posted
I have Lyme and Bart. Was Misdiagnosed with Fm and MS. I have a few small brain lesions. Was bit in 1989(only given 3 weeks of amoxy then) and relapsed a few times. But in January all hell broke loose and I don't know why. I have been on meds since March 06 and some times I feel better and get really hopeful and then the twitching comes back and I get terrified that the duck who gave me the MS diagnosis was right and my demise is immenent. It just feels like it's such a crazy disease that will never really get better and I just want it gone. I want the ringing to stop in my ear, my twitching to stop. I want to be one of those people I look at who are healthy and feel like I have a bright future too. Lyme just becomes ovewhelming. How do others get though this. Will I live. Will this kill me eventully? My LLMD seems very hopeful and then a while goes by and my symptoms get better than worse and i lose hope. Please offer me some words of advice or factual advice about my fears. Thank you so much
Posts: 298 | From los angeles | Registered: Mar 2006
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I have Lyme and Bart too. It took me almost a year to the day of treatment before I noticed *any* significant improvement. It was hugely frustrating, depressing, scary, etc because it felt like I would always be this sick and nothing would ever change and that I might die, or worse, *want* to die.
For me it usually comes down to the pain. I am amazed that the human body can tolerate so much of it on a constant basis. I still have the pain, but at least there's light at the end of the tunnel (not a train, oh please not a train lolol)
I don't know what I can say to you to help. I guess just to tell you that I have been there, I am there still often. There is hope. It can and does get better. But for me it took an amount of patience that I simply didn't have, so I had to allow myself moments to rage at the world.
This disease can be so invisible. On the outside, I feel like I just look like a healthy lazy person. On the inside, I am in a world of pain that would send most people to their knees. It's hard when people around you don't understand what you are really going through.
By the way, I twitch *all* the time. Heck, give me a cup of coffee and then the fun really begins. It makes being in public a bit awkward sometimes. I guess that's the Bart? Even as I'm feeling better I still get the twitching for days or weeks at a time. It's much easier to deal with now that I'm feeling better though.
I feel overwhelmed all the time. It's hard not to. But I can tell you for me that I am improving finally, and I think I've had Lyme/Bart all of my 34 years. It took a year of hard core treatment, herxing, and assorted hell, but I am finally getting better, and I mean getting better as in showing marked, continuous improvement, not all the psyche out/false hope/fake out/feeling-slightly-better-before-plunging-into-herxing-hell improvement from early in treatment, where I thought I was getting better and then would plummet.
Please hang in there -- the only way out is through -- I totally know how you feel and just wish you the best.
Alison
--------------------
The obscure we see eventually. The completely obvious, it seems, takes longer. --- Edward R. Murrow Posts: 923 | From California | Registered: Aug 2005
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bettyg
Unregistered
posted
YOUR MAIL BOX IS FULL; PLEASE DELETE MAJORITY OF IT NOW!
majority of us can't read block text posts like yours, click on link shown
click on PENCIL ICON and break up your entire post into short paragraphs for reading. use reply given as guideline butNO long paragraphs please.
hit enter key twice after each paragraph leaving one blank line between each paragraph, click on edit send button, and you are done. thanks; now we neuro lymies can read/comprehend.
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tailz
Unregistered
posted
I feel for you. I have Lyme, and now staph. I'm actually thinking of getting my picc line pulled. I've been through what you've been through with getting the wrong diagnosis and all the suffering that's involved.
I was almost dead though at one point. I'm not anywhere near healed, but I know much of my pain was caused by food reactions to foods I never even suspected. Do you notice that you feel worse after you eat or that certain foods trigger your symptoms?
The foods I reacted to were all high in copper which conducts a lot of electricity: soy, corn, wheat - to name a few. You may feel better just by eliminating some trigger foods. I also take EDTA to get rid of some heavy metals.
Try playing around with foods to see if you can get your immune system to do what it was designed to do by eliminating foods that cause inflammation. Don't give up though - your body was designed to heal itself - all you need to do is listen carefully to it.
Don't give up hope, you can and will beat this. From my own experience(ALS/neurolyme) you need long term IV Rocephin if possible for neurolyme.It really helped me and from reading posts on this site many others with MSlyme/ALSlyme.(you didn't mention if you have tried IV rocephin)
So far it Rocephin has been the only abx. to help me(I failed on several orals).Consult with your llmd and go for it, but go low and slow is my opinion as we don't want to hurt the pt. faster than the bugs.There is some controversy over this, but I think for neuro lyme you need a drug like Rocephin that readily crosses the blood brain barrier(sic?)
I am not an MD , but this is my anecdotal/personal opinion only.
I am by no means "cured" but think of your kids /friends/family and coworkers(if you are working) as the grounding force as why you need to triumph over this heinious disease.People love you and need you around
As an aside Clonazepam has been the only drug to help with the muscle fasiculation(twiches). It is often used as a sleep aid And that is where I discovered it toned down the twiches.
Take care,
Travlr1
Posts: 66 | From West Coast | Registered: Jul 2006
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posted
You guys are amazing. Thank you so much. Without people like you, I think this disease would have it's way with alot of us. I really think that people afflicted with Lyme are amazing people. They have to endure so much and always without anyone around them understanding. Wow. You guys are great.
Posts: 298 | From los angeles | Registered: Mar 2006
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I've been where you are. Perhaps I'll be there again, but I've found out that with the antibiotics, comes a whole host of other problems that make you feel really bad. I was on IV rocefin for 8 months and am now starting my second round of abx because it's acting up again.
What's really helped me besides the food allergies is keeping my yeast under control with diflucan or nystatin.
also, it sounds crazy, but detoxing with calcium bentonite clay has been really helpful as well as taking detox baths with epsom salts, ginger, apple cider vinegar, baking soda, aloe vera gel, hydrogen peroxide or a combination of the above.
good luck, i hopeyou feel better
jenn
-------------------- When given lyme make lymeade! A tick check a day keeps lyme away! [email protected] Raising awareness by creating as many lymebassadors as possible! Posts: 158 | From Northern Wisconsin | Registered: Oct 2005
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posted
I think what you are experiencing is the hardest part about having Lyme disease. It's the UP and then the DOWN.... on and on, until you want to scream!!
Every time I crashed, it felt like I was never going to get UP again. You tend to give up hope when you're DOWN. Right?
Hang in there....it's going to get better. Forget about MS....it ain't happenin'!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Hi lalyme,
I know that getting better and worse is draining confusing and scary. Been through the ups and downs for quite awhile.
Since you are under the care of a llmd I wouldnt really worry about the lyme killing you.
Many of us have had it a long time and havent died. Many of us have felt like we were dying though so we understand the fear.
If you feel your symptoms become life threatening go to the er.
Sometimes even scary symptoms are more acary than anything else. I had palpatations for awhile which scared me...
but my heart was checked out and there was nothing wrong with it.
So just make sure symptoms that could be a serious problem (lungs heart ect) are checked out right away.
Things do get better. Sometimes it takes awhile and sometimes it is slower than we would like...
but lyme is complicated.
I promise there is light at the end of the tunnel.
On my good days I can see it and on my bad I just have faith that its still there waiting for me.
I know how hard the waiting is. somedays it is harder than others.
Dont loose hope... I think it helps more than most people realize.
I truly belive that I would not have made as much progress if I didnt think getting better was possible.
lymie tony z
Frequent Contributor (1K+ posts)
Member # 5130
posted
Hey Lalyme...
the folks here are just great are'nt they...
when you're a little better and start helping others you'll start feeling better too...
all those twitches and pains may never go totally away...but will become easier to deal with and sometimes even funny!
I especially like the advice about certain bath recipes...
I like the rocky road bath myself....yep...
peanuts n icecream and syrup....boy...sometimes I even throw in some rootbeer!
wow.....true bliss.........LOL zman
-------------------- I am not a doctor...opinions expressed are from personal experiences only and should never be viewed as coming from a healthcare provider. zman Posts: 2527 | From safety harbor florida(origin Cleve., Ohio | Registered: Jan 2004
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
You sound normal!!! The only way out is through*)! You WILL get better. We've had many MS diagnoses come through our local support group (in Santa CRuz CA) and ALL have gotten better- Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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From my own experience(ALS/neurolyme) you need long term IV Rocephin if possible for neurolyme.It really helped me and from reading posts on this site many others with MSlyme/ALSlyme.(you didn't mention if you have tried IV rocephin)![[bonk]](graemlins/bonk.gif)
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