I could really use some positive info. We are really worried about our Angie, and really need to feel like there is hope. We see Dr D mid March. All the nautural supplements and drops she is on from the first LLMD doesn't seem to be helping. She seems to be deteriorating. This is so hard on her and my son.
Need some serious positive thoughts. I know God is good, and I place my trust in Him, but feeling so helpless.
Posted by Robin123 (Member # 9197) on :
Yes, all the time we see this at support groups, that people come, pretty sick in the beginning, and then with good treatment, generally done with a good LLMD, but not always, people's health turns around.
That is the trick, to find out what treatment she is going to respond to. Means knowing what you're dealing with, re TBIs and anything else she's dealing with.
Maybe you'll need a new doctor's input.
Treatment for Lyme lands in three areas - kill/deter the organisms, detox, and fortify the body. If there is any detox problems, you can test for that via the detoxigenomic liver blood test, also the 23andme genetic test for ability to methylate and clear toxins.
If you'd like to say more about her symptoms and things she's tried, perhaps people here would respond with suggestions.
Posted by tulips (Member # 44773) on :
I know of a couple of people on Lymenet who have been healed. Perhaps you could PM them. I'll PM their names to you.
Posted by Brussels (Member # 13480) on :
Sent you a PM
Posted by tdtid (Member # 10276) on :
Angiegigi, Sadly, I do remember being where you are discussing. You reach a point that you feel this is totally hopeless.
I'm writing to say that yes, there IS hope and I'm living proof.
Sadly, most of the people you are seeking that HAVE gotten better, have moved on from this board and are busy living their lives again.
I know when I was going through treatment, I LIVED on this board. Now that I am better, I only drop by every few months.
I went five years being misdiagnosed and getting sicker and sicker. To the point that it totally crippled me. I let them give me epidural steroid injections and that was all she wrote.
After seeing all the specialists that my PCP could refer me to and being told I had anything from Lupus, to M.S., to Fibromyalgia, to me being CRAZY....I started seeing an N.D. to see if I could get to the root.
He ran an Igenix test and when it came back positive, he sent me to a LLMD. Saw him for two years before that doctor felt it had gone too neuro and wanted me to see one of the more prominent LLMD's in our country.
So I traveled five hours each way (my husband drove since I was so messed up). For me, I went through 16 months of IV antibiotics but hard to say what drug actually had me turn the corner since I was in treatment for 5 1/2 long years.
But I was very neuro since I was having seizures, tremors, couldn't walk, mumbled my speech that they thought perhaps I had had a stroke....basically I was a total mess and in so much pain.
Had the anxiety and just about every symptom you can read about here. But aggressive treatment and all the herxing that went with it did work for me.
It was a LONG hard road, but now I can walk up stairs all by myself and live a perfectly normal life. I'm getting ready to take a cruise in a couple of days and continue doing the things I thought I would never be able to do again.
I was extremely involved in the lyme community and can also say that I am not alone and just one of the lucky ones. I mean I was lucky, but there are so many of us out there.
I stay in contact with so many of my lyme friends that have also gotten to see the light at the end of the tunnel.
My only real advice is that I kept treating, even when I felt it was hopeless and that the abx were just making me SICK. I went sugar and gluten free which helps keep the candida away. Still had to treat for that off and on, but you just have to keep pushing forward.
Sadly, as my LLMD would say, it was trying to find the right drug for the right bug. He was always changing my treatment every month or two and each step would get me closer, although sometimes you really start to wonder.
There IS life at the other side of the tunnel and it is a wonderful one.
I know this has to be so hard for the people seeing us go through this terrible illness.
Although natural supplements are good, some of us are more advanced in our lyme and co infections that we really do need to be more aggressive. Hopefully Dr. D will get Angie on a positive path.
Please continue to check in and let us know how it is going. Hugs to you!
Posted by foxy loxy (Member # 47053) on :
Thanks tdtid, for that story... I too am discouraged... in looking at your story, I wonder if I just don't need longer I.V. meds...as pretty much all my symptoms are in my head...
It is a discouraging thought tho because I have been on a year of I.V. rocephin and it just seemed to make me worse... although the longer I was on it I did seem to be making smaaaaaall gains..
UGGGGGH confusing illness!!!
Posted by droid1226 (Member # 34930) on :
It's hard to say. If you catch someone on a good day, they may say they are making huge progress. Even a good few months, they might post a success story. But this disease is a lifestyle. I personally haven't seen a lot of success stories in 4 yrs. Maybe it just seems that way because people get better, then don't talk about it.
Like Robin said, you can get better but everyone has a different key. I'm just trying to stack up little health tweaks that work & in the end, hopefully it will add up to big change.
Posted by tdtid (Member # 10276) on :
Foxy Loxy, Since I'm not a doctor, I sadly can't comment on your IV treatment.
For me, I started out with I.V. rocephin, but my doctor was changing what he put in the iv every month or two.
There were some meds he used that I was most definitely thinking were making me worse in stead of better.
At the point he felt he had beat it back enough with the IV, I had it in my head that when I was done with IV, I would be all better.
Sadly, that wasn't the case. I still did a few more years of oral, but then again, I had a case of Babesia with it that did not want to let up.
Droid226, I do recall good and bad days and even long periods of time that I thought I may be all better but then it would come back.
So I do understand how this can be a roller coaster.
But you really do reach a point that you REALLY know you have gotten over that bump. With that said, my doctor had me on herbals for quite some time to make sure it would stay at rest.
My doctor said that when you have neuro lyme, there is no "cure" at this time. BUT you can knock it in to long term remission and live a completely normal life.
Now that I've been off treatment for several years, I do feel comfortable that I have it totally under control, but I do know that I'm more aware of wanting to eat healthy and make good decisions regarding health.
I honestly remember being the one asking TONS of questions here and my brain fog was so horrid, I couldn't even understand what I was reading and would ask the question again.
I had tremors, seizures, it was a real nightmare that I honestly thought would kill me. That's sadly not even an exaggeration.
My heart breaks for all of you still dealing with this, but there is an end.
Try to find distractions in life. My problem was that I couldn't even watch tv due to sound sensitivies or light sensitives. Then it was not even comprehdning what was on.
I guess I talk about these various symptoms to state that I had a BAD BAD case and I DID get better. It wasn't just some tick bite that I treated for a week and saying I'm all better now.
I was bedridden, I went from wheel chair, to walker, to cane, to walking like nothing is wrong with me, nor would you know there ever was.
The only thing remaining that one would see is that I do have a scare on my upper chest where the port was put in.
But outside of that, I have no signs of ever being sick with lyme. BUT I was VERY sick for just over 10 years of my life.
I'm still in contact with several that USE to post here but as I said, once you get better, you don't tend to hang out here any more.
Keep fighting. It is SOOOO worth it, but it will NOT be easy.
Posted by TF (Member # 14183) on :
I was totally healed of lyme, babesiosis, and bartonella 10 years ago and I am still symptom-free, enjoying my life. I have the same life I had before lyme disease. I don't do anything to keep lyme away.
This is what I believe is the key to getting rid of lyme: The doctor! I can't emphasize that enough. The doc is the key.
I wasted 2 years taking antibiotics from 2 doctors who didn't know enough to cure me. Then, I switched to a doctor who followed the Burrascano protocol, and I was symptom-free in 8 months of his treatment.
I had had undiagnosed lyme disease for at least 10 years. Still, I got well.
I tell everyone to find a doctor who follows the Burrascano protocol. That protocol got rid of lyme for at least 5 of my friends. Burrascano was the lyme disease pioneer and the most successful lyme doctor on the planet before he retired.
Study it. Do everything he says to do. It is a 4-pronged protocol:
high-dose combinations of antibiotics diet supplements exercise (weightlifting for 1 continuous hour every other day.)
Here are some of the points in the Burrascano Guidelines:
You must attack both the regular and cyst (or other) form of lyme simultaneously--requires taking at least 2 different antibiotics at the same time to do so.
You must test the patient for all co-infections and other physical ailments (thyroid, etc.) and treat everything the person has.
You must treat all co-infections the patient has (including babesiosis, bartonella, ehrlichia, mycoplasma, etc.) or the patient will not get well.
You must use Igenex for most of these tests--they are a tick-borne disease speciality lab in Calif.
You must use very high doses of antibiotics to kill the diseases (batericidal doses).
You must give the patient supplements, probiotics, herbs such as artimesinin if babesiosis is suspected, and require adherence to rules such as low carb diet, no alcohol, no smoking, rest, and exercise as the patient is able to do it.
You must treat at least 2 months after all symptoms have disappeared (if sick at least 1 year).
These are just a few of the important points you will see in the guidelines. You want a doc who does EVERYTHING Burrascano says to do, if possible.
On Feb. 1, I sent you the name of a Burrascano-type doctor. You can get in quickly with this doctor. I hope you can find such a doctor.
Posted by tdtid (Member # 10276) on :
TF, Excellent advice. I know that without my LLMD that follows Burrascano protocol, I would have been no where.
But yes, getting our pre lyme life back IS possible with proper treatment. Thanks for chiming in too.
Posted by momindeep (Member # 7618) on :
My daughter is well after years of being very sick.
Posted by Lymetoo (Member # 743) on :
I contracted Lyme as a child and was not treated until I was nearly 50 yrs old. I was treated for Lyme and babesia for 4 yrs. I've been well for the past 12 years.
I do have problems with food intolerances and MCS now, but at least the Lyme is not an issue for me.
Posted by sixgoofykids (Member # 11141) on :
I'm better. I had it for 30+ years and was very sick. Now I don't have to think about Lyme anymore.
I do have MTHFR so treat that and I'm histamine intolerant, so have to watch that, but nothing that makes me feel sick or has anything to do with Lyme. More likely that they set the stage for me to get so sick with Lyme.
Posted by sutherngrl (Member # 16270) on :
I was extremely ill with Lyme Disease. Treated 4 and 1/2 years, and was so much better. I got my life back......able to live a normal life.
I have never felt as good as I did pre-Lyme; but I think any long term chronic illness takes a huge toll on your body. And some of us have lasting effects.
That being said, antibiotic treatment saved my life. Without it, I don't think I would be here today. I'm so glad I had a LLMD that knew how to treat me in a way that my body could handle.
Even when things seem overwhelming and you can't see a light at the end of the tunnel; never give up. You will eventually make a turn for the better. I treated for 3 years before I saw the first signs of getting better. It's different for everybody, so don't ever give up.
Posted by Keebler (Member # 12673) on :
- It certainly takes a very comprehensive approach. An overview:
Read it and take heart.
Posted by Brussels (Member # 13480) on :
Daughter and myself: totally lyme free for almost 7 years!
comprehensive approach.
Killing only is a tiny part of the problem. 80% of the treatment of lyme for us did not involve killing pathogens.
Detox made a whole difference.
Posted by LaniMo (Member # 37384) on :
Reading all of these testaments is encouraging -- thank you!
Do others find that you vacillate between wanting to try EVERYTHING (IV abx, IVIG, mHBOT, etc.) and wanting to discontinue all antibiotics?
What would happen if I were to taper off my antibiotic regimen?
Most days, I think they are making me feel worse, not better ...
Posted by mlg (Member # 35383) on :
I'm about 85% better for the last 1.5 years. The best things that helped treating babesia like organism. Zithro+Mepron rotate Artemisinin and crypto. Also rotate anti-parasitics Dr. C or Dr. K style. Also did infrared sauna, pulsed electromagnetic field treatment, probiotics, juiced, colonics, etc.
Posted by droid1226 (Member # 34930) on :
LaniMo, I didn't start improvement until a car accident where my PICC got ripped out. I stopped antibiotics that day, it's been over 2 yrs. Otherwise I'd be on them today because I thought they were my lifeline. They were actually keeping me sick. I think they did their job.
I kept thinking about Burrascano saying to treat for months after all symptoms have resolved but I think I hit a plateau that was as good as it was going to get. So you may be right.
Posted by ejan (Member # 47352) on :
droid1226, Did you do anything else after the Abx?
Posted by TickTock4422 (Member # 12553) on :
I have had Lyme disease for the past 26 years and been on antibiotics for almost 9 years. Now, at this time, I've begun to freak out worrying about damage to my liver or kidneys from the long-term treatment. I am also plain tired that there doesn't seem to have an end to my treatment anytime soon. I believe I am in the 10% of the Lyme population with Late stage Lyme and possibly I will not respond to treatment whatsoever.
I look at my MULTIPLE pills with disgust now and gag on them when I used to swallow a handful no problem. Anyone out there been treating as long as me and still requiring rigorous antibiotics and Babesia treatment? How long is TOO LONG? 9 years is such a long time to me? Anyone know if longer treatment of any sufferers happens and is this a normal occupancy for some cases?
I have responded to treatment in that I am 75% better than first diagnosed but have been plateaued last 2 years with muscularskelatal pain, cognitive deficits, blurred vision, neuropathy, etc.
Any help would be appreciated.
Thanks,
Ticktock
Posted by TickTock4422 (Member # 12553) on :
I have had Lyme disease for the past 26 years and been on antibiotics for almost 9 years. Now, at this time, I've begun to freak out worrying about damage to my liver or kidneys from the long-term treatment. I am also plain tired that there doesn't seem to have an end to my treatment anytime soon. I believe I am in the 10% of the Lyme population with Late stage Lyme and possibly I will not respond to treatment whatsoever.
I look at my MULTIPLE pills with disgust now and gag on them when I used to swallow a handful no problem. Anyone out there been treating as long as me and still requiring rigorous antibiotics and Babesia treatment? How long is TOO LONG? 9 years is such a long time to me? Anyone know if longer treatment of any sufferers happens and is this a normal occupancy for some cases?
I have responded to treatment in that I am 75% better than first diagnosed but have been plateaued last 2 years with muscularskelatal pain, cognitive deficits, blurred vision, neuropathy, etc.
Any help would be appreciated.
Thanks,
Ticktock
Posted by hopingandpraying (Member # 9256) on :
Here is a link from Lymenet titled "Progress and Success Stories" for encouragement:
There's a lot of info there regarding 'cycle therapy'. Since you are stuck, it may be something to consider. In the last post I added a link to Dr Burrascano's presentation. It's incredibly informative.
Wishing you the best,
Notti
Posted by LisaK (Member # 41384) on :
I AM!!!! me me me!!!
I did my own thing becasue I ran out of money and no good drs for lyme near me- so I went alternative and I am , in 2 years or so, 75-80% better than I was.
I was almost dead. I am better in so many ways, it excites me to type this !!!!
if you care to see what I have done you can search my name on here and see my posts..... or PM me
I am still searching for 99.999999% better , so it is always a work in progress- at least for me.
rigth now I am working on my heavy metal issues as well as vitamin deficiency. they play a KEY roll in healing after lyme.
God bless toyou and yours!
Posted by TickTock4422 (Member # 12553) on :
I've been on some kind of Babesia treatment 3 different times. I presently take Mepron / Clindamycin/Artemisinine. This last relapse, I haven't been able to discontinue the protocol as yet. Still having SOB, air hunger, some night sweats.
The only thing I suggested to my LLDD was to change meds due to a poss. resistance to the present Babesia meds, but he did not think it was necessary.
I take several supplements, but have never tried various suggested herbal treatments combined with my antibiotics, or other modalities such as Rife machine etc. I have read much about these, but having the mindset of a Nurse, I am a believer in the theory that antibiotics kill the bacterial organisms, so this treatment is the path I have chosen for myself. I have nothing against herbs; I believe in their effects, but I don't choose them for my treatment alone or combined with antbiotics. That's just even more pills I have to take. I will scream if I have to take 1 more pill!!
I tried B12 injection for over a year, but it never made a difference. I have never tested for heavy metals, although I believe in the theory of metal toxicity and chelation treatment.
I am sure I would benefit from testing but my LLDD has never addressed them with me. I just never questioned because I don't want any further medications in my life or other treatment, as I am at my wits end. I want to STOP all treatment. I know if I did and would have to restart, I would lose precious ground. I would have to restart at a low dose and work up to the high dose I am at now; taking many months.
I'm just tired after 9 years of treatment. I'm "DISGUSTED." That's the word...yet I'm worried that I'm not getting better.
Posted by Karensky (Member # 21350) on :
you can get better ! Key is to first find a good LLMD , and get tested . If warranted , then kill the bulk of the bugs with ABX . I agree with bettyg that imbalances in the body most likely make a person prone to lyme in the first place so then these imbalances need to be addressed ... hormones , vitamin & mineral deficiencies , heavy metals , candida . I went 3 months , no sugar , gluten , red meat , nightshade family veges , fermented food products & that really helped though it was hard in the beginning to cut so many things out @ once . Good probiotics ... I recommend live foods such as sauerkraut & kimchee etc . It is such an individual journey but getting the body & immune system functioning as well as is possible does help turn things around for the better . It is so hard in the beginning , so scary , so many questions but with a good LLMD & patience & perseverance you & your daughter will get through the worst & see improvement . Hang in there !
Posted by Phoiph (Member # 41238) on :
I am 100% well, med-free, after 8 years of neurological Lyme-hell.
Antibiotic protocols (including Burrascano's) made me much worse, and I became homebound in a very severe state, mentally and physically, for 5 years. I never thought I could recover.
My return to health due to consistent, long-term mild hyperbaric (w/home chamber), gut/nerve healing diet, and graded movement/exercise.
Have hope...healing is possible...
Posted by KH111 (Member # 25829) on :
My husband and I got Lyme and Babesia in 2002, and were immediately treated. We did not get better because we were not being treated for babesia. Until I pressured our then LLMD nurse to test for babesia and start treating it did we get better for good. So you need to make sure you are tested for co-infections. Treat lyme first then the co-infections. Our son by shear coincidence was bit by at tick 10 years later while traveling in Norway of all places. Because I went through all of this before I got him into see Dr. H, with help of a person on this board (thank you!!), and got him treatment. He had both lyme and bartonella. Most people have more than just lyme and you need to check and treat for everything. Its a lot of drugs and probiotics, lots but you just have to do it and keep it up. We did exercise, we did cardio because that is what we have always done. We are all fine now, knock on wood, and do not do anything special except take a pharmaceutical grade multivit, Dr. H recommended.
Read as much as you can on this board. Do searches for what people did who are better. We all pulsed tindimax and I do think that is key.
Good luck, you will get better!!
Posted by TNT (Member # 42349) on :
quote:Originally posted by sutherngrl: I treated for 3 years before I saw the first signs of getting better. It's different for everybody, so don't ever give up.
sutherngrl....what changed at that point in your treatment? Did you switch meds, docs, go after a different co-infection.... what? Do you have an idea what caused that turning point?
Posted by AngieGigi (Member # 47429) on :
I appreciate all of the support and suggestions. My Angie, got very sick on the antibiotics,
I am not sure what the first one was, the second was bioxin?
Dr. D stopped them both because she had severe vomiting and itching burning skin. He will start another one next week, but wanted her to get stronger first.
She is now taking over 100 pills a day and it takes all her energy.
Sometimes I wonder if she should just stop it all for a while and see what happens. So sad for her.
Posted by NYLymie (Member # 43330) on :
I consider myself a success story. While still living with Lyme and adjusting my life at times, I was most likely infected in 1980, went to 25 doctors YES, 25. All Dept heads in NY Mass and NJ - most wanted to prescribe anti depressants. I then found a LLMD through this site, and worked together with Dr. Using Burrascano Guide. I wanted an aggressive abx treatment and stayed on it for about 2 yrs. IV for four months, follow up when needed with Zithromax, Doxy... I stayed really well(considering) for about 10 years! Recently, I still feel better than before but needed a tune up trying a new abx.Also did a strong cleanse 3 times in 15 years V beneficial! Wishing you well!
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