any good news?

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

2long4this
Regular Member


Date Joined Apr 2008
Total Posts : 37
   Posted 4/29/2009 12:44 PM (GMT -7)   
Is there ever any good news with lyme disease?
It seems like all I ever read is bad stuff and it seems like if you have lyme you're pretty much stuck like this.
People must recover. I just can't wrap my head around the idea that once you get bitten your life is over.
Because if that's the way it is, I don't know why I'm spending so much money trying to get better.
I realize it takes a long time, but I have been at this a long time. I just wish the news was more positive sometimes.
That would be a blessing. Might even help me get through the day.

ria123
Regular Member


Date Joined Aug 2008
Total Posts : 348
   Posted 4/29/2009 1:06 PM (GMT -7)   
Google Michelle On Lymes Disease and read her story. She is cured after 16 months of antibiotics.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 4/29/2009 4:08 PM (GMT -7)   
I think most people just don't come back and post when they are feeling good. They are out living their life and doing things. I had a good week about two weeks ago and that's what I did. I was out and about and just wanted to do everything. I've only seen a few people come back and post when they felt better. If you think about it, most things on the Internet are about bad things especially when it's a sickness or a disease. People usually only post and search when they are feeling bad.

There is hope and people do get better.
2003 symptoms started with very intense panic attacks and anxiety. Also had sound and smell sensitivities. Was in and out of the hospital from 2003-2005. Diagnosed with panic disorder.
2007 found an LLMD and was diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence. Muscle pain, joint pain, floaters, stiff neck, rib pain, slow thinking, brain fog, etc...
2009 went back to see LLMD. Diagnosed again with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start (starting slow and working my way up, Mepron(babesia), Ultram(muscle/joint pain), Thyro Complex 60mg(Thyroid), Probiotics ,Caproyl(intestinal candidas),Psyllium Powder(intestinal cleansing support),Bentonite Magma(absorbent aid for intestinal detoxification)
-Plus a ton of other supplements


nervoustick
Regular Member


Date Joined Jun 2007
Total Posts : 158
   Posted 4/29/2009 6:59 PM (GMT -7)   
Though I am still being treated after 4 years (extenuating circumstances of having heavy metals toxicity), I am so much better than the dark days. To quantify it, I would say I am about 80-85% back to normal. There is definitely hope--patience and perseverance are really the the only recipe I can advise as everyone reacts to the disease differently and responds to different treatment protocols.

Keep up your spirits as best as possible; you WILL get better.

John

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4306
   Posted 4/30/2009 5:22 AM (GMT -7)   
Hi 2long4this and everyone else,
 
Yes, people get better!  I am going on 4 years of being in remission from this disease after having it for 10 years.  It took me only 7 to 8 months using an alternative medicine protocol that put me into remission. 
 
I like to come back and post because I made myself a promise if I got better which I did, I would continue to help others as I know the pain and suffering...
 
Brain fog?  Oh yeah, I had severe brain fog, I could write a book on my brain fog!
 
I know many who are also better and I keep in touch with them as I became really good friends with these people..  
 
So please don't ever give up hope, okay?  There is a light at the end of the lyme tunnel.
 
Cheers!
Denise


It's all about the Immune System mixed with a large dose of Positive Thinking and Daily Detoxing   ~  Pay It Forward!!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 3 years:
 
 


JELAINEP
Veteran Member


Date Joined Sep 2007
Total Posts : 2017
   Posted 4/30/2009 6:15 AM (GMT -7)   
2long4this said...
Is there ever any good news with lyme disease?  rolleyes    Well, so far I got to skip the whole low rider blue jeans and T-back underwear craze, A-line tops and dresses, and babydoll tops that make everyone (even 2 year olds) look pregnant.
 
It seems like all I ever read is bad stuff and it seems like if you have lyme you're pretty much stuck like this.  rolleyes    I have been stuck like this for 9 years (this June).
 
People must recover. I just can't wrap my head around the idea that once you get bitten your life is over.  rolleyes    9 years and I still can't wrap my head around it either, but many states have decriminalized marijuana and I hear Illinois is looking into approving medical marijuana..... so it's not ALL bad.
 
Because if that's the way it is, I don't know why I'm spending so much money trying to get better.  rolleyes    The will of the human body/mind/soul to survive is amazing.  I think that's why I spend the money.... but, I'm very fortunate I have Medicare, CIGNA and a little money.  It's this nagging belief that "tomorrow" may be better than today.
 
I realize it takes a long time, but I have been at this a long time. I just wish the news was more positive sometimes.  That would be a blessing. Might even help me get through the day.  rolleyes    Refer to first answer..... or look at it this way, you get to live in pajamas and see how fast you can wear out a robe.
All the best -

Never doubt that a small group of thoughtful, committed citizens can change the world. Indeed, it's the only thing that ever has.  - Margaret Meade
06/00- The beginning, 08/01-LD positive, 10/01- Igenex and CDC LD positive, 10/02-LD positive, 11/03-LD positive, 10/07-Bartonella positive, CD57=3, possibly just tested positive for koseri IgA, Morganella motgani,Rocky Mountain Spotted Fever (RMSF - yay! another acronym), Typhus Fever, Klebsiella pneumonia, Proteus miabilis, Citrobacter i IgA, Hafnia alvai IgA, NKC4, Interleukin 4 (IL4), IL8, Immunobillin (IM01). 
Current Rx's 11/12/08: Wellbutrin 300mg, Paxil 60mg, Xanax 5mg, Acidophilus, Lyrica 600mg
"How much more can I take?", songhttp://www.youtube.com/watch?v=5gHiR1xeOSs


yaniv_naced
Regular Member


Date Joined Sep 2007
Total Posts : 134
   Posted 4/30/2009 10:32 AM (GMT -7)   
I live in an endemic area and have crossed paths with many infected folks.
Sadly, not one of them has made any lasting recovery. Most treat with high dose abx between 1 to 3 years. And it seems like within a few months after treatment ends, their symptoms start to creep back. Some of them have gone back on abx, and some just gave up and decided not treat anymore.

It's sobering but I believe that's the reality of chronic lyme - treatment will keep things in a 'holding pattern' but the spirochetes will always win in the end.

Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4306
   Posted 5/1/2009 5:57 AM (GMT -7)   
Hi yaniv_naced,
 
I'm so sorry that the people you know have not recovered, maybe antibiotics is not the way to go after a substantial amount of time?   There are so many alternative medicine protocols out there and lots of people including myself have done so well. 
 
I really don't believe spirochetes will always win, my view is to get one's body strong enough in order to kill bacteria on it's own.   I have not used any treatment protocols for  over 3 years now but I learned to keep my immune system strong, eat right, exercise (very important!), and daily detoxing.  Exercising is one way of detoxing because not only do you sweat out toxins depending on the exercise routine, but also getting lots of oxygen inside the body that lyme bacteria do not like, plus it makes one feel good! 
 
I understand that many are not strong enough to exercise just as I wasn't when I was really sick so I first tried doing yoga and light stretching and eventually I got to the point where I was able to do aerobics. 
 
There are many choices out there, I believe if one is not getting better on their current treatment protocol then try something else.    Sometimes we just have to become our own advocate and follow our gut instincts.  
 
Don't ever give up hope, okay?
Denise

It's all about the Immune System mixed with a large dose of Positive Thinking and Daily Detoxing   ~  Pay It Forward!!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 3 years:
 
 


ria123
Regular Member


Date Joined Aug 2008
Total Posts : 348
   Posted 5/1/2009 12:07 PM (GMT -7)   
Deejavu
I sent you an email did you ever get it?

hopingToFindCure
Veteran Member


Date Joined Nov 2008
Total Posts : 759
   Posted 5/1/2009 4:53 PM (GMT -7)   
Deejavu Denise,

What protocol?

I cannot stand the side effects of antibiotics another day, but am concerned about my swoozy head and need help. Otherwise coping much better w/o the fatigue massisve dosing of abx has caused.

CajunGrl
Veteran Member


Date Joined Mar 2009
Total Posts : 4717
   Posted 5/2/2009 1:03 AM (GMT -7)   
LOL Jelaine. I've worn out several pajamas and robes. I think my bed and sofa are in for it next, LOL.
2003 symptoms started with very intense panic attacks and anxiety. Also had sound and smell sensitivities. Was in and out of the hospital from 2003-2005. Diagnosed with panic disorder.
2007 found an LLMD and was diagnosed with Lyme. Didn't start treatment.
2008 symptoms came back with a vengence. Muscle pain, joint pain, floaters, stiff neck, rib pain, slow thinking, brain fog, etc...
2009 went back to see LLMD. Diagnosed again with Lyme plus co-infections....Babesia and Bartonella.
Illnesses:-Chronic Lyme Disease,Hashimotos Thyroiditis, Ulcers, Hypoglycemia
Medications:-Biaxin 250mg to start (starting slow and working my way up, Mepron(babesia), Ultram(muscle/joint pain), Thyro Complex 60mg(Thyroid), Probiotics ,Caproyl(intestinal candidas),Psyllium Powder(intestinal cleansing support),Bentonite Magma(absorbent aid for intestinal detoxification)
-Plus a ton of other supplements


dorit
Regular Member


Date Joined Nov 2008
Total Posts : 375
   Posted 5/2/2009 3:50 AM (GMT -7)   
My ACA got much better with detoxing and my whole alternative approach!! The dermatologist told me that its uncertain if this ever goes away even with heavy abx treatment but also said she knows about some who had miracle results with alternative treatment / detoxing. You can still see those areas on my skin but it now looks like healed skin after large scabs - not like the horror before!!
So - hey, there is so much hope !!!! Take care, dorit.

MarriedtoLymeinNJ
Regular Member


Date Joined Sep 2007
Total Posts : 273
   Posted 5/2/2009 6:37 AM (GMT -7)   
My DD is doing *great* I know it is easier for kids to bounce back. We think she was born with Lyme and was 9 when she first started treatment. She has been symptom free for 4-5 months and feels great. She is slowly weaning off of abx, down to just 250 mg Biaxin a day. She is also on Burbur and Banderol/Cumanda herbs (Cowden) and HH capsules (Zhang)

Her llmd feels that continuing abx for 6 months after symptoms are gone is the best approach, plus support of herbs.

I look at her and feel that their is hope for the rest of us.
Chris: Diagnosed Lyme, Chronic Mono
Married to Lyme in NJ aka Gary: Lyme, Bartonella
Mom to Scott: Lyme, Babesia, Bartonella
Mom to Caitlyn: Lyme, Bartonella
My Blog: http://faerywings.wordpress.com/


Deejavu
Veteran Member


Date Joined Aug 2005
Total Posts : 4306
   Posted 5/2/2009 6:57 AM (GMT -7)   
Morning all,
 
Ria123, yes, I e-mailed you back.  Hope this helps!
 
hopingTofindCure,
 
What worked for me was Dr. Jernigan's protocol.  I used his botanicals (he grows them himself and tests them), as well as lots of detoxing which I read in his book called "Beating Lyme Disease".  I followed his 1st edition book.  He came out with an updated book that includes biofilms which I have but have not read the entire book yet (don't have time!)... 
 
If you want to e-mail me about your swoozy head (good words!) I can give you some advice about that and how to clear that up.   Yes, there are some antibiotics that do cause bad side effects.
 
CajunGrl and Jelaine,
 
Oh golly, I remember my days of only wearings PJ's and robes.  I lived in them for years when I was sick.  I also would would throw a coat over my nightgown (in the cool weather) and go to my nearby drive-through Dairy Barn to buy eggs so I wouldn't have to get out of my car.  What memories!
 
Dorit, that's great that your skin is clearing up!  Yeah, detoxing is so important..  I remember when someone first talked about detoxing, I thought they were nuts. 
 
MarriedtoLymeinNJ, that's great news about your daughter.  And yes, don't ever give up hope, hang on to "hope", it's a beautiful feeling.  :-)
 
Denise
 
 
It's all about the Immune System mixed with a large dose of Positive Thinking and Daily Detoxing   ~  Pay It Forward!!
 
This song is about my years with chronic lyme since 1995 and being in remission for over 3 years:
 
 


nefferdun
Veteran Member


Date Joined Feb 2008
Total Posts : 900
   Posted 5/2/2009 7:42 AM (GMT -7)   
Thanks for posting everyone about finding recovery and not giving up hope. I think there should be a permanent sticky on here where people who have recovered can leave messages for the rest of us that struggle. Something easy to spot every time we come on so that we know there is recovery because sometimes you really do believe you are fighting a losing battle. I am going to research Dr. Jernigan's protocol next. I also believe you cannot take abx forever - at least I sure can't. My body just can't tolerate it. I believe we have to make a vow with ourselves to be healthy in every way possible; to take herbs and supplements that help boost the immune system, to eat only health promoting foods, get plenty of sleep and to exercise. I have my ups and downs but I am much better than I was a year ago.

Martha's Vineyard
Veteran Member


Date Joined Jul 2008
Total Posts : 1119
   Posted 5/2/2009 11:02 AM (GMT -7)   
hey two long,
I hear you.
I have gotten better and got my 5 year old better as well.
I know of others on her that have also gotten better.
To help you understand one thing for sure. My strong opinion. Is that abx drugging made me and my kids much sicker.
If you go out and buy a book on Auto Immune disease. And read through them. MS, Lupis, cronic fatique, depression...etc. You will see that you have just about every single one of them.
I did.
Blind, suicidal, wanting to quit. Altzhemiers...etc.
Out of work, no friends. Pain....lost.
And taking tons of abx and getting worse.
So my thought is this. 95% of the population has herpes. Some people it really bothers, others it does not.
I lost my virginity at 23 and first guy gave it to me. It bothered me once. Once I got lyme is was bothering me all the time.
My boyfriend who had a stressful job had problems with it all the time. Herpes and Lyme, I think that everyone does or will have both.
There is no way to not get bitten by a mosquito.
Plus you can get lyme during sex.
So.....the people who are sick and getting worse. Are people who's immune systems have been kicked back. Due to many things, stress...poor diet....both of those applied to me. Even though I look healthy, I did not eat much, wanting to stay skinny, and from modeling...
So now that I am fertilizing mysef daily and sometimes twice a day. I am fine.
I know of many others on here who are doing better.
I must admit that the battles that go on, on here when some are trying to get there "sucessful stories" out piss me off greatly.
I must also say that once you get better and every time you come back on it is the same old thing over and over. Everyone is drugging with abx and not getting better after years of it and whinning about it and will not listen to other ways.
Sorry if that comes off as a witch. I can me....lol.
But others on here have in fact gotten better with Dr. J. And I did not do his treatment, but I do no personally people that went to him and they think that I am some sort of god for it.
For him.
I did the heavy abx and I lost my mind. And my kids. I am all better now.
I have posted a bunch and too much about my treatment. Maybe you are right about the new lymies who are flat on their backs and having such a hard time. It took me forever to find this forum in the first place. I was lucky in that I had the resoures to travel the world and have the best Dr.s and not have to worry about money. But.....I did not find out about envita on here. A stranger told me about it.
So....neffer above knows what she is talking about...and Deja vu...had been great for such a long time...I would listen to her..plus she is a sweetie.
And so on.
Me I am a pain in the butt...and ever so provacative...lol...vegan gave me that name....love it.
But you can get better...you just need to get off the road you are on now. Pull over and get some better directions. :>)
2004 in Martha's Vineyard me and my two daughters then 11 mos and 6 all got Lyme Disease. This was only known to us because we found the tiny ticks on us and we got very ill. My dog also got lyme and he went lame.
We have fought it for 4 years to no avail.
We all got it again this summer is Texas.
I am now in treatment in Scottsdale Arizona at Envita.

"The eyes cannot see for for what the mind does not know."

New Topic Post Reply Printable Version
Forum Information
Currently it is Friday, December 15, 2017 6:55 PM (GMT -7)
There are a total of 2,905,972 posts in 318,906 threads.
View Active Threads


Who's Online
This forum has 158250 registered members. Please welcome our newest member, 4som1.
351 Guest(s), 10 Registered Member(s) are currently online.  Details
Kent M., MD23, js100, 1000Daisies, The Dude Abides, Skypilot56, Mickey Childress, TroubledTurds, momem3, Goat0724