posted
I posted yesterday about what's going on with me but noone responded, so I'll just give a short story.
Started Malarone 2 weeks ago and since then have been in bed with crippling depression and intense panic attacks, sound and lt sensitivity and nerve burning, terrible headache.... as well as other symptoms.
On days I don't take it, I get the vertigo along with tingling, symptoms I haven't had since I was first infected.
Spoke to my Doc today and he took me off the 1/4 of a pill of Malarone.
He wants me to add Art instead, says it might be easier to work my way up. Says that when he starts Malarone that it can lay people up for days and that is whats happening.
I feel like I am taking a step back. I feel like a failure. If this is what i need to go through to feel better, maybe that is the best thing to do. It's obviously doing something.
No, I didn't express this to my doc, I guess, at the time I didnt think of arguing. I told him I was concerned that if I go off it, I will get those other terrible symptoms I had on the days I was off it, and he said the Art should take care of that.
I just don't want to do this anymore. Im sick of hoping for a normal life and it never coming to fruition.
Posts: 319 | From nj | Registered: Jul 2008
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merrygirl
Frequent Contributor (1K+ posts)
Member # 12041
posted
I am sorry no one responeded before.
I dont think I have much information to offer you , but wanted you to know that I care. Malarone and mepron can really cause some bad depression. I dont know any tricks around it. Are you on any antidepressants? that may help until you are feeling like yourself again.
You are not a failure. depression likes to make us feel guilty. try to hang in there I know its hard.
pm me anytime... hugs. melissa
Posts: 3905 | From USA | Registered: May 2007
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First you are not a failure! You can't fail unless you fail to try. You tried the Malarone it wasn't good for you right now. The "cure" might get worse before it gets better but it shouldn't kill you.
Maybe you could try a different med at a low dose and ramp up in addition to ART.
I can certainly relate and emphatize with "you not wanting to do this any more", but quiting is not an option for me. Some days, especially lately, I have to say that to myself over and over again and I am on antidepressants.
Melissa may be right antidepressants may help you over the hump. Anyway just know there is lots of people that care about you (I am one of them). Keep in touch with your support here and anywhere you can get it from (legally of course LOL).
-------------------- "Courage is the mastery of fear-not the absence of it."-Mark Twain
Still trying hard to be brave...Deb Posts: 82 | From Upstate NY | Registered: Oct 2003
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posted
I think all Lymies can relate to how you feeling right now. I am sorry you are having such a hard time. I can only say, keep trying to find the light at the end of the tunnel... for me the light is looking forward to having good days.
I have been treating for a year and I don't feel much better, but there is only two ways to handle this disease. Don't fight and let it beat you, or be prepared for a long hard fight to get better.
Some days I feel weak and would rather give up, but my daughter's blue eyes keep me wanting better. I actually just started an exercise program, nothing hard, but something to maybe help me in my fight.
Try to remember the things that keep you going. Try to remember you are working towards a goal, of being 60, or 70% better. You can do it!!!
Posts: 893 | From Florida | Registered: Dec 2008
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posted
thanks ladies, I really appreciate the kind words. I know its tough and feel like I want to endure the horrible in order to get better. If there is a light at the end of the tunnel, then I want to get there, even if its a horrible road.
I just dont want to get off the road, which is going off the malarone will do. (at least its how it feels)
I think i want to stay on the malarone and just get through this. That is, if this will pass. I just don't believe the artemisinin will work or as well as the malarone.
Not to mention going on new meds is really hard for me and the idea of starting a new one now seems impossible,especially after all ive read about the herx from art.
Ugh, this sucks.
Posts: 319 | From nj | Registered: Jul 2008
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julielynne4
Unregistered
posted
"Crippling depression" is a darn good reason to go off the meds or cut back on them. I know it is hard to not want to stop something that is potentially working - but it sounds like your doctor knows what he is talking about.
If adding the Art will help you without as many of those symptoms you have had recently, that would be so much better. In my opinion, we sacrifice so much as we try to get well. We do not need to be also sacrificing our mental health and ultimately, our lives.
Depression alone can make it impossible to get through a day. I am on antidepressants which do help me quite a bit, although I know a lot og people who don't agree that people with lyme should take them. I personally recommend them to people who are severely impacted by depression.
I have not been on Malarone, but am on Mepron. I have been through many of those symptoms you mentioned, and it was hell. I think being on antidepressants really helped me.
I hope you are feeling better right away and that you see good things happening from the Art. JL
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posted
laurisabelle222, I had a CRUSHING day today myself. I had a breathing incident in which people wanted to call 911 but luckily I avoided another trip to the ER. I realized I have to make a long term plan because I've been living with my parents for 4 months and I just can't keep seeing how it goes--cause it's gonna go long. I feel like I just keep sliding into the pit despite my best efforts and everything I've had to work so hard for in life--and it aint much--is being taken away bit by bit.
BUT there's nothing to do but keep trying and tomorrow things won't seem as bad. These low points, like everything with lyme, come and go.
Just wanted to let you know you're not alone with the sadness tonight. I hope you can cheer up a bit before bedtime.
Posts: 702 | From North Eastern USA | Registered: Dec 2009
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posted
Julie- I think you're right. Last night I was crying hysterically, calling my doc to beg for help, yelling at my husband and this keeps happening daily and Im spirling down. I thought this was what a herx was supposed to be like and thought it was temporary.
I will give the art a try starting tomorrow. Can anyone tell me about it? Or what to expect? I guess it won't be as bad as this, right??
Sickpuppy- I know how that feels, to have a breathing attack and feel going to the er is the best thing. Im glad to got through it.
I understand what you mean about feeling like your life has been taken away. I feel that way too. I know many have been sick longer, but this past year and a half has been mostly hell with some months of feeling ok sometimes.
making a longterm plan is a good thing. it gives you some control over your treatment and life, something we loose so much of with this disease.
Posts: 319 | From nj | Registered: Jul 2008
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posted
If you're a failure for having to cut back on meds, then all of us have "failed" to at one time or another.
It's just a lengthy process to go through .. this treatment of Lyme. (or babs, bart)
I'm sorry too that no one responded to your other post. I didn't see it myself. If that happens again, just bring the post back up by "replying" to it!
PS... art is what finished off my babs.. took it along with zith. It's very effective.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Hi lymetoo thanks for the advice and kind words and no worries about replying. I understand there's alot to read on here.
I know this is a long process and am okay with it, but i guess I felt i was on the right track with the malarone, that i was herxing, so it was killing the buggers which made me feel good.
I guess I wonder if I am being a baby.
Last yr when my other dr. put me on bactrim, I had the SAME reaction- but he took me off bec of that reaction mainly bec of how much I complained about it.
I guess I dont want to make the same mistake and want to deal with and endure the herx to get better.
I just posted above about art. Can you tell me about it?
I mean I am realllly anxious beginning new meds so I assume it wont be as bad as what im experiencing recently with the Malarone.
Right? I mean if this is my babs herx, then won't this be the herx from the Art?
Posts: 319 | From nj | Registered: Jul 2008
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I never took malarone but these bugs can make you nuts. They do effect your mind - even if you are a pretty balanced person.
Dealing with this is not easy. You are not alone.
Even if the drugs or the bugs are effecting you, there are things you can do to get better perspective on yourself. Maybe try reducing the dosages of the drugs or herbs, get some kind of meditation cd, try to relax, take a hot or warm bath, drink lots of water...?
There are many meditation cds if you search the internet. I do find that it helps me to relax & not be so anxious.
Herbs can be as strong as drugs. I don't think it's helpful to make yourself ill from taking a "cure". Just go slow & don't force your body to heal.
It's a process. It can take time & adjustments.
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Babs herxes were my worst.
I swear by MSM to help ease babs herxes.
I swear you will fell MUCH better after babs is killed.
Many here, after getting their babs down said the same. I read that on and on.
It's the first big step to feel better. Borrelia fight is much easier (even if it can last longer) than babs fight. I mean, my borrelia herxes were always less intense than babs.
And babs affect our emotions in ways that I could never imagine. Add herxes to it, you feel down the hole.
But almost for sure, everyone that overcame babs can say that it was a big step up in healing!!
Crossing fingers for you! Hang on!!
Posts: 6200 | From Brussels | Registered: Oct 2007
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Dont feel that way just stick to your guns and never give up!
-------------------- 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
Hi sweetie, I just saw your post and didn't see the other one.. I have to run (yeah-really-lol----more like crawl)to work (: but I wanted to send a quick message. I will try to PM you tonight when I get home,
But what I want to say quickly is of course DONT GIVE UP. I have been in treatment for almost a year and I have been there.. done that...if you were to research my previous post you would see I had one similar to yours less than a month or so ago.
There are ok days and then there are TERRIBLE days where you just get tired, mad, fed up, etc and feel like you can't or don't want to do this anymore....but you have to.
NOW........
For the bright side of the coin.
I have learned the hard way---if you aren't doing well on something move on to something (another medicine, supplement etc) else.
My LLMD has had me taking Artemisinin for almost a year.
I have BAD lyme bart and babasia.... For months I took it (art) all the time now (for about last month or so) he has me pulsing it (1 week on 1 week off)
He wanted me to start menpron last month but there is NO way I can afford it so I am back to Bactrim Ds... I tried Rifampin for a short time also.
My point is and I even posted this before I think is somehow in the back of my mind---even when I was at my lowest point I told him (my Dr) that I thought the art was helping me--even if I didnt know how--just something in my gut was telling me. So he kept me on it.
Sometimes you're on so much stuff (I take 18 things twice a day and some inbetween ): ) that you cant tell what is helping and what isnt..It reminds me of trying to shoot those duck at the carnival.
SO PLEASE try the artem with a open mind...it could be one of the "miracle" drugs for you...wont cure of course but help alot (:
A HUGH word of advice...I dont know how much you are planning on taking but I would start off SLOW. I think I started with 2 -200mg twice a day and it was "sucicide" I had to drop back to 1 a day then 1 in am and 1 in pm.. I now can take 2 am and 2 pm..
DONT try to take too much at once..I think we all want to go in head first screaming and yelling at this stuff and then we get knocked off our horse...if you get my meaning.
I am finally learning (as my LLMD tells me EVERYTIME) we meet as I get ancy and want to "blast" this stuff----this is a marathon not a sprint---and you cant just win the battle you have to win the war.
Someone else mentioned MSM.. I have been on that as well...not terribly expensive and I really think that helps me as well.
I think the supplements have helped me VERY much and are quite necessary.
You just have to try and see what works for you...I hae tried numerous things and I told my Dr I truly believe if someone put a pile of dog poop in a bag and told us it would help us (Lymies) we would buy it--lol
So just be careful where you put your money--we only have so much to go around.
I sure hope this has helped. I WILL be in touch again. Good luck and God Bless,
As for the art..my LLMD has me taking Allergy Research Group. Some things (supplements) you might be able to get away with cheaper products but some I personally think you get what you pay for.
Karen
Romans 5:5 And hope does not disappoint us, because God has poured out his into our hearts by the Holy Spirit, whom he has given us.
Posts: 423 | From Virginia | Registered: Nov 2009
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quote:Originally posted by laurisabelle222: Right? I mean if this is my babs herx, then won't this be the herx from the Art? [/QB]
I'm not sure what you mean.
Malarone treats babs too.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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lymeladyinNY
Frequent Contributor (1K+ posts)
Member # 10235
posted
Hi Laurisa. When I first started art I had acute respiratory distress because I took too much of it at once (300 mg). I would take it really slow. I am now up to 900 mg daily, 3 days on, 4 days off.
I know how you feel as I needed to call my sister yesterday just to get some perspective. I told her, "I don't want to live anymore" because I was feeling like I will never, ever get better and I was having a terrible day.
Unfortunately, I have picked up a virus that I believe has caused a mild meningitis. Add that to babs/bart/lyme and feel yourself spiral!
I am still very sick today, but my sister told me yesterday that this disease has always been a rollercoaster ride and the lows are always followed by improvement. I've been sick for 7 years and she's been there with me through it all.
She remembers more than I do about all I've been through. She said after all this time I AM better than I used to be. The same can be said for you, too, someday, I believe.
Keep the faith. You have a lot of friends here.
- Julie
-------------------- I want to be free Posts: 1170 | From Endicott, NY | Registered: Sep 2006
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posted
I just wanted to thank everyone for the kind words and the support, as well as the cute pics. It helps to feel not so alone.
You know it's funny, because I have never had a bb herx at all, which makes me wonder... maybe I just have a bad case of babs and bart....
So for the art, I was thinking of opening the capsule and taking half- which would be 100mgs for the first few days instead of the 200.
My Doc seems to think this might be better tolerated for me so I am assuming the herx won't be as bad with the art, compared to what Im experiencing now, right?
I know you can't possibly have the answers but im terrified to start a new med.
I really do appreciate all the responses and support. Posts: 319 | From nj | Registered: Jul 2008
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Malarone can cause awful anxiety and depression in some people, that is a fact. So can babs.
Other treatments, like clindamycin and quinine might be easier for you. Unfortunately, none of the babs treatments are 'easy' for all patients, but like the AmEx commercials say, feeling better is priceless! Hang in there, you will make it.
Posts: 2557 | From home | Registered: Aug 2006
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posted
Oh, so it might actually be the malarone causing a side effect and perhaps not the babs?
Posts: 319 | From nj | Registered: Jul 2008
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i think we all have been there. i know i have. sometimes just standing in the shoer and crying my head off helps.
yesterday was especially bad with skyhigh blood pressure, massive headache, and really bad liver and spleen pain. sometimes it just gets too much..
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Haley
Frequent Contributor (1K+ posts)
Member # 22008
posted
I hate to see people discouraged but yes it does make you feel not so alone.
I had a meltdown myself today. I really have not had one yet. Something triggered me and I started sobbing and thinking about life in the past and in the present. I don't usually break down and cry but I think I had been holding it in for a long time and it needed to come out.
The thing that blows my mind is that all of this misery from one little tick. I feel like I'm being tested.
How is it that a bacteria is smarter than any human being on the face of this planet? How does it know to hide from abx.
anyway, hang in there it's a long road but it does get better.
Posts: 2232 | From USA | Registered: Aug 2009
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posted
So sorry to hear you are under the Lyme weather. Hang in there. This process is so slow and unsteady. much like a spazzed out bunny hop 1 step forward...oops fall down go boom...1 step to the side... oh 2 steps back... oye vey! The people on this list serve have assured me it gets better and I will pass that on to you! Take Care. Blessings, Just Jan
-------------------- I used to be marblenose but my lymebrain could not remember what email account I used to sign in so now I am just jan... bit in 1994 diagnosed in 2004 I have tried every anbx and alternative known to personkind.
NICENESS COUNTS!! Posts: 61 | From orange county new york | Registered: Jul 2008
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