Could this be lyme's ? i don't know what to do..

[filfil52]

Hi..
i need some advice on what to do..
this is my story so far..

I suspect i may have Lyme's otherwise i'm confused as to whats going on..
November/December 2011 i went into a woods with friends, then early December my mum comes back from scotland working in the highlands to see me.. somewhere around the 5th-12th i was scratching my head in the night plus the following day.. i combed out a bug which i'm sure wasn't lice but i'm not 100% (i since found a body lice in my bed which i saved), then all of a sudden the itching stopped and i had a lump  at the lower back of my head which i still have a tiny lump and red mark.

Then on New years eve night i had a weird sensation in my head and was feeling a little anxious.  on the 3rd of January everything started..i began finding it extremely difficult to concentrate, my vision started getting fuzzy/visual snow like,  and this made me really anxious. I've seen at least 10 doctors, been to see an eye specialst and nothing wrong with my eyes, i've done 2 blood test one of which was looking for lymes but came back negative and everything else appears completely normal. My symptoms have been changing..

my main symptoms currently are anxiety, visual problems (after image, light sensitivity, visual snow), sensitive ears.. my doctor just prescribed me citalopram 10mg for a month and this has eased the extreme anxiety..

this has ruined my life.. from 3rd Jan to 17th feb (now) i have temporarily left my job and moved back with my parents :(

My Symptoms so far:

Ears
Sensitive to sound/loudness (constantly)
quieter than normal (randomly)
fluttering inside my ears (randomly)
shooting pains in left ear
tinitus in my right ear

Eyes
Visual snow/haze (5weeks)
Afterimage (2weeks to present)
Increase in floaters (1week to present)
blurring my eyes on purpose frequently (since the start)
sensitive to brightness (2 weeks)
big decrease in night vision (constantly)
pains behind eyes (randomly)

Brain
Brain fog/dream like state (3weeks and has started again)
extreme difficulty concentrating (randomly)
Confusion (getting lost)
Bad memory/forgetfulness
difficulty: reading, spelling, making decisions, understanding peoples reactions (had for 2 weeks)
panic attacks
severe anxiety (stopped going out, fear of being left alone in public places and fear that i'm going mad)
vivid nightmares
shooting pains all over my brain
brain ache (feeling bruised and saw, like when biting into hard food it feels like my brain vibrates and hurts)

Body
Stiff Neck (really hard neck muscles)
stiff hands, feet, jaw
feeling like my knees are going to dislocate (for one week)
random cold hands and feet
numbness in cheekbone area
tremors/shakes
Body jolts/twitching/muscle spasms (randomly)
random extreme tiredness + muscle weakness
impotence for 1 week
difficulty waking up after sleeping and not feeling satisfied when waking up (even prior to it all starting)
nose ache once
right elbow pains
pins and needles alot in my sleep at the start

I really don't know what to do :(  the doctors don't seem to know whats going on either..

I;m from the UK... anyone got any ideas????

[Ricobord]

One more thought, doctors who treat a lot of Borrelia patients are saying that about half of their patients are negative on the screening test, even if they're positive on the Western Blot.  I was negative on the blood screeing test and on my spinal fluid test.  Many people don't have any antibodies in their CSF, so unfortunately, a negative does not exclude Lyme. If you come up negative, insist on a Western Blot.  

[nutrinut_bob]

Certainly appears to be a tick bite you have pictured on your profile.  Thing is when the term Lyme Disease is used, it isn't only borrellia that is pathogenic.  Ticks carry a lot of other organisms they can pass on ranging from microscopic to macroscopic.  Those you have posted above have mentioned some of the microscopic, but like fleas and mosquitoes, they can even pass on some species of parasitic worms. I know, not a good thought for someone who is suffering from anxiety, but true.

[JackieCalifornia]

No need to apologize ... we've all been there or are there now.

Glad the anxiety is lessened a bit.  Have you tried magnesium supplements? I found it helped calm me a great deal.  Any variety ending in -ate:  magnesium malate, orotate, aspartate, etc. are supposed to be easily absorbed.  Lyme uses up magnesium in the body.

About your test results ... these tests are NOT very accurate, and I would find a Lyme specialist for an interpretation.  Non-Lyme specialists put complete faith in the tests, but that means they overlook people very ill with Lyme.  'Equivocal' means maybe yes/maybe no.  Depending on what markers (called 'bands') on the test were positive, a Lyme specialist might, given symptoms and history consistent with Lyme, be able to diagnose you.

The blood test you are now having may be a second level test, done after a positive first one (like you seem to have had) to check on the accuracy of the first test.  Even with both tests, an MD who looks at YOU and not just the test result is needed.

A lumbar puncture is not useful for diagnosing Lyme, from what I read, and neurologists generally are not believers in Lyme.  Your neuro may be different, and may have seen the light about Lyme, but most of them don't.

So, after you've done these things, come back and let us know what happened, okay?  

If you google/search

Lyme disease UK

there are some good links to help you.

[filfil52]

thanks for replying to my message one and all, it means a lot. Sorry i haven't got back sooner i've just been trying to cope.
The Citalopram 10mg has helped so much.. my anxiety was completely overwhelming, and was certainly making things much worse. Unfortunately much still persists.
I was recently retested for Lyme's and my test came back inconclusive (IgM equivocal - not sure what that means) they are now doing another blood test, lumber puncture, MRI and i'm seeing a neurologist.

hopefully this time i might find a little more about what is going on.
I will keep you informed

[Ricobord]

I'm also thinking Lyme and Bartonella.  I have both, and we have an awful lot of symptoms in common.  Some doctors here who are familiar with both have observed more intense neurological and neuropschiatric symptoms in people coinfected with both.  In the U.K., you are more likely to get borrelia garinii rather than the borrelia burgdorferi that is here in the U.S.  B.garinii is associated with a predominance of neurological symptoms and only rarely causes the arthritis that is so common here.

If you're testing negative (as I did), you might try to find a doctor who will authorize blood tests at IGeneX in California.  People send in blood samples from all over the world to this lab as they specialize in tick borne diseases.  You'll have to pay up front for the tests, but if it helps you get the diagnoses you need to start treatment, it'll be worth every penny!  I've also heard there is a lab in Germany that is good at finding it, but I don't know the name.

Good luck!

[JackieCalifornia]

There is no official specialty designation for Lyme docs, but you'll see the term LLMD, short for 'Lyme-Literate MD', which is patient slang for an MD who thinks bigger thoughts about Lyme and its co-infections (bartonella, babesia, etc.) than so-called mainstream medicine.  If you ask a doc is s/he is an LLMD, the answer will most likely be 'no', because it is not an official designation.

LLMDs are often members of ILADS, International Lyme and Associated Disease Society, a voluntary group.

ILADS takes a different view of Lyme+ than the Infectious Disease Society of America (IDSA) and other groups.  The IDSA is the main voluntary group for MDs specializing in infectious disease, but the group has become politicized, and advances in medical research on Lyme have not been recognized by IDSA. ILADS has stepped in to take the lead in discussing advances in diagnosis, understanding and treatment of Lyme+.

There are no tests required to join ILADS, because it is a view and a philosophy which the members have in common.  LLMDs do not all agree, because (unlike IDSA) LLMDs are humble enough to know they don't know it all.

Similarly, when AIDS was first recognized in the 1980s, little was understood about it, so this situation is not unprecedented in medicine.

[mkh9]

Hi JackieCalifornia,
I was thinking about bartonella as well. I didn't know they had Lyme disease specialists. Is that in the US as well? That is good news.
mkh9

[JackieCalifornia]

A Lyme specialist will, after take your history and symptoms, know what additional tests to order, including for babesiosis, bartonella, etc., which are, as mkh9 says, carried by the same ticks.  That's another reason to see a Lyme specialist, because nonLLMDs are often not familiar with co-infections.

The right doc will know what seems likely/possible.

[mkh9]

I wonder if you shouldn't get checked also for Babesiosis. It has similar symptoms though less prevalent and is transmitted by the same tick.
mkh9

[JackieCalifornia]

Lyme tests are notoriously inaccurate, and docs who go the route of wanting to rule out lupus and MS often forget to come back up the path and look more closely at Lyme -- or more accurate, refuse to look more closely.  Lyme is too often marginalized by ID docs and neuros as unimportant, hard to get, and easy to cure.

The upshot of this approach is that Lyme never gets due consideration from these docs, who rely too heavily on an initial negative test that is ... notoriously inaccurate.  It's a split in the medical community, and one that those of us with Lyme have frequently been subjected to.

[mkh9]

I wasn't suggesting that the CT was to check for lymes disease it is, as I mentioned before, that a lot of your symptoms sound neurological and your first lymes test was negative so the CT is to see if there is somethings else going on. Did they do any other tests than the lymes test? I'm going to look up something I'll get back to you.
mkh9

[JackieCalifornia]

I would not place too much emphasis on the tick, rather on the symptoms and finding a Lyme-aware physician.

In the US, neurologists and infectious disease MDs are often the LEAST clued in about Lyme, because they adhere to the diagnostic and treatment guidelines of IDSA, the Infectious Disease Society of America, which in a nutshell hold that Lyme is hard to get and easy to cure.  

Not so.

Finding a doc who is a more progressive thinker about Lyme and its co-infections is, in my experience, the way to go.  Also, CT scans are NOT diagnostic of Lyme, from what I read -- SPECT scans are, because they show areas of low blood flow in the brain caused by swelling.  CT scans show lesions, but Lyme doesn't produce lesions like MS does.

[mkh9]

Sorry you are having this problem. If it is a tick it is possible to have lymes. I agree if you can get the tick tested it would good. Also, maybe it was too soon to develop antibodies to lymes when you were tested so you might want to get retested. It doesn't sound by your description that you actually found a tick but hat you had a bite of some sort. If these tests are negative you may want to see a neurologistor  as some of your symptoms seem neurological as well. They may want to get a CT of your head/brain too. But it is quite suspicious that you had a bite followed by symptoms. You didn't have a fever or rash anywhere? Alternatively, an infectious disease specialist? Keep us posted.

[JackieCalifornia]

Welcome to MedHelp Lyme --

You do a very good job of recounting your symptoms and history, in spite of how you are feeling.  

That you saw a tick at all makes you one of the few -- many of us (including me) never saw the little devil that bit me.  If you still have the tick, you might put it in an envelope or a little jar and take it with you to the doctor, so they can test the tick, if the dr takes a mind to.  Be sure to wash your hands with soap and water after touching the tick, because they are quite germy.

There is a great deal of 'Lyme denial' among US doctors, and it sounds the same in England.  The trick then is finding an open-minded MD.  As it happens, just yesterday someone new posted here -- she is in Richmond, Surrey, and her post just below is titled:  

"American / European Lymes" and her screen name is Tidalrise.

You might read her post and our responses, and then if you have questions for her about how to go about locating a dr in England, you can send her a 'private message' that will go straight to her telling her to come here and see your post and your questions.  It is all done through screen names, not your real name, and so is still private that way.

Hover your cursor over your own screen name up above here, and a box will open up that has a link to 'send a message'.  Click there, and then enter her screen name:  Tidalrise.  She will get a message from this website that she has a message waiting.  She sounds thoughtful and proactive and might be able to send you toward a Lyme specialist.

Lyme is a controversial ailment, so don't be surprised if you find lots of blank looks and outright derision and also some very strange people with strange treatment regimens (so-called 'protocols').  Because Lyme is cutting edge medicine, there are lots of bumps and oddities that will disappear once science and medicine finally get a grip -- which is long overdue.

Let us know if you get some direction from Tidalrise or otherwise, and also if you don't.  We'll do the best we can to help send you in the right direction.

Above all:  you are not alone in this, and that you are asking the right questions to either rule out or be diagnosed with Lyme is exactly what I would do.  No one here is medically trained, but we've been where you are.

Let us know how you do -- best wishes --