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
Current Protocol
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
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.
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.
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,
Hello again friends. Thanks for stopping by SGL for this month’s health update. Fighting Lyme Disease is definitely the hardest thing I’ve done – and that will probably always be true. This journey to health is so up and down that it’s easy to get disheartened. Thankfully, I’ve been coming out of the crash I was in and have been able to enjoy the last bit of summer. As well as start preparing for a new addition to our little family come the beginning of October.
Overall Health: There’s improvement in the wind, folks. I stopped taking the atovaquile/Malarone and my fatigue diminished greatly.
8-5 tired all day and dealt with keeping migraine down BUT, was up and about a lot. Had odd energy, pretty clear brain too 8-6 crushing fatigue late am on. Some fibro in feet and calves. RELATED to: eating corn? Overdoing it yesterday? 8-7 better, about halfway between the 5th and 6th. Still fatigued but up and about. 8-8 low energy and so fatigued again 8-17 Started cordyceps 1/day am. Decent energy, tho tired in am, fatigue hit afternoon but didn’t nap! Fell asleep at 9pm. 8-20 increased cordyceps 2/day. Fatigue still very strong. 8-23 drove to bend. Seized back had eased enough from Wednesday eve. Felt pretty well all day, took short nap late afternoon. 8-24 – stomach upset off and on all day. Decent energy. Some fibro flaring in my feet. Since stopping the Malarone on the 22nd, fatigue has eased considerably. Rash on face is still present, flares every 4 to 5 days probably. (Strange)
Migraine: One near-nuclear migraine with several that were really hard to get the pain level down. But, I really am surprised at how these have minimized. Now, before you get too excited, I do still have pain every day. But there’s been more days that I didn’t take any Clonidine til evening. I am chalking this improvement up to the 4.5 mg of the LDNs that I take every evening. (Low Dose Naltrexone).
Sleep: I’m getting more like 8 to 9 hours each night, with the normal 2 or 3 wakings. I am also putting this to the LDN’s. I haven’t been needing naps daily either, which is so very nice.
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. *same as last month
Vision: The scintillating scotomas have eased since I stopped the Malarone. I did start to lose my vision once this past month.
TMJ: It’s been hurting a bit more but I still am blaming that on the fact that when I nap, I don’t put in my night guard. It has been quite tense this past week though.
Fatigue: As I said, this has decreased even more. 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.
Fibromyalgia: Thankfully, this has eased as well! I only get the nerve pain in my feet when I’ve been walking a lot (or have sugar). My calf has calmed down SO much. My back has seized up twice this month but I think that’s because of my weight.
Weight Loss: Nope. But, I’m trying to get out and walk more and do mini workouts when I feel well enough to.
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. *I’m leaving this up because I’ve increased this to 2 tsps a day and it’s so worth it.
Digestion: This has been a little more touchy lately. Out of the blue my stomach will get really upset. I have some ideas of what maybe I’m not digesting well but…
Now, if you’re interested in what prompted me to stop taking the Malarone after a month of taking it, I’ll tell you. My doctor really wanted me to stay on it but a few days before heading to visit my parents, I was thinking about it and the 3 hour drive and all, and I realized that I just couldn’t do one. more. day. of taking the pills that were making me feel like I was going to fall asleep at any moment. Or that were causing major brain fog, increased scintillating scotomas and increased fibropain. I debated about it, researched it, but decided that I know my body best, and that I was just at the end of what I could stand. Within just 12 hours of stopping, I could tell a difference. And then, just days after, there was even more of a change. I’m so glad I remembered to be my own advocate.
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.
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!*
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.
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.
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).
All I can say is at least I’m getting this up before June starts. My levels, and types, of pain have made getting this post up such a bear.
Overall Health: It’s been a roller-coaster ride these past six weeks. That’s really all I can think to say about it. I went from doing pretty well during the days and crashing so-so in the evenings to….rough days and passing out at 8pm because I just can’t stay awake any longer. (only to wake up an hour later and not be able to sleep again til midnight.)
Apr 16 started doxycycline Apr 30- good energy most of the day. 1 mile walk plus housework. Migraine kicked up afternoon, clonidine calmed. Started thyroid 9am. Tiny bumps on face in evening, not sure why? May 2- decent energy in am, hit with fatigue around noon. IV in afternoon. May 3- felt pretty well today, fatigue hit afternoon. Tiny bumps on face again this evening and a tad bit last night. May 5- bumps again today, also around collarbone, some itchy. Fatigue early afternoon, napped but then foggy and dehydrated rest of afternoon. Hungry like crazy in evening, migraine kicked up a lot. Observations: fibropain is less intense. Migraines are still sharp and increase a lot in evenings. Clonidine helps, overall but not always. Evening hunger is common. Fatigue is light in am but hits mid afternoon at least. Needing a nap most days. Foggy brain after. Went off of thyroid on may 11th to see if it was causing the rash on my face. Fatigue hit hard whole of following week, rash still present although not as bad? Fibromyalgia flared the same week. Started thyroid back up on the 17th. May 17 – visual aura and nuclear migraine. May 21 Fatigue has eased a little bit since Sunday. Felt off all day, fending off another crash this evening
Migraine: SIGH. The pain has been quite terrible lately, with one full blown visual aura/nuclear migraine this past Friday and three more attempting to blow up.
Sleep: I’m hitting 6 to 7 hours a night, with at least 2 wakings. Majority of them I need the ice pack on the pillow. Several I’m having night sweats -even with the ice, joy oh joy – and of course, never waken feeling refreshed.
Memory/Brain Fog: Brain fog has stayed around again. It’s kept my ability to focus on things at a minimum.
Vision: I have had four FIVE visual auras in the past week. That’s about four more than I’ve been having every few months. I’ve noticed that even in between lately, my eyes aren’t quite right. Looking at black text/white background can be difficult…
TMJ: I have just realized this has eased. My teeth aren’t hurting as much or often as they used to. It has only popped a few times in the past few weeks. My jaw still regularly hurts but overall, this has definitely improved.
Fatigue: This is still my biggest current struggle. It can go from just marginally dragging to laying me out and making me fall asleep within half an hour. (this makes for interesting planning of errands…)
Fibromyalgia: In a way this has decreased slightly. But my left side (top of head down to toes) frequently aches. If I stay away from processed sugar, the fibro stays down –remind me of this next time I’m tempted to cheat and have sugar.
Weight Loss: Non-existent.
Mood: This has been a bit topsy-turvy the last little bit but I’m sure it’s because of the levels of pain I’ve been dealing with. And hormones – hormones out of whack are fun. Eesh.
Digestion: We’re back to my normal! woohoo!
Like I said in my notes above, I went off the Thyroid for several days to see if the mostly invisible rash that has appeared on my face was connected to it. I’m fairly confident now that it’s not, but the rash is still there (at least it is mostly impossible to see!) and I’m not sure why. I’ve also been trying to tell if the doxycycline has helped any of my symptoms, but really, with how I’ve been feeling, it’s so hard to separate the pain, you know? Even doing this update, it’s still all so foggy to be able to tell. I’ve also only been on the doxy for a month and a half, so I doubt that’s long enough to be able to tell anyway.
I will add about the Thyroid though, that I think the fatigue was going down after I first started it – so I’m hoping that will start happening again soon. I mean, I was taking Abby on a mile walk in the mornings, doing some house cleaning and making yummy dinners. Which, for me, is a pretty full/energy burning day. And now I’m barely getting her to the park, doing maybe 20 min of light cleaning and sort of maybe throwing a semblance of dinner together. Augh. I know this journey of healing is an up and down, switchback type of road but I’m ready to be through this particular rough stretch. Especially since I know that the pain in my left side would disappear if I was able to lose some weight.
the start of a good life 