Starting Treatment Protocol for Lyme Disease

I've been a little nervy all day today. Things are going to change, starting tomorrow, and I'm praying that it will turn out to be for the better :-)

I never really explained throughout the last two months what has been happening with me, and I realize that to the average reader who is not already one of my friends or family members, it may have suddenly gotten a little difficult to follow my path.

In a nutshell:

1) After seeing two GI specialists, I learned that I do not have eosinophilic esophagitis or esophageal cancer. The peristalsis in my esophagus is very slow and smooth muscle is hypotensive, also the LES is hyptotensive. Oh, and a 2cm hiatal hernia. This is apparently seen in a variety of collagen vascular disorders, diabetes, hypothyroidism and untreated GERD. My GI in Sacramento said that he believes this is severe GERD and of course wants me on a PPI. I didn't respond well to the drug, and am now trying to go the way of probiotics, dietary change and sleeping elevated.

2) The rheumatologist said there are no current signs of Scleroderma. Bloodwork remains negative, although ANA was positive at 1:40 with a speckled pattern. Rheumatologist said this could be from my Hashimoto's thyroiditis, or possibly even just "normal". Apparently 1/3 of population has this particular finding. He will check me again in November.

3) I tested positive for Lyme disease via an IgM Western Blot serum test. Diagnosis was given in late July by one LLMD and confirmed yesterday by another LLMD/ND. Also confirmed via biofeedback, but I still don't know where I stand on those machines. I have also tested positive, twice, for Mycoplasma Pneumonaie IgM and IgG. Today I had my blood drawn for the last of the co-infection tests... babesia (two kinds), bartonella (two kinds). Also h.pylori. Very, very interested to get results back from this testing.

4) I have begun working with a very talented and highly regarded LLMD/ND who is going to help me walk this path of healing slowly and deliberately. We are going to address all of my known imbalances - female hormones, adrenals, thyroid, heavy metals, candida, bacteria. Starting up slowly with only adrenal support and one anti-microbial. Going to take it from there. It should be a long path but I am ready to do anything to be with my children well into their adulthood. I have been told that healing from chronic lyme and co-infections can take anywhere between 9 months and 3 years on average, possibly longer. I am ready.

5) I am following the lyme diet which means that once again I am going gluten free, and mostly dairy and sugar free. Hoping I will be able to re-add rice into the rotation without hurting my gut too much. I miss the comfort of the wheat bread but not the exhaustion, brain fog and acid reflux I was getting after every slice.

6) Thanks to the incredible generosity of a local clinic owner I am going to get infrared sauna treatments 2 - 3x per week for a price that my family can afford... also, they offer massage covered through Aetna (yay!!!) and I will continue acupuncture and using EFT for inner balance. Also acupuncture on Sundays, with the best acupuncturist in the entire world.

7) Not to mention, church on Sundays and spiritual reading/meditation every day!

8) And exercise as I can tolerate it :-) Lots and lots of sunshine.

9) Last but certainly not least, I am so hugely indebted to the support network I have found on the Road Back Foundation bulletin board. I can't believe how far I have come emotionally in the last two months and how much progress I have made in terms of getting a diagnosis and getting on treatment. I would never have come this far so fast without the RBF and I have received so much valuable advice and support from the other members of the group. I laugh and cry when reading their posts, and after hearing so many staggering stories of healing and remission, I truly believe in miracles.

10) Tomorrow is the big day.

I have been told by many, many, many people including doctors and clinic owners that I should expect to get worse before I get better... expect to feel like I have a terrible flu or strong flares of my symptoms as the actual bacteria or protozoa begin to react to getting chased by antimicrobials/antimalarials. Even though I am going low and slow with herbs and homeopathics to start, I am still expecting this.

But I am not very scared of the Herxheimer response ("herxing", they call it). I am more afraid that I will somehow be the one lyme patient for whom none of the many treatment options or modalities will work... and that I will just get sicker instead of getting well.

That isn't the best of me talking, though. Just the small, scared part. The best part of me knows that I have a ton more to do and accomplish in this world... most of all, to love and care for my children and husband who I adore. I have found the path of Road Back, AP, Lyme treatment, etc. because I am willing to do whatever it takes to get well and somewhere deep down, I really believe that I will. I am very excited to step into the miraculous!

So, that said... I'll let you know how it goes!

Long Time, No See

I haven't posted for quite a while. However, this is not all bad. August was by and large a wonderful month for our family which included a much needed vacation to a local island (our first family trip in over two years) and also our annual 4-birthday bash. I felt blessed to spend time with my family, including my siblings who came from distant cities. It was a happy time, and in the midst of it, I saw the rheumatologist in Riverside who is so highly regarded by many. He did a thorough workup and said that for now, he saw no sign of scleroderma. Not only did he tell me this, but he also wrote it on his chart notes (which I got a copy of). That one phrase at the bottom: "No sign of Scl" is something I have re-read in bed at night, when I have had too much anxiety and could not sleep. Because really, I have to admit that I keep waiting for the other shoe to drop. I will be seeing him again in November for a followup checkup.

A lot of the supplements I was taking were making me feel terrific - clear brain, no fog, optimistic, patient. I made the mistake of trying to go cold turkey off of my proton pump inhibitor (Prevacid 30mg) though and boy has that been a HUGE mistake. The rebound hyperacidity has been outrageously intense, so much worse than any reflux I ever had in my entire life before going on the drug. That alone tells me that these pharmaceuticals are not healthy. I don't like the feeling that I have to go back on the drug to suppress the acid that is being caused by the drug. That feels like a pharmaceutical industry ploy to get people addicted to these things for life. So I am going to tough it out and pray that the acid will not damage my esophagus too much in the next few weeks. I am taking natural acid products instead, and have found a very good probiotic called GoodBelly BigShot 50 which has significantly helped.

I am excited about my upcoming appointment with a local LLMD/ND on Monday. I have read her book about the Lyme Diet and she shares my philosophy that food is medicine and that one can heal bacterial infection/hormone imbalance/candida overgrowth with the use of diet, herbals, antifungals and homeopathics - rather than relying solely upon antibiotics. I am open to both but really believe that rebuilding my gut ecosystem is going to be the key to all healing. The lyme connection may tie all of my autoimmune problems together, give them a root cause, and get me on my way to total health. I really believe the day will come when I feel 'normal' - energetic, optimistic, active and healthy just like I did years ago before having children.

I'll let you know how it goes :-)