Set Backs Are Part of the Journey

I suspect many of you can relate to my title and this is an appropriate title as June came to a close and July began. Set backs are part of life for anyone, but even more so for those who are living with chronic illness. Vacation seems like it is in the distant past at this point. We spent a week in Mission Bay San Diego the first week in June. It was a truly relaxing and enjoyable vacation despite spending the entire vacation with a costochondritis flare up that is still hanging on over a month later. It was one of the worst flare-ups I've had in a long time and put a damper on some of the things we had planned, but the upside was that it truly forced us to relax. We spent plenty of time just chilling on the beach and I was even able to ride my beach cruiser for a few days thanks to Kinesio tape and my awesome hubby who is a chiropractor. Getting adjusted was either hit or miss on one day it would help while on the next it would flare me up again. We had several dinners with friends and family and even a lovely romantic dinner for two at a fabulous Spanish tapas restaurant. Paella... yummy! We even slept in almost every day. What a wonderful luxury. Ahhhhh..... We even had a couple days at home getting back on schedule before going back to the grind.

After a few days at home, the craziness which became June ensued. Elsa became extremely sick. She almost died. After five days of touch and go in and out of the vet and eventually in the ER overnight with a Neurologist consult, we discovered she has Meningitis in addition to all the additional illnesses (Demedox, Pyroderma, Spay Incontinence, andother UTI, Erlichia (Lyme related) ...) She is now on several medications and doing much better. We have since discovered that Meningitis is more common in Bernese Mountain dogs (of which is part of her mix) under the age of 12 mos. Good new sis that she is doing better and once she is off all the nasty meds, we'll be working on supporting and strengthening her immune system. She is really my dog. We're not sure how we ended up with her, but we did and we're so glad she made it through. Here is a picture of her with her goggles on while getting a laser treatment, which she seems to love. These treatments make her feel good.

About a week later, we learned that our landlord would be increasing our rent by about 11% with only a 30 day notice. Despite the fact that we have been good tenants that pay on time and take care of the house like it is our own and we've been here for 3 years, she emailed this decision to us telling us that she is essentially raising the rent because she can... AND yes she can... We frantically searched for a new place to keep our rent under control, but quickly realized after the unexpexted expenses with Elsa, we were in no position to take on the expenses of moving in 30 days, so essentially we are stuck. AWESOME!!! YAY!!

To add insult to injury, the same day of the email from the landlord I was told that two of our staff in the office I work in were cut to part-time, one more would be eliminated by end of July and my hours will be cut in half by end of July if our numbers as a whole do not improve. That said, it is not the end of the world and as much as I relish the idea of working part-time, this will bring financial hardship. Oh, Good... That was number 3 and I won't allow anymore hits. This is all my adrenals can take and being able to afford my health expenses will soon become a challenge on top of 2 of the most expensive months to date with my own health.

Needless to say the stress has been quite a wallop all at once and has been taxing on my adrenals. I initially thought that the widespread pain and exhaustion (among other symptoms) was my body's response to all that has transpired, but I truly feel I'm taking things in stride and it has been a while since I've experienced a herx and I truly believe I've been having a herx from my new protocol for the past 2 1/2 weeks. Lovely... The good news is that I only have about another 1 1/2 weeks until I complete the meds that I think I am herxing from. There is an end in sight.

Ahhh I know there is some nugget of wisdom I am going to glean out of all of this, but at the moment it all seems like some sick joke.

My spirits at this moment are unbelievably good in spite of all that has happened. I really wanted to share my comprehensive protocol in this post, but until I'm feeling better and I have a little less stress on my plate I think it is best that I hold off for now. I can tell you this that we are treating for biotoxins with Cholestyramine and Actos and my new doc is fairly confident that MARCoNS is part of my picture. Here are a couple of helpful posts, one on Cholestyramine and Actos:  Cholestyramine
MARCoNS

I'll keep you posted. Thanks for all your support and for those of you experiencing your own set backs, my heart goes out to you. Chin up! The best is yet to come.

New Doctor and My Plea for Help

YAY for wonderful doctors! I know that it is early to tell or judge, but I’m so happy with my new  doctor. I flew to Seattle to meet her for my first appointment. It was a beautiful 70 degree day in May. She is so smart and her ideas make so much sense to me. Though it has been a very expensive month, I think it will prove to be well worth it. I’m so thrilled that she sees the genetic piece as very key to my improvement. That is the way I see it too.  I’m so excited to keep you posted on my progress and will share protocols once I have a better understanding of how everything is playing out. There is one thing that my readers may be able to help me with. 

On a side note, my new doc would like me to take a specific probiotic that could really help me to improve the only thing is that it is not available in the US. It can only be purchased with a Canadian, Australian or German address. ANYONE willing to help? I will pay. Please contact me at Hashi.Madness@gmail.com

This probiotic could potentially make a huge difference in my life. I'd be eternally grateful to anyone willing to help out.

Our sweet baby Elsa...Zzzzzzz

We’ve had unexpected expenses with our new puppy, Elsa as she is turning out to be a special needs puppy with a lowered immune system (she had Demodox, UTI, and now Pyroderma and Spay Incontinence). Of course she is my dog. We love her and she is part of the family and we’ll get this all figured out and manageable, but in the mean time it has been some sleepless nights and a fair amount of frustration. I hope my adrenals don't fry. I know we’ll eventually be able to look back at this as a blip on the screen and she is going to turn out to be a great doggie.  Our other dog really loves her, though she really wears him out at times. He is 12, so he needs a bit a of a break from the crazy puppy from time to time, but all in all he is attached to her. We'll be getting her some acupuncture and Chinese herbs once she gets over her latest hiccup with Pyroderma.

So back to wonderful doctors and the debate of younger vs older doctors. Both have their pluses and minuses. I had been thinking… most of my doctors tend to be younger (30s/40s ish) and I have to say this, even though they don’t necessarily have the years of experience that older docs typically have, they typically have a fire in their belly and the drive to get to the root of things. If something doesn’t work they always seem to have a Plan B or they are willing to come up with one. This is not to say that there are not older docs out there how have the same fire in their belly. When you have a complicated chronic illness it is so important to have doctors who are willing and able to venture into uncharted territory even if it is a little uncomfortable. It can make all the difference in the world. I’m not saying that older docs don’t do this, but I think most err on the side of tried and true, but that doesn’t work for every patient, hence why I believe more and more that the genetic piece is so important especially the role it plays in chronic illness.  Okay, I’ll get off my soap box now and hopefully I haven’t offended anyone. I think both doctors young and old play a very important role. I feel fortunate to have the wonderful team of practitioners that I have.

I’ll be on vacation this week in Mission Bay. YAY! Cannot wait to tell you about it. I need some time to relax as May has been a very hectic month. Wishing you all a wonderful Spring and a great beginning to Summer!

Knowing When it is Time to Move on or Make a Change

It has been quite the month of change for me in so many ways. I had to fire one of my doctors and hire a new one. I gave my 3 year notice at work, yes you read that correctly, 3 year… I will be returning to school in the fall on a part-time basis for a Bachelor’s degree in Integrative Therapeutics and Wellness Coaching and I completed a brutally intense clinical fast. Few!

So, I didn’t come to the conclusion quickly or lightly that I had to let my Lyme doctor go. The truth is that this individual is a good doctor, but at this time in their life there is a lot going on personally (things that I as the patient should not know about, but that this person divulged to me) and I began to recognize that the doctor’s plate was too full to provide the quality of patient care that I’ve come to expect from any doctor. Doctors should never throw-up their personal frustrations on their patients. Everyone is human and I feel it is the practitioner’s responsibility to realize when they have too much life going on that it is interfering with quality of care… to be humble enough to know when to cut back on patient load, because it isn’t fair to the patient if the practitioner is unable to be fully present (and of sound mind). This is typically when a doctor’s ego comes into play and it is usually the patient that needs to take charge and call it quits. I began to feel uncomfortable as some things were beginning to fall through the cracks and I realize that Lyme is too complicated a disease to feel uneasy about the person in charge of guidance in that area. Sadly I had to part ways and did so as professionally as possible. I had hope for a similar response, but unfortunately I think ego got in the way and my former doctor tried to lay blame elsewhere and made some shocking accusations. This just served to solidify my justification in firing the doctor.  Good Lyme doctors are hard to come by and I initially felt trapped and destined to continue the doctor patient relationship that had become subpar. Fortunately I have other really great doctors who were able to make recommendations. It will be an expensive transition, but worth it. I will be flying out of state in a couple of weeks to meet with my new doctor for the first time. Once I meet with her face to face she will be able to provide phone consultations. I encourage those of you who may be questioning the quality of care you are receiving to listen to your gut and to have the strength to make tough decisions, because it is your health and you need to be comfortable with those who are caring for you. 

Giving my notice to my boss, although nerve racking, was a very freeing experience and I couldn’t have asked for a better more supportive response from her. She is willing to be flexible with my school schedule and we’ll communicate if it ever becomes too much. I’m so excited about school and thrilled that I am in an office full of supportive women on this next journey in my life. I cannot wait to help others with all the knowledge I will gain and I’m hoping to gain extra training in the area of genetics (nutrigenomics / epigenetics) as I believe this will be key in the growth of healthcare and wellness because it can be so personalized.

Last, but certainly not least was the clinical fast. I’ve done many fasts in the past that have been partial water/juice, but nothing like what I just completed. I started preparing for the fast by eating a raw/vegan diet with the exception of fish 3 days prior, followed by 3 days of juice, then 3 days of deionized water, followed by 3 days of juice and finally breaking the fast with 4 small meals of steamed veggies and then slowly and methodically reintroducing food. My vitals were constantly monitored during the water fast and let me tell you this fast was one of the more brutal experiences to go down in the books. I can say this, I would never do this kind of fast in my own home ever again for fear I would end up divorced or worse. My experience was very different from most and one that the doctors want to investigate a little further as some of my response/reactions/symptoms were not typical. That is typical for me – bucking the norm. ha! Leave it to me to throw off the standard. The first 4 ½  days seemed like a piece of cake and then the detox kicked in and I was a goner after that and not at all myself. I felt like I might go insane and the hunger pangs (not normal on water fast usually) were relentless and like nothing most of us experience on a daily basis. By the 3rd day of water, my blood pressure, pulse and temp had all increased (the opposite affect that this typically has on most individuals)… making my doctor nervous, but they started to come down by late evening, a good sign. Apparently depending on what the body is ridding itself of, the heart can become irritated. Good thing that almost everything normalized by the first day back on juice and the second day of food reintroduction. Being back on juice the first day was like regaining a whole bunch of energy, but then my intestines dumped a whole bunch of bile and it was diarrhea city until solid food was introduced. The diarrhea wiped me out. I went through a range of emotions, which is fairly typical and a range of symptoms. I won’t be doing this again anytime soon, but I am glad I did it. I reduced my toxic load and a nice side effect is that we’ve managed to reset my oh so sluggish metabolism. Thank goodness. My weight is finally moving in the right direction and I will keep you posted.

WARNING! DO NOT TRY THIS ON YOUR OWN. I was guided and coached and checked on by trained doctors. This is not for everyone. I’m a tough cookie with an unusually strong will power that was almost broken by this fasting experience…. But I did it and I made it through and I’m so glad.  We ran my labs and I cannot wait to get the results. Stay tuned!

Happy Mother’s Day and Happy Spring!!!! Here’s to you and whatever you are working on or changing in your life! I’m proud of you.

My Genetic Journey

I recently consulted with a doctor who focuses on functional medicine and biochemistry with particular knowledge in epigenetics and nutrigenomics. There are very few individuals with this type of expertise as these areas of study (epigenetics and nutrigenomics) are so new. My main focus was to have him review overall symptoms related to my genetic SNPs report. He reviewed some recent labs, my current supplement and lifestyle regimen and coupled that with the overall symptom picture. In most cases I would not have invested the time or money. Trust me, it was not an inexpensive consult ($350 for initial consult/$150 for follow up, OUCH!), but it is truly my feeling that the most progress has been made with my complicated case since we have started to scratch the surface with addressing my genetic SNPs and I wanted an expert to weigh in (mind you, I don’t think anyone is an expert in this area of practice yet due to how new these areas are, but some are more so than others because they have chosen to focus their efforts here). I believe that opening up my methylation pathways has made a key difference in everything else that we are doing including treating the Lyme. I just wish we had done something like this sooner. It is the first time in three years that I feel like there is a light at the end of the tunnel and I’m not feeling like things are “sort of working,” I know that they are and it is not just because of one thing that we are doing. I truly believe that what the future holds for complicated cases will be amazing and it already is because personalized medicine is becoming a very real thing. It is my hope that when I go back to school that I will be exposed to learning more about genetic mutations and how to address them effectively, because I hope to help others one day feel like they too can lift the cloud they have always lived under.  All this aside, I have to give true kudos to all my practitioners who started the effort in the first place and who encouraged genetic testing and who have been doing some things that are really right no matter how complicated. This is very leading edge stuff (my technical term, Ha!) in medicine.

The added benefit of talking with this doctor is that he has Chronic Lyme too, so not only was he very understanding of my case, but he was really was able to put the pieces of the puzzle together for me with regard to my specific genetic SNPs. Though, he admits he is not an expert on Lyme. I have a heterozygous HLA mutation, which means it is extremely difficult for me to clear biotoxins from my body. He made several protocol suggestions including a Lipid Exchange protocol that I believe will be helpful and I’m hoping that my Naturopaths are open to some of his ideas. I may not have agreed with everything and my NDs may not either, but I came away from the consult feeling like he had definitely added value and good insight.

On another note I will be starting my clinical fast this month, so wish me luck. I hope that I will have good news for you on the results. If nothing more, I know I will feel good. I always feel good after a fast.

I know there will still be bumps in the road, but I’m so grateful for my wonderful unwavering practitioners who have supported me along the way and continue to support me. I know that I still have a long road ahead, but I look forward to what the future holds and I’m hopeful that my body will one day function as it was meant to with just a little help on my part. We’re getting there!

What Do I have in Common with Plum Island?

About a year ago in my own research about Lyme disease, prior to my diagnosis I tried to uncover any rock that would shed light on Lyme disease. I did this because I was almost certain that I would be diagnosed with Lyme disease. There were several practitioners whom thought Lyme was likely part of my picture. Needless to say, when the diagnosis was actually made, in some strange way it actually brought a sense of relief. It made so much sense with everything that was going on with me, my symptoms and my history.

Part of doing research is finding both sides of the story and trying to cut through all the BS or crap and making sure that your findings or conclusions are based on sound sources. Research doesn't always reveal the most pleasant findings. I remember something I stumbled across about Lyme and it goes a little something like this... There is a beautiful pristine island located off of Long Island, called Plum Island, but what goes on there is not so beautiful and pristine. Human visitors are generally not welcome on Plum Island with the exception of the few biologists that are employed there. The island serves as the Animal Disease Control Center and is currently owned by the Department of Homeland Security. There is a serious conspiracy theory that this island is where Lyme was produced by our own government in addition to West Nile virus and a whole host of other biological germs. … so you see this is what Plum Island and I have in common. 

Plum Island - Lab 257

I discovered there is a book about this conspiracy called LAB 257 authored by Michael Christopher Carroll. He spent several years researching Plum Island and was able to visit the island and its labs on several occasions until he was no longer welcome once it was discovered what his intentions were. He is an attorney with a personal interest. Several months after discovering that this book exists I saw a documentary about the very subject of Plum Island and the connection to Lyme and several other biological germs that aired on the Discovery Channel. I had avoided ordering LAB 257 because I wasn't quite sure I could deal with the anger and frustration that would likely surface from reading such a book given that I have chronic Lyme disease. Yet, recently something told me that I was finally ready. I ordered the book and have only read a few pages, but from what I can tell in the short amount I have read is that it seems to be a carefully written and well researched book with resources to back the findings. So far it is chilling and disturbing. At the very least it could be a bunch of BS, but at least I'll be more informed on the subject from someone else's point of view. It is an interesting conspiracy and may not be that far fetched. I can only imagine what kind of biological catastrophes could be on the horizon.

I'm glad to live in this country despite knowing that our government doesn't always conduct itself in a manner in which it protects its citizens. This is one of those times I have to ask, “What if?” and What can I do?” Plum island is one of those places that I think our government would rather the majority not know about. Check out this article and the video included:  NewsDay.com

Here is the press release that Discovery Channel sent out prior to airing the show: Press.Discovery.com

Candida and the Repurcussions of Antibiotics

I'm not one who is much for resolutions. I feel if you need to change something, then simply change it, but don't wait for the new year to make it happen. That is just a recipe for high stress and failure in my opinion... but I do like to reflect on the past as each new year roles around. It is good to remember where you have come from. As with any year 2013 had its share of good and bad, but I have to say that I really feel like progress has been made with my health and I intuitively feel that 2014 will be a good year for making strides in my health as well. 

I'm feeling better since my last post, but wanted to share the double edged sword that antibiotics bring, which is why I really hold out and typically don't use them except as a last resort. I'm sure this post will ring true for many of you. I am very susceptible to Candida overgrowth and while on antibiotics I began to crave sugar like crazy. One of the tell tail signs of Candida overgrowth. Also, because I was on Amoxicillin, which is in the Penicillin family, my body can only tolerate so much. I am allergic to penicillin and I ended up with hives near the end of my treatment. Oh, goodie!! Anyway, it was the lesser of two evils as the other antibiotic option listed "snapping tendons" as a possible side affect. Uh, sign me up... NOT. So I picked my poison and I knew it was highly likely I would end up with hives. The interesting thing is that because of the methylation pathways that we've worked on clearing, I was actually able to tolerate far more than the last time I had to take Amoxicillin and my body cleared the hives much quicker in 3 days vs. 3 weeks. Anyway, I am now on the herbal detox for Candida and it is working for sure. I've had miserable nausea and severe diarrhea, but I think I'm nearly past that point and I have 3 more weeks left on this treatment. Bye, bye Candida. The treatment is high in Allicin, which is high in sulfer and that means not so good with my CBS mutation. I have to take Molybdenum to help counteract the effects of the sulfer. A little Activated Charcoal seems to help too. Anyway, I know the Candida die-off symptoms are temporary. I've been down this road before.

I saw my Lyme ND at the end of January and treatments for the co-infections are progressing very well at this point. I'm able to increase my dosage of the herbal tinctures I'm on and the goal is to get to 50 drops of each per day. I'm currently at 34drops per day and hope to reach my goal by mid-March given there are no bumps in the road.  Once I'm there we will switch to a stronger formula, but in the meantime I have to keep an eye on what my Dr. thinks may be an additional co-infection, Babesia. I've been getting night sweats and no I'm not perimenopausal. In addition to some brain fog that still hangs around and is typical that is shows up in the afternoon. If this all persists, we'll have to treat the Babesia in the others we are already treating. Eventually we'll move on to adding Artemisinin and others to address the Lyme. We'll also do a heavy metals challenge following my fast that is scheduled for April. 

In the meantime while I'm anxious about starting the fast I've taken almost all carbs out of my diet with the exception of 5 grams timed at 5 hour intervals. My body seems to be liking this and my hope is to kill two birds with one stone. I'm trying to starve the Candida and use my fat stores at the same time without upsetting the glycogen/insulin balance. This should regulate my blood sugar and not provide excess sugar for the Candida to feast on.

Not only am I looking forward this year to making inroads my health, but I'm excited and can feel it in my bones when I think of going back to school. Sounds crazy I know, but the program is Integrative Therapies and I hope to complete the degree with a foundation in Nutrition. I look forward to continuing to help others in the future by putting some real book knowledge under my belt in addition to my own life experiences. My hope is to be enrolled before the end of 2014.

How are you doing? I'd love to hear from you. Let me know what you'd like to know about in future posts. 

Happy early Valentine's day!

Cheers to 2014 and Improved Health in the New Year!

I'm 3 weeks in with a bug I've been fighting. At this point I'm just ready to be done. I even threw in the towel a week ago and tried conventional route with antibiotics, which actually helped me to improve, but not 100%. The worst part is the ear infection, which make me feel like I'm walking around with a fish bowl on my head. That said, this is the first time I've really had a serious acute illness in a year. That is a really good thing and I can tell my body is really trying to fight this thing, it just takes longer for me and the downside is that I may have to try another antibiotic. This is not my favorite thing to do because I run the rick of Candida overgrowth amongst other things. I have a good plan in place for preventative measures.

Ok, enough about the acute illness. I recently got my labs back that look at my environmental exposure and toxic levels. Environmental toxins are known as the "obese makers" and may be a contributor to my weight gain and inability to loose. My tests were pretty good with the exception of Parabens. I'm someone that has taken measures to really reduce my toxic exposures, but the last piece is my makeup and hairspray. It is one of the toughest transitions for most women. I'm ready though. I recently ordered make-up by Tarte and so far so good other than removing the make-up. I'm not sure why it seems to be more difficult to remove this make-up, but my new challenge is to find a good make-up remover. In addition to switching out my make-up I am supplementing with Siliphos and Glycine, which will help protect my liver and kidneys as well as indirectly build my Glutathione levels and coleus forskohlii which will help with thyroid hormone production and fat metabolism including the removal of toxic fat, which is where the body stores parabens and other environmental toxins, hence the "obese makers."  So, I've started my protocol recently and I'm hopeful that it will help with the fasting process that is planned for spring.

I've recently developed Tennis Elbow, which is annoying and makes it difficult for me to do my weight lifting regimen. I have resorted to Ultrasound with my chiropractor and hope that it will be as effective as it was with my plantar fasciitis in the past. 

I will also meet with my Lyme ND later this month for next steps, but so far so good on this protocol. I recently started Curaphen, which has given me a better quality of life. My overall chronic pain issues are significantly better as a result.

I am so hopeful about improvement with my health in 2014 and as a result I'm hopeful I'll be abe to do some things that I've been wanting to do for quite some time. I'm even toying with the notion of going back to school part-time for Integrative Therapies. My fingers are crossed that this may become a reality as crazy as it sounds to go back to school once again.

I hope this post finds you well and I hope 2014 will bring out the best you yet!