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!