phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Well, after years of trying treatments and nothing seems to last I just feel like giving up.. Seems I have most all symptoms that come and go and then there are a few good days and it is wonderful but they never last..
Now I am afraid to go places especially out of town I just panic for lack of a better word.. Wondering if I can make it, ( I will never go anywhere alone) ..Can't describe the feeling.. Maybe because I feel so bad but even on good days I have this fear.. I am having so many mixed emotions, horrible depression, anxiety , fears .. I want to do but my body just rebels...
So sick and tried of all this , all the meds, doctors and nothing has worked for any length of time..
Just venting, I guess.. tks
Posts: 1058 | From VA | Registered: Oct 2010
| IP: Logged |
glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Look into treating parasites. G.I. parasites can be the missing link and have been for many. Google parasite symptoms. Check out the PARASITE WARRIOR THREAD. Treating parasites was what saved my life. Don't give up!!
I will bring it back up for you.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
| IP: Logged |
phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Thanks to each for your replies and info.. I have been tested for parasites (stool) by gp , when I was seeing a LLMD I think she did some blood testing.. Like all test I am sure some aren't accurate..
How do you treat parasites other than diet? Oh, my GP told me if you were living you had parasites..
Lostlyme , I have tried the thinking part but it isn't working for me..Great to hear you have improved.. Guess I will try harder but oh some days its hard to do anything..
Posts: 1058 | From VA | Registered: Oct 2010
| IP: Logged |
kam
Honored Contributor (10K+ posts)
Member # 3410
posted
Good to see this post. I usually am only able to do something first thing in the morning....
This week there were several mornings when I was not able to do anything which is normal.
But, I wanted to get groceries. So, I thought maybe I would be able to try again in the afternoon.
I was so confused...why can't I just get up and go grocery shopping?? I listened to my body though and did not go.
The following morning I was able to go grocery shopping without the anxiety. Body and brain were working better.
It doesn't make sense to me.
Other times, I will go ahead and try...earlier that week I had headed to the grocery store...I have a service dog so I stop by the dog park to allow her to toilet before going into the store if needed.
That did me in. I had to head home after a short stop at the dog park.
I find it is good to listen to the body and brain....it keeps me from harms way.
Yes. I also get discouraged because of health and lack of being able to do much at all.
It helped to read your post. So many times things don't make sense they just are.
Posts: 15927 | From Became too sick to work or do household chores in 2001. | Registered: Dec 2002
| IP: Logged |
phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Tks Kam.. sorry you have this but misery loves company so they say..
I was always on the go, loved to travel so I know its this darn disease.. Like you say listen to your body and brain..
I am the same way about groceries etc.. Some days I can and feel somewhat normal and there are days, weeks I can't leave the house..
The thought of having to go out of town for a doctors appt. just puts me over the edge..
Still feeling really down been a bad week ..That is the reason my family and friends thinks its all mental cause maybe I can do one day and can't the next.. Making any plans puts me in a tizzy..
You are so right .. So many things don't make sense..
Posts: 1058 | From VA | Registered: Oct 2010
| IP: Logged |
posted
phyl.. have you tried trazodone or amitriptyline?
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
| IP: Logged |
phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Lymetoo, I have tried both..I took the trazodone hoping for sleep , well at 1 am I was still awake but had energy.. The next night I took it and at 5 am I was cleaning my house,loved the energy and probably would still be on it but started getting so dizzy I couldn't function .. As my doc said it had the opposite effect.
Took amitriptyline (elivil) had a horrible side effect.
At the time I was prescribed AD's I had more anxiety than the crying, never cried for no reason.
Have tried Paxil, Zoloft, Celexa, Cymbalta and one or two others.. Like I say at the time I was trying these I wasn't anything like I am now..
The only Rx drug I take is Xanax except for the antibiotic that I am off of for now..
The ENT says its sinus causing inflammation close to the brain causing these spells.. I have been told so much by so many docs and none of the med seem to work..
Tks for your help
Posts: 1058 | From VA | Registered: Oct 2010
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- I know you could never find a LLMD or do any "official" treatment for lyme.
Have you been able to settle on any other treatment options, such as a particular herbal approach or look into a RIFE machine?
Lithium OROTATE might help calm some of the reactions you get.
As for what you are telling yourself about being "afraid" to go places, this is not some judgement or criticism that helps those who can't go places because there bodies are - wisely - telling them it's not in their best interest.
I'm sorry that it's hard to go out. I know all about that. I just hate to see you beat yourself up, thinking it's fear when it's wisdom.
Until you feel better, until some of the sensory overload issues are better, it's just wisdom to be very careful with where you go and all the circumstances involved with your safety.
Frankly, IMO, grocery shopping should be off limits for anyone dealing with lyme. Same with all big box stores. These create terrible circumstances for those with sensory & adrenal issues as you have described in the past.
If going into such a store makes one feel ill, it's not a good thing. The body is telling us that and we need to listen. Support local farmers at Farmers' Markets . . . . there are other ways.
Ultimately, until the most destructive underlying reason (lyme & co.) is addresssed, some things can help but that help may not be as solid as required.
Of all the alternative approaches you may have considered, is there one that might work for you?
Zhang, Buhner, Rife?
If there is anyway to tolerate smelling like garlic, I recommend Zhang's approach. It can be a bit spendy but is fair. When I did that for a few months (a couple different times) I did the best ever. I just coundn't continue due to cost. Still, it is a reasonable, all that is considered.
What else needs to happen so that you can treat lyme? Do you need some links for the choices since you don"t have access to a LLMD? -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
Topic: Lithium Orotate -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- When I wonder just why my body seems from another planet and others can do all kinds of things I can't even imagine, I must remember that have also not really addressed all I need to do.
And, for a list you might consider that has been posted in prior threads when you talk about being able to tolerate going out . . . in kindness to yourself, read over this again.
Much is explained here about when the inner ear is affected (as it is by lyme), all bets are off and everything changes. Keep that in mind.
VESTIBULAR SYMPTOMS [note that nearly every one can go along with lyme or other tick-borne infections]
After reading this list, it's clear that when someone has such issues, tolerating sensory signals is going to be different.
Adrenal support, rest sessions, avoidance of some venues is vital. Absolutely vital. We can't keep trying to jam our square pegs into round holes. Not now. Not yet. With support and treatment, our bodies will be more flexible.
Still, NOW, do gravitate toward healing environments and activities. Do nurture passion however you can for art, nature, color, music, conversation - just how that all blends with your body. Somehow, even in small increments.
When DOING any of that is not possible, it can help to even just APPRECIATE beauty and craft. OBSERVING . . . noticing . . . being. Holding light and love within no matter what.
That might just be having art books delivered from the library each week. Or travel DVDs, PBS, music. Doing a little music.
Invite student musicians (or speech students, comics) over for mini house-concerts to hone their skills. Something like that might be possible, through your area schools or scout troups.
If you can't go into the village, bring the village - or a certain number of the villagers at a time - to you, where you can control the environment.
Better yet, see if a friend or neighbor would do this. Then you can just skip across the lawn. Reserve the recliner for yourself in advance !
For more organized music events - for a variety of styles - Google "house concerts" as these are fabulous events, very intimate venues and usually a good price for professional musicians who are in town for larger gigs the next night but have some friends there who have organized this add-on for them.
Again, see if you can reserve a recliner. Usually, the concert is set apart a bit from a snack table and people get up and down between songs if you need to do that. I've been known to camp out under quite a few tables ! -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Looking at ways to get out of ourselves, and to bring in some energy, we ALL might want to start a art discussion or appreciation group. Many ways to do that and you need no training at all. Just interest. Bring them to you - or to a neighbor's house.
You could do this from any number of angles. Maybe go by nations and cultures, including any Embassy staff if you are in a city with any foreign embassies -- or foreign exhange students, etc.
I'd start with the library staff, museums, art instructors from the schools (who may be compensated by a group of your friends chipping in) . . .
By ERIC R. KANDEL - New York Times - April 12, 2013 -
Posts: 48021 | From Tree House | Registered: Jul 2007
| IP: Logged |
randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
i don't go anywhere really anymore. it's just because i'm so embarassed about my weight. that and i just am so tired.
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
payne
Frequent Contributor (1K+ posts)
Member # 26248
posted
phly6648, same here, super anxiety, all most histerical.. at times, just walking in to the store, and then the waiting line made me explode with anxieties.. I found to really focus on your timing, never race in, park your car and roll down the window and sit for a spell, slowly walk in the store and stop and look at all the people doing life like we use to , really force yourself to pace a slow walk and keep retreating a few isle and restart... look at things you are not interested in.. give yourself lots of time to enjoy shopping or where every you are.. we are all just people doing people things feel like you belong and fit in normally, that you do not feel like a flashing blue light.. I truly hope you find time to work with this and calm yourself with I am ok and i am a human being, and belong to society.. self control. blessings
-------------------- TULAREMIA/rabbit fever ? Posts: 1931 | From mid-michigan | Registered: Jun 2010
| IP: Logged |
phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Thanks everyone, I appreciate all your input.
Keebler, I did see a LLMD twice and a few phone consults but just couldn't travel or afford to continue..
Yes, I have tried different treatments, mainly self by reading and I have a PA that is understanding so we work together she admits she is clueless..
I did the vit c/ salt till the vit c starting upsetting my esoph/ stomach.. did garlic till same thing happened etc. Now trying to help the gut with diet , probiotics ..
The PA will give me abx using a different dx but for now can' handle them.
I have found diet, most of all REST are my friends.
Feeling better today but have been in bed most of the week. thought I would die yesterday.. So strange how all these symptoms can make you think you are dying one day and may live the next...
Going to try to listen to my body... The PA told me I wasn't able to tackle the trip and she was right..
No crying this morning.. YEAH
Posts: 1058 | From VA | Registered: Oct 2010
| IP: Logged |
annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
For myself , a small dose of a non addictive antidepressant is a small price to pay for having more normal emotions. Zoloft or prozac or trazadone are generic, and there is no reason to become a disabled hermit.
I had issues with anxiety and depression bec they are genetic in my family , and that is common. They started long before lyme came into my world , and affect many people without lyme.
You can also research amino acids like taurine and 5HTP and GABA and a book called "The Mood Cure " or "The Way Up From Down" at amazon.
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
![[group hug]](graemlins/grouphug.gif)
Printer-friendly view of this topic