Red flags in labs - not sure what's going on.

[Guest]

I don't have a doctor treating me right now and am getting drastically sicker by the month. I can't hardly sleep at all even taking tons of downers but I am severely fatigued, mostly in my brain with chronic migraines. Anyways here are some things I noticed going through recent labs (within the past year):

 

Elevated DNase (224) but normal ASO.

High titers to all: Coxsackie A and B (valtrex did nothing to improve that)

high titers to Myco. Pneumonia (doctor never addressed this)

high titers to parvo

IgG4 - low

IgA2 - low

Basophils - absent

IgG p41 - present (western blot)

IgM P39 - present (western blot)

Very low NK cell count

Low B cells

Low NK cell activity / functioning

B12 - too high (surprising)

 

There's a lot going on with my cytokines but I cannot decipher any of that.

My psych. is referring me to a neurologist who knows about neuro-inflammation so it's just me waiting to see if I am accepted. Also, right now my throat is extremely soar all the time and my mom checked my tonsils and said they were extremely huge and inflamed.

 

Any thoughts on the labs? Thanks.

 

 

[peglem]

The only thing I can address is the high B12. I'm assuming that's serum. Frequently, high serum B12 indicates your body is not using the B12 (taking it up into cells)- so it just circulates in the blood until it is eliminated. Try Methylated B12 (methylcobalamine) and see if that makes a difference. It may help with the brain fog.

[mama2alex]

Those two Western Blot bands would be considered positive for Lyme by Igenex. See this explanation of the bands: http://www.anapsid.org/lyme/wb.html

 

You'd mentioned in a previous post that you've been bitten by ticks in the past, so odds are high that this is at least one of the things you are dealing with. Have you ever been tested for coinfections such as Babesia, Bartonella, Erlichia?

 

Low NK cells is also common with Lyme, but can be due to other issues as well.

 

Beyond that, its obvious your body is dealing with a lot of different infections. You might try working with an integrative LLMD who would know the best order in which to address all of these infections AND know how to suport your body through the process.

 

I can't remember, have you cleaned up your diet - gluten-free, dairy-free, sugar-free, caffeine-free, soy-free, alcohol-free? Any or all of these changes can help. I was having headaches 24 hours a day some years back and eliminating gluten and dairy got rid of my headaches. Every time I "cheated" on my diet, the headaches came back.

 

One other thought - could the "downers" be causing fatigue and hurting more than they are helping? Maybe you could try something more natural for sleep like Melatonin or magnesium? Maybe you've already tried everything else, but I just wanted to mention it.

 

As an adult who's dealt with severe illness at times and been relatively well at other times, I really feel for you and am praying for you to get well.

[tpotter]

Also, sometimes IgG can be elevated, and not IgM (or in the case of strep...AntiDNAseB vs. ASO. Doctors like to presume that DNAseB and/or IgG (in other infections) indicates past infection, but if you read the lab results, it says that it may also indicate current infection. If you've had it a long time, the infection may be chronic, so the only thing that may show up positive at that point is the IgG or the DNAseB. But, this also sounds like it could also be lyme/bartonella, babesia, etc., as lyme is the "great mimicker" (it mimics everything.) And, then there's the high titers for viruses. It sounds like your immune system is out of whack, so you may be sick with a lot of different things...all are working against each other.

 

I am really glad that your psych had the knowledge to refer you to a neurologist who specializes in neuro-inflammation. Also, keep in mind that the psych drugs you are taking may be making things worse.

 

I don't know your financial situation, but I found that I got further with alternative doctors. ART helped us figure out all the different things that are going on. But, a lot of people have also found that homeopathy has helped a lot, and I know it has certainly helped us, as well. PM me if you want more information about what we have tried and let me know where you live, so I can maybe help you find someone who can help you get to the bottom of this. I'm really glad that you're reaching out to all of us on this.

[Kathy4Him]

No ideas but wanted you to know I am going to be praying for you! So sorry you feel so bad, but I am glad you are reaching out to this group too.

[Hopeny]

I think you mentioned you had numerous tick bites. Being that Band 39, a Lyme specific band, is positive it would be good to consider consulting a LLMD. Many of the symptoms you have described are consistent with what others experience with chronic Lyme. This may be why you are not getting well.

[Guest]

Hey guys thanks for the responses, a lot of good info (jotting down).

 

I have seen 2 LLMD's and took antibiotics for some time, but never saw any changes. I ended up getting c-diff so mom got very worried. I can't afford to see another one right now as I'm on disability and the closest one was 4 hours away and very expensive.

 

I do have viral overload and NK problems which is consistent with other CFS (chronic fatigue syndrome) / M.E. patients but right now they don't really have anything new to offer us in way of treatment. I saw 2 very well known CFS specialists, diagnosis was confirmed, but they weren't able to help. Norway has labeled it as auto-immune since accidentally they discovered a chemo drug was fixing people for which they are now doing trials, but this is far off. The thought is infections trigger the immune system to attack the central nervous system which is why they think we all have dysautonomia as well - still, CFS docs really had nothing to offer and are way too expensive (not right).

 

I do live in the woods, so lots of deer and animals out here. But my family doesn't have any health problems, guess that confuses me.

 

Is the searching out the neuro-inflammation thing barking up the wrong tree? It seems like the only tree I have not climbed (seen many doctors) and the article by NYU really intrigued me, I could relate to a lot of it but doesn't account for all the infections unless those are a trigger.............. Maddening! They do however accept my disability insurance but the trip up there would take everything that I have left (physically and emotionally).

 

Thanks for well wishes, certainly need them.

Edited June 18, 2013 by Guest

[EmilyK]

What about treating the myco-p? Do you see an immunologist? We struggle with myco infections here and crushing fatigue and sleep disturbance is one of the symptoms we face.

[Guest]

I should be getting my 23&me results soon, so hopefully that will shed some light. Maybe you all, I'd rather say y'all can help me.

[Guest]

Update: I have mono right now and a tonsil infection, GP put me on abx for tonsils but told me to rest for mono. I'm in a really bad place as the last time I got mono, I ended up bedridden (my main diagnosis is CFS - or M.E. - chronic fatigue syndrome). I don't leave the house often so I'm confused as to how I got mono!? Any tips?

 

I can't really leave my bed much, fatigue and sleepiness much worse, ocd uncontrollable, and it never feels like I've slept at all now.

 

Mono is common in CFS and often times reoccurring but nobody knows what to do with it. I wonder, do the viruses and infections trigger what is wrong with our immune systems, OR are our immune systems so down and out that we get infections? Which doesn't explain auto-immunity which is a result of over-active immune system!

[PowPow]

I do not think autoimmunity is necessarily an "over-active", just malfunctioning immune system.

I think your question about the virus causing the problem or settling in because of the problem is a 20k question!

Ophelia, I hope you find some help and answers soon. Are you in the US?

[Guest]

I do not think autoimmunity is necessarily an "over-active", just malfunctioning immune system.

I think your question about the virus causing the problem or settling in because of the problem is a 20k question!

Ophelia, I hope you find some help and answers soon. Are you in the US?

Yes I'm in the southern U.S. Thanks. Is a good question!

[LNN]

When my DD had epstein-barr (a precursor to mono), l-lysine 600mg BID is what finally got rid of it. She started to feel better within a few days and was back to 80% within 3 weeks. L-lysine is an amino acid, available at health food stores, amazon, etc. It may be worth a try.

[JuliaFaith]

New best product from vit. store is Manuka honey! Its anti-bacterial, anti-fungal, antiviral. Got 15+ or higher for $45. Mixed 2 tsp. in 4 oz. distilled water. Can gargle in throat, put in tea, use for ear drops, nose drops (once a week after first 2days). We are so impressed with this.

 

Would be awesome on your poor throat right now!

 

take care.

[Guest]

When my DD had epstein-barr (a precursor to mono), l-lysine 600mg BID is what finally got rid of it. She started to feel better within a few days and was back to 80% within 3 weeks. L-lysine is an amino acid, available at health food stores, amazon, etc. It may be worth a try.

Great suggestion, I have some here at home.

 

@juliafaith Good suggestion, thanks!