Improvements during menstruation?

[pibee]

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..


hm

 

[Seven7]

Well I used to get remissions on periods but as Ingotten better not as much but for years that was the case for me ( and virus infections like cold and I had zica twice)

 

[Diwi9]

@pibee - Wow, I have the exact opposite experience. All of my symptoms increase during my period. It is wonderful that you can at least count on a few days of reprieve every month!

I also feel better after a glass of wine and can handle some physical activity. Can someone figure this disease out already? We are all so different...

I'm hoping to start anti-virals in February, and I'm glad you've had some positive effects from them!

 

[pibee]

Improvements during period started last year, never before and my ME is worst ever this year

Antivirals reverse my recent progression when I was sliding to severe ME, but i took them only 2 weeks or so, took 24hr to stop that severe ME brain attacks
Will continue valacyclovir and see.

I am confused if I still have lyme, because biggest jump i had was on IV rocephin.
Well i am very complicated case, i have also PANDAS, and this year at 30 yrs old i got tics first time in life
Funny, thank god happened only few times
Last thing i need is to have tics too


I am thinkin maybe we have different estrogen to progesterone ratios so this changes during period , for me in a good way, and for you in bad

Dont know anything about hormones.
But i think i might be estrogen dominant based on what i read in the past
However, my periods are regular.
Vitamin D is also steroid hormone so when progesterone and eatrogen drop it is perhaps when it can work best by binding to VDR?!

 

[Diwi9]

Improvements during period started last year, never before and my ME is worst ever this year

Antivirals reverse my recent progression when I was sliding to severe ME, but i took them only 2 weeks or so, took 24hr to stop that severe ME brain attacks
Will continue valacyclovir and see.

I am confused if I still have lyme, because biggest jump i had was on IV rocephin.
Well i am very complicated case, i have also PANDAS, and this year at 30 yrs old i got tics first time in life
Funny, thank god happened only few times
Last thing i need is to have tics too

I just got tested for PANDAS, and was negative, except I came up "borderline" for Tubulin and CaM KII. I have markers for Lyme, especially Ehrlichia and Babesia. Other testing was negative. Then again, I also have elevated titers for Coxsackie B4 and Enterovirus 30 and truly suspect that I've suffered from encephalitis. Science really doesn't understand how some of these infections can cause long-term problems.

Because this thread is about improvements during menstruation, I should mention that prior to my relapse, I experienced very swollen/sore breasts during my period and even had a mammogram and ultrasound because of the severity. All they diagnosed was cystic breasts. I haven't had any swelling or soreness for the past few months during my period and mentioned to my CFS specialist. My specialist said it was likely because of my treatment for MCAS. Well, that's one improvement I'm thankful for!

 

[pibee]

What treatment for MCAS helps you?
I just started quercetin and felt better energy immediately but also maybe makes me a bit crazy, not sure, it overlaped with my period


Didnt get a chance to measure Pandas stuff but my symptoms are clear so i am absolutely sure i have it. Might be from bartonella/lyme
And this year because of gut problems streptoccocal overgrowth triggered tics

 

[Diwi9]

What treatment for MCAS helps you?
I just started quercetin and felt better energy immediately but also maybe makes me a bit crazy, not sure, it overlaped with my period


Didnt get a chance to measure Pandas stuff but my symptoms are clear so i am absolutely sure i have it. Might be from bartonella/lyme
And this year because of gut problems streptoccocal overgrowth triggered tics

Streptococcal is a definite precursor for PANDAS. My CFS specialist mentioned that many ME/CFS patients are autoantibody positive for dopamine (I think it was D2), tubulin, and CaM KII. With your history of neuro issues and onset of tics...I see why you suspect PANDAS. The Cunningham Panel from Moleculera Labs is about $1400.

Lyme, and especially Bartonella, can cause all sorts of neurological issues, which is why my doctor thought I had Bartonella, but I've done multiple tests, including Galaxy Labs and so far I'm negative for Bartonella.

For MCAS, I'm on NAC, loratadine, fexofenadine, Neuroprotek (includes quercetin, but also has luteolin and rutin). I've tried Ketotifen, but it did nothing. I will be starting on oral cromolyn soon. I also started on an H2 blocker, famotidine.

 

[Seven7]

I should of added that a week to 10
Days before period, is hell for me ( I have POTs) I pass out like a lot maybe 5 times in one hour. And just general
Malaise. So when the period comes is a relieve. Now is just me feel normal more than just remission.

 

[Diwi9]

I should of added that a week to 10
Days before period, is hell for me ( I have POTs) I pass out like a lot maybe 5 times in one hour. And just general
Malaise. So when the period comes is a relieve. Now is just me feel normal more than just remission.

Wow, that sounds like hell. During my period I have an exacerbation of symptoms along with interrupted sleep and cramps...very painful cramps. The cherry on the cake is that I also still break out and I'm 40

 

[Seven7]

Wow, that sounds like hell. During my period I have an exacerbation of symptoms along with interrupted sleep and cramps...very painful cramps. The cherry on the cake is that I also still break out and I'm 40

I was breaking out really bad (I think is a cfs gut flora thing, My electrophysiologyst wants me on the pill now for POTs. I have the appointment on Monday because the Periods are so bad for me (this is not CFS related, I have periods issues since I developed age 12).

 

[PinkPanda]

@pibee Maybe it's somehow related to changes in mineral levels?
http://iaimjournal.com/wp-content/uploads/2016/04/iaim_2016_0304_07.pdf

Measurement of serum calcium, magnesium and phosphorus level during different phases of menstrual cycle

Serum calcium
menstrual phase 9,1 +/-..
proliferative phase 9,6 +/-..
secretory phase 8,3 +/-..

Serum Magnesium
menstrual phase 1,77 +/-..
proliferative phase 1,44 +/-..
secretory phase 2,2 +/-..

Serum phosphorus
menstrual phase 4,12 +/-..
proliferative phase 3,32 +/-..
secretory phase 2,8 +/-..

 

[pibee]

interesting. Could be , especially because vitamin D has a big role in Mg and Ca metabolism, and phosphorus, and thats when i first experienced these improvements.

 

[Gondwanaland]

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.

Me too

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

I only feel well with enough estrogen. HRT helped me somewhat , but it is not the same as to producing it endogenously

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.

Abx have many effects on the body, including hormonal ones. Some abx inhibit MMPs, which I have observed will have an inhibitory effect (cascade) upon hormone production.

First time ever I have soar throat..

I get sore throat from juggling with estrogen x thyroid hormones.

 

[pattismith]

@pibee Maybe it's somehow related to changes in mineral levels?
http://iaimjournal.com/wp-content/uploads/2016/04/iaim_2016_0304_07.pdf

Measurement of serum calcium, magnesium and phosphorus level during different phases of menstrual cycle

Serum calcium
menstrual phase 9,1 +/-..
proliferative phase 9,6 +/-..
secretory phase 8,3 +/-..

Serum Magnesium
menstrual phase 1,77 +/-..
proliferative phase 1,44 +/-..
secretory phase 2,2 +/-..

Serum phosphorus
menstrual phase 4,12 +/-..
proliferative phase 3,32 +/-..
secretory phase 2,8 +/-..

interesting! but what about potassium?

I found this article about a case report of hypokalemic periodic paralysis, a disease with a specific sensitivity to blood potassium variations.

The girl had crisisof several days at a specific periods every cycle, starting 7-10 days before mentruation, always ending by the first day of menses.

They found that potassium levels were from 3.2 to 4.4 mmol/l, with the lower values associated to crisis.

So it's interesting to notice that electrolytes also can vary with the hormonal cycle and can affect us, especially as Neil Mac Gregor found that ME patients have electrolytes loss.

 

[Gondwanaland]

how did you do that? which labs should i do to check it out?
i basically dont get a time to pay attention to sex hormones, next to all doctors' visits i make. but my periods are mostly regular, and dont make much problems for me even. sometimes only 2 days. a bit of pain and that's it.

Ow yes, now i remembered. first time in life i started to have PMS was on NDT, never before!

To raise endogenous estrogen I had plenty of Manganese via green tea and some herbal teas. Teas are very adstringent and deplete fat soluble vitamins and essential w6 oils. Then I started supplementing with Borage oil - it is great to support hormonal pathways but it is highly pro-coagulation, so I had to stop it and am currently taking vit E & A...

I was taking Borage with Flax seed oil (which is a potent anti-coagulation), but it is reaally hard on the liver (actually poisonous?) and was causing me horrible insomnia and chills.

Vit C is a great anti-coagulant, but is also anti-estrogen. I think I will try to pair Borage with CoQ10...

I am on hypothalamic amenorrhea for several years now. I have always had PMS, and I think it was caused by low estrogen. Also always had cramps which kept me bedridden for 24h straight.

The main labs I test are Estradiol and Progesterone, and othes less frequently are FSH, LH, DHT, DHEA, S-DHEA, prolactin.

 

[tooth]

I know Selfhacked is frowned upon a bit on these boards and I still feel like a baby as far as researching goes, but the last few years I've been feeling my best from period -> pre-ovulation days and then terrible from ovulation onwards. Sometimes during ovulation I am one step away from a coma for ~3 days, it's so terrifying. I suspect my ME/CFS was virally triggered and came across this article recently which was eye opening for me.

It says CD8+ immune cells are required to fight viruses and these are lowered by oestrogen. I guess during menses we have progesterone to balance out the oestrogen.

There are a few women in the comments section who report similar findings.

 

[pibee]

My case is, from what i know, bacterial trigger. But improvements during period started to happen on vitamin D, when I started to have frequent viral infections, and now too I get soar throat a lot, while before never.

So, we should work on reducing estrogen, or?

I thought progesterone also drops during period.

 

[unicorn7]

I have this too! During menstruation I feel absolutely on my best

Before I got ill, I never had any problems with menstruation either, no pain, no mood swings or anything. I noticed early on in my illness, that I was best during my period.

The only thing that changed lately, is that I have swollen, painful breasts a few day before my period. That goes away as soon a my period starts.

 

[tooth]

@pibee - sorry! I didn't realise yours is bacterial. I just saw you were using AVs and thought there might be a viral component to your illness.

When I told my functional med dr about this earlier in the year she said oestrogen is at its highest during ovulation and progesterone lowest, whereas during menstruation they should be more balanced together. This is somewhat reflected in the graph you posted, but I still haven't got round to reading about all the hormone stuff properly yet. It's a very delicate balance!

My dr suggested I try DIM to block the oestrogen receptors (I think thats what she said it does, might be wrong). It works but I can't take too much of it or else it knocks my cycle off, and only use it during the days I feel I really need it.

@pattismith that's very interesting RE: electrolytes! I feel like I'm constantly having to keep them in check. Seem to need more potassium in my "crisis" times too.

 

[pibee]

I had Lyme (and bartonella) until recently, probably congenital or contracted early. If I still have it i dont know, but definitely not dominant anymore. In August I received Iv antibiotic 2 weeks, it was dramatic improvement but as soon as I stopped them i felt like I was hit by a truck. I went from walking about 5000 m a day to not leavin house, within days after stopping IV.

I got new sympoms (like occassional talking problem). And gut was ruined (ironic because i swallowed so many oral antibiotica that only improved my gut and was never better, until IV).
Then after that I got hit by viruses. Soar throat first time ever, and big mental ME attacks.
Then i started taking antiviral and stopped it.

All very confusing..

I have heard of DIM. Ah, great, yet another supplement to order. I am so sick of this. :-/