Multiple Chronic Active infections - Lyme, EBV, Chlamydophila pneumonia, with a side of porphyria?

[Merida]

I finally saw a naturopath and got tested for all of the above organisms, as well as Mycoplasma and HHV6. Well, I have had them all. He used standard labs - Lab Corp for Lyme and Quest for the rest. Yes, I was bitten by a tick in 2010 in Virginia, and I have chronic lyme according to the CDC guidelines - 5 Borellia- specific IgG bands by Western Blot. No doubt about the C. pneumoniae or EBV either. Plus, high IGG to Cytomegalovirus and to Mycoplasma pneumoniae and to HHV6. But appreciate that these last 3 results do not differentiate between past and active infection.

Then last week I had a very dark red brown urine, which accumulated a thick sediment upon refrigeration. Tests are in - liver / kidneys are fine, normal urinalysis, blood work, no gout. Ha ! But when I saw photos of porphyria urine today - a perfect match. Back to doc.
Have read that porphyria is very common with Chlamydophila pneumoniae infection - that this organism may precipitate an attack in people with genetic profile, or the organism itself may cause a disruption in heme formation. Think porphyria may be important. Can be difficult to diagnose.

Anyone else have these multiple active infections? Any possible porphyria people out there?

 

[Cort]

I finally saw a naturopath and got tested for all of the above organisms, as well as Mycoplasma and HHV6. Well, I have had them all. He used standard labs - Lab Corp for Lyme and Quest for the rest. Yes, I was bitten by a tick in 2010 in Virginia, and I have chronic lyme according to the CDC guidelines - 5 Borellia- specific IgG bands by Western Blot. No doubt about the C. pneumoniae or EBV either. Plus, high IGG to Cytomegalovirus and to Mycoplasma pneumoniae and to HHV6. But appreciate that these last 3 results do not differentiate between past and active infection.

Then last week I had a very dark red brown urine, which accumulated a thick sediment upon refrigeration. Tests are in - liver / kidneys are fine, normal urinalysis, blood work, no gout. Ha ! But when I saw photos of porphyria urine today - a perfect match. Back to doc.
Have read that porphyria is very common with Chlamydophila pneumoniae infection - that this organism may precipitate an attack in people with genetic profile, or the organism itself may cause a disruption in heme formation. Think porphyria may be important. Can be difficult to diagnose.

Anyone else have these multiple active infections? Any possible porphyria people out there?

Wow....I didn't know that porphyria was associated with bacteria infections..

What is next? Lots of antibiotics and for how long?

 

[Issie]

http://www.healthrising.org/blog/20...-kynurenine-pathway-in-fibromalgia-and-mecfs/
@Merida
You may find this interesting.

 

[Merida]

@Issie
Thanks so much for the link. VERY INTERESTING. I am reading that many cases Chlamydophilia pneumoniae and Lyme are associated with porphyria attacks. There is a group at Vanderbilt Univ, Charles Stratton, MD and colleagues, who are interested in this phenomenon. They saw that porphyria is so common with C. pneumonia that they treat it as well.

There is a great site : Cpnhelp.org I had NO idea I had abnormal immunoglobulins to any of these organisms. There is discussion that environmental sensitivity ( to drugs, fumes, foods, etc etc) may in fact be due to underlying porphyria. And from your article it seems possible that certain organisms can not only cause neuroinflammation but also disrupt basic metabolic pathways - like the heme pathway ???????

@Cort I never would have arrived at porphyria had it not been for 2 very dark red-brown urines, which I could have easily missed. Also, I am reading that the production of hemoglobin uses a lot of ATP, and that problems ( 'bottlenecks') in the heme pathway can cause a build up of certain products that interfere with ATP production in the mitochondria.

Ha ! I was the structural person !!! I think this could be very important. Abnormalities in the heme pathway are hard to diagnosis. Plus, now I begin to wonder if RhD negative people ( with the lack of certain proteins on the red blood cell surface) may also have alterations in the hemoglobin type or production ??????? I am remembering from support group where 55% of about 16-17 people were Rh D neg.

Onward.

 

[Merida]

Oh, treatment. Don't know yet. They seem to pulse the antibiotics. I am supposed to start with 6 weeks of doxycyline. OMG. My CFS/ infectious disease doc is now testing for the actual DNA of the Lyme organism - to start. Been thinking. What if I conquered these infections years ago but my immune system keeps churning out lots of specific immunoglobins ? And other immune chemicals ? Hmmm. Isn't this what some researchers have been thinking about the B cell situation ? That they are not 'turning off?"

Don't know about this stuff.

 

[Issie]

Doxy, also is used to treat Lyme. Also used for the mold/fungus/protozoa Dr Fry. Found with me.
Issie