I've been having symptoms for a year now, and have seen many doctors and specialists.
Weakness, Weight Gain, Purple Stretchmarks on stomach, arms, breasts, and the insides of my legs (they tend to die down then get redder every few days) joint pain, insomnia, fatigue, fast heart rate on average 100-130, acne, back pain, swollen hands, swollen ankle on one leg, a dry cough, nausea and sickness, bad reaction to alcohol, hot flushes (any time can drench my neck and back)
Last summer i was bitten by a tick and the rash came up. Went to gp and he gave me antibiotics, however they made sick, so he changed be to others for only 5days. Following the tick bite i had a sinus/ jaw infection in October. Then the weakness started in my upper arms in November. From then on the weakness spread to the whole of my body and slowly all the other symptoms started. I had a lymes test in January and came back negative.
I went to a rheum spec who sore me for 5minutes and said i had fibromyalgia, i had a neck and head mri which showed nothing. I was prescribed antidepressants to treat the fibromyalgia, but nothing happened.
I went on holiday, and the nausea and sickness started. I was so sick for hours I was taken into hospital by paramedics, but they sent me straight home with anti sickness tablets (I am now on them several times a week)
A few weeks later i was taken to a and e because i have fainted, i spent five hours in resuscitation unit because my heart rate was so high, they associated it with it being a hot day...so sent home.
My GP then noticed I had put on a lot of weight in a short amount of time, and had started getting purple stretch marks on my stomach and on one arm. He thought I had cushings diesease, so I was referred to an endocrinologist. All blood tests came back fine except vitamin D. He sent me for a ct scan on my adrenal glands, and had urine tests and a dexa suppression test. All came back clear.
My specialist still thinks i have a rare form of cushings, because the stretch marks have spread to my other arm and onto my legs and all the way up my stomach.
I am wondering whether any of you have been mis diagnosed with cushings or if you have any comments on my symptom history. I have lost my job and i am unable to do anything. I am on Cocodamol all the time, which doesn't do anything.
Short declarative statements for simplicity of understanding. I'll gladly expand on any you have questions about.
If you had a rash (and especially if it was a bulls-eye) then you almost certainly were bitten by an infected tick and could have Lyme.
The 'stretch marks' are often a sign of Bartonella henselae----- a co-infection and often given by the same tick that gives a person Lyme disease.
Having a negative Lyme test doesn't mean much of anything since many of us (myself included) also had negatives but definitely have Lyme.
Since you're in the UK and have NHS that;s a HUGE problem I'm pretty sure you were given the cheapest test for Lyme disease. And the one that has the highest error rates.
Almost all antibiotics that are given to a person with Lyme will make them feel worse for a while. It's called a 'herxheimer' reaction. It will go away in a few days or a week or so. Unless you were so sick as to be critically ill then your doctor did you no favor by taking you off abx.
Fibromyalgia is a diagnosis given by doctors who want to stick their heads in the sand and ignore Lyme disease.
It's possible that you DO have Cushing's----- I'm not a doctor and certainly couldn't tell by your brief story------ but I've read where many people are dx'd with Cushing's when in fact it turned out to be Lyme disease.
lf you look on Google and enter Euro and Lyme you will find a support group especially for people in the UK who might be able to direct you to better resources (doctor's names, tests etc) than we in the States can. But the similarities are enough that we, here, can certainly give you much information.
Go to ILADS.org and start reading. :)
I'll be glad to answer any questions you have about my very brief answer. (Yes, that was brief! lol) Lyme and it's diagnosis and treatment is VERY difficult, especially when most doctors either don't know or deliberately turn a blind eye to it.
I would look for a local support group to guide you to a physician who understands Lyme. MDs who do not understand Lyme can simply overlook it as a possibility.
Don't feel you have to read the whole ILADS website. It is long and complex, and I know when I had Lyme, I could not have made sense out of it. Just know that it's available when and if you are ready to do some reading.
The important thing in my view is to find a wise physician. Seaching online for
"lyme disease" england
will find some links as a start. (Searching simply 'lyme england' will bring up many links to posts about Lyme Regis, so putting quotes around 'lyme disease' helps.)
Patient groups are often helpful by sharing their experiences with physicians who are up to date vs those who take the outmoded (in my view) of Lyme disease as rare and uneventful.
You were undertreated for Lyme Disease. Your symptoms are consistent with disseminated Lyme. This is a problem as early antibiotics usually kills it completely, but only if you take enough. You needed at least 4 weeks worth of Doxycycline, more if you took something less effective. The problem with insufficient abx is that it interferes with antibody production, practically guaranteeing that you'll test false negative on antibody tests in the future.
You need to tell your doctor that you didn't have enough antibiotics up front, and that now you seem to have disseminated Lyme. You need to be treated even without the positive test. If s/he won't, you need to get to a private doctor ASAP who will treat you.
The stretch mark rash is nearly always indicative of Bartonella. Lyme causes a round or oval rash, or sometimes hives. The stretch mark rash is very specific to Bartonella. I haven't been able to find anything else in the medical literature on line that causes a stretch mark rash. You need to ask for testing, but there is documentation out there that Bartonella testing is unreliable (frequently false negative).
Bartonella needs different meds than Lyme, and it must be treated before you can get over the Lyme. Rifampin is the usual first choice. There's no consensus on how long to treat it, but it usually takes several weeks or months, depending on how bad it is and how long you've had it.
Both diseases are poorly understood, and you have to become your own advocate to get treated properly. If you're not well enough to do it, do you have a family member who can step up and be your advocate?
I forgot to address your Cushing's question... Lyme loves connective tissue as it's low oxygen. Adrenals are full of connective tissue. Many Lyme patients find their adrenals are affected. I had nearly all the symptoms of adrenal fatigue syndrome myself, which is closer to Addison's, the opposite end of the spectrum from Cushings. Adrenal dysfunction is consistent with Lyme Disease.
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