phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Need your input as I don't see any improvement with treatment yet.. My LLMD told me there was no cure but treatable, hoping for a 40% improvement with me.
I will take the 40% but I have read so many of you have been cured or in remission.
What can I expect as I have probably had lyme for many years but been symptomatic for 13 yrs but the last three I seem to be going down hill. I wasn't dx with lyme until Oct. and saw the LLMD in Feb. I was told I had CFS/FM in the beginning.
I am on oral abx, supplements , herbs seems noting is working. I did have one good week in the beginning of treatment and it was wonderful but now sliding back to being in bed and in the house to much.
Tks. needed to vent.
Posts: 1058 | From VA | Registered: Oct 2010
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scorpiogirl
Frequent Contributor (1K+ posts)
Member # 31907
posted
I don't know if it is curable and I don't care. I like the way Dr. B put it at the conference. Right now our immune system is at 1 and our bacteria load is at 100. The goal through treatment is to flip it! Getting our immune up and bacteria load down and you will feel better. At that point it doesn't matter if you're completely cured or not your body will be able to function. Think of HIV patients they live w/ the viruses for the rest of their lives, but when manage properly (think Magic Johnson) they can live a full complete life.
It made me feel so much better seeing from that perspective than try to go for a cure. I just want to get to a point where my immune system is strong enough to function normally!! Hope that makes sense.
-------------------- Posts: 1391 | From Lyme Land | Registered: May 2011
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Jamers
Frequent Contributor (1K+ posts)
Member # 28016
posted
I totally agree with scorpiogirl. Keep the faith, people get their lives back everyday from this dis-ease!!
Your body just needs to be strong enough to keep it suppressed like it does with all the other viruses and bacteria inside.
-------------------- Diagnosed Pos. Lyme Nov. 17, 2010, Igx. Pos. Babesia Duncani March 2011, Igx. Clinical diagnosis for Bartonella Posts: 1127 | From North Carolina | Registered: Sep 2010
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posted
I am so much better than I was, I did not have one good day for my first seven months of treatment. Now my good days are out numbering my bad. It's worth it, stick with it. Diet, yoga and weight lifting, and detox, using binders (activated charcoal, apple pectin) were key for me. I have been in treatment for going on 11 months. I use abx, naturals, and supps.
Posts: 845 | From Northeast | Registered: May 2011
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Tks. Ok the key is to build your immune system but how when abx lowers it? My LLMD plan is to build the immune system, lower inflammation with supplements, herbs and a low dose of abx. Also diet..
Have nothing to lose will stick with it..I was so hoping in 6 months I would notice some improvement not sliding backwards.
posted
Phyl, Detoxing with binders cannot be overlooked, most of us I believe are in this boat because we don't detox well. When I added binders daily is when I really started to get better. Lyme is a neurotoxin illness. If you want to learn more about this, read Surviving Mold. I learned a lot about surviving Lyme from that book.
Posts: 845 | From Northeast | Registered: May 2011
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posted
Im in month 9 or 10 of treatment, i'm slowly seeing the light at the end of the tunnel, but I'm still not any better (physically) than when I started (even though I probably am much better!)
posted
Binders are things like activated charcoal, apple pectin, bentonite clay, and Chlorella. They bind to the toxins that are in your digestive tract. The toxins if not absorbed and moved out they just get recirculated. I do 10 apple pectin capsules a day when I'm not herxing, and 16 activated charcoal capsules a day when I am. I do these in two doses. You have to do them at least 2 hours away from abx because they will bind to them and move them out too.
Posts: 845 | From Northeast | Registered: May 2011
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
You strengthen your immune system while taking antibiotics by doing the Burrascano exercise program--1 hour of weight lifting every other day. Do a full body program. Read about it on pages 31 and following. Here is the beginning of the section:
"LYME DISEASE REHABILITATION
Despite antibiotic treatments, patients will NOT return to normal unless they exercise, so therefore an aggressive rehab program is absolutely necessary. It is a fact that a properly executed exercise program can actually go beyond the antibiotics in helping to clear the symptoms and to maintain a remission."
He then goes on to explain how this exercise benefits T cell function and helps to kill lyme bacteria.
My lyme doctor told me I would never get well unless I did this. I did it, and I totally recovered from lyme, babesiosis, and bartonella which I had undiagnosed for at least 10 years.
In April, it was 6 years since I completed my treatment and I am still symptom free.
This type of exercise definitely strengthens the immune system. I have seen it do this for me twice--once when I got rid of lyme, and once within the last year after using a steroid nasal spray (Nasonex). After using that spray for 3 months, I caught every illness that came around and was continually sick for 3 months.
I then went back to the full body 1 hour weight lifting program, and I have had perfect health ever since--5 months now.
So, I have proven to myself that what Burrascano says is a fact.
Every person with lyme needs to take the exercise requirement seriously. I truly believe it is a key to recovery, as does Burrascano and my lyme doctor and many other lyme doctors.
Posts: 9931 | From Maryland | Registered: Dec 2007
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posted
I am also well. I also strongly believe exercise is absolutely necessary and it needs to be some kind of strength training. I chose pilates, it's a moderate level strength training that works the full body.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
i am going with yes on this, although a lot of factors play into it and not "everyone" will be cured. i strongly believe some will be.
-------------------- 3 months Doxy 8 months of Tetra 7 months of Biaxin/Plaq. 4 months Doxy/Biaxin/Plaq. 5 months Biaxin/Plaq. Back on Doxy/Biax/Plaq On the road to recovery. Trying to make people Lyme Aware....... Posts: 289 | From R.I. | Registered: Jun 2009
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Thanks TF.. I need to get into PT..
Posts: 1058 | From VA | Registered: Oct 2010
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
I agree with what everyone has said and have only one thing to add. It is important to recognize all the co-infections because they need different abx/anti-malarials to treat.
I was much better, then much worse and I was so confused and dis-heartened by it. Each time this happened I discovered a new infection had taken over.
Now I am finally getting babesia under control and I feel nearly well. As expressed by others, "well" is when the immune system is capable of controlling the residual infections. I need to stay vigilant at all times. Diet is critical. I eat what is recommended for diabetes.
I expect I could have another "relapse" but I hope not. I will just fight my way through if it does happen.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
My daughter got better after tens years of being pretty darn ill.
She suffered from LD and erlichia.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
the most important thing is a good dr. who understands tbds but is willing to investigate other avenues, listens, and cares.
Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
When you say your dr is treating with low dose abx, I have to wonder if your dr is treating you adequately. I don't know all the ins and outs of your situation, so I don't know. But it takes as aggressive treatment as your body can handle. And as someone said above, treating all the co-infections.
And you can't just take one abx at a time and expect that to be sufficient. So make sure that you are seeing the best LLMD you can find, and that they are treating according to Burrascano's guidelines or similar.
And it takes time. Often with plenty of bumps in the road.
Posts: 3771 | From around | Registered: Mar 2008
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posted
I am in remission(hopefully permanently) from chronic Lyme. I am taking LDN and daily powdered multivitamin drink and that is IT. I eat a vegan diet and do ultra-marathons. I DO believe you can get better from this disease. For me, the change came when I STOPPED taking all the abx.
It isn't a quick fix, that's for sure. It is definitely a long road, but there is an end to it, I believe!
Posts: 206 | From In the shadow of a mountain | Registered: Feb 2011
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Have nothing to lose will stick with it..I was so hoping in 6 months I would notice some improvement not sliding backwards.
- not too many chronic patients feel "good" or even "better" in 6 months
keep going!!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Abx does lower your immunity as your immune system is basically in your GI tract.
I never felt good on any abx, even before lyme, so I am really not an abx person. I gave it to my daughter when she got acute lyme, I took it myself when I was first infected... But today, it wouldn't be my first choice.
Having loads of toxins in the body is not a good thing for the immune system. I agree on cleansing.
Have you heard the theory of the milieu causing disease, not the pathogen?
Many people around me get constantly bitten but never fall really sick.
I fell sick after my first bite, and so did my daughter. I do believe on the milieu theory today, that falling sick with lyme has to do with the milieu, what kind of milieu you had BEFORE you were bitten!
Correct the milieu (it this is possible) and a lot will be better. Cleansing is the starting point, in my opinion!
this is my personal opinion. I'm in full remission for more than 2 years now. But I just got bitten again now (2 bites). I hope they are not infected, but who knows?
Posts: 6199 | From Brussels | Registered: Oct 2007
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posted
I very much agree with you Brussels about abx and the immune system. I realize for some they swear by them to feel better.. But what about when their immune system is wrecked due to long term use! IMO.. Abx most likely are one of the causes of the body being unable to detox. Someone else can eat charcoal no thank you!!
Posts: 96 | From USA | Registered: Jun 2011
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posted
Raw vegan . Good for you! What is LDN?
Posts: 96 | From USA | Registered: Jun 2011
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
I was on abx for 18 months before I started to feel better. Don't give up too soon!
Posts: 1954 | From Illinois | Registered: Aug 2007
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