I am starting to feel human again after 3 or 4 weeks of little to no mobility or cognitive skills interspursed with 3 intermittant days of being able to travel and be almost normal. I think that is what put me down for 7 days each time afterwards...one day of going to the docs 3 or 4 hours away.

I stopped taking the drugs and eating one day last week. I just had water and carrot juice. The next two days I only had 1/2 the drugs and 1/2 the meals for the day. Not intentionally...it just worked out that way.

Just very low functioning.

I am hopefully back on track now. I am going to focus on getting at least 2 scoops of Questron down each day if not 3 along with the garlic, meds, meals, parsley, carrot juice and water.

I have even made a chart to help me because some days I don't know what I have done and what I haven't done. And I am learning I need to check it off as I do things because if I wait, I can't recall what I did.

The bills look like they are going to be paid this month. Amazing. What a relief.

My hope is that I will be back to work in May. Then I will just need to get through May. IN June I will start to have a paycheck coming in again.

AT this point, my health is not improved enough to return to work, but I want to give it a try.

Being at home the past year and a half certainly has not improved my health.

I have not gone to physical therapy in at least 3 weeks because I was not able to physically.

I may start up again this week. I go two days a week for one hour and do very little compared to how active I was before.

I have not gone to physical therapy yet.

I did go to UCSF neuormuscular center. I was lost for an hour and a half in the city of SF before I found the parking lot. Walked the two blocks to the office and was short of breath and completely drained.

Doc did not have the test results for cat scan, VEP/SEP. Wants to do an EMG. And concerned that I had not seen a good pulmonary specialists.

I got lost on the way out of SF...ended up staying in a tent cabin in Big Basin Redwood State Park. It was tough to be there and be in so bad of a shape. My mind and body were gone.

I had planned on driving to SF and back in one day, but my mind wouldn't allow it.

Doc. prescribed zoloft. I started taking it Saturday. I have been sleeping around the clock.

Sent email to doc. She said I must be sleep deprived. It is true that I didn't sleep Wednesday and Thursday very well..but I don't know why I am still sleeping around the clock.

Still need to find a primary doc. Insurance is running out end of this month.

Still hope to return to work in May. Not sure who is going to release me to go back to work.

Feel I need an electric scooter and cooling vest in order to get back to work...30 minutes from parking lot to classroom..legs will not get me there at this point.

I am concerned because options are not looking good right now.

I became a Trivita Health Coach. I have 24 customers. It is good to find something that I can do from home and that I believe in.

I just need to lie on my back next to the computer or lie on the couch and make service calls.

I find that on a good day I can do the computer for about 40 minutes. I haven't tried the service calls yet.

I no longer have insurance but I did get the abx refilled before it ran out so it will last me awhile.

I received a notice from the low income apartments in town that they may have an opening. This is good...I think.

I just need an income now. Hopefully Trivita will help with this.

The sublingual B12 seem to be helping with the fatigue more so than the zoloft.

I also started taking Trivita's acidopholus and other supplements in order to build my body back up...they came with the business box.

The zoloft depresses me and I sleep a lot.

The issue of workmen's comp doesn't look like it will be settled until after June.

Who knows how long it will be before I hear from SSDI.

My hope is that I am well and back to work before these issues are settled.

I stopped all meds the past 3 days. Only took 1/2 zoloft and one diflucan today.

My latest thinking is that I got valley fever the same time everyone else did at work because of the same bizarre symptoms and also got bit during this time.

Either way, the diflucan will help. It treats valley fever and yeast if that is a problem.

I talked to a representative from the CFS Association and she said I had CFS instead of Lyme.

That is the problem with this. Everyone has their own opinion on what I have.

Only my LLMD has come up with answers as to what to do to get better.

I really don't know what I have been out of it the last two months but I am doing what I can to get a little bit of myself back.

I was able to go to the grocery store yesterday. This is good. I used the electric cart and got quite a bit of stuff because who knows when I will be able to go again.

I no longer have insurance, but I am OK with that for now.

I need to turn the car in. Farmers sent me a cancellation too. I am not sure if it is because of the two tickets or because of the illness but no one seems to want to insure me at this time and I really can't afford it.

The LLMD said he would fill out the paper work to try and help me get an electric scooter but it was too late for the insurance company to process it.

I recieved my health certificate from TriVita. It is a nice one. I hope my body and mind follow suit soon.

I will be looking at the low income housing Thursday.

A Congressman's assistant called today from my email back in Feb. asking for help with getting SSDI.

She said she would look into it.

I was able to borrow enough money to pay rent this month, but that is it. It will be interesting to see how the other bills get paid.

Hopefully TriVita will bring in some income.

It will be good to not have to worry each month how things are going to be paid.

I did walk the block to the post office and back today. This is good. And I did get a shower and get dressed.

I tried to read the printed word, but didn't last long.

I will be glad when I can read the great American Novel again.

I found out I can get credit for my AOL bill today if I take a survey once a week or so. This is good. This will help!

The church near me had a yard sale Friday and Saturday. They sold some of my things for me.

I needed $308 to move in to the apartments.
I received $208 from the yard sale and a friend brought a card over with $100 in it for Mothers Day.

The church is trying to get people to help me clean, pack, move and have another garage sale this weekend.

I am downsizing. My hope is that this will bring in enough to pay the utilities and some other bills.

Another lady is at the store right now picking me up so groceries.

This is all so humbling and amazing.

As far as my symptoms, my head seems to be a little more clearer.

I still feel like I need an oxygen mask when I try to move or sit for very long.

I am able to do a little, get back down and then do a little more.

It has been a long time since I have had a day when the breathing was not a problem.

Did you know we exhale more toxins out of our bodies through deep breathing than we do through the other end?

(I have been listening to my TriVita tapes.)

So, breath deep at least 5 times a day.

I do believe the hardest part of this is people not understanding.

I don't understand why my body is behaving this way and when it is going to stop or if it is going to stop.

It is odd, but what bothers me the most is that my mouth feels like cotton all the time and my lips are always dry and cracked.

They are fine is I don't move. But, with mobility...the shortness of breath...the dry, cotton mouth, chapped cracked lips come.

Yes. I am drinking lots of water. Yes. I will try to get more down me today. I usually drink 5 of the Danasi Bottles a day.

Thanks for the reply. I think I will be OK once the move is over and I am settled in.

I certainly will miss my car.

Like you, I haven't worked in over a year and a half.

I have stopped taking the Questron. I had forgotten all about it until you mentioned it.

My LLMD along with other docs wants me to see a pulmonologist because of the difficulty with breathing with mobility.

But, I no longer have insurance. Perhaps workmen's comp will provide one.

I too try to think of others and be greatful this is all that I am going through when things get tough.

But, I had forgotten that. I also try to count my blessings which have been a lot.

I thought I had a pretty good attitude until lately. I started taking an anti depressant and I wonder sometimes if it isn't depressing me.

When I first took it, I sleep around the clock and lost about 2 weeks of my life. I didn't care about anything.

The doc said to give it 6 weeks so I am trying to do that. She also said to cut back on the dosage and I did that.

Did you hear about the guy that had to cut off his arm in order to survive.

I was very thankful that day that I was just dealing with lyme and something else that hasn't been determined yet.

I think it is valley fever.

I read your entries and think of what a strong person you are....amazing.

I am so glad God is with you. Your church and its people are wonderful.

People can't cope with this...so, I try to give them a break.

Take Care,

Kent

How are you doing? Still working part time?
Still on treatment?

I am glad I am living by myself right now because I find I am less patient with people.

I do try to give them a break. But, I am amazed at all that I could do that I took for granite that others that are well can't do.

Since I have had to rely on others I have really noticed the different abilities with just household chores.

Amazing.

I will be so glad when this move is over.

My LLMD called and he wants me to see a pulmonologist because of the difficulty with breathing.

The garage sale the church had brought in just what I needed to move into the apartment.

Then they came over hear and sold some more of my things. This brought in what I needed to pay this month's utilities, and possibly the 3 out of town doctors visits that are coming up.

I also sold my car.

And the ladies who did the garage sale also packed up the kitchen, bathroom, bedroom, etc.

Moving day is Monday and Tuesday. Cleaning day possibly Wednesday.

I would have never thought I would have been able to do this. But, one lady has been instrumental in recruiting help and co ordinating everything. She has been great!

I am exhausted today...took a long nap.

I wonder if the diflucan helped me function better than normal. I am out of it now.

If this is valley fever too, that would explain why the diflucan helped.

I wasn't able to walk last night for awhile.

And I haven't done much today at all except lie down and eat a little at a time.

I can't seem to eat much in one sitting. Not sure why. If I am just took weak to chew or what.

I just fatigue so quickly. I didn't know eating took so much energy.

I haven't been able to do that in a year and a half.

I then went for a walk with others. Fell in the street and now have a skinned knee and elbow.

I got up this am to go to the bathroom and fell in between the bed, desk and bike. I sat there for a while waiting for my strength to return so I could get up.

I no longer have a back in my robe. It was torn during the fall. I think my back has a mark on it too.

I have been lying in bed all morning waiting for the strength to get out of bed.

Hunger is getting strong so I think I will be getting up soon. I am glad I had a bottle of water next to the bed.

Although I still am dehydrated even though I have been drinking it.

It was great to have an almost normal day yesterday.

I don't think I will be moving much today. I will be going over to the old place. I am not sure what I will be able to do to clean it. But, I have help.

I received a call from SSDI. I have been approved.

I have an appointment this coming week at their office.

It will not be much, but it is enough at this time.

I did a dance in my head because my body wasn't able when I received the news.

Then called and shared it with my parents of whom I have been borrowing money from to keep a roof over my head.

They were very glad to hear it as it has also made things financially rough on them.

Maybe you can take a deep breath and have all your energy at the ready for fighting Lyme and Valley Fever.

Ann-OH

I just got back from a church campout in the mountians.

It was great. I was able to go for a few short walks. I was able to see General Sherman's Tree in Grant Grove and walk a short distance around the campground.

I thought it was because I had stopped taking the drugs.

I had weeks of barely being able to feed myself and I was so weak, it had to be liquid...chewing was out.

So, out of desperation, I stopped taking the drugs to see if that would help.

I thought it did for a couple of days...but then on the way down the hill from the mountains, my body shut down on me again.

I have been laying here for several hours trying to get the strength I need to put on a pot of soup to heat up.

This is not good.

The good news is that I will be seeing my LLMD soon and the workmen's comp doc the end of the month.

I am still in the process of trying to find someone to drive me to the docs.

If I get stronger, I will take the train.

Change of subject...

I found out I am receiving SSI instead of SSDI.

It turns out this is could be better because I will have medical soon which includes drugs.

I was told if I didn't receive the card to call. I have called twice now and gotten the same story. "if you don't receive the card next week be sure and call us" It has been 3 weeks now. Hopefully, I will receive it next week.

I need to find a primary doc as my LLMD wants to only be a consulting doc due to the politics of lyme right now.

Change of subject...

I wonder if it is the heat that is causing me to be so weak?

It doesn't make sense because the house is air conditioned.

RE: Mountain TRip.....

Although it was nice to be out and about....I concluded that one needs to be very cautious as to who you go anywhere with at this time.

With me, multitasking can be too much...the curving mountian rodes, the radio or CD music, the road noise, the constant conversation in the vehicle, the eyes being bothered by the light and movement, the ringing in the ears, etc...the body is just not up to par and gets overloaded seeemly so easily...so bizarre.

Plus, It is just impossible for me to sit upright.

I would like to stop this journey now. I would glady give my cross to someone else to bare, but I know that is not how it works.

I know the story of the person who wanted to put down their cross and went into the room to pick up a new one and ended up picking up the same one because it was so much smaller than what others are carrying.

Change of subject:

I received a certified letter from the state of California letting me know that they were going to lay off 15 teachers at my place of employment.

My hope is that this will be determined to be work related and I will not be laid off at this time.

The other person who came down with the same symptoms at work continues to work part time because she is not able to work full time yet.

I goofed. I thought the workmen's comp doc was later.

LLMD said to continue detoxing along with a hot bath every other day with epsom salts.

And to continue building the system up with supplements.

Then I am to start the diflucan (I continue to believe that I contacted valley fever and lyme around the same time)

The diflucan is for valley fever too and it seems when ever I take an antifungal I become stronger.

Then I am to start shots 2 times a week to treat the lyme.

I need to look into a home health nurse.

I also had blood work to check my kidneys and some other testing.

I would need to look at the lab report. I can't recall off of the top of my head.

The doc should get results in 3-5 business days.

I still have not chosen a primary doc or made an appointment with the pulmonologist.

I plan on calling Monday to schedule an appointment.

LLMD said he has been off abx for 3 weeks now. That is encouraging.

I continue to be able to do a little, rest and then do a little more each day until I crash and have to wait it out.

My hair and fingernails are growing. It is unusual for me to have strong, long fingernails.

I am assuming it is the supplements.

Have not heard back from pharmacist regarding prescriptions yet.

A lady from church brought over groceries today, took my laundry home to do, and took a few things to put in storage at her house for me.

I am still trying to organize the new apartment and declutter. I am still not able to walk without stepping over and around things.

I continue to find it difficult to find things.

I will be glad when the place is organized and clean.

I signed the papers from work regarding lay offs.

I beleive I can not be laid off while workmen's comp is pending, but not sure.

Work is laying off 15 teachers.

One is going out on medical retirement in a month or so...the one that came down sick with the same symptoms I did at the same time.

Only she is doing better than I and is able to work part time at this point.

I heard from the pharmacy today. They are just waiting to hear from the doc to get his license number. It looks good as far as getting the prescription filled.

I also have been able to go swimming a couple of times. It was great. My body felt normal for a short amount of time.

It has been encouraging being off of the abx...more mobility each day.

It also may be because of less stress financially after being approved for SSI.

Still limited on what I can do each day, but usually able to do a little bit.

I am slowly able to get this place clean and organized...a first since I came down with this in Oct. 2001.

Looking into getting on a list or two for an assistant dog, getting a primary doc, getting home health care, getting an electric scooter or wheel chair, getting on a list for low income apartments near parents, paying debts in small payments, getting to a pulmonologist, getting another appointment with workmen's comp doc (still hoping that this will be connected to work some how since so many of us came down sick with similar symptoms the same time), and of course...still fighting the good fight to have my health return.

I seem to have about a couple of hours each day of productivity if I pace myself...work a little, lie down..work a little more...lie down.

I have charged some things to help...a comfort chair so I can sit up more. I can take it with me to the docs, etc so I do not have to lie down in the offices...also charged a laptop table I can use while lying down in bed...still trying to figure out how to get those last two screws in, and I broke down a charged a TV...I guess this means my imaginary friends will be put on the back burning now. HA!

Found out...no food stamps while on SSI. This means I have about $60 for food each month. I hope to increase my customers with TriVita so I can supplement my income and continue to afford the supplements for myself.

I have had more help with getting things organized and clean around here than I had the last 18 months at the old place. This is good.

This also cuts down on the stress.

Planted cacti after loosing other plants to the heat and not being able to water them.

It was the most fun I have had in a long time besides being able to make it to the pool and doing a few laps and being able to make it back.

Also have been able to walk to grocery store twice in the past 2 months...store is very close. Used electric scooter while at store. Sure wish I could bring it home with me...but not sure how to get it back yet.

And rode my bike twice in the past 2 months to the post office....also not far.

Hope to be able to do these things more often in the near future...but the heat shuts my body down.

I feel I improve with supplements. I have noticed this in the past when I have had the opportunity to take them...especially the vitamins and the sublingual B12.

Have had bloating return. I didn't have that while on abx but bloating seems to be related to activity...now activity while on abx.

Still trying to write lyme story for Faces of Lyme and other newsletters.

Still trying to figure out when I was first lymed...difficult to know which symptoms are lyme related or possibly something else.

This will be the 4th time I have taken an antifungal in the last 21 months. We shall see.

Now, I don't know if it is the diflucan that makes me stronger or if it is because I have been down and not moving.

We'll see how I do off of it.

I am still waiting to get in to see the primary doc...

...to get the bicillin (I have lost track how long I have been waiting...I think the prescription went in on the 23rd of June)

...waiting for home health care

...waiting for a nurse to administer the bicillin

...waiting for a note from my doc for the nurse and for work

...waiting for the workmen's comp doctors appointment

...waiting for SSI to get back to me to let me know what I owe the attorney

...waiting for IRS to send me the forms to make payments on taxes owed

...waiting for the attorney to get the workmen's comp papers to Samsun Clinic

Samsun Clinic called and they want half my income in order to make payments for the bill owed to them.

...waiting to be able to do routine chores around the house and to take a shower

...waiting for the old insurance company to pay $2,000 of the Samsun Clinic bill that they are disputing (Since this took place in April, I don't it is going to be paid)

...waiting to finish getting unpacked

...waiting for the weather to get cooler (it seems this heat really shuts my body down)

...waiting to have Myasthenia Gravis ruled out or confirmed (EMG is in October now)

...waiting to have valley fever ruled out or confirmed (Since this started with a long list of possibilities it is down to two or three now...heavy metal poisoning is part of the picture but not sure what to do about it since spending more money on supplements is out at this time.)

..waiting to be able to make myself some age defying pancakes and some other things I would like to bake or cook.

..waiting to be able to take a shower and get dressed without being totally exhausted and having shortness of breath.

Yes. I did finally get the bicillin.

I put in a call to my LLMD to see how to administer it.

I am still waiting to see what to do.

When I talked to him at the appointment, he said to see about a home health nurse.

When I called the insurance company they said they needed a note from the doc.

I saw the local primary doc and hoped he would administer it.

He refused.

I had contacted Congressman Dooley's office and they forwarded my message to the assemblyman.

The person that called me knows the head of the medical center locally and is going to contact him.

The plan is to get treated for lyme. I have the bicillin. I just need to administer it or have someone administer it.

My LLMD is 4 or so hours away.

We'll see how it goes. He said it would probably be the end of next week before I hear back from him.

He seemed to know about lyme and said all the doctor needs to do is contact Conn Medical Center for help.

It would just take one phone call and didn't understand why the doc didn't do this.

I am assuming it is because the budget was passed for the state.

They are sending me a form to fill out, send to my doc and then back to them.

This is positive and encouraging.

I also heard from work and they received the note from my LLMD.

And my LLMD called. Hopefully, he is sending me the doctors note for the electric scooter, the Student Loan Disability Form(they have losted the ones I sent them and now are charging me interest big time), and applications for an assistant dog.

The local PCP are not willing to help. I am assuming it is because they want to go with CFS instead of lyme although a rheumotologist ruled out CFS/Fibromalgia.

It is difficult to beleive that I have yet to find a good PCP since Oct. 2001.

It looks like I will need to go out of the area...which means I will need to find someone to drive me the hour or so for a PCP.

This condition is difficult enough in itself without having to fight the medical field.

The local PCP said for all he knows IGENEX is a bogus lab on the grounds that he had never heard of it.

I asked him to call or check out their web site and judge for himself. He said anyone could create a web site.

The whole meeting went like this...nothing but obstacles and looking for ways to discredit me as a patient by the doc any time I directed the conversation towards trying to get my health back.

We were not on the same page.

I received a call from the assemblyman's office. They had called the CEO of the local medical center and they referred me to a doc.

I told them I had seen this doc when I first came down with this and on my second visit, he dx me with fibro, gave me a sheet of paper that said to learn to live with it, there was nothing that could be done about it and don't try to collect disability.

When I told the doc I didn't have the symptoms that were listed, he told me I had the fatigue didn't I and walked out of the office.

A nurse then came back in and said the doctor said not to come back for another 3 months or so.

I later saw a rheumotologist who confirmed I did not have fibromalgia, but didn't have a clue as to what I had and asked me to let him know when I find out.

Staying positive with the medical field being so negative is very challenging and difficult to understand.

Still waiting to hear from work regarding income for the past year in order to set the record straight for SSI and start the payments for the attorney.

Still waiting to get the workmen's comp doctors appointment.

And many of the other things I listed above.

I called pharmacy and they replaced the bicillin they gave me ....this time in the original box so I would have the directions.

Now, I am trying to get it together enough to get to the neighbors in order to have her give me the shots...it is probably less than 7 steps to my neighbors...but movement and processing is not on line yet.

It is the old waiting game again before I can eat and dress...in the past, I have waited until about 2 or 3 pm and then been able to dress and function enough for the basics.

She then showed up at my house later that day and said something to me as she was leaving with her grand daughter.

I was out of it and missed the message.

I went to her door several times later and received no answer.

I guess she was trying to tell me she would be gone for awhile.

In the meantime, I received the paper work for a home health nurse.

I called my doc and left a message regarding where to fax the paper work to him.

It has been a week and he still has not responded.

He also has not sent me a doctors note so I can get a closer parking space here at the apartments or so I can get an electric scooter in order to get around.

I am discouraged. Not only because I have had little to no mobility for a week but because it is taking so long to get results.

It is difficult enough dealing with this condition.

I tried the third prescription for antidepressants and once again, they seemed to make me worse.

I slept through the night for the first time in a week last night. I am hoping they are out of my system now and things will improve.

I received appointment letters for the local infectious disease doc( an hour or so away) and the pulmonary specialist.

The infectious disease doc appointment is a month away. The pulmonary appointment is in Jan. of next year.

The appointment for testing for MG is in Oct I believe and then who knows when I will get the results.

I still have not heard regarding the appointment for rescheduling the workmens' comp doc.

Neither has the attorney provided the workmen comp papers to Samsun Clinic.

My LLMD wants to be a consulting doc only, but he is the only doc I have at this time that is helping.

The local primary doc said he would not not help but would refer me to the two specialist above.

I know God has provided encouragement and hope all along.

I will be so glad when I am out of this slump I am in right now.

The ability to have mobility followed by days of inmobility really gets to me sometimes.

Most of the time I do OK.

I think it is because of lack of sleep that it is hitting me harder this time.

I tried to check to see when I was feeling this way last...it looks like the middle of June or was that July.

Either way...not good. Too long between this waxing and waning stuff.

The past two days I have been able to get out of the house for short periods of time.

I am so thankful for the electric scooter in the grocery store and at K-Mart.

I am trying to figure this waxing and waning thing out.

Am I waxing when I am able to get out and about for short periods of time?

And it is waning that happens when I run out of gas while I am out and about and have to beeline home and stay down for several hours before I get up again?

I tried to ride my bike to the local coffee shopt this am. It turned out not to be a good idea.

I wasn't as well as I thought. Good thing the coffee shop has a place I can lie down and regroup before I head home.

It is probably a 5 minute ride to the coffee shop or less.

I still have not started the bicillin...LLMD's office is closed until the 9th...form from home health care needs to be in on the 9th...neighbor has not been home so she can't teach me how to give it to myself...local doc refuses.

I see LLMD soon so I will deal with it then.

Sure hope home health care extends my deadline.

I have been able to keep up with the dishes lately.

A friend made soup for me so I have been eating it for a couple of weeks now.

This has allowed me to use the energy I would use to fix something to eat for dishes.

This almost brought tears to my eyes.

Now, I just need to find someone positive to help out.

It seems I have zero tolerance for negativity right now.

The other person that came down sick the same time I did called to tell me a local man died. When they did the autopsy, they found out it was for valley fever. He was not being treated for valley fever.

Once again, I would like to be confident that I am not fighting valley fever here too since so many of us at work came down sick at the same time with the same symptoms.

Only one was dx with valley fever...three were hospitalized with pneumonia which is a valley fever symptom.

I had an appointment with the infectious disease doc.

I asked him to show me how to give myself the bicillin shots.

HE refused. Said people have heart problems that were treated with abx for lyme.

Said there isn't any lyme in this area.

Said there are false positives on lyme tests.

Said, I most likely have CFS and that all he could do was give me sympathy.

He made copies of the large stack of medical tests I have already had.

Said he wanted to do his own testing...so I had blood work for cocci, lyme and a general panel again.

When friend asked why I have the low temps, he said it could be thyroid problems.

My temp was 96 when I was at his office.

Bottom line...I guess it is time to give the bicillin shots to myself some how some way.

But, first I want to make sure I have food in the house in case I start the herxing so bad again that I am not able to do much at all.

The good news is that it is cooler here today. And that I got to get out for a couple of days.

A friend came and took me to the mountains.

But, the body and mind are not doing very well now. I hope to recharge...regroup, etc.

I have doctors appointment with ID to get test results and to see what his plan of attack is Monday.

Sure hope person who said she would take me to docs an hour or so away follows through.

Sure miss being independent.

Also have appointment at UCSF Medical Center Thursday. Not sure how or if I am going to be able to make that one.

Will call number today to see about obtaining an electric scooter again.

Parents sent money for food. I have all ready spent it. It has been great to eat well this week. $100 does not go far around here. I just purchased chicken, fresh veggies and soy milk.

Samsun Clinic sent a letter telling me they were sending my account to collections. I have been paying $25 a month on it.

Need to call them this week to see if they will not send me to collections. Not sure what that means credit wise..but it can't be good.

He told me test results were fine for cocci, lyme and CBC.

I wasn't expecting much from him. So, wasn't too disappointed that he didn't have a clue as to what to do about my condition.

He did give me a note for an electric scooter. Now, I just need to get the paper work going for MediCAl.

He said to be careful because their were a lot of quacks out there saying they could treat my condition.

I also asked him for a prescription for a cruise to Alaska too.

He said he would if it would cure me!

AFter I left, I thought I should have asked him for a prescription for a Harley instead of an electric scooter. Smile.

Talked to Hoover Round. She said that they need to doc to fill out more papers in order to the get the scooter and depending on what the doc writes depend on if the insurance will approve.

Since, the doc doesn't have a clue as to how this is to live with...I don't think he is the one to have fill out the papers.

I was told the test is frequently done wrong so they wanted to do their own.

Myasthenia Gravis Foundation and others with MG say like lyme...test results can be negative and you can still have MG.

The best test is the tensilon test or to take the drugs to see if they help.

I am not ready to be a lab rat at this point.

UCSF's EMG was also OK.

A fellow teacher paid for the train ticket and the hotel. I had a rough day getting there, but did better on the way back.

It felt good to be out and about. All I needed to do was recline on the train. I can do that.

I interviewed a couple of people for in home health care. One of them will start Monday.

I also am going to give myself the bicillin shot while she is here in case I have any problems.

I sure hope the shots help. I have heard good reports from others regarding bicillin.

I told SF neuro the local docs refused to treat me for lyme or give me the shot.

She said just to use a mirror and make sure I don't hit a blood vessel.

I wonder what I am suppose to do if I hit a blood vessel?

I was able to walk the short distance to church today..sit up a little at church...stand a little, lie down a little and then walk home.

I will most likely need to be in the reclining position the rest of the day..but that is OK.

I tried to give myself the shot, but found I didn't have the right tools.

I called the pharmacy, they referred me to my local doc, I talked to the head nurse, she would not administer the shot unless the local doc approved, he already has said no, I called the hospital's head nurse and left a message. She is out and will be back tomorrow.

A doc there agreed to have his LVN show me how to give myself the bicillin shots.

Neither one of us have that nursing skill. HA!

I feel it must be making a difference to have in home health care a couple hours a day for 4 days a week.

I like having the 3 days off because it is exhausting having someone in the house.

I try to do what I can when she is here so we can get some of the paper work etc that needs to be done for my health.

And I have noticed that I don't have to wait until 2 or 3 to eat on those days that I am not able to get up and fix myself something because she is here to do that.

Eating regularly and nutritionally has got to be of a benefit to ones health.

I am so thankful my LLMD filled out the paper work for an in home health provider.

I was not able to move for at least 3 days. I was able to do a little today. I tried to go out to eat with a friend, but wasn't strong enough to last the whole meal.

It was good to get out though.

I don't know how long I have been on the bicillin shots now. I think I have had about 8 of them.

The doc gave me some suggestions of supplements to take to help with becoming physically fatigued so quickly.

I have misplaced the list and hope to find it soon.

He also wants me to complete some lab work and send it to MDL. The local lab refused to draw the blood stating liability.

Another obstacle. I am heading down south day after tomorrow. I am hoping a lab down there will do the work.

I have been waking up too hot to sleep lately and am very warm right now. I know if I wait it out, my body will go back to normal.

I am still housebound for the most part. It has been 2 years now.

Especially since the teacher who came down sick 2 weeks before I did is now being dx with CFS instead of valley fever as the local docs want to dx me.

She too has not been able to return to work for 2 years full time.

It will take God Almighty to help out here.

I did OK on the Amtrak Train/Bus as I was able to get two seats or the back seat of the bus so I could lie down off and on.

I did notice that the I really have a problem when I get too fatigued. Even lying down doesn't help. The noise, movement, etc...just gets to be too much.

I also have missed my bicillin shot and am waiting until I get strong enough to give it to myself or someone drops over to help me give it to myself.

I don't have much patient right now so I would really rather not deal with calling someone up at this point.

I know I will have a better attitude after I am able to recharge my batteries so to speak.

I didn't even call the in home health care provider to tell her I was back. I need to find someone else as I find myself not looking forward to her arrival.

It has been one year now since I received the test results from Igenex that showed I had lyme disease.

I have taken about 3 months of orals...I think and approximately 10 or 12 bicillin shots.

I take the supplements when I have the funds.

I am still trying to find a way to bring in more income.

I also am still very limited on what I can do each day.

I made a chart to help me follow through on the garlic, parsley, bicillin, green drink, exercise, questran, hot baths with epsom salts, etc.

I think about not taking the meds at times, because I think I was doing better without them....but then decide to continue on the meds.

The main goal continues to be to have my health return and I am functioning so low without the meds that it is not OK with me.

So, I continue with the bicillin shots in hopes that in the long run I will be functioning better.

I think my legs are working better than they were with the shots, but not sure.

I wake up in the middle of the night too hot to sleep. I started taking the thyroid meds lately.

Really dislike drugs, but not sure what else to do at this point with the resources that I have.

Continue to be very thankful for my lyme doc and the support of others with lyme disease.

It is the support of others that help me to continue on the bicillin shots as they report that they feel it is the bicillin shots that helped them get their lives back.

Went on a test drive for Rascal Scooters. They wanted $1500 down and $175 a month for 3 years.

This is not a possibility.

I feel that even if I had the funds to do something like this that I would shop around. This just seems wrong. How can a scooter cost that much.

The thought of being able to get out and about was a strong selling point for me until they told me the cost of doing this.

Still looking for a doc who accepts my insurance and will work with my lyme doc or at least has the same goal I have....get me back on my feet and back to work.

It will be interesting to see where I am 6 months from now. I have begun to learn that this is going to take time and that there are not overnight quick fixes unless it comes from above.

I have given up on putting the book together until I am in better shape.

But, sleep has been irregular. Not sure if it is due to thyroid meds. Have yet to check for side effects of meds.

I am still functioning very low.

I have an appointment with a new primary doc out of town today. My hope is that he will work with my lyme doc and have the same goal I have: to get me back on my feet.

I had the lab work done for the CFS panel and bartonella yesterday after trying for over a month to complete this.

Hope to hear from doc soon regarding lab work with MDL and Unilab.

Am making payments to UCSF MEdical center for work done last year when I had Blue Cross.

Also making payments to Samsun Clinic for work done last year with Blue Cross. (Samsun has sent me to collections...the small amount I was paying was not enough in comparison to what I owed)

Blue Cross still refusing to pay a couple of bills from last year.

I have been going in debt each month in order to keep food in the house due to money going towards installment payments. Not good. Trying to find a better way.

I have approximately 15 bicillin shots left.

Have sent email to organization in hopes of getting on the list for a service dog.

Still need a wheel chair or electric power chair or scooter to get around. If it is a wheel chair, need someone to push it for me as arms become weak quickly.

It will be great to be able to get out and about more. I just need to purchase a battery. I am not sure where to get one at this point. I did check the web, but I am sure shipping for something that heavy would be costly.

A friend is going to take me to pick up the chair and another friend is going to help with the cost of the battery. This is good.

I am glad I have this log. I checked back to see how long I have been on the bicillin. It has only been 2 and a half months. I think I have about another 6 weeks to go before I am out of shots.

Last week was a good week because I was able to get out and about a little. This week has been a rough week so far because I have little to no mobility.

IT is times like this that a power chair will help. I think if I had one, I could at least empty the dishwasher and do the dishes or just go for a spin around the block.

I can't get to the kitchen sink right now because it is full of dirty dishes. And when I try to get something out of the fridge to eat, it usually ends up on the floor.

I saw him because I have had several docs including my lyme doc tell me I needed to see a pulmonologist because of my shortness of breath with mobility.

I am all ready into my checking overdraft again this month. I have enough to borrow to see him this time, but what about next time?

Finances are getting me down. I wonder what the odds are of me getting well without being able to take supplements and the other non prescribed alternative therapies.

I am also discouraged that I don't seem to be getting any better.

I know I will feel better just from talking or seeing my Lyme Doc. I feel like there is hope after seeing him.

But, I also feel trapped at times in my body and mind.

I would like to find something productive that I could do to supplement my income in order to take the stress off of things and to just plain be able to do something constructive that doesn't totally exhaust me.

This too shall pass.

This time last year, I didn't even know how I was going to pay rent, purchase food, pay utiities, etc.

Now, I have SSI as an income, a power chair that really has been a blessing, a dx, and a low income apartment to live in.

I am not sure what the problem is, but I do feel sad and discouraged.

Hang on in there you are a real fighter, I really do hope you get some more help with your finances.

I have hope again. I was very low functioning while there so I hope I have things covered.

I recall that I have my checks covered. I am too have a shot of bicillin twice a week in the right check and a shot of rocephin in the left check...I think that was twice a week too.

I also am to have a shot in the arm of B12. I think that was once a week, but I will double check.

I double checked and it says to see package insert of which there is none. Hmm.

I also have Tequin to take twice a day.

And a prescription for something else that I can't read at this time.

Just about everything came back positive on the CFS panel from MDL labs.

I need to contact the bee lady to see what it is going to cost to get a few things from her.

I listened to Dr. B's audio on the way up and found it very helpful.

I had two Starbuck Frap's and 4 excedrin to help me get through the day. I also reclined the passenger seat.

And we stopped at the Jelly Bean factory and took a tour on our travels.

I was really low functioning so not much was going in. I laid down on the floor at one of the stops because my batteries were running really low.

A kid got yelled at by his parents for doing the same at the next stop so I decided I would just concentrate on holding myself up and forget about trying to take in what the tour guide was saying.

I had forgotten how kids like to mimic others and it reminded me of my teaching days.

I'd like to go back when I am doing better and take the tour again. The smell alone is worth the tour.

All in all. It was a good day and everything went smoothly. My guess is it will take a couple of days to recover. And that I will be up most of the night due to all the caffeine.

I am so thankful my LLMD does not wear a white coat. And that I look forward to seeing him. And that we both have the same goal....to get me well and back on my feet.

I heard in Dr. B's audio that there is one lyme doctor to every 10,000 people with lyme. (Most have not been dx yet)

ON the other hand...lyme doctors are one in 10,000 in the medical world as far as I am concerned.

It is the strangest thing. It is almost like a break from the lyme. I have something that is familar. Unlike the lyme, I know this will go away.

I stopped all meds for now. I was sick to my stomach and had enough of the pressure in my head for lack of a better way to describe it.

Once again my Dad has put doubt in my mind as to whether or not the doc I am seeing is really helping me or not.

Then, the other teacher came over who came down sick the same time I did with the same symptoms. She is doing so much better than I at this point. That also put doubt in my mind.

She continues to complain of the stiff neck and some other things. I continue to tell her she needs to see a lyme doc.

But, then she is functioning so much better than I am. I am not very good advertisement for being treated for lyme disease as a way to get ones health back.

I also am still trying to get the syringes and needles for the B12 and rocephin. The in home health care person dropped the prescriptions off at the pharmacy that all ready told me they couldn't help.

I sure hope they don't throw the prescriptions away like last time.

I had told her to try another pharmacy in town and she went to the old one instead out of habit.

I also had strawberries and whipped cream and wheat thins.

The local pharmacy said they couldn't fill the order. They referred me to a pharmacy an hour away.

That pharmacy said they didn't have exactly what the doc ordered but could substitute 3cc instead of a 10cc and that the price would be $100 because my insurance would not pay for it.

Today, I was having my annual physical (about 3 years late) and the NP called the pharmacy across the street.

Viola. They filled the order for syringes and needles and the insurance picked up the bill.

The past two days have been better than usually mobility wise. I was out and about in my power chair from 9 am to 3 pm with a lay down break in between there yesterday and took a 15 min walk at sunset after reclining for 3 hours.

Today, wasn't bad either. Not as good as yesterday, but I was out and about some.

I laid down in the dentist chair which helped to recharge my batteries. Other than that, I was upright or in a recliner like position from 9 am to 5 pm. I did lay down for a while at the doctor's office while waiting..but it was in the room and on a table.

In the past, I have had to lie down in the office while waiting to see the doc.

I like having days where I can sit up for the most part.

I didn't realize that this may be the reason I am having such a rough time of it lately.

But, this certainly wouldn't be the cause of the head stuff.

I stopped all meds yesterday afternoon. I have had my limit on this head stuff and am hoping by taking a break I will feel better or at least be able to continue with the meds.

I also will be starting the rocephin when she returns next week. So, I thought I would try to flash my body out.

I took a hot bath with epsom salts this am. I am drinking some detox tea I found at the local drug store and lots of water.

I am not sure if I want to take an excedrin today or not to help with the pressure in the head. Sometimes it helps and sometimes it doesn't.

I am feeling very discouraged. Just going to the drug store to pick up the tea was too much today. I also tried to purchase some veggies to plant and the epsom salts.

I was in my "dune buggy". It is so frustrating to be at this since Oct. 2001 and not see any progress and at times feel as if I am worse instead of better.

Especially when the other lady who came down sick at the same time with the same symptoms at work is doing so much better than I am.

Am I on the right track? I do believe lyme is part of this..but...??

I still don't understand how one can be working full time at work and at home one day and then be so low functioning for so long.

I still don't understand why I don't have my health back or what to do about it to get it back with the resources that I have.

I wrote a check on my checking overdraft in order to get the tea, epsom salts and 3 small plants today...not good.

I also am discouraged because I thought I would have thought of a way to bring in more income by now that I would be able to do during my higher functioning days.

Mostly, I just need the pressure in my head to go away and the high pitch sound in my ears.

I also notice that I have the twitching again in random parts of my body. I don't know if I notice it more because I am on my back more because the twitching is going on.

It is so strange to have parts of your body move under the skin at random.

If I look at the big picture, I still have a lot to be thankful for. I have a good LLMD who has helped me to get in home health care, SSI, and most importantly is trying to help me get my health back.

I have a power chair now. I have a roof over my head and it is quiet for the most part here.

I have been able to read now and then. I am on my 4th novel by Neveda Barr. I still have problems with focusing, recall, double vision, etc...but...I wonder if that is why my brain is aching lately??

I really dislike not being able to get out and about or having to rely on other people to take me to doctor's appointment's etc.

I would just like to get a trailer and travel.

Of course, just going away for the weekend would probably be enough for me right now and take me several days to recover. HA!

This too shall pass.

Maybe I will go for a cruise in my dune buggy and not try to do anything but sit there and enjoy being out.

---------------------------------------------

That helped. I did OK for about 20 minutes and then had to turn back. But, it was good to be out.

It had taken several attempts to get the needles and injectors that my LLMD had wrote a prescription for back in FEb.

My in home health care person and I tried to recall what how we were supposed to administer the rocephin and B12 shots yesterday.

We didn't feel comfortable giving it a try until we had a doctor show us again.

So, I went back on the bicillin, and two other meds the LLMD prescribed.

I ached all over and was a couch potato again yesterday after the shots and only one pill each of the orals.

I couldn't sleep again last night until about 4 am.

I have the pain in my eye again and the rubberband like headache.

I don't like it. I liked being able to function like I did for a few days while off the meds even if it was low functioning.

I have noticed that since I have been on the meds, I am lower functioning.

This is such a difficult condition to figure out.

I have doublts I am on the right track again.

I am going to take 2 excedrin and not take any meds today. I also am hoping to get well enough to get to the store to purchase some more epsom salts and take a hot bath.

I made an appointment with my LLMD in May. And I have placed a call to a NP that my LLMD told me about that is only an hour and a half a way who will work with him.

I also have lost my taste for food again. It was great all last week to enjoy the taste of food again while off the meds.

The head nurse showed her how to administer the rocephin, bicillin and B12 shots.

She also gave us a box of bandaids, antiseptic wipes, some syringes and needles, and a bottle of the stuff to mix the rocephin in.

The help from this office is like night and day compared to the help from the office in my home town.

I have both the head nurse and the doctor a copy of ILADS guidelines. And I loaned my DVD and audio of Dr. B's presentation to the head nurse. She seems willing to learn about lyme.

I was able to sit up in the waiting room and do a little work while I waited just like I use to do before lyme.

It was great. But, I was fading fast towards the end of the visit. The sound of the fan in the room was too much, I couldn't process what she was saying and my body was really functioning low. That invisiable, fully loaded, semi truck ran me over again while I was in the waiting room.

I have had better than usual past 3 days. I was on my feet walking around town one of thsoe days for an hour. I also was able to attend a Bible Study one of those days. And I have been able to get the dishes in the dishwasher. I still need to empty the dishwasher and get the rest of the dishes clean. If I take it slow and do a little at a time, rest and then do some more, I am able to get the job done.

Still can't figure out what the cycle is with this and why I am able to do these things sometimes and then go days when I am nto able to.

I also was able to make some whole wheat biscuits one evening if I did it in steps, rested and then did some more.

So, the multi tasking is better.

And I started reading the Purpose Driven Life. My hope is that I will be able to read a chapter a day. We shall see. I have been able to read in the past and then wasn't able to again. I hope it sticks with me this time.

And I have been doing little short jogs. So, the connection between the brain and the legs is working much better.

I believe I am seeing improvement.

The difficulty with sleeping at night is still an obstacle. This seemed to start the first of the year.

I have not been able to sleep until sunrise the past two nights. And then for only a few hours. I did fall asleep on the couch tonight from about 8 pm to midnight, but then work up and haven't been able to get back to sleep.

All in all there has been more mobility the past 3 days. It is the 2 months that it took for me to problem solve and get the rocephin in me that mindboggles the mind. It doesn't make sense that I am functioning that low and it takes that long to get the job done.

It also doesn't make sense that the in home health care nurse isn't doing much better than I am in this department...she is just able to do the cleaning and cooking better than I can at this time.

I also received a bill from the local hospital of $700 for the blood work they drew for MDL lab. I am not sure why and will try to trouble shoot that tomorrow.

Was told again that the system is showing I have HealthNet again which is wrong. I haven't had Healthnet insurance for over a year. I need to trouble shoot that one too because medical bills are not being paid by MediCal due to this.

It is nice to have the head clear enough and the body strong enough to deal with these matters.

The local pharmacy delivered epsom salts to me today. Someone had prepaid for them. This was a nice surprise.

Started the sweats a little at night again.

Still difficulty focusing and staying on track.

Still have the chapped lips and dehydration with movement such as todays.

Perhaps it is the shortness of breath with mobility and breathing from my mouth instead of the nose??

Got the paper work signed for PG&E by doctor so I can get the discount on the air conditioning. Temperature still has a big affect on me and heat still shuts me down.

Growing garlic and parsley in pots on the patio. Lost one pot of parsley. Hope the other hangs in there. I try to eat a little parsly each day as recommended. I haven't been doing the garlic and need to give it a try again. Last time, I just couldn't get it down.

Also started free samples of colostrum. I think it is helping, but this thing cycles so time will tell.

Because brain and body is functioning better, I am able to make sure I get enough acidopholus down me too.

I am keeping a chart to record when I take the acidopholus to help me remember that I have or haven't taken it.

Blistered my feet a few days ago, because I didn't feel the heat of the sidewalk burning them. It takes so much to get my shoes on that I usually leave them off. Guess I better get in the habit of putting them on to be on the safe side now that the weather is getting hotter.

Local church also gave me a check which helped with food for the rest of this month and transportation costs to doctor. This is good.

Stopped by workforce to see if there was anything that I could do job wise at this time. I was pretty low functioning so couldn't stay long. Hope to go back and also check with school district.

I really need to just see if I can make it to the once a week Bible Study and church routinely first. But, my mind wants to be productive when I have a few good days.

The reality is that I am doing good if I can get to the grocery store and fix myself 3 meals and take a bath every other day.

I am not doing this right now. Sometimes yes. Most of the time no.

See LLMD in about 2 or 3 weeks I believe if I have the funds. I think I will be OK for May. REnt is being lowered by $60 then. I need to look at the budget and see where I stand again.