QUESTION
I wonder if I have a long term relapsing form of malaria and would really appreciate your advice.
I have worked coming and going between the UK and Kenya, Ethiopia and Eritrea for about 17 years in aid/international development (rural and urban areas). I stopped travelling to the region about 2 years ago. One of the reasons to stop this work was my poor health.
Since about 15 years I started developing a number of chronic somewhat overlapping problems that have made work difficult and year after year just won’t go away, even now that my life is purely Europe-based. One of these may be unassociated with working specifically in such tropical areas but rather a result of general stress.
This first condition (or group of ailments) is always with me to some extent or another and is something like repetitive strain injury from too much computer use under stress, which especially affected my hands neck and back. Now it is more like generalised chronic pain (bone and muscle aches and weakness, numbness or inability to use at all in bad phases). This pain is kind of background noise with intense flare-ups by now, but I do sometimes wonder if it IS related to other symptoms which seem to present as two distinct cyclical conditions.
What i wonder if either of these two could be directly related to malaria or malaria pill use—or the result of another parasite (i.e. I developed a lump in my ankle which the doctor thought was related to sulphonamide allergy from anti-malarials, but later a lot of egg-white like substance burst from several spots on my feet when in a hot bath—parasite eggs? and ?the parent got digested by my body?).
The symptoms of the two recurring problems are: (1) often hungry and weak with nausea and fuzzy brain/poor focus/concentration, and very occasionally flashing lights in my eyes for a short period and inability to express myself clearly, feel better immediately on eating
(2) about every two to three months I have several weeks of quite bad flu-like/viral-type symptoms: general aches (distinct from the chronic pain), sore throat and slight nasal congestion that doesn’t turn into a cold, bad headache, pronounced fatigue, slight nausea, general feeling of ill health. This often seems accompanied by general but not so acute loose bowel movements.
I seem to have experienced the first group of symptoms for years, perhaps before travelling for work as I have always been the type to need a lot of food and I burn it quickly. But the symptoms are getting more pronounced and constant as I get older (I’m now 46).
The second group of symptoms I have in cyclical patches both in the UK and while travelling. However when travelling in East Africa the symptoms became much more pronounced e.g. the fatigue much greater, the cold symptoms turned into something more acute and I sometimes lost my voice even and had intense pain on the roof of my mouth as though someone had grated it with a cheese-grater, the diarrhoea became very bad and acute.
I used to think I had eaten bad food, was affected by the high altitude, developed a weakness to the prevalent upper respiratory infections so many rural people had, got over run-down from too much work travel and heat etc. etc. I felt I had to carry out my work trips on adrenilin each time.
But actually I realised I got a reduced version of the same things back home months after travelling.
I also wondered if I was badly affected by too many vaccines over the years, and also the fact that I had become allergic to anti-malarial pills. In recent years I took the antibiotic instead of straight anti-malarials as I had developed problems with each kind (e.g. Larium I got severely depressed and otherwise had symptoms of sulphonamide allergy.).
But in wracking my brain as to what is wrong with me year after year I of course think of malaria as well as other options. I wonder if I DID contract malaria but was never properly treated for it (rather the anti-malarials will have kept it in a weaker version?). And if so could ALL my symptoms (e.g. all 3 chronic conditions I can identify, or maybe the second two only) be those of malaria lodged in my system and recurring and recurring?
My apologies for the long-winded explanation, hope it makes sense. But as you can imagine I am getting very worn down by all this and no UK doctor seems to find a solution. I have seen different specialists over the years including tropical medicine people but again, no final diagnosis.
I really hope for your help or advice. If not a mosquito do you think the worm is something to try and find out more about. They never tested that because the (? adult parasite?) lump in my leg went away and as regards the egg white in the bath (about 8 months later) I didn’t know what it was and only afterwards thought it had to be eggs!
Everyone in my work team apart from me contracted malaria of some kind in the region over the years. And I appeared to be the only person not to, but my health problems go on and on.
I look forward to your thoughts or ideas from others in this forum.
With thanks and best wishes, PM
ANSWER
Thanks for writing in, PM. I passed your message on to two medical doctors that serve as advisors to malaria.com. I have summarised their responses below, though both agree your symptoms do not sound like they are due to recurring malaria, at least not by itself.
Persistent anaemia (a common cause of fatigue and general malaise) post-malaria treatment would have been identified and treated long ago by most physicians. Signs of malaria, acute or relapsing, are much more distinctive and lacking in this person’s description of his/her symptoms.
Something that has gone on this long without killing the patient, without producing some unusual finding on exam, or showing some hint of itself in standard labwork is likely constitutional or the result of repeat assault on the immune system. Drug allergies, especially to sulfonamide-based drugs, are more apparent or pronounced in persons with chronic viral illnesses—for example this is often seen with HIV—up to 30% of HIV patients develop rash or fever to sulfonamide prescriptions, a much greater proportion than the general population. The mechanism for this reaction is thought to be some type of immune priming by the virus causing the system to overreact when presented with new antigens. In the long term, this “chronic immune stimulation” eventually results in immune dysregulation, and the many symptoms described by this person (fatigue/aches/gastrointestinal disturbance/mental fog…) can result. So many factors can contribute—repeated bouts of malaria, medications used as treatment, intercurrent viral infections (for which there are no commercial diagnostic tests nor specific treatment), other parasitic disease—strongyloidiasis/filariasis/Toxocara, the immeasurable immune stresses of frequent travel. The most common discoverable and TREATABLE entity in this case might be gut parasites, but it might also be assumed that these have been caught by doctors by now.
Minimum evaluation (assuming that basic blood work and chemistries are normal) should include thyroid and hormone evaluation, glucose tolerance, gluten tolerance, HIV and EBV studies and at least a screen for Borrelia/treponemes/Bartonella etc. It is unlikely that a hormone-secreting tumor would go undiagnosed this long, rather, the “hunger” is perhaps due to CHO sensitivity/insulin sensitivity (hypoglycemia). A re-exam for gut parasites using antigen stool studies and endoscopy if indicated. The aches are non-specific, but could be related to waning hormone levels (androgens OR oestrogens), vitamin D deficiency, immune dysregulation as discussed, or even autoimmune disease.
As such, the spectrum of possibilities is wide, but hopefully the above might give you some ideas to discuss with your doctor at a future visit. Also, since you are UK-based, if you haven’t already I would suggest you try to get an appointment with the Hospital for Tropical Diseases on Warren Street in London. They have wonderful diagnosticians with expertise in rare tropical infections, and so might be able to pick up the more unusual parasites/bacteria mentioned above.
Good luck!
PM says
Dear Malaria.com
I am so grateful to the two doctors advising Malaria.com and to yourself for your extremely detailed and thoughtful response to my question.
I can say this is the most in-depth attempt to analyse my symptoms in all the years I have asked for help and is more useful and encouraging than I can say.
Although it seems I don’t have malaria (at least its good to discount that!), your insights from a tropical medicine perspective and a more whole-picture/whole-history point of view are immeasurably helpful.
Strangely enough the different avenues of investigation your experts suggest – hormones, auto-immune disease, hypoglycemia, vitamin deficiency, gluton tolerance, parasites etc. are EXACTLY those areas I have wondered about myself after weeks and weeks now of concentrated thinking about my medical history and travel patterns, trying to analyse possible causes and links, and a lot of internet research. e.g. re. hormone issues, I have a history of producing too much oestrogen (I am female) and it is encouraging you suggest this, although I failed to mention this in my original email.
However it is very different to go armed to my doctor with an email from medical experts suggesting areas for follow up rather than what appears an overly long and apparently random list of symptoms/possible reasons from a lay person’s internet research. My GP really does not have time/experience, and the UK system is not set up for a considered analysis of long term chronic health problems that don’t fit a neat diagnosis. I think people in my position often feel very alone trying to do their own detective work and then not be taken seriously.
I know the spectrum of possiblity is wide but now I have the hope we can work through your suggestions logically and see where this lands me up. I am hopeful for a diagnosis so that i can at least work with this rather than facing more years not knowing what is wrong with me and struggling with the effect my symptoms have on my life.
You provide a unique service. Thank you so much. Best wishes, PM