Naked Science Forum
Life Sciences => Physiology & Medicine => Topic started by: Karen W. on 27/06/2012 07:06:05
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So just how valid are these 2 illnesses? I am being told I have to move out of my home!
After Blood tests and multiple specialty labs results.. The Dr. says that my C4a. Complement Protein markers should be below this reference range of <2831 and that mine comes out well above at 18741*..it is marked as abnormal Flag Code H. She said that the majority of patients at this stage have poor recovery but 20,000 is considered point of no return...as far as recovery. She says she cannot promise recovery but we are going to try.
So giving that I may or may not get better, this
I also Have Chronic lyme of 17 plus years untreated til a year ago...diagnosis has blown many of their past diagnoses up! She said they will have to treat each disease or secondary issue individually.
I want to better understand how these illnesses work against me and why?
So what can you guys tell me about these things that I don't know?
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No takers yet? oh and what is the treatment there in the UK for this same problem?
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Sorry Karren, not sure if it is any help (or relevance) but when my (now) wife was hospitalised following increasingly severe asthma attacks as a student, her doctor ultimately linked to a mouldy environment she was advised to move to drier (mould free) accomodation.
More recently, she was feeling "allergic" when she sat in our living room for any length of time. After scratching our heads as to the cause and systematically washing soft furnishings and dusting the room (a frequent trigger for her astham) we discovered some mould on the back of an old leather sofa which had been pushed up agasint a cold (slightly damp) wall. When this was removed using a proprietry leather cleaner the "allergic" reaction went away.
Similarly, "Farmers Lung" is a condition of hyper sensitivity to mould caused by exposure to particualr fungi - this is increasingly recognised risk on industrial scale green (garden) waste composting sites.
I am very sorry to hear that you have got Lymes disease and particularly that it remained undiagnosed for so long. It is so important to catch it early as the long term effects can be so dibilitating - and it is surprising how unaware family doctors are of it. It does not help that the blood test can be a bit hit and miss.
To anyone else reading this... If you ever get bitten by a Tick and feel ill (particualrly lethargic) with non descript symptons up to 3 months later go to your GP and say you have been bitten by a tick and want them to do the blood tests! Lymes disease is horrible. Ticks need to be removed promptly (so check if you have been wondering around in long grass / other vegetation) and carefully to try and prevent the tick regurgitating toxins into the blood. I really rate the "O Tom" tick twister.
For more information about ticks and lymes disease try http://www.lymediseaseaction.org.uk/about-ticks/tick-removal/ (http://www.lymediseaseaction.org.uk/about-ticks/tick-removal/)
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So just how valid are these 2 illnesses? I am being told I have to move out of my home!
After Blood tests and multiple specialty labs results.. The Dr. says that my C4a. Complement Protein markers should be below this reference range of <2831 and that mine comes out well above at 18741*..it is marked as abnormal Flag Code H.
Instead of two simultaneous apparently unrelated illnesses, (chronic bacterial infection and anaphylactic allergy to mould), what about just one disease process : e.g. the “Lyme disease” actually being an autoimmune disease like Lupus (SLE), (https://encrypted.google.com/search?q=lupus+vs+lyme+disease) and the very high C4a level is due to autoimmunity instead of an allergic response to an exogenous substance like mould ...
anaphylatoxin [C4a] measurement may be a sensitive additional method for monitoring disease activity in SLE
http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2249.1990.tb05227.x/abstract
If you temporarily left your allegedly mouldy home and the C4a remained very high then that would exclude mould as a cause.
http://www.mayoclinic.com/health/mold-allergy/DS00773/DSECTION=causes
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Hi Rd.. Here is something that confuses the soup out of me! They have repeatedly tested me for lupus and actually told me they thought that was the issue so when they sent me down to Standford... Standford set me up with a immunoligist. ( I hope thats right...) He run many tests and said No to Lupus here!
So meanwhile back at home with my doctors, and after much todo We
found some strange skin changes happening on my legs, actually only my right leg... and once again more testing, but this time when they sent me down, he said, that I had both External and Internal Scleraderma.. He said it behaves much like lupus... in that they both can present with very similar symptoms and that treatment was basically the same.. his words were, "If we treat the scleraderma, we would basically be treating Lupus also, as the treatments are the same overall." By then.. as you can see now, I have been totally confused, do I, or don't I believe them...At this point it has made no difference at all in my treatment regieme.. and sense there were so many other things happening that they would just move forward..? Moving on to treating my mystery imflammation...which was. so i have spent a couple years on large dosages of anti biotics which by odd coinsidence slowed the speed down on whatever was going on then my lyme disease was caught and verified.. as well as the tests could do.. I tested positive on many of the various types of Lyme.. Standford said They do not treat Chronic lyme disease.. as if it was not treatable at the stage I was at...My Doctors felt it important for me to continue antibiotics and see as Lyme literate Doctor, because my health was still going down hill, and not getting better week after week.. so This new Doctor Has run numerous tests and found numerous other problems that had not been delt with... including re-evaluating my thyroid that was not working.. After these adjustmennts she began treating each secondary problem individually as the come up.. my lyme Arthritis.. is still progressing fast..but we have finally hopefully got the pain control semi in control.. the latest problem is this Biotoxin Illness. She says I have it and that it is not just mold as the problem.. She said when the rest of the tests were done including several. having to do with my genes..The lab said that I am missing an important gene which is vital to my immune system and that.. my body can flair up as if to start the big fight on bad bacteria etc.. but then it stops.. supposidly this missing gene completes many of the final steps of immunology as far as riding the body of the culprets.. my body can't apparently do this never could she said so she has put me on meds to remove the toxins from the body.. but my problem is that I still feel like crap.. some better then a couple years ago as far as passing out vomiting all the time etc.. I just feel like they are justtotally stumped about the arge amount of. imflammation that my whole body is racked with and suddenly this last month my cardiac markers shot up way too high and I feel totally without energy etc.. she stopped antibiotics called it a herxsmire reaction..sorry for spelling.. anyways.. what you said makes sense to me.. but
is Biotoxin Illness. and mold poisening a real treatable problem or just a
bucket to catch all the crap they can't fix.. or dont know how to fix? If it is
legit I am ok with following treatment, but if not.. ... I am not sure what to
think.. I cannot make heads or tales of it even after repeated talks with the
Doctor...
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Sorry Karren, not sure if it is any help (or relevance) but when my (now) wife was hospitalised following increasingly severe asthma attacks as a student, her doctor ultimately linked to a mouldy environment she was advised to move to drier (mould free) accomodation.
More recently, she was feeling "allergic" when she sat in our living room for any length of time. After scratching our heads as to the cause and systematically washing soft furnishings and dusting the room (a frequent trigger for her astham) we discovered some mould on the back of an old leather sofa which had been pushed up agasint a cold (slightly damp) wall. When this was removed using a proprietry leather cleaner the "allergic" reaction went away.
Similarly, "Farmers Lung" is a condition of hyper sensitivity to mould caused by exposure to particualr fungi - this is increasingly recognised risk on industrial scale green (garden) waste composting sites.
I am very sorry to hear that you have got Lymes disease and particularly that it remained undiagnosed for so long. It is so important to catch it early as the long term effects can be so dibilitating - and it is surprising how unaware family doctors are of it. It does not help that the blood test can be a bit hit and miss.
To anyone else reading this... If you ever get bitten by a Tick and feel ill (particualrly lethargic) with non descript symptons up to 3 months later go to your GP and say you have been bitten by a tick and want them to do the blood tests! Lymes disease is horrible. Ticks need to be removed promptly (so check if you have been wondering around in long grass / other vegetation) and carefully to try and prevent the tick regurgitating toxins into the blood. I really rate the "O Tom" tick twister.
For more information about ticks and lymes disease try http://
www.lymediseaseaction.org.uk/about-ticks/tick-removal/ (http://www.lymediseaseaction.org.uk/about-ticks/tick-removal/)
Thank you Mazurka..Your imformation is helpful.. I have had to become quite active in reading and trying to understand what has happened..I have lost a lot of my arm usage and the last six months it has taken over my right arm to.. but I keep using them as much as possible.. both hips are bad.. right is worse then any... my hands seem to freeze in a claw shape by morning and it takes hours of use stretching etc.. to get them unclinched.. some days
are worse then others.. The pain is so bad as they are pried open.. I try to
roll my hand on a hard surface.. but found that hot water and rubbing them
together in that heat helps immensely.. but the cracking of the hands as they
try to open is creepy and excruciatingly painful...someone said to me awwww that must feel good when they finally pop!..??? no it doesnt feel good like when you were 30 and it actually felt good to allow that pop to release tension..but this popping is debilitating.. You should hear me try to get on
the stool to get up into bed...starts with one pop and stabbing sharp pain.
then multiple popping and stabbing pain from the hip up to my neck and
down to the ankles at times depending on what I am trying to do...It
absolutely stinks....very painful...
I am told it is Lyme Arthritis and because of the advanced stage of the disease.. it will not miraculously disappear with treatment.. although I think if we get some of the inflamation down.. that it will ease some of the pain..but not the deterioration of the bones...
Thankyou for your links and I hope that your wife gets some relief also.. I generally know in the morning weather the body will work badly. ..so so..or good..or not at all.. on a good day a single cane. ..on a so so..two canes on
mid day two canes.. walker rotation till evening unless I am too active thenbed by 7 or on couch legs resting....Now the next to worse day.. is to hobble up hall after calling my sis next door to ask her to walk the dog.. and help me if she can.. and anymore traveling is in my wheelchair especially on bill days or any kind of shopping even on the best day.. the worst day comes on the morning when I slept horrible and just cant move at all let alone wslk.. those days my sistergets a call to help me get turned over and upright.. she also helps me dress and will do food and loo runs... Its totally debilitating and so painful.. would never wish it on anyone else... Its humiliating to have to have someone help you dress or bath or do your toiletries.. so I try really hard to stay as active as I possibly can.. its vital... Lyme can be treated early and here right now the ticks are horrible.. the dog comes in and has to be inspected.. always find at least three usually five or six a trip to the yard.. if you get a tick.. put it in the bag double zip lock it and go to the Dr. a simple dosing of antibiotcs within the first twenty four hours can make the difference...do not fail..to treat.. 16 years untreated because I had not a clue about tics or Lyme diisease..early treatment or late treatment and immense pain suffering and confusion...when it gets in the brain.....thanks for the links.. sorry about my mouth running over.. but me fingers are working good today for texting...YAYYYYY!!!
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he said, that I had both External and Internal Scleraderma.
maybe systemic scleroderma (https://en.wikipedia.org/wiki/Systemic_scleroderma), a.k.a. systemic sclerosis , which is a lupus-like systemic autoimmune disease.
[ systemic sclerosis can overlap (https://en.wikipedia.org/wiki/Overlap_syndrome) with other autoimmune disease ]
is Biotoxin Illness. and mold poisening a real treatable problem
my understanding is that some types of mould can produce (bio)toxin,
but that when exposure to the mould is stopped so does the poisoning.
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Is'nt lyme a type of auto immune or at least kind of behave like one?
So can the lyme be mistaken for or mimick the Internal Scleroderma...?