dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
themselves out. Yes, been avoiding lymenet nor answering posts. Why?!!
People have got to stop freaking themselves out...
Stop reading the RX sheet...
we have to keep those away from my mom too.
She will do a medication be fine until she reads the info sheet & miraclously gets EVERY possible side effect.
Seeing the same syndrome here.
It's okay to question dosages but stop freaking even before you even try it.
Please please...do you want to get better???
Please stop self-sabotaging your healing process.
There, said it & I'm gone.
Keebler, you are a rock & are so caring not to pull you hair out
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Well, actually, I think it's important to read all about something before taking it - but mostly to know how to support the body to best handle it. This is vital for those with inner ear issues regarding drugs that can be toxic to the ears - but where liver support can make a huge difference.
Or, if there is a contraindication, to find what else might work.
I've had enough drama for my lifetime so I'm just worn out. I don't "do" drama anymore and wish I could get back all that wasted energy for times when I freaked out. With limited energy, too, there is just none alloted to any degree of a freak-out.
But, I can see how scary this all is for those new to the world of lyme/TBD. The hardest thing is to accept that we are essentially in an alien body for a while. Everything is different and will be for quite some time to come. Breathe. Just Breathe.
I think many are not informed of just how bumpy the road will be. I wish I had known that it would be a long, rough ride. I could have better prepared myself mentally for that. I held my breath for a long time before I realized this just wasn't OZ anymore.
Then, step by step, I learned to hold to "normal" where ever and however I could. We need to know that this new normal (even if strange) can lead to a better normal down the road. I may as well relax for the ride, breathe, and
let the healing process work. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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onbam
Unregistered
posted
Accepting advice without researching it for ourselves is what got many of us (myself included) here; we need to learn everything we can about the curses of action we pursue. How productively we react to this information we get to determine.
That being said, those who've read my posts known that this is an area in which I can be pretty sorely lacking
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posted
I'm one who can read all about an illness or heart condition (my own) and all the drug info and be just fine with it. I feel armed with knowledge and actually feel "safer" by doing that.
Now my husband is another story altogether!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I think its important to read the side effects when you start a new med so you know what to expect. Some will have side effects from meds and not realize it is a side effect because they did not educate themselves.
So I think educating yourself is important. No one will take care of you, but you; so its important to be your own advocate.
People that freak out just need to realize that "everything" you take has possible serious side effects; even tylenol. I think about the side effects of not taking medications. That too can be a serious issue.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
Unfortunately people with Lyme Disease often suffer from psychiatric symptoms. This can range from incredibly severe depression, or severe anxiety(about taking a new med).
I wouldn't expect patients with severe psychiatric problems, or....trauma from having previously experienced a severe drug reaction to handle these things well. In-fact it's best to always expect them to struggle and to respond with hysteria.
Try to avoid reading posts about other people's fears and anxiety if it's upsetting.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i found out i have to know the side effects because, like most lyme patients, i react to all meds differently than other people.
once i didn't follow up because i thought i was being "stupid and silly and overreacting". well, come to find out, it was a morphine rash and i am allergic to morphine.
talk about finding out the hard way...i'm lucky i didn't up in the er or dying.
so now i read everything.
some people may overeact, but in my case, i'm better off.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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Tricky Tickey
Frequent Contributor (1K+ posts)
Member # 26546
posted
I think I just got severe depression after reading the original post.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
I just had hung up phone w/young woman who was freaking because someone from Lymenet told her that "ooo, Mepron causes depression etc.." Her doc had just RXd it for severe babs.
She was freaked because of this person & is freaked reading the (I say well-meaning)lymenet posters who write their freaking out emotions.
She decided to stay off LN due to so MANY negative medication posts. She said reading this "advise" has tipped her over the edge.
She said the "not listening to their llmds" but reading advise that goes against what the llmd have told them is upsetting.
I had to agree with her. Explained she wouldn't know how Mepron works for her till trys it.
That's in essence what I meant about "stop freaking" before even trying what the Lyme Literate Medical Professional prescribed.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Education involves lots of different sources. LymeNet can be helpful to some - and clearly not to others.
Most days, I find this depressing. But it's because I see how horrible lyme/TBD is when people don't get all the education and medical care they need. The answer is not less education, but more. But, it's also important to gather what is needed and then step back out to life. It can be overwhelming reading about so many who are having such a hard time with all of this.
And I, too, have had my fill of the word "herx" being used when it's really just the way it feels to be going through all this, not necessarily a "herx" - but a "herx" can be on-going and it is just the way it is, sometimes.
Still - whether it's called a "herx" or "feeling horrible" - I find that the harsh reactions can often be lessened with the right information and support methods. As least there is something than can help.
Not "freaking" has to do with how one manages their reaction. I WANT to know if a certain medicine may cause depression because then, I could do what was needed to prevent.
I'd look at WHY - usually it has to do with added liver stress or actual depression of the central nervous system. So, with enough liver support - and magnesium - and maybe good support for the central nervous system, depression does not have to be a side-effect, or - if I know it may be but really need the medicine - I can just plan that my mood would be a bit low for a while and then remind myself to weather the storm.
I think we need to know as much as we can about side effects but, I never freak. I feel empowered. I can be proactive where I can be and more understanding of and compassionate with myself where needed.
"Freaking" is not just from being educated. It's how we move forward with that information.
As I deal with 2 kinds of porphyria (liver dysfunction), multiple chemical sensitivities - and a vestibular system that just can't handle anymore ototoxic substances, education is vital. However, through that I learn about support methods - or other ways to achieve the same thing.
Any drug that can cause or increase depression - well, I think it is important for the patient to know that could happen. Then, planning to advert that can make a huge difference in the person being able to complete the course of treatment knowing why they may be feeling blue -- & knowing what can help lift that.
It's about balance. If we know a boulder is going to tip the scales, we fortify where it matters most. We don't go without treatment but we can figure out the best ways for that to work.
I think most lyme patients need to know MORE about side effects and how to manage those. So many come here and think that, with a couple weeks' medicine, they should be back up to speed.
If they knew earlier on that this can be a long and rocky road, they would be better prepared on all levels.
Liver, kidney and ear damage are also very important matters to consider with any drug, even OTC products. Knowing that - and working with it, or around it - can save lives.
Back to the topic at hand: FREAKING OUT 101 -
Knowledge is power. True. But it's how we accept it and work with it that makes the difference.
* Avoid depressing situations
For those who are sensitive (&/or prone to heightened emotional reactions), there are other places to get information without the discussion bulletin board. Professional literature would be the place to start there.
* Look to the light.
Find Tai Chi or Qi Gong groups, Restorative Yoga or Gentle Pilates --- groups that focus on gentle healing
Find hobbies, music, art, love. Find life - even if as a spectator.
* Cognitive Therapy
As for those who "freak" - or who are even are just uneasy - cognitive therapy can be a wonderful tool for changing how we accept and interpret information that can stress our emotions.
* Adrenal support
can help tremendously as when that system is so stressed (as with major infections), it's very hard to manage what could be perceived as threatening information.
* Medical hypnosis and guided visualization
are also splendid tools that can turn into self-regulating techniques for whether we see the glass as half-full or half-empty, or full of pebbles that need a bit of sorting out before we proceed.
Education is still the key; how we accept that and interpret it determines how we move forward through the door and what direction we take. -
[ 10-04-2010, 12:30 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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METALLlC BLUE
Frequent Contributor (1K+ posts)
Member # 6628
posted
DMC, I understand what you're saying. Basically, Lymenet isn't going to change since so many people are afflicted badly -- both in suffering from their illness as well as having negative reactions to medications which often traumatize them. This need to share their traumatic experience can be difficult for other people to stomach, especially new patients.
The best advice we can give new patients is telling them that they need to turn to the packet insert given with their medication, as well as their LLMD for crucial information. They should also ask what other patients have experienced but be aware that most people who respond are going to respond with negative experiences since those are the people who most often have a reason to respond to threads about a particular medication. They don't want other people to suffer like they did, yet at the same time their trauma should be weighed by the person seeking information. They have to judge for themselves whether the reward to risk of taking a new medicine is appropriate.
The new patient is the one responsible for collecting the information and then filtering it.
I wish it were easier, but it's not.
-------------------- I am not a physician, so do your own research to confirm any ideas given and then speak with a health care provider you trust.
When I was first diagnosed last year, I joined this Forum.
But I didn't come back on this Forum until this fall. I am not sure why.
I just know that now it is a life saver for me! It has helped me a lot. I was so lonely and discouraged and this forum just cheers me up and encourages me.
There is so much great information here that has been so valuable to me. I have been able to send this info to relatives to help educate them. And who knows, it may save someone from suffering like us.
This is such a valuable forum.
Everyone here is so wonderful and patient.
You all may not know me very well, but I feel like my room is filled with kind friends when I read the postings. It sure takes away my incredible lonliness.
Keebler and others have such informative posts. I often am amazed and impressed at how hard they work for the rest of us.
They find the most fantastic articles and websites.
Some of my own family have betrayed me during this , so this place means a lot to me. It really cheers me up.
Some people just aren't ready for this Forum at the beginning of treatment, just like I was.
I am actually so much sicker now than I was last year too.
I didn't understand a lot of things then either, and I think because of my neuro symptoms that I had, I just couldn't handle it.
I continued to go downhill all year, getting sicker and sicker, lonlier and lonlier.
The only thing I remember reading here was a post about people saying that all they accomplished that day was walking the dog or doing dishes or something like that.
It kinda shocked me for some reason because at that point, I was still able to do everything, I just had odd symptoms and pain.
maybe that person is in shock too and is scared. It is scary.
Now that I am bedridden this place has kept me from giving up entirely, because I can't understand why I keep getting worse and worse.
dmc--I think a lot of us are on our own with coping and figuring this all out. It's not like we can all go to our local hospital for extra support and education , the way a cancer patient might.
I live far from any support groups and have to fly to get to my LLMD appointments. This is the only help I have and I appreciate it tremendously.
I am not sure if this makes sense, sorry, plus my original reply got erased!
Thanks from Missing!
-------------------- I am not a doctor. I have no clue. Posts: 606 | From somewhere out there | Registered: Sep 2009
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dmc
Frequent Contributor (1K+ posts)
Member # 5102
posted
You ALL wrote wonderful thoughts, & perspectives.
You are compassionate & kind. I must remember others do not have support nor even abilities to cope due to these tick illnesses.
You guys have reminded me much more kindly than I did in my orginal post.
Each one of you while going through illness & family/life difficulties still manage to be gently helpful to others.
Thank you.
Posts: 2675 | From ct, usa | Registered: Jan 2004
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