phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
I guess I am somewhat agoraphobic not as bad as I once was but if I have to go out of town for an appointment or whatever the reason I go into a panic mode and treat it then when the time comes I am a basket case.
Not sure if its because I don't feel well cause if I have a good day doesn't seem to bother me but I am living in misery. Have mentioned this to the doc she says oh up your Xanax and change your thoughts .
By the way I am on no treatment now. Tried for years seemed nothing worked for long so a lot of this is probably my fault. Just couldn't afford it and to scared to make the trips.
Posts: 1058 | From VA | Registered: Oct 2010
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Pocono Lyme
Frequent Contributor (1K+ posts)
Member # 5939
posted
I can totally relate. Since Jan 2004, the only places I've gone is to medical appts. and have hated every trip.
I found the Xanax would take the edge off but there's much more to it.
I found that treating adrenal fatigue has helped a lot. The only thing that works for me is prescription hydrocortisone.
I often wonder if I ever get well, will I have the courage to go anywhere alone.
-------------------- 2 Corinthians 12:9-11
9 But he said to me, �My grace is sufficient for you, for my power is made perfect in weakness.� Therefore I will boast all the more gladly about my weaknesses, so that Christ�s power may rest on me. Posts: 1445 | From Poconos, PA | Registered: Jul 2004
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- With a response like that, it seems that you're going to the wrong doctor - and the underlying cause is not being addressed.
It's not agoraphobia if you feel too ill to go out but do so on days when you don't feel ill.
And I would also say this is not garden variety anxiety, either. The doctor you are seeing is not well enough educated to give you proper advice on these kinds of symptoms.
Indeed, our language to ourselves and our thoughts are important but this is not a problem that just "upping the xanax" will solve.
Having positive language does not mean we ignore bad stuff, though, we can acknowledge it. We have to in order to face it head on. Still, we can use more positive terms where ever we can, as long as it's not ignoring the facts.
The fact is that when you don't feel well you don't want to go out. That makes perfect sense and to talk yourself into going out when you are too ill is not at all good for you on any level.
Of course, it's not always so easy to know but when ill, stay home. When in doubt, try to go out and see how it goes. Stay out if it's working, go back home if your body needs that.
I hope you can find a LLMD or LL ND soon. If that is not possible, there are some things you can that can at least help address the underlying infections that have never been treated in the first place.
I know you've never been able to do a full protocol, more than a couple weeks (if I recall correctly) partly due to no LLMD around and partly due to antibiotic tolerance issues.
Not sure if liver support was part of the plan the but, if not, that could make a huge difference in being able to tolerate abx.
There are other ways, though, that could at least help in some regard if you absolutely can't get to an ILADS LL doctor of some kind.
Certain herbs, rife, liver and adrenal support, too. Best guided by a LL ND, yet, if not possible, you can do some things on your own but they need to be very specific.
This can get better if the causes are addressed. Really. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Did your doctor share this information with you? THIS can explain why it's not working so well.
. . . XANAX . . . depletes the body of essential vitamins, minerals, melatonin and glutathione (the body's master antioxidant). . . .
. . . Benzodiazepines deplete approximately 50% of the glutathione from the white blood cells within five hours, and these cells defend our body from infection and foreign material.
This may explain why prolonged use of benzodiazepines can severely compromise our health. Dr. Jimmy Gutman describes Glutathione as ``Food for the Immune System.''
Replenishing the body of critical Glutathione levels not only helps to improve immune function, but also allows the body to detoxify naturally. . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- HAWTHORN is an herb that can also be very helpful, as a support. Very calming yet nourishing for the heart.
Years ago when xanax was not working for me, my ND suggested Hawthorn and my body really did well with it. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Just wanted to let you know that you are not alone in this situation. I become seriously ill when I have to somewhere new or someplace I don't really want to go to. Some say it's all in my head - they can have these serious abdominal cramps, diaherra and hours on the toilet for me!!!!
Sorry you're going through this, but I do understand where you are coming from. I have been given a mild prescription for this that seems to help slow the gut down if I take it before it hits hard.
hang in there.
Posts: 250 | From East Coast | Registered: Jan 2013
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I don't have any answers.
I wonder what is going on too at times...even getting up from laying down and hoping to be able to do something around the house.
It is usually health related with me.
But, thinking about going to the doctor's, etc is unnerving.
I am not able to drive myself so need someone to drive me...it is such a relief after the appointment is over and I have survived the trip.
I only go to the docs about twice a year now.
Getting up to make a lemon drink now...I hope...I have been trying for several days now...i'm dehydrated and know a pitcher of the lemon drink will help.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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kam
Honored Contributor (10K+ posts)
Member # 3410
posted
I think what I have is a bit different than what you have.
I have learned to let it guide me and wait until I am doing better to go to the grocery store, etc.
I also have learned I can do things sometimes first thing in the am...but need to be home by 9 am and flat on my back until after 6 am...sometimes able to do a little something and other times not.
I always find it so strange to be ablel to do something one time and have several times when I just can't complete the task.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
Topic: NATURAL SLEEP & ADRENAL SUPPORT -
Posts: 48021 | From Tree House | Registered: Jul 2007
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Yes, small things seem like so much work. Getting ready to go out gives me too much to think about.
Multitasking now seems impossible. One day, when I was tying my shoes to go to work, I realized I hadn't put any pants on. I was doing too much that morning and forgot to get fully dressed. I'm not kidding.
I can no longer do more than one task at a time when I am getting ready to leave the house, or I forget important steps. (like putting on pants before shoes...)
I now have a laminated checklist I keep in my purse. When I am getting ready to leave I go over the list.
Then when I am out, I am not consumed by the never-ending idea of the house burning down because I left my flat iron on, or wondering if I locked the door, turned the taps off etc.
I find that list really helps keep my stress level down when I am out.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
quote:Originally posted by GretaM: I now have a laminated checklist I keep in my purse. When I am getting ready to leave I go over the list. Then when I am out, I am not consumed by the never-ending idea of the house burning down because I left my flat iron on, or wondering if I locked the door, turned the taps off etc.
I find that list really helps keep my stress level down when I am out.
Wow Greta, we think the same! I have been like this forever (check the stove, check the iron, etc). It has gotten better with lyme treatment though.
I think part of the problem, at least for me, is I try so hard to make sure I have everything I need before I go anywhere. This alone is stressful. I prepare and pack gluten free, sugar free food, all my supplements, etc. Just dealing with all the supplements is a lot of work. It's stressful to prepare, and super stressful to travel. I hate it when I feel the adrenaline hike, and panic mode sets in.
If I space my trip preparation out, it's not as bad. I also tell myself that I'm not going to let this disease control me. So, I just go. The more I go, the better I feel about it. I also take lots of B vitamins and adrenal support to deal with the stress. Sure I forget some things, but in the end I remind myself it's not the end of the world if I forget something. I also try to do some breathing exercises while traveling to calm me down.
I am also paranoid to visit some friends and family because they have animals that go outside. Unfortunately, they are clueless about lyme, and I just don't need another bite. I see lyme in them and they don't listen. Very sad.
I think the best thing to do is play it out. What's the worst that will happen. So maybe I need to take some doxy with me when I travel. I'm also thinking of just taking as little supplements as possible (multivitamin, B vitamin C, D-3, B-12, adrenals and melatonin, herbs & meds).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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GretaM
Frequent Contributor (1K+ posts)
Member # 40917
posted
Catgirl-hear hear! I am the same way! It takes me two hours (an hour each day) to pack a small overnight bag. I have to space it over two days or I start to repeat certain items and forget others.
If I try to rush anything these days I get confused and blank out.
Short term memory loss is the pits!
I hear you on the tick paranoia as well. I used to smell like Dior-now I smell like Deep Woods Bug Spray.
The idea of sitting on grass for a picnic breaks me into a full sweat.
Amazing how such a small critter instills so much fear.
Posts: 4358 | From British Columbia, Canada | Registered: Jun 2013
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posted
Before I was diagnosed all I could do is sit still and stare at the wall--literally--for days on end. I couldn't read, watch TV, listen to music or even comprehend things that my husband read to me. Even when the phone rang, the noise would send my whole abdominal wall into painful spasms. In addition, it felt like my heart was going to jump out of my chest. I had violent arrhythmias that caused dizziness and blackouts, and physiological emotional incontinence. I could only talk to two people. My husband and a good friend. Anyone else...well that was more than I could bear, mentally, emotionally and physically. This despite the fact that we've had many people live with us and I had thousands of acquaintances from doing volunteer work for thirty years and I always enjoyed it. This was a LYME PHENOMENON.
Time has passed. I listened to my body and stayed home for my physical health. It slowly started to improve, even before my diagnosis. I took Diazepam which I now realize was not good for my immune system, but helped me sleep at least two hours a night.
Staying home was good for me physically, but put me back socially so now I have pyschological agoraphobia. I'm trying to push through that gently. I correspond with friends through e-mail and spent a year or so making jewelry as gifts to send to people, when I finally got well enough to do that. They would respond with thank you cards sometimes and when I could I would respond back. It was a start at a non-threatening reconnection to the outside world. I enjoyed making jewelry as well--something I had never done before. (I ordered all of my supplies on line, mostly from ebay because it was so cheap and I didn't have to go out). It helped. It also helped me to start thinking of others to the extent I was able and lessened the amount of time I was thinking about my own problems. It's been 3 1/2 years since late onset Lyme has manifested. Lyme meds and supplements have helped. There are some I can't afford but I'm religious about taking the ones I can afford.
I learned not to push beyond my limits because when I did it got worse and still does. I also learned to keep trying and not give up. It's still a battle but there is improvement and I'm finally able to spend small amounts of time out.
-------------------- I'm not there yet but I'm closer than I was yesterday.---- Lyme Band 31,41,58. Being treated for Lyme and Bartonella. Posts: 149 | From Maine | Registered: Oct 2010
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posted
Know and respect your limits but never give up hoping and trying to improve.
-------------------- I'm not there yet but I'm closer than I was yesterday.---- Lyme Band 31,41,58. Being treated for Lyme and Bartonella. Posts: 149 | From Maine | Registered: Oct 2010
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Ha ha, thanks Greta!
Shiela, Love your posts (above) and your positive spirit!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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