Chronic Fatigue Treatment - Other potential treatments for CH?

[cromestar]

Prior to this current cluster I was a newbie sufferer of chronic fatigue syndrome (post covid issue).  I was recently working with a chronic fatigue specialist before my cluster started.  Covid/Chronic Fatigue seemed to re-activate dormant viruses within my system.

I was about to start some prescriptions prior to this cluster, but I decided to wait until the cluster was over.  However, this has proven to be by far the longest, and least predictable cluster of my life and I am starting to wonder if the issues I was looking to treat for chronic fatigue are tied right into the severity of this cluster.  I am curious if anyone has any experience with the prescriptions below, there seems to be a lot of similar purpose to some other remedies that are discussed on this website.  ie vitamin D regimen as an anti-inflammatory, and benadryl as an anti-histamine.

I was looking at starting scripts of:

Cromolyn Sodium - this is a mast cell stabilizer for controlling histamines (my histamine levels are high on my bloodwork)

Famciclovir - this is an antiviral for controlling high levels of epstein barr and herpes 6.  Again, two dormant viruses that are now showing up in high levels in my system post covid.  They are causing inflammation from what I understand.  See link about herpes 6 being stored in the vagus nerve, which also seems relevant...  https://hhv-6foundation.org/chronic-fatigue-syndrome/cfs-a-herpesvirus-infection-of-the-vagus-nerve

Famotidine (pepcid) - antihistamine, not sure I follow the core reason for this one.

NAC 600 - not sure if relevant to CH

 

 

[Tony Only]

14 hours ago, cromestar said:

Prior to this current cluster I was a newbie sufferer of chronic fatigue syndrome (post covid issue).  I was recently working with a chronic fatigue specialist before my cluster started.  Covid/Chronic Fatigue seemed to re-activate dormant viruses within my system.

I was about to start some prescriptions prior to this cluster, but I decided to wait until the cluster was over.  However, this has proven to be by far the longest, and least predictable cluster of my life and I am starting to wonder if the issues I was looking to treat for chronic fatigue are tied right into the severity of this cluster. 

I'm sorry I can't say anything about the scripts you are asking and may even confuse you further but these are what came to mind for me. I think I have seen others think about the same things, post covid CFS (or sometimes just regular CFS) somehow interacting with CH.

One treatment I remember seeing often in finnish CFS sites is LDN (low dose naltrexone, an immunostimulant) and (in there) I have seen claims that it would also help CH. I have used it myself for Chrohn's disease, it was super efficient but turned out later I do not have Chrohn's - at least not a typical one. I am personally sceptic that it could help "classic" CH but maybe when there's some kind of relation to CFS ?

One female CH patient in Finland who received help for CH via "carnivore diet" wrote that she has mast cell activation syndrome, which is the condition that triggered CH in her case, according to her.

I hope you find solutions and start feeling better ! 

Edited July 23, 2021 by Tony Only

[cromestar]

Thanks Tony, I did discuss the low dose naltrexone with the chronic fatigue doctor.  If I recall my conversation correctly, that was an option to try down the road after I started with the prescriptions above.

I'll keep you all informed as I try to shift over to start these vitamins and medications.  I am usually a good responder to low dose verapamil, but this cycle was the first where after 4-5 weeks the headaches broke through completely.  I am currently on day 12 of loading 50,000iu+ with the Vitamin D regimen, but zero help so far.  I'd like to add Quercetin to the mix, but I am confused as to a possible interaction with verapamil so I am trying to slowly wean myself off the verapamil and then we'll see where it goes from here.

Stay tuned

[spiny]

Hi Cromestar! 

I just wanted to be sure that you are taking the co-factors with the D3. They are very important and you need the lot for it to work well. You need the K2, Omega Three, calcium, etc. that go with it. Can you fill us in which ones you are taking?

Pepcid is for excess stomach acid. It is given here for reducing the acid release when eating that causes some people pain. So, anti-acid, not antihistamine. Perhaps one of the other meds given is prone to causing tummy issues? It is over the counter here now. As is Benadryl. 

It is disturbing to see all the people who are suffering post Covid!!! 

[cromestar]

Thanks Spiny.  Yes I was taking all of the co-factors that Batch requested, my countertop looked just like the picture!  For those keeping track of the vitamin D regimen, my results after 12 days brought me to 112 ng/mL and my calcium to 9.9mg/dL.  I do not know what my starting point was before loading up on Vitamin D, all I have to offer is a 2018 blood test (when I was not having a cluster), where my vitamin D was 32 ng/mL and my calcium was 9.7mg/dL

I also started to have some moderate nausea and diarrhea on that 12th day.  It could be purely coincidence but it was far from on my head.  I was feeling pretty bad.  I stopped taking the Vitamin D at that point, I am weaning myself off verapamil and will start taking the anti-viral and mast cell stabilizer by the end of this week.

 

 

 

[spiny]

12 days of loading and you were up to 112ng/ml. So, at that point you could reduce it to 10,000/day for maintenance. You would not continue at the 50k/day dose.

Were you taking the Benadryl with it? That can make a big difference for some.

Intestinal distress would drive me to drop them too!!!