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My autoimmunity results - I'm very scared

Sherezade

Guest
Messages
97
Hi, i just got my autoinmunity results and i don't know how to take it. I have very low C3!

Acs antinuclears ANA 1/140 Negative
Acs antinuclears ANA 1/160. Negative
ANCA Anti citoplasm of neutrophils Negative
MPO Anti mieloperoxidasa 1.0 (0-5)
PR3 Antiproteinasa 3 1.0 (0-5)
Acs Antielastasa 5.1 (0-12)
Crioglobulins CRIO 0.22 (0-0.50)
Acs anti SS A (RO) 0.112 (0-0.300)
Acs anti SS B (LA) 0.066 (0-0.290)
Reumatic Factor < 6.72 (0-12.5)
CH50 45 (40-62)
C3 55 (84-170)
C4 21 (15-49)
VSG Globuls sedimentation 15 (0-20)

I was reading and low c3 could be for micotics infections. I have a candida overgrowth. But i can be also for nefrotic damage! Even though i had a full blood test a month ago and everything turned out normal I'm very scared. I will take those results to a reuma specialist.

:(
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
Thanks for that link meryl. I found it very interesting as Ive had double pneumonia and a lot of issues with Staph. aureus over the years. Ive never had this thing tested.

C3 deficiency is transmitted as an autosomal recessive trait. Patients with C3 deficiency develop severe episodes of recurrent pneumonia, meningitis, peritonitis, or sepsis. The most common pathogens are S pneumoniae, N meningitidis, H influenzae, and Staphylococcus aureus
 

Sherezade

Guest
Messages
97
Very helpful indeed Meryl, thank you very much. I get many respiratory infections very often, even before that i got sick. I thought it was because i'm a devoted heavy cigarrete smoker, but apparently it has something to do with the low c3.
 

Sherezade

Guest
Messages
97
Hi, auto-immunity = low endorphines

Have you ever heard about low dose naltrexone?

This might interest you, it has saved my life:
http://www.westonaprice.org/mentalemotional-health/moods-and-the-immune-system
A Lesson From Heroin Addicts

www.ldnscience.com
www.lowdosenaltrexone.org

Hello Marlene, thank you for the link. I just read it.

Could you elaborate a little bit more about your own experience with LDN? Did you have a autoinmunity diagnoses?

I would appreciate it a lot.
 

Marlène

Senior Member
Messages
443
Location
Edegem, Belgium
hello

I have positive ANA (80 - 320) since childhood. Some doctors gave me the diagnosis of lupus because of the butterfly rash, the sun sensitivity, the headaches, the fatigue, ... Other doctors laughed at me.

My last pregnancy was hell, I thought it were the hormones. It became worse, I was sick as a dog. In 2007 I collapsed, was brought to hospital, couldn't speak anymore. They told me it was 'nothing'. My mother insisted and they found antiphospholipid syndrome, thick blood and a small aneurysm. Three weeks later I had to go back to work. Don't ask me how.

One year later I crashed, lights went out for three months, I was semi-unconscious for three months most of the day. For 14 months I did not leave my bed. My mother fed me like a baby, my partner washed me, my 3 children were allowed in my room for 5 minuter per day only. I was completely intolerant to all light, sound and had a lot of pain. I could not even brush my own teeth without collapsing for days.

When I was able to leave my bed I visited a neural doctor who treated me for a year with procaine. Very helpful. I slowly regained my strength.

Then I met someone who explained me LDN. I decided to give it a try. It was too hard, I quit after a month. The dose was very low, the prescriber did not understand. I decided to try again one month later, I was desperate after all the success stories I had read about LDN. This time I started ultra low dose for 4 weeks. The prescriber laughed at me, said it would never work but it did. It generated huge herxheimer reactions.That was the tough part for let's say 6-8 months.
I slowly increased the dose about every two weeks and after 1,5 year I finally reached an acceptable dose.

During the time I used LDN, my ANA was always negative (but once) and a lot of symptoms have disappeared and never come back. I stopped the treatment for one year and still they did not come back. However the ANA was positive again. So I decided to start the LDN again ... and the ANA is negative again :)

Symptoms that have disappeared:
I'm able to listen to music again, I can read again, I understand what people say mostly lol, I recover much more quickly than I used to, I don't feel uncomfortable when people don't agree with me, I can write and make almost no more mistakes unless I'm tired, my adrenal fatigue is less, I can drive a car again ...
Imagine I was 80-90% bedridden before.

It does impact your sleep quality so I take 3 mg of melatonin to be sure to pass the night.

My latest blood test is for bartonella, it mimicks lupus. I will get the results in 2 months time.
 

Sherezade

Guest
Messages
97
Wow! Dear, I'm sorry that you had to go through all that, but i'm glad that you found your way to recover.

As you can see i don't have a positive ANA but if i have low C3 maybe there's some autoinmunity latent. So i want to stop it before it progress.

Something of your story has called my attention. Did i understand wrong or you had die off (herxheimer) symptoms for six months? How were you able to cope with that? How were you sure that it was die off symptoms and not that you were getting worse?

I ask because i was taking reverastrol which is a powerful antioxidant and antimicrobial and it made me feel like hell, so i stopped it. It actually made me bedridden for some days. And someone here mentioned it could be a herxheimer reaction, which i assume is good because something is being killed.

I wonder if i can get one of my doctors to prescribe me LDN. Maybe i can convinced my psychiatrist to do it. I will mention it for sure.

Thank you!
 

Hip

Senior Member
Messages
17,824
If you cannot get your doctor to prescribe LDN, you can do what many ME/CFS patients do, which is to buy the drug yourself, from overseas pharmacies such as these that do not require a prescription.
 

Sherezade

Guest
Messages
97
If you cannot get your doctor to prescribe LDN, you can do what many ME/CFS patients do, which is to buy the drug yourself, from overseas pharmacies such as these that do not require a prescription.

Thanks Hip, but i wonder if i get the 50 mg pills, how do i break them into smaller doses.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Thanks Hip, but i wonder if i get the 50 mg pills, how do i break them into smaller doses.

You don't break them, you dissolve them in distilled water (measured carefully so you can divide into the dose you want). Then you take your dose and keep the rest in a brown glass bottle in the fridge. It stays potent for a month.

Sushi
 

Hip

Senior Member
Messages
17,824
Thanks Hip, but i wonder if i get the 50 mg pills, how do i break them into smaller doses.

I do actually break the 50 mg pills into tiny parts, using a sharp knife, like this:

First cut the pill in half. Then cut each half again, to make 4 quarters. Then cut each quarter into 3 thirds. You will now have 12 tiny parts.

Each of these twelve parts will weigh 50 ÷ 12 = 4.2 mg, which is about the right dose for taking LDN before bed each night.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Hip

That could possibly be a bit high as a starting dose for many though. We are all so different and some seem to be very sensitive to LDN. I started at 1.5 mg and that was all I could handle for a while.

Sushi
 

PhoenixBurger

Senior Member
Messages
202
Would LDN be helpful for someone just starting out on this journey? Before having developed any major autoimmune symptoms ... still in those beginning stages .... with a new CMV diagnosis .... still trying to clear that first acute CMV infection .... but very worried (due to all the CNS symptoms and neuromuscular symptoms) that he may be on the track towards something worse .... ? Would LDN very very very very low dose be smart / intelligent / possibly preventative for him? Or totally wrong situation.
 

Sushi

Moderation Resource Albuquerque
Messages
19,935
Location
Albuquerque
Would LDN be helpful for someone just starting out on this journey? Before having developed any major autoimmune symptoms ... still in those beginning stages .... with a new CMV diagnosis .... still trying to clear that first acute CMV infection .... but very worried (due to all the CNS symptoms and neuromuscular symptoms) that he may be on the track towards something worse .... ? Would LDN very very very very low dose be smart / intelligent / possibly preventative for him? Or totally wrong situation.

It wouldn't hurt to try a very low dose of LDN. It is hard to predict who will respond. It is sort of...the proof of the pudding is in the eating!

Best,
Sushi
 

Sherezade

Guest
Messages
97
I do actually break the 50 mg pills into tiny parts, using a sharp knife, like this:

First cut the pill in half. Then cut each half again, to make 4 quarters. Then cut each quarter into 3 thirds. You will now have 12 tiny parts.

Each of these twelve parts will weigh 50 ÷ 12 = 4.2 mg, which is about the right dose for taking LDN before bed each night.

Has it worked for you? Do you feel better?
 

Marlène

Senior Member
Messages
443
Location
Edegem, Belgium
You need:
1 tablet 50mg Nalorex of Naltrexone
10ml NaCL 0,9% / distilled water
1 little dark bottle 30 ml with dropper

Preparation:
Clean the bottle
Add the tablet of 50 mg
Add the ampul with 10 ml of distilled water
It takes about 2 hours to dissolve.
The concentration LDN will be as follows : 0,5mg LDN = 2 drops.
The bottle contains in total 200 drops = 50mg LDN
Keep 1 month in the fridge, then change the content.

How to take it:
Shake the bottle
1 drop = 0,25 mg
2 drops = 0,5 mg

Safe start-up:
Week 1 - 4: 0,25 mg
Week 5 - 6: 0,50 mg
Week 7 - 8: 0,75 mg
Week 9-10: 1 mg

Pour the LDN drops in a spoon and drink a bit of water between 9.30 pm - 12pm. See how your body reacts the next day. Sometimes half an hour can make a huge difference. I feel best when I take it between 9.30 and 10pm
 

Marlène

Senior Member
Messages
443
Location
Edegem, Belgium
Maybe i can convinced my psychiatrist to do it.

Good idea, it was a psychiatrist who proposed me the LDN in the beginning. He had Parkinson and knew the benefits for the neurological symptoms and fatigue.

If he/she reluctant, propose them to mention one pill per month on the prescription (instead of one pill per day for drug addicts). Some doctors feel more at ease prescribing it off label that way.