe this site. Unbelieveable info and people on here. I've been helped free of charge more times than I can count.
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Catgirl
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Member # 31149
posted
Here are a few people's experiences on parasite meds:
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Catgirl
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Member # 31149
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I forgot to tell you, don't forget about herbs. They have helped me so much with lyme and company. You can do buhner herbs (I do them and more everyday).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Derk...
You have a lot of suggestions here, and some decisions to make.
If you decide to pursue and commit to mHBOT, I will help you, just PM me.
Lymeboy...same goes for you, and thank you for the kind words...
Posts: 1880 | From Earth | Registered: Jul 2013
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posted
thank you to all,, thanx lymeboy,, and catgirl, and phoiph,,uggghh you guys are awesome,,, and i will be nice from here on out,,, thank you it means more than my keyboard words can express
-------------------- +++++++ do i have lyme, please comment, derealisation,anxiety,floaters,hypertension,tinnitus,dizziness,minor aches,igenix results,igm,**83-93ind,igg**41++ what do u think,please comment Posts: 195 | From california | Registered: May 2011
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Glad for you Derk!
Lymenet saved my life once too!! People in the same shoes than us.
I swear to you, I was very neurolyme, I had got a PhD in 2 languages that were not mine just a couple of years before.
But during lyme, I could barely drive my car (too much for me to concentrate and I did an accident), ....
... buying a loaf of bread was one of the greatest efforts for me (how much should I give, and no way to know how many coins I would get back)...
I kept meeting people I didn't know at all, but they all knew my name (I just smiled).
I got lost in the streets I knew by heart. So many times, I forgot where I was heading to.
Then when I found out what I was going to do, I forgot the way to go there!!
Then I found my way, but then realized I forgot my wallet, and couldn't buy what I wanted to. So I had to go back home fetch my wallet.
Then I could forget the way to reach my house, and I live in a tiny city!!!
I didn't cry about my miserable condition. It even looked funny, as I had to stop the car so many times to think.....
My brain was so bad that I didn't REALIZE I was in serious trouble, so I was not even upset about my condition. I think it's like Alzheimer....
I didn't know anymore who I was...
It was upsetting not to arrive to do anything properly in a day, just that.
It's 100% gone, for the last 5 years. My brain is back, languages are back, memory is back (except for the people I met during my neurolyme days).
So just treat yourself as best as you can!! There are solutions. You'll make it, Derk!!
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
Dirk, I know a LOT of cured people who did it this way!
They don't come here anymore because they have gotten their life back and put the humiliation of some un-caring Doctor(s) they got stuck with out of their mind.
A viable cure has been around for over two years know.
Try it this way...you just need to kill off the spirochetes trapped in your spinal fluid with a combo of two antibiotics that will cross the blood brain barrier and kill both the spirochetes and the round cyst-like primitive eggs they lay as they are dying.
Mino/Tindy/Artemisinin did it for me twice after being bitten both in 2010 and again in 2012. Read about how it works here:
Two of the best examples were Tournament Bridge players who had to quit but are back at their card tables again!
I have been symptom free for over 3 years now.
Good luck and God bless...
Posts: 5 | From Tennesse | Registered: May 2015
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lymeboy
Unregistered
posted
How to get those antibiotics without a LLMD and limited funds?
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lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561
posted
Derk, it's lyme in putnam. we've messaged,today is fright/ flight. There is no peace. Did new protocol that put me over the edge. Write when u want. I can't say enough I understsnd. my kid is foreign to me this week. God bless.
-------------------- He took u to it, He'll you through Posts: 2837 | From NE. | Registered: Apr 2007
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kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Derk, I just want to chime in here and tell you that there IS hope!! My DD had neuro-lyme for well over 10 years starting when she was 4 years old. After five years of treatment, she got her GED, is now working a job and is attending college. She has made straight A's for two years now(except for that one pesky C in Chemistry.) She is starting a CNA class tomorrow that will go on for three weeks in addition to taking two on-line courses this summer.
I say all of this because when she was bitten at 4, I honestly thought that we were going to have to place her in a mental facility at times. She would think that she was going to kill us. She had severe OCD, ODD, tics, it was an awful nightmare. Fast forward to her early teen years and she couldn't do schoolwork at all for at least two years because her brain was so bad.
If you can't afford a LLMD, PLEASE just do something, anything to help ease the burden on your body. Detox, parasite treatment, whatever you can afford is better than doing nothing.
I am really sorry for what you are going through.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
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Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
I had it bad and have gotten my life back around 90%. I kept treating and switched LLMD's when things stopped working out. There are herbs like Byron White or the Cowden or Buhner protocols that help people too.
I also know that yeast/candida was/is a huge contributor to my symptoms. Look at the most recent yeast threads and you will see the link to emotional problems and yeast.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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