posted
Anyone ever regret going into treatment? Was your life prior to your Lyme diagnosis better?
Odd question yes, sorry.
I feel like even though I was sick and desperate for answers prior to 2019 I was happier, more relaxed and had a better even-keeled attitude and outlook on life. I've had people in my close inner circle say I'm not the same anymore.
Sometimes I think treatment permanently tarnished my life physically and mentally. I mourn my old self and think I just wasted 2+ years of my life that I'll never get back.
It seems things are only getting worse. I feel myself getting into an utter panic. No, not a panic attack but actual panic, grief and a sense of loss, anxiety and rage.
I really don't even know if this is normal in the Lyme community or something else.
Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Mountainsky,
"Treatment" made me worse also.
In a nutshell, I believe the problem is that most docs are still "treating" the bugs, instead of effectively treating the out-of-control systematic neuroinflammation (triggered by the initial infection) that is truly the problem.
Your post takes me back to my experience before I discovered mild hyperbaric, and it is heart wrenching. Please know there is much to hope for! I've been 100% well, med-free now for over 8 years.
Please check out the Mild Hyperbaric thread. Read it from start to finish if you can. You can also PM me; I'm happy to help any way.
Posts: 1880 | From Earth | Registered: Jul 2013
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
A year of treatment with antibiotics almost killed me.
I went from 115 pounds down to 85 pounds and my gut took forever to heal despite probiotics etc.
But I wasn’t diagnosed with Lyme for 18 months after the bite and didn’t start antibiotics soon enough or it might have been different.
I have permanent neurological damage from Lyme—mainly imbalance.
But aside from that and joint pain I live a pretty good life now. My healing path was energy healing.
-------------------- Hiker53
"God is light. In Him there is no darkness." 1John 1:5 Posts: 8879 | From Illinois | Registered: Aug 2004
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Ive told many people even with all this support I truly feel alone. Sometimes I dont even think this is Lyme anymore. This was an awful weekend.
I want to be honest with ppl and discuss my fears, ( what's my life gonna be like in the near and distant future Lyme and non Lyme related?), frustrations, etc and it makes more angry and overwhelmed. I then look crazy.
Maybe I'm keeping too much in and not ventimg enough?
I was literally on the phone with a friend discussing these concerns and it didn't end so well and now I feel terrible because its Father's Day.
Posts: 597 | From Massachusetts | Registered: Mar 2019
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Well, I think it is necessary to vent; this is an awful disease...but one can't expect anyone else to truly understand or empathize unless they've "been there".
Plus, it is way too easy to get caught in the vortex and stay there...it is crucial to stay solution oriented...this is a temporary situation and the goal is recovery.
Posts: 1880 | From Earth | Registered: Jul 2013
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posted
No because I know one day I could have woken up and not been able to move, not been able to speak from Lyme. Better to try to treat and prevent.
-------------------- Lisa T Posts: 42 | From madison wi | Registered: Aug 2007
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It's just bad anxiety and I refuse to go back on psych meds, I can't anyway because of the Methylene Blue. Meds never did anything for me anyway.
I'm getting more anxious and frustrated talking about it. I was fine the first hour at work this morning and it's back. I never get anxious at work, ever. This is a first. My bpm is high, my mouth and throat burn. I had more diarrhea again.
Sometimes, actually no correction....alot of the times, I don't think this is temporary.
It's hard finding a therapist that does evening/after work hour appointments and who does in person visits.
Posts: 597 | From Massachusetts | Registered: Mar 2019
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posted
No I do not regret treatment. I fear where I would be if I hadnt. However...
I am with Lymetoo and diet. If I had do over again I would have joined the Trying Low Oxalate FB group and avoided all high ox foods. They caused me so much damage. Turns out I was living on them. All stuff I thought was healthy wasn't.
And I would have started lipothiamine (TTFD). I had no idea how important thiamine is. It would be one more thing to boost your system while going through this.
Histamine also.
Posts: 832 | From Somewhere | Registered: Nov 2010
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posted
Diet never did anything for me. I tried alot of different things. I don't have a perfect diet but I eat alot better than I did prior to starting treatment 2 years ago.
Not trying to sound confrontational or dramatic, no. But all through treatment and even before ( 20 years of being sick with no answers) I had many people preach diet/nutrition, exercise, reduce stress, sleep better..yea HA! I was at at my smallest weight of 145 in the mid 2000s, did the gym faithfully, and nothing. Granted I wasn't as sick then but stuff was still not adding up.
So when I hear someone mention anything regarding diets it really bothers me. I know your intentions are 100% genuine of course.
Thanks 💚
Posts: 597 | From Massachusetts | Registered: Mar 2019
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posted
Well I did eliminate certain foodsto see . I know for a fact it's not an issue with food choices though.
Posts: 597 | From Massachusetts | Registered: Mar 2019
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posted
Thank you, but I understand and get it. I know how complicated this disease is and know my life might not ever be or feel " normal" again.
Posts: 597 | From Massachusetts | Registered: Mar 2019
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posted
My first appt with her she told me to go keto, eliminate dairy, gluten for 30 days. It was horrible and that lasted only 2 weeks lol. I lost 7lbs but felt no change. I was more depressed/anxious over the restriction of food and had no taste.
Posts: 597 | From Massachusetts | Registered: Mar 2019
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posted
You are correct about never feeling normal again.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
I'm sorry you both feel that way.
I totally understand. I also believed I would never feel "normal", and would never have my life back. Thankfully, against all odds, I was wrong. Please don't give up hope.
It is important to stay open to possibilities.
Posts: 1880 | From Earth | Registered: Jul 2013
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posted
i also think its important to keep a few things in mind
one of them is how our perspective is so important to our physical and emotional outcomes - in terms of our experience of life - and whether that is positive or negative - and it can become difficult to disentangle that when you are "in it".
things can certainly seem hopeless - when in fact they are not
things could always be so much worse
many here cannot work at all
many are bed bound or house bound
another point is that we have no way of knowing how our life would have gone if we had taken other choices -
we could speculate that it would have been better - for instance if we had not had this treatment or that - but that is merely speculation - in fact it may just as easily have been worse.
remember this illness has a random type of nature where a person can be kind of OK for a long time - then suddenly go off the deep end into a whole bunch of symptoms quite spontaneously, or after a life stressor, like small operation, viral illness, emotional trauma road traffic accident, bereavement, redundancy even a house move etc etc
i don't mean to preach or make out i am in any way better - i am not. but i would like to offer the perspective that looking back and spending energy on "what ifs" is generally unlikely to bring us anything helpful.
from reading hundreds of different peoples accounts of their journey with this illness over the last 6 years - my observation is that the people who get better tend to be those who - learn lessons quickly from their good or bad experiences, then move the focus and their energy back to a forward looking view - "what can i do today to make my situation better". even if that is only in some tiny way. these people have greater feelings of hope, control in their life and happiness.
in short they have a greater reason to live - and this is a huge advantage in powering a recovery.
we cannot choose the cards we are dealt - only how we deal with them.
I know this will sound preachy and judgemental - but my intention is absolutely only to help.
Posts: 245 | From UK | Registered: Feb 2020
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Like I said, I don't think its all Lyme and Cos anymore. I think these other sideline/backstage issues are only excharbating the disease. It a viscous cycle.
Posts: 597 | From Massachusetts | Registered: Mar 2019
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lots of downstream effects - like neurological issues, psychological issues, hormonal issues etc etc
different in every person - and very challenging
but the choices are still the same - resign ourselves to hopelessness - or forge ahead.
questions: what one thing - if you could improve it in some way - would have the largest impact on your life ?
how many things can you list that if you did them would make some impact on that one thing - if you were to start doing them today
which of those things seem like the most productive, greatest chance of success, or best bang for your buck?
Posts: 245 | From UK | Registered: Feb 2020
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Thank you again for your prompt replies and informative perspectives and suggestions. I appreciate it.
Posts: 597 | From Massachusetts | Registered: Mar 2019
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
By his thoughtful post, I sense that Garz understands that none of this is simple!
Mountainsky,
I say this in all honesty and without judgement. I know you appreciate the suggestions, but I sense that you have become shut down to the possibility of becoming well, and I know very well how that feels.
I am here to tell you that nothing is impossible, as the body has a tremendous ability to heal itself.
You don't have to believe you will become well to get there, but I do feel you must be receptive to different strategies people have used, especially those who have improved and/or become well, and are willing to share.
As I mentioned before, you can PM me, and I will help you. I do not sell anything or take payment for my time. You can do what you wish with the information, but at least you will have additional food for thought. It's all up to you!
Posts: 1880 | From Earth | Registered: Jul 2013
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posted
Just lost another relationship with another family member this morning.
This disease doesn't just take your health, it does alot of collateral damage too.
Posts: 597 | From Massachusetts | Registered: Mar 2019
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Phoiph
Frequent Contributor (1K+ posts)
Member # 41238
posted
Lymetoo,
I think this thread may be better served in "support" rather than "medical"...
Posts: 1880 | From Earth | Registered: Jul 2013
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hiker53
Frequent Contributor (5K+ posts)
Member # 6046
posted
Even after having Lyme for a lot of years, I still see a lot of improvement physically. Getting well physically doesn't come all once--at least for me.
Mentally, I am totally normal (well, some of my friends think I have never been normal )
My point is to never give up hope and keep searching and trying new things!
quote:Originally posted by Phoiph: By his thoughtful post, I sense that Garz understands that none of this is simple!
Mountainsky,
I say this in all honesty and without judgement. I know you appreciate the suggestions, but I sense that you have become shut down to the possibility of becoming well, and I know very well how that feels.
I am here to tell you that nothing is impossible, as the body has a tremendous ability to heal itself.
You don't have to believe you will become well to get there, but I do feel you must be receptive to different strategies people have used, especially those who have improved and/or become well, and are willing to share.
As I mentioned before, you can PM me, and I will help you. I do not sell anything or take payment for my time. You can do what you wish with the information, but at least you will have additional food for thought. It's all up to you!
that's a wonderful offer! Posts: 245 | From UK | Registered: Feb 2020
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