Feel Worse Again in Afternoons

So many new symptoms are happening between Sjogrens and what test and doctor believe are Lyme (TBRF and Bartonella. Also, I'm feeling like Babesia, though it tested negative, may be playing a part.

In mornings, I wake up very dizzy and legs feel a but tight. They also fatigue easier but are still strong. Exercise makes me out of breath easier, even though oxygen saturation is very good at rest and while exercising (between 96 - 100 resting and never below 90 during exercise). It goes right back to high 90s or 100 after exercising.

Old symptom that has been back for a few weeks is a really bad, sick feeling between about 3:00 pm and 7:00 pm. Only difference is no fever this time around.

I feel the walls closing in between all this and have doubts I can ever find my way out. Sleeping is such a release. Dread the mornings.

My LLMD wants me to take LDN for the Sjogrens, and I've struggled with it in past. Also wants me to learn how to use this Spooky2 Generator X I've had for years and have never grasped using it. Wants me to also to begin taking herbs again that he wants me to order.

Finally, he has said if this doesn't work, stem cells would be last hope. I don't even know if I can get through the protocol he wants me on. Just so weary of years and years of trying and seeing only worse symptoms. No doubt, the Sjogrens neuropathy is really hard to deal with and makes me nervous.

Post Edited (running wild) : 6/27/2023 1:03:19 PM (GMT-8)

The LLMD has included herbs that also treat babesia, but I have to go very slow. There are two herb mixes he recommended that conflict with kidney issue. May be worth trying anyway because I have another aortic aneurysm that will need surgery in a year or two, but I couldn’t even recover from the first valve surgery when I was 85% better from Lyme in 2016.

Will ask about mepron with nephrologist. I used it years ago and staggered around for a week or two. Maybe I was taking too much.

It’s hard to figure what is causing what. Really good neurologists are very hard to find or get into see. Good ones are booked out 5-6 months.

Your suggestions and thoughts are appreciated and respected. You are always helpful. Thought the IVIG would help as I felt better first time I took it. Not doing much since, which makes no sense. That’s why I need a more knowledgeable neurologist.

Thanks, WBF. After I post whining about my situation, I wish I hadn’t. We’re all going through problems.

Work hard at trying to find the right way to feel better and then get frustrated. Always looking for answers.

Last hope will be stem cell therapy for inflammation. That s supposed to help with inflammation, which could benefit Lyme and autoimmune. There’s always that “could,” but status quo is not an option. And can’t even consider heart surgery as I am now.

running wild said...


My LLMD wants me to take LDN for the Sjogrens, and I've struggled with it in past. ....

.

sorry to hear you are struggling RW

do some reading up on LDN before starting it - too many doctors just prescribe it at whatever dose they guess is about right, or they typically use - or they get compounded, or they have read about from someone else - and people then report either no effect - or too many side effects and stop.

but its NOT as standard drug and that's the WRONG way to use it - i speak from experience

it helped me considerably - but i read up on the LDN research trust first - understood people with lyme and autoimmune disorders can react very strongly to it and have to start very low - way below typical doses - and increment slowly till you find a range where its having some effects - then increment extremely slowly
so that's what i had to do - i think i started on around 0.1mg ( no where near the 1.5-2mg that people often start on)

again - its not standard drug to be prescribed at a set dose and that's that - instead its doing very unusual things to the signalling that the brain uses to control parts of the immune system - and can be extremely powerful

i have some other posts on the topic - about how exactly to increment in tiny graduations - where to get it - how to mix it etc

good luck

emma blonde voyage said...
That's great your Babesia is in remission. How did you treat it? (I'm new to the forum and not sure if I'm using it correctly / is this how you reply to comments?)

hello and welcome

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running wild said...
Aerose - Thanks for the adrenal thought. Like adrenal fatigue? Not sure about circadian rythm, but I do have a definite morning, late afternoon, late evening pattern happening. I have believed it is part of the autonomic neuropathy.

I do take i gram of salt each day as my sodium levels have been pretty low. I don't eat a lot of salt to try and keep my blood pressure down.

Yes, adrenal fatigue as a part of this whole monster. Most of us have it to some degree, I seem to have had it worst than most. What Helen me the most was totally resetting my circadian rythems- I taped over all my clocks and went camping. Within 1 week I was falling asleep as soon as the sun went down and waking up an hr before sunrise. Also, the late afternoon crash and depression went away. I still to this day maie sire I get 30+ minutes of sunlight every morning ajd evening with hopefully another dose mid day. If it is too hot I need to take regular cold showers and keep my salt levels up to tolerate it, but that rythem has been the most beneficial thing for me so far.