i know i must have lyme but no lyme literate dr.'s and every test is negative.

Infections
1

I am very ill and this post was removed without a reason and my account deactivated. I do not appreciate not being told why this happened,this is no way to treat people on a site who you know can be extremely ill. It took me time to write my post do to being ill and you as a moderator  need to take the time and tell me what rule I broke. I read the link that was atomically given and nothing fit, so I can only hope it was a mistake. If you take the time to tell me I can change it and you do not need to deactivate my account. Thankyou

I have been misdiagnosed for 5 years and my doctors are just starting to figure out its peripheral  neuropathy, which i know lyme can cause.

I have so many symptoms of lyme that no one can explain, I live in an area where its impossible to find a lyme doctor but i did find a regular doctor that will listen. i want to know any info you can give me so i can take it to my doctor, heres whats going on.

I have burning under my skin at different times of the day that happens on the dot. It always gets worse at certain times of the day which i read is classic lyme. 11:00 in the morning is when it would start to worsen. Then its bad by afternoon. It gets better maybe at night when i feel tired at 8:00-9:00pm but worsens a lot at 11:00pm. I have bug crawling sensations (which was my first symptom) which i also heard are classic lyme.

I have mood swings. At the same times everyday i will feel overwhelmed and like i cant handle things, then the next hour everything lifts and all of a sudden i can breath again. It will happen at the same time everyday, 

Also i can feel like theres a roof on my emotions and i just cant feel better, except i will feel better at night, 11:00 at night every time (as in my emotional range feels better) but the burning will get worse. Its strange that i have more emotion when i feel the burning at that time but there you go.. 

I feel that exercise helps sometimes, And i rely on regular exercise.

I regularly feel like im just dying slowly.

I have Food sensitivities beyond measure. Anything that is not a complex carb makes pins and crawling feelings worse to the point its unbearable. I cant even eat rice. I also spent years fighting a fungus with no improvement using natural and non natural medicine, eventually the conclusion was reached that the fungus was not that bad and not causing my problems (and i agree) But i know lyme eats sugar which could account for the sensitivities maybe? These sensitives showed up before the burning but right around or after skin crawling feelings.

I have had a number of lyme tests but they all came back negative. But i had these tests years after i started having symptoms. Is it normal or possible for these tests to be negative even when you have lyme? 

I did find a dr who Thought it was worth a try and gave me doxycycline for 2-3weeks. I felt my ocd get worse, that was about it. I wonder if the ocd is from the antibiotic messing with the small fugal i have or just that i react to literally everything put in my body, but i don't know.

Im just wondering if anyone can share any information they have or experiences so that i can take it to my doctor. I found one who will listen(which is rare) but he is stumped.

Is lyme still sound like its an option here? I had a number of tests and its negative. Is it normal for tests to come back negative years later? Is it normal to take dox and not feel any better? Are my symptoms lyme like? Is this all normal for lyme

2

Hi

are you in us or UK/

Tests often come back negative in uk because it seems we need several different sorts of tests that just aren't being done.

If you are in USA then you may need to travel interstate to get a good Lyme Disease Doctor.

If you are in UK thenI wish you all the luck in the world.

You ask is this all normal Lyme.?

I don;t know.

We are all unique and have different "set point levels" in our bodies so react differently . Some have strong immune systems that can throw off anything. Others cannot.

The burning sensation you have. Is it itchy.

My itching is worse in evening. and less intense in the day. 

Have you had an aching neck and/or shoulders.?

Do you have joint, bone and muscle pain- and I mean pain with a capital P.

Have you had an problems with vision or hearing or balance?

The bug crawling . Doesit feel like something is crawling under the skin and then do you feel a prick/stab as if something had come out and bitten you. Does it leave a tiny red mark that heals up eventually but it itches so much 

this OCD . Have you always had it or has it come since you've been ill?

Is it something that  comes with having Lyme? I don't know but I have it and never had it in my life before.

You will feel low and your emotions will be up and down. How could they not be when you know you are ill and no one will say " Yes, this is what you have and we can/ can't cure it."

Did you have terrible tiredness when you first became ill?

Were you abnormally cold.  Did you have fleeting flu like fevers? Does your head hurt?

Did your hair itch? Did everthing itch?

Is your memory affected at all, or does it affect your thinking.

Do your muscles go into spasm so you can't move your arm or leg.

Do you have any balance problems.

When you eat bread or cakes/ potatoes or  processed food does that make the itching/burning much worse?

I;m just like  you. We are fighting an  unnamed enemy without  weapons.

But your body can fight this or make things easier if you listen  to it and do what it says. Do not eat any carbohydrate at all or overt sugar, No chocolate. Nothing ith sugar in.Most fruits, except lemons, limes and and under ripe  kiiws, are high  in sugar. So eat only lemons. Fill up on fresh green veg, lots of tumeric in curries. garlic is good. and chillies, saurkraut(fermented cabbage). Onions and Organic meat and fish. NO dairyNo alchohol. Try green juices: raw garlic, lemon juice, cabbage(washed 0 firstin salt water and rinsed and pattted dry,  broccoli, leeks, spring onions. onions, geen pepperssalt, peper and tumeric and lime juice.

Have eggs. They are good fried, poached, boiled. Take plenty of salt(unless you have heart trouble)

Foods  play an enormous part as they are the weapons.

If you look on Lyme healing websites there is a wealth of advice..

Take what you can manage.

See what vitamins and herbs help and take those.

If you felt better taking the antibiotic then ask for more.

If your sleep is disturbed ask the doctor for something for that.

Try and remember back  when different symptoms first came and list them. That will help your Doctor  decide what treatment for you.

Exercise is good. get out as much as you can.

Shower.bath once/ twice a day. Use the recommended stuff  antibac and anti fungals.

Others on here are far more experienced than I.

I am just battling things out and living day to day and doing what helps me as  no one  believes I have Lyme. " No Lyme here they say. It's all in your mind."

And get any mould in your home eradicated.

I am beginning to wonder exactly how many faces LYme,  and the co- infections that go with it, has.

Will your Dr send you to the dermatologist for a skin scrape  of one of these sore/ itchy spots?

The type of bacteria that cause Lyme are called sphirocetes  and they are very cunning and hide in the cells so often can't be detected,

Very specific tests, sometimes several , are needed to  to detect all the bacteria .

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They just deleted my post about Gut bacteria and Lyme. Got no idea why so not sure whether to bother reposting

4

Hi,

Dn't worry about it.

They do that sometimes -delete posts., If I remember correctly wsn't it about a programme you had seen/heard.gut bacteria.

And whether anyone had tests for it.

Well i haven't but i haven't had any tests except ordinary blood tests. All come back as fine.

I thought they were doing a Lyme test but heard nothing.

as for gut bacteria tests-

Since most Gp's over here won't recognize Lyme we;re not likely to be offered any  such thing. though maybe some one has had such tests andwill have seen your post.

Are you in uk.?

My OH heard a programme told me about it.

Have a look at posting guidelines and see if there was anything amiss with your post?

 Or you could ask them.

I would think the gut bacteria(the helpful ones) are all messed up in Lyme.