Undiagnosed ilness for 2 years

[Pawel1]

Greetings,

I'm writing because of my Wife's undiagnosed illness for almost two years. In March 2020 we were on vacation in Thailand. On the last day of our stay my wife started to feel unwell, but we decided to return to our country. Since then she has been ill.
 

Her main symptoms are:
- orthostatic tachycardia (heart rate above 130 without exertion)
- periodic bradycardia (heart rate can drop to 35 beats)
- an elevated temperature of 37.0 to 37.5
- general weakness
- severe pains in the joints
- pain in the lung area
- discomfort and pain in the intimate area
- night sweats
- enlarged spleen
- changes in the lower part of the lungs

These symptoms have been present since March 2020 until now. In the early stages of the disease, pneumonia was diagnosed and antibiotic treatment was instituted. The first antibiotic was Biotraxone, which had no effect. Treatment was then changed to Azytromycin. After its use, her symptoms began to subside and her mood improved. Unfortunately, according to the doctor's recommendations, the treatment lasted only 7 days and a few days after the end of antibiotic therapy all the symptoms returned. Subsequent attempts at antibiotic treatment were unsuccessful.

Unfortunately, to this day in Poland we have not been able to receive a diagnosis or succesful treatment. Hospitalization in several hospital wards and searching for a doctor who would try to diagnose my wife unfortunately did not bring any results. Autoimmune and cancerous diseases have been ruled out.

Is it possible to try to diagnose my wife's case in Thailand?

Could you recomend a doctor or hospital in Thailand?
I'm asking for help.

With regards,
Pawel

[Worldplus]

Have you looked at TB??  I have just finished the TB course of antibiotics..it lasts 13 months.. 12 or more tablets a day..

 

Her lungs etc could be a main cause... Worth checking..

 

Get x-rays and salava tests..

[ezzra]

This is no-brainer...  you should come back to Thailand asap and see that your wife get the right diagnosis and treatment be it in public or private hospital...

[bbko]

What's her age?  Did the docs there do a thyroid function test?

Also it's possible she could have two issues going on at the same time, has her heart been evaluated by a cardiologist?

 

[Nojohndoe]

question brucellosis

[steven100]

OP .....  Sheryl is the inhouse medical advisor on Aseannow, her analysis is second to none when it comes to answering questions .... I'm sure she will comment on your situation shortly.

[Whale]

Is she Thai? Is that the reason you want to try here? Or are you asking if Doctors/health system in Thailand is better than Europe?

 

Confused.

[LosLobo]

A lot of those symptoms, especially with a commencement date of March 2020 brings long COVID to mind.

 

I understand an antibody serum test cannot discriminate between past infection and vaccination.

 

I see Poland's health care system is regarded as one of the lowest in European Community Healthcare ranking. You may have a better outcome in a different Euro country. I understand Poland will reimburse you for additional medical costs. 

 

 

Edited February 10, 2022 by LosLobo

[KannikaP]

A public forum is not the best place to get a sick wife diagnosed. A hospital somewhere IS!

[Swimfan]

21 minutes ago, KannikaP said:

A public forum is not the best place to get a sick wife diagnosed. A hospital somewhere IS!

As you can see from the post he has done that multiple times unsuccessfully. Crowd sourcing opinions or information is not always a bad idea and may provide direction for further medical options. 

[blackcab]

@Sheryl  is away from the forum for a few days. I have tagged this post so that she can reply on her return.

[Pawel1]

Thank you all for the time to read my story and comment.

 

I'm deeply sorry that I didn't gave much information in the begining but from experience no one woud read the whole stroy. Even when we go to a doctor one and a half hour of consultation gives the oportunity to only scratch the surface.

 

I will try to answear all of your qestions and add more information.

Her age is 34 and she was healthy and active person before that vacation. She went regularly to the gym and enjoyed running. We hiked mountains and rode bicycles.

We are from Poland and have polish background (not Thai) but we were on vacation in Thailand and my wife felt bad during that stay and got ill the day we were flying home.

 

Thyroid was tested. She has hypothyroidism but it is since she were little and she is taking medicine regularly for that and is regularly tested. Depspite that thyroid was tested also when she got ill and it was ruled out.

 

We did extensive research, diagnostics and treatement. She has been in 7 different hospital wards in Poland, dosens clinics and dosens private doctors (we have a lot of medical records). So far no one coud provide clear diagnosis. Most doctors only had suspections and sugested treatement on that sugestions but with no effect. We have consulted her condition online with doctors from Germany, Singapoure and Thailand and done tests sugested but also no effect.

 

You sugested tuberculosis and brucelosis - we had that tested more than once so it was ruled out. But thank you for your sugestions it is still aprecieted maybe you will sugest something we didn't test yet.

 

Hart was tested extensively, holter, ecg, endurance test, cardiac electrophysiology study (electrodes inserted into the heart via a vein), MRI, ultrasond etc. Several cardiologists said that her hart is healthy (even in shape like amateur athlete). The sympthomps that hart represents, wchich were proven by holter, tachycardia, bradycardia and occasional hart stops, have been caused by some pahogen that affects nervous system.

 

Bone marrow was tested.

 

Lungs were tested extensively. Bronchoscopy was made and tested, several RTG and CT scans have been made. And several doctors said the same thing: there was inflammation on lower parts of lungs and there are sings of that but it is ok now. They subscribe it as descent changes but they are present to this day and unfortunately got bigger because on recent RTG specialist gave description that descent changes are present also in the middle of the lungs.

 

Doctors gave her dozens of antibiotics and antiparasitic drugs (ivermectin, albendazole, tinidazole, metronidazole) but none of them gave any result. There was one exeption, azythromicin 3 weeks after we came back from Thailand my wife felt beter after 2 days of taking azythromicin. Doctors send her home and told us to take it for 6 more days (8 days in total of azythromicin). The symptoms went away, she felt better but 3 days after she stopped taking it, all the symptoms were back. All the symptoms are present to this day. Doctors tried giving her azythomicin 2 more times but with no effect.

 

She was extensively tested for covid. It was march 2020 so there was no vaccine yet. She tested negative with all the tests PCR ant antibodies. There were a lot of covid tests.

 

She was tested for cancer, lukemia, autoimmune diseases, reumatology diseases, parasites, viruses, bacteria, fungi, she was even tested by neurologist and psychiatrist.

 

We are talking to Amsterdam Netherlands hospital for the posibility to diagnose her, but the conversation is slow with them. And we would want to try to diagnose her in Thailand since she got ill there.

 

In attachement I'm sending summary of most tests we have done in one spreadsheet.

 

I would deeply appreciate any feedback. Any sugestion is welcome.

Maybe you know a good infectious doctor Thailand or Europe who has some experience with such dificult ilness to diagnose.

summary.ods

Edited February 10, 2022 by Pawel1

[StayinThailand2much]

16 hours ago, Whale said:

Is she Thai? Is that the reason you want to try here? Or are you asking if Doctors/health system in Thailand is better than Europe?

 

Confused.

Without being familiar with the Polish healthcare system, wouldn't it make more sense to continue treatment in Poland? While there are good private hospitals in Thailand, they are not more advanced than European ones, but expensive, and even if the OP's wife is Thai, most probably not covered by the Thailand healthcare scheme.

 

'Long Covid' can probably be ruled out here, as the number of Covid-19 cases in Thailand was very low (around 100 new cases a day) in March 2000. 

Edited February 10, 2022 by StayinThailand2much

[Pawel1]

55 minutes ago, StayinThailand2much said:

Without being familiar with the Polish healthcare system, wouldn't it make more sense to continue treatment in Poland? While there are good private hospitals in Thailand, they are not more advanced than European ones, but expensive, and even if the OP's wife is Thai, most probably not covered by the Thailand healthcare scheme.

 

'Long Covid' can probably be ruled out here, as the number of Covid-19 cases in Thailand was very low (around 100 new cases a day) in March 2000. 

We tried to diagnose her and treat her in Poland for almost 2 years. We were in the best tropical medicine hospital in Poland and also the second best tropical medicine hospital. Some doctors ask if we were in those hospitals and say if you were there and they din't help you I won't be able to help either. Some said let it go, it will pass after few months (it was 1,5 year ago). Some tried their best but here we are. We feel like we run out of options in Poland. Some doctors say that maybe in Thailand have different tests for different bacteria (we don't know that but if we don't try what else can we do). We didn't have any medical backround but those 2 years we heve read so much (especially my wife) that some doctors were suprised with what we know, and some didn't even know what we are talking about. There is no test for melioidosis in Poland. When we ask doctors abot melioidosis they are surprised, didn't even heard it before (it was sugested to test by doctor from Singapore).

Edited February 10, 2022 by Pawel1

[StayinThailand2much]

1 hour ago, Pawel1 said:

There is no test for melioidosis in Poland. When we ask doctors abot melioidosis they are surprised, didn't even heard it before (...)

Symptoms and frequency of Melioidosis (according to Wikipedia)
	None, fever, pneumonia, multiple abscesses   The infection is constantly present in Southeast Asia, particularly in northeast Thailand and northern Australia

 

So, yes, if you were in Thailand's Northeast then, and suspect that your wife was in contact with polluted water or soil, go for it.

Edited February 10, 2022 by StayinThailand2much

[Pawel1]

25 minutes ago, StayinThailand2much said:

So, yes, if you were in Thailand's Northeast then, and suspect that your wife was in contact with polluted water or soil, go for it.

We were talking to a specialist on melioidosis from Europe.  Here is a qute from him:

"To be honest, melioidosis wouldn't be the first thing that crosses my mind. Severe melioidosis is almost only seen in patients with an underlying illness such as diabetes, kidney/liver problems etc. At the moment we also do not have a serology test running but these are not very specific. In addition, the causative bacterium is not very difficult to culture, most labs will detect Gram negative rods. "

 

We had multiple bacterial tests in different laboratories, and none of them showed gram-negative bacteria. When we will have a chance to test specificly for it we definetly will (for now even a specalist in the field doesn't know where it would be posible to test it). But specalist in the field (he studied that ilness) said it's not likely it is it, so we don't treat it like a prioryty right now (and people die from it in much shorter time, also it causes some other symptoms that my wife doesn't have).

 

BTW we were on Phuket, Phi Phi and Krabi. We swam in the sea and pools and ponds and lakes. We ate from the street, We had contact with elephants (swam with them), mokeys, cats. We saw one day that in the pool that we swam, giant Varanus likes to swim as well. We walked barefoot on the beach. We were invited by masaian people and ate with them their food (awesome folks). When our doctors herd that they grabed their heads (a saying in Poland for things that you think are not acceptable).

 

Worst of all the above we had sex in the bathtub on Phi Phi island. As we learned later the water there is not good for drinking and even brushing your teeth. My wife had bladder inflammation couple of days after (she sometimes had it before) and took medicine that always helps for this, furadazine that relieved the symptoms then. We din't think much of that at that time (because it did happen several times before) but now we think it coud have been the cause for all of her problems.

 

We were there with our friends and their 3 year old kid. Everyone ate the same things, did the same thngs etc. No one got ill but my wife.

[ktm jeff]

Have you tested for Lyme disease or Weils disease. You could also try testing for Strongyloidiasis. Ivermectin treats that. Good luck.

[Pawel1]

18 minutes ago, ktm jeff said:

Have you tested for Lyme disease or Weils disease. You could also try testing for Strongyloidiasis. Ivermectin treats that. Good luck.

Lyme disease - tested multiple times (different tests) - negative

Weils disease - negative

Strongyloidiasis - negative

 

Ivermectin isn't available for humans in Poland (i don't know why) so we managed to contact a specialist on parasites in Poland who works with pharmacy in Germany and they shipped us ivermectin. She took it as prescribed by a doctor and there were no results positive or negative. So specialists on parasites said that if it was a parasite it would definetly be some reaction, it woud get better or the worms would get angry and it would get instantly worse. So this way parasites were ruled out.

 

Thank you for the sugestion. It is much aprecieted.

[ktm jeff]

OK. Sorry . You have tested for many things. Lets hope someone else comes up with a suggestion.

[ktm jeff]

Maybe this wasnt caught in Thailand ?. What about heavy metal exposure , such as lead paint.

[Pawel1]

6 hours ago, ktm jeff said:

OK. Sorry . You have tested for many things. Lets hope someone else comes up with a suggestion.

Yes, in 2 yeras we have done a lot of tests, but every sugestion is aprecieted. Most doctors don't have any new ideas after seeing medical history. She also have been tested for heavy metals.

 

There is a suspection that it's some kind of bacteria. I don't know but maybe in Thailand they have different kind of tests for bacteria than in Poland? Maybe some bacteria doesn't grow on test provided in Poland?

 

I have written yesterday again to a profesor that we spoke with several times and been on consultation with him, and he replied that he doesn't have any more ideas.

[Pawel1]

6 hours ago, ktm jeff said:

OK. Sorry . You have tested for many things. Lets hope someone else comes up with a suggestion.

Yes, in 2 yeras we have done a lot of tests, but every sugestion is aprecieted. Most doctors don't have any new ideas after seeing medical history. She also have been tested for heavy metals.

 

There is a suspection that it's some kind of bacteria. I don't know but maybe in Thailand they have different kind of tests for bacteria than in Poland? Maybe some bacteria doesn't grow on test provided in Poland?

 

I have written yesterday again to a profesor that we spoke with several times and been on consultation with him, and he replied that he doesn't have any more ideas.

[BritManToo]

Dengue fever would fit the symptoms, but that doesn't last 2 years.

And there's another similar disease around.

[BritManToo]

This is a study of symptoms in patients 2 years after Dengue.

It appears to fit your wife's symptoms.

 

https://www.sciencedirect.com/science/article/pii/S1201971210025166#:~:text=Conclusions,the 2 years following infection.

 

"Among 97 individuals included in the study, 67 were female and 30 were male. As shown in Table 2, the persistence of clinical manifestations 2 years after dengue infection was significantly more prevalent among women (65.7% in women compared to a 36.7% in men). By contrast, most males had nearly fully recovered from their illness (p = 0.008). There were no other statistically significant differences in the demographic characteristics of study participants with and without persistent symptoms."

Edited February 13, 2022 by BritManToo

[Sheryl]

I very, very much doubt you will gain anything by coming to Thailand for this.

 

Diagnostic skills here are in general lower than in the west and nothing you say leaps out as suggesting a problem common in Thailand. Thai doctors are partial to "shotgun approaches" and I think a trip here would lead to a lot of unnecessary treatments and repeat tests that would leave you no closer to a diagnosis than before.

 

The fact that she first got ill while in Thailand does nto mean she is better treated here.

 

The Amsterdam University Medical Center Institute for Infection & Immunity is probably your best bet. They can test for meliodosis (a long shot but worth doing). In fact they have a meloidosis study group. You will find the names of some of those doctors and an email contact for one of the researchers here https://pubmed.ncbi.nlm.nih.gov/31369898/

 

While it is true that the organism that causes meliodosis can be cultured, the many antibiotics given to your wife may have affected culture results.

 

Or it may be an altogether different problem. It could be infectious or automimmune (it is nto possible to exclude all automimmune diseases, only specific ones).  and I would nto rule out long COVID despite the negative antibodies.

 

 

[Pawel1]

14 hours ago, BritManToo said:

This is a study of symptoms in patients 2 years after Dengue.

It appears to fit your wife's symptoms.

 

https://www.sciencedirect.com/science/article/pii/S1201971210025166#:~:text=Conclusions,the 2 years following infection.

 

"Among 97 individuals included in the study, 67 were female and 30 were male. As shown in Table 2, the persistence of clinical manifestations 2 years after dengue infection was significantly more prevalent among women (65.7% in women compared to a 36.7% in men). By contrast, most males had nearly fully recovered from their illness (p = 0.008). There were no other statistically significant differences in the demographic characteristics of study participants with and without persistent symptoms."

Thank you for this sugestion. My wife was tested more than once for dengue. Every result was negative IgM and IgG.

 

12 hours ago, Sheryl said:

I very, very much doubt you will gain anything by coming to Thailand for this.

 

Diagnostic skills here are in general lower than in the west and nothing you say leaps out as suggesting a problem common in Thailand. Thai doctors are partial to "shotgun approaches" and I think a trip here would lead to a lot of unnecessary treatments and repeat tests that would leave you no closer to a diagnosis than before.

 

The fact that she first got ill while in Thailand does nto mean she is better treated here.

 

The Amsterdam University Medical Center Institute for Infection & Immunity is probably your best bet. They can test for meliodosis (a long shot but worth doing). In fact they have a meloidosis study group. You will find the names of some of those doctors and an email contact for one of the researchers here https://pubmed.ncbi.nlm.nih.gov/31369898/

 

While it is true that the organism that causes meliodosis can be cultured, the many antibiotics given to your wife may have affected culture results.

 

Or it may be an altogether different problem. It could be infectious or automimmune (it is nto possible to exclude all automimmune diseases, only specific ones).  and I would nto rule out long COVID despite the negative antibodies.

 

 

Thank you for reply. Actually I've already read that article you posted and already spoke to one of the researchers. I spoke with Prof. Joost Wiersinga. The quote I posted earlier was from him. I am trying right now to get my wife to UMC in Amsterdam but comunication with them is pain (it takes several days for them to respond to email).

 

My wife was specificly in hospital to check for autoimmune diseases. Doctors said that she doesn't have one but I didn't know it's not possible to exclude all autoimmune diseases. We will speak to doctors on that matter. Maybe it's worth doing more research on that.

 

We still think that it could be infectious (it would be too much of coincidence to get seriously sick in one day while on vacation). And there was this case of getting beter while she was taking azythromicin. All the symptoms got better and she felt relief like she was getting better, but it was just this one time when medicine helped her, and after few days when she stopped taking it all the symptoms got back.

 

I realy hoped for a diagnosis in Thailand, I've heard good things about healthcare there, so it's a bit discouraging to hear that from you.

[The Hammer2021]

On 2/11/2022 at 12:30 AM, Pawel1 said:

We tried to diagnose her and treat her in Poland for almost 2 years. We were in the best tropical medicine hospital in Poland and also the second best tropical medicine hospital. Some doctors ask if we were in those hospitals and say if you were there and they din't help you I won't be able to help either. Some said let it go, it will pass after few months (it was 1,5 year ago). Some tried their best but here we are. We feel like we run out of options in Poland. Some doctors say that maybe in Thailand have different tests for different bacteria (we don't know that but if we don't try what else can we do). We didn't have any medical backround but those 2 years we heve read so much (especially my wife) that some doctors were suprised with what we know, and some didn't even know what we are talking about. There is no test for melioidosis in Poland. When we ask doctors abot melioidosis they are surprised, didn't even heard it before (it was sugested to test by doctor from Singapore).

Your are in the EU? Try the London hospital of tropical medicine or the pasteur institute in Paris.

My first thought is that she's been over treated with a massive amount of toxins from allopathic medicine and should consider an alternative approach

[talahtnut]

If your wife has picked a bug up in Thailand, the best place to

sort it out is the 'London School of Hygiene & Tropical Medicine'.

She also may have been unlucky enough to suffer adverse effects

from the jabs.

[Pawel1]

3 hours ago, The Hammer2021 said:

Your are in the EU? Try the London hospital of tropical medicine or the pasteur institute in Paris.

My first thought is that she's been over treated with a massive amount of toxins from allopathic medicine and should consider an alternative approach

Yes we are in the EU, in Poland.

 

We tried in London School of Hygiene & Tropical Medicine but they told us it's not possible to be treated there privately. Only on NHS (they turned us down).

We didn't consideret yet Paris but we'll definetly look into that.

 

The symptoms were there before treatment, also in between treatements there were long peiods of time and symptoms didn't change.

What alternative approach are you sugesting? I'm open to anything that could help.

 

2 hours ago, talahtnut said:

If your wife has picked a bug up in Thailand, the best place to

sort it out is the 'London School of Hygiene & Tropical Medicine'.

She also may have been unlucky enough to suffer adverse effects

from the jabs.

Do you have covid-19 vaccines in mind? Disease started long before she got vaccinated. Nothing changed after she took the vaccine (ofcourse it was consulted with doctors).

 

Before Thailand we didn't take any vaccines because we were vaccinated 1,5 year earlier (for recomended vaccines for Asia).

 

 

Edited February 13, 2022 by Pawel1

[dj230]

I’m not a doctor but March 2020 was when covid-19 was big. 
 

lots of people who got covid-19 then were extremely sick, seems like newer variants are less severe plus vaccines are making the disease much more mild. 
 

lots of reports of long term health complications after covid 
 

Could be anything, best to go to a hospital and have everything checked.