Diagnosed with addisons may also have lymes disease please help!!!
oN THE 10/06/09 The doctors diansed me with Addison's disease, Now the doctors have just told me that they believe i may be suffering with lymes disease aswell,How unlucky can i be, But i must say, this makes so much sense to me, as i had the bulls-eye rash in october o8, I also had another rash about 4 years ago, the doctors thought it was ringworm and treated me with steroid cream.
My condition has got so much worse since they put me on these steriods for Addison's. now it has effected my nervous system and the doctors are baffled. They are doing a lymes test, but when i don't know.
Does anyone knowhow true it is , that steriods can make the lymes disease twice as bad? this scares the hell out of me as i cannot come of the steroids because of the addisons disease.
Does anyone know how hard it is to get rid of the lymes disease once it has started to hit the nervouse system?? is it curable?? or is it to late for me if i am in the later stages of this disease? or how long can it take to get completely better.
I have also just done the canadian lymes test, and was so shocked as i scored:
53 out of the 76 symptoms, now i am worried.
CAN ANYONE PLEASE HELP ........................................
Re: Diagnosed with addisons may also have lymes disease please help!!!
Hi Ozzie, a person can get better if they have Lyme. Not cured but better. I have heard once you have gotten the bacteria in you, you will always have it. The trick is, is to raise the immune system. (So I have read)....
I was told I had Addison at one point along my journey. I was told I had many many conditions ....But I had lyme. I know longer have many of the conditions all those doctors diagnoised me with. I do take thyroid medictions because of hypothyroidism.
I didn't do treatment for Addison's. I did have a doctor put me on steriods to ease the inflammation and it was the worse thing any doctor could do to a patient. They are NOT good for a persons system.
If the doctors suspect Lyme they need to treat you for lyme. Lyme is in the Syphillis family. And is "worse" than syphillis.
They need to put you on anitibiotics until your symptoms dissapear. Which could be years.
Re: Diagnosed with addisons may also have lymes disease please help!!!
the doctors started me on a course of antibiotics today even thou my test result came back clear but they only tested me for the boreillo virus and nothing else, my concern is ... is a months course long enuf seeing how i have many nuro problems going on as well as being diagnosed with Addison's also have connective tissue disorder don't know where this appeared from, also have been tested slightly positive for Lupus but they say i have not got this...(its all so confusing) i am so fed up of feeling poorly not just the normal average poorly , that i could cope wiv but i am finding everyday living such a struggle and feel i have no where to turn or that no one is interested (meaning the medical people) they seem to have just given up , this i am finding hard i just want a normal life again ... does any one else feel like this ... if so how do u cope ...please help any advise would be grateful ....
Last edited by ozzyie135; 11-27-2009 at 04:11 PM.
Reason: can anyone help
Re: Diagnosed with addisons may also have lymes disease please help!!!
Lyme can be cured. It's a bacteria, if you can get at the bacteria you will therefore kill it. Although it may be true that some symptoms will remain and take longer to get rid of, it is not true that once you get it you will always have it!! Thats factually wrong!!! The longer you have it----yes, the more difficult it is to get rid of. With proper treatment, i.e. longterm antibiotics i believe you can be "cured". I have known people who have had it and are "cured".
I am dealing with it right now and i do not and will not accept the fact that this will be with me for the rest of my life. I dont feel this way and neither does my LLMD.
Last edited by Administrator; 04-23-2011 at 10:26 PM.
Re: Diagnosed with addisons may also have lymes disease please help!!!
after having it for nearly 2 years now i think, and as i am suffering with many noro problems now slurred speech, memory fog, extreme fatigue, connective tissue disorder , the list just goes on and on , and the pain some days is horrendous and unbearable. does anyone else suffer with extreme pain? As i am not sure if this is linked to the Lyme's or the Addison's disease.....
My big concern is, Would only a three week course of Ab be enuf ,as i have read it can take a lot longer to get it out of your system the longer u have it go undiagnosed... i am frightened that after 3 weeks many of or more problems will arise again, if i don't have a long enuf treatment...
i have been ill for a very long time now and I'm so frightened, some days i don't even know how i get out of bed, let alone trying to bring two young boys up all by my self, i feel guilty they are suffering cos i can know longer do the things with them that i use to, This does upset me, as its not only effecting me it effects my children too in so many other ways....
To be honest it really does scares me that life will never be quite the same again...
well to be honest it wont ever be near normal, considering i have Addison's disease as well, as well as many other auto immune diseases going on now ... I'm so scared frightened and feel so exhausted all the time i would pray, and do anything to just have one normal week again and to have a sort of normal life back, this wld be like a gift from god and I'm not a christian but i do believe miracles can happen , I'm not giving up with out a fight... I'm sure u and many others can understand this, as im sure this is all we wld all ask for in life...even just one normal day wld be fantastic, for me and my boys: angel:
My life has changed so much so fast in such a short space of time i think that's is the most scariest think of all....One valuable lesson i have learned is life is precious, i now cherish everyday every minute with my boys.
what i am scared of is that my doc will only give me a 3 or 4 week course.. The one thing that does concern me and worries me, is it true if u don't get enuf AB the condition can come back worse and with new symptoms...
one thing i do I do know, having Addison's and being on steroids can really aggravates Lyme's disease in a not very nice way..
Last edited by Administrator; 04-23-2011 at 10:20 PM.
Re: Diagnosed with addisons may also have lymes disease please help!!!
ozzyie im am sorry your going through this. i do not know anything about addisons. but bi do know that steroids that lower your immune response are not at all good for lyme disease. for example prednisone.
if you have had lyme for an extended amount of time, 3 or 4 weeks of AB are no where near enough.
Last edited by Administrator; 04-23-2011 at 10:21 PM.
Re: Diagnosed with addisons may also have lymes disease please help!!!
Ozzy,
I am so sorry that you are struggling so much with your help. Coupled with trying to be there for your children....(sigh).
You need to find a doctor who knows what s/he is doing with both lyme and the HPA axis.
first off:
3 weeks of antibiotics will not do anything much in an advanced case of lyme.
Who is treating your Addison's and lyme?
Most decent lyme Mds also know about issues with the HPA axis (adrenal insufficiency included).
I don't know of LLMDs in your neck of the woods so you may want to post here or on another lyme forum asking for lyme-literate doctors or, worst-case scenario--
a doctor who is open-minded and willing to LEARN by working in conjunction with a LLMD in the US or Europe.
Also, BADA-UK is an organization that should have more information on LLMds in England. There's another organization that I can't think of the name of right now, but BADA should be a start.
Addison's disease and other autoimmune diseases, especially it seems those on the HPA axis, are caused by the lyme. It's not happenstance.
The autoimmune response resolves once the infection is eradicated or put in remission from treatment. My "LLMD" doctor (infectious disease specialist who also works with HIV) told me that that should resolve within 2-3 months following getting the infection eradicated and/or in remission. If there's permanent damage, there is damage and then that is managed.
Having Addison's with lyme complicates matters, as JoJo stated, because taking higher doses of steroids suppresses the immune system. It provides opportunity for Lyme and other TBIs to take advantage.
Do what you can to support your adrenals. There is supplementation that does help somewhat. I have "adrenal insufficiency". They are not flatlined, but very low-functioning.
I did well supplementing coupled with low-dose (5mg) hydrocortisone. Not enough to suppress the immune system, but enough to give the adrenals a breather. It's the amount that our adrenals should be making on their own anyway--but aren't! Adrenals supplements like Adrecor and Adroset+licorice root(I believe) are available.
You could also have a thyroid issue going on which may not be necessarily caught by conventional testing. I have adrenal insufficiency and Hashimotos (thyroid) + of course Lyme. A fairly typical combo. Lyme likes to take out the thyroid to make its environment more hospitable.
If Thyroid is an issue, it's important to support the adrenals before treating the thyroid, as thyroid meds adversely affect the adrenals.
There could be co-infections in the mix with all this, so seeing a LLMD is imperative.
Re: Diagnosed with addisons may also have lymes disease please help!!!
I believe some people may be completely "cured" and many will not. The spirochete is crafty and changes form to hide from the antibiotics.
Many of us cannot take all the meds required to get at the three different forms. Many of us have had it for years...20 plus in my case, so the bacteria have become firmly entrenched in our bodies and our immune system doesn't recognize it.
I have to be happy that I am no longer "near death" and I can somewhat control my symptoms yet will more than likely never be cured; damage that I have is permanent.
Even if "cured" it is up to the antibiotics to lower the bacterial load so the immune system can take over. You may still have the Lyme in your body but your immune system will keep it in check
Last edited by Administrator; 04-23-2011 at 10:27 PM.
Re: Diagnosed with addisons may also have lymes disease please help!!!
Ozzy,
Lyme Disease Action is the other organization in the UK (I think it may be in Wales, not sure). But it comes recommended as a resource for folks in the UK looking for assistance with tick-borne disease questions.
Re: Diagnosed with addisons may also have lymes disease please help!!!
Hi 22 dreams...
I forgot to answer your question sorry...... My normal GP is treating the Lames disease, My endocrinologist specialist is treating me for my Addison's, and i also have a nuro specialist in king hospital in London trying to treat my many other nuro problems going on, He is puzzled with me but his not giving up, which i think is what we all need someone to believe us when we say we are not well....He doesn't know about the LD so i will bring this to his attention in Feb when i se him again. He did start me on Keppra medication for my many nuro problems including my muscle jerks and spams, which i must say is working quite well at the moment....
He did suspect ALS at one point... (thankgod i haven't got this) he does still suspect drug induced parkinson's or lupus considering i have a positive reading for lupus but my symptoms dont match up for this.. Think its just a matter of time and wait and see what develops next.. but i think he may well be intersted in the LD when i explain it to him....
thank you so much for your help and support here, it is a real massive help to me, so once again thankyou, hope your having a sort of good day, if that's possible for many of us on here
Re: Diagnosed with addisons may also have lymes disease please help!!!
You should get an appt with a LLMD as soon as possible. I have many of your neurological symtoms, if not all, and some improved, but my tingling fingers/ringing in ears has not even with prolonged treatment. Try pulsing two different abx's or talk to a llmd about it, lyme's can get resistant to one type. a macroglide for a few days and then a type like cefuroxime works pretty good. I would advise not taking a break though, I had to and it got stronger.
Re: Diagnosed with addisons may also have lymes disease please help!!!
First of I'd like to say happy new year, lets hope all of us on here have a better 2010... here's hoping.....
I hope you don't mind me asking!... but how bad did your symptoms come back when you took a break from the AB's, and did you have new symptoms as well?...
The reason i ask this is my 2nd course of CEFUROXIME AB's and they are due to stop in 2 weeks time.... this scares the hell out of me, as i still believe 6week on AB are not long enough for me to eradicate this awful infection...
The other thing is over Xmas i had an abscess in my tooth which had to be taken out on 24th December, was in hospital fore a few days also had another sort of fit. but they tell me its not a fit, everyone that witnessed it said i was fitting even the nice ambulance man that ran to my rescue .. bless him... he stayed with me till it was all over, he held my head so i didn't hurt myself,tried to reassure me when i came round, wish i knew who he was so i could thank him.... he even said i had been fitting. This is the 4t time this has happened to me this year its also been witnessed by many medical teams which they all say i have been fitting but when i then see other doctors they then say its not a fit, I'm so confused to what it could be ! Do you or anyone else suffer with this sort of thing at all... My Abscess and stress combined with the AB's are bringing on really bad side effects at the moment don't know if it to do with Addison's or the Lyme or even both ...
There fore the last 3weeks i have had to triple my HD & FC steroids to cope with it so not to have an Addisons crises, Don't think this is helping the Lyme infection thou.. which is making me AD borderline and I'm struggling to cope so much, this week has been so awful for me had extreme pain so much pain in my knee and leg more than usual and the fatigue has come back with vengeance... also my shakes and tremors are back really badly, and as for my stutter well its so bad never like Ive ever had before..... Nearly had to press my life line last nite as i cld feel my self going unconscious managed to take extra steroids which resolved it slightly but I'm still struggling to cope... Had to explain to my 2 boys last nite that if i pass out and they cant wake me then to press my lifeline button and call nanny. i haven't felt this bad in months but it cld be my body trying to deal and fight off the 2 conditions at the same time...
Don't know if this is a good or bad sign, but I'm looking at it as a good thing as it may mean my bodies fighting back at last .. will just have to ride the storm and hope it doesn't get any worse.. either way I'm not giving up ...
sorry for such a lengthy reply...happy new year to all
Re: Diagnosed with addisons may also have lymes disease please help!!!
Hi Ozzie,
First of all, happy New Year, sorry to hear you're not feeling well. I again want to stress it is important to find a llmd. I took a break of 23 days to fight a yeast overgrowth. At the time I was on cefuroxime and flagyl. cefuroxime really messed up my intestines, make sure you take probiotics daily. My neurological symptoms got much worse, anxiety, trembling fingers when using the phone, slow thinking. I actually never noticed the anxiety before my break from abx. I also can feel it in my heart now, I never before could. When I take my abx dose I can feel it relieve the feeling in my heart, kind of scary for me. I'm not on mepron/zithro/flagyl to treat likely babesia.
I really think the seriousness depends on how long you've had the illness, the bacteria have more time to get deeper in the body. After this I'm going to try a combo, clarimithracin/doxy, I hear it's a very good combination.
One more thing, don't rule out that lyme caused the addisons. They are testing for lack of a hormone which lyme can cause. Only a llmd would believe this unfortunately. If you have had for awhile, you will need a flagyl like drug, they are believed to be "cyst busters" to help with the dormant bacteria. I'm researching lyme biofilms right now... Let me know how you're doing.
Re: Diagnosed with addisons may also have lymes disease please help!!!
hi Ozzyie135, I feel your pain, I'm a 40 yr old mom and wife and I think taking it day by day is the only way and if you are getting out of bed and being a mom you should be very proud of yourself and pat yourself on the back everynight for just getting your feet on the floor and taking care of your childrens needs no matter how you get it done. The guilt is the worst for your symptoms, give yourself a break and keep researching, praying, seeing Dr.s and getting out of bed one day at a time. Try to stay positive and good luck
Re: Diagnosed with addisons may also have lymes disease please help!!!
I have read your info with interest and hope you still look at this post. I too am thinking i am going through waht you did and want to know how you are making out. I was bit in 2008, and now am having problems with adrenal glands, joint pain, bone pain. When looking up what causes adrenal function, i noticed Lyme disease and remembered my horrible rash, which was treated with cream, and am scared they are connected. Please let me know what you have been through since you posted, addisons, and an additional info you can possibly give me, thanks for anything you provide.
The following user gives a hug of support to Smudgelady: ozzyie135 (04-23-2011)
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
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
The following user gives a hug of support to jojo: ozzyie135 (06-04-2011)
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
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.
The Following User Says Thank You to kolesj81 For This Useful Post: ozzyie135 (06-04-2011)
Diagnosed with addisons may also have lymes disease please help!!! 
