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Another Round of Illness, Going on 5 years, this time with ICU
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Some of you may recall I posted last year asking for help re a persistent illness I have had since visiting Botswana in 2008.

I came home and was in bed for 2 weeks, ill. Since then, every 3-6 months I would get the once in a decade laid out for 2 weeks high fever illness.

No doctors here were any help, and the final blow was the Duke Infectious Disease docs refusing to see me.

Here is a link to the Previous Thread

11 days ago I started feeling ill, and knew the drill. I pushed through the first 2 days, but then spent the next 3 1/2 in bed. I rallied to attend a Super Bowl Party. Started feeling worse driving home.

By 11 pm I had the shivers like you would not believe. Pulled muscles in my chest, back, chest and jaw. My Muscles just cramped up from shivering.

Bit the bullet and called the paramedics and went to Scripps La Jolla ER.

My Blood pressure was 58/32 and heart beating 120 a minute. I was pretty delirious and then went blank for about 12 hours.

3 days in the ICU- but finally got the attending to get an infectious disease doc to visit. He was amazed and fascinated by my story, and thought it was pretty incredible that Duke would not see me. He said infectious disease docs live for this type of case.

They gave me neosenefrin (sp?) to increase my BP, took three days to get it up.

Apparently viruses and bacteria release toxins that expand blood vessels, and when there is too much there, the BP goes down, down then--bad things happen.

Loads of tests, CT w/ contrast of abdomen for abscess, EKG of heart (normal) to see if virus in heart, and blood cultures that are still growing.

I did have "RSV" which is apparently a children's respiratory disease, not typical in adults, but backs my theory that there is something that is weakening my immune system.

Oh, and pneumonia.

At least there is a doc following the case, and he gave me 10 days doxycycline, and evofloxacin and antivirals.

I am not convinced I will only solve this issue by gathering up my records and going to a good doctor in Africa, which I will do as soon as able.

I hope this is informative to all- if I could do it again, I think I would take the strongest antibiotics possible while on every trip, and really be careful getting enough rest etc to eliminate illness.


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Posts: 1489 | Location: North Carolina | Registered: 19 July 2005Reply With Quote
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404WJJeffery:

Perhaps there is a South African doctor on this forum to whom you could send your medical records. Failing that, one or two of AR's South African hunters and outfitters might recommend someone and a hospital down there.

Doing the research from your home should be useful if you do decide to go there.

I wish you luck with your recovery.

Bill Quimby
 
Posts: 2633 | Location: tucson and greer arizona | Registered: 02 February 2006Reply With Quote
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That just doesn't sound very fun at all. At the point I would have been admitted, though, my wife would have shown up with my living will and medical power of attorney just waiting for me to go under. Wishes for a speedy recovery and let us know what you find out. Tick Fever possibly?
 
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I said a prayer for you.


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Posts: 2786 | Location: Northeast Louisianna | Registered: 06 October 2009Reply With Quote
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Joel, sorry to hear. It sounds viral to me, the way it goes dormant and then emerges again. I'm sure the doctors in Africa would be better able to draw on their experience to figure it out.
 
Posts: 20170 | Location: Very NW NJ up in the Mountains | Registered: 14 June 2009Reply With Quote
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This must be very frustrating for you. I hope someone can truly help.


~Ann





 
Posts: 19583 | Location: The LOST Nation | Registered: 27 March 2001Reply With Quote
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I know Duke turned you down, but have you tried UNC? My dad is a patient at the cancer center and I have been very impressed with the level of care he has received.
 
Posts: 550 | Location: Augusta,GA | Registered: 01 September 2001Reply With Quote
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Sorry to hear of your ongoing troubles. It doesn't look like anyone has nailed the cause.
Just a thought based on someone i met in Zim a couple of years ago - Rickettsia - a family of diseases often associated with scrub typhus and commonly transmitted through tick bites. My friend suspected she received a tick bite from a taxidermist premises next to where she was living. Some of her on going problems sound a lot like those you are experiencing. I did a bit of research on the matter and discovered a dire lack of in depth knowledge, misdiagnosis and vague treatments regimes.At the time the acknowledged expert was from memory a French lady doctor working out of South Africa - at least she appeared to be publishing the greater volume of papers on the subject. I'm no medico but this could be worth mentioning to your specialist. Hope you get a positive outcome finally. Regards.
 
Posts: 465 | Location: New Zealand, Australia, Zambia | Registered: 25 May 2009Reply With Quote
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404Jeff,

Consider contacting the Hospital for Tropical Diseases in the UK. http://thehtd.org/

The UK has some excellent health care for tropical diseases and may be interested in your case. I had a son who contracted biharzia in Zambia and had a devil of a time getting him diagnosed. Finally took an article from the Safari Club Magazine on the same subject to the Dr. and he scrounged the medicine and gave it to my son and within a week he was back to normal. Just not big on the US Dr.s list of common diseases. I understand there is a good hospital in Switzerland also, but do not know the name.


Jim
 
Posts: 1210 | Location: Memphis, TN | Registered: 25 January 2008Reply With Quote
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Damn Joel, sorry to hear all of this. I don't have any suggestions that haven't already been given, but I would get my ass to South Africa as soon as possible and see a specialist.

Good luck my friend.


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Posts: 1929 | Location: Lafayette, LA | Registered: 05 October 2007Reply With Quote
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Joel, I think Butch is spot on. If it were me, I would get to Jo'burg and start dealing with an African specialist in infectious diseases. Good luck, will keep you in my thoughts.


Mike
 
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I, too, am surprised Duke turned you down. A friend of mine's dad developed a skin condition after they got back from a few years in Liberia where the skin would slough off and itch just terribly, after about 15 years of this he wound up at Duke who provided the ONLY solution that relieved his suffering.

Duke seems to have a line on some weird stuff, why they would not see you is really asinine.

Best of luck getting better and finding out just what the hell is up.
 
Posts: 7824 | Registered: 31 January 2005Reply With Quote
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Joel,

Did you contract this condition in a wet area of Bots, like the delta or one of the drier areas in the Kalahari??


Go Duke!!
 
Posts: 1299 | Location: Texas | Registered: 25 January 2009Reply With Quote
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Originally posted by Dall85:
404Jeff,

Consider contacting the Hospital for Tropical Diseases in the UK. http://thehtd.org/

The UK has some excellent health care for tropical diseases and may be interested in your case. I had a son who contracted biharzia in Zambia and had a devil of a time getting him diagnosed. Finally took an article from the Safari Club Magazine on the same subject to the Dr. and he scrounged the medicine and gave it to my son and within a week he was back to normal. Just not big on the US Dr.s list of common diseases. I understand there is a good hospital in Switzerland also, but do not know the name.

DITTO THIS. As a physician, i can tell you that this UK hospital is considered to be probably the world's foremost authority on tropical disease diagnosis and treatment- it's a holdover from the days of the British Empire and they had colonies in all the far flung tropical countries in the world.


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Posts: 13552 | Location: Georgia | Registered: 28 October 2006Reply With Quote
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I wonder if you have contracted Bilharzia a very serious disease contracted from water borne flukes that get into your blood system? Good friend/PH hunting in Cameroon last season contracted it and even the specialists in South Africa had trouble diagnosing it...they finally did and it was succesfully treated.
You might try for a referral from CDC:
Centers for Disease Control and Prevention
1600 Clifton Rd
Atlanta, GA 30333
800-CDC-INFO
(800-232-4636)
TTY: (888) 232-6348
New Hours of Operation
8am-8pm ET/Monday-Friday
Closed Holidays
Also, Canada has a very good Tropical Disease center, I believe in Toronto??
Best wishes on your diagnosis and recovery.


470EDDY
 
Posts: 2677 | Location: The Other Washington | Registered: 24 March 2003Reply With Quote
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quote:
Originally posted by jdollar:
quote:
Originally posted by Dall85:
404Jeff,

Consider contacting the Hospital for Tropical Diseases in the UK. http://thehtd.org/

The UK has some excellent health care for tropical diseases and may be interested in your case. I had a son who contracted biharzia in Zambia and had a devil of a time getting him diagnosed. Finally took an article from the Safari Club Magazine on the same subject to the Dr. and he scrounged the medicine and gave it to my son and within a week he was back to normal. Just not big on the US Dr.s list of common diseases. I understand there is a good hospital in Switzerland also, but do not know the name.

DITTO THIS. As a physician, i can tell you that this UK hospital is considered to be probably the world's foremost authority on tropical disease diagnosis and treatment- it's a holdover from the days of the British Empire and they had colonies in all the far flung tropical countries in the world.


Yeah I went to them when living in London in 1989 before spending several months in Africa. Had a series of shots for various infectious diseases. The hopeless nurse gave all the multiple injections all in one place in one arm.

Headed home to Kensington in West London, and managed to catch a bus part way, was seriously becoming sick on the bus, delirious and out of it. Managed to walk the rest of the way across Hyde Park and Kingston Gardens home. Vomited and was otherwise sick - diarrhoea, as well multiple times. Zombie for a day or two.

A nurse which stayed with us later said the Tropical Diseases hospital stuffed it up, not the least way too many injections at once and all in the same muscle.

Never had that result again or since. On subsequent trips used the local doctor, and no ill reactions.


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Posts: 10138 | Location: Wine Country, Barossa Valley, Australia | Registered: 06 March 2002Reply With Quote
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quote:
Originally posted by 404WJJeffery:
Some of you may recall I posted last year asking for help re a persistent illness I have had since visiting Botswana in 2008.

I came home and was in bed for 2 weeks, ill. Since then, every 3-6 months I would get the once in a decade laid out for 2 weeks high fever illness.

No doctors here were any help, and the final blow was the Duke Infectious Disease docs refusing to see me.

Here is a link to the Previous Thread

11 days ago I started feeling ill, and knew the drill. I pushed through the first 2 days, but then spent the next 3 1/2 in bed. I rallied to attend a Super Bowl Party. Started feeling worse driving home.

By 11 pm I had the shivers like you would not believe. Pulled muscles in my chest, back, chest and jaw. My Muscles just cramped up from shivering.

Bit the bullet and called the paramedics and went to Scripps La Jolla ER.

My Blood pressure was 58/32 and heart beating 120 a minute. I was pretty delirious and then went comatose for about 12 hours.

3 days in the ICU- but finally got the attending to get an infectious disease doc to visit. He was amazed and fascinated by my story, and thought it was pretty incredible that Duke would not see me. He said infectious disease docs live for this type of case.

They gave me neosenefrin (sp?) to increase my BP, took three days to get it up.

Apparently viruses and bacteria release toxins that expand blood vessels, and when there is too much there, the BP goes down, down then--bad things happen.

Loads of tests, CT w/ contrast of abdomen for abscess, EKG of heart (normal) to see if virus in heart, and blood cultures that are still growing.

I did have "RSV" which is apparently a children's respiratory disease, not typical in adults, but backs my theory that there is something that is weakening my immune system.

Oh, and pneumonia.

At least there is a doc following the case, and he gave me 10 days doxycycline, and evofloxacin and antivirals.

I am not convinced I will only solve this issue by gathering up my records and going to a good doctor in Africa, which I will do as soon as able.

I hope this is informative to all- if I could do it again, I think I would take the strongest antibiotics possible while on every trip, and really be careful getting enough rest etc to eliminate illness.


Sorry to hear all that. But not being a medico, no idea.

I came back from Zimbabwe in 1994 with an illness. The docs looked for all sorts of exotic diseases. Turned out to be glandular fever. Had that for several years off and on, until I had a car accident and a serious bump on the head. Fixed it believe it or not.

Caught some obscure rash on my arm in Egypt, kept coming back for years, finally gone.

Good luck, hope you find some answers.


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Posts: 10138 | Location: Wine Country, Barossa Valley, Australia | Registered: 06 March 2002Reply With Quote
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I would contact the WHO or other aid organization and find a list of doctors with African conflict zone experience.

Good luck.
 
Posts: 305 | Location: South Africa | Registered: 13 April 2011Reply With Quote
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I still get hot about that Duke MD refusing to see you. I'm glad you have at least one specialist interested. If the local guy doesn't fix you up, that Hospital for Tropical Diseases in the UK sounds like a very good option. I hope it works for you!!!

Regarding the 10 days of doxy, I know that some tick borne diseases, lyme among them and probably rickettsia as well, take 2 and 3x as long a regime of antibiotic to really kill off. You might ask him about that.

Good luck with finally whipping this!


Chuck
 
Posts: 359 | Location: NW Montana | Registered: 18 February 2007Reply With Quote
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Is ALF on here not a South African docter? Botswana is mostly an arrid and dry country, cannot think that you could have picked up anything there.....but you never know.


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Posts: 2018 | Location: South Africa,Tanzania & Uganda | Registered: 15 August 2006Reply With Quote
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So sorry to hear about what you are going thru,wish you the very best and pray a solution comes your way.


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Posts: 2283 | Location: MI | Registered: 20 March 2007Reply With Quote
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I doubt this can be tick bite fever - as far as I know you can only get this once.

It sounds more like a recurring Malaria. See if you can ascertain whether Dr Saio is still at the Nairobi Hospital in Kenya - I saw him there in about 1993; he is an expert in this field.

Good luck - my thoughts are with you.
 
Posts: 17 | Location: Zimbabwe | Registered: 08 October 2002Reply With Quote
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Sorry for your all you are going through...

2 other ideas...have you ruled out the (unlikely yet possible) coincidence that you have Lyme disease or one of its variants?

And have you had contact with anyone from the CDC- Center for Disease Control- in Atlanta?

All the best to you.
 
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just about 50 miles from me is this clinic known as the mayo clinic. in that place there are dr's from all over the world. you really don't even need a referral although it does help speed things up a bit. it's only about a 3 hr flight from your place to rochester mn. think about it. there are firm reasons for their reputation
 
Posts: 13465 | Location: faribault mn | Registered: 16 November 2004Reply With Quote
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This is not malaria or tick fever as you would degenerate. Have you been checked for Bilharzia? Sleeping sickness?


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Posts: 9994 | Location: Zambia | Registered: 10 April 2009Reply With Quote
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Joel, I am praying for you.

Aaron
 
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Thinkin' of you brother. tu2






 
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Joel, sorry to hear this, and just wanted to let you know that my offer still stands. There are some good tropical medicine docs in Boston. If there's anything I can do by way of a referral, please don't hesitate to contact me.


Mike

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Posts: 13704 | Location: New England | Registered: 06 June 2003Reply With Quote
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Originally posted by 404WJJeffery:
I am not convinced I will only solve this issue by gathering up my records and going to a good doctor in Africa, which I will do as soon as able.



404,

These people have been in the business since 1899. I am sure that there are some good hospitals in Africa, but...

London School of Hygiene & Tropical Medicine


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Posts: 1114 | Location: Georgia | Registered: 09 March 2001Reply With Quote
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Joel,
My best wishes for a quick recovery and I agree with others who pointed you to a Tropical Infectious Disease specialist in the RSA... good luck and God speed!


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Posts: 7561 | Location: Victoria, Texas | Registered: 30 March 2003Reply With Quote
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Gentlemen and Lady Ann

Thank you all for your kind words and good advice. The UK hospital looks like a good choice as well. I am gathering up my medical records for a road trip. For a few years we lived on the east and west coast, so there are about 5 places I visited ERs in La Jolla & Chapel Hill, 2-3 primary care docs, and a clinic when I was on a business trip, etc.

My local doctor seems like a sharp guy and immediately brought up bilharzia, asked about a rash, etc.

He did say the initial Doxy would be for 10 days but he may extend it, and admitted that hospitals abroad may have more expertise, but also genuinely seemed interested in the challenge. He is Howard Miller, MD in La Jolla, seems to have decent credentials.


Sorry for not responding sooner- been still under the weather. I also had argument before the 4th Circuit Court of Appeals (California) this week that I had been preparing for weeks. Lying in bed in the ICU I was wigging out worrying if I would make it.

The court staff got wind of my recent stay, mostly because I was sneezing, wheezing and apologetic and keeping my distance. They passed it on to the judges panel I believe because they were very kind, only interrupting me 3-4 times instead of the usual grilling one gets in argument.

To wrap up, the local doc thinks it is something blood borne, and we are still waiting on test results, the cultures have to grow a few weeks.

Will keep all posted for the greater good, but one way or another, here or abroad, I hope to have this sorted out in the next 60 days or so.


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Posts: 1489 | Location: North Carolina | Registered: 19 July 2005Reply With Quote
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Joel, The best to you and hope a diagnosis and remedy is close at hand.

Mike


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Posts: 6768 | Location: Wyoming, Pa. USA | Registered: 17 April 2003Reply With Quote
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Talked to my friend who grew up in Zim. his dad was a doc there. I remembered when he had gotten bilharzia in college. Im no expert and my memory is full of holes but after talking to him doubt it is this. You would have had serious weight loss early on and not been able to keep anything down among other things. There would have been other symptoms as well. It is more than likely a viral infection secondary to something else. I agree with the board get to someone who not only knows their stuff but gives a damn. I have found that all too often if you have something that can not be easily pegged down or are not connected in some way you cant be seen. Make that won't be seen. It pisses me off when the places that are supposed to be the experts refuse to see patients. I do not know their reasons for doing so but to me it is still wrong. That said I will make a couple more phone calls on your behalf.


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I sent the entire thread on this topic to friend/PH in South Africa that contracted Malaria and Typhoid last season in Cameroon, these were diagnosed and treated in Country, then after returning home he had lingering serious illness and they diagnosed Bilharzia.
Here is his response/feedback to me: (note, I have asked him if he knows what the big horse pills were?)



With regard to the attatchment to your email regarding that guys health issues . Whilst still in Cameeroon I had the same issuues with back and chest muscles which I was lead to believe were part of the symptoms of the malaria I had . It was difficult to tell the symptoms of the Malaria and Typhoid apart as they are very similar . It was blood tests in the capital Ayonde that was used to diagnose the two at the same time .
My symptoms on returning to Sa were pretty much the same as the ones in the mail , except I was relapsing about every six weeks .It got to the stage that I could barely walk and I felt so bad that on two occassioins if I had been able to physically gain access to my gun safe I would have shot myself to get it over with The Bilharzia was only diagnosed on the second test for it some ten months after the first test . I am still not out of the woods yet . The bilharzia was treated by a once off dose of five tablets ( really big ones that I had to break in half to swallow ) . There has been some improvement . I was a few weeks after the treatment I was checked for Addisons disease . This comes about apparently from the bodies immune system attacking the Rhenal glands on the kidneys to put in laymans terms . It is a very debilitating disease and sounds pretty much like this chap is suffering from . My tests came back negative . I am out of money so at this time cannot pursue this . I will just have to bite the proverbial bullet and see what happens .
Later Tony

Note, my wife a very expereinced nurse -44 years of practice, says that they generally treat diseases like Bilharzia with heavy duty antibiotics and the associated blood flukes with Flagel...your Doc can/should advise on this and a good Tropical medicine practice should be able to identify with blood tests...but note, Tony's didn't show up until second round?? My wife also notes the Addisons disease is gererally hereditary and attacks Adreanal Glands, not Renal as Tony stated...

Hope this is helpful.


470EDDY
 
Posts: 2677 | Location: The Other Washington | Registered: 24 March 2003Reply With Quote
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I remember your thread on this from before. I too am very surprised that Duke did not get you in and work this up. I am glad for your new doctor, and I bet something better happens with him or with some of the recommendations here. I know we have tropical disease specialists here in Houston and I used them 20 years ago. Having local area knowledge is so important in these cases. I wish you all the best.
 
Posts: 1440 | Location: Houston, Texas USA | Registered: 16 January 2005Reply With Quote
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Joel,
A prayer will be said for you, one hoping for an immediate diagnosis and cure. Times like this I wish I were a medical instead of mental doctor.
Max


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Posts: 3490 | Location: Colorado Springs, CO | Registered: 04 April 2003Reply With Quote
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Joel,

Our best hopes for a good diagnosis and a complete recovery.


Mike

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Posts: 6199 | Location: Charleston, WV | Registered: 31 August 2002Reply With Quote
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Joel, I can't wait to read your post when you finally find the specialist who successfully untangles this web of medical mystery.
Sorry for all your suffering. Makes last night's emergency root canal and my two pending lumbar fusions look like mighty small taters.


There is hope, even when your brain tells you there isn’t.
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Posts: 16662 | Location: Las Cruces, NM | Registered: 03 June 2000Reply With Quote
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Joel; Just read the March/April issue of Sports Afield. Article on Pg 22 called Survival: Malaria: What you need to know by Anthony Acerrano. He refers to Global Rescue physicialns as having significant expereince with tropical diseases and diagnossing from afar while hunters are in the field with symptoms. He talks about a Dr. Phil Seidenberg with significant expereince...the Afrian Regional Medical director for Global Rescue.
I beleive it would be worth a call and even buying a membership to obtain some guidance from these folks.
Don Causey, the former owner of The Hunting Report is now involved with Global Rescue as well...a good advocate for all hunters. Good Luck!


470EDDY
 
Posts: 2677 | Location: The Other Washington | Registered: 24 March 2003Reply With Quote
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After some further checking I am again looking at bilharzia. There are several methods of diagnosis but from what I can tell all often require 3 or more times to test positive. There is an antibody assay that seems good as well as microfiltration of the urine looking for expelled eggs. I would think the latter would be a good fit for your case. The number of eggs is often so small that it takes repeated testing to show positive. They got something like an 85 % rate after 3 tests in young people not exhibiting symptoms. Will keep digging for info for you.


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