I know that may be a dramatic title, but in actual fact it doesn't get anywhere near to how i feel. I am at my wits end.
I am posting this on a number of boards so i apologise if you see this in more than one place. I also apologise if this is a little long winded.
I am a 41 year old, previously extremely fit / healthy male from the UK.
At the beginning of August this year, i became ill with flu like symptoms, tiredness, general malaise, tremor in my index fingers, low grade fever etc. I also had recurring perfectly round mouth cankers. I couldn't shake this off and visited my GP who took loads of blood tests. Shortly after i began getting really intense pains in my lower right rib area. It felt like my liver was twice the size it should be.
My liver was scanned along with spleen and kidneys. All normal. My bloods all came back fine, with the exception of raised Epstein Barr titres. My GP told me this was probably a flair of an old infection. Although i got the impression he didn't really know what was going on.
September came and went, as did the illness, some days didn't feel too bad, but most times i felt at best "wrong". October was the same, no improvements / changes.
in November i started to take olive leaf extract, L Lysine and milk thistle in an attempt to support my failing body. I revisited my GP, who did more blood, all still fine. I also began having facial flushing and a an intermittent rash on my cheek bones.
In mid November i began to feel incredibly dizzy / lightheaded and noticed a ringing in my ears (tinnitus) along with some minor cognitive issues like seeing letters the wrong way round.I was also getting really odd and and random muscle twitches / spasms in various parts of my body. I also had a really spaced out, wooly head feeling, really difficult to describe.
I ended up in the emergency dept. Of my local hospital on three consecutive evenings. I was assessed by three different Drs, more blood and head CT scan. All normal.i then went on to see 2 further drs on a ward. They could find nothing. The next day i went to see a neurologist who gave me the most thourough work up ive ever known... He could find no abnormalities.
Since then i have had more really odd symptons / sensations. Ive had some strange feelings on my tongue, almost like numbness, or if there are hairs on the tongue or throat. the twitching / spasms come and go absolutely everywhere. Ive had some crampy feelings in various parts of my legs and feet and a feeling that my ligaments are shortening. i sometimes get a feeling that something is crawling on my skin. I also sometimes get a feeling that someone has flicked water at me. The most bazaar thing though is above my left eyebrow... When i raise it, it feels odd and then feels like momentarily it doesnt drop down when i stop raising... Like i said, bazaar.
I have been back to my GP. He has listened, examined and says he can find nothing wrong. I have seen SEVEN doctors and a neurologist Doctor since November.
To top it all off ive now got the flu / chest / cough thing back again which has been recurring since this all started in August.
I am sorry i have droned on so much. I really am so desperate with all this. My life has become an existance that is isnt worth it. Any advice / help / similar stories would be gratefully received.
I certainly understand your desperation. I've been there myself. For me, it was half the knowledge that the MDs were clueless, and the other half was the direct physical effects of the illness. But whether you have Lyme or something else, you certainly deserve to find out what it is so you can get it treated and be well again.
Even if you do not have Lyme or one of the other infections the same ticks often carry ('co-infections'), a Lyme specialist may be very helpful in sorting out what is going on. In my experience, Lyme specialists (casually called LLMDs, or Lyme Literate Medical Doctors, by us the patients) are more broadminded generally and therefore are able to see beyond the limitations other MDs seem to carry all too often.
I know that National Health puts limitations on certain aspects of medical care, but that there may be other avenues and still room for independent-thinking MDs. I just searched --
lyme disease england
-- and got quite a few interesting links. Carrie's right, it could be lupus, but an LLMD would/should take that into account as a possibility in the differential diagnosis. I personally saw 20 MDs before finding my way to an LLMD, so it can be a long trail. One of the 20 docs actually ran a Lyme test on me and it was positive even by the skewed criteria the nonLLMDs here require , but the doc dismissed it because I was not sick enough, tho I was terribly ill and the doc knew it. The medical profession is in a state of profound denial and confusion, and it takes pluck and desperation to pierce that problem.
Lyme is the on the frontiers of medicine, so dealing with it and with the medical profession is not easy, but it is definitely worthwhile. I've been there, and done that.
Please try that search (above) online, and keep poking around until you find an MD with an open mind who appreciates that Mother Nature is far, far trickier than is often realized.
You say: "I'd just like my life back. I sit here thinking that will never happen."
That statement is something all of us here have felt at times, and it comes and goes. There is probably not a short route to a quick cure, but you can get better. Depending on co-infections, treatment can be more or less complex and lengthy .... and in any event, treatment is *not* short like most bacterial infections. Think of tuberculosis, which like Lyme is bacterial: treatment is commonly 18 months. Lyme's co-infections complicate matters and may prolong treatment, so none of this is fast or easy, but it is definitely worth doing.
I was never a big believer in vitamins and supplements, but I have learned that Lyme etc. mess with the whole body to such an extent that vits and supps seem imo to be a necessary part of life going forward. Which beats being sickly ANY day.
I completely understand what you are saying about feeling isolated. That feeling will not go away overnight, most likely, but keep plowing ahead. Things WILL get better as treatment takes effect.
Hold fast! Keep us posted on how you are doing. You are not alone.
Wow, reading this, I have had many of the same experiences and it also began in August for me. I don't have the canker sores or a couple of the other symptoms you have, but otherwise, I feel we have had similar symptoms.
I went to the ER in mid August and everything was 'normal.' I also had a CT scan, MRI, EKG, etc etc etc. After 10k of testing, there were no answers.
I went to a GP a month or so later and asked to be tested for mono. My EBV was elevated, but monotest negative, they still said it was just mono.
The end of Nov., I went back to the same GP and requested a lyme test and she also did ANA (this tests for autoimmune things, like lupus I believe) and thyroid tests. Everything was good EXCEPT I showed positive for lyme.
She started me on doxy and last week I found out I was positive for lyme on the Western Blot also. I have an appointment with a LLMD later this month and I am really hoping he will have some answers and that I can heal.
I just somehow got through my doctoral graduation activities this past weekend and my bf also proposed etc... so now I am exhausted. I have good/bad days, but do feel generally better since being on the doxy.
As JackieCA said, you should try to find a LLMD if you can and get tested, you should also get tested for autoimmune things going on. I worried about lupus because my cheeks get flushed and red sometimes now and they never did that before, but I guess it's all just lyme for me...
I hope you can get some answers! I have trouble with going into more debt with all of this, but I think you must do it to get yourself back to normal, so I hope it will all be worth it in the end.
Sending positive thoughts to you. I know how horrible it can be.
About the cheeks flushing ... I never got red cheeks, but would get an irregular reddish patch on my forehead just above and between my eyebrows. It came and went.
The variety of symptoms may be due not only to individual reaction to infection, but also to the different co-infections. It's what make Lyme tricky to diagnose, and what also confuses docs who don't understand the changeling nature of Lyme.
About getting tested for autoimmune aspects as AlllergyNerd suggests, it's a good thing to rule out, but be careful that the doc doesn't do just the autoimmune testing and analysis and stops there. Not only do nonLLMDs tend to diagnose lupus etc. (which are autoimmune in origin), but they may also simply stop looking once they find symptoms that could support a lupus or other autoimmune condition.
And here's the final twist: the IDSA docs (Infectious Disease Society of America), who are totally in the bag that Lyme is (1) rare, (2) hard to get, and (3) easy to cure, maintain that once you've had a couple weeks of antibiotics against Lyme, then any continuing symptoms are not evidence of a continuing Lyme infection, but are the result of your confused immune system thinking you are still infected with Lyme *but you are really cured and your immune system doesn't know it*. The IDSA docs call this an autoimmune reaction, and it is the basis for their refusal to treat further any persisting symptoms of Lyme.
So it's a Catch-22: you were diagnosed with Lyme, you were treated for Lyme, you still have symptoms of Lyme, but you were fully treated according to IDSA standards, regardless of how you feel, what symptoms you have and what your current tests show. So ... you look, feel and test as though you have Lyme, but you do not actually HAVE Lyme because ... the docs say so.
So by all means get tested for autoimmune conditions like lupus, but if your doc doesn't 'believe' in Lyme, that's where the thinking will stop.
Worse: the treatment for lupus are steroids, which suppress the immune system, which is the exact opposite of what should be done for a bacterial infection (which Lyme is).
And if you get a diagnosis of the very trendy 'fibromyalgia', note that it's not defined as a disease by mainstream medicine, but as a *syndrome*, meaning a collection of symptoms with no identified cause. There's some thinking that fibromyalgia is really just untreated or undertreated Lyme.
Bottom line: be sure to find a Lyme specialist if you think you could have Lyme.
I've been through a similar decline since August, although my fatigue started exactly a year earlier. My next symptom was shortness of breath, which started in late January '11. In late July, I got a shot of prednisone for my "asthma", and within 4 days, I was in the ER with mental confusion, significant shortness of breath, inability to take a deep breath, and general weakness. They gave me more prednisone. That's when the downward spiral took off. I ended up seeing 12 doctors, had multiple MRIs (brain lesions!) and CT scans, had another ER visit and a 3-day hospital stay for abdominal pain. A blood screening test and a CSF test for Lyme were negative, leading doctors to believe that excluded Lyme, even though it was printed below the test results that "A negative result cannot be used to exclude Lyme disease."
I finally paid out of pocket for IGeneX blood tests and a consultation with an LLMD. My IgM Western Blot was CDC negative, but IGeneX said it was positive. I had a positive band on 31, which is specific to Borrellia. This band usually shows up in people infected for more than just a few months. I also tested positive for Bartonella, which explains why most of my symptoms are neurological, as per Dr. Burrascano.
This document also contains Dr. Burrascano's symptom checklist. Some of my symptoms I only had for a few days or a few weeks. Others have stayed. Doctors usually think that if a symptom goes away, it's irrelevant. But with Lyme, it's significant, as symptoms coming and going is a classic sign of the disease.
Another thought: I found that magnesium relieves my shortness of breath and my muscle twitching. Oral supplements are okay, but you have to take a lot (abt 250mg 2 x /day) because the body is so ineffecient in using it. More useful is to take a hot/warm bath with a cup of Epsom Salts (magnesium stearate). Your body absorbs it more efficiently this way. Then see if you feel a bit better in 1/2 - 1 hour. If so, you probably have magnesium deficiency, a classic sign of Lyme/Borrellia. Magnesium deficiency can cause muscle twitching and spasms, and heart irregularity, so taking Mag is useful for reducing these symptoms.
One more thing that has been HUGE for me in feeling better is to go gluten and dairy free. I did this on the recommendation of another "Lymie" and I was amazed. Five days later, my intestines were practially 'normal' again, after 2 months of not being normal. Also, some of my cognitive issues declined. I didn't feel as much brain fog. I've cheated twice, once with cookies and once with some gnocchi. Both times, I felt crummy and foggy the next morning for hours. So, I'm convinced.
I do believe that every symptom you mention is on my doctor's symptom check list (which is longer than Dr. Burrascano's...they've learned more in the last 6 years).
Just take it one day at a time, as the trite saying goes. 'Trite' often means 'true', and in this case, that's accurate. We've all had bad days and nights, fears, desperation, confusion, aches, pains, you name it. The hardest part for me was that the infection was messing with my brain and my emotions -- it colors everything, which makes objectifying the physical effects of the illness is difficult to impossible.
Often I would come through a few days' bad patch, and only as I was coming out the other side would I realize it was the bugz messing with me. While I was IN the bad patch, I wasn't able -- despite plenty of experience with bad patches -- to identify and objectify the bad patch as being due to Lyme+. Although I recognized this each time it had happened, I was never able to make that recognition AS it was happening. Like driving through a rain storm but not remembering that it doesn't always rain 24/7.
It's the infection(s). Very much *neurological* effects, but worse in some of us than others. I think mine were about middling compared to what others have described.
I don't know that I'd say it took courage, but stubbornness sure helped. Hang on, stay in touch, let us know how you do.
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