Found It - I'm off to attempt to sleep so will re-read in the morning.
Thanks Nikodicreta for your kind words about self preservation - one thing I can't seem to find the post on miamifan84. I'll keep looking is in this forum?
have a great day.
Suze62
Hey suze62,
I just lost the post I was ready to send you! Oh well.
Anyway, I'm glad you're seeing the osteopath and taking supplements.
I have no doubt that your symptoms and suffering are not in your head!
So, make sure this does not bother you. Discarding any "undesired" issues,leaves you with more energy to deal with the important ones.
Energy, as abundant as it when everything is flowing well, also happens to be very precious and in limited supply when the flow of things is interrupted.
Please read my recent reply to a fellow Aussie member-miamifan84-
regarding preliminary tests you can do for underlying pathogenic infections.
Let me know if you need any details.
Take care.
Niko
Thank you Nikodicreta,
A wonderful and informative response. As my reply to Allison I have been seeing a cranial osteopath - helps me immensely and is such a non-invasive gentle approach to healing. I also started using magnesium as well as my VitD Forte drops. I am seeing my Rheumatologist mid Feb and I was going to ask her again to test for Fibromyalgia, & Lupus. I don't know where to start about asking what tests I would like her to perform in order to get a dx. In the meantime I will check out the IGeneX Labs site.
Thank you again there are some wonderful friends on this site.
Bless to you.
Suze62
Hi Allison68
Like you to RA runs in my family have you been checked for the Hlba 27 gene? I have been managing this with cranial osteopathy - it helps immensely I also have been waking heaps through the night and feel totally washed out and unable to cope through the day. Anyway I wish you well and hopefully when a dx becomes apparent it will all make sense to us.
take care, bless.
Suze62
Hi to both of you.
It is tough to go about everyday life when you are feeling this way.
One thing to note that may be under-looked.
Surgery is a major stressor, even without complications - shock may I say - and there are two possible health consequences directly relating to this aspect.
One of those is that, one may become vulnerable to triggering infection - not the type attributed directly to the surgery and the enviroment/conditions at the time -but the dormant underlying and perhaps undiagnosed low grade infections, which being opportunistic and invasive, take advantage of the weakness/stress in the body and become activated.
The other consequence is the immune response to this.
The so-called auto-immune concept is -to my opinion- too easily used in medicine today to explain often what cannot be explained!
I certainly do not believe that our immune system becomes defective and turns against itself,each and every time this A/I explanation or dx is given.
There are many extremely difficult to detect infectious pathogens that are able to hide in the tissues and the immune system itself- disguised as normal cells by wrapping themselves with cell membrane!
Once the pathogens get activated, the immune system-if not greatly compromised- gets engaged and detects,identifies and tags the pathogen.
Here is where Vitamin D stores HAVE to be more than adequate, as the cells of the immune system that target "unknown" pathogens need ample
Vitamin D to perform such function accurately. And when the pathogens are disguised as normal cells, the task becomes so much more complex and thus a more generalized response takes place- the so-called Auto-Immune response.
It is as simple as I can explain it.
There are only a few tests that will detect these infectious agents.
And also most specialists are not trained or do not or will not get involved with such issues. The authorities who are running the health care and medical care system seem to have agendas of their own, putting the health and well-being of millions of sufferers -perhaps like you- very low
on the priority list. I can rant forever but...
If you wish to explore this further you can go to the IGeneX Labs website,
ILADS website, immed.org and Dr. Garth Nicolson (A former contributor here at medhelp- you can search using the medhelp search engine.)
Meanwhile:
Stay strong (in spirit), talk to your families and friends, seek support, get educated as much as you can on health matters, strengthen your immune system,meditate daily, as YOU are the ultimate person who will make it possible to return to normal health and resume your life.
It is one of your greatest challenges, if not the greatest!
I made mine "a life or death" challenge
long time ago in my situation and eventually it worked for me greatly!
Let me know if you need any more info post or pm me directly.
Blessings
Niko
Dignosed by Rheumatologist with Rheumatoid Arthritis (runs in my family). He thinks that possible the infection of the surgery may have triggered my immune system and that is why I may have woke up with it from surgery. Blood test positive RF factor....just started Plaquenil.....hopefully it helps! Thank you all for your help and taking the time to answer....hoping to feel better soon!! ;)
My condition has worsened...for the past 5 days I have extreme joint pain in the morning....can barely move (before this was mostly muscle fatigue not joint pain) this returns every night about 7 pm...also rib cage pain. This is very similar to what I experienced when I had Parvo B19...except it goes away middle of the day for several hours. I am thinking Lupus...also for you Suze....the mouth sores are a symptom of Lupus. Have you been tested? I am trying to hold off for my Rheumy appt on Friday if I dont end up in emergency prior.....I am also Vitamin D deficient (as you are...) will update once I see doc....no this is DEF not in your mind...nobody knows I am suffering with this except my husband and mother...I do not like to be sick or complain of not feeling well...I really do feel your pain :/
Hi allison 68 - like you I had my gallbladder removed and complications from that surgery - prior to that I had mycoplasma pneumonia and severe bloating with abdo pain (relieved by yoghurt) these are the only two conditions that I believe preceded my current condition (which they say is seronegative arthritis) excepting to the immediate lead up to my condition I had a virus incorporating diarrhoea. The condition started about a fortnight after this attack and the symptoms that started were severe weakness/fatigue in the feet then creeping up to the ankles I developed achilles tendonitis and weird events of infection in the quick of my nails and on two occasions blisters formed on the roof of my mouth. The fatigue in my legs has been the absolute worse with this creeping muscle fatigue gradually getting higher in both legs initially I could hardly stand in the mornings but now the weakness attacks in the middle of night. The only other suggestion I can think is that I am Hlab27+ and Vitamin D deficient (on D3 forte drops) I am interested in following your post to see what others can contribute and to see if a dx shows up for you, your symptoms are almost identical to mine. Doctors here think it is in my mind - It is 150% not. Best wishes.
Thank you so much. I will let you know what happens at the Rheum. appt next week! I have been eating yogurt as I am trying any natural way I can to get back to normal. If I have meetings or work things I usually take Caltrate-D the evening before as I find that helps with the running to the bathroom...I am going to look for the banana flakes. I don't like to take medication and like to try natural first. I know the surgery triggered something....hopefully the rhem. will know the correct tests to run to find out what it is and maybe get me back on track to feeling human again! I really appreciate your time and getting back to me! Happy Holidays!!
:)
My understanding was the infection was because the gallbladder was so inflamed and there were so many stones all over...the operation took several hours. The surgeon also believed that he may have nicked my bile duct as it was so complex and that they may have had to reoperate.So they were running tests to make sure that was OK. Luckily that was not the case. I also came down with pneumonia. The surgery was a medical necessity because of the huge gallstones etc. and intense pain. The surgeon said if he had known the infection in my gallbladder was so bad he would have put me on IV antibiotics to get it under control before operating. Yes, same neuro...I had Nerve conduction studies both electrical and needle...those came up fine. I had 2 MRI's on my brain (to make sure there were no changes) My regular doctor said I was B12 deficient and Vitamin D deficient so supplementing those (but no difference in symptoms). Yes it was Parvo B-19 symptoms mimicing RA and was barely able to move for a couple of weeks....very scary...that was about 1999...Epstein Barr about the same time... thanks for taking the time to read!
Hey allison68,
Welcome to the forum.
Sorry about all your suffering.
There may be an explanation for all this though.
Could you provide more details about your major infection,
how so the surgery was a medical necessity and what Neurological tests
where performed. Also did you see the same neuro all along, did you get any copies of the test results and was it Parvo B19 -symptoms and when?
A lot of questions but it helps to rule out many factors and causes.
Please post again soon.
Take care
Niko
For diarrhea control many gallbladder-less people benefit from taking cholestyramine (prescription). A natural alternative you may want to try
is banana flakes-if it works for you. The idea is that these products act as binders for bile/acids and it prevents them from causing irritation and consequently diarrhea. Some people also have benefited- to a degree from taking yogurt. You can try it to find out.
(I love making my own from raw milk but in Canada and the U.S it is illegal.)
For B12 try sublingual Methylo-cobalamin. (Cyano-cobalamin is low quality,cheaper and potentially toxic)
For D try liquid D3 emulsified.
Also your magnesium levels may be low. Do not rely on blood tests.
You need a mineral analysis-best is hair analysis to my opinion.
Blood tests will show you are not deficient-only 1% of the body's Mg is in the blood! ( If you need a great formula for Mg supplementation let me know)
Finally it seems that you may have a systemic infection of sorts that has not been detected. I would be willing to bet on the presence of mycotoxins and possibly other infectious agents that are wreaking havoc in various systems in your body virtually undetected!
Your original condition and your surgery were probably the triggers for these, as these pathogens exploit weak and imbalanced parts of the body
to grow and spread.
Please read previous posts in this part of the forum for more info.
If you need more details, post again or pm me directly.
Wishing you well,
Happy Holidays to you and your family
Niko