Trying to figure out what is wrong

 
Lillismom1  Back in Dec. when it started to get cold I started having hip

pain. (I fractured my pelvis last year slipping in water and ruled it off as a side effect) I went to the doctor, had X rays, diagnosed with osteoarthritis. I went back a week later because I went to move off my couch and agonizing pain shot through my hip. A couple weeks went bye of strange pains and I started PT. Around the time PT started I started getting lower rib pain (weird I know) and then a pain in my shoulder blade on the same side. I didn't think much of it until it spread to the entire right side of my rib cage and decided to go back to the doctor. He told me he thinks it was something autoimmune and gave me lab work to have done but never did. Over the next 4 days it attacked my entire body in agonizing pain and hasn't left since. I have good days and bad days but for the most part I always hurt and can hardly move. I was able to get a copy of my last lab work and was wondering if anyone could possibly give me an idea of what it is I have to look forward to? What shows off my labs is:
D-dimer 920.08
C Reactive Protein is 3.0
MCV 80
MCH 26.4
RDW- CV 15
Platelet Count 126. (was low last time and now lower)

I looked up as much as I could online but hit a brick wall since it does not give a lot of information. Could anyone possibly tell me what all this medical weirdness means? I'm terrified and don't see the specialist until March 4th and wondering what I have to look forward to.

 

It looks like he was testing the clotting response of the blood and for anemia.

Your MCV and MCH are a bit low suggesting microcytic, hypochromic anaemia
http://en.wikipedia.org/wiki/Microcytic_anemia

the RDW-CV is useful in differentiating between different causes of anemia. In this case it's a bit high suggesting iron deficiency anemia.
http://www.sysmex-europe.com/files/articles/Xtra_RDW-SD_RDW-CV.pdf
(you can skip to the last couple of pages of this document to look at reference ranges and guide for interpretation).

Low platelet count could be related to the anemia, or could be an immune problem.
http://www.mayoclinic.com/health/thrombocytopenia/DS00691/DSECTION=causes

Your CRP is in range.

I'm not sure about the D-dimer result. What are the units of the measurement?

To test for immune disease the first sweep of blood tests should include ESR, CRP, ANA, ANCA, Rheumatoid factor and Immunoglobulins. Were you tested for these?

I should point out that I am NOT a doctor -I've just done a lot of reading around these subjects to try and diagnose myself.

 

I think your doctor is right about it being autoimmune issues you are dealing with. Did you have any serious headaches or flu symptoms at about the time these new symptoms started up? I think glycol ether causes most autoimmune issues. LOW Platelets can also be an autoimmune issue: ITP

I have thoughts on what might help, but I've been asked not to share the web pages I write on the topic. Do doctors suggest things like gamma globulin for autoimmune issues? They do when children come down with Kawasaki Syndrome after carpet cleaning & it seems to help them. Often you hear of immune suppression meds with pain meds, but I suspect this to be less helpful than other choices out there.

... 'started to get cold'

This may be 'the chills' which is part of the symptoms of autoimmune hemolytic anemia. Look up in the medical dictionary what the 8 signs of this anemia are.

 

Thank you guys so much for the info.

Ansti -The D Dimer test says normal range is 00-506 NG/ML. When I was in the ER the first time because my chest hurt they were convinced I had a blood clot in my lung. I had to have a cat scan with contrast to rule it out.
Right now on my desk I have blood work for ANA, CBC, Sed Rate, Rheumatoid Factor, and 2 others he hand wrote on here but I have no clue wtf it says. Heh.

Twilight- My symptoms up to date started back in Nov. I had an issue for 2 months with bed bugs in my apartment prior to that and was receiving steroids shots. I was having a severe allergic reaction to their bites. I also have really bad allergies and I'm supposed to be on steroid nasal spray, antihistamines, and allergy drops. After the bed bug thing went away I was fine for a couple weeks and then I started to feel like I was coming down with a cold that just hasn't gone away. I'm extremely tired all the time and can sleep all day and all night and it doesn't phase me. Plus I have the bad pain all over my body and from the anemia or whatever Ive been FREEZING all the time. When I started feeling weird I went in to my PCP since I have PCOS to do a blood test and my platelets were at 141 and everything else about my CBC was normal.

 

How did the landlord or you take care of bed bugs? It is not advisable to fumigate in areas where people sleep. So, it that was what was done, you would have been exposed to pesticides. (I have heard boric acid springled around bed posts, etc. is a way to go. The little critters crawl through it and it dries them out. Supposed to be like table salt as far as harmful to humans, but don't put on the bed direct, as you don't want that breathed in, either)

The assortment of pesticides that would cause the assortment of symptoms you mention is glycol ether. 2-butoxyethanol is most common glycol ether people would run into and the research says it causes hemolytic anemia. I suspect autoimmune: AIHA. I suspect this is the anemia doctors are looking for in CFIDS, CFS, FM and it is VERY serious. Per definition doctors say they don't know what this anemia is and I think the reason for that is glycol ether causes multiple autoimmune issues to show up at the same time and it messes 'with the numbers.' For instance RDW (random distribution of the red blood cells) will be elevated in this type of fatigue and low when there is joint pain: so you would have two things out of whack, but they would neutralize each other and as to that indicator, doctors would think all is well in both areas. Nothing could be farther from the truth.

Because so much AIHA or IMHA is undiagnosed, I suspect doctors and researchers have no idea what a serious health issue we have in our Nation.

I have heard Rituxan has cured the anemia and cancers that should up subsequently. . . that it is helpful when there are multiple autoimmune issues. I noticed this on another health forum and in two people in our town: a little girl age 3 who had the anemia coupled with NHL and a young man; both issues and remission for both a couple of years later.

I agree with Twilight. Be very careful of any exposure to chemicals. Some research suggests that chemical exposure is one of the leading causes of autoimmune diseases. I have MCTD and I firmly believe it was caused by daily skin contact with MEK, MPK, and chromates. As a plane mechanic, we weren't really taught about the dangers of these chemicals. We all used MEK & MPK to remove aircraft seal (which does NOT come off skin!) from our arms, faces, & hands. I literally used to, well, bathe in it :\ Some of these chemicals end up in your liver for pretty much the rest of your life.

 

All I know about the bed bug incident is that they came in and sprayed. I was told I had to leave my apartment for the day and then come back and open all the windows to let it air out. They just sprayed around the corners and I had to remove my leezard, his tank, and my dog for 3 days. At the time I was sleeping on an air mattress on the floor so its possible I had direct contact with it while I slept? I honestly don't know. I'm just scared because I know what I'm feeling isn't normal. My platelets over the years have slightly dipped a little and have always balanced themselves back out and I've never been anemic. I'm fortunate that the guy I've been seeing at my PCP office has rheumatology experience. He was a PA in office and has ordered the tests to actually diagnose whats wrong while the other doctors Ive seen just referred me to pain management and said "there isn't anything else we can do". So, hopefully by the end of the week I might know something.

 

Sounds like you were exposed to pesticides when they sprayed and what you think is an allergic reaction to bites is instead the effects of the pesticide on you.

They say that autoimmune action on platelets is similar to autoimmune action on red blood cells and that whole blood transfusion is a help in ITP. Now, from what I've heard, the hospitals don't have access to whole blood, but you could ask if an approved blood donor with same blood type as you would donate blood, and ask that you immediately be allowed to have this blood in a transfusion.

Ask the doctor to ask the lab tech to LOOK at the red blood cells and tell them everything there is to know about the red blood cells: 'bites out of them?' SIZE? SHAPE? Membranes? Age? Are they working right? Also check for blood in urine; enlarged spleen; kidney and liver function.

Minty, I think you are right about the chemicals you mention and probably numerous others you haven't given much thought to.

Glycol ethers are solvents, pesticides, teratogens, neurotoxins, poisons. Also have short term memory loss?

 

 

Oddly, yes. Its really horrible. Ive always been kinda ditsy but I'm flunking out of one of my college classes because the lack of memory is so bad. I kind of blamed the percosets Ive been on because they make me loopy. One of my friends tells me almost daily that I don't remember anything and I just laugh.. but apparently I really don't. I have also been having really bad headaches for the past 5-6 weeks.

 

The elevated D-dimer implies that some process is going on in your body triggering the blood clotting response.

It looks to me, just after a bit of quick reading around the subject, that your doctors should be jumping on this pretty quickly as it could cause damage to your internal organs.

One possible cause I've found is autoimmune vasculitis, where your immune system attacks your blood vessels. It's easily treatable with immunosuppressant therapy - my sister gets this and with treatment she is a lot fitter than me!

(In fact, I just googled my sister's illness (Wegener's granulomatosis) and interestingly, you would expect elevated D-dimer with this)

It looks like your doctor has ordered all the right tests - I'd get them done asap.

Good luck!

Ansti is right from what I have read lately. I have a few tips for you to find the answers of your lab results.
I know wikipedia is not a recommended source but the good thing about it is someone has already done the research for it so you can go down to the bottom of the page and look at the citations and check them yourself for accuracy. There are also a few sites that I always go to for their credibility and clear explanations of things without needing a medical dictionary.
Mayoclinic.com
CDC.gov
NIH.gov
pubmed.gov
http://www.labtestsonline.org/understanding/ - this one usually has the best and most thorough explanation of any lab tests. The others are more for looking up symptoms or diseases.
When ever I had to do a Case Study for any of my classes, I always listed the symptoms and then categorized them from the ones that are specific (hallmarks for diseases) and are unique from the ones that are non-specific (general feeling of illness). You may also find benefit in writing out a detailed history of the weeks, months or even years before the symptoms occurred (how far you go back depends on if there is anything significant about it - determining if it is significant isn't easy) and then a detailed explanation of what has happened since it started. I would include places visited, routine, activity, diet and then anything you did that was not routine. This is what I did to figure out what was wrong with me, drug side-effects and other things to give me a good understanding of the pathogenesis of the disease.
I had iron-deficiency anemia and hemorrhagic anemia and I always got very very cold. A cold feeling that seemed to 'radiate' throughout my entire body like I was being frozen. Then randomly I would get ridiculously hot. I just couldn't regulate my body temperature and no matter what I did, I was so tired. I barely had energy to walk to class or walk up the four flights of stairs to my room. My doctors on campus did nothing but it was a small town and they are used to only seeing colds. I sadly was written off for drug seeking behaviors because I had terrible intestinal pains which they couldn't see. My best suggestion to you is don't write this off as the new normal for you and be adamant with your doctors that something is wrong and you need help.

Take Care and good luck to you. I'll be checking up later to see any updates you have to see if I can lend you a hand.

 

Thanks Goose. Ive always had a problem where Im insanely cold for as long as I can remember but never been anemic. I have PCOS and issues where my platelets will randomly drop really low in blood tests then regulate themselves again. I never saw the numbers but one doctor was so concerned he sent me to a hematologist. I went through all the testing for a blood disorder and it came back normal. Up until Nov my labs for the most part have always been perfect and in the normal range until Nov. Ive had the sed rate test done and it was normal from the hospital when I went a month ago. Friday I did labs for ANA and rheumatoid factor. I get the results this Friday and Im crossing my fingers and hoping it comes back negative.

I am not sure about all the test you are being given.. but it is one statement you made..actually two that raised my eyebrow...I have sarcoidosis..and I remember before being diagnosed..the constant fatigue...I mean a shower took alot out of me...we stay tired and sleep alot...dry cough sometimes with phelm..flu like symptoms...entire body aches..bad days outweigh the good ones...and it usually go misdiagnosed for some time before the actually find it..sarcoidosis mimics alot of illness..like cancer, lupus and so forth. I am not a doctor..I am a sufferer but I just wanted to share what I am going though and many others...and it is auto immune.

 

Hmm. I've stopped looking up diseases online because I'm driving myself nuts. Friday I had sed rate, ANA, and rheumatoid factor done and I get the results this Friday. I started pain management today and the PA I saw said with the way it suddenly hit that he thinks it could be a virus or fungus. I know I tested positive for valley fever last year which is supposedly common for AZ natives. I was also told the spot I have in one of my lungs could be from that and its 4mm in size. I'm supposed to have another chest cat scan in August. I've been trying to not think about it until I get the results and stop worrying about stuff. Im seriously goin crazy thinking about it because I'm going to have to change my major for school and a lot of things about my life.

  

Well, I looked up what some choices of fumigants are:
 

 PYRETHRINS one of the solvents and pesticides the gulf war troops were exposed to:  http://books.nap.edu/openbook.php?isbn=030908458X&page=569

    Chemical name

           Pyrethrin I: Pyrethrolone ester of chrysanthemummonocarboxylic acid.

           Pyrethrin II: Pyrethrolone ester of chrysanthemumdicarboxylic acid monomethyl ester.

           Cinerin I: 3-(2-Butenyl)-4-methyl-2-oxo-3-cyclopenten-1-yl ester of chrysanthemummonocarboxylic acid.

           Cinerin II: 3-(2-Butenyl)-4-methyl-2-oxo-3-cyclopenten-1-yl ester of chrysanthemumdicarboxylic acid monomethyl ester.

    Synonyms

           The active ingredients in pyrethrum extract consist of a
    mixture of four compounds in approximately the following percentage:
    pyrethrin I, 40%; pyrethrin II, 36%; cinerin I, 12%; and cinerin II,
    12%. The current commercial product is a more or less purified form of
    the mixture. Highly purified separate isomers although available for research purposes are too expensive for practical use.

    Empirical formula

    Pyrethrin I          C21H28O3

    Pyrethrin II         C22H28O5

    Cinerin I            C20H28O3

    Cinerin II           C21H28O5

    Structural formula

    CHEMICAL STRUCTURE

                                                                       

    Compound               R                        R'
                                                                       

    Pyrethrin I          - CH3              - CH2 - CH===CH - CH===CH2

    Pyrethrin II         - COOCH3           Same

    Cinerin I            - CH3              - CH2 - CH===CH - CH3

    Cinerin II           - COOCH3           Same
 

Yes, most definitely glycol ether type chemicals

Lots of times these components are ignored; said to be safe; don't believe it

http://www.inchem.org/documents/jmpr/jmpmono/v065pr40.htm

https://www.inspire.com/groups/autoimmune-diseases/discussion/trying-to-figure-out-what-is-wrong/?msg_activity=reply_posted&page=last&cmnt_id=768235

http://www.bedbugsguide.com/vikane-fumigation.htm

  well, now, PYRETHRINS
and 2-butoxyethanol, and 2-2-butoxyethanol,
etc

Book 2 of Solvents and Pesticides 'gulf war troops' were exposed to:

http://books.nap.edu/openbook.php?isbn=030908458X&page=569

Do not be lulled into thinking that an OK blood test means the blood is OK. If there are multiple autoimmune issues going on, the 'numbers' don't give the doctor an accurate picture of what you're dealing with

What I Suspect for the Cause of Autism

 

Some research  * and  *

Compare EVOS Robin   to Gulf War Vet Donny   

Suspect Dec 1997 exposure   

Vets of all wars?

Is Ethylene ether in the vapors of explosions?
The analysis of black powder and dynamite. (Man used green toolbox explosives in unrequested packages on an ID tv program shared that when dynamite explodes, ethylene ether is formed. I have often wondered if there is a commonality of harm to vets from all war service WWI to the present)

http://www.valdezlink.com/re/health/anemia/comment.htm#of

 

3-2-10

 

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