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I think I have Lupus at 19... And am somewhat relieved!
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I think I have Lupus at 19... And am somewhat relieved!

So. This is quite a complicated situation. Or at least, it's been made out to be one. I went to the doctors 4 weeks ago with flank pain following cystitis. I wasn't concerned in any way, assumed it was a kidney infection and knew exactly what to expect.
Was given nitrofurantoin.

Two days into the treatment I started feeling stabbing sensations in my stomach. That later developed into pain in all of my muscles, felt like I was dying. Stopped taking them.

Continued to have the tell tale signs of a kidney infection and so was prescribed trimethoprim. And then amoxicillin. And then co-amoxiclav. I'd started to notice a rash I'd developed on my back and put it down to an allergic reaction to the antibiotics. Not only that, but I had been getting severe chills and muscle spasms at night. I remember saying to one doctor 'it's like having electricity pumped through me'.
The kidney pain still persisted and yet all urine cultures came back negative, no bacteria,  but white blood cells present. I was then told to come off the antibiotics as they suspected a kidney infection to be unlikely. The symptoms themselves have been coming and going really, doctors haven't a clue what's going on.
I have the sensation, right now actually, like I could convulse. It's a strange feeling. There's a pressure at the back of my head and like a fuzziness everywhere. A constant ringing in my ears as if I were about to have a panic attack or something. My muscles hurt, particularly my fingers and feet. They make cracking sounds when I move them. The rash on my back has become itchy and I have a little bit on my cheeks. Also have: a sore throat, flu-like symptoms, a 'bubbling' sensations sometimes in my muscles,and my hand became swollen yesterday.

It was suggested today by a doctor on the 111 NHS Service that it could be SLE. I looked up the symptoms, and sure enough, I seem to fit the bill. Just reading through these forums have confirmed my thoughts. Wondering if the nitrofurantoin caused it.
Anyways, I decided to post because the muscle spasms and the feeling in my head is stopping me from sleeping. To be honest, I feel fairly relieved to find something that makes sense. I'm seeing a doctor tomorrow, hopefully he will refer me to a rheumatologist. I am feeling apprehensive of course, but am reassured by the SLE outlook. I'm sure I will post more frequently as it develops.
Beth x
10 Comments Post a Comment
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Beth, do not settle for this, as the idea of "knowing your enemy" being a satisfactory solution in light of  your suffering and all the complications, might be very limiting, in terms of quality of life in the longer term.
You may have a  window of opportunity to do something to possibly prevent:
a. Full blown SLE.
b. More significant organ involvement.
c. SLE entirely, if there's no significant organ involvement. (very optimistic).
d. Other serious complications

If you were prescribed Nitrofurantoin and  decreased renal function had not been ruled out, this would cause it to remain longer in the body and reach much higher systemic effects, than what it was designed for.

Also it may cause an overgrowth of microorganisms not killed by the medication, with results such as yeast infections (Candida) and/or resistant bacteria.
Have you been checked for Candida (which could have pre-existed prior to the onset of your issues)?
The kidney is the most common organ involved in systemic Candida and to be honest with you, doctors rarely check this and yet it might have to do
with most of your pathology!
Specially in light of the additional antibiotics prescribed, this could be the case indeed, so you would need to rule out these possibilities.

Another possibility as an underlying cause of suspected SLE is low thyroid function.
Please read the following thread at its entirety ( if interested):
http://www.medhelp.org/posts/Lupus/Low-T7-FT4I/show/2240716

Pathogenic Mycoplasma infections and co-infections are notoriously difficult to detect by standard blood tests.
For details search her under Dr. Garth Nicolson, an expert in this filed and a part-time MedHelp contributor.

My opinion is that your outcome,  will be markedly better, if you take a more holistic approach.
If you can afford to see a reputable Naturopathic or Functional Medicine Doctor,I think it would be a step in the right direction.

If you need more details, let me know, however, please note that my suggestions and comments do not constitute medical advice.

Best wishes.
Niko
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I am really concerned about you.  I am not leaning toward the lupus as this exact thing happened to me.  After reading your post I got chills.  Its exactly what I went through.  Including the rash after being on antibiotics.  It is called the herxheimer reaction and when you have a parasitic disease it is what happens when your body has antibiotics and also have lyme disease.  I was tested in 1994 and was negative and was sick from that day forward and I finally had people come to me telling me not to go with my negative results but to have more advance testing and here I am finally diagnosed....Please let me know what you think.  This is a very serious disease left untreated.... hugs
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Hi,
I've already considered Lyme Disease. My symptoms have developed now. I have some kind of peripheral neuropathy, along with migratory joint pain, strange feeling in the back of my head that makes me feel unbalanced (very hard to describe), massive sun sensitivity (makes me feel fatigued and tired), rash on my face, rash on back has gone, slight visual disturbances, muscle spasms, heart palpitations, chest tightness, difficulty breathing etc.

Honestly I could go on. What made me doubt lyme disease was the fact I have never seen a tick bite on me/rash, come from the UK where it is less prevalent, am extremely sensitive to the sun (this is a feature of lupus and NOT lyme). Nitrofurantoin is a drug that has links to lupus, can induce a lupus-like-reaction in people after a very short while. I know my symptoms sound like lyme disease, but it just seems incredibly coincidental that I had been bitten by a tick around the same time I took a prescription med that can induce these symptoms? Do you see my confusion?

I have had blood tests for virtually everything, all of them come back perfectly normal. I also have a generally poor reaction to anything with vitamin C in it. Which surely should help a lyme patient -- lupus, on the other hand, wouldn't need the extra immune system help. Nuh uh.

I'm not discounting the idea entirely, but it doesn't seem to fit.
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Hi!

All of that is very interesting. I'm feeling a bit bogged down with information at the moment -- there's so much to consider and I don't feel I have the fine tuned medical discernment to pick the best option.

I'm looking for a naturopath (I'm from the UK) and it's proving to be quite difficult.

My symptoms are extensive. I've never had any health problems excluding a few kidney infections/bladder infections before the episode with the nitrofurantoin. After that, I reacted to every single load of antibiotics I was given. And not in a typical allergic reaction kind of way. Exaggerated variations of the symptoms I have now. As I've said to the lovely concerned lady below, I've considered lyme disease as an exaplanation. It seems to fit symptom-wise. However, I'm sure lupus can cause all of that too. Plus I have sun sensitivity that lyme patients don't seem to have.

Not like anyone would want lupus.. I just don't know. There's just too much to think about when I already feel compromised. My doctors are not concerned because all of my blood work appears normal. Gah!
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Regarding the Candida suggestion: would that make your discharge appear an abnormal colour?

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Oh, I also have fatigue.
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1530171_tn?1418143903
I have good and bad news for you.

Yes to the discharge color. Any particular odor?
Yes to the fatigue which could be pertinent to either Candida
and/or *Hypothyroidism.
Please go to the link I gave you and read the
entire thread, There's a blank space in the middle-DO NOT consider it as the end of the thread, as vital information follows this gap in the posts!

The important thing to note here is that should you pursue a diagnosis of Lupus and Lymes Disease there are 2 large issues associated with these.

1. They are notoriously complex to diagnose correctly (more so Lyme's
Disease) and it might take years.
2. If you do not rule out Candida and or Hypothyroidism and getting them completely treated/regulated (should you indeed have one or both) you're running the risk of NEVER improving substantially, whether you get diagnosed eventually with Lupus, Lymes or other such complex condition!!!

* Hypothyroidism is missed more often than not when doctors use results from standard serum thyroid tests T3, T4 and TSH.
You can find details in the link I gave you!

These conditions are able to strip you from the ability to repair and heal,
so I strongly suggest you consider my recommendation.

Should you need any guidance and more details, please do not hesitate to
contact me here, either by posting again or private messaging.
The search for an ND is a good start, however, in the interim, follow up as much as possible on your own through your doctor.
Like getting Free T3, Free T4 AND Reverse T3 tested -even if NHS may not cover all these 3 tests, it is worth to pay for them yourself.
Candida you can do a self-screening test.
Just search under Saliva Test for Candida. (not diagnostic).
You can do an  anti-Candida protocol on your own, if positive.
Just let me know and I can help you.

Cheers,
Niko

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Is this why you hear of people curing lupus with diets?
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This would be an indirect association.
Like when some of  the underlying causative factor(s) have to do with allergies, sensitivity, intolerance to certain foods or various nutritional or vitamin deficiencies.
For example, one may have low thyroid function because of low iodine or iron.

Cheers,
Niko
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You don't have to recall a tick bite.  As far as I know I never recalled a bite but it could have been on my scalp or on my back and I had never seen it.  I tested negative with the elisa test and positive with Igenex labs in California.  You can have multiple diseases.  I have been diagnosed with Lyme disease, Lupus, Sjogren's Syndrome, also I was just diagnosed with Inclusion body myositis from a muscle biopsy and they also believe I have Dermatomyositis as well.  I have a eye rash that they haven't determined is from lupus or Dermatomyositis.  Let me know how you make out or if you need anything?
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