Just Breathe...

Trying to multi task major things is quite challenging for someone suffering from this disease, or anyone with any sort of cognitive difficulties.

I don't know where to start except to say I need a break from all this stress but I can't until I tend to several things. I know I'm playing with fire by pushing myself like this and I'm concerned but Chelsea needs my help.

Today is her 8th birthday. Her liver disease is progressing. I've been unable to get her diarrhea under control. She is taking Flagyl which is supposed to help the diarrhea but her prescription ran out on Weds. I've been unable to find a vet willing to refill it (I have refills left on the bottle) without having to also pay for an appointment. I've spent most of the day trying to find a vet as well as some answers. A new symptom emerged for her today. When she burps (severe liver disease causes digestive issues) there is a foul odor. At first I thought someone was cooking something awful then realized it was coming from Chelsea. I know dogs with cirrhosis can have issues with bleeding so I'm worried she has a bleed in her tummy.

I was able to speak with the vet at the rescue organization we got her from. She was quite concerned and wanted me to get Chelsea up to the rescue to she could examine and treat her. This vet is the one that saved Chelsea's life 2 years ago so I trust her. The problem is it's about 90 minutes away and I can't drive anywhere near that far.

I spoke to the vet that is currently treating Chelsea who said to take Chelsea to an animal hospital. She gave me some names of vets to ask for. She also told me to NOT go to a vet hospital near me.

I spoke to a third vet who used to treat my dear, dear Katie girl who died 10 months ago. He was also concerned and suggested feeding her boiled rice, boiled chicken breast, and cottage cheese. I've never boiled chicken before and the though of it sounds gross. I'm not a meat eater and I won't even deal with meat because it grosses me out. How do you boil chicken? I'll look it up.

The one vet said to keep her on the liver disease diet or else she will go downhill but the other vet said if she's not able to digest the liver disease diet it's doing no good for her anyway so I'll get the ingredients. He said the diarrhea needs to be dealt with because that can cause her to go downhill.

It's stressful and heartbreaking. I'm doing everything I can to fight for Chelsea but I'm limited physically. For example, I'm not feeling good because of running around today but I need to go back out and get the food for Chelsea. I know she doesn't have a ton of time left and I want to make sure she has the best quality of life that she can.

I've also been applying for various types of aid such as food stamps, medication assistance from Medicare, and Medi-cal. I didn't realize that when I moved I was just over the County line which means I'm living in another County. This ended up being a good thing because I filled out applications on the computer and 2 days later I have 2 huge packets to fill out as well as get tons of documentation.

It's like writing 2 more dissertations. I also had an appointment for an eligibility interview for this Monday at 8:00 about 15 miles away. I ended up having to cancel it because I can't drive. I'm hoping they can do the interview over the phone. I need the food stamps and considered taking a cab but it would cost over $100. I need the food stamps because the amount I budgeted for food isn't going to be enough.

I have to have all the information filled out and have that and the documents to them in 8 days. I need to apply for disability transportation also.

I'm forgetting things so I'm trying to write everything down but if the notebook is in the other room I forget what I was going to do once I get into the other room.  :  )  

As the stress continues (it's been 7 months  now) my brain functioning is decreasing. I can't afford that because I have to be able to remember what I'm told when I talk to a vet, or a case worker, etc....

Physically I'm doing remarkably well considering everything but each week I can feel my functioning slipping. I can't let myself get to a point of being bedbound again but I don't know that I have any other options but to push myself so I can get everything done and get Chelsea the help she needs.

I'm at the full dose of Zith for the CPN. I'm also at the full doses of Transfer factors' and am tolerating everything really well. I wish I could take the Azithromycin everyday because I feel better when I take it.

I got lab work results today and my immune system is getting worse. I don't know why. I haven't been too concerned about it until the past couple days. I've been having chills and night sweats along with a sore throat. Thankfully the sore throat is gone today.

My red blood cells are doing something funny. It looks like I'm on the edge of being anemic. That doesn't really surprise me considering all the bleeding I was having. Knock on wood that is better. But there are other things going on with my red blood cells that I don't understand. I need to find an immunologist probably sooner than later. I don't want to risk getting another infection and having that be the one that sends me back to being bedbound.

My sleep is good but my appetite isn't.

I like where I live. Everyone is so nice. There is a pharmacy near me. Yesterday I went to pick up some medications only to find out that they accidentally gave one of my medications to someone else and it was charged to my Medicare plan. They were great about resolving the situation. It turns out that someone else has my name including the same middle name! Even though where I live now is urban it has a small town feel in that everyone is so friendly.

I sat down (or rather laid down) to write a completely different blog post but my mind went blank so I ended up with this one. I'm rambling now so I'll stop here. I'm deeply exhausted. I don't think I can go out again. I have to for Chelsea.

Treatment Update

I started Colustrum (Kirkland brand) last week as well as Transfer Factor Plasmyco and added in Zith to the Minocycline for the CPN. I started the Transfer Factor (TF) at 1/5 the dose and then quickly moved up to 1/2 pill on Saturday.

I was already feeling crashed from everything but when I woke up yesterday morning I felt like I'd been hit by a big truck. It lasted all day. I was hoping this wouldn't happen until I had everything unpacked and settled. I still have a lot of sorting and organizing to do.

I think it's a combination of ramping up too quickly on the TF and crashing. Today was better. I stayed in bed most of yesterday and today except to take Chelsea out. I'm trying to pace myself with the move but its difficult because I want everything to be finished.

For anyone who doesn't know anything about Transfer factors here's a little summary: Transfer factors are tiny protein molecules that are produced by immune cells called T-cells. It allows the immune system to remember conditions for which immunity has already been established. When a person has been infected, for example, with chicken pox in childhood, their body develops a memory of that illness, and prevents the person from becoming re-infected with it later in life.


Transfer Factors are normally found in all of our immune systems. They are tiny molecules much smaller than antibodies and serve as messengers for the immune system’s other major type of response, the cell-mediated response, which involves white blood cells (leukocytes and lymphocytes).

Transfer Factor has been likened to sending your cell-mediated immune system to college. They can educate or modulate a person's immune system, teaching it to recognize specific antigens and communicating the knowledge that they are present.

It (Transfer Factor) won't cure my infections, but when made with specific antigens seem more efficient at educating the immune system than non- specific immunomodulators. 

My doctor prescribed two Transfer factors: one to target mycoplasma and chlamydia pneumonia and the other to target lyme.

I feel the combination of Colustrum and Transfer factor are helping. I'm not even up to a full pill for the TF and I haven't started the one for lyme yet.

Today I ramped up to one full pill of Zith. Within an hour I noticed less cognitive difficulties (they've increased from all the stress) and feeling better overall. At one point, though it didn't last, I felt perfectly normal. It was a great feeling.

I'm continuing to feel hopeful about getting more improvement. Maybe even a big jump in improvement which would be awesome.

The muscle spasms have mostly resolved although a couple hours after taking the Azithromycin today I noticed a mild version in my right leg as I was getting up (and also the bottom of my right foot).

I'm worried about money but am trying to trust in the Universe that it will be okay. I need to figure out a way to bring in an extra $300 per month. I'm applying for research studies in the hopes of making a tiny bit of extra money. Every dollar counts now.

The painful part of my life right now is Chelsea. Saturday and Sunday were difficult days for her. She was lethargic and clearly didn't feel good. I was feeling panicky because she's a big dog at 78 pounds. There were a couple times that I couldn't wake her. It scared me and made me realize how much in denial I've been in regarding how painful the loss of her will be. She's such an integral part of my life now that I can't imagine being without her. I also felt very alone. There was no way I could lift her if she was in trouble. She even slept through her dinner time which is highly unusual for her (her nickname at the rescue was 'Miss Piggy'). 

I was also panicking because I knew if I had to bring her to the vet hospital I would not have enough money for rent.

I need to start interviewing people who can help out during those times when I'm crashed and unable to attend to all the activities of daily living. I need to get that lined up sooner than later.

Other than that I'm doing okay. 

OMG the muscle spasms!

The muscle spasms are occurring at least 1-2 times per hour. Every time I straighten my arms out or get out of bed I get either muscle spasms, muscle cramping, weakness, or just plain ole intense muscle pain.  I tried getting out of bed a little while ago and a spasm started in my left leg. Any movement makes it worse so I had my leg bent in the air because it hurt too much to try to straighten it.

I heard back from my doctor who said its lyme and/or the other infections I'm treating (cpn, mycoplasma) that are causing the spasms. My whole nervous system is responding. It makes sense to me because they have really increased this week as I ramped up the antibiotic protocol. I'll tough it out. It's just good to know what it is.

I received my Colostrum today. I ordered the flavored one thank goodness. Luckily its liquid so I don't have to worry about crushing pills. I took my first dose a few hours ago. It packs a punch. I'm already starting to experience die off-red, burning gritty eyes like I have a fever, increased muscle spasms and achiness along with a slight sore throat and swollen lymph nodes.

I need to start one of the Transfer Factor's tomorrow because its supposed to help my immune system so I'll start the one for myco at a very tiny dose (according to my doctor).

I need to go to the store and have a document notarized but I have no energy

I'll be so glad to get through whatever is going to happen with this apartment. The landlord won't take my calls nor will he return them. I still don't have a key to the door. I also need his help with letting Comcast cable gain access to two garages. They are coming out again on Saturday. This will be their 3rd trip out here but nothing's going to happen if the landlord doesn't cooperate.

I plan on starting to blog on my Jung blog a lot more now that I have access to all my books again. It's my favorite subject (?) to write about and study. It helps my Soul and helps deepen my sense of spirituality.

A Different Life

I missed ME/CFS awareness day because I was moving. I moved in to my new place Friday. I haven't had internet or tv since. Last night I noticed I was able to log on to the internet for a very short periods of time (about 10 minutes at the most).

As I was being driven over here by my brother-in-law I couldn't help but reflect on my journey in September 2010. My then partner and our two kitties all drove out to the house we had just bought. I was laying down in the back seat because I didn't have the energy to sit up. I had my beloved 17 year old kitty on my chest. I was filled with so much hope and excitement about the new house and all the possibilities. And then there I was 18 months later with no partner, no house, the kitties both died. I was well enough to sit up for the ride and I had our dog next to me.

I like the apartment although I'm beginning to be concerned about mold. I'm having quasi vertigo like symptoms again. It could also be from the fact that I added in Azithromycin last night and also because I restarted the Neurological Health Formula. That part of the methylation protocol affects me the most. I started at 1/4 dose on Saturday. It's also been an incredibly stressful 6 months so I could be crashing. But mostly I'm worried about mold. That would be disastrous for me.

I'm also experiencing muscle spasms in both legs and at times my neck and left arm. I have no idea what's going on. It's not related to my back as I'd originally suspected. The spine surgeon showed me pictures of my recent MRI and said though my disc is bad it doesn't seem to be pressing on any nerves. I've been taking a muscle relaxant 3 times per day for awhile but its no longer effective. The muscle spasms are quite painful as well as incapacitating. I think its related to problematic mitochondria. I've been walking more than normal lately and after a few minutes both legs become weak and my muscles start cramping up. I've emailed my doctor to see what he thinks as well as what I can do about it. It's not related to a lack of magnesium or potassium.

Back to the apartment. I like the apartment a lot. It's older and has few electrical outlets. It's a small one bedroom but just the right size for me. And its really expensive. Unless I'm able to bring in about $400 per month the most I'll be able to live here is one year so I'll be doing research on where to go next. The most important thing for me was to get my own place. I really like the neighborhood. Everything except doctors and a hospital are close by.

There's a quirky maintenance guy who I like but he's very homophobic and was going on about how stupid it was for Obama to say he supports same sex marriage.

The owner is a jerk. An utter jerk. When I was offered the apartment by his secretary (he was sitting right there reviewing my application) I told her I had a dog-a golden retriever. She asked how much she weighed. I told her but I minimized it. When the owner saw me with the dog he got quite angry and threatened to raise my rent, up my deposit, or have me or Chelsea leave because they don't allow dogs. He was supposed to come by and repair one of the electrical outlets that isn't working. He and his girlfriend drove up to show another apartment. I tried talking to him about the broken outlet as well as the fact that I still don't have a key to the front door. The guy wouldn't talk to me! His girlfriend had been friendly before was cold. I apologized even though it was not my fault. I've never had problematic landlords like him before.

What the landlord doesn't know is the people living next to me have 2 dogs. The large pit bull tried to attack Chelsea last night. The guy had to physically restrain his dog. So that makes me nervous.

The landlord has still not repaired the outlet and has not given me a key to the front door even though I've asked him 4 times now. If I hadn't signed a pet agreement where I also stated I have a golden retriever he would have kicked me out. This I heard from the maintenance guy.

If I find a great place soon I'll be moving. I think he will have no problem with me breaking the lease.

Although I like the apartment a lot its not worth it for me to stay here if the landlord will not do repairs or even something simple like giving me a key to the front door. He also refused to write a letter authorizing a cable/internet company to turn on the line. I can do without cable tv but I must have the internet. His secretary was kind enough to write the letter and signed it. There are other problems but I won't go into those.

I don't know when I'll have internet again and hopefully I'll be able to publish this post. There is a starbucks about 2 blocks away but my legs won't make it that far. They are just too weak right now. I'm having to walk Chelsea to grass about 1/2 block away 4 times per day (at least) and I think that's taking a toll on me. The mitochondria can't manufacture enough ATP to keep up with a slow walk. I'm concerned I'm going to need a wheelchair or scooter to get around. I wonder if they (mitochondria) are being clogged up by toxins.

I'm going to try posting this now. Hopefully I'll be back soon...

Treatment Update

There are many things to talk about but I'll keep it limited to treatment updates with the exception of one thing. I FOUND A PLACE TO LIVE!!! It's quite expensive which means taking a big chunk out of savings each month but they'll accept my dog and it's in a relatively central location. I think its going to be an interesting experience. The landlords seem to be a bit unorganized and quirky but very nice and likeable. They remind me a bit of the woman in Tales of the City (for anyone who saw the show or read the books).

I had an appointment with my ME/CFS doctor today. He is excellent-I'm so impressed. We went over my most recent labs from January. He had wanted to do more immune testing to see if the previous labs were an isolated incident or whether I do indeed have immune dysfunction.

The test showed immune deficiency in 2 subclasses which means I qualify for another diagnoses (IgG subclass deficiency and possibly Common Variable Immune Deficiency). My doctor said that normally in ME/CFS the immune system testing shows an immune system in overdrive but mine is the opposite. He said that the levels were low enough that they need to be treated. Normally treatment is Intravenous Immunoglobulin (IVIG) but its expensive and insurance companies won't pay for it. We're going to try to treat it with Colostrum and Transfer Factor. What's interesting to me is these levels were normal last February when I had them tested. I do need to treat this because I can't afford to risk getting infection after infection. I have enough infections already.

My CD57 has dropped from 96 to 44. My doctor said this is a reasonable indicator of lyme (in addition to clinical presentation). He thinks lyme is a factor that needs treatment. Luckily Minocycline also hits lyme. He also believes that lyme is in my spinal fluid and one of the factor's involved in the back pain. This makes sense to me because 1 week after starting Minocycline was when the back pain started up again.

We talked about how I've been unable to drive on the freeway likely due to POTS. He wants me to try sitting up for awhile to see if I get woozy. If so a medication called ProAmatine (aka Midodrin) which should help.

He is still concerned about my colon and wants to try another go around with Xifaxan but at a higher dosage for a longer time. If Medicare won't pay for Xifaxan then he'll prescribe something to treat parasites.

One thing I've been worried about in terms of moving is mold so I asked my doctor (who did a presentation with Shoemaker) about it. I asked about the 'dreaded genotype'. He said to not put much stalk in that but to be careful. He also said that Shoemaker did research regarding mold (no surprise there) that showed there were about 12 molds that make people sick. I didn't ask which ones. I was able to let go of a lot of the fear about living in an apartment. I don't want to repeat 2009 when I was bedbound.

Although I want to try gcMAF I can't until I get some of these infections under control. The bacterial infections I have are Chlamydia Pneumonia, Lyme, Bartonella, and possibly Mycoplasma Pneumonia. I have two chronic viral infections EBV and HHV-6.

There's a lot of work to be done but I'm feeling a bit hopeful that I'll get more improvement upon treating a few infections.

I saw the spine surgeon Tuesday. The neuro exam showed I have no achilles reflex which means the S1 disc is pressing on the nerve that controls the achilles reflex. I had my MRI yesterday and will see the surgeon again on Weds. I'm hoping he won't say I have to have surgery. The physical therapist cautioned me stating it could lead to foot drop and/or other symptoms which would mean a trip to the ER and a fusion. With my immune system not functioning very well I don't want any surgery due to the risk of infection.

It's nice to be finished with the housing search. That has consumed most of my time. I haven't been able to keep up with anything. Next week we'll move the rest of my stuff over. My dad will be here Weds through Sunday. I'm so glad I get to see him again.

I've been struggling cognitively today (it was a busy day for me) so pardon any spelling and/or grammatical errors or sentences made up of 5 words.

The Housing Dilemma

Still no progress regarding housing. I'm surprised it's taking this long but when I think of all the needs I'm trying to balance it makes sense. Finding housing is no simple task for anyone much less someone with a large dog, a chronic illness, unable to drive on the freeway, and mold sensitivity.

I've been utilizing various housing search engines. When I find something that looks like it fits most of my needs I google the address and/or the name of the apartment complex. It's amazing how many apartment complexes have mold problems. Luckily I'm able to find info in apartmentratings.com.

Because I can't pay that much for rent I'm limited to looking at low-income apartments. These seem to be the worst offenders in terms of mold, roaches, rats, and bedbugs. I'm hoping something without mold etc...will become available soon.

It's also challenging trying to balance all my needs and nonnegotiable s.  I can't be in a place that has mold or pesticides. I need to be close to shopping, medical facilities, and near places I can socialize.

I'm trying to figure out where to live. Do I stick with what is familiar? That would mean taking close to $500 out of savings each month. No matter where I live I'll have to take money out of savings but I'm trying to keep it below $400.

Or, do I move to a more affordable location 2 hours away? I can't quite imagine being in a city not knowing anyone. I worry about all the medical stuff that can go wrong. I'm still not out of the woods regarding colon surgery and my back is the worst its been since having back surgery in 2006. As I was getting out of bed yesterday I had another muscle spasm all the way down the back of my right leg. It hurt so bad and lasted quite awhile. I couldn't move. When I was finally able to get out of bed I could not straighten my leg again and my calf was still spasming. Later on I had tingling on the bottom of my left foot. I tried laying on the floor to do my physical therapy stretches but the area where the disc protrusion is hurt too much. I'm unable still to do my physical therapy exercises. And then today was another bad episode of bleeding. At least I'm not as freaked out as I used to be. It's still unnerving though. I see my GI doctor next week and the spine surgeon May 1.

I feel like I'm processing a lot of stuff. I'm having a difficult time adjusting to how limited economically I am. Before I got sick I thought nothing of spending $200 on a pair of jeans. It's hard to accept that I can't just go out and earn more money so that I can afford to live where I want. I'm struggling to accept a lot of things. I don't know that I'll ever be in a relationship again. I don't know that I'll be able to have another golden retriever once Chelsea goes. I have a car that needs transmission work and has an oil leak. I still feel sad about all that has happened. So much has happened in 5 years. So much loss. At times I go to very dark places so I decided to seek help from a therapist. I don't know how long I'll be able to be in therapy but I think its important to start. The only reason I didn't start earlier was I thought I'd find a place months ago. I'm also trying to find someone who will prescribe me antidepressants. I've decided to see someone I saw a few years ago right as I was getting sick. She specializes in treating people with complex medical issues and mood disorders. She doesn't accept insurance so it will be out of pocket but considering the alternative...

Right now I have Medicare as well as Cobra (at $957 per month) so I'm able to see doctors and have procedures without paying a copay but I get scared when I think of relying solely on Medicare. It's crazy that some politicians want to cut Medicare even more. I won't be able to have many preventative tests, or vision, or dental coverage. I'm having trouble accepting that I won't have good quality medical care unless I get lucky.

I have a car that needs transmission work and has an oil leak. I can't believe I'm stuck with a retired cop car that leaks when it rains! It was supposed to be a temporary solution when we bought the car a couple years ago.

The one thing nice about the retired cop car is that when I drive with Chelsea in the back seat head flung out the window to capture all the wonderful scents, people often smile. Here's this cop car barreling down the road with a grinning golden retriever in the back seat thoroughly enjoying herself. I find myself smiling back. It's nice to be able to make people smile. On the other hand if I'm in a hurry to get to a medical appointment and the car ahead of me thinks I'm a real cop, they slow waaay down so as not to get pulled over. While I often chuckle to myself it can get a bit frustrating. What's satisfying about the cop car is sometimes when someone is tailgating me I'll pull over to the side of the road to let them pass and then quickly pull in behind them. Watching THEM slow way down is quite satisfying.

There are a lot of people posting on craigslist trying to lure others into their latest scam. I got so frustrated at responding to various ads only to find out from their reply that it was a scam that I looked up the local FBI office's phone number and would include that in my emails to the scammers(the scams became easy for me to recognize).

My ME symptoms are relatively stable. I still have lots of symptoms but they aren't primary. I have gone down a notch in terms of functioning but that has more to do with extended stress, an epidural, and starting Minocycline. I'm doing remarkably well considering but my life is still very limited. I'm up about 12 hours a day and some of that is spent laying down but I'm able to much more than I ever have since getting ill. I hope that continues. I've socialized more in the past 5 months than I have the past 5 years. That part has been great.

I'm still focusing on changing my food habits. I'm making progress on that. I've purchased almost everything that has been recommended to me by the holistic/integrative nutritionist person who is getting her M.A. I'm extremely grateful for her help with food. It's a major undertaking with me. The next project will be to have a list of 4-5 lunches, dinners etc... that I can have as fall back menu's when I'm not feeling well. She has also recommended some excellent kitchen items that will ultimately save me money, time, and energy. It's a bit of an investment up front but well worth it in my mind.

Updates 2

I think part of what was going on last Friday is due to die off from the Minocycline. I got some feedback from a cpn message board that said some people get depressed early on in treatment due to die off.

But it only accounts for part of what I'm feeling. It's been a long, hard 4 plus years of being sick. A lot has happened and I think it has all caught up with me.

I am looking into trying Cymbalta. I've had bad results after trying a very low dose of Zoloft and then with Prozac. I can't tolerate SSRI's anymore. I think Cymbalta is an SNRI so hopefully that will be better tolerated.

My level of functioning is starting to decrease. I'm hoping its from the Minocycline rather than starting a relapse. I have that gritty, burning eye thing going on. By evening my eyes feel like I have sand in them and they usually turn a bit red. Has anyone else had this? I'm also sleeping 11-12 hours and waking up with that exhausted I can sleep forever feeling. My brain has been feeling thick the past couple days.

I saw my GI doctor Monday. He said things are looking better. He wants me to start doing a taper next week to slowly go off the hydrocortisone. I had another bad bleeding episode yesterday which is curious since things are improving. The bleeding has to stop because that alone could warrant surgery. I'll do anything to avoid having this surgery.

I've been having symptoms of disc problems in my lower back at the L5-S1 level. A few days ago I stood up after sitting and could barely take one step because the back pain was so bad. I had to wait until the pain subsided before I could walk. Last night after doing my back stretches I tried to get up from the floor when the back of my thigh and calf went into a muscle spasm. I could not walk and could barely straighten my leg out to stand. I'm also having an increase in sciatica symptoms.

I saw a doctor today about my back. I'll have another epidural injection this coming Weds. Hopefully that will work but its only a temporary fix. He said my symptoms are due to the disc being bad.

I'm still taking things one day at a time. It's difficult not being able to find a place to live. The supplements for Chelsea's liver cost $80 per month and she's on a special diet for her liver which is also expensive so I have added expenses to consider. I can't afford it but I can't bear to give Chelsea up especially since its unclear how quickly or slowly things will progress. I have an appointment on the 30th to redo her labs to monitor her liver.

I would like for a few good things to happen soon. I sorta need it.