This blog used to be titled Sonya Fights Lyme. But I am no longer "fighting" Lyme disease. I am pushing forward, no longer a victim, no longer angry, no longer searching. I still have symptoms, but I am not letting them destroy me.
Friday, December 31, 2010
I'm back! And we are moving!
We are moving to the city of Temecula. I am happy to report that the entire family (the 4 of us) are equally excited to move. My husband drives out there almost daily & he has now starting working for a company out there as well. The kids' high school they will be attending is a GREAT school. It is a California Distinguished School and has a rating of a 9 out of 10. The athletics program is wonderful. I spoke to the athletic director personally & he was a wonderful man that truly cares about the kids at that school. We was very positive & even promised my 14 year old baseball tryouts! They already held them, but he promised he'd get a shot at it. His old school is corrupt in the sports department and I knew it going in, but I didn't realize how much. I recently heard they are under investigation for the baseball try outs. My son wants to be a PRO baseball player & being able to play high school baseball would be wonderful for him. Fingers crossed! The coach did say he would have to be better than average. And our 16 year old does swim & they have a great swim team as well. So thrilled. She doesn't really have to try out for swim. He said as long as she can get across the pool without drowning she makes the team. That's how it was at her old school too. She gets soooo tan even though swimming is a WINTER sport!
We are all just happy to be getting out of Riverside. We will also be saving several hundred dollars per month. Our family will be happier for sure for many reasons. For hubby & I, we have been wanting to for years. There is much more to do in Temecula & we are closer to San Diego! Our ultimate goal!
Monday, December 13, 2010
Good days (and bad)!
I need to come up with $480 FAST. Well, by tomorrow to pay for my last 2 weeks of IV meds. We're not sure how we're going to do it. I wonder if when they call for delivery tomorrow if they will deny me. I'm scared to be honest. We have an escrow closing any day. Hopefully by the end of the week. I need a miracle! Things work out though. They always do somehow.
Saturday, December 11, 2010
We have to move :(
So the place we are looking at on Monday will allow us to save $500 a month. That's significant. It's not as fancy as I am used to. But I must admit I have been somewhat spoiled. So I decided that since I am sick & can't work, this is worth it. We would drop down a lot more, but we have 2 grown kids & 2 big dogs. We need more room than a tiny 3 bedroom house could afford. So we found a 4 bedroom (hubs needs an office) that is in the same nice area. Same California Distinguished school. This is perfect, less stress for hubby because it's walking distance to the schools & all the parks & sports centers. I often times don't drive the kids anywhere because I am sick. He is so busy trying to keep us afloat & the kids have so many things going on that it's terrible that I can't do all the driving all the time. When I feel good, I always drive.
One negative for me personally is that I will be even further away from my doctor. There is a lyme doc in San Diego, but she doesn't take insurance. But I only go once a month, so it's not that bad. We just hate driving!
I am going to Malibu next week to see my doc & my BFF is coming with me. We had so much fun last time. I will be sad to be moving away from her, but it's only 45 minutes & I think her son's father lives out that way, so I can get her to come out.
Good Days
I had a good day today. Not great but not terrible either. I got dressed & got out of the house! Yesterday was a crap day. The day before was GOOD though. I can't remember what I did. I know I cooked dinner. Cooked my hubby a great breakfast today & made him a great dinner tonight. He needs some pampering. Now I need to go do my IV infusion & then go to bed. I noticed I have had less muscle twitches lately. Just had one a few minutes ago and that's what made me realize that they are diminishing. I got my supplements, so I am really getting on those to help my body heal. Seems like I get about 2 good days a week. I need to start exercising! YOGA would be great.
Anyone have any left over IV supplies?
If anyone has any left over IV supplies can you please contact me? I am trying to save money on my infusions. Right now I am paying $30 a dose @ $240 a week. I am trying to purchase all my supplies, meds, seperately, that way I think I can pay about $15 a dose.
Friday, December 10, 2010
I changed the face of my blog
Well, today was a good day. I got up & got out. I also got all my supplements in. YAY! I am going to hit it hard. I'll take a pic of my daily regimen when I can remember. We went and looked at a new place to rent as we cannot afford this place anymore. If we get this new place, we will save $300 per month. Is that significant enough to move? We may save even more because it's smaller, only has 1 AC unit to run (summers are very hot here) and no pool. I really value everyone's opinion. The home is very nice inside & the kitchen is AMAZING. The yard is run down & can use some work. Biggest bummer is that there is no covered patio. Riverside needs covered patios. But there are trees all around, so it may work out. I looked for cheaper places to rent but anything cheaper than that is either way too small or pretty run down.
I hope everyone had a good day today. Things are looking up in Sonya's world. I have definitely needed a boost as of late. I hope I feel good tomorrow. If I do, the Christmas tree will go up!
Monday, December 6, 2010
I'm baaaack!
A lot of real "crap" has been going on in my life lately and I am not sure if I want to be a big fat downer or not. Real estate market is crap, we can't get our deals to close (not our fault) and therefore no paychecks. So we haven't been buying my supplements for about the last four months. Maybe that's why I've been sick? I last bought my supplements in August & I started taking them just once a day instead of twice a day to save money. So my hubby borrowed some money so that I could buy my supplements. They will be here Thursday. I still have ac ouple I need to get my hands on, but I will. I am on a mission to get better.
I am also working with one of my friends to try to buy my Rocephin separately & buy all the supplies separate. I have lyme friends from Facebook that are helping me out by sending me their left over supplies. I can really use extensions, caps, & tubing. If I can collect a lot of stuff, I will just need to get the saline bags & find a supplier for the rocephin 2 gram vials. If anyone knows where I can get rocephin cheap, please let me know!! My friend is working on drugdepot.com right now to see what they can do.
I still need to fight with my insurance company. I have put it off because I am a procrastinator. I am dreading the fight. But I have to fight them. I don't know if I have it in me. Same reason I gave up on the disability fight after 2 denials. Also, my brain doesn't quite function like it used to. I can't concentrate and I forget most of what I am doing or what I just did moments before. I went for a walk last night and didn't remember the walk just about 1 hour later. I thought about it for a while & remembered starting out on the walk & one part on the way back towards the house but I couldn't remember the rest. I can remember it right now though. Strange, very strange.
Friday, December 3, 2010
I have no computer
I found out my hard drive for the laptop is under warranty so I ordered a replacement and should be able to install it. I think. I have phone support, so that will work. Then I'll be back on!
Really quick, I lay around most days. Had 2 good days the week of Thanksgiving (Sunday & Monday). Sunday we celebrated Thanksgiving with Adam's family & Monday my bestie & I went to see my doc out in Beverly Hills. We went to lunch at Urth Cafe. AMAZING organic local food. TO DIE FOR. She wants to go with me to my next doc appt in Malibu so we can go to the shops (window shopping) and maybe eat lunch, walk on the ocean, etc. I love being with her. We were great roommates back before we got married, etc.
I have a lot to talk about because a lot of going on, but I'll have to catch y'all up later when I have time. My husband is almost done with his ice cream cone. Oop, it's gone. BYE!
Thursday, November 25, 2010
Happy Thanksgiving
I have been away from blogging because Rhett, my corw picked the keys off the laptop!! My husband doesn't really let me use his computer much, so I decided to do a quick post while he is watching TV.
Not much has changed as far as lyme is concerned. I am having good days. I had 2 good day recently. Sunday & Monday. That was nice because we celebrated Thanksgiving Sunday with Adam's family & then Monday my bestie Angela & I went to Beverly Hills to my doc appt & ended up going to lunch at Urth Cafe. It was SOOOOOO good. Organic, local delicious food. We ended up getting kinda trapped in the elevators & a little lost, & then locked in the stairwell when we decided it best not to get on the elevator again. But boy that was a mistake, got down 4 floors & had to walk back up the 4 floors & banged on the door until someone let us in. What if there was a fire??? Sheesh!
Anyway, I am DYING to see a natural doctor. I need to add something to my protocol. I need to treat my whole body, not just an infection.
I don't know if I mentioned that my insurance cut me off on November 4th. I was prepared because I think my insurance company was getting suspicious that my doctor was treating lyme. Well, I had InfuSource lined up for $30 per dose IV. So that's $60 a day. Then I get a letter saying that they knew I had lyme & that they were going to retroactively deny me. 183 doses & 20 nurses visits. This was AFTER they had approved. They decided to deny 2 months back. They can do this? The cash price the infusion company charges if insurance is not covering is $95 per dose. You do the math.... $20k is no money I have. We have already maxed out all of our credit cards treating my illness as my insurance had never pitched in 1 red cent until the IV. I am thoroughly upset with Anthem Blue Cross of California. I don't have the mental capacity to fight them, and they know it. I wish I could cancel my policy that I pay nearly $250/mo for, but I need it just in case of an emergency with my PiCC line & if the lyme causes other problems to my organs, etc. There are so many things I need to do, but I have sunken into depression because of all of our financial problems. Financial problems breed other problems. Many more problems. I'm afraid that we will lose everything. If you are disabled by lyme, the government turns it's back on you. I was denied disability twice already. The IDSA is bullsh*t.
Monday, November 8, 2010
Frustration and to be honest, a little fear...
Well, now I'm telling a story. Oh well. Anyway, I just want to be able to get out of the house and on days where I just have fatigue (I can get up & clean & cook dinner in spurts) I want that to go away. The only time I have energy to do anything is at night when my family is ready for bed!
I am just wondering if I am ever going to get better. If I stop the drugs, I'll just deteriorate again & get worse. But my insurance is most likely going to cut me off soon. I also need to get co-infections tested, but I have to pay for that out of pocket & we can't afford it. I just know that if I don't treat the co-infections, the lyme can't go away. The only testing I have had was through the standard labs & you cannot count on them.
I want to try something natural as well, but there are so many things out there and no studies to back what they claim to do. I want to go see Dr. H up in the Bay Area, but he charges $650 per hour! LLMD appointments are usually at least an hour. I feel like the amount of money they charge is unreal. Especially for people disabled by lyme. Knowing that most of our care is paid out of pocket. In the meantime, I will try to save some money to go see a chiropractor in Yorba Linda that does ART (muscle testing) to see which naturals & antibiotics my body needs. She had lyme herself & treats a lot of Dr. H's patients down here. I need to save up $275 cash in order to see her. Oh bother..... Lyme disease is a rich persons illness. You only get better if you have money.
Thursday, November 4, 2010
I missed my doc appt today grrrr....
The pulsing is going well. Last week I started my 2nd pulse. I felt like crap again on the 3rd day, so I assume I was herxing again. YAY. I didn't feel nearly as bad as the first week. That was a kick ass herx! No seizures or anything, but some good pain, weakness, HEADACHE FROM HELL, stomach ache, etc.
Today is the start of my 3rd pulse. I think pulsing is a great idea. I am feeling better in general. Not great, but better. I need to get out & walk every day now that I am feeling better. Should probably jump on my mini-tramp too, but I never know if I feel good enough to do it. My muscle weakness is gone again. I'm not sure if it's 100% gone, but the profound part is gone. I'm still fatigued though because I lay around. When my fatigue is gone, I am up, out & wanting to do things (usually at night). THANK GOD & THE UNIVERSE!
I want to see this chiropractor turned, I don't know, naturopath-type-doctor. She is in Yorba Linda, but she is $275 for the initial consultation. GRRRRRR... money would be nice right about now. If insurance cuts off my rocephin, I'm screwed. Totally SCREWED. I want to see her because with lyme, you need natural aspects, natural treatments & detoxifiers, etc. She also does ART (muscle testing) to see which drugs would benefit you the best in treating your lyme.
Wish this real estate market would pick up........ wish I could get a job........... wish disability didn't deny me TWICE!
Tuesday, October 26, 2010
I herxed!
So I am going back to LA tomorrow to go to Cedars-Sinai to have my PiCC line looked at. I have a valve that is stuck on it & it is supposed to be changed every week. So we are driving out there to see if they can get the valve off without having to give me a new PiCC line. I really don't want to go through a new PiCC line. No thank you.
We are going a bit early so we can meet with a business aquaintance whose office is down the street from the hospital.
Wish me luck! I have to wake up early. Grrrr.....
Saturday, October 23, 2010
Saving Money on Meds
West Aid Pharmacy in Los Angeles has the cheapest of EVERYTHING I have had to get. They have matched Costco & beat Costco when I speak with RJ there. I get generic Biaxin, 60 pills a month for $35, this includes my $15 co-pay because my insurance covers only 14 days. If you have no insurance it may run more like $60. But that is still cheaper than most anywhere. FREE OVERNIGHT SHIPPING is totally awesome. Mine comes by courier because I live in SoCal, but I referred someone to them out of the state & they said they also got free overnight shipping & found the cheapest prices. When I was on Bicllin, I payed $775 plus shipping per 10 doses elsewhere. And that was the cheapest I could find until my doc told me about West Aid. I then paid around $525-$575 (can't remember). I don't know how they make any money but... OK! 1-800-939-9495
If you are in California and are in need of IV meds (generic Rocephin & maybe others), there is a little known place called InfuSource (not to be confused with Infuserve) in Rohnert Park, CA. They beat Infuserve America's price. Rocephin "push": $25 per dose, Rocephin "drip": $30 per dose, Pressurized balls: $35 per dose. The Push is never recommended. Infusing too quickly doesn't do any good. It also ships locally vs flying across the country & so you would save in shipping. They also have all the supplies you need. They have excellent customer service as well. Jan answers the phone & Melissa handles billing & really knows her stuff about IV therapy. 707-588-8894
InfuServe America in Florida is a great resource for Meyer's Cocktails, Glutathione, Low Dose Naltrexone (LDN), Methylcobalamin, IV meds, supplies, etc. I have mostly ever spoken to Rainey there. She is a very nice lady. Their website is http://www.infuserveamerica.com/ Their Methylcobalamin wasn't as potent as the one I get in my experience so I no longer get mine there. Their LDN is more expensive than were I get mine, but they are open to matching prices. They can ship nationally.
McGuff Compounding Pharmacy in Santa Ana, CA. I believe they can ship nationally as well. They are a SUPER high quality compouding pharmacy with very high standards. I think I pay $33 plus shipping for my LDN. I was using preservative free methylcobalamin & I was paying $76 for a months supply (3, 1ml vials 25mg/ml). I was on tiny doses. I had my doc just write me a script for how he would prescribe (I was still doing it my old LLMD's way @ .12mls per day). So now I will do somewhere around 1ml per day & I get it for $26 plus shipping in a 30 ml bottle. CHEAP!! YAY! 1-877-444-1133
You can get syringes much cheaper on Amazon & without a prescription than what you would pay at a pharmacy.
For supplements, you can do a search for that keyword in my google search bar somewhere on the right side of my blog, I list all the big name supps & show what I found to be much cheaper & equivilent.
Friday, October 22, 2010
Pics, FIR Sauna & Pulsing
Wednesday, October 20, 2010
FIR Sauna
Blogspot's photo uploader is down tonight, so I didn't snap a pic. Not to mention I look like crap. So, since I need to drive out to Malibu to go to the doc, I'll have at least bathed & maybe put on some make up. Which reminds me, I need to get to bed WELL before 1am since I need to get up by 8:30am to leave the house by 10am to make it to Malibu by noon.
I hope the doc changes things up. Well, he really has no choice, because I cannot go on like this. SICK SUCKS!
The one I got is the one that you sit in (first pic). I would have liked to get the one that you lay down in, because it seems very relaxing. Like you could meditate at the same time.
Tuesday, October 19, 2010
Detox
A very kind person made a very generous donation through this blog & it came at just the right time. I need certain things to feel better and since mula is tight, it hasn't been feasible. I have gone downhill again, fast. My health can't come before rent, car payments, utilties, bills, kids sports, school, and other activities, so it's always on the back burner. So with this kind donation, I had to choose between buying my supplements or buying things to help me detox. I chose the detox.
Many people have recommended to buy a portable FIR (Far Infrared) Sauna. So with my friends help, I did. It makes you sweat, but differently than regular heat. FIR penetrates deeply into the body & makes you sweat more. Which helps the body to eliminate toxins. So I got a portable one. Should be here in the next couple of days... CAN'T WAIT! I just need to figure out a way to keep my PiCC line area from sweating too much. I think I'll tape a bag of ice to it (I have small gel freezer thingies).
I also bought something else that people swear by, a coffee enema kit. HOW EMBARASSING!! But I am sooooo going to do it. You buy special coffee & the supplies. People say it is amazing. So I am going to do those 2 things & I hope they help. It wasn't very expensive, I got away with a pound of the coffee & a cheap enema kit that I can reuse several times for $14 +shipping. I went through S.A. Wilsons. There is a banner link to their site at the top of my page. And if you order through my link, I get paid 1%! I thought that was pretty cool. I'll let everyone know how the coffee enemas & the FIR sauna go. I am so scared of the enema. I've never done one in my life, but I am D-E-S-P-E-R-A-T-E.
Going to my doc out in Malibu to see what is going on & why I relapsed. Hope my husband doesn't get called in for jury duty that day because there is no way I could drive that far on my own. I don't even go to the grocery store by myself let alone an all day trip. Wish me luck!
Monday, October 11, 2010
Let's rip this thing out.
Now, I need to get in to see my doc. Perhaps we can try a different IV med. But what is out there? And will my insurance cover it? I cannot imagine what more there is to do to help me. But I do know that I can't stay like this. I can't do anything, and I have no way to make any money for our family. I need to get a job! I need mula!
Anyway, my lyme cycle hit today (along with my other cycle). Tomorrow I need to call my doctor to see if I can go in this Thurs.... can't wait anymore. Next appointment isn't scheduled until the 26th.
Sunday, October 10, 2010
UGH!
Still feeling crappy, but I had 2 good days in a row. Yesterday I made it to the last half of my step sons baseball game and today my step daughter & had shopped at Target. I love Target, but I was reluctant to go for political reasons. I betrayed my beloved gays!! Oh well. I love the products & hey, I need to save money! I even went for a 1 1/2 mile walk with my step daughter tonight. I told her I'm getting flabby & since I can't work out anymore (last month was a different story), the only thing I can do is walk. My leg weakness is back, but it doesn't take much to walk. I am going to try to do 2 miles at least 3 times a week. I can't stand what lyme has done to my body.
Oh, my friend from Idaho Trish is in town visiting. Her daughter moved to San Diego so she is staying with me & driving out to visit her a few times. It's nice to hang out with Trish and her youngest baby boo Aaden. Aaden will be 2 end of December. He is THE BEST baby! Rarely fusses or cries & pretty much is happy 24/7. He's lovely. Has been since the day he was born. Aaden was born with down syndrome and so even though he is almost 2, he is still pretty small and is more like a 10-11 month old child, just a bit smarter & was easier to care for. He is a blessing. It's nice to have Trish around. We used to spend so much time together when we were single. She pretty much lived at my house. It's nice to have someone around again.....
Well, I have a doc appt set up Oct 26th, but I think I will be going in sooner. Not sure what is going on, this is the worst month I have had in at least 6 months. 3 good days out of a month is just insane. I am going to attempt coffee enemas if I can get my hands on all the equipment. I am terrified of an enema, but people swear by it for detox. I very well could be toxic. That would explain the constant hangover feeling, but to me, it doesn't explain the muscle weakness that returned. My only explanation is treatment failure. UGH!
Monday, October 4, 2010
Eclipse Home Pump vs gravity drip
Well, Lyme cycle hit, and this time it was a bit worse than normal. But I thought nothing of it. I know my body & I know this disease in my body. I know that yes, the bad days are pretty horrible. I am cranky, irritable, in pain, feel like crap, and almost wish I could detach my head from my body & just put it on ice until it all passes. But this time, after my usual 4 days of torture passed, I started to get worse and worse. It used to take me 3 weeks to pull out of cycle. But with a year of treatment, I was doing 3-4 bad days a month! I can live with that. 12 days passed & I decided that something was just wrong. I felt just about as bad as I did 5 months prior. This wasn't good. Joint pain, malaise, neck pain, headache that felt like my brain was going to swell out of my head, muscles twitches at an all time high, muscle weakness & shakiness, muscle pain & BELLS FLIPPIN' PALSY!! I only get it in my forehead, so you can't tell, but my forehead was numb again!! Only things that have changed were that I ran out of my LDN the past couple of weeks & while waiting for a paycheck, I couldn't refill it just yet. That, and I switched from IV gravity to those darn balls. But it's the exact same meds/solution, just different way of infusing. It takes less time & the Eclipse Home Pump is a ball that is pressurized in a balloon that gives you a steady stream. It's neat because you can just throw it in your pocket or purse & go. It also takes a minute to get it set up versus 10 minutes to set up the gravity.
So I am sick & desperate & consulting with my online Lyme friends to see if any of them had gone through a similar spell while being treated with rocephin. Nope, must be treatment failure. NOOOOOOO!!! I have my insurance miraculously covering all of this, nurse, meds, supplies, etc. I can't have to change to something they won't cover. So I spoke with my Lyme friend Melissa who lives in PA. I was asking her how she was doing. She had gone from Rocephin to oral antibiotics (had to quit because $800/wk was probably killing her) and last I had talked to her (months ago), she was doing well. So I got her update & she is doing great. She asked about me & I told her BAD, I am doing really BAD. I explained any changes, and when I mentioned the ball (Home Pump) she said, THAT'S IT! She said her LLMD (Lyme doc) told her that she is to infuse over a long period of time. I told her the pump went in about 20 minutes & my drip bags take about 35 mins to an hour. OK, that gave me some hope, and my husband was saying all along, "It's those balls that are making you sick!". So I experimented, I had 2 balls left & would have to wait for a couple of days for a new order. So I used the clamp to start & stop my ball so it would last over an hour. 10 seconds on, 5 seconds off. Yes, this was tedious, but this is my health & my life we are talking about. The next day, I woke up feeling better. Was it a coincidence? So I have had 2 decent days since. One day I got out to my step son's first baseball game. And made it to Costco without too much trouble. And today except for the lazy feeling (fatigue) I feel pretty OK. So with 2 weeks being on the ball & now about 6 days back on gravity, either I am recovering from my relapse of symptoms, or I am coming out of my cycle. I may never know.
My Step Son Contracted Lyme Last Week!
On another note. My step son went to the baseball field to practice with his winter ball team & wore shorts. They were just doing conditioning that day. The next day he had a big 'ol bite on his leg. No biggie, just looked like a spider bite. Stuck a little benedryl on it. The bump/bite healed & was gone. Until Sunday. He comes home from his grandparents house & says, "look what showed up where my bug bite was". It was a bulls-eye rash! So I took a pic of the rash & posted it on my Facebook & Twitter asking people what they thought of it. I kind of doubted that it could really be Lyme. I mean, what are the odds? Two of us in one family infected witihin 1.5 years of each other. Mind you, we live in a place that the health department and doctors swear there is no Lyme. Everyone said, "Bulls eye, bulls eye, bulls eye". Then I went online & looked for pictures of Lyme bull eye rashes. Because it wasn't a total Target logo. But here they were exact matches of the rash that were confirmed Lyme cases. SHIT!
So I called the hubby because I was too sick to drive & I said come home NOW & take him to the doc. They get to an urgent care & the doc had the where with all to know a Lyme rash when he sees one. He said that blood tests are not accurate enough & the rash counts just as good as any positive Lyme blood test. He wrote a script for a pathetic 10 days of doxycycline of a low dose (100mg twice daily). Lucky for me, I already knew this boy needs 200mg twice a day for 30 days, not 10. So that's what he is on. He is really tired constantly, but so far that is all we see. He is still playing baseball & the rash started to go away pretty quickly by the next day. I called my lyme doc & he said that's from the doxy doing it's job. Let's hope this cures this kid. It was about 5 days after his bite that he started treatment. He is 14 years old so he is old enough for doxy.
Wednesday, August 18, 2010
Almost 6 weeks into Rocephin
I went to the great doc (I love my doc) in Malibu last week & he said we'd be doing at least another 4 weeks of the Rocephin. He said that all my blood work is fine, so we will continue. I am happy because I know of people that have come a long way with Rocephin. I am especially looking forward to the brain fog lifting. I hope it goes away, or lessens soon. I have barely a short term memory & word recall is terrible. I always say "please hand me that thing" or "put it on the thing" or "I cleaned the thing today". Hubby gets frustrated with it, but he's much better than he used to be. Before we knew what was wrong with me, he used to get extremely frustrated with me & it would cause arguments because I couldn't remember what things were called, or I called certain things by a different name. I haven't been able to take my brain supplements for months as money has been tight, I haven't been taking many of supplements I was. So maybe once I start them that area will once again improve. I will be ordering them all again soon & see if that helps. I am also going to try cordyceps (it's a supplement) to see if that helps with anything as it's supposed to help with adrenal fatigue. I really should start up Lauricidin again to fight all of my viral infections, but it's hard to want to take when it makes me feel worse. And I have plans coming up. Including my 1 year wedding anniversary.
I want nto nnnmnnnmnbnggfgfgfgffffffffvvv
That was my crow helping me type this. I took a picture. I will try to figure out how to post it. I got a new phone & can't remember how I had it set up last time to be able to post pics to my blog.
He was a baby then..... |
One year anniversary of being sick.
Lyme disease is a very lonely disease. It's different than having cancer. Cancer has a proven treatment, thousands of doctors & a government that acknowledges it & treats it. So when you have cancer, it's OK to feel sick. But not with lyme disease. With lyme disease, you are just lazy & bringing all of this upon yourself.
Please make sure everyone in your life wears their bug spray when they go to a park, playing on their front lawn, going camping, hanging by the lake or the river, hiking, gardening, etc. I don't want this to ever happen to anyone else. It's not just a physical illness, your family & friends will bail on you. Plain & simple. I don't know a single person with lyme that this hasn't happened to. As you get better though, they will slowly come back around. But you don't ever forget how they treated you when you needed them most. Sorry, I'm still a little bent out of shape about this. Not having anyone to talk to about what I was going through has been the hardest part. Being locked up in your house every day, 24 hours a day for days, weeks, months at a time with the rarest of visitors or phone calls. I am lucky to have my husband & the support of the people that I have met online. Without my "virtual friends" this journey would have been a lot darker & who knows where I would be right now, if here at all. (I love my dogs. Two of them just came up to me & gave me a kiss). They know I am hurting.
Friday will be 6 weeks that I started 2 grams of IV rocephin once per day. First few days I was sleepy, then I felt pretty darn good. Felt like exercising! Then I was fatigued for 9 days. Then I as fine, but then my lyme cycle hit. I think I am now on 6 weeks cycles. WAY more good days than bad now. Since I started Bicillin injections in November, it has been a slow but steady incline in my health. I am very lucky. Any herxing I had was at the very beginning of treatment and was very minimal. It usually included extreme nausea & feeling like I had food poisoning. My body & head hurt & it was pretty much agony. 1st herx lasted 5 miserable hours. 2nd time that happened it lasted for 2 hours. And then my herxing was diminished to just mild nausea off & on. It usually occurred the day after an injection of Bicillin, so I know that's what it was.
I went to the great doc (I love my doc) in Malibu last week & he said we'd be doing at least another 4 weeks of the Rocephin. He said that all my blood work is fine, so we will continue. I am happy because I know of people that have come a long way with Rocephin. I am especially looking forward to the brain fog lifting. I hope it goes away, or lessens soon. I have barely a short term memory & word recall is terrible. I always say "please hand me that thing" or "put it on the thing" or "I cleaned the thing today". Hubby gets frustrated with it, but he's much better than he used to be. Before we knew what was wrong with me, he used to get extremely frustrated with me & it would cause arguments because I couldn't remember what things were called, or I called certain things by a different name. I haven't been able to take my brain supplements for months as money has been tight, I haven't been taking many of supplements I was. So maybe once I start them that area will once again improve. I will be ordering them all again soon & see if that helps. I am also going to try cordyceps (it's a supplement) to see if that helps with anything as it's supposed to help with adrenal fatigue. I really should start up Lauricidin again to fight all of my viral infections, but it's hard to want to take when it makes me feel worse. And I have plans coming up. Including my 1 year wedding anniversary.
I want nto nnnmnnnmnbnggfgfgfgffffffffvvv
Tuesday, August 3, 2010
Doing my infusion, hubs didn't turn on the flash & we were in the middle of cooking dinner so my kitchen is a mess. |
Flushing the line. You can see the sock on my wrist that I cut for a PiCC cover. |
I have been away from blogging for a while. Every time I start to blog, I get interrupted. But this is a good thing. That means I am not laying in bed all that much anymore. When I first started the IV Rocephin, I was sleepy for a few days. Then I suddenly felt a little better. Had some strange issue after day 4 where my neck & upper chest felt pressure, but it eventually went away. And I even felt like I could exercise. So I did. I jumped on my rebounder (mini-tramp) 500 jumps. I was told not to get into the cardio zone, so I stopped & started. But the next day, I was done. Haven't exercised since & I think I have only spent 1 or 2 days in bed. Today, I had to run up my stairs & I realized it wasn't horribly painful. So I will definitely work out today.
I am very pleased with my home health nurse. He is awesome & so knowledgeable about the world. So he is nice to be around. I am pleased. He used to come every day in the beginning. Now he comes once a week to draw blood & change my PiCC line dressing. That is something I need to learn how to do on my own though in case insurance cuts me off.
So far, nothing drastic has been noticed, but my symptoms have definitely been reduced. I am just waiting for my cognitive stuff to clear up. I would like to be able to recall the names of things again. :)
I also want to go back to do the MedSonix treatment again. As I think it truly was a tool in my recovery. My joints have not bothered me at all since those 3 treatments. And I think I have only had 2 headaches since. And both were very minor.
I have had a yeast over growth due to the IV Rocephin & the Biaxin, so I am on 10 days of Duflican & doubling up on my probiotics (when I can remember).
Tuesday, July 13, 2010
Picc Line
Monday, July 5, 2010
PiCC time
The day of my appointment, we decided to take our 16 year old & one of her friends with us to Malibu. After all, my docs office is literally seconds from the ocean. So we joined the girls at the beach. Where we went to the beach there also happens to be a bird sanctuary. There were hundreds of cool birds. GIANT pelicans flew over our heads. We made some bird friends while we were there. There were a lot of jelly fish that had washed up on shore. We had to be careful not to step on them It was a lovely day. Until we got up to leave. My husband so kindly pointed out that the backs of my legs were FRIED! I forgot to put sunscreen on the backs of my legs!! I am still burned badly & it's been 4 days. I have never burned like this in my life (well except for the time when I was going to college & I went in a bad tanning bed & ended up in bed for 3 days vomiting from sun poisoning). Can you say PAIN?
Wednesday, June 30, 2010
Medsonix
My step-son Evan was walking like he had been on a horse for a couple days so we put him in with me for the first half hour. He started a rigorous baseball practice for All Stars & his legs were super sore. He was walking normal after that & said he felt much better. We kept asking him for the rest of the day because we weren't sure if it was just a placebo effect. At the end of the long night of site seeing that night, he said his soreness was returning a little bit. But by morning he was fine. Hmmmm....
I noticed nothing after my first 1 hour session. I had pain in my legs that night while walking around but we wanted to get in as much of the attractions as we could. Needless to say we got very little sleep for the 2nd night in a row. I don't do well without enough sleep & felt ill when I first got up the next morning for my 2nd appointment, but once I started moving I felt much better.
I forgot to mention that my hips, knees, & hand joints had been really bothering me lately. Started about 2 months ago & had been progressively getting worse. I was in tears from my hip pain 2 days before we left for Vegas & tried to finally plunge into my Ketamine pain meds. I realized they were long expired as they were compounded & the pharmacist said he didn't know what would happen if I took it anyway. So I didn't. I just popped a 800mg Motrin. In a couple hours I was feeling better. But this joint thing is concerning me because it has never been an issue for me up until the last 2 months.
Okay, so hips & knee really bothering me while on my way to 2nd appointment. First half hour I was in with a group of people that go there every Monday & Thursday. They all knew each other & were so friendly! They explained to me how much MedSonix has helped them & why they come. There was a husband & wife there and they brought along his father & her uncle. There was another gentleman that sat next to me that is one of the spokespersons for MedSonix & he was explaining things to me. He used to be the host of Real TV. Remember that show? I loved watching it & still catch a rerun anytime I'm channel surfing & it's on. Everyone was asking about lyme disease. 2nd half hour treatment a nice older couple came in. It was their 2nd day coming. They had come the day before & said it helped them so they decided to come again the next day. I am not sure exactly what they were there for but I do know that the gentleman said that it helped his grumpy disposition. Maybe I should have had my hubby do a session or two ;-) After that session my knee wasn't bothering me anymore. Hips still sore & stiff. But as I walked out of the building to the car, I said to my husband, "Despite little sleep for 2 days & this heat, I'm feeling better!" We went on to site see for hours again that night. Way less pain, again, little sleep.
Woke up for 3rd & final session feelin' good. Did one hour, still feeling great. I was so surprised I was able to walk & walk & not rest at all during this entire trip! Went to the pool for a bit in the heat with my step-son & we sipped virgin pina colada's & margaritas. Then we needed to get our butts on the road home. We didn't want to leave!! Such a great time!
I have been home for 5 days & have been doing great! I said to my husband that I wanted to exercise! I have been having no trouble walking up the stairs or getting off the couch. My joints have not hurt me AT ALL. I do not know yet if it was the MedSonix or the way my lyme cycles. I know this time of the month I am usually doing pretty good anyway. I see my doctor out in Malibu tomorrow & if hubby isn't too busy with work we are going to hang out by the beach for a bit before we head home in MONSTER LA traffic. I should be going back to do at least another session (three 1 hour treatments) of MedSonix next month. I will let everyone know how it goes :) As it is something that you would need to do monthly for a while. I don't think MedSonix is a cure for lyme disease, but I do think it could be a great tool. It reduces pain, reduces inflammation, & increases circulation. It is totally non-evasive. You just sit in front of a box that makes noise. If you don't like the noise you put on headphones that play relaxing music. That's it!
What exactly is MedSonix? http://medsonix.info/
To to their website for testimonials & videos. They have the place in Las Vegas, NV & Naples, FL.
Friday, June 18, 2010
Scarlet saying good morning.
Friday, June 11, 2010
Trying an alernative treatment & my baby crows
I am also excited to get out of town. I have never gone to Vegas without going to the clubs, casinos, & gambling. And since we don't have the money for that kind of thing (nor do I have the energy or ability to party), we are taking the kids! A little family vacay! YAY! So we got a cheap room at The Orleans for $35 a night. Going for two nights & found a bunch of free sites & activities through the Vegas.com website.
My mom is going to come stay at my house to dog & crow sit.
I probably forgot to mention that I saved two baby crows' lives over a month ago & they are still living with us until they can be released during the day & called in at night for safety reasons (West Nile mosquitoes & other predators). That is if I can get them trained. They were tiny babies with no feathers when I found them & I have hand fed them. Crows don't learn to eat on their own until about 2.5 months old, & they are just now learning. But they are a handful so I can't wait for them to be able to go outside for the day (and hopefully come home at night). Wish me luck!
Thursday, June 3, 2010
So far so good with Biaxin
I ordered another 30 days worth of Biaxin from Westaid Pharmacy & paid only $50 for 60 tablets. And they overnighted them to my house FOR FREE. They rock. Nicest pharmacy I have ever called & they are on the ball. So again 1-800-939-9495.
I haven't herxed or anything from this new antibiotic. And I wonder if I will because I am using it to treat Mycoplasma. So far, so goood.
Oh, we did another garage sale last Saturday and I made $517! YAY! Then another $50 yesterday from a donated dryer & I still have a couple of really nice desks to sell. I need to put them on Craigslist. Should get another $125. One is brand new in the box (glass top computer desk). The other is a 3 piece solid wood set. Desk, hutch, & file cabinet.
I still haven't started the True2Life detox yet because I didn't think it was a good idea to start two new things at once. Being that I was starting the antibiotic. So I will have to pick a day to start the detox. Maybe today??
Thursday, May 27, 2010
Bicillin injection - Finding blood!
Okay, this was the first try. Sorry for the F Bomb. But if you find blood, & you inject or forget to aspirate, it can kill you. Means you are in a vein.
My laptop has been down . ..
A recap of the past couple of weeks:
Got sick about 4 days before the fundraiser/awareness walk so I couldn't make it. My husband & his family & a couple of friends went anyway. My dad was out of town visiting his mother & I was feeling so sick that I had my mom come here to take care of me instead of going to the walk. Nicest part of the walk was one of my BFF's learned a lot about Lyme Disease and I think that helped her to understand me more.
I never heard from the walks coordinator after that, so I didn't get any help with my fundraising. Oh well, you win some, you lose some.
So I ended up spending 8 days in bed. That miserable hangover feeling. It sucked. And then we had the garage sale on Saturday. I started to feel better a few days before & on that day I did well. We made $537! It was enough to pay for a month of one of my antibiotics. I need to figure out more fundraisers though because I need many thousands of dollars!! Doing another garage sale this weekend. Not as much stuff, but I am hoping some how some people will donate more stuff by tomorrow.
True2Life donated one of their 8 Day Liver Detox Kits to me. That's cool! I felt great after my last detox. I was going to start today but started having pain in my lower right abdomen. Could be my appendix, so I am holding off on the liver cleanse until pain is gone. Appendix is attached to your large intestine & this cleanse on the 2nd day brings on a lot of bowel movement. So . . .. we wait a bit.
I went to see my doc 2 days ago in his Beverly Hills office. I like him. He's not my LLMD, but he takes my insurance. He's keeping me on Bicillin & adding Biaxin for Mycoplasma. Doing a week trial run to make sure it doesn't cause tinnitus like zithromax did. The tinnitus showed up after 2 days on Zithro & stopped after I stopped the medication (3 days later). It can be permanent & it was very unpleasant. I forgot to talk to him about how to treat the Q Fever which can become chronic also. Doxy? UGH! I couldn't take that. Make me drop weight like a wrestler or a super model.
So we are waiting and seeing. I am happy to be attacking my known co-infections now. Maybe this is the boost I need. Cross your fingers that I can tolerate it. Doc also took some blood work because I have been having abdominal pain & he said I should be having monthly blood draws. I will go to him monthly, which is fine because my insurance pays for it. It's a long drive, but we're going to stick with going to his Malibu office so we can see the ocean at least. It's lovely.
I am happy to report that my Malibu/BevHills doc was able to find me lower cost Bicillin! YAY! I was paying $700 for 10 injections at McGuff. I am now paying $525 for 10 with free overnight delivery via courier to my door! WestAid Pharmacy in LA. The Biaxin was going to cost me $269 at Walgreens but is only $60 at WestAid! Here is their number if you ever want to price them 1-800-939-9495
I hope everyone is doing well. HANG IN THERE!! My headaches are NOT my friend!
Saturday, May 8, 2010
Living
Thank you detox
Thank you Nuriche
Thank you Bicillin
Thank you Dr. B
Thank you Dr. P
Thank you hubs (even though you are a pain in my butt sometimes)
Thank you mom
Thank you to all my supportive friends on Facebook & here on online outer space
Thank you to everyone who told me not to give up
(all in no particular order, just what came to mind)
Now I need to raise money to treat Q Fever, Mycoplasma, Babesia & any other bastards that are trying to kill me.
May is Lyme Disease Awareness Month
We are doing a fundraiser/awareness walk up in Hesperia, CA on May 15th to raise money for myself and a few other "lymeheads" (someone on Facebook gave me that term & I cannot remember who).
I am doing a huge garage sale & asking friends, family & friends of friends to donate items to sell that will happen March 22nd.
My friend Leslie says she will help me to plan a poker party fundraiser. Now that sounds like fun!
And the grand finally. .. . . . . a big huge NATIONWIDE RALLY for Lyme Disease. Date TBA. If you are interested in organizing in your area, please let me know! This is very important & no matter how sick you are, we need your support. Get your friends, you family, your co-workers, your neighbors in on it.
xoxo! To life!!!! Cheers.
Tuesday, May 4, 2010
Saturday, May 1, 2010
Tuesday, April 27, 2010
Paint May Lyme Green!
I have been really busy & feeling really good. Haven't taken Lauricidin since the bad "herx" or whatever it was.
We are working on getting everyone to change their profile picture to a lime green profile pic to raise awareness for Lyme Disease Awareness Month of May. So if you have a Facebook, please do so. There are many ways you can help other than facebook. Please click on the link above that reads Paint May Lyme Green to see what you can do.
Right now we are planning a HUGE - let me repeat - HUGE rally against the IDSA's recent decision. You can read more about the IDSA's decision here .
If you are interested in the rally, please contact me, tell me where you are located & give me your name & contact info. The date of the rally is to be announced. If you are on Facebook, please join our group IDSA Denies Proper Treatment for Lyme Disease so that you can stay up to date on the rally & maybe help organize in your area! The HIV/AIDS victims of the 1980's had to rally & come together in huge numbers to make a change & get proper treatment, and we are no different. Even if you are too sick, you can still have your friends & family attend. No matter what condition I am in that day, I will be there! Even if I have to rent or borrow a wheel chair & be wheeled around. There is no way I am missing it!
xoxo! Feeling good lately. Just wish my muscles weren't so weak.
Wednesday, April 21, 2010
Drum roll please . .. .
Here is what the test said:
IGM Western Blot:
31 IND
39 IND
41 ++
58 +
IGG Result:
31 IND
41 +
45 +
58 +
Multiplex B. Burgdorferi Sample: Serum
(PCR test)
Genomic - B Burgdorferi: Negative
Plasmid - B Burgdorferi: POSITIVE , Confirmed by Southern Dot Blot
Whole Blood Sample:
Genomic - B burgdorferi: Negative
Plasmid - B burgdorferi: Negative
** What throws me is that it says under this last section:
"POSITIVE: Indicates that B burgdorferi specific DNA fragments (plasmid or genomic) were detected in the sample." It goes on to say, "Sample is considered positive if either genomic or plasmid is positive."
I have been feeling quite ill for 3 days straight. I layed in bed all day Sunday, was in & out on Monday and went to dinner with an out of town guest that evening. Then felt really, really sick yesterday. Today was not too shabby. I was able to get a few loads of laundry done & cook dinner. So I wasn't feeling so bad anymore. Having some issues breathing. I just keep feeling like I have to deep breathe all the time.
Just ordered some more Bicillin. This time one of my docs was able to find it for me for $525 including overnight shipping right to my door, nice & cold. Saved us $175 so Hubs didn't have to scrape too much together. I usually pay about $700+ including shipping. So good news. And since this has been my best month yet, the doc said to go ahead and do 5 more weeks of it & then we'll re-evaluate.
Oh well. Maybe we'll do IV later on down the road. . .. maybe I won't have to.
Thursday, April 15, 2010
Wow, it's almost been a week since I posted!
I should have my Igenex test results back tomorrow. Cross your fingers for a positive for me. I don't have a good feeling about it. I sure hope my gut is W-R-O-N-G. I have no idea what move I will make if I am not positive. I guess we'll take a 4 hour ride up to Arroyo Grande, CA & see the ND up there that works with Dr. Harris. Or stick with my regular LLMD. The doc I saw last takes my insurance, so if I am positive. I am GOOD.
Started up the Lauricidin again and not sure if that's what's causing my weakness (herx) because I have been SUPER weak yesterday & today. Other than that, still feeling great. It's lovely. Sleeping like a dream with NO, let me repeat, NO sedatives or benedryl. Just a touch of Melatonin at night. It just makes me yawn within 5 minutes & makes me sleepy. Doesn't keep me asleep. But sleep hasn't been an issue lately.
Not sure if it's the new supplement I started, but this has been the best past 30 days I have ever had. So I ordered more. YAY!
I tested "high" for Mycoplasma. But I don't really have lung problems. hmmmmm...... Tested negative for Babs & Bart. But all were through Quest, so don't know how reliable that is. I don't have the usual Babs & Bart symptoms. That I know of anyway.
You will be hearing from me when I get the Igenex results back. I hope everyone else is hanging in there. :) xoxo
Oh and P.S. I have been off all diet restrictions for the past 2-3 weeks. And haven't had any repercussions (yet).
Friday, April 9, 2010
I'm awake since 2:45am...
But no sleep tonight :( Went to sleep around 11:30pm, woke up an hour later (can't remember why) & then woke up again at 2:45am. I took an ativan at 3am but I'm still awake. And now I'm upset because I woke up hubs for some emotional support (I rarely disturb him) because I have a weird sore throat & headache, & my eyes ache/burn. When I can't sleep because I'm not feeling good, it really bothers me. I should just pray. But I need to get on my knees to be able to concentrate enough and it's too freaking cold in this room.
I got up & went into the office to lay on the futon with a little pillow, little blanket, & my little chihuahua to keep me warm. I guess my sniffling & looking at Facebook on my phone was bothering the husband. He didn't take too kindly to me waking him up. So I came in here. Brrrr... I'm not tall enough or strong enough to shut this giant window.
Sent from my BlackBerry® smartphone with SprintSpeed
Thursday, April 8, 2010
I just don't get it.
Tuesday, April 6, 2010
Oh quick little story. My niece wanted to give me my B12 shot last night and I said ok, since it's only a little insulin needle in my belly. Well, she says, "Auntie, I don't want to hurt you!!" She was nervous, she stuck it in, & immediately pulled it right out. We laughed so hard! So I ended up sticking it back in & let her push on the plunger. You had to be there. It was funny!