This is topic Angoraphobic and no LLMD in forum Medical Questions at LymeNet Flash.


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Posted by Geet3721 (Member # 15751) on :
 
Hello all,

Its been awhile since I've posted. My question is... what do you do when your LLMD stopped treating you because anxiety has gotten so bad that you can't get to work let alone do the 2 1/2 hr drive to get to his office.

I have been stuck in my house for over a year now, while I am doing therapy to try and overcome my anxiety, I have been without any lyme treatment and without any medical at all really. My LLMD has refused to treat me until I can get into his office but I honestly don't see this happening anytime soon.

Any Advice on what to do? anyone have to deal with this?

What send me over the edge with Anxiety was when I took LDN and went to work in one of the tallest buildings in the world was in the elevator and had a very bad heart skipping beat experience. My anxiety was already high but that pushed me to a new level and I've slowly gotten worse and worse until now I am housebound.

Thanks all!
 
Posted by Rivendell (Member # 19922) on :
 
Geet, if you can't get to a LLMD and you want a doctor's help, you could try Dr. Zhang (the last website listed below).

He does phone consultations, and I have heard he is not that expensive.

He is recommended by Dr. Andrew Weil (famous doctor) for treating chronic lyme.

He uses chinese herbs.

Or, if you want to treat yourself, you could try the other protocols below.

(Japanese Knotweed, fishoil, and ashwagandha are very good for anxiety.)

Also, on the Buhner website below, if you click on "ask a question", buhner recommends someone you can consult with using his protocol, if you wish help.
 
Posted by Keebler (Member # 12673) on :
 
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This does not sound like agoraphobia. Just because it's very difficult to go out, or even impossible and you don't, that does not mean this is agoraphobia. Agoraphobia is a phobia. What you are experiencing can be fully explained, even if very complex, and due to physical illness.

It really makes perfect sense that you avoid situations that your body tells you are just too much to handle right now.

A similar situation, from another thread, and some of the explanations - and suggestions for what can help:


http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=031346;p=0

Topic: Agoraphobia / Anxiety from Lyme?

Adrenal, nervous system, vestibular (inner workings of the the ear / balance), and cardiac involvement discussed.
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Posted by Marz (Member # 3446) on :
 
ILADS has a good brochure on lyme and psychiatric illness.

http://www.ilads.org/lyme_disease/Psychiatric_Brochure_08_08.pdf

I printed it out and brought it to a counselor a long time ago and he was able to help me with more understanding.
 
Posted by Keebler (Member # 12673) on :
 
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Would some modifications work? Such as:

have someone else drive you (plot the easiest route with less stimulation - and even map out parks to stop along the way to "rest")

See if you can be have an appointment at the least busy times. If office space is shared with other professionals, perhaps on their day off, etc. Right after lunch, etc.

be put into a room to lie down immediately upon your arrival. Plan to arrive and rest for at least 20 minutes before you have to talk to doctor. Then do rest. It's vital.

You may also need time after the appointment. Be sure the staff is clear so that a room will be available to you. And lying down is a must (for me), sitting or even reclining back is not good enough. Use the floor is you have to (take a large scarf and small towel for a pillow).

A "quiet room" should not be next to any noisy equipment (autoclave, elevator shaft, doors that slam, etc.).

As you noted vestibular reactions to the elevator, you may also have other sensory considerations. (Hope there is no elevator in the doctor's office but if there is, there are some tips I can give you if unavoidable).

If sound sensitive, remove any ticking clocks, etc. or pad the back with paper or textile to soften it.

If sensitive to lights, a visor or eye cover for when you rest. Turn off any fluorescent lights possible. You may need to take a small accent lamp with a regular light bulb (and shade).

Natural light from outer windows best - IF mini-blinds are not involved. Any kinds of blinds can be a vestibular challenge so best if they are just opened all the way or closed all the way, creating no "stripes"

Be certain of the sound-scape you are likely to encounter (take protective measures)

Ask the staff the day before to avoid any scents (but, really, any LL doctor's office should be as scent free as possible).

These are just some accommodations for anyone who has vestibular &/or sensory overload issues. You may not need them all - or may need others.

Figure out how this could work and then put a plan into action. Having someone with whom you are comfortable to drive -- not "take you" but "go with" you and they will just happen to do all the driving. That "take you" thing can set up a bad dynamic so be careful about that.

When you are in the appointment, they could go do whatever they would like -- or if you need them to help you with a snack or your water refills, to air out a bathroom, etc.,

try to take the team approach (again to balance the interpersonal dynamics), like this is an event for both of you, together to pull this off. Have some fun and laughs but not at your expense, of course. There will be some "Oy, Vey" moments that you can laugh at later.
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Posted by Keebler (Member # 12673) on :
 
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In the meantime, the links that Rivendell posted are excellent to get you started.
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Posted by Geet3721 (Member # 15751) on :
 
Sorry for the delay in responding to you guys. Those are aome great links and ideas Rivendell! Thank you so much!

Keebler- I think the same thing from time to time I wonder how much is anxiety and how much is Lyme and coinage croon reeking havoc on my body and mind among other things like thyroid, adrenals, etc. I know whenever I treated babs like with artemisia or anything really except me prob I was bad with anxiety really bad.

I appreciate the suggestions of what to do when going to the doctors office I think they are all really good ideas and I will try them I just don't think I can get there yet. My anxiety is so crippling I am not able to function right now much beyond my front yard an even then I'm challenged, even in my house it's rough at times.

I have been talking to a therapist of sorts that is giving me tools and things I can do to get my life back, relaxation, breathing, practice etc. but even with that I feel a bit lost because she constantly is saying there is nothing wrong with you physically it's just anxiety it can't hurt you, but after being sick for so long I'm not convinced.

Thank you Marz for brochure as well!
 
Posted by Geet3721 (Member # 15751) on :
 
Another side note I haven't gotten my period since July of last year so I'm sure hormones are at play to some degree . I thought maybe my thyroid was to blame but my blood work looks good according to my primary doc. I take a large dose of armour 2 gr or 120 mgs

Sorry didn't mean to over share or freak anyone out with woman talk.
 
Posted by GretaM (Member # 40917) on :
 
Geet-hahaa! No freaking out here [Smile]

If it isn't our periods, it's coffee enemas or body odor.

We're a mixed bunch here on lymenet! Anything is open for discussion on the road of healing [Smile]

Anyways I was wondering how you were doing. Thanks for the update [Smile]

I wanted to share something that just happened to me.

For my entire life I am terrified when I fly. I take ativans, gravol before the flight, during the flight. Even still I cry, tell my fellow passengers that "we're all going to die" etc. When the engines change noise I become hysterical.

Anyways, most flights now they put me near a flight attendant and I need a friend there to keep me from screaming.

But... I needed a gp. A doc to support my lyme doc, who is an nd.

I found one... 1200 miles away.

I didn't have any ativan. Ran out.

Got on the plane. I had only two options: (worst case scenario):

1) spend the next 10 years declining from lyme

Or

2) have a 30 second instant death


I picked 30 seconds.

And it was the best flight I've ever had. I felt like I finally had control of my life.

Lyme makes me feel like I have no control over my future.

So I don't know if that helps you. I hope you get the point of my long winded story.

I lived with my fear of flying. The alternative, losing the lyme battle, was the worst of the two evils. Something "clicked" and I got it.

Don't beat yourself up about your phobia. We all have them. Anyone who says they don't is either lying, or very medicated. Haha.
 
Posted by Geet3721 (Member # 15751) on :
 
Haha Greta that's a good story, I think about that sometimes , like what do I have to lose and that I should just go for it! Sometimes it works out and sometimes it doesn't lol

I give you props that couldn't of been easy! The thought of getting on a plane is making me queasy !

Thanks for sharing your story and your advice, I'm so sick of being sick physically and mentally. As everyone else on here is too. This site offers such great suppiort and without it I might of never known half of what I do now and I certainly never would've found a llmd so I am very thankful to this site and all the wonderful people posting on. It!
 


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