I have been treating for almost a year now, first with abx and then now naturally and I am worse still than I was before treatment.
Nothing seems to work and I wonder why.
I have had Lyme for 15 years
Is there really any hope or once it has taken you psychologically and cognitively and has taken your soul and personality away and you are out of it 24/7 is there really any hope of gaining life and normalcy back?
And how long does it take?
Posted by Maya12 (Member # 36392) on :
Basically it is taking soooo long to see any improvements, is this normal for it to take this long?
Posted by Dogsandcats (Member # 28544) on :
It is different for each person based on many things. It does get old, but try to find the things you can do.
I play games in the computer, it makes my brain move. Try to get outside for fresh air.
I have to push myself, but I am always glad I did.
Hugs
Posted by daynise (Member # 39609) on :
Hi Maya!
I was wondering how you were doing! What are you taking for neurotoxins and die-off symptoms?
Are you still treating parasites?
Let us know what you are doing presently and I bet a lot of people can make suggestions on ways to tweak your protocol or things to talk to your doctor about!
Posted by daphnesmom1 (Member # 39433) on :
Lots of peoople get better. I think it depends on how long you have actually been infected. In my case, probably alot longer than I initially thought was the case.
I understand how frustrating it is. Up and down.
Posted by Pony (Member # 32559) on :
It's never hopeless unless you give up
Keep on fighting, trying new things, searching for new perspectives.
Good luck!
Posted by Lymetoo (Member # 743) on :
Also depends upon WHO is treating you.
Posted by Maya12 (Member # 36392) on :
Well I have had this for 15 years and do have a good llnd, hey dahpbesmom how long have you had it?
And can it take over a year to see results?
I can't do abx right now , they are too much
I am not currently treating parasites but am going after te infections with uv blood ozone treatments, vit c ivs and many homeopathics and supplements
Posted by Tammy N. (Member # 26835) on :
With parasites being considered the Number 1 co-infection, I would strongly consider going after them in ernest (a long-term, dedicated effort). I'm 10 months into treatment and can't believe I'm still passing them. But, without a doubt, this treatment has done more for me than anything else I have done in the last 18-20 years. I wish someone early on had shared this info with me. I have no doubt my life would have been different.
I'm sorry you are not feeling well.
[ 04-01-2013, 09:24 AM: Message edited by: Tammy N. ]
Posted by glm1111 (Member # 16556) on :
Maya,
I wholeheartedly agree with Tammy. We both know from experience that was the infection keeping us both sick for yrs.
Treating parasites are first are KEY in eradicating other infections. the parasites, harbor and protect the co-infections. That is why Dr. K. treats all of his patients FIRST for parasites and SECOND for Lyme.
Gael
Posted by Maya12 (Member # 36392) on :
I really want to treat parasites and will be at some point in the future but we are trying to get the heavy metals and bugs down a bit do that when I treat for parasites I will have a slightly lighter load of body metals and will continue chelation while on parasite meds
Dis you treat for heavy metals Tammy?
Posted by tdtid (Member # 10276) on :
Yes, it DOES get better. It took me 5 1/2 years and 16 months of that was with IV. My LLMD is excellent, so I was blessed.
I had it in total remission until they found spots on my lungs and did a lung surgery to check for cancer. It turned out to be Histoplasmosis, but in the process, the stress of the surgery or else the Lung fungus knocked me out of remission.
BUT with that said, I'm just taking maintenance doses and no herxing or feeling badly. Life continues as it once was.
So yes, I know first hand that there is life after Lyme. Keep being persistent. It takes a long time for most of us, but it is so worth it in the end.
Posted by lyme in Putnam (Member # 11561) on :
Maya, i feel same as you mind and soul and had a day last week that I was me again. Its tough when it switches back. Im doing Byron Whites and ondamed. I feel the same but we have to keep going. I saw life last week, Im still under there and so are you. Its this crap that has gone on forever inside us. Keep going. I was so bad two days ago, its easy to lose faith when it goes on so long. We gotta keep going God knows our hearts, im counting on that till I get back.
Posted by CherylSue (Member # 13077) on :
Yeah, it does get better, but may take a few years. I saw 3 LLMD's before I found one that had the right protocol for ME.
There's so much they know than they did when I became so ill 13 years ago. I went almost 8 years before I was diagnosed.
Someday, you'll be able to put this behind you like a bad dream.
Posted by Maya12 (Member # 36392) on :
Thanks a lot for reminding me of this guys , I do really appreciate it and I am feeling a little bit better lately.
It is just nice to know that there is something worth fighting for
Posted by cozynana (Member # 34270) on :
Maya, I was probably infected when I was 17-18. I am now 55. I had issues for decades.
When I was 51 I crashed big time and knew I was going to die. I was finally diagnosed about 16 months ago.
I have had a botched colonoscopy, a full precancerous hysterectomy, three kidney stone surgeries, and a 1/2 of my thyroid and 3 or 4 parathyroids removed in the past four years.
I thought I was going to die. I was bed ridden and had no hope.
Today was Easter and I got up at 5 a.m., fixed a full bacon, eggs, and sweet bread breakfast,
fixed steaks and all the fixins for lunch, and sent my daughter and her family on the road a couple of hours ago.
Don't give up. Last year I could not have done this. Many times my daughter and my husband would have to fix the food, serve it, do the dishes and entertain who ever was at our house.
Do the due diligence and take the drugs and supplements, drink the water (and not much else), get on the Lyme diet and don't cheat.
Find out what else is wrong with you and keep searching until something helps. I would not be alive today if I had not had all the surgeries.
My last one was the hyperparathyroid and growth on 1/2 of my thyroid.
I think between the Lyme protocol and the last surgery we have finally figured out all that was wrong.
I tell people that Lyme is like a tornado and after the storm was gone it left a path of destruction I had to clean up in my body.
It was not a bit of fun and wondered if I was strong enough to persist, but here I am and glad I was determined not to let it get me down.
Hang in there. I would also add the herbs and herbal antibiotic, cryptolepis helped me the most in my journey.
There is a place for the regular drug antibiotics, but my body would not tolerate them.
I also am religious with my diet. It pays to be dedicated.
Take care and know it does get better.
Posted by VV (Member # 38828) on :
cozynana,
What did cryptolepis hit? How long were you on it? Herxing?
Posted by nefferdun (Member # 20157) on :
I have gotten better. I am in a tenuous remission which depends entirely on sticking to the low fat vegan(ish) diet. I can't imagine anyone having bacon and eggs for breakfast and steaks for lunch getting well. Diet was my awakening.
I treated ALL of the infections I knew I had - borellia, bartonella, babesia duncani, ehrlichia and protomyxzoa. It is possible I have more but I am feeling very close to well 99% of the time.
I do not believe it is possible to knock down a heavy infections with herbs. I tried massive amounts of herbs between ABX when I developed side effects and needed a break. I never got better on herbs. I could keep my ground for a few weeks but then I always went backwards.
Whenever I got sicker it was because a new infection was taking over that the drugs I had been using did not effect. I had to analyze the difference in symptoms and figure out what was dominate.
If your primary infection is borellia, you will have flares about every 28 days. Mine came like clock work with the full moon. I could almost howl on those night, it was so terrible. I treated with doxy and then ketek. Hopefully I got the ehrlichia at the same time.
Then when bartonella took over I have muscle twitching, pain in my shins, weird discoloration of my skin, swelling that did not leave an impression when pressed, insomnia, aching shins, a feeling of being completely detached from myself and others and irritation with outbursts of rage. Levequin hit it really hard but I couldn't tolerate Levequin. Bactrim DS took it out.
Next was babesia duncani. My symptoms began to be hot flashes, profound fatigue, air hunger, my inability to concentrate became worse, horrible cramping in my back and thighs, headaches, depression and sleeping all the time. I treated this with mepron and zithro - then malarone and coartem.
Protomyxzo is similar to babesia so it is easy to keep treating babesia, thinking the treatment is just not working. I was so depressed I thought I was going to literally die. The difference in symptoms was nasal congestion, dry cough, loss of voice, stabbing nerve pain, headaches and insomnia. I also had typical babesia symptoms like extreme fatigue, air hunger and aching body.When I tested positive for this, I began ivermectin. I was a new person in two months. I also began LDN and methy cycle mutations as well as the diet.
I treated each of these infections for about a year each. The protomxzoa is incurable so I will always be managing it.
Posted by tailfeathers (Member # 39328) on :
Maya, you've gotten some really good feedback. What I don't understand is (and I apologize if I'm coming across as rude), is that if you work full-time (you had mentioned that a while ago) how are you able to do that? Have you quit your work? That alone would give me the strength to continue on vs. being so isolated at home 24/7. Just wondering. Good luck to you.
Posted by Lymedin2010 (Member # 34322) on :
I see Lyme all around me and know so many people with it. From people who are in "remission" with very little treatment & continue to have odd symptoms come and go......for years.
Others have taken ABX for a few months & got well at one point, but symptoms returned. Another set continue to take ABX & go nowhere with it.
I know of a person who has Lyme and virtually little ABX (1 month dose the whole 10 years they had it) & another person who has so many ABX for a few months now. They both have good & bad days and symptoms that come and go.
There is another group of people who were bitten 15-20 years ago & got treatment. For the most part they appear to be the most stable. They may go around with 1 or 2 symptoms (tiredness or fibromyalgia or ear ringing), but that is it. They remain with those symptoms for the rest of their lives.
From what I can see from others, the older Lyme was easier to bring down, but the newer version of the Lyme soup is relentless.
Posted by VV (Member # 38828) on :
"From what I can see from others, the older Lyme was easier to bring down, but the newer version of the Lyme soup is relentless."
My mom had it in the early 90's. Doc said it was not a recent infection.
![[group hug]](graemlins/grouphug.gif)