Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I am tiring myself out. Between staying on a treatment schedule and worrying about my treatment schedule and whether it's even working or not, what other coinfections I have that I should be treating, reading horrifying Lyme stories, getting confused by all the things that people say worked for them or didn't work for them, antibiotics in general, what's going to happen to me, why I feel dizzy and why does my neck hurt and why am I still shaking...I am spent.
My floaters are back. I can't sleep. I am emotionally paralyzed. I'll take my meds at 7:30 PM, not be able to sleep, know that I have to take another dose at 7:30 AM and then try to sleep but I won't, I'll stay up to get that next dose in and then...eventually collapse for 17 hours.
Then I'll read something from someone who says abx almost killed them but they did rife therapy and got all better, or that bees are the only thing that can save us.
I haven't left my house in three weeks. I haven't taken a shower in four days. I am losing it. I am burning out on treatment and I've only been fully treating for two months.
One LLMD told me that I should be starting to feel better but I do not think I feel better at all. I'm trembling nearly all the time. I can't think about anything but Lyme disease and whether I am doing anything right at all.
Would someone just swing by here please and tell me it's gonna be ok?
Posts: 2057 | From Florida | Registered: Feb 2015
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Jordana,
Yes, indeed, it all can turn out to be okay.
For today, right now, prioritize. Food, shower, refresh bedroom (even if just to straighten the cover). Get some daylight into your eyes, even if through an open window.
Prioritize each day right now and maybe take a computer break -- or in increments. If you spend web time, do it on a nice cooking site for healthful foods. Christina Cooks is one - with variations workable.
First things first. Shower before computer. Food before anything. Let in some fresh air. Listen to a little music and dance even if just swaying while holding onto a chair.
You have a human body. Start with the pyramid for the hierarchy of needs: food . . . etc.
You have a plan for your protocol from a LL doctor (I assume). You have to give that some time.
Take care of you body. IMO, it's not time to jump into the white water of "what if's" " what else" right now. Stay focused and
add some enjoyment with a travel video, or something off line.
Hugs to you -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- One (of many reasons) a computer vacation is suggested is that [oh, I'm just too tired to verbalize it]
the brain does kind of get locked into it and it zaps energy to do other things. I'm in that trap a lot, myself, with computer right next to kitchen, it's "handy" while attending food, waiting for energy to arrive (but I think it drains rather than recharges).
Try scheduling time, perhaps. And then turning it off. I'm working at that, myself.
It can be a warp, though (word choice?). It connects us to other yet also can steel away ability to do other things.
So much information can paralyze. You can revisit it later. Let your brain get away from the screen and it can process better.
Maybe start a new hobby of sorts, even just singing old songs you used to like, etc. Tai chi?
Change the view even if just in your home. Look around. You will find things will change. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Jordana, I think the trick is finding the treatments that are going to work for us. We're all different in how we respond to anything. Even if you read that others are helped by something, it might not be right for you. You need to be paying attention to whatever you respond positively to.
For floaters, drinking mangosteen juice stops that and every other Lyme eye symptom as well. I like the Mango-Xan version, as it's the most tart. In health food stores and online. It's an extremely anti-inflammatory juice, so very good for us.
Have you seen a good chiropractor for your neck? I get a lot of alleviation of neck symptoms that way. Dizzy can indicate C1 or C2 subluxation. I'm not a doctor and cannot tell you what's wrong with you, but a good chiropractor could check you out.
Have you tried taking benadryl to get sleepy? I used it for 30 years and now it's not working anymore for me, but 30 years was a long run!
For your mental health sake, I suggest you think of something you enjoy - one thing, two things, whatever they are, and put some of that into your day, even if it's just looking at that topic online.
Even though Lyme gets us, I still think we have the right to enjoy something of life. It can give you a break from thinking about all the treating.
And just to anchor in a change, sometimes I make a daily chart of the change I'm including into my life, like every day, for example, I would require me to do one thing I enjoy and write/record it,
so I can look back at my week or month and see that I did it. It's a way to build a new habit and realize we are putting something of quality back into our life.
Posts: 13117 | From San Francisco | Registered: May 2006
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I agree with the priorities. A shower or epsom salt bath will make you feel far better than 15 minutes on the computer.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Thanks for answering me, both of you. And you too, Lymetoo
I keep trying to ignore the fact that my body does not feel like mine anymore by spiraling into the internet or sleep, one or the other, really. I can't talk to my friends or family much about this because it's so foreign to me and to them.
The tremors are what really get me, worry me and fill me with increasing anxiety because it's the one thing that should go away with treatment, so I wonder endlessly if I'm treating the right thing, treating Lyme not a co-infection first -- but really I just haaaaate the shaking. It was my first symptom and if there is no relief from it I can't trust that I am somehow getting better or solving anything.
I'm not getting worse, either, I guess that's a good sign. I am herxing, another good sign.
But a person's existence when they're treating Lyme is this horrible trap. I can't plan the future because I don't know what it's going to be. I can't exercise. I can't work. I don't have anywhere to aim my energy but anxiety, and treatment.
You're right though, reading about everybody else is a type of information but I'm not everybody else. I have no idea what works for me. Nothing so far.
Keebler is right too. I have to get some normalcy back here, like wake up, shower in the morning, be a person. I think just getting a regular rhythm in my tiny days, with daylight and night-time, is a thing to work on. I'm not bedridden, I'm just too anxious to do even the things I could do. Sometimes I'm literally afraid to move.
Posts: 2057 | From Florida | Registered: Feb 2015
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
With lyme, the first symptom to come is the last symptom to go. So, that means that you can't expect this terrible shaking to resolve right away.
The last symptoms to come are the first to leave. These are the "rules" of this disease.
Evidently, the last symptoms are the least entrenched in the body, so with treatment they can be expected to improve rather quickly and disappear.
But your first symptoms are the most entrenched. So, they will NOT leave quickly even though you are receiving proper treatment.
I hope this gives you some peace. This way you know that treatment does NOT get rid of all symptoms at the same time. Nope. They leave in a certain order.
Some quotes for you:
"It is clear that in the great majority of patients, chronic Lyme is a disease affecting predominantly the nervous system." (page 4 of Burrascano)
Under the heading of "Bartonella/BLO":
"Obvious signs of CNS irritability can include muscle twitches, tremors, insomnia, seizures, agitation, anxiety, severe mood swings, outbursts and antisocial behavior." (page 26)
Also, page 29 gives you a list of supplements for those with neurologic symptoms. Some of these could be very helpful to you if you have not already considered them.
Perhaps at some point you will want to ask your doctor to try bartonella treatment to see if you get more "bang for the buck" treating that disease--especially if you think your worst symptoms line up with bartonella rather than lyme.
A good lyme doc treats first the disease that is bothering the patient the most.
I don't see a down side to even trying bart treatment now for a few months. Lyme is a slow grower, so if you have to take a 2 month break from treating it, it should be no big deal.
Are you on Rifampin? If not, here is a quote from "The Lyme Disease Solution" page 363:
"Anxiety is one of the major presenting complaints of my new patients with lyme/TBDs....
The antibiotic rifampin can often be extremely effective in treating severe anxiety symptoms that are due to lyme/TBDs. Severe anxiety is often a clue to the presence of Bartonella/BLO and rifampin is one of the most useful antibiotics against bartonella/BLO (and also happens to treat ehrlichia, anaplasma, lyme, and several other organisms.)"
Posts: 9931 | From Maryland | Registered: Dec 2007
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Thanks so much for reminding me of that TF;I actually have read that is the case which means this symptom is going to be here with me for a long time if it's the Lyme. I keep trying to calm myself with that thought when it gets bad.
Because symptoms overlap so much I have such a hard time differentiating between bart and babs. I have both global headaches and head symptoms and all this twitching but mostly at the neck and shoulder region so it's nearly impossible to tell.
Because I thought maybe babs was why I took on the intracellullar zithromax as my starter combo so I could add an antimalarial once I got it on board. I want you to know I am listening very carefully to you -- you're the one who convinced me to stop "low dosing" and go for higher dosages, which are really not bad once you get going, especially since obviously I'm going to feel like crap either way.
Rereading that page reminded me --SLEEP-nap,no stress, no walking for exercise etc. I have got to get a grip.
Rifampin is a good suggestion too. We almost did that one the last time I talked to the LLMD but I was so focused on babs during that conversation. I just keep going back and forth on that.
Stress and sleep deprivation makes this worse. To ponder tomorrow. I listen to all you guys, you know. That's how I made it into treatment, at all.
Posts: 2057 | From Florida | Registered: Feb 2015
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
Hang in there Jordana. So sorry you are going through all of this. I think the worst thing about tick borne illness is what it does to our nervous system and psyche. And without our family members and the public having a clue of what we experience (they can't!), we end up suffering in silence and feeling extremely lonely.
I agree, it is all so overwhelming reading about others' success and failure stories. We are all affected so uniquely with this nightmare. There are 'emotional herxes' that many of us get while treating. Perhaps that is part of what you are experiencing as well.
I also think the less hope we have, the harder it is to get well. Let your LLMD know the trouble you are having sleeping. Once you are getting enough sleep, you may find that you feel loads better. Without adequate sleep, everything falls apart. Perhaps Benadryl, melatonin or even something like Trazadone will help you.
Posts: 2386 | From New England | Registered: Aug 2011
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Thanks dbpei. I have klonopin but it basically doesn't work anymore. I think I'm going to order melatonin. I can't handle ambien, it makes me insane.
Posts: 2057 | From Florida | Registered: Feb 2015
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
I have had to do baby doses of xanax...jordana i burst into tears today after my 8th bee sting (of 10) and was wondering am i just insane
. Having rifed for bart has slowed the twitching ..also the iv meds have been very hard to learn cope with ...so i too think i am going to hard ..i want to not wakeup some mornings and i do and cant fall back asleep.
I just got a plasma rife and gunna pause for bart treatment i did get some alinia for babs idk overload so a friend saw thee doctor h ..her protocal makes mine look like kids candy.she is on dapsone, rifampin,zith,iv rocephin, urisidol ,diflucan nystatin and plaquinil loads of supps with added ozone and bees
i just confirmed bart ,and found some blood parasite (proto?)toxo)?
Turtle wins the race but i want normalcy too. Hugs as we are just starting this hard hard road
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I read those Dr. H and Dr. J protocols and think man, I am a goner, I am not doing anywhere near enough of anything. My LLMD thinks I'm on "aggressive treatment," and I'm like whaaa? They're mainlining six different drugs for this in the Hudson Valley.
How is anyone living though rifampin AND rocephin AND Dapsone?
I keep wondering if I should do IV but honestly I really don't think I could manage that line myself. I'd be really worried I'd end up killing myself somehow messing it up.
Posts: 2057 | From Florida | Registered: Feb 2015
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
1. I know you are a great researcher and that's usually a good thing. But sometimes it can be too much. I didn't research every single thing I took. Sometimes I just took it. Too much research can be paralyzing and exhausting.
2. Keep telling yourself: this is a marathon, not a sprint.
3. There is no way with Lyme that you can know exactly what to do. There is no one right treatment. You are taking positive steps right now towards better health. That's a really good thing. Keep telling yourself that.
4. You just need to try things with Lyme. Sometimes they work, sometimes, they don't . Sometimes when I get overwhelmed, I tell myself that it is good that there are so many things still to try.
5. When you can't sleep, tell yourself "I have had horrible sleepless nights before and I have managed. I will manage again." I find that's a much better thing to think than stressing over not sleeping.
Posts: 1737 | From Virginia | Registered: Aug 2011
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I'm a little better today. I am doing *everything I can* is finally what I told myself.
Full moon, eh.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
Glad you're doing better today, Jordana. I said a prayer for a miracle healing for you just now.
Posts: 696 | From New York | Registered: Aug 2006
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Jordana
Frequent Contributor (1K+ posts)
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posted
. Thank you so much WakeUp.
Posts: 2057 | From Florida | Registered: Feb 2015
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