Tuesday, July 29, 2008

Can I start again Please?

It can always get worse. I got my letter of denial from SSDI today. Even though I know they deny 80% of people who apply for the first time, I was still shocked and panicked. It was 2 page letter that ended with "we have concluded that your condition should not limit your ability to work."

Huh? That's one of the craziest things I've heard.

The next step is to get an attorney and file an appeal. I have 60 days in which to do so. It's overwhelming though. I spent some time researching attorneys. The crazy thing about this whole maddening process is that it take energy and a good mind to do this. I have neither right now.

What I'd really like to know is can I start again with this life?

Yesterday I saw a medium who's name is Bill Coller. It was a trek to get there-over an hour's drive. I spent the drive laying down listening to relaxation stuff on my ipod. We were late. Bill was flipping through the channels of the large screened tv when I got there. Somehow that was comforting. He's from Scotland and his accent too is comforting. He isn't a psychic but a medium so what he does is act as a medium between the "spirit world" which consists of those whom have died and this world.

We settled in the room. He said that my mom was there along with my grandparents (her parents) and my dad's mom. He also said that in the background was an uncle in my mom's side like a brother to her. He said "so we have a big group in here."

He started off by saying my mom is with me and wants me to know I'm not alone in this struggle and that I've really been struggling. It feels like pushing water uphill. That made me break down in tears just hearing that she's with me and that "they" recognize how alone I feel in this. It's not that people are abandoning me or turning their backs or not believing I'm ill. It's just a very lonely struggle.

The focus from out of the blue was my health. Bill said my mom wanted me to keep exploring/investigating all avenues. She also said that I know what is going on but I'm not accepting or believing it. He went on to mention something about a malaria like illness, asked if I'd been bitten, asked about parasites-all consistent with lyme/babesia. He said my mom said I've been going on a hope and a prayer type attitude with this illness but it's time for that to stop. I need treatment. And herbal treatment/homeopathy is "too soft" a treatment for this. Also, that I need to pursue it aggressively because waiting could cause this to affect my organs. He said it reminds him of a type of situation in an old John Wayne movie he saw where a soldier was cut in battle. The doctor applied tree moss to his leg but the soldier didn't feel it was necessary so he stopped the treatment. Because his leg wound went untreated he needed an amputation. Thus, the need for me to not give up and sit idly letting the doctor's figure it all out. There's more but my brain is tired.

We stopped by my sister's house to see my dad and LuAnn. Both my sister's and my dad also saw Bill yesterday. It was great to see everyone (except Liz who was elsewhere). I saw my sister Cathy's house for the first time. It's absolutely beautiful. I'm so happy for her.

I saw my dad and was shocked at how pale he looked-almost white. It's clear he's been through a lot physically (7 catheter's in 6 days, 5 trips to the ER). I'm worried about him. I'm grateful they made the trip down here prior to moving on August 22. I miss him already though and have spent the better part of the day crying about that. We also talked about the reoccurence of his prostate cancer. His old urologist had misdiagnosed him for the past 18 months so his cancer has gone untreated for that long. Another doctor to add to my list. He is in treatment now with his new urologist who started it immediately.

I was still kind of processing everything today when I got the letter from ssdi.

When is enough enough? I am tough and strong and have survived a lot already but today I found myself asking when is enough enough? Things may very well get a lot worse with no guarantee;'s of getting better. Do I have what it takes to bear it all? Most days I know I do. But there are some when I think can I go now? Can I submit my resignation now? I don't like what I see ahead of me.

Of course I'll go on. I'm a fighter. I get from both sides of my family. How can I not fight? Haven't we all had enough tragedy? Don't I get to say no to more?

And to think that I'm just one person among so many people who suffer as much and more than I am. The amount of pain in this world is astounding.

Friday, July 25, 2008

The Dreaded Genotype

I got some test results back bringing with them more bad news. One of the tests is called an HLA DRB, DQB Typing. It's one of the tests they do for transplant patients and doctors are finding it useful for dealing with chronic illness. It's also used to indicate disease severity.

I have the dreaded combination of a certain genotype along with low MSH levels meaning at the most basic level that it's going to be really really hard to get well. In fact my body cannot effectively eliminate toxins on its own. There are certain genetic susceptibilities that some people have towards mold, lyme, and other toxins. Some people have no susceptibility, others have some towards just mold or just lyme while others, like myself are what's called "multi-susceptible." It's literally called the dreaded genotype. There is a medication that can help eliminate toxins called cholestyramine but it's not a guarantee.

MSH is an anti-inflammatory, regulatory hormone made in the hypothalamus. It controls the production of hormones, modulates the immune system, and controls nerve function too. MSH deficiency causes chronic fatigue and chronic pain. Any illness that begins with excessive production of pro- inflammatory cytokines will usually cause MSH deficiency. This is the basic mechanism that underlies damage caused by exposure to biologically produced toxins neurotoxins (biotoxins) made by invertebrate organisms, including fungi (molds), dino- flagellates (ciguatera and Pfiesteria), spirochetes (Lyme disease), blue-green algae (Cylindrospermopsis in Florida and Microcystis all over the world) and bacteria, like anthrax.

An MSH level below 35 is consider low. Mine is 12.

My neutrophils are high, while other white blood cell counts remain low. My red blood cells are doing something that I don't understand. Maybe I was just dehydrated that day.

Two other tests MMP-9 and C4a levels were high normal so that means the inflammation in my body isn't horribly bad.

I had the CD57 panel done which is related to lyme and one's ability or tendency to relapse. I don't quite understand the numbers but basically they don't look too bad so I'm thinking that I was probably bit last year while in Guernville. I think if the levels were much lower (they were low but not terribly so) it would have indicated a more longer term lyme infection.

Now I'm just waiting for the babesia test results. I speak to my doctor on 8/6. I wish it were sooner. I'd like to go over the test results with him.

A bomb exploded in my body wreaking havoc in it. There's a lot of work to be done.

I'm still feeling piss poor and the heart palpitations, weird chest pressure, and dizziness are all back. They are all symptomatic of lyme so it could be part of the herxing. Or maybe I'm going to drop dead of a heart attack soon. Who the hell knows anymore? My acupuncturist kept making these veiled hints about heart attacks which always freaked me out.

Speaking of. I had given up on getting a returned phone call from them but they left a message on my cell phone saying something like " there is information that John really wants you to know about your treatment." Given everything that's been going on with me a message like this kind of freaks me out so I called back. I got a promise I would receive a returned phone call today. Nothing. I realize I don't want any information from them anymore. He's had too much power in my psyche and listening to him got me nothing but more ill.

Last night I dreamt about Lewis Carroll and Alice in Wonderland. I've fallen into the rabbit hole...

I have to say this is really hard. I believe that the depression is part of the lyme (it's definitely part of babesia) infection especially since it's in my brain. But there are moments when I am just praying for the strength to get through the next moment.

That's not to say that's how my day is all the time. I do have wonderful moments, especially when I see hummingbirds.

It's hard to live with a chronic illness that leaves one housebound. It's the hardest thing I've ever done.

Which reminds me of something I've been meaning to post about for quite some time. I've gotten some strange feedback that this blog is depressing. If you find it depressing then don't read it. I'm not writing to make anyone feel better. I'm writing because I need to. I write for the thousands of people out there who are isolated with an illness like this. If I read this blog I would feel relieved that someone is being honest about what this is like, especially the first year.

This society had zero tolerance for suffering. When someone dies usually you find someone saying how is so and so doing? The other person might respond with really good. Well, the definition of really good usually means they aren't crying, feeling, struggling, railing at God. It usually means they are "positive", strong, stoic. It's bullshit. Real strength lies in feeling ones' feelings, the awfulness of them. It means recognizing the beauty and cruelty of life. Life contains both.

This blog will be real. I refuse to sugarcoat anything. When I feel good and strong and positive and if I feel like writing about that I will. As Martha Wainright said in her song "Bloody Mother Fucking Asshole" "I will not pretend I will not put on a smile...I will not say I'm alright for you"....

Tuesday, July 22, 2008

Almost Made It...

I owe phone calls and emails but instead I'm using my energy to write here. I'm having a lot of neurological symptoms and writing here is easier somehow. I have my ipod on listening to calming music.

I've reached a new level of feeling ill beginning Friday. It was horrible on Sunday. So badly that I stopped all medications, supplements- everything. And then left a message for my doctor Monday morning.

Saturday morning wasn't so bad until I took one of the methylation supplements-the neurological health formula. Within 90 minutes I developed a bad headache and went downhill from there. I was scared on Sunday. I can't describe the feeling. I felt (and feel again now that I'm back on antibiotics) a headache, weak, beyond fatigued, confused at times, woozy at times to the point of feeling faint, lack of appetite. Those words don't do the feeling justice.

So I stopped all meds. This morning I heard back from my doctor who said "we're on the right path. Keep taking the anti biotics and Anti Babesia Herbs. Stop the methylation supplements for a couple weeks." I was feeling a tiny bit better until a few hours after restarting the antibiotics.

In spite of it all I tried to go to a lyme disease support group meeting in Berkeley. Even though getting dressed and walking the short distance to the car left me feeling faint while also breaking out in a sweat. Luckily I wasn't driving.

We made it to Berkeley. I walked into the building feeling woozy, my gait unsteady. I couldn't go in the elevator because of this horrible fear of getting stuck. The fear is unmanageable at this point. I decided to use the stairs. The sound of the door slamming shut behind me as I tried to make my way to the basement made me jump. I saw some chairs and sat it them. All this time I'm trying to figure out if I should try to push myself or not. Even though my body was clearly sending me signals that it's not the right time to be out of the house. I found the conference room but walked by. I sat again in some chairs then decided it was too much and started to make my way back towards the front door. But where was the front door? I got confused and lost in a different way than before. I made it out of the building, got in the car, and burst into tears. I don't like this one bit.

The only good news is that the antibiotics are killing bacteria. How long this will last I have no idea. It's frightening. In the meantime I wait for more test results that will hopefully point the way towards more treatment. My fear is that I have the type of babesia that is most difficult to treat-babesia duncani. It originated in Washington state.

I'm trying to shift the focus away from this illness while also doing the necessary education regarding this disease. I'm more and more clear I have lyme. I wish I didn't. I'd almost rather have cfs and take valcyte for 6 months and get better. A part of me has been in denial about this. Preferring to believe that my doctor is wrong.

I emailed one of the people on my dissertation committee yesterday to explain why I dropped off the face of the earth. We had been trying to schedule some time to get together to talk about my starting to write and get published. As I got more and more ill it kept getting pushed to the back burner. Then it got to the point where I didn't want to deal with telling her how ill I am. I don't know why that's hard to do but it is. She was glad to have heard from me and wrote that she wasn't surprised that I got sick given my topic and the fact that I had to live in the liminal space between life and death in order to write the way I did. I have to say it's a beautiful dissertation. But it's painful. I have my copies tucked away so I can't see them because they remind me of a life I left. I plan on getting a copy out and look at it anyway. I'd also like to get into contact with the other two members of my committee. Maybe I can make a stab at writing a short article. I would need an editor though. Even writing in this blog is challenging.

In the meantime I found out my dad's prostate cancer has reoccurred. He saw a new urologist in Utah last week who made the diagnosis and also started him on treatment right on the spot. He sounds like a good doctor. I haven't spoken to my dad yet-I've been too ill but I'll see him this weekend.

Saturday, July 19, 2008

Friday, July 18, 2008


I think one of the hardest parts of this illness is trying to figure out whether treatment is working or not. I also don't know what to say I have. Do I have lyme? Do I have lyme secondary to cfs? CFS secondary to lyme? Do I have a little bit of lyme, a little babesia, a little epstein barr, a little of HHV-6?

Part of knowing means knowing or having clues to follow in terms of treatment. I'm learning that I can't rely on doctor's, even the specialists to tell me what to do. It's the patients' who are also suffering from this that I find I'm turning to more and more. Today I figured out that my current treatment protocol is in conflict. And, that studies have shown that colloidal silver causes cancer in animals and can have other toxic effects as well. I found that out from the lyme group I'm on. It's also contraindicated for the methylation protocol. I discovered that from the methylation group I'm on. So I've stopped taking the colloidal silver. Instead I'll take Olive Leaf Extract which also has antiviral, antibacterial, and is also good for helping with candida. My tongue is white and burns.

I was scarily exhausted today. I couldn't even push myself to clean. Usually I try to clean every day. Sometimes it's a drag because the cleaning uses up all my energy and then I have nothing left for anything kind of fun. Today I did the dishes and that's it. As I was doing the dishes I was so exhausted and became gripped by fear-what if I end up bed bound?

I'm also aware that it's just past 8 weeks since I started treatment. Spirochetes have a 4-6 week reproductive cycle or something like that so there can be symptom worsening during those periods. I took an epsom salt bath and drank a big glass of lemon water. I think it helped a little.

I need to be more disciplined about tracking my symptoms, moods, and activity levels. I write the dose and times I take medications on a calender but at this point I'm taking so many things I can't keep track of it all.

I got an email from my 9 year old niece. It was adorable. The title of it said "Hey" followed by a short adorable email. I was so glad to get it. I actually cried. Then I found myself googling "how to talk to 9 year olds." I found myself getting worried that I would alienate her somehow. I'm generally good with kids so I think this is indicative of my mood.

The past few nights and mornings I've been awakened by the TV next door. The man who lives there is 86 years old (the politically correct thing to say here would be something like "bless his heart"). I won't be politically correct. He's an self-absorbed dirty old man who has been incredibly inappropriate with a couple of the women in the neighborhood. He also gives me a hard time about not working every time he sees me. He probably can't remember that I keep telling him I'm too sick to work. It's a sore subject with me anyway. There's things I like about him but mostly I try to avoid him. He's always worn a hearing aid and has difficulty hearing but the volume of the TV lately is so loud that having my ear plugs in doesn't even help.

My dad is in Utah right now. He saw a urologist in Utah yesterday. Turns out they will be moving there on August 22nd-the same day my parents were married many years ago. The move came as a shock because of its suddenness. We still don't know why his bladder was throwing blood clots.

The acupuncturist's office called. I'd left them a message canceling my appt because it turns out I have lyme. I got a really nice message from the receptionist there. Then I got a call from the acpuncturists new partner. It sounded like they wanted to continue to treat me. I had this fantasy that they would offer to do it at cost given I'd been trying to get them to give me herbs for lyme all this time. Anway, I left 2 messages but have yet to receive a returned phone call. It's so typical of my experience there. Niceties, promises, get my hopes up but no follow through.

I have to decide what to do at this point. Do I find another acupuncturist or do I look for a therapist?

Thursday, July 17, 2008

Bad Day

I had to be at the psychologist's office by 9:00 a.m. for the "mental exam" for SSDI. I wasn't feeling well. She said at one point "you look really exhausted, sickly, and frail-is this typical for you?" She chattered quite a bit which I found exhausting. Then we did the neuropsych testing. I tried so hard and was alarmed at how badly I did. To see how much my cognitive functioning is affected was difficult. I cried a lot. At the end of the interview she said she was very concerned about my depression and recommended therapy. She added that given what I'm going through the depression is to be expected but she's concerned nevertheless.

When I got to my car I saw I'd gotten a parking ticket. I didn't realize the appointment would last 2 1/2 hours.

There are days when this feels like a nightmare. Having no way to escape it frightens me sometimes. And then there's the deepening sense of isolation and sense of aloneness. I'm spending way too much time by myself. This apartment feels like a ghost town and it saddens me. I don't think anything will survive this illness. Nothing.

I feel very spacey and strange today. The testing wore me out.

I have to figure out how to lessen this sense of isolation.

Sunday, July 13, 2008


It's been a long day. The methylation protocol, new antibiotics, restarting the Anti-Babesia Herbs, and restarting Argentyn 23 (colloidal silver) is kicking my butt.

I posted on one of the boards I'm on about the methylation protocol. The feedback was all similar-go slowly. I followed my doctor's instructions even though I know from experience to halve whatever he recommends. This time I didn't. Nor did I follow my peer advice. I think with the new treatments toxins are being released to fast for my body to process. I feel lousy as a result.

I woke up with pretty bad muscle aches, nausea, lack of appetite, increased dizziness, and some weakness. I drank lemon water which helped a little though not as much as usual. My mood hasn't been the best. I feel quite discouraged wondering if I'll ever get any better.

I think somewhere inside me a molecule is aware that this is all part killing all the bugs. When I'm in the midst of feeling this bad, it's hard to maintain perspective.

This is such an isolating illness. I miss being around people but I can't promise that I'd even be able to follow through with anything. Days like today also put me in touch with how much grief I feel over the loss of the life that I had. I try and not think about it but sometimes it gets to me. I was always trying to build my life without ever quite settling on accepting how it was. Now I'm forced to accept it-for better or worse. Accept it I may but I'll refuse to stop fighting for it to get better.

I did have two victories this week. One happened last Weds when I was able to drive all the way into Oakland (3.5 miles) to get my blood drawn at a lab. I arrived at the wrong address but decided to walk since the lab was at most 2 blocks away from where I parked. I didn't see the hill that was staring me right in the face though. When I stopped the car I felt a sigh of relief that I made it, and an even bigger sigh of relief that I was out of Alameda for the first time in 3 months since my doctor's appt in Santa Rosa. It was hit and my car's air conditioning doesn't work so I opened the bottle of Calistoga I brought. Water spewed all over me. I guess the hot weather made the Calistoga bottle act as if it had been shaken. I humbly walked up the hill, soaking wet from the water. I haven't walked up a hill since being in San Francisco in December so that was also new. The things I used to take for granted. I loved walking up that hill. It wasn't easy. Because the lyme is in my brain, it affects my walking at times making me stagger. It's just a little and I don't know if it's that noticeable. It probably looks as if I'm walking while reading a book when you stagger because you're not paying attention to where you are going. The only problem is I'm not reading a book and walking.

When I got to the lab I was sweating and wet from the water but I felt very pleased with myself. I sat down and waited for my name to be called. I felt a bit faint. Whenever this happens it's also accompanied by some anxiety. I just hate, hate, hate fainting in public. So then I have to do some work to calm my anxiety down. My ipod was good for that. I knew that hill was not good to do but I needed to walk it. Then my name got called. The technician put the needle in my arm. For some reason I made the mistake of looking at it prior to her putting it in. I never do that. I saw there and waited and waited while she drew vial after vial of blood. She kept tapping my vein, shaking the tube. I was feeling a bit lightheaded so I tried to make conversation to distract myself. She wasn't a talker though. I'm sure it gets tiring having anxious people make desperate conversation. It was taking a long time to draw the blood. Then she said "come on little vein don't poop out on me now." Wha? My vein is pooping out?! What does that mean?! OMG, OMG! I felt even more lightheaded. I thought I was going to pass out and fantasized about ripping the needle out and running away. Finally it was over. It was only 8 vials. Having 7 vials drawn a couple months ago didn't take nearly that long. I don't get it. I guess my blood is thick? Who knows.

Then my second victory was that I got my hair died yesterday. I made it through a 2 hour appt. The shop was very quiet for which I was very grateful. There was one lady who came in who sat next to me for a little while. She started making funny sounds with her mouth. Little does she know how close she came to having a fist in it.

Anyway, I was pleased to have made it through the appointment but not so pleased with the result. At all. I've never had red hair before. While I think it looks great on many many people, I'm not one of them. It's not red so much but a light red. It looked good before she put the highlights in my hair.

Today we went to Border's which is now here in Alameda. I was feeling pretty dizzy so the escalator ride was a bit interesting. I've been looking for some nice paper so I can write letters to my dad. Since I can't drive far I'm limited to what's here in Alameda and so far I've been unable to find anything except for tacky stationary. It just doesn't seem right to write my dad a letter on copier paper. We still don't know the results of anything.

I found a book in which I had left a piece of paper that my dad had written instructions for a card game. I felt big pang of missing playing poker and other card games with he and LuAnn when I would visit. Somehow it was this symbol of a past that would never again be part of the future and I cried.

Sometimes it's just a drag that the present always becomes a memory. When ill those memories can pack a punch.

I'm trying to establish a sense of community online. I'll write more about that later. It's time for dinner.

Friday, July 11, 2008

Three More Hours Til Bedtime

The stuff arrived from my doctor's office today. All $292 of it. Probiotics, methylation supplements, Argentyn 23, and A-Bab Herbs.

I started the methylation protocol. I also tried doing some research on it again but I just can't understand it. One of the online forums I'm on has a lot of people on this protocol. I posted for advice and the advice I got was to go very, very slowly-slower than what is recommended. This was after I'd already taken the days doses. I guess toxins that the body can't clear become more open. The die off from the toxins-viral, bacterial, lyme, ect...can be hard on the body so it's important to go very slowly.

It's also recommended to take the supplements prior to bedtime. I know why now.

I had lunch with both my sisters today. It was great to see and spend time with them. Plus they brought 4 boxes of books! I couldn't help myself so I opened one box and added just a few books to my little store. The only thing that totally bummed me out was that I had some handmade chocolates from coco bella for them to try but I completely forgot to give them some. I had the box on the table and everything.

The urologist has had my dad's pathology results for the past week but my dad is unable to get ahold of the doctor to get the results. This urologist is an ass (no pun intended). They have an appt on the 16th to get the results.

I have to design a table for taking my meds. It's all complicated in terms of timing. I can't drink milk within 2 hours of taking Minocycline-plus I can't lay down 30 minutes after taking it. I have to take Argentyn 23 on an empty stomach and I take that 3 times per day. I have to take probiotics twice daily but can't take them 3 hours before or after antibiotics (between the 2 antibiotics-I take them 4 times per day).

Tomorrow I'm getting my hair dyed. I hope I don't faint.

Tuesday, July 8, 2008

The Marathon

I just spoke with my doctor. This is all so long and expensive. I felt a bit discouraged while talking to him. He sounded a bit discouraged. So it's kind of back to the drawing board. I do have lyme but it might not be the primary driving force. He said one of the reasons doctor's don't like treating these illnesses is because there isn't good clearcut testing that points to clearcut treatment.

He's going to order more tests. I'll also start supplements for a methylation protocol. I've done a tiny bit of reading about it and it' pretty complicated especially for a cognitively impaired brain. I'll continue to treat the babesia. He thinks the babesia might be one of the problems so I'll have to pay $195 out of pocket for that test.

We'll add the antibiotic Omnicef to the mix. It's one of the antibiotics used to treat lyme. He wanted to add Mepron which is an anti-malarial drug to treat the babesia but most times insurance won't pay for it and it costs $800 per month. So I'll stick with the A-Bab Herbs in the meantime. The test for babesia, if positive, will make an arguement for the insurance company to pay for the Mepron.

It's crazy. What an eye opener. I'm too sick to work-housebound-and yet have to pay out of pocket to get treatment even though I have insurance. And on the other side is all the work that goes into trying to prove that I need SSDI. It's fucking crazy.

I feel like crying. I was hoping for a straight shot in regards to treatment but one thing that is consistant about all this is how insconsistant it is. On my good days I understand and accept it. On the tougher days I get tired of being thrown for a loop. It's just the nature of this illness. The medical system is not set up to treat this. In fact it's set up to decline treatment in order to save money. I could go on a political pundit rant but won't.

I shouldn't still feel this fatigued. I should be having more improvement by now, at least according to the doctor.

I asked him at the end of our conversation if he still thought I might have improvement. He said he believes I will have a lot of improvement. I won't ever be the same but I will have improvement.

Why do I feel so discouraged and let down?

I think he's also testing for lupus and rheumatoid arthritis as well as systemic inflammation. I just hope insurance pays for everything. Between the phone appointment, herbs, probiotics, Argentyn 23, and the Igenex test the cost is over $500. And it's still not a cure nor even close! It's just a guess at what might be going on!

He used the exact metaphor that I thought of as I was walking back from the post office, that the engine in my body isn't quite firing up like it should or something like that.

I so wish I would have gotten proper treatment when all this started.

Sunday, July 6, 2008


I had a strangely good few hours today. I wasn't plagued by dizziness, chest discomfort, bad fatigue. I didn't feel great but it's as close to normal as I've felt in the past year.

I've been on antibiotics for a little over 6 weeks now. It will be 7 weeks on Thursday.

At about 4 I started going downhill. The dizziness came back with a vengeance and it was different. We were walking back from the park and it felt like my sight was starting to grown a bit dim. I wasn't sure if I was going to have an attack of vertigo for the first time either. I was a little frightened by it. With this illness, I'm never quite sure what's around the corner whether it's regarding treatment or symptoms. It's a constant shape shifter-trickersterish.

I did some reading in Jungian stuff again. How I miss that world. I looked at the SF Jung Institute's list of workshops for the fall just in case. The people that I used to hang out with are now licensed and a couple are lecturing there. Sometimes it just hits me in deep in the gut how much my life got derailed by this illness. I try not to stay in that place. I'd like to reconnect with people but I'm just not well enough to. I don't have the energy to explain what's going on. I know my old friends would be wonderfully understanding.

Anyway it was good to read and good to feel engaged in the material. I was reminded how much this is where I belong.

It will be so nice to get my mind back. I can feel it coming back and then slip away but at least it's coming back a little more.

My current treatment regime:

100mg Minocycline twice daily
200 mg co Q10 with 1 tablespoon cod liver oil
5 mg hydrocortisone a.m. and 2.5 mg p.m (to address dysautonomia and hypoadrenia)
60mg of Armour Thyroid first thing in the morning (titrating up to 90mg)
1 teaspoon Argentyn 23 (Colloidal Silver) three times daily
Anti-Babesia Herbs (ran out last Tuesday)
Methylcobalamin Injection
Nystatin 5 ml four times daily
Probiotics 4 daily
Undenatured Whey Protein
Liquid Vitamin B
Milk Thistle
Magnesium Malate
1 gram vitamin C
At least 20 grams fiber daily

I will talk to my doctor Tuesday. I will most likely be adding more antibiotics.

It's almost 2:00 a.m.

I'm exhausted but can't sleep. I know what it means. Tomorrow is going to be a bitch. When this happens I know I'm in for a big mood herx which means the spirochetes are causing die off in my brain.

Or, it could be the donuts.

Yesterday was a bad physical herx-lots of muscle aches, bad shoulder pain, flu like symptoms.

At least my show is on TV. I'll enjoy what I can of tonight and hope that tomorrow isn't one of the bad bad days.

Tuesday, July 1, 2008


I got angry with my doctor's office but they finally faxed me my Igenex test results for lyme.

I'll preface this by saying I'm in a lot of pain right now. My shoulder and arm are incredibly painful. I don't know what's going on but it very well be the lyme. I don't want to take another vicoden but I may have to. I don't like how I feel when I take vicoden. It makes me feel worse physically.

Anyway, the test results. I'll talk to my doctor next Tuesday and I don't know enough to solidly interpret them but I did post on 3 lyme boards. It looks like lyme.

The results display activity on a range of numbered bands, some of which correspond specifically to lyme or borrelia burgdorferi. All of the activity on my results matched the bands specific only to lyme. Three of the bands showed "indeterminate" which means something showed up but not strong enough to show a firm positive. Two other bands were positive.

It looks like it's the neuro-lyme and late stage which is a bummer but explains a lot.

I'm having a lot of feelings about it. It's weird. But then I'm also going through another round of mood herxes.

I feel pretty sad and upset about my experience with the medical profession which I know does the best it can but if I had been treated earlier things would have been different. The acupuncturist has no excuse. If I could, I would sue him and reclaim all the money I spent.

I have more to say but think I'll wait so I can lay down and get some ice on this shoulder.