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Avatar universal

New to lymes - nobody understands or cares?

Hello, I have been bobbing around this forum for a while now but finally decided to make an account as I'm loosing my mind.

I am new to lymes, was infected in August of this year and was dagnosed two weeks ago. Long story short was bit at my brothers wedding in Kent, had the rash but doctors couldn't believe it would be lymes as it is rare. Had a phone call three weeks ago from my doctor who was still concerned from seeing me a few weeks ago and called me in. He had spoke to infectious diseases and told to go ahead with treatment. He prescribed be doxycycline for three weeks. This is my second week and it's killing me, I started off fine and now I feel like I've crashed and burned. I have no energy whatsoever, I'm on my fourth cold since I was bit, I have been vomiting non stop and everywehre hurts.

Nobody really understands and my mum who I'm really close with and understands everything, isn't even listening. All she keeps doing is trying to find an excuse other than lymes to why I feel the way I do. I am only 18 years old and have been working as an apprentice receptionist since the beginning of August. I hate my job anyway but this is killing me off completely as I work 37 hours a week and cover early shifts every day so up at 6am and not getting much sleep as my body aches. I was sent home Friday although I didn't want to be, I battled on yesterday and came into work but around 11 last night I was vomiting non stop. As I work the early shift it is hard to inform people when I'm sick, often leading me to carry on and just come in. Ended up texting my deputy manager as she is the only mobile number I have and she told me to ring at half 7 and then again at 9 to speak to the centre manager. Basically got told off for not ringing Alex and waking her up last night and that she has looked into lymes and can't find any useful information.

I feel like I physically can't work there any longer but I'm scared of her and scared of handing my notice in. The hours are too long and the job is emotionally draining. I don't know what to do but I know I need to get out and fast. I don't know what to do any more and sick of crying. I don't know who to turn to, I would really appreciate a helping hand right now.
5 Responses
Avatar universal
Hang in there!  You aren't losing your mind (although I know it sure feels like it) but it sounds like the spirochetes are fighting their eviction, plus your stomach is objecting to this antibiotic.  Double whammy - I feel for you.  The nausea and vomiting are likely from the doxy; the hurting all over and the mental turmoil and moods could very well be the Lyme.  Trust me, though, you want to get rid of the Lyme bacteria while you can so don't give up!  Is there any way you can take a week's leave from work to rest and try and get through this?  Hopefully you're in the middle of the worst part now and things will start getting better.  I don't know what the early Lyme alternatives to doxy are (my Lyme is unfortunately years past that), but I do know from other experience that some people have severe stomach reactions to it, and it sounds like you are one of them.  
It's REALLY good that your dr. is open-minded and persistent enough to pursue the Lyme treatment.  Can you call him and see if he can help with the vomiting?

Also, it might help with the pain if you can assist your body with detoxing, helping it to get rid of the toxins that the bacteria release when they die.  I'm guessing you are in Great Britain, and I don't know how available herbal tinctures are.  These are liquid herbal extracts that you add to water (10 drops or so in a half cup of water), wait a minute, and drink.  The burbur and parsley help your body detox the muscles/joints, and pinella helps with the nervous system.  I have found they help me with the pain from treatment and also when my emotions and mood go out of control.   Nutramedix is one of the standard brands here, but health food stores sometimes have their own.

There is so much information out there about Lyme.. I wish I could sit your manager down and educate her a little.  A search of Joseph Burrascano or Burrascano Lyme would bring up a bunch of links to the work of this now-retired but key researcher/lyme dr. if she really can't find anything.

Remember that Lyme can affect every system in your body so sometimes it helps to remember that it's the influence behind the chaos and craziness.   Hang in there and I hope things get better soon.  Keep in touch -
Avatar universal
Welcome to MedHelp Lyme -- we can certainly understand from our own dealing with Lyme what you are going through.

I just searched online for
      
                    "Lyme disease"  UK

and got some very interesting leads, including

www.lymediseaseaction.org.uk/about-lyme/faq/

(If the link is blocked out by this website, here is the link again, with extra spaces in it:

www.  lyme disease action.  org.  uk/ about-lyme/ faq/

In the US, and perhaps in most areas of the world, Lyme is still a puzzle to much of the medical profession.  You have encountered the 'old think' on Lyme, but there are good organizations and MDs who are more progressive in diagnosis and treatment.

Lyme is a complex ailment, but very treatable and curable.  The first step is finding a knowledgeable MD.  If your family is not understanding, show them what you find online and even send them here to this page.  Lyme disease is a relatively new infection, and many MDs -- even those highly educated and with long experience in medicine -- are not up to date with newer research and findings about how sneaky Lyme is.  The bacteria that cause Lyme are closely related to those that cause syphilis, and *no* physician would fail to take syphilis seriously.  Someday the physicians will all be caught up with the new information, but for now the thing to do is find a wise and knowledgeable MD through an organization such as that mentioned above.  

I had Lyme, as did someone else in my family, and once we were finally (!) diagnosed, treatment was straightforward (particular antibiotics -- for months, not weeks, due to certain characteristics of the Lyme bacteria) and we are quite well now, several years later.

Best wishes to you -- please let us know how you are doing and how we can help.  We've all been where you are, so we certainly understand.
Avatar universal
PS  Here is another thought:  A few years ago, a documentary film called 'Under Our Skin' was released, focusing on Lyme disease.  I saw the film around that time and have forgotten the details, but it appears to be available online, in some sites for a fee, but in others without a fee as it originally was.  I recommend it, especially for your parents to review, because it gives an understanding of Lyme that addresses many issues.  It looks like youtube may still have its 'no-fee' version, but if not, there are others available.  I don't know what the 'fee-required' version would cost to view, but likely not much.  

When I saw the film, I was largely past Lyme, and as I recall I thought some of the scenes were a bit over done, but not terribly so.  If you see something alarming about, for example, a patient's condition, do NOT assume that you will also have that happen to you.  The film was trying, among other things, to show the different manifestations of Lyme, from ill to really ill, to alert people that not everyone with Lyme looks or feels the same even though they all *have* Lyme.  The key is NOT to assume that you will get as bad off as some of the people in the film -- but it may help your family understand that Lyme is a real and serious ailment, but one that is imminently treatable.  I am now quite a few years past treatment, and I am perfectly fine -- no continuing problems at all, and I know others who are also entirely well after appropriate antibiotic treatment.  Let us know how you do!  All good wishes --
Avatar universal
Thank you for your reply, it really helped. I seen my doctor yesterday and he said it could be the reaction to the treatment, or I've contracted a virus as I work around many children and had a rubbish immune system anyway. I have looked into detoxing and think it's something I'm going to need to do. I struggle with my weight as I loose it easily and have to be careful I don't drop too low and this sickness certainly is not helping. I don't know how she can't find anything as they is plenty of info, I think it's more she doesn't want to find anything...

Funnily, my mum is also on the treatment as they were undecided if she had it or not as her rashes did not look like mine however he wanted to be safe. She has not felt anything like I have and just keeps telling me it should be gone and to forget about it. I have sent her links and many things but still she is adamant I'm feeling this way from other things.

I watched that documentary last night and ended it halfway, it was really insightful but wasn't really helping me. I can self certify for a week off and my doctor offered to put me off sick if I feel I need it, however in the enviroment I work in, it is not helpful as I am just catching everything. My normal cold has turned into a chest and sinus infection so I will end up spending too much time off sick and they don't deal with sickness very well.

Looking for a part time job and hopefully brave enough to hand my notice in tomorrow...

I am sorry you didn't find yours till late, I know how lucky I am to have caught mine early and to have an open minded doctor! Thank you again for your reply I will stay in touch.
Avatar universal
I just did a search online for

---   ILADS UK ---

and got some interesting leads.  The UK, like the US, has a significant number of MDs who do not take Lyme seriously, so linking up (or just reading the website) of these Lyme-knowledgeable organization is what I would do.  There are no MDs who believe they know nothing about Lyme, but sadly there are many MDs who DO know *nothing* about Lyme, but think that they do.  It's life through Alice in Wonderland's looking glass -- too much is not as it seems.

Many of those with Lyme disease also have other, separate infections carried by the same ticks that bring Lyme, and it requires a knowledgeable physician to know what to test for based on quite subtle symptoms that are sometimes hard to sort out.    

You say, about your mother that "her rashes did not look like mine however [the physician] wanted to be safe. She has not felt anything like I have and just keeps telling me it should be gone and to forget about it."  I would follow your physician's guide.  There is much misinformation around that holds Lyme and its co-infections to be rare, hard to get, and easy to cure, which sadly is not true.  The good news is that your doctor sounds solid, and that makes up for much.  I too was blessed with such an MD, and he is still high on my List of Wonderful People. ...... On another point, your mother's symptoms and yours may well look and feel different, perhaps because you have different combinations of infections related to Lyme (of which there are several), and also due to differing immune systems for each of us.  If you have the opportunity to go on medical leave for a while, rather than keep on working (esp. since you are ailing otherwise, with the chest and sinus infections), then I would do so.  It takes time for Lyme treatment to take hold, and even after the meds are finished, it can take a bit more time (perhaps several months) to be back up to par, depending how beaten down your body is from having fought the infection(s).  Don't be disheartened, tho, because though the path may seem long, it is *entirely* worthwhile to be healthy again.  Let us know how you do, all right?  Sending you all good wishes -- J.
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