Latest rheumy results!

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jev
Regular Member


Date Joined Jun 2008
Total Posts : 168
   Posted 9/2/2008 3:36 PM (GMT -7)   
smilewinkgrin  Hello to all of my fibro-buds! How in the heck is everbody (silly question....we all have fibro tongue don't we)? So sorry I've been away so long. Life seems to have shifted into overdrive and time has become a precious commodity as every waking moment seems to be so dang full of stuff to do leaving little or no time to visit. Especially with school restarting.....my daughter is now in 7th grade and the homework levels are nightmarish as well as the complexity of the subjects. smhair
 
Anyway, I told y'all I would keep y'all posted on the results of the blood tests the rheumy runs every 6 - 7 weeks and the progress of the glutathione/atp injections. I'm becoming more and more convinced that chronic EBV may be the driving force behind my fibro & cfs. I had my 3rd set of blood results last week and they showed still-high levels of EBV IGG.....an indicator of active EBV.....as all 3 tests have been high. I also had slightly off gamma-globulin levels (not real sure what that means) and off levels of something called cyclic amp (not sure about that either.....she didn't really seem too concerned about either of these). All other tests were within the set ranges for normalcy. The glutathione levels have risen to the point where she took me off of the shots with only atp pills to take daily now. I've had a couple of fairly minor flares during this whole time period but still nothing approaching how I felt before my first visit in early June.
 
The bottom line is I think the glut/atp shots worked really well in lessening most of the symptoms as well as putting a couple of them to sleep for an extended period. I was not, by any means, symptom-free during that time but they were much more manageable, even during the flare-ups. The fatigue/tiredness level seems to have gotten somewhat worse over the last couple of weeks which, i guess, could be a result of the continued high EBV activity. I'm thinking strongly about trying that malic acid/magnesium regimen now that the shots have ended to see if that does anything.....there should be no interaction with the atp. I'm still drinking that Monavie stuff too but I really don't know what effect, if any, it is having. Since it would require me to stop the atp and not try the malic acid/mag regimen and do nothing else but the Monavie for a period of time to test it's effectiveness, I'm hesitant to do that for fear that I might return to pre-rheumy days and I really don't want that! cry
 
Gentlest of hugs for everybody.....I missed y'all so much!
John


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John (53)
*****************
Dx'd June 2008 with Fibromyalgia & CFS  possibly caused by chronic Epstein-Barr virus (many years of ongoing symptoms.....recently worsening)......also, previously dx'd sleep apnea, high blood pressure, hypothyroid, low testosterone, high cholesterol, heart arrythmia & headaches (all types)
 
*****************
Several meds too numerous to list or remember!


Sera Smiles
Veteran Member


Date Joined Nov 2006
Total Posts : 671
   Posted 9/2/2008 6:22 PM (GMT -7)   
John, we have never met 'formally' on this forum, but I read with interest your brave stories during the spring and into the summer. I realized that we hadn't heard from you for a while when I saw your name here tonight! I am so glad you are back. I am more thrilled, tho, that you are doing better. I think you may be on to something regarding the EBV and FM issues. I wish I had done better in high school chemistry so that I might understand better all the tests we have run and what they mean. I will be interested in hearing if you continue the Monavie or start with the malic acid/magnesium. Keep us posted on your progress and again, its great to see you here again. You were missed!
Peace!
DX- FMS 2003; Hypertension; Depression; PTSD; IBS
 
RX- Ultram 100mg x 2/d; Toprol 100mg/d; Cymbalta 60mg/d; Buspar 5mg x 2/d;  Malic / Magn 1650/300 x 2/d; Claritin 10mg/d; Bendryl 50mg x 2/d;
B-Complex 1/d; Melatonin 5mg/night; Ginseng 500mg x 2/d
 
PRN- Flexeril 10mg; Hyoscine Butyl 2 mg
 
 
"Its never too late to be who you might have been" George Eliot


Southernlady
Veteran Member


Date Joined Jun 2008
Total Posts : 844
   Posted 9/2/2008 7:19 PM (GMT -7)   
John, glad to hear from you again.  It's good to know your doing better too.
 
Don't stay away so long.  We missed you!
 
God Bless!
Shannon
Of all the things that I have lost, I miss my mind the most!!!!


Chartreux
Veteran Member


Date Joined Aug 2006
Total Posts : 9622
   Posted 9/2/2008 8:38 PM (GMT -7)   
So glad to hear your doing better at least in the manageable of the pain, hey thats a good starting point eh...
Lots more continued success, keep us posted and as always lots of soft hugz.........
************************
* Asthma
* Allergies
* Osteoarthritis
* Spinal Stenosis
* Mild DDD
* Enlarged
Pituitary Gland
* Fibromyalgia
*************************

Patient: "I always see spots with my eyes"
Doctor: "Didn't the new glasses help?"
Patient "Yes, now I see the spots clearer"


Irish Babe
Veteran Member


Date Joined May 2007
Total Posts : 1371
   Posted 9/3/2008 7:03 AM (GMT -7)   

John, so glad you're back. I've wondered about the EBV also, it seems like these glut/atp shots are helping you. Any improvement is a blessing.

Hope your DD has a wonderful yr in 7th grade, you're right it is a tough grade. I taught it one yr, nightmare is a good word. lol

Hope you have a good day.  God bless.  Alice.


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 9/3/2008 7:27 AM (GMT -7)   
So are you saying your not smarter than a 7th grader John??? smilewinkgrin I'm glad you got a few minutes to check in with us, we have missed you.
 
I'm glad your doing better and I hope the malic acid/magnesium makes you feel even better. I'm going to a new rheumy in the next few weeks and will be asking about EBV and the Glutathione injections amongst many other things.
 
I hope everything continues to get better for you.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 9/3/2008 7:32 AM (GMT -7)   
Hi, John!  Just had to pop in and say I'm happy to see you and glad that you have gotten some relief.  I hope the malic acid/magnesium supplements help you as much as they have helped me! 
 
Don't be a stranger!
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


GamJill
Veteran Member


Date Joined Jun 2008
Total Posts : 1279
   Posted 9/3/2008 7:46 AM (GMT -7)   

Hi John-

It's always nice to hear from you!

Sounds like the verdict on the glut/atp injections is that it did help along with the Monavie. That's good news!

My youngest son is not going to the High School this year, he is going to what they call "Alternative School" (he has Attention Deficit) and they do not bring home homework. It is all done there. Thank God! Because I know times have changed and I'm not smarter than a "17" year old!! HeeHee. GamJill


 
 
Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck
 
Zoloft, Tylenol 4000 mg., Zanaflex


sheryl=jk
Veteran Member


Date Joined Oct 2004
Total Posts : 4083
   Posted 9/3/2008 8:16 AM (GMT -7)   
My daughter is in the fourth grade, I can barley keep up with hers.  And my son is in 8th, forget he is on his own! smhair
Hi John , nice to meet you, well not becasue we have fibro, but you know what i mean.
I bet the EBV is making you fatigued. i am glad the shots have helped you, continue to keep us posted, take care..
 
God Bless,and have a Great Day!!.......Love.....Sheryl
xcema,hypermobile,Chronic Bronchitus,Fatigue,Positive ANAFibro-05--Had surgery on left & right knees 06, Interstial Cystitis-06 Spondlylosis/Disc Degernation Disease severe arthitis lower back -08,implantedInterstim-06 hysterectomy & IBS-06 Arthiritus-04 Depression-04GERDS/ Hiatial hernia -07   Anxiety-07 Gastroparesis-08--Occasional Migraines
 Reglan,Protonix,Prozac,Wellbutrin,Erthomyicin,klonipin,occasional phernergan, loratab, zanaflex  marrried 2 children, 1 with mild autism, Bipolar(9),  Abilify, Buspar, Celexa Son(13) is bipolarw/migraines, Topamax, ZantacGod plz grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference..." Plz help HW to help others by donating: http://www.healingwell.com/donate/


jev
Regular Member


Date Joined Jun 2008
Total Posts : 168
   Posted 9/4/2008 10:49 AM (GMT -7)   
Hi all! Thank all of you so much for the warm re-welcome. I truly missed my family and friends here. I'll try very hard not to be gone so long between posts in the future. Our friendship, interaction, listening power and caring among members is so outstanding and important for everyone. Just being able to share something with others and knowing someone is listening and cares enough to answer back with a suggestion, sympathy or warm word of encouragement and care can provide even the tiniest of comforts and we all know all too well that ANY comfort is better than none at all!
 
(BTW.....I don't remember math in school being this dang hard and so completely technical. I always thought the correct answer was the most important thing.....not the exact, step by step presentation of it! smhair On top of that, they are even allowed to use calculators and computers when all we had was our mind, fingers and an abacus - LOL!)
 
The absolute warmest & gentlest of hugs for everyone,
John
*****************
John (53)
*****************
Dx'd June 2008 with Fibromyalgia & CFS  possibly caused by chronic Epstein-Barr virus (many years of ongoing symptoms.....recently worsening)......also, previously dx'd sleep apnea, high blood pressure, hypothyroid, low testosterone, high cholesterol, heart arrythmia & headaches (all types)
 
*****************
Several meds too numerous to list or remember!


RedDiane
Veteran Member


Date Joined Jun 2007
Total Posts : 906
   Posted 9/4/2008 12:41 PM (GMT -7)   
John, My son did a calculus test in HS and had every answer perfect, but because his work was not shown the way the teacher wanted, he got a B on that test. Diane
Fibromyalgia since 1984, Sjogren's, Hashimoto's Thyroiditis, Auto-immune eczema, GERD, osteoarthritis, IBS, RLS, sleep apnea


jev
Regular Member


Date Joined Jun 2008
Total Posts : 168
   Posted 9/4/2008 3:23 PM (GMT -7)   

Ooooooooooooooooooooooo, Diaaaaannnnnneeeee........don't get me started!!!! shakehead smhair devil skull mad skull mad   skull  

I know the feeling all too well....helping her with homework, getting the right answer and then getting marked off for not showing and explaining it EXACTLY the way the teacher wanted.....I felt like I WAS back in school and being graded!!!!! shocked rolleyes  

Gentle hugs dear,

John

  wink wink wink wink wink


*****************
John (53)
*****************
Dx'd June 2008 with Fibromyalgia & CFS  possibly caused by chronic Epstein-Barr virus (many years of ongoing symptoms.....recently worsening)......also, previously dx'd sleep apnea, high blood pressure, hypothyroid, low testosterone, high cholesterol, heart arrythmia & headaches (all types)
 
*****************
Several meds too numerous to list or remember!


mamanan
Veteran Member


Date Joined Jun 2008
Total Posts : 846
   Posted 9/5/2008 7:25 AM (GMT -7)   
John! It is so good to hear from you again. I don't know if you remember me, since I had just started posting before you left. I had a bad day, getting used to all this, and you called me 'dear lady' in your reply, lol. You sounded like such a gentleman, I guess it stuck with me! I'm so glad that yo are feelign better, especially if you are so busy! We (well, dh really) are trying to get the summer projects finished, then start on the fall work to get ready for winter. It is a very busy time of year. I am glad that school has started again, I can help dh more with the kids out of the way. So far no homework here though! I am not looking forward to math either, last year's 4th grade stuff was so tarnge, not at all like I remember! I think they invented new math just to annoy parents :(
in the land of Limbo, taking OTC meds (which don't work).  Started at 5mg of amitriptyline.
Waiting for referral to rheumy to get a dx. waiting, waiting, waiting....


jev
Regular Member


Date Joined Jun 2008
Total Posts : 168
   Posted 9/8/2008 11:01 AM (GMT -7)   

Hi Mamanan! I'm sorry it took me so long to respond to your sweet post! :-)   Yes, I do remember who you are! My dear lady, you are always "Dear" to me as are all ladies, young and old, here and everywhere........that's just the way I was brought up by my mom until she passed away when I was 14 and continued on by my dear ex sister-in-law who kinda' served as my mom afterwards. I had a couple of outstanding guides who taught me right!

(BTW.....no only is that "new" math annoying, it's also frustrating because they invented new terminology and methods for the same stuff we did in school making it seem more like Greek than anything else!) tongue

Gentlest hugs,

John


*****************
John (53)
*****************
Dx'd June 2008 with Fibromyalgia & CFS  possibly caused by chronic Epstein-Barr virus (many years of ongoing symptoms.....recently worsening)......also, previously dx'd sleep apnea, high blood pressure, hypothyroid, low testosterone, high cholesterol, heart arrythmia & headaches (all types)
 
*****************
Several meds too numerous to list or remember!

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