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

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.

Hey Man,

 

I've seen you post a lot about this lately.  How about you go and get the treatment for whatever you have and come back and tell us you are cured of the symptoms you are experiencing. 

 

You posted the same thing a whole year ago about PANS/PANDAS.  Did you ever get treatment for it?

I did get treatment as you know things are chronic in life and don’t just get better.....it’s trial and error.  I’m only saying it because years of people saying oh it’s withdraw etc prolongs people from looking into other things.

That is incorrect information. Protracted withdrawal is a waiting game most people will never know about. No point scaring people. Your statement is false. Two years isn’t long. My withdrawal dr said it took a minimum of 2 years, then amended that to five. Some will feel well at 6 months, some at 3 years. I’m sorry someone me frightened you so. Please stop spreading falsities

It’s not all false. Are you a doctor? Do you know everything about the human body? It’s not to scare to people it’s to think about all things out there instead of closed minded. There are many 5 years plus off who got worse over time who aren’t on these boards. It needs to be considered.

I'm sorry I even read this.

It’s wrong. I’m not a doctor but I have friends who know this stuff inside out and it’s b#^*+%#{,>>

 

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.

 

Such a strange thing to do.

 

If I thought I had Lyme disease, asking people in internet chronic illness groups to diagnose me would not be my first strategy. Normally people go to their doctors to be tested for all of these illnesses – at least that’s what anyone here on BB would encourage folks to do.

 

Also, nobody here would recommend waiting two years to see if it’s really withdrawal before checking with their doctors. Normally members end up on BenzoBuddies because everything else has already been medically ruled out.

 

Where are you getting your information?

 

 

main stream doctors many people go to don’t test correctly. Lyme test, bartonella, hhv6, babesia. Step, anti d n base are not test mainstream medicine test but the symptoms are what is described on benzo withdraw.

 

On W Bad benzo withdraw website there are many who say benzo withdraw that some symptoms were withdraw but after a period of time it was learned there were chronic illnesses which drugs can make worse but the withdraw won’t end until they are dealt with.

 

I don’t need a chronic illness group to diagnosis....most people I guarantee have a hard time checking everything because insurance doesn’t pay for a lot of this...

main stream doctors many people go to don’t test correctly. Lyme test, bartonella, hhv6, babesia. Step, anti d n base are not test mainstream medicine test but the symptoms are what is described on benzo withdraw.

 

On W Bad benzo withdraw website there are many who say benzo withdraw that some symptoms were withdraw but after a period of time it was learned there were chronic illnesses which drugs can make worse but the withdraw won’t end until they are dealt with.

 

I don’t need a chronic illness group to diagnosis....most people I guarantee have a hard time checking everything because insurance doesn’t pay for a lot of this...

 

OK, so are you saying that if you scare them with statements like the one below, they’ll suddenly be able to pay for the tests?

 

Here’s the deal – you’re just frightening people by posting this kind of fear-mongering stuff, so please stop now.

 

Everybody else, please see your doctors, and do not make assumptions about your health.

 

Most cities have inexpensive Urgent Care facilities, which are an option for those with no insurance.

 

. . .  Don’t let it cost you your life to wait and see and then it has progressed further.

Assuming that everyone is ignorant and doesn't know the difference between wd and something else is just plain rude and uninformed. Having been through this for almost 3 yrs I know with 99% certainty what a withdrawal sx feels like and what normal ailments do. I was a successful amateur athlete before this perfect health, super fit. None of this stuff happened to me in my life and at time before or while taking it, just when I stopped. My sx are all going away and I'm feeling better and better every week / month. I have had every test under the sun done and all are normal. I know from being on this site that most people have done similar things and had like results. Yes, you should see your Dr for tests if you concerned but don't come here for help and then tell everyone they are stupid or don't know what they are talking about. I didn't want to get involved but since you have been doing this for a while now in forums and private messages to people I'm getting a little annoyed now.

 

 

 

 

It is not ignorant to assume other things. If you actually read what I wrote instead of being so defensive. It’s not rude to throw out other things but it is rude to say it’s all withdraw. My question is why do so many that are not healed 7,8 years off? Is there’s just withdraw? Why is it not ok to question things when some are doing so terrible still so far off?

 

Good you could afford to have all the infection test and things insurance doesn’t cover and figure out it’s only withdraw. Many have actually messaged me from this site about other test who are struggling and getting worse at this stage.

I think there are likely more “Lyme” sufferers going through withdrawal unknowingly then there are people suffering from withdrawal who actually have Lyme disease.

It is not ignorant to assume other things. If you actually read what I wrote instead of being so defensive. It’s not rude to throw out other things but it is rude to say it’s all withdraw. My question is why do so many that are not healed 7,8 years off? Is there’s just withdraw? Why is it not ok to question things when some are doing so terrible still so far off?

 

Good you could afford to have all the infection test and things insurance doesn’t cover and figure out it’s only withdraw. Many have actually messaged me from this site about other test who are struggling and getting worse at this stage.

 

Its a tough pill to swallow. You are probably in the thick of it right now. When i was at 28 months i checked myself into a psychward for a month. I'm wayyyyyy way wayyy better right now at 5 years. Although, not completely healed, i have improved significantly

 

You will get better. I dont really think there's anyway around it

 

You need time, and distraction.

 

 

 

 

Why don't you just go get the tests run that you think you need?

I think there are likely more “Lyme” sufferers going through withdrawal unknowingly then there are people suffering from withdrawal who actually have Lyme disease.

 

I totally agree with u on this

I think there are likely more “Lyme” sufferers going through withdrawal unknowingly then there are people suffering from withdrawal who actually have Lyme disease.

 

I totally agree with u on this

 

I don't get it, that's just two ways of saying the same thing. I know people who took the expensive tests, supposedly had Lyme, didn't want to deal with it and are living a normal life. I was tested and it came back "inconclusive" and I was told by a "Lyme Literate" Dr that I had it, but I don't buy it, because I also know people who tested inconclusively for Lyme who recovered so what's that about??? No, I don't buy any of this. And I'm beginning to think that the Lyme test is a lot like the way Epstein Barr was once considered the cause of CFS. I suspect a lot of people have been infected with Lyme but that that isn't the cause of what they're experiencing in the cases of Lyme disease, at least not on its own, so testing for Lyme in withdrawal may come up positive or "inconclusive" but that doesn't mean it's the cause of your symptoms. It's just my opinion based on what I know. And it's not because I know nothing about how Lyme works because I was concerned about it for myself and researched it, and I have a friend in withdrawal convinced she has Lyme (and I do too) and treating and treating and getting nowhere. I think if she stopped the treatments and waited it out, she'd recover just fine, and who knows, maybe someday she'll get there, but I would never tell her that. And you can say if you like that I'm being irresponsible here to posit such notions... but I'm just stating facts, confounding, contradictory facts.

How far off are you? People have Lyme and have the same symptoms who never touched benzos. Why are there so many years and years off doing so poorly again?

Some people have done things that delay healing. Alcohol use, supplements that affect receptors, experimenting with other drugs. And then Lyme treatment only exacerbates the post withdrawal brain causing tremendous suffering. And it just takes longer (as many withdrawal focused MDs know) than people care to believe. Withdrawal is a physical problem that can throw all your systems into an uproar. You could have changes in thyroid numbers, blood pressure... my body temperature runs low but then balances out on its own. Test may very well show abnormalities, but that isn’t anything that time and clean brain living won’t cure (98 or so % of the time). Is there a tiny minority with other real medical problems? Certainly. But they are few and rushing to diagnosis during healing is ill advised

sstory87, go get tested for Lyme disease. It's that simple.

I have and had many more test. Just listening to people say it’s all withdraw when there are many people far off still not healed. Anybody know what happened to Hope4us? And many more that just disappeared when so sick....it’s a legit concern.

 

How far off are you? Asked in above statement. Clearly picking and choosing what you read.

Not clearly doing anything... just forgot, big deal. It's in my signature. 1.5 years on the 25th so still really early on. Not my first Rodeo by a long shot. Finally know what's what. You've made your point, you've had the reaction to your point. I'm out. Good luck to you, whatever you do decide to do.

That is incorrect information. Protracted withdrawal is a waiting game most people will never know about. No point scaring people. Your statement is false. Two years isn’t long. My withdrawal dr said it took a minimum of 2 years, then amended that to five. Some will feel well at 6 months, some at 3 years. I’m sorry someone me frightened you so. Please stop spreading falsities

 

You actually have a DR who stated 2 years? Where did you find this guy. That's a rare find to get someone to validate.

main stream doctors many people go to don’t test correctly. Lyme test, bartonella, hhv6, babesia. Step, anti d n base are not test mainstream medicine test but the symptoms are what is described on benzo withdraw.

 

On W Bad benzo withdraw website there are many who say benzo withdraw that some symptoms were withdraw but after a period of time it was learned there were chronic illnesses which drugs can make worse but the withdraw won’t end until they are dealt with.

 

I don’t need a chronic illness group to diagnosis....most people I guarantee have a hard time checking everything because insurance doesn’t pay for a lot of this...

 

OK, so are you saying that if you scare them with statements like the one below, they’ll suddenly be able to pay for the tests?

 

Here’s the deal – you’re just frightening people by posting this kind of fear-mongering stuff, so please stop now.

 

Everybody else, please see your doctors, and do not make assumptions about your health.

 

Most cities have inexpensive Urgent Care facilities, which are an option for those with no insurance.

 

. . .  Don’t let it cost you your life to wait and see and then it has progressed further.

 

Sstory, please reread Leslie's posts to you.

 

Also, many members leave the forum all the time for various reasons.  Many different reasons.  This forum is based on anonymity, so anyone can leave at any time for any reason.  Don't assume you know why Hope4us or anyone else left.  You DON'T know.

 

Again, we ask that you stop scaring people with your unfounded assertions.

 

Megan918

Administrator

 

 

He's retired now, but he is in Toronto, Canada.