December 4, 2012 at 11:13 am #361
Hi. Clearly, especially when gangly, short of breath, exhausted most of the way to death, and balance challenged – it is impossible to avoid minor scratches, scrapes, something as simple as a shallow papercut as well as the unwanted intrusion into one’s own skin with one’s own fingernail (fingernail cut?).
Here’s my situation: I have a minor abrasion (AGAIN) above my R knuckle – it’s not deep or anything. Of course, with my history, I was mortified when it happened. I’ve never been a fan of cuts aka breach of my protective lining (skin). I HAVE NEVER EVER TAKEN (NOR COULD I IMAGINE TAKING SOOOO LONG TO HEAL). This time, I (OF COURSE) went directly to the sink to wash my hands and then to triple antibiotic ointment. KICKER – I AM ALSO ON AN ORAL ANTIBIOTIC! By now, 36 hours has passed and my finger is significantly swollen, very painful and burning, looks pinkish-red and amber in color and just dreadful. It is not oozing or anything (though I have had other negligible injuries do so) at this point.
Here’s my question: HOW ON EARTH CAN MY FINGER BE ?INFECTED? WHEN IT HAS BEEN TREATED WITH PRECISION ‘PICTURE PERFECT’ METHODS – AND THEN SOME. FIRSTLY- IT’S A SHALLOW WOUND, SECONDLY- IT IS A CLEAN WOUND AND HAS BEEN KEPT SO, THIRDLY- IT HAS BEEN TREATED WITH TRIPLE ANTIBIOTIC, AND LASTLY- (THE REAL KICKER) I HAPPEN TO BE ON AN ORAL ANTIBIOTIC!!! DOESN’T THIS MAKE IT IMPOSSIBLE TO BE INFECTED? IS IT AN AUTOIMMUNE SITUATION? IS IT A HISTAMINE OR MAST CELL THING? WHAT THE ….! THIS IS NOT LOGICAL OR POSSIBLE!
I’m not like this and I don’t get it! What is my wound treatment protocol?????!!!!!-ya know, the one that I can keep within the non-existent ‘manual’ to accompany my ‘new body’. Someone is going to have to help me eventually. I frequently feel as though my best chance of getting answers is to shift my feeble efforts toward a proper autopsy and a wrongful death attorney. At least there could be answers for my kids. I know it sounds like ‘drama’ but I am the epitomy of honesty and I do not exaggerate! My father is 20yr diabetic (5 shot a day and a pile of pills) and when I spoke with him he said he takes a week to heal versus a day or two like other people. A week!- Is that all!!! Well….. I’m taking about 3-4 weeks. What the heck is the deal!!! Why is this happening?!
Seriously, what on earth am I supposed to do when I get a scratch? Please! What is this mess?! BTW, 3-4 weeks was being conservative – I’ve had it take nearly 3 months for a teeny ‘dot’ to expand and then, finally – with treatment, heal.
Obviously, I’m not doing so well here. Not to mention how horrific I feel globally as well as chronically. With the ‘medical care’ that I am currently receiving, I feel as though I am being left to die! I know nobody is going to help me with this. I’ve endured 2-3 years of this mess (drastically worsening health and shoddy medical care like I’ve never seen nor heard of before – a bad combination) and it’s just snowballing out of control and getting worse and worse while I feel more and more ‘sick as a dog’ everyday. Frankly, I don’t even have the energy to advocate for myself. I hope someone can help me with a recommendation or suggestion or idea – anything! Why is this happening?
I think I’ll post bloodwork separately in case that provides any ‘clues’.December 4, 2012 at 11:22 am #3191
This was sent to a friend of mine in a diff state who knows an ID doctor. Yeah, I’m desperate! I compiled this as best I could. There could be other issues but unless there is an H or L, I am too lay to pick up on it. This was a lot of work for me and took a long time to complete. I do hope it makes sense. It is a completely lay interpretation and I feel like crap ‘to boot’.
Ok, here goes.
On a CBC there are 5 catagories for red blood cells
On a CBC there are 2 catagories for white blood cells
Over the last, approx 3 years, approx quarterly, blood has been taken and CBC has been performed.
The eosinophils (aka white blood cells) are elevated in both catagories each and every time, sometimes as much as 3x the max normal guideline.
The red blood cells (aka MCV, MCH, MCHC, MPV) are elevated in 3-4 of the catagories each time over these past years, sometimes the elevations are substantial and nearly double the max normal guidelines.
Pathologist reports have been received back on the one or two occasions that the bloodwork has gone to RML for additional tests performed. Pathologist statements: 279.9 unspecified disorder of immune mechanism, evaluate for possible toxicity, evaluate for megaloblastic anemia, evaluate for macrocytic anemia. This is just what a ‘lay’ person is able to read. Oh, and BTW, none of the pathologist suggestions have ever been followed or even mentioned. Instead, the approach has been to pathologize the patient and dismiss the massive debilitating symptoms and gross decline of health as being somehow fabricated or exaggerated.
TSH fluctuates greatly (within short periods of time) and is either very near low or low OR very near high or high.
Now, to include a few of findings within the more extensive bloodwork done nearly 2 years ago (which, again, have never had any follow up):
HIGH: bun-m, creatinine-m, total protein-m, albumin, ast-m, hdl – all on same sheet and drawn in Oct of 2010. Never addressed. CBC from Oct of 2010: borderline high MCH and MCHC. High MPV. Low NE%. Eocinophils 13.02. Eosinophils .781. TSH 3.03 on Oct of 2010.
TSH 4.635 on Jan of 2011. Accuse me of drinking a glass of milk with medication – not true.
April 11, 2011, TSH is .612. CBC is High MCV and MCH. Low Neut%. High Lymph%. Eosinophils High 11.2. Baso is LOW = 0 or less.
April 27 = ASO is HIGH = 319, more than double maximum.
April 25, 2012 TSH is .313 = LOW.
The pathologist recommendations for one of the abovementioned April 2011 results was: Possible toxicity: Greater than 150 ng/mL. Maybe just jibberish? I have no idea. It’s just a plethora of guidelines about liver, vit D, US National Osteoporosis, etc etc etc. Anyway….
OH CRAP, NOW THAT I LOOK AT THE FOLATE (from 4/27), I WAS EXCEEDING THE MAXIMUM OF 24, espressed as: >24.0 NG/ML. The doctor I saw gave me supplemental folate Rx to take and told me that I was low! Here are the eval notes: evaluate megaloblastic and macrocytic anemia; evaluate alcoholic (WHICH I HAVE NOT HAD A DRINK, EVEN SOCIALLY, IN YEARS – I feel too damn sick to risk additional disability). EVALUATE CAUSE OF INCREASE IN SERUM HOMOCYSTEINE LEVEL. B12 is also high at 1112.
We’re still on the April 25, now CBC: High: HGB, HCT, MCV, MCH. EOS% 9.1 (which is still High). Baso% 1.4 = high.
On to September of 2011: TSH Low: 2.83. Free T3 toward low. CBC: High MCV and MCH. EO% is High. EOS# is High.
On to February of 2012: CBC: High: MCV and MCH. LY% = Low. EO% is High. EO# is High. B12 was checked and is 1363 = High. Folate is >24 (which, I believe exceeds max highest level). Well, here we go again: evaluate megaloblastic anemia and macrocytic anemia. EVALUATE CAUSE OF INCREASE IN SERUM HOMOCYSTEINE LEVEL. The other stuff doesn’t have H for high or L for low and has no reference numbers for the ‘lay person’ to investigate (as crappy health permits, of course).
April 2012: TSH is wnl but on the low side, .549 . CBC: HCT is low. MCH is High. RDW is Low. MPV is High. EO% is High. EO# is High.
November 2012: TSH is .365 . CBC: High: MCH and MCHC. PLT CT – CN is High. EO% is High. EO# is High.
There we go. You’ll probably have to forward the email. Thank God that I now have it in writing since the administrator of the clinic told me I should prepare a report if I wanted my bloodwork to be reviewed, huh.
Let me know what bloodwork might benefit me next go round so that I can request it. I get 20 minutes 2 or 3 times per year with PCP and have to mentally stagger around trying to research enough to advocate for my diagnostics. I have to do bloodwork again in 6-8 weeks. Abovementioned diagnostics haven’t netted any real maintenance or tx plan. Might as well at least do proper diagnostics since needles make me so freakin sick (on top of already super sick) AND my veins lack proper integrity.
I may have more labs but this is what I am finding in the notebook that I now feel the need to keep (which has backfired by netting me comments such as; “You’ve been overdiagnosed” and hypochondraic-ish comments (which I cannot specifically remember).December 4, 2012 at 12:16 pm #3192
Also, I cannot find anything where elevated homocysteine, B12, and folate occur in conjunction with each other. What I can find states that an elevated level of homocysteine is accompanied with LOW folate or LOW B12. Am I missing something? Because my brain often feels severely deprived of oxygen! Can these three elevated arenas; homocysteine, B12 and folate occur simultaneously?December 4, 2012 at 12:34 pm #3193BarbaraParticipant
Hi Give My Daughter the Shot! and all,
You have to collect and analyse your own data (and be your own advocate) what choice have you got.
We are seen by so many medical people that our files are too volumous to assess in their current format. These people generally look at a set of tests results, taken on the same day. RARELY, if ever, do these people look at a sequence of test results (be they blood tests or MRI tests, or whatever) taken over a period of time.
I only discovered the medical signs of my problems by looking at what the same tests look like over a period of time. For instance, on one MRI in 2002 (a few months after my fall) I had a ‘partially empty sella’ (so my pituitary gland was starting to be under pressure), but on an MRI taken in 2004 I had a more ‘fully blown empty sella’ (pituitary now as flat as a pancake). So it was progressing.
Another thing I spotted was by obtaining film copies of all of my xrays taken over the years since my fall and pegging them up, alongside each other in my patio window. I could clearly see the position of my head sliding backwards and forwards – something that had been missed by the medical fraternity – Craniocervical Instability!
With regard to the blood tests, I put them all on a spreadsheet (from 1978 onwards!) Then, bearing in mind my philosophy that, in my opinion not all ‘normal ranges’ are normal. I believe that some ranges include abnormal people, who are not yet symptomatic, or whose symptoms are at such a low level that they themselves assess them as normal.
With this in mind, I looked at all of my tests, looking for those results which were close to the limits, either low or high. I worked out how many tests I’d had, the minimum and maximum result and the average, shown as a percentage of the full normal range. Here’s a sample:-
On the LOW side:
On the very low side:
HCT (at 3%)
PCT (at 5%)
25 OH Vitamin D (55% below normal range)
On the high side:
ESR (ave 127%)
Cardiolipin Abs (IgM)
Protein S free antigen
C Reactive Protein (at 210%)
Lymphocytes run low at (26 tests, ave 12%)
Easinophils were high at (only had 1 test but it was 110% of the normal range)
Basophils were low (only had 1 test but it was 17% below the normal range)
Bicarbonate is always high (to over the normal limit)
Triglicerides usually high
Cholesterol both good and bad are high (but the ratio is low)
Gamma GT phases in and out of normal range (to over the normal limit)
Someone someday might figure out the significance of all this.
Head & Neck Injury (June 2002); Mild Concussion; Post Concussion Syndrome; GERD; Postural Orthostatic Tachycardia Syndrome (POTS); Peripheral Vestibular Dysfunction; Mild Radiculopathy & Small Fibre Neuropathy (right leg & foot resp.); Partially Empty Sella Oct 2002 (worse by Oct 2004); Whiplash Associated Disorder (WAD); 3mm Cerebellar Ectopia (Chiari 0); Cranio-cervical Instability (CCI) with Posterior Gliding (PG) & Cranial Settling (CS); Brain Compression; Retroflexed Odontoid; Stretched/Elongated Brainstem; Mild Scoliosis; Ehlers Danlos (EDS) type 111; Osteoarthritis; Arrhythmias (Bigeminy and Trigeminy). . . and now Mitochondrial Dysfunction, Mineral (Mg,Mn,Cu,Zn,Selenium), CoEnzymeQ10 & Vitamin (C,D,B3,B12) Deficiencies!December 15, 2012 at 10:20 am #3216
Hi Barbara. 🙂
No time like the present. I sure wish there was a protocol for this mess. 🙁 Standardized testing might be nice, huh.December 28, 2012 at 9:48 am #3263
For the first time, a physician within IHS used the magic words, “socialized medicine”. That’s what I have been trapped in while enduring these health nightmares. It’s quite miserable when one has a relatively high IQ (as well as a decent medical IQ for a lay person). I’m confused out of my mind and can only think in my mind that I cannot believe I am going through this in the United States of America. It’s stark 180 degree contrast from my medical care when I was able to earn my own insurance. How sick! When I am desperately in need of proper medical care (for my affected children too), I’m trapped in socialized medicine. I’m completely baffled by the actions of doctors as if they bear ZERO LIABILITY for the health of their patients and border malpractice if not outright malpractice!
I’m fairly certain that I was provided folate supplements and told that I was low when, in fact, my levels elevated to the point of toxicity per the pathologist. This is if I am reading my labs properly – since no doctor reviews them with me. Even the clinic asst. admin. doesn’t know how to pull a split screen for more than one result at a time. Nobody wants to actually review the dozen (approx) per blood draw abnormalities in my blood. Nobody would be that lazy if there were accountability and their patient was as sick as I am. And this is just one small tidbit of my experiences.
Needless to say, I am desperate for protocol for the sake of my children BEFORE our entire country bows to the new world order standards of TORT REFORM and SOCIALIZED MEDICINE. No doctor in their right mind is going to continue in the medical field – no decent one anyway. Who on earth would go to medical school? – At least the pricey, time consuming, and stringent version of US medical school.
Soon, even people with the cash and a lesser deteriorated body to get to the proper doctor, won’t have that option. Anyone know what country is currently producing the creme de la creme doctors?
The uneducated doctors who have ZERO INCENTIVE to ‘get it’ will likely just label the patient as being mentally ill, per new and upcoming DSM criteria:
Not to complain or anything! I’m just making a point that some of us (based upon circumstances) might consider conserving our precious scraps of energy for something more fruitful than advocating for medical care! I’ve been breaking my a.. for around 3 years now and I would be better off with an attorney – that is, IF there is any liability for these doctors either being negligent enough to allow my health to deteriorate unreasonably. OR, if the malpractice is so gross that they have committed acts which have actually lent to the destruction of my health.
All of the tests mentioned on here would take the equivalent of 2-3 months of an 80 hour work week for me to get approved!!! There are so many tests that, in my cognitive condition and with my lack of medical school or a viable physician – I’m screwed – and, if nobody has the conscience to give a s… about me (like my medical providers) – what about my little babies!!!
Speaking of consciences (which I believe makes one human versus mechanical and predatory)…
…..keep in mind that when they’re labeling mental disorders: they call PTSD suffered by a MILITARY HERO a mental illness. they also call what serial killers and sadistic abusers have a mental illness. One probably has a conscience and the other, clearly, does not. A conscience prevents committing atrocities. Serial killers and the like have personality disorders (NPD, psychopathy, sociopathy) but there seems to be little or no delineation or clarity. This means that, if they approve DSM pertaining to us sickies, we’ll fall into a close realm if given a diagnosis of SSD. It doesn’t sound like that will be a tough diagnosis to receive – SSD – Somatic Symptom Disorder.
Sorry for the vent! I’ve already been going through what this article states, that’s all. And, I already hesitate to disclose the magnitude since 20 min 2-3 times per year just doesn’t cut it and I’d sound like a ranting loon to even try to address it all!!! Clearly, I sensed the danger before seeing the article. Or, was it the PCP saying, “You stay right here and I’ll get the social worker” after a miserable and debilitating 3 hour wait for her to find my records and appearing in lieu of my previous PCP with no notice to me.
I’m so fed up! This is why I keep begging for some iron clad diagnostics that I can advocate for – or barely advocate for (given how I’m doing by now). When, in fact, the medical staff that I’m dealing with can’t even understand bonafide diagnostics – NOR DO THEY CARE!!!! I guess it wouldn’t even matter and I probably sense this too. Maybe it would be enough to get me to an educated specialist. I’d probable be better off giving up – considering my circumstances. This is ridiculous – and debilitating. Give up, shut up, and hide!
I think everyone will, ultimately, begin to experience more and more of what I am experiencing. If only I (or one of my children) could be ‘grandfathered in’ with a real doctor……. For all of our sakes!December 28, 2012 at 10:40 am #3264
Oh, and please, anyone who has been or is successful in navigating socialized medicine – please understand that my perception comes from my own personal experience – and ONLY my own personal experience. My ‘fall’ into the healthcare that I am now experiencing has been profound and I am certain that it has had incredibly detrimental affects on my health.
If I’d had any idea that my health would be in the place it currently is or had known of/accepted any of my current diagnoses , I’d have gotten help while I still had proper medical care.January 13, 2013 at 5:17 pm #3337Dr. DianaKeymaster
Hi GiveMyDaughtertheShot!, You express so eloquently what most of us experience and feel, I’m afraid. You are certainly not alone in your experience! One thing that may give you some answers is a “23andme” genetic test. It may point to some of the defects you deal with (I wonder if you may have an MTHFR defect?). We are all a bit different, but we do suffer from CRAZY blood work. With your high eos and basophils — are you taking Zyrtec, I wonder? It does more than just act as an antihistamine. Oh, and are you on a blood thinner? I think that is HUGELY important, considering your history (and mine!). I am on more blood thinners than I ever dreamed possible, but BOY, do they help! If you have vascular problems like most of us, you may have either hydrocephalus or bad circulation to your hypothalamus and/or pituitary, causing many of your problems. Oh, and healing? With the combination of defective collagen, a poor immune system and poor circulation (due to vascular problems and blood thickening), you are looking at difficulty healing FOR SURE. It’s a bad combo… I’ve come to understand that there is just so much to know in medicine, and our problems involve “new science” — most practicing doctors just can’t be on the cutting edge. Researchers know a bit more than they are revealing, as they scramble to work on new prescription medications. I will be revealing quite a bit soon — we need help NOW, before new medications can be FDA approved. I’ve been working on hitting our problems with existing medication. It may not be as convenient (multiple meds are usually needed), but if it works, that is GREAT. Back to being a guinea pig over here. Don’t lose hope, my friend. We are right there with you.
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