Or does it just linger on for the rest of your life? I know there is treatment, but does it work well enough to get rid of most symptoms for a lot of people or does it just act like a band aid?
Posted by bcb1200 (Member # 25745) on :
Joel:
I had these exact same thoughts when I was first diagnosed on 5/3.
The answer is YES. Most do. I hear the statistic is >80%. But it takes time (and money.)
There are many people on lymenet who were in terrible, terrible shape who are now completely symptom free, normal, and off medication. Sixgoofykids, TF, and many many others.
Keep in mind that this site is really for "active sufferers." Once people get well, they move on and live their lives. I know as I have started to feel more normal in recent weeks and have spent less time on lymenet.
Read "Cure Unknown" by Pamela Weintraub. Good info here.
Now...technically there is no way we can know if all of the lyme & co's are dead. I have heard that once you are disseminated you will always have the bug. The key therefore is to get it to a point where your immune system keeps it at bay and you are "normal." Think Chicken Pox. If you've had it..you still have it, but your body is keeping it under wraps, although it can resuface later in life as shingles.
Still...others say you can completely kill it. Problem is there is no way to tell.
Some people say you need "maintenance antibiotics" for the rest of your life. I don't believe that. Many have gotten off drugs and are enjoying their life symptom free and normal. I have no problem taking supplements for the rest of my life...but don't want to be on anitbiotics any more than I have to.
So..chin up. I'm having a bad day myself. But I have to keep reminding myself that I'm feeling so much better now than I was 7 weeks ago before treatment...and night and day better than I was in March / April. I"m 90% most days...I'm getting "me" back. I am tough. I will win.
You will win too...education and proper treatment is the key.
Posted by Dania84 (Member # 26278) on :
Thank you BCB for such reassuring words! Thats a very good way of looking at it. Its nice to hear something positive for once!
Posted by thomasx (Member # 13431) on :
I was 100% bad days for about 2.5 years. Now, since beginning with a new LLMD in January, I'm actually having more good days than bad. What a journey. Patience is a necessity.
Posted by triathletelymie (Member # 26456) on :
Hang in there everyone! I know that some days it is REALLY hard (for me, right now, too!)...'seems like you can't go on...at least for me...but, I have hope that we ALL can get well!!!! Oh...how I long for those pre-lyme days!
Posted by TF (Member # 14183) on :
I'm cured. I had undiagnosed lyme, babesiosis, and bartonella for 10 years.
It has now been over 5 years since I completed my lyme treatment and I am still symptom-free, enjoying my life.
I don't take any meds for these diseases. I don't take any supplements for these diseases. I am totally normal.
I even had steroid shots in my spine (epidural injections) 3 1/2 years ago and still the lyme did not come back on me.
That's why I say I am cured.
I hang around here to point people to the good doctors so they don't have to treat this horrendous disease year after year after year.
Once I got to a good lyme doc, I was treated for 1 year and done. Wasted 2 years with lesser docs before him.
The doc is the key to getting rid of this disease.
ALL of my friends with lyme have gotten rid of it also. I send them to the 2 docs I know who follow the Burrascano lyme treatment protocol. That's how it's done in my opinion. Some of these people had lyme for 20 years, diagnosed as fibromyalgia. They are all well today.
Posted by steelbone (Member # 14014) on :
I did abx for a year and got worse.
Then went to germany and used the bionic 880 with silver fillings in my mouth and didnt get well
Came home from germany and went and saw Dr jernigan and he said to replace my silvers filling and have my 2 root canals pulled so i did.
Now i am using a auto rife machine and Colloidal silver and the protocol i am on is working
Playing golf 3-4 times a weeks. Havent been able to do that for 5 yrs
Posted by bcb1200 (Member # 25745) on :
Joel...TF really helped me in my "early" days (like a month ago) I asked her tons of questions.
As you can see, there are a lot of different ways to treat. Abx work for some..but not others. You don't know until you try.
Cheers
Posted by Bocalyme (Member # 26459) on :
TF -- could you pm the name of your doctor? I've had chronic lyme for 5 years and really want to get over it. My son just got diagnosed and I want him to get over this even sooner. Thanks! Bocalyme
Posted by Keebler (Member # 12673) on :
- Although there is no official "cure" many have seen good quality and long-standing remissions. Of course, their self-care habits need to be good life-long, and that's true for everyone.
If lyme flares again, prompt action usually takes care of things. -
Posted by sixgoofykids (Member # 11141) on :
I am better. I had lyme for over 35 years, got bitten again about 7 years ago and got substantially worse. I did two years of abx, then switched to Bionic 880 and got better.
I've been in remission since last August, so almost a year.
Posted by Joel (Member # 26462) on :
what is Bionic 880?
Posted by sixgoofykids (Member # 11141) on :
It's an infrared light. A doctor in Germany treats Lyme with it.
Posted by Andie333 (Member # 7370) on :
I had undiagnosed lyme for years until my symptoms were finally raging, and I got tested (very positive). At the point I started taking antibiotics, i could hardly walk. My thinking was compromised, I had periodic seizures, and I had two bouts of full-body paralysis. I never imagined I'd be able to get past this.
After three years of antibiotic treatment, I started working full time in a high-stress position with an international company. I'm still on antibiotics, but have finally started addressing some of my symptoms with diet (anti-yeast; gluten-free). I have some remaining symptoms, but they're minor compared to what they used to be. I also look forward to the day I'm symptom free.
Posted by BoxerMom (Member # 25251) on :
I went undiagnosed for 18 years. I've been on antibiotics for just over 2 years.
The first 18 months of treatment were he!!. I didn't think I'd ever be well.
Now, at 26 months, I feel I am 90% recovered and will be finished with treatment this year.
Please educate yourself and plan for the long haul. You can recover.
Posted by Joel (Member # 26462) on :
Well I'm sort of stuck since no doctor will actually treat me, and there seem to be no LLMD's in the Dallas area.
Posted by cactus (Member # 7347) on :
I'm better, too.
I had relapsing/remitting Lyme for 20+ years. Then, in 2000, just spiralled downhill.
I went from being extremely active to almost bedbound.
Got "diagnosed" with fibromyalgia, CFS, Lupus, Myofascial Pain Syndrome, and finally MS.
We were planning to sell our house and buy one without stairs because I had to be carried up and down.
In 2005, we found out it *could* be Lyme, found my LLMD and...
After a long, hard road... I'm better.
We didn't have to sell our house. I can run up and down the stairs.
If you can't find a doc in your area, there are other options - lots of people here have gotten well using them.
Posted by sickpuppy (Member # 23846) on :
Joel, many have to travel to get to an llmd.
Posted by Joel (Member # 26462) on :
I think I'll find out what antibiotics I need and just treat myself. I'm done using our terrible and corrupt medical system.
Posted by bcb1200 (Member # 25745) on :
I advise against this. Your chances of successfully treating this is much lower without a good LLMD.
Isn't it worth to get on a plane to get yourself well? If you watch Under our Skin you will see how the guy from CA flies to NY for treatment. Anything to get well.
Posted by Joel (Member # 26462) on :
I don't have the resources to travel for treatment like that. I really have no other choice but to treat myself at this point.
Posted by steelbone (Member # 14014) on :
Joel
If your interested in Ozone, Rife and a few other things there this dr in the dallas area
I dont know anything about him just stumbled upon his website one day
What is Ozone? Does it help with lyme?
Posted by blinkie (Member # 14470) on :
Joel, my LLMDs are in Northern Cali. They will consult by phone after an initial visit. They are more reasonably priced than some others and they are aggressive.
I've gone from 35% functioning to 90% (with a brief remission in there)in 2.5 years. I also expect to be well by the nend of the year or shortly after.
Posted by bcb1200 (Member # 25745) on :
I have heard lyme referred to as a "Rich Man's Disease" because it is costly to treat and the people who get the best treatment, generally, are the ones who can afford it.
It can be costly. The LLMD's don't take insurance. The drugs are sometimes pricey. And the supplements are even more pricey.
I'm not rich by any means. My family has had to scale way back on all financial fronts and dip into savings to pay for my treatment to date.
Ask yourself this question...if you don't get well, what will that cost?
Posted by Lymetoo (Member # 743) on :
Other then the occasionl migraine flare ups (usually after bad eating habits, stress, weather changes..all mixed into one), Im pretty much symptom free.
Im not on any abx, and I only take daily supplements (vitamins, magnesium-D-zinc, fish oil, CoQ10) for overall good health. I bike regularly, walk everyday, and have even been able to drink alcohol again. (A weeks ago, I actually got hammered..first time in over 3 years.).
So yes, you can get cured, if you get the right LLMD, follow the protocol, and be extremely patient. It may take years, but realize its a marathon, not a sprint to get healthy.
Perhaps one of the bigger things to help with the cure too is to realize that you cant sit and dwell on every single little twinge, ache, pain, oddity...and you cant live on the pc looking up answers to what your body is going through.
There will also come a time when you will have to get off the meds, wean yourself of anything that isnt natural, and just start living your life again.
You cant just live in a cocoon and think that you will be healthy overnight, or suddenly wake up cured. You have to exercise, eat right, get plenty of sleep, do hobbies, and take control of your life.
But it all starts with a positive frame of mind...!!
Posted by Joel (Member # 26462) on :
I pay $300 out of pocket for me and my wife to have medical insurance. In addition I have to pay a lot of out of pocket expenses, like $150 for the MRI I just got. I simply cannot afford to go to a doctor that doesn't accept my insurance since I pay so much already.
Also, my wife isn't exactly supportive of me spending so much money trying to find a cure for my ailments considering I've already racked up thousands of dollars in bills as it is. If I tell her that it's going to cost thousands more, I will likely be facing a divorce in the near future. All this for something I'm not even sure will help me anyways.
Not trying to be dramatic here, but I've given a lot of very rational thought to ending it all. I've even started drafting up my final letter to my friends and family. I'm not sure I can deal with the pain of this any longer, nor do I really feel up to going through a wild goose chase in finding treatment that has only ended up in medical bills and more stress.
I'm near the end of my rope here.
Posted by SForsgren (Member # 7686) on :
I think this depends a lot on how one defines "cure". If cure is lack of significant symptoms, yes. If cure is all Lyme microbes gone with no risk of relapse, I do not think this is very likely today.
Remember, people get chickenpox as a child and they recover and feel fine, but later that same virus can lead to shingles. Very similar.
Lifelong lifestyle changes, detox, good diet, etc. may be required on an ongoing basis for many.
People do get well. I am doing very well. I've been there writing goodbye letters, etc. years ago and today am doing very well. You can get there too.
Posted by t9im (Member # 25489) on :
HI Joel:
I've read many stories of people being cured BUT the underlying theme in all the success stories is being treated with a LLMD.
Once the disease is past the first few weeks without treatment the normal doc's are not much help.
Posted by Joel (Member # 26462) on :
That's a good point about chickenpox. I got shingles recently, meaning the chickenpox (herpes something or other) is not entirely out of my system. But what you are saying is that it is possible to kill most of the lyme to get rid of the symptoms... which is good. But it would be nice if I could even get to the point of being treated. I have no idea why I have medical insurance if I never get treated for what's wrong with me.
Posted by bcb1200 (Member # 25745) on :
quote:Originally posted by Joel:
Not trying to be dramatic here, but I've given a lot of very rational thought to ending it all. I've even started drafting up my final letter to my friends and family. I'm not sure I can deal with the pain of this any longer, nor do I really feel up to going through a wild goose chase in finding treatment that has only ended up in medical bills and more stress.
I'm near the end of my rope here.
Joel:
This is not a good solution. I think everyone at some point or another is at their wits end. At my low point in March / April I was convinced that I would be like this forever (I was worse then), I was going to lose my job, be disabled, and put my family into financial ruin. I'm 35, married with an amazing wife, a 2 year old daughter, and a 13 week old daughter. Yup...my wife gave birth in March when I was literally at my worst. I made it through the birth...barely.
In April, I had my first ever thoughts of "ending it" because I was scared, had anxiety, and in general felt like crap. I never planned anything, mind you...but I had breif thoughts about it. I wanted to make it look like an accident so my family could get the life insurance I have. That way the house and college could be paid for.
But then I decided to man up and fight this damned thing. It is scary. But you know what...I'm 7 weeks in and am better. Am I still scared? You bet. Today really isn't a good day and I start freaking out about yeast and C. Diff.
But I am making progress. I will win. I may cost money...but who cares. Isn't your health worth it? Before lyme I had a career (still do), but I was on a fast pace with an international company. The future was looking good. My family and I had a plan. Now there are just a bunch of ????? as it is all contingent upon me and my family being healthy. So..I'm going to win and get my life back...for me and my family.
And I'm sorry..if your wife wants to leave becuase of it, then say goodbye. You'd rather stay with her and live in pain / misery or kill yourself than risk a divorce or debt?
There is only 1 you. There are other women.
Not trying to be insensitive about your wife. I'm sure you love her. I love mine so much..and lyme is hard on her. She has been doing the workload of taking care of our infant daughter while I"m in recovery. I've started helping out more in recent weeks as I feel a bit better. But I think she gets tired of "all lyme, all the time" as it is always on my mind. This is natural.
Why not at least travel to an LLMD and get the test and see what it says. Or better yet, order a test kit from www.igenex.com (they are free) and convince a doctor to sign the order. You will need to get blood drawn locally and follow the shipping instructions. But they can give you the results. You'll have to front the cost of the test and get reimbursed by your insurance later.
At least get an answer before giving up.
Posted by triathletelymie (Member # 26456) on :
Well said, bcb, as always!
Hang in there, Joel! It's tough but it will get better and you can get well!!!
Posted by blinkie (Member # 14470) on :
Also, try to keep in mind, the effects of many of these diseases is a fluctuation in hormones which can cause depression.
Believe me when I say we have all felt like you feel now. But where do you think your kids would be without you there? You're thier Daddy and they love you no matter what.
Be strong. Fight. Don't ever give up. You will beat this.
Posted by triathletelymie (Member # 26456) on :
Well said, bcb, as always!
Hang in there, Joel! It's tough but it will get better and you can get well!!!
Posted by Lymetoo (Member # 743) on :
Please don't give up before you even get started. Take your time and take a deep breath. You can do this. You can get well.
Speaking from experience, it won't necessarily cost you a fortune. I promise.
Posted by GiGi (Member # 259) on :
I am totally well today and have been for a long time.
I stopped being depressed after I removed the toxic metals out of my mouth. That is now 12 years ago and while still having had to clear Lyme for a few years and all the co-infections, depression went with the amalgams and the root canals.
I have been well for many years and can hardly believe that I have ever been so sick - only you guys make me think of it.
My doctor uses everything that works, from abx to tapping acupuncture points to herbs, from radishes and Sauerkraut to homeopathics, to picking your favorite healing music, to encouraging an old lady to start using a computer and pushing her to do research for him. That taught me to turn the total attention away from myself and to start thinking of others. I have been posting here what I learned for many years.
"Fighting it and beating it" is not the best attitude. It creates the wrong energy. I knew that every day ahead was better than the one I left behind. Don't engrave the "I am so sick" into your DNA day in and day -- it is difficult to remove. It creates bad biochemistry. Find a different theme song - it works!
It worked for me.
Take care.
Posted by Joel (Member # 26462) on :
My doc gave me lyrica to help with the nerve pain and it's actually helped.
It might be totally psychological but I do seem to feel better for the first time in a long time. And I ordered some antibiotics online to treat myself, so hopefully that will help. If not, I'll keep on seeking to find answers.
Thanks everyone for your encouraging words. It means a lot.
Posted by jwick25 (Member # 15190) on :
Hi Joel,
So glad to see that you are feeling a bit better! Don't ever, ever give up.
I can remember the exact moment (where I was standing, what I was thinking, etc.) when I mentally gave up.
I thought, "If this is it...if this is how my life is going to be from here on out...what is the point?"
I was so sick, I couldn't get from the couch to the bathroom without my husband's help.
With proper treatment, you really can get better. Maybe not 100%, but worlds better.
It can be so tough and mentally draining to try to stay positive. I'm flaring right now and have days when I catch myself crying and being so negative.
When that happens, I remember that day when I was ready to throw in the towel. I remember that I had been so much sicker...and got into remission.
Hang in there, and try your best to stay positive and mentally strong. I know, easier said than done...lol!
I hope you get the proper treatment and continue to improve!
All the best!
Posted by SForsgren (Member # 7686) on :
Lyme disease is not a do-it-yourself disease. It requires a doctor that specializes in the condition in order to optimize the outcomes. A doc that RX Lyrica for Lyme disease would make me wonder if they were a Lyme doctor or just another doc treating symptoms - which likely won't lead to solutions.
I would highly suggest that you find someone in your area that has treated hundreds or thousands of people with Lyme.
Posted by Joel (Member # 26462) on :
He isn't a lyme doc, he's a neuro. But right now I will take anything that makes me feel better.
In the meantime, I ordered fish omoxicillin online, and I realized when I got it that's it just regular omoxicillin that was produced for human use and just put in a Fix Mox bottle (from researching the pill number on the outside). Ridiculous!
Anyways, I'm going to take it and see if it makes me feel better.
Posted by momofthree (Member # 19490) on :
Dr. B gave a speech in Green Bay last week. He said that the CD-57 test can be a screening test. It should be sent to LabCorp. If your CD-57 is over 120 relapse is NOT likely after treatment ends.
Posted by Joel (Member # 26462) on :
What is CD-57??
Posted by bcb1200 (Member # 25745) on :
It measures the level of "Natural Killer" cells in your blood stream. THe NK CD-57 test should be done by Labcorp.
Lyme targets the NK cells, part of your immune system, in your blood stream. The idea is you can measure the amount of NK cells to see / measure your lyme progress. This is similar to the way HIV attacks T cells in the blood and HIV patients monitor T cell levels.
Normal CD-57 values are >200. The worst (ie Chronic) lyme folks are <60. Generally if your CD-57>120 (and ideally above 200) then a relapse most likely will not happen because your body's immune system is strong enought to fight it.
Mine was 84 at the start of treatment. While not great, I'm above 60 and on my way!!
ps Some people don't put much stock in CD-57. I do. Dr. B feels that if you are still ill and have a high CD-57 you most likely have to treat co-infections as lyme is under control
Posted by JunkYardWily (Member # 24271) on :
its a killer tcell or immune response measurement of some sort.
>200 score means your in good shape. <60 means you need some work. i just had mine tested and it was 160. im sick all the time now and have seen little improvement after 10 months of treatment so im not too sure how usefull the test is.
JOEL-ive read your posts and have a few thoughts if you want...im 30 year old with neuro and sickness symptoms along with weakness that manifiest everyday. i dont think i will beat this diseasse. i do however 100% believe that one can beat it. i have a family friend who went from barely being able to walk to "better than before i got sick" after just one year of treatment. i also tend to think that this could be the result of your problems.
you can see a LLMD for <$1300 a year. that $100 a month. thats a cable bill. money is needed but you can give it a shot without spending 50k.
im sorry about your wife. im sure thats very had to deal with. if it makes you feel better, misery loves company, my parents dont believe im sick. they think im making it up and now have poisened the rest of my family against me. its hard to deal with. i hope to prove them wrong. i hope you give treatment a try and it is the answer to your problems.
good luck with whatever choices you make in your effor to be normal again.
Posted by JunkYardWily (Member # 24271) on :
IF the government did create this...isnt it possible it got out of control on them. i mean come on the government isnt exactly competent.
Posted by daisyrlb (Member # 15686) on :
Recently I relapsed and am now being treated for Lyme & Co for the THIRD time. The first two times I was treated with abx and was very sick most of the time. I began treatment in April following Dr. J's (KS) protocol and the difference between abx and his protocol is the difference between night and day! Most of the time I am doing very well.
I noticed today that Dr. J posted a new blog titled, "Can Lyme Disease Be Cured?" Very interesting and informative.
I do believe the government is ignoring this issue, but to say they created it? Ridiculous. The government can't even perform the most simple duties adequately, how could they be responsible for creating an disease like this and inject it into ticks everywhere? That's such an implausible idea it deserves no further discussion.
However, you are entitled to your own opinion of course.
Posted by linky123 (Member # 19974) on :
Hi Joel
Google Project Paperclip-Lyme Disease and read up on it. There's a lot of evidence to support the biological weapon theory.
Those that advise consulting an llmd are right. This illness is too complicated to beat on our own.
Best of luck in whatever you decide to do!
Posted by glm1111 (Member # 16556) on :
Joel, After 4 yrs of abx, I started treating myself because of lack of funds. I found the lymephotos site here on lymenet.
I started with antiparasitic herbs and then salt/c. Parasites and worms play a MAJOR role in Lyme disease. A lot of people end up treating themselves very successfully. Do a search on here for parasites and Lyme.
Hope this gives you some good insight. Please don't give up, you can get well,
Gael
Posted by Joel (Member # 26462) on :
Thanks glm111, I will look into that. As I said I'm not going to any more doctors, I can find out whatever kind of treatment I need and do it myself. If antibiotics don't work I will try something else.
Linky123 and onbam, there is also a lot of 'evidence' to support bigfoot, ufo's and that the moon landing was a hoax too. The fact is, this is a terrible disease. Regardless of how you think it was caused doesn't change the reality that we are sick. So you can either focus on the wild goose chase of conspiracy theories involving the government, which will end like every other conspiracy theory does... nowhere. OR, you can focus on beating the disease. I prefer to focus on the latter, but that's just me.
Posted by linky123 (Member # 19974) on :
I don't 'focus' on it, as you say, nor am I on a 'wild goose chase.'
The evidence is there if you take the time to look.
As I said before, good luck. Gael is right about the parasites. I and my family are in remission, and are now working with an md on detox.
The first thing he did was get rid of the parasites, using both homeopathics and pharmaceuticals.
They don't go quietly, but they do need to go if your immune system is to have a fighting chance against this disease.
Salt/C works for some. My kidneys just couldn't handle it.
Posted by Joel (Member # 26462) on :
Also, if Lyme was created by scientists during the 1950's, how do you discredit the fact that Lyme was identified as far back as the 1800's in America?
Posted by Joel (Member # 26462) on :
I understand, but what you're talking about involved a sophistication that simply does not exist, and certainly one that didn't exist on Plum Island during the 1950's. There's no question our government did experiments on chemical and biological warfare. But the fact that they could successfully take a strand of lyme and mutate it into something far more complex and deadly than it was and somehow transmit it back to ticks and other animals is far beyond the technology that we had in the 1950's. And even if they were able to do it and still have the cure but not release it sounds ridiculous. All the lyme conspiracy theorists I know say that big pharm is partly behind this... if they were don't you think they would be selling the cure at a premium? With the amount of people who have this, they could make billions overnight!! It's simply illogical to say there is a cure out there.
I take the stance that the simpler reason is the more logical reason. Lyme is very difficult to detect, and even harder to cure. Doctors are all about saving time and money. If they have to devote a lot of time to finding out what is causing someone's symptoms, they lose interest. This is simply one of those diseases that people have not yet drawn an interest to for a variety of reasons.
#1. It's not deadly. Breast cancer & heart disease are far more visible because people die. While some may eventually die from chronic lyme, it's not nearly at the rate of other diseases.
#2. It's difficult to detect. Diseases like MS which have similar symptoms can be detected simply from MRI results. Lyme should be diagnosed clinically, which doctors hate to do these days for reasons I've already stated. It takes time and doctors are like us, they want a quick fix. They also don't want to be mistaken for making the wrong diagnosis and get sued.
#3. Arrogance. The medical community has already made up their mind about lyme disease, they think it's not serious, and they don't want to be proven wrong. If they are proven wrong it will open up a whole can of worms... what if they are wrong about something else?
All of these reasons are far more logical than some government conspiracy theory about experimentation. Of course, I could be wrong.
Posted by JunkYardWily (Member # 24271) on :
please dont think that i believe the government created lyme but...i do know that there is much unknown about the disease and for anyone to say that it was or wasnt created by the government would be opinion. maybe the government intended on it becoming lethal and never "perfected it" to that point. i dont know i wouldnt rule out much.
please dont kill me for my point of view, i know it will anger a lot of people but im also not convinced its active in chronic people. i think there is a chance it does quick massive damage that takes the body a long period of time to get over, if it ever does, even though the infection is controlled early on in treatment. i dont think this is the case, just a chance this is the case. i know far less on the subject than others here though so dont ream me for this thought.
Posted by j_liz (Member # 20496) on :
Joel,
My LLMD starts treatment with a natural product called Prima Una de Gato (aka Cat's Claw) and has had success with it. For those who don't do well with it she moves onto abx.
I did well with it until I got a dozen bug bites and either got reinfected with Lyme or some other disease. Even with abx she has her patients continue with the PUdG.
She, also, has us taking supplements to support our bodies.
Thanks Liz, there are a lot of treatments I need to read up on... there seem to be a lot of lyme treatment options out there that work well for people and that's good. I just have to find what works for me.
JunkYardWily, no one is going to kill you for your point of view. I can't say it's wrong, I just don't know enough about this disease. I do, however, have my own OPINIONS about it. But I think we can all agree on one thing; this is a very serious disease that is difficult to treat. Each and every one of us that is unfortunate to have it know how bad it truly is. The other 'details' about how and if it was created, to me, are rather irrelavent.
Posted by linky123 (Member # 19974) on :
Yes, it's serious and we wish you the best in finding a tx you can afford and is also effective.
Lymenet has been an wonderful resource for me and my family. So much good info here.
We can agree to disagree as to where it came from, but still support each other through this awful illness.
Posted by yankees237 (Member # 25791) on :
Joel, watch this videa for some inspiration, it'll work trust me. Never give up...
Getting back to the topic; "Has anyone been completely cured of chronic lyme disease?" Here's an interesting article written by a LLND who's written a book titled, "Beating Lyme Disease".
He has an interesting perspective on this very question.
Gary
Posted by Consuelachacha (Member # 26538) on :
Hi Joel;
WOW, what a thread!!
So much I want to comment on, but I would have to scroll up a thousand times as my memory is 3 seconds long.
First, I am sorry you are even here because that means you have Lyme. Second, I'm glad you are here because since you do have Lyme, this is one of the greatest sites I have found.
I can SO relate to almost everything you said.
I too cannot afford an LLMD. I live in St. Louis and Lyme is UNHEARD of here. It just doesn't happen. Well here I am.
I have been sick for many, many, many years. I have been diagnosed with Lupus, Bi-Polar, PTSD (Post Traumatic Stress Disorder), Irritable Bowel Syndrome, Diverticulosis, Spastic Colon, Migraines....I could go on and on.
The beginning of May of this year I felt like my Lupus was coming out of remission. Extremely tired, knees began to ache, fluid was coming back on my right knee, etc. I called my Internal Medicine Dr., she said I needed to see a Rheumatologist (sp?). I did.
She ran pages and pages of virus tests, one of which was LYME. They called me the day after Memorial Day and wanted to see me right away. Told me my ANA came back negative (therefore, my Lupus was not out of remission), however, I am positive for Lyme.
I went in that afternoon. She put me on 4 weeks of Doxy. 100 mg 2x day. (Yesterday was my last dose)
Being OCD, I was on the internet every single day to learn everything I could about Lyme. I also found this site. (That was the best thing I found).
I also cannot afford treatment. I cannot afford these LLMD's. I think it is insane what they are charging people to get well, or try to get well from this horrible disease.
I am 1 year divorced, raising our 14 year old son by myself. My other 2 children are grown and one is in Wisconsin. My daughter is near me, at least not out of state and is of help to me when she can be.
I too have been suicidal. I'm tired, I'm discouraged, I feel I am not going to get well because I cannot afford to see the PROPER Dr.
The 4 weeks of Doxy was horrid. I became worse. They tell me that is because abx begins to kill the spirochetes and they release toxins into your body and you actually do get worse. I'm dizzy, losing my balance, angry or crying, stiff neck, headache.....
I have ANOTHER call into an Infectious Disease Dr. which you will, if you haven't already, read that ID's are NOT the answer to getting well from Lyme. Like you, I have to do what I can do right now to try to get better. That is all I have right now, so I'm taking it.
I cannot afford to get to Dr. C. If you haven't heard of him yet, he is one of the best LLMD's there are. HOWEVER, $75/15 min. phone call. I think someone said $490/first visit. Plus, I have to get there!!
I am on disability and only have Medicare for insurance, so that means $1,000's out of pocket.
After a $30,000 divorce. Looking at bankruptcy because my ex has blown my credit and filed bankruptcy himself. I'm...stuck.
I just wanted you to know, I know how you feel. Many, many people here know how you feel. Keep coming here for support. It has helped me a lot.
I have read about the government bioweapon stuff and I don't really care where the hell it came from, all I know is I have it from a supposed tick bite from who knows when and it is killing me.
Your question...can you be cured from Lyme? I don't know. I want to "feel" better. I was told by the Dr. that dx. me that once you have been dx. you will always be positive. Someone mentioned chicken pox. I guess that is a pretty good synopsis of Lyme.
Please don't give up. I want to also. I am 47 and have lived through hell since the age of 4. If I let this win, the fight I have fought has been for nothing.
Please feel free to send me a PM if you like. I really can so relate!
![[Smile]](smile.gif)
![[Wink]](wink.gif)
I asked her tons of questions.