posted
I am feeling very discouraged and depressed after seeing how recent research is being interpreted as meaning antibiotics only work if taken continuously, otherwise relapse is certain.
Does anyone know of success stories treating neuro lyme and babs where the patient actually was able to get off the antibiotics (in my case ORAL) and return to their previous life.
Or am I doomed to live with this !@#$ and meds the rest of my (reduced quality) life?
LM
[ 12. October 2007, 10:49 AM: Message edited by: LocalMan ]
Posts: 212 | From Eastern CA | Registered: Apr 2007
| IP: Logged |
Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I know there are others who have successfully treated Lyme and babesia and
Are now symptom free.
Hang in there. When you are at the bottom the only place to go is up.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
| IP: Logged |
posted
LocalMan, I dont have an answer for you right now but hope to have one for you shortly. I have had great results on abxs and supp. still get very tired in the afternoons. Just dont know what to expect if halting my treatment, and will let my LLMD make suggestions at my next appointment.
Posts: 108 | From maryland | Registered: Sep 2007
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
NO it does not go on FOREVER!!!!!!!
YES some people get full remission!!! Even people sick YEARS and YEARS.
Some other people DO need "maintenance antibiotics" or they will relapse though, but can have great quality lives again!! And honestly, MEN often seem to get full remission more than women in my experience- maybe because of the findings re Babesiosis & females? I don't know... but about half% of the guys who have come to our group get into full remission while nowhere near that for women!!! So cheer up- you're a guy*)!!!!!!!!!!!!!!!!
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
I was treated with an 8 week course of amox 4 years ago, thought I was all better a lyme-free, and now starting last Jan I relapsed big-time.
I'm in my 3rd week of zithro/mepron and just added plaquinil, but my neuro pain is going nuts with stabbing electroshots in my faces, ears, toes and appendages, along with the shakes. Of course the connective tissue pain is right there too.
If anyone has any actual case histories of neuro-lymies with similar symptoms and their successful treatment, I would love to see it.
My llmd's "I think I can help you" along with my hope is taking a beating with all the contradictory study interpretations I've been reading lately.
But your words help.
LM
Posts: 212 | From Eastern CA | Registered: Apr 2007
| IP: Logged |
That's my problem..I don't WANT to learn more...i just hate this !@#$ and I want my life back!
I also can't spend too much time on the internet or my depression just worsens...my wife accuses me of obsessing...but then she doesn't have it, does she?
to add to the irony or whatever you call it...I have no words...what she gave me for my birthday..."top 10 treatments for lyme disease". now THERE's a birthday to remember!
LM ps. scuse my pity party. I hope we all get well together.
Posts: 212 | From Eastern CA | Registered: Apr 2007
| IP: Logged |
David95928
Frequent Contributor (1K+ posts)
Member # 3521
posted
You know, there are worse things than being on maintenance antibiotics, like not being on mainetnance antibiotic when you need them. There are worse things than Lyme disease, by far, type I diabetes for example not to mention cancer, COPD, schizophrenia... At the current level of knowledge and technology, I am on maintenance antibiotics and have managed to incorporate that into an otherwise pretty normal life.
-------------------- Dave Posts: 2034 | From CA | Registered: Jan 2003
| IP: Logged |
lymeinhell
Frequent Contributor (1K+ posts)
Member # 4622
posted
I was neuro lyme and Bart... maybe not the same, but still have my life back.
It DOES get better, but it doesn't happen overnight.
You need to treat all the layers of your illness - coinfections, parasites, fungi, heavy metals - restore your mineral levels, and restart your life so you don't end up on the same path again.
So while lifelong antibiotics may or may not be a reality, changing your lifestyle for good most surely will.
-------------------- Julie _ _ ___ _ _ lymeinhell
Blessed are those who expect nothing, for they shall not be disappointed. Posts: 2258 | From a better place than I was 11 yrs ago | Registered: Sep 2003
| IP: Logged |
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Like David said_!*)*)!*)!
I am so grateful to be on maintenance abx and to be symptom free and able to enjoy life. I can walk, run, WORK full time (if I wanted to, am being a stay-at-home Mom right now, love it)...
I have a great life.
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
| IP: Logged |
posted
Thanks for the encouragement and the success story...I am very happy to actually see one real solid story!
I wish I could make time for more of the alterntive stuff between all the antibios and neurontin etc...I can barely keep them a straight as it is...I am taking Theralac too, just 1xday..how do you guys time all that stuff?
re: previous lifestyle/health...I've always considered myself pretty darm healthy, and at the very least very fit (competitive distance runner last 30 years)...I've always eaten relatively well, drink tons of fluids, taken vitamins, etc...my only bad habit was drinking beer...was. Prior to this !@#$ my only sicknesses were stuff the kids brought home. HA!
LM
Posts: 212 | From Eastern CA | Registered: Apr 2007
| IP: Logged |
sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
You'll get better.
I've had it for 35 years and seem to be finished with babs treatment ... I'm on one Malarone per day just to be sure.
Now we're working on Bart and Lyme, so still a long way to go, but it's great not having the babs symptoms.
Read through the success stories!!
I believe Lymetoo is several years into remission from Lyme and babs.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
| IP: Logged |
Dave6002
Frequent Contributor (1K+ posts)
Member # 9064
Department of Medicine, Columbia University, New York, New York 10032, USA. [email protected]
PURPOSE OF REVIEW: Many autoimmune rheumatic autoimmune disorders predominantly affect women. Sex hormones, in particular estrogen, can influence CD4 T-helper development and function. We highlight recent studies that begin to provide insights into the mechanisms by which estrogen modulates CD4 T-cell development and function, and thus potentially contribute to disease pathogenesis. RECENT FINDINGS: High levels of estrogen can lead to thymic atrophy. Recent studies showed that this phenomenon results from effects of estrogen at multiple stages in early T-cell development. Estrogen is also known to affect mature CD4 T-cell function, and, in particular, their ability to produce selected cytokine profiles. The mechanisms by which estrogen can exert these effects were also recently explored and shown to include effects on expression of critical molecules known to be involved in these processes. SUMMARY: Dissecting the molecular pathways employed by estrogen to modulate CD4 T cells will be critical in elucidating the manner by which estrogen exerts its effects on this compartment. Given that cell type specific differences underlie the ability of many hormonal therapies to exert tissue-specific estrogenic or antiestrogenic activities, this knowledge will be crucial to further exploitation of hormonal therapies in rheumatic autoimmune diseases.
PMID: 17762604 [PubMed - in process]
Posts: 1078 | From Fairland | Registered: Apr 2006
| IP: Logged |
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Hi Localman, I have many people email me through my site and hear many stories. Many have gotten well on oral antibiotics alone.
One story in particular was about a college age student w/ neuro Lyme, basically "cured" by Biaxin, according to his mother. He was in a mental institution, misdiagnosed until his mother fought the Md's that he had neuro Lyme. He was tested and certainly did. He was treated for LD and within 2 years was enrolled and attending college living in a dorm, living normally again.
Yes, people get well, statistics say anywhere from 70% - 95%. The odds are with us.
Time, 3-5 years on average. Obviously an average means some less time, some more.
Some people though will need maintenance abx to keep them feeling well, possibly long term.
I know that one rule is to not stop treatment (even if you feel better) until your CD57 is around 200. Dr. Burrascano says relapse is unlikely if your CD57 is at this point.
I have had many neuro symptoms, very painful. I was tested for viruses and had several active viruses, which can attack the CNS. I was put on Valtrex for one year and I am happy to say they have gone dormant and many of my neuro pain symptoms are gone.
I always encourage anyone with specifically neuro pain to be tested for active viruses and to get on medication that stops replication. The viral co-infections are often overlooked, but can cause excruciating pain.
Lastly, exercise. I started with just stretching everyday, until I learned that when I would break a sweat, I literally felt better. I don't know why, but attribute it to possibly detoxing, sweating is a great detox, it also gets oxygen & warmth throughout the body(spirochetes cannot survive oxygen or heat). On days I thought I would die were the days I would especially get moving. I'd get on the treadmill and walk and walk. It may not work for everyone, but strangely it really helped me. Make sure to ask your LLMD about exercise and what would be good for you. Dr. Burrascano says that one can remain on abx forever but will never get well without exercise.
I find it amazing how we all just want our life back. We really don't know what we have until it is gone. Having health again...I will kiss the ground daily and thank God and NEVER take a pain free day for granite.
For now, keep positive, you aren't alone, you will get there...believe that, it just takes time, time, time.
Please ask your wife that when you are living with a severe illness 24/7, waking up to it daily, how you do NOT become obsessed? If she had cancer (which this is comparable to) would she become obsessed?
A smart lady once told me, you don't get Lyme, until you get Lyme. Hopefully your wife won't get it next. I followed straight in my husbands shoes.
I 'feel' your pain literally! I'm neuro, babs, bart and the collection. I've had many moons of IVs - now on orals. I am counting on a full recovery but it is sooooo difficult to stay optimistic, particularly without any real pain relief.
So the reason for my reply - Lyrica and Lamictal. I'm not the drug pusher type BUT these 2 drugs addressed ONLY what they were supposed to and I was able to finally sleep, get rid of the major 2 yr old headache, etc. Terrible burning.....you've heard or felt it all.
They are meds that you build up to an effective dose as they tend to make you drowsy. Having been dx'd in the past with MS & Fibro, I've had my share of stray arrows and had to be convinced by my LLMD that these were worth taking.
You need to get rid of the pain so you can heal - not so you can live your life harder. Be kind to your body. Hard one for me to learn.
All the best, Robin
Posts: 47 | From morgantown, wv | Registered: Feb 2007
| IP: Logged |
posted
Wow. Those are some great and thoughtful responses. Now I remember why I came here in the first place. You guys (gals) are great. I'm still not straight on who is who, but then again I'm not straight on a lot of things these days.
I should probably do a separate post, but...since I have some of your attention,
Nerve Pain and Tremors: what is your opinion of neurontin vs lyrica? I have seen lyrica mentioned a lot but sounds like it has a lot of side effects? My nerve pain and tremors are back with a vengeance right now...I pray that it is herx...and it has me close to freak-out stage. llmd did not want to monkey with switching and said to ask primary md...he is very non-ll.
Connective Tissue Pain: I continue to dose on IBU for shoulder (rotator cuff) and middle back (thoractic disc) and achilles tendon pain...oh yeah and the neck stuff. anyway, I did some naproxen and vicuprofen but IBU remains my deal.
Exercise: yes I am still running, at much less intensity than I ever imagined, for 40-60 minutes most days...it definitely helps my state of mind more than ever when I can get my sorry *** out the door. I do however seem to get more nerve stuff later onafter running, at least lately. I hope it's herx and that the exertion itself isn't causing it. I am running nowhere near as hard as I 'normally' do...no speedwork at all.
My overall training (including strength and speed) has taken a precipitous plunge from normal/average. Then again so has everything else I 'normally' do...from mowing the yard to splitting firewood.
OK I just remembered my last (!) question...
Herx: how do you know when a herx is a herx and not your body just plain breaking down? THe nerve stuff, ok maybe, but the disc and shoulder stuff too? I don't know if it matters, since there's no way I'm going to do cortisone or surgery, but just to know if all the PT-type stuff I'm trying to do is just in vain.
OK this is probably a real yawner for most of you so I'll quit and go stretch.
Thank you so much for your input and ecouragement. Yes I have trolled success stories but at last glance there were not many, or at least not many I could relate to. Maybe I need to look closer.
Today feels like a rough one but you remind me I gotta keep going.
thanks again to all of you LM
Posts: 212 | From Eastern CA | Registered: Apr 2007
| IP: Logged |
I have not taken neurontin so I can't compare my experience with Lyrica. So far, I haven't had any of the side effects. But then, who could tell.
Detoxing helps with the pain and I also see a really gentle and good chiropractor every 2 wks.
She always has a lot to do in my neck and I feel so much better after she has worked on me. I think it helps with the detox and allowing my body to function properly. Fighting these diseases is very tough on a person.
I have many old injuries, 25 yrs ballet, a lifetime of horses and lots of gyms - and now I can hardly walk up the stairs without getting dizzy - but...
I have also had a very successful acupuncture treatment that (I think) helped stabilize my blood pressure.
I've read on this forum of success with massage techniques and I think that would be worth a try, particularly lymphatic drainage.
As far as what is a herx, I know that mine are an intensity of my old sx that may not have been around for a while. Sometimes a new one joins in. Rest and detoxing really help. I don't take any otc pain relievers.
When my immune system kicks up before I start a cycle of abx is when I feel the worst. I would almost rather have the herx. Feels like a terrible flu with the spinal ache, etc. I definitely rest then - want my immune system to win a few of the battles.
After 24hrs on abx - life is good, then after a couple of days - herxes hit. I'm good a couple of days after I stop the last abx in the cycle and feel almost normal for about a week - then it starts again.
I am progressing throughout this process - I can type, read, write, do math, not get lost, speak, remember words, improved vision, recognize some people, hold my bladder (embarrassing), almost normal use of my hands, feeling in my extremities is nearly uniform, no more cold wet spots on my arms and legs (still on my scalp), enjoy music and sunshine.
I can walk & turn without losing vertical hold IN HEALS, haven't tried dancing but it is my goal to dance with my husband at the holiday parties - I can file my own nails, almost prepare an entire meal, still can't take care of the house, I'm starting to ride my horse at a walk....And I'm told I look great.
I have decided to give up my real estate job (after just one more contract...) and concentrate on getting better. I don't want to relapse.
I still have difficulty with many normal things but I focus on the improvements. My mind isn't all the way back - I'm not smart anymore. I don't understand the books I used to like and I can't read a 'grown up' novel. I can't follow some movies but I can follow lighter ones and sitcoms, etc. So there are can't do YET's. I will be fluent in French & German again.....the list is long.
There was so much that had gradually drained from my life and I just accepted because that's just how it goes with MS and Fibro.
Thousands of dollars worth of abx, LLMDs and about a year later and I am better than I have been for 10 years - except that I am 10 years older....I am alive. I know that I would be dead by now without my LLMDs.
Yes, there is recovery and it is worth every herx and crater in the road, every dollar borrowed and spent.
Read everything you can on detoxing, drink lots of good water (add lemon - helps), do everything you can to improve the quality of your sleep and rest before your body tells you it is exhausted.
I wish you all the best, you've been sick a long time, it will take time to get better. Savor every moment you have with a friend or loved one, it helps.
Robin
Posts: 47 | From morgantown, wv | Registered: Feb 2007
| IP: Logged |
posted
Nerve Pain and Tremors: what is your opinion of neurontin vs lyrica?
I have a friend who swore by the lyrica, but eventually had side effects. I have taken Neurontin for the pain of shingles, which is severe nerve pain, and it really worked. Not only did it help the pain, it allowed me to sleep!
Connective Tissue Pain: Liquid advil is good More treatment is even better Some swear by acupuncture
Exercise: Exercise with caution, especially if you feel worse afterwards. As you continue your treatment, you will see your body aches and pains improve, and you can gradually work up your endurance.
Herx: Most will tell you that a herx is an exacerbation of your symptoms and you feel worse...a lot worse sometimes! May cycle every 4 weeks or so, or you might find that as you start treatment you may have a continuous herx for as long as a few months. Then you will begin to have a really good couple of days, and whammo, you are worse again.
You have to remember that more treatment will knock your germ load down and you will find the worst symptoms abating. Keep a journal...write down your complaints daily. In a month you can look back and realize that you no longer have certain complaints.
It does no good to rant and rave at this disease. I think once you accept the fact that it will take time, you will have more patience with your situation.
It is easy to obsess about this nightmare, but it is not a disease for chickens! Much patience and fortitude are required...and an acceptance of the fact that you cannot do what you once did...until you are further down the road.
You are lucky in one sense, because you sound young and have been physically fit up to now. It is tough to find that your body is letting you down, but your body is under attack by a serious infection!
Wishing you well. Check out thebetterhealthguy.com
some advice from a 70+ grandma
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
| IP: Logged |
posted
Thanks for all the great posts...and Pony (Robin was it?...how's that for short term memory? what memory?) the insight into your life.
I am trying very hard to keep it together at work...I have a pretty technical job...but it is a struggle to say the least.
I am very slowly coming to accept that I have this !@#$....as you can tell the anger is still there too. I have a hard time keeping the learning going with my mental state and the demands of my family and job. But I will keep trying.
I find myself forwarding internet info to family and friends, hoping they will somehow digest it for me...when in fact they are tired of reading about it, can't relate, or just plain don't care.
I forget what else I was going to say, maybe I'll edit this later. Something about Babs, shaking, pain, neurontin.
LM
Posts: 212 | From Eastern CA | Registered: Apr 2007
| IP: Logged |
Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
Local Man,
I discovered what I thought was connective tissue pain was actually referred pain from other muscles. The muscles in my upper back and thoracic area are so tight, they refer pain to my hands and wrists. That pain appears to be tendon, but isn't.
In my case, Zanaflex has helped that pain because it impacts the pain signals and relaxes the muscles. I also use vicodin when I need to.
To go back to your original reason for posting this topic, remember that the studies you are referring to only look at 3 months of antibiotic treatment. Maybe the results would be very different if they looked at 6 months, or a year...
-A
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
| IP: Logged |
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
| IP: Logged |
5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
posted 14 October, 2007 11:12 AM -------------------------------------------------------------------------------- localman said:
****yes I am still running, at much less intensity than I ever imagined, for 40-60 minutes most days***
Hi LocalMan
holy smokes! Thats really alot better than most of us. I could not run that much or far if the devil himself where after me
For me tx has gotton alot of my symptoms into remmission, but unfortunately I had gone sooooo many years in the beginning without treatment. I can only have hope now, after 3/4 of intensive treatment, that my rife & supps can hold it there. I would preferr to take a maintance dose of abx but my stomach is till not so good.
So far the rife is holding the worst symptom, neuro-lyme....
If you are chronic like I am ~ (Not newly infected) I firmly believe that once you get into remmission if you can find a way to "hold the progress" You can have a happy life
Blessings Dana
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
| IP: Logged |
posted
Thanks I don't know if I can keep running, but I sure as hell am gonna try...I hope it's not making the neuro stuff worse but so far it's been worth the mental and spiritual benefit..at least so far.
As far as the Devil Himself chasing me...I believe he is..and that's what is keeping me moving...for least for now.
Thanks again for the thoughtful insights. I am going to try to get a decent massage this week and will continue with my PT exercises...
I wish I could figure out the supplement thing better but the abx and pain meds are about all I can juggle now. Do the rest of you struggle with that?
LM
Posts: 212 | From Eastern CA | Registered: Apr 2007
| IP: Logged |
posted
Good point Nan. At least some of my work can be done at home...but it takes a lot more than a blackberry...I just need t get some of the details worked out, such as network connections and large file servers...and the fact I'd want to be out laying on the trampoline most of the time!
LM
Posts: 212 | From Eastern CA | Registered: Apr 2007
| IP: Logged |
posted
or an email reply stating "I'm on the job...just asleep or running".
LM
Posts: 212 | From Eastern CA | Registered: Apr 2007
| IP: Logged |
Itsy_bitsyone
Unregistered
posted
Man...keep running. If you can no longer run, walk.
Exercize is one of the best ways other than the meds to keep the demon at bay.
You will remain functional as long as you keep moving. Remember, the key is balace your exercize with rest. BOTH are equally important. Once you become sedentary, its hard to come back for that. I kept this disease at bay and dormant for almost a decade by staying active, even before I knew what I had, even after having acute symtoms that I was never treated for for 15 years prior. Even so, the times of active disease from childhood were NOT all that bad, and very self-limiting until I gave birth, because I stayed very active for most of my young life.
You are in a good position to get better because you aren't sedentary, and chances are you will be maintain being better as long as you keep moving during and after treatment.
IP: Logged |
I just made the mistake of googling babesiosis...I hadn't done that in a long time...and the first article I see says "significant mortality"...now how's that for a pick-me-up?
The anxiety and depression of this stuff is not to be underestimated...I seem to remember being upbeat not too long ago...boy is that a fight now. Like you said and I know in my head working out (and resting) helps a lot...gotta hold that thought.
argh.
LM
Posts: 212 | From Eastern CA | Registered: Apr 2007
| IP: Logged |
posted
Maybe you should stop googling. Anxiety is not good for us!
Babesiosis does cause mortality on occasion, but only in old people like me. I licked it so I could defy the odds!
-------------------- nan Posts: 2135 | From Tick Country | Registered: Oct 2000
| IP: Logged |
map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Localman, patience my dear patience. I see you are learning the meaning of the that word. It's best to use anger from this *%^! as energy to learn everything you can.
I also found it's sometimes one step forward, two steps back. But that is truly the process one seems to do when trying to rid the body of some different toxins, not just lyme & so mentioned co-infections.
It truly does get better, just not fast enough for most Type A....get 'er done now folks.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
| IP: Logged |
posted
Thanks map. I'm gonna do my best to stay positive. I felt like I was full of radiocative waste yesterday...so far a bit better today. So far.
Boy this stuff really works your psyche...
LM
PS > my llmd rx'd a liver test after 1st month, I am looking fo the script...but what's the point?
Posts: 212 | From Eastern CA | Registered: Apr 2007
| IP: Logged |
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,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[Smile]](smile.gif)
![[hi]](graemlins/hi.gif)
![[bonk]](graemlins/bonk.gif)
![[Wink]](wink.gif)
![[Roll Eyes]](rolleyes.gif)
![[Eek!]](eek.gif)
holy smokes! Thats really alot better than most of us. I could not run that much or far if the devil himself where after me 
Printer-friendly view of this topic