Could this be Lymes?

Infections
1

Hi all,

About a month ago I had a red mark on my back the size of a coin and my doctor gave me antibiotics for an infected cyst, something I've never had before. It was sore to touch and very itchy. That's cleared now but since then I've not been feeling ver well. My neck aches when I turn to the right with some stiffness and shoulder ache. I'm also getting a dull ache between shoulder blades. Sometimes get headaches and momentary nausea. Sometimes also shortness of breath but I am an anxious person in any case. I think my eyes and ears are affected too. Also tire easily. I have 2 cats who have had fleas recently and I walk a friends dog in fields nearby. I am wondering whether I gave got Lymes disease. Can anyone advise please. I am going back to doctor next week and depending on what reply/replies I get here may mention Lymes disease to him. Thanks everyone.

2

......also getting some lightheadedness/giddiness, thanks.

3

Hi Juliannah,

It sounds something other than a cyst.

Ask the Dr why he gave you antibiotic for an infected cyst? 

What did he give you and for how long?

The tiredness, achey neck/shoulders are ringing alarm bells. (between the shoulder blades-- I too have this but also now in shoulder, elbow wrist too)

What is matter with eyes and ears? Are they itchy? Are your eyes seeing floaters or wriggly things. Are you having double vision ?

Headaches and sometimes nausea. -have you only been having these since the cyst came.?

I had a stye /cyst on my eye. hadn't had one for many years and this one just hung on and wouldn't go away. After that all the other things started .

Does your head itch

Are there any other sore or itchy spots.

Can you remember and ssort of other      thing? like a bite or a rash?

When you go back to Dr just say you have n't been well and list the symptoms.

See what he says. he might order blood tests.

Lyme-- certainly sounds as if it could be. 

A lyme test now would probably come back negative.

As for being anxious. Most of us are over anxious.

Treat the cat fleas and  check no fleas in house etc..

Let him/her be the first to mention Lyme.

Ash him what is wrong with you.

let him do whatever tests he thinks but ask him for another 3 weeks of antibiotics.

From now on write down anything that happens- where the pains/ache/itch  is and anything new.

Note how your sleep is.You may be worrying unnecessarily  but on the other hand it is best to be safe by taking the antibiotic for 4 weeks altogether.

When you are out walking keep covered up- long trousers and long slleved top and check for tick bites,

If caught and treated now and it is Lyme then you can be cured.

Lyme makes you even more anxious.

 I  wish you well.

 

4

Hi Marie,

Thanks for replying. The doctor gave me flucloxacillun 500mg 4 x day for 7 days but I only took for 5 days because I had bad headaches. They did clear the infected cyst though. Ears feel a bit blocked and tickling inside. Also heavy headed feeling. Eyes feel dry, wear contact lenses but have to take them out earlier than usual. Floaters occasionally but not at moment. Itchy scalp and back. No double vision. I get migraines anyway but these headaches are more like tension headaches.

Cats taken to vet today and have had treatment for fleas.

I'm taking it that you have Lymes disease. Do my symptoms sound similar to yours. Could I have picked it up from cats?

Thanks for replying.

5

Juliannah,

I don't know whether you have Lyme or not but it sounds like it.

There are so many different symptoms that come and go and some seem to stay. Among them areItchy ears, that  feel blocked.( I have had this for about 9 months now.) Also itchy eyebrows and itchy eyes,  and you may also find that you have to turn TV up and down  as sound levels vary.

Now there are all sorts of things yours might be. and I am no Doctor but if things don't improve then I would suggest you ask your Dr for 4 weeks of Doxycycline.

The headaches  rae not migraines. I had migraines for most of my life but not for last 25 years  aand then these headaches came.

 Do you get a sort of tightening in your hed and then a pain at the back or to one side of head. Yes like tension headaches,

You might find you get spasms in your muscles that are painful enough for you to go to A and E. Wrap a warm towel round and take a painkiller  and iut should ease.

Are bowels  different from usual?

Do you want to sleep a lot? Do you lack energy? Are you having

sudden car sickness when you haven't been car sick for years or  do you havesickness with little wraning?

I believe I have Lyme but no one else does.

I have been unwell for two years now and possibly before that.

Have you ever had acupuncture>

If so it helps.

Do you have very cold legs or arms. icy cold when the other bits of you are warm?

Cats and fleas. There could well be a link. 

Mites on cats can casuse Lyme as can mites on mice.(According to USA research).

If you have pet insurance get vet   to test cats for Lyme.and co infections. Ask vet to check for mites on cat. he can do a skin scrape.

Chicken and bird mites can also carry Lyme.

Dogs and cats get it but  get over it if they are generally fit and well.

The symptoms you have given sound like those I had.have.

My Lyme test came back negaive. (most in UK do)

According to GP I do not have Lyme just depression..

Since you got thsi recently the antibiotic shold cure you but it seems you must have it for 4 weeks. and at least 400 gr daily.

I am just wondering if your Dr suspects Lyme.

 

When i can afford it I will have the test from Germany.

re itchy scalp and back. I still have them. I used Sulphur shampoo for the scalp and it has eased but still itches at night mostly.

I also had terrible itch in other places that kept me awake all night for months. That has eased and when it comes I just use Sudocrem as it helps and is cheap.

IF you get this terrible itch it is NOT scabies so don't waste money on scabies treatments as none work.

Aches in joints muscles and bones.

If these start then  go back to Dr.

Have you cough, a dry mouth or sore throat? Do your teeth ache?

does your nose run even though you havent a cold?

Try not to be anxious or stressed.

You are one of the lucky ones as yours is being treated early.

Eat healthily and you should be well again soon.

 

6

Thank you so much Marie for all the valuable information. I'm so sorry you are going through this awful illness. I have a lot of the symptoms you describe, ones I had forgotten to mention.

I can put up with aches and pains but feeling giddy and generally unwell has stopped me in my tracks. I haven't driven my car for a few weeks and avoid going places. I only do what I have to. I always do housework though, I just rest in between. I seem to be losing my confidence though, I'm afraid to go out alone.

I'm wondering if the cyst I had was in fact a tick bite since all of my symptoms stemmed from that. When I went to my doctor about my neck I didn't associate the two things.

I will be going back to my doctor next week and hopefully he can make sense of all of this.

Thank you so much for taking the time to reply to me, much appreciated.

Take care

J

7

Hi, Juliannah. So sorry. This does sound like classic Lyme/Borrelia/Babesia/Babeosis. Any swollen lymph nodes in your neck or anywhere else? Any nite sweats? I'd recommend further testing (which may come back negative despite you having disease) & research credible Lyme docs in your area. Ilads is a site that can recommend them. The sooner you treat this, the better. Am particularly concerned with your neck pain. Your PCM/GP may just dismiss Lyme all together. That is common but your symptoms are real, valid & not 'in your head.' Did your doc by chance swab the bite to send to pathology. My unseen tick gave me MRSA & a bunch of other unfun stuff. Did the doc give you doxycycline for a minimum of 4 weeks? That is crucial. Be well & keep us posted.

8

Just read Marie's comments & she is spot on!!

My PCM was clueless. I had miserable rashes & hives. He said it was scabies, too. Of course, it wasn't. I had ridiculously itchy eyes & incorrectly assumed it was more allergies (i am allergic to everything but gluten now & stay away from sugar.)that came on all of the sudden, affecting my bowels. Probiotic & vitamin supplements have helped immensly as i have malabsorption as well. The itchy eyes were a double corneal infection.

I, too, have difficulty leaving the house sometimes bc talking to neighbors exhausts me & my balance is poor & i find it embarrassing. I thought i was just clumsy! When i'm in the house or outside i am really sensitive to light & sound & the proximity of people toward me.

I am a lot better thanks to lyme doctors in DC. It just takes a long time. I take oral meds 2 weeks on & 2 weeks off right now. It's like chemo & sucks but necessary.

You WILL be ok. Do not be scared as stress is one of your biggrst enemies. I am so sorry both you & marie are suffering. There are at least 300,000 of us across the globe. Others have received fibromyalgia, MS, Lupus & even dimentia as a diagnosis when in fact, they have Lyme.

Remember this too shall pass.

9

I find your input very helpful cap.

The swollen gland interests me. 

I had a large lump come up betwwen shoulder blade and neck about size of a quail egg. Soft to touch  and knew it wasn't cancer-= thought I would get GP to look at it one day( had forgotten about lymph node being there) but didn't  get to see him.

One day I pressed it very hard and it disappeared.

Thought littl eof it but then the tiredness started and I stayed in bed for months. Was so cold  too amd night sweats and strange nightmares. The arthritis became much worse. 

The neck pain doesn't seem to ease and the shoulder pain makes make sthe wheelchair hard to guide as can't use that arm.

Phsychiatrist said we imagine lumps and things and its just depression.

Here in UK one is lucky if one has  a Gp who has heard of Lyme or seen a case..

No one helped me so I had to get myself well as could not go on living the way I was.

We forget all the various odd things that we have with this disease

Dermatologists seem ignorant about it too. They do not do skin scrapes.

 

10

Juliannah,

I'm glad it helped.

We forget .all these little things as time passes but they all add to the picture.

Do you wake with a dry mouth that you've never had before?

The aches get worse if left untreated so take cap's advice and ask Dr for Doxyccline. 

The dizziness and balance lead to falls.

Have you noticed any little rounsish bruises hat appear on legs etc without any cause? 

Maybe have an eye test,

You are not imagining it as it's real.

Hopefully  the 4 weeks Doxy will cure you, It will get rid of the bacteria causing it. So it was good you saw the DR. straight away.

Yes the cyst sounds to me like the bite.

.

Tummy.

This bacteria affects the digestive system.

So any small things that seem unconnected are all part of the same thing. 

Keep your immune system in good shape. Plenty vit C. and  green veg.

Only do what you can in way of exerting yourself. 

The body knows what to do. If you are tired then rest. Sleep when you can. Find easier ways of doing things.

Maybe see the optician and get eyes checked.. 

These bacteria thrive on sugar. so cut it out  if you can.

I hope all goes well.

Oh and I am 60% better than a year ago.

 

11

Thank you capi for your reassuring words. I will see my doctor on Monday and will keep you both informed. I'm so sorry you and Marie are suffering from this dreadful illness. I too thought about fibromyalgia, costochondritis and cervical spondylisis. All seem to fit the bill but the cyst I had made me think it could be Lymes. I really hope it is not but not sure now whether I will ever find out for certain. I will ask for those antibiotics though.

Best wishes to you both

Take care

J

12

Juiannah,

Depending on what happens after your next visit to GP  and if Lyme Disease should be mentioned then ask him if you can have a Lyme Disease test done in a months time or so.

Before then there may not yet be antigens but after that they should show.

If it comes back negative, as so many do even if a person actually has Lyme then there's a firm in Germany that arranges for your blood sample to be fed ex to their laboratory in Germany.

This costs about 400 or so depending on what co infections you have asked to be tested for. It is not complicated as they send all the info, what to do etc, in downloads.

At least then you will have the poisitive diagnosis.

But hopefully you will be well by then.

Cap mentioned gluten free diet and probiotics. Gluten free is helpful and dairy free and carb free too. Probiotis etc are needed to put enough good bacteria in to  restore proper function.

If you have any iritable bowel symptons these will ease as your health returns.

I love potatoestoes , cooked every way and found not having them  hard but am sure it helped.

I read in a USA article that post mortems done on Fibromyalgic pateints showed the same bacteria as in those with Lyme.

It is just possible that in many cases Fybromyalgia  was in fact Lyme. They found same bacteria in Alzheimer  pm's.

When you are doing something , cooking, cleaning and feel that odd feeling that you are going to pass out then just sit and rest until it passes.

If after your full dosage of Doxy you still feel unwell then don't get disheartened as that prevents you healing. IT takes time to kill all the bacteria off.

You have to be patient with time  and keep your spirits up.

Do what you can that makes you happy and  keep believing that you will soon be well.

Have Epsom salt baths. These provide the magnesium the body needs. Add essential oils.

Only those who have this can understand what it's like so if you have supportive, but disbelieving, folk around you then  just accept it.. Don't expect them to know how you are feeling.

It does not matter if you are believed or not. The only thing that matters is to  believe in yourself and your inner strength and  you will get well one day.

 

13

Ah, the wheelchair. Bummer Have escaped it thus far as my cousin subcumbed to Lyme before me. She is in a wheelchair, but only off & on now as she is getting better & you will too The only reason i didn't get as far gone, is because when i hit 105 lbs., doctors were scratching their heads, while my cousin had me get the labs completed. Thus, i began my Lyme journey. Those spirochetes ate up so much muscle! I completely believe the post-mortem reports. SO many people have Lyme & don't know it be well, sweet marie!

14

Have GP run bloodwork to check your Vitamin D levels. Forgot to mention that.

15

Thanks Cap,

The wheelchair helps a lot

What do you Take to lessen the pain? Nothing seems to ease it.

What is a PCM?

 

16

Hi!

PCM=Primary Care Manager (i.e. a health gate keeper in the US). Excellent question.

I have yet to use opioids. Want to avoid that. You are right. Nothing eases the pain. It is like being in a storm & having to ride it out. Last week i had excruciating pain up the back of my neck to the back of my head to the top of my head ending above my eyes. Lasted 48 hrs. & then just stopped.

Neurontin has helped a lot with lessening the head pain frequency tho but even when doc ups the dose, it is no help on days like last week. She has given me medical marijuana for nausea & it dose help the pain somewhat but it has its own side effects like i have trouble swallowing, makes me very thirsty.

Gosh, i hope we get better. My cousin knows others who were stricken as badly as you & she. They are cured & living normal lives.

Today was much better than the last 3 weeks. I just go day to day. Am flexible with my schedule & try not to plan anything bc i get super anxious about how i might feel that day. Truly live moment to moment, i guess...

17

Thank you cap,

You are such a help

I couldn't understand why nothing seemed to get rid of the pain.

Your PCM is like our GP here in UK. 

But if GP  doesn't believe you then you  just have to go it alone(with help of others in same situation) or  if you have money you can be treated privately.

I have little time left to beat this thing but just coulldn't cope with being as I was.

The last 6 months have been so difficult. The 6 months before that I just slept most of the day and all night. Now I seem on a plateau- the days are bearable but I just want to be rid of it and the fear of passing it on.

One finds ways of coping- Bathing is too hard so I bath two days a week and just wash the other days. Cheaper lotions and creams seem to work as well as more expensive ones.

Thirst is a problem. Nothing seems to quench it .The vit pills have to be tiny to swallow them.

But looking back I am in a different place now. as I hope you are too.

I think as the tears and hopelessness  lessen so the body gets on with trying to heal itself.

You are so right. We have to live in the moment.

18

Hey, Marie :-)

Thirst? I went thru that too. Frozen popsicles help. I would devour them tho but it ran its course. Fast & get your blood sugar tested just to be on the safe side, k? Oh, how is your adrenal gland function? That is a simple, take home from the lab, timed saliva swab test.

So there are no Lyme Docs in your area? We really need to rally & rattle the cages so that we all can receive proper treatment covered by insurance. It seems only the rich recover. There has to be & **will** be another path. We are just the minute to minute groundbreaking warriors!

Completely understand bathing. Am too weak usually to stand in the shower so i just use the tub for every thing probably 2x a week. My cousin& i have both said we despise hair washing day bc we never have the energy to properly dry & style it. I cut it all off awhile back bc my scalp felt like a cactus was being shoved upon it but have been growing it back out since.

I did get a coarse bristle dry bathing brush. Start with your feet. You brush upwards toward your heart. Not only does it remove the dead skin toxins, it does something else good but my brain is fogging up. Oh, it lets the epsom salts in better. Today i have been shakey but still felt detached from my body.

19

Thanks Cap for all the advice.

They won;t test for anything as according to them all I've got is depression.

Saliva swab test? I doubt they'd do one.  but will aski if  I go again.

Can't do the shower and bath is too painful and Sometimes struggle for an hour or more trying to get out. Too narrow for a bath lift tting.

So I was greatly relieved that you don't think daily bath js a must..

Stopped using the sulpur sampoo and hair is less itcy.

Hair wasing so tiring . Just do it twice weekly. Will get daugter to cut it all very short  when she comes this week.

People wit tihs can only do what their energy leves or  physical condition lets them. It's a question of acceptance. Will dry the dry brushing.

FRozen popsicles a good ides.

Also found a lemon juice drink witout sugar.

How did your cousin get it? From you? or from a tick bite

There are Lyme Drs  

No one has Lyme in my Doctor's practice.(Wonder if any have been tested and did they come back as negative too?) Maybe I will ask?

There are lots of fybromyalgia cases and dozens with severe arthritis 

 

20

Hi all,

I saw doctor today, dismissed Lymes. Had bloods taken, neck and back xray, results next week. Gave me medication for dizziness.

Hope you are all coping ok.

Best wishes

J