How to explain the "Massive Inflammation" Theory for ME/CFIDS to a Doctor

TheMoonIsBlue

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I apologize in advance for this vague question......is there any way to explain to a DOCTOR the theory (which I believe is true) that in ME/CFIDS, all the viruses and infections in the CNS, etc., basically create a "Massive Inflammation" in the body/brain?

Doctors will run the basic Sed Rate and C-reactive protein....which is always normal (actually LOW for me) so they will think-no inflammation.

What about Inflammation in our BRAINS??

Is there any ways to broach this subject without sounding nuts? Are there any links anyone can provide that explain this theory at all?

Thanks everyone
 

lucy

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There was a thread somewhere in this forum about tests and communication with your doctor, including a video of a CFS doctor (was it Klimas?) speaking about how to approach your doctor, such as asking the doctor if he is interested in hearing the theory you have.

The inflammation theory makes a lot of sense to me personally, because after I excluded inflammatory products from my nutrition I improved a lot. The downside is that there is not much I can eat, basically meat and fish and vegs.

The question is what will happen if they finally detect the inflammation? Will you get NSAIDs prescribed, and are they of any good?

From my experience, the doctor gets a bit serious after 1 yr of visits every month, and only if you tell them about neuro problems - like for example changes in vision, slow or jumpy focus of the eye, different sized pupils, hypnic jerks during day, and memory problems such as forgetting where you were going in the city, and most probably only if you are of the age when you are not supposed to have such problems.
 

Emootje

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Because the traditional inflammation marker (CRP, ESR) only response to a limited number of cytokines, I begin to look for alternative broad spectrum inflammation markers. I found two useful alternative inflammation markers which are indicative of an inflammation:
  • Zinc protoporphyrin (ZPP)

  • Carbon monoxide (CO)
Both tests were elevated despite my low CRP and low ESR.

* Zinc protoporphyrin (ZPP)

zzp.JPG

http://bloodjournal.hematologylibrary.org/cgi/reprint/81/5/1200.pdf

* Carbon monoxide (CO)

COHb as a Marker
Endogenous production of CO was first reported in the mid 20th century, but it has been a known
poison since Claude Bernard first noted its high affinity for hemoglobin a century earlier. Moderate
endogenous increases in COHb levels (0.82 percent) have been reported in critically ill patients
and clinical interest has grown rapidly as CO production has been proposed to induce excessive
vascular relaxation, and hence a fall in blood pressure. The mechanism behind this reaction is heme
oxygenase (HO), the initial enzyme in heme metabolism. HO produces CO during breakdown of
heme molecules primarily in the liver and spleen. It is well established that metabolism of heme via
heme oxidase results in production of one molecule of CO for each molecule of heme destroyed.
Recent data suggest that CO is also produced in the lungs. A number of stress-associated agents
induce the expression of heme oxygenase, including heavy metals, hyperthermia, hyperoxia, hypoxia,
heat shock, endotoxin, hydrogen peroxide, cytokines, ultraviolet radiation and nitric oxide, producing CO.

http://www.masimo.fr/Rainbow/pdf/LAB4427B - spco acute.pdf

A disadvantage of these tests is that they are not specific and not always generally available.

I hope you find this useful.
Emootje
 

Emootje

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I forgot to mention my blood results

Zinc protoporphyrin (zpp):
0,30 mmol/mol Hb (< 0,22 mmol/mol Hb)
0,38 mmol/mol Hb (< 0,22 mmol/mol Hb)
Venous carboxyhemoglobin (co):
3,1% (<1,5%)
2,7% (<1,5%)
2,1% (<1,5%)