A thanks to Cap’t Dave

Back in 1999-2002 period, a chap called Dave Williams (Cap’n Dave) advocated some specific treatments to help CFS patients. He was active on the old Yahoo group that I was a co-moderator on, https://groups.yahoo.com/neo/groups/CFSFMExperimental I ended up incorporating his suggestions into my treatment regimen then. He arranged bulk purchase of supplements (L-Glutamine, CoQ10, Spezzatina (Licorice) etc. and send them free to people that made donations to his ocean health charity (SeaQuake) at that time.

Like me, he ended up successfully treating himself and also has a Master of Science which tends to bring with it a systematic approach to this illness. He has moved on with his life, but I thought a shout out of thanks was due!

With all of the microbiome research, his suggestions are in good agreement (for a significant subset). Today the lists of issues to address will be much longer than his summary in 2000.

You fail to understand that NO SINGLE TREATMENT will ever get fantastic results when used on a PWC! The single therapy approach is doomed to failure because CFS is a multiple problem caused by many months or years of hyperimmunity! People that say they have sudden onset CFS simply do not realize that they were sick for along time and never recovered. The illness they associate with the start of their CFS was
simply the straw the broke the camel’s back. If you want to recover
from CFS you must address hyperimmunity, poor red cell health,
hypoadrenalism, hypothyroid, hypoglycemia, poor NK cell activity, and
multiple nutrient depletion. And, you must address all these factors
at the same time—otherwise your recovery will be limited.
Dave Williams, 2000

What was unknown (not possible to test even!) was the microbiome aspect which links many of these to specific microbiome shifts. So each shift needs to be addressed. Some examples:

Immune Manifestations: Constipation , Taxonomy Matches: 20
Comorbid: Hypothyroidism , Taxonomy Matches: 11
Comorbid: Histamine or Mast Cell issues , Taxonomy Matches: 18
Neurocognitive: Brain Fog , Taxonomy Matches: 29
Neurological-Sleep: Night Sweats , Taxonomy Matches: 9
Neurological-Audio: Tinnitus (ringing in ear) , Taxonomy Matches: 8
Post-exertional malaise: Worsening of symptoms after mild physical activity , Taxonomy Matches: 17

So I raise a glass of Rum to old Cap’n Dave in thanks!

maryann stutchman 3:13 pm on September 29, 2019

After taking Multiple vitamins for years, I do not know which ones help. Any suggestions on the best ones, you recommend would be appreciated. I am a 35 year survivor and feel my self deteriorating. I have just gone to a power chair. I am 78 and often forgert my vitamins/ Time to buy more and better. Thank you for your sharing posts.
- lassesen 4:26 pm on September 29, 2019
  
  See https://cfsremission.com/2016/01/07/the-frugal-recovery-plan/ for a list that I put together a while back.
Capt. David Williams 9:42 pm on September 29, 2019

Lassesen, thanks for remembering me. The single best treatment that works for me is 10 mg liquid prednisone for 3 days on and three days off. I am also walking 4-5 miles everyday. And still take nutrients. I am 78 years old. My whale group, the Deafwhale Society, is sick active in whale research. I also have an apartment complex in Dumaguete City Philippines. If you ever get this way, please stop by. Our web page is: https://dumaguete-studio-apartments.com As you know, I am also active on Linkedin!

Again thanks for the email.
- lassesen 6:09 am on September 30, 2019
  
  I just looked at the microbiome impact of prednisone, and it alters many bacteria favorably. And is flagged as improving (based on microbiome-symptom patterns) many of the typical PWCfs issues (but not all of them).
  
  http://microbiomeprescription.azurewebsites.net/Library/Modifier?mid2=1248
Capt. David Williams 5:40 pm on October 12, 2019

I should also add that I am looking closely at Matrix metallopeptidase 9 (MMP-9), also known as 92 kDa type IV collagenase, 92 kDa gelatinase or gelatinase B (GELB), is a class of enzymes that belong to the zinc-metalloproteinases family involved in the degradation of the extracellular matrix. In humans the MMP9 gene encodes for a signal peptide, a propeptide, a catalytic domain with inserted three repeats of fibronectin type II domain followed by a C-terminal.

There has always been a suspicion of a defect in the ability of bone marrow ability to turn out healthy red cells. Studies done on mice show that excess MMP9 induces a form of anemia. Many doctors has suspected a mycoplasma infection but I see raise MMP9 as being the culprit. At any rate, the treatment for mycoplasma was long term Doxycycline. Many CFS patients recovered and many did not.

I think the doctors blew it by not looking closely at MMP9. Doxycycline and minocycline also lower MMP9 and may well account for the recovery of those that took 100mg-day of either of these antibiotics for 3 months.

There is a lot of work to do in this area so be sure to consult a doctor.
- lassesen 7:34 am on October 13, 2019
  
  Interesting because I view a lot of ME/CFS symptoms as being a form of cellular hypoxia which may be the result of multiple factors interacting. Hypercoagulation, vascular constrictions are two dominant players but I have also included issues with red-blood cells (the carriers of oxygen) – including hemoglobin being damaged or impaired, a less flexible surface and other visual changes which was reported by a physician back in the 1990’s in New Zealand.
  
  It’s the cumulative effect of many little items. Of course, altering the oxygen level will alter the microbiome.
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