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Author Topic: Heading to see LLMD for the first time in>>>
kam
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I think it has been 8 years. I am a lot lower functioning now than when I made the trip last time.

It is a new LLMD but one I tried to see when I first came down sick.

I had been approved for an apartment close to her office years ago. Then she had to file bankruptsy and close her business as she was spending more hours on her patients than she was getting paid for by insurance companies.

Having trouble staying focused this am and vision is being weird so hope this makes sense.

Leaving Thursday at dawn if health allows.

Appt is on Friday am.

3 hour appt.

For now, I have been having trouble just packing an overnight bag and some food.

So far I have a night gown packed and toothbrush and toothpaste. Resting, then I will get up and see what else I can do.

I also put 3 days worth of food in a zip lock for Rosie.

Friendn is driving me. She is renting a van. HOping to be able to take my power chair with me and find a place to lay down on my back and stretch out in the van.

I can not sit upright for long ..or I should say...recline with my feet up.

I also get car sickness ...got that before lyme and company...got it worse after lyme hit.

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MannaMe
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Try ginger for car sickness.
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Lymetoo
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And take a pan, just in case!

Hope all goes well!!

Blessings upon your very kind friend!

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

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momindeep
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Godspeed Kam...our prayers will accompany you!
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steve1906
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Good luck, hope it's a great visit!!!

Steve

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Everything I say is just my opinion!

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Laura Jean
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Best of luck with your appointment and the trip.

I hope a new protocol will help you get well soon!

Saying a prayer for you,

LJ

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lpkayak
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Will be thinking about you. Hope it goes well

--------------------
Lyme? Its complicated. Educate yourself.

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Star Wars Fan
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Praying! Hoping she can help you find a protocol that helps!
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Robin123
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Will be rooting for you! Our thanks to your friend. Take it easy, as we know it's not easy for you to travel.
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Lymetoo
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Keep us posted this week!! Good luck and Godspeed!

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

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kam
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Friend is getting van ready. Putting down seats for me to lie down I guess and finding a place to put the power chair.

Almost light out

I had trouble just filling 3 bottles this am with the lemond cucumber drink I drink.

Getting ready for this trip has shown me just how low functioning I am.

Not able to call primary care doctor's office to make sure they sent my records.

Not able to call Dr. H's office...old LLMD back in 2003 to 2005 to see if he sent my records to Dr. Y

Had the inflamed brain yesterday so not able to do much but feel sick.

So, typing with eyes cosed. I think we are or have enugh to make the trip...food,

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lpkayak
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Positive energy to kam...be safe...the record thing will be ok

--------------------
Lyme? Its complicated. Educate yourself.

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Lymetoo
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God bless!!!!! You go, kam!

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

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hopingandpraying
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Praying for you that this be the beginning of your healing and that Almighty God blesses your wonderful, caring friend abundantly for helping you.
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Robin123
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We want a reportback!
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Lymetoo
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She posted on FB today that they were in Yuma, AZ.

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

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kam
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NO table to read what you all posted. I am back home. It is going to take me ahilwe before I get back to bseline.

Dd not make it to the doctor's appt on time. CAlled to let doc know I was running late...actually my friend called.

Not sure what was said but noticed friend on phone during a stop in a field in the desert to try and recover a bit. Traeling in the smoked filled van she had rented was too much for my health.

But, when friend got back from phone call she said the doctor sid she coudl nto see me because it would be too late by the time I got here.

I was pretty out of it most of the trip..

My friend left as soon as she dropped me off at home.

So not sur eif wwe are still friends.

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kam
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Lerned I travel better in the evening whe it i sdark and there is less movmenet on the freeway. But, the traffic noise and road noise was still too much.

My health just shut down.

Learned the dodge caravan has too low of a ceiling to load my power chair into it.

Not sure what heppened with the food that was in the ice chest. Do believe I had food poisoning 75 miles into the trip

WAs vomitting and system was doing that hot and cold thing and had the runs.

FRiend wanted to take her ice chest so I put food to go into ice chest on counter in kitchen..I think it wasn't put into the ice chest until 2 horus later as I think tha is how long it took for use to load uting sup.

Then, there was hardly any ice in the ice chest...again looking at all of this thru being in a big brain fog and over doing it from trying to get on the road.

Just kno after I ate teh yogurt and swallowed my pills with the kefir system kept throwing up.

I as bad enough I could not move for a while even a short way.

WE were parkedin a parking lot int he sun. Finaly moved across the road to a hotel and stayed there.

It was not a good trip at all. MOney could have been spent better but nto sure how at this point.

OK I am tping this with eyes closed and can't recall what I just typed so will stop now.

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kam
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Can't get logged into my AOL acct ...something with security throughout the ocmputer with explorere.

Can't get on to FB via computer again I thin kit is due to explorer ..aol said something about it.


need health to be ding better to figure things out.

bottom line is back to the drawing board to figure out how to get a a LLMD and get treatment.

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kam
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Need a luxuary car with less road noise and treaffic noise ...felt like I was oign over railroad tracks with the van.

Things are magnified with the conidtion my health is in.

Need to be able to lay down in the back seat.

My friend asked me what were my priorities in a car. I had told her comfort, quiet, little raod noise. to be able to lay down in back seat came before taking the power chair.

She rented a van anyway.

Learned traveling in the evening would be best. Even with eyes closed the lights and sounds, etc were too much

Also learned it is just 6 or 7 hours to the doc in Santee. I think. Need to double check.

but, for a person who has troubling traveling the 3 miles to take Rosie to the forest or the 10 miles to the campground to camp....not sure if I can do that trip again even if I had a luxary car to travel in.

What they call a luxary car with the rental company.

Tehr also is the factor of coming up with the funds for all of it.


Doc I was goint to see takes mediare.

It would have been a 2 our appt for my frist visit.

Other option is to come up with the funds to see the new ILADS doc in the state I live in.

I have yet to hear how much she hcarges. I just now it is a lot plus it appears treatemtn is alos out of pciekt.

There also is a doc in the state that does cowden. I was pproved for the $100 a month Cowden plan but got too sick taking it to folow thru...need more caregier help while I am on it.

Not susre how much it would cost to see him or her

Also need someoen to drive me to the office.

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kam
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I don't think my friend an I are friends anymore.

I know there has been stress between us for a while...this trip was high stress...

She moentioned how much the tirp cost her. She would not discuss it ahead of time so I could figure out if it was the way to go vs maybe using the funds for a local doctor.

Something is going on with her health too...not sure what.

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kam
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STill not sure how to take this trip and be successful at it.

For some strange reason I still want to go to this doctor's office..maybe because they take medicare.

Not sure if it will help...I woudl assume they would be able to find soemthing that medicare will help pay for for treatment.

And at least be able to get me more caregiver hours while on treatment.

Need someone who understands lyme disease.

Typing this with body in a lot of pain, and brain inflamed and in a big fog.

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momindeep
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There are no words...sorry doesn't seem to cut it somehow.

Kam, please don't give up...we all care so very much for you.

Asking the Lord to comfort you.

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kam
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Friend said it was 75 or 95 miles into the trip when I got to sick to travel.

I just know we were in tempe, AZ because I checked the weather on my iphone that my friend provided for me.

Friend wanted us to leave around 3 am from the hotel to go tot he doctors' and din't understand I was still too sick to travel.

Woke up about 3:30 am willing ot give it a try. Friend was then mad at me for wanting to leave at that hour and brought it up again later saying she would nto do that again and forgot she had suggested it earlier that evening.

Got a little ways down the road...too nout of it to know how far. The movement in the car was too much so asked friend tos top car so I coudl lay in the back of the van where it was quiet.

REcalled doing that thing my health does when it is over the top..in and out of consiousness.

CAme back too and said it would be best if we just headed home.

Friend said it was only 100 miles to Santee. So, I thought I could do that. It was still dark out at athat time.

But later saw a sign that said 300 miles to a place that was before we would get to Santee or 200 miels can't recall now...I think it was 300 miles.

Learning to not trust friend.

I had not checked mileage before the trip to see how long things would take to get there. FRiend had said just to let her handle things.

I had still planned on cehcking it but health did not get well enough for me to do so.

Fianlly able to check mielage or try while oheading back home.

I think it said 6 hours from yjma to home.

Tping this is just making me more confused so I need to stop.

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kam
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But, typing this is alos helping me to srot throught things via the keyboard as not able to sort thru things in my head.

I recall asking friend to leave Wedneday as I was not sure how my heatlh would handle trip so it would allow time to make usre we got ho appointment on time if health went south.

My original plan of havng someone drive me and camping along the way would not have been a good one as needed temperatur control environment.

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kam
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It was 90 degrees most of thet trip. Heat also is something that makes my heatlh worse.

This was in October. So need to keep that in mind if I try this trip again.

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kam
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OK I checked mapquest. It is 8 hours to Santee, CA

Trying to figure out how to get to LLMD and which LLMD to go to.

The one is Santee is the only one I know who takes medicare so thinking that is what i need to do.

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kam
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After I recover from this trip, I will figure out how to go.

1. I need a quiet, comfortable ride.

2. Someone to drive me

3. Maybe leave in the evening and stop at a hotel half way or camp site...if I can make it 4 hours

That would mean I would need to get up early the next morning and be on the road another 4 hours...not so sure that is do able..I learned from this trip that traveling at night is best.

Need to factor in having a vehicle that cuts down on road noise and traffic noise..a smooth and quiet ride.

One I could lay down in the back seat. ..better on the health.

Also need funds for trip but will figure that out later...on how much is needed and then see if I can raise the funds.

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kam
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There is a new doctor in the state that is approved my ILADS> I need to contact them or have someone call them to see how much it would be to see them.

I don't think it is do able as I do think it would be a lot of out of pocket money for the appt and treatment but I do know one person whose health has improved since going to this doctor.

And another one is starting to see her.

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kam
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I must admit the thought of giving up came to mind.

Instead I will wait until I am bck to baseline and then try to see what can be done.

Other option I have is to see local doctor that was recommeneded to me for a primary. Not sure if she is llyme firenldy. But, maybe she can help with soemthing. She takes medcial.

But, I know I will also need to come up with payments to pay her for my part or hope she will allow payments.

It could be about $300 for my part.

Other primary doc and neuro also wanted to do the mri of sppine and brain with and without contrast but didnt' get it down...

first time due to health not being able to complete it..I had to go home before they got to me.

2nd was due to money..I figured my part of the bill would be about $1,000 and not sure really how they willl help...neuro was not lyme literate and told me one side of my body had to be paralyxed in order for it to be lyme disease.

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kam
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So, need to get secondary insurance too and maybe do these thing next year.

When I checked last time, iw as not able to afford secondary insruance..it was either buy food or pay for secondary insruance

I think it was around $300 a month for it.

Taht is what i have for food a month.

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kam
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Good things. When I got so sick I could move...I recovered enough my friend could pull the car across th ee street to some shade.

I had been laing in the back of the van with the side door open and the vomit on the ground and on me along with heat and flies...yuck.

I was too sick to get something to wipe my mouth, etc..so had used the pillow case..guh...friend finally poured water on my leg but still alot of vomit left on it and my clothes.

She then rented a room at the hotel we were at.

The handicap room was the only one availabe. Pretty cool.

Except I wasn't doing well enough to take a bath.

I have not taken a bath since 2005.

ONly showers here.

I also had not consdired that I could take a bath as I would not be able to get in and out of it..but with the handicap bars in the bath I could have if health was doing well enough.

I hadn't considered handicap bars...cool.

But, the room was not quiet..high pitch sound for the air conditioning unit.

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lpkayak
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i dont know what to say either

my friend with no money is having good luck with buhner tea starting very low dose

a couple hundred dollars a year

but i dont know if you can keep track of measuring etc...

i love you kam. i am so sorry you are going thru this

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Lyme? Its complicated. Educate yourself.

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Robin123
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Wow - so sorry to read all this -

Don't give up -

"When the going gets tough, the tough get going" was what was said to me repeatedly throughout my struggles -

You can go forward and make your next plans - you may not know right now what they are, but perhaps you have learned a few things from this first attempt to avoid doing the next time -

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hiker53
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Kam.

Sending prayers your way.

Hiker53

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Hiker53

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

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kam
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thanks guys.
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Lymetoo
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Hugs and prayers, kam. So very sorry that things did not go well. (the understatement of the year)

[group hug]

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--Lymetutu--
Opinions, not medical advice!

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GretaM
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Argh sorry Kam!

That was nice of your friend to rent the van and drive and also pay for the hotel.

Sorry it didn't work out with your trip.

Lyme is unpredictable. Ruins plans constantly.

Wish I could help.

Praying for you to return to baseline.

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kam
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Thanks guys. you don't know what it means for me. [Smile]
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Judie
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I'm so sorry the trip was a bust.

This was posted awhile back, maybe it will help.

Help Traveling to Appointments:

https://sites.google.com/site/marylandlyme/help-for-you/traveling-to-appointments

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Dogsandcats
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I am so sorry. I know you have been waiting for this

appointment for a long time. I remember traveling was super

hard for me- I can't imagine how hard it was for you all that

time in the car, only to not be seen.

My heart goes out to you.

--------------------
God will prepare everything for our perfect happiness in heaven, and if it takes my dog being there, I believe he'll be there.

Billy Graham

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Robin123
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How close to you is this new ILADS doctor in AZ? Perhaps you could find out more about how they are as a doctor - if they know enough to evaluate and treat you properly.
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kam
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I was just told that it is extremely expensive to see her.

I did learn I could do a telephone consult for free.

But, hoping they will let me do an emai consult as it is rare I am able to have a conversation and when I do I usually do not understand what is being said or recall what I said.

I think that would be the starting point. I may have all ready contacted this doctor in the past.

It seems I remember being told I was out of luck or something to that effect.

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kam
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I think it was the email 15 min consult that they would not do.

I think I needed to be able to consult with them on the phone.

Worth a try when able.

I did send them a message via their web site asking for an email consult.

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kam
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Sent the message today.
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kam
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I think if I go to the primary doctor in town she will not be able to help until she does the testing she will want to do....

..the ones I had done over and over when I was looking for answers when health first went south in 2001 to 2003.

...it just cost me money and made my health worse.

I don't know if she will be open to lyme disease or be lyme friendly.

So sitting on the fence as to whether to see her or not.

The goal is to get more caregiver help . I know i need a LLMD to help with the MSIDS

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Robin123
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If the PC is not Lyme-literate, my guess would be that it won't help much.

Perhaps someone could be on the phone with you to the other doctor, acting as your go-between in the conversation. Are you able to hear a friend talk to you about what the doctor is saying and let your friend know how to respond? People do this all the time with language translation.

Am still curious to hear how far away this new doctor is from you -

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kam
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Robin..it is a brain processing thing..it is double trouble to have someone on the phone talking for me and then asking me the questions and then me trying to respond.

which new doctor? The LLMD?

I need to double check...but I think 8 hours. She is not new she has been in the field a long time.

I tried to go see her when i first came down sick. I had made plans for housing near by.

Then she had to close her office due to spending more time with lyme patients than she was getting paid so I did not make the move.

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kam
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When I first came down sick I called three LLMD's in CA. 2 had over 1,000 people on the waiting list including the doctor I tried to see on Friday.

the 3rd was just opening an office. Now, CA has done a good job of recruiting docs.

Not sure how many take medicare though or what treatment we can get with medicare.

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kam
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just checked mapquest...it is 8 hours.
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lpkayak
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the primarys around here insist you need pos elisa to tx

and then they do wb and if it doesnt come back pos they say you are cured...oh and since mass gen has taken over our local hospital they inssist ONE 100m doxy is the tx

they have no idea when you start to say clinical dx

--------------------
Lyme? Its complicated. Educate yourself.

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Lymetoo
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kam.. ANY doctor get work toward getting you more caregiver time.

Work on that first (?)

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

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kam
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I could see the primary doctor that was ssuggested to me by the chiro.

But, guessing she would want me to do the testing too MRI etc...she would need documentation showing I need more caregiver hours.

I think I need a LLMD that better understands this disease in order to get more caregiver hours so I can start taking the Cowden protocol.

I keep my eyes open for a doctor that might understand lyme more and be able to help me.

I hear there is one in my state but he is costly and not a MD a natural path so that might not help either with the rules for mor ecaregiver hours

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Lymetoo
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But you need more caregiver help NOW.. that is my reasoning.

You can't wait 6 months to a year to see an LLMD to get more care.

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

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Robin123
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Can you get a SPECT scan done, which would probably show hypoperfusion? You would have to check to see if it's covered by your insurance.

How far away is the naturopath?

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lpkayak
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Kam. A lot of us have learnrd to udentufy our weaknesses not where they cime from

That is how ppl get on disability too

If you are on disability start with what they used to give you th a t

If not your primary can dx things like

Ambulation problems
Insomnia
Hyper sensituve hearing(that might be harder ti use)
Concentration priblems
Inability to sit for more than ___ minutes
Pain
Omg! Severe head ache...call it headache or head pain-that is what they understand

Medical ppl dont have a clue. They are robots. You need to use words accepted by their palm pilot or there is nothing wrong with you

List continues

Unable to prepare regular meals-accept meals on wheels to show you are coopertive...they wint understaxnd gmo or processed food as a problem...eat what you can...give some to rosie and cat and toss the rest

Unable to cean toilet or shower

Need help showering sometimes

MAYBE OTHERS WILL ADD TO THE LIST PRIMARYS UNDERSTAND

--------------------
Lyme? Its complicated. Educate yourself.

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kam
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Robin....my primary care doctor did write a prescription for a spect scan....it was the first she had heard of it when I asked her if I got one maybe it would help my case for getting more caregiver hours as it shows how the brain needs help.

Mayo clinic does spect scans but it would be out of pocket....i don't know how much it would cost.

if someone wants to call mayo clinic and ask them how much it is that would help.

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kam
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mayo is az...they are not lyme literate [Frown]
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kam
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maybe i should give the local doctor a try that was recommended by the chiro.

i did fill out the paper work and mail it in.

next step would be to have the caregiver call to make an appt...but need to wait until i recover from the trip to see llmd

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kam
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I think the next step is to make an appt with the local doctor that was recommended by the chiropractor when health is doing well enough.

Getting down the hill to the lyme friendly doctor is just not do able and so far she has not doable.

I do need a LLMD in order for her to help me.

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kam
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So far, I have not been impressed with this local doctor's office.

But, hoping the glitch is due to the resceptionist and that the doctor is good.

The receptionist looks like a person I once had as a caregiver who did not work out and I had to ask for someone else but don't trust my brain to really know if that is the case.

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just don
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After reading all your trials and tribulations


all I can think of is the OLD "WIDE WORLD OF SPORTS" opening saying

The thrill of victory,,,the agony of defeat.

Altho this defeat is just temporary I know.!!!

--------------------
just don

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kam
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JD...good to hear from you. Going to check out your thread to see if you have updated us on what you have been up to ...we missed you
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steve1906
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I've read in the past it cost between $1,000 & $4,000 depending where you go.

I'll see if I can find what Mayo clinic charges.

Steve

--------------------
Everything I say is just my opinion!

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kam
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Thanks Steve. I do need to decide what the next step is..i don't want to go another 8 years without having a lyme literate md to help me
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Lymetoo
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quote:
Originally posted by kam:
mayo is az...they are not lyme literate [Frown]

-
Does not matter... you need to get a SPECT or MRI. You don't even have to mention the word "Lyme."

You need help and it does not have to be from an LLMD.

(and it doesn't have to be Mayo .. at all)

So try on your "gofundme" site??

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

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kam
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mayo was the closest place to get a spect scan when i looked into it. i know it doesnt' matter that they are not lyme literate.

what stopped me was that they ddi not take medicare and i owuld need to pay out o fpocket

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kam
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my go fund me site is no longer active. and i need to wait until my brain is working welle nought o see about making it active or setting up a different acct with another iste ..yhou caring i think

they do not take as much percentage if any to raise funds

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kam
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OK. This mornings thoughts are:

1. To make an appt with the primary doctor in town that was recommended to me via the chiro.

Hoping she will allow me to make payments on my part of the bill that medicare doesn't pay.

Hope she is able to help

2. Get together with K and pick out a secondary insruance plan and see how much it will cost.

If affordable, I could get some testing done ..MRI, etc

3. A person on the local FB state support group for lyme is going to see who much it would cost me to see the new local LLMD in the state for a first time visit.

I know this person does a free 15 min phone consult. Not sure when health will be doing well enough to do that.

I also have sent an email to the web site created by this doc but haven't heard back yet.

This LLMD is 2 hours away I think.

OK brain is hurting need to stop.

3.

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LisaK
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kam, I just finaly got to read all this. so sorry you are going through this terrible ordeal.

I wish i could help you so much!

I am praying hard for you.
[group hug]

--------------------
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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2 hours is at least closer than the 6-8 hours to see the other one - we'll keep working on possible solutions.
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kam
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Thanks Lisa and Robin.

Today's goal is to do a better job of gettign food in me if I am able. And hydrate.

I don't want to let all of this go and have it be another 8 years before I get help.

I did check mapquest yesterday. It is an hour and half to the LLMD that I need out of pocket moeny for treatment and office visits.

Depending on traffic.

Brain is not working well enough to figure out if it is better to see a LLMD that takes medicare due to travel expenses or see LLMD that is closer and I need to pay out of pocket.

Either way I need to come up with the funds.

Brain pressure is not as bad today so hoping body and brain are getting back to bseline soon.

Part of the trouble with this trip was my friend not understanding and her brain nto working well either and being told what I can do by someone who doesn't understand lyme disease but thinks they do understand.

And learning from this trip things on what to do and what not to do.

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kam
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Back at the original plan of trying to figure out going to a LLMd that is closest and doesnt' take medicare vs going to a LLMD that does take medicare but I would need to travel.

Figuring out how much it would cost to see local LLMD vs seeing LLMD that takes medicare.

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kam
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OK. Depression is starting to set in this am. But, health is still not doing well enough to let much of it in.

Disappointment yes. Fear and concern. Yes.

Pressure in brain is over riding most o fthis though.

Hoping to be abel to get the ice cube trays filled so I can get ice in the ice pack bags to help with the brain pressure/inflamation/

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kam
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Received email from ILADS approved local doc

It was a standard reply.

Kind of wanted to copy and paste what they said but not sure if that is legal??

But, agreed with what they said. It takes more than just abx. Each person is different on what treatment is needed. And how long it will take to get ones health back is differnt in each case.

They suggested a port.

Need to call and make an appt for a 15 free consult.

1st office visit is $450. They will give me the name of an insurance advocate so I can bill my insurance.

There is a cost for this advocate.

Since it cost me $300 for my part of the medicare bill when I went to see the primary doc I had been seeing all along ....but was now on medicare...well

At least I was able to make payments to my primary care doc.

OK brain is going.

I do have a relay service set up on my computer. But, need brain to be working well enough to use it.

I do think I will give it a try when brain is working well enough for the 15 min free consult.

If brain is having one of those rare moments when it is working well enough to have a conversation via the phone...I will try that too.

Brain is too inflamed this am to folow thru on things.

As I am typing this, I will reply to the message and once again try and see if I can do a consult via email.

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