Mono or vitamin deficiencies or both or something else?
End of March - 40 yrs. old; Dx'd Mono as well as UTI, flank and low back pain, fatigue, loss of appetite, nausea, depression, weight 129 then 118 two or three wks later; brain fog like I was in my own bubble; memory problems; dark circles under eyes; feeling full all the time even when not eating; chills mostly at night & fatigue; shaky legs; left sided chest pain under ribs; hair loss. UTI treated with CIPRO, fully recovered. Two family members had recovered fully from mono, not me.
April -- start of GERD - never had before & no heartburn, appetite still decreased; burning pain behind left scapula w/arm weakness; Prevacid 2 X day, one before breakfast, one before dinner; started to feel funny while at comp & wanted to roll my head to the side, let it pass because it felt like an adrenaline rush, then felt very relaxed & wanted to relax my head. Stood up from the computer to try to "shake it off," and when stepping foot seemed liked I picked it up too high & floor was far away. Second time more pronounced. Acute burning sensation in stomach, adrenaline rush, relaxation, then feeling of fear, and temp muscle weakness.
May - Appetite a bit better, then gout or pseudogout w/heat begins in right big toe & footpad; continues off and on. Gout, GERD, fatigue, dark circles under eyes seem to occur together. Gout worsens when active. Few petechiae on my upper arms & multiple cherry angiomas appear.
June - Appetite still a bit better; Cravings for chips & salsa, other than that no food appeals to me but salty & even that rarely appeals to me, still ate what I could, gained 5 lbs.
July - GERD worsens; ER visit because I think it's possibly a heart attack. Serious chest pain radiating down back of left arm, BP higher than normal as well as heartbeat. Given a GERD "cocktail," pain resolved shortly thereafter. Tests and x-rays negative. Home w/a GERD diganoses. Cocktail left throat numb & feeling as if lump there for about a week; acute arthritis begins in fingers & toes w/paresthesias, fatigue worsens again; waking up with fingers curled into a ball; bilateral hip pain, as if glued in place, hurts to lay on either hip; after some time requested Medrol due to pain because doctors offered no diagnosis or help. Ibuprofen was no longer cutting it. GERD medication not resolving the issue. Have tried Prevacid, Protonix, Aciphex, Omeprazole and OTCs. Prevacid worked best but still doesn't resolve. Mild dizziness off & on, cleared up in a week or two.
Endoscopy performed without biopsy (grrrr, should have biopsied) -- normal. Not even signs of GERD. GERD still suspected by general. Prevacid continued.
August - dark circles almost daily; more cherry angiomas appearing -- over 50 in a two-month period; BP is getting slightly lower each time they take it 114/74 my usual norm for 10 years is now down to 100 over 60. Odd to me, but not to the doctors. Doctors disregard cherry angiomas. Low back pain off & on throughout whole ordeal but has lessened; Medrol helped arthritis & gout pain subside for about a month and a half. Shortly after, hands & feet got extremely cold especially when exposed to cold. I am also feeling cold more often. Thyroid peroxidase antibodies are mildly high on blood tests ordered by neurologist. His diagnosis after EMG studies was bilateral progressive carpal tunnel which do not currently need repairing. I have lived w/it for years so fine w/me as well. Brought the TP antiobodies to general's attention and he said, retest in 6 months. Frustrated because I have to wait 6 months to maybe find out what is wrong. Right big toe area swells intermittently, hurts to walk on and is heating up again. Doctor says fluid aspiration will do no good, probably gouty arthritis.
Late August - Every test so far other than mono & TP antibodies are normal, including TSH & T4. Mono retested shows a miniscule drop in titers so told I have a flare up. GERD & arm pain w/ weakness continues. Injured that shoulder years ago. Possibly it's being exacerbated by mono? Weeding the yard and every time I stood up, felt like I was going to pass out. Occurring more frequently. Cold a lot especially hands and feet. If I don't wear socks in bed my feet get so cold even under the down comforter & blanket on top of that they wake me up & I have to put socks on; restless leg syndrome off & on most often when sitting & required me to get up. The more tired I was the worse the RLS. Bowels slower but not horrible or painful. Things still moving through.
Neurologist in August had ordered an MRI of the brain & thoracic spine to check for possible MS or other disorders. I also followed up on a CT scan of the abdomen which the ER doctor said he would order if I wanted. I took him up on it. Everything normal but for three hemangiomas on the liver, one near the gall bladder fossa. CBCs with diff, H-Pylori, ESRs, Rh Factor, ANA -- etc. were run a few times over the course of this illness. All normal until the TP Antibodies. Colonoscopy performed two years ago was normal.
Gave up on two generals and went to a doctor recommended to me. Took all my medical records. He spent about an hour going over my reports and asking questions (this is a general physician) and asked me, "Hasn't anyone ever taken your Iron?" I said, nope. He ordered some more blood tests which showed, Iron deficiency anemia by checking Ferritin levels and a severe Vitamin D deficiency. Explains a lot. Not only was I anemic but I had almost used up all my backup iron stores. Vitamin D levels were 11.8.
Why are these tests overlooked in medicine? A simple search of Vitamin D and Ferritin on the web will show that these two deficiencies cover almost every symptom I have, including causing the "GERD" like problems. Perhaps it actually is GERD but can't be resolved because of the deficiencies. I am now on 2,000 units of Vitamin D & one Chromagen pill every day.
I have a test coming this week to see if GERD is actually gastroparesis. It makes more sense to me than the GERD. I am hoping as I raise the levels of vitamins and iron that this GERD issue resolves as well. I am pale in comparison to family members but until someone finally told me I was anemic I really didn't notice because it was so gradual and you start to think you are crazy anyway because I'm pretty sure those two generals did.
Anyone experienced this with mono?
Is it possible I got mono because I was already deficient and it just didn't get that bad until the mono kicked in? Is it possible that the deficiency caused the GERD since it seemed acute or more possible that I had silent GERD that worsened with these issues?
Without yet knowing the exact cause of the iron deficiency, and I'm not thinking it's malnutrition, what other conditions can cause these deficiences other than colon cancer and malnutrition?
Is it possible that for that short of a time I could have become so malnutritioned that it would bring these deficieincies on that quick?
Is it possible that if this were not actually GERD that the medicine given for GERD could have caused the vitamin deficiencies because the acid that I needed for digestion was non-existent?
Has anyone with Hashimoto's thyroiditis experienced these types of issues?
I am 5'3" and now 126 pounds so I'm definitely not anorexic nor overweight. How easy is it really to become malnutritioned if you do happen to eat meats and will eat pretty much anything but just had to cut back for those few short months?
In light of the anemia, should I be more concerned about those liver hemangiomas?
Sorry the post is so long but any stories or advice or thoughts are appreciated.
Got a diagnosis. Well, I did get a diagnosis finally and it makes sense. I did have mono the first time. The mono seemed to have initiated a rollcoaster ride from a condition that was probably stirring even before the mono, i.e., Hashimoto's Thyroiditis. The arthritis pain was actually Raynaud's Phenomenon as I now have hands that show tissue loss as well as have had the discolorations during this time and still do to a milder degree. Who knew? The GERD, unfortunately is probably GERD, exacerbated by the mono as well as unresolved UTIs during this time. The UTIs -- first one requiring three course of antibiotics and the 2nd which I am currently on were probably due to a weakened immune system. I am not malnutritioned but for whatever reason had the iron deficiency anemia and vitamin D deficiency which are resolving due to vitamins and eating better. So I am glad to have a diagnosis. Things are looking up!
Well even though I had no responses, here is my final update on my condition since I finally have a diagnosis 1 1/2 years out. I have Lyme disease. If you have these symptoms, you may well have Lyme disease. Lyme is misdiagnosed often and one of the misdiagnoses is Mono, but there are specific tests they can do to differentiate. If you are told Lyme does not exist in your state, ignore that. There were .8 cases of Lyme in my state last year (that is point 8) so basically not even one whole person in my state had Lyme last year. Hmmmmm. Maybe it's .8 because they donated the internal organs and then diagnosed the Lyme? That's scarey. Just a joke there. Have to make myself laugh now and then.
Testing for Lyme is extremely innacurate and lyme literate doctors are scarce but if you do the proper research you can get help. Hopefully it will not be long before more physicians are familiar with Lyme disease. Most physicians know as much about Lyme as you and I do. Please watch Under Our Skin. It's currently in theaters but should be released on DVD soon. You can watch the trailer on youtube as well as view other people with Lyme disease. Also visit turnthecorner.org and ILADS for accurate information on Lyme disease. I found in my own research that the CDC and the IADS (not ILADS) had what I thought were several contradictions listed in their own information in regards to diagnosing and treating Lyme. They admit their testing is flawed. They even call what is actually chronic Lyme, post-Lyme syndrome and then at the same time Dr. Shapiro states that it's probably due to normal aging. Interesting that they needed to come up with a term called "Post-Lyme Syndrome" when in fact Dr. Shapiro believes this could be normal aging. I suppose it could be if 40 years old is supposed to feel like 85 years old.
Half of the CDC guidelines were based on their own panelists research reports who also have a conflict of interest in regards to Lyme. They either hold patents to a portion of the Lyme pathogen, work for HMOs writing their guidelines for treatment and diagnosing of Lyme and/or work for vaccine companies who stand to make money from the vaccine. It's a very political issue right now, and people are suffering so that others can profit.
So I suggest to everyone the following:
ILADS for accurate information regarding Lyme
Under Our Skin - movie in theaters 2009, DVD should be released late September
Joseph Burrascano's report on the treatment of Lyme disease. After researching on my own I feel he is one of the most qualified physicians in the treatment and diagnosis of Lyme, but you can decide for yourself.
Youtube - View the videos of others with Lyme disease. If you do have Lyme you will find you have so much in common with these people that It will amaze you as it did me.
And please do check the CDC guidelines and check into all of that information as I think anyone can see why the testing is flawed as well as view the contradictions in their own statements.
Search for the Antitrust investigation by the Connecticut Attorney General investigating the IADS who make the guidelines for the CDC.
"Lyme disease is the most frequent vector-borne infection in the United States and is also endemic in Europe and parts of Asia (44). Transmitted by Ixodes ticks, its causative agent, Borrelia burgdorferi, initially propagates locally in the skin before it disseminates hematogenously to other organ systems. Neurological involvement, referred to as neuroborreliosis (NB), occurs in up to 20% of patients and presents as cranial neuritis, meningoradiculitis, or encephalitis (4). It is usually accompanied by a vigorous immune response against the spirochete (42). Typical inflammatory changes in the cerebrospinal fluid (CSF) involve disruption of the blood-brain barrier and pleocytosis consisting predominantly of lymphocytes (17, 46). After antibiotic treatment, most patients recover from acute disease, but in some cases, a chronic inflammation of the brain and spinal cord develops despite a dramatic drop in spirochetal numbers, or even in the absence of bacterial persistence (32, 46). Studies of Lyme arthritis and chronic neuroborreliosis suggest that spirochete-specific T cells cross-reacting with self-antigens may be at least partly responsible for autoimmune mechanisms possibly leading to chronic disease manifestations (8, 12, 25).
The innate and adaptive immune responses to B. burgdorferi have been studied extensively in infectious animal models. In susceptible rodents, infection with B. burgdorferi leads to a variety of organ manifestations, including myocarditis and arthritis (33). Central nervous system (CNS) infection, however, has only been observed in immunosuppressed monkeys that do not exhibit cardinal features of acute human neuroborreliosis (31). Due to the lack of appropriate animal models, the immune response in acute neuroborreliosis is much less defined. Previous studies of European patients with acute neuroborreliosis indicated that activated T cells are recruited into the CSF compartment during acute infection of the nervous system (16, 39, 40) and that a fraction of these cells are B. burgdorferi specific (13, 16, 25, 36). The antigen fine specificities of CSF-infiltrating T lymphocytes, however, were not determined."
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