(Although I had lyme symptoms off and on for many years earlier when life was under more stress than usual...but none stopped me in my tracks like this time.)

Finally dx with lyme Dec. 2002 due to positive IgG WB with IgeneX and symptoms.

Saw LLMD in Jan. Received prescription for drugs.

Started taking K drug today for 5 days on acidic stomach followed by a hot bath.

Doc also noticed I had a yeast problem. Not to excited about this since I am aware ABX creates a yeast problem.

LLMD suggested I keep appointment with Sansum Clinic in Santa Barbara to make sure nothing else was going on.

3 days of testing and doctors visit at Samsun clinic. Internist suggested I start ABX for lyme on the 3rd day of visit.

Will see if there is anything else going on this Tuesday after I talk to neuro for test results on the work that was sent out...

including lyme blood test to qlab and lumbar puncture for MS panel and lyme panel and blood work for other autoimmune disorders.

I felt like I had a 50,000 mile check up while at Samsun and my confidence in the medical field was renewed...

Samsun staff and doctors very professional and can do attitude among all involved.

Next step in my lyme treatment is two other types of ABX (amox and metron), garlic, acidophilus, and yogurt.

Will also finish taking supplements that I have around the house that are good for lyme also.

And researching more on lyme.

Prayers needed for work. I have been given a heads up for a lay off possibly coming at workn with the State of CA

I have been surprised that work has keep me on the payroll for the past 16 months.

I have mixed feelings about possibly being laid off.

As others have experienced when you have your world turned upside down..you really go through a... once I am well do I really want to return to the life I had and is it time to do things differently.

All I could come up with at this point is...I need to get well and return to work before I make this decision and then see what I think.

I will keep you posted on my journey with lyme treatment.

It includes getting SSDI while I have been unable to work...this is still pending due to lack of dx until now.

Also what neuro at Samsun clinic has to say. A local pharmacist recommended at go to Samsun clinic earlier in my journey as he said my symptoms sounded like a friend of his who was dx with lyme at Samsun.

I had HMO at the time and although I fought the good fight...I didn't know the tools to winning until it was too late.

Glad I have PPO now for a few months.

LLMD said I may be able to return to work in 4 to 5 months. I am hoping for sooner of course..but time will tell.

Note: I should include that I am typing this as I am lying down on my back. The computer is next to my bed and the kepboard is on my lap.

I always wanted a lap top..HA!

I also am only able to get up to fix 3 meals a day and if I am lucky take a shower and get dressed.

I will be out of breath and feel like I am climbing a mountain with a backpack during the activity of taking a shower and getting dressed.

I am not in pain unless I push it too far.

I need to really pace myself each day or I pay for it days afterwards. I have been down for the past 3 days because of the 3 days at Samsun Clinic. I gradually starting to feel human again and hoping to be able to go to church tomorrow.

I am posting this to help myself as well as others.

16 months of being housebound with phyical and financial challenges require stepping outside of the box so to speak.

I lived from pay check to paycheck and was just beginning to put a little money away before this hit.

Although most of the medical field has been negative, the people have been amazing...

with help from taking me to the doctors to household chores to getting me out of the house just for the day every now and then.

I have had times when I only had celery stick and peanut butter to eat...which was really rather good...only to have someone show up with groceries or gift certificates for food.

It is amazing how ones attitude is improved with fresh veggies and other foods in the house!

Along with the knowledge that others care.

My goal: To heal financially and physically.

It sounds like your lyme treatment is moving along. This is good news.

I'm so sorry about the possible layoff, this can very difficult. Sending you prayers.

It sounds like you have a very positive attitude though. It must be those fresh veggies!!

Please do keep us posted on how you are doing and take care of yourself.

You said,
"My goal: To heal financially and physically."

What a wonderful goal, good for you!

Hugs,
Beverly

I think its wonderful that you have a venue to share your saga! Expressing the struggle may help you cope with it, escecially now that you are on the path of treatment!

As I said earlier in the saturday night chat - you are one day closer!!!!! AWESOME

I hope that you keep us all posted on your progess.... I will pray for your goals of healing financially and physically!

I hadn't received any mail from you for a while...so...I'm glad to see your e-mail.

And the great treatment you received at the clinic.

Rock the house.

By the way...what is K?

That is to clear the yeast/fungus that the LLMD doc said I had.

I don't know if it is the Keto drug, the Lumbar puncture or the hot baths that I have been taking twice a day as recommended by the LLMD after taking the KETO drug, but I am not doing to well.

I am fine if I am lying down. This is good.

When I try to get up and move about...my head doesn't do so well. (Lumbar Puncture?)

I know in the past that hot baths would do me in so it could also be the hot baths slowing me down to a stop.

I will be glad when I stop taking the Keto..drug and stop the hot baths.

Hoover Round called today regarding getting an electric scooter to help me get out and about.

I sure hope the insurance approves one. I have needed one for 16 months now.

They can not use the lyme doc but need a primary doc..so I am looking for a primary doc.

I also need to turn my car in. The lease is up on the 9th, but insurance expires on the 27th of this month.

This will be the first time since 1967 that I have not had wheels.

I will be glad when I am able to work again so I can have wheels again.

I also hope that Toyota is reasonable about the fees I will need to pay at the end of the lease.

I am 2,000 miles over the agreed mileage..but this would have been much worse if I hadn't been sick the past 16 months and not able to be out and about.

I hope you all are doing well today and counting your blessings.

I found out I will have the money to pay utilities and rent...this is a relief and a good thing.

Who would have thought I could have survived being housebound for this long?

A friend from church came over and brought dinner, did the dishes and sprayed for ants yesterday.

This is good. Oh yes. Her son emptied the water crock as it was full of ants.

Guess I need to put a "no swimming sign" on my water container.

When I look back to when I first posted on lymenet, I am so thankful for those who helped me see over the big hills I was facing at that time...Kent, troutscout and others.

I just received an e-mail from Trent and Troutscout so I have recall on them. The others were important too, but live in the moment with the dreaded leaded duck disease (Finally named Lyme)

I call the neuro at Samsun Clinic tomorrow to get the test results of lumbar puncture (lyme and MS panel done) possibly blood test by qlab for lyme, possibly cocci blood test results and blood test results for immune disorders.

Started Amox and metron today along with acidoph.

I had a good day. First day in 6 that I have been able to get out and about...even if it was short out and about trips.

Still waiting for neuro from Samsun clinic to call.

Still waiting for garlic from hepapro.

No pain/pressure in the head today. I am so glad.

Well, time to take the reclining position. OK. I am reclining now.

I will recline for a while and then try to get up and some things around the house such as take out the trash, do the dishes, get groceries, put the clothes away, fix the dryer, pay the bills, balance the checkbook, pick up in the front room, unpack from the Samsun trip.

OK There I go thinking I am normal again. HA!

We'll see how it goes today. I am concerned about getting these things done before the ABX kick in.

I have heard that I should expect this to get worse before I get better while on the ABX.

Count my blessings: I finally have dx after 16 months, I have insurance to help pay for the meds, I have a nice, quiet, peaceful place to live, I have food and clothes. I have a computer that is on line. HA!

Glad you are on the good stuff.

Things will "feel" worse before they feel better....so, stick in there.

Symptoms: Dry cough, head cold, difficulty with mobility and cognitive skills.

Weakness in body. OK if I am lying down.

Tingling in hands for a few seconds today.

Ringing in left ear off and on..mostly on.

Difficulty with vision...OK if I close my eyes and rest. Then able to read for a short time.

Shortness of breath with physical fatigue.

Physcially fatigue extremely quickly as if climbing a mountain in high altitude.

Need to lie down to use computer.

Physically fatigue too quickly if I try to sit upright. The body will just not hold itself upright.

(I have been lying on the couch or bed for the past 7 days..with the exception of a few short activities as probably mentioned above.)

It is normal for me to be able to do things for a short time after reclining for several days. Or for a few hours in the morning after staying down most of the afternoon, evening, and having a good nights sleep.

Yammering.

Today was a good day. (But, I have been known to have good days in the past 16 months without meds.)

I was able to walk the two short blocks to the coffee shop this am. I also was able to take a shower, fix breakfast and get dressed.

Yes. I had to pace myself. And yes, I had to lie down while I was at the coffee shop.

But, I did regain my strength and I was able to walk back home...slowly..but I did it.

I also was able to put a load of laundry in, take out the recycles and pick up a little in the front room. I'm on a roll here.

Yes. IT was piece work. Do a little. Rest a lot. Do a little more. But, it feels so good to be able to do these things.

I also drove the 20-30 minutes to work and back in order to pick up some paper work. Yes. I reclined the seat there and back, but I made it. (Only hit a few cows, but...who let the cows out!)

Wanted to stop and visit with people at work, but knew I wouldn't be able to walk out to the car or drive home if I used my energy for visiting.

Then I came home and rested. Got back up and was able to walk the short block to the bank and back.

I am so much happier when I am able to get out and about and do things around the house.

I tend to over do it and then need to stay down. Pacing myself is still a puzzle to me.

I just do what I can when I can.

The neuro from Samsun called. He said my spinal fluid was fine regarding...no MS.

He didn't mention what the outcome was for lyme or cocci.

He is going to send me a plan for physical therapy to keep my muscles from atrophy, make an appt. with an infectious disease person, and a psych. (I told him my cognitive skills slowed way down with this along with my motor skills.)

He said no to the electric scooter. But, that is OK. If I am going to be back to normal in a few months, I don't need it.

I asked the neuro if it was only lyme that I am battling? He said I needed to see the infectious disease person and told me how great he is and what his credentials are.

Of course, my mind recalled everything he said..NOT! I even had a pen and paper ready.

The brain I had before lyme would have taken it all down. The brain I have now just looks for the main points.

When I was walking back from the bank, my feet felt like they had been out in the snow.

It wasn't that they were really cold. It was as if they had gone from really cold to no feeling at all. Strange, but consisitant with what I have coined this...The Dreaded Leaded Duck Disease.

I also left a letter to the head of the department at work giving her an update.

I sure hope they continue to hold my job open for me.

Did I tell you, today was a good day as far as being able to do a little more than usual!

[This message has been edited by kam (edited 24 January 2003).]

had to read it twice more before I got that she Sprayed For Ants

Seriously, I don't usually hang aroung General so much, but I will now because I really want to follow your story....

By the way, Mepron did wonders for me. (And yes the ringing ear and muscle twitches are pretty normal) I was bit in April and have been pretty much all A-Ok since October.

I am doing a "mop-up" course of Flagyl which I hope will be it for the big boy antibiotics (only 10 days left- but who's counting? ha ha)

Keep these epistles coming KAM!

I'm glad that you had a "better" day - and were able to get out of the house. Please keep us posted as to your progress -

I have had a relatively bad week, so I haven't been able to make it here much... but I have been thinking about you, wondering how your first few days were going.. and was very happy to find this thread here with your updates

Forget the shower today...just get dressed.

Walked to the coffee shop. Laid down. Walked back. That was my big adventure.

Tried to put clothes away...got 3 items in drawers...exhausted...laid down and rested...hung up a few more shirts...laid down again....put 3 more items in drawers.

Is this really lyme? Read some posts..especially the one about sick and tired of being sick and tired...OK...this could really be lyme.

Joined in on Saturday Night Lyme Chat.

Will try to put some more clothes away before bedtime.

Still have head cold. Had trouble swallowing last night. I am OK if I keep lots of water down me.

Hmm. Good day. I got out of the house 3 times.

Walked the two blocks to the coffee shop twice and walked the block to the post office.

A friend helped unpack some more books. I only lasted about 10 minutes and then had to recline.

She then did the dishes while I was trying to recoup.

And I finally got the checks recorded in the ledger and two bills paid.

I needed to do more, but I still am not multitasking. It was really too much to get two bills paid. One would have been better. So bizarre. I will be glad when my multitasking skills are back.

Stayed in the clothes I slept in last night so I had more energy for other things today.

Took a hot bath in the evening. That will be about it. I will not be up to much else tonight.

Oh Yes. I can breath now. I woke up in the middle of the night realising I could breath through my nose again. This is good.

The brain fog is just the meds now...the cold is gone. Hurray!

Still trying to choose a primary doc. Decision making is so slow now a days.

Or is it because it is so difficult to find a doctor and staff that do their job?

Looking for one who is trained in eastern medicine and western medicine...looks like I will need to travel.

All in all. It was a good day. I just need to remember to move very slowly when I am trying to walk or do something.

But, at least I am moving.

I am not feeling so well...kind of like I have the flu or something.

This too shall pass!

I did walk to the coffee shop again today and back.

Mobility seems to be improving, but it is too soon to say.

I have had times in the past when I thought I was getting better only to have to hit the couch again and wait it out.

(This was before meds. IT will be interesting to see how things go now that I am on meds.)

Physical Therapy did not go well. I was only able to do about 4 exercises on my back for 5 times. The two with multimovement were very difficult.

It seems there is something going on in the brain. It can only do one thing at a time.

My hope is that it will reprogram.

I am so weak. I need to stop typing now because the body is just not cooperating.

I sure wish I understood what is going on and what to do.

The CD I am playing is helping with the relaxation. It is a nature CD.

I am wondering if this is my imagination or if this is going to stay, but it seems my head is clearer now and mobility is different.

It is only 6 am in the morning so we shall see how things go.

Yesterday was a good day. I drove the hour and a half to the nearest acupuncturist.

I had more stamina yesterday than I have had in a a long time. It was dusk and I walked to the post office and back..only 2 blocks.

But it is highly unusual for my body to still be going at that time of the day after being on the road for most of the day.

It is highly unusual for me to drive myself anywhere!

The hour I was reclining on the acupuncturists table helped me to recharge so I could drive myself back.

Thoughts of returning into the main stream of life are flooding my head.

As Ashley Brilliant said, "I try to take one day at a time, but several days are attacking me at once."

My mind is filled with anxious thoughts about paying the medical deductible of $500 as soon as possible, paying the 20% of all the lab work that was done at Sansum Clinic, turning the car in next week, paying the fees at the end of the car lease, paying the people back who have loaned me the money the past 16 months to keep a roof over my head, having transportation to and from work once I return to work, etc. etc.

Where oh where am I going to come up with all of this money? The trees outside look like my financial resources at this time...pretty bare.

I am thinking as if I am well for the first time in many months.

I am not going to the computer to try and research what is going on and what to do about it.

I think I just need to get up and try to take a shower, get dressed, eat breakfast and go for a walk around the block.

Then we will see how spiffy I feel. HA! Wouldn't it be great if I was still feeling spiffy.

Hope to see some of you at the Saturday Night Lyme Chat tonight.

PS. My LLMD called while I was out yesterday. He left some possible appointment times for next month.

Then he said something I am still am in shock with: call me if you have any questions or just want to chat.

After 16 months of being conditioned otherwise with doctors, I am having trouble accepting "normal".

I also found out Blue Cross only credited me $68 out of the $210 I paid toward medical costs.

This certainly does not make sense.

I have had medical insurance for years. But only went to the doc for once a year check ups.

I had no idea what the medical field and insurance companies were really like until the past 16 months.

I certainly have mixed feelings about all of this.

_____________________________________________

Well, I got up out of bed and made breakfast. That exhausted me. I went back to bed and slept until lunch time. This is unusual for me, but usual when I have had a good day the day before.

The good news is that I was able to sit at the table and eat breakfast and to my to do list while I was eating.

I have not been multi-tasked very often since this hit.

My body did feel like it was filled with lead while I tried to stand, sit or walk.

I am fine if I am lying down.

I received my 10 day shut off notice on the city utilities today. Hopefully, that will all work out too. I have heard that there is a center here I can take the bill too for help. I have called them once before, but the money came through and I didn't need them.

I am going to try and take a shower and get dressed next...after lunch that is.

I heard about the Shuttle. Ouch!

Cool it. I know that's easier said than done, but you will only wear yourself out. So take it one step at a time. (When possible- Ha ha ) Really- go easy on yourself. It will pay off in the long run.

I don't know if it is my imagination or if I am getting stronger.

It is little things...like being able to walk in and out of the grocery store yesterday to pick up a couple of things instead of using the electric cart, being able to take a shower or bath almost every day again, being able to sit at the table to eat because I am not too tired to sit after fixing me something to eat.

I know that this thing cycles and I have had these times in the past. So, I don't know if it is part of the cycle or ABX or the trip to the acupuncturist and the herbs she gave me to build up strength or all of the above.

I just think something is going on here and that time will tell.

My cognitive skills seem to be slowly improving also. I did go to the grocery store yesterday for a specific reason and forgot all about that reason until I got back home yesterday.

And I needed help with filling out some forms yesterday because it took all I had just to be sitting in the chair at the am meeting. But, I was sitting in the chair.

And by the afternoon, I was sitting up and reading my book on Lyme. I have only been able to read a book once during the past 16 months and it was very difficult because of the blurred vision. This time, it was as it use to be before lyme.

A friend brought over some money to pay one month of the two months I am behind on the city utility bills so I will be able to keep the heat and water on in the house. This is good.

Another friend brought over some fresh veggies and fruits. This is good.

Now, I just need to come up with the money to pay for the appointment with the Lyme doctor at the end of the month.

Another friend is sending me $50 so that is a start.

Lymie Pie: My eye sight is still not that great. I have looked several times to see about "praying for the ants" in case I needed to make a correction and still can't find it. HA!

By the way, the aunts haven't been around lately!

And it seems the acupuncturist was a pharmacist and a MD before she became an acupuncturist and herbalist.

She put together what looked like tree bark and some other things and told me to make a tea out of eat and drink it 2 times a day.

She said that eastern medicine goes about treating lyme differently than western medicine.

She is trying to build my immune system up.

Since the insurance will cover 60% of the bill, it is worth a try at this point.

A friend of mine was not getting better from valley fever so she started to go to her.

My friend is slowly getting better now.

It is amazing how health affects your attitude also. If you are not feeling well, you tend to look at things from a negative view point. Once you start feeling better, things start looking a lot better.

Nice to hear you are reading and stuff. I remember the fall of 2001 when I was herxing on Levoquin for a sinus infx....pre-dx....wow, I couldn't read or pay attention to anything.

Very good news.

I am happy you have such good friends to stop by and take care of you.

My prayers on your recovery. PS..it is my experience that just before and immediately after a herx...I feel the best.

My LLMD suggested I have the primary doctor handle any of the paper work that I need done.

When I saw the doctor, he said what can I tell you about lyme. I told him that I would be surprised if he could tell me much about lyme at all since most doctors do not know much about it.

He said that he went to an Ivy League School on the East Coast so he knew about lyme. He said New York (I believe) has the most incidences of lyme and then California was next. ( So far so good.)

Then he wanted to know what my LLMD had recommended for treatment and how long I was going to be on the abx because he didn't want me to be over treated.

He said I just needed 4 weeks of abx to shut things down.

I responded with there seems to be controversy on that subject between Yale and the doctors who are actually treating patients with lyme.

I then took a copy of my test results from IgeneX. He commented that Igenex seemed to contradict itself because I was negative on one test and positive on another.

When I have asked my LLMD to fill out some paper work I have needed, he told me to have my primary doctor do this.

When I ask the primary doctor to fill out the paper work that I need, he said to have the LLMD do this

Hopefully, the LLMD doctor will reconsider next time I see him. I walked out of there thinking that these doctors have got to do more than just shake peoples hands and get paid. I must really be missing something here.

The good I was able to drive to and from the doctor's office. It was a 2-hour drive one way.

I am having to stay down now, but my hope is that I will be able to get back up and do a few more things today after I recover.

I also must admit that I was so physically fatigued when I saw the doc that just being there was a success.

I would also like to add that I didn't see daffodils and lilacs but, I did see some small purple wild flowers along side the road and my favorite trees were blossoming with the pink flowers I usually see on the west coast this time of the year.

That was worth the trip in itself!

It is day 19..2 1/2 week mark. I had difficulty breathing through my nose last night while I was trying to go to sleep, have a little sore throat like feeling in my throat and feel like I am coming down with the cold/flu.

I mention this because this is what happened right before I started herxing last time and right before I came down with all of this 16 months ago.

I guess time will time.

It has been really nice the past week. I have been able to sit upright. I am so glad. The world looks so different when you can stand or sit upright.

I wasn't concerned about getting in the car and driving somewhere...although I still paced myself in that department and made having the strength to get home top priority.

I am planning on writing a letter to my attorney this afternoon to see what he thinks about closing out the workmen's comp case and focusing on getting SSDI.

I know that one of my students came down with the bulleye rash right before I did, but I did not document my "bite" when I got it.

And the lyme doc said I could have gotten it from work, from the trip I had just taken to the mountains, from home.

So, I am guessing getting workmen's comp is out of picture at this time.

I wonder whatever happened to the student. I know I sent him to medical and that was the last I saw him.

It was the end of the term and time for new students.

I have got to get back to work and quit talking to this computer. HA! At least it is better than the dishes. :-)

I do want you to know I do have people stopping by to see how I am doing every now and then and I do get out.

It is just not the same as being in a classroom with lots of interaction.

Which is good at this time. I would be in overload. I am still learning to drive the car and listen to music again. That multitasking stuff is coming back but I need to be patient.

I kinda feel like you are leading the way for me, since I'm 2 weeks behind you - I know that we are all different, but its comforting knowing that there is someone one step ahead of me!

Keep us posted
Cayce

------------------
"We are, each of us, angels with only one wing. And we can only fly embracing each other."

But, my body is shutting down again.

It certainly has been nice to be a little bit "normal" lately.

Wait a minute this is day 23...ok 3 weeks...3 times 7 = 21

I don't know about the rest of you but I am really having problems with numbers.

I don't know if it is the Questran Light Powder I took yesterday or it is just time to herx.

But, my body is shutting down again.

It certainly has been nice to be a little bit "normal" lately.

And I am glad that I did get food in the house yesterday. So, I guess I just need to wait this thing out. All else will need to wait. Breath in, breath out. Move slow. Stay down.

Toyota offered to extend the lease. I took it. I was feeling so well, I was hoping to return to work next month.

Now, that I am back not feeling well...I am still hoping to return to work next month.

I only went to the acupuncturist/herbalist/md once. It is not in the budget at this time even if the insurance will possibly pay 40% of it.

I will no longer have insurance unless I am able to return to work in March.

I am hoping this too shall pass!

My thoughts and prayers continue to be with you.

I'm glad that you were able to at least temporarily resolve your car dilema. I know that it is not 'resolved'(and that there are many loose ends, especially concerning money) but you are not feeling the pressure of making that decision, and the less stress on you, the more energy your body has to dedicate to healing itself.

I'm sorry that your feeling worse - please keep us updated, ok?

Cayce

------------------
"We are, each of us, angels with only one wing. And we can only fly embracing each other."

I continue to be very limited in what I can do today. Lying on my back reading things on the computer, watching a few TV shows while laying on the couch, etc.

It is back to being a challenge just to fix something to eat again.

I fixed a smoothy to drink for lunch and now can't recall where I put it! I know it is around here somewhere! I have lost it twice and found it once.

These times makes one appreciate the other times so much more.

Still very limited on what I can do. Climbing Mt. Everest is out for right now.

Walking slowly from the bed to the couch is the big adventure for now. Sitting up is out.

Will I be ok enough to make it to church tomorrow? It will be my 4th day tomorrow. Last time the herxing just lasted 3 days.

I received a letter in the mail from social security denying my claim for disability on the grounds that all the reports they received in August and September of last year say I am as healthy as a horse.

Called and left message with attorney to see what the next step is.

Sent application off yesterday to see about getting help with utiities. I sure hope that comes through before the utilities are turned off.

Printed out taxes yesterday but don't have what it take to get that off in the mail right now..maybe later.

Did taxes on line on the 9th. Boy, things sure move slowly when you have lyme.

It took me 3 times and several days to figure out what I needed to do next on the step by step H&R Block sight. Cognitive skills are just not there right now.

It is a good thing I could just close the program down and go back to it at another time.

It is good my computer is next to my bed so I can lay down and do the work.

Can any of you relate to this?

The moon...hasn't affected me...so far...this time around.

I just went thru a herx week...Sucked.

I can relate to everything you said.

trout Scout

Keep up the great attitude.

It is 6 days now. The pain/pressure in the eye is back. I am thankful that the excedrin helped with that.

Not tired, but keeping eyes open is tough and of course any movement.

I tried to get out of the house twice today. It was not a good idea although it seems very nice out.

I did get the taxes in the mail box by walking the block to the post office.

I wasn't sure I was going to make it back and there wasn't anyplace to lie down.

Remind me not to try that again until the system is working better.

I am trying not to let fear over take me here. The fear of not having a car, a place to live, my health returning.

Think positive. This too shall pass. It will be all right.

I also am feeling anger. Why is it that we do not have home health care at times like this?

Count my blessings instead...a lady from church brought over some chicken soup and I have had that the past few days to eat.

This is good...because fixing myself something at this point is not realistic.

I have a roof over my head, a vehicle, the utilities are still on, food in the frig, clothes to wear.

Take it a day at a time. Do not worry about tomorrow.

Breath in...breath out. Do want you can for now.

Sent e-mail to Lyme Disease Foundation regarding what the stats were for being cured.

They responded with there are no stats.

I responded with what are the stats for those who have been able to return to work.

They responded in large font...THERE ARE NO STATS!

Very discouraging.

I tried to call the Lyme Disease Foundations Hot Line...it just kept ringing...no answer.

Talked to attorney's office about what the next step is towards SSDI since I received the denial.

They said it doesn't look like I have a case since all my medical records show that I am fine.

I asked them about the records that show I have lyme.

They said they would get back to me in 2 hours..that was 8 hours ago.

I guess I better give them another call to see what happened with that.

I am fine as long as I stay lying down and don't talk.

Activity is very limited. I am not a happy camper.

I did lie on my back and type out two letters to send along with the booklet on lyme from the Lyme Disease Association.

You are in my thoughts and prayers every day.
I know that it is difficult to stay in the moment and take all of this one day at a time, but it seems like you are focusing on that - which is very good!

Have you heard back from the attorney yet?

This attorney is for your application and denial of social security disability, I know... but have you checked out SSI, supplemental income, at either state level or through social security? Have you applied for food stamps etc?

Just curious... I don't know much about these programs at all, but it couldn't hurt. Other than its more work for you to do, when your not able to do anything - its so rediculous how this system of ours works!

My prayers are with you
Wishing you health and hope!
Cayce

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"We are, each of us, angels with only one wing. And we can only fly embracing each other."

I am wondering out loud here...has anyone thought of contacting the ACLU about the infringement of our rights as sufferers from a disability, and the fact that EVERYONE fights us....American with Disabilities Act has restrictions on crap like this.

I must say...Kam, 3 months ago I thought I wouldn't be able to work for a year or two.

Guess who is working again...albeit part-time....BUT......I am a couple of years ahead of myself.

SO....keep up the attitude.

I'm praying for you and my dear friend ArtistDi as the two of you as individuals are really hitting things hard right now.

PLEASE remember...you can temporarily stop abx for a day...to recover from a herxheimer..you DO NOT want to push a herx. They CAN and WILL cause permanent damage, if not death, in some cases.

Kent

The herxing has finally stopped. I know because I just touched my head and it is still there.

In fact, my whole body is still intack. This is good.

I am up and about now..but very slowly and down more than I am up..but that is OK.

I even went for a walk around the block this am.

And did you know there is blue carpet under all those clothes that were on my bedroom floor. HA!

I even took a bath and washed up for Saturday Night Lyme Tonight. HA!

Big social event at this time. HA!

I wrote a letter to the attorney and sent it along with the booklet on lyme I got from the Lyme Disease Association.

I got a Birthday Card from his office signed by all of the staff.

I think that is good PR. I have only been in the office once in the past year or so.

Heard from lyme doctor. He still wants me to continue on the amox. This means I stop the mentron (flagl) when I run out.

Received $35 from SBC for changing back to their telephone service. This will help to pay the telephone bill for this month. This is good and a relief.

Glad to see that you made it through.

I'm feeling sad that I missed my big social event of the week last night - Sat Night Lyme Chat... I wasn't feeling up to it.

Keep up the good attitude - you are very inspirational to me Kam!

I missed you at the Saturday Night Lyme Chat.

I hope you are feeling better soon too.

What week are you on with the abx?

My hope is that he will release me to go back to work. I am concerned about how I am going to pay the bills if he doesn't release me to go back to work.

I also am concerned about how I am going to be stronger enough to work if he does.

Catch 22. HA!

I am feeling pretty spiffy this am, but I haven't gotten out of bed yet. HA!

I will see how I am doing when I try to take a shower, get dressed and eat breakfast.

Anxious to hear how your second appt went!

I'm sure your exhausted, but please let us know when your up to it.

I'll send you an email to fill you in on my progress...

Wishing you health and hope
Cayce

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"We are, each of us, angels with only one wing. And we can only fly embracing each other."

I got home, checked the mail and found...24 hour shut off notice, we are going to come get your car if no payment by...., cancelation of auto insurance if no payment by...medical bills from Sansum Clinic (over $12,000 so far) and then the Landlord knocking at the door to pick up the rent.

I had the money for rent. This is good. And I think I can make payments on the utility bill if I can figure out where I will get the money to make payments.

I have been so fortunate. I have been on my own for many years and have always been able to pay the bills. I do not ever recall receiving shut off notices or cancelation notices until now.

I did receive notice that I will have medical coverage until March 24th. This is good. I thought it was going to end in Feb.

I just need to come up with the deductible and my percentage of the bill so they will do their part.

The doc said I would probably be able to return to work in May. This is good.

That means I will get a pay check in June.

RE: Doctors appointment....

I woke up at 6:30 am. Left the house at 9 am. Arrived at the doctors office around 2:00. Laid down in the waiting room to recharge my batteries.

I was feeling pretty spiffy that I had been able to drive there myself. Getting out of the car and walking was starting to get rough.

Felt better after I laid down for an hour or so.

Got back up and was doing fairly well for a short time with the doc and then body started to shut down. ( I sure wish I had some type of gage to give me a warning when this is going to happen.)

TAlked myself to my friends house close by and stayed down the rest of the night and into part of the next day.

Drove myself home and have been down every since.

The good news is that I did drive myself. The hills were green. The skies were blue with white cumulus clouds. The orchards were blossoming with pink flowers.

That in itself was good for the soul.

I will be calling Igenex Lab on Monday to get the kit to test for co-infections.

And going to the pharmacy to fill Doxy, diflucan, and amox prescriptions.

Also need to keep up Qestron and physical therapy, hot baths or some thing to sweat out the toxins.

Cried on the way back. You just don't know what is going to hit you. Dr. H had mentioned that he was doing a lot better.

He has lyme also.

He said he had been running in the sun lately.

I don't know why that brought tears to my eyes. I just don't realize how tough this condition is at times.

Something like running in the sun is such a good thing to be able to do. I am so glad he is able to do this again.

It is one of the first things that I noticed when this hit. I couldn't run and the heat really bothered me.

I have been down for almost 7 days now. I am not sure why.

I sure hope it lets up soon.

I am still waiting for pharmacy to fill diflucan prescription. It has been 4 days now of waiting.

Trout

It is reassuring to hear from you.

OK. I will quit fighting this and conserve my energy.

Makes sense.

And I will try some mineral water, but I am not much on stuff that has carbonation in it.

Hopefully I can find some without.

I went with a friend to look at campers. She has a nice, comfortable pick up truck so all I had to do was sit back and relax and watch the scenery.

I did get out and look at a few the trailers she is considering..but I moved slowly and sat often.

Today I was able to drive myself to church an hour away and back. My body is telling me to stay on my back the rest of the day.

I have a workmen's comp hearing 2 hours away tomorrow.

I hope to get the diflucan tomorrow..it has been a week now of waiting.

And I am getting more white spots..doc says that is a type of fungus and the diflucan will help.

I go to Samsun clinic Tuesday. I got the test results from Quest Lab and unilab that they did for lyme. Negative.

I also received the test kit to test for co -infections from Igenex yesterday.

I think I will see about having Samsun's lab draw the blood while I am down there.

And I have a cat scan of the chest and abdomen locally for UCSF Wednesday. They are still considering Myasthenia Gravis or some other neuro muscular condition. I told them I had lyme, but they still want to rule this out.

Since I have been waiting over a year for someone to do the testing to rule out all these conditions that were mentioned, it is good to finally have it done.

Changing to a PPO has really helped open up some more doors.

I broke down and got a pill box. I am glad I did. I have the pills all set up for the next week 4 times a day.

Now, I will know if I have already taken the pills or not. Or if I have taken them. HA!

And when I am traveling on the road, I can just take the row with that day in it with me.

Thanks for the idea of the pill box
Now I just have to remember to get one the next time I get out of the house - we'll see if that happens

Lymie brained me didn't think about it - but I am always trying to remember what I've taken, or if I took this or that!

The only problem is my inhaler won't fit into one of those boxes - HA!

Glad you were able to get out and about today Relax and rest up for your next two days, sounds like alot happening at the beginning of the week!

I am hoping I am stronger today..I know I am smelling stronger. HA!

I had two cat scans yesterday locally. UCSF is still checking into other reasons for my symptoms besides lyme...but my bet is all will come out fine and lyme will be the bottom line.

I think they are looking into Myasthenia Gravis as a possible reason for my symptoms.

AFter a year and a half, it will be good to finally have all these conditions ruled out.

I also have an appt. for a SEP and VEP at UCSF the end of this month. This has been going on since November.

I had the lab work for co-infections done and sent off yesterday to Igenex lab.

A friend sent me $100 for my birthday so that helped with that expense.

Paying bills is very difficult at this point. I really need to pray about which things to spend the money on and when.

So far, all has worked out. I am in awe of God's grace and mercy and so thankful!

I also heard I was approved for help with the city utilities. My hope is that the money will come soon. It will help to pay for the past two months owed.

And I found out I will have medical insurance until April(I was orignally todl it would cancel in FEb) Since I hope to start back to work in May, this looks good too.

I sure miss my B-12 tablets. I really felt like they were helping with strength and cognitive skills.

I will be glad when I can order some more along with the vitamin C and mult vitamins and minerals.

Having a balanced life is my goal now and when I am back in the main stream of life.

I also came up with enough money to keep the car insurance from being canceled at this time.

Money is still a big concern. I am going to be a health coach for Trivita when I have the funds to do this.

I hope it will help to supplement my income now and after I return to work.

If it just helps to pay for the supplements, I will be thankful.

And I like the idea of helping others improve their health after experiencing this condition.

The insurance company gave me and the pharmacist several different answers as to why I could not get the pills.

They were still saying no when the pharmacist ran a lower dosage and less pills through the system and it worked!

No. No. No. It is supposed to be Good Morning Lord.

It has been 6 days since I had my almost normal day...drove to Santa Barbara.

I am not sure what is going on. But, I am not able to do much and I don't like it.

I know others are going through much worse and I will get through this.

The thought crossed my mind to put a gone fishing sign on my front door and hibernate for a week.

But, I know that I will not do that. I will get up and try to do what I can each day.

It seems the only thing I am able to do each day is eat 3 meals, take my meds, get the garlic down me 2 times a day, eat the parsley, and communicate through the keyboard while lying in bed.

Not only is my body not cooperating on most things, but my mind isn't either.

I am on my 7th week I believe of abx and my 4th day of diflucan.

The dishes are high, the trash is overflowing, the debts are high, I can't see the carpet in my bedroom floor because the clothes are covering it and the coffee table is covered with papers and other papers I know where their at one time I can't find.

The kitchen floor and the carpets have only been vacuumed or mopped a handful of times in the past year a half.

I know some people live like this all the time. I do not. I prefer to have things clean and organized and will be glad when they are that way again.

I guess you could say I am feeling trapped.

Mostly I don't like the fogginess of my mind.

OK Now that I have looked at the negatives, things don't look so bad at all.

There is so much more to be thankful for. Where is that thankful switch. I need to find it and turn that other switch off.

This too shall pass.

Today was a good day. I was able to be upright and get a few things done. I now have clean dishes and am working on catching up with the laundry.

Tomorrow I drive to Sansum clinic. It will probably be at least a 10 hour day.

I hope that I am not down for 7 days afterwards like I was last time I made the trip.

Still having trouble gettng the diflucan from the insurance company.

The amazing thing is that I did it. I drove myself and sat up for the most of the time.

I was there to see a pysch.

I had difficulty with my eyes on the way back and stopped at a coworkers house around dusk. They drove me the rest of the way home.

I also had to crawl to the bathroom and then had my arms fold under me when I tried to crawl into bed.

It is Saturday now. I stayed down all of yesterday and it looks like I will need to stay down again today. My arms still are so weak they hurt.

I am not sure if the trip was worth it yet. I will know more once I go back for the test results.

I no longer have any diflucan. The insurance says they have not heard from the doc regarding the form they need in order to ship me the diflucan.

I will e-mail the doc again.

I have an appoitment with a toxicologist with workmen's comp in Visalia next week and SEP/VEP testing in SF through their MS Center.

This should just about do it for the box of tools the medical field has.

The only thing that hasn't been down that was suggested when this first began is a MRI of the lumbar spine.

My plan is to continue with the abx and the LLMD and hopefully get back to work by May.

The utilities, car payment, auto insurance, and medical bills are all behind and overwhelming.

It certainly would help if workmen's comp would be approved and I started to receive the checks.

I am thankful for all that God has provided this past year and a half....most amazing.

But, spirits are low at this time. I know they will improve once I am able to get up and about again.

The good news is that I drove myself to UCSF Medical Center and back. I went up the night before.

I had the SEP/VEP that was recommended in Oct. 2001 and finally being followed through on.

The bad news is that I am still trying to recover from the trip.

I want to jump ship. I want to get off of this old, lady, debilitated body, poor cruise ship and get on the young, vibrant, healthy, prosperous cruise ship.

You say I missed the boat...too late..lyme or no lyme...dang!