Re: A puzzling illness/ any ideas?

[Guest guest]

I was in a similar situation for 6 months but without severe fatigue.

However the doctors wouldn't really investigate things like my night

sweats because my CR induced low body temperature masked the

temperature increase. Plus After the infection was treated I gained 5

lbs (when my temp dropped back to 36.1 degrees C).

Anyway the symptoms I had were kind of vague, however I had these

night sweats for 6 months and in my case they stayed after a dental

infection which was treated with antibiotics then a root canal.

However the infection was still there for 6 months and I sort of knew

it because of the night sweats (the dentist said it was gone all this

time - he was wrong!). Finally I got the tooth taken out and my

symptoms went away and night sweats stopped.

I'm not saying that he has a dental abscess, but there might be an

abscess somewhere or some sort of low grade infection. I would take a

trip to the dentist though and check for infection via X -ray as I've

read and experienced that these are not always painful and obvious.

Try the following:

C reactive protein

ESR

Urine analysis

Stool analysis to look for virus, bacteria, parasite etc...

White blood count

Anti Nuclear antibody test

The doctor has probably listened to his chest for signs of infection.

Plus I would demand ANOTHER Lyme test (western blot?) . If you read

peoples stories sometimes it doesn't come back positive until 3-4 tries!

Also does he have joint pain at all?

I've researched these Fever of unknown origin and from what I could

tell the average time before these disappeared was 6 months if

infection related.

I assume hes also been on a broad spec antibiotic? and the night

sweats didn't subside?

And by the way, Chronic fatigue Syndrome is diagnosed when other

things are ruled out. There isn't an actual test for it.

Keep us updated

Matt

>

> Folks: I just found out that a young relative of mine has been ill

since

> June and the doctors are stumped. So on the off chance that anyone

here has

> any ideas of what could be wrong with him, here goes:

>

> He's very young, late 30's and been a vegan for the past few years.

For the

> past week he's eating some fish and meat due to anemia which was

discovered

> during dozens of tests to try to figure out what his ailment is

>

> Weight 190#, 6'3 " .

>

> Fevers, night sweats, extreme fatigue, muscle pain (which when he

first got

> sick were only in the am, but now he is in pain all day). Also a

" thorny "

> feeling in his scalp.

>

> After an initial weight loss, his weight is now stable and his

appetite is

> OK. But he is feeling awful and was hospitalized just last week.

He is now

> home.

>

> Every test under the sun has been run on him and everything

including lyme

> disease, mononucleosis, chronic fatigue syndrome as well as cancer

has been

> ruled out. (Although it is my understanding that the lyme disease

tests are

> not always accurate). He goes back to the infectious disease specialist

> next week.

>

> The doctors are telling him that he might have " fever of unknown origin "

> (IOW they don't know what's wrong with him) which often just " goes

away " .

>

> He is going to an excellent medical facility, Duke University Medical

> Center, down in North Carolina.

>

> TIA for any comments.

>

[Guest guest]

Good luck and best wished Fran.. The human body is complex and and doesn't always reveal what is causing the problem easily.JW.. I read an interesting tidbit on C in the paper yesterday. Some German researchers are experimenting with a zero carb diet to reduce tumor metabolism.  They have only a limited number of data points since they can only work with patients who have no other treatment options, but have seen a few promising results. Like so many cancer treatments this may not be a knockout punch but another tool to weaken the cancer.We're all going to die of something...JR  On Sep 22, 2007, at 12:57 PM, jwwright wrote:A friend of mine worked in his son's medical office - his son and daughter in law are both dr's. In Feb 2 yrs ago she said he had anemia and they didn't know why. He died in April of kidney cancer.Hopefully, it's not that but a cancer hospital is a good second opinion.Those symptoms are reminding me of cancer.When I or my relatives get "sick" we eat raw eggs in milk. Regards.  FW: [ ] A puzzling illness/ any ideas?This is an e-mail from my relative’s wife discussing the symptoms at a bit more length: He has been experiencing the following symptoms for the past few months:FatigueMuscle painDaily fevers (up to 104 degrees on a few occasions but typically between 99 and 103 degrees)Hot and cold spellsNight sweatsIntermittent loss of appetite“Thorny” feeling in scalp (He thinks this is a physiological manifestation related to stress. I.e., the muscles in his scalp have “tensed up” as his body fights the infection.  Not unlike, say, a tension headache, perhaps.) He has undergone extensive testing which includes the following (but certainly not limited to): TBHIVEpstein-Barr/MononucleosisHepatitis B & CLyme; RMSF; Other common tick-born bacteriaWegener’s DiseaseLupusEndocarditis He was admitted into Duke University Hospital for a week of observation and testing.  While he was in the hospital, multiple (daily) blood samples were taken at “peak fever” times – still, yielding no bacterial/viral/fungal culprit.  He was extensively studied (and tested) by rheumatology, hematology, infectious disease, nephrology, urology, and general medical teams.  Bone marrow and kidney biopsies yielded no positive results.      He has taken a five-week course of Doxycycline – which yielded no changes/improvement in his symptoms. His red and white cell count are also low.  His “inflammatory markers” are also consistently elevated. So, we do know that he is fighting something… His blood pressure has been slightly elevated for several months now. He has been on a vegan diet for about three years – eating fish occasionally.  Until recently, he exercised at least five days a week (riding 6-8 miles a day on his bicycle, plus swimming and light weightlifting at the gym in the evenings).   He spends a lot of time outdoors. Tick bites are fairly common for him.  He has had at least three bites this year.  His initial “gut” suspicion was that he has “Late Lyme Disease”    He has been a strict vegan for a few years. But over the past week has been having beef, fish (salmon) and dairy (milk, yogurt and cottage cheese and various cheeses) to see if that would make him feel better. The doctors did tell him that he is low in iron and that he is anemic. As a result, he has been taking iron pills for the past five days.  ------------------------------   Folks:  I just found out that a young relative of mine has been ill sinceJune and the doctors are stumped.  So on the off chance that anyone here hasany ideas of what could be wrong with him, here goes:He's very young, late 30's and been a vegan for the past few years.  For thepast week he's eating some fish and meat due to anemia which was discoveredduring dozens of tests to try to figure out what his ailment isWeight 190#, 6'3".Fevers, night sweats, extreme fatigue, muscle pain (which when he first gotsick were only in the am, but now he is in pain all day). Also a "thorny"feeling in his scalp.After an initial weight loss, his weight is now stable and his appetite isOK.  But he is feeling awful and was hospitalized just last week.  He is nowhome.Every test under the sun has been run on him and everything including lymedisease, mononucleosis, chronic fatigue syndrome as well as cancer has beenruled out.  (Although it is my understanding that the lyme disease tests arenot always accurate).  He goes back to the infectious disease specialistnext week.The doctors are telling him that he might have "fever of unknown origin"(IOW they don't know what's wrong with him) which often just "goes away".He is going to an excellent medical facility, Duke University MedicalCenter, down in North Carolina.TIA for any comments.     ------ End of Forwarded Message

[Guest guest]

A friend of mine worked in his son's medical office - his son and daughter in law are both dr's. In Feb 2 yrs ago she said he had anemia and they didn't know why. He died in April of kidney cancer.

Hopefully, it's not that but a cancer hospital is a good second opinion.

Those symptoms are reminding me of cancer.

When I or my relatives get "sick" we eat raw eggs in milk.

Regards.

FW: [ ] A puzzling illness/ any ideas?

This is an e-mail from my relative’s wife discussing the symptoms at a bit more length: He has been experiencing the following symptoms for the past few months:

Fatigue

Muscle pain

Daily fevers (up to 104 degrees on a few occasions but typically between 99 and 103 degrees)

Hot and cold spells

Night sweats

Intermittent loss of appetite

“Thorny” feeling in scalp (He thinks this is a physiological manifestation related to stress. I.e., the muscles in his scalp have “tensed up” as his body fights the infection. Not unlike, say, a tension headache, perhaps.) He has undergone extensive testing which includes the following (but certainly not limited to):

TB

HIV

Epstein-Barr/Mononucleosis

Hepatitis B & C

Lyme; RMSF; Other common tick-born bacteria

Wegener’s Disease

Lupus

Endocarditis He was admitted into Duke University Hospital for a week of observation and testing. While he was in the hospital, multiple (daily) blood samples were taken at “peak fever” times – still, yielding no bacterial/viral/fungal culprit. He was extensively studied (and tested) by rheumatology, hematology, infectious disease, nephrology, urology, and general medical teams. Bone marrow and kidney biopsies yielded no positive results. He has taken a five-week course of Doxycycline – which yielded no changes/improvement in his symptoms. His red and white cell count are also low. His “inflammatory markers” are also consistently elevated. So, we do know that he is fighting something… His blood pressure has been slightly elevated for several months now. He has been on a vegan diet for about three years – eating fish occasionally. Until recently, he exercised at least five days a week (riding 6-8 miles a day on his bicycle, plus swimming and light weightlifting at the gym in the evenings). He spends a lot of time outdoors. Tick bites are fairly common for him. He has had at least three bites this year. His initial “gut” suspicion was that he has “Late Lyme Disease” He has been a strict vegan for a few years. But over the past week has been having beef, fish (salmon) and dairy (milk, yogurt and cottage cheese and various cheeses) to see if that would make him feel better. The doctors did tell him that he is low in iron and that he is anemic. As a result, he has been taking iron pills for the past five days.

------------------------------ Folks: I just found out that a young relative of mine has been ill sinceJune and the doctors are stumped. So on the off chance that anyone here hasany ideas of what could be wrong with him, here goes:He's very young, late 30's and been a vegan for the past few years. For thepast week he's eating some fish and meat due to anemia which was discoveredduring dozens of tests to try to figure out what his ailment isWeight 190#, 6'3".Fevers, night sweats, extreme fatigue, muscle pain (which when he first gotsick were only in the am, but now he is in pain all day). Also a "thorny"feeling in his scalp.After an initial weight loss, his weight is now stable and his appetite isOK. But he is feeling awful and was hospitalized just last week. He is nowhome.Every test under the sun has been run on him and everything including lymedisease, mononucleosis, chronic fatigue syndrome as well as cancer has beenruled out. (Although it is my understanding that the lyme disease tests arenot always accurate). He goes back to the infectious disease specialistnext week.The doctors are telling him that he might have "fever of unknown origin"(IOW they don't know what's wrong with him) which often just "goes away".He is going to an excellent medical facility, Duke University MedicalCenter, down in North Carolina.TIA for any comments. ------ End of Forwarded Message

[Guest guest]

As a fellow vegan, B-12 deficiency comes to mind.

It can take several years before our stores are

used up and symptoms start. If left untreated,

it can cause permanent neuropathies (like the

tingling). Anemia isn't always iron either:

http://en.wikipedia.org/wiki/Pernicious_anemia

Also, have they checked his thyroid levels?

The fatigue and joint pain could be hypothryoidism.

-

[Guest guest]

This is a possibility... but Anemia can also follow after having a

chronic infection.

>

> As a fellow vegan, B-12 deficiency comes to mind.

> It can take several years before our stores are

> used up and symptoms start. If left untreated,

> it can cause permanent neuropathies (like the

> tingling). Anemia isn't always iron either:

>

> http://en.wikipedia.org/wiki/Pernicious_anemia

>

> Also, have they checked his thyroid levels?

> The fatigue and joint pain could be hypothryoidism.

>

>

> -

>

[Guest guest]

I have to concur with this one. My thyroid did a number on me. It is

hypothyroid. I also had tingling and a number of other symptoms. But,

has anyone considered spider bite??

Bob

>

> As a fellow vegan, B-12 deficiency comes to mind.

> It can take several years before our stores are

> used up and symptoms start. If left untreated,

> it can cause permanent neuropathies (like the

> tingling). Anemia isn't always iron either:

>

> http://en.wikipedia.org/wiki/Pernicious_anemia

>

> Also, have they checked his thyroid levels?

> The fatigue and joint pain could be hypothryoidism.

>

>

> -

>

[Guest guest]

Good they are getting to a diagnosis, but I'd wish him neither disease

(nor would I wish them on anyone else!)On 10/16/07, Francesca Skelton <fskelton@...> wrote:

The relative of mine who I posted about a few weeks ago finally has gotten closer to a diagnosis. Here's the latest from him:

The great news is that I think we are on the cusp of a diagnosis! I hate to speak too soon, but a form of vasculitis (inflammation of the blood vessels) seems to be the likely candidate. In very simple terms, the working theory is that I had an infection at some point. Then, after the bugs were gone, my immune system went on to attack my vascular system. Hence, the early suggestions that I have Lupus or Wegners – both are forms of vasculitis.