Sporadic Blindness???

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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.

 

 

 

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NIH Trials: Recruiting Now for Chronic Active Epstein Barr Virus

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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!

 

 

 

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Cerebral Spinal Fluid (CSF) from Lumbar Puncture (LP) & My Results? WTF!

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As I said in a previous post, I was in the hospital last year from April 21st to July 3rd 2016 for a chiari 1 malformation decompression surgery. All went well during the surgery they stated that once they tested my flow within the brain after cutting the hole in my head that the CSF fluid was not flowing properly and that they had to remove some webbing so they did. However, after surgery I came down with an infection which they could not discover what it was then shortly later I also had chemical meningitis from the dura patch. (I will write a separate blog post on my experience and the craziness that ensued later) However because of the infection and the chemical meningitis they were taking CSF fluid via lumbar puncture every 3-7 days. The last two has raised some concerns for me.

On June 6th 2016 my CSF LP Results. Values in Brackets [ ] are normal values. Keep in mind I still had a touch of chemical meningitis at this point … which are lower than previous values from other CSF LP results. Also, keep in mind my CSF glucose can be low because I am hypoglycemic. I am just posting those that are a concern for me which raises questions … big ones:

  • Appearance CSF: Slightly Cloudy * ABN * (due to meningitis)
  • RBC CSF [0-1 /mm3]: 0
  • WBC CSF [0-5 /mm3]: 228 *HI*
  • Glucose CSF [40-70 mg/dL]: 30 *LO*
  • Protein CSF [12-60 mg/dL]: 92 *HI*

On June 23rd 2016 my CSF LP Results. At this point my chemical meningitis has resolved but compared to the results above they show something else is going on which I still have high values or even higher than the previous results. I was released from the hospital on July 3rd 2016. So I was released with the following values. On July 1st I had another surgery for chiari 1 malformation to repair the dura due to a CSF leak also. Maybe this could account for the high values but they did not do another LP so I am not sure but I doubt it is due to that.

  • Appearance CSF: Clear (meningitis resolved)
  • RBC CSF [0-1 /mm3]: 16 *HI*
  • WBC CSF [0-5 /mm3]: 502 *HI*
  • Glucose CSF [40-70 mg/dL]: 25 *LO*
  • Protein CSF [12-60 mg/dL]: 145 *HI*

So the questions are: Is this due to CEBV? Or is it due to something else?

With all my crazy symptoms which may or may not be related to CEBV or MS or Lupus … I seriously need a new LP to rule in/out other conditions that may be coming into play.

Has anyone else had similar results and if Yes … is it just CEBV or something else? Thank you and big hugs to all.

Also, if you are seeking information on CSF results click on the tab above for “Articles” it has many resources for LP Results. Good Luck!

UPDATE: From what I understand from various MS groups and resources is that you can have the above to due MS … with regards to EBV is still questionable. Resources below:

  1. http://www.healthline.com/health/csf-total-protein#overview1
  2. http://www.healthline.com/health/csf-cell-count#understanding-your-results7

I will update with a new post once I have completed a new LP to rule in/out MS and CEBV effecting the CSF results.


 

Actual Resources and Page Content:

  1. http://www.healthline.com/health/csf-total-protein#overview1

What Is a Cerebrospinal Fluid Protein Test?
Cerebrospinal fluid (CSF) is a clear bodily fluid that cushions and protects your brain and spinal cord. A CSF protein test involves taking a fluid sample from your spinal column using a needle. This procedure is known as a lumbar puncture or spinal tap.

The CSF protein test determines if there’s too much or too little protein in your CSF. Test results that indicate your protein level is higher or lower than normal can help your doctor diagnose a range of conditions. Another use for a CSF protein test is to check the amount of pressure in your spinal fluid.

USES

Why Do I Need a Cerebrospinal Fluid Protein Test?
Your doctor will order a CSF protein test if they suspect you have a central nervous system disease such as multiple sclerosis (MS) or an infectious condition such as meningitis. CSF protein tests are also helpful when looking for signs of injury, bleeding in the spinal fluid, or vasculitis.

High levels of protein in your CSF can indicate:

aseptic meningitis
bacterial meningitis
brain abscess
brain tumor
cerebral hemorrhage
epilepsy
MS
neurosyphilis
Acute alcoholism is another possible cause of high protein levels.

Low levels of protein in your CSF could mean your body is leaking cerebrospinal fluid. This could be due to a traumatic injury such as head trauma or a stabbing.

 

2. http://www.healthline.com/health/csf-cell-count#understanding-your-results7

Understanding your test results
CSF cell count
Normally, there are no RBCs in the cerebrospinal fluid, and there should be no more than five WBCs per cubic millimeter of CSF.

If your fluid contains RBCs, this may indicate bleeding. It is also possible that you had a traumatic tap (blood leaked into the fluid sample during collection). If you had more than one vial collected during your lumbar puncture, these will be checked for RBC to test the bleeding diagnosis.

A high WBC count may indicate infection, inflammation, or bleeding. The associated conditions may include:

intracranial hemorrhage (bleeding in the skull)
meningitis
tumor
abscess
multiple sclerosis
stroke
Differential cell count
Normal results mean that normal cell counts were found, and the counts and ratios of the various types of white blood cells were within normal range. No foreign cells were found.

Increases, however slight, in your WBC counts may indicate certain kinds of infection or disease. For example, a viral or fungal infection may cause you to have more lymphocytes.

The presence of abnormal cells may indicate cancerous tumors.

FOLLOW-UP

Post-test follow-up
If abnormalities are found by the CSF cell count and differential cell count, further tests may be needed. Appropriate treatment will be provided based on the condition that is found to be causing your symptoms.

If test results suggest bacterial meningitis, it is a medical emergency. Prompt treatment is essential. The doctor may put you on broad-spectrum antibiotics while conducting additional tests to find the exact cause of the infection.

MS Hug or Kidney Problems? That is the Question!

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Well this past week I was having massive pain in my lower, left back where the rib cage is. Mind you, I have had the ms hug way too many times to count but holy moly it was bad. Nothing seemed to work as quickly as previous times.

The pain started last Wednesday but was mild and bearable so huh no problem. As the days past the pain started to intensify. However, I have so many body pains I tend to ignore the smaller things so I just happened to overlook the pain until Friday when I noticed it was inflaming more.

By Saturday, I didn’t want to move I was in so much pain. It was so bad, I was actually considering going to the ER and I never do that unless I am in dire straights. Because if I went every time something was wrong I’d never leave … sad but true. So because I was unsure what was causing the pain I began drinking cranberry juice and cherry juice for the kidney which normally takes the pain away or minimizes the pain within hours of drinking but I didn’t notice a difference. Then it hit me, it may be the ms hug.

The ms hug can literally hit anywhere in the rib area. It can be on one side, or a lower part of the rib cage or the whole rib cage. Believe me the whole rib cage is excruciating. So with this in mind I started placing ice packs on my breastbone and upper spine. By placing the ice packs on these areas it helps calm down the ms hug greatly compared to just meds alone. Think Of the breastbone and the upper spine like piano keys when it spasms it effects areas of the rib cage that is why placing ice packs on those areas help reduce it quicker … it helps calm it down.

I first laid down and place the ice packs on those areas for about an hour and a half during the day which isn’t long but I have a family so that is all the time I had. Later that night when I laid back down I placed ice backs on my breastbone, upper spine and on the area that hurt just in case it wasn’t the ms hug. Also, because I was unsure what the pain was coming from I did continue to drink the cranberry and cherry juice throughout the weekend.

You may be asking yourself how does cranberry and cherry juice help the kidneys. The cranberry juice is what cleans and rids the toxins from the kidneys. The cherry juice works in a similar manner but with regards to the liver. That is why I do both to help them stay healthy to avoid future complications with them. Mind you I have been doing this for over 20 years since I was 16 years old … that is when my kidney problems started and presented with pain. Also, with me having chronic EBV it can effect your liver and causes it to enlarge so a ounce of prevention is a pound of cure.

By Sunday morning, my kidney or the ms hug was a lot better than Saturday. On Saturday I was in so much pain, I felt as though I was going to collapse, my legs felt weak and wobbly and I had the shakes very badly along with the kidney / ms hug. But by Sunday the pain was greatly reduced but still very painful but bearable … Amen!

Today is Monday and I did the same routine yesterday and last night. I drank cranberry juice and cherry juice and later in the night packed myself with more ice and now this morning I am doing a lot better. It only hurts when I twist my waist but a lot more bearable. Thank you God and for all those who prayed for me. It was greatly appreciated.

So hopefully by tomorrow, the pain will be completely gone. Keeping my fingers crossed. Big hugs to all and have a beautiful week.

Down and Out … but I’m Back!

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Sorry for all those following me for me not posting it has been a rough couple of years. What started all this off was a few years ago I threw a stick for a dog and well my knee went 3 different directions and I fell to the ground which tore my acl (and other ligaments) which they say now is incompetent. This lead to a blood clot in my leg, hospital stays, injections, and after 8 months was allowed to finally have surgery on my knee.

Shortly after that I was experiencing many more symptoms including balance issues (falling into walls) w/ a positive romberg’s sign, stuttering and slurring words, forgetting to breath, numbness and twitching of face, difficulty walking (feeling as though my leg is stuck to the ground or as if it didn’t get the signal to walk), more fatigue (which I didn’t think was possible), absent seizures and drop seizures and a bunch more. So my neurologist started testing for multiple sclerosis, lupus and all related conditions. When some blood tests came back it said I was negative for lyme’s disease but then the neuro said I should see a lyme literate doctor (LLMD) due to some of the bands that were high and showed it was chronic. He stated they were highly related to lyme’s disease. Due to all the debate over these bands in the medical community and the large out of pocket cost because most of these docs do not take insurance so it can get expensive I opted not to see the LLMD.

A month later my brain mri came back and showed I had chiari 1 malformation which could cause all my symptoms. Chiari can cause over 80 different symptoms to be exact and is considered one of the conditions that can mimic multiple sclerosis. Upon going to a chiari specialist neurosurgeon, he stated not only do I have chiari but a syrinx in my thoracic spine which is caused by the chiari blocking the flow of cerebral spinal fluid (csf) which allows the csf to seep into the spinal cord which causes various nerve problems and interrupting the signal to various body parts to move, etc.

So the neurosurgeon (NS) scheduled me to go into surgery 5 months later for chiari decompression. Normally when the chiari is addressed with decompression surgery the syrinx will shrink thereafter but it can take up to 1-2 years however the damage it has done may remain. With me the pain and symptoms have remained. I am looking to get another mri of my thoracic area after my appointment in July with my NS along with one of my skull/brain to ensure no fluid has collected.

I will be writing another blog post on my experience with the chiari surgery and all the various complications I had. Do to the many complications I have had routine csf spinal taps during the hospital stay and towards the end my csf spinal fluid still showed inflammation which I am somewhat attributing to the EBV but to be sure I will be seeing a neurologist and have them test my csf via spinal tap for MS and any other related conditions that could be causing the inflammation. Once this is done I will post the results.

I have heard through various online sources that EBV can effect the csf in the spine and cross the blood brain barrier which I would think can also mimic MS if it does this. Also, a year ago after a brain mri it was noted on the report that I had a lesion but they were not sure what caused it. All they knew is that it was not a stroke or TIA (mini-stroke). So I will be interested to see over the past year if anything has developed.

Stay tuned for my journey with chiari and syringomyelia (spinal syrinx). This is where it gets crazy w/ a 3 month stay and massive complications but through it all I stayed strong and even helped other patients in need. Pay It Forward! Big hugs to all.

PS Also if you research chiari 1 malformation do not exclude it from the possibilities of conditions based on the images you see on google, etc many are very dramatized. When I first saw it on a ms group as a possibility and saw the pictures showing it … I thought no way can a radiologist and a neurologist miss that … I was wrong. 1 in 1000 is believed to have it and it is missed a lot more than you think and it is critical to see a chiari specialist or you will just be wasting your time with all the neuros who know very little to nothing about it.

Here’s a YouTube Channel with tons of info on Chiari 1 Malformation and related conditions: https://www.youtube.com/channel/UCv2ze79ULx2m772UDUVTSww

Good luck and big hugs!

 

 

CEBV, CFS Hibernation … Don’t You Love The Winter Months?

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If you have CEBV … I think you know what I’m talking about. From Late Fall to early Spring my CEBV symptoms get worse especially the fatigue. If I could sleep for weeks on end I probably could with no problem.

Let me know if the these months are worse for you. I think it has to do with how the weather shifts. I am aware that if we are getting a bad storm, snow or rain, my body’s pain intensifies to the point I do not want to move.

When I first came down with CEBV, over 13 years ago, all I could do is lay on the couch. When I say lay on the couch I mean lay completely flat on my back so my whole body could rest. If I did not lay completely flat I could feel my tendons, muscles … pulling in pain. Until I got CEBV I was not aware of these muscles, tendons etc. We all know we have them but to feel the pain feathering out though every tendon, muscle and joint, bones…is pretty bad. At times it feels as though my ribs are going to crush me. My ribs will have a crushing and an electrifying shock just by moving … twisting, breathing, etc.

To make things worse, for me to even get off the couch I had to ask my 3 year old son to help pull me up because my body was so weak I could not sit up on my own. I could not wash dishes…just standing I would get extremely shaky and feel as though I’d collapse. My body was literally losing the battle the EBV was taking over every part of me. I was having all over body pain (muscles, tendons, joints), chest pains, kidney, liver pains and not to mention head pains. I could feel the veins in my head swelling but the mri and cts said I was fine…lol. I could touch my head where the veins were and you could feel the swelling veins but they said nothing was wrong. Visual disturbances, ringing in my ears … photophobia. Seriously in my experience if something is out of the scope of the doctor or they don’t want to bother researching … they won’t. They are useless. I only go to the doctors for basic symptoms that I know is not related to the CEBV but sometimes it takes me a while to realize if it is or not. Because CEBV also causes me nauseous and swelling throat…I drink coffee all day and it seems to help. When I first came down with this I also noticed hostess donuts would help with the nausea. (Just FYI)

The doctors tested me for everything under the sun and only until my mom got it were they able to diagnose it…this was about 6 years later. In the mean time I was diagnosed with secondary symptoms; photophobia, heart problems – my heart would throw in extra beats or skip beats, speed up what ever it wanted to do, hypertension (was put on a beta blocker), my knees needed to be replaced but I did not follow their recommendation for this. I asked them could they tell me what the primary cause was and they said no. I knew if I had my knees replaced it would be a miracle if I made it through the surgery due to how weak I was and that is not even saying that my body would except it. Considering my body was rejecting everything else…I knew it would reject the new knees. To boot at this time in my life I was only 22 years old…how awful is that.  All this by the time I was 22. Life is just beginning and I am done before I even start.

After spending this many years with CEBV my only advice is to seek a competent doctor who is aware of CEBV otherwise your wasting your time. Once you find that doctor they will only be able to treat your secondary symptoms because there is not enough research on CEBV. You simply need to rest and not over due. You may also notice if you do too much activity that you may begin to vomit and get diarrhea…so rest. We have every symptom in the book … just rest.

Accept what you can do and don’t get depressed over what you can’t…this has helped me through.

Some activities that my mom and I do to get me through the day…unfortunately it’s couch potato stuff but be thankful for the internet, facebook, video games, netflix, wordpress – start a journal to get out frustration or daily activities, struggles and don’t worry too much about spelling…be thankful for spellcheck…I am. Smile   Remember it takes  years to build up your resistance to do some of these things. If you are new to CEBV just watch TV flat on your back the rest is for those use to their limits …. just be sure to listen to your body, if it says lay down …lay down … which is pretty much all the time but I am referring to if you go to the bathroom and the room starts spinning or what ever beautiful symptom you may display at that time.

PS if a doctor calls you a hypochondriac…find a new doctor that doctor is a flake for not doing their research. I’ve heard this one before. Doctors say this when they are lazy and don’t want to bother with helping you or do their job. My mom found a great doctor who is an internal med doctor and a liver/kidney/spleen doctor might be able to diagnose you. (Sorry forget the name of specialist hepat….something. LOL. Smile

Good luck and keep in touch.

Update: MTHFR Protocol and Affects on Diabetes

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Since finding the MTHFR Protocol I have been taking the methyl-B12 (20mg daily) and methyl-folate (3200 daily). I have found that I have increased energy…very little though. I am still in the stage of adjusting these doses to get the maximum benefits. I believe if it wasn’t for the chronic fatigue syndrome (cfs) and chronic epstein barr virus (CEBV) these doses would be very beneficial for the MTHFR.

As a side note, my mom has the same conditions plus diabetes. Before giving her the methyl-B12 and methyl-folate she would have pains in her legs which made her dread walking also her sugar levels were out of control plus her good and bad cholesterol levels were at war with each other…HIGH! The doctors tried and tried time and again to control these factors with no success. With the MTHFR and especially the CEBV irritating these levels one moment her sugar levels would be an 8 and the next 320 – her levels would be erratic. She also has a history of multiple mini-strokes and a fatty liver/non-alcoholic liver. Once I researched the MTHFR protocol further along side of clinical trials then I placed her on a regimen of vitamins.

This is the vitamin regimen she is currently on;

Methyl-B12 (5000mcg 2x daily): This proved to relieve the leg pains 90% when she misses a dose the pain rapidly returns. The protocol also stated that the methyl-B12 would assist / normalize the management of sugar levels and cholesterol…along side the methy-folate. Brand I prefer is WonderLabs Methyl-B12 and Jarrows is another good alternative.

Methyl-Folate (1600mg 2x daily): This was taken with the methyl-B12 for the most benefits. Research has shown that the majority of B12 deficiencies stem from a folic acid deficiency.

P5P (25mg 2x daily): This in combination with the above vitamins has proved in clinical trials to greatly reduce strokes at 50mg a day.

Basic B Complex by Thorne Research (1x daily): Taking a B complex is important in case there is other deficiencies. If there are other deficiencies within your B complex for example B6 then the B12 will try to compensate for this deficiency. This specific brand of B Complex are all active forms of the B supplements.

Now Foods Spectrum Multi-Mineral (2x daily): Further support for B supplements. While using the B vitamins it may deplete your iron, potassium and others.

Silymarin WonderLabs (1 daily for 2 weeks than 1 every other day): Further research has shown this reduces liver inflammation and rids the liver of toxins thus improving liver function. I alternate this, once a month with Now Foods Liver detox-rejuvenator. This also assists with clearing out toxins in the kidney and lymph nodes. She takes the Liver detox for 1-2 weeks then switches back to the silymarin.

With the above vitamin regimen after 2 months she has expressed that her vision is more defined, her legs no longer hurt (as long as she continues taking the B12), her doctor has checked her good/bad cholesterol levels and they were well within the normal range … which made her extremely happy that it is under control. Her doctor also reported that her sugar levels were normal and liver and kidney function tests have vastly improved. She has also tested her sugar on a daily basis since starting the above regimen and has noticed no erratic fluctuations….so everything seems to be working wonderfully. Plus in addition to the positive outcomes of the tests, she was also taken off of 2 diabetic meds.

Taking the above regimen she has also noticed more energy but just enough to stay awake about 2 hours longer than her norm. (Of course this is due to the CEBV).

***Please consult a doctor prior to making any changes to your regimen. This is for my reference/journal and is for informational purposes only.***

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