Aa
lupus, parathyroid or something else????
Hi everyone, I am a 41 yr old female in need of help! I'm writing this propped up on the bed with pillows because I'm so tired I can't cope with sitting at the desk... Right now, I'm not sure if I'm ill, have hypercrondia or just plain, 'losing my mind'. To add to my symptoms, I lost my Dad 4 months ago to Small Cell Carcinoma, I nursed him Singlehanded 24 7 for nearly 4 months.... Also (yep, there's more) 5 years ago I had my ADD and Anxiety Disorder confirmed. For this I take 10mg Rubifen (Rittalin) and 100mg Sertralina daily. These meds are fine and generally work, however this is what has been happening recently, well over the last few years but building if that makes sense?
6 years ago moved back to Spain to live to take care of my step mum, 6 months later after being in the sun, I had a fairly extreme sun reaction. Severe as in have tried everything, steroid, anti histamine, sun block etc etc.... Still it comes up, like white headed blisters, generally on my shoulders, upper and lower arms.
Around the same time, I realized I was having really bad hearing problems, my hearing was checked and was fine, investigations started along the ADHD route, school/ parent reports etc seemed to back up ADD...
Migraines, pain like you would not believe started around this time also....again nothing geared to the Migraine worked. Eventually I found an over the counter Cluster Headache med which works about 75 0/0 of the time.
Bad stomach, meaning diarrhea, and all the pains and cramps that go with it.
Double, blurred vision... Could be I'm getting old right??
Almost like acne type spots on my face, I never ever had spots and guess what? These don't respond to anything the Dr prescribes....
Aches, pains etc etc....
Have had blood tests in the past, and was told they were fine, maybe a little low on Testosterone... That was solved by a really nice injection.... However, as I am Lactose intolerant, I remember asking the Dr if my Calcium levels were ok, he told me they were great!! Really good levels for someone who avoids all Dairy....
A year ago I had to change my job, I worked in a Telesales room, but I could no longer cope with all the noise, I couldn't hear on my phone, couldn't block out the background noise and eventually had to leave.
9 months ago, getting less and less get up and go, seem to be putting on weight but my diet hasn't changed, keep getting kidney stones or renal infections, ache so much, physically and emotionally exhausted, however this is when I was looking after my Dad... At the end of May, my dad had an appointment with a Rheumologist, we were seeing him because my dad had Pulmonary Fibrosis and he was having really bad problems with his hands and feet too... The Doc was scanning his fingers and asking whether his fingers ever went white with cold... No says my dad, but my daughter's do. The Dr asks if I have Reynards, truthfully I don't know, he then says you need to get checked because it can be indicative of an autoimmune disease.... He then told us that my dad had Reynauds, which together with all the other tests they had done. Confirmed to him that my Dad had Lupus. He the. Asked if he could scan my fingers, I agreed and he confirmed that the vascular pattern showed Reynards....
My dads health went down hill so rapidly so of course all my focus and every minute was taken looking after him....
I put the Kidney stones, migraines, aches pains, severe exhaustion down to the stress and upset of what was happening with my dad. I lost my Dad in July, I had already lost my Mum years ago, so I understand grieving, I thought the symptoms were part of the loss process.... Clinically, although I am devastated over losing my Dad, I am 'through' the process and I'm healing.... So maybe the head is ok....? 4 weeks ago I had an ear infection, 3 weeks ago I had a migraine so bad my partner took me to the ER, I could not open my eyes for 2 days, and couldn't get out of bed for 3 days, I have had really intense pain in my big toe joints, so bad I couldn't wear shoes! My stomach is swollen and 'doughy'. Have had a kidney stone last few days, so bad back pain, soooo tired !!! Passed the stone this morning at 8pm... It is now 6pm and although dressed have only managed to get up for around 40 mins....
I used to be so active, I travelled to California in Sept and took my Zumba instructors course while I was there. I was more than physically capable but seem to have been completely exhausted since then.... I have only managed to do 2 classes since and both times came down with a virus and spent 4 days in bed...
Stuff I read on Lupus says about a butterfly rash, I don't have that, but I'm pretty sure I had something very similar on a few occasions in the past....
Any ideas anyone??? I'm currently trying to get an appointment at the hospital, but to be honest, I have no clue what tests I need to be asking for...
Can anyone please please help?
Thank you so much
6 years ago moved back to Spain to live to take care of my step mum, 6 months later after being in the sun, I had a fairly extreme sun reaction. Severe as in have tried everything, steroid, anti histamine, sun block etc etc.... Still it comes up, like white headed blisters, generally on my shoulders, upper and lower arms.
Around the same time, I realized I was having really bad hearing problems, my hearing was checked and was fine, investigations started along the ADHD route, school/ parent reports etc seemed to back up ADD...
Migraines, pain like you would not believe started around this time also....again nothing geared to the Migraine worked. Eventually I found an over the counter Cluster Headache med which works about 75 0/0 of the time.
Bad stomach, meaning diarrhea, and all the pains and cramps that go with it.
Double, blurred vision... Could be I'm getting old right??
Almost like acne type spots on my face, I never ever had spots and guess what? These don't respond to anything the Dr prescribes....
Aches, pains etc etc....
Have had blood tests in the past, and was told they were fine, maybe a little low on Testosterone... That was solved by a really nice injection.... However, as I am Lactose intolerant, I remember asking the Dr if my Calcium levels were ok, he told me they were great!! Really good levels for someone who avoids all Dairy....
A year ago I had to change my job, I worked in a Telesales room, but I could no longer cope with all the noise, I couldn't hear on my phone, couldn't block out the background noise and eventually had to leave.
9 months ago, getting less and less get up and go, seem to be putting on weight but my diet hasn't changed, keep getting kidney stones or renal infections, ache so much, physically and emotionally exhausted, however this is when I was looking after my Dad... At the end of May, my dad had an appointment with a Rheumologist, we were seeing him because my dad had Pulmonary Fibrosis and he was having really bad problems with his hands and feet too... The Doc was scanning his fingers and asking whether his fingers ever went white with cold... No says my dad, but my daughter's do. The Dr asks if I have Reynards, truthfully I don't know, he then says you need to get checked because it can be indicative of an autoimmune disease.... He then told us that my dad had Reynauds, which together with all the other tests they had done. Confirmed to him that my Dad had Lupus. He the. Asked if he could scan my fingers, I agreed and he confirmed that the vascular pattern showed Reynards....
My dads health went down hill so rapidly so of course all my focus and every minute was taken looking after him....
I put the Kidney stones, migraines, aches pains, severe exhaustion down to the stress and upset of what was happening with my dad. I lost my Dad in July, I had already lost my Mum years ago, so I understand grieving, I thought the symptoms were part of the loss process.... Clinically, although I am devastated over losing my Dad, I am 'through' the process and I'm healing.... So maybe the head is ok....? 4 weeks ago I had an ear infection, 3 weeks ago I had a migraine so bad my partner took me to the ER, I could not open my eyes for 2 days, and couldn't get out of bed for 3 days, I have had really intense pain in my big toe joints, so bad I couldn't wear shoes! My stomach is swollen and 'doughy'. Have had a kidney stone last few days, so bad back pain, soooo tired !!! Passed the stone this morning at 8pm... It is now 6pm and although dressed have only managed to get up for around 40 mins....
I used to be so active, I travelled to California in Sept and took my Zumba instructors course while I was there. I was more than physically capable but seem to have been completely exhausted since then.... I have only managed to do 2 classes since and both times came down with a virus and spent 4 days in bed...
Stuff I read on Lupus says about a butterfly rash, I don't have that, but I'm pretty sure I had something very similar on a few occasions in the past....
Any ideas anyone??? I'm currently trying to get an appointment at the hospital, but to be honest, I have no clue what tests I need to be asking for...
Can anyone please please help?
Thank you so much
Hi Niko,
Had my appointment today, I had written every symptom down and by the time I read no 7 or 8... The Dr said I have coeliac disease... Battled to tell him some more, was a battle too, he's very old school Spanish !! His conclusions (apart from thinking I'm really dumb) are this. I am under nourished, my meds are NOT working, the Sertraline needs to be changed, almost certainly why I am gaining weight despite having chronic diarrhea, the levels of meds due to diarrhea are too low to be working on the ADD and anxiety.... When I finally got a word in, he agreed I need to be tested for lupus as well as Celiac, and..... Really don't want this bit, but he is insistent that I need a Colonoscopy so it is booked for next Wednesday, I am so not brave when it comes to stuff like this, but truthfully I am so sick of being ill and in so much pain, that I pretty much don't care. Thank you so much once again Niko, oh and you may be right, my medical terminology is starting to come on leaps and bounds!
Had my appointment today, I had written every symptom down and by the time I read no 7 or 8... The Dr said I have coeliac disease... Battled to tell him some more, was a battle too, he's very old school Spanish !! His conclusions (apart from thinking I'm really dumb) are this. I am under nourished, my meds are NOT working, the Sertraline needs to be changed, almost certainly why I am gaining weight despite having chronic diarrhea, the levels of meds due to diarrhea are too low to be working on the ADD and anxiety.... When I finally got a word in, he agreed I need to be tested for lupus as well as Celiac, and..... Really don't want this bit, but he is insistent that I need a Colonoscopy so it is booked for next Wednesday, I am so not brave when it comes to stuff like this, but truthfully I am so sick of being ill and in so much pain, that I pretty much don't care. Thank you so much once again Niko, oh and you may be right, my medical terminology is starting to come on leaps and bounds!
Oh, I forgot.
The weight gain is because of 2 likely things.
1. JNK gene prolonged activation. Look it up. There are many factors
It's activation leads to weight gain
and unfortunately serious chronic disease.
Discuss this with the Internist,as Glutathione supplementation will render this JNK gene inactive-in time. I.V or Transdermal delivery because of your
digestive and GI issues
2. The body wraps and keeps offensive elements in fat, specially when other elimination mechanisms are impaired.
Take care.
Niko
The weight gain is because of 2 likely things.
1. JNK gene prolonged activation. Look it up. There are many factors
It's activation leads to weight gain
and unfortunately serious chronic disease.
Discuss this with the Internist,as Glutathione supplementation will render this JNK gene inactive-in time. I.V or Transdermal delivery because of your
digestive and GI issues
2. The body wraps and keeps offensive elements in fat, specially when other elimination mechanisms are impaired.
Take care.
Niko
Hi.
Sorry for the technical terms, but please take your time to read and re-read
Underlying low grade infections may stay dormant or low acting for years.
As they are opportunistic they take advantage of stress in your body-from
various causes- and start their invasion at any such time.
You may have Lyme Disease!
As for the EVCO try a very small quantity to test it.
It might be the Herxheimer reaction (die-off effect).
If you are not reactive, gradually increase the quantity to tolerance levels.
It is one of the most functional foods and you will benefit greatly if your body will accept it. It will definitely keep any yeast issues controlled!
Wishing you the best.
Niko
Sorry for the technical terms, but please take your time to read and re-read
Underlying low grade infections may stay dormant or low acting for years.
As they are opportunistic they take advantage of stress in your body-from
various causes- and start their invasion at any such time.
You may have Lyme Disease!
As for the EVCO try a very small quantity to test it.
It might be the Herxheimer reaction (die-off effect).
If you are not reactive, gradually increase the quantity to tolerance levels.
It is one of the most functional foods and you will benefit greatly if your body will accept it. It will definitely keep any yeast issues controlled!
Wishing you the best.
Niko
Hi Niko, thank you so much for your responses, all a bit too technical for me, so I may have to spend some time researching your technical jargon. However couple of things to add.... I was bitten by a tick about 3 and a half years ago, however had all these symptoms before that, they were just milder.... Candidis, definitely worth checking out, I lost count how many times I've had to restock the Canesten. Coconut I love, but this is something my system cannot tolerate, I was so so Ill last tiime I had something cooked in coconut oil it seemed I had a gastric flu. I also have intolerance to nuts generally. Actually we reached the same conclusion on the medication front, I can't possibly be getting the right amount of meds because I dnt seem to digest anything! My question though, is why am I gaining weight??
We have
Rivate medical insurance so last night we travelled to the private hospital and booked an appointment for today with a Dr of internal medicine, I feel I have to start somewhere! I will let you know how I get on, thank you so much once again.
X
We have
Rivate medical insurance so last night we travelled to the private hospital and booked an appointment for today with a Dr of internal medicine, I feel I have to start somewhere! I will let you know how I get on, thank you so much once again.
X
Hey Missditzy,
Well. well. Your meds are not working very well anymore.
You may have an absorption and assimilation issue. Gut dysbiosis is highly suspect! What you ingest is not processed properly so you are not getting the nutrients you need to function properly. You meds are also not doing what they are supposed to do. The effects of dysbiosis are numerous as the body cannot perform the huge amount of processes with greatly compromised nutritional support. Not to mention the large amount of substances, not metabolized, processed and their byproducts and waste not eliminated efficiently.
The new rule is you are what you absorb, not what you eat.
Here's the connection in brief :
Maldigestion-Malabsorption-Dysbiosis,Leaky Gut,
Elimination Problems-Compromised Liver-Weak/Out of Balance Immune
System- Progressive Chronic and Autoimmune Disease.
If I were a gambler I would put a large amount of money on Candidasis.
The second bet would be on underlying Pathogenic Infections such as
Borrelia infection (lyme), Pathogenic Mycoplasma infections, Bartonella and Babesia infections and co-infections.
Restoring your health is a do-able task, however, it will be a serious challenge. It will take a lot more than some tests, diagnostics and meds.
Before any medical treatment protocols are implemented, following a correct diagnosis (that is another chapter), you must bring your body into some kind of acceptable balance. Your immune system must be strengthened. And for this you must address any fungal infection and dysbiosis. My suggestion is to research the SCD program and the GAPS
program as well. It is a very strict approach and you need to be tough with yourself in order to stick with it and succeed and restore your GI and digestive functions- 80% of your immune system is there!
And you may have to be on it for quite sometime. My daughter is still on it after almost 2 years, but she has is functional again.
One word of caution: There's a huge die-off effect at the start that is difficult to deal with,as it is in addition to everything else that is going on, so you will need all the support you can get. It will also take courage, determination, faith and perseverance.
As most carbs are "illegal" Extra Virgin Coconut Oil (EVCO) is a wonderful alternative for energy, as it coverts into energy easy-without any stress on the pancreas-does not store as fat and is Anti-fungal, Anti-viral, Anti-Parasitic and Anti-Microbial. Also used in cooking is safe, unlike any cooking oil and that includes olive oil, because they alter chemically with heat, creating free radicals and consequently inflammation.
It has been my daughter's lifeline.
After you do this research and feel it is for you, I would suggest that you get both books related to those 2 programs GAPS -The Gut and Psychology Syndrome - and Breaking the Vicious Cycle- SCD.
Should you then decide to follow one of the two or a blend of the two protocols, consider joining a a GAPS or SCD forum. The support, information and advice that you'll receive is invaluable.
You may consider to get a diagnosis. Be careful though.
Deal only with the best expert doctors for this. You cannot afford to continue on the same road as you were before.
An LLMD with experience with Pathogenic Mycoplasma, Bartonella, Babessa, Mycotoxins etc. is your ultimate choice of Doctor.
Insist on IGENEX Labs and request a complete Lyme and Co-Infection Panel.
Do not accept any medical treatment (unless very critical!) until you have dealt successfully with the Maldigestion-Malabsorption-Dysbiosis,Leaky Gut issues.
Any antibiotics will have very little effectiveness- and probably contribute to more problems presently- on these pathogens',specially when your immune system is so imbalanced and dealing at the same time with- likely -Candidiasis.
You are still young and have many good years ahead of you.
Make the right choices, empower your self and it will happen.
I feel your hurt and your pain through your words and I hope that some of this information will help you.
Please let me know if you need any additional details.
Feel free to post here or to message me anytime.
My advice does not constitute professional consultation.
Wishing you well,
Niko
Well. well. Your meds are not working very well anymore.
You may have an absorption and assimilation issue. Gut dysbiosis is highly suspect! What you ingest is not processed properly so you are not getting the nutrients you need to function properly. You meds are also not doing what they are supposed to do. The effects of dysbiosis are numerous as the body cannot perform the huge amount of processes with greatly compromised nutritional support. Not to mention the large amount of substances, not metabolized, processed and their byproducts and waste not eliminated efficiently.
The new rule is you are what you absorb, not what you eat.
Here's the connection in brief :
Maldigestion-Malabsorption-Dysbiosis,Leaky Gut,
Elimination Problems-Compromised Liver-Weak/Out of Balance Immune
System- Progressive Chronic and Autoimmune Disease.
If I were a gambler I would put a large amount of money on Candidasis.
The second bet would be on underlying Pathogenic Infections such as
Borrelia infection (lyme), Pathogenic Mycoplasma infections, Bartonella and Babesia infections and co-infections.
Restoring your health is a do-able task, however, it will be a serious challenge. It will take a lot more than some tests, diagnostics and meds.
Before any medical treatment protocols are implemented, following a correct diagnosis (that is another chapter), you must bring your body into some kind of acceptable balance. Your immune system must be strengthened. And for this you must address any fungal infection and dysbiosis. My suggestion is to research the SCD program and the GAPS
program as well. It is a very strict approach and you need to be tough with yourself in order to stick with it and succeed and restore your GI and digestive functions- 80% of your immune system is there!
And you may have to be on it for quite sometime. My daughter is still on it after almost 2 years, but she has is functional again.
One word of caution: There's a huge die-off effect at the start that is difficult to deal with,as it is in addition to everything else that is going on, so you will need all the support you can get. It will also take courage, determination, faith and perseverance.
As most carbs are "illegal" Extra Virgin Coconut Oil (EVCO) is a wonderful alternative for energy, as it coverts into energy easy-without any stress on the pancreas-does not store as fat and is Anti-fungal, Anti-viral, Anti-Parasitic and Anti-Microbial. Also used in cooking is safe, unlike any cooking oil and that includes olive oil, because they alter chemically with heat, creating free radicals and consequently inflammation.
It has been my daughter's lifeline.
After you do this research and feel it is for you, I would suggest that you get both books related to those 2 programs GAPS -The Gut and Psychology Syndrome - and Breaking the Vicious Cycle- SCD.
Should you then decide to follow one of the two or a blend of the two protocols, consider joining a a GAPS or SCD forum. The support, information and advice that you'll receive is invaluable.
You may consider to get a diagnosis. Be careful though.
Deal only with the best expert doctors for this. You cannot afford to continue on the same road as you were before.
An LLMD with experience with Pathogenic Mycoplasma, Bartonella, Babessa, Mycotoxins etc. is your ultimate choice of Doctor.
Insist on IGENEX Labs and request a complete Lyme and Co-Infection Panel.
Do not accept any medical treatment (unless very critical!) until you have dealt successfully with the Maldigestion-Malabsorption-Dysbiosis,Leaky Gut issues.
Any antibiotics will have very little effectiveness- and probably contribute to more problems presently- on these pathogens',specially when your immune system is so imbalanced and dealing at the same time with- likely -Candidiasis.
You are still young and have many good years ahead of you.
Make the right choices, empower your self and it will happen.
I feel your hurt and your pain through your words and I hope that some of this information will help you.
Please let me know if you need any additional details.
Feel free to post here or to message me anytime.
My advice does not constitute professional consultation.
Wishing you well,
Niko
Hey Missditzy,
Welcome to the forum.
You have been through a lot!
"Something else" is right.
It seems that you may have to restore your health from head to toes, cell by cell, system by system.
Widespread multi-systemic conditions a limited to just a handful of causative factors and co-factors.
However, medical diagnosis is a challenge, as some of the initiating conditions are extremely difficult to detect and many tests often return negative or false findings.
I will get back to you when I have more time.
Take care
Niko
Also most doctors do not like the inter-systemic connections
Welcome to the forum.
You have been through a lot!
"Something else" is right.
It seems that you may have to restore your health from head to toes, cell by cell, system by system.
Widespread multi-systemic conditions a limited to just a handful of causative factors and co-factors.
However, medical diagnosis is a challenge, as some of the initiating conditions are extremely difficult to detect and many tests often return negative or false findings.
I will get back to you when I have more time.
Take care
Niko
Also most doctors do not like the inter-systemic connections
Oh I forgot!! I am so stiff in the mornings, I shuffle out of bed, my ankles don't want to work, my back doesn't want to straighten, ,my allergies are really bad too, my partner just reminded me that I'm getting really bad mouth ulcers, similar in my nose too.... Feel like my asthma is coming back and have a cough too, and my finger joints are bigger... Seriously, if I was a dog, some owners would have me put out of my misery!!
Have an Answer?
You are reading content posted in the Autoimmune Disorders Community
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
