posted
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
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
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
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
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.
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
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
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
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
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. That's so demoralizing.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
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.
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
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
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DebAz
Unregistered
posted
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.
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posted
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 .
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
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
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posted
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
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posted
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
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posted
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
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
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
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posted
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
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posted
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
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
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
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posted
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: 96222 | From Texas | Registered: Feb 2001
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
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
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posted
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
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troutscout
Frequent Contributor (5K+ posts)
Member # 3121
posted
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
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
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That's so demoralizing.
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