Peace Be With You

2013 is going to be filled with lots of challenges, but despite all the challenges I am truly at peace with whatever may be. I'm not sure when peace really sank in for me, but it is like a switch has been flipped for me and it is my hope that all my readers will at some point experience this kind of peace in their journey. I have had the flu and I'm still recovering. It has been almost 2 weeks. The flu is no joke this season, but my immune system reacted the way it was supposed to, so even though I've been sick this is a very positive thing. I've also started my new protocol for Chronic Lyme. My protocol is aimed at modulating my immune system in addition to raising my CD57 and lowering my C4a markers. 

My CD57 was 57 (60-360 range) and C4a was 1776.6 (0-650 range), definitely a chronic infection. In Chronic Lyme patients they typically test with low CD57 and high C4a. I'm not sure that the numbers are any real indication of how severe the infection is. Our treatment is aimed at getting those numbers in more optimal ranges and modulating my immune system. For now I'm NOT doing any ABx. We are dosing with Cat's Claw tincture that will be titrated up over time. This herb is known to raise CD57 levels. I'm also taking Eleuthero in high doses. This is specifically known to be beneficial in Chronic Lyme and I'm on a regimen through Apex Energetics that will balance my Th1,Th2, Th17... This regimen includes Glutathione Recylcer, Nitric Balance, Turmero and Resvero from actual Japanese Knotweed in concentrated dose. I actually had a ton of reactions to this regimen initially and so we had to back off on dosage for now. I seem to be doing well on the lower dose. We have added all this to my current protocol in addition to 25,000 iu Beta carotene and a mix of Spirulina/Chlorella. I'm also taking concentrated baths in Epsom Salts 3 xs/wk and sitting in an infrared sauna each week. There are other therapies we may add in if determined necessary and next steps will include heavy metal testing and IgG/IgE for food sensitivities/intolerances. I know treatment will be a lengthy process, but I'm hopeful about progress. It will take a minimum of six months to see any elevation in my CD57 marker. Once these numbers are more optimal, I should be feeling better and have a much stronger immune system. 

I'll be finishing my quarterly gut healing about the middle of February. I haven't missed grains, dairy or nightshades too much. Once these items are back in my diet, we'll be able to test for food allergies. That said, I'll have to do a quarterly gut healing, which means about half the year I will not be eating grain, dairy or nightshades. I'm sure once we do the testing there will be other foods to add to the list.

I will be anxious to learn about any heavy metals that may be roadblocks to regaining my health. 

I honestly feel like we've reach the last layer of the onion in my health.  I feel fairly certain that Lyme was probably first on scene and the element we are dealing with. I think Lyme acts as a huge portal between the immune system and the environment... creating a weak barrier between self and bacteria, viruses, parasites, etc. I am truly looking forward to becoming stronger each day.

That is my latest update. Stay tuned for future status updates...

Peace out!

Auld Lang Syne = Days Gone By

Here is to what may be in the new year! I'm looking forward to good things to come. 2012 offered a mixed bag, but mostly as I look back on days gone by, I think of memories with new and old friends, family. Growth from a mental, emotional and spiritual stand point. It was a good year and I believe that 2013 will have even more to offer.

I have a strange positive outlook despite the uncharted territory I will be entering with my health. I received my CD57 and C4a lab work results and my CD57 is low and C4a is high, which is positive for chronic infection. That said it is most likely Lyme and highly suspect with the other labs and survey I had completed previously. Chronic Lyme is extremely complicated to treat and there is so much controversy surrounding treatment. I'm nervous to say the least and I'm aware that this is complicated for the patient and the practitioner. That said, I'm confident that my current doctor will do everything she can to help me strengthen my immune system, which is a huge part of treatment and that may be just enough. The best thing I can do for myself is to remain level headed and positive despite what may come my way over the next year. Lyme will be with me for life and it has probably been here longer than all the autoimmune diseases.  It is probably the spark that lit the autoimmune fire for me. The key is to get my body to a point where I can live in harmony with the Lyme. This may take up to a year or more... so I'm in for the long haul.... Someone please remind me that I said this if I face some frustrating moments in the upcoming journey.;-)

Oddly the bigger concern for me has been the weight gain. I've gained 30 lbs in the last 2 years. 20 lbs in 2012 and 10 lbs in 2011... This despite all the whole foods almost no grain, absolutely no gluten, very little dairy and many other things that I avoid. I eat healthy portion sizes and I also work out 5 days a week. I mix up my workout often and I push myself. I'm not afraid of a tough workout. My adrenals are healing and hopefully my cortisol levels will begin to come down, which will help. I'll begin my quarterly gut healing tomorrow, which means absolutely no dairy, grains, nightshades... for 6 weeks in addition to a new protocol. I'm hoping this will help too. I've added Pilate's and I do 9 flights of stairs each day of the work week. I'm hoping to participate in the Orange Theory 6 week weight loss challenge in the upcoming weeks. I'm going to at least check it out first. I have the additional challenge that certain movements during a workout can easily flare up my costochondritis and pelvic floor issues. I have chronic hyper tonic muscles and my ribs are hyper mobile. This is very much related to the Lyme. That said, the Pilate's has been helping and it is very rehabilitative. It has been helping with my recovery from other workouts, so I'm in a catch 22... I need to take the weight off so I'm not having so many flare ups, but in the process I may experience more flare-ups in order to get there. I've been asking for help with my weight gain for months now and I am scared at the thought of my weight inching up any more than it already has. It is time and not because of vanity or a new year resolution, but because I know if I don't make every effort, my weight gain will begin to negatively affect my health and all the other progress I've made in other areas of my health won't matter any more. I feel like I'm wearing a fat suit and none of my clothing fits properly, but the weight must and will come off. My doctors are perplexed, but will be putting their heads together to try to figure this thing out and I will make every effort to make it happen.

I have a lot to look forward to this year and a lot of hope that this will be my best year yet. This will be a year filled with joy and happiness. This will be the year that taking care of my health will be second nature and much less of a battle. It will be more harmonious and I will feel full of life instead of depleted. I will have more time for activity and things that bring me enjoyment.

Cheers to all of this and Happy New Year to my peeps! I wish you a renewed sense of life in this coming year and much support in all your endeavors.

Much Thanks

I had a really enjoyable Thanksgiving holiday and I have alot to be thankful for. I have great friends and family that I was able to celebrate the holiday with. Things have been busy at work for both my hubby and I, but that is a good thing and we have embarked on one of the busiest months of the year. I made the conscious decision to cut back as much as possible on appointments with practitioners this month, but I won't be able to eliminate appointments entirely. I've had many positive improvements in my health recently, but there is still a long road ahead. 

I continue to be thankful for Cordyceps, which in my case has an effect of dampening Th17. I had a recent visit with my Naturopath and the update on the investigation into Lyme is that between my lab results and my survey, there is enough information to warrant treatment, but there is no definitive diagnosis. I'm really okay not arriving at a definitive diagnosis, since treatment will be aimed at boosting and modulating my immune system and ultimately aimed at helping me to feel better. That said, we are also waiting on lab results for 2 different markers, CD57 and C4a. CD57 is typically found to be low in individuals with chronic Lyme and C4a is sometimes high in individuals with chronic Lyme. The focus of treatment depending on what the results are will be to get these numbers into a better range. The numbers don't typically move gradually with treatment, but suddenly move once treatment has truly been effective over a period of time. At this point we are hoping the labs provide additional information that will be helpful, still there will be no diagnoses, just more or less suspicion about Lyme. 

My new treatment will consist of balancing my T helper cells with high concentrated doses of Turmeric and Resveratrol. These will help to balance Th1 and Th2 and dampen the negative affects of Th17. My new protocol also includes a combination supplement that will balance the way my body utilized Nitric Oxide Synthases (eNOS, nNOS, iNOS). I will also be taking a  supplement that will help my body to recycle the Glutathione that already exists in my body, since supplementing with straight Glutathione is usually very ineffective because the body has a tough time metabolizing oral Glutathione. Most of my protocol is based on much of Dr. Datis Kharrazian. Here is a helpful link that does a much better job of explaining: Nitric Oxide Modulation

In addition I will be making weekly visits to the infrared sauna, which will help to enhance the treatment. Here is a great article about the positive effects of infrared saunas for chronic Lyme patients: Infrared Sauna

In January, I will also add another gut healing protocol. during my appointment with my Naturopath, she told me she had recently attended a seminar by Dr. Kharrazian and he talked about autoimmune individuals. Over time, many autoimmune individuals develop and autoimmunity to their own gut lining (not Chron's or Ulcerative Colitis). His suggestion was that individuals with autoimmune conditions should do a quarterly gut healing, because autoimmune individuals end up with leaky gut from time to time if they don't do a regular maintenance of gut healing... so begins my regular gut healing in January. I will not be able to eat dairy, grains or nightshades during the 6 week gut healing. This should be a cake walk for me since I have done all of this in the past for a much longer period of time. 

I'm excited to start my protocol and I'm hopeful there will be more improvements. I will keep you posted on the progress.

I wish all of you a happy, blissful holiday season!

Magic Mushrooms

“Fall seven times, Stand up eight.” – Japanese Proverb

Well, I could not have said it any better. When something seems to work on this crazy journey, I take notice... cannot help but take notice. Three cheers for Cordyceps! I have fallen many time on this journey, but the reason I keep standing is because of things like Naturopathic Medicine, Acupuncture, Slow Flow, Cordyceps, Ultrasound, Chiropractic and Dry Needling/Physical Therapy that seem to really work for me and my many issues. They provide me a clear understanding that yes, I have chronic health issues, but if I keep "standing" up after falling so many times, I might just keep on standing because I found a solution or at least something that helps provide a better quality of life. Cordyceps is my magic mushroom and I'm sad we didn't try it sooner, but so glad to be able to benefit from it now. Here are some of the positive things I've noticed since adding Cordyceps to my regimen:

.       Energy and stamina are better, but energy seems to still wane in the afternoon & evening (lots of yawning)

.       Sleeping much better

.       Waking feeling more rested

.       Less/lighter headaches

.       Psoriasis seems much calmer

.       Reduced pain in muscles & joints 

.       Plantar fasciitis seems to be improving

.       Better outlook, much more hopeful, more even keeled

.       Less affected by stress

Cordyceps

Yay Cordyceps! That said, I'm currently in the midst of a Costochondritis flare, which is painful, but not nearly as bad as the last one I had. I've had success with Dry Needling and Physical Therapy and my PT encouraged me to begin pilates. I enjoyed my first class on Saturday, but unfortunately I was  at the tail end of a flare up during class and the pressure from the shoulder pads on the reformer was just enough to cause issues with my ribs and clavicle after the class. I could feel everything pop once I stood up from the reformer and that was when I knew I was in trouble and I'd be feeling pain later. That said, I'm excited about the pilates and being able to strengthen some of those muscles so that I can reduce or mitigate future flare ups.

Update on my labs - My ASI labs came back and my Cortisol is high in the morning and during late night, so that explains the crazy weight gain and inability to loose as well as crashing after workouts and being exhasted in the afternoon and evening and waking at odd hours. My Naturopath has started me on SeriPhos which is supposed to be taken when Cortisol is at its highest and its purpose is to plug up the cortisol receptors and help the pituitary to return to more optimal function. It may be a while before I can tell its affects.

As for the Lyme labs they were inconclusive. I had a couple bands show positive, but still not enough to tell exactly what is going on, so that means there is a need for further testing. I'm kind of in this holding pattern right now because my doctor want s to be sure she is fully educated on the matters surrounding Lyme testing before we move forward. There is so much controversy and confusion all the way around for patient and doctor when venturing into the Lyme world. I'm glad she is dotting her "i's" and crossing her "t's" before we move forward. It is a scary place to venture and I'm aprehensive, but I know I'm in good hands. Stay tuned for further information.

Hoping all my friends and family on the east coast have weathered the storm. You are in my thoughts.

On a lighter note, my hubby and I are taking a hookie day on Friday to see the new Bond flick. Cannot wait. I'm also looking forward to friends and family this month for Thanksgiving. It is my second favorite holiday. Some of my best memories are from Thanksgivings past.

Scream Until Your Lungs Hurt!

I decided my last blog post was pretty disjointed and that isn’t fair to my readers. I prefer the material to be interesting and informative at the same time while showing a glimpse into my journey with Autoimmune issues, so I just want to apologize because although most of my posts are stream of consciousness I try to make them read fairly cohesively.

Anyway, this is a time in my journey that I feel there will be a crossroads in the next year of my life with respect to my health. I feel it in my bones. I believe they refer to this feeling as intuition. Call it what you will.  I’m 40 now. I celebrated my birthday on September 28^th with friends and family and though I received some very lovely gifts, the best gift of all was being surrounded by wonderful friends and family whom mean so much to me. It is their love and support that gets me through some of my most difficult days. I try my best not to burden them with my health issues, partially because most people that don’t have autoimmune disorders don’t have the capacity to truly understand what is going on, (Mind you I’m not implying stupidity, but let’s face it, our own doctors don’t understand it for the most part.) and partially because being with them is my time to enjoy the peace I have while in their presence, because they are my net when I fall. The few times I’ve really talked about the symptoms and what is going on with my body, the few times I’ve needed to reach out they have been there for me and haven’t made me feel like less of a person or like I’ve put them out by telling them a little about my experiences. For that reason, I really try to limit the information I share because I respect them and would never want it to become a burden to someone else that I care about and love. A good support system is so necessary as I was reminded this week by my psychotherapist… I was reminded because I’m still on this crazy roller coaster that I cannot ever stop… perhaps we can slow it down a little bit or maybe even a lot and that is what I’m hoping for in this decade and maybe even over the next year. I hear that 40s are great.

My roller coaster seems to have been on a fast track downhill with symptoms galore for the past few months and my practitioners and I are putting our heads together to find the right brakes to apply to this crazy ride. This comes as a surprise because inflammation is supposed to reduce as the gut heals and my gut healing protocol comes to an end today. My energy has really been suffering and so I’m kind of along for the ride right now as much as I need to be actively involved, I also don’t need the additional stress of worrying about it. I have a good team that I trust to figure this thing out. It is the time it takes for most measures that is sometimes so painfully frustrating… Patience please be with me in this moment. All this inflammation just needs the right water so to speak to put the fire out.

The Th1 and Th2 challenge was a flop for me. My body reacted negatively to both challenges. It was a huge bummer for me. I had a lot of hope that one would help me to start feeling better, so instead my Naturopath is trying to modulate the Th17 cells in my immune system with Cordyceps. Information in Th17

I’ve only been taking Cordyceps for a couple days now, but I have to say that I think it may be helping, but part of me feels it may be too soon to tell. Cordyceps is a Chinese mushroom that has been used for many years to help modulate the immune systems in Cancer patients and there has also been recent success among the Naturopathic community in treating their patients with Autoimmune disorders.  Information on Cordyceps

Cordyceps has also been shown to help with Adrenal fatigue. We believe that I have been experiencing Adrenal fatigue for a while now and that may be why I’m struggling with so many symptoms and so much inflammation. I just sent my Adrenal Stress Index (ASI) Panel to the lab this week and should have some answers back in a couple of weeks as to the status.

I will also complete my Lyme Disease testing in the next week or so. I suppose this is the one I’m the most nervous about because I’m not only aware of how difficult it can be to treat chronic Lyme, but I am also very aware of the political controversy surrounding the treatment of chronic Lyme. I’ll go into further detail about this if I am in fact diagnosed. I also know how much worse things could be if chronic Lyme goes untreated. Testing can also result in a false negative, but the lab we are using for testing is the best one out there for now. My labs will be run through Igenex. Stay tuned.

I’m reminded with each appointment how fortunate I am to have the wonderful team of practitioners that I have. It is not only on the ride up that I appreciate their hard work and diligence, but it is on the out of control downhill roller coaster ride that I appreciate them the most because I know they won’t allow me to become derailed and I know they will eventually find the brakes to slow this crazy ride down.

So, put your arms up in the air, let your hair fly and scream until your lungs hurt! Try it. I dare you… It might be just what will get you through today.

Let me know how you are doing with all that screaming. I'd love to hear from you.

BUBL Conference Call - Sep 25th 7pm MT

Join us to learn about the statistics related to autoimmune diseases and to hear from the founder of BUBL regarding her own experiences with autoimmune diseases and how she has handled her ongoing journey. We’ll also discuss future topics for upcoming BUBL meetings. 

Monthly meetings are held onsite with practitioners across the Denver area, but once a quarter conference calls will be held in place of an onsite meeting in order to reach out to the autoimmune population within and outside the Denver area.

Date:              Tuesday, September 25^th, 2012

Time:               7:00 p.m. – 8:00 p.m. Mountain Time

Place:             FREE Conference Call

Participant Access Code: 907183#
Conference Dial-in Number: (605) 475-4000

Participant: When prompted, enter the assigned access code, followed by the ‘#‘ key.  Once connected to the free conference call, every caller will be able to talk.

Mute - *6 key
Press *6 to mute your line. Press *6 again to un-mute the line.

R.S.V.P.:          BUBL.Denver@gmail.com

About BUBL…

BUBL - "Better Understanding By Listening" - An organization, which seeks to support others whom are attempting to live a healthier lifestyle due to autoimmune disorders. Join the BUBL and gain a Better Understanding By Listening to each other, to your "gut", to your intuition and to practitioners, doctors and health experts that have your best interests at heart. This is a community of like-minded individuals from all walks of life whom share a common interest in a positive healthy lifestyle. BUBL’s  mission is to provide patient advocacy and to increase awareness of autoimmune disorders and their root cause in an effort to improve quality of life and quality of care.

Thanks for your support!

Autoimmune Girl

Founder of BUBL

Bubl.Denver@gmail.com

https://www.facebook.com/bubl.denver

 

Author of The Autoimmune Battle

http://autoimmunebattle.blogspot.com/

Need Balance?

The Scales - Libra

Happy Labor Day! I want to dedicate this blog to my grandfather whom would have been 100 on September 1st. He passed in 2007 and I think of him often as he was always such an inspiration in so many ways. He was an amazing man and I wish he was here today. We drove up to Mt. Evans this weekend, which my grandfather would have loved. He loved the outdoors and despite his Rheumatoid Arthritis, he was fairly active right up until the time he passed.

I saw my Naturopathic doctor about 2 weeks ago and I got my lab results, so there is some good news. All my labs look pretty good. My thyroid numbers are in fairly good standing, though my TSH is on the high end of normal. My triglycerides are in good range. My cholesterol numbers look good. On the down side, my vitamin D levels and Ferratin levels dropped, but those are both easily treatable by increasing my vitamin D and iron intake in order to have more optimal levels. My glucose levels are on the high side of normal.

My doctor looked at and palpated my thyroid and agreed that it is definitely enlarged on the left from the last time I had seen her. The increased hoarseness that I've been experience in addition to the enlargement meant that we weren't out of the woods with the thyroid despite the numbers looking pretty good. We're currently treating with caster oil packs and hydrotherapy to the neck/thyroid, if this doesn't result in improvement, we will have to ultrasound the thyroid to make sure there isn't something more serious going on.

So, despite the numbers looking pretty good with exception of the Vitamin D and Iron levels, I haven't been feeling great. July and August were unusually busy months for me and I had the sense that if my thyroid wasn't out of whack, my adrenals would be out of whack and that is in fact the case. You see, the adrenals and the thyroid are like yin and yang. Most alternative medicine recognizes that if you don't address the adrenals first and foremost, then the thyroid with never really benefit from treatment. Conventional medical practices typically don't recognize a problem with the adrenals until it is far too late and one ends up with Addison's disease, which is an autoimmune disease of the adrenals.

Many of the borderline numbers on my labs (specifically the glucose and TSH in addition to other specifics), though in normal range in addition to my symptoms indicates there is adrenal insufficiency. What does that all mean for me?  Well, lets back up a bit with symptoms. I've been very exhausted for a couple months now. I crash hard in the evenings and my body just shuts down. I wake with insomnia about 3-4 am almost every morning and I wake feeling unrefreshed.  The body can only do that for so long. This is probably one factor that may be a cause of the higher glucose numbers. I'm still struggling to loose weight and it tends to inch up a bit every so often despite the fact that I work out every day and I eat a very healthy diet. I typically am very careful about what I schedule into my week for the very reason that I don't want to over do it, but there were some things out of my control the past couple of months. I had a couple of times last month that I cried out of pure exhaustion, another sign that the adrenals are affected. Dr. Rind has a very interesting metabolic scorecard, which compares adrenals to thyroid and when I went through the list I discovered that 90% of my symptoms fall in the adrenal category, though adrenal symptoms and thyroid symptoms can be very similar, making it difficult to differentiate. I don't know Dr. Rind, nor am I familiar with his work, so I typically wouldn't post about someone that I cannot recommend, but I feel there is some level of validity with this scorecard at least as an indicator that something may be going on that you might want to ask your doctor about. Use this link at your own risk: Dr Rind's Metabolic Scorecard

In addition to the above symptoms, since starting my gut healing process I had high hopes of feeling better and seeing improved symptoms.  I hate to disappoint, but I have hopes that I'll be able to tell you I'm feeling a lot better in future posts. My Psoriasis has been worse than I've seen it in quite a while. My Naturopath said this can happen in the healing process. The skin is an area where toxins are eliminated. My cycles have been more difficult. My sinuses have been flared up. I've had an incredible amount of pain that my physical therapist has been challenged to keep up with, but I'm so thankful for her. I have had chronic hypertonic muscles for years and they are causing issues that could possibly be pegged as costochondritis or tietze symdrome or both, there are slight differences between both, though we're not really naming the issues for now. Theses issues create an intense amount of pain that can be debilitating at times. I won't go into too much detail here except to say that being in constant pain can be exhausting and will also be draining on the adrenals. The chronic hypertonic muscles in addition to other symptoms continue to make me believe that Lyme disease could be a reality and that will be one of the next things that my Naturopathic doctor will test for. There is an interesting documentary about Lyme disease that is a big eye opener. You can watch it for free on hulu:Under Our Skin. Scott has an interesting website and blog about his journey with Lyme disease and he can also be seen in the documentary listed above. Here is his website if you want to check it out: Better Health Guy

Lyme is something that can be chronic and if I have it I will be in the chronic stage by now. If it is diagnosed treatment protocol will change somewhat from the current plan. Lyme can be with you for many years and I grew up in a state, which has the current highest reported Lyme cases in the U.S., Pennsylvania.

So, the theme or focus for the month of September is BALANCE. This is my birth month and I will turn 40 near the end of the month and I had hopes of having a big celebration and inviting friends from out of town. As nice as that would be I had to make the decision to have a low key birthday and I nixed the original idea opting for a low key get away to the nearby mountains with my hubby. My adrenals will thank me for not overdoing it and not adding stress. In addition I'm being much more intentional about incorporating more yoga, which is much better for the adrenals than some of the more strenuous/intense workouts. It may seem counter productive to weight loss, but weight loss won't matter if adrenal fatigue sets in. I will be making many intentional efforts this month to reduce the amount of stress in my life as a result intending to bring more balance into my life. I'm a Libra after all and balance is so important.

I am at 2 months of the gut healing protocol and I have another month to go according to my Naturopath. She switched up my supplementation and we've also added herbs that will support my adrenals. It isn't surprising that my adrenals are struggling given all the bugs my body recently had to work so hard at getting rid of. Any type of stress can be difficult on the adrenals. We'll also be completing a challenge of the Th1 and Th2 pathways with substances that support one side or the other. If you've read Dr. Kharazian's book than you'll understand what I'm talking about, but the idea is that in an autoimmune individual one pathway of your T helper cells is weak and the other is a bit overbearing. The challenge will consist of 3 days of one substance and 3 days of the other and depending on my reactions noted, should indicate which side of my T-helper cells need to be supported or strengthened, so my fingers are crossed that we'll be successful in discovering an area that we can support. Stay tuned for results.

This month for the BUBL meeting I'll be hosting a conference call, so if you are interested in dialing in, please RSVP to BUBL.Denver@gmail.com an 800 number and conference log in code will be provided. I'll provide an additional post with details in a couple of days, so stay tuned. I'd love for you to join us on this call and I'll try to do a conference call once a quarter so that those of you not located in Denver are able to attend if you would like.  Stay tuned for more details and the date/time for the conference call this month.

I'm tired and it is time for bed, so good night for now. I hope you are all well and I just want to encourage each of you to make space for yourselves and remember to find ways to relax as difficult as that may be at times, it is always so important.