Support My Son’s Dream and Grant My Wish!

Click the Facebook Fundraiser Link and read my story or read below. I do not believe I can be more worried. We have gone through so much and still am.

Click below to donate or share or tweet … anything is greatly appreciated!
https://www.facebook.com/donate/163622630886591/

My son is very special and my heart is breaking. The reason this is big problem is my husband supports us because I have multiple chronic illnesses and my youngest son has cerebral palsy. Last year alone we had over $25,000 (which we are still paying off) in medical expenses … I had 2 brain surgeries and was in the hospital for 3 months due to complications.

My son is like my little Angel he helps me daily and assists me with his younger brother and he doesn’t complain ever and he still stays on top of his school work.

He has already completed his AA from a community college. Was on the Dean’s List and was accepted into the Phi Theta Kappa Honor Society. He transferred to a 4-year university, he is a junior and the loans only cover a small portion of the tuition. He is also receiving the Senatorial and Delegate Scholarship which is minimal based on the tuition. We are currently using what little remains he received from scholarships from his community college but it will be depleted within 2 months.

He has always dreamed of being a video game programmer and developer since he was a young child and it is breaking my heart because without some kind of help (a miracle) he may not be able to finish school or continue.

I am asking you not only to support his dream but to answer my prayer for him to complete college. I do not want my conditions to be the thing that disables him from getting his degree. This is breaking my heart!

Anything you can give is so greatly appreciated, more than I can express. Even a share or tweet. Thank you!

 

 

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Trigger Finger … More Painful Than Thought!

I have read numerous articles on trigger finger and none truly express the pain caused by it that is when it is in a flare. I joked for months (laughter is my go to for stress release) about my finger getting stuck and none the less … it is my middle finger effected.

When my trigger finger gets stuck it’s not too bad but over the last few weeks it has been extremely painful even when I do not move it. If I sleep without a splint on my finger at night it is in horrid pain in the morning and then trying to straighten it send shock waves of pain throw my body … I literally jump from the intensity.

I have read for a trigger finger it should be splinted anywhere from 4-8 weeks. Which is not possible for me especially with the normal splints. I have a child with cerebral palsy and having my finger splinted just isn’t logical.

I have however heard that splinting my finger at night does help to an extent especially with the morning episodes of not being able to open / straighten my finger. That has helped tons but the pain throughout the day is yet to be relieved. So I went to the internet for alternative solutions for splinting and I was lucky enough to find rings which are designed to help keep the finger straight but allow me to moving a little more freely which would be more practicable when doing things with my son.

Here’s the link: https://www.etsy.com/shop/Lovethebugs?section_id=14281342

The ones I bought was the Sterling Silver RA Splint – Silver Spiral Splint and the Sterling Silver Boutonniere Splint. These are the ones the recommended by the store owner. I am allergic to most metals in jewelry so he is crafting it to be 100% sterling silver so I do not have a reaction. Right now I am in the process of waiting for him to craft it and ship.

I am hoping for more relief once I receive it. My trigger finger and the pain it causes seems to effect my other fingers which send pain up through the pointer and ring finger when moving it.

I also read that you should splint it but also have anti-inflammatories like advil to help with inflammation.

You may also look into this video (I have not tried this as of yet) but I found it interesting: https://youtu.be/sHXz4GYfOXc

I have noticed most the time homeopathic, supplements, etc seems to help better than most prescribed meds. That is why I am recommending the video and will eventually try.

Another option I read is going to the doctors and having them give steroids injection to help with the inflammation.

Btw I have read that many who do have surgery for trigger finger eventually have it come back so I am not looking into that.

Good luck and big hugs.

 

 

 

Sporadic Blindness???

Sporadic blindness is what I have been facing lately with all my crazy symptoms. I have lost my vision many times over the past month. My neurologist wants to wait until I get the lumbar puncture (LP) done before prescribing anything or to see how to proceed. She is waiting for the LP because my protein has been high on my blood tests so she is checking for multiple sclerosis (MS), ebstein barr virus (EBV) levels and many other things. Currently I am still waiting for the hospital to call to schedule the LP.

As far as the blindness goes, this is what happens, first everything looks extremely shaky (it looks shaky but I am not shaking – so it’s just the vision appearing to be very shaky like everything is moving in a earthquake) then my vision just goes black … nothing but blackness. It has lasted several minutes then the shaky vision returns and then my vision is back to normal.

I have also lost vision in my left eye but it is simply completely blurry where I cannot make anything out but I can see light.

Before I started losing my vision I did experience several episodes where it seemed everything was moving and I was in a earthquake but 100x fold. Much worse then vertigo. My vision was very erratic as if someone was shaky me violently. Not sure if this was a prelude to the blindness which resulted in blackness. It was a very similar feeling I felt before going blind.

I went to a opthamologist but he said the pressure in my eyes were fine and that my symptoms were either caused by my seizures (I have absent seizures) or it’s neurological and that I should speak with my neurologist. Others in various facebook groups suggested I see a neuro-opthamologist.

My question is has anyone experienced any of this? If so please comment or message me. Thank you!

Update 9/2017: Opthmalogist stated sporadic blindness must be neurological. My neurologist said it could be due to seizures or chiari 1 malformation and/or my syrinx.

 

 

 

Lumbar Puncture (LP) … Still Waiting and Still In Massive Pain!

I called my neurologist last week hoping for some form of relief from all this pain and fatigue I am in … I am still bedridden. I can only stay out of bed for tops a half hour at a time then back to bed I go. I need to get out of bed to assist my son with daily activities (he has cerebral palsy) so staying in bed is not an option. My oldest son does help me a lot with my youngest so that is a great relief.

I know I have not written a post for a while, I am still down and out. Right now my neurologist wants to wait until the LP is done to see why my protein is so high. I do have some proteins that are high and/or borderline but a few years ago I had other proteins that were all over the place high/normal/low so she is very curious and is motivated in seeing what is causing it hence why she wants to wait for the results of the LP.

My neurologist does not want to prescribe anything for me until she gets the results from the LP but I am still waiting for the hospital to call to schedule it. I see my neurologist again around July 20th.

My neurologist said she was going to test my CSF for EBV, MS and others things that may be causing the high protein. Years ago when I saw a hemotologist and all my proteins were out of whack he said it was due to inflammation and did not refer me to another doctor or for further testing.

The protein currently high is my alpha-1-globulins and my alpha-2-globulins and beta globulins are at the high end of normal (1 number higher I’d be high). These proteins means the Protein Electrophoresis is abnormal primarily due to the alpha-1-globulins. My sed rate (ERS) is also high. My carbon dioxide level is low. Calculated Osmolality is also low. (In 2012 I had many protein levels high/low which is why my doc wants to look further into a cause)

So your guess is as good as mine.

Here is a document I found on globulins as a reference:

• Globulins

Just in case the link is not working here is the info:

GLOBULINS

Basic science

Globulins are a group of proteins within the blood. They are produced by the liver and the immune system. Albumin makes up more than half of the total protein within the blood, and globulins make up the remainder. Globulins have multiple different functions; the group includes immunoglobulins, enzymes, carrier proteins and
complement.

There are four groups of globulins. Serum protein electrophoresis is the test used to distinguish one from another and establish levels of each within the bloodstream.

Alpha 1 globulins

• Mainly alpha-1 antitrypsin.

Alpha 2 globulins
– Alpha 2 macroglobulin.
– Haptoglobin.

Beta globulins
Transferrin.
Complement components C3, C4, C5.
Gamma globulins
Mostly immunoglobulins (antibodies):
IgG: majority of the immunoglobulin component. Many antibodies to bacteria and viruses are IgG.
IgE: involved in allergic response. Triggers histamine release. Also protects against parasites.
IgM: largest antibodies and first type produced in response to infection.
IgD: exists in very small quantities in blood. Function not very well understood.
IgA: found in mucous membranes, blood, saliva and tears. Protect body surfaces which are exposed
to foreign substances.
Tests and their clinical significance
Globulin level
Total protein is routinely done as part of the LFTs. Subtracting albumin from serum protein leaves the total globulin
level.
Decreased total globulin level:
Malnutrition (due to decreased synthesis).
Congenital immune deficiency (due to decreased synthesis).
Nephrotic syndrome (due to protein loss through the kidneys).
Increased albumin level causing decreased globulin fraction – eg, acute dehydration.
Page 1 of 5

Increased total globulin level:
Acute infection.
Chronic inflammatory disease – eg, rheumatoid arthritis, systemic lupus erythematosus
(SLE).
Multiple myeloma.
Waldenström’s macroglobulinaemia.
Hyperimmunisation.
Low albumin level causing increased globulin fraction – cirrhosis, nephrotic syndrome.
Globulin ratio may also be used, which is the ratio of albumin to globulin, and is usually between 1.7-2.2, ie there
is normally around twice as much albumin as globulin.
Serum protein electrophoresis (SPEP)
Electrophoresis divides serum proteins in order to determine if any group of protein is present in abnormal levels.
Serum is exposed to an electrical current which causes the different proteins to migrate in bands. It thus divides
globulins into the alpha-1, alpha-2, beta and gamma fractions. It is more sensitive than the quantitative
immunoglobulin tests (below).
Alpha-1 abnormalities are usually due to alpha-1 antitrypsin changes.
Decreased levels in congenital alpha-1-antitrypsin deficiency.
Increases are found in acute inflammatory disorders (it is an acute phase reactant).
Alpha-2 abnormalities mainly involve alpha-2 macroglobulin and haptoglobin.
Alpha-2 macroglobulin rises in nephrotic syndrome.
Haptoglobin levels increase in stress, infection, inflammation and tissue necrosis. Levels decrease
with haemolytic reactions.
The beta fraction consists mostly of transferrin. This is elevated in severe iron deficiency.
Where the gamma fraction is increased, it can then be further established whether this is a narrow spike-like
increase of a single immunoglobulin (a monoclonal rise) or a broader-based increase (polyclonal rise.)
Monoclonal rises are then further evaluated with immunoelectrophoresis or immunofixation electrophoresis (see
below.) Monoclonal spikes are more likely to have a malignant cause, with multiple myeloma being the most
common of these. However, the most common cause of a monoclonal rise is monoclonal gammopathy of
uncertain significance (MGUS) which is usually a benign condition. Abnormal immunoglobulins produced in
excess monoclonally are also known as paraproteins.
To establish a diagnosis of myeloma or Waldenström’s macroglobulinaemia, urine electrophoresis is also carried
out to look for monoclonal immunoglobulin bands within urine. The finding of Bence Jones’ protein is suggestive
of myeloma or Waldenström’s macroglobulinaemia.
SPEP can be further used to monitor response to treatment in myeloma.
Immunoelectrophoresis or immunofixation electrophoresis
Immunoelectrophoresis or immunofixation electrophoresis is usually performed when SPEP has found the
presence of increased gammaglobulin levels in order to further establish the nature of the abnormality. It identifies
the type of gammaglobulin. This is commonly used in the diagnosis of myeloma.
Quantitative immunoglobulin levels
These test the levels of the three major immunoglobulin groups (IgG, IgMand IgA).
Page 2 of 5

Causes of low immunoglobulin levels (hypogammaglobulinaemia)
Congenital immunodeficiency syndromes.
Conditions causing excess loss of immunoglobulins:
Sepsis
Nephrotic syndrome
Burns
Protein-losing enteropathy
Conditions causing less production of immunoglobulins:
Malnutrition
Alcoholism
Drugs – phenytoin, carbamazepine, immunosuppressants
Haematological malignancies – multiple myeloma, chronic lymphocytic leukaemia (CLL),
lymphoma
Rheumatoid arthritis
SLE
Viral causes – cytomegalovirus (CMV), human immunodeficiency virus (HIV), Epstein-Barr
virus (EBV), rubella
Causes of raised immunoglobulin levels
Electrophoresis will establish if these are polyclonal or monoclonal rises. The most common rise in
immunoglobulin levels is polyclonal, and due to immune system activity caused by infection or autoimmune
diseases.
Polyclonal rises in immunoglobulin levels:
Infections
Autoimmune connective tissue diseases – rheumatoid arthritis, SLE, scleroderma
Chronic active autoimmune hepatitis (IgG)
Primary biliary cirrhosis (IgM)
Chronic liver disease
Monoclonal rises in one class of immunoglobulin level:
Multiple myeloma (IgG or IgAusually)
MGUS. The most common cause of monoclonal rise, and usually a benign condition
CLL
Non-Hodgkin’s lymphoma
Waldenström’s macroglobulinaemia (IgM)
Primary systemic amyloidosis
Allergen-specific IgE tests
Blood tests can be done which measure the amount of IgE antibodies which have been produced in response to
specific allergens. These are usually done by the radioallergosorbent testing (RAST) or enzyme-linked
immunosorbent assay (ELISA) techniques. Blood allergy tests are more expensive and less sensitive than skin
prick testing, but can be useful in certain situations – for example, when there is a risk of anaphylaxis, or severe
skin rashes, or when the patient needs to continue taking antihistamines. Hundreds of different allergens can be
tested for in this way.
Common tests done in general practice
Common reasons GPs might order immunoglobulin tests or SPEP might include:
Excluding myeloma when other blood tests such as FBC or ESR are abnormal.
Serology tests for allergies.
Checking for immunodeficiency in patients with recurrent infections.
Checking responses to immunisations, such as hepatitis B or rubella.
Checking for immunity to infections, such as chickenpox in pregnant women.
Screening for coeliac disease.
Looking for autoimmune diseases.
Establishing the cause of abnormal protein levels found on LFTs. (Most often a raised globulin fraction
will be a polyclonal rise due to infection or inflammation.)
Page 3 of 5

Investigating the cause of a raised globulin level
Araised globulin level may be a relatively common coincidental finding. The work-up to establish the cause
involves history, examination and further investigations to determine which of the conditions listed above may be
causing the abnormality. This work-up would include:
History
Bone pain (myeloma).
Night sweats (lymphoproliferative disorders).
Weight loss (cancers).
Breathlessness, fatigue (anaemia).
Unexplained bleeding (lymphoproliferative disorders).
Symptoms of carpal tunnel syndrome (amyloidosis).
Fever (infections).
Joint pains (connective tissue diseases).
Patients with MGUS are asymptomatic by definition.
Examination
Temperature (infections, sepsis).
Arthropathy (connective tissue disorders).
Lymphadenopathy, hepatosplenomegaly (lymphoproliferative disorders).
Anaemia (lymphoproliferative disorders).
Signs of heart failure (amyloidosis).
Macroglossia (amyloidosis).
Signs of carpal tunnel syndrome (amyloidosis).
Investigations
FBC (anaemia, lymphocytosis, lymphopenia, thrombocytopenia).
ESR (raised in myeloma, sepsis, cancers).
Renal function (impaired renal function).
Calcium (hypercalcaemia in myeloma).
LFTs (hepatic diseases).
Serum protein electrophoresis (monoclonal vs polyclonal rise) and immunofixation electrophoresis
(defining immunoglobulin class in monoclonal rises).
Urine electrophoresis (Bence Jones’ protein).
X-rays if areas of bone pain.
Further investigations dependent on results of above, and where relevant performed in secondary
care.
Therapeutic uses of globulins
Some of the therapeutic uses of immunoglobulins:
Haemolytic disease of the newborn. IV immunoglobulin is given to the mother in pregnancy to prevent
antibody production.
Immunodeficiency diseases.
Guillain-Barré syndrome. IV immunoglobulin counteracts antibodies and slows progression.
Snake and spider bites – used with antivenom to help the immune system respond.
Kawasaki disease. IV immunoglobulin helps prevent coronary aneurysms.
Immune thrombocytopenic purpura (ITP).
Immediate short-term protection against hepatitis A, measles, polio, rubella.
Specific immunoglobulin preparations for hepatitis B, rabies, and varicella-zoster give short-term
immediate protection to a person exposed.
(See also the separate article Immunoglobulins – Normal and Specific.)
Page 4 of 5

Further reading & references
Loh RK, Vale S, McLean-TookeA;Quantitative serum immunoglobulin tests.Aust Fam Physician. 2013Apr;42(4):195-8.
Bird JM; Investigating an incidental finding of a paraprotein. BMJ. 2012 May4;344:e3033. doi: 10.1136/bmj.e3033.
Immunoglobulin; PublicHealth England
Busher JT; SerumAlbumin andGlobulin
Serum globulin electrophoresis; MedlinePlus
Monoclonal gammopathyof undetermined significance (MGUS); Melbourne Haematology
Immunoelectrophoresis – blood; MedlinePlus
Disclaimer: This article is for information only and should not be used for the diagnosis or treatment of medical
conditions. EMIS has used all reasonable care in compiling the information but makes no warranty as to its
accuracy. Consult a doctor or other healthcare professional for diagnosis and treatment of medical conditions.
For details see our conditions.
OriginalAuthor:
Dr MaryHarding
Current Version:
Dr MaryHarding
Peer Reviewer:
Dr HayleyWillacy

 

Update 9/2017: My LP results came back normal for once.  Some of my blood tests are still out of whack and is due to unknown cause. So as far as LP and other blood results I supposedly do not have MS or Lupus. I am assuming all my other conditions is what is causing all these crazy symptoms.

 

 

 

CEBV: Do Not Suddenly Stop Taking Vitamins

Over two weeks ago, I saw my neurologist and she is doing a complete workup from blood work, MRI of brain, cervical and thoracic spine and a lumbar puncture (LP). I must say I was shocked that finally I found a neurologist who was going to step up to the plate.

But due to her doing a LP I thought maybe I should stop taking my vitamins so if something such as the EBV or MS (Multiple Sclerosis) was in the cerebral spinal fluid (CSF) it will show more easily. Really with regards to MS, once you have the O-bands from what I understand is you have it for life (correct me if I’m wrong). But I thought as far as the EBV she was going to check the CSF for EBV levels.

The reason for this is I told her a year ago many of my CSF showed elevations in protein, red blood cells, white blood count and I was low in glucose but I am hypoglycemic which could account for that. I asked her to test for any and everything should could think of that could cause this along with checking for MS and levels of EBV.

So with this in mind I thought I’d stop my vitamins so to get a more accurate reading for the EBV levels. This was the worst decision I could have made. I have been bedridden for over a week due to the various symptoms. I just don’t want to move I hurt so bad and the fatigue is excruciating. After being bedridden a week I decided to restart the vitamins and now I am still trying to recoup. At this point I’d prefer staying in bed all day still … which I have been doing with the exception of this post.

So word to the wise: You may think the vitamins are not doing nothing but they are and if you stop them you will see it is obviously doing something and keeping the CEBV at bay to an extent. Even when taking them I am still fatigued and in pain and have various symptoms but at least I can do small things around the house versus being bedridden. So I have learned my lesson and never again.

For your reference here is the vitamins I am currently taking:

Please be aware if I list 2 links under a vitamin it is for alternative options and convenience for cheaper pricing, do not take both at same time. Do not take all the ones listed simultaneously! Just offering options that I may use in case multivitamins or vitamins are discontinued or sold out.

Most of these vitamins are for assisting the immune system, or antioxidants or helping other areas of the body which EBV could be effecting.

• Methyl-B12: **1000mcg or 5000mcg 1-2x a day. Helps a little bit of everything. Highly recommended if you are experiencing leg and/or feet pains or have diabetes. This helps to maintain and/or lower glucose to appropriate level. Also, helps with Gout Arthritis by expelling the uric acid out of the body and liver.. I know. Also a must if you have MTHFR.

Jarrow Formulas Methylcobalamin **1000mcg

 

• ** SmartyPants a multivitamin with high quality forms of each vitamin along with activated forms of B vitamins. I take the recommended dosage daily. I take the women’s formula. I did list the adult formula as well … my son takes that one. The good thing about these vitamins is that they also have fish oil, coq10, vit k and others that are nice. Will thin blood due to fish oil and coq10 in women’s vitamins.

SmartyPants Women’s Complete Gummy Vitamins

SmartyPants Adult Complete Gummy Vitamins

 

• ** D3: 1x a day

NOW Foods Vitamin D3 5000 Iu

Doctor’s Best Vitamin D3 5000iu

 

• ** Vitamin C: 1x a day

NOW Vitamin C-1000 Sustained Release

 

• ** L-Lysine: 1x a day

NOW L-lysine 500 mg

 

• ** Magnesium (chelated form): 1 a day

Doctor’s Best High Absorption Magnesium

 

• ** Zinc: 1/2 pill a day

NOW Zinc Gluconate 50mg

 

• ** Turmeric / Curcumin: 1x a day. Helps with inflammation. Does thin blood. Take with caution. If bleeding or nose bleeds starts quit immediately. Some of the suggested doses on the bottles are high so take minimal amount due to being on blood thinner.

Turmeric Curcumin Complex with Black Pepper

Life Extension Super Bio-curcumin

 

• **Selenium 1x a day

Selenium 180ct 200mcg

 

• ** Melatonin for sleep: 1-2x a night

Natrol Melatonin 5 Mg

 

• ** Epsom salt & baking soda baths:  2-3 soaks a week. I have found taking epsom salt & baking soda baths to be more effective. Epsom salt baths help in expelling toxins / waste out of the body and lymph nodes through the wrists and the bottom of the feet.

Baking soda – big bag 13.5 pounds

Baking soda – big bag  12 pounds from walmart

Epsom salt 8 pounds. walmart has a great price when available

Epsoak Epsom Salt 19.7 pounds

 

• ** CBD Oil: This helps with a lot of various pains, seizures and helps me sleep better too. You can vape it or get the drops. The following is the most popular sources for buying. Also, keep in mind this is legal in all 50 states. It is cbd oil from hemp.

CW Hemp – everyday  or everyday plus drops. Sign up for newsletter for specials and coupon codes. BTW! Visit the site and register from this link, and we’ll both get rewards points towards future purchases! Create an account now! Awesome!

Cloud9Hemp – for vaping and has various flavors. They have a coupon code for new customers on the home page.

 

• ** Metamucil and Generic Forms: for irritable bowel syndrome and overall health. 1x every other day. I rotate it out with the probiotics. One day metamucil the next the probiotics then repeat. Helps w/ digestion which is important with EBV.

Equate – Fiber Therapy – Smooth Texture

Equate – Fiber Therapy: Walmart

 

• ** Probiotics: 1x every other day. Rotate it out with metamucil.

Digestive Enzymes Plus Prebiotics & Probiotic

For other helpful items for making your life easier visit my Products I Use page. At the bottom of the page I list many items I use to help me be more comfortable and have a better quality of life. Big hugs!

Good luck and Stay Strong!

 

 

NIH Trials: Recruiting Now for Chronic Active Epstein Barr Virus

Hello All! I just was made aware that NIH will be doing trials for Genetic Studies of Chronic Active Epstein-Barr Disease. They are recruiting CAEBV recipients now so please apply if you meet the criteria. I also heard that they have a special living area aka a hotel where you stay free during the trial.

I think this genetic trial testing genetics is a great idea. I still feel the chronic form can be caused by specific genes if exposed to EBV. The genes I think that made us more prone to having the chronic form is Factor V Leiden Mutation and MTHFR plus my mom has Protein C. I’ll share a little story as to why I think this.

Over 20 years ago, I was very bad off. I couldn’t sit up by myself, I could maybe wash 5 dishes at a time, my energy was extremely low. I was very fatigued and I had tons of other symptoms but because I was so fatigued my mom thought maybe it was due to low blood sugar. She has diabetes type 2 so she had a glucose monitor and decided to take my sugar which resulted in being within normal range. Because I had kids she did not want to throw the lance in my trash can (don’t ask me why, she is special).

Later she took her blood sugar as normal and forgot she tested my blood … she ended up using the same lance. Two months later she was fatigued and very bad off like me.

With regards to all the doctors I saw they kept saying I am too young to have a chronic illness. With her, they did a work up and nothing out of the norm showed but then a friend suggested she see a nephrologist because her friend said he found things other doctors didn’t. She went and after numerous tests he said she had CEABV. Which caused her enlarged liver along with the various symptoms.

A month later I went and he confirmed I also had CAEBV. After years of all these doctors and finally a diagnosis that corresponded with my symptoms. I was relieved but yet it was bitter sweet because all they could do was treat the symptoms.

My mom had the fatigue, enlarged liver, sore throat, all over body pain, flu like symptoms but her’s was not as severe as mine when I started with all my symptoms. My symptoms consisted of fatigue, all over body pain, flu like symptoms, headaches or migraines (as the docs stated 😦 ), sore throat, red and sore eyes, ringing in the ears, tachycardia, high bp, nausea/vomiting, diarrhea, visual disturbances, photophobia, vertigo … these are the ones off the top of my head.

20 years later both our symptoms are the same but different. We still have all the same symptoms but my mom’s liver is effected more than mine but yet both our kidneys are effected. I am effected more with balance issues, vertigo, seizures (absent and drop seizures), walking issues (leg doesn’t work so I need to drag it), foot drop, positive romberg sign … just to name a few. She does not have these symptoms.  I also have hypoglycemia and she has diabetes 2 which could be one reason for the difference plus she has the protein C in her genes and I do not but why do I have more extreme symptoms??? I believe there may be other genes at play we are not yet aware of. I am looking into getting other genes checked in the next few months.

Also, to see the latest trials open for new recipients you can visit NIH’s CAEBV Trials page.

For more information on CAEBV you can visit RareDiseases Info page on CAEBV.

Also here are some FaceBook Groups for CEABV you may want to join:

Chronic Active EBV Support Group

CEBV (R & R) Research and Recovery

Good Luck!

 

 

 

.

Torticollis … just one more symptom

Years ago, I woke up and couldn’t turn my head and the pain ran from my neck into my head. I took various prescription medicines to no avail but nothing helped. After several days of being in pain I finally decided to go to the hospital. They ran tests for meningitis and did a CT scan. When the doctor returned to my room he said it was the worse case of torticollis he saw.

The doctor then prescribed robaxin 500mg 3x a day, naproxen 400mg every 6-8 hrs and percocets every 4 hours and was told to put ice on it for the first few days and heat thereafter. Remarkably it helped … Thank You God! Because it was the worst case the doctor ever saw he asked if I needed 4-6 weeks off from work to recover but I declined because I am a stay at home mom so what do we do … the best we can for our kids and keep moving.

The reason I am writing this is to inform you of torticollis. I am not sure why this has happened to me or what condition it is related to but wanted to give everyone the heads up. It was so severe I couldn’t turn or lift my chin up. I love my coffee and I resorted to using a straw … that was literally the straw that broke the camels back. All I tasted was a melting, burnt straw … yuck! Plus I am a talker so the torticollis prevented me from doing as much talking and laughing was painful.

After the first initial bout of torticollis every winter thereafter it would flare up again and again and again. It continued until I was placed on robaxin 500mg 3x daily then it stopped.

The last time I went to the hospital the torticollis was so severe when I swallowed I’d hear a thud and it would hurt so bad. Once again they checked me for meningitis but it came up negative and once again torticollis was confirmed. When I had problems swallowing and breathing it did scare me. I was afraid that it would get so severe it block my airway but one neurologist said no that could not happen which I still am in denial for that because of the way it felt and I trust how I feel over what a doctor says.

Big hugs to all. If you have questions write them in the comments below.

 

 

IBS (Irritable Bowel Syndrome) Day!

Since last night my stomach has been feeling bloated like a heavy weight covered in pain. Over 15 years ago I was told I had irritable bowel syndrome (IBS) which I laughed at. Because back then that was a catch all excuse from doctors just as fibromyalgia was … which I also laughed at when diagnosed with that.

Well obviously laughing at it was marking me for disaster … lol. A few years after they diagnosed me with IBS I began having severe pain in my abdomen and pelvic with severe pain slicing through it at times it felt like electricity but always had a severe heavy pain to it which was constant. I remembered one day it was so severe I actually took the advice of the doctor who diagnosed me years earlier I drank metamucil and holy moly … it worked for me. I was shocked. Did I have IBS now? Because I did have serious doubt about it years earlier I was never in as much pain when I was diagnosed.

As far as IBS, I do not know what illness it originated from or if it was stand alone illness with all I had. Normally I have IBS-D (Irritable Bowel Syndrome – Diarrhea) the other form others can have is IBS-C (C = Constipation). But on average I am IBS-D with the exception when the pain kicks in like stated above then I am suspecting I am IBS-C because the metamucil helps greatly with the pain. Is there anyone else who suspects both at time?

Currently, I believe I am in a bout of IBS-C because the pain is excruciating right now. I have been having the pain since last night and will be grabbing the metamucil here shortly to relieve the pain and avoid it from getting worse. I am an odd duckling though. I am currently having diarrhea and having the pains severely but when my stomach feels bloated it is normally IBS-C. So your guess is as good as mine. The good thing is I haven’t had severe IBS symptoms for about a year so that is not too bad at all.

I do however do have diarrhea every morning, I do think that is due to the CEBV and my body trying to prepare itself for the day. When I get up too early my body fights me relentlessly. I will bounce off walls, my legs will drag, vertigo is severe, words do not come out right just to name a few.

Life is fun! LOL! Stay Strong All!

 

 

At What Point Will My Body Collapse? How Much Pain Can It Endure?

Since my early 20’s I have been enduring pain and fatigue on a daily basis but at what point will the body simply say “I’m Done!” The daily pain and fatigue is just the tip of the ice berg. It’s been close to 20 yrs that the pain and fatigue has continued, over 20 years if you include symptoms starting in my teens which doctors were unable to discover the reasoning for that.

All I know is everyday is a new challenge or a repeat day of symptoms. Yes I have chronic ebstein barr virus (CEBV) and it does seems to effect everything … every organ, bone, muscle, tendon and recently I heard that CEBV can effect the bone marrow and cause hypocellular bone marrow or a hypercellular bone marrow. Interesting due to me having so many bone pains. Considering I have heard that CEBV can effect everything within the body this not out of the realm of a possibility. I read something previous, years ago, about it effecting the bone marrow but unfortunately can not remember the specifics.

I know that when I do too much I do get a lot worse. One lesson I cn share with you is be sure to listen to your body. If it says lay down then do it or you will regret it. My symptoms and conditions are vast:

Conditions:

• CEBV
• Chiari 1 Malformation
• Levoscoliosis
• Spasmodic Torticollis
• Gout
• Osteoarthritis
• Degenerative Disk Disease
• Syringomyelia
• Chronic Fatigue Syndrome
• Hypoglycemia
• MTHFR
• Factor V Leiden Mutation
• Fibromyalgia
• Spina bifida occulta
• Irritable Bowel Syndrome
• I know there are others but this is all my brain can think of at the moment.

 

Symptoms:

• Balance issues: feeling like I am being pulled to the side (mostly to the right), vertigo, sea sickness when sleeping (need more valium), (daily)
• Tips of toes are numb on right foot, bottom of feet always in pain like walking on rocks (daily)
• Feet/legs/hands numbing needles/pins, massive weakness in legs, (daily) (need gabapentin)
• No feeling in various areas of body which come on suddenly such as large areas of thigh or calf,
• All over pain and fatigue, muscle weakness, (daily)
• Ribs -front to back, squeezing the life out of me has been coming/going a lot more,
• Headaches (just painful not bothered by noise or lights), very painful/tender spots on head,
• Kidney and liver pains,
• Brain fog, problems concentrating (daily)
• Visual disturbances: blurry, tunnel vision at times, things turn grayish like a gray lens is over my eye, stabbing pains, itchy or dry feeling, or tearing. At varying times throughout day.
• Leg doesn’t work at times … need to drag it (mainly right leg). (daily) Legs went completely limp a year ago couldn’t feel them or move them, was in the hospital at time.
• Spasticity/very tight throughout body. Have trouble twisting and can barely put my socks on so stiff, can barely wipe bottom after going to the bathroom, (daily)
• Itchy and/or burning palms/feet. Also get burning sensation though out body.
• Speech issues: stuttering, slurring words, stumbling words, babbling words which don’t even resemble words, problems getting words out. (varies throughout the day)
• Lips, eyelids, cheeks (side of face) twitch (mostly on the right side) or they go numb also happens in other areas of body
• Absent seizures
• Difficulty swallowing at times and sometimes choke just breathing.
• Ringing in ears at times (several times a week)
• Stabbing pains
• Swelling, burning hands and feet
• Butterfly rash on face
•  Positive Romberg Sign
• Cannot walk a straight line (heal to toe)

Suspected other conditions:

• Multiple Sclerosis
• Lupus
• Lyme Disease
• Rheumatoid arthritis

So with all this going on for over 20 years and no help and I feel my body getting weaker. Each year there is more pain and more fatigue and more symptoms. What I do not understand is how someone can be in so much pain and still live. When I was younger I could’ve never imagine being in this much pain daily. My only words to leave you with is stay strong and big hugs.