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Old 04-23-2011, 08:58 PM   #16
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Re: Diagnosed with addisons may also have lymes disease please help!!!

its been a while since being on here and so much has changed and not for the best, since my last blog ...which all i had was Addison's disease diagnosed ...I now have been diagnosed with Mycolonus Syndrome, Anti-cardiopolin syndrome they thought i had lupus but this is not showing up as yet, My vitamin D level was non existent and was put on 40,000 units a day to try bring it back to normal they havent told me what would cause this but hay they never do. i also suffer with extreme fits like epilepsy seizures but there not they say its due to low blood pressure they have done some tests but my consultant wanted more done but due to money, my doctor put a stop to more test being done Great bet if it was his family member he would have them done , the pain is still horrendous every single day also been suffering with numb fingers again Its strange but most of my pain is down my right side ... Heat changes is a real problem for me . and when the Mycolonus goes out of sink i shake from head to toe, the only way to describe it is that i look like someone with Parkinson's disease this is so so draining i still suffer with the extreme pain every day and the memory fog, i can still sleep for days but still feel exhausted like ive just run a marathon ... I feel like the doctors have given up on me now and to be honest i feel like giving up too. waking everyday knowing that each day is the same if not worse.. Im sill going to fight, i have to as i have to young boys that i adore i cant leave them, (there my life).... As soon as i have enough money i am going to look into getting tested properly for Lyme's as i do still believe this may be the problem to all that is going on, My doctors wont even consider it now as they say they done a basic test which came back clear but as your aware lymes is very complicated and hard to diagnose the longer you have it , i could be wrong but once i get the right tests done then i will know for sure either way, I just need to save up the money first but i feel being tested for this is the right route to go down if it comes back negative then great if not then maybe i can start getting the treatment that is needed before its to late for me...

Please message me anytime if i can help at all even if its just to vent of your frustrations or ask advice about whats happening with me if it helps you then my heart is with you as i know what you must be going through stay strong try to stay positive, i know its hard cos this week for me has been such a struggle with the heat i have found it so difficult seeing every one enjoying themselves in the sun and all i can do is just about drag myself out of bed for an hour before i have to lay down again then when its cold the pain is so bad no matter what time of year it is im struggling to cope ... The doctors may have given up on me but there's still a little fight left in me still thanks to my boys .. Big hugs cheryl's

Please if anyone else is reading this if you can offer me any advice please please do . i dont know where to turn or what to do... Sometimes all i want is to fall asleep and not wake up least then the pain will be gone but im fighting still for now x x x x x

 
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Old 04-23-2011, 09:15 PM   #17
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Re: Diagnosed with addisons may also have lymes disease please help!!!

Ozzyie, sorry you are still going through the wringer....

Reading back over your first post...You had the bullseye rash...Tell tale sign for Lyme.
There is a Lyme support group in Europe. I would contact them and request the name of a Lyme Literate Medical Doctor and get to him. Test for Lyme are not accurate. If i were you I would get money together to get to a Lyme doctor so you can get on the road to recovery.

Many blessings to you.

Jodie

 
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Old 04-23-2011, 09:51 PM   #18
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Re: Diagnosed with addisons may also have lymes disease please help!!!

Thankyou jodie,
...................For replying to my post, your so right i need to get this test done, But im not sure who to go to in the UK, I have had a few people suggest a couple of hospitals but how good they are i really dont know so im not really sure what to do now.. I have a little saved not enough yet thou... From my post you have seen my illness is getting worse each month now i do have good days and bad days but the bad tend to out way the good most of the time now...with the post i have just written i have glossed over most of it or anyone reading would have fallen asleep by now.

The worst thing now is that i am in my wheelchair when ever i go out now, I thought i would of started getting better but they keep finding more things wrong but they dont know why i am getting them, they say its something i will just have to live with and that maybe they will never really know whats going wrong ( THAT WAS HARD TO HEAR & TO EXCEPT)..
Your so right i need to find a good consultant in the UK and quickly before my life is ruined completely or i should say so i can start to live again....To be honest I have hit rock bottom i really do feel like giving up the fight, its so hard to get up every day and just do the basic things like washing up or make breakfast, i so want to be able to be a mum to my boys properly and i feel like im letting them down cos i cant do what most mums can ....
Your so sweet thank you so much for replying so quickly x x x

 
Old 04-24-2011, 05:12 AM   #19
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Re: Diagnosed with addisons may also have lymes disease please help!!!

What is the salt/c protocol never heard of this or if someone has mentioned it i have forgotton...

 
Old 04-24-2011, 09:03 AM   #20
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Re: Diagnosed with addisons may also have lymes disease please help!!!

Hi Ozzie, Sorry to hear you are continuing to feel worse. I've done a lot of research in the last two years and what i've found the most helpful is Dr Cowden's articles. Read up if you can. He basically says you can kill the microbes but if you don't detox you won't get them all- and they come back more resistant. I have no doubt you have lyme, but what i've learned is eventually you will get another coinfection, whether it's from food, pets, human contact. lyme works kind of like HIV (in my opinion) it systematically shuts down your immune system. There's lots of questions i want to ask you, do you have IM capability on here? I've almost given up on dr's (last infectious disease dr pointed to his head and said i think this is your problem). I now take microbials that kill all pathogens (fungus, bacteria, parasites) and i pulse in a virus one (takuna). I also do the salt/c protocolo and i will note to only take purse sodium chloride, i now take the tablets as I'm convinced the metals in the himalayan were building up. CMC makes the salt tablets. check out the lyme photos site, i used to think it was a hoax, but now, unfortunately for me, i've run into some of the microbes they have on there.

 
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Old 04-26-2011, 05:27 PM   #21
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Re: Diagnosed with addisons may also have lymes disease please help!!!

I'm terribly sorry to hear about your situation, Ozzy. How horrible! ... question for you: have you seen a lyme practitioner?

Lyme tests even from the better labs can only be used to support a diagnosis, but a positive test is not needed for a clinical diagnosis.
I've found in folk I know with lyme that in chronic or more severe cases testing positive is even less-likely. Not to dishearten you, just to encourage you to see a Md who would realize this.

If you haven't already I'd suggest reaching out to charity organisations BADA-UK or Lyme Disease Action for info on doctors potentially near you. They also may have information on assistance to help pay for doctors visits if such assistance exists in the UK right now....

It breaks my heart to hear your story and stories like yours. I wish I could help but unfortunately am not in the place to.....

 
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Old 06-02-2011, 06:29 AM   #22
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Re: Diagnosed with addisons may also have lymes disease please help!!!

So sorry i havent replied to anyone since i posted on here but i have been to poorly, had a smaall op on the 27th april only had one of my overian tubes clipped, op went gtreat but 4hrs after i suffered a massive bleed got rushed back into theatre where they had to resusertate me cut me open in a T shahpe right accross my bikini line and up my stomach 28 stapples later 0ver 1 half litres of blood in my stomach and yet they still couldnt find where the bleeding was coming from had a 5 pint B/Transfusion , then a week after had an addision crises because of a water infection of some sort, thoiught i was getting better after antiobotics but now they have stopped the AB im struggling to cope dont feel weel at all over the last few days going to doctors tonight, i feel like im heading for another spell in hospital but i dont feel safe there anymore...
TBH i feel like giving up i do somtimes wish they never managed to bring me back to life as my pain and suffering would be over now but i have my boys to think of....
May be being low in vitimins ie pottassium b12 , iron and so on is whats making me feel so ill or is it the lymes coming in with evenvengence cos my body is sruggling.I dont know anymore and my mind is a blurr :-(

sorry guys im moaning on and on theres far more worse people than me. time for me to stop feeling sorry for my self and think of my boys . feels good to let it out though... DONT KNOW HOW MUCH MORE OF THISI CAN HANDLE ..Im trying to be stong but each day that goes by its getting harder and harder, I have found a good man in my life that makes me smile and i love to pieces and he has taken me in this condition his like my angle sent from heaven .. stugglening to think and write now ..

All my huggs and thoughtss to everyone on this site and there familys, everyone around the world, who are suffering inside averyday with there own battles of l;ife x x x MY HEART GOES OUT TO YOU ALL xxx

Last edited by ozzyie135; 06-02-2011 at 06:51 AM. Reason: misssed some information

 
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Old 06-02-2011, 08:00 AM   #23
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Re: Diagnosed with addisons may also have lymes disease please help!!!

Ozzy you keep fighting to get back up on your feet. Sending you many prayers and lots of good energy your way.

Jodie

 
Old 06-03-2011, 07:23 AM   #24
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Re: Diagnosed with addisons may also have lymes disease please help!!!

So sorry i havent replied to anyone since i posted on here but i have been to poorly, had a smaall op on the 27th april only had one of my overian tubes clipped, op went gtreat but 4hrs after i suffered a massive bleed got rushed back into theatre where they had to resusertate me cut me open in a T shahpe right accross my bikini line and up my stomach 28 stapples later 0ver 1 half litres of blood in my stomach and yet they still couldnt find where the bleeding was coming from had a 5 pint B/Transfusion , then a week after had an addision crises because of a water infection of some sort, thoiught i was getting better after antiobotics but now they have stopped the AB im struggling to cope dont feel weel at all over the last few days going to doctors tonight, i feel like im heading for another spell in hospital but i dont feel safe there anymore...
*** i feel like giving up i do somtimes wish they never managed to bring me back to life as my pain and suffering would be over now but i have my boys to think of....
May be being low in vitimins ie pottassium b12 , iron and so on is whats making me feel so ill or is it the lymes coming in with evenvengence cos my body is sruggling.I dont know anymore and my mind is a blurr :-(

sorry guys im moaning on and on theres far more worse people than me. time for me to stop feeling sorry for my self and think of my boys . feels good to let it out though... DONT KNOW HOW MUCH MORE OF THISI CAN HANDLE ..Im trying to be stong but each day that goes by its getting harder and harder, I have found a good man in my life that makes me smile and i love to pieces and he has taken me in this condition his like my angle sent from heaven .. stugglening to think and write now ..

All my huggs and thoughtss to everyone on this site and there familys, everyone around the world, who are suffering inside averyday with there own battles of l;ife x x x MY HEART GOES OUT TO YOU ALL xxx
P.s i dont know what IM capability is ? sorry

 
Old 12-27-2011, 08:11 PM   #25
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Re: Diagnosed with addisons may also have lymes disease please help!!!

Ozzie

how are you feeling now. I have just survived (survivng day to day) with similar tests, and keep getting worse also and has ruined my life. not really ddiagnosed with lyme but have all the symptoms, but think it is affecting all my organs, 5 bladder infections, chest pain, kidey affected, getting testied for adrenal, lungs feel full at times and widely fluctuating blood pressure, one night all this happens, next night nothing. left flank pain and just blah. did you get anywhere? anything help you out. I feel so bad because i know exactly how you feel, hard to go on some days. Take care

 
Old 03-20-2012, 03:08 AM   #26
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Re: Diagnosed with addisons may also have lymes disease please help!!!

Im not good but thanks for asking,,, had a bad few months , not getting better getting worse as every day goes past im extremely scared. Been admitted to hospital 2x over the last few weeks...

Awaiting test results . they done a renine blood test and another 24hr urine steroid test , Im tachycardic with normal heart rhythm but pulse is racing at 170 whilst doing nothing am shaking 24/7 so tierd all day .. my blood steroid test showed i had over 1000 units of steriods in blood i presume thats why they have done a urine test,, not sure though... also had a endreometorisis biopsy done last week waiting for all theses tests to come back.. ...

dont know why they are doing the renine or urine test im sure i will find out soon also been referred to a cardiologist

all i want is to find out what is wrong and what all these tests mean ....wonder if the doctors have an idea of whats happening but are just not telling me yet until results are all back ... my heart is with you hope your dooing better XXXX

does anyone have any ideas why and what they may be looking for??? if so please leave comments as im 40 scared and all i want is tobe a mum which im finding harder every day being so poorly

 
Old 03-20-2012, 03:24 AM   #27
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Re: Diagnosed with addisons may also have lymes disease please help!!!

please let me know how you get on.... im here for you if you ever need someone to talk to xxxxx

 
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