Home › Forums › General Discussion › CPn, HHV6, EBV, Mycoplasma Pn, low Vit D& Ultra Low NK Cells
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February 26, 2011 at 7:14 pm #305359Cheryl FKeymaster
Hello all:
I have posted several times in the past years that three of four of my family members have health problems. Because of our family’s propensity to be ill, I took my youngest daughter to our AP doctor who ran the full array of tests that the rest of us have had. The results are…. her labs look worse than any of the family.
She has very high IgG and IgA for EBV, HHV6, CpN, Myco Pn
She has a vit D of 23 (my doctor was freaking out that mine was 37, Jess’s was 42)
Her Natural Killer Cell count was 2 (two) Normal range is listed as 8 – 170. The lab report stated that this low value makes one susceptable to viral infections and malignancies.So, it has been five years since this all started with Jess, the difference is, Jess had clear symptoms, Claire does not clearly have symptoms. She is pretty low energy and sometimes suffers what I might call mental fatigue, but she is 16 so how would one define what is normal. She always has energy to “go” when her friends call.
I have spent the better part of the last two days on the internet trying to learn about what we might do to address these issues that have not yet manifested into symptoms, but I am not one to wait and see.
I have already started her on high doses of Vit D3. She started on Astaxanthin about a month ago. Any ideas on things I should be looking into would be greatly appriciated.
I read the post regarding the Stanford CFS website and that was very informational and quite timely for me.
Thanks for any input. I don’t think I could survive another daughter becoming really ill.
Cheryl
February 26, 2011 at 10:59 pm #355600Todd WIParticipantHi Cheryl,
I’m so sorry to hear about your concerns for your daughter. I suspect there is very little experience here with being as far out in front of this as you are. What did your doctor recommend?
A saying I run into a lot when reading about test values is to treat the patient, not the number. I know it isn’t particularly comforting, but I doubt anyone can tell you that the numbers are predictive of anything, except possibly the Vit D number and that depends on who you believe. Otherwise, is there really anything here to “treat”? Low energy for a teenager isn’t much of a symptom. By traditional measures, she doesn’t sound “sick”. That’s a good thing, she doesn’t have any symptoms!!!!
So where does that leave you other than completely freaked out that the tests may mean she’s headed down some deep dark path? I guess I’d suggest you should look at things that are preventative in nature. Convince her to eat healthy, or as healthy as you can get a teenager to eat. Get the Vit D level up, if you are so inclined. Maybe consider NAC as a preventative for CPN? Watch for symptoms, and try not to worry too much.
Todd
February 27, 2011 at 1:12 am #355601mary77ParticipantCheryl,
I have tested high for EBV, HHV6, Myco. Pn, CPn along with other viruses. Also, Lyme and babesia. My physician claims we should be calling this CMI…chronic multiple infections. I have been ill for 28 years.My diagnosis and treatment came after 10 years of illness.
I currently (and for 3+) years am taking Benicar, minocin, clindamycin and zithromax. All but the Benicar are low, pulsed doses. The Benicar I take twice/day at 10 mgs.
My tests currently show that the CPn is the “last” major infection I am dealing with…I still have occasional Herx symptoms but overall feel I have made remarkable improvements. In the past year, I did stop the minocin for about 6 months. I began a decline fairly soon after stopping it and it took awhile to improve once I started back on it.
Just thought I would add my 2 cents! Good luck with your family and their challenging health issues.
Mary
February 27, 2011 at 1:29 am #355602Cheryl FKeymasterTodd and Mary, thank you for your replies.
Todd, I completely agree with all you said, I am not that worried, but, if there is some protocol that might address the low immune function as well as the apparent chronic infections (viral & bacterial) then I might be inclide to start some methods of immune function enhancement and anti-infection protocol. She eats fairly well, getting enough good stuff, BUT, along with the good stuff eats/drinks too much bad stuff (candy and soda YIKES! I Know, but what can I say?)
Mary, is the benicar part of MP or outside of MP? The AP doctor we see does use benicar sometimes, but not a part of MP. He also recommends high dose vitamin D3.
She has not seen the doctor since the labs came back, her appointment is in mid-April. I just got a copy of the labs when I was in for my appointment.
Again, thank you both for your replies.
Cheryl
February 27, 2011 at 2:27 am #355603lynnie_sydneyParticipantCheryl – this must be very concerning for you. As Todd says, there is nothing overt here right now to treat per se, but it certainly seems like the immune system has been/is compromised on a number of different levels. In your diligent searching for answers, you may like to have a look at this presentation (Lynne G. provided the link a few weeks back). I was immensely impressed with it and have further looked into Dr Hedberg’s work/presentations since then.
http://www.hawthornuniversity.org/UnderstandingAutoimmuneDiseasewithDrNikolasHedberg.html
Given that 70% of the immune system is in the GI Tract, it makes a great deal of sense to me to look at this as a focal point. Not sure how this will fly with a young daughter who probably wants to eat and drink what her peers are eating and drinking 😉 , but there might be a few things in here which resonate with you (and perhaps her at some future point). Am also pasting in the link to Hedberg’s views on Vitamin D. http://drhedberg.com/blog/wp-content/resources/VitaminD.pdf. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)February 27, 2011 at 3:25 am #355604KrysParticipantDear Cheryl,
I’m sorry for this additional worry, on top of all the health problems your family has been suffering from.
As you have been longer into recovery than me, your knowledge of supplements is vaster.
I just keep wondering, with all the members of your family being affected, if it’s possible that there is something with the house you live in? You know, like the “sick building syndrome”? Have you checked for hidden molds? They do jeopardize the immune system big time, especially if you have a genetic marker making your body not recognize that it is an unwelcome intruder (26% of people have this marker and therefore their system does not eliminate the molds they have ever encountered)?
Another possible solution is checking and rectifying geopathic stress (harmful radiation, among other sources from underground water veins, strong electromagnetic power fields). Sometimes it is enough to slightly move the bed for things to improve.
see:
Geopathic Stress – “The Hidden Cause of Disease” by Terri L. SaundersI agree with you that being proactive is the best shot. Everybody is different and resonates with different solutions, so I can only say what I would do myself. Even though there are no symptoms, knowing that there are viral infections present, I would do something about it. I’m rather partial to herbs, so I myself would start taking antimicrobial herbs and/or homeopathic solutions for getting rid of those pathogens and for strengthening the immune system, detoxification organs and also consider herbs for strengthening the nervous system because it is always affected by the pathogen load. If full diet is not an option, at least eliminating sugar, substituting it with raw honey and introducing even a small amount of daily raw juice from organic veggies (carrot with apple and a bit of beet is great). I would try to substitute soda for elderberry+pomegranate+honey tea (with occasional addition of a little juice of her choice + a slice of lemon or orange).
Some immune enhancing herbs: Astragalus, Cat’s Claw, Cordyceps, Echinacea (short term only), Garlic, Ginseng, Larix, Licorice, Maitake, Pau D’arco, Reishi, Schisandra, Shiitake, Siberian Ginseng, additionally: Red Clover, Propolis
For infections: Bayberry, Echinacea (again: 2 weeks only, esp. in flu time), Garlic (available in softgell, no smell), Goldenseal, GSE, Lemon Grass, Lomatium, Myrrh, Neem, Olive Leaf, Oregano Oil, Osha, Pau D’Arco, Usnea
There are many many more.
At the very least I would take the herbs for enhancing the immune system. You can but them in bulk, you can make your own capsules: there are no fillers this way!
Many warm wishes to you and your family, KrysFebruary 27, 2011 at 4:06 am #355605mary77ParticipantCheryl,
The dose of benicar I take is what my Dr. recommends. I tried the high dose benicar and had a strange response of very HIGH blood pressure that sent me to an ER. I do think benicar has some good effects on the immune system but am wary of higher doses in me. We all react differently to meds. So I am not on the MP, but I do believe the MP is capable of helping to restore the immune system.Personally, I am not convinced that high doses of Vit. D are good for anyone. The people on the MP seem to benefit by keeping their consumption of Vit. D to low levels. It is a “hormone”, not truly a “vitamin”. In the past, I became much worse when taking a calcium supplement that had very high levels of Vit. D. When I discontinued it, my health improved.
I am also very hesitant to take any “immune enhancing or modulating” products, including homeopathic or herbal. The interaction of substances with our immune systems is really not well understood. So for me, the simpler the better.
Mary
February 27, 2011 at 6:25 am #355606lynnie_sydneyParticipantCheryl – a couple more thoughts. As CPn is in Claire’s pathogen load I agree with Todd that N-AC may be a good supplement to consider – see Wheldon’s protocol re N-AC at the cpn.org site. I have to say that I noticed a marked increase in my energy levels within 2 days of adding 600mg N-AC bid to my regime recently (and chronic CPn is in my pathogen load as well as past infection with EBV). Also, given all the recent additional research into mino’s immunomodulating effects, I wonder if it is worth discussing with your doc about a therapeutic probe with mino. Given that teenagers take it longterm for acne, that should not be too much of a stretch. Lynnie
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog) -
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