Trip to the charite in Berlin, part 12

Blog entry posted by TiredSam, Jan 16, 2017.

Here are the treatment recommendations in my letter from the Charite:

Recommendations:

Vitamin D 1000 E daily in the morning eg Vigantol

Zinc, selenium, iron, magnesium, phosphate, supplement if deficient
• Zinc eg zinc aspartate capsules N2 2x20 mg for 4 weeks
• Selenium eg Selenase Tbl. N2 2x80 mg for 4 weeks
• Iron eg ferro sanol duodenal every 2 days on an empty stomach for 8 weeks

In the case of irritable bowel syndrome treatment with psyllium husks (e.g., mucofalk) 2 -3x daily, 1-2 bags or measuring spoons (dissolved in 150 ml of water).

in case of irritable bowel syndrome with diarrhea try Xifaxan (Rifaximin) 3x200 mg for 8 days

Food allergies and intolerances should be excluded or treated

Improvement of sleep quality (general sleep hygiene, tryptophan, melantonin, low Doxepin 5-10mg, diphenhydramine, if not adequate try temporarily eg 3 days a week Zolpidem / Zoplicon)

For pain, if paracetamol or ibuprofen is not sufficient, a therapy trial with Lyrica can also be useful, in low dose 100 mg initially only in the evening or Amitryptilin in low dose in the evening, with frequent increased central pain sensation, both drugs also act as a laxative. We advise you if necessary to consult a pain therapist

There are several therapies that show that NADH supplementation with 5 - 20 mg daily, alone or in combination with coenzyme Q10 leads to a symptom improvement (Santaella ML, 2004, Castro-Marrero, 2015), therapy recommendation: NADH 10 mg daily for 8 Weeks, available from various manufacturers.

There are several small studies that show that some patients benefit from a high dosage of B vitamins. Therapy recommendation Vitamin B Complex forte Hevert 50 tablets of which 2 tablets daily corresponds to 1000 μg B12 together with folic acid 10 mg daily For 8 weeks.

Omega3 fatty acids have efficacy in fatigue and concentration disorders, a controlled study also showed efficacy in CFS (Behan 1990). There are also many positive studies (Grosso G, 2014) in patients with depression and concentration disorders. Therapy recommendation Omega3 fatty acids with a high proportion of eicosapentanoic acid (EPA) of at least 500 mg daily.

Non-medication:

Stress reduction through "mind-body therapy" such as autogenic training, yoga, meditation, breathing therapy

"Pacing" is important: observing a regular daily routine with activity adapted to the reduced resources and light physical training (for example short walking), over-exertion can increase exhaustion for long periods, good information material available from Fatigatio (German CFS Association).

Accompanying therapy for any psychological complaints (e.g., reactive depression due to disease-related complaints) by means of behavioral therapy or antidepressants

There are several therapies that show a symptom improvement with neuromodulatory drugs. We will be pleased to provide your GP with a summary of the therapies for CFS

Further information for physicians on our homepage and the US guidelines of the IOM by googling IOM CFS or http://iom.nationalacademies.org/~/media/Files/Report Files/2015/MECFS/MECFScliniciansguide.pdf

Since we are not able to offer further treatment to patients with CFS, we hope that you can implement the treatment recommendations together with your family doctor.

We are available for any questions from your family doctor.


Coming next - my trials of some of these suggestions.
  1. mari_gold
    Hello @TiredSam :)
    great report, still have to go through it all though.
    Can you tell what is meant by "neuromodulatory drugs", Antidepressants?
  2. TiredSam
    My sleep is fairly ok so I didn't try any of the recommendations related to sleep, sorry.
  3. Little Bluestem
    I'm especially eager to hear if any of the "Improvement of sleep quality" stuff works.
    TiredSam likes this.
  4. CFS_for_19_years
    "a therapy trial with Lyrica can also be useful, in low dose 100 mg initially only in the evening or Amitryptilin in low dose in the evening, with frequent increased central pain sensation, both drugs also act as a laxative."

    Ummm, errrrr, both of those drugs are constipating. Lyrica is probably better tolerated than Amitryptiline when it comes to daytime sleepiness. Doxepin (Sinequan) is another tricyclic antidepressant similar to Amitryptiline, but I find it doesn't cause as much daytime sleepiness.
    TiredSam likes this.
  5. Bookworm84
    That's really interesting. It's quite exciting that you have lots of information and things to try. Co-enzyme Q10 and B12 seem to come up a lot in symptom treatment for CFS, it'd be good to hear about your experience if you give them a try.

    I was on Lyrica last year for nerve pain and I found the side effects terrible. I'd advise reading up on it before you commit. Although everyone is different and it may work great for you!

    Can't wait to hear more, good luck!
    mari_gold, sarah darwins and TiredSam like this.
  6. TiredSam
    Thanks for that radio report, I've put it on my listening list.
    sarah darwins and Joh like this.
  7. Joh
    Here's your reliable blog-stalker. Very interesting, thank you for your time and effort to translate everything! I wonder if they forgot two text modules in my report (or it's because another doctor wrote mine), learned some new stuff from reading yours!

    Looking forward to hear about your trials. Took the recommended supplements for 8 weeks but had no reaction.

    By the way, OT, but did you hear this radio report (in German) from what I believe is your Bundesland? It's pretty good, made by a former radio reporter who got ME: http://www.br.de/radio/bayern2/gesellschaft/notizbuch/chronic-fatigue-syndrom-so-viel-mehr-als-nur-muede-100.html
    mari_gold, sarah darwins and TiredSam like this.