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Health Update – Sept 2020

Hello! Thanks for coming to spend some time at SGL!

This time around, as I didn’t take any notes at all this past month on how I was doing, I decided to go through each symptom and fill them out. I was surprised at how often I wrote something along the lines of ‘this has eased’. Even with that being the case, I’ve still been a veritable wreck, so please don’t think that I’ve made some big strides in healing! If that were the case, I’d be announcing it loud and clear on here, believe me! Sometimes, even if things have calmed down, they are still overwhelming and difficult to deal with on a day to day basis.

Overall Health: Very back and forth – Severe migraines and crashing hard for hours at a time to feeling pretty well.

Migraine: It’s still too early to see any changes due to the Aimovig (monthly migraine shot) as I need to take 3 doses before I’ll hopefully start to see improvements. The Rizatriptan that I’ve started taking when they go nuclear have been good to have. Only once did it not seem to help, otherwise, they knock the pain out without any negative side effects. (I have been taking 1/2 a pill only). In this past month, only one nuclear migraine hit- but that lasted several days. Otherwise, the pain has responded to treatments well – and I’ve been able to go to bed without an ice pack several nights.

Sleep: This has been rough for multiple reasons. I took melatonin a few nights.

Memory/Brain Fog: This has improved a tiny bit more, I think

Vision: The odd not-wanting to focus issue has pretty much disappeared. My eyes aren’t hurting as often as they were, either. (not to say that they aren’t hurting at all anymore, it’s just not as often)

TMJ: Less popping, but still often tense and painful

Fatigue: After my nutrient IV, this eased some. I decided to increase Olivirex from every other day to every day – but it caused such terrible fatigue that I backed off of it again. I’ve actually not taken it at all these past 4-5 days. Noticing a big difference, even while on my cycle.

Fibromyalgia: I can’t believe how much this has eased. I still have slight aches in knees and elbows but it’s mostly ignorable. My left calf is still pretty bad but it’s eased as well.

Weight Loss: Baby steps by baby steps, it’s slowly happening

Mood: Oof da. Oy Vay and Augh. This has been a definite struggle.

Digestion: Back to my normal, and perhaps a little better than that even

My current protocol:

Biocidin, G.I. Detox, Olivirex, Biofilm Phase-2 Advanced, Low Dose Naltrexone, Xiao Chai Hu Tang, Candidastat, Yin Chao, Molybdenum, Berberine as well as CoQ10

~Laura

Tags: chronic fatigue, chronic fatigue syndrome, chronic illness, chronic migraine, chronic migraines, chronic pain, chronic pain management, lyme, lyme disease

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Health Update January 2020

30 Jan

Hello again friends, thanks for coming back to SGL. It has been several months since I’ve done a health update and I honestly debated about continuing them. But, as I decided the beginning of last year, I need this monthly posts to help me keep an idea of just how I’ve been. It’s so very easy to get lost in the day to day haze of pain and brain fog that I can’t recollect the better days – or the worse ones.

The other thing I wanted to do was to change up the format for them but I couldn’t figure out a way to do that, that would still provide the information that I need (and that I want to share). If you have any suggestions, or a blog to recommend that does regular health updates, I am definitely open to hearing them.

fightinglymemigraines

As a look at Overall Health, it’s harder to peg this one down since it’s been so many months. I have had good stretches alongside ones that I barely dragged through each day. I do feel like I’m in the middle of a better stretch – this would mean that my fatigue isn’t so overwhelming, migraines are calmer/respond to treatment, brain fog tends to be a little less, etc. And let me tell you, I’m so thankful for this pause in extreme pain.

Let’s move on to the rest of the update, shall we?

Here are the notes that I kept on my phone:

Nov 30 – exhausted and headachy all day. Took 2 short naps. Cycle due any day. Hungrier than normal past few days.
Dec 2 -mega fatigue all day. Took 2 naps. Migraine kicked up bad , hard to get the pain to ease. Tylenol, Bayer, ice pack and a nap finally did.
11th – woke up with fatigue and migraine, pretty severe till @2pm. Felt better but still both present all day. A bit moody in evening
12th – woke up pretty good, pain hit @2pm, finally eased @4. Left calf and foot hurting and painful cramps. Poor circulation in legs recently . A bit moody in evening again.
14- woke up exhausted. Fatigue staying all day so far. Some head pain as well
Dec 29- very busy day in bend. drove home in evening. No major migraine/fatigue/crash whole time we were there. Did really well
Dec 30 – woke up very tired but ok. Took nap early afternoon. Ran errand. Felt really good early evening. Aches and migraine kicked up in evening. Soaked feet and took tylenol, eased it.
Dec 31 cycle started. Felt pretty well all day, tired but not terribly.
JAN 1ST- cycle aches all day. Lazy day with minimal activity. Joint pain increased in evening. Went to bed with ice pack on knees. It’s been weeks since I needed that

Jan 14 – introduced bananas back into my diet. Felt good in am, very tired by noon. Pretty short attention span all day. About an hr nap after lunch. Exhausted and achy pain suddenly in evening. Was able to calm it down decently with ice and tylenol.

Sept 12, 2019

Sept 24, 2019

Migraine: the severity has decreased most of the time. Sometimes, I get sideswiped by a particularly nasty one however. I’m still taking 4.5 mg of the Low Dose Naltrexone every night and I believe these have helped a lot.

Sleep: I’m getting about 7 hours each night, with the normal 2 or 3 wakings. I am also putting this to the LDN’s. I do frequently take involuntary naps however.

Memory/Brain Fog: This has improved some, but when the brain fog hits – it hits hard and doesn’t want to lift. Sometimes I won’t notice how bad it is until I leave the house/try holding a conversation with someone

Sept 26, 2019

Oct 18, 2019

Vision: I have had several scintillating scotomas, and do occasionally have times where my eyes just don’t want to focus.

TMJ: My jaw doesn’t pop very often at all anymore and mostly, this pain has diminished. It’s never gone completely, but many days it’s not so severe that I am distracted by it.

Fatigue: I am able to push myself more than I have in years, probably. But, of course, I do have days where I just am relegated to the couch because I am so fatigued. Or that I just need to space out what I plan, to give my body the rest it needs. – this hasn’t changed much from my last update back in August

Oct 24, 2019

Nov 10, 2019

Fibromyalgia: This is a persistent, constant pain. Especially in my knee, elbow, ankle joints. Frequently it rears in my hip as well. I have noticed the random twitches that I get have been increasing over the months.

Weight Loss: Not at all. It’s been more of a weight gain issue. Very frustrating.

Mood: This has been very back and forth lately.

Digestion: This has been good for me – which means, still not where it should ideally be, but for me, it’s okay.

Dec 14, 2019

Earlier this month, I did some blood tests and am waiting to talk with my doctor about the results. I am, of course, hoping that they will reveal just what is going on inside me and will give us a path on which to base the new protocol that I’m going to start.

Over the month of December, I cut out ALL sugars – even natural – in the hopes that it would ease some of the inflammation in my body. But it didn’t seem to do anything, so I’ve been able to add bananas and honey back in. I’ve been adding them back in very slowly, trying to keep track of how I react. I am looking forward to adding strawberries back into my diet soon!

Jan 7, 2020

Jan 13, 2020

I hope the pictures (that I grabbed from my Instagram account) give you maybe a better idea of the ups and downs these past months. Due to a lot of negative comments, I’ve really cut back on the ‘pain’ photos that I feel tend to capture the level of pain that I’m in, so it makes it a bit harder to really get the point across. Because of that, I’ve noticed that I don’t share quite as much on IG as I used to. But since it’s still the biggest part of my life – this fighting for my health – I’m going to try and share more of both the dark days and the better days. I’d like to also increase how much I talk about chronic illness here on SGL. If there’s any topic you’d be interested in reading about, please ask!

If you’ve made it all the way to the end of this post, THANKS! I appreciate you giving me some of your precious time,

Blessings,

Laura

Tags: chronic fatigue, chronic fatigue syndrome, chronic migraines, chronic pain, fighting lyme disease, health, late stage lyme, lyme, lyme disease, migraines, natural treatment for lyme, symptoms of lyme disease, tmj

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Categories health

Health Update June 2019

28 Jun

When I go to write these health updates, the very first thing I do is pull out my phone and go to my notes. Where I’ve faithfully – or not- kept a log of how I’ve been feeling. Then I’ll email that log to myself and copy and paste it below my Overall Health section… (the wonders of technology that makes that so simple). Well. When I just searched for it, apparently I didn’t put down one day in my log for this month. Not even one day! So, I’m having to rely completely on my memory for this post. Which should be interesting…

fightinglymemigraines

Overall Health: I hesitantly say that I’m doing better than I was at last month’s update. Overwhelming fatigue and visual auras still command much of my attention though.

Migraine: Thankfully, I haven’t had more than one turn into a nuclear migraine but there have been several that have wanted to. Mostly, the pain level gets to an 8. And hovers. There have been several days that I didn’t need a clonidine until later in the afternoon, and others where I was taking one right after getting up (and all through the day) and yet nothing would touch the pain.

Sleep: I’m hitting 6 to 7 hours a night, with at least 3 wakings. Majority of them I need the ice pack on the pillow. But there was about a week where I barely needed the ice pack.

Screenshot_20190627-144236_Instagram

Memory/Brain Fog: This has improved a little I think.

Vision: The auras just don’t want to go away this month. Most days I have a vague sense that my vision is off somehow and others, I get the more intense colors/blur/black spots. Thankfully so far this month, I haven’t lost sight in my left eye at all.

TMJ: This is about the same as last month although since I’ve been randomly falling asleep during the day (this means without my night guard), my jaw is tenser and my teeth ache a little more. Other than carrying my night guard around with me, I’m not sure how to help this.

Screenshot_20190627-144226_Instagram

Fatigue: I can’t even tell you how much this has decreased you guys. Partly because it would be hard to describe that change and yet get across how much it is still affecting me -and like I’ve mentioned above, I’m taking almost daily naps. Most of them are right after dinner (picture me dragging myself from table to couch without cleaning up from the meal type of tired).

Fibromyalgia: Even with cheating last week, this hasn’t been near too terrible. I still have my left side (especially my calf) aching/cramping/burning pain fairly regularly but the intensity has eased.

Weight Loss: Minimal

Mood: I’m very pleased to report that this has mellowed out again and I’m certain it’s because I started back up on Xiao Chai Hu Tang. Remind me to stay on these chinese herbs. It’s worth it.

Digestion: We’re staying at my normal! Which, is clearly not what it should be but I’m okay with it for now.

Screenshot_20190627-144250_Instagram

SO. I’d like to state the reason for my improvements for this month.

We took me off the doxycycline. The day before I went in to my doctor, it hit me that I’d been feeling awful for 6 weeks. And I’d been on the doxy for….6 weeks. My body just couldn’t handle it. You know what else has disappeared? The rash all over my face.

I am still taking the NP Thyroid and believe that it’s helping my fatigue.

It’s been a slow battle coming back from being on that antibiotic and I’m thankful that I’m getting back to how I felt before. Of course, it’s frustrating that I fell that far downhill but I’m glad I tried it because now we know.

As of the 24th, I started LDN’s (low dose naltrexone)- we’re targeting my migraines with this. I’ve been told that they are tolerated very well. We’ve started me out at 0.5mg and are going to slowly increase the dose til I reach 4.5mg (which is the standard dosage). I had to really force myself to do this – after such a strong reaction to the antibiotics, I really just wanted to curl up and lick my wounds. But I knew that that wasn’t the right decision. I can’t waste any more time that I could potentially be getting well, just to get over fear. Sometimes, that’s the right choice. But this time, I knew I had to push myself and just try it.

Because I can’t even imagine life without migraines. I’ve been having them since I was…18 or 19. To go through a day, two days, a week! without one… Ahhh, what a thought. And if we can get these to go away/ or just minimize them, we believe that some of my other pains will ease as well.

So here’s to being bold and trying new things in the slow journey to health.

~Laura

Tags: babesia, bartonella, chronic fatigue, chronic illness, chronic migraines, chronic pain, coinfections, fibromyalgia, lyme, lyme disease, migraines, natural treatment for lyme, tmj