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. 

Doctor tomorrow & update

2 weeks ago, I started to feel better.  Not a "good" day where I do my hair and make up and get out of the house, that really hasn't happened since my last doctor appointment 2 weeks ago and even then, I didn't even get a chance to shower.  My friend had donated IV glutathione (doctor's ok) to me and I also started doxycycline.  Not sure which it is.  I started the doxycyline to combat the Anaplasma that I tested IgM positive for.  I think it was IgM, it's the 2nd one, I get them confused.  but it also helps with lyme and I was watching the Burrascano DVD from the March 21st conference in Northern California and it does something that I can't remember now.  Go figure.  I started with 100mg of doxy twice daily and then eventually upped it to 2 - 100mg doxy twice daily.  Doing ok.  Still doing the IV rocephin twice daily 3 days a week.

I also think the 2 week Alinia pulse helped to possibly open some cysts and kill some parasites, so when I did my IV rocephin pulse, things died.  I herxed mildly.  I think I posted previously that on the first 3 days of just 1 dose of Alinia per day, I herxed pretty good for 3 consecutive days.

I am excited to see my doctor tomorrow and will watch more of the Burrascano DVD today as I have started a list of questions.  One thing I LOVE about my new doc is that he can answer my questions!  I get excited to go because it seems like I learn something new and I am on my path to wellness (again).

Blessings and Bloodwork


The other thing I am excited about is that I was blessed in several ways.  In one day, someone donated the money I need to get my Igenex co-infection test done.  I only needed another $195 since LymeTap funded the other $580.  So I'll be getting that test done tomorrow.  I love to see what new surprises my last blood test I did at his office will bring me as well.

We tested for HHV-6.  Has anyone had experience treating HHV-6 with Valcyte?

I also was able to get the doxycycline and the Alinia that I needed to cover this month and also able to help out another person with their medications at the same time.  Yay to my girlfriend from high school and another perfect stranger for making that happen for me.  I also had a friend saving some IV supplies that I DESPERATELY neeed (saline & heparin flushes & dressing change kits).  My grandpa gave me some money for my birthday and I was able to send her the money to be able to ship it (she is in the same situation as most of us, no money).  I also had a friend of one of my BFF's who is also disabled call me and offer to help in what way she could.  It was so sweet.  She really wanted to help me and she is sending me a check for $25.  It was such a sweet gesture  to call me and we have both been friends with my BFF for many, many years yet have only met once!  I had several people help me and  it all came within 24 hours.  It's giving me hope and faith.

I saw someone on Facebook mention that their wife recovered from lyme after a year of IV antibiotics.  I emailed her and asked her what antibiotic & she said Rocephin.  She said, stick with it!  I am so glad I got back on it.  There was a reason I stopped for a couple of months.   A. to give my body a break and B. to let my mind know that it was working.  I started to herx mildly right away, and it straightened out my menstrual cycle right away. So instead of having my Lyme Cycle every 3 weeks (they come together for most women) I am now back to every 8 weeks.  I was able to skip last lyme cycle like I was before, I was only getting my lyme cycle with every other menstrual cycle.  So here comes my cycle.  Supposed to hit on Friday and I'm already feeling my Lyme Cycle come on.  Not going to be fun having to go to the doctor.  But the temperature out there is so much cooler and I hope hubby gives me a chance to go for a quick stroll on the beach.

My husband has been working 3 jobs.  Having to hire the attorney a couple of months back really put us in a worse situation than we were already in.  Struggling to make ends meet.  To keep gas in our cars, our kids & animals fed, and trying to keep our car and house at the same time.  I am glad that is over with even though it has left a deep wound in our lives.  My husband is my hero and so are all of you.......

Thank you for being there.  Thank you for taking care of me friends.  Thanks Jen for the wonderful birthday gift!

Please Vote for Anne's Lyme Awareness Video!

Please vote for my friend Anne Mears!  She created a video and submitted it to Capella University to win a scholarship.  She is on a mission to spread awareness of Lyme Disease throughout Southern California.  Please vote for her video.  The instructions and the link are from her below:


I have moved into 7th place, with over 100 votes needed to get into 6th place. Go to http://www.facebook.com/l/3AQAmR7-UAQBqDX79GZ2QiwirG1AZRY6lBfy-nsZV9YG8Bg/www.youtube.com/user/CapellaInspiresand scroll down to the Public Service section. That is the first section. Click on the “Most Recent” tab, and then scroll to the right one time. My video will be in the middle, named “Lyme Awareness Booth”. Click on the video and scroll back to the top, where the video will be playing. The Vote button will be on the right side of the screen. You can vote once each day. If I win, I will receive a $10,000 scholarship for my doctoral studies.

Nutrient Balance

David Rodgers from Nutrient Balance did a great webinar the other day.  I thought it was so great that I asked him if I could share on my blog so that I could share this great information with all of you.


- David Rodgers is a nutritionist from Michigan with a masters from the University of Bridgeport.
- Specialty: Chronic Lyme Disease as well as four other somewhat similar conditions: fibromyalgia, chronic fatigue syndrome, multiple sclerosis, and lupus.
- An all natural approach to healing: combining the latest in nutrition research with proven vitamins, minerals, herbs, phytochemicals, fatty acids, amino acids, detoxification measures and lifestyle/exercise modifications.
- Lab testing and natural treatments: for specific pathogens, hormone / neurotransmitter imbalance, vitamins, minerals, fatty acid, and amino acid testing, food allergy testing (including gluten sensitivity), and standard blood testing with corresponding therapies to bolster the health of the heart, liver, kidneys, thyroid, etc.
- Analysis of past labwork
- Creation of herbal protocols that matches specific pathogens and symptoms
- The vast majority of therapies at the Nutrient Balance Center are scientifically proven

Here is the webinar:

http://nutrientbalance.wiziq.com/online-class/589232-chronic-lyme-disease-7-natural-proven-steps-to-reduce-symptoms

It takes about 15 minutes or so before the content is actually started, so you can fast forward. There was a Powerpoint glitch, but I didn't create a new version of the webinar because I thought that the questions asked during the real event were quite good and I can't recreate them in a remake. Therefore, I apologize for the bland slides - they were supposed to look a lot nicer and better formatted.

Please see the website at www.nutrientbalance.com for more information. Be sure to click on the "about us" section, and also sign up for the free e-report which has lots of natural health information.

Desperate Times, Desperate Measures

http://www.crowhousestudio.com
It's entitled Transfusing Lyme

If you are familiar with this horrible disease (Lyme Disease) it not only takes away your freedom, your livelihood, your zest for living, your family, your friends, but it also takes away your ability to work and to pay for your medications.   The very medications you need to survive.  Yes I have tried going off them to see if I would be ok.  To sum it up.  I was not ok.

Here is what I need.  If you feel so compelled to help me in some way by helping me to do a fundraiser, or knowing someone that can do it.  I am desperate.


I need $560 by 7/30/11 to pay for my Alinia  That would cover my deductible and co-pay


I need $195 for a test ASAP


I need $250+  for my IV rocephin.  I have a 2 weeks supply left.


I need $150 for IV Glutathione


I also am in need of about $300 worth of supplements.


I currently have no income and my husband is working his butt off 18 hour days at his full time job and then 2 side jobs.


We are not lazy bad people, we have just fallen on really, really hard times.   My husband hasn't had a paycheck in over 4 months, yet he works full time at his own business.  We need money for rent, but I am not asking for that.  I am only asking that people to possibly help with my medical supplies & medications.  There are many more meds that I need, but this is the basic necessity.


If you have ANY ideas for fundraisers, please let me know.  I am on my own here.  I don't know a single person in the town I live in and therefore have no resources.  My family has their own stuff going on and I cannot borrow any more money from people.


I am asking because I have to.  I have no choice.


Here is my donate button through PayPal.  If you can spread the word and help me, that is all that I ask.  I just feel so desperate.

Another free and practically effortless way to help is to spread the word about my Amazon account.  If you or someone you know uses Amazon for purchases, those purchases can be helping me directly!  Just use this link when you shop and spread the word about my link. It's THAT easy.  I would greatly appreciate any and all help that I can get.  I have to reach out the community at this point.  I have no choice.
                       http://tinyurl.com/AmazonSonya


We are about to lose our car and our home.  We are days away.  But I cannot go without my medications.  I am finally feeling some relief and gaining headway.

Urine Nasal Spray & Klinghardt

Clearly NOT urine...

This is A LOT of information to absorb.  I actually  know someone that uses a neti pot and rinses their nasal passages with their 2nd morning urine.  This person is a patient of Klinghardt.  I'll NEVER tell..... but hey, if it works!!??

http://betterhealthguy.com/joomla/blog/242-a-deep-look-beyond-lyme

Lyme Disease All-Natural Therapy Webinar Scheduled July 26

This may be interesting!

Lyme Disease All-Natural Therapy Webinar Scheduled July 26

BREAKING NEWS: Sugar helps antibiotics work better, says study - Health - msnbc.com

Ok, so it's over 2 months old so not exactly "Breaking News", however, I just discovered it. So could this help the "hibernating" or cyst form of Lyme Disease?

Okay so I think it only works with a specific class of antibiotics. But if the sugar brings it out of "hibernation", then wouldn't it work with any antibiotic? Just a thought. I'm off to eat some s'mores.

Sugar helps antibiotics work better, says study - Health - Health care - More health news - msnbc.com

http://blogs.discovermagazine.com/80beats/2011/05/12/sugar-helps-antibiotics-kill-dug-in-bacteria/

http://io9.com/5801111/adding-a-little-sugar-boosts-the-power-of-antibiotics-against-superbugs

http://healthland.time.com/2011/05/16/could-a-spoonful-of-sugar-help-the-medicine-work/

http://www.healthzone.ca/health/newsfeatures/article/990263--sugar-makes-antibiotics-more-effective-study-finds

Christie Rampone of the US woman's soccer team has Lyme Disease

Christie Rampone adds a special story to U.S. women's Cup quest - Grant Wahl - SI.com

Off to see the good doc

I had to stop my Alinia yesterday.  Only took one dose.  I need to be able to make it in the care ride to see my doc without the GI issues.  I was just a couple days shy of my 2 week pulse.

I think it is entirely possible that I am herxing today.  NO WAY!

But maybe.  Strangest headache.  Really weak legs.  I've been having minor freak outs where I think something bad is going to happen and it doesn't.

I am trying to get to sleep by midnight.  My goal was 11pm but that's gone & went & I am still hooked up to my IV pole so that's not going to work.

I will write an expensive post probably on Tuesday after the appointment.  I am going to go to the beach if my body cooperates.  I will love it!

Good days to all today!!!!  xoxoxo  Sonya

Oh and I am going to try to pick up this book to read at the beach.  COMPELLING!

Life is Tough!

I didn't need to tell you life is tough.  Chances are if you're reading my blog, you already know it.

I need a break.  I need a break from worry, anxiety, stress, finances, side effects, depression, illness.

I have been praying for "us all".  I read somewhere that if you wish and or pray for good for everyone that will include yourself.

I hope no one minds if I vent a little......

I don't feel like I can take good enough care of my dogs.  I feel guilty.  I know things will turn around but it's so hard.  They are eating properly and good food, but they have issues they all need taken care of.  I am not about to give them away because I know the situation will turn around.  It's just a matter of time.  All poop may hit the fan before relief comes though.  It's just so hard.

I am still not well enough to leave the house.  I am finally up to my 2 doses of Alinia a day.  It affected me at first, minor herxing and then side effects from the Alinia.  Even if I felt good enough to leave my house I can't because of the GI issues.  Wondering how I am going to make it 1 hour and 15 minutes each way in a car to the doctor.  If all is well with me health wise, I plan to lay on the beach for a while that day as well.  He is 10 blocks from the ocean.

I am rambling and bouncing around mentally.  I am worried about my husband and his health.  It's not good.  The added stress and depression is not helping him.  I feel helpless and don't know what to do to help him.  I watched him breathing last night when he fell asleep.  Kept checking with my finger to make sure I could feel him breathing through his nostrils.

My friend's experience at John Hopkin's for Babesia

Herxed, Birthday, Cycle

I am finally up to the full Alinia dose.  2 pills per day.  Doing fine.  A little worse for ware and worthless today but it'll get better.  My lyme cycle hit (it's now) and it barely has phased me.  This is good news.  This means that the rocephin is working.  That the Alinia kicked my butt, but I think things died.  I just need to make a lot more progress before I can start to feel better & actually leave my house!

I see my doctor on Monday and since he has been on vacation for what seems like FOREVER, I need to bring him my MRI results & point out that my Anaplasmosis (Ehrlichia) test was positive and see what he'd like to do from there.

I family has been having a rough time financially.  Oh how you can really fall.........  Trying to stay positive, but it's hard.  I don't want to be one of those negative poopers.

I saw my parents, they came over the day before my birthday to celebrate.  I have to be honest, as far as appearance, my dad looks bad.  Since he still has so many sores in his mouth & throat from chemo & radiation, he can't eat, only drink certain things.  He has no facial hair but has eyebrows.  Once he can eat again, he'll be in tip top shape.  But geez, it's been over a month since he stopped treatment and they don't know why he isn't healing.  Go figure.  Regardless it was good to see them.  Even though they don't "buy into" my illness.  I just had to accept that long ago and realize that if it's not accepted in the hospitals like say, cancer is, then it's not going to be accepted by your family and most of your friends.

Alinia update

Alinia isn't going as planned.  I started with 1 pill 2 days ago and I don't know if I had a herxheimer reaction or what but it was not pleasant.  I have to admit I was afraid to take it.  2 hours after 'bottom's up', I had to go upstairs and go to bed.  Then I was just in pain and felt sick and out of it for the next several hours.  3 hours were really bad.  I also had to visit the little girls room MANY times.  I didn't want to be alone.  I called my husband and asked him to come home.  It was pretty scary.  When 7pm or so hit, I felt much better.  I opted not to take the 2nd dose of the day because I obviously wouldn't be able to sleep and didn't want to keep my husband up all night.  He agreed and said he didn't want me to take it.

So yesterday was my 2nd dose.  I SO did not want to take that pill.  I had a lot of pain yesterday but didn't feel quite as bad as the first day.  Only had 2 bathroom trips.  Didn't start to feel better until 8pm.  Did not take night dose as I feel like I am having a herx reaction and don't want to over do it and end up in the hospital.  I took a teaspoon of my activated charcoal at 8pm to help absorb some of the toxins.

Haven't been sleeping well.  Been waking early......

Took 3rd dose about 2 1/2 hours ago.  So far I think I feel ok.  Once I get to a level where it doesn't kick my butt and I know this is a herxheimer reaction and not an allergy or other reaction to the drug, I will go up to the 2 doses per day.

Symptoms I have been having thus far:

Diarrhea & lots of noise going on in my abdomen
Headache
Severe neck pain
Muscle (and what feels like) bone pain
Fatigue
Vision impairment
Sleep disturbance
Painful sides of neck (under ears and down, feels like my glands)

I start my pulse for my IV Rocephin tomorrow.  Should be interesting......  wish me luck!  I need to get stronger, I really, REALLY need a shower!

Getting ready to start Alinia!

I am starting my first 2 week pulse of Alinia tomorrow.  twice daily, 500mg.  I am still on the IV Rocephin pulse of 2grams twice daily for 3 days on, 4 days off.

I am excited and nervous at the same time.  Never know what a new drug is going to do to you.  For me it will probably just made me feel better.

Hope everyone had the best Independence Day ever!  I saw some fireworks from my front porch, went for a couple of walks, and even went to a friends for a nice dinner party last night.  FUN!  It kicked my butt though and felt like hell today.  I knew that was going to happen, but it's ok.  I had fun.  

Day 2 Rocephin

Did my 2nd day (4 doses of IV Rocephin).  Felt crappy off & on but nothing major.  Then suddenly tonight I could barely stand.  My husband had to help me to the bathroom.  It was quite comical.  Usually when stuff like this happens, I get scared.  But it wasn't scary.  My husband then decided I'd better get upstairs & get my IV done.  So I crawled up the stairs.  Literally crawled up the stairs.  Barely made it to the top.  Then I just layed there.  I almost felt drunk.  My husband asked me if I took anything... Nope.  I felt kind of happy too.  It only lasted about 10 minutes, then I just felt like poo.  Head about to explode.  Wish I could drill a hole in my skull to let the pressure out.

Can't wait to start the Alinia!  Got it today.

Re-Started Treatment Today

I started my IV Rocephin today.  I haven't been sleeping well, so I woke up at 6:30am and went back to sleep via 2 valiums.  Woke up at 1pm.  WOW!  I knew I needed sleep.  So I didn't get my IV in until around 2pm (a little late).  So finishing up my last dose now.  I should be receiving the Alinia in the mail tomorrow or Monday.  I will watch for it.  Just got my new dose of LDN 4.5mg.  Saved myself some money there.  YAY!  But it was hot when it got here.  I am sure it's ok if it's warm for a period of time.  It can be such a disadvantage to live in a HOT area.  The stuff that gets delivered is usually delivered hot.

I hope to start feeling well soo.  I really can't wait to start the Alinia.  I hope it starts to give me my life back.  I wish my doctor was in town so I could know what my plan is now that we figured out I am diagnosed with Anaplasma.

I'm rambling now.  I'm on Ambien.  So I'll try to fall asleep.  I feel like I need to eat something..

Relapse

Since I stopped my antibiotics, I have gone downhill.  And downhill FAST!  I have had a major return of symptoms and it scares the crap out of me.   Air hunger, painful, stiff neck, feeling like death warmed over!  Headache so bad that I can feel my heart beating in my teeth.  I can physically feel it with my fingertip!  When I wake up my heart is racing (I haven't even sat up or rolled over yet)! I have dropped the 10 lbs that I gained back and am now back at 99lbs.  As I type this, my hands hurt, my muscles ache.  I am feeling better tonight THANK GOD, but have felt so bad I haven't been able to shower since Sunday (it's Wednesday now).   I have been in bed (or couch) since Sunday afternoon.  I had a decent morning Sunday and Saturday night was good, but I had been in bed (or couch) for several days before that.

I am sure the immense amount of stress me & my family have been under has had a lot to do with the relapse as stress weakens your immune system....

I am scrambling to get on the Alinia (anti-malarial drug) my doctor prescribed as a cyst buster.  I have a $500 deductible and a $60 co-pay.  So I need to come up with $560 for 30 pills.  But after that it will be $60 per month.  Please pray that this works for me!  My doctor will have me do it 2 weeks on (500mg twice daily) and 2 weeks off while doing IV rocephin.  I am hoping that even though my doctor is on vacation until mid-July, that his nurse practitioner will order up the bags of IV sodium chloride I need.  I have 25+ vials of rocephin and at 6 doses a week (2 grams twice daily) that will last me a month.

I got to see my dad on Father's Day.  I haven't seen him since weeks before his chemo & radiation treatment started.  He doesn't look so hot but he is hanging in there.  It was nice to see him and my mom.

Elizabeth Chalker & a Source of Low Dose Naltrexone (LDN)

Elizabeth Chalker got on a plane to see the LLMD she needed to see!!  That is the good news.  One of her friends updated and said she is hanging on by a thread, doing really poorly waiting to see the doctor.  I believe the appointment is tomorrow.  I have faith that she will make it to that appointment.  She's made it this far.



Low Dose Naltrexone

I found an inexpensive source of LDN (Low Dose Naltrexone).  I was paying about $37 for a 30 day supply.  Skip's Pharmacy in Florida "services" California too!
561-218-0111
800-553-7429
Fax: 561-218-8873
Emails:  General info:info@skipspharmacy.com
Clinical Questions:skipthepharm@aol.comI am getting 4.5mg, 30 capsules for $19.95 plus $5.95 shipping.  So 26 bucks!  Not bad.  Every penny counts so I wanted to share them with you in hopes that it can save someone else some money.  Got my script faxed over to them, they called me, and they are getting it shipped out.  Hopefully it will go out today.  I will NEVER go without my LDN.  Last time I was without, I relapsed.  I don't know if that was the cause, but I won't be without it.  I've had to cut down my dose to make it last, but it'll all work out....

Help Elizabeth Chalker

This is Elizabeth in her happy, healthier days.

Elizabeth Chalker is suffering greatly and she needs everyone's help to raise money to hire a charter plane to get her to see the only doctor in the country that will help her.  She has extreme sensitivities (beyond comprehension) and cannot fly commercial or have stops in between.  She also need a pressurized cabin.  She needs to get from Boca Raton, FL to Salisbury, MD on June 19th.  You can find out more information in the links below.  This has become a life or death situation for someone that cannot help herself in any way.  


If you know ANYONE that may be able to help financially or with a plane, please forward this information to them.  All the charity flight organizations have already been contacted & because of Elizabeth's dire health condition, they cannot meet her needs.  So she needs a private plane.


http://www.publichealthalert.org/pdf/2010_06.pdf


http://www.helpelizabeth.net/

Changing Course and Fighting For My Family

Still waiting on MDL Labs test results.  The C3a & C4a kit has STILL not arrived to LabCorp.  I also contacted Jewish National (they perform the best tests for this) and I am going to get a requisition signed by my doctor to have it sent there by LabCorp (like they used to do) instead of them doing their own testing.  Only issue I am finding now is that they have to add that preservative after blood draw & when speaking to Jewish National, they don't want that preservative in it.  I will just delay the test until I get it all worked out.

I never heard back from my Malibu doctor on the MRI for my brain.  Still don't know what caused the seizure.

My step son is going to be tested through MDL Labs for Lyme and co-infections because he has been having pain throughout his body (low back pain, now better, but now his neck is hurting, his right ankle & right knee & shoulder were hurting, with odd things going on (numbness in his hands, etc which has also gone away).  My step son is concerned.  He has also been under a lot of stress with the family drama and that may be exasperating his symptoms and may not be Lyme related, may be stress after all.  I hope not and I will continue to believe that he is a perfectly healthy kid with every day aches & pains from the sports he plays until I am told otherwise.

I have stopped most of my supplements and meds and I am only taking some new supplements that were sent to me by an Amish man in Pennsylvania.  He heard about me through a friend of a friend and SWEARS these supplements are what help when people in their community contract Lyme Disease.  They work in fields & close to animals & it is widespread through their community.  I started 24 hours ago & will be faithful in doing what he says I should do and will give it a go for 30 days.  I will keep my blog updated as I go...

On another note......

My family's life has basically been turned upside down and shaken by some individuals who do not have my step children's best interests at heart.  My poor children feel as though they are being ripped apart in a tug 'o war.  Adults that wish to flex their "power", influence and their financial means for their own selfish needs & desires on someone else's children.  I have not been able to concentrate or do anything but worry and stress for the well being of my husband and my step children.  My kids are victims in a game that should never be played with children no matter what their age.  My husband's heart is not well and the stress of this is causing him to become more ill.  I am VERY concerned about him.  We had to hire a high powered attorney (friend of a friend and is cutting us a MAJOR deal) and my husband has been without medical insurance because we had to make a choice.  Attorney?  Or Medical Insurance, food, medication, doctors, etc.  Obvious choice is to fight for our children.....  Please keep my family in your thoughts and prayers as we fight an uphill battle.

LymeTap, New Doctor, C3a & C4a tests

Thanks to LymeTap!!  I now only need to come up with $195 for co-infection panel testing through Igenex.  The co-infection panel requested by my new doctor was $780.  I have a lyme friend that just got reimbursed for 75% of their tests as well.  This is a great program!  I just had my blood sent off to MDL labs (see previous post) on Thursday for their panel of Lyme & Co's.  I know of people that have been negative at one and positive at the other.  Since I am sick & need to find out, I opted to get tested at both labs because if one doesn't come up with something, hopefully the other one will.

I can't wait to start treating co-infections.  My new doctor, I have seen him twice.  One for initial consultation (takes my insurance THANK GOD & THE UNIVERSE).  Great first appointment.  Was not rushed what so ever.  He sat down & answered all of our questions (my husband & I).  We even learned a few things!

For instance, did you know that natural sources of melatonin (non-synthetic) helps your body to create it's own glutathione?  Also helps you sleep.  So a double whammy.  Here is what the doctor prescribed (OTC).
I started taking it, he wants me to start at 2 drops at bedtime & work my way up to 10 drops per night under my tongue.   It makes me SO sleepy!  I have been on various brands of melatonin for years.  This is the ticket.  I am up to 3 drops per night.  Tastes like vanilla extract.

• My globulin (protein) levels are low, so he wants me on Whey Protein.  This is the brand I opted for even though there are much better brands out there.  I trust Source Naturals & I am on a tight budget.

This is a good price for two 16oz containers.  I bought 1 container at iHerb.com for $21.27 but should have got 2 & saved myself $4.  This one has FREE shipping.  I have it in my Amazon cart for next time.

• My Vitamin D levels have gone up a pinch since I started supplementing.  My doc says they are to be ideally in the 60's.  I think I was a 32.  He wants me to supplement with 10,000 IU's of Vitamin D3 & also 10,000 IU's of Vitamin A.  But it needs to specifically be Retinyl Palmitate, not Beta-Carotene.  
• We upped my dose of Low Dose Naltrexone  from 3 to 4.5mg.  I have been on 3 mg for since treatment started back in October/November 2009.  My new doc likes to up it after a while.
• Nystatin once a day.
• SUPREN Oral Drops (homeopathic medicine) for my weak adrenals (chronic tiredness, loss of appetite & gastrointestinal complaints).

Another thing my new doctor did was suggest co-infections (DUH!).  He will treat without testing, but since I had the advantage of the labs that accept my insurance & the funding from LymeTap, we are going to wait & see.  He has a plan.  If I have Babesia, we will treat that first.  But we definitely suspect Bartonella so we will treat that with Rifampin.  He wanted me to do Levaquin (it's about to go generic) but I have heard a lot of horror stories.  Then we will do 1 month of Diflucan alone (weakens the bacterias).  Then I will go back on IV Rocephin & pulse Alinia (cyst buster but also treats babesia) 2 weeks on, 2 weeks off.

Of course this all depends.  This plan was at the first appointment & then he did a proper CD57 through LabCorp (my old doc was using Quest NOT BEUNO).  My CD57 has always been high.  Between 202 & 223.  Very high, therefore the thinking is that my lyme is in check, just need to treat co-infections.  LabCorp is the place to get your CD57 tested.  I have told my past doctor this many times, but he "doesn't use LabCorp".  Well, my CD57 is NOT 223, it is only 32!!!  HOLY LOW CD57!!  That's why he (new doc) called me back in for a follow up appointment.  So change of plans.  Still waiting on blood work from MDL & Igenex (when I can get that test done), however, we will probably be treating with the Rocephin at the same time as the Rifampin and maybe Alinia.  We'll see what he says when results come in.

He also did a C3a & a C4a blood test through LabCorp (preferred lab).  The LabCorp I went to did the wrong test, they did C3 & C4.  So I have to get it re-done.

Here is the deal with the C3a & the C4a

LabCorp no longer sends the frozen plasma to National Jewish (NJC) in Denver.  They have also changed the test codes.  This is as of April 25, 2011.  

The test numbers for the new tests are as follows:
Complement C3a – 004220
Complement C4a – 004330


Please make sure you let your doctors know this.  You will need to call LabCorp in advance & request that they send a test kit (or kits) to whichever LabCorp lab branch you will be getting your blood drawn.  The new collection tubes contain EDTA/Futhan, which limits formation of C3a and C4a after collection.  I requested mine on Friday so I will call first & see if they got the kit in Tuesday.  She did say it may take 2-3 days.  Since this is a new test.  I would make sure you tell the person drawing your blood how it is to be handled (they probably won't like this, but I will be nice about it & explain that I had it done wrong the first time).  I will call first & make sure the test tube is "chilled" before they draw my blood.  Then the lab technician is to add something to the test tube immediately & send it frozen.  This is very important.  Here are the instructions.  They are very specific & this is new testing, so maybe even print instructions & insist it's done correctly.  

Financial Assistance For Lab Testing

In my last post, I had mentioned LymeTap and how I had never heard back from them.  Well it ends up I did hear back from them, I just never got the message!

After a nice conversation with someone over at LymeTap and I am happy to relay their information in hopes that other people can get assistance for Lyme & Co testing at any CLIA approved lab.

You must qualify financially for the program.  LymeTap will reimburse you up to 75% of the cost of the test.  You must submit an application, the first page of your most recent tax form (1040) and the requisition form for the testing signed by your doctor, among some other requirements.

Click here to see if you meet the eligibility requirements.
I am trying to get my application together but I don't have ink in my printer!  Hoping to get that together ASAP!  I will be requesting a co-infection panel testing from Igenex.

Next post will be about my latest doctor appointment at the new doctor I went to on Monday.  GREAT APPOINTMENT!

Lyme Labs That Accept INSURANCE!

All I have ever heard about in regards to getting accurate Lyme Disease testing is IGENEX.  I paid $450 for my Lyme Disease test through them cash.  Boy did that hurt.  I tested negative through the standard labs & also negative through Igenex in regards to having built up antibodies for the Bd.  But my PCR was positive for Lyme Disease through Igenex & the health department was alerted.

I have been talking about how I cannot afford the co-infection panel through Igenex.  It runs about $650-$850.  So therefore I have never treated co-infections & here I am, still house bound & sick nearly 2 years later.  I was given info on a program called

New Doctor?

I have an online friend that sees a doctor much closer to where I live (an hour each way & a lot less traffic).  The doctor is located in downtown San Diego & he accepts my insurance.  When I called to ask questions, I was told his specialty is general medicine, but he "specializes" in natural medicine.  DING DING DING DING!  I don't think my current doctor can help me anymore.  I love him.  He is truly a good person, but I have been leaving there disappointed every month that nothing is switching up in my treatment & we are not treating co-infections.

I stopped my IV Rocephin about 12 days ago (I should have written it down).  I keep meaning to re-start a daily journal.  I am so spacey lately, I forget to take my meds, flush my PiCC line, take my supplements, do my sauna, bathe, cook healthy meals, etc.  I am just not taking care of myself and it is very hard to do so.  Once I head downstairs for the morning, I rarely get off the couch.  At least I am not in bed, right!?  I have no energy, I am irritable, I am sad & lonely, don't feel like I have a support system, I have no energy.  I feel like every time I get on the right path I get the rug pulled out from under me.  I feel so defeated.  A lot of it has to do with my treatment (or lack there of).  I am pretty much miserable (just being honest).

Got some blood work results back today.  I am low in Globulin and Vitamin D.  I just have Vitamin D insufficiency, not deficient.  But I know the numbers should be on the high end.  I have no idea what the globulin means.

I have A-Bart & A-L Complex on the way from BioResource, should be here Monday.  I hope to start that & see what happens from there.  I am still taking my oral Biaxin because when I was off of it for 1 1/2 weeks, I had some symptoms return so....  Ugh.  So frustrating!

I just don't know what to do anymore.  I hope this doctor (May 16th) gives me something that I have been missing.  When I feel good.  Everything is good.  No matter what.  Wish me luck!

Oh P.S.  I started my Lyme Defense Tea (Buhner Tea) again today from www.MistyMeadows.org!  I know I felt better when I was on it before.  But I was doing better in general back then.

CANCELLED: Dr. Klinghardt Teleseminar

CANCELLED:  I just received word today that the seminar has been cancelled & postponed.  Dr. Klinghardt was double booked & they hope to have him re-booked soon!!!


LYMEHOPE

Where there is hope, there is healing

Hi:
I am excited to be able to announce another LymeHope teleseminar......not just ANY teleseminar, but DR. KLINGHARDT!!  I have been trying to arrange this since January.  Dr. Klinghardt is a very busy man.  This is a rare priviledge to have him with us.  Please pass the word along.  This is short notice; I got the final word today.  We need to move quickly to get the word out.  Dr. Klinghardt will be sharing the latest, cutting edge information.

BioResource 2011 Conference

Read this people!! Better Health Guy has some good info for us ALL!!!

BioResource 2011 Conference

Byron White Formulas

I would love to get off of antibiotics.  I am not getting better.  I feel as though I am getting worse.

I have managed to fund raise a bit so I had some money & I had to choose.  Should I get the bags of sodium chloride (minimum $135) for my IV rocephin or should I get the herbal treatment that many people say helped them more than antibiotics?  I don't feel as though I am getting better being just on rocephin & oral biaxin so.....

How Lyme Disease Changed My Relationship with Nature

Great video a Twitter friend made. She shared it with me but I was unable to "embed" it and share it with you! Now I can. Please watch it. Share it with your friends & family. Let's do our best to kick off May Lyme Awareness Month!!!! Let's change things NOW! And let's learn to understand each other. Great job Croneslesbo!!

April

This past month has been very hard on me emotionally.  I am getting close to 2 years in treatment & being sick.  I have been getting worse.  I KNOW in my gut it is because I have co-infections that are not being treated.  My CD 57 is high & has been high for a year, yet I am not improving.  This HAS to be co-infections.  My doctor won't treat me for Bartonella, which I suspect & have symptoms of.  I asked for Rifampin after Burrascano's last talk.  Rifampin treats Bartonella & it may also act as a cyst buster.  So a double whammy for me!  I can't take traditional cyst busters (flagyl or tinidazole) due to an allergy.  I was very disappointed at my last appointment.

I need to get an MRI on my brain

Help Victims of Lyme Disease!

Right now I know of 3 fundraisers going on to help the victims of Lyme Disease. One is myself, one is someone I know, and one is someone named Elizabeth. Please go to all 3 of these websites, read our stories and see what you can do to help. It doesn't always take money!

Raise Money Online

Raise Money Online

Click Here!

There will be an online auction, and many other great things!  Please check it out!

Supporters can also help by.... Do you shop on Amazon?  You can help me raise money while you shop at no extra cost to you.  Please use this link whenever you shop on Amazon & you will be helping me raise treatment funds at no cost to you (I get a small percentage of every purchase made).  http://tinyurl.com/AmazonSonya

In addition, I also am a Independent Consultant for Thirty-One Gifts.  Great products for every body.  Please check out my website at http://www.mythirtyone.com/SonyaNelson and click on view catalog to see what this great company has to offer.

And one more thing before you go...  Please watch the documentary Under Our Skin . There in lies the truth about Lyme Disease.  There is a big IDSA cover up going on about this disease and it's the reason we don't get proper treatment.

Found the actual 'Cowden Protocol'!

Okay Lyme Friends.  After much digging & scouring the internet, I finally found the actual protocol.  This is the most recent protocol version (dated) 02.23.11  I posted it to my Lyme Store last night.  I am investigating both Cowden & Byron White.  Leaning more towards Byron White, however I hear great things about a couple of the Cowden Herbs.  Particularly the

Lauricidin Herx

Since I got out of the hospital, I still have yet to get back on all my medications & supplements.  My nightly ritual of taking Lauricidin stopped.  I was up to something like 35 pellets a night.  Nearly half a scoop.  So it's been over a month.

Today I feel HORRIBLE.

Hurting

I am so sad today.  People can be so hurtful and cruel.  Even when they don't realize it.  

New Biofilm Busting Protocols For Chronic Lyme Disease | Jenna's Lyme Blog

Explaining Biofilms

Below is an AMAZING article explaining Biofilms.  It is also very long.  I suggest reading it, then printing it and bringing it to your doctor!  Hopefully your doctor will read it.  

"Biofilms form when bacteria adhere to surfaces in aqueous environments and begin to excrete a slimy, glue-like substance that can anchor them to all kinds of material."

http://bacteriality.com/2008/05/26/biofilm/

Here is another excellent article from Jenna's Lyme Blog.

New Biofilm Busting Protocols For Chronic Lyme Disease | Jenna's Lyme Blog

Another good link that has very brief info.
http://planetthrive.com/2009/04/doctors-use-lumbrokinase-to-help-conquer-lyme-disease/comment-page-1/#comment-14593

Enzymes that are believed to break up biofilms.  You may not take these if you have blood clotting problems or are on blood thinners!

    

The New Cowden Lyme Protocol | Jenna's Lyme Blog

I found this post quite interesting! Hope it helps some of you....

I am having a really rough time emotionally lately. I wonder if it is just April. I hope people are feeling good and staying positive. I am trying. Still searching for answers.....

The New Cowden Lyme Protocol | Jenna's Lyme Blog

Online Book Club

My friends & I started an online book club on Facebook.  If you are on Facebook & would like to join, please do so!  This is a non-lyme group, however we have a lot of  "LymeHeads" in the group as of now (it's still new).  Here is the link to the group:

Bad Ass Book Club

For the month of May, we have selected a suspense/mystery novel to represent 

May Lyme Disease Awareness Month!!

Lyme PSA's from last year.

May is Lyme Disease Awareness Month


This was really fun to do and all the people were wonderful.  It was nice to see Nani & Ashley (of Lymenaide) & Z.S. again.  This is where I met Bev Feldman (author of Lyme Sucks), she was operating the teleprompter.
There are a lot more videos from several celebrities that Ashley wrangled up.  You can go to Lymenaide's YouTube page to view more.  I just kept getting lost.

Protocol

I just added a tab to the top of the page that shows my current protocol.  It's not a very good protocol and I plan to change things up.  I wish I had help.  That is all I am taking right this second.  Not even taking supplements. I will start all my supplements up again.  I have been really down in the dumps & not caring and almost in "giving up" mode.  I am sick of the struggle.  I am sick of being alone I am sick of feeling like I am going crazy.

Helping people makes me feel better.  It's my job....

Oh ya, I am in need of IV Administration sets (tubing).  If anyone has any that they do not need, will you please let me know?  Thank you!

My mess

This is my bed today.  Got a shipment of Rocephin that I will start tomorrow.  Started clipping coupons, but can't really buy anything anyway, so what's the point?  Here is the laptop I sit on all day/night. If I'm not sick, I'm out enjoying the day or at the library.  Oh ya and some medical bills from the ER that somehow slipped through insurance billing.  Hope I remember to call them with my insurance info.  What you can barely see on the right is my sauna that I meant to sit in today.  And you can't see my IV pole.  It's ugly.  I should decorate it!  Any suggestions?

Hate being sick.  I mean, I'm always sick, but I hate being THIS sick.  Makes me all negative and crappy.  -Hopeless

SpiroChicks: The Perfectly Abnormal Condo

Cute post. Thought I'd share it with the rest of you.

SpiroChicks: The Perfectly Abnormal Condo

Mixing Meds is BAD! (TMI)

WARNING:  This post contains TMI.

I spent the evening and night two nights ago puking my brains out. It started out much worse though. I was in a lot of pain that day felt horrible (lyme cycle, day 1). I took my usual swallow of pills, Biaxin (antibiotic), GalaChrom (supplement), Lithium Orotate (supplement for mood and to protect brain cells), and Milk Thistle (Liver/detox).  I take them together all the time.  People say Biaxin is hard on their stomachs, but I have never had a problem popping it on an empty stomach.  I ate a greek yogurt and about an hour before.

Oh Lyme Cycle, how do I love thee?

My Rendition of a Beautiful Sonnet

Oh Lyme Cycle, how do I love thee?  Let me count the ways....

I love how you make my head & neck hurt
I love how you make my body ache
I love how you make my face squish up like an old woman
I love how you make it so I can't fend for myself
I love how you make me dizzy
I love how you make me so weak, it hurts to walk
I love how you make my insides hurt
I love how every noise sounds like it's screaming in my ear
I love how you make me grumpy & agitated
I love how you leave me helpless
I love how lonely you make me feel......

Now you know what to do....

I've Had It Up to HERE!

My trusty pharmacy could no longer get my rocephin at the price they have been getting it for me, so I need to find another supplier.  It's so hard. I am so sick of calling around, getting a new order from my doctor, etc.  It's work, stressful work.  My old pharmacy would send it to me & then bill me.  But now I need to come up with the money up front.  Rent is due tomorrow........

Burrascano Notes from March 21st talk

PLEASE NOTE:  Because the presentation was so dense and rich with information, there may be some info that was left out.




Dr.  Burrascano has treated over 10,000 patients with Lyme since early ‘80s.

“It is up to you. Learn as much as possible. Do as much as possible. Have a positive attitude.”

Dr. Burrascano’s definition of Lyme Disease

“Lyme disease is the illness that results from the bite of an infected deer tick; it’s not one germ.”

 Stages of Lyme

Early Lyme – I