Tag Archives: natural treatment for lyme

Health Update Oct/Nov 2018

21 Nov

Hello friends! Thanks for coming by SGL for today’s update on my health. Just a quick intro for anyone new here – I have been diagnosed with Lyme Disease along with some lovely friends – like Fibromyalgia, Chronic Fatigue, TMJ, Chronic Migraines and a handful of other stuff. The co-infections of Lyme are brutal. Brutal, I tell ya. I think I can accurately say that I’m on the road to health – it’s just a switchback, up and down type of road. If you want to read a bit more – go check out my About Me page. But for now, I’ll dive into the update – hoping that this time next year I’ll be able to see even more improvements in my health.

fightinglymemigraines

 

Overall Health:  Fatigue to the max lately. Fibropain as well. I’m sure that not having an IV for almost two months (!!) has a lot to do with how badly I was flaring in October. Since then, my fatigue and fibro have continued to be intense but it is a bit less – and I’m hoping that getting them regular again will keep chipping away at it.

Oct 15- exhausted, brain fog, nap in afternoon helped but by evening whole body ached and hard to get to sleep. Severe pain. 
Oct 22- awful fibro flare in evening, in all limbs. Took 2 fibronol, 1 St John’s, 2 magnesium, 1 berberine, used tens unit on elbows and rubbed magnesium lotion on elbows and hands. Migraine kicked up but clonidine calmed it. Scale for fibro – 8 
Oct 29 stomach slowly feeling better. Taking minimum vitamins and supplements. Took 2-3 hr nap because fatigue was so intense. Day 17 
Oct 31- seems that when I limit my iberogast as well, that my stomach is some better. Today was the best day in weeks for it, although water still tastes awful and I’ve still got some iron breath. Fatigue has been very present past few days, did get to the grocery store this am before it hit. Fibropain still present in joints but not as severe.
Nov 6- IV finally! Some fatigue in am but feeling decent. Exhausted by mid afternoon/evening. Fibropain present in joints all day
Nov 7- some migraine in am.  Fibropain all day in joints, especially knees. Fatigue hit hard@ 7 pm. Went to bed at 10pm
Nov 8- woke up at 4am till 730, slept again till 93pam. Weary but feel pretty good. minimal attention span.

Migraine:  Some days I’m thinking about how much better this area is and then others I’m struggling to keep the pain down to a survivable level.

Sleep:  This hasn’t changed much at all – still needing an ice pack most every night, and typically change it out at least once. It would be nice if sleep actually helped my fatigue.

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Memory/Brain fog:  I am doing something scary – I’m going to see if taking Turmeric pills has the same result as taking the Neuroflam. I’m hoping it does because as much as I love the Neuroflam, it is at least $60 a bottle. (Turmeric/curcumin is a main ingredient in the Neuroflam) My attention span has been spotty often lately. Augh.

Vision: First – I haven’t had any visual auras! I’m very relieved by this. Thing do get blurrier than they should at times.

TMJ: This has increased in popping and pain. I’m attributing it to the fact that I haven’t been to my bodywork doctor in about three months. It pops painfully most every day and aches so that my teeth hurt daily.

Fatigue:  Such a big struggle still – but since my IV I have been able to struggle through getting things done a little more during the day. Unexpected naps have been happening regularly though. Blink once and it’s an hour later.

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my only pic from my last IV! we did a push on everything which makes it SO much faster!

Fibromyalgia: Such a main point of pain. It’s a constant burning, tingling, throbbing in my limbs, as well as occasional cramping in my feet, calves and hands.  The overall aching has been keeping me up late at night, unable to get to sleep. I’m still on ice at least once each day, but it’s typically a pretty fair bit of swapping out ice packs. I’ve continued using the Tens Unit on my legs as well as using Mg lotion.

Weight Loss: YES! Little by little it’s happening

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Mood: This has stayed pretty good lately – although I do feel like some of that might be that I’m just not thinking about anything serious.

Digestion: I almost forgot to add this and it was SUCH a problem for over a month. My digestion was so bad that even water tasted awful. I finally figured out that my stomach was needing a rest from all of the supplements/vitamins that I’ve been taking for so long. I cut it down to five or six a day – instead of the… forty (probably more) a day I was taking. It took only a few days for it to start helping and now I’m slowly adding things back in. It’s nice to not be taking so many pills but I can tell that I definitely need more than what I’m currently on.

To read where I was at last year in this journey- click here – it’s also when my doctor first uttered the most beautiful three words she’s ever said to me.

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~Laura

Health Update Sept/Oct 2018

16 Oct

Well, folks, over a week ago I was thinking about the little improvements that have been happening and realized how nice it was to be able to see them! And then, if you saw my FB or IG posts, you know that last tuesday I crashed and burned harder than I have in months. OY, but isn’t that how it goes? It doesn’t take away (fully) from the improvements but it takes away some of the optimism. I do want to look at where I was at this time last year though to maybe get some of that optimism back…hopefully. So let’s get to it!

fightinglymemigraines

Overall Health:  Flaring severity has decreased. Brain fog has eased. Fibromyalgia has increased. I’m still exhausted and completely tired of fighting for my health. I’m READY to move on to the next thing in my life to focus on – like becoming a published author maybe?

After a blood test last month, we learned that : my LDL’s are high, my adiponectin is high (dr wrote ‘fat burn’ next to it =) ), Omega-3s are low and that I most likely have SIBO. My doctor has thought that before but with the results of this test, we’ve decided to work on treating it.

I’ve started Resveratrol (2/day),  Bearberry (1/day), increased Iberogast to 14 drops/day.

Aug  16. Started DIM Detox, 1/day today only? Feel pretty good, tired. Napped. Worked on book! Low migraine late am. Fibropain shoulders down, minimal in wrists and hands. 
Aug 17- bodywork appt am. Migraine and fibromyalgia flared pretty badly in evening
Aug 20- energy in am, minimal pain until early afternoon. Migraine and fibromyalgia flared pretty bad in evening, as has been usual.
Aug 24- fatigue has eased and flaring in the evening has calmed down as well. Still some brain fog, fibromyalgia in joints/just all around aching that’s pretty painful and distracting. increased Iberogast to 14 drops/day last week. Am increasing liver, seeing if it helps with fatigue. 
THESE  above are ALL Sept dates!!!
Sept 28- migraine flared in evening with fibro                                                                             Oct 1- Increased Noni Fruit 3/day                                                                                                  Oct 2nd- decent fatigue all day went errand running and to the dog park. Fatigue kicked up late afternoon along with migraine. Fibro flaring later evening, especially in right hand. Day 17
Oct 4- fibro flaring last few days. Migraine  kicking up off and on all day. Back pain is pretty constant for a few weeks now. started resveratrol 1/day
Oct 5&6 upset stomach all day. Fatigue but still able to get up and do things. Brain fog gone
Oct 9 vision loss in am, avoided severe migraine. Slept most of the day, fatigue/recovery from the morning. Awful

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Migraine: These have been both marginally better, and much worse. — While I have had a slight decrease in severity some days, I also had a visual aura this past week so I feel like it evens out in the end.

Sleep: my doctor had me start taking 5Htp to help with my sleep (among other things) and it did help – a lot – I was waking less during the night, sleeping longer and feeling a wee bit more rested. The problem was that it was causing nightmares and messing up my stomach a lot. I have since gone off of it because the stomach stuff was just too rough. So, I’m back to seven hours tops of sleep with multiple wakings. With frequently needing an ice pack or heating pad.

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Memory/Brain fog: The answer is the same as last month – Neuroflam. It is a lifesaver. Not that I’m clear of either memory problems or brain fog but they aren’t so …debilitating now.

Vision: As I said, I had one vision loss this week, although it didn’t progress fully it was the worst I’ve had since June/July. I was able to halt the full nuclear migraine that follows though.

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Getting some editing done

TMJ: While it still isn’t popping too much, I would say this has increased lately because it aches SO OFTEN and my teeth just hurt frequently.

Fatigue: This has either been calm enough that I’ve been able to do minimal things (light cleaning, dog park, slow walks,etc) off and on thru the day or it has just hit me hard that I’ve been stuck on the couch for days on end.

Fibromyalgia: Once again, the biggest pain the past month. Well, along with the fatigue. There’s just a constant burning, tingling, throbbing in my limbs anymore, as well as occasional cramping. The cramping had disappeared for a few weeks but now it’s back occasionally. The overall aching has been keeping me up later at night, unable to relax enough to get to sleep. I’m still on ice at least once each day, but it’s typically a pretty fair bit of swapping out ice packs. I have been using the Tens Unit on my legs this past week and it helps so much! I don’t know why I didn’t think of it before.

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Weight Loss: YES! It’s not much but I’m pleased with any.

Mood: Thankfully this has evened out again!

~Laura

Health Update: May/June/July 2018

31 Jul

I am going to admit something to you right away – I’m starting this but have no idea when it’ll get finished and posted! With my OH’s graduation and party on Sunday, my parents coming into town today and donation boxes/a dog park run to do before they get here, I’m just not sure how much of this I’ll actually get written today. But, “Well begun is half done”.

**Update: It’s now July 30th and I am just now getting back to this post! The party has been thrown (along with a second one beginning of this month) the parents have come and gone, along with another couple of guests, many dog park runs have occurred and I’m woefully behind on so much that I’ve intended to do. But, this is step one in getting back on track!

fightinglymemigraines

 

Overall Health: I have been a bit better this month. Fatigue has still been a major problem. My back seized up early one morning and it took almost two weeks before it stopped hurting. I’ve seen some improvement in my every-few-weeks flaring, which has been such a relief.

May 14 saw bodywork Dr. Worked on whole left side. 
May 15 saw main Dr. Going to start neuroflam. Also went major grocery shopping today. Was worn out in afternoon, dehydrated, some brain fog. Took detox bath in evening, wiped me out.
May 16- woke up with severe fatigue. Slept again until noon. Joints achy and a 7 migraine. Fatigue isn’t so severe this afternoon.
May 18- a better day. Was able to do some light cleaning, cooking, etc. Migraine didn’t hit till later afternoon and then harder in evening. First evening in at least a week that my hip hasn’t hurt and my calf hurts half as bad.  Fatigue isn’t near as bad but still underlying.
May 20- monthly started. Hungrier than normal. Not much fatigue. Went to the beach for the morning. Severe migraine early afternoon partly from lack of food. Some cramping/tingling in feet, calves and hands
May 23- took Abby to the park, went to get my hair cut and to two stores.. Worn out and a migraine trying to come in evening. Hip didn’t hurt though! 
May 24- woke up early with bad migraine and very hungry. Had a snack and slept again. Migraine was still bad when I woke up, but early afternoon it has eased some. Strong fatigue today. 
May 25- woke up feeling better enough that I drove to Eugene in the afternoon. Hit with 8 migraine in the evening, and Soo hungry but ice, clonidine and food kept it from increasing. Took a short nap around 8pm. 
May 30 – fibropain flaring all week. In hands especially tonight, maybe because I worked in yard this am. Migraine flaring up to an 8 but then stopping. Fatigue hit hard yesterday, easing off today. 
–have been ‘seeing’ things in the corner of my eye. A bit of heart pounding. Fingers hurting/have to focus to straighten all the way. 
June 3- severe migraine out of the blue in evening. Vision gone in left eye.  Debilitating. Day 15. 
June 4- recovery day and keeping the pain down. 
June 5 – fighting migraine down. Hit hard in evening. To a level 9. IV today, glutathione push.
June 6- pretty good today. Upset stomach in late am and late evening. Clonidine keeping migraine down. Some fibropain. 
June 11-fatigue hit hard all day. Migraine tried to flare throughout the day. Took 2 naps. June 13- decent fatigue but was able to get up and putter around the house as well. Took a long nap. detox bath in the evening.

Have been struggling with bad fatigue for a week and a half. One vision loss migraine. 
June 26th iron and nutrient IV. 
June 29- best I’ve felt in a long while. Energy, mental clarity, 
July 1- day 15, fatigue and some mood issues. Needed a nap in the afternoon. Fibropain pretty strong in joints in late evening. But such an improvement from this time last month
July 19- back feeling a little better in am. Took Abby to the park. Afternoon, fatigue hit hard. Fibro flared in evening. Slept on ice pack all night
July 20- back still hurting (a week and a half now) mainly on left side. Possible kidney moved down again?

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* I’ve been on the DIM Detox  since the end of May and I have slowly but steadily seen an improvement in my mid-month flaring like we were hoping! I did have to cut back to 1/day after increasing to 2/day and having a flare but it’s helping!!!

Migraine: These have slowly decreased from May to end of July. I haven’t had a ‘nuclear migraine’ (aka, vision loss/debilitating) since beginning of June. They are still daily, of course – finish?

Sleep: This hasn’t changed much other than, with the fatigue, I’m needing more naps. Not every day, thankfully, but a lot of times when I do nap, it’s a few hours before I wake up. Which then makes it hard to get to bed before midnight… I am glad that I still don’t need melatonin to get to sleep like I did for so long!

Memory/Brain Fog:  This was a big enough of a struggle that I started taking Neuroflam  (thankfully I can get it for about $30 cheaper than this amazon price). To experiment, I have been off of it for a few weeks…and I think it really was helping. OY. I was hoping to save that money but anything that helps with mental clarity is worth it. I’ve been so foggy that sitting down and writing (either on here or on my book) has been such a trial that I just haven’t done it. Sadly.

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It took at least half an hour to get the needle in to a good vein this time. Second try with the Iron push. Verdict? Doesn’t kick the fatigue.

Vision: Since the beginning of June, I haven’t had full vision loss but I have had some minor sparkles, spots or blurriness. I have been able to attribute them to exhaustion or hunger. When they have been tied to the oncoming of a severe migraine, I’ve been able to halt it from fully forming.

Fibromyalgia: Ahhh, joint aches. Self-cramping. Sporadic tingling. Pain that is trying to claw its way out of my body.  This has increased over the months and I’m thinking that it’s due to the fact that I’ve been having cane sugar occasionally. As well as starch. I am okay with never feeling the need to move just because the pain is so bad.

TMJ: This is one thing that has eased off and stayed down, mostly. My teeth will still ache and my jaw is almost always tender to the touch. It doesn’t pop too often.

Fatigue: This has been a doozy for a while now. My last two IV’s, we’ve gone without the glutathione and done Iron and nutrients but it’s not kicking the fatigue like the glutathione. OY.

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Weight Loss: I was doing good on this for about a month and then…I stopped working out and more lax on what I would eat. I’ve started working out again though so I’m hopeful I can start losing some again!

Mood: Overall, this has been good- even- calm. A few times a month (?) it goes more wacky than it normally would.

Bladder: since May, I haven’t had any other …strange behaviors in this quarter.

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I follow Aubrey on Instagram and just had to share this bit of humor.

If you want more frequent updates on my health journey – as well as Abby adventures, crochet projects and whatnot – follow me on Instagram!

*Disclaimer: I will say though, that I tend to share more…. real-life photos there than I do here. I only share a portion of them here on SGL. I have gotten some comments on my ‘death/zombie’ photos and such – if you don’t want to see pictures of someone in chronic, debilitating pain, I suggest you don’t follow me on IG. or Facebook, heh. I know it can be hard to see and read about, but this is my life and the life that so very many people are living. We didn’t ask for this. If you don’t like it, and there’s nothing wrong with that, please don’t make critical comments about our hard days – even if you mean them in jest. They still wound us. I appreciate each one of you that follows my blog, IG or Facebook. 

I caught Abby being a goof the other morning, here it is, just to make you smile,

Health Update April/May 2018

8 May

Once again, I am so glad I do these updates! It helps so much in keeping track of where I’ve been – and where I am. While I have been frustrated lately on just how expensive all my treatment is – how come insurance just won’t cover lyme treatments?! – I have to admit that it is all worth it. Out of curiosity, I brought up last year’s update  and the difference is striking. I don’t take melatonin or theanine to sleep anymore – ever! While my fibromyalgia is still painful, I can crochet pretty much as long as I want and it doesn’t get to the point of making me cry/scream. I no longer have disassociation. I am able to keep up with housework better overall. The things that I started taking/increased are all some of my favorites now – St. John’s Wort, Butterbur/Petadolex, iron supplement, etc. I have decreased the ceanothus to once a week though because I react to it so strongly.

 

fightinglymemigraines

Overall Health:  It’s a bit tricky to know how to summarize… The fatigue, fibro and migraines just seemed to hit and not want to ease for several weeks. Going to IV and bodywork didn’t help as much as they normally do. But the last few (?) weeks, I have noticed a bit of an improvement. Often, I see it in individual days rather than an increase over several days…

Mar 22- fatigue and migraine today. Crashing in evening with fibropain and migraine. Two or three clonidine. 
Seem to flare on days 15 and 22
Mar 24 – fuzzy brain and fatigue. Migraine hard to calm down throughout the day. 
April 4th – IV (push, not drip) yesterday. Woke up with a headache. Took 2 clonidine during the day to keep it down from a bad migraine. Felt pretty good otherwise. Had energy and ability to focus. Left calf tensed up quite a bit this evening – migraine flaring
April 5th – severe fatigue today. Migraine off and on. Hard time focusing. Left calf tight and foot tingling late evening. Three clonidine today
April 8th- a little fuzzy brained all weekend. Fatigue too. Some cramping. 
April 9- took one drop clonidine am. Mega fatigue hit late morning. Bad migraine early afternoon and most of rest of day. Started SAT.
April 13- increased SAT to 2/day. Some fatigue and migraine
April 16- bodywork Dr. 
April 17- calves cramping. Some fatigue. Nightmares
April 18- foggy brain and fatigue. Calves still cramping. Increased SAT to 3/day
Have mostly forgotten to take daily liver the past week. Haven’t noticed any difference? Fatigue has eased although it is still present. Brain fog is the same. Was busier this past week odd than have been in a while and have not CRASHED like I thought I would. Sensitive to smells and loud noises.
April 23rd- started Mineral complex again. Migraine off and on all day. Energy even though I’ve been tired and took two naps. Was a productive day.
April 24- was tired but not overwhelming. Took one nap, maybe two. Fibropain flaring in late evening, hip hurting too, going to bed a little early, hoping to sleep it away
April 26- fatigue hit today, even more so in the evening. Was hard to even eat dinner. Taking iron supplement didn’t help, like it normally does. Was also hungrier than normal. Front of neck has hurt a lot the past few days. Increase Mineral Complex to 2/day
April 28 – woke up feeling pretty good, fatigue eased. Front of neck still hurt but eased as day progressed. Took Abby to the park with start of migraine but eased by evening. Went to movie, took 3 clonidine before and during. Didn’t crash like I expected to afterward. 
April 29- woke up feeling even better today, still with some fatigue. No clonidine so far. April 30 – increase Complete Mineral Complex to 3/day.                                                           May 4th – start Molybdenum

Migraines: While I haven’t had any level 10’s (and just a few times of a hint of my vision going), these have been bad. And have often not responded to anything I do to get them down. And then other days, one clonidine is all I need. Very back and forth.

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Sleep: I am able to sleep longer than normal – up to 8 hours some nights! It’s been so nice. But. I have been waking up more often to use the bathroom.

Memory/Brain Fog: this has increased, frustratingly. Quite often, I won’t realize how bad it is until I leave the house.

Vision: Like I mentioned above, I had a few times of vision loss. But it was very minimal – the sparklers in my left eye that is the precursor to it, and then nothing else.

Fibromyalgia: This is just bad enough to be obnoxious but not debilitating. My left calf is always tense/hurting. My joints ache frequently and have had some random stabbing pain in my palms or base of feet.

TMJ: The front of my neck has HURT so much these past weeks. Even going to the bodywork doctor didn’t help it like it normally does. My jaw isn’t popping quite as much but my teeth still ache frequently.

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Fatigue: This has eased….most days, thank goodness. I do think the H2PLX has helped a lot. I tried going off my iron supplement and while I didn’t think at first there was any difference, there was. (it got to the point that I’d fall asleep mid-project…or almost fall asleep in the checkout line at the grocery store.) I now am taking it most every day again.

Weight Loss: I have been able to lose a tiny bit!

Mood: This has calmed back down again and I am so very thankful for that.

Bladder: Ahhhh, this one. This one has me a bit baffled. All of a sudden last week, I was needing to use the bathroom about every 10 minutes. And I’d wake up about 5 times a night. GAH. I don’t know why either. Thankfully it’s calmed down but it’s still more…active than it should be.

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~ Check out It’s the Lyme Life – may 2017 and Encouragement for living with Chronic Illness (the start of a 4- part series) for more!

 

 

Health Update Jan/Feb 2018

21 Feb

If you follow me on Instagram, you know a little bit of what this update is going to say since I shared some of this last week. I’ll admit that I kept putting off writing this post. I’ve found it hard to want to share – which feels a little strange but there’s something scary about saying “I’m feeling some better!” I feel the weight of expectation landing squarely on my shoulders. Expectation that I won’t have any more set backs. Expectation that I’ll soon be back to full health. Expectation…expectation… Perhaps it’s just all in my mind, but they have held me back. So, I’m facing them and finally writing this post because I NEED to. I need to document this. fightinglymemigraines

 

Overall Health: One word: improvement. Do you know how scary that word is to type?  I’m noticing I’m able to do things that I wouldn’t have months ago. Fatigue is still a big struggle. Focusing on one task has been tricky.

 

January 16-23 – all symptoms started easing. Needing naps occasionally- cut back on dosage of dmsa which helped with fatigue a lot. Only mild flaring in evenings now, including the restless fibropain. Still struggles with mood after increasing xcht to 3/day. Started h2plx on the 20th. Am avoiding fruit in the am, since the 20th to see if I have any changes in how I feel. Increased B2 to 2/day on the 23rd.
25th – woke up tired and decent fatigue but wasn’t couch bound. Migraine didn’t kick in till around 130pm. 
1-26 felt good today. Did a bunch of cleaning and took Abby to the park. One? Two? Clonidine. Increased horse chestnut to 2/day till day 28.
1-27 upset stomach all day but felt good despite that, took one clonidine late afternoon. Took Abby to the park. Quick grocery store trip ( used a basket instead of a cart!), Worked on book. 
1-28 feel good but so tired- couldn’t nap so took Abby on a walk.  
1-29 felt good again, took Abby to the park. Migraine in afternoon, mostly kept down with clonidine. Some minor brain fog. Increased h2plx to 2/day
1-30 IV. Cycle started. Fatigue but still feel decent. Took Abby on a walk in am. 
2-7 been feeling pretty well the past week. Been able to do quite a bit. Think I overdid it today though – with a lack of veggies, causing some cramping and my left calf is very tight. Brain fog has been increasing. Not feeling able to handle decisions/lots of stuff going on around me. This is my last week of chelation!! 
2-9 fatigue has followed me all week – thanks in part to the chelation. Hip has been hurting the last two nights. Some minor fibropain in my left hand and left calf. Still avoiding fruit in the am as I’ve noticed that I am not as hungry throughout the day. Have even not been hungry for some meals this past few weeks.
2-15 have been doing well this past week. A bit of migraine and fibromyalgia flare up, but it wasn’t bad. Sleeping better and sometimes longer.  Energy. More mental clarity. Hip has been hurting lately. Jaw pops/hurts a lot

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Migraines: These have decreased – yay! There have been a few days that I haven’t taken any clonidine – and several where I just needed one.

Sleep: This has stayed the same – with maybe some slight improvement? –  where I’m getting 7 hours a night (almost to the minute). I wake up about 2 times a night. I’m not needing as many naps during the day – but often even when I do, I can’t fall asleep.

Memory/Disassociation: I’m starting to think I can take the disassociation aspect off of this list! Memory has improved slightly (?)

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“and then, one day, you see a spark of your old self again.”

Vision: No visual auras at all this month. My eyes have been more blurry than normal when I’m tired lately.

Fibromyalgia: I can’t believe how much this has eased. My left calf still is tense most days. I’ve been able to crochet/ write just about as much as I want. When it does increase, it’s more in my joints – wrists, elbows, knees and ankles.

TMJ: It’s been popping a lot along with my teeth aching the past few weeks. I’ve had to push out my bodywork appointment almost two weeks and I am sure that’s a big part of this.

Fatigue: This eased dramatically once I cut back (and then finished) my chelation dosage. It’s still strong though, to where it is the main symptom I have day to day.

Weight Loss: I’ve lost almost all that I had gained in Nov/Dec. I have been able to get out and walk Abby a lot more these past few weeks.

Mood: Yay for mood consistency again!

Bladder: This has eased a bit I think. It’s at least to the point of my normal (which still isn’t where it needs to be)

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All in all, I can’t quite believe the progress I’ve seen this past month. I’m finding myself saying ‘ I couldn’t have done ________ a few months ago’, quite a bit! I am still, of course, ill – fatigue holds me back daily, mental clarity is still something I lack often, etc. I just read through January 2017‘s update and can’t believe how far I’ve come in a year.

 

~Laura

Health Update Nov/Dec 2017

19 Dec

 

fightinglymemigraines

 

Overall Health: Fibromyalgia flared, causing more tears than normal. I had partial vision loss two times. Fatigue didn’t ease much after the IV. I’ve struggled with keeping an even mood the past few weeks. I have started DMSA (chelation) to get the high levels of lead out of me.

11-15 went to Dr Vogel. Stretched back/hip/neck, worked on jaw too. Started xcht again, 1/day
11-16 started fibronol 1/day
11/19 increased fibronol to 2/day
11-22 nauseous, migraine starting am. Traveling to bend
11-23 bad fatigue and brain fog. Needed nap early afternoon. Fibropain flared. Minor pain for day 15
11-25 bad migraine late am, up to an 8 that wouldn’t go down for a few hours. Fatigue. 
11-27 tired but feel pretty good. Energy. Jaw hurts. Fibropain flared a bit last evening. 
11-28 IV with amino acids. Fatigue. Brain fog. migraine flared in afternoon and evening. Fibropain flared late evening
11-29 fatigue. Nap in early afternoon. Some sparkles in vision. Migraine
12-3 flared in evening. Fibropain especially bad in left calf and ankle. Fluttering pain in feet. Restless pain. Migraine trying to come. Day 25 also, full moon 🌕
–mood a bit funky all week
12-12 severe cramp in right calf early am. Tight and sore all day and the next. 
12-15 anxiety before/during running errands
12-16 traveled in afternoon, movie in evening. half vision loss in left eye for about half an hr. Severe migraine hit, was able to SLEEP it off though. 
12-17 woke up feeling pretty good. Fatigue. Only some brain fog. Exhausted by afternoon. Some mood…issues in evening

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Getting the needle in was – again – painful! ugh.

Migraines:  While I’ve had a few level 10 ones, I’ve also had quite a few days where I didn’t need ANY clonidine (pain pills). SO possibly, some improvement?

Sleep:  Most nights, I’m sleeping about 7 hours (with an average of 2 wake-ups) each night, without any melatonin or theanine. I am still getting the strange/weird/scary dreams but they aren’t quite as strange/weird/scary without the sleep aids.

Memory/Disassociation:  I had anxiety running errands last week. I haven’t noticed any changes in my memory. No disassociation.

Vision: This happened twice this month, but I don’t get as stressed when it comes on, as I used to. A big part of this is, it doesn’t always mean that I’m going to be ‘dying’, like it used to. As long as I eat, take everything I can for it and lay down somewhere, I can normally avoid the extreme migraine.

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Abby made it on a friends’ instagram! SO adorable. 

Fibromyalgia: This has settled in my elbows and still flares in my pinky and ring fingers sending tingles up my arm. I am able to hold things (crochet, phone, steering wheel, etc) for longer periods of time without it cramping. Had a severe cramp in my calf (like I hadn’t had in months) that took a few days to recover from. Both calves are tight/hurt/mini cramping majority of the time. Feet hurt/shooting pains if I don’t get them up soon enough. Frequent achy/restless in the evenings.

TMJ: While it doesn’t pop all the time, this is a constant pain now. The front of my neck has started hurting frequently as well. My teeth ache and often I can feel the nerves pulsing from my jaw up to my temples. Ouch. I have started going to my bodywork doctor (once a month) again and am hoping to really start seeing improvement in my jaw!

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This is what exhaustion and pain look like. Don’t be deceived by how someone looks – so much pain can be hid with a smile.

Fatigue: Once again, this was a major problem for me. I’m thinking a big reason for it, was that we did amino acids push at the end of my IV last time, instead of the poly mba (or is it mva?)

Weight Loss: I have lost about a pound for sure. I didn’t weigh from mid October to mid December. But I am going to get more focused on this again – including being strict with my diet and trying to move more (even if that is just getting Abby on some more walks!)

Mood: This had stayed better until the past few weeks. I’m sure it’s connected to the fact that I ran out of Xiao Chai Hu Tang and am now only taking half my normal dose.

Bladder: This has, again, been a struggle this month.  Frequent trips – suddenly urgent trips. ugh.

~Laura

How have you been feeling this month? 

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Health Update Sept/Oct 2017

12 Oct

Whew, finally getting this written! I’m gonna give myself a little plug here before I get started.

If you want more consistent updates on how I’m doing, follow me over on Instagram! I’m on there regularly, sharing how I’m doing with dosage increases, doctor visits and whatever else hits me as I fight to get better! (plus, there’s super cute puppy pictures too)

fightinglymemigraines

Overall Health: While fatigue has been less INTENSE, it is still very present, making it one of my main struggles of the month. Dealing with reaction to Iberogast. Not getting good/enough sleep. Bladder issues.

9-12 IV today. Brain fog but ‘compelled to DO’ today. Drove down to Bend on my own! Days away from cycle
9-14 fatigue day. Migraine kicked up. Bit of brain fog. 
9-15 worse fatigue today. Level 9 migraine in evening. 
9-19 upped Iberogast to 2 drops/day. Felt bad in afternoon and awful in evening. Migraine. Jaw. Achy. Etc. 
9-20 same reaction this aft at yest. But not quite as intense perhaps? 
9-22 putting Iberogast in warm water rather than hot tea. Seeing if this helps my reaction/detox to it. Yesterday’s fatigue was intense. Back hurt in evening
9-27 aft. sparkly vision. Severe migraine and fatigue rest of day
9-28 migraine and fatigue hit in afternoon
10-1 fatigue lingered today, able to get out though. Napped in afternoon. Migraine kept down with 2 clonidine. Upped Iberogast to 4drops/day in evening
10-3 IV today. Added poly mba at the end, along with glutathione. 
10-4 woke up achy and tired but had a burst of energy rest of morning. Migraine kicking in early afternoon. Severe migraine and bad fibromyalgia in evening. Rough night.
10-5 woke up rough and weak. 
10-6 woke up pretty good. Tired but ended up with a lot of energy most of the day, despite brain fog. Migraine and fibropain kicking in mid evening. Can’t seem to stop it. 

10-9 upped Iberogast to 5 drops/day
10-10 fatigue and just feeling overall awful this am. Want to get things done but just can’t…. So tired. Woke up with migraine. After a few hrs was able to get up and DO. migraine flared off and on all day. Only flared a bit in evening.

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Migraines: I have done better keeping track of these on my migraine app. Still a little wonky so I can’t use all of the feedback from it but here are a few. These have been averaging at a level 9. Aura and Prodrome are : headache, muscle stiffness and tingling in head. Triggers seem to be: body aches, interrupted sleep and lack of sleep. Top 3 symptoms are neck pain, fatigue and jaw pain. They typically start in the temples, eyes, jaw and base of skull. Most days I can get the pain down to where I can function – and get things done.

~ an ice pack has been my go-to lately. laying on it, or having it on my forehead helps so much.

 

Sleep: This has been a big struggle for me. Falling and staying asleep is so hard. I always sleep with my heating pad under my neck.

Memory/Disassociation: At times I feel like my memory is getting better but I don’t think it is. (no joke intended there, hehe) I will say that I have’t dealt with disassociation this month. Over-stimulation, yes. Frequently.

Vision: This has only happened once this month. I am so relieved about this!

Fibromyalgia: It has reached drive-me-insane level a few times this month. Augh. My joints regularly hurt – especially my elbows. And that often spreads tingles to my pinkies and ring fingers. It is just about guaranteed to happen if I’m holding something (phone, book, crochet, steering wheel etc) for a long time. (this has improved a bit from last month!) Ice, advil and light massaging help. The self-cramping that my left calf does and the ripples of pain that shoot along the bottoms of my feet still happen. But my hands aren’t self-cramping as bad although I do have to stretch my fingers out often because they just HURT.

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~Pain and anxiety go hand in hand.~ The last few days I’ve felt a restlessness to be HEALTHY, to be WHOLE. To be past this struggle. I feel as if parts of me are dying, withering away under all of this stress, physically and emotionally. I’m impatient to move on with my life. But I remind myself that my main goal needs to be to keep my eyes on Him – the One who is my Refuge and Strength. No matter what earthly trial I am in, He alone is my Salvation, my Rock. As long as I keep my eyes on Him and ask that my will ever is aligned with His, I will have lived a good and full life.

TMJ – This has been popping/hurting a lot still and I’m thinking it’s because I haven’t been to the bodywork dr in months. My teeth ache quite frequently from the stress of me clenching/grinding them at night.

Fatigue: As I said above, this is one of my main complaints from this month. The deep-seated fatigue that just aches and drags me down. I still am compelled to get up and DO things but sometimes the two opposites are at war with each other. Some mornings I am stuck on the couch but then can get up in the afternoon. I want to make a distinction – before it would be so bad that it was hard for me to stay upright in a chair, and I mean, really hard.  Now though, while it is still difficult, I rarely am struggling to stay in it rather than feeling like a cartoon where the character just melts off the seat into a puddle. So, while the fatigue is still bad, it’s not where it used to be.

Weight Loss: I have come out even this month – losing and then gaining it back. I’m a little bit frustrated but I have been less strict on my diet, so….. (by that I mean that I’ve had starch here and there)

Mood: This has improved…sort of. My inward negativity goes in waves, but it’s better than it being constant. I’m sure that being able to get things done around the house helps with this.

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IV time again – Hallelujah! Lovely nutrients with gluithione at the end. We’re also going to try a bit of poly (can’t remember the full name right now) at the end as well to see how I do with it. Was able to have a good talk with the Dr about next possible steps, with some suggestions for tests before the end of the year. Brain fog and fatigue are hitting hard today.

Bladder: This is the other main struggle this month. I can’t get back to how my digestion/bladder were a few months ago. (is it really that long ago?) Even when I was cutting out ALL processed and starch. I am waking up typically 3 times a night to go to the bathroom, even when I don’t really need to.

~I wanted to do a quick update of my progress from this time last year. I’ll try to keep it short. I still struggle with many of these same symptoms as well as have added quite a few. (oh joy). But I have more energy overall. And we’ve figured out more of what’s going on with my body to combat it!

What I’m currently taking:

1 each day of  A, B complex, Calcium, Chaste Tree Berry

2 each day of Ashwagandha, B2, Berberine, Butterbur, D3, E, Feverfew, Fibronol, Magnesium, Xiao Chai Hu Tang, Noni Fruit

3 a day St. John’s Wort

1 drop Ceanothus one day a week. 5 drops a day Iberogast (slowly upping)

on Days 15-28, 1 Horse Chestnut Extract and 2 Chaste Tree Berry

Clonidine – prescription pain pills. Averaging 2 a day

Gelsimium, Pulsatilla, Belladonna, phosphorus and one more… – tincture in water that I take when I need relief

essential oils

~Several of these I need to increase, but I’m focusing solely on the Iberogast right now.

I know this was long this month but I wanted to get it all in!

How have you been this month? Do you have any questions for me about what I’m taking/doing? Ask away!

~Laura

Health Update : June 2017

14 Jul

Hello everyone!

I pulled up my migraine app to write the stats down, all the while thinking that I haven’t been keeping very good track lately when this confirmed it : 2 attacks the past month, my average attack duration is —wait for it…… 145 hours and 35 minutes. (coughcough) so I’m gonna skip this entire section of update because it’s all faulty.

fightinglymemigraines

Overall Health: the first three weeks of June were terrible. Straight up terrible. But! I also started getting nutrient IV’s and they seem to help so much. I feel like we are starting to figure some stuff out about this poor body. The last week-odd was so much better – all my symptoms calmed down SO much. Although disassociation is still a problem when I’m out and about.

Notes : 5-26 upped xcht to 2/day . Nauseous. Exhausted. Migraine kicks up then recedes on its own. Feeling a bit snippy and lonely today. Waiting to hear back from Dr about upping ceanothus or starting fibrobol.
5-28 starting fibronol, 1/day. Haven’t heard back from Dr, decided to just do it.
5-30 fibropain has been flaring for the past few days bad. Hard time getting it to ease. Trying the white Willow forte for it instead of Advil.
6-1 appt with Dr v today. Left side feels better now. Also started cycle early this am. Pretty miserable all day. Exhausted.  Migraine kicking my butt. Off of fibronol- was causing unexplained bruising.
6-2 first IV today
6-12 migraine not staying down today. Fibropain is starting to flare in late afternoon. Hard time focusing on anything for more than a few minutes. Really wanting to start the detox, hoping to get to the produce store tomorrow so I can. Migraine flared to a 10 in evening. Debilitating. Awful. Body was a heavy weight that I couldn’t move. Tears. Fell asleep around 8pm and slept off and on till the next am.
6-14 day two of recovery. Able to do dishes this morning but exhausted and achy now
6-16 still can’t get rid of this migraine and fatigue. It’s sticking around an 8. Evenings are still rough but seem to be getting easier as they go on. Nothing seems to ease the migraines much
6-20 2nd IV today:
Potassium
B complex (5, 6 a and 12 as well)
Vit C
Calcium
Magnesium
Saline
Fighting a cold as well. Been better this past week-ish. Fibropain has diminished -except for shoots of pain. Migraines responding to treatment better. Highest an 8. Fatigue still awful

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morning dose

*It wasn’t the fibronol that was causing unexplained bruising. I have since started back up on the fibronol because the bruising is still happening. I also realized that the Ceanothus was causing some serious herxing so I am going to start taking it only one drop a week.

Sleep: Still rotating Theanine and Melatonin in order to fall asleep. Having a hard time with falling – and staying – asleep again. Especially when the fibromyalgia kicks in.

Memory/Disassociation: Like I mentioned above, I’ve noticed that disassociation kicks in when I go out in public. I suppose I could be having it here at home too but just don’t realize it. hmmm. Anyway, memory might be improving a little.

Vision: I’ve started getting ‘floater’s in my vision a bit which my dr says can be a vitamin k issue (I think this is right, it goes along with some other problems I’ve been having)

Dizziness: Thankfully, this has stayed mostly calm – but not completely

Fibromyalgia: This seems to flare for a few weeks and then calm down. Right now I’m in the  it’s-coming-back-soon stage. It definitely reached higher intensities, especially during my level-10 migraines. Advil, heat and ice seem to be the only things that help.

Fatigue: this was consistently bad the first three weeks. It eased the last week odd but has since come back with a vengeance.

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Weight Loss : Since I cut processed sugar out and reduced any starches (beginning of May) I’ve lost a total of 5 lbs. I’m excited about this because it’s been steadily – slowly- dropping and any attempts before to lose weight didn’t work. As long as I stay strict like this, I think the weight will continue to drop. (it’s funny because it’s typically 0.8lbs a week.)

Mood: I’ve been good on this and yet not… The mood swings and major struggles haven’t come back but I’ve struggled with getting frustrated at the downward swing of my heath.

Bladder: I haven’t noticed any changes in this area

 

 

~ I am trying not to worry too much about the fact that I’ve started getting level-10 migraines again. Trying. Because, honestly, it’s freaking me out.

~ It would be wonderful if I could go in regular for acupuncture and bodywork. And I really want to try the infrared sauna as well as the sensory deprivation room (because, I just couldn’t do the ‘tank’ – hello claustrophobia). There are a few other treatments that I’ve looked into that I would like to try but due to money – and insurance not covering anything I need for Lyme treatment – I just can’t. It has been a big point of frustration for me this month.

 

~I am going to start looking into getting disability which completely overwhelms me just thinking about it. If anyone has any tips or suggestions, I’d absolutely love to hear them!

~Laura

I am on Instagram where I update/share how I am doing pretty regular if you want to check it out

 

Health Update – April 2017

28 Apr
 It’s been a very rough month, full of reasons that I have to move, even when I’m working with no spoons. Ugh. As important as I know doctor appointments are, I admit to wishing many times that I could just stay home on my couch.
I wrote a post on pain keeping you up at night a few weeks ago, go check it out! If you want to follow me on instagram –  I do regular updates on how I’m doing and share lots of happy puppy pictures.

Health Update – March 2017

29 Mar

 

What a month! Spring is starting to show up here and we are so very ready for it. I’m dreaming of a small container garden and getting the landlord here to spruce up this yard of ours (he’s also a landscaper.) This time last year I had roses on my bush, it’s definitely a delayed spring!

Well, on to the topic of fighting this Lyme disease.

fightinglymemigraines

Migraine app notes – I’ve had 7 attacks, lasting in average of 72 hours. So, while they’ve absolutely been lasting longer, I’ve had 6 attack-free days. Which I believe is a record! I’ve been getting an average of 7 hrs of sleep each night – this doesn’t typically account for the getting up a few times and tossing and turning. I’ve taken 38 Clonidine. They happen 80% of the time between 12pm and 12am (ha! so helpful,that). Average level is 7.9. Top three auras/prodrome are fatigue/achiness, headache and weakness. Top three triggers are neck pain, interrupted sleep and lack of sleep. Top three symptoms are jaw pain, neck pain and throbbing pain. Frequent start positions are the same as usual, temples, eyes, jaw and base of neck.

( Comparing to last month, I added one attack-free day and the pain increased slightly while the duration rocketed up.)

Overall Health/ Treatment: Some days I feel like I’m starting to do better – and then the little evil bugs laugh and do a stealth attack. I’ve had a few symptoms ease/disappear which is wonderful. I’m going to keep my notes from this month instead of re-typing them. =)

3/18 note  – started taking iron again today – at 5 ml 2x a day to get used to it. am continuing taking antibiotic (doxycycline) for another 2-4 weeks to see if it helps or not. started a probiotic ( sacro-b) what with taking the antibiotic longer.  went off of: garlic, ehb, epo. Finishing my bottle of Silver, then going off it too. dr suggested i start having bone broth. she also wants me to do a metal toxicity test, i’ll do it after i get back from bend next week. since we aren’t making any headway with what we’ve been trying, she wants to go a different track. Dr also wants me to start taking butterbur. need to start taking the xiao chai hu tang again.  –pain has been awful these past two weeks, plus i got sick and then started my cycle a few days after getting over the cold. migraines hit hard in evening and sometimes i wake up with them in am. have lost 1.6 lbs last two weeks.

3-24 – started back up on doxycycline on the 20th. As well as the sacro-b. Upped my iron to 15ml a day on the 22nd. Taking phosphorus 1-2x a day. Needing melatonin to sleep still. Pain is definitely worse in evenings. Still daily migraines, tmj and calf/feet tenseness and a bit of cramping. Migraine seems to ease a bit more quickly the past few days. Skin is clearing up again, hopeful it’s the antibiotics and it’ll stay clear. Able to focus again, have even been writing.

3-29- ceanothus – trying 3 drops am, 2 drops aft, 1 drop  eve to see if it helps with the evening migraine and fatigue. have gained back the weight I’d lost.

Migraines: They have increased in intensity without hitting 10 at all, I don’t think! that’s cause for celebration, folks. This past week-ish they seem to respond to treatments a bit better. The rest of the month, they were resistant to everything.

Digestion/TMJ: Once again, my digestion is off. Looking forward to stocking the house with healthy options and see if I can get it to calm down again. TMJ… I’ve been clenching/grinding so much lately that my teeth hurt most of the time. The jaw pain is normal now. Finally rescheduled my appointment with the ‘jaw doctor’ as I’ve labeled her, since I had to cancel my last  appt when I was sick. (anyone else find that statement ironic, ‘when I was sick’?)

Sleep: I’ve been needing Theanine or Melatonin to get to – and stay – asleep. It’s frustrating since I was able to get off of it for a while. BUT! The night sweats have gone away.

Memory/Brain Fog: Brain fuzziness (a step down from fog??) reappeared while I was in Bend. Over-stimulation perhaps? It was strongest on my birthday, sadly. Gives one the sense of not being present. I’m hoping this eases soon.

Vision: My eyes still frequently get blurry, or just take a bit longer to focus than they should. It hasn’t progressed though.

Feet/Leg cramps: The cramps are random and maybe once a week now. Typically it’s just tenseness – which can be distracting and painful on their own. Sometimes soaking them in epsom salt helps.

Dizziness: This got worse recently, but I haven’t been watching my salt intake.

Joint Pain: This has mostly shifted to my knees/ankles. I’m so thankful that it has left my fingers – that was the worst for me.

Fatigue: This is still a struggle. Like I said above, I’m gonna try taking 1 drop of Ceanothus  to see if it helps.

~I have started following some fellow lyme disease sufferers/warriors on Instagram and in talking with one of them the other day, I learned that ‘they’ have recently learned that you can get Lyme, not just from ticks, but from other nasties like mosquitos, fleas and spiders. SPIDERS, people. I’ve been thinking back on my symptoms lately and kept getting stuck on the timeline of when I was in Culinary school and got a rather awful spider bite on my cheekbone. It swelled up so bad that it impaired my vision. Now, I grew up in an older house and got bit all the time so I didn’t think anything of it. But now…. It doesn’t really help much, other than to mentally be able to put more of a year on it. By then, I’d had migraines for a few years but after that… everything started to crash. Literally.

That’s all for today folks, I’m gonna rest and then – hopefully – get out to go grocery shopping!

Happy Wednesday,

Laura

 

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