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.

Emerging from the abyss but still twitchy...

What a roller coaster ride this has been. I hardly know how to recap my latest excursions in the realms of TBDs, insurance companies, doctors, medicines, disability claims, and when possible, house work.  (Therein lies a tragedy already, no?)

I drove up to MD to see my doctor a couple of weeks ago. I decided to skip the luxury of a motel room (it's a 3 hour drive, one way) due to our rapidly decreasing finances along with the additional costly burden of prepaying for everything, then filing my own insurance claims with my fingers crossed that I'll be reimbursed for my Lyme doctor and my therapist's bills.  (My Lyme doctor decided to no longer take medical insurance to avoid being harrased for treating patients like me.) 

I came home from that exhausting day (a 3 hour drive, a 1/2 hour wait, a 2 hour appointment, another 3 hour drive) and fell into bed, relieved that my doctor had emailed my prescriptions to the pharmacy, making one less stop I had to make before I could finally collapse and start to recover.  

It may have been the intensity of the day, my energy expenditure, the timing of the maturing bacterium, the distressing news that I received, or perhaps a combination of these things but, whatever it was, I went down for 12 days and I mean down.  I could hardly get out of bed. I writhed in pain during the day and sweated and froze my way through the nights. When I didn't think it could get any worse, I got an excruciating migraine. Wow. I felt shockingly, frighteningly vulnerable and I think I really scared my partner. We're both feeling pretty jumpy still.

So, the bad news from the doctor was blood test results showing a seriously compromised immune system, to the point that he was initially going to start me on IVIG treatments once a week for a year.

From Wikipedia: 

"Intravenous immunoglobulin (IVIG) is a blood product administered intravenously. It contains the pooled, polyvalent, IgG (immunoglobulin (antibody) G) extracted from the plasma of over one thousand blood donors. IVIG's effects last between 2 weeks and 3 months. It is mainly used as treatment in three major categories:

• Immune deficiencies such as X-linked agammaglobulinemia (XLA), hypogammaglobulinemia (primary immune deficiencies), and acquired compromised immunity conditions (secondary immune deficiencies) featuring low antibody levels.
• Autoimmune diseases, e.g. immune thrombocytopenia (ITP), and inflammatory diseases, e.g. Kawasaki disease.
• Acute infections.

Researchers are currently investigating the use of IVIG in early Alzheimer's disease, with encouraging results."

I'm still educating myself on what these numbers mean and am grateful (again!) for my naturopath and general practitioner. My doctor decided in lieu of the IVIG treatment, that we would first try the PICC line for IV antibiotics and see how that works for me (since I had good luck with it 10 years ago) with the hopes that my immune functions will bounce back when the chronic infection is gone. I can already feel the insurance company fight coming on and feel the hot sting of tears of frustration and anger at consistently having my reality denied.  I will endeavor to be the person I can be proud of through all of this.

Finally, I have received the expected and long awaited denial to my disability claim and now begin the appeal process. I expected this so I'm not feeling bad about it. My attorney is a very cool individual and is holding my hand every step of the way. If this doesn't work, I honestly don't know what we'll do. We certainly won't be able to afford my continued medical care.  Perhaps I'll take the advice of a dear friend and call my congressman.

I sure would love a local support group, so perhaps I can put some energy (when I have it) into creating one. I think it would do me a world of good.