Remission! Woot!!

I believe we have a winner! Sierra Integrative Medical Center has done it again and apparently that isn't big news for them.

I am in remission!! After almost 20 years of illness, several of which were completely debilitating, I feel great and like I am no longer the roadside motel for infectious tick-borne diseases. I have learned a lot and I'll share my findings with you hoping for your recovery, too. (At some point, I might share my status updates here from my Facebook page that chronicles my journey at the clinic. If you're interested and can't wait, find me on Facebook and send me a message that you found my blog and want more info.)

1. No one treatment works for everyone.

2. All auto-immune diseases appear to have a similar root cause: toxic overload (environmental, mold, allergies, food, water and air quality, etc.)

3. People with auto-immune diseases  need help detoxing - and likely always will.

4. Alkalizing the body is a smart thing to do as it creates an unpleasant environment for harmful bacteria. Eat alkaline foods, drink lemon water and I find a bath with apple cider vinegar in it to be a nice addition (it's also a miracle worker on joint pain.) Drinking apple cider vinegar is amazing but might cause herxing when Lyme is coupled with severe candida.

5. Avoid pharmaceuticals as much as possible, seeking alternative therapies, herbs and other support for the body's systems. Many prescription drugs only mask symptoms while compromising the liver - which is already overworked - and often don't actually help the body to heal itself. Massive antibiotics are going to cause more harm than good if you don't support the body in eliminating the dead and dying bacteria and get the good bacteria back in your digestive system.

6.  Excellent gut health is essential to healing from any auto-immune disease. Pharmaceutical antibiotics will make that goal really challenging as they will destroy the good bacteria. Probiotics can help, but I'm sure they're limited in the face of the probioticyde of modern drugs. If I had known that I could find a cure without western antibiotics, I would have NEVER taken them for Lyme and co-infections. I did the oral arsenal for years and had 2 PICC lines. I'll be batting clean up on those choices for awhile.

7. Clean up your diet - eat organic whole foods and drink lots of clean water (divide your weight in half and drink that many ounces daily) and eliminate as much sugar as you can stand to and then a little more. Traditionally inflammatory foods are a good idea to toss. You can reintroduce them as you begin to feel better and see if you react badly to any at that point. This includes refined carbs, glutens, alcohol, sugar, eggs, dairy, and many more that a google search will quickly reveal. It might seem overwhelming right now, but it is SO worth it to monitor the effects of food on a compromised body or at least get a food allergy test and start there. 

8.  Find the most effective and gentle detox protocols that work for your body and do them weekly, paying especially close attention to the liver, gallbladder and kidneys. There's a great list here: Detox Methods for Lyme. Some of the most effective for me are listed here.

    A. Antihistamines (I am currently experimenting with natural and herbal remedies)

    B. Coffee enemas

    C. Castor oil packs and liver cleanses

    D. Activated charcoal

    E. Colon hydrotherapy

    F. Lymphatic drainage

    G. HEPA air filtration and mold elimination

    H. 60 ounces of lemon water daily (I juice a bunch of lemons every 2 or 3 weeks, freeze

        the juice in an ice cube tray, dump the cubes into a container in the freezer and use

        one cube per pitcher of filtered water daily.) 

    I. Apple cider vinegar

9. Most of us have allergies and sensitivities we never knew we had to chemicals, heavy metals, molds, and foods. All of these impact the immune system's functionality and must be dealt with to free up the immune system to do it's bigger job of fighting disease. Otherwise, it's so overwhelmed with stimulus it doesn't know where to begin the fight and Lyme is excellent at hiding inside of cells and faking out the immune system.

10. Neurofeedback and a good attitude can speed up recovery exponentially. Neurofeedback, in my opinion, should be the first stop on any health block whether your ailments are along the lines of mental health (PTSD, ADD, depression, anxiety) or ANY physical conditions. The research coming to light around this technology is astounding. Successful drug-free treatment that ends lifelong dependence on pharmaceutical drugs. It's nothing short of miraculous. Check out EEGInfo to find Neurofeedback providers  and learn more about this amazing technology. It was a total game-changer!!

11.  Finally, I will admit that I am researching facilities in my area that will do integrative detox IVs. I think I found a place in Nellysford, VA. This is something that I want available. I feel like there's a good chance that my body will get behind the 8 ball again with detoxing and I don't want to have a setback, flare up or reinfection. I also live in an area with a lot of ticks and tick-borne diseases so the chances of a reinfection are high.

I witnessed a few people coming back to the clinic while I was there, most of whom had been Lyme-free for years, who came back for 2-5 detox IVs because they felt their immune systems getting a little sluggish. My current regimen of detox is extensive and I spend a number of hours each week actively detoxifying my body. This will be a life-long health management system for me. 

I'm glad to be out of the proverbial woods. It took me awhile to realize that I'll never be "done" with a compromised autoimmune system and I had to feel the sadness of that for a bit, but now I'm over that. I realize that I have several new chapters in the owners manual for my body and the more I know, the better I can care for it and keep it cruising and running smooth.

Best of luck, everyone! Thanks for following my journey through these maddening years. Good health and happy immune functions to you all.

ALS, rheumatoid arthritis, lupus and others - there might be help for you, too!

In my earlier post, I did not mention the other auto immune diseases that this clinic is addressing. They are great at assessing various stresses on the immune system and then treating the patients with homeopathic, Chinese and western medicine practices specific to their needs. They check for food allergies, heavy metals, chemicals, and molds. They do extensive blood and urine testing to understand how the body is dealing with the stress and how to restore it to balance.

Because of really irritating political pooh in the pharmaceutical controlled healthcare marketplace, dark field microscopes cannot be used to diagnose conditions. They are only slotted for use in research. After seeing what these things can show us about our bodies and the health of our blood, I think that's a sin, if ever there was one. I won't jump up on that soapbox now, however.

One of the patients in the daily treatment room (which quickly becomes a temporary family of people suffering in many of the same ways creating a strange intimacy and uncanny familiarity) suffered from ALS. He started treatments just before I did and ended just before I did. We sat in the same room most days and had several conversations. I watched him go from struggling to get words out and completely depending on his electric scooter, to having lengthy conversations with many of us and shuffling on his own feet to the bathroom. I don't know how he is doing post-treatment, but from what I witnessed, I think it's worth mentioning.

Lyme is the infectious disease of our time. If you've ever wondered if it's just in your head or wondered why you feel badly or don't understand your auto-immune disease diagnosis, I STRONGLY recommend getting dark field microscopy done. You can get it done for free at Sierra Integrative Medical Center. Just make an appointment if you're in Reno, NV or willing to go there. 

If you have a serious auto-immune disease, you owe it to yourself to understand what is happening to your body and how best to heal it without pharmaceutical drugs that often mask symptoms, cause liver stress and other icky side effects and don't actually heal you.

I just might have found a cure!! Sierra Integrative Medical Center

If you have been following my blog, you've probably fallen asleep waiting for my next post. I will endeavor to catch you up to speed, dear reader (without putting you back to sleep.)

You might remember that my doctors and insurance company set me up with 60 days on a PICC line in July/August of last year. I was given the same drug (Rocephin) that had given me some relief back in 2003, but for 2 months instead of 3 weeks. I was optimistic!! (Sometimes I think my optimism would kill me if it didn't keep me going - suffering disappointment has been an all-too-familiar part of this journey.) 

Well, the PICC line came and went with a bit more suffering and very little to show in the results department. Disappointed is an understatement. I was terrified that there was no help to be found and that this would be my new normal. 

But then some really crazy stuff happened!! The multiverse opened up and exploded with help from sources I would have never imagined and while it's still too soon to tell the final result, I think I've kicked the unkickable bug!!

One of my partner's health care practitioners told him that a patient of his - a teenage boy - had struggled with Lyme for years and had found a potential cure. He knew the clinic was out west somewhere. I asked my partner to ask the doctor to ask his patient (yeah, it's like that) for the name of the clinic. After several months of waiting for my partner's appointment and then for the other people to come in, grant permission, HIPPA bits, you know the drill, I got the name of the clinic. I went to the website and had many questions. Now I wanted to talk to the people, so a few more months passed in the waiting zone for contact information which finally arrived.

I called the clinic and the mother of the teenager on the same day in late February or early March. Within minutes I had secured an information packet from the clinic and a date with the mom from Harrisonburg. She came to my house and went over the treatment, costs and other information. I think I cried 3 times in the 45 minutes she spent with me. Hope was reborn and I was grateful and scared it would lead to disappointment again.

I made an appointment with the clinic with no way of getting there or paying for the treatment but I could see myself there regardless. The first appointment they had was in late April. I had my disability hearing in March and hoped I'd get the insurance and be able to afford the clinic but no word came about the decision as the date approached.

In talking with my mom, she felt that I should get the treatments regardless of the disability decision and graciously offered to pay for it. I burst into tears on the phone. I am unaccustomed to receiving this kind of generosity. This journey has felt very isolating and lonely. My mom's gift was the beginning of tearing down those walls. Afraid to hope, I made my reservations and began to prepare for 4-6 weeks away from home which in itself was mind-boggling and overwhelming.

At the end of April I flew to Reno, NV with my cat familiar Pi and on April 27th, I entered the clinic that would be my home for the next month and a half. One of the first things they did after loads of paperwork was to take one drop of my blood and put it under a dark field microscope. It was like watching some horrible alien horror film. There were hundreds of spirochetes in one drop of blood! I watched them hatching from my RBCs and they were happy and plenty. I was simultaneously grossed out and elated! I wasn't crazy. I wasn't alone. These people KNEW stuff!

The treatment was holistic and really hard! IVs and shots every day, 6 days a week. After about a week and a half of detoxing, the "pushes" started. These were intravenous injections of a chlorella-based medicine that forced chills and fevers, stimulating the immune system to kick some major Lyme and co's booties! These were also done 6 days a week for about 5 weeks, the average goal being 20-25 pushes.

While this clinic specializes in Lyme, they are immune system geniuses and treat all auto-immune diseases with pretty great success. This is a link to their site, specifically testimonials (you can also watch videos if you hover over the tab.)  http://www.sierraintegrative.com/testimonials/

I already knew that people who suffer from chronic Lyme have a gene mutation that limits the body's ability to detoxify. What I hadn't realized is that this would mean I have to incorporate detox protocols - aggressively - for the rest of my life if I want to stay well.

I am still undergoing extensive treatments post-clinic that involve a whole lot of shots, supplements and detoxing protocols. The shots are hard, some are painful and there are many, but the hope of a better quality of life keeps me going. They say that 4-6 months after the clinic is when the real miracle happens if patients continue their home care. Right now my adrenals are struggling to recover as are other parts of me and it's all about not overdoing it and allowing this slow recovery to complete. However, I can tell you that I don't feel infected and I no longer feel the consciousness of this bug plotting to overthrow my body government. (Yes, I'm knocking on wood.) 

I met several people who were treated at this clinic who have been symptom-free for years. That in itself is not only miraculous, but by far the best pitch I've heard for treatment of this nasty bugger. I'm on the road to wholeness!! What I have learned about Lyme and immune system functionality could fill a book.

Here's the dark field photos spaced 2 weeks apart. In the first shot, my RBCs are misshapen, show liver stress, allergies and a ton of spirochetes (where it looks like a sperm penetrating an egg - that's actually a hatching spirochete!) It's pretty amazing. I could write so much more, but I'll leave it for now. Enjoy your life and celebrate the gifts!

"I healed it through the PICC line,
Not much longer will this be mine
Yeah, I healed it through the PICC line,
And I’m just about to lose this Lyme
Honey, honey, yeah"
      - Submission from a friend responding to a request I posted on Facebook to help me 
        re-write the lyrics to Marvin Gaye's "Heard it through the Grapevine" and turn it into 
        a healing song for me.

I am finally ready to post an update here and so much has happened I hardly know where to start. I will strive for brevity with impact, but make no promises to do a good job editing this post. 

Since my last entry, I've managed to get my home cleared of toxic mold and am living indoors comfortably as of November 2013. I still keep a HEPA filter running 24/7 in my bedroom and for the most part, my nausea and acid reflux are gone most days. That in itself is amazing! I no longer live in daily fear of another trip to the ER, at least not for this issue. That whole process was entirely counter-intuitive. Our house was freshly painted, no signs of mold, no smell of mold or mildew, no moisture in the walls. I would have never thought we had a mold problem. I am so glad Dr. Harbor knew about Dr. Shoemaker's research and then considered it's effect on Lyme sufferers. The Biotoxin Pathway

People with chronic Lyme, if there is nothing else you get from my blog, please get this: If you can't get over Lyme you are likely also developing (or exacerbating) problems clearing biotoxins (mold, scented products, gasses, etc.) even if you've never had a problem before!! There is a DNA test available to check your susceptibility to chronic Lyme and biotoxin detoxification problems. If you fall into this category (and my Lyme doc believes all chronic Lyme sufferers do) to heal the Lyme you must do the following:

1. Remove the biotoxins from your daily environment. Use a respirator when necessary. An industrial air scrubber, Swiffer wipes and a HEPA vacuum will be your best buddies. Scrub down all walls, surfaces, curtains, nicknacks, anything exposed with a solution of borax, hydrogen peroxide and water. HEPA vac all other furniture, rugs and carpets.
2. Learn ways to increase your body's ability to detox. This is super huge!! Some of the top methods are on this website and well worth a look. These detox protocols are excellent for non-Lymies, too. Tired of Lyme
3. Give your body 1-3 months of clearing the toxins you've been exposed to over time, using detox protocols religiously. Once your environment is clear, it gets worse before it gets better as the body offloads stored up toxins. After 3 months, more or less, you should feel much better.
4.  After 3 months, reassess and treat Lyme and co-infections if necessary. (Sometimes the immune system can bounce back after steps 1-3 and get the Lyme under control with little to no further treatment.)

For me, it took some doing getting back into my house! I hired a woman trained in hazardous material removal to come in and scrub down our walls and floors with a mixture of borax, hydrogen peroxide and water. All exposed fabric, coats, curtains, everything, was washed and bagged or HEPA vacuumed if it was too big. All exposed cardboard and paper products were removed, cleaned or replaced. It took several hours over some days to complete and we still haven't done the basement. I use a respirator when I need to go down there.

I've had a few treatment failures, the last one being in the spring of this year. I also had another Lyme test after being cleared from the biotoxins and detoxing for a few months. I had the same positive band in both tests that my 2012 tests showed, which indicated I'm still infected and just as I suspected, probably not with Lyme anymore but one of the co-infections, most likely Bartonella based on my symptoms. 

Due to the latest test results and my treatment failures, my GP got approval for a PICC line and antibiotics from my insurance company. That's a bit like touching a unicorn. It just doesn't happen. What a miracle! Again, without persistent doctors, cheering friends and just plain stubbornness, I wouldn't have gotten to this point.

There was a time last year when I thought I might die from this disease. When I remember those times lying in bed too sick to move or even get into pajamas, wasting away, dashing off to the ER all too often, living with constant visceral fear, I realize I am getting better every day. I feel like I'll jinx myself if I speak too soon, so for now I'll just say I'm half way through my IV treatments and I'm feeling optimistic.

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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!!