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Where The Heck Have I Been? (A Health Update)

3/11/2015

7 Comments

 
It's been a long time since I've wrote an update specifically about how things are going with my health, sooooo I guess it's time. I'll jump right in...

Back in December I started having quite a bit of pain and problems with my pancreas and liver. My pancreas was visibly swollen, tender to the touch, and absolutely everything hurt to eat. It was a dull constant ache that no amount of heat, essential oils, or anti-inflammatory could touch. I went on a clear liquid diet for about 3-4 days around Christmas, and got an IV. This was incredibly helpful to let my digestive system rest a little bit and give my organs a break.

Alas, while it did give me a break it was short lived. Once I started to eat again and build back up on some supplements the herxes came on with a vengeance, primarily neurological at first. The night-time seizures and spasms would go on all night when I tried to rest, and I spent 3 days straight awake. I was the definition of a zombie. This went on for weeks, and my only source of sleep was short naps I would take during the day if my body allowed. The less sleep I got the more stress it put on my body as a whole and my pancreas and liver took a beating again. I fought pancreatitis and liver enzymes skyrocketing as it began to fail. Times were tough. All of this craziness took up all of January and February, hence my silence on the blog. I was in too much pain and had too much neurological strain to be able to look at computer screens or phones and process much. My brain was utter mush, that's the best way to describe how it felt.

The biggest trouble with all of this has been my weight, which has dropped greatly. Honestly I haven't got on a scale because I don't want to stress myself out, but my parents are keeping an eye on it for me. I know that right now I have no control over that, my stomach sometimes will not physically allow me to get food down so being upset about it won't help. A few years back when I had a seriously low body weight I found a supplement called Benecalorie, which helped a ton. However since then I became allergic to one of the main ingredients so I haven't been able to utilize it. We are currently on the hunt for some kind of meal replacement shake that is packed with calories but doesn't contain the usual suspects (corn syrup, sugar, soy, dairy). Pretty much all of the stuff on the market that packs the calories also packs other harmful substances.

This leads me to the latest update. I highly recommend that any patient with a chronic illness gets an Organic Acids test run by their Doctor. It is incredibly informative and can tell you a lot about what is happening in your body. I received my results recently and in a nutshell it confirmed that I am incredibly malnourished. I'm severely depleted in a lot of vitamins/amino acids/minerals, most noteably the B vitamins, CoQ10, Carnatine, NAC, and many more. Although I do take vitamins, since my stomach is in such bad shape a huge amount of those vitamins don't get absorbed to be used by the body. This is a problem a lot of people face when they have been sick for so long. The best way to get your vitamins and minerals which actually gets into the bloodstream is from actual food (the most bio available), but I have not been eating much the last 3-4 months so that hasn't helped my case. I can look in the mirror and know that my body is weak and desperately needs food, but it really hit home to see just how depleted things actually are. Right now my prayers are to find a way to build my body up that doesn't involve a feeding tube. I am fiercely fighting that notion.

A few other things I learned is that I am fighting two infections in my stomach. One is a fungal infection & the other is a bacterial infection. Together the two of them have set up shop in my small and large intestine, which I suspect is making eating that much more painful and adding to the general unwellness. I have dealt with stomach issues for a long time, but lately I have had some of the most brutal stomach aches I can remember. Between the infections in my stomach & the pain from my inflamed organs it has been hard to distinguish where one ends and the other begins. But I feel incredibly thankful to have the knowledge of what is causing at least some of the issues.

I can't begin to treat the infections in my gut yet because I'm just not strong enough. I don't have the proper nutrition or strength, and it's likely I won't get very far if I tried. So first things first I have to put on some weight and get some nutrients in me. That is task #1. Along with that task is accomplishing it without eating too many fats that would further aggravate my pancreas. Quite a delicate balance!

Shew.. I think that is the general gist of things. This is probably one of the more debby downer of posts, which is why I always hate writing them. I know that so many wonderful people follow along on this blog and they want to know what has been happening with me. So I want to write updates, but I also feel like I'm playing the worlds smallest violin as I type each word. I sincerely hope that none of that reads as pity, but is simply informative. I have been pretty much MIA and disconnected from life lately and well, this is why.

Thank you to everyone who entourages me, prays for me, and lifts me up in every way. It means a lot more than I can put into words. I know that God is in the drivers seat and he will deliver me from these trials the same way he delivered in the past.

xoxo,
Christina
7 Comments
Tiffany
3/12/2015 07:07:23 am

Lifting you up in prayer to our gracious Lord that heals!!

Reply
Christina
3/18/2015 03:18:23 pm

Thank you so much Tiffany, your prayers truly mean so much

Reply
Hannah
3/21/2015 07:45:00 am

Hey Tiffany,
I just found your blog. My sister did too. There are six in my family of origin and four of us have Lyme and now my nephew as well. My Mom has led the Fauquier Lyme support group for almost ten years. Not boasting just trying to share background. Every little thing we've tried has been an experience! Some things work, some don't. I've only accepted the reality of Lyme disease in the last year or so. Had a thought about your gut pain. My sister could not ingest anything for a few years without awful pain. She found a compound pharmacy that can take just about any med and make it in a lotion form so you can take it topically. Its not as effective as oral meds but it may help decrease pain enough for you to get some nourishment. My sister is still dealing with malnourishment issues and may for many years. I pray the God of all comfort, wraps His arms around you in a special hug!

Reply
Christina
3/24/2015 09:48:26 pm

Hi Hannah thank you so much for sharing that! I didn't even know that was possible but what a great idea, getting some crucial vitamins in a lotion form will guarantee that I get it in my system. Thank you so much for that suggestion & your encouragement!
Do you happen to know which compounding pharmacy she uses?

Reply
Riley Harris link
4/16/2015 11:24:35 am

Let me start by saying that you are not playing the worlds smallest violin. As far as I can tell it seems to me that you are blowing a trumpet atop the mightiest mountain to echo throughout the land for all to hear and take notice. It has been an idle ride for all of us that are victims of Lyme but with every word you write you inspire and give hope which has helped are cause move forward even if it is ever so slowly. You are courageous and your posts bring me to tears. Not because they are sad but because even though we don't know each other when I'm at my worst your words remind me that I'm not alone. I say you are courageous because it takes everything, mind, body and soul to put yourself out there for all to see. It is people like you that has prompted me to start my own blog to tell my story also. I however am not as brave as you and do not use my real name. I just feel like I can't express myself in a true manner if those around me knew it was me. Today was my first post to my site and it took me several hours just to click the button to go live. But once I put it out for all to see I had the greatest sense of relief. You gave me the courage to take the first step to open new doors and not be afraid to share and learn with others. You are a warrior on the front line of a losing battle but the war is far from over and I am now right there by your side. So when your having a bad day and feeling broken and alone just remember that this girl right here, is thinking about you.

Reply
Christina
4/29/2015 08:00:36 pm

Riley,
Wow your words mean more than I can express. Thank you, truly thank you. It was the nicest most humbling comment to read, and it made my week. I'm so happy to hear that you took the first step in blogging! If you would like to share your blog I would love to read it, or if you would just like to chat via email I would love to hear from you - cskova01@ladyoflyme.com
Keep fighting on
- Christina

Reply
Wille
5/18/2015 12:21:39 pm

I am on a similar journey, although it looks like my problem may be mold and not Lyme. It took about 16 months to get from the point I became ill to that diagnosis, and I just wanted to reflect on some of the things that preceded that.

While sick, I went to numerous osteopaths, who diagnosed me with a variety of nutritional defects, methylation issues, and adrenal fatigue. This in turn led to me being on 40 supplements a day, not feeling any better, and making almost no progress toward a cure. Fast forward many months: a local allopathic physician tested my pituitary hormones and they were all through the roof. My adrenalin was well into the red line. My testosterone, other sex hormones, ACTH, etc were all through the roof. He observed the number of supplements I was taking and demanded I stop them all cold turkey. I am sad to say I did this and instantly felt much better. The diagnosis of "adrenal fatigue" - based on a spit test - was in fact 100% the incorrect diagnosis. Serum and 24 hour urine measurements indicated I was actually in adrenal overdrive. Stimulating my adrenals was a bad thing to do.

The whole methylation defect "cottage industry" also looks to be a very ineffective way to address what ails Lyme and mold patients. You see thousands of patients online chasing their tail trying to correct methylation defects, but I have yet to find a single patient whose underlying disease is cured by addressing methylation. For my case, all of those B vitamins simply sped up my metabolism, which was already in huge overdrive condition because of the chronic inflammation from mold. This is an area where the theory is still too new, and the actual body is probably more complex than our ability to address the defects. I'm going to come back to methylation eventually, but I will closely monitor metabolites to better document what was broken initially, and what changed after therapy. But I now view correcting these problems as a way to improve performance, but I do not see them as a necessary condition for treating an inflammation based disease.

The nutritional defect "cottage industry" did not serve me well either. I took a gadzillion supplements, and none of these cured me. In fact - as stated above - when I stopped taking any supplements I started to feel dramatically better, quickly. I now take minerals - once every three days or so - and I take fat soluble vitamins - to address possible fat-soluble deficiencies induced by cholestyramine - every day. Aside from that I am off the supplement bandwagon.

What improved after I came supplements? First, my pituitary hormones started to come down, slowly. Every month we remeasured and they were a little lower. Second, I had "pyluria" and was drinking six to seven liters of water a day and could not hold hydration. That stopped too. Now I drink about 3.5 liters per day and feel better water balance. I still have inappropriately low anti-diuretic hormone (ADH), but I am attributing that to the mold problem and I feel it is best addressed by the Shoemaker protocol and not by random supplementation.

What has started to work for me is the Shoemaker protocol. I have a huge problem trying to identify the source of the mold at office and home, and the remediation for this will be a lot of money and time. For now, I have turned off the HVAC system at home and am trying to manage by opening windows and circulating air through the home with a whole house fan built into the attic. The cholestyramine is starting to have a very good effect for me. My worst symptoms like tinnitus still persist, but I am starting to have days that are less and less terrible.

On the cholestyramine, have you ever been able to get up to four 4 gram doses per day? For mold that is the therapeutic dose. I get benefit on three doses per day, but not much benefit from two doses. Shoemaker says one dose per day has no therapeutic benefit.

Having spoken to a lot of patients, it is my general observation that a lot of the people with genetic susceptibility to mold improve dramatically on the Shoemaker protocol. I can't say the same for nutritional supplementation or methylation. Based on the fact that I have incredibly awful genetics for mold (haplotype 4-3-53), high biomarkers for chronic inflammation (e.g., C4a is high), and low MSH, I think Shoemaker protocol offers me the best chance of a cure.

If you have gone through the Shoemaker diagnostic pathway, it would be great to see you publish an article with the values on your Shoemaker biomarkers (e.g., C3a, C4a, MSH, VIP, MMP9, etc). Most of these are done at Labcorp, and just a caution that Shoemaker now believes that only Qwest does the C3a and C4a tests correctly.

Forgive all of this long-winded background, but the point is have you ever thought about doing an experiment where you just stop supplementation for two weeks and see how you feel during and after that experiment?

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