Any experts on Bilharzia?

[rudi-h]

I got infected with Bilharzia in 2017.   Symptoms were fatigue and lack of energy, but none of the typical symptoms such as blood in the urine etc.  Long story short, it got diagnosed pretty quick and I took 2 sets of pills for treatment which solved the problem completely.

Little did I know, that the medication is only effective on the larger parasites (those that typically cause the symptoms) and the parasite eggs seemingly remained dormant but present in my body.

In Feb this year the parasites have awoken from their hibernation and presented as back pain (information which I would only find out earlier this week), over time turning into sudden bursts of fever and extreme headaches in the past weeks.

After many tests I was diagnosed with bilharzia again (relapse from the earlier infection).  I took the prescribed medication again and the headaches and fever symptoms are completely gone, however the back pain remains.  From a brief internet search it seems that the exact condition is perhaps something called either Spinal Chord Schistosomiasis, Neuroschistosomiasis or Schistosomal myeloradiculopathy.  I understand that this is caused by the mostly dormant parasite eggs and not the fully grown parasites responsible for the other symptoms.

Is there separate treatment for the spinal cord symptoms caused by the eggs?  It doesn't seem that the pills have done anything to relieve the back pain symptoms.

Any help would be appreciated

Edited May 20, 2021 by rudi-h

[TNT1]

It worked wonders for Froome...

[River Rat]

If having it 5 times makes me an expert here goes, the first time I got diagnosed they picked up that I had the parasite for something like 4 to 5 years, my only symptoms was tiredness. They were able to track the number of cycles of eggs the worm laid in my system. The treatment for bilharzia usually only stops the egg laying part of the cycle and traces of the parasite can remain in the system for years. I was treated with the drug that preceded Praziquantel however,  this egg laying  part of the cycle is rarely eradicated completely on the first treatment and as canoeists we treat ourselves at least one a year we don't even bother with tests as they inevitably come up positive.  So my advice is to take the Praziquantel on a regular basis obviously with the doctors recommendation. I hardly ever get symptoms anymore but every blood test usually produces evidence of the parasite mostly old infections. 

[Steady Spin]

Can you completely eradicate this? 

[eala]

Aaaaa! Now 'River Rat' makes sense

[Stretch]

39 minutes ago, eala said:

Aaaaa! Now 'River Rat' makes sense

Ha ha...I saw the title of the thread and came here to point River Rat because I knew he was a canoeist.. And all my mates who do the dusi regularly have had it

[Mike Mac]

What tests are done to look for the paracite? 

I paddled the rivers in KZN for many years. I have also suffered from fatiqued for many years (undiagnosed). Perhaps this is something that I should have tested.

M

[rudi-h]

3 hours ago, River Rat said:

If having it 5 times makes me an expert here goes, the first time I got diagnosed they picked up that I had the parasite for something like 4 to 5 years, my only symptoms was tiredness. They were able to track the number of cycles of eggs the worm laid in my system. The treatment for bilharzia usually only stops the egg laying part of the cycle and traces of the parasite can remain in the system for years. I was treated with the drug that preceded Praziquantel however,  this egg laying  part of the cycle is rarely eradicated completely on the first treatment and as canoeists we treat ourselves at least one a year we don't even bother with tests as they inevitably come up positive.  So my advice is to take the Praziquantel on a regular basis obviously with the doctors recommendation. I hardly ever get symptoms anymore but every blood test usually produces evidence of the parasite mostly old infections. 

Thanks, good to know I'm not all alone in this.

I would like to ask though, have you (or anyone in the rowing fraternity that you know) ever had the lower back pain symptoms?  I'll take your advice on the periodic treatment with praziquantel / biltricide to kill parasites that have not been killed in the first round of treatment, but is there anything else to resolve the damage to the nervous system?

According to the abstract of the article below (I don't have access to the entire paper, nor am I likely to understand it), they suggest use of steroids and even surgery?  Would be keen to know if there are any doctors in SA that might have this type of experience.

https://www.sciencedirect.com/science/article/pii/B9780444534903000224#:~:text=Schistosomal infection of the central,or result in severe complications.

[River Rat]

As far as I know if you catch it early most of the damage is temporary,  the only permanent damage is usually to the urinary tract or bladder lining in severe cases.  Generally people recover once the egg laying is stopped very few have had any permanent damage. How long ago did yoh have the praziquantel? 

[olmec]

I am not _your_ doctor; and also don't self diagnose. Go talk to a tropical disease specialist (many in RSA) and get their help.

[rudi-h]

30 minutes ago, River Rat said:

As far as I know if you catch it early most of the damage is temporary,  the only permanent damage is usually to the urinary tract or bladder lining in severe cases.  Generally people recover once the egg laying is stopped very few have had any permanent damage. How long ago did yoh have the praziquantel? 

I had the medication earlier this week, but the back pain (undiagnosed until last week as this is not a common symptom) had started early in the year (Jan or Feb), so I've been showing symptoms for 4 months prior to treatment.  Thanks, I'm hoping that the back pain will also subside.

[gurns]

An interesting treatment that I have taken recently for Biharzia is Biltricide followed two weeks later by a course of Coartem.

Bilharzia is very interesting as it can show up in many parts of the body. It has caused me to have, at various times, a cough, eyes being sensitive to light, fatigue, headaches. night sweats,  etc. I have suffered with this for over 30 years and it seems as though the Coartem is a good follow up to the Biltricide.

[rudi-h]

33 minutes ago, olmec said:

I am not _your_ doctor; and also don't self diagnose. Go talk to a tropical disease specialist (many in RSA) and get their help.

Do you have a reference?

It doesn't seem to be as simple as one would think.  To date I've spent 4 full days in hospital and probably undergone upwards of R60k's worth of tests (blood tests, CT's, MRI's, Sonar's, X-rays etc.) just to get the diagnosis in the first place.  Over and above this, I seem to have a very rare symptom of a rather complex disease, so it would require a doctor who is especially clued-up with Bilharzia, hence the question in the first place.

 

[rudi-h]

5 hours ago, gurns said:

An interesting treatment that I have taken recently for Biharzia is Biltricide followed two weeks later by a course of Coartem.

Bilharzia is very interesting as it can show up in many parts of the body. It has caused me to have, at various times, a cough, eyes being sensitive to light, fatigue, headaches. night sweats,  etc. I have suffered with this for over 30 years and it seems as though the Coartem is a good follow up to the Biltricide.

Thanks, I'll enquire about Coartem.  PS, who is the doctor that treated you?

Edited May 20, 2021 by rudi-h

[DJR]

Now, take this with a pinch of salt please, since the pandemic times that we live in, but I recall a footnote somewhere that Ivermectin is also sometimes used in combination with the other drugs more commonly used for Bilharzia.................not sure anyone ever did a double blind peer reviewed and Hub approved study on it though................maybe this is your chance?!

Ps. I note that Comic Sans has disappeared with the update????

[eala]

1 hour ago, DJR said:

Now, take this with a pinch of salt please, since the pandemic times that we live in, but I recall a footnote somewhere that Ivermectin is also sometimes used in combination with the other drugs more commonly used for Bilharzia.................not sure anyone ever did a double blind peer reviewed and Hub approved study on it though................maybe this is your chance?!

Ps. I note that Comic Sans has disappeared with the update????

 

1 hour ago, DJR said:

Now, take this with a pinch of salt please, since the pandemic times that we live in, but I recall a footnote somewhere that Ivermectin is also sometimes used in combination with the other drugs more commonly used for Bilharzia.................not sure anyone ever did a double blind peer reviewed and Hub approved study on it though................maybe this is your chance?!

Ps. I note that Comic Sans has disappeared with the update????

My thoughts also .