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New Member

Date Joined Mar 2015
Total Posts : 19
   Posted 3/16/2015 4:35 PM (GMT -6)   
Hiya lovely people. I'm 19 years old, female and suspect I may have lyme or lupus. So, my story's like this:

Came to the doctors with kidney complaints, had kidney infections before and this particular time it followed cystitis so the doc was confident enough to give me antibiotics without testing a culture. Ended up reacting to the nitrofurantoin and that gave me a rash, stabbing sensation in all my muscles and nausea, dizziness, went away about two days later. It still seemed as if I had a kidney infection so returned to doc, was given trimethoprim, had this before, but ended up feeling incredibly nauseous and removed from reality, hearing went slightly and stopped taking them. Was then given amoxicillin, I actually felt better initially, for about a day, then night sweats and strange feeling in neck, abdominal pain came, also nerve twangs. (lyme disease gets better before gets worse, also amoxicillin is given for treatment). Continued to worsen til 4th day. Was put on co-amoxiclav and within hours of taking it, started to tremble and my nervous system seemed off. Like my muscles were spasming and I was getting nerve pain, felt like a seizure. This I think is called herxing. Was diagnosed with hyperventilation syndrome 4 days later, developed massive anxiety. Felt constantly wrong. Two days after that, felt a sudden onset of fatigue and pain in my head, lower abdomen, and hand. Went to the doctors, noticed swollen glands, took blood, only slight inflammation. Continued to worsen with this diagnosis. Was woken up in the middle of the night with vertigo. Continued to deteriorate, doctors can't explain. Started getting irregular heart rhythms. Had strange seizurey type episodes where brain would drop me out of the room suddenly and my body would spasm. Dizzy constantly, back of head feels wrong. Joints start hurting, right hand particularly. Left knee too. Fast forward to now where I feel like I'm dying. Tremors at night, struggling to walk, pain in random places. Tingling sensations and nerve pain. Chest discomfort. Photosensitive rash on my face that burns. Nausea, muscle spasms. Extremely sensitive to stimuli. Trembling. Burning sensations on skin.

These are just a few of the symptoms. It's worth noting that other than the suspected kidney infection, I felt fine before the antibiotics. Lupus is a concern, mostly because I have an Aunty with Ms and I know autoimmunes tend to cluster in families. Plus, my age and the fact it can sometimes be brought on by certain medications, or can at least be triggered by some. Is this true? The rash on my face, whilst not a typical lupus rash, does get worse in sunlight.

Lyme is another thought. I know these two share so many symptoms, but I suppose the fact I reacted to every single antibiotic would suggest a kind of herxing? I really don't know, I'm only speculating. I'm seeing an infectious diseases specialist tomorrow but am aware that may not bring me any answers initially.

Of course I don't expect anyone to diagnose me, but it'd certainly be very helpful to get some outside opinions on this very confusing time. I can elaborate on my symptoms if needed. Thanks!

New Member

Date Joined Mar 2015
Total Posts : 19
   Posted 3/16/2015 4:41 PM (GMT -6)   
Also, I'm from the UK. I have cats and have seen ticks on them before. We also happen to live near a field where deer occasionally play. But only very occasionally, and I never go on it. Can you get ticks from cats? Sorry for all the questions!

New Member

Date Joined Mar 2015
Total Posts : 19
   Posted 3/16/2015 5:39 PM (GMT -6)   
It may be helpful to know this has all happened within the space of 8 weeks.

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 3/16/2015 6:14 PM (GMT -6)   
Lupus is diagnosed by a rheumatologist by having at minimum 4 of the 11 common symptoms, check out the link Diagnosing Lupus below. I don't really think the symptoms you've mentioned, nor the meds you've mentioned, have much to do with Lupus.

As far as I know, the cats could get the ticks from deer and then you from the cats...but I don't know if ticks in the UK carry Lyme, I think only some parts of the US have ticks with Lyme. (Best to ask about that on the Lyme forum.)

Hope you feel better soon,
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2002
"Life is far too important to be taken seriously." - Oscar Wilde

New Member

Date Joined Mar 2015
Total Posts : 19
   Posted 3/16/2015 6:29 PM (GMT -6)   
Thanks for replying. Nitrofurantoin has links with lupus, and I know everyone's experience is personal, and with any autoimmune disease, symptoms vary massively. Of course there will be some commonalities (butterfly rash etc).

I suppose I was just curious if Lupus can be triggered by medication? If one was already predisposed genetically.

Elite Member

Date Joined Jul 2009
Total Posts : 14475
   Posted 3/16/2015 7:48 PM (GMT -6)   
You can get lupus like reactions from certain drugs. It usually gets better after stopping the medications.
Lupus, RA, Fibromyalgia, Glaucoma, Asthma, Hypothyriodism, Sleep Apnea, Depression, Allergies, and benign familia tremors

When life throws you lemons....
Pick them up and throw them right back at them! :))

Veteran Member

Date Joined Apr 2006
Total Posts : 1344
   Posted 3/18/2015 5:14 PM (GMT -6)   
I have never heard of that drug given to a lupus patient. Lots of the precautions like kidney disease and anemia which most lupers have would eliminate using it.

Article from NIH on drug induced lupus.

MCTD (SLE Lupus, polymyositis, scleroderma). Diagnosed 2005. Kidney, liver, GI tract, dysphagia, raynauds, barretts esophagus, quadriplegic in 2005. Recovered and now active in downhill skiing, golf, hiking. Meds: amlodipine, benezapril, omeprazole, potassium, folic acid, vitamins, maxide.

Remain Optimistic and you can overcome.

New Member

Date Joined Mar 2015
Total Posts : 12
   Posted 3/19/2015 5:41 PM (GMT -6)   
When I first got sick 25 yrs ago my family doc thought it was Lymes. I went and saw an infectious disease doc who tested me. He said you don't have Lymes but I think you might have lupus. I was refered to a rheumatologist and he ordered the lupus panel and I was diagnosed with systemic lupus. The most important things I will tell you are:
1. Find a doctor that you feel comfortable talking to and that you feel listens to you.
2. I know how scary it can be when your body doesn't seems to be working. Try your best to relax and not get anxious. Understand that you will find the help you need and when you do, you will feel better. I have wasted years in anxiety over things that I had no control over, only to learn that it will all work out.
Your going to be ok. :)

Regular Member

Date Joined May 2014
Total Posts : 68
   Posted 3/20/2015 6:01 PM (GMT -6)   
I know Lyme disease is global and widespread across the us. It is definitely in the uk and Australia. There is an interesting documentary called 'under our skin' which you can find on YouTube which is about Lyme disease. I hope you find a good dr who puts you on the right path.

Regular Member

Date Joined Apr 2015
Total Posts : 48
   Posted 6/14/2015 11:43 AM (GMT -6)   
Hi beefany

Also from the uk. Just wondered if you had an update regarding your diagnosis?

Was previously under infectious diseases myself, was told I definitely had lyme but now have something mimicking Lyme??! Have now been refered to rheumatology for diagnostics
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