Lyme Disease is NOT for sissies

[AnnieB]

Sorry to hear that this is being such a bugger. Hoping you start feeling better real soon. 

Anne

[natnnnat]

Hi WillowTreeWrenWinter
I just read your post in another thread http://ihatedialysis.com/forum/index.php?topic=15510.msg439818#msg439818

What I left out of the previous post is how Lyme has affected my life and the cost it has put upon the health care system:

Before April 1, I was a healthy, active adult, working full time and running two businesses. I am now home-bound, barely able to walk, at stage 3 kidney failure, signs of heart disease and possible COPD (all because of the Lyme disease that insurance doesn't want my doctors, or any doctors, to treat). I was hospitalized with chest pains last week after trying to spend a day at work. I only made it until 10:30 before collapsing and being taken to the ER.

If my business fails because I cannot be there to run it, all my employees will lose their jobs.

How's that for penny wise and pound foolish? Insurance will pay for the treatments against the kidney failure, heart disease and COPD, but not the infection that is causing them!

This is a nice summary of a shocking state of affairs.  I'm glad you are still kicking the butt of things, keep that up!!  Evidently SuperBetter is standing you in good stead.  On the other hand, this is totally 

[willowtreewren]

Yes, I'm 5 days into my second round of Rocephin. If I thought is kicked my butt last time, I was way off base.

This stuff is VERY strong, especially now that I'm on twice the strength as what I got last go 'round. I convinced my neurologist that if 1 gram/day didn't knock the buggers out, then we should try at least 2grams/day. LOL. It has really knocked me out.

I have to rest after eating, rest after getting dressed and rest after a 5 minute conversation! We started out going to the hospital each day for the treatment, but after three days of that I knew I couldn't keep it up. I was so exhausted after each trip I nearly collapsed. So I'm back to home treatments!

I DO feel a wee bit better today. I'm less light sensitive (I was so cool wearing dark glasses inside!  ), I can more a bit faster (shuffle + speed instead of shuffle -)

But the worst news is that no matter how successful this round of treatment is, insurance has all doctors' hands tied and this will end my treatment.

Not to worry. I'm a 

There are 6 states that have passed laws making it illegal to limit treatment of Lyme. My daughter lives in one. Ironically, that is where I caught it! If necessary we will pull up stakes and move there sooner rather than later. Or I might move there for treatment.

Or we might sue the insurance carrier (if tests show after this treatment that I still have living Lyme in my system). I will NOT give up.

Aleta

[boswife]

Keep at it Aleta!  geesh, im so sorry for it all!  what a horrable horrable thing all the way around...   

[cassandra]

Stay strong, and keep fighting girl 

and lots of love Cas

[willowtreewren]

Time for an update:

I am slowly regaining strength now that I am into my second week of treatment. Home health left a little while ago and they brought a full 7 more doses of antibiotics when it was supposed to be only four! You can bet your bottom dollar that I will go ahead and use those doses. I am NOT going to complain that the pharmacy screwed up. No Way!!

On another front, I finally got the lab results back from California, the ones I paid $1300 to have done. They DO show Lyme disease. On the down side, the results do not meet CDC protocols. No matter. I'm having a spinal tap tomorrow that will also show that I have Lyme.

I'll be able to take these results to whatever Lyme doctor will see me.

In preparation for my spinal tap (LP) I had to cease taking Naproxen. So, the headaches are an issue now. I needed to do that experiment anyway. I'm glad that there was a reason to have the headaches and not just because I was trying to see if I would still have symptoms without the pain meds.

I do have to confess that I am feeling apprehension over not knowing what hoops I will have to jump through or how long I will have to wait to see a Lyme doctor in another state. I've started the process. I do so want my life back....

I got a bundle of get-well cards from my students yesterday. That was so sweet. One of the moms at school is taking me to the hospital tomorrow. Her son washed the car so I would have a "clean ride." That caring gesture made me cry.

Well, that's the news from Lake Woe-be-gone as in "woe, get out of my life!" 

Aleta

[amanda100wilson]

I am surprised that they let you take naproxen, given that it is a NSAID.  maybe it's because you are already ESRD and the horse has already bolted on the preserving the kidneys front.

[willowtreewren]

Amanda, I am limited on what I can take for the debilitating pain.

BUT I HAVE MORE NEWS!!!!!!!

Yesterday, I emailed a Lyme Guru in New York State to see how long their waiting list is. They called me back today. And they will see me on MONDAY!!!!

As I knew, it is VERY important not to keep starting and stopping treatment, because it kills off the weak spirochetes and lets the strong ones reproduce.
So they wanted to get me in before I finish this round of Rocephin. My airline ticket was only (gasp) $1100!

My first visit will be $640 and I will have to go for bi-weekly follow-ups at $175 each until I'm OVER this!!!!

But I have been crying all afternoon saying "I am going to get Well!!" I did not realize how upset I had been about this whole thing until I could see the light at the end of the tunnel.

Aleta

[MaryD]

 

Go girl!

[MaryJoe]

   Spectacular news!  I'm so glad you will be able to see the Lyme specialist before this round of antibiotics is finished.

Keep fighting!    

[boswife]

Great news!!!  there is a ............................. light at the end of it all isnt there    Sending my best and will be soooooooo happy to hear of success!!

[MooseMom]

Oh Aleta, that's just wonderful.  What a relief!  I can't wait to hear your report on your appointment on Monday.  I can't think of a better way to spend your money.  I know it is a lot, but if it leads to you getting your life back, it will be worth every penny.

I am so hoping that the light at the end of the tunnel continues to shine brightly.  I know this has been a terrible ordeal for you.  I hope it will end soon.

[amanda100wilson]

great news, Aleta

[willowtreewren]

Thank you, thank you, everyone.

My Lumbar Puncture (spinal tap) went without a hitch today. I had upped my consumption of coffee over the past few days to increase the production of spinal fluid. I have a headache, but HEY! I had a headache before the LP!

 

I take an active role in maintaining a positive outlook, and I can honestly say that I have been mostly successful during this battle with Lyme.

But then today I realized that I am feeling not just positive, but actually HAPPY! 

I had been missing that. It is the difference that real hope makes.

I WILL update after I see my Lyme guru on Monday. I am just so thankful that my dear daughter went around asking all her friends who had been treated for Lyme who they saw.

Aleta

[smcd23]

I am patiently waiting for your update!

Also, if you don't like this Lyme guru - Mass General in Boston has one also (that's who we want my SIL to go see since he's only 45 min away)

I am sure you're exhausted but I am going to keep checking back. My SIL isn't improving too much but I liked those links you sent me, and I also like hearing your updates, so I have ideas to pitch **evil laughter**

[willowtreewren]

It has been a while, so I need to give you an up-date! 

The trip to New York went well. I was with the doc for almost 2 hours going over previous treatments and symptoms. He did everything but stand on his head trying to find a way to prescribe an extension of my treatment so I could do it at home and not have to move to New York! He even waited while I called Carl who had to drive home from work to look at the label on the medicine in the fridge. I have NEVER been treated with so much respect, patience,  and compassion by someone in the medical profession.

The doc talked with the home infusion pharmacist at the hospital who was going to get in touch with others in Tennessee to see if my treatment could be arranged under the auspices of the NY doctor. I left his office late in the afternoon not knowing what the outcome would be.....

Tuesday morning I got up early and flew home. When I reached the airport I called Carl and he picked me up just as I made it out to the curb. He took me back to school with him. The kids were wonderful. They were hugging me and squealing. They had really missed me. It had been tow weeks since I had seen them. After the greetings were over I went into the office and called the pharmacy.... I talked with the same pharmacist who had spoken with my doctor. And she said that everything was worked out. Home Health would deliver 2 weeks of treatment to me at home the next day and discharge me. Instead of working through home health, I'll be an "infusion only" patient. From now on, I'll pick up my supplies each week at the pharmacy. I broke down and cried again. You would think I'm prone to crying, but I'm not really. This has just been a very emotional ride.

And how am I feeling?

Well, I worked all day Friday! Well, almost all day. I DID have an appointment with my neurologist (who had to "approve" the extension of my treatment). That appointment went well, too.

My headaches are getting better. I no longer have to take Naproxen for them. The light sensitivity is better. My speech is better. And my stamina is WAY better. I'm  not all the way back, though. At times I can hardly walk because the spirochetes are in my knees. They are in the joints of my fingers, too. That's a pain.

I still get worn out, and when I do, I get a headache. So I have to be careful not to push too hard.

This week we are off from school for Fall Break. We are driving back up to Massachusetts and I have another appointment with my Lyme doc on Friday. We will decide whether to extend my treatments for another two weeks. I'm guessing they will be extended. I asked him how we will know when to stop, and he said when I'm all the way back.

So, folks, I'm getting better. Bit by bit, I'm getting better.

 

Aleta

[jeannea]

Sounds like a great doctor! I hope this treatment really works.

[smcd23]

Yay! I am so glad for good news!

I assume this Lyme doctor is in the Albany/Upstate area? I may have to look him up for my SIL if she doesn't start taking better care of herself.

[cassandra]

Very, very glad to read such positive news.
Great to hear you are getting better. 


well done girl,       

lots of love Cas

[MaryJoe]

   Oh, Aleta< what wonderful news!  I'm so happy that you finally found a doctor that will listen to you and work with you.  It sounds like he understands how frustrating living with Lyme can be.  I think those stubborn spirochete's days are numbered.  Great news about the headaches lessening, also!   

[Traveller1947]

So glad things are looking up for you, Aleta!  The right doctor and a positive spirit can do wonders--sounds as you have both...All the best to you, as always.

[MooseMom]

I'm thrilled that you are definitely seeing the light at the end of this particularly long tunnel!

As for the crying, you know, when a person has been under stress for such a long time, any small modicum of relief from that stress can cause a flood of tears.  At least, that's been my experience.  So far from thinking you are prone to crying, the opposite is true.  That stress just builds and builds over time, doesn't it.  And then there is a small break in the dike, and here come the tears! 

I'm eager for your next update!

[okarol]

I hope things keep improving. The NY doc sounds like a very good resource!

[willowtreewren]

Time for another update!

I will be flying up to New York again tomorrow. This time I'll fly into White Plains and rent a car for the 25 minute drive to my doctor's. I'll drive back to the airport in the afternoon and fly home again tomorrow evening!

Two weeks ago I got held up in all that Sandy mess. My flight out of Albany was canceled and I ended up staying an extra day and a half before I could get another flight. I am glad I took an extra treatment with me! On the plus side all the schools were closed and I got to spend some quality time with my daughter and grandchildren.

Two weeks ago my doctor added a second antibiotic to my treatment. The improvement in my symptoms had stalled out, and he felt this might get it rolling again. 

Oh, I DO have to tell you about that visit! It was scheduled for 11:10 AM on the morning of Monday, October 29. To be on the safe side, I called the doctor's office at 8:00 AM (before office hours) to see if the office had been closed due to the hurricane. Imagine my surprise when my doctor answered the phone! He said to get there ASAP. I was already in the car and told him I would be there in 2 hours. I was further surprised when I arrived at the clinic to find that my doctor was the only one there. He was handling reception, blood pressure, taking payments....in short, he was doing it all. I was in and out in less than an hour and found myself heading back to Massachusetts before the actual time of my appointment!

I have to say that I really liked my doctor before this visit. I LOVE him now. How many doctors would hold down their office alone? That is dedication! He said that he lived near the clinic and didn't want his staff to risk getting out in the worsening conditions!

Anyway, with the double duty on antibiotics my neurologic symptoms are almost GONE! 

As a test I suspended taking my antihistamines on Thursday so I could see if the headache would come back. I can barely tell that I have a headache! This is amazing, considering that I have been suffering with severe headaches since APRIL!

The Lyme arthritis is still bothering me. But even that is getting better. 

Two weeks ago my doctor said that we would eventually stop the IV treatments and continue the oral antibiotic for a while. I have a feeling that will happen fairly soon. I am so encouraged by how much better I feel. I have my stamina back and I've been working some long days, including two trips to Kentucky (4 hours each way) this past week, with no ill effects.

Onward! 

Aleta

[cassandra]

This is great news Aleeta. I'm so glad to hear this disaster-time is coming to an end.

love Cas