*Trigger Warning* If not better after 2 1/2 years, get tested

[[Bl...]]

I too saw a very young D.O here in the states after I had one tell me I needed jesus and another yell at me telling me he wasn't giving me a pain shot the moment he heard the word klonopin .  SO it has been rough , however , he did say that that this was going to tale at least 1-2 yrs . Based on the epic amount and the length of time taken .

I have had every test under the sun from Dr's curious to see what this was . They were in disbelief that benzos could do this to someone . They were all normal with the exception of blood sugar and I know alot of us have had high blood sugar . It is now back to normal .

That one young man though knew how poisonous this substance is and he and his colleagues no longer  rx these , which is good . He does know about protracted but also told me not to even think about that until at least 2 years have passed and to be patient and give myself time . I feel better now but my physical issues have been bad .

[[In...]]

If you are not better and getting progressively worse after two years please look into other things it could cost you your life to believe it’s all withdraw. So many have left this group and many of the Facebook groups and gone in chronic illness groups to find out all of it was caused by other things. Withdraw is real and does effect people but not if your worse after a certain point. hhv, Lyme, viral loads are a real thing that causes depression, anxiety, fatigue, fear. Don’t let it cost you your life to wait and see and then it has progressed further.

 

Story, I am in the WORST shape 23 months. WAY worse than I was after I quit GABA drugs and alcohol. I keep being exposed to things that normal people can handle like new furniture, magnesium and other shit that makes me worse and worse. The thing is I have not taken any pills or anything. All my issues came from breathing (INHALING) stuff in. Took plastic off new table and the gasses were so strong! It put me into an actual real seizure. I am going in reverse.

[Guest [Ko...]]

Indigo - my parents recently had their kitchen remodeled and the glue they used completely screwed me up.  I felt like I was going to lose my dam mind even more than I am now.  I guess some of us are more prone to chemical sensitivities during this. 

[[In...]]

In the glue contains formaldehyde, Xylene and other hydrocarbons that could hit GABA-A. Hydrocarbons are GABA. That's why those kids huff glue and paints.

[[ss...]]

Jackson1,  Hope4Us who used to get on this forum posted on one of her latest blogs that she was diagnosed with limbic encephalitis.  I'll post her blog post here:

 

 

 

My Sweet friends,

 

It has been so very long since I have posted.  A few years now maybe.

 

I hope all my friends here have healed, written success stories and are filled with zest for life.

 

I am not there yet.

 

I continue to suffer autistic like symptoms,  monsterous mood swings, the rage, depression, fear, aching, burning, numbness, itching,  digestion and bowel pains, neurological symptoms etc.

 

I still babble and run off for miles while so fatigued and hyper at the same time and often the police come and question me.  They continue to return me to Mr. Hope although their have been a few times when they have hand cuffed me and taken me in and . . .I don't want to recall . . .but I have, by the grace of God, been spared from mental health forced drugs and returned to my husband who has pleaded to allow him to continue to seek doctors to help me.

 

So I have remained benzo free and all the other psychiatric drugs free.  I remain completely clean and free of all of those horrific type of addictive drugs.

 

And yet I am suffering as if I am mentally ill, emotionally disturbed, autistic, and allergic to all foods and only eating  meat, lettuce and pears.  All other foods cause itching, burning,  sleepless aching and waking bursts of fear, etc.

 

The last time I updated you all on my condition, a functional medicine doctor listened to all of my symptoms while I paced frantically in his office, plugging my ears and trying to tell him of my symptoms between babbles.

 

This particular doctor and his brother run a benzo withdrawal clinic and that is why I was there.  But he listened to Mr. Hope and I and when I mentioned the brain shocks and how I can't take naps and shock when drifting off to sleep, he said that it sounded like Benzo drug induced symptoms but he thought I could have Lyme Disease.

 

He tested and the Igenex Lab tests showed that I had a Lyme-like infection.  I didn't have the classic barillia,  but I had an Immuno Dominant Protein that showed my immune system fighting off the rector scale as the doctor put it. 

 

Well after that, he tried to treat me for Lyme-like infection and all supplements and treatments made me worse.

 

He sent me to Seattle where a Lyme doctor treated me most aggressively for two years and I declined and deteriorated suffering immensely.

 

My husband with the help of a dear friend put me in the car and drove me to California where the doctors out there said, "Stop all treatments! She is deteriorating!"  But then they continued to test me and treat me with supplements and all kinds of therapies and I have not progressed.

 

I was put on low dose naltrexon which was a 4 month nightmare and I raged and ranted in the insanity and grew thinner.

 

Then another Lyme doctor said I was post infection and my immune system was confused and it was attacking my brain.  His andogen injections scalded and burned my entire dermis, eyelids, genitals and I screamed for several weeks in agony.

 

Mr. Hope contacted a cousin of mine that I have not seen since childhood.  She was just a baby when I was a middle schooler.  But my cousin is an infection disease doctor.

 

Mr. Hope drove me to my cousin's home and she took one look at me and she suspected that I had a virus in my brain, or the antibodies of the virus in my brain.

 

There are 9 human herpes viruses and she suspected that I could have one of them.

 

She sent me to the Mayo Clinic.  They tested me for everything and said they found nothing.  They sent me away.

 

Mr. Hope did not give up and drove me back to Colorado while I kicked and screamed and bolted from the car into traffic and screamed at hotels and I can hardly eat, and my bladder burns and etc. etc.

 

Mr. Hope took me to an immunologist who researches neuro-immunology.  He took one look at me and took several vials of blood and sent it all off to National Jewish Labs.  He sent me immediately to have a S.P.E.C.T. scan.

 

He found what the Mayo clinic could not.

 

The scan showed that I have hyperprofusion  or not enough blood flow in my frontal lobs, temporal lobs, orbital and optcipal lob, ganglia, jirus, and several other places in my brain.  In my limbic system where the thalmus is, I have too my blood flow or hyperprofusion.

 

Four doctors looked at my scan.  One doc was the nation's top forensic specialist, another was the top doctor to diagnose carbon monoxide poisoning in the brain.

 

These doctors believed that I should be tested for the Human Herpes Virus 6.  So the immunologist drew my blood to test me for HHV6/igg.  It came back positive and high.  I have these rouge antibodies attacking my brain and central nervous system.

 

I also have high voltage gated calcium channel antibodies attacking.

 

This is all like an auto immune condition.

 

It is similar to the lady who wrote the book,  "Brain on Fire."

 

Jackie, do you remember telling me years ago that you listen to this lady tell her story on the 700 club and perhaps that what was going on with me?

 

Well, here I am and I think this immunologist is going to give me IVIG which is how they treated the lady with the brain on fire.

 

I am terrified as I continue to suffer and don't want to go on anymore.

 

I have had 8 treatments of neuro-feedback.  It is an non-envasive treatment to allow my brain to heal itself.

 

This HHV6 virus is one that we all have been exposed to, but for some of us it will get in the brain when the immune system is compromised by some other infection.  The  HHV6 comes from Roseola.  It can be misdiagnosed as mononucleosis.

 

 

Thank you for listening.  Please write back.  I have not taken benzos after tapering and withdrawing years ago.  I still have not touched any of these kinds of drugs.

 

I am suffering.  Hope4us 

 

P.S.  so Jackie you were right.  My brain is inflamed with encephalitis because of the rouge antibodies still attacking and causing less blood flow in some parts of my brain and too much other places in my brain. The lady with brain on fire was different but similar.  You were right years ago.

 

Does anyone know about taking the IV to put human healthy IgG antibodies in me?  I am terrified as I have been for so long with all the doctors have done to try to figure this all out.  I will have to take the IV at a very low dose and I am still afraid as very low dose of everything I have every taken has hurt me.

 

That was the end of her blog post. . . . .

 

I think she meant "hypoperfusion" or not enough blood flow, where I have it highlighted.  I also put in bold all the positive and high antibodies they found attacking her brain.  She gets  IV Ig immunoglobulin treatment now I believe.  I wonder how she's doing?  I'll bet this is what I have.  There's some kind of "attack" going on inside my body with all the internal vibrating, etc.  I did have a positive ANA, anti-nuclear antibody, test years ago while on the benzo's.  It's a screening test for autoimmune responses.  I wonder if they would have tested for these other antibodies if some of them would have come up positive, too?  I have alot of the symptoms that Hope4Us has.  I believe these "withdrawal" symptoms are an antibody response. 

 

 

 

 

 

« Last Edit: December 20, 2016, 04:35:59 am by Becksblue »

>Report This Post<    Logged

2009-Xanax, 1/4 of .25mg tab @ bedtime

2010-Xanax, cont'd 1/4 of .25mg tab @ bedtime

2010-Ambien, low dose, alternated with Xanax @ bedtime

2011, Restoril, 7mgs, alternated with Xanax and Ambien @ bedtime

2011, Lunesta, low dose occasionally @ bedtime 

11/15/12, 1/8 of .25mg. tab Xanax @ bedtime

11/22/12, off all benzo's and Z-drugs

 

[Guest [In...]]

Well, if she was being honest in her blog entry, you may be on to something.

 

How do we get tested for this? My doctors seem to either lack the knowledge or the passion

[[ss...]]

It’s the hhv 6 test and active viral load test.

[[Ti...]]

I cannot believe a person has gone looking for the most scariest story, from someone they don’t know, apart from an old blog here. Then posted such fear and mostly unfounded information on a support place for people whose worst enemy in a hideous recovery is stress. Fueling fear onto already chemically terrified people.  I’ve known of people diagnosed with MS and other stuff, for it then to get better. Protracted WD is a horrendous thing, you need to stop or be stopped. Thank you for making an already difficult day, more difficult. No wonder people give up, with such fear mongering individuals, intent on digging out the worst of the worst. This person could have even gone on to recovery. I was told by an experienced advisor of over 30 years, that they helped someone who was bedridden for 8 years, get well almost overnight. I’m sure they were extemely grateful they weren’t exposed to people like this, writing the worst thing a person in BWS needs to read.

 

We all know about diagnostic tests etc. You think people don’t rule shit out? Drs are paid to diagnose, not so much in my country, thank God it doesn’t work like that, but it seems they are in the US. No one knows anymore about this person. Go read some success stories and talk about that instead. Either that or stop writing, please, you’re harming people..

 

[[In...]]

I cannot believe a person has gone looking for the most scariest story, from someone they don’t know, apart from an old blog here. Then posted such fear and mostly unfounded information on a support place for people whose worst enemy in a hideous recovery is stress. Fueling fear onto already chemically terrified people.  I’ve known of people diagnosed with MS and other stuff, for it then to get better. Protracted WD is a horrendous thing, you need to stop or be stopped. Thank you for making an already difficult day, more difficult. No wonder people give up, with such fear mongering individuals, intent on digging out the worst of the worst. This person could have even gone on to recovery. I was told by an experienced advisor of over 30 years, that they helped someone who was bedridden for 8 years, get well almost overnight. I’m sure they were extemely grateful they weren’t exposed to people like this, writing the worst thing a person in BWS needs to read.

 

We have know about diagnostic tests etc. You think people don’t rule shit out? Drs are paid to diagnose, not so much in my country, thank God it doesn’t work like that, but it seems they are in the US. No one knows anymore about this person. Go read some success stories and talk about that instead. Either that or stop writing, please, you’re harming people..

 

 

Wow, that would be amazing to get advised and be able to get out of bed right away. I wish I had someone who could do that.

 

Since when does a support website get to a level where you are so ill or possibly a bad case and are not allowed to post due to scaring others. I assume these people just need to take their problems elsewhere.

 

I got blasted for writing a post regarding myself getting harmed by solvents off gassing from furniture. Someone stated that it can not be true and that I was off benzos to long for something like that to happen. They also couldn't believe that I was healing and then the LOADS of alcohol over a 2 year period set me back. I was then told that it is a scary post and I was upsetting people with the false statements.

 

I now mention to others that I support to watch out for off gassing or air fresheners that are putting solvents in the air because it can affect people. Am I scaring people? I think its relevant information. I assume that reading about possible substances that may cause setbacks on W-Bad is also scary and negative huh.

 

I do not feel her info is scary, or misleading, she is simply trying to understand why things seem to be getting worse. Its relevant info.

 

[[Ti...]]

I’m sick as hell too. I’m looking for hope not stupid fears from someone who went looking for them. I know only too well it can get or feel worse. I truly know this crap is unpredictable, twists abs turns all on its own, without posts like this. Believe me, I know. I have terrible health anxiety now, never did and have to put up with ignorants saying it’s not still WD, after ? when I’ve and probably everyone has had every test there is. I just wish I hadn’t read this tbh. You should absolutely be able to post your fears, but not something you’ve searched out that’s the scariest thing you could find, then ‘share’ it. This isn’t even their issue, just some random person, they have no clue about.

[[In...]]

I’m sick as hell too. I’m looking for hope not stupid fears from someone who went looking for them. I know only too well it can get or feel worse. I truly know this crap is unpredictable, twists abs turns all on its own, without posts like this. Believe me, I know. I have terrible health anxiety now, never did and have to put up with ignorants saying it’s not still WD, after ? when I’ve and probably everyone has had every test there is. I just wish I hadn’t read this tbh. You should absolutely be able to post your fears, but not something you’ve searched out that’s the scariest thing you could find, then ‘share’ it. This isn’t even their issue, just some random person, they have no clue about.

 

I have come to know 100% that it IS and has been all benzos and booze for me and many others. I have friends who are not off benzos thinking its some rare disease and they still have not got off the benzos and they deny its the issue because that's what the doc said.

I don't dismiss people for searching for answers. I know what the answer is. They just have to get their tests and find out for themselves.

[Guest [Le...]]

This topic really has nothing to do with actual post-withdrawal recovery support, so it has been moved to Chewing the Fat.

[[Ti...]]

I’m sick as hell too. I’m looking for hope not stupid fears from someone who went looking for them. I know only too well it can get or feel worse. I truly know this crap is unpredictable, twists abs turns all on its own, without posts like this. Believe me, I know. I have terrible health anxiety now, never did and have to put up with ignorants saying it’s not still WD, after ? when I’ve and probably everyone has had every test there is. I just wish I hadn’t read this tbh. You should absolutely be able to post your fears, but not something you’ve searched out that’s the scariest thing you could find, then ‘share’ it. This isn’t even their issue, just some random person, they have no clue about.

 

I have come to know 100% that it IS and has been all benzos and booze for me and many others. I have friends who are not off benzos thinking its some rare disease and they still have not got off the benzos and they deny its the issue because that's what the doc said.

I don't dismiss people for searching for answers. I know what the answer is. They just have to get their tests and find out for themselves.

 

 

Yes, unfortunately I’m a protracted case, with health fears abundant. I’ll leave this thread where it belongs. It just triggered me badly . It’s hard enough. Thanks

[Guest [mu...]]

I was told by an experienced advisor of over 30 years, that they helped someone who was bedridden for 8 years, get well almost overnight.

 

How did they manage to get better almost overnight? Who was their advisor? I only recently became not bedridden last year (I'm 6 years off) when I regained the ability to sit upright without back support for the entire day. I still can't be on my feet for very long though, among many other disabling symptoms. I'd love to know how this advisor was able to help someone get better almost overnight, if you're willing to share....

 

 

[[lo...]]

I was told by an experienced advisor of over 30 years, that they helped someone who was bedridden for 8 years, get well almost overnight.

 

How did they manage to get better almost overnight? Who was their advisor? I only recently became not bedridden last year (I'm 6 years off) when I regained the ability to sit upright without back support for the entire day. I still can't be on my feet for very long though, among many other disabling symptoms. I'd love to know how this advisor was able to help someone get better almost overnight, if you're willing to share....

 

I too was in bed for a long time .. 5 years .. this causes immense problems .. like you I cannot be on my feet for any length of time and my mobility is poor.  One cannot be in bed for this length of time and just recover, it simply is not possible.  The body is very weak, the muscles lose their strength, etc etc etc.

[[Tr...]]

How does one treat a viral CNS infection? AACH and lysine?