Aa
Aa
A
A
A
Close
1511477 tn?1290493785

Undiagnosed for 13yrs

Hi there everyone!
I started having fatigue and brain fog 13yrs ago and about 4yrs ago i started getting pain and strained feelings through my back. 19mths ago i went to hospital with enlarged liver, no answer. MRI showing activity suggestive of MS..diagnosed then un-diagnosed now they 'wait'. Porphyria tests show high red cell porphyrins..but cant say porphyria! my question is does anybody have any ideas what can cause liver 'issues', neurological problems, fatigue, weight loss and loss of general well being?!
7 Responses
Sort by: Helpful Oldest Newest
Avatar universal
Are you in Australia?  Here is a link to a Lyme organization in Australia:  http://lymedisease.org.au/index.html .  It is best to consult a "Lyme Literate" physician as many physicians do not recognize Lyme.  Good luck.
Helpful - 0
Avatar universal
Your symptoms are consistant with Lyme disease.  My husband is currently undergoing treatment for chronic (late stage) Lyme disease.  He has all of the symptoms that you describe including enlarged liver, enlarged spleen, elevated creatinine, elevated CPK, brain fog, fatigue, joint pain, and brain lesions.  Lyme is a bacteria that is transmitted by a tick bite.  Lyme is treated with antibiotics.  Please consult a physician.  There are blood tests for Lyme disease, however, in its late stage, the tests are very unreliable.  Here are some Lyme organizations that may be helpful to you.  www.lyme.net, www.lymediseaseassociation.org, www.ilads.org, http://aldf.com.
Helpful - 0
Avatar universal
i am sorry but it is not right to think of liver cancer and scare linkedlass....u cant have symptoms of liver cancer for 13 years...liver cancer is a swift killer....
Helpful - 0
1511477 tn?1290493785
Thank you for that. When they found the ill defined area in my liver, it was decided that it wasnt a concern at all and i had no 'markers' for cancer. I had an update a year ago and it was still the same and still ill defined.
I raised the concern because of that porphyrin result now (not done back then in 2009), and the creatinine levels with my neurologist as he seemed to flip me off the other day, and he said no problems on the report.
However, i have experienced this before and then found out there was a reason to at least follow up..i am due for a CT again.
Thank you for the concern. my mother had liver issues and fatigue problems, mims me in a way, or i her, but she then drank her sorrows away and passed on in 1987 from everything bursting. I think there could be a connection because she was sick before she was an alcoholic and i am not, i dont drink except for xmas!

Inkedlass
Helpful - 0
351246 tn?1379682132
MEDICAL PROFESSIONAL
Hi
Welcome to the MedHelp forum!
Since you have high porphyrins, enlarged liver, fatigue and brain fog etc, you must consult a hepatologist immediately. I do not wish to scare you, but there are chances of liver cancer. Other than that similar symptoms are also seen in chronic fatigue syndrome and kidney problems.  Take care!
Helpful - 0
1511477 tn?1290493785
Thanks for that information. Is that specific to Lyme or not?  How is it tested for, i thought they had done that in their rounds of tests like the ana for lupus etc?
I will follow up on that advice, thanks!

Inkedlass
Helpful - 0
Avatar universal
I have some of the same symtoms as you do. I have Lyme disease.If you have heard of it you probaly think Lyme is not in Australia. But it is. The reason is because Lyme is being passed from human to human. The Lone Star tick also known as the deer tick which is only found in the USA was the original carrier of this bacteria which was injected in it approx. 60 years ago. Since then this bacteria has spread like wild fire all over the world.

I have something for you to do that is easy ,affective and not a drug.

Try this:

Take 1/4 teaspoon(1 gram) sea salt with 500 mg tablet of vitamin C.
Take these together and this would be one dose. Take one dose on day one. Take 2 doses on day 2 and so forth. Take this until you get up to 6 doses. You may feel some pain or relief from this, what this C/salt treatment does is kill bacteria in your body and when your body trieds to get rid of it it may create pain but this is normal and part of the healing process. So if experience this don't be alarmed.

Let me know how it goes and if it works you can increases your doses per day. Also, divide up the doses through out the day evenly,


fred
Helpful - 0
Have an Answer?

You are reading content posted in the Undiagnosed Symptoms Community

Top General Health Answerers
363281 tn?1643235611
Nelson, New Zealand
1756321 tn?1547095325
Queensland, Australia
19694731 tn?1482849837
AL
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Discharge often isn't normal, and could mean an infection or an STD.
In this unique and fascinating report from Missouri Medicine, world-renowned expert Dr. Raymond Moody examines what really happens when we almost die.
Think a loved one may be experiencing hearing loss? Here are five warning signs to watch for.
When it comes to your health, timing is everything
We’ve got a crash course on metabolism basics.
Learn what you can do to avoid ski injury and other common winter sports injury.