Lyme and a Coconut

chronic lyme disease with a taste of nut

When the Day Came

Apologies for updating you on the big LLMD appointment almost a week after the fact. I’ve been feeling pretty oogy but that is to be expected with new treatment. The norm is, just so it’s understood, that you feel worse before you feel better. This is because, when being given supplements, antibiotics, anything good, my body – which has been attacking itself and all the good parts in it – is confused and unsure as to why toxins are leaving. It’s like you don’t know who is your friend anymore and half the party leaves and you don’t like that so you treat the rest of the guests like crud.

It’s been a cruddy week. But I’m getting ahead of myself.

The appointment, itself, went very well. Dr. W. (as he will henceforth be called), the LLMD, was a great man who really knew his stuff. I understand that even LLMDs can disagree over treatment options and what-not, but that’s ok. The clinic, itself, is a darling place – very homey and inviting.

My car overheated in a strange way on my way there and I almost didn’t make it. I blasted my heater in the car and drove at a very slow pace and, believe it or not, I arrived 10 minutes early. That just proves how obsessed I am with being early to things. I’m early to being early!

So I was glad to be there. I didn’t even care about my poor dying car. I was so grateful to be there and to see Dr. W for the first time.

I sat with my folder of maladies (i.e. health history, see below) and waited for him to call me in once he finished reviewing my paperwork.

folder of maladies

my oh-so-fashionable compression gloves that have become my best friend because my hands can’t tolerate any kind of cold.

I entered his office and he informed me right off the bat that if someone checks practically everything off the symptom list, as I had done, he has to take a certain approach, to treat as though I have whatever the symptoms show. This is common among LLMD and though it goes opposite to what our traditional medicine-minds think, it does make quite a lot of sense, especially financially-speaking. He informed me that we would not be doing antibiotics for lyme yet. We’d do a lot of blood tests and look at the all-over picture since my all-over body was suffering so much.

He decided to tackle three things that day: my brain, my gut, and my adrenals. My adrenals are under considerable stress; adrenal insufficiency was mentioned. I sighed inside because I had mentioned this many times to my family practitioner but she had never done a thing about it. She hadn’t even acknowledged my concern at the time.

Dr. W is an in-your-face kinda guy, with a lot of heart. He does not mince words and informs you of his opinions easily. I admit that my formerly timid mannerisms showed themselves a little in the beginning as I felt a bit intimidated, but I told myself that no one else was going to speak up for my body and I had to be a good advocate. I had to put the big girl pants on and tell him exactly what has been going on and ask all the questions written down in one of my many notebooks filled with such questions.

He told me I would start a ketogenic diet as well. It emphasizes no sugar, low carbs and high (good) fats. While still remaining gluten-free and dairy-free, this wouldn’t be a huge change for me. I’d have to make sure I actually ate a lunch every day and I’d also have to eat more meat, cut out sugar entirely (that’s very hard), and cut out sources of sugar hidden in surprise items, like fruit. Oh, fruit is great, but 1 cup per day. I’m basically re-training my body to burn fat as a fuel instead of burning sugar.

These kinds of restrictive diets have become normal for me, but it is still never fun. I look at my family eat their carb-loaded and processed stuff and I long for the salty, sweet, greasy goodness. Yet I know that they should not be eating it either and might pay for it later. I certainly hope not. Maybe I can be an inspiration? Tell that to 3 hungry kids!

Dr W gave me some vitamin supplements and ordered low-dose-naltrexone for the brain/mood issues.

An interesting conundrum came up that I think is worth mentioning. Since I saw him on a Thursday and his clinic is closed on Fridays and on weekends, I couldn’t ask any questions when I most needed to. My biggest question was, do I take all the prescriptions and supplements at one time or can I go on them one-by-one?

I stayed with my family in Chicago and they encouraged me to not go against doc’s orders and to do it all at once. Understandably, they didn’t want me self-diagnosing or deciding when to administer the medication. Having done research on how one is treated for these issues, however, I knew that much of it was trial and error and you had to do a lot of it as your own best expert. The LLMD is the most knowledgeable person on the human body, but you are the expert on your body. A good LLMD will know that, too. As I tried to tell the family who loved me this, I realized how hard of an idea that is to wrap your mind around in today’s medical culture which holds MDs up to such high standards, almost god-like. I know I spent much of my life thinking doctors had the answers to everything and when I disagreed with them they must be right and not me. I didn’t have the diploma from fancy schools, after all.

I am not disrespecting doctors in the general medical community. A family member is becoming a doctor as I type this. And she will be a fabulous one, too (hi, T!)! However, when it comes to listening to our own bodies and taking that information to our doctors with the expectation that we be taken seriously – that is a rather unique notion. And, certainly, having a medication protocol a doctor put you on and then deciding your body is too sensitive to start it all at one time is quite the radical idea. I struggled all through Friday, stumbling on a low dose of steroid and two different vitamins.

Saturday I took a different approach. I started on a low dose of the methylfolate I was given and decided to slowly work my way up to it. I’d call Dr. W. on Monday morning to ask my many questions.

Long story short, I am glad I was at my aunt and uncle’s house because I did have some difficult reactions to the methylfolate and supplements. My irritability waxed and waned, but my worst symptom became light and noise sensitivity. Sunday night I arrived back home and the stress continued. A sinus migraine immediately came upon me and Monday, Tuesday, Wednesday, Thursday, and Friday nights were all painful.

However, after talking to the assistant at the clinic, Dr. W. told her to tell me it was completely fine to take one pill at a time to see how my body reacted to it. How could I know what side effect was from what if I didn’t do it one at a time? I gratefully told my family this news so hopefully they feel more at rest.

Monday night I experienced a new level of pain in my right side – leg and arm, with muscles twitching beneath the skin and skewering pain stabbing me in the shin for five hours. I had to take something to make me sleepy in order to go to sleep; the pain was so bad.

As usual, though, it was better by morning. This week has been very humid and walking from air conditioning to the heat really impacted my pain levels. I made a trip to Woodman’s (grocery store) which always results in a flare-up of pain and fatigue. So the week was rough.

I kept on the treatment train, though. I slowly increased the medications and supplements. Dr. W. told me to go off the methylfolate and see if the headaches got better, but oddly, they worsened a great deal so I returned to the methylfolate the following day. I paired the B Vitamin with it the way it was prescribed and figured out that good ‘ol Dr. W probably meant for the B Vitamin to complement the Methylfolate. I did some research and – yes – this form of B Vitamin helps the methalation of folate. That whole side of things can be explained here, if you are one to do research like me and don’t mind a lot of medical jargon.

My depression and anxiety did rise and dip this past week, but I’m used to that. I think the big change came today – Saturday. It’s the first day I am on the full dosage of all of the items Dr. W gave me. I have some general pain and my sinuses don’t feel quite right (which could be normal allergies) and, yes, I am starting to wear sunglasses everywhere I go, inside and out, because of how badly light aggravates me (I joke to my kids that I just flew in from Hollywood) and I have to keep turning the volume down on the radio which makes me sad because I love to sing in the car. BUT…I’ve been able to tolerate it all as of today. I found I had more energy today than on some days. I also found I was able to handle a huge stressor with grace and peace. Now THAT was not because of a pill, but rather because of God – but my ability to not drown in anguish and, instead, turn to the Lord in my time of need felt…easier to do today. And for that I am grateful.

So, long story long (as opposed to short, which my blog posts never are), I’m having some uncomfortable side effects, whether they are from the pills/supplements or from my new wacky ketogenic diet, but all in all I think I can handle it. When I talk to Dr. W. next I will ask him about the neurological aspect of things and also how he feels about herbal tinctures. I have not yet started the low-dose-naltrexone (LDN) and am planning on starting that next weekend. I don’t want to have to work when starting it just in case there are big side effects.

plethora of lab tests I brought with as back-up

plethora of lab tests I brought with as back-up

Thank you for reading my update and thank you ESPECIALLY for helping me pay my bill! The GoFundMe campaign paid for much of that first appointment. I only had to pay for $74.00 out of my own pocket so THANK YOU so much from the bottom of my heart. I am still so humbled and grateful from the outpouring of love and support I received. Know that your money went to good use. Dr. W. took many blood tests including the Western Blot (always iffy), heavy metal toxicity testing (for mold, mercury, etc), and so much more I couldn’t even name it all here. Just know that every penny went into a monumentally important thing. Though I hope to stay with Dr. W. until I am in remission, I understand that some people have to try out different LLMDs due to their differing approaches and if that should happen, your donations did not in vain. I am so relieved to have had that first appointment because now…NOW…

We are finally on the road again.

Hopefully on the road back to health.

Blessings to you!

Lymie out…

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This entry was posted on June 27, 2015 by in controversy, faith, GoFundMe, hope, strength, symptoms, update and tagged , , , , , .
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