If Only I Had A Brain
The brain fog is getting really bad lately. I’m forgetting what day it is, where I’ve put stuff, if I just took a pill 1 minute ago. It was so maddening that I’m sitting there looking at the bottle and not remembering if I just opened it and took the pills. No body else at the table was paying attention so they couldn’t confirm if I had or not, thought Mom said she thought I had taken them. It was just the magnesium/calcium supplement prescribed by the Rheumatologist that I have to take 3 times a day so missing one dose wouldn’t harm me but it was so frustrating that I was on the verge of tears but juts made a joke and tried to laugh it off. I shouldn’t let myself get riled over something so silly.
If I didn’t pre-type out my blog entries using WORD with its have spell & grammar check I’d have very unintelligible posts. I have a major problem with “dyslexic” typing, I switch letter, spaces and sometimes type the wrong word entirely. I’ve had this problem since 2000 or so when I first became ill with my “mystery illness” but it’s gotten a lot worse lately. I spend hours trying to get my thoughts out onto the word document before I paste it to my blog. Which makes me think that this has some kind of neurological connection, especially since my lab results from rheumatologist tests came back as “inconclusive” again. Tests show some kind of inflammation but none of the specific antibodies to pinpoint a disease.
I’m taking quite a few supplements now; some prescribed some just recommended by support groups. Also as of today I am off the Prednisone (corticosteroid) which I am happy. I was weaned down to a low dose so the short term side effects were pretty much gone, but long term use can cause bone loss (Osteoporosis), cataracts, Glaucoma, and stress out the liver. Since I’ve been on the 5mg, for last 2 weeks and now that I am off it I am having problems with swelling, especially in my feet. What’s with that?
Supplements seem to be helping. 
I am feeling a little bit better. I was getting very scared at how quickly the pain and weakness was increasing and how it was spreading every where. I still have the bone and joint pain, but the hyper sensitivity to touch is not so intense except for a few areas and the muscle weakness has gotten better. I still have intense fatigue. I have general tiredness all day but when I engage in short bursts of activity( like today vacuuming, cleaning, moving stuff in my room)It wipes me out so bad that I couldn’t stand or keep my eyes open so I took a nap. It’s hard adjusting to this new “life” wanting to do all these chores or task and knowing I can only choose one of two because I won’t be able to do more. I’m not even 30 yet and I feel like I am living in a disabled elderly women’s body, limited physical strength, no endurance and limited cognitive function. I should start collecting weird hats from garage sales; go to the mall yell weird phrases at kids and wave my cane threateningly at them.
Ok so uhhh what’s been going on this week? Monday had usual blood draw at Woodland, platelets are still in the normal range.
Tuesday I had an appointment at the FIA to file for Medicaid. This social worker was a lot nicer than the last one and very helpful. She said with all my health problems I should approved for Medicaid, In the meantime I got upgrades from county health plan to adult medical program not sure what that means not got the card or the info/benefit pamphlet yet. Also she asked me why I didn’t apply for financial assistance through FIA, well because ‘I’ve been denied so much that I figured if I just asked for minimum medical they not think I was trying to “milk” the system and I’d more likely get Medicaid which I desperately need.’ She said she think I can get some disability financial assistance too; it won’t be more than a couple hundred a month, but it should help with some of the cost not covered my medical coverage. That is nice since I still have $3000 in medical to pay off. It takes at most two months to find out if you’re approved or denied but the social worked believes I will have a response closer to a month’s time.
Wednesday I can’t remember doing anything of interest; did I do a load of laundry?
Thursday today cleaned up my “dungeon room”, and a little of the surrounding area of the basement. Lab results from Dr. Dowd the Rheumatologist came in mail today. I have been trying to make sure I get copies of all tests to keep in my own records, So I can track my condition and if I go to another specialist and yhey haven’t been faxed the info they can review my copies.
Test results:———— Normal range
LDH: 297 High———— 120-260
Lactic acid dehydrogenase (LDH) is an enzyme that helps produce energy. It is present in almost all of the tissues in the body and becomes elevated in response to cell damage.
SED RATE: 42 High ———— 0-20
A high sedimentation rate (sed rate) may indicate inflammation caused by an infection, cancer, an autoimmune disease , certain inflammatory diseases (such as rheumatoid arthritis or polymyalgia rheumatica) or other medical conditions (such as chronic kidney failure, toxemia of pregnancy, or thyroid disease).
25-hydroxy vitamin D: 13 Low———— over 30
Vitamin D deficiency can result from lack of exposure to sunlight, lack of adequate vitamin D in the diet, liver and kidney diseases, malabsorption, and medications such as phenytoin, phenobarbital, and rifampin. Vitamin D deficiency may lead to low blood calcium levels (hypocalcemia), thin or weak bones (osteoporosis and osteomalacia), and high levels of parathyroid hormone (secondary hyperparathyroidism).
C - reactive protein: 0.7 High———— less than 0.5
This blood test measures the amount of C-reactive protein (CRP) produced by your liver when you have inflammation somewhere in your body. Higher-than-normal levels of CRP may indicate inflammation or a bacterial infection, such as rheumatic fever.
Beta 2 Glycoprotein IgM: 18 High ————less than 10
Is a protein that binds to cell walls and is associated with embolism (clotting/strokes) and another marker of Antiphospholipid antibody Syndrome.
Alpha 2 Globulin:1.0 High———— 0.5-0.9
Alpha-2 globulin. Is a protein called haptoglobin, that binds with hemoglobin, high counts may be a sign of hemoglobin(red blood cell) damage or inflammation.
I was surprised my vitamin D was low, because I take a “high potency” daily multivitamin/mineral and I get some sun but it could just be from malabsorption since I do have digestive problems.
Tomorrow, Friday I think I’ll be going to Randazzo’s farmers’ market with mom and pick up more fresh veggies and fruit and Saturday I have my MRA & MRI brain scans in Southfield. I’ m supposed to get either a copy of the scans on CD or films to bring to my Neurologist. I hope I get a CD then I can copy it too. Be kind of cool to own a scan of my brain LOL.
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Hi
Your Vit-D result is interesting - have you had a total Vit D panel? You realise that there are two types of Vit D - 25-OH and 1,25-OH.
When you get a 25-OH that is low - it could mean two things, your total vit-d (25+1,25 is low) or that you are over-converting 25 to 1,25.
The latter is part of what is called a ‘TH1 immune system activation’. This process is very common in untreated borreliosis. Borreliosis is a general term for a group of bacterial infections that encompass Lyme disease. Lyme disease in its late stages looks very much like FMS and CFS.
If you have not had test for this I would recommend the following:
CD-57 - stricker panel from Labcorp
Vit25/Vit1,25 (the sample needs to be frozen after it is taken until it arrives at the lab)
Bowen LAb IFA analysis for borreliosis
Igenex ELISA and Western Blot
My boyfriend was diagnosed with FMS/CFS for four years - turns out he has chronic borreliosis. He is going to have anti-biotic and supplement treatment now - hopefully he will get some health back.
I would recommend anyone with a CFS/FMS diagnosis get those tests. People think borreliosis/Lyme is obvious rash, obvious symptoms, short term antibiotic therapy - all untrue, the rash can get missed, the symptoms vary person to person - and most importantly - they change from the time when you get infected from when the disease progresses. Chronic Lyme has symptoms of CFS/FMS.
Your Vit-D result smacks of borreliosis - but it needs doing again with both 25 and 1,25-OH
If you want more help - speak to folks on the following Yahoo Groups:
Lyme Aid
Eurolyme
CFS FACTS
Good luck and Best Wishes
Lara
PS - feel free to e-mail me: (JavaScript must be enabled to view this email address)
hey sorry to hear about all the problems but I guess we can all relate one way or another or we wouldn’t be on here. Have you tried an MRI of the brain or spine? Small multi focal bleeds can cause your problems. My friend 32 had three strokes and I couldn’t get anyone to take her seriously due to her age. Finally took her to Mayo clinic where they confirmed 3 strokes and told her not much they could do. Many of her symptoms were the same as yours. Another problem may be Multiple sclerosis scary but true, treated early symptoms may not get to severe. Good luck in your search.
I’m sorry to hear about everything that you have been through. I actually sit here sometimes (and please don’t take offense) and think to myself…“I know there are others worse off than me, so I need to quit complaining.” But I’ve been sick for almost four years now. Since I had my daughter. I remember going to my OB/GYN and asking him if my hormones had gone “back to normal?” My face was flushed and felt hot to touch. I ran a low-grade fever. My back ached like I was 80 years old. My heart raced. I had chest pain. My kids couldn’t sit on my chest it felt so sore. My hands and feet were always so cold. I had night sweats. Constipation. Shortness of breath. Nervousness. Moodiness. But my hormones were all normal. And that was when the word “normal” came into play. My dr. would run a CBC and say, “everything is normal.” He would also check my throid and say everything was good. Had a thyroid uptake. Normal. He was convinced that it was hyperthyroidism so he sent me to a specialist, but he said otherwise. My hormones were all normal. But this specialist ran a SED rate on me. Firs time ever. It came back as 49. And my fever was becoming more eleveated at 101 and 102 daily. My PCP dr. just blew me off and so I switched. A new PCP dr. ran a slew of tests. ANA panel. Arthritis; Lymes; Cushings. Everything normal. Except; SED Rate 39 and a new one: C-Reactive Protein: 5.9. But these two tests show nothing but that there is inflammation somewhere in my body. I guess there can’t be infection because it would show in my blood (so someone told me). I’ve also got a girlfriend in UltraSound and the poor thing….I’m going to quit making her scan me….every time she does…she finds something new. So far, we’ve found nodules everywhere. One in my throid. Three in my breast. One in my kidney and one in my lung. And of course I can’t get her in trouble, so I have to nonchalantly go to my dr. and make something up to get him to run a scan on me in that area. I’m sorry I’m telling you my troubles. But it just seems like you are very knowledgeable and I’m grasping at straws. And all any dr. wants to do is put me on more meds. All I want to do is find the “cause” of why I’m feeling the way I do and treat the cause. Not treat the symptoms. My new PCP is going to send me to a Rheumotologist. I’m hoping that this will point me in the righ direction. Someone also suggested that I see an Infectious Diseases Dr. too. I told my PCP to get me a referral, but I haven’t heard anything about that yet. I don’t know. Everything is perfectly normal straight across the board. Except: High SED RAte; High C-Reactive Protein; and High Allergen Levels. And of course the way I feel: I usually describe it as feeling like you have the flu for four years. If you would have any advice…I would appreciate it.
Hello. I just found your blog. It was warm and funny…nice to find at a time when I am feeling hopeless. I have had CFS for 12 years and didn’t reserach it for many years. I just started again and found that a lot of progress has been made with the potential RNase L marker and Ampligen studies. I also learned Ampligen is now available in Canada (I am in Toronto).
All of the articles I read were overwhelming and I needed to take a few naps in between reading them.
For me, the most distressful symptom has been the brain fog. I am just a shadow of my former self now. I’m sorry for whining…I think I am depressed more these days than usual. I try not to think of my old friends - most of whom now have successful careers and a family - and was doing OK until recently.
I don’t know if i should try to get Ampligen since it is still experimental. Maybe I should try Kutapressin?
Well, just thought I’d write to say ‘Hello’ and share my sadness in hopes that it may lessen that way…
Thank you for reading,
Sue
Hi Angel
How are you doing? Did you get anywhere on checking the Lyme disease diagnosis? My partner has had it confirmed using all the tests that I listed for you previously, but we are still debating which treatment to take. It is difficult in the UK where so few Lyme Disease Doctors practise and our national health service is unwilling to recognise the disease as a chronic entity. But the Vit-D is definitely relevant.
Best wishes for a good New Year
Lara
xxx
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