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 » Does anyone get better after 4 continous years of treatment for lyme and babesia?

 - UBBFriend: Email this page to someone!    
Author Topic: Does anyone get better after 4 continous years of treatment for lyme and babesia?
Katrina
LymeNet Contributor
Member # 15236

Icon 1 posted      Profile for Katrina     Send New Private Message       Edit/Delete Post   Reply With Quote 
I am curious. Does anyone ever really move on past all these things and get better after lengthy treatment? It seems the only success stories are those that are caught early. I have treated for 4 years.

I was wondering since I have been treating for so long.

Hoping for some good news!

Posts: 219 | From Michigan | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067

Icon 1 posted      Profile for seekhelp     Send New Private Message       Edit/Delete Post   Reply With Quote 
I've only treated for 3 months. I don't think I could go 4 years though! UNLESS, I saw improvements that consistently happened AND they remained.

After four years, I would start to wonder if Lyme/co-infs aren't the culprit?

Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
gemofnj
Frequent Contributor (1K+ posts)
Member # 15551

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

That is really a shame you cant seem to improve. Have you made a symptoms list and logged them so that you can tell if you have improved on various treatments?

Maybe you could pin something down more difinitive that showed SOME improvement along the way.

There are other treatments to consider:

http://tinyurl.com/5j8fow

If you read this link from Dr. Burrascano, the top lyme doctor in the USA, it help you to discover other ways to get better.

http://www.ilads.org/files/burrascano_0905.pdf

He recommends that excercise and boosting your immune system is a must!

And other pathogens to consider.
http://tinyurl.com/593cmk

Perhaps you can discuss them with your doctor, or maybe you need to change your LLMD.

Good Luck

Posts: 1127 | From atlantic city, nj | Registered: May 2008  |  IP: Logged | Report this post to a Moderator
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780

Icon 1 posted      Profile for Vermont_Lymie     Send New Private Message       Edit/Delete Post   Reply With Quote 
I have met people who got better after 4 years of treatment, including one who switched llmds and felt like that helped, as that doc used a different set of abx.

You should read Pam Weintraub's book "Cure Unknown" which describes a young woman who got well and off abx after 8 years of tx!

The people who seem to take longest are the ones with late stage untreated lyme plus multiple co-infections who had gone untreated for years.

But my llmd has seen even those people get well if they treat appropriately and for a long enough length of time.

There seems to be alot of variability, and there are people with late stage lyme who get well after a much shorter time, a year or so on abx. I keep getting better, after more than 2 years in treatment.

I guess the point is that it is impossible to predict how long it may take a person. Lots of folks get better from babesia with 5 months of treatment, but many need longer treatment.

[ 30. November 2008, 11:57 AM: Message edited by: Vermont_Lymie ]

Posts: 2557 | From home | Registered: Aug 2006  |  IP: Logged | Report this post to a Moderator
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067

Icon 1 posted      Profile for seekhelp     Send New Private Message       Edit/Delete Post   Reply With Quote 
I pray it doesn't take me 8 years or I'll be living in a cardboard box on a street corner begging for a slice of bread. [Frown] That's so demoralizing.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008  |  IP: Logged | Report this post to a Moderator
METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628

Icon 1 posted      Profile for METALLlC BLUE     Send New Private Message       Edit/Delete Post   Reply With Quote 
I'm into my 7th year as of Feb 16 of 2009. I am still stuck, but it wasn't until 2005 that I got aggressive for awhile. I went on 4 weeks of Vancomycin and Oral Penicillin. Since then I have tried a lot of antibiotics. Bactrim helped, but I wasn't on it long enough, Levaquin I think helped, but I wasn't on it long enough.

Tetracycline was a big help, it kept me stable even though I remained sick.

I'm changing doctors soon. I've seen two so far, and one of them wasn't going to do much different from the first, so I stayed with the first. Now I'm going to see the best of the best in January, so we'll see what happens.

My treatment right now is pretty aggressive but I foresee it getting much stronger soon.

Oh, and I have gotten better, but define better? I'm 35-40% functional on most days, my best day was in 2005, where I reached about 55-60%. I'm better than I was, but I'm far from well.

--------------------
I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.

E-mail: [email protected]

Posts: 4157 | From Western Massachusetts | Registered: Dec 2004  |  IP: Logged | Report this post to a Moderator
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270

Icon 1 posted      Profile for sutherngrl     Send New Private Message       Edit/Delete Post   Reply With Quote 
Yes, I know ppl that were ill for 20 years, treated for several years and have been symptom free for over 5 years now.
Posts: 4035 | From Mississippi | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
DebAz
Unregistered


Icon 1 posted            Edit/Delete Post   Reply With Quote 
Hello I was treated for two straight years and herxed the whole time and took a break for a year and am back at it for a year agan now and no progress and I am very discouraged. I have a great doctor and he is just calling me a tough case. I have batled infections since I was a teen though and it piled up through the years and he feels it is very embedded.> No comfort to me.. Good Luck . I hope your one of the more lucky ones and a cornor is turned soon.
IP: Logged | Report this post to a Moderator
Annxyz
LymeNet Contributor
Member # 9097

Icon 1 posted      Profile for Annxyz     Send New Private Message       Edit/Delete Post   Reply With Quote 
I also have chronic lyme that went without diagnosis 10 years . I have been on ABX for 3 years with very little improvement , other than being free of pain . I still feel fluish and fatigued.

There are no LLMD 's here and I have no insurance , so I have mostly self treated . I am not convinced I would be better off with an LLMD . The few I know who have had one have not
been cured either and have less money to show for it .

My own observation and personal opinion: This is a hit or miss disease . There are NO east answers , and it seem s the people who get better are simply tenacious and try a multitude of options , including alternatives.
I am less convinced that drugs are much of an answer for most of us.

I am sick of ABX and fear becoming resistant to infectious agents . Personally , I plan to
give them up soon and try herbs and rife , or maybe Groovy 2's latest combo .

I am also considering cryptolepsis and long term artimesia annua for babs .

I have been impressed with Ernie and DBergy's
progress with rife , along with manyothers who
got a LOT better after relapsing over and over with drugs .

I wish the machines wee cheaper. It seems the Doug coil and the GB 4000 have more members here who post big progress from my searches of data base . You might search this for yourself .

I think we have to keep plugging at it til God opens a window to help us understand the nature of the beasts that afflict us . I see no way I will get much better on drugs alone .

Keep striving and please share any progress or thing that works for you . I take GREAT encouragement from the folks who share the things that help them improve, even if it is not a cure .

Others here have posted they are improving
with infrared light , like Bejoy and Sparkle .

Blessings to you , ann

--------------------
ANNXYZ

Posts: 744 | From Mineola | Registered: Apr 2006  |  IP: Logged | Report this post to a Moderator
glm1111
Frequent Contributor (5K+ posts)
Member # 16556

Icon 1 posted      Profile for glm1111     Send New Private Message       Edit/Delete Post   Reply With Quote 
Don't mean to sound like a broken record, but unless you start treating for parasites and worms it can be frustrating.


www.lymephotos.com This is what came pouring out of me and many others. Also check out Humaworm antiparasitic herbs or

Monastery Of Herbs 818 360-4871 Calif. Monastery only sells to professionals like your dr, but they are very powerful and are targeted specifically for lyme, bart, bab, rickettsia, parasites and many more.


This is a very lousy disease,

Hope this helps,

Gael

--------------------
PARASITES/WORMS ARE NOW
RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS*

Posts: 6418 | From philadelphia pa | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
seibertneurolyme
Frequent Contributor (5K+ posts)
Member # 6416

Icon 1 posted      Profile for seibertneurolyme     Send New Private Message       Edit/Delete Post   Reply With Quote 
Hubby has been ill and on disability for 7 1/2 years -- has treated off and on with breaks (mainly due to finances) for about 5 years since he was diagnosed.

It is hard to judge his progress -- he actually had a couple of halfway decent years in the middle when he treated for babesia. But since last summer when he started trying to treat for bart/BLO/mycoplasma he has had many major ups and downs.

In my opinion, there is much more known about the coinfections than was known 5 years ago when we started. I find this encouraging.

The other thing I find very encouraging is the new tests being developed. If one is treating with antibiotics then you need to know what pathogens you have in order for the treatment to be effective. Herbs offer a more broad spectrum approach, but are not always strong enough to do the job by themselves in my opinion. That is why I treat hubby with both.

I am excited about the new PCR tests from Fry and Clongen and the bloodslides available from both labs. Even more excited about the 16S DNA sequencing tests available from Clongen -- I think this has the potential to revolutionize treatment.

Other newer developments include treating for biofilms and incorporating viral treatments into the mix.

I think sometimes it is good to at least get a 2nd opinion from another LLMD because fresh eyes may see things from a different angle and focus on something that has been overlooked.

Hubby did well on Crytolepis the first 10 days he used it. His 2nd round only lasted 2 days before he ended up in the ER. This was last summer. I think this herb may possibly help with bart/BLO/mycoplasma as well as babs. I have hubby on this again now at only 3 droppers 2 times daily (normal dose is 5 droppers 3 times daily).

So, my answer to your question is that I am still confident that hubby can recover. Just wish I knew how much longer it was going to take.

This is not medical advice. Just my opinion based on hubby's experiences.

Bea Seibert

[ 30. November 2008, 10:46 PM: Message edited by: seibertneurolyme ]

Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004  |  IP: Logged | Report this post to a Moderator
Lymeblue
LymeNet Contributor
Member # 6897

Icon 1 posted      Profile for Lymeblue     Send New Private Message       Edit/Delete Post   Reply With Quote 
Metallic, I thought you were seeing already a very good LLMD? Why are you switching? I'm just curious. Thanks!
Posts: 983 | From The sky | Registered: Feb 2005  |  IP: Logged | Report this post to a Moderator
Katrina
LymeNet Contributor
Member # 15236

Icon 1 posted      Profile for Katrina     Send New Private Message       Edit/Delete Post   Reply With Quote 
I tell you this disease is so frustrating!
I have been sick for 4.5 years. When I was first diagnosed I was treated aggressively for lyme. Pic-line followed by orals for the next year. I never stopped treatment. That year I returned to work, excersized and felt 90% of normal.

Then I relapsed even on treatment! The symptoms seemed a bit different but the doctors kept on treating me the same. Just different Abx.

This spring I finally had it. Minimal if any improvement despite aggressive treatment nonstop!

I read the book about why lyme treatment fails and decided maybe I had babesia.

This May I started aggressive Babs Tx and have seen some improvement up to 50-60% functioning with a few bad days. It brought a smile to my face.

I stopped treatment one month ago and my symptoms returned. Dr. S. in Florida feels my treatment was not long enough. Only 60 days.
So once again I'm starting. This time even more aggressive. Feel discouraged!

Seems that you never quite know what symptom is what,or what you are treating. My main symptoms are shortness of breath, chest pressure, night sweats, tachycardia, and muscle pain, headaches (posterior neck), dizziness and fatigue!!

I'm hoping the babs treatment will work this time.

Also does anyone know how bad the treatment for bartonella is? I have never really treated that.

What seems to bring the most success in terms of that treatment?

Thanks for all the words of encouragement! It helps to know that people do get better.

In closing I will say that even though I am still quite sick. I have seen a very very slow improvement over time. With periods of feeling really bad of course. But I do track my symptoms daily and I would say that over the last year or two I seem to make some slow improvements and my quality of life seems slightly better.

I really have to look long and hard but that seems to be the over-all trend.

This just takes so so long. I guess its a marathon not a sprint!

Blessings to all!

Posts: 219 | From Michigan | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270

Icon 1 posted      Profile for sutherngrl     Send New Private Message       Edit/Delete Post   Reply With Quote 
Katrina, I think treating for Babesia is the key. I know for me, months of antibiotics did nothing, but as soon as I addresses Babesia I began to see much improvement.

Bart is a bacterial infection so it is cured with the antibiotics used to cure the Lyme. Babs is the only malarial type infection that is carried by the tick.

I think for many ppl the problem may be that they have not treated for Babesia or at least not treated for it properly.

I am sure you will get other opinions on this, but from what I have observed from ppl I personally know, and myself, this seems to be the case.

Posts: 4035 | From Mississippi | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
jenny76
LymeNet Contributor
Member # 18205

Icon 1 posted      Profile for jenny76     Send New Private Message       Edit/Delete Post   Reply With Quote 
Does Babesia always show up on a blood test or can it be based on certain symptoms? I am just curious as my LLMD says that he feels that I am negative for Babesia.

Thank you,
Jenny

--------------------
Never, Never, Never give up!

Posts: 395 | From Connecticut | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
jenny76
LymeNet Contributor
Member # 18205

Icon 1 posted      Profile for jenny76     Send New Private Message       Edit/Delete Post   Reply With Quote 
Does Babesia always show up on a blood test or can it be based on certain symptoms? I am just curious as my LLMD says that he feels that I probably don't have Babesia.

Thank you,
Jenny

--------------------
Never, Never, Never give up!

Posts: 395 | From Connecticut | Registered: Nov 2008  |  IP: Logged | Report this post to a Moderator
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270

Icon 1 posted      Profile for sutherngrl     Send New Private Message       Edit/Delete Post   Reply With Quote 
My LLMD did not test for it. He based it on clinical diagnosis as is done for LD. The test for all these vector borne illnesses are all inaccurate. I would have not thought I had it, but started to improve after 2 weeks on Malarone.

A friend of mine said same thing happened to her. She treated LD for years and kept relapsing. When her doc finally treated for Babesia, she got completely well, and has been well for 5 years now.

Posts: 4035 | From Mississippi | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
Lymetoo
Moderator
Member # 743

Icon 1 posted      Profile for Lymetoo     Send New Private Message       Edit/Delete Post   Reply With Quote 
Try going off now. Finish it off with several rounds of high dose flagyl and then stop.

Support with continuing Rife or something similar.

I treated for 4 yrs then got brave and stopped. That was 4 yrs ago.

PS... I had babs too. Finished it off with Zith and artemesinin.

--------------------
--Lymetutu--
Opinions, not medical advice!

Posts: 95252 | From Texas | Registered: Feb 2001  |  IP: Logged | Report this post to a Moderator
kam
Honored Contributor (10K+ posts)
Member # 3410

Icon 1 posted      Profile for kam     Send New Private Message       Edit/Delete Post   Reply With Quote 
I came down too sick to work or do household chores in Oct 2001.

Finally dx and started treatment in 2003.

2008 has seen the most improvement.

Been on abx for 5 years.

But, 2008 was the first time I was able to add xango, and supplements and the Cowden Protocol (6 months) due to donations.

My lyme doc and I are limited on what we can do for treatment due to lack of resources.

So, I think that is why it is taking me so long to regain my health.

Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002  |  IP: Logged | Report this post to a Moderator
GraceT
LymeNet Contributor
Member # 16558

Icon 1 posted      Profile for GraceT     Send New Private Message       Edit/Delete Post   Reply With Quote 
I don't know why I was not tested for Bart or Babs, but I do know that when I use our GB-4000 on setting 467 which includes Babs, I feel it.

I could not find a setting for Bartonella nor Mycoplasma General, so learned how to program them in (easy to do).

Rife Away. Grace

Posts: 212 | From Arizona | Registered: Jul 2008  |  IP: Logged | Report this post to a Moderator
Katrina
LymeNet Contributor
Member # 15236

Icon 1 posted      Profile for Katrina     Send New Private Message       Edit/Delete Post   Reply With Quote 
As far as testing for babs, I really think there are only a couple strains that you can test for.

According to Dr. S. there are several more strains that have been identified like MO-1 and there is currently no testing for that. He said that he feels this one is very common. So in general you cannot go by testing alone.

I guess you need to go by symptoms.

I think I'm going to finish the 4-5 months of treatment and then move on to something else.

I have a rife machine at home and have never used it maybe its time to get that out as well.
Dr. S. feels that in general it hasn't helped cure anyone. I know plently of people who feel otherwise.

Also, what is everyones opinion of bartonella. Is there much success with that treatment?
Does it really make a difference in the overall cure for people?

One last thing. Does anyone suffer from shortness of breath and chest pressure and a rapid heart rate. These symptoms are really terrible. Any suggestions for relief. I sure hope the medication helps soon. Its been 2 weeks since I have restarted Mepron.


Thanks for all the help!

Posts: 219 | From Michigan | Registered: Apr 2008  |  IP: Logged | Report this post to a Moderator
troutscout
Frequent Contributor (5K+ posts)
Member # 3121

Icon 1 posted      Profile for troutscout     Send New Private Message       Edit/Delete Post   Reply With Quote 
WHOA!!!!!!!!!!!!!!!!


I'm here and been infected since the age of 8....untreated until I was 39....and now at the age of 45 (almost 46) after over 6 years of treamtnet...I am MUCH better.

Get rid of my candida and I might be symptom free.


trout [Wink]

lots of sups.....lots of abx....lots of rife.....lots of prayer....lots of of...if you're negative....see ya, bye, bye

--------------------
Now is the time in your life to find the "tiger" within.
Let the claws be bared,
and Lyme BEWARE!!!
www.iowalymedisease.com
[/URL]  -

Posts: 5262 | From North East Iowa | Registered: Sep 2002  |  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.