Not a Treatment Plan, Not a Protocol, A Model

Often I have had to explain to correspondents that I do not have a protocol, nor a treatment plan. If you do exactly what I did for my last remission, it may not work for you. An analogy may help,

  • Protocol: Assemble a kit house (aka see Ikea Flat Pack Shelter for an example)
  • Treatment Plan: Buy a house plan and hand it to a builder to build.
  • Model: Describe what you need in the house — how many bathrooms, bedrooms, living areas  (Media room, internal outdoor plaza) etc and then figure out how to make it so.

Every person’s microbiome is unique when they were healthy, more unique than their DNA!  When they become sick with CFS, it changes in unique ways. The general pattern appears similar (three families of bacteria are overgrown, three families are greatly reduced from healthy people’s). Most infections that MDs treat are single bacteria strain or single virus.We are talking about dealing with 6 families (each family may contain dozens of species, each species may contain hundreds of strains).  Some strains may be resistant to certain antibiotics — in other cases, the entire family is resistant to certain antibiotics.

The model suggests things to try — whether any item works for you, cannot be determined. If it does not, you just move along to the next suggestion. Using the model, we can estimate the probability that certain antibiotics families may help (or hurt) as well as certain herb/spices may help (or hurt). Similarly for probiotics, some can hurt, some can help and some may do nothing.  These are not certainties, just probabilities to increase the odds of a remission.

Patient Examples

I do not like to get involved with patients. I am not a medical professional. All education received from this site should be reviewed with a knowledgeable medical professional before starting.  Some readers do ask for help and forward very deep and comprehensive medical records. I will do 1-2 reviews a month, and make suggestions (to be reviewed by their medical professionals!!). Often, these correspondences reveal issues that cognitively impaired CFSers have trouble with (no brain to research) etc. This is compounded by the fact that the model while simple to understand, is very complex to derive treatment paths from. Most CFSers would prefer a protocol to blindly follow.

With that said, I will look at a CFS patient in Spain and put together suggestions with explanations of why for them. Spanish MDs seem friendlier to prescribing some items to CFSers than US MD’s.

Patient has known Hypoperfusion

Hypoperfusion is inadequate supply of oxygen (and nutrients) to body organs. This is seen in some 80-90% of CFS patients when a SPECT scan is done. It was seen in mine, it is seen in others. Dr. Daniel Amen (seen on PBS often) does a nice short summary (one of my daughters had her SPECT done by him – with over 60% of the brain showing hypoperfusion). Hypoperfusion and hypoxia (altitude sickness due to low oxygen) are related in symptoms.

The cause of this hypoperfusion is probably hypercoagulation (thick blood – and thus slow moving, hence less oxygen delivered) and fibrin (thin threads that can form, often they will block or slow the movement of red blood cells, and is suspected to be the cause of odd looking red blood cells reported from New Zealand).

My number #1 recommendation is a heparin-piracetam cocktail! Heparin is the body’s natural anticoagulant (thus you are treating hypercoagulation naturally). Normally it is injected, but it can also be done sublingual (under the tongue) [2004]

For other items see  Fibrinolytics page.

NOTE: These impacts brain fog, you may be feeling better — do not assume that your physical restrictions are also fixed. Do NOT EXERCISE as a result, you will just be setting yourself up for a crash!

What to do first?

Working with another Spanish CFS patient, their main concern was gut issue. This was a good starting point, it is a small target that is easy to monitor (number of movements, types of movements, etc) and thus provide concrete object monitoring.  That patient has been very happy with the improvement to date, we have more to do — but their family have seen the change and are now supportive of continuing.

This patient wanted to fix the microbiome first when I asked what symptom. The patient want’s big steps instead of small steps like the other patient. A small step approach is best, but the personality  type that often gets CFS are often addicted to big-steps.

First Step For the fast pace person

Heparin and piracetam can be done at the same time with everything below. There is no know interactions. Hence, they need to get a heparin prescription. Heparin dosage will be as set by their MD. For piracetam,  I would suggest 1600 mg, 1 hr before the heparin is done sublingual (based on absorption time/half life of piracetam). ALA may also be taken at the same time.

The Path to Herx Pugatorio!

The first item would be a prescription for minocycline (? 2-4 weeks). This will also help with brain fog. It is well documented as a neuroprotector. IF there is no herx, then add in (slowly) bromelain, serrapetase, lumbrokinease and nattokinease. All of these items do two things:

  • Increases penetration of minocycline into tissue by up to 10x
  • Dissolve fibrin (thus improves blood flow).

I cannot caution enough that they need to be slowly introduced at a very low dosage and slowly work up. The herx can be sudden and massive. Taking EDTA and/or NAC with the minocycline will also increase herx. Both EDTA and NAC are biofilm breakers and thus make the minocycline more effective against the family of bacteria that this targets.

Concurrent (at the same time) as the above, take the following probiotics (adding one every 3 days unless a major herx occurs):

These appear not to be significantly impacted by minocycline. The hope is that they will fill up the microbiome space of the bacteria killed by minocycline.

Once the herx has stopped from minocycline  (and you have added all of the items to increase herx), then it is time to stop the minocycline and switch to herbs.  Keep taking the 3 probiotics cited above.

  • Get fresh Thyme, grind it and pack  it into “00” capsules. slowly work up to 6-8 per day
  • Get fresh Oregano, grind it and pack  it into “00” capsules. slowly work up to 6-8 per day
  • Add 6-8 capsules of Neem slowly
  • Add 6-8 capsules of Tulsi slowly
  • Add 6-8 capsules of Olive Leaf slowly
  • Get some Mastic Gum for chewing (I buy mine from Greece) and start chewing

I would suggest you stop EDTA, NAC, Bromelain, etc when you switch and then slowly add them back in.

  • 1500 – 2000 mg of Vitamin B1 per day. 1500 mg is the threshold for improvement. Lower dosages may have no results. – changes should occur with in 7 days, per study
  • 1 l of Gerolsteiner a day (split over meals) – provides easily absorbed minerals and should change microbiota.
  • 15,000-20000 IU of Vitamin D3. This level will cause improvement over a few months

 

At this point, we need to take stock of what symptoms remain. It will likely be time to add additional probiotics (Mutaflor, etc). There probiotics are likely to be killed off by some of the above herbs, so we wait.