Results of CT

Not sure if anyone is following along with my struggles here but I just wanted to log that I took an abdominal CT scan to check for any obvious structural abnormalities in the gut. I put this off for a long time because I am actually timing my ionizing radiation -- November was semi-ok but that still will have given me two xrays and one ct in ONE year. Medical Science also wanted me to swallow a nuke so they could watch my thyroid dispose of it but I declined that one.

In any case...the whole thing was completely normal. I have "mild thickening" at the esophageal junction ( GERD) and the previously-mentioned adrenal adenoma. My mother died of pancreatic cancer and I've been waiting to hear now for years that something was up with my pancreas but apparently nothing is. Biliary, liver, spleen, intestines, all normal.

What isn't normal is that I have "borderline" Lyme disease and three active viral titers -- EBV, CMV and coxsackie. These viral titers are far uglier in number and nature than the Lyme, which is at a very low level. I doubt any standard American Lyme test would have ever found it. The doctor who runs the lab in Germany made the recommendation that I treat the hell out of the viruses and ignore the Lyme at the moment since it's really bringing up the rear in terms of pathology.

I think about this all day. On the one hand I want to treat the Lyme NOW because it scares the crap out of me. LymeWorld is a terrible world, nothing is certain, there is no good information and people rattle on for YEARS about their continued disability because of their Lyme disease and I DO NOT WANT TO BE THAT PERSON. On the other hand --- my immune system seems to be suppressing it. Problem is that while it is suppressing the Lyme it is suppressing my immune system. I believe that's how the body deals with a spirochete. I don't think the Lyme suppresses the immune system; I think the body gets very cagey managing this infection.

But basically I am freaking out. I knew two years ago that something was different -- something was *wrong.* I kept hearing it was menopause or stress or Lack of Faith or whatever but I knew something was *wrong*. Two years ago.

The basis of the recommendation to treat the viruses first has to do with the way that a suppressed immune system loses control of viral replication. So instead of hitting the bacteria with lots of antibiotics you help the immune system beat down the viral load -- then it has some leisure time to deal with the bacterial load. You do this before you are too sick to move, eat, or read a newspaper.

That is the theory. What I'm weighing is whether I can afford to believe it.

I think if you use a thyroid supplement and get your temps to 98.6+ everything will sort itself out.

messtafarian said:

post 111547So instead of hitting the bacteria with lots of antibiotics you help the immune system beat down the viral load -- then it has some leisure time to deal with the bacterial load.

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How do they suggest doing this?

tara said:

post 111560

messtafarian said:

post 111547So instead of hitting the bacteria with lots of antibiotics you help the immune system beat down the viral load -- then it has some leisure time to deal with the bacterial load.

Click to expand...

How do they suggest doing this?

Click to expand...

answersfound said:

post 111548 I think if you use a thyroid supplement and get your temps to 98.6+ everything will sort itself out.

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Thanks for the suggestion but it doesn't work. My temps are high. I am viral. 99's: 98.9, 99.2, 99.8. 100.8 at night. Temps aren't reflecting thyroid, they're showing immune activity. I wish it was a quick jump onto thyroid meds, but this is complex.

tara said:

post 111560

messtafarian said:

post 111547So instead of hitting the bacteria with lots of antibiotics you help the immune system beat down the viral load -- then it has some leisure time to deal with the bacterial load.

Click to expand...

How do they suggest doing this?

Click to expand...

Good question. It depends on who you talk to. Lyme people are all into herbal remedies, of which there are legions sworn by -- Takuna, monolaurin, Transfer Factor, Grapeseed Extract, Olive Leaf, Indigo; Peatworld says Methylene Blue. I'm on the verge of taking like all of them and seeing if I live or die.

messtafarian said:

post 111566 Good question. It depends on who you talk to. Lyme people are all into herbal remedies, of which there are legions sworn by -- Takuna, monolaurin, Transfer Factor, Grapeseed Extract, Olive Leaf, Indigo; Peatworld says Methylene Blue. I'm on the verge of taking like all of them and seeing if I live or die.

Click to expand...

If these are the suggestions for Lyme, what are the suggestions for tackling the severe viral load, or for supporting your immune system to be able to tacklethem more effectively? Did the dr from teh testing lab suggest a particular medical approach?
Others here have talked about olive leaf as a natural antibiotic - is it supposed to be anti-viral or imune supportive as well?

German doctor had a very specific set of herbal protocols. It's not Peaty simply because it's basically a drug protocol in herbal form. However, yes: what he was suggesting/prescribing were antiviral medications that were herbal in origin.

Now understand that in western medicine there is *no cure* for any of the viruses I named. In western medicine, most commercial antiviral medications have failed miserably or presented with unacceptable side effects such as you have no liver anymore.

Herbal medicine seems to have a better track record of at least not killing people along with the virus. His recommendation: an herb called Takuna for coxsackie virus, which pharmaceutically has "no cure."

Also for coxsackie is a TCM preparation called oxymatrine. This has shown a cure rate of 50 percent for chronic coxsackie virus, which doesn't seem very impressive unless you compare it against pharmaceutical viral meds which have a cure rate of Zero.

Epstein Barr and CMV seem to be susceptible also to the above but also *monolaurin* or Lauricidin, which is, guess what, a substance found in abundance in coconut oil. Epstein Barr is a lot easier to manage than coxsackie because there are basic nutritional boosts you can take to encourage your immune system to deal with it. Coxsackie is different. Coxsackie sucks.

Coxsackie is not susceptible to monolaurin. It is a son of a b**** and there is very little that can really put a dent in it outside the few preparations from TCM or the native immune system which I do not have at the moment.

The real issue with Lyme is that it hijacks the immune system. It is not a very fast-growing or aggressive bacteria on its own but its ability to continue to evade native immunity starts to confuse native immunity, and opportunistic infections like coxsackie will push into the gap.

I think Haidut said viruses feed off iron and tryptophan so attacking that wit Cyproheptadine for a while could help and donate blood

in this situation it seems like the approach i would take is to learn as much as possible....not about treatments really.....but as much as possible about the viruses themselves and immune system and other systems which play into that. i know you're already doing this, it seems. Then this will give you a very firm footing and confidence when you are bombarded with all the treatment options. And your personal learning process may even reveal a method of treatment that others can't perceive right now. you may already be doing this as well...but journaling your daily experience with life and how you function and how you sleep what you eat etc....not necessarily in great detail....this will also give you a firm footing and confidence in the process knowing that you are able to perceive your situation accurately....that you can't really forget or block things out or leave things unaccounted for....because it will all be documented right there. I understand the fear of becoming one of those patients which, as you say, "rattles on" for years going from one treatment to the next and never really seeming to grow in understanding (or healing).....i think the above things will bring this simplicity and efficiency and relative peace of mind you are seeking.

Have you had any opinion from Peat on these specific viruses, esp. the difficult coxsackie? If you are really lucky, he might know something about that, and also about the proposed herbs.

Hi Mess,

Could you PM me the German lab? My daughter had an undiagnosed high fever a year ago, which resolved immediately after doxycycline. All tick tests proved negative.

I'm also struggling with a "untreatable" bug in my SI -- methanogen. I've been on 30mg MB for nearly a month with no change in bloating, but it helps me function. I added stablized allicin, with no change. My GI also wants me swallow nuke, but I refused. Now he wants me to do smarpill, but the size of it is enormous. I had an abdominal CT earlier this year ordered by my internist; he needs to look at it.

I've been following your log/posts and admire your courage.

Nicholas said:

in this situation it seems like the approach i would take is to learn as much as possible....not about treatments really.....but as much as possible about the viruses themselves and immune system and other systems which play into that. i know you're already doing this, it seems. Then this will give you a very firm footing and confidence when you are bombarded with all the treatment options. And your personal learning process may even reveal a method of treatment that others can't perceive right now. you may already be doing this as well...but journaling your daily experience with life and how you function and how you sleep what you eat etc....not necessarily in great detail....this will also give you a firm footing and confidence in the process knowing that you are able to perceive your situation accurately....that you can't really forget or block things out or leave things unaccounted for....because it will all be documented right there. I understand the fear of becoming one of those patients which, as you say, "rattles on" for years going from one treatment to the next and never really seeming to grow in understanding (or healing).....i think the above things will bring this simplicity and efficiency and relative peace of mind you are seeking.

Click to expand...

It's a murky business. Even the words "immune system" are vague like the word "inflammation" is vague. B cells, T cells, proteins -- viruses that infect bacteria and bacteria that infect viruses, intracellular viruses -- I'm not sure any doctor really understands how antiviral medications work because we don't understand that entire microscopic world very well at all.

I believe what Peat is saying when he talks about autoimmunity. My ANA is positive and there are very low levels of random antibodies showing up in my blood. It has to reflect damage, not some other idea about "attacking yourself."Basically, for some reason Lyme, which is just a bacterial infection, has the ability to unravel the entire apparatus that keeps the whole system under control. So it's not exactly "Lyme Disease" that creates the disease, it's a state of continued immune disorganization. And viruses are worrisome because if your native defenses are broken these things just keep swimming around wrecking stuff at a cellular level.

And this is how people get so sick. Not from Lyme, but from the *rest* of what goes wrong. "End stage" Lyme isn't a state of being overrun by bugs. It's a state where you can't stay alive without going to the hospital once a week for IVIG.

I haven't known about this for long -- I mean I did "know" but I needed to see it on a lab test or I would have continued to doubt myself. Now that I do know it gives me this sense of altered reality. I'm not protected anymore.

People are starting to say that a massive number of people are infected with Lyme, but somehow they never get sick. Lyme does not replicate very fast at all and I think part of the reason is because it's a very complex little animal. It's got an immense repertoire of survival mechanisms. If your own system is keeping this replication in check then even with inoculation you may never realize you have it. We have lots of low level bacteria -- in the gut for example -- that would probably kill us if it replicated uncontrollably, but that doesn't happen that often. When it does you end up in the hospital with bacteremia.

But I'm still upset. I managed to live a long time without ever getting near a thing like AIDS or syphilis, and now here comes along this effing thing that, they say, will never be eradicated entirely from my body. It's a shocker. I think I would have rather heard I had some kind of cancer.

answersfound said:

post 111575 I think Haidut said viruses feed off iron and tryptophan so attacking that wit Cyproheptadine for a while could help and donate blood

Click to expand...

Interesting about the iron. I've been anemic for a long time -- once I got my gallbladder out my iron levels started to shoot up to near normal. I took those labs right after the operation, and I wonder now if that was why the test showed such high viral loads. Staying anemic might have kept the viruses in check.

sunmountain said:

post 111615 Hi Mess,

Could you PM me the German lab? My daughter had an undiagnosed high fever a year ago, which resolved immediately after doxycycline. All tick tests proved negative.

I'm also struggling with a "untreatable" bug in my SI -- methanogen. I've been on 30mg MB for nearly a month with no change in bloating, but it helps me function. I added stablized allicin, with no change. My GI also wants me swallow nuke, but I refused. Now he wants me to do smarpill, but the size of it is enormous. I had an abdominal CT earlier this year ordered by my internist; he needs to look at it.

I've been following your log/posts and admire your courage.

Click to expand...

Hi sunmountain -- this man's practice is no secret. He doesn't have to stay under wraps or anything like Lyme doctors in the US apparently do. You can contact Armin Labs at http://www.arminlabs.com/en through their contact form. They'll mail you a test kit you can take anywhere ( I actually just went to the hospital lab near my house) to get the blood drawn. Blood draw instructions are included for the phlebotomist but they're not at all complicated. You have to set up a pickup through DHL medical courier using their (Armin's) DHL account, and when it's ready call DHL to tell them to come get it.

I sent mine on a Monday and it was received in Germany 24 hours later. I got my results in a week.

It's *really* expensive if you order everything they offer. In my case I didn't care how much it cost. No lab in the US uses this method of testing and they never would have found it. All this mystery could have continued for me for the rest of my life.

ETA: I wonder if you've tried this combination Chris Kesser talks about here?

http://chriskresser.com/sibo-and-methan ... onnection/

messtafarian said:

post 111633 it's a state of continued immune disorganization. And viruses are worrisome because if your native defenses are broken these things just keep swimming around wrecking stuff at a cellular level.

Click to expand...

that seems like good info. to run with.

messtafarian said:

post 111633 I'm not sure any doctor really understands how antiviral medications work because we don't understand that entire microscopic world very well at all.

Click to expand...

even with something as "complex" and "enigmatic" as you have, you still know yourself better. You knew you had this, basically, for many years.
Do you believe there is a purpose for you receiving this trial?

Nicholas said:

post 111638

messtafarian said:

post 111633 it's a state of continued immune disorganization. And viruses are worrisome because if your native defenses are broken these things just keep swimming around wrecking stuff at a cellular level.

Click to expand...

that seems like good info. to run with.

messtafarian said:

post 111633 I'm not sure any doctor really understands how antiviral medications work because we don't understand that entire microscopic world very well at all.

Click to expand...

even with something as "complex" and "enigmatic" as you have, you still know yourself better. You knew you had this, basically, for many years.
Do you believe there is a purpose for you receiving this trial?

Click to expand...

I haven't been offered treatment, just a list of things to buy and instructions how to take them. I am going to see an "LLMD" in January who might offer me antibiotics.

I don't think I've had this for many years. I think I got it two years ago -- actually the summer of 2013 when I contracted what I thought was a spider bite. I asked people to look at it, they said it was a spider bite and there was no Lyme where I lived at the time.

But I haven't felt the same since that day. And every once in a while, vaguely, when some other weird symptom was starting to surface, I would think back to that spider bite.

:). Hi narouz:

The only stool profiles I've had have been through my regular doctor; they just look for common pathogens. All negative; I took the same test twice.

I bet if there was a GI lab that tested for viruses I'd come up positive but I don't think there is a place like that.

What about the "vit C to bowel tolerance" protocol a la Linus Pauling, while making sure you are well nourished in all micronutrients?

You know I did try that early in the year when I did not really know what I was doing. I took outrageous amounts of vitamin c for three days -- the fourth day I was intensely ill -- fever, sweats, delirium and a visit to the hospital where they pronounced I had a "fever of unknown origin." I knew I had flushed a virus out of hiding but I had no idea what it was. I also knew I could not afford to try it again unsupervised.

I might try it again. I'm pinning a little unreasonable hope on this "LLMD".