Days/weeks incapacitated in bed

After a few months of fairly decent functionality (of course with typical ups and downs) my daughter Blakeley has crashed worse than ever in the 2 1/2 years we’ve been treating. Suddenly last Saturday night, she didn’t feel well and has been bed bound and not even looking alive for 12 days now. After a week I forced her to get up and walk some around the house. She doesn’t want to eat anything at all and I have to force liquids. Primarily it’s an overall sick feeling like she’s being run over, feels like she can’t move, but also has leg pain and severe head pain and in eyes.
We haven’t dealt with pain as a symptom too often but she said even if the pain was gone she still wouldn’t be able to get up.

Watching from the outside, it’s almost like she’s not even present. Her eyes are closed and moving like rem movements but she’s awake. How can she be worse after treating so long? I’ve thought through if it’s a herx or flare or toxin exposure etc. I don’t know honestly. Detoxing level has been the same. No new treatment. Although she had stopped parasite treatment for a month prior.
Just looking for any thoughts and how she can pull through this when we dont even know why this is happening or what set it off. I’ve had a lyme friend say maybe her body needs a break from treatment but it seems the symptoms mean she needs to treat. I just don’t know.

I have kids hanging on me as I type so forgive me if this is broken or doesn’t make sense.

Are you getting all the coninfections treated? Magnesium also helps with eye pain. Did you get her checked for dysautonomia?

im so heartbroken to hear this. you are such a good mama doing research for your daughter.
I agree concerning the adrenal factor. that sounds like a severe adrenal crash almost. if possible, can you have a hormone panel done? it’s a simple saliva test at home! they are very helpful for seeing which hormones are low and high.

I would gather she is also deficient completely in GABA, serotonin, dopamine and acetylcholine. my dr has me take this quiz here:

https://www.bravermantest.com/

and supplement accordingly. liposomal GABA has been a life changer for me as well as homeopathic serotonin.

praying for you and your daughter. my heart just hurts when I hear of young people like this.

Cant really add to the thoughts already provided, but am thinking if you and your daughter and hoping you find an answer soon on the situation.

As cliche’ as it is, there’s nothing worse than seeing your kids hurt.

Did you take anything that breaks biofilm?

@JaSon2233

JaSon2233 said...
This is my current state. Totally bedridden and almost catatonic. I am just gonna keep treating. Bart is so deep in all my tissues, brain, etc. Its an insane hellish game. Killing bartonella literally degenerates my body with all the deep tissue inflam. But I think i am past the point of no return. I burnt the boats and gotta win this battle.

Perhaps helpful, If i take the combination of tramadol and ativan, I can function at a higher level and experience some semblance of quality of life, albeit momentary. Not something that many people like to do often. I'm more scared of benzo withdrawal than tramadol, so i make sure not to keep increasing doses and don't do it every day. But when ur quality of life is so low and ur really in those dark layers of hell, I think you gotta lean hard on pharma, not the natural supplements.

This is very sad and all too familiar to my own experience. I have been in a catatonic-fog and bedridden before, too weak and in too much muscular and joint pain to lift a coffee mug (I had been a multi-sport athlete in a past life) and it's every bit as painful and heartbreaking as this, and to hear it now again, and know how others suffer...well it's good to be aware that this thing can put people deep in the woods for a long time...and it makes me angry when people lose patience, but then again I understand how patience is lost after "treatment-fatigue" and this dragging on--

I hear you about only some heavy pharmaceutical being powerful enough for those emergencies--I am trying to merely control or alleviate my symptoms, using very strong medicinal cannabis and alka-seltzer gold--which if I'm honest, if it weren't for those, I would be in darker places.

and I'm finding I'm hesitant to re-treat --with herb/ABX treatment right now---I feel myself slipping again, maybe I can ease into some light herbals/abx again like Cats Claw and Japanese Knotweed, but I had forgotten what herbs do exactly what again--Magnolia Bark extract, Skullcap, just restocked on bulk-powders of those again--had been taking Siberian Ginseng root powder more than the other herbs because it is more 'adaptogenic' (and I bought a lot of it at one time) than the scorched-earth antibiotic/antibacterial like I've experienced with die-offs from both herbal/pharm abx...

@Blakelysmom
I wish I had some more family-friendly and practical advice than this, but we all suffer... alone, or with family, or...

Anything to regain that spark of life, seeking novelty or maybe some activities/hobbies that were fun before??? say like light exercises, light obstacles training, light yoga and stretching, breathing, watching favorite shows, listening to favorite music

I would recommend electrolytes-replacement at the very least, would recommend Pedialyte or Drip-Drop, but I myself keep avoiding those because they contain sugar...

Alka-Seltzer gold may be a decent as a electrolyte-balancer...

warm soothing liquids, mild teas, and if your kid is not eating at all...maybe consider high-quality meal replacement--I use Orgain brand organic protein/superfoods to supplement my diet, as I can't always get to make/eat fresh nutritious foods (which are best for micronutrient nutrition...) anyway that's all I got for now.

Maybe phase in to a different routine to change things up, try some natural remedies, eat good foods and ease back on the heavier abx for a bit...could be treatment fatigue or just another painful low-point from Herxing. These bugs are stubborn, they put up a painful fight, what can I say...

She took antibiotics, diflucan, biocidin, malarial drugs (can’t remember name), etc the first year of treatment only to see no improvement and seemed more toxic and bed bound.
Second year began DesBios treatment for Borrelia, Babesia, Bart, EBV. Have gone through 4 whole series kits of BB and Bart. Also using Buhner herbs but can not tolerate even 1/10 dose, even trying to work up over a years time.
Has also done 6 months of herbal parasite cleanse.
This flare/herx came out of the blue and when we stopped everything to give a few days to detox in case of herx, it never got better. She only seems to have deteriorated over the past two weeks.
That said, we started last night back on very low dose of JK and some homeopathic drops for Bart and BB. Today is in much pain even when barely moving and just in sleep like state. It is just awful.

JaSon, I am sorry to hear you are in the same place. It feels hopeless at times but I love your attitude that you burned the boats so you have to win the battle. Keep the fight.

I appreciate the prayers more than you know. We are a family of strong faith in God and His purposes but this is challenging to say the least. Yeah, runningwild, seeing your kid suffer, especially on and on, is torture and I fight a mental battle every day to stay present and not just angry all the time with my other children. I’ll be the spoiled brat and say it’s just not fair! 😐 Not to Blakeley or my other children or any of you. And nothing changes...

We are currently in the process of that. It has been on the radar for some time but we are now following through. A Lyme friend of ours suggested the sudden crash could me exposure to mold...which we were at my parents house and I know they had a leaky water heater and just dealt with mold a couple months ago. It could be under their house though as they just replaced the wall they could see the mold on.
I do have to say, we live in an environment with high humidity, some days 80-90% this summer. Plus we had rain every day for a couple months...just been a super wet summer. Add that to living in a wooded space and it could be an issue.
Our house is on a concrete slab and we have steel framing and brick. I don’t know much about mold but our home humidity is currently around 50.

Would you recommend taking the dust samples mostly from her room or every room in the house? And if it comes back positive, what is the next step to know where it actually is as we have inspected visually the attic spaces and all living areas. The only place I would know of could be between the walls.

Thank you for guidance!

Also, is pain a symptom of mold? Last night she was dealing with instense pain upon moving any at all. We’ve never had that before. I need to begin a new thread about pain management.

Wow, I did not realize the impact of a virus. We’ve been sick before, of course, with so many people in the house. But your symptoms do mirror hers exactly.
Did you keep treating during the five months you were down? Did you adjust how you supported your body or what helped you most?

FOR IMMEDIATE HELP:

1. TUDCA
If you have a provider who sells CellCore, get their TUDCA Advanced (same as Microbe Formula’s discontinued TUDCA Plus). If not, get Microbe Formulas TUDCA Complete. If too expensive, get Nutricost TUDCA from Amazon.

2. Epsom Salt baths or sauna if she can tolerate either. Make sure water is not too hot. Make sure to keep her hydrated and electrolytes balanced.

3. Food
When I was very toxic, eating food made me feel better. I assumed that the food was helping to bind some of the toxins. This was my experience but I can’t say it will be the same for someone else. Avocado has fat. Fat could help. Brenda’s green smoothies are good.https://realfoodrebel.com/super-healthy-green-smoothie/. I used to add raw ginger to mine for an added kick.

4. Antihistamines
If she is not taking any, try breaking a Zyrtec in half. Take half in the morning and half at night.

5. Binders
Ex - activated charcoal, chlorella, GI Detox, modified citrus pectin

Re: the post-viral syndrome theory, I was pretty terrified. I ended up in the ER a few times (kidney pain, leg paralysis), and admitted to the hospital at one point (uncontrollable tachycardia). My muscular weakness led one ER doctor to diagnose me with post-viral myositis. The overstimulation and exertion of a two-minute shower (with my partner holding me up for support) sent me into convulsions. I was emaciated and needed assistance getting to the bathroom. I didn't see my dog or the downstairs of my house for months.

I treated my body as though I was having a cytokine storm, but I didn't realize until a few months into it that the immune-boosting herbs I was taking (echinacea and elderberry) might have been making that response worse, and switched to immune-modulating supplements instead. I started to notice an improvement when I started taking curcumin and quercetin (for MCAS, but they are immune system modulators). Around this time, I also had an infected root canal-treated tooth extracted, switched to a low-histamine diet, began treating POTS with more salt and proper (not over-) hydration, and started limbic system retraining (DNRS). I got acupuncture and craniosacral therapy regularly. I got very much better very quickly, once I started doing these things.

Here's what my various doctors recommended: My LLMD wanted me to take Cytoquel to, well, quell cytokines, as well as an adrenal glandular supplement (Dr. Wilson's Adrenal Rebuilder). He also recommended rebounding or recumbent exercise, and massage or craniosacral therapy, to keep lymphatic circulation going. My PCP wanted me to take transfer factor, particularly Researched Nutritionals PlasMyc because it contains antibodies to EBV, which she thought might have been reactivated. Both wanted me to take liposomal glutathione. My dysautonomia specialist wanted me to address POTS by wearing compression garments, eating two teaspoons of Himalayan salt per day, and drinking proper amounts of water. (Too much water throws off electrolyte balance, worsening dysautonomia, so proper hydration is roughly your weight in pounds divided by two, in ounces. More if you are sweating a lot. So since I weigh 108, I need about 54 ounces of liquid per day.) My neurologist recommended extensive neurological testing for the myositis, paralysis, and neuropathy.

I don't know if any of this is what's going on with Blakeley or what might help, but I thought I'd share just in case. Really wishing you both the best!