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» LymeNet Flash » Questions and Discussion » General Support » Anyone regret going into treatment?

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Author Topic: Anyone regret going into treatment?
Mountainsky
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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.

Thanks guys 💚

[ 06-19-2021, 04:45 PM: Message edited by: Mountainsky ]

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Phoiph
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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.

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hiker53
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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

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Mountainsky
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Thanks for your replies 💚

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.

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Phoiph
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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.

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Mountainsky
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Thank you Phoiph. ❤

I had MAJOR anxiety the last few days into the weekend. My night time anxiety is back. Starts around 3am.

Hehe now tell me, aren't people supposed to feel calmer and more relaxed on the weekends?

I'm at work now getting ready to clock in and I feel better.

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lisaloo
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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

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Lymetoo
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Night time anxiety could mean your levels of histamine are too high.

How's the diet?

Check list of foods that are high in histamine.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Mountainsky
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My diets fine.

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.

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Mountainsky
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And let me add....my OCD is way up there too. Really bad.
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terv
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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.

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Lymetoo
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Foods DO AFFECT our mental state.

Big Time.

My "healthy diet" did me in and I'm still paying for it 8 years later.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Mountainsky
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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 💚

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Lymetoo
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It's not a "diet" .. it's that certain foods can do us HARM.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Mountainsky
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Well I did eliminate certain foodsto see . I know for a fact it's not an issue with food choices though.
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Lymetoo
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It's not that simple.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Mountainsky
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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.
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terv
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Did you doctor tell you to eliminate gluten?
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Mountainsky
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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.
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Lymetoo
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You are correct about never feeling normal again.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Phoiph
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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.

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Garz
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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.

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Mountainsky
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Thanks Garz.

I just don't see any change/changes anytime soon.

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.

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Garz
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yep - Lyme is always multi-systemic

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?

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Mountainsky
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It's too complex and not that simple.

Thank you again for your prompt replies and informative perspectives and suggestions. I appreciate it.

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Phoiph
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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!

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Mountainsky
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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.

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Phoiph
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Lymetoo,

I think this thread may be better served in "support" rather than "medical"...

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hiker53
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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 [Wink] )

My point is to never give up hope and keep searching and trying new things!

[ 07-06-2021, 05:25 PM: Message edited by: hiker53 ]

--------------------
Hiker53

"God is light. In Him there is no
darkness." 1John 1:5

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Garz
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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! [group hug]
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Lymetoo
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Moving to General Support

thanks Phoiph!

--------------------
--Lymetutu--
Opinions, not medical advice!

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nomoremuscles
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I don't regret it because i was so miserable at the time and I didn't know of any other options.

But looking back, it was a huge mistake that caused unimaginable problems.

Knowing what I know now, I would have *maybe* tried a single course of abx, and if that didn't work I would have sought alternatives.

But back in the '90s there wasn't a whole lot of info out there.

In my case abx were enormously damaging.

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Lymetoo
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Yeah, I wish I hadn't done the abx that I did...at least not so much of it.

--------------------
--Lymetutu--
Opinions, not medical advice!

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Rumigirl
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quote:
Originally posted by Lymetoo:
Yeah, I wish I hadn't done the abx that I did...at least not so much of it.

Well, maybe it would have been better if you hadn't done as many abx, but maybe they were necessary, or better, for you.

Each person may need a different approach, or combination approach.

Plus, for any one of us, what we need can change a lot at different points in time. And it's very difficult to be sure what will be, or was, best for us at any point.

For all of us, and our doctors, we do the best we know how.

I know that some people, like Brussels, and Dr. K, think that what we need should be determined in part by muscle testing.

For many years both as a practitioner, and personally, I used muscle testing a lot. It can help a lot. But I never felt that as a whole I would want to make large decisions about treatment by muscle testing. It can be subjective, or influenced by our thoughts. But this is getting off the subject.

Also, no one in their right mind wants to take a ton of abx. Except if that is what helps the most, which has been the case for me, then I want to do the abx. Of course, all kinds other things have helped me enormously and been essential, like supplements, probiotics, glutathione (IV is like magic for me), etc.

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LisaK
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I definitely feel like I have regrets about my treatments, but I definitely had to start doing something.

I did abx first and I could feel a big change but they ruined my gut since no dr told me and I didn't know about how important it was to protect the gut while using long term abx.

I understand the food choices and how hard that all is, after all I was. a baker and I even made creative decorated cakes that I sold and my baked goods were famous in my husband's office, haha.

After about 10 years of allergist and "healthy" people I would meet at health food stores telling me never to eat gluten /wheat again, I decided to give it a go since I had read that gluten can really cause depression.

It can take 6 month ! for gluten to leave your body. I didn't know that, but I was derpressed my entire childhood and adult life so I decided what the heck and made a pact with myself to give it the 6 month trial.

it was the worst thing ever! remember I was a baker and I loved to cook. When I went GF there was nothing like there is right now.- no cookbooks worth the money, no GF flour on grocery shelves, all the breads were like sawdust! I remember crying more than once.

I did my test and it was proved to me and I tried my best to stay away, but it was still tough. I told myself if I cheated on weekends it would be ok. it was for a while, but then I got rebitten and things went really crazy. I started reacting to everything even more.

I still tried to beat the gluten by only using spelt or just eating the cheese off of pizza, etc.. After some time I realized that each time I ate it I was sick for days or a week or more. So I stopped a few years ago. One of the hardest things I ever did in my life.

I know you don't like to talk about "diet" and I get that too. I was always the fatty in the family and if anyone made a reference to my weight all it did was make me want to eat more. I still get like that at times.

I have to say though the reason why I tell you this long story is becasue I can def. feel that remaining gluten free is a huge card in the poker hand of TBD. - at least for me, but I am really sick and

although my illnesses wax and wane I am right now in one of the worst spots ever with it all. I developed MCAS and actually suspect it's been there my entire life, but now everything is just completely nuts in me.

I really don't feel like trying any more, but what else is there?

I try and find something to try hard to be well for and keep going. Never give up. If we give up those buggers win!

I suggest looking into anything you can. maybe you have mast cell issues- that can really make you feel totally messed up to the point of crazy all over the place reactions and that histamine can make you feel insane and have the worst anxiety you ever felt in your life.

like every second thinking everyone will die at once and the world will blow up and you will be left alone and .... on and on....

The entire friend/family thing I am still working on .. I have a large family and not many fiends that really come around or call any more , but they all seem to think that support means sending you a text once in a while and that's it.

I have lost so many people becasue I couldn't tolerate their lack of being real. I am a very real person.

maybe if people like us check in on each other when we can it will all be ok. that is why I always come back here to Lymenet because people here get it.

Try to just do what you can and accept the new you. do you have all your legs and arms? can you see? still eat without a feeding tube?

I know it can seem just as hard as those things to live with all this, I do, but we must keep fighting or all of that stupid junk wins and keep putting it into perspective.

I found that out last year when I put a big 90% halt to my treatment . It almost killed me. the bart came out and God only knows what else and I now have vascular issue and other things that I am pretty sure are there becasue I did NOT treat.

no treatment for people with the right genetics for all these buggers = death.and its not typically a fast easy one. SO I vote treatment- YES!

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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terv
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LisaK,

A baker! Wow the gluten thing must have been hard. Did you ever get into gluten free baking? That seems to be the rage an popular thing at bakeries around here. Totally agree with the new you. My problem is that people think I am giving up and dont want me to accept me as the new me. maybe they dont want to deal with the new me.

I definitely have gluten (not as bad as LisaK), dairy/coconut(pain), and oxalates. Oxalates are the one thing I really try and stay away from as the neuropathy/insomnia/pain/sweats are huge for me. It is almost like I forgot all my nighttime meds that I am totally dependent on.

I think the idea behind diet is that your body has so much inflammation and other issues from tick stuff that it doesn't need you adding to it. It is the one thing you can try and control.

My big regret with treatment is all those high oxalte foods I consumed. They cause a lot of issues and unfortunately they are stored in the body. Therefore when you go low ox they come out and it isnt fun. Also supplementing with thiamine (TTFD) would have been extremely helpful.

While treatment created other problems, I was totally disabled from tick stuff. I had a lot of issues however cognitive was my "official" disabling one. I got SSDI plus whatever I had through my company. The company one I was able to get without a lawyer (really amazing). SSDI I used a lawyer because people seemed to have so many issues getting approved.

You may know all this or it was mentioned above so ignore the post.

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LisaK
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terv, yes, LOTS of people really just don't understand chronic sickness and what it does to a person's life. I just had one of the worst weeks ever and I was trying to talk to a friend about how hard it was and all my pains and she

was like, "yeah I know what you mean, I had back pain once that was really bad" . um no..

I forgot about Oxalates! yikes, I better relearn- again. Maybe that is why I felt so horrible the past 4 days after putting my diet back on track after a week of binging.

--------------------
Be thankful in all things- even difficult times and sickness and trials - because there is something GOOD to be seen

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Robin123
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Hi - we're all different and need to find what helps. My abx stopped working after 5 years so I tried turmeric powder for anti-inflam and it has worked ever since to keep pain down in joints and muscles.

I get the bulk powder at the health food store and some empty 00-size capsules and dip a capsule in it in the am and pm. I can feel it working pretty quickly in my knees.

So there's a simple suggestion to try, if you haven't already and see how you feel. It's just a cooking spice, but it has a lot of medical benefits.

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