Monday, May 21, 2012

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. 

Wednesday, May 16, 2012

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.

Tuesday, May 15, 2012

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...

Friday, May 4, 2012

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.