LymeNet Home LymeNet Home Page LymeNet Flash Discussion LymeNet Support Group Database LymeNet Literature Library LymeNet Legal Resources LymeNet Medical & Scientific Abstract Database LymeNet Newsletter Home Page LymeNet Recommended Books LymeNet Tick Pictures Search The LymeNet Site LymeNet Links LymeNet Frequently Asked Questions About The Lyme Disease Network LymeNet Menu

LymeNet on Facebook

LymeNet on Twitter




The Lyme Disease Network receives a commission from Amazon.com for each purchase originating from this site.

When purchasing from Amazon.com, please
click here first.

Thank you.

LymeNet Flash Discussion
Dedicated to the Bachmann Family

LymeNet needs your help:
LymeNet 2020 fund drive


The Lyme Disease Network is a non-profit organization funded by individual donations.

LymeNet Flash Post New Topic  New Poll  Post A Reply
my profile | directory login | register | search | faq | forum home

  next oldest topic   next newest topic
» LymeNet Flash » Questions and Discussion » Medical Questions » I'm confused- can Lyme be cured or do people just go in remission, or what?

 - UBBFriend: Email this page to someone!    
Author Topic: I'm confused- can Lyme be cured or do people just go in remission, or what?
jenniferk32
LymeNet Contributor
Member # 30718

Icon 1 posted      Profile for jenniferk32   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
I've seen so many posters here saying so many different things that I'm terribly confused.

Some say they've been symptom-free for 5 years- does that mean they're cured and it won't come back?

I've seen others say they've been fighting it for years and years and are still struggling with it.

I read an essay by Amy Tan in her autobiographical book "The Opposite of Fate" where she says that any time she goes off antibiotics her symptoms coome right back.

And then I've read that it can be cured with the antibiotics. To be honest, I've seen my LLMD three times so far (in two months) and I haven't asked him because I was afraid of the answer. I wanted to just assume that his plan of giving me several months of oral antibiotics followed by at least 2 months of IV antibiotics would just knock it out entirely.

Does the prognosis depend at all on how long the person went having the disease without being treated? I remember exactly when I had the EM rash (I had no clue what it was at the time) and it was in the year 2000. Hallucinations, memory problems, light and sound sensitivity, and extreme anxiety and emotional lability started about 6 months later. It progressively got worse over the years.

I was finally diagnosed in February and started antibiotics and a zillion supplements.

So having had it that long, can I be cured? DO people get cured, or is it always there with the possibility of becoming active again?

Posts: 107 | From Hesperia, CA | Registered: Feb 2011  |  IP: Logged | Report this post to a Moderator
5vforest
LymeNet Contributor
Member # 29365

Icon 1 posted      Profile for 5vforest     Send New Private Message       Edit/Delete Post   Reply With Quote 
Lyme disease can be cured. The bacteria cannot be completely eradicated from your body, but it can be put under control enough that you won't have to think about Lyme disease ever again should you choose not to.

I'm sorry that you've been sick so long, and your treatment and recovery will most likely take a long time, years probably. However, most people (95% say many docs) are able to return to their pre-Lyme state after proper treatment.

Also, there is a recent quote from Dr. Burrascano who says that if you don't relapse after three years of ending treatment, you will not relapse ever.

Posts: 340 | From san francisco, ca | Registered: Nov 2010  |  IP: Logged | Report this post to a Moderator
lyme in Putnam
Frequent Contributor (1K+ posts)
Member # 11561

Icon 1 posted      Profile for lyme in Putnam     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm stuck on the remission side. Just from my experience. God bless those who are symptom free and stay that way.

--------------------
He took u to it, He'll you through

Posts: 2837 | From NE. | Registered: Apr 2007  |  IP: Logged | Report this post to a Moderator
map1131
Frequent Contributor (5K+ posts)
Member # 2022

Icon 1 posted      Profile for map1131     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm not giving up that the cure is found for all someday. I believe some are very blessed people and had the right treatment at the right time and it goes away.

But remission is attainable for good percentage of those ill with lyme & co. I believe that there are some great minds working together to make this more probable.

I don't believe the 95% number. Does that number include early dx with an obvisious bulls eye mark? Does that # include the acute and chronic ill with lyme & co?

Is that someone that has lyme only? As long as there's a 95% cured number out there, why do we need change in awareness, education, treatment funding?

If that's true, then heck we just need to get over it. Take a anti-depressant and more on.

Jennifer, patience is a virtue and one must learn that virtue during this illness.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

Posts: 6444 | From Louisville, Ky | Registered: Jan 2002  |  IP: Logged | Report this post to a Moderator
desertwind
Frequent Contributor (1K+ posts)
Member # 25256

Icon 1 posted      Profile for desertwind     Send New Private Message       Edit/Delete Post   Reply With Quote 
IME it is hard to say whether one is in long term remission or "cured".

The possiblity of re-exposure/infection needs to be kept in mind when one is well for months or years and then gets sick again - especially in epidemic areas.

Posts: 1671 | From Tick Infested New Jersey | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
map1131
Frequent Contributor (5K+ posts)
Member # 2022

Icon 1 posted      Profile for map1131     Send New Private Message       Edit/Delete Post   Reply With Quote 
My problem is I'm a tick magnet. I've lost count since '05 how many times I've pulled a tick usually nymphs off me.

Really hard to narrow down which enemy you are fighting.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

Posts: 6444 | From Louisville, Ky | Registered: Jan 2002  |  IP: Logged | Report this post to a Moderator
jenniferk32
LymeNet Contributor
Member # 30718

Icon 10 posted      Profile for jenniferk32   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
Well hopefully I'll never get bitten again. I'll be extra careful when out in wilderness areas. I live in the desert, so I doubt there's much if any danger here.

In fact, it's rather surprising that I got bit at all. I know mosquitoes and ticks are different but they both suck blood and mosquitoes hate my blood. I've maybe had one or two bites my whole life and I used to live in an area full of them.

My brothers and dad used to be full of bites while they avoided me and my mom. Our blood apparently isn't very tasty.

Too bad the tick liked it. Or maybe that's the reason I never saw the little bugger- he took one taste and was so disgusted that he quickly detached and went in search of another meal. Maybe he made sure to leave the Lyme as revenge because he was a dissatisfied customer.

Posts: 107 | From Hesperia, CA | Registered: Feb 2011  |  IP: Logged | Report this post to a Moderator
thehause
LymeNet Contributor
Member # 21237

Icon 1 posted      Profile for thehause     Send New Private Message       Edit/Delete Post   Reply With Quote 
There is some evidence that those who have chronic lyme are not able to get better. This is more true for those with co-infections such as XMRV. Unfortunately, the medical community has responded only slightly to this problem.
Posts: 372 | From west of the mississitty | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
hadlyme
LymeNet Contributor
Member # 6364

Icon 1 posted      Profile for hadlyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm on the remission thinking.

Especially since I was treated my first time in 1999-2001 and great until 2009..

I've been back in treatment after all those years of being good.

I believe we can put it in remission.. but never cured. Believing that someday we will have a 'cure' for it.. but for now, I know I have this babs/fry bug, whatever you want to call it... in my redblood cells...

I feel its the co infections that we all deal with that we need to put into remission. Maybe lyme spirochete is gone, but those other little buggers seem to be the ones that are harder to control.

Just my take on it from all these years listening to others and what my body is going through.

--------------------
Lyme, Babs, Fry Bug..... Whatever it is, may a treatment be discovered to make us all whole again!

Posts: 941 | From AZ-MT | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
sixgoofykids
Moderator
Member # 11141

Icon 1 posted      Profile for sixgoofykids   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
I found this to be a great article on remission vs cure. http://www.drjerniganblog.com/articles/infections/333

I think it really depends on how you define remission and cure. I am either cured from Lyme Disease or I am in remission from chicken pox .... because if I am in remission from Lyme, why would the terminology for chicken pox be any different.

I was in remission for 12 years from Lyme until I got bitten again about 8 years ago. That remission was different than this time around. Then, I had to do things to stay in remission, like get enough sleep, avoid stress, etc.

I do eat healthy and exercise, but I'm 48, that's a good idea for general health. I also detoxify, but so does my husband who has never been sick from Lyme. But, if I fall off the wagon, I don't get symptoms like I did when I was in remission.

IMO, I am just as likely to break out in shingles as have the Lyme come out. Possible? Sure it is. I think it's more possible that I would get sick from another bite, which is why I avoid places where I might be bitten.

Remission and cure are just terminology. You can get better and not think about Lyme anymore. That's what's important.

--------------------
sixgoofykids.blogspot.com

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
Karensky
LymeNet Contributor
Member # 21350

Icon 1 posted      Profile for Karensky     Send New Private Message       Edit/Delete Post   Reply With Quote 
Good blog site Sixgoofykids !

--------------------
"Gratitude is not only the greatest of virtues , but the parent of all others "....Cicero

Posts: 254 | From new jersey | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
BackinStOlaf
Frequent Contributor (1K+ posts)
Member # 23725

Icon 1 posted      Profile for BackinStOlaf     Send New Private Message       Edit/Delete Post   Reply With Quote 
Asked my LLMD this yesterday. He also used the chicken pox analogy.

--------------------
First Symptom 9/09
Multiple docs, negative Labcorp test
LLMD: 1/10
Positive Igenex/CDC test
Treatment 2/10
2/10-8/10 Amox, ceftin, zith, flagyl
Currently: Bicillin, Minocycline, still dealing with severe breathing issues

 -

Posts: 1121 | From New York, New York | Registered: Dec 2009  |  IP: Logged | Report this post to a Moderator
tickled1
Frequent Contributor (1K+ posts)
Member # 14257

Icon 1 posted      Profile for tickled1     Send New Private Message       Edit/Delete Post   Reply With Quote 
Six,

What do you think made the difference this time around?

Posts: 2541 | From Northeast | Registered: Jan 2008  |  IP: Logged | Report this post to a Moderator
tickled1
Frequent Contributor (1K+ posts)
Member # 14257

Icon 1 posted      Profile for tickled1     Send New Private Message       Edit/Delete Post   Reply With Quote 
Six,

What do you think made the difference this time around?

Posts: 2541 | From Northeast | Registered: Jan 2008  |  IP: Logged | Report this post to a Moderator
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405

Icon 1 posted      Profile for lululymemom     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by thehause:
There is some evidence that those who have chronic lyme are not able to get better. This is more true for those with co-infections such as XMRV. Unfortunately, the medical community has responded only slightly to this problem.

I believe this to be true, and even Dr. B. states that the prognosis he delivers is that many will have to have ongoing maintenance therapy.

--------------------
IGM 41 IND, 83-93+ IGG 31 IND,34 IND, 41++, 58+, 83-93 IND

31 Epitope test neg.

Bartonella henselae 1:100

Posts: 2027 | From British Columbia | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
aMomWithHope
LymeNet Contributor
Member # 19255

Icon 1 posted      Profile for aMomWithHope     Send New Private Message       Edit/Delete Post   Reply With Quote 
I would definitely prefer cured, but I would be happy for remission for my child--

At this point I welcome anything that will take away her pain and fatigue and let her be a child again before she is grown!

I will never give up hope for a permanent cure--

Posts: 648 | From northeast | Registered: Feb 2009  |  IP: Logged | Report this post to a Moderator
sixgoofykids
Moderator
Member # 11141

Icon 1 posted      Profile for sixgoofykids   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by tickled1:
Six,

What do you think made the difference this time around?

Diagnosis and treatment. I knew there was a problem last time around, but never got diagnosed. I had known tick bites and all the symptoms of Lyme. I had been disabled months at a time by the fatigue and fibromyalgia, but I learned that various supps, diet, exercise, and sleep would keep me functional.

this time, I treated with abx for 20 months, then 9 months with the Bionic 880, various herbs for detox and parasites, and other natural treatments.

[ 04-15-2011, 04:21 PM: Message edited by: sixgoofykids ]

--------------------
sixgoofykids.blogspot.com

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
tickled1
Frequent Contributor (1K+ posts)
Member # 14257

Icon 1 posted      Profile for tickled1     Send New Private Message       Edit/Delete Post   Reply With Quote 
Six,

Did you do the entire 9 mos. of Bionic in Germany or did you finish up here somehow. Is it available in the states?

Posts: 2541 | From Northeast | Registered: Jan 2008  |  IP: Logged | Report this post to a Moderator
raw vegan runner
LymeNet Contributor
Member # 30432

Icon 1 posted      Profile for raw vegan runner   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
Cured? Hmmm. I am feeling pretty good right now. No major Lyme symptoms for well over a month. I have had periods of up to 9mo without symptoms. I'd like to think this time I am cured...

My thought though is what about the damage done by the *cure*? Due to the damage done to my gut from abx, I still deal with nausea/vomitting, poor digestion/leaky gut...The 'lyme arthritis' damage is still there, didn't go away because the bacteria did...

I am sure we can somehow, someway erradicate the bacteria...my concern them becomes how do we deal with what's left...

Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011  |  IP: Logged | Report this post to a Moderator
sixgoofykids
Moderator
Member # 11141

Icon 1 posted      Profile for sixgoofykids   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by tickled1:
Six,

Did you do the entire 9 mos. of Bionic in Germany or did you finish up here somehow. Is it available in the states?

I finished it here. The Bionic 880 is not commercially available in the US, you have to buy your own in Germany or use someone else's. Some use the PE1 instead because it's available in the US.

--------------------
sixgoofykids.blogspot.com

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
sixgoofykids
Moderator
Member # 11141

Icon 1 posted      Profile for sixgoofykids   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
Raw vegan, you are right, it takes a long time to deal with the damage left behind. It took a VERY long time to heal my gut. Almost two years.

I still have some damage in my left shoulder. It had been locked up and I thought it was permanent damage, but it finally is getting some more mobility. The damage is hardly noticeable, but I feel it and have slightly less mobility than my other shoulder.

It takes time. A friend with cancer said they are told that it takes the length of time of treatment to get back to normal. So if treatment was 6 months, then it takes 6 months to recover from treatment. I think we deal with a bit of the same problem.

--------------------
sixgoofykids.blogspot.com

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405

Icon 1 posted      Profile for lululymemom     Send New Private Message       Edit/Delete Post   Reply With Quote 
IMO we can always speculate why there are lingering symptoms after treatment. They can be attributed to damage done by treatment or they can be bacteria that still has not completely resolved. I think there is no sure fire way of knowing for certain. There is no test that tells you "okay now you are cured."

I think the danger comes in when people are encouraged to stay on antibiotics until they are symptom free for 2 months. That could literally take forever and, again, in my opinion really bad and dangerous advice. There are very few that are completely symptom free. As it has been discussed here, many still have some "symptoms" or "damage" even after remission is achieved.

In my heart I feel that people are being misled that total and complete symptom free remission is likely from chronic lyme disease.

--------------------
IGM 41 IND, 83-93+ IGG 31 IND,34 IND, 41++, 58+, 83-93 IND

31 Epitope test neg.

Bartonella henselae 1:100

Posts: 2027 | From British Columbia | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
raw vegan runner
LymeNet Contributor
Member # 30432

Icon 1 posted      Profile for raw vegan runner   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
lulu, I TOTALLY agree with you. If I had stayed on abx until I was *symptom free* I would still be on them, feeling awful, toxic and doing even MORE damage to my gut. Now, at least I can assess what it what, and try to deal with the damage done vs. symptoms that may be lingering, that may/may not be from *active* Lyme.

Many of us have Lyme/Co's AND other issues, which makes it hard to truly know what's what. I think that is the biggest challenge we face in all this is being able to figure out what is Lyme, and what is say...thyroid, or yeast or insert-malady-here.

Right now, I believe I am in some sort of remission. Mostly, bc the brain-numbing fatigue is gone. I can run 5-6m a day, recover fine and function like a reasonably normal person. BUT, I still have hedaches, temperature regulating issues, pain in some joints, gut issues, random nausea/vomitting...is that Lyme? Or, is it just what's left after Lyme...no way of truly knowing.

So, I treat this on a symptom basis rather than a disease basis and hope for the best. I feel much better OFF the abx than I did on, and simply have to accept that there is still some stuff needing to be dealt with.

Chronic Lyme Disease is exactly that- chronic. I don't know that those of us who have had this disease 10, 20+ years will ever be *symptom free* though I do believe we can be better, even well...if that makes sense. We will always have some sort of *souvenier* though, I fear...

Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011  |  IP: Logged | Report this post to a Moderator
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405

Icon 1 posted      Profile for lululymemom     Send New Private Message       Edit/Delete Post   Reply With Quote 
Absolutely, for long term chronics like us, treating on a symptom basis seems to work best. It does for me anyway. I still use natural abx to keep the bacteria under control and to keep other things at bay.

I was pleasantly surprised to see (in lymetwisters previous post) that the trend is turning towards alternatives rather than abx for long term.

--------------------
IGM 41 IND, 83-93+ IGG 31 IND,34 IND, 41++, 58+, 83-93 IND

31 Epitope test neg.

Bartonella henselae 1:100

Posts: 2027 | From British Columbia | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
thehause
LymeNet Contributor
Member # 21237

Icon 1 posted      Profile for thehause     Send New Private Message       Edit/Delete Post   Reply With Quote 
Can you be in remission but still suffer from nuero issues such as obsessions / compulsions / being 'fogged out'?
Posts: 372 | From west of the mississitty | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
raw vegan runner
LymeNet Contributor
Member # 30432

Icon 1 posted      Profile for raw vegan runner   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
thehause, I can only speak for myself but I feel like I am in a remission right now, and I still have headaches/mood *issues*/confusion and memory crap that was/is part of my Lyme. I have to think that damage was done from both the Lyme and the treatment that has left me with lingering issues. I am hoping to clear them up...

Here is the part that gets tricky, imo...

I was totally against antidepressants and pain meds the last 5 years during my active treatment. Reason being, until I had a Dr. who believed me, I did not want my symptoms to be blamed on *depression* etc. Now, that I know where I am at, and have a good Dr. I would be willing to consider other meds if needed, because I can sort the symptoms out...if that makes sense.

So, my point is, if you believe you are in remission and still have those symptoms, I would consider treating those symptoms as a separate issue(even though it is from the Lyme)Perhaps there is an herbal combo that would help, or even a low dose of some med that would aleviate some of these lingering issues.

Does this make sense? I am dealing with a sinus infection right now and my brain is full of snot... [Wink]

Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011  |  IP: Logged | Report this post to a Moderator
raw vegan runner
LymeNet Contributor
Member # 30432

Icon 1 posted      Profile for raw vegan runner   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
Six...GAH! I have been treated on and off for 5 YEARS! I hope it doesn't take that long! But, I suppose if I look at it in a more positive light...if you are consistantly getting better through that *recovery period* I guess that is a good thing [Smile]
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011  |  IP: Logged | Report this post to a Moderator
nefferdun
Frequent Contributor (1K+ posts)
Member # 20157

Icon 1 posted      Profile for nefferdun     Send New Private Message       Edit/Delete Post   Reply With Quote 
My analogy is your lawn covered in weeds. You spray out the mature plants but you will never get rid of all the seeds - which can be in the millions. You have to keep the lawn healthy so the weed seeds do not have a chance to germinate.

If you do go into remission but don't take care of yourself, you are much more likely to get sick again. So there is no return to "our old selves" in the sense that we can throw caution to the wind and eat whatever we want, not get proper rest or exercise.

I hope I will eventually get off the abx and use herbs to control things. I know now that I can't slip up. I have to eat healthy which means no sugar, no red meat, no processed refined foods and very few high glycemic foods.

But on the pessimistic side, I have read that dogs with Ehrlichia that was not treated in the early stages, often require antibiotics for the rest of their lives. That is main stream. What about people? Probably the same. And I have ehrlichia which I have discovered is a primary problem.

--------------------
old joke: idiopathic means the patient is pathological and the the doctor is an idiot

Posts: 4676 | From western Montana | Registered: Apr 2009  |  IP: Logged | Report this post to a Moderator
sixgoofykids
Moderator
Member # 11141

Icon 1 posted      Profile for sixgoofykids   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
Yes, raw vegan, it seems like a long time, but it does allow you to be more patient with the aftermath.

I had Lyme for over 30 years and am symptom-free. And now, my gut functions well, too .... GI issues had been ongoing.

--------------------
sixgoofykids.blogspot.com

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
map1131
Frequent Contributor (5K+ posts)
Member # 2022

Icon 1 posted      Profile for map1131     Send New Private Message       Edit/Delete Post   Reply With Quote 
Oh, believe me I don't go in tick known areas. We sold our lake home which is where I was infected in the first place.

Everyone thought I was just the unlucky one, besides a beautiful family dog Rusty of my sister and her family, also had lake home close to ours. Summer '99 Rusty and I went down.

Rusty had a bulls eye on his belly. The vet said Rusty had cancer. When we realized what a bulls eye was, my sister put Rusty on abx and steroids.

Vet said Rusty would die within 3 mths from this "cancer". Rusty went up and down for 2+ years and eventually the lyme killed him.

'03 & 04 my husband got lyme and co sick. 2 mths abx took care of him. So he thinks?

'05 I pulled 2 ticks out of me and another out of hubby. I hated the lake house. I saw ticks, not good times.

My husband got tired of working his butt off 6 weeks and some weekends at the lake. He wanted to sell. I jumped for joy, I thought I was leaving tick world behind.

I can't go to my sister's house in the suburbs(same sister)surrounded by woods and 3 dogs and 1 cat without being bite by something. Mites and fleas come running at me.

I refused to go into their theatre room again until it was professionally defumed. Seriously, that's how scared I was after a very bad attack by mites on me.

This sister has another dog that has been ill and going down hill since they built this house 3 yrs ago. I get so angry seeing this suffering dog. This dog is up and down and has arthritis. Sure?

I live in patio home community, mostly blacktop.
Suburbs too. A group of deer walk our community down the blacktop street and eat grass and plants at night.

My husband plays golf. Three times in the last few years I've found an embedded deer tick on me after his golf outings. They must think he tastes bad and get off as soon as I get in the bed and are happy happy happy. There's my favorite meal.

He says he doesn't go deep in the woods for his ball. He only walks the edge of rough areas. Sure?

I've tried to live in a world where I should be safe. I think all ticks are looking for me. I see ticks coming after me. They are running as fast as their little legs will carry them.

I'm not crazy. This is the my reality.

Pam

--------------------
"Never, never, never, never, never give up" Winston Churchill

Posts: 6444 | From Louisville, Ky | Registered: Jan 2002  |  IP: Logged | Report this post to a Moderator
thehause
LymeNet Contributor
Member # 21237

Icon 1 posted      Profile for thehause     Send New Private Message       Edit/Delete Post   Reply With Quote 
I got mine playing golf - I hear you.
Posts: 372 | From west of the mississitty | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
thehause
LymeNet Contributor
Member # 21237

Icon 1 posted      Profile for thehause     Send New Private Message       Edit/Delete Post   Reply With Quote 
sixgoofykids - You have been relieved of any neuro-issues? Are you 'normal' in your head?

I feel like I'm at a crux - I need a day of feeling better - a day of being "myself" or i need relief some other way.

I am in a lot of neuropathic pain and stress. I don't think "well". I can still perform on certain intelligence tests but my mind is just not up to performing deeper functions. This can't be permanent... I won't make it.

Posts: 372 | From west of the mississitty | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
triathletelymie
LymeNet Contributor
Member # 26456

Icon 1 posted      Profile for triathletelymie     Send New Private Message       Edit/Delete Post   Reply With Quote 
thehause...

I won't make it either...I am at a really dark place right now...8 weeks of IV doxy really plummetted my brain into the depths of BAD!

--------------------
? date of bite/no rash
10/09 symptoms, 4/10 diagnosed, after 6 mos. ER visits, tons of docs/tests
CDC+ 23/39/41/45/58/66/93
currently on oral plaquenil, doryx, rifampin, pyrazinamide, nystatin, numerous supplements

Posts: 718 | From Pennsylvania | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
thehause
LymeNet Contributor
Member # 21237

Icon 1 posted      Profile for thehause     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm about ready to take the easy way out... sad.
Posts: 372 | From west of the mississitty | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405

Icon 1 posted      Profile for lululymemom     Send New Private Message       Edit/Delete Post   Reply With Quote 
You need to take herbs that support the neuro issues.. They can make a difference. Magnesium and CoQ10 are necessities.. For my brain I take RNA (ribonucleic acid) and sublinqual Vit. B12.. There are many things that can treat mood disorders.. Please look into them. Pharmaceuticals are not always the answer.

--------------------
IGM 41 IND, 83-93+ IGG 31 IND,34 IND, 41++, 58+, 83-93 IND

31 Epitope test neg.

Bartonella henselae 1:100

Posts: 2027 | From British Columbia | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
thehause
LymeNet Contributor
Member # 21237

Icon 1 posted      Profile for thehause     Send New Private Message       Edit/Delete Post   Reply With Quote 
i take the same B12 and fish oil and vitamin c and alpha GPC and ALA and glisodin and Cysteine and vinopectine and aspirin and fish oil and piracetam and brocco max and folate and Trimethylglycine...

when do you raise the white flag?

Posts: 372 | From west of the mississitty | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405

Icon 1 posted      Profile for lululymemom     Send New Private Message       Edit/Delete Post   Reply With Quote 
Fish oil does suppress inflammation but in the long run, inflammation is a way of your body fighting infection. I personally would not want to suppress it.

--------------------
IGM 41 IND, 83-93+ IGG 31 IND,34 IND, 41++, 58+, 83-93 IND

31 Epitope test neg.

Bartonella henselae 1:100

Posts: 2027 | From British Columbia | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
thehause
LymeNet Contributor
Member # 21237

Icon 1 posted      Profile for thehause     Send New Private Message       Edit/Delete Post   Reply With Quote 
i could care less about bodily inflammation - i'm used to it.

i'm more talking about the inflammation and perfusion issues resulting from the 'thickened' blood and nerve tissue in my brain. those which you've maybe just tangentially referred to as "mood" related. I see it the other way. I am not having mood issues. I am having neuro issues which scare and frustrate me to the point of wanting to "QUIT". They are a byproduct of a situation not a real issue themselves.

Posts: 372 | From west of the mississitty | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
sixgoofykids
Moderator
Member # 11141

Icon 1 posted      Profile for sixgoofykids   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by thehause:
sixgoofykids - You have been relieved of any neuro-issues? Are you 'normal' in your head?

Yes. I no longer have any symptoms. I was severely cognitively impaired when I was sick and am fine now. I don't have the mood swings or rage any longer either. My memory is now normal. Etc.

If you haven't treated bartonella and/or parasites, if you're having those kinds of symptoms without relief, you might look into both, treating those two things helped me most with those symptoms.

--------------------
sixgoofykids.blogspot.com

Posts: 13449 | From Ohio | Registered: Feb 2007  |  IP: Logged | Report this post to a Moderator
lululymemom
Frequent Contributor (1K+ posts)
Member # 26405

Icon 1 posted      Profile for lululymemom     Send New Private Message       Edit/Delete Post   Reply With Quote 
quote:
Originally posted by thehause:
i could care less about bodily inflammation - i'm used to it.

i'm more talking about the inflammation and perfusion issues resulting from the 'thickened' blood and nerve tissue in my brain. those which you've maybe just tangentially referred to as "mood" related. I see it the other way. I am not having mood issues. I am having neuro issues which scare and frustrate me to the point of wanting to "QUIT". They are a byproduct of a situation not a real issue themselves.

I actually addressed the mood disorder to those who are suffering from it. I have dealt with this illness a very long time, and neuro issues have always played a part in my symptoms. It comes with the Bartonella infection. I will stick to what helps me. Seems it doesn't work for everyone.

--------------------
IGM 41 IND, 83-93+ IGG 31 IND,34 IND, 41++, 58+, 83-93 IND

31 Epitope test neg.

Bartonella henselae 1:100

Posts: 2027 | From British Columbia | Registered: Jun 2010  |  IP: Logged | Report this post to a Moderator
t9im
Frequent Contributor (1K+ posts)
Member # 25489

Icon 1 posted      Profile for t9im   Author's Homepage     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hi Jenn and everyone:

I believe it can be cured, it is my daughter who has Lyme and hopefully is almost over Babesia.

As most of you know the Lyme spirochete is the super bug main stream MD's worry about but our LLMD's know is here.

It does take a course of long term drug treatment. Minimun of two drugs including a cyst buster.

Of course we are not helped by main stream research as they've abandoned us so our LLMD's have to go by trail and error. Everyone is different.

Good luck and don't lose hope.

The conflicting data of course is confusing.

A spirochete report indicating the bacteria doesn't leave the tick gut until almost done feeding conflicts with the mice being infected in 15 minutes.

The mice study on persistent infection even with mice cured of symptoms. Of course this was with mono drugs and not going after the cysts.

I wonder if there are other ways to go about it besides the heavy drugs (worry about this all the time due to side effects) but have not really bought into some of the alternative treatments.

I naively thought our daugher would be cured by now (11 months in) but realize we still have quite a ways to go. You all know this. It takes longer, requires more time and resources but you can be cured.

Best,

--------------------
Tim

Posts: 1111 | From Glastonbury, CT | Registered: Apr 2010  |  IP: Logged | Report this post to a Moderator
thehause
LymeNet Contributor
Member # 21237

Icon 1 posted      Profile for thehause     Send New Private Message       Edit/Delete Post   Reply With Quote 
Lulu - sorry if that came across harshly. I'm frustrated and about at my limit. Maybe the mood issues exist?

I really need to get some resolution / improvement... This can't be how you have to live for the time you've got.

Posts: 372 | From west of the mississitty | Registered: Jul 2009  |  IP: Logged | Report this post to a Moderator
   

Quick Reply
Message:

HTML is not enabled.
UBB Code is enabled.

Instant Graemlins
   


Post New Topic  New Poll  Post A Reply Close Topic   Feature Topic   Move Topic   Delete Topic next oldest topic   next newest topic
 - Printer-friendly view of this topic
Hop To:


Contact Us | LymeNet home page | Privacy Statement

Powered by UBB.classic™ 6.7.3


The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:

The Lyme Disease Network of New Jersey
907 Pebble Creek Court, Pennington, NJ 08534 USA


| Flash Discussion | Support Groups | On-Line Library
Legal Resources | Medical Abstracts | Newsletter | Books
Pictures | Site Search | Links | Help/Questions
About LymeNet | Contact Us

© 1993-2020 The Lyme Disease Network of New Jersey, Inc.
All Rights Reserved.
Use of the LymeNet Site is subject to Terms and Conditions.