Curioser and curiouser...

I have not been blogging or doing much of anything beyond attending to basic survival needs (food and shelter being the big ones) and managing a whole bunch of health care issues. 

I feel uncertain where I am with my healing process and haven't been writing because I haven't been clear about what is going on with my body. So today's blog entry is perhaps less informative for those seeking help in curing Lyme and more about my own process on this very dark and mysterious path.

I'm still dealing with chronic fatigue, pain and neurological symptoms. I am staying out of my house as much as possible and have moved into a tent with heat. This is definitely helping with my nausea, but little else. Don't get me wrong, I am wildly grateful for the connection my Lyme doc made about bio toxins and the digestive distress. At least I can understand what was driving me to the ER and how to avoid it. That is huge!! But what's next? Does this new doc have another miracle to hand out? I'm still waiting. 

I am afraid she has put the Lyme and co-infection treatments on the back burner or perhaps she has a long-term strategy she has yet to reveal. I don't know. She isn't the best communicator. I still feel like I'm calling all the shots and I'm not a doctor, nor am I enjoying pretending to be one (even if it still seems to be my best option.)

So I'm using the Rife machine several times a week now - not quite daily yet - and I'm increasing the A-Bart tincture and taking all of my homeopathic, herbal, alternative, and vitamin supplements. I'm hurting worse than ever and having neurological symptoms. Is it because I'm being wildly successful in my treatments and creating a herxheimers or am I totally failing at this and getting sicker with Lyme and Bartonella? How am I supposed to know? Who is supposed to know?  

My family doctor is awesome and I love her. When I first presented her with the genetic  and stool test results from my new Lyme doc, she looked at it and said she had no idea what any of it meant. The last time I saw her, I expressed my distress and dis-ease at my treatment and she told me to give her all of the info from the Lyme doc and she would figure it out. Not only that, she would discuss my options with the Immunologist at UVA, whom I see later this month. She said I did not make antibodies to the pneumonia vaccine the Immunologist gave me and since I had an abnormal response and we will go over what that means when I see him on the 22nd. Hopefully, there will be some help for me and these two will be inspired by my case and conspire to heal me. I'm all for it!! 

My GP is considering how she might be able to get a PICC line approved for me. As distressing as the idea is, I can't help but remember it's what got me over the worst of it the last time I went around with this nutty thing.

So about the house, we've added the UV light to the HVAC and had someone do some cleaning and I'm still having trouble. The indoor environmentalist suggested we get a HEPA filtered vacuum cleaner and an air scrubber and deep clean the house ourselves (not happening - but maybe we can hire someone) including wet-wiping down the walls and using lots of rags. 

My next steps, slow though they may be, are to purchase these 2 pieces of equipment as cheaply as possible and begin the process of cleaning and removing smaller items from surfaces and floors to accommodate the cleaning process. Then there's coordinating the cleaning process. It's all big and I can't do much of it myself since it makes me sick after awhile, even with a respirator. I feel a bit overwhelmed, especially since all of this effort might not do it. Yikes!! However, my motto is to do the next step and not worry too much about the rest. One thing at a time and it will all get done somehow or something else will happen.

I will be calling on local friends for help and might weather out the cleaning event and wait for the dust to settle somewhere away from here. I've been invited back to Madison, WI to stay with those lovely friends of mine in their amazing house with the tempurpedic bed in the guestroom. That's definitely appealing. But for now, just the next step...

I'm not having fun yet.

I am ridiculously frustrated and unhappy right now. I have been sick and tired for so long and I just want to go home, to my own bed but I can't. My house keeps kicking me out, despite the HVAC repair. I still have hope that we can clean up the house and it will get better after the air is filtered a few more times, but this is the pits and I'm feeling done with this part already!!

I now have a respirator (about $30 at the local hardware store) that says it's good for asbestos and toxic molds. Every time I go indoors, I either wear it or feel nauseous. I sound like Darth Vader in it. It's uncomfortable, too. We just had a rush of heat and mosquitoes so the porch has been less than perfect as a back up but supposedly the heat is leaving for a few more days. I expend so much energy on just existing right now, how on earth will I have energy for anything else? This is just crazy! 

I came to the horrible conclusion after returning home from some respite in the pacific northwest that I can't even take care of the Rife machine by myself in this current situation and my condition. My fragility is disgusting to me, when it isn't busy scaring me silly. I am having the internal conversations with myself that sound really pathetic and hopeless - like where can I go to live and get the help and environment I need? The answers are murky at best and I feel a bit lost lately. 

I was getting really scared that I wasn't treating TBDs beyond the homeopathics and gemmos that I take. I could feel the symptoms getting worse and worse. So, I finally had a Rife session yesterday with the help of my mate, but hadn't gone for so long that I was back down to 2 minutes and have been paying for it intensely since. My pain levels have skyrocketed, I'm too dizzy to walk without something to hold onto, the stabbing pains are back in my head. I'm waking up in excruciating pain in strange places of my body (for example, my ears the other night - that was weird.) I went too far with the Rife (not surprising) and am now herxing unhappily and uncomfortably and un-bedroomed - urrrggghhh!

I want to have a life outside of this illness, but it seems to be getting harder to do instead of easier. What's up with that? My latest idea, and believe me I'm running out of them, is to install the Rife machine somewhere in the basement and just wear the respirator when I go in. After all, it's only a couple of minutes or a few seconds if I try to go daily.

Oh how I'd love someone to watch over me. Sigh...

I've got it bad and I've got it good!

I have my own Rife machine!! Yay!! A friend who has been staying with me has helped me schlepp the panels, amplifier and voltage meter outside so I can Rife with clean air, sitting at my labyrinth. Now that's just sweet!! I only used it once before I left my SBS house (sick building syndrome) for a week and a half, but jumped right back in within 12 hours of being home, and talk about liberating!! It's wonderful to have this at my fingertips and I owe so many people my unending gratitude for their generosity and support.


Oh the strange things us Lymies will do to get better. Each time I hear of a new therapy, I slap the juicy vein at the bend in my elbow and say, "Snake oil? Sure!! Right here, baby!" I'll try almost anything once, usually twice just to make sure. 



My return home has been seriously challenging. First blow: I received an email from my GP that I failed the test for my immune system function (I was given a pneumonia vaccine which is not a live virus, but I was unable to make antibodies.) I fear that IvIg therapy might be my next step and that's just creepy, expensive and time-consuming if it runs weekly for a year. You can read more here: Intravenous immunoglobulin I won't know more until I see my Immunologist at UVA in late October. Sigh...
 
Next blow: I had hoped that the coil in the HVAC would be replaced, a new UV light installed and new MERV 13 filters in place while I was away, but for various reasons, it didn't happen. I was feeling comparatively good, so I wasn't too concerned about holing up in my bedroom with my HEPA filtered air, but when I woke up the following morning I was exponentially sicker. Crazy sick. So sick that I got lost on the way to my first doctor's appointment, about 6 miles from home. I couldn't figure out where I was. All of the street names were familiar but I had no clue. Cognitive dysfunction is freakin' scary. Maybe the scariest part of this disease. Fortunately, I remembered I had a smart phone with a map (I wouldn't have been able to place myself on a paper map, but my phone knew where I was.) I was 10 minutes late to my appointment, in unbearable pain, unable to concentrate, and spent most of the next 45 minutes crying and using up her tissues.



Next blow: I drove from there to see my new Lyme doc for the latest test results. She reaffirmed my genetic markers for chronic Lyme and my inability to clear biotoxins, as she suspected. Then we went over my other test results which indicated a severe problem with my pancreas, and virtually no good bacteria in my digestive track despite the probiotics twice a day, clinical strength digestive enzymes and chewable papaya. I am unable to take in nourishment properly and that's just bad. I'm also unable to return to antibiotic therapy so the arrival of the Rife is most timely and I must admit I'm pretty scared of sliding back down the rabbit hole.


Next blow: I drove from her office to a Hampton Inn in my town to see about staying there until the HVAC is repaired which would likely be early next week. I was turned away at the front desk because I was "local" which I later learned meant they were afraid that  police would have to be called because I was either a battered woman (I probably looked like one with the cane and tears) a prostitute or a drug dealer. I went home and cried angry tears and decided to not take no for an answer. The short story is that I made a reservation online and got someone there to back me up if I had a problem at the front desk. After I stayed one night I advocated for myself, wrote a letter to the manager explaining my situation and what happened, offered valid, actionable feedback using "I" statements and prepared to leave. The manager on duty came out to meet me, asked for a minute of my time, explained his policy, apologized profusely and promised to use it as a teaching moment for his staff. 


Despite feeling wildly unsupported in the big mean world out there, I was able to love myself and act accordingly, so I call this one a win. And now, I invoke ease, gentleness and grace. Enough of this trial by fire stuff, already!!

Call me a canary, if you must.

I'm going to share the super good news first. My new Rife machine is all set up and functional at home. I realized that my first treatment at home was my 7th treatment (one of my deeply meaningful and heart-opening numbers. Some of you think that's weird, I know. Others of you totally get it.)

I set the timer for 3:33 (more magical numbers) after learning what 4 minutes could do and sat in a wooden rocker between the plates - pictures to follow. At some point it felt like I had been sitting there a long time and I was afraid I hadn't actually started the timer. I was going to give it a little longer and then stop if I didn't hear it. Suddenly - and this was SO weird - my brain started vibrating. What a total trip that is! Freak city!! A few seconds into that sensation, the timer went off.

The next day and a half were the best days I've had all summer and then some. I had a bit of energy, the pain was not debilitating and I was incredibly high on gratitude. I was able to go to the waterfall with my partner. It's only a 5 minute walk, but I haven't been able to do it for awhile. I still needed my cane, but it was wonderful! The day after the Rife treatment, I hit a wall at about 6 pm and the pain and fatigue washed over me again but I was still so grateful for the little respite. My ND wants me to increase the Rife times and the A-Bart but not at the same time, lest I overload my body with detritus. 

I may well be over Lyme at this point, but Bartonella is alive and well within me. The problem with this co-infection is that it is an intracellular infection, hiding in a little pocket inside healthy cells. You can watch the youtube video I posted about Rife machines if you want the nitty gritty. The Rife machine is not equipped to hit all of the higher frequencies needed for Bartonella but it still covers a large percentage of the Bartonella frequencies. This little bug is tricksie. It has to be lured out of the cell to be killed. Not an easy task.

This is all incredibly fascinating to me.  My body is communicating with me and I am listening. I believe my body is echoing the voice of the Earth. We need the same things, me and the spirits of nature. Toxic overload is here and the 20% of the populace that cannot clear bio-toxins (I'm among them) are the proverbial canaries. You know how important the canaries were to the miners even though that thought is all quite disgusting, so please heed the canaries!!

The last appointment I had with my ND, she told me about Sick Building Syndrome. Who knew?? Seriously, this is all new and weird to me and it seems HVACs are the common culprit. I've never had environmental issues until now but as the new Lyme doc said, the immune system can only deal with so much. Apparently it's been too busy with bio-toxins to fight the TBDs. As my readers know, I've been experimenting with air filtration, staying outside, wearing a face mask indoors, etc. It has almost eliminated my acid reflux and nausea and if either does set in, I know what to do and can nip it in the proverbial bud before I get whisked off to an ER. That is AWESOME!! Happy dance!!

Here's the uuurrrrgghhh part, however. I am at a beautiful place, a sanctuary in NC that is just amazing. I am here for an event with a friend of mine that is just incredible. One of my frame drum teachers is dying and holding a birthday party here and it has been a gorgeous time of ritual, meditation and brahmari (yogic bee buzzing.) The ownership of this gorgeous facility recently changed hands. I woke up this morning fully aware that they have a problem with their HVAC. The acid reflux and nausea kicked in right away and I got outside quickly and felt lots of gratitude for the foresight to bring a face mask so I can pack up the room.  However, I don't think I'll be able to do the event today. It's only 2 hours, but I'm certain the building is sick and I don't know how to break it to the owners and for some reason, I'm afraid to be that messenger. I wouldn't be happy to hear it if I just bought a 54 acre retreat center, but I suppose I must and then let it go.

My room mate said she woke up with a swollen eye and allergies, too. What a bummer. Remediating the mold would be a huge expense for this place. Speaking of which, we got the quote for replacing our coil and adding in a UV light and it was less than I thought. I sure hope this fixes our problems with the house. That would be wonderful.

OK, that's all for now, folks! Thanks for your support!

Honoring my donors

This is the message I posted on my GoFundMe page this morning and wanted to share the update here, too.

The Rife manufacturer was/is waiting on a part and I should be able to get the machine tomorrow. Wow. Seriously, I'm just amazed.

I've been contemplating ways of paying it forward, backward, up, down, and all around. One thing I know for sure is that I'll make mine available to people who need it or want to try it.

When I get the machine, the first thing I'm going to do is decorate it with the names of all of my donors. I want to consciously remember each one of you and send you blessings and healing of your own. Each time I use it, the radio waves will pass through your names and if you believe in the power of a name - well, all of you should be feeling surprisingly more healthy soon!

I've been doing more reading on Rife treatments for cancer and it's fascinating. I've sent an email to the manufacturer to see if those frequencies are covered in my machine and if they are - well, that's a freaking amazing power to possess and I'll definitely share it with people in the cancer community who need it or would like to try it.

My head is still spinning with gratitude. Photos to follow!!

A Fundraising Success Story - Already!!

I am flabergasted, pixilated with gratitude and wildly amazed at the response from so many of my beloved friends (and at least one person I've never met) who quickly contributed to my fundraising effort. I checked my GoFundMe website http://www.gofundme.com/Healing-Hearth-for-Willow just before writing this post and saw that I have already received $2200! I messaged the vendor yesterday and learned that I need exactly $2309 including taxes, so I'm buying my own Rife machine today. I still can't believe it. I'm not sure when I'll be able to pick it up. She wrote it would take a couple of days, but I'll find out for sure when I see her this afternoon for Rife treatment #6 ~ which will definitely be back down to the 3:33 time and we'll see if I get back to the old pattern: Rife day I'm wiped out, I herx for 2 days after that, then get a blast of energy the 4th day. I kind of liked that semi-dependable cycle so I could make plans with less flaking out.

Fundraising for myself is pushing a whole lot of my embarrassment buttons. Asking for help hasn't been my strong point historically, but financial help - well, there's some kind of unspoken taboo here, some sort of societal stench, or something I can't quite name. Perhaps I am afraid of appearing (or being, for that matter) desperate. I'm not sure what delightful lesson my shadow self has in store for me. I can tell something is trying to make its way from my subconscious to my conscious mind; an important lesson, memory or awareness bubbling up. Maybe its an outmoded defense response, a buried fear, a hidden wound, a self-defeating belief. As of yet, I do not know, but I'll open, listen and ask for dreams to show me the way.

I have come to adore shadow work. With Pluto in my first house, I've had to get used to it! This energy I'm experiencing, the button-pushing, triggering, uncomfortable squirm is like being at the beginning of a treasure hunt, already knowing there's an amazing reward and if I stick to the quest, I'll even get the treasure!! Now, who wouldn't want to embark on an exfrighting journey like that? Plunging into the deep, dark depths of my mind for a shining gem. Worth it!!

So dear ones, thanks for the money, the prayers, good wishes, love, and of course, thanks for the opportunity to do more shadow-stalking!! Bwaaaahaaa! I'll keep you posted if it's fit for public consumption - and maybe even if it isn't. Thanks again to all who support me in myriad ways. I love you and would be lost without you! Blessed Be!

P.S. The number of blog views from Latvia is increasing daily, more than doubling US hits today. What's up with that? If you are a reader from Latvia, please post a comment and let me and my readers know what's going on. I'm very curious.

Just for fun, here are this weeks stats as of now:

Latvia	115
United States	57
Canada	26
Germany	16
United Kingdom	5
Netherlands	4
China	3
Hong Kong	1
Russia	1

And, here are this months stats as of now:

United States	161
Latvia	115
Russia	52
Canada	48
Germany	19
United Kingdom	14
Serbia	14
Netherlands	10
Switzerland	6
Italy	4

30 Seconds = 3 days? Are you kidding me?

Well in case you've been wondering how Rife date #5 went, let's just say it's taken me a week to be able to get to the point of telling you how it went. Sigh... Oh, wait!  I mean *happy dance*! 

You know that pattern I mentioned a couple of posts ago? Well, I blew it. There's an old saying "If it ain't broke, don't fix it." I think the 3:33 timing of the previous couple of dates was the sweet spot, so to speak. It was enough to herx, but not herx-like-I-want-to-die herx. That has been the aim according to my MD and ND - treat just below that line of the awful herxheimers. 

I'm not sure why I felt the need to add 30 seconds on that last trip. I guess partly because my ND wants me doing something like 7 minutes a day, and partly because I'm fiercely determined and partly because I didn't think it would make that much of a difference. Wow, was I ever wrong and I have such regrets about making that decision. Mostly because I missed out on a Lammas ritual that I was really looking forward to on Saturday night. I had thought: tired Wednesday, icky on Thursday and Friday, energy rush and good to go on Saturday. But those 30 seconds cost me 3 days of activity and I'm still paying for it in the pain department with these weird, breath-taking, shooting pains in my fingers, toes, head and hips and the RLS (restless leg syndrome) has brought me to the verge of tears a few nights.

That treatment was last Wednesday. Today is Tuesday and I'm just now getting the energy rush I expected. My next Rife date is tomorrow and I'll be dropping back down to 3:33. I still have not been able to increase the A-Bart, but I'm OK with that. 4 drops a day is A-OK. I'm thoroughly exfrighted - I'm ordering my Rife machine today. I have raised some money on the GoFundMe website and my mom mailed a check to me to reimburse me for travel expenses. The combo is about $100 more than the machine, so I'm doing it!! I can't believe it. Surreal. Exciting. My next appointment with my ND is on the 12th and my MD, not until September. Although I'm impatient and want to get on with it, at least I can actually DO something with the Rife while I await my next appointment. Sweet.

And finally, now I'm curious why Latvia is taking the lead in my blog readers this week. If anyone from Latvia is willing to post a comment, please do. Let me know what is happening in the culture of TBDs and the medical scene where you are.

If you want to help

In earlier posts, I've mentioned a handful of dear friends who offered to spearhead a fundraiser for me to get a Rife machine, re-mediate our mold problem and recoup some of my crazy medical costs over the last 18 months. Well, we finally launched the website and if you're inclined to make a donation, it's just a couple of clicks away.

While this is making me wildly uncomfortable - asking for money - I feel like I owe it to my spouse to ease his burdens while I get to have the best health care possible guilt-free. If I can just successfully swallow (and digest! I know all-too-well how important THAT is!) my pride, I think it's a win-win situation.

Thanks to my fundraising team for gently prodding me, encouraging me, loving me, and making this easier. You're amazing!!

Donate here if you are so inclined. My partner and I would greatly appreciate any gift, no matter the amount.

Rife Date #4

So here's the pattern:

I have a Rife session and feel pretty wiped out for the day by the time I get home

The next 2 days I herx, including old symptoms I haven't had for awhile 

Sometime on the 3rd day, I get a crazy blast of energy like I haven't felt for years. While it doesn't last very long, I've noticed it lasts a little longer each time I use the Rife machine.

At this point, twice a week is all I can physically afford to do since this treatment basically takes 3 days. I am so very grateful we've had an amazing cool streak because we haven't needed the A/C much and I've been able to stay indoors while herxing so I can stay close to my bed and the loo. That's been an incredible gift.

I'm still distressed over the pain in my hands and hips. I have to medicate to be able to type or otherwise use my hands. I don't know why it seems to be getting worse unless it's the soy in my smoothie protein powder. I know soy can be inflammatory and I haven't noticed a problem with it before. However, I'll try switching it out and see if that makes a difference.

The new doctor is willing to take me on as a Lyme patient and I am so grateful! My PCP said she was willing to take over the prescriptions I was getting from Dr. Jaller (the Lyme doc in Maryland) so I think I'm good to make the switch! Yay!! 

I will call Dr. Jaller's office and let them know what's happened and that I'm switching. I really hope he takes an interest in my case and is able to help other people suffering by learning from what is helping me. He's a pretty cool guy that way. I'm mentioning him by name because he's gone into private practice and is no longer accepting insurance so he's able to treat Lyme and TBD's openly and without worry of harassment. What a nutty business this is. How many doctors will make this choice before the government wakes up to this crisis?

I believe his protocol works for a lot of people and I highly recommend him in the Rockville, MD area. His new website is http://www.drjaller.com/and it looks great and oh-so-welcoming to people suffering from this freakish disease. I owe him a major debt of gratitude and will thank him profusely for all he's done for me.

OK, Peeps, one last thing; I am curious about the people in Russia reading my blog. I recently heard in the Lyme news that TBD's are being diagnosed more and more in Russia. If you're in Russia and have information to share, please post a comment or send a message. I'd love to hear from you!

Who's the Clever Boots?

That would be me! I feel quite proud of my ingenuity and medical experiments on myself. Although I'm doing two new things at once (addressing the air quality in my house and using the Rife machine) I'm pretty sure I can tell what impact each one is having on my health and both are positive and give me hope!

About the Indoor Environment

First, let me just say it's not easy getting A/C people to come out for an estimate in their busy season. I still don't have an appointment. I realized I wasn't going to be able to sleep in the tent during the heatwave nor in the house, so after laughing about that for awhile, I started surfing the web. Surely other people out there have figured out cheaper efficient ways of dealing with this stuff and sure enough, here's what I found out.

Air filtration was very high on the list of things that worked for people with environmental allergies. From what I could gather, one of the best types of filter is a HEPA (high-efficiency particulate air.) It claims to remove particles up to .2 microns which covers dust, mold, pollen, animal dander, etc. Here's a Wikipedia link if you'd like to read more: http://en.wikipedia.org/wiki/HEPA

I headed out of the house and had a frustrating search, often the case in our small town. Staples didn't have the right combination of size and filtration for an affordable price so I went to Wal-Mart (which is a last resort but that's another rant.) I read all of the information on every box in both stores and was about to surrender when I noticed something. I found a Holmes aer1 unit that was the perfect size for my room and it had a "HEPA-type" filter. It bugged me that I couldn't get exactly what I wanted so I just stood there reading boxes to see if there was anything I overlooked. I glanced up at the top shelf where the filter replacements were housed and started reading those boxes. I landed on one that was a HEPA filter "aer1 ready!" Oh, joy!!! For about $30, there were 2 HEPA replacement filters in the box, each lasting one year. The aer1 unit was around $40. It has the option of ionizing the air but also clearly stated the hazards, cautions and safest way to use the ionizer.  I dashed home and plugged it in, cranked it up and went back outside to let it do it's thing. My partner rigged a way for the cats to get in and out with the door closed (so there's another Clever Boots!) I've had the unit on 24/7 for a week and boy can I tell the difference!! Dare I say this debilitating nausea may be at its end? Knock wood. I sure I hope so! Although this filter certainly isn't the long-term solution, I now know it's worth addressing the mold issues in the HVAC. It won't be a waste of money. For now, I'm confined to my room most of the time I'm indoors. Otherwise, I start to get a little nauseous and can feel the beginnings of acid reflux. It's very weird. What a relief to know this! WOOT! 

3rd Rife Session

I went to Carol's the day before yesterday for another Rife treatment. I decided to increase my time from 2 minutes to 3 1/2. My ND recommends I get up to 7 minutes a day but that will be a bit down the road. I enjoyed her company and deeply appreciate her willingness to share. It's wonderful and I can't wait to do the same for others. What a lovely thing to be able to offer people. I'm thinking of doing a super quick fundraiser for just the Rife machine and another campaign later to work on the medical costs that are putting us in the hole. I'm so ready, willing, needful, almost desperate for this machine. I feel more optimistic than I have in a very long time and as I expressed earlier, it's a bit of a drive to do twice a week, especially since I'm ultimately aiming for daily use.

So the YayBoo (that's one of our household deities we created) is that I had a wallop of a herx yesterday. I felt ridiculously intoxicated - slurred speech, wobbly gait, forgetful - had a good load of pain and oddly, the recurrence of 2 symptoms I haven't had for a long time: tinnitus in my left ear and RLS (Restless Leg Syndrome) all freaking night long. UGH!! I really hate that one, but I was also really excited to see that symptom come back. It makes me think the Rife machine really got in there deep and that is majorly exciting! After hours of this agonizing bout with RLS, I finally got up at 2 a.m. and took the homeopathic remedy for RLS and a sleeping aid and managed almost 3 hours of uninterrupted sleep. I'm feeling pretty whacked today, but also excited. I need to drink LOTS of water and be very good to myself. 

And last note for today, I see my lovely family doctor tomorrow and she will see if I've been making antibodies to the pneumonia vaccine. I'm curious about all of that for sure. 

P.S. Unsolicited Advice: Smile at people today and notice if you make others smile and if you just feel better in general. I think it's good, fun, effective therapy and the world can always use a little more joy.



 

At least I'm still laughing!

I'll start my post today with a big shout out of gratitude to my parents. I could give an endless list of reasons I'm grateful for them, but the one shining forth so brightly these days is humor. I am so happy to be able to laugh at myself and life in all it's weirdness.

So, I've been experimenting getting away from the A/C as much as possible and it does seem to make a real difference in terms of my nausea, but not the rest of the TBD symptoms. In fact, I'm having an increase in symptoms and don't know if that is the effect of the Rife machine, the heat, too much A-Bart, or something else. I've been getting outside first thing in the morning and staying on the screened porch or when I need to lie down, my friend's tent. Here's where it gets laughable.

The summer heat is finally supposed to set in for the week (it's been unseasonably cool and rainy) with a wallop of humidity. The A/C people won't be here for a few days to give us a quote and I don't know how much longer after that before we actually get the coil replaced. So what's a tick bit chick to do? Too much heat can create sheer HELL for a Lymie, as some of you have probably found out the hard way, like I did. Heat can kill off loads of bacteria and cause a mighty herx reaction. Yet, the A/C might try to drive me back to the ER and I'm definitely not into that!

Perhaps I need to take a friend up on her offer of staying at her house until we have a new coil and filter (apparently a Merv 13 is the bombdiggity, but who knew?) However, that also feels just weird. 

Now just a quick note on the Lyme stuff, the night sweats are back which is a total bummer, I'm often crazy dizzy and off balance, the fatigue is seemingly unbearable at times, I'm so tired of being tired, and the pain in my hands and lower extremities is often debilitating for long periods of time. (Another reason why my email is so backed up and I rarely go on Facebook. It hurts.)

I have canes everywhere and for all occasions and they've been getting a work out lately. I've started my symptom tracking again. I know it's important but I've been letting it slide because it's freakin' depressing to look at, day in and day out. 

I've contacted the new doctor to see if she'll take me on in the midst of my disability case and if she'll take over some of the symptom management drugs I currently get from my doctor in MD. I'd like to make the switch. We'll see what she says. Those drugs are:

cyproheptadine - an antihistamine that stimulates the appetite
ondansetron ODT - an anti-nausea drug
dexilant 60 mg - an acid reflux drug
marinol - to help with nausea and appetite stimulation (I'm still undecided if I want to use this one or not. I think for me it would be great to have for emergencies but not for every day use. It makes me wicked tired and I don't need that!)

Finally, I heard from the immunologist yesterday and so far, the blood tests point toward his theory that I'm in 3% of the population that is a "normal variant," but that we'd know for sure after the blood test to check my antibodies for pneumonia, which will happen when I see my GP next week.

Alright, peeps. I think that's all for now. If laughter is the best medicine, I should be well on my way to wholeness. 

Another expense ~ there be spores in the HVAC!!

My doctor is one smart cookie. It's a bit of a tale, but geez, it's expensive getting the proper treatment, and I mean down to the bone, cellular, good holistic treatment of body, mind, spirit, and environment. My goodness. I'll try to summarize a ton of information as succinctly as possible. 

The Indoor Environmental Assessor 

He came, he saw, he said "ruh-roh!" Although he was unable to get directly to the coil in the HVAC, he slid his iPhone into an opening and took a picture. He said we definitely have a mold problem there. My doctor's suspicions on that bit was right so hopefully she's right about the rest of it. The recommendation is to replace the coil and install a UV light with the new coil to avoid creating a spore-friendly environment in the future. It's quite expensive. Sigh...

Last Weekend - Fear and Friendly Help

A friend of mine came to my house for the weekend to clean, cook and visit. It was wonderful to have her energy and attention here. I picked her up on Friday. When I woke up on Saturday, I was terribly nauseous and started to get the burning pain under my sternum. I thought I was going to have to get her up to take me to the ER. In desperation, I grabbed all my morning meds and headed outside hoping that if my indoor environment was indeed troublesome, maybe I could bypass some problems by getting outside. I managed to get my nausea under control but it was dicey and I didn't feel quite right the rest of the day. I decided after that to get up and out of the house as soon as possible in the mornings and do a slow wake up on the back porch. I started doing that Sunday morning, which was also the day I had my first Rife session. So far, my nausea is WAY better but I'm not sure if it's because I'm going outside or because of the Rife or a combo. I spent last night in a friend's tent in my backyard to see if it effected my nausea and for the first morning in I don't know how long, I did had no nausea - none - and did nothing prophylactic to manage or bypass it. What a huge relief!! I can't believe how wonderful it is to just deal with the Lyme, Bartonella and Babesia. That sounds crazy, I know, but after months and months of chronic nausea and appetite loss, I'm deliriously happy about this. Now, onto the adventure...

The Rife Machine - Take One

I went, I saw, I said "By Golly, I think it works." I was generously welcomed into Carol's home Sunday afternoon and we exchanged our TBD stories. She inspired me tremendously! She has been infected several times and been able to get over the various infections with Rife treatments. She told me about the machine she has and how it was developed. It sounds like just what I need. Instead of needing to program specific frequencies for specific infections, it's a multi-frequency unit that hits frequencies outside of healthy cells. Fascinating. The first time, I was afraid I'd over do it as I so often do so I just did 15 seconds. (I re-read my ND's treatment plan this morning that said to start with 6 minutes!!!) I felt some tingling on the lymph nodes in my throat. The next day, I had a bit more energy than usual but couldn't get my pain under control, was super dizzy and had a hard time keeping my balance. It felt effective and reasonably mild.

The Rife Machine - Take Two

I went to Carol's again on Wednesday and sat between the plates for a minute this time. I felt some soft tingling in various places. Again, I felt more neurological symptoms than I expected and it seemed to exacerbate my pain. However the next day (yesterday) I felt better energetically than I have in a long while now. 
  
Pain Is Still Making Me Insane

I really want to knock this thing out, but I have to surf the edge and truly listen to my body. I know it better than anyone else does and I must advocate for it. This is wildly unfair and I might just pout about it, but I have a new and wonderful bed, but now I'm sleeping outside in a tent. Admittedly either way, I wake up in excruciating pain a few times each night - new bed or not. That part hasn't changed, but the full body throttle I felt every morning getting out of bed is notably less severe and that's awesome!! So it's either sleep on the comfy bed and battle morning nausea or sleep outside in a tent and not have that struggle. Unfair, eh? Sigh, again. 
 
Current Protocol

I'm still at 4 drops of A-Bart daily along with the other homeopathic remedies, supplements, etc. I'm going to try sleeping indoors and see if the nausea flares up again. Perhaps that way I'll know if it's the absence of mold or the effects of the Rife machine.

That's it for now. Thanks for reading. I know my posts seem to be getting progressively longer. I feel like I'm in an accelerated phase of this thing and hopefully picking up speed toward recovery. Yes. I'll take it!

 

Pain, Pain, you're driving me insane!

Wow and holy cow! I am amazed, dazzled and dare I say impressed that I am experiencing such an extraordinarily painful herx from reintroducing the A-Bart tincture. I knew it was effective, but this comes as quite a shock to me. This is the remedy that the MD said to reintroduce even if it was only 1/2 drop a day. She said put one drop in a glass of water and throw half of it out if I had to. Whatever it took to be able to take it and stay on it, gradually increasing without creating a herx. 

Boy, did I overshoot my limit. I was up to something like 21 drops a day this spring. I know the bacterium have been having a heyday during my antibiotic, antimicrobial, antimalarial hiatus and I have been acutely aware of becoming sicker. However, I was still floored - uh, this time literally - by the impact of 6 drops of this stuff. 3 drops in the morning, 3 drops in the evening and the next day was excruciating! I could hardly get out of bed, I was writhing in pain, taking a fair amount of pain drugs, exhausted beyond belief and unable to achieve any level of comfort or distraction. I was at a point that I just can't describe and if you're lucky, you'll never know the feeling. The pain was my entire universe; one I didn't want to live in. I drug myself outside to the backyard and decided to try to create something beautiful, despite my condition. I was going to hurt and be miserable no matter what. I could only carry 2 bricks at a time, but I slowly began to complete the outline of the labyrinth in my backyard. Every step was agony, I was unstable and dizzy, but I had to DO something.  After only a few minutes, perhaps twenty, I came back indoors, drank some water, went to bed, and slept for 12 hours.

That day, I took 4 drops - 2 in the morning and 2 at night. I had another night of waking up in breath-taking pain and was surprised again at the impact of 4 little drops. I still had an amazing amount of pain, mostly in my hands, feet and hips, but the difference that morning was that my pain wasn't so intense that it obliterated everything else. I could actually feel some excitement about getting back on track with my bug-slaying duties. I am so grateful for the simple pleasures! 

Today, I took one drop this morning and am suspiciously eying the bottle wondering if I should take one tonight. I read the label again today and noticed the suggested dose. I about fell off the couch. "Take one drop orally two times per week or as suggested by your health care practitioner." I somehow overlooked what a wallop this stuff packs!

In other news, I saw the immunologist at UVA today and totally loved the guy. He is following the same protocol as my Lyme doc in MD had suggested - to give me a pneumonia vaccine and re-check my immune responses in a couple of weeks. He also took scores of vials of blood. More than anyone else so far in one sitting. Although he is doing all kinds of testing, he thinks it likely that I am in the 3% of the populace that shows very low immune numbers, but their systems function just fine. Either that, or he's caught me in the middle of an immune system crash. I can't remember the words he used, but I'll inquire more once we know something. We shall see.

Delightfully, a new bed is finally making its way into my home after years of knowing how desperately I needed one. I have finally taken the plunge and truly hope I made a good choice. It will likely be here before the end of the week. Oh! And speaking of the weekend, I'm going for my first rife session on Sunday! I'm totally exfrighted! Again, I don't know how long before the herx hits. I would guess the next day unless it's super powerful like the IV Rocephin was for me a decade ago. That hit within hours and hit hard. It will be interesting to see what happens. Thankfully, she's close enough that I'm not too worried about getting there and back.

So much is happening on the healthcare front, it's amazing. I'm feeling very blessed and lucky to have encountered the people that I have along my path. It's so good to feel optimistic and have clear next steps even though it's also easy for me to get overwhelmed by the enormous to do list with doctors and insurance companies. What a drag.

Alright Lymies, stay tuned and I'll tell you how things go. I hope that my experience is helping someone out there somewhere along the line. It seems there is no one remedy that works for everyone which is another challenging layer to this whole crazy business, but the information really helps in making empowered decisions since, as my partner would say, "I'm not a doctor, but I play one in real life."  Such is the case for many of us battling tick-borne diseases. 

The new doctor looks extremely promising!

I am psyched!!! I wasn't sure my health team could get any better, but I think it just did. I am cautiously optimistic. I had a phone appointment with my ND on Saturday morning and had her new treatment plan in hand when I saw the new Lyme doctor closer to home on Monday. I liked her the moment I walked into her office, which was more like a lovely, inviting living room, and she hopped up on her treadmill at her stand-up desk and began to walk in slow motion which she continued for most of the consultation while making notes on her computer and being amazingly engaged, knowledgeable and aware. She put me instantly at ease. I felt understood and seen without trying and let me tell you, that was super cool and had such a delightful lack of energy expenditure involved, that I felt cared for and able to relax almost immediately instead of being on the defensive, which is often the case.

I've probably forgotten some things and the treatment plan is in the mail, but here's what I can remember so far:

Here's what my ND prescribed:
   At first, she felt very strongly that I get back on, and stay on for the foreseeable future, the A-Bart tincture. Even if it was just in very small doses. She changed her mind later on and said to wait until we had my digestive system calmed down and for now, to stay on the homeopathic New Tick Bites Balance II as my only TBD (tick-borne disease) drug.
   She is sending a probiotic that I can take orally and not in pill form since pills and I are not getting along these days. She said it's just 1/4 or 1/2 teaspoon and it tastes good. Right on. That will be helpful. 
   She suggested castor oil and heat compresses over my liver.
   She wanted me to start sessions with the rife machine ASAP and work up to using it once daily. She was adamant about this therapy and certain it would help me tremendously. She's rarely wrong.
   She is creating a gemmo therapy for me that includes oak and I can't remember the other 2 plants. I love those things! I told her it's like drinking a green blood infusion and she said she's using that description now.
   She highly recommended someone grocery shop and prepare food for me so that I can eat 3 healthy meals daily. I have far less nausea, vomiting and appetite loss when I am away from home (indicating perhaps an environmental allergy) and when I have 3 healthy meals a day (which also only occurs when I'm away from home and others cook for me.) She said she feels very strongly that the stress of shopping and preparing meals is not conducive to healing and she wanted that stress removed from me. As soon as she said it, I realized how right she was. My partner doesn't cook much and I'm not usually up to the task, so I've been living off of apples and peanut butter for the main staples in my diet. Knowing that I'm limited in this regard and can't afford a personal chef, I decided to invest in a decent smoothie maker and picked one up along with some frozen and fresh organic fruits, seeds, coconut milk, sunflower seed butter, and other goodies to blend. That feels pretty good. I feel a sense of liberation and freedom that I can easily prepare something healthy for myself besides my beloved apples and peanut butter that have sustained me for so long.

Here's what my MD prescribed:
   At first, she wanted to start me on Buhner's protocol which I have heard of, but am not familiar with. I looked it up after I got home and it's sort of funny going back to where I started initially using teasel and cat's claw along with some other herbs. She would likely add antibiotic injections.
   She ordered scores of blood tests that included something about looking at my genetics and immune system since two of my siblings also have autoimmune diseases. 
   She gave me the name and number of a man in my town who is a "certified indoor environmental consultant" and told me to make an appointment with him ASAP and to get out of my house until he can check it out. 
   She recommended I take 8 capsules of activated charcoal at night before I go to sleep to draw out toxins. Of course it negates all my medications, too which is why she suggested it at night. I'm reluctant to do this because I feel like I might neutralize drugs with a cumulative effect that I'll have to rebuild and I'm not sure I can sleep through the physical pain and restlessness, but I think I'll give it a try.
   She ordered what she called a "poop test," and mostly agreed with my ND on her protocol - and here's where it got really great - my MD prescribes and carries the same holistic remedies as my ND! How cool is that? Interestingly, my new MD said to restart the A-Bart even if it's just 1/2 a drop a day, or whatever the minimum amount is for me to avoid a herx. She felt my ND was right the first time and we need to be killing some bugs, so back on the A-Bart I go. 
   She also has the philosophy that a herx means you're killing too many bugs at once and that it isn't good for your body to have that level of toxic overload. It can be dangerous and even life-threatening to overdo it. She said she also understands the feeling of satisfaction one gets from having a herx because they know the bacteria is dying. It's a strange thing.
  
And I kind of fell in love with her when I saw and heard her response to me telling her I felt like I was in total treatment failure and was considering getting a rife machine. She grinned and knowingly shook her head, obviously biting her tongue. She continued with my intake questions and did her educational talk and came around to alternative treatments. She said the rife machine is not FDA approved so as a doctor she would never, EVER tell me to get one or use one. She would NEVER recommend that I buy a machine...like the one she has in her basement. Never. I cracked up! Much later in the conversation she said she herself herxed from using a Doug Coil machine (thanks for the name that she can't recommend! she's good!) and said she totally understands using whatever kills the bugs. 

When I explained that I felt like I needed to try a PICC line again if the rife machine isn't enough, which is her philosophy as well as the doctor's from the youtube video I posted recently, she said she agrees they can be really effective but she can't do them or manage them and they are a bit scary and dangerous. She said it might be worthwhile to do IM injections of antibiotics twice weekly but again, agreed with my ND that we needed to get my gut cleaned up and give my liver some support while we await this next round of test results and figure out our next strategy.

The last thing I'll say about her for now is that she acknowledged the healing strategies of chemical warfare and that it was also clearly not working for me. She has another strategy and for that, I am deeply grateful. I don't feel like I'm at the end of the road or without hope. She is shining a light for me and I am deeply grateful.

I look forward to seeing what the indoor environmental consultant has to say. I swear, this stuff is like living in a detective novel only the bad guys live inside me. There are so many mysteries, puzzling things and threads to chase. It's all pretty fascinating from an observational perspective. 

The good news of the day is that hope has been restored, some of my beloveds are bringing me food, others are helping me organize fundraising for a rife machine and treatment costs, I have clear next steps to take, and it's firefly season in Virginia and beautiful beyond words. 

Check her out! I think she's very cool.

http://www.youtube.com/watch?v=jAYstUm1NI8 

A great overview of Rife machines to treat Lyme!

I thoroughly enjoyed a youtube video (see below) on treating Lyme and co-infections with a Rife machine. This doctor is a delightful, engaging teacher and knows her stuff. Read on, Lymies, especially if you Rife! She mentions toward the end of the video the ineffectiveness of many of the cheap Rife machines on the market that are unable to produce frequencies strong enough to penetrate deeply into the body. She also gives frequencies to use for Lyme, Bartonella and Babesia (all of which I host) and cautions against overuse since the die-off (herxheimers) can be life-threatening as the dead bacteria flood the liver, brain and nervous system, exacerbating the symptoms exponentially. Oh, goodie. 

Actually, as twisted as it sounds, I am excited!! The caution here is not to stop and start the treatment, but to stick with it. My ND suggested I start Rife treatments immediately ("tomorrow, if you can") twice weekly, being careful not to overdo it so the herxing will be manageable. She said my goal is to work up to using it once daily and that I tested strongly positive for this therapy. As with other bacterial infections, stopping treatment too soon only kills off the weak bacteria and refines the strong ones. Sadly, that's my current state since I'm having treatment failure for late stage Lyme. I need a bug killer quick! 

The closest Rife to borrow is in Lexington, VA at an attorney's house. We met online through the woman who sells them and he offered me use of their machine any time I'm in the area. His wife had total treatment failure until she found the Rife and the benefits of colloidal silver. He claims they have helped more than anything so far. Since that's where the new Lyme doc is, maybe I can layer tasks here. I can't imagine driving over an hour twice a week for these, especially if the herx hits quickly. I haven't asked about that bit yet; when to expect to get knocked down hard, and looking forward to it. 

Here's the video. She's very good at explaining TBD's and killing strategies thereof. If you want to understand this crazy thing, watch this. She's entertaining, informative, smart, and cute.

More ER visits - what a bummer

(I saw this t-shirt on Etsy some months back and loved it!)

Back to the hospital, jiggity jig. This is getting ridiculous. I've about had it with trips to the ER in excruciating pain and uncontrollable vomiting. Fortunately, I have a phone date with my ND tomorrow and see the new Lyme doc on Monday. It seems I won't be able to avoid the Gastroenterologist, as much as I'd like to skip that entirely. At this point, I'm up to 4 ER visits in the last 10 months and I'd like to be done with that now. Hyperventilating from pain exacerbates pain. That's just wrong. Right?

I'm still unable to take the "anti" drugs; my pain and fatigue levels are still rising. I'm finally scared, really scared about what comes next. I'm still losing weight and struggling with appetite loss, nausea and gastrointestinal distress in new ways. I'm exhausted. Lying in bed yesterday, I wondered if I might die from this. I hadn't really thought about that before.

I sincerely want to thank all of my cheerleaders, because without you I'm afraid I would be consumed with despair. Somehow, with you all pulling for me, it gives me courage to take another step, try another cure, search for better help, and stick with the healing process.

I've been in contact with the woman who has the RIFE machines and she's still willing to let me try it out, so I'll make a date with her as soon as I physically can. I hope this helps. I'm not sure I can stand another disappointment right now. 

Thank you to my fundraising team (I can't believe you peeps!!) Thank you to my SiStars and spiritual family who keep my healing grotto full of pure, clear, healing, magical waters. Thank you to my healthcare team for all the steps you've taken outside of normal and for listening to me. I can't imagine what it would be like to have my reality denied like so many others who suffer from this disease. 

As long as I can count, I'll count my blessings. Gratitude and love are amazing forces that I want on my side, so I shall pour them out and let them gush from me to heal that which is around me. For I know the great mystery. 


Now, to take a lesson from my cat and try to relax...

Treatment Failure

Well, this is depressing. I've been taking my ND's digestive aids and feeling pretty good until yesterday when I reintroduced the drug Tindamax (or Tinidizole) in a half dose: half a pill in the morning with breakfast and half a pill with dinner. 

I woke up all night long with unbearable back pain (where did that come from? I think it's too soon for a die-off) and this morning I'm staring at my coffee, wishing I could drink just one cup, but the acid reflux and nausea have already kicked in. I'm reaching the conclusion that my time with oral drugs is drawing to a close and I'm a little terrified. It seems my body is just saying "No!" and I have to respect that and figure something else out or come up with a management plan.

Now admittedly, I am wildly impatient, a testament to my fiery nature, and I also reintroduced teasel, the A-Bart tincture and the homeopathic remedy "New Tick Bites, Balance II." I assumed they would be less of an impact, but perhaps I've assumed wrong.

Back to the starting line, so here's my new plan. I'll drop the Tindamax again and go with the tinctures and homeopathics and see what happens. If that goes OK, I'll give it a week and try the Tindamax again. I'll find the culprit one way or the other.

I've definitely decided to try the RIFE machine. I've collected more information from people suffering from TBD's (tick-borne diseases) and the success stories are hard to ignore. I think I'll have my first session later this month or early July.

I also see an immunologist at UVA in July and the new Lyme doc in 12 days. I hope and pray someone has workable solutions for me. This is one of those days that I'm staring at the pit of despair and trying not to fall in. Send the good goo, peeps!  I could use it!

I'm singin' the Spirochete Blues, Baby!

Another month has rolled by with continued nausea and without antibiotics and no usable help from the Lyme doc in Maryland. When I told him about my double ER trip last month, my concerns about my symptom exacerbation and continued nausea, he mumbled "Well, you have to take the antibiotics!" then later in the conversation: "Well, see a GI specialist then" which if I took that advice, would be another couple of months without antibiotics to get a referral from my PC and get on the wait list for a specialist. Not an acceptable solution. The last 2 weeks I have hit levels of unmanageable pain and unbearable fatigue generously slathered with weird neurological symptoms, night sweats, and stabbing pains in my head. Staying off antibiotics isn't an option unless something else can stop this runaway train.

So what's a tick bit chick to do? Well, since my guess seems to be as good as anyone else, I first went to the pharmacy and chatted with Tom. He's my pharmacist and I just love the guy. I told him that I was pretty sure I had become sensitive to taking Dexilant (an antacid that I take first thing in the morning) on an empty stomach and that it was the current culprit in triggering my morning nausea. Warnings on the bottle said not to chew or crush but also said it could be sprinkled on food which is confusing, eh? Tom tells me that it's the pellets on the inside of the capsule that need to stay intact and I could try sprinkling the pellets into yogurt or something. I asked if I could just pop the pellets in a bit of water and he said no problem there. Today was the first time with this approach and it's too soon to tell (I took Zofran, just in case) but I think this is good.

The next thing I've done is contacted my amazing Naturopath in Wisconsin and reordered all the digestive healing aids she prescribes - digestive bitters, Rhizonate, probiotics, and digestive enzymes. I had forgone them the past few months hoping I could get away without the expense, but at this point I don't see another reasonable choice. We had our 2012 taxes done and spent over $11,000 in medical expenses. We surely can't keep that up, but at least we got the write-off.

So my current plan, god-willin'-and-the-bile-don't-rise, is to start all the happy tummy supplements for a week and slowly reintroduce the 3 different antibiotics and antimicrobial drugs. Perhaps a slow intro will also reduce the chances of a horrendous herx when the first die-off hits.

Speaking of which, I took a bath last week. It wasn't a hot bath, it was comfortably warm and relaxing. However, about 30 minutes afterwards I was writhing in the worst joint and nerve pain yet and the 30 mg oxycodone wasn't touching it. This lasted for 6 solid hours and was exhausting. I googled it the next day and sure enough, too much heat can cause the bacteria to die, creating the herx. Geez. That's just mean, if you ask me.

Also, I stumbled across an online interview with a Lyme doctor who is about 30 minutes away, as opposed to 3 hours away from my current doc. She sounds pretty amazing and like she uses a combination of western medicine and diet/exercise regime that she has tailored for Lyme patients. I'm seeing her next month. I'm not sure I will transition to her care, but I feel obligated to seek the best and most sustainable care that I can.  She takes insurance, too.  Whew!  That's one less nightmare.

When I called her office, her assistant said she wasn't taking any new primary care patients and I followed my intuition and asked "Well, what about new Lyme patients?" and got an appointment.  YES!! One must know the secret handshake in the messed up medical system.

Finally, I've done a little more reading up on the RIFE machines and I think that's the route I'd like to take in conjunction with my standard care. These things sound pretty amazing or like snake oil depending on my mood, and I have been offered free use of 2 of them - one in Lexington and one in Afton - from people who claim to have either cured themselves or are finally being cured by these. It makes sense to me. The next time I have $2,000 to spare, I'm getting one. I've actually thought about doing a fundraiser for one, but can't quite wrangle that for myself. Maybe I'll ask for help.

Grateful for my life, friends, therapist, health care team, family, and sense of humor - and wildly committed to my optimism and healing.  Thanks for reading!

Penelope's rant began something like this:

"3 days in the Underworld isn't fun and I'm pretty sure my story of suffering didn't have one of those happily-ever-after endings or one of those mythical, mystical gratification endings like Jesus, Inanna, Osiris, Horus, and others got after their 3 days (you know, like saving humanity, becoming a llama-goddess, achieving immortality, stuff like that.) Oh! If only those 3 days could have done something miraculous for humanity, or llamas, or the planet, or transformed me into Willow 2.0 (ahem, I mean Penelope 2.0!)... something - anything - Oh, WHERE is the silver lining behind this ominous dark cloud?"  * dramatic sigh * 


Penelope, or Penny as my darling partner calls her, is my drama llama for those of you who have never met her - it's a long story, but just go with it for now. She can be very enthusiastic, inspired, victimized, indignant, and generally dramatic about stuff. And yes, she is me, but only one facet of my complex personality (Pssst! Don't tell her that, though. She wouldn't like feeling minimized!)

She is normally a gentle and quiet llama, but when she gets pushed too far, she lets it all hang out and goes on these rants. I gave her the first paragraph of this post to be a sacred witness to the not-so-pretty bits of myself on this journey and to remember the value of humor, especially when I can genuinely laugh at myself and the 3 days of hell I just endured.

Last Wednesday I got up, excited about the morning and getting into the yard. Within a few minutes, I was throwing up violently and started developing that burning breath-taking pain just under my ribs that drove me to the ER in California last August. It's a ferocious pain that is unfortunately exacerbated by breathing, making it wildly painful to take a deep breath and nearly impossible to not hyperventilate. In fact, I couldn't stop hyperventilating until IV pain drugs kicked in. But how could this be? I had not been taking the antibiotics or other harsh pharmaceuticals that I assumed caused that bout last year. My melt-in-the-mouth Zofran tablets had no effect and after writhing in pain for a few hours, unable to manage my nausea and realizing I was helpless to shift the tide, off to the ER I went, thanks to a neighbor's lead foot.  All of my blood work came back normal.  Random nausea and vomiting, says the doctor and off to home I go. Of course, this took the entire day but I was so relieved to be out of pain, I was OK with it.

Thursday I woke up with the beginnings of a migraine.  Seriously?! What kind of gauntlet am I running here, I wondered? I took the new migraine medication and was wiped out for the day, but managed to hold down what little food I ate. I stayed in bed in the dark.

Friday I woke up, excited to be headache-free and about my morning rituals of coffee, rocking chairs and reading with my love. Within a few minutes, I felt like I was in a rendition of the movie "Groundhog Day" and I was back to the violent vomiting and wild, burning pain and off to the ER again. My family doctor said it sounded like gall bladder and as I expected, the ultrasound was normal. They decided to order an H. Pylori test and after I got home, realized my Lyme doc already had one done and it was - of course, negative.  Oh Lyme, you are a fun, fun dance partner. Always mysterious and elusive.

I made a few posts on Facebook about my experiences and got a message from another Lymie friend asking if I felt this was related to my illness. She said the exact same thing happens to her, all of her blood work and other test results are normal, same as mine, she has a sub-fever, same as mine, and the only thing that alleviates it is a big dose of pain killers, same as me, and it seems to be random attacks. Strange, strange indeed.  What does it mean?

Here it is a week later and I finally feel stable. However, I'm still not taking any of the bacteria killing drugs and I'm not sure where to go from here or what to do next. My family doctor made referrals for me to see an endocrinologist and an immunologist at UVA and those appointments are forthcoming. Hopefully, more light will be shed and more direction will be clear. 

Even if I can get better treatments, I'm not sure I can afford them. I saw today that a friend of mine has a fundraising campaign going for her medical costs.  What a crazy disease and crazy times to have it. I feel like I'm floating in an abyss and have no idea where I'm going or how I'm getting there, but hopefully it ends with my health restored.