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Avatar universal

Is there any hope of finding a cause/cure

Any suggestions from the forum would be greatful--The following is my history sorry so long--Thanks to all.


47, married, , weekend beer drinker(not so much anymore), non smoker  from Jan 07
Height/Weight: 6 FT/205 pounds
Blood pressure 130/86 On 2-13-08
Body temperature (digital thermometer in Mouth) 2-25-09 morning: 97.6, evening:97.9-- 3-11-09—97.2—Morning---evening 97.6

Current symptoms: fatigue, non-refreshing sleep, feeling cold (not as warm as used to be), back of the head numbness (Ice Cream Brain Freeze),Occupital) numbness on cheeks and jaw area and cheeks, lightheadedness, problems with balance, brain fog, minor chest and abdominal pains That seemed to move around from side to side and center Mostly dull pain But minor), constipation - Went from going daily to every third day or so--Not as much product when I do go.  Mouth Ulcers on tongue and swollen-Lack of appetite—don’t eat as much but gaining weight.

In 2001 chest pain, got Prevacid, then stopped it (Dec 2001), no symptoms’ after that. Colonoscopy/Endoscopy showed Acid Reflux--Otherwise Normal according to Gastro

First week in Dec 07 went to business trip to San.Antonio., worried about brother's cancer, but was in good health. Tuesday night had scallops, pods, and Cole Slaw and Bread, fries, ketchup, 12 beers, and short whiskey. No symptoms in the evening went to bed, slept ok, in the morning felt tired, lightheaded, brain fog, no appetite, so eating nothing except few orange pieces. Took 2 aspirins in afternoon.

Wed evening, lying, watching TV, suddenly (like someone flipped a switch) experienced burning pain behind the breastbone, chills, back of the head numbing and what felt like an Ice Cream brain freeze, and lightheadedness and brain fog continued.

Thursday went home, and to clinic, EKG normal, got Prevacide and Meclizine , that reduced chest pain, but not chills, brain fog, and lightheadedness.

Next days spent in bed, profound fatigue, lasted Jan-May. May -Present Moderate fatigue, non-refreshing sleep, and feeling cold, but no fever still continuing.

At this time (Jan 08) Primary doc did Complete Labs, and found nothing but elevatedEBV_ EBNA IgG 560, and gave some sinus sprays.

During summer months, constipation started. Had at least one bowel movement with blood.

Jan 4th 09 Both arms right below the elbow have started hurting kind of like a throbbing pain. Had just finished Vit D pills

February 09: cancer sores, rash on forearms, dry skin (All Over Body with Red Dots)

March 09: dropped Xanax and Lyrica, started multivitamins with iron.

TESTS:  

12/08/08
EBNA IgG 560
LDL Cholesterol (135)

  
Low normal vit B12--312
Low Ca (7.2) Nov 08

Nov 08
Antiprteinase (PR-3) = 6.4 (norm = 0.0-3.5)  

MAY 08
Sed Rate 3   May 2008
Sed Rate 2   Feb 2009  

10th JUN 08
Chest X-ray calcified granulomas
C-spine Impression: "Neural Foraminal caliber is low normal or mildly narrowed throughout the cervical spine. This appears to be the result on congenital factors".

JULY 08
CMV, IgG (27.4)
Toxoplasma gondii negative

SEPT 08
HHV-6 IgG = 1.80,  (IgM norm < 1.40)

Feb 09-
Parvo Virus B19=IgG 5.3  High

15th OCT 08
Started Topiramate (Topamax) 0.25mg, and Alprazolam (Xanax) 0.25 what helped a little with facial numbness


Dec 3rd 08
TSH  1.4
PTH 22
Vit D 25-OH =9.5  02-02-09-24.0  Scale 30-100
Mycoplasma pneumoniae
Arsenic,Mercury, Lead negative

10th DEC 08
EBV Nuclear Antigen (EBNA)    IgG     560.0   U/ML (Neg /=22.0)
EBV Early AG IgG <5.0 (Neg /=11.0)
EBV VCA IgG = 18.1 (Neg /=22.0)
EBV VCA IgM  <10.0 (Neg/=44.0)


Lyme total antibodies Neg (Elisa Test) July 08
-------------------------------------------------------------------------
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Other Tests:

- Blood Test-X 5   CBC, Comprehensive Metabolic Panel, Lipid, PSA, TSH, Lyme, HEP Panel, HIV Panel, Rheumatoid Arth. Factor, Sedimentation Rate-Westergren,  EBV Panel, B-12, Alpha Fetoprotein Serum, H. Pylori. Results:  With exception of EBV numbers and up and down Cholesterol LDL sometimes a little high--- ALL NORMAL
- XRAYS and CT SCANS--  MRI    Brain( Normal ) and C-Spine (see results under other)
- CT Scan Heart and Abdominal ---All Normal
- Chest X-ray X 2   One remarked a few calcified granulomas on X-ray 7-10-08 are present the other listed Brocades otherwise No acute Cardio disease identified.
- Colonoscopy and Endoscopy—Acid Reflux No other problems identified
- ENT exam- All Normal  Debate between Nuero and ENT On Dx Of Vestibular Neuritis
- Full Cardio Work-up:  Echo and CT scan, Carotid Artery Ultrasound- All Normal
- C-spine Impression: Neural Foraminal caliber is low normal or mildly narrowed throughout the cervical spine. This appears to be the result on congenital factors as I see no evidence of facet or uncovertebral hypertrophy.  Disc morphology is well maintained, as is spinal canal diameter.  

ANCA Panel:
Antimyeloperoxidase (MPO) <9.0  (norm =  0.0-9.0)
Antiproteinase 3 (PR-3) =  6.4(n= 0.0-3.5)
Cytoplasmic (C-ANCA)  <1.20  NEG
Perinuclear (P-ANCA) <1.20 NEG
________________________________________________________________________________________________

CURRENT MEDICATIONS:

Prevacid 30mg, from Dec 07
Multivitamin with iron
Occasional Aspirins
Plume fruit juice
------------------------------------------------------

OTHER MEDS, DROPPED:

Some natural meds by Dr. Jernigan’s Borrelogen, Nutrametrix-OPC, Fish Oil Tablets
Alprazolam (XANAX) 0.25mg,
Topiramate (TOPAMAX) 0.25mg from Oct15th 08 to Jan 09
Vit D 50000 Units  
Vit B12 After Injections
Dr. Jernigans Protocol...

Doctors--Nuero (2)---Rhemmy--Ifectious Disease--Endo-Primary-

Only Dx--Post Viral syndrome (15 Months Now)






20 Responses
499534 tn?1328704178
What were your most recent B12 and VitD results? I don't see where you had any follow-up tests done after supplementing and doing shots. You sound like you have neuropothy still happening from low B12 level. Also how do you know your on enough Vit D if you haven't had recent tests done? You D level should really be between a 60-70 to be optimal. Your B12 level should be at least above a 600 or higher.
Next question: What did your dr do to treat you for the Parvo Virus??? You have to be treated for this.
Epstein-Barr Virus is bad enough to deal with and takes years to burn itself out. Usually people are sick with it between 5-7 yrs before it burns itself out and goes dormant again.
It would explain a lot of your other symptoms.
Because you are postive for EBV, I would highly suggest you getting tested for Hashimoto's Autoimmune thyroid disease. EVen though your TSH is normal, doesn't mean you are suffering with symptoms already from the hashi's. Most patients are symptomatic long before the blood work shows on thyroid labs.
Lets start with these questions first.
I have a history of EBV, Lymes, Hashimoto's.....there are many many natural protocols out there to assist you as well.
Avatar universal
Thanks for the rapid response--I have had my Vit D level checked again it went from 9.25 to 24.7 after the 50000 mg 4-tablets--I am still on a multi vitimin with D in it.  Also B-12 went from 312 to 600 on last check (Dec08) after two months worth of injections.  On the Parvo question--Everything EBV--CMV--Parvo--Has come back with high IgG numbers but not the abnormal IgM numbers that all docs have said means you have a current infection, So that being the case they all say "You were infected with one of those but not now" NOTHING WE CAN DO--So no help from them they just say post viral (15 months) and ride it out.  Meanwhile my life *****  Thanks Padro  P.S. did get that referral to a Endo he took blood have not got results yet--He was rude and kept asking me why I was there when my last Thyroid labs were normal.
Avatar universal

Thanks to everyone who has replied and/or will reply. Padro has been a member in the EBV forum and other forums searching for answers for a long time now.... his physicians don't seem to have any answers for him.

499534 tn?1328704178
Your Vit D level is still too low....should be at least a 60. Being on a multi with Vit D is not enough and you are probably on your way to being deficient again.
Second thing.....B12....if you had injections built up over a 2 month period, you should still be getting them usually once a month. They usually start you at weekly for a month, then bi-weekly the second month, then keep you on monthly indefinately. SO you might be going deficient on that again too.....especially with the neuropathy going on.
Both of these deficiencies are ongoing absorption issues and aren't resolved short term and forgotten.....they have to be constantly maintained to Keep your levels normal.
My suggestion is to take higher amount of D3 and get back on B12 shots. I give mine to myself. I get my B12 from Canandian pharmacy without script. You don't need it as canada treats it as only a vitamin.
There are some new anti viral treatments out there....natural. One that is having success is a product with monolaurin in it. It is a anti-bacterial and viral. Dr Ward Bond is suggesting this to all chronic viral patients. Google it and you will find it online or you can go to healthfood store and get it. You want to make sure you are getting a potent one though. Just because these viruses go dormant doesn't mean they don't affect our bodies and immune systems still. These drs just don't understand that.
It is also critical for you to detox your major body systems and then support them with proper food and nutritional supplements.
Avatar universal
Thanks for the help--Laura is there mo info on the Anti-viral Treatments such as where to get and with/without Rx--Also will TRY to get Primary to recheck b-12 when I see him again in May---Thanks Deep for the Info--will be reviewing shortly.
Avatar universal
Thanks to all for the help--still on the hunt
499534 tn?1328704178
I think the first step you should take is to do a complete detox....very slowly for 6 mos to a year. Change diet completely. Pathogens and virus have a hard time surviving through detoxes. Find a good holistic doctor in your area. Someone who can muscle test you against whatever you take to make sure your body will accept it.
The anti viral I told you about is over the counter at healthfood stores. But there is a good one on the internet, Lauricidin. This product and company looks pretty good. I got just plain monolaurin from the vitamin shoppe.
Remember....sometimes you have to think outside of the box. I have had great success in beating EBV from detoxing and going to my holistic drs. I also used a really good Green product for a while with all the good greens in it.
523927 tn?1257018704
Detoxing = diet, cleanses, fasting, far infrared sauna, ioncleanse footbath, detox baths, lymphatic massages by a person or machine, and dry skin brushing to name some detox methods. Finding a vibe machine might be good also and possibly even some EMF dampening devices (BioPro).

I concur that detoxing the body is a good way to go. Our bodies accumulate a lot more toxins then previous generations and it is probably a good reason we are seeing all of these pathogens and odd diseases these days. I'm not much of a government conspiracy person, but you never know what might be going on biologically in a secret lab somewhere (I heard Lab 257 is supposed to be a good but scary book about one of those secret labs). There's just a lot of junk out there now to catch.

If you have trouble finding a holistic doctor, then search for an acupuncturist or chiropractor. Both of those professions have doctors that delve into detox protocols and equipment in a natural way. There can be expenses that insurance won't cover, but if you are not getting answers from conventional medicine then holistic might be the way to go.
Avatar universal

The detoxing certainly helped me... although I was doing the pathogen killing treatments, it killed off the bacteria that either caused or contributed to my immune dysfunction. And I've used (with success) Jernigan's formulas for yeast, parasites and allergies and highly recommend. With all of those products, I had detox symptoms... which means I needed them. (I also muscle tested for these products)
Avatar universal
Thanks so much for the Help--Just wish there was one or two Rx to kill off what needs to go
Avatar universal

You know Padro.... I still haven't a clue as to why you aren't being treated for Parvo B19 virus. I just don't it. I often wonder if our pets are getting better healthcare than we are ?
Avatar universal
The reason the Rhemmy told me (he was the first to test for it)  Was the same as EBV and CMV--I have high IgG numbers in all of them--But not the IgM which means present so NOONE will treat me for anything----They all say you have had them but not now.
Avatar universal

But yet they are using antivirals to treat CFS patients. I know one of my options was to take an antiviral, although I have high IgG numbers.

I still don't get it.
Avatar universal
Have not got my Throid Panel back from Endo yet(dont expect much)  But did get his bill today $757.00 counting labs--And he was rude at that--Boy what a deal,  my part about 200.00
Avatar universal
Throid panel normal-except low Testorone total %
499534 tn?1328704178
Have you gotten on any natural anti virals yet? Have you found a naturopath who muscle tests yet?? When all else failed me, my naturopath saved me....he muscle tested me and found which pathogens were affecting me and hurting me......from there we started treating me with natural anti virals and bacterials, etc.
I got tired of waiting around for MD's to ignore and not figure out what was wrong and how to fix.
675347 tn?1365460645
Have a whole week of eating brown rice, all fruits, all vegetables, (anything you like, which suits your digestion, and you're not allergic to) and water (Spring water) If you have to have sweet stuff, eat Manuka honey or if you can't afford that, just eat good quality organic honey from nectar-fed bees (unheated)
You won't be hungry. This diet will support you for a short time like this. See how you feel after this. If you smoke either try to stop, or cut down, If you cannot give up have fewer. Always follow a cigarette with lots of water.
Don't drink caffeine drinks or alcohol, replace with peppermint/spearmint tea, lime flower tea, or camomile tea.

See how you feel after a week.
Avatar universal
Thanks, I may try that diet--I do not smoke gave it up over a year ago when this ride started, thought it would help--Drink about three cups of coffee in the morning and a six pack of beer over the weekend (cannot handle it like I use to)  Laura cannot find a Naturopath in this area the closet one is in Austin--9 hours away--Have not tried a natural anti viral other than some of Jernigans Formulas with no real results
675347 tn?1365460645
Manuka Honey is credited with having many healing properties. I trust the bees, and know they give us very special gifts. It may be that this will help you (?)

I would not take any meds or supplements other than those which are especially prescribed for any medical deficiencies or serious problems you may have. (In which case continue with prescription meds)

Just keep it as simple as possible. Water can help tremendously when there are all sorts of problems!

If you like booze (well, I do too! in moderation!) -try to abstain for that week, because if you do feel a benefit from that it may inspire you to cut down a lot on alcohol. Obviously too much stresses the liver. The liver is at the centre of our health and wellbeing.

Milk Thistle (herbal tea or tincture) is good for liver support, and can actually help the liver to recover from any toxin onslaughts.
675347 tn?1365460645
By the way, a natural anti-viral option is ECHINACEA ANGUSTIFOLIA (tincture is best) Tincture of MYRRH can be good too though tastes extremely bitter!  ASTRAGALUS is also maybe worth a try. That tastes sweeter! It 'supports' the immune responses.

I do not think there should be any side effects with these. But Echinacea is not intended to be taken for very very long periods of time, except on instruction from a Herbalist, and these should not be taken alongside any anti-biotics, or if there is auto-immune disease.
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