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.

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CEBV and The MS Hug … Ribs Squeezing Pain

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The MS Hug, not just for MS (Multiple Sclerosis). 

Do you sometimes feel as though a gorilla is giving you a huge hug around your rib cage and the result is PAIN! Yes, that is the MS Hug. You may experience this pain around your entire rib cage or just part of your rib cage.

Here is an excerpt from About.com on MS Hugs:
http://ms.about.com/od/signssymptoms/a/ms_hug_pain.htm

How Common is the “MS Hug?”

This is hard to say. Up to 75% of people with MS will experience pain as a symptom, but statistics on the MS hug are difficult to find.

What Causes the “MS Hug?”

It is caused by a lesion on the spinal cord and is technically classified as a neuropathic pain called a “paresthesia,” which refers to any abormal sensation. The sensation itself is the result of tiny muscles between each rib (intercostal muscles) going into spasm. These muscles have the job of holding our ribs together, as well as keeping them flexible and aiding in movement, like forced expiration.

What Does It Feel Like?

Like many MS symptoms, the “MS hug” feels different for different people – it also feels different in the same people on different days or at different times of day. It can be:

  • As low as the waist or as high as the chest; rarely it can be felt as high as the shoulders and neck
  • Focused in one small area (usually on one side or in the back) or go all the way around the torso
  • Worse when fatigued or stressed
  • Present in “waves” lasting seconds, minutes or hours or can be steady for longer periods of time
  • Described as sharp pain, dull pain, burning pain, tickling, tingling, a crushing or constricting sensation or intense pressure

How Severe Can It Get?

Some people experience difficulty breathing or painful breathing, so severe that it is often perceived as a heart attack or panic attack.

Hope you find this helpful. I was experiencing the MS Hug for years so I thought you may find this helpful if you are experiencing the same pains.

Side notes: you may still experience MS Hugs without having MS. It’s called Costochondritis.

How to Get Relief from the MS Hug aka Costochondritis!

The best way I have found to  calm it down is with ice packs (I prefer the gel kind) on the breastbone and upper back following the spine downwards. This is the best way I have discovered to relieve it quicker. You can also take one or two of your muscle relaxants such as; gabapentin, valium, flexeril, robaxin … whatever meds you have to assist the process but ice packs is a given with it or you will be waiting a lot longer for it to subside.

Good Luck and Big Hugs! Stay Strong!

UPDATE! As of 2017, I recently was made aware that fibromyalgia can also cause costochondritis … just FYI.

 

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.***

CAUTION MTHFR dx: NAC Disables Epstein-Barr Virus

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Or so I’ve read from the NIH trials on their website. As per the treatment/protocol for MTHFR (see tab) from the genome project, I began the suggested 600mg of NAC daily but soon realized my pain intensified and my blood pressure rose an additional 20pts daily with use. This may be due to my MTHFR or simply the EBV fighting back. Once I discontinued using NAC my blood pressure slowly returned to normal over the following two weeks.

Many conflicting articles online states that NAC does assist in Chronic Fatigue Syndrome and EBV but for MTHFR sufferers due to the methylation being insufficient may cause a detox reaction to NAC and other gluthiane precursors. Personally, I believe starting NAC at lower doses such as 100mg would assist with detox reactions in MTHFR sufferers.

Previously, I have used NOW FOODS Liver Detox and Rejuvenation without any ill effects even though this product does have the ingredient NAC at 100mg. I cycle with this product and Silymarin 250mg daily…3 days on the Liver Detox and 10 days on Silymarin then repeat. Plus 2-3 Epson Salt baths weekly to assist in detoxing my body of free radicals.

For those starting NAC proceed with caution regardless of your illness. NAC can cause chest pains due to the process of making your heart think it is not having enough oxygen. You may Google how NAC effects your body, it is a somewhat uneasy process.

*Always consult a physician prior to changing your regimen. For informational purposes.

Hello world! Live and Laugh with CEBV, CFS, and MTHFR!

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Daily life, living with chronic Ebstein-Barr Virus, Chronic Fatique Syndrome, MTHFR, Factor V Leiden Mutation and more. This is my journal of my life dealing with the ups and downs of my illness and laughing with my mother who also suffers from CEBV, MTHFR, FVL and CFS. I am actively seeking a cure or remedies to simply assist my mother and I in feeling normal with many trial and errors. Connect with me to follow us as we discover new ways to normalacy through laughter and remedies.