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.