Aa
CLINICAL ISOLATED SYNDROME
Hi I was recently diagnoise with CIS. What kinds of vitamins I can take?
MEDICAL PROFESSIONAL
Chronic illness patients, including CFS patients, are often depleted in vitamins (especially B complex, C, E, CoQ-10) and certain minerals. These illnesses often result in poor absorption. Therefore, high doses of some vitamins are useful; others, such as vitamin B complex, cannot be easily absorbed by the gut (oral dose). Sublingual (under the tongue) B-complex is a good choice.
Certain minerals are depleted in chronic illness patients, such as zinc, magnesium, chromium and selenium, and these should be supplemented.
Lipid Replacement Therapy is also recommended and can be useful in providing membrane lipids in unoxidized form to repair nerve membranes and mitochondrial membranes that are damaged by heavy metals, chemicals and infections. We recommend NTFactor (you can find this on www.ntfactor.com).
Prof. Nicolson
Certain minerals are depleted in chronic illness patients, such as zinc, magnesium, chromium and selenium, and these should be supplemented.
Lipid Replacement Therapy is also recommended and can be useful in providing membrane lipids in unoxidized form to repair nerve membranes and mitochondrial membranes that are damaged by heavy metals, chemicals and infections. We recommend NTFactor (you can find this on www.ntfactor.com).
Prof. Nicolson
Very interesting,
I had a major spike in severity of symptoms recently and my current doctor has placed me in Bicillin shots for 2 months. Would this type of a medication help to irradicate other types of intracellular bacterial infections other than Lyme? I have an appointment with Dr. Andrea Gaito very soon, she is on the board of directors for one of the major Lyme associations. Sometimes my joint swelling gets so painful that I cant even walk, I have to crawl around or scoot.... its starting to really freak me out. Do you think Gaito is a good choice? Or would you recommend a different type of specialist?
I had a major spike in severity of symptoms recently and my current doctor has placed me in Bicillin shots for 2 months. Would this type of a medication help to irradicate other types of intracellular bacterial infections other than Lyme? I have an appointment with Dr. Andrea Gaito very soon, she is on the board of directors for one of the major Lyme associations. Sometimes my joint swelling gets so painful that I cant even walk, I have to crawl around or scoot.... its starting to really freak me out. Do you think Gaito is a good choice? Or would you recommend a different type of specialist?
Just one more thing, do you know anything about the disease Acute Intermittent Porphyira... Almost all the drs i have been seeing, have said that all my symptoms match porphyria, and they said it makes sense why my aunt had a lot of "fake" siezures during attacks, and why she had no feeling in her legs. But the drs are having troubles saying that it is AIP due to the fact that my 24 hour urin porphyria tests have came back negative, and i truly feel that this is what i have ( also porphyria patients are supposed to avoid being put under for surgeries because it can cause an attack)..
Thanks for the help, i will mention it to my dr!
MEDICAL PROFESSIONAL
I don't think that I am qualified to assist you in finding out what is wrong. However, the fact that this has been around for some time and gone undiagnosed by specialists indicates to me that it is something rare or something that is not being looked at by your physicians.
Since you have an unusual collection of symptoms, I would look for something out of the ordinary. In some cases of intermittent gallbladder and liver pain chronic infections have been found, so it is something to look into. It might explain the relapse after surgery (very immune suppressing) and other events that trigger your symptoms may also be related to immune suppression of one or more chronic infections of the type that we have been discussing on this forum.
Since you have an unusual collection of symptoms, I would look for something out of the ordinary. In some cases of intermittent gallbladder and liver pain chronic infections have been found, so it is something to look into. It might explain the relapse after surgery (very immune suppressing) and other events that trigger your symptoms may also be related to immune suppression of one or more chronic infections of the type that we have been discussing on this forum.
Hi sorry to post this on here too lol, but it wont let me post to the forum. im a 21 year old female. At the age of 15 got severe abdominal pain right below my rib cage on my right side. I had WBC and liver enzymes were elevated so even though my appendix was barely infected they decided to remove it. After my surgery my pain continued for several weeks then went away. Several months later it started again and for the next few years i got it would come back, and everytime it came back it got more severe and lasted longer periods, of time. at that time i was also throwing up and very constipated.Every time i had an attack i would be hospitalized for several weeks then sent home with no answers. i had colonoscopys,gastroscopys and many other tests done but they could never find anything wrong.(Oh and to mention everytime i have get surgery it causes me to go into one of these attacks) about a year and a half ago after i had a misscarriage(, i had gotten a d&c and was put under for it,) and 2 months later i had another attack, they found sludge in my gallbladder and said that was the problem then never removed it. 1 month after my attack i got pregnant with my daughter and had an awesome pregnancy, i never had any type of pain. In april of this year i noticed everytime i went into the sun i would get a rash and my skin would start to blister but i blew it off. Then on May 29th i had hernia surgery, and the following tuesday my abdominal pain started again(the pain was even worse, i discribe it as someone burning my insides with lighter) along with vomiting, a low grade fever and sever constipation along with the rash. I got blood work done and again my WBC was elevated. Went back to emerg the next day and my WBC was even higher, got an ultrasound done and they found my gallbladder very infected. Got that removed within a few hours of being in emerg. When i woke up i still had the pain.. then a nurse came in to check my belly and asked another nurse why i didnt have a drainage bag and the other nurse told her my gallbladder was not infected and did not actually need to come out. I had to stay in the hospital for several days cause i was in horrible pain. I got sent home and my condition became worse. My rash would start with being in the sun for not even 5 minutes, my urin for 2 weeks was a redish brown color and one day it was even red wine color. They did more blood work and found my WBC was now back to normal but my Liver enzymes were very "bizzare" and my lymphs were elevated too. I went for a CT scan and found swollen lymph nodes in my abdomin, but they were barely swollen. I then started to get swollen lypms in my throat and groin. I went for another gastroscopy and again they could find nothing wrong.At this point, i was also getting severe pain in my fingers and arms, and during really bad attacks my shoulders would feel very heavy with sharp pains, and had troubles urinating(i would sit and try to pee but it would not come out or i would only dribble, so my bladder felt full all the time)I also could not take morphine due to the fact that it intensified my pain. The gastrointologist reffered me to an internal medicine doctor and in the refferal letter stated that he was leaning towards, an auntoimmune disorder, vasculitis or Acute Intermittent Porphyria. When my family dr saw the referal letter he decided to try testing me for AIP, but at this point all my levels were almost back to normal so the results all came back negative.
My aunty(on my moms side of the family) passed away a year and a half ago while in the hospital having the exact same attack as me, her levels would elevate, her attacks started when she was 15 and they took out her appendix. She then got severe pain in her legs, her feet started to go numb and over time she had no feeling in her legs, couldn't walk but they could find nothing wrong with her spine. She was also epileptic, but they said a lot of her seziurs were not true one so they told her everything was all in her head. She would also become very constipated and unable to urinate properly.She died in the hospital, having an attack at the age of 33, and in the autopsy they could find nothing wrong with her.We have also found out that my moms cousin has had a few of these attacks too and they have taken out her appendix and gallbladder also... they actually tried to remove her gallbladder twice. She only has these attacks once in a while, but they are the same as mine and my auntys.(she also cannot take morphine because it makes her pain even worse.. and hers also started at the age of 15)...
I had seen the specialist last october, and he said that i dont have porphyria because all my tests came back negative, and that with porphyria you can test at anytime you do not need to be having an attack. That was the first dr that i have ever heard say that you can test it at any given time. I have heard that this disease is very very difficult to be diagnosed with due to the fact that testing has to be done at the perfect time.The specialist then noticed that whenever i get nervous i get a rash on my chest and arms and face, so now he is sending me for a skin biopsy for a disease called hereditary angioedema, which symptoms i do not even have. I am completely fed up with drs not listening to me, the only good dr i have had is my family dr, but he said whatever this is probably rare, and beyond his book of knowledge(he has mentioned lupus too)Every dr that i see either tries to tell me its in my head or its IBS. I know its not in my head, if it "is" then why have i gotten 2 body parts removed that did not need to be, and why do my levels elevate so high??and why do i have/had to 2 other family members that went through the same thing???.... i am going for another hernia surgery right away and will be in the hospital for observation to see if it causes another attack... This is going to be surgery number 6 over the last 5 years, and after this surgery, i have to get my wisdom teeth removed due to the fact that i am "special" and have 4 upper wisdom teeth instead of 2... that will put my surgery count to 7..over 5 years... at the age of 21... so if you could please look at this and tell me what you think, that would be amazing. I have a 13 month old daughter and for 3 months of her life, i missed it because i was so sick in the hospital. I want to know whats wrong with me, and if my daughter get what i have, i dont want to see her go through what i am, i want the answer to be right there for her.. Thanks!!!
My aunty(on my moms side of the family) passed away a year and a half ago while in the hospital having the exact same attack as me, her levels would elevate, her attacks started when she was 15 and they took out her appendix. She then got severe pain in her legs, her feet started to go numb and over time she had no feeling in her legs, couldn't walk but they could find nothing wrong with her spine. She was also epileptic, but they said a lot of her seziurs were not true one so they told her everything was all in her head. She would also become very constipated and unable to urinate properly.She died in the hospital, having an attack at the age of 33, and in the autopsy they could find nothing wrong with her.We have also found out that my moms cousin has had a few of these attacks too and they have taken out her appendix and gallbladder also... they actually tried to remove her gallbladder twice. She only has these attacks once in a while, but they are the same as mine and my auntys.(she also cannot take morphine because it makes her pain even worse.. and hers also started at the age of 15)...
I had seen the specialist last october, and he said that i dont have porphyria because all my tests came back negative, and that with porphyria you can test at anytime you do not need to be having an attack. That was the first dr that i have ever heard say that you can test it at any given time. I have heard that this disease is very very difficult to be diagnosed with due to the fact that testing has to be done at the perfect time.The specialist then noticed that whenever i get nervous i get a rash on my chest and arms and face, so now he is sending me for a skin biopsy for a disease called hereditary angioedema, which symptoms i do not even have. I am completely fed up with drs not listening to me, the only good dr i have had is my family dr, but he said whatever this is probably rare, and beyond his book of knowledge(he has mentioned lupus too)Every dr that i see either tries to tell me its in my head or its IBS. I know its not in my head, if it "is" then why have i gotten 2 body parts removed that did not need to be, and why do my levels elevate so high??and why do i have/had to 2 other family members that went through the same thing???.... i am going for another hernia surgery right away and will be in the hospital for observation to see if it causes another attack... This is going to be surgery number 6 over the last 5 years, and after this surgery, i have to get my wisdom teeth removed due to the fact that i am "special" and have 4 upper wisdom teeth instead of 2... that will put my surgery count to 7..over 5 years... at the age of 21... so if you could please look at this and tell me what you think, that would be amazing. I have a 13 month old daughter and for 3 months of her life, i missed it because i was so sick in the hospital. I want to know whats wrong with me, and if my daughter get what i have, i dont want to see her go through what i am, i want the answer to be right there for her.. Thanks!!!
MEDICAL PROFESSIONAL
Post Viral Fatigue Syndrome is often caused by opportunistic infections that take advantage of acute viral immune suppression. Alternatively, they could be a chronic form of the same infection. In your case family members also have diagnoses that are associated with non-viral airborne infections, such as Mycoplasma species, so it could be that your PVFS is being caused by this other type of infection that took hold because of the immune effects on an acute viral infection.
Sorry for having to hijack this post too but i am unable to post a question to you as well, and was wondering if you might be able to give me some advice.
I am at 30 yr old female who was diagnosed with PVFS in January and was simply told i had to put up with it and it would go in it's own time. But the hand tremors, hip pain, tingly/burning sensations in back and around shoulders and armpits have got worse. ( i know to expect good days and bad days until it goes)
Last week my older brother (37) was diagnosed with ankylosing spondylitis and chrohns disease.
My other brother (34) has psoriasis and so it was mentioned he may be susceptable to spondylitis at some point.
My questions are could PVFS and spondylitis be linked in anyway? Should i bother mentioning to my doc about my brothers diagnosis? and could my PVFS might not actually be PVFS?
Any advice would be appreciated.
I am at 30 yr old female who was diagnosed with PVFS in January and was simply told i had to put up with it and it would go in it's own time. But the hand tremors, hip pain, tingly/burning sensations in back and around shoulders and armpits have got worse. ( i know to expect good days and bad days until it goes)
Last week my older brother (37) was diagnosed with ankylosing spondylitis and chrohns disease.
My other brother (34) has psoriasis and so it was mentioned he may be susceptable to spondylitis at some point.
My questions are could PVFS and spondylitis be linked in anyway? Should i bother mentioning to my doc about my brothers diagnosis? and could my PVFS might not actually be PVFS?
Any advice would be appreciated.
MEDICAL PROFESSIONAL
Many CFS patients are also Lyme patients, as we published in a medical journal a few years back. But in addition, in other publications we showed that almost all CFS patients have one or more intracellular bacterial infections (and some virus infections as well).
These intracellular infections do not normally show up in routine tests, mainly because they are sequestered away from the immune system. Thus antibody tests are usually negative.
You can go to our website www.immed.org to learn more about such infections and their role in many chronic diseases. There is also information on testing and treatment.
Prof. Nicolson
These intracellular infections do not normally show up in routine tests, mainly because they are sequestered away from the immune system. Thus antibody tests are usually negative.
You can go to our website www.immed.org to learn more about such infections and their role in many chronic diseases. There is also information on testing and treatment.
Prof. Nicolson
I can't seem to get post something on this forum Professor Nicolson, it keeps posting it to the community one. Hopefully you can answer my question here.
all tests remain negative for autoimmune and rheumatic diseases and disorders, after one whole year of being sick with fatigue, muscle pains, multiple joint swelling and pain, diarrhea, and vision spots. Western blot showed several "indeterminates". Should I be persuing Lyme treatment? I was bit, and did get sick shortly afterwards.
i am scared and confused. scared of treating myself with Abx incase i don't have lyme, afraid of what will happen if i dont.
all tests remain negative for autoimmune and rheumatic diseases and disorders, after one whole year of being sick with fatigue, muscle pains, multiple joint swelling and pain, diarrhea, and vision spots. Western blot showed several "indeterminates". Should I be persuing Lyme treatment? I was bit, and did get sick shortly afterwards.
i am scared and confused. scared of treating myself with Abx incase i don't have lyme, afraid of what will happen if i dont.
You are reading content posted in the Autoimmune Disorders Forum
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.
