Healing from Lyme Disease

I am healing.  I feel I am recovering from this disease.  Yes I have been here once before  Back in July, August, September 2010.  But I was on IV meds and had just gotten off of a round of 8 months of twice weekly injections.  This time it's different.  I am on NO DRUGS what so ever.  Ok, that's not entirely true.  My only prescriptions are Ambien and occasional Ativan.  I don't know if it was the Bionic 880 (I did 8 treatments using nosodes) or the therapy I am currently doing (I have a healer that uses ZYTO).  I am guessing it is a combination of the two and of juicing.  Juicing a green juice every morning reduces the inflammation in my body.  I feel better when I do it. 

I have accomplished more in this month than I have in the past year.  I finally made it to the eye doctor at Costco.  Haven't worn contacts since my wedding in 2009.  I got the exam I needed and FINALLY got new glasses!  I cannot wait for them to come in.  CAN-NOT-WAIT!

I am stronger, healthier, living my life.  I went out to dinner last night with a gift card we got, I have been Christmas shopping three times (in 1 hour increments & close to home), I have been getting dressed in CLOTHES (not sweats or PJ's) daily, and not stuck in the same clothes for 3 days at a time on my good days.  I have been showering almost daily (bad days I may skip it, but even my bad days aren't too too bad anymore). 

I am not saying I am returning to a "normal" level of functioning.  I may never be like I once was or like other "healthy" people.  However, the fact that I can get up out of bed and do things in spurts is amazing to me.  I may still miss out on 2 weeks of life a month, but the other two weeks..... 

This is it guys.  2 years and 5 months of acute illness (and possibly years of it weakening my immune system before hand).  Of being told I should "just get out more", be positive, take an anti-depressant, get back in shape, push myself, of becoming disabled by a disease that isn't truly recognized by ANYONE for what it is and what it is capable of.  I am so grateful to my husband for sticking by me.  For doing his best to get me what I needed regardless of our life circumstances.  With no regard to the people that we thought loved us that tried to bring us down and tear us apart.  He could have abandoned me like most everyone else.  Life would have been so much easier on him...

Daryl Hall talks about living with Lyme Disease...

Pop legend Daryl Hall talks about living with Lyme disease, why he is "ticked off" by the local deer population and how he stays youthful at 65.  (I love him, can you tell?)

See article here

Great News!

Since stopping my antibiotics just about a month ago (+/-), I have not declined. In fact, my husband thinks I've improved. I did go through my lyme cycle (flare) with limited suffering. That is a HUGE plus. Maybe this light therapy that I am doing is working. I have had 6 treatments and if all goes as planned I will finish the 10 treatments within the next 2 weeks. I had 3 consecutive weeks where I could only go once a week. 1 week because of a lack of funds, one week because of the holidays and then this week because I had to cancel an appointment because my husband had horrible food poisoning and couldn't take me. GREAT news (in order of appearance): I was approved fully for disability. After almost 2 years, 2 denials, an attorney and a hearing before an administrative judge, and then a two month wait, the judges decision was "Fully Favorable". It was sometimes a stressful process. I don't think I would have been approved without my attorney. He countered the expert witness testifying against me on several instances. This is a huge relief to me and my husband. I got my PiCC line out!!!!! I have been begging my doctor for months and he finally agreed. It was a fast and

Old picture of my PiCC line

painless process. My skin underneath the dressing is not happy . I have a rash from my stat lock but it will go way. The hole is healing. It is now a little slit where the made the scalpel cut but it isn't sealed yet so I am keeping it covered and sterile. Cannot WAIT to take a normal shower!!!! I will also try to find some way to be submerged in water. 17 months is a long time to go without full submerging! 2 summers no swimming!! Not that I've felt well enough to go swimming often, but it would be nice to cool off in the heat and be able to wade in the ocean. A hot tub and bath will be nice, and I am hoping I can do some swimming for therapy. I feel FREE!!! I feel liberated!! I hope I never have to get another one. 2 was plenty.

I have the hole covered and the rash exposed so it can heal.

 And finally, my stepson made the HIGH SCHOOL BASEBALL TEAM! He has tried out twice and not made it and this year, he has made the JV team! We are THRILLED and so proud of him. This is a REALLY big deal as baseball is his life. He hopes to become a professional baseball player one day.

There is some not so good news..... My oldest and largest dog, Rover (we call him big boy) was unable to get up off my bathroom floor the other morning. I had slept in and when I awoke, I knew something wasn't right with him. Home alone, no way to get him down the stairs (95lbs) and to the vet, I stayed with him until I could reach my husband and he could make it home. He did not appear to be in any pain, just couldn't get up. So I took all his vitals (temp, respiratory rate, heart rate) and just sat on the bathroom floor petting him. We got him in the car (with difficulty) and to the vet. The vet seemed to suspect something right away and he was right. Rover has a large mass on his spleen. We are to just spoil him and give him love until the time comes or he let's us know it's time for us to intervene. The vet's own dog happens to have the same issue. We love our Big Boy and will do all we can to keep him comfortable but will not allow him to suffer. He is very valuable to our family. He is a fearless guard dog and an all around good family dog. Love all members equally. My handsome boy.....

Daryl Hall on Howard Stern Talking About Lyme Disease

Daryl Hall on Howard Stern talking about having Lyme Disease. Says his wife and his step kids have it as well.

Light Therapy & IV Vitamin C

Went to my doctor yesterday in San Diego.  Did my 2nd light therapy treatment and did my first IV Vitamin C. I had done a Myer's Cocktail with a glutathione push the week before.  Did feel a little better that evening.  But this time it was 25 grams of IV C with several other vitamins mixed in.  As soon as it started to drip, I felt it.  Apparently it was the magnesium.  It came over me like a drug.  Fast and smooth, putting me into a trance like state.  I guess it has a way of calming you.  It made me feel weird.  My husband was asleep on the lounge chair in front of me but my trusty friend we'll call Hawaii was a couple chairs over.  He said "just go with it".  The acupuncturist said it was the magnesium and he loves the feeling.  But then I got hot.  REAL hot.  My skin even flushed.  I slowed the IV way down.  My doc double checked it and slowed it back down a bit.  My husband woke up and wanted to go home so he asked the doctor if we could speed it up.  Everyone just looked at him.    He has an excuse.  He was asleep!  I felt herxy and not so good afterwards.  Could it be that the magnesium isn't so good for me.  It was like night and day.  I was feeling pretty darn good and then I was feeling REALLY bad.  Even had to have my husband come to the bathroom with me because I was afraid I would fall.  INTERESTING.  I am supposed to do these once per week.

We made it home back to Temecula from San Diego for my husband to get back to work (he's a workaholic) and I just laid there in the car.  Feeling pretty crappy.  Got in the house and went to bed.  CRAPOLA for several hours and developed a headache.  But I still forced myself out of the house.  My husband got a paycheck that day and so he wanted to take the family out to dinner.  I didn't want to ruin for everyone so I sucked it up and went and I am happy that I did.  We went to Pat & Oscars and got a family meal of gluten ;)

My doberman, Mango has had some bad luck with her health lately.  She had an infected eye.  It was so HUGE that it had swollen shut.  Now she has a UTI.  Her antibiotics after the culture were $111 and guess what?  It's back and she just finished her last dose today.  Taking in her urine tomorrow to get looked at.  The last month, this dog has cost us about $500.  YIKES!

Going back for my 3rd light treatment Thursday.  Wish me luck.  This is a very expensive treatment.  $150 per treatment (twice weekly) plus time off of work for my husband to take me an hour each way, then an hour there, etc.  The IV's are $100 per.....  Aye aye aye!  So far so good being off the antibiotics....

Stopping the Antibiotics

Not the most attractive picture.

Happy Fall-back savings time......

I stopped my antibiotics.  Again.  I stopped the IV Rocephin 12 days ago (feeling ok with that) and stopped the doxycycline 2 nights ago.  Last dose was Friday and it's now Sunday.  I could barely lift my head from the pillow this morning.  I am giving it 2 weeks.  I promised my mother I would not insist my doctor pull my PiCC line out when I see him tomorrow.  If in 2 weeks I feel as though I am dying, I will incorporate herbals.  I will be in a rush to get them to my door.  I don't feel as though I can continue with antibiotics.  My gut (read instincts) tell me it's time to stop.  I've been here before and got right back on after 2-3 weeks.  Couldn't hack it.  I will either do the Buhner Protocol or Susan McCamish protocol.  For the past year, I have not seen much improvement.  Only in the first year did I go uphill.  When I relapsed back in September 2010, I never gained much ground again.

I am doing a light therapy using nosodes.  According to the developer of the therapy, you must be off all killing antibiotics and killing herbs for the treatment to work.  I haven't even told my doctor that I stopped.  I will spring it on him on Monday.  He should be thrilled I have my second treatment Monday.  I am looking forward to it.  If my blood results from the G6PD test are ok I will start IV Vitamin C therapy once per week.  I would rather be poked with a needle every week than keep my PiCC line in.

I have had a rough month.  28 bad days.  Just about as bad as it gets.  I am making sure I leave my house almost daily regardless.  I don't feel too bad today.  Just feel like I have a really bad hangover.  But I will have a little bite to eat and then accompany my husband to the local health food store for my daily juice.  Organic: celery, cucumber, kale or spinach, pineapple, parsley, lime, ginger

God help me......

Juggling Medications

I've been sick in bed or on the couch (mostly bed) for the past 2 1/2 weeks.  I crashed after my nieces came to visit me.  It was so great to see them and meet my new nephew.  I am not sure if I over did it preparing and then accommodating guests or what but I haven't had a "good" day since.  When I go for a long time with no good days to break up the bad, I get down and my positivity goes out the window.  I start to feel hopeless.  The light at the end of the tunnel has gone out.  I am questioning my treatment and what my future holds.  I am wondering if I will ever recover or if doctors will ever find the "key" to what is keeping me from getting better.

I decided to be more proactive.  I've done this before.  It is so HARD to take oral meds on time and eat properly, etc. when you are sick.  When your husband is working at maximum capacity just to make ends meet.  So I am going to have my friend make me a spread sheet for my meds and supplements.  I no longer take a lot of supplements as it's too difficult and expensive.  A lot of supplements and medications must be taken on either an empty stomach, with food, away from each other, etc.  I am trying to work out a schedule to get this together.  Any suggestions anyone has would be GREATLY appreciated.  Here is what I am juggling with my oral medications:

Doxycycline (antibiotic, 2 times daily, empty stomach)

Activated charcoal (once daily, detoxifies, away from everything!)

Nystatin (anti fungal, to be taken away from all of the above, 3 times daily with meals)

Probiotic (twice daily before meals taken 2 hours away from all of the above)

Living Waters Probiotic (I take it at same time as regular probiotic)

Chlorella (3 times daily with meals can be taken with probiotic but at least 2 hours away from anti fungal & antibiotic and activated charcoal)

Corvalen (twice daily with meals, doesn't matter what it's taken with)

Vitamin C powder (mix it with the Corvalen?)

Vitamin D3 drops (once daily away from doxy)

Vitamin A (once daily, away from doxy)
Milk Thistle (up to 3 times daily)

I'm Back

I have been away from my blog (and the rest of the online world) for the past 2 months because I didn't have access to internet at home.  But we finally gave in as my husband needs it for work and the kids need it for school.  I was also going a little nuts being housebound with no cable or internet.

I am so glad to be back.

An Update
I have been doing well health wise.  Still on IV Rocephin and taking the oral doxycycline DR.  My doctor wanted me to stop the doxy and go on rifampin (my stomach cannot handle doxy and alinia together and the alinia seems to be key to my treatment).  Within 4 days of being off the doxy, I went downhill.  Fast.  I got permission to start up the doxy again.  I need to get to make the trip to the doctor again to see if I can add the rifampin to the doxy but I need to wait.

Disability
I have my disability hearing on October 18th.  It's about a 45 minute drive.  I am VERY nervous.  They will have a vocational expert testifying against me.  Interesting.....  I don't know.  I am pretty scared.  My anxiety has kicked in.  I have been denied twice and this is the last chance.  It would make a world of difference for me to be accepted.  For myself and my family.

Loss of Love
On a sad note.  A little over a week ago, I was transferring my bird from my indoor cage into his outdoor cage for outside time and a garbage truck spooked him and he flew away.  It then stormed for 3 days straight.  My husband made me a bed outside and I laid in the rain for hours that day hoping he would make an appearance.  My beloved bird never made it home....  I was devastated and mourned the loss of that precious creature.