posted
I've realized that this site really offers little help, just confusion. There are about 50 different opinions (both from doctors and patients alike) for every question that comes through, and every symptom under the sun could evidently be Lyme Disease. You come here to look for "answers" or information, and you end up being more confused than you were before, with TOO MUCH information. I know that most people have valuable advice, etc., but this is ridiculous. It also depends on what day, or time of day you post a question what kind of response you're gonna get. I just want to know - is there anybody else who got sucked into this forum only to become more confused about what steps they should take?
Posts: 23 | From wyoming | Registered: May 2006
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posted
I think that anytime you can educate yourself about this disease you need to decide what information that you gain is the best for you. Yes, there is a LOT on information, but that is the beauty of the site. Where else can you go to find as much info in one place? I think that once you start reading every post as the "Gospel" on lyme you are the one at fault and not the site. Also, How many people come back day after day? If the site was bad, Wouldn't they all go elsewhere?
Posts: 25 | From Lancaster PA | Registered: Aug 2006
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posted
unfortunately treatment for lyme as well as alot of other illnesses is very personalized, so the reason you get different responses is because the same things don't work for each person.
Its really annoying but alot of it is trial and error.
There are a huge amount of lyme symptoms since it attacks the CNS, so really it can affect any part of your body and health. This is why so many people rely on supplements just as much as ABX if not more to help them heal and get back on the road to health.
How long have you had lyme? What are your symptoms? I'd be glad to make suggestions and tell you what I'm doing (I'll PM you since it will be lengthy) but I'd want to know these two things first.
Posts: 594 | From NJ/NY | Registered: Jun 2006
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Aniek
Frequent Contributor (1K+ posts)
Member # 5374
posted
This site is not meant to provide easy answers. That just isn't possible with Lyme disease. It's a place to have conversations about Lyme.
It is also not meant to provide medical advice. Most people aren't doctors. Nobody knows your completely medical history or has done an evaluation of your condition.
It is also a public site. Since anybody can post, you get a variety of experiences and opinions. Some may be more helpful than others. You need to make that decision. It's part of a public board.
I find a great place to start is with the newbie links. They provide wonderful information on a number of the issues. Then you have to decide the direction you want to take and what issues you want to further research.
We all wish this disease was clearer and easier to understand. But it isn't.
-------------------- "When there is pain, there are no words." - Toni Morrison Posts: 4711 | From Washington, DC | Registered: Mar 2004
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Andie333
Frequent Contributor (1K+ posts)
Member # 7370
posted
Pat,
This site was initially invaluable to me as an information source. I'd been seeing one specialist after another for 9 years, only to be continuously misdiagnosed and mis-tested and mis-treated.
Here, I was able to start learning about these complex tick-borne diseases and the potential difficulty getting them diagnosed and treated.
Granted, it did seem like a lot of information, and I was too mentally-impaired by my illness to take it all in. So I went slowly, trying to focus on the things that were at hand at the time for me: what should I ask my LLMD? Has anyone else been paralyzed? Is ceftin a good antibiotic?
I skimmed through complicated medical posts (just didn't have the head for them at first); I had no interest in some of the off-topic political politics that were on the board then.
I desparately wanted to get well but tried not to let that desparation lure me into treatment options that didn't make sense to me.
There's a double truth we live with in this Lymey world, I've found: first, if we want good treatment, we have to become our own best advocates; that takes knowledge. Second, whatever differences we may have on this board, most of our lives are currently being shaped by a nasty, potentially life-crippling disease.
I've taken the board slowly, and I feel it's been invaluable. I'll be forever grateful to the people hwo, in my early days especially, took the time to help me sort out fact from sheer panic and who helped me realize I wasn't alone.
Andie
Posts: 2549 | From never never land | Registered: May 2005
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posted
Hi Pat, Yes...I cried for the first few months with this disease. I think the confusion we feel is because the diseases from ticks are beyond comprehensible.
I have a degree in chemistry and years dealing with medical education...I am dumbfounded daily about all the protocols to treat lyme and TBI's.
The docs are as confused as we are. We come to lymenet to share our experiences. I have read literaly hundreds of stories since my lyme journey began in Jan 06. All are different.
I have printed out treatment protocols of people with similar symptoms to mine who recovered...all are different.
This illness is currently the wild west of the medical profession, like the early days of AIDS.
I am convinced if we are to find some measure of healing it must begin with an open mind and heart towards each other and all the unsorted evidence on TBD's.
Lymenet is only one resouce, it is not an answer. When I get overwhelmed on lymenet, I take a break for awhile, live my life and read the mountains of articles I gather from all differnet sources. I listen to my gut.
We are raised to put our trust in the medical profession--maybe true for many diseses. Not true for TBD's.
Funny how every single case on west nile in CT right now is on all the news stations (there have been four). Never see any for lyme.
I think we go through stages of grief described my Kubler-Ross on death...Denial, Anger, Bargaining, Depression, Acceptance.
After 8 months, I sit wobbling on the fence between depression and acceptance.
It is what it is. Not a solvable problem but one that can be managed. To even have a chance, it requires us to be our best selves--smart- when we are dumb and confused, strong- when we are weak and in pain, resourceful-when we are poor and lacking the bare necessities.
Our honest confrontation of this devastating illness is a humbling and defining moment in our lives when we must stop everything we are doing because it no longer works and try things that might.
Then we must share what we know so far...this is where lymenet fits in. Connecting us.
Whether you come back here or not, stay strong and never give up.
Blessings, Kim
-------------------- We are spiritual beings on a human journey...
posted
I think the replies above are an example of the best lymenet has to offer. Taking my hat off to those who replied to this post.
Posts: 8430 | From Not available | Registered: Oct 2000
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It may seen very disheartening when you get so much dumbed on you an so many different points of veiw. What most forget is that Lyme affects everyone differently with only a few common denominators.
You have to decipher what works best for you. I assure you that most of the folks here are well intended and only want to help. Some want to sell a product and others still are just as confused...
Take it with a grain of salt and know that we are all in this boat together. If someone seems to be over board, they probably need more help than you do..
Blessings,
Julia
-------------------- Please consult your LLMD before making any changes to your treatment regimen. Posts: 641 | From NJ, USA | Registered: Oct 2001
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posted
I certainly don't use this forum for medical advice, any time a question is asked I see too many answers that are all over the board and all conflict with each other.
I come to lymenet to share experiences, offer support and comfort.
I guess it's more of a virtual support group.
Besides, misery loves company...and we all know we have plenty of the former.
Posts: 41 | From Somerset County, New Jersey | Registered: Aug 2006
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I hear your frustration and confusion, but if lyme was easy we would all be saying "I had lyme."
Just take a deep breath.
If it wasn't for this board, and had I listened to some of the docs that thought I was hysterical or faking it, I might be in a really ugly place right now.
Not that life is a picnic, but at least I have a place to go were people are compassionate, and understanding and get lyme.
This is the place I chose to be because I have found some really good info here. There are courageous people here that are willing to try anything to get better, and share it with you. Some things work for me, and some don't but I appreciate everyones input.
Hang in there. Nothing about this disease is easy. Just when I think I understand it, or can cope with the strange symptoms it changes.
Lyme the gift that keeps giving.
God Bless
Posts: 175 | From Pa | Registered: Aug 2006
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
I am in total agreement with Lou. I also take my hat off to the above poster's, Specially Human's post. Quite simpily said and very true.
-------------------- 5dana8 Posts: 4432 | From some where over the rainbow | Registered: Sep 2005
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AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
Hi Pat!
I'm sorry that you are suffering from information overload.
I don't believe it will get better if you continue to try to take information to a non-LLMD, even if they are receptive to trying.
I like my PCP and I've tried to do this. The more I've learned here, the more I realize how difficult that is to do.
The LLMDs people here speak of have been researching, studying and treating these diseases specifically for many years.
Most of the people here who offer advice and opinions have learned from their experience with LLMDs along with having done much of their own research.
They offer opinions based on their own experiences and everyone's is different. There are many common denominators, but no one thing seems to work for everyone. There are many different sets of co-infections and many may still be unknown, as testing is so unreliable.
Until great strides are made in the area of testing for Lyme & co-infections it will be impossible to sort this all out, other than by trial and error (and sometimes success!) Unfortunately, what works for one will not always work for another.
I finally posted in "seeking a doctor" to find an LLMD at a manageable distance for me. It has been the best thing I could have done for myself. I feel much less anxious now because I researched all the referrals I got and have faith in my LLMDs knowledge and dedication.
I would suggest that you post in "seeking a doctor" for LLMD referral near your City & State, gather your test results and make a list of your symptoms (you can use the checklist from Dr.B's guidelines or on Betty's newbie links post)and make an appt. to see a good LLMD.
I'm not sure how to read Igenex (I looked at a previous post) but I think it looks like you have some borderline results. Some have found that a 4? (or 6? unsure) month course of Doxy and Proteolytic Enzymes (like Wobenzym-N from health food store) followed by 2 wks off before Igenex may help to convert borderline results.
A good LLMD can tell by your symptoms which tests should be done, as co-infections (like Babesia) can affect your Lyme testing as well.
I gave up in 2004 before I knew about this site and before my recent tick bites. I knew there was something really wrong with me, but I let a PCP duck and "one of the top ID specialists in the country" convince me I was just a stressed- out, hypochondriacial, new mother who couldn't cope and needed more sleep, allergy medication, anti-depressants and psychotherapy.
The ID tested for everything (or so I thought) and found nothing. He then looked at my long, long list of past and present symptoms and deemed me a hypochondriac. (I know this now.)
I had cried for days. He had been my last hope for ever feeling better. Then I went back about daily struggle to cope with life, now really wondering what was wrong with my head. I thought I must really be insane.
I eventually lost more and more of my ability to think properly and my memory got worse and worse. I tried to go back to work. How scary to find out that I couldn't MAKE my brain work, no matter how I tried.
After my recent tick bites I found out I had past Babesiosis. The ID (iot ) never tested me for tick-borne diseases.
I learned never to trust so-called "Infectious Disease Specialists" from this web-site. I also learned that you will have a long, hard road full of trial and error and emotional torment unless you go to a doctor who really has a clue. I also learned that these are few and far between.
This is some of the most valuable information I have gotten in my life.
My advise to you is to:
NEVER GIVE UP!!
Get an LLMD appt., even if you just go to find out what's wrong.
Post for info (just take what you want or need and don't stress over the rest. Just take whatever pertains to your specific situation. Also try to phrase your questions as specifically as possible. (People here REALLY want to help you and they will bombard you with every possible bit of information in trying to do so. (I personally think this is great.))
Come back here for laughs with the silliness when you need it.
Don't get discouraged
Get well!!!!!
You can feel free to pm me (the little envelope icon with people by the top of my post)if I can help you at all. I'm sure others won't mind a pm either, if you find someone you can relate to.
I'm sorry if I babble like an idiot but I haven't gotten fixed yet. I've only just begun.
I wish you well and I hope you find the strength to perservere(sp). (Sorry, my brain's spell-check just gave out.)
God Bless. Ali
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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robi
Frequent Contributor (1K+ posts)
Member # 5547
posted
Yes, this is all very confusing. As you read you will find what calls to you. No one does everything!
Those who I have seen get better do most of the following: ABX to start, herbs,fish or flax oil, supplements,detox, clean, healthy diet. Organic if you can and no sugar, flour, rice or other carb foods. Stick with meat veggies and spices, stay away from processed packaged foods. Basically do everything to support your body's own defenses. That is what ultimately wll heal you.
Search out and collaborate with competent professioals rec. by other lymneters in your area. Stay hopeful ..........
Hope I did not add to the confusion, robi
-------------------- Now, since I put reality on the back burner, my days are jam-packed and fun-filled. ..........lily tomlin as 'trudy' Posts: 2503 | From here | Registered: Apr 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
I think most people want a quick fix and or would rather have everything in black or white .
Its just to bad we cant get the spirochete to cooperate
One human body is different from another but all are basically the same as far as we need to eat we need to sleep we need to go to the bathroom we are different colors. But none of us do it at the same time. Its all biologicaly based all of it. Everyone & including Bb
If it wasnt We would be carbon copies and if that were so we all wouldnt be here on earth because the first epidemic would have wiped us all out.
We have to adjust how we treat {abx} each person differantly and maybe each strain of Bb Now throw in the other Tick borne germs and it changes everyones Protocol. Some slightly others alot.
All I can say is Learn and try for yourselves untill they scientists or some layperson gets the right answer.
Nothing in Life is easy
Glean seperate the chaff from the wheat for ourselves.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
LymeNet is a blessing, the support that this group has given has helped me through some rough times & I know I can always count on them. (also ditto to all the posters above)"Keep up the good work LymeNet" Robin
Posts: 139 | From Panama City, FL., USA | Registered: Jun 2005
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