Tag Archives: fighting lyme disease

Health Update- April to August 2020

21 Aug

Oh dear, I haven’t done a health update since March! It always makes writing these out a bit more interesting when such a length of time has passed. So because of that, I’ll just tell you that from March until around the end of June, I was struggling with debilitating fatigue and joint pain.

And here it is now, nearing the end of August and I’m determined to finish this! Part of the problem is that when I have been feeling well enough to be slightly human, I’ve been focusing on other projects instead of SGL. I really do want to change that and today is the first step in doing so.

SO. Yeah, debilitating fatigue has carried through this latest month as well. With some migraines off the charts.

Overall Health: Ups and downs these past months. But, bad fatigue and getting hit with severe migraines.

6/1-felt tired when got up in am. took hr nap, felt a bit better. head didn’t hurt much, felt well enough to go to dog park. fatigue hit early afternoon. migraine at @ a level 4 at 3pm. calf hurting pretty badly, almost at cramping point in evening. Some migraine but not that terrible. -i’ve noticed that i’m not as itchy or flushed. hands still swollen most mornings. since starting the adrenal support, i think i’ve felt a wee bit more energetic w/ a bit less brain fog.

2nd- very strong fatigue. took 2 naps and didn’t do much at all, all day b/c of it.

3rd-IV late am. strong fatigue all day but antsy energy in afternoon – normal after an IV. migraine kicked up in early evening, calmed down though. YI pretty much gone, heat rash chill today, brain fog strong, mood a little improved. allergies not so bad either. increased adrenal support to 2/day. needing ice pack at bedtime

-think i need to decrease the Yin Chao to 1/day, see if upset stomach eases

4th-woke up w/ migraine, stayed all day. only taking 1 yin chao, helped stomach.

~days in between- lots of naps, fatigue, brain fog. some mood struggles too

8th-started molybdenum. low migraine in am but was able to go to costco. bad fatigue hit on way home, lasted pretty much the rest of day. long nap and doing nothing.

10th- felt a little better, little bit more energy even tho the fatigue kept me blurry brained and was still down most of day. dogpark in am, migraine increased in evening.

April 9, 2020

-started progesterone creme on 11th. have still had strong fatigue but have had strange energy a good portion of both days 11th and 12th. calves are really painful, esp left. got heating pad that helped. brain fog strong. -fatigue has not been as overwhelming as it was in june, pain overall has diminished. still very tired & days of pain though. occasionally more sensitive to light.

9th- itchy in evening. calves are in a lot of pain, twitches on right side. some in left hand too.

13th-felt pretty decent today, til @430. got hit w/ overwhelming fatigue. lasted rest of day. migraine kicked up to an 8 minimum. ice pack at bedtime for first time in @ a week.

16th-felt pretty good all day. got quite tired in afternoon but not awful. stomach upset after dinner,not sure why? fatigue has increased since starting olivirex again (on the 17th). upset stomach many evenings.

22nd-strong fatigue, took nap in afternoon. lost vision in left eye at 830, ice pack, pain pills and short nap helped but then migraine came in. went to bed at 10pm. first time in a long while that i’ve been hit with one of these.

eyes still blurry and kinda painful the next few days. tired. achy. weak.

25th- vision loss again in late evening. cried. pain pills, ice pack, slept about 3hrs in evening. next day took 2 long naps, eyes still hurting a lot, achy body, just sluggish all around.

27th-felt better today, no nap. was able to write/read w/out too much trouble but eyes still painful and need glasses more than normal. completely on LH diet as of monday.

august 4th-good energy in am, minimum pain. fatigue hit @ noon, 11/2 hr nap late afternoon. joint pain kicked up early evening, migraine after that. close to cycle.

9th-fatigue and migraines the past 3 daysish. naps. not much other than ice packs, helping with migraines.

May 7, 2020

Migraine: They aren’t responding to normal treatments as readily. And I’m in the midst of one that’s been going on for almost a week now that I just can’t get rid of completely. I did have an appt with a neurologist for the first time in years and now have some new prescription meds to try and get these things under control

Sleep:  I’m getting about 7 hours each night, with the normal 2 or 3 wakings. I do frequently take involuntary naps however. And I’ll add that I never feel rested after sleeping. – this hasn’t changed at all since march.

May 13, 2020

Memory/Brain Fog:  This has improved some, but when the brain fog hits – it hits hard and doesn’t want to lift for quite a while. – again, this hasn’t changed.

Vision: Scintillating scotomas have made themselves known the past month odd. my eyes do hurt fairly frequently now and sometimes just don’t want to focus right away.

June 11, 2020

TMJ:  My jaw has been tight/tense more lately and has been popping every so often. So this has increased although it’s not where it used to be. I’ll add that i’ve not been as diligent about wearing my night guard when I nap like I know that I should be…

Fatigue: This has been my biggest, most constant struggle for months now. My body just drags and aches every day.

Fibromyalgia:  This has eased a bit lately. still present in joints though – especially in elbow and knees.

Weight Loss: Not much, but a little! And i’m excited for that.

Mood: Mostly this has been good…

Digestion:   This has been perhaps, a teeny bit better since going on the Low Histamine Diet at the end of last month? I was hoping that there would be more noticeable improvement in this area though.

July 23, 2020

Here’s a list of symptoms that I don’t have as often lately:

-pain in hands/wrists

-severe calf cramps

-nausea from lights/sounds

-falling asleep standing in lines

-exhaustion from standing in lines

-jaw popping/getting stuck

-nightmares

-excessive itchiness

July 26, 2020

So, I guess that I’m still in the midst of that flare that I mentioned back in March. Which explains why I’ve been becoming more of a hermit, I suppose.

~Laura

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.

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

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

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.

Screenshot_20200129-133731_Instagram

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!

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 

Health Update July 2019

3 Aug

It’s funny how the hardest part of writing these updates is this introduction. I rarely know just what I want to say right off, so I end up staring at the page, wishing I could just write something, because the rest of the post is done and then I can finish it off! Alas, intros are hard. Apparently. Maybe not for you though.

Anyhow, I’ve gotten this one written up at last.

fightinglymemigraines

 

 

Overall Health: I think I can say that, yet again, I’m doing better. Fatigue, while less than it was, is still a major struggle. My fibromyalgia has kicked up in my back and calves/feet again.

7/22- increased LDN to 2.5mg a day.
7/24- started atovaquile, taking at breakfast – before 9am. Felt decent all day,  worked in yard am.  Tired in evening but no big crash
7/25- fatigue all day long. Felt good aside from it. Couldn’t nap.  Migraine tried to flare mid aft. 
7/26- felt well,  cleaned in am.  Fatigue hit around 11am. Related to new pills? 
7/29 increased  LDN to 3 mg. Slept better,  fuzzy brain early am next morning
7/30 – felt good in am,  cleaned house and worked out. Tired in aft but not overwhelming.  Napped after dinner.  Migraine kicked up to a 7? Back/left calf hurt evening and all night. 

7/31 – ran errands in morning, felt ‘off’ and was sensitive to smells while out.  vision loss and nuclear migraine early afternoon, slept/cried/iced for about 4 hours, felt decent enough to get up and make dinner.

8/1 – fragile and dealing with aftermath of nuclear migraine. trying to keep the migraine from flaring again

Migraine:  Only one nuclear migraine (and that was the 31st!)  Mostly, the pain level gets to an 8. And hovers. I’ve had a bit of the odd visual auras (which I found out at my last dr appt that it’s called scintillating scotoma) but not near as much as last month.

Sleep:  I’m still getting 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. *yes, this is the exact same as last month!*

Screenshot_20190802-120408_Instagram

Memory/Brain Fog:  This has improved a little bit more – I’m noticing I’m able to recall words/names easier. But when the brain fog hits – man, it hits.

Vision: The auras have eased.  I just talked about this in the migraine section – go check out that article, it’s about these colors/blur/black spots. Well worth the read.

TMJ:  I’m happy to report that my teeth don’t ache very often anymore. I’ve still been taking naps without my night guard (shame on me, I know) and that is when my jaw is most tense but… well, I figure that’s my fault. It only pops a few times a week now.

Screenshot_20190802-120336_Instagram

Fatigue: This has decreased a bit, it still hits me and when I take naps they can be a few hours long, but I’m not taking them every day. And I’m not falling asleep directly after dinner either –well, mostly. Overall, I’m able to do more, I just have to space things out and be aware that I need rest times in between.

Fibromyalgia:  As I said above, my back is hurting again. And, I still have my calf aching/cramping/burning pain fairly regularly and my feet do these ‘great’ little nerve freaking out sessions.

Weight Loss: Minimal, but I’m determined to focus on this again!

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. – this reminder is still real guys.

Digestion:   This is still, thankfully, at my normal.

Screenshot_20190802-120351_Instagram

As my notes said, I started taking atovaquile just over a week ago. I haven’t noticed any negative or positive side effects from it yet, so I’m waiting to hear back from my doctor. She has me on it for 30 days, just to see if we can kill off some of these buggers. (no, I’m not very technical, sorry.)

I’m still taking NP Thyroid every morning. As well as LDN every evening. Each week I’m increasing that dosage until I hit 4.5 mg.

Since I can’t remember the last time I updated my full list of supplements/vitamins, I’ll share them with you today:

Andrographis

B2

Bearberry (I’m finishing up the bottle I have and then stopping)

Butterbur

Berberine

Calcium

Chaste Tree/Vitex

Complete Mineral Complex

Feverfew

Fibronol

H2PLX

Horse Chestnut

MG

St. John’s Wort

Turmeric

COQ10

Iberogast

Xiao Chai Hu Tang

Liver

And that’s it folks, if you’ve got any questions, I’ll do my best to answer them. I did want to share the post that I wrote about the scintillating scotoma (before I knew what they were called).

Thanks for stopping by SGL today,

Laura

 

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