A puzzling illness/ any ideas?

[Guest guest]

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 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.

------ End of Forwarded Message

[Guest guest]

One of the first things they checked was his B12 and his thyroid. Both Ok (as he had been careful with his veganism) .

I looked up the symptoms of spider bites and they don’t seem to jibe with his.

Thanks to all who so far have given me (and him) food for thought.

From: Flower <flowerpowerpetalpusher@...>

Reply-< >

Date: Sun, 23 Sep 2007 17:39:28 -0000

< >

Subject: [ ] Re: A puzzling illness/ any ideas?

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]

Right, and a B12 deficiency does not result in a fever, though a

chronic infection often does.

> >

> > 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 had intended those to be my only thoughts, but a commercial

caught my attention last night after reading your mail. It

was for one of those depression drugs, and it went through a

list of symptoms that included a couple on the list you gave.

Namely, fatigue and, believe it or not, pains. Who knew?

-

--- In , Francesca Skelton <fskelton@...>

wrote:

>

> One of the first things they checked was his B12 and his thyroid.

Both Ok

> (as he had been careful with his veganism) .

>

[Guest guest]

But fever????

From: <truepatriot@...>

Reply-< >

Date: Tue, 25 Sep 2007 01:24:33 -0000

< >

Subject: [ ] Re: A puzzling illness/ any ideas?

I had intended those to be my only thoughts, but a commercial

caught my attention last night after reading your mail. It

was for one of those depression drugs, and it went through a

list of symptoms that included a couple on the list you gave.

Namely, fatigue and, believe it or not, pains. Who knew?

-

--- In <mailto: %40> , Francesca Skelton <fskelton@...>

wrote:

>

> One of the first things they checked was his B12 and his thyroid.

Both Ok

> (as he had been careful with his veganism) .

>

[Guest guest]

Negative.

> >

> > One of the first things they checked was his B12 and his thyroid.

> Both Ok

> > (as he had been careful with his veganism) .

> >

>

[Guest guest]

At 07:24 PM 9/24/2007, you wrote:

I had intended those to be my

only thoughts, but a commercial

caught my attention last night after reading your mail. It

was for one of those depression drugs, and it went through a

list of symptoms that included a couple on the list you gave.

Namely, fatigue and, believe it or not, pains. Who

knew?

Hungry, angry, lonely, tired are the components of the HALT acronym of

symptoms associated with depression, although they all, of course, come

and go (especially the angry, some would say).

The hungry one's worrisome!

;-)

Maco

-

--- In

, Francesca Skelton

<fskelton@...>

wrote:

>

> One of the first things they checked was his B12 and his thyroid.

Both Ok

> (as he had been careful with his veganism) .

>

[Guest guest]

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.

[Guest guest]

I agree. It’s pretty serious. And scary – considering he’s been pretty serious about his health for the past 3 years (if you recall my first post). He went from an overweight meat eater to a slim health conscious vegan following a scare when the doctor told him if he didn’t lose weight and get serious, he’d wind up with heart disease.

So now this instead.

I’ll update the group as I hear more. Treatment starts immediately.

Apparently the drugs he needs to take can cause osteoporosis. I sent him

Rod’s recent post about tea and osteo.

From: Dowling <christopher.a.dowling@...>

Reply-< >

Date: Tue, 16 Oct 2007 16:06:56 -0400

< >

Subject: Re: [ ] A puzzling illness/ any ideas?

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.