• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Help please! Bad crash after covid

Learner1

Senior Member
Messages
6,305
Location
Pacific Northwest
Very interesting about how EBV can interfere with pregnenalone production by way of hijacking the mevalonate pathway.

https://selfhack.com/blog/homing-fundamenal-cause-epstein-barr-reactivation/
I note that a man, Joe Cohen wrote that. He is knowledgeable and well researched, and has many good suggestions in that piece, but I learned the hard way to be very careful of pregnenolone use in women.

Pregnenolone is at the beginning of the steroid pathways. It can have any of the fates on the bottom of the diagram.
Screenshot_20220319-103200.png

My doctor suggested I try 150mg pregnenolone for just the reasons mentioned. Unfortunately, it all decided to go to estrogen and estrogen dominance in women is not a good thing, leading to female cancers... In other women, it has gone mainly to testosterone or to cortisol, which has caused other problems.

For me, even 10mg pregnenolone was too much. I've done better taking DHEA and testosterone and keeping my levels at that of a 30 year old woman, as well as progesterone. And, many of Joe's other suggestions have been helpful.
When that link came up because of my search words, this link to COVID came up, too. It has to do with CoQ10, which I was searching because of the mevalonate pathway interference by EBV.
I'd assume keeping CoQ10 at high normal would be good? And PQQ for some people.
 

GlassCannonLife

Senior Member
Messages
819
Have you been tested for other infections? There are reports of reactivations of herpesviruses after both the shot and the virus. The immune system takes a hit and keep the viruses in check. You might try PCR tests for EBV, HHV6, and CMV if you don't have symptoms of other herpesviruses.

Yeah this is what I'm worried about (among other things) at the moment..

Propped up on 700 mg pregnenolone and 4 tsp cumin a day.. Nasty inflammation feeling barely kept at bay. Extremely disabled atm, can hardly use phone a few min, can't shower, can only toilet and eat.. So can't get blood tests atm unless I go to the hospital it seems, or try to convince a doctor to organise home tests and test for those things.

This part of a crash is generally critical for retaining function ie can't push it at all or I will lose more and more (unless I'm already completely done underneath these meds).

Not sure how to get through this.
 

Long Haul Mono

Senior Member
Messages
110
I personally use N-Acetyl Cysteine (NAC) for ME reasons however, I also had someone who had a COVID-related incident tell me she was able to reduce the worst of it using NAC.

I can't say if it will or won't work, but worth a try?
 

GlassCannonLife

Senior Member
Messages
819
I personally use N-Acetyl Cysteine (NAC) for ME reasons however, I also had someone who had a COVID-related incident tell me she was able to reduce the worst of it using NAC.

I can't say if it will or won't work, but worth a try?

Thanks, I have been taking it the entire time at least and no benefit unfortunately (glutathione itself also doesn't help).

Elvira could try it though for sure if she hasn't yet
 

Wayne

Senior Member
Messages
4,300
Location
Ashland, Oregon
I ran across a testimonial recently by a man who struggled with long COVID-19 for several months. One of his worst symptoms was Orthostotic Intolerance, or Vertigo. He said after he took a single dose of Ivermectin, his vertigo disappeared within 6 hours. So it does seem possible to completely upend a lengthy COVID-19 recovery if you can find just the right thing that will work for your body. -- Best...
 

elvira

Senior Member
Messages
146
How are you doing @elvira ?

I’m so sorry GlassCannonLife:(( it’s so scary losing the small things we could do, it’s hell really. But I do have a feeling that things will turn around, it’s just a matter of time. I read some swedish research saying that the immune cells are still affected 4-5 months after covid infection (with hyperinflammation etc), who knows - after this time maybe things would get better if it hasn’t before.

I know I don’t have hh6 or cmv since earlier test but I am worried about EBV. But like you I can’t really get tested, like you say it’s crucial not to push ourselves.

I don’t really know how I’m doing... Maybe a bit more stable. I’m taking cumin and aspirin and today I decided to start a small dose of LDN since it could help the immune system. My blood tests show low NK cell function and LDN is proven to raise it so who knows, Maybe it’ll help. I still have a fever, it’s like my body can’t beat this horrible virus. I’m waiting for the Ivermectin I ordered online.

Thinking of you🌸
 

dave11

Senior Member
Messages
158
FIRST EVIDENCE PUBLISHED OF PERSISTENT CLOTS IN PATIENTS WITH CHRONIC COVID OR LONG COVID (see image).

http://www.sun.ac.za/english/Lists/news/DispForm.aspx?ID=8621

THIS IS A STUDY ALREADY PEER-REVIEWED.

These findings support the 6 steps to follow described in the “MANAGEMENT OF THE PATIENT WITH PERSISTENT SYMPTOMS OF COVID”:

https://www.researchgate.net/public...THE_PATIENT_WITH_PERSISTENT_SYMPTOMS_OF_COVID

And they support our Treatment Schemes that include Fibrinolytics, Anticoagulants and Antiplatelets.
Our indication is that all patients with Chronic Fatigue Syndrome (CFS) and/or Persistent COVID Symptoms should undergo a: VENOUS BLOOD GAS MEASUREMENT test, which is useful to know: VENOUS OXYGEN SATURATION (SvO2 or SatvO2). This will be reduced if there is a lower oxygen supply, the most frequent cause of this in Chronic COVID and CFS, the presence of persistent Bioclots.

As an aid to the diagnosis of persistent clots, the patient must also perform a D-dimer analysis (which may be within normal parameters or slightly elevated) and then the patient must follow the "Therapeutic Test" for the diagnosis of Infection. Persistent Viral. As this Test includes an antiplatelet such as Aspirin, and a diet high in Lysine, if at the end of this Test an increase in D-dimer is identified, this would indicate the presence of persistent Bioclots.

If there is dyspnea or a lot of fatigue, it is recommended to include in this Test 500 mg L-Lysine, which is sold without a prescription, as a nutritional supplement.

The drugs and doses of the "Therapeutic Test" are detailed in the document at the following link:
https://www.researchgate.net/public...SSIST_DIAGNOSIS_OF_PERSISTENT_VIRAL_INFECTION
 

GlassCannonLife

Senior Member
Messages
819
Doing poorly.. Might do hospital in the next few days.

Going to try and just wean off the pregnenolone 50 mg every few days and if I get fever over 38 C for 24+ h, can't handle the symptoms, can't sleep at all for a couple of days, or crash so badly it seems dangerous, then I'll go in 👍

Also ordered some ivermectin today.. From a vet supply store lol.

Thinking of you too @elvira . Hopefully it is just a matter of time. 4-5 months are ok for me. Just gotta go into a coma for the duration or something? Haha
 
Last edited:

elvira

Senior Member
Messages
146
Doing poorly.. Might do hospital in the next few days.

Going to try and just wean off the pregnenolone 50 mg every few days and if I get fever over 38 C for 24+ h, can't handle the symptoms, can't sleep at all for a couple of days, or crash so badly it seems dangerous, then I'll go in 👍

Also ordered some ivermectin today.. From a vet supply store lol.

Thinking of you too @elvira . Hopefully it is just a matter of time. 4-5 months are ok for me. Just gotta go into a coma for the duration or something? Haha

Hahah yes a coma is sounding like a vacation... hope the Ivermectin will do something! Mine is sent from the US so the pandemic will probably be over once it arrives😅