3 Things that Help the Most!!

[Enid]

1) Thyroxine

2) Professional potency Probiotics

3) One a day complete Multivitamins and Minerals.

(but constant rests from everything a must too)

 

[Ninni]

In no particular order

1. Clonazepam
2. Bisoprolol (reduces my POTS symptoms)
3. Rest (meaning complete inactivity, lying in complete darkness and silence)

If I could add a 4th thing to my list that would be intravenous immunoglobulins which temporarily halted down the disease progression. My ME has worsened every year except for the year I was able to recieve the immunoglobulins. It started getting progressively worse again after the hospital stopped giving me immunoglobulins.

 

[Mij]

magnesium and taurine injections- improves energy and overall feeling of well being
fish oils- helped with cognitive problems and brain stuck
RAW organic sauerkraut with added probiotics- cured my gut issues that no other probiotic came close to

I also believe low dose vitamin D helped with Cal/Mg absorption.

thought I'd add my 3 worst supplements:

Imunovir
Transfer Factor
LDN

 

[merylg]

1) Aggressive rest & pacing of activity/rest

2) Dietary Modifications - No wheat/fruit instead, No chocolate (bromine issue), No white potato (Allergy to potatin protein) Kumera sweet potato OK, No coffee (Allergy - massive hives on back, mainly), No eggplant (Allergy - joint swelling, hand only), No Capsicum/Peppers, No chillies, Low amount tomatoes (ie Nightshade problem), No onions, Low Carb/High protein diet, Increased intake of fresh vegetables & Olive Oil.

3) Supplements & a modified version of Methylation Protocol - still fine tuning!

 

[SOC]

1) Valcyte
2) B-12 Extreme (from Prohealth -- a very high dose sublingual lozenge that includes multiple forms of B-12)
3) Transfer Factor Essentials (also from ProHealth -- immune support supplement)

Those are the big ones, but without aggressive rest and pacing, I don't think any of them would work as well. I also did the Pall Protocol (which also works as a methylation protocol) before I did any of the above, so that may have been an important factor, too.

 

[Lee Ann]

I have tried so many different methods but it was until I had horomone pellets that I noticed a dramatic change. My doctor also put me on a gluten free dairy free diet. So, the combo of diet and pellets, and a few supplements, I have improved about 20 percent. The diet change was for Hashimoto's. I would recommend the pellets. I tried creams and drops and it had no effect

 

[penny]

1. LDN
2. Lysine
3. Aleve/Naproxen

And the runners up: Glutamine (cognitive functioning), pacing/rest, ambien, salt/water loading, magnesium, massage & acupuncture (maybe), low carb/dairy/gluten diet

 

[Chez]

1. Agressive rest, THIS WAS THE MOST IMPORTANT FOR ME i.e. no light no sound and meditation into an alpha state with Pacing. Used sedative if unable to rest in the beginning, but now able to achieve complete rest without meds and huge improvement noted
2. Diet and Nutrition
3. Sleep is the most important and use - sedative antihistamine, melatonin and valerian together with good sleep hygiene

Also lymph drainage, daily stretches, yoga, lots of water, salt, eating small regular meals, ImmunoPro and Glut Immune. Cannot do without L-glutamine, tumeric, coconut oil.

 

[bedman]

1. Sun & heat
2. Rocephin
3. Vit C

 

[mellster]

I would like to add medical cannabis to the runner-ups, there is hardly anything better for pain, sleep, diabetes insipidus, stomach/bowel inflammation and inflammation in general.

 

[hurtingallthetimet]

hot bath helps some but its hard and exhausting to take a bath so sometimes so exhausted i just lay on floor when get out..but the hot water does feel good
heating pad helps some
pain medications and anxiety medications help also...so many things go along with these illness though

 

[Live And Let Die]

in no particular order

famvir

ldn

klonopin

 

[FunkOdyssey]

For those seeing positive results with LDN, what dose are you on? Did you start at that dose or work up to it? Did you experience a flare of symptoms in the beginning which disappeared as you continued?

I have a theory that most people with CFS will see a worsening of symptoms initially that can either be avoided by slow titration of the dose, or by simply pushing through it if it's not so severe as to be dangerous. Many quit during this period though (before adaptation occurs) and conclude, perhaps falsely, that LDN is not for them or makes them worse. There's also the issue of dosage, because too high a dose will be counterproductive and this varies depending on an individual's metabolism of the drug.

 

[penny]

For those seeing positive results with LDN, what dose are you on? Did you start at that dose or work up to it? Did you experience a flare of symptoms in the beginning which disappeared as you continued?

I have positive effects at a very low dose (.5mg), I worked my way up to 2.5mg at one point but I started getting depressed and extremely sleepy during the day (shift from my cfs-norm of tired/wired). This went away when I went way back down.

I had mild sleep disturbance when I started (and at significant dose increases) but this went away and I sleep better now because I have less pain.

 

[Live And Let Die]

I pretty much started at 4.5 and took a little while to get used to the energy boost and less pain (I take mine in the morning).

I really don't understand this whole "worsening of symptoms" herx theory. Nothing I have taken has ever made my CFS worse (well except beer ). Everyting I've taken either didn't work or worked immediately. I felt incredible benefits after my first pill of Famvir.

 

[mellster]

I started with half but soon upped to 4.5 mg and only get slightly increased pain within the first hour of taking it. I also can get drowsy after a while and increased immune system reactions, I usually then scale down to a half dose again. Overall LDN seems very easy to tolerate though which is consistent with current research (it doesn't stay in the body for very long).

 

[Frankie Dene]

I started in LDN but had bad sleep problems, waking up every 2 hours. I have cut it progressively down to now be at .5 mg. Taken in the morning. But they say you should take it at night. what do those who have had success on it believe about the time you must take it?

 

[Mij]

I have positive effects at a very low dose (.5mg), I worked my way up to 2.5mg at one point but I started getting depressed and extremely sleepy during the day (shift from my cfs-norm of tired/wired). This went away when I went way back down.

I had mild sleep disturbance when I started (and at significant dose increases) but this went away and I sleep better now because I have less pain.

This was my problem with LDN, started at a low low dose and it disrupted my sleep, made me feel depressed or put me into an aggitated bad mood, similar to when I took Valerian years ago. I don't have pain so this is not my problem but the mood issue was just plain unpleasant so I discontinued.

 

[sensing progress]

1.) LDN
2.) melatonin
3.) doxepin (sleep sustainer)

 

[Tristen]

Cidofavir

Pacing

HydroxyB12