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Improvements during menstruation?

pattismith

Senior Member
Messages
3,931
Anyone else experience this?
It started to happen last summer while I was taking high dose vitamin D, closest to remission id get was during my menstruation.
From what I know this is opposite to most Lyme peoples (and ME too) complaints, who get worse during menstruation.
I have this pattern of having some things opposite (like more fatigue if i dont stay active in "forced" aka pacing limits. But still even if i dont feel like it, dont feel to move, i have to do it because then I crash if i dont ).
I actually also feel better after activity unless it is severely overdone.
also feel better with alcohol

But back to menstruation, progesterone drops?! What else could cause this...
:-/


Currently i am trying to recover from years of antibiotics that even though helped some lyme symptoms, severely messed up my gut I guess and worsened my ME.

I was mostly mild ME case but with severe circadian sleep problems and cognitive (not only part of CCC definition, like i had motoric/psychomotoric problems like apraxia).
So sleep and brain things made me unable to function, not PEM, i never had mental PEM until this year.


I take mostly antivirals now, they did not help in the past when i tried, but now help,because i stated to have daily mental PEM! Which antivirals stopped.Thank God i figured it's viral.
Currently i am closest to my pre-abx level, still not there.
My head hurts like balloon and feel like deep in brain is explosion or something growing. :-/
So i guess antibiotics made my viruses reactivate.First time ever I have soar throat..

During menstruation, both progesterone, oestrogens and testosterone drop, so it's difficult to say which drop benefits to you.

Do you have head pressure? you may have a look in this thread:
 

pibee

Senior Member
Messages
304
Do you have head pressure? you may have a look in this thread:

Yes. Nonstop - 247- headpressure
I never had a headache in my life before treating Lyme.
What is spooky is that areas of my brain that hurt are the ones that dont work
Example, when i have pain on top of my head bilateral... Approx in motor and premotor area - i have motor problems (apraxia), when i have in frontal lobe, i got problma with processing etc

Before i had all these sympoms but never pain. Now just symptoms match pain locations.



Link is not working btw


EDIT:
Ow, i assume your link was about intracranial hypertension.
Yes i consider this very likely
Especially because it got worse with doxycycline.

But it is triggered during herxes. I got many other symptoms with herx, that went away eventually, but headache is very stubborn. Started w pressure but than transformed to headache + pressure.
Neurologist didnt even bother to keep me in hospital , one of those who dont know what ME stands for.

Seems i have this
https://en.wikipedia.org/wiki/New_daily_persistent_headache
 
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pattismith

Senior Member
Messages
3,931
EDIT:
Ow, i assume your link was about intracranial hypertension.
Yes i consider this very likely
Especially because it got worse with doxycycline.

I believe I have intracranial hypertension, for me it was worsened by Doxy, by Macrolides and by Metronidazole. It has nothing to do with Heirx, it's a side effect of these antibiotics.
You should receive a treatment for it.

Lyme and EBV (mononucleosis) are known triggers for this condition:

http://ihrfoundation.org/hypertension/info/C17/
 

pibee

Senior Member
Messages
304
I believe I have intracranial hypertension, for me it was worsened by Doxy, by Macrolides and by Metronidazole. It has nothing to do with Heirx, it's a side effect of these antibiotics.
You should receive a treatment for it.
For me it has everything to do with herx. I had lyme and bartonella [symptoms] for over 20 years and never had a headache.
When I started to treat it with antibiotics I had severe herx reaction which gave me about 100 new symptoms I never had even for a minute (like fibromyalgia, neuropathies.... electricity through spine).. And as mentioned head pressure.

Lyme and EBV (mononucleosis) are known triggers for this condition:

http://ihrfoundation.org/hypertension/info/C17/

I know. I was researching IH for a while, however I dont have neurologist who gives a fuck :( she just gave me Lyrica without even considering IH. And IH is so likely...
 
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pattismith

Senior Member
Messages
3,931
I know. I was researching IH for a while, however I dont have neurologist who gives a fuck :( she just gave me Lyrica without even considering IH. And IH is so likely...

I think you musn't give up with this possibility. You can also talk about it with your GP and try to get a prescription for Diamox, it's worth a trial and is not so risky. I took only small doses and it worked.

Do you have muscular symptoms?
 

pibee

Senior Member
Messages
304
@pattismith , Muscular like what?

Not much, not really.
Headache, cognitive problems and fatigue is "all" i have


I am guessing IV saline is a big no no if you have IH?
:-/
I take extra salt, should I avoid?
 
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pattismith

Senior Member
Messages
3,931
@pattismith , Muscular like what?

Not much, not really.
Headache, cognitive problems and fatigue is "all" i have


I am guessing IV saline is a big no no if you have IH?
:-/
I take extra salt, should I avoid?

Sorry I'm not a doctor pibee, I couldn't say if it may help.