Lyme disease, do you have it?

Crikket · #1 07/21/13, 08:50 PM

A very condensed explanation...Years ago I found a deer tick on my arm, I promptly pulled it off and killed it. It left quite a large red area that stayed for a couple of months. It wasn't long after I found the tick that I started dealing with extreme fatigue, aches and tired muscles. It occurred to me that it may be lyme, so I made an appt and got tested for it, it came back inconclusive, but I pretty much knew I had it, especially after reading about the inaccuracy of those tests. They wouldn't treat me for it, of course. I put it out of my mind, ignoring the signs, what could i do about it anyway...? I went to see a new Dr this past August and he confirmed that I did in fact have lyme disease. (I hadn't told him that I thought I did, or actually any of my history at all.) I am fighting just to get through a simple day of laundry and generally picking up the house. Simple things that other people do with no problem take me days to recover from. I get overwhelmed physically so easily that it's embarrassing! I really have to be careful to not have too many things going on at once or I will physically "crash". My knees hurt, sometimes so badly that I cannot walk. I don't know how to keep a house running smoothly any more, I cannot keep up these days! And I don't know how to be ok with my inability to do my job as wife, mother & home-keeper. I always feel like I'm on the verge of collapsing from exhaustion! How do you do it? How do you deal with it? Please share what you do to help yourself cope. I need to know how other people live with lyme disease. What can I expect down the road? And the guilt, I hate the guilt I feel.

Ravenlost · #2 07/21/13, 09:38 PM

Sadly, I live with it in much the same way you do. I can't do anything. My doctor believes I first caught it when I was living in VA back in the mid to late 90s. I think he's right because I became very ill back then. My knees and legs hurt so bad I can remember crawling up the stairs to bed at night with tears running down my cheeks. I didn't have insurance, wasn't making enough money to make ends meet, so didn't go to a doctor.

Fast forward to a few years ago (inbetween which I had been diagnosed with Fibromyalgia, MS, arthritis, rosacea and a host of other ailments...put on Doxycycline for several years to treat the rosacea) and I broke out in the bullseye rash. Was having terrible bouts of insomnia, headaches and the horrible aching knee and leg pain. Went to the doctor and he said the tests weren't necessary...I definitely had Lyme Disease. We believe the Doxycycline kept it in remission. When I stopped taking it for the rosacea (my dermatologist was worried about me being on a strong antibiotic for years on end) the Lyme flared up again.

MRI shows lesions on my brain that was once believed to be symptoms of MS. Now we know it's Lyme. My husband and family don't understand. They think I look healthy so I must just be a whiner...lazy...etc. If they only knew how much I hate not being able to do normal daily things...how much it hurts to have them think those things about me and how depressing it can all be.

I suggest you search online and see if you can find what is known as a "lyme literate" doctor in your area. They are few and far between. Also, see if your family doctor will give you a 30 day course of Doxycycline and buy some Tincturn of Teasel to take.

Most of all...go easy on yourself. You have nothing to feel guilty about. You're ill and it isn't your fault.

calliemoonbeam · #3 07/21/13, 11:39 PM

My story is very similar to Ravenlost's, only I didn't get Lyme until 2010, but on top of all my other problems it was a nightmare. Then I got it again in 2011! However, my doctor started treating me with doxycycline right away instead of waiting for the tests to come back. I didn't get it last year and (knock on wood) hope I don't get it this year!

Most doctors do treat proactively if they think it's Lyme because the longer it goes untreated the worse the residual symptoms are and the more likely you are to have them for life. I'm sorry your doctor didn't treat you right away.

Like RL said, in some ways the worst part is your own family and friends thinking you're just slacking or lazy. They have no clue what it's like for you, living with this all day every day. Like she said, you look okay, so they think you should be able to do everything you used to.

Someone here on HT (sorry, I forget who) posted this article about "The Spoon Theory". It was written by a woman with lupus, but I think it's the most accurate description that anyone with a connective tissue type disease can use to explain it to healthy people. It really resonated with me, and hopefully it will help you too.

http://www.butyoudontlooksick.com/wp...-spoon-theory/

Another good article is this one "30 Things About My Invisible Illness You May Not Know"

http://www.butyoudontlooksick.com/wp...ine/30_things/

You have to learn to learn your limits and pace yourself, learn to work smarter, not harder and most of all allow yourself to say NO when you know something is going to be too much for you. If you push too hard today, you may pay for it for a week and not be able to do anything. You may have to make decisions to give up certain activities or chores, and that's really hard. You may have to get used to your house not being as clean as you like, unless you have family who can pitch in. Everyone is different, and only you can decide what's best for you.

One of the best things you can do is try to maintain a daily routine of gentle stretches or isometric exercise (not aerobic or weights!) even on your bad days, if possible. Just 20-30 minutes will really help work out the kinks and help ease the pain. I know it sounds contradictory, but actually sitting around and getting no activity makes it worse, not better, any doctor will tell you that. Deep breathing, meditation and distraction techniques help too.

I work 40+ hours a week and am trying to homestead on my own, so believe me I know what you're going through. Most of us were previously strong, very active people and took care of everyone around us. You have to change your whole way of thinking and learn to take care of you first because if you don't you won't be any good to anyone else either. Sorry this is so long, but I hope it helps. We actually have a section called "But you don't look sick" on the alternative health board, but most of us are too busy to post there much, lol. Hang in there! {{{hugs}}}

SFM in KY · #4 07/22/13, 06:00 AM

I had it but fortunately I had a 'classic' case ... had the classic bullseye rash from the start, severe joint and muscle pain at the same time ... and was diagnosed within just a few days (by my vet!). Was put on doxycycline immediately and kept on it for a full month after all symptoms disappeared ... can't remember now whether it was 2 1/2 months or a full three months.

A week on the antibiotic and the pain lessened. I never did have the lethargy that others have, fortunately, my only symptoms were the rash and the very severe joint pain ... also odd in that the rash was on just one side of my upper body (chest/shoulder, front and back) and all of the pain was on that side as well.

That was 18 months ago and thank goodness I have had no recurrence of it at least so far.

DamnearaFarm · #5 07/22/13, 08:11 AM

Not lyme here, but fibro. Good advice given by all three ladies that have posted. Especially read the links and heed what your body tells you- this is something you can't just push through.
<<<gentle hugs>>>>

MichaelZ · #6 07/22/13, 08:22 AM

This summer I had a deer tick bite with the start of infection and they gave me the antibiotics without even testing. I am guessing they do this because there have been lawsuits won by people such as yourself that must live with the life-long debilitating effects of untreated Lymes. I am not one for lawsuits but you might consider this route - get your medical records from years back first.

If you won the case at least you could afford to hire someone to help out once in a while.

Crikket · #7 07/22/13, 09:50 AM

WoW! It really helps to hear that other people deal with the same thing! I'm not crazy..lol!! Thank you so much for sharing! And I agree that one of the hardest things is friends and family not understanding. That just tears me up! I'm waiting to get in to see a holistic Dr, the wait is quite long, but I think it's worth a try. Also looking for a lyme literate Dr, like Raven suggested! Thank you!

Ravenlost · #8 07/22/13, 09:57 AM

You're welcome. I hope you have luck finding one!

beaglady · #9 07/22/13, 10:47 AM

Last August, I ended up going to the Dr. with stiff, swollen joints and extreme tiredness. Got a blood test, which was positive, and after much disorganization on the part of the Dr's office, eventually got a prescription for 2 weeks of Doxy.

Around December, I was feeling bad again and changed Drs at his point, ended up with a second course of Doxy, this time for a month. Tested positive again in the spring and am on a 3 month minimum course of a higher dose of doxy right now. So far, I feel pretty good, and have a follow up visit in a couple weeks. The new Dr. isn't officially Lyme literate, but he did attend a conference for LLMD's recently at my request, and is open minded about alternative treatments.

I never had the bulls eye rash, and don't remember having a tick bite, though my dogs sleep with us, so it's now mystery how I could have gotten bitten. Ticks are really bad here in PA, and I've had 4 dogs with Lyme, despite Frontline use. This year, I have them using those expensive Seresto collars, and still occasionally find ticks on them.

JoePa · #10 07/22/13, 02:08 PM

My daughter is being treated for Lyme right now - a few weeks ago her right ankle and right knee got swollen and she couldn't put any weight on her right foot - got some blood work done and it showed positive for Lyme - this is the second time that she had a positive test - a couple years ago she tested positive and was given Doxycycline for 2 weeks - I don't know if she got rid of the disease at that time and got bit again or if she was never really cured -

Well anyway she is now taking Doxycycline again - has enough pills for a month's treatment - her swelling went down because the doctor prescribed stiroids - she is off of the stiroids now and I'm watching if her leg swells up again - if it does the doctor said that he will prescribe another antibiotic to be given intravenously -what gets me is that a lot of doctors are not up on Lyme disease and patients are suffering because of it - I think the best thing to do is get tested each year and hope that the test is correct -

romysbaskets · #11 07/22/13, 02:29 PM

I got to know a sweet young man, about 19 year ago, living with the worst stages of Lyme disease. Rory was misdiagnosed and never treated for it. They did not even test him til he was in a wheel chair. Anyone with Lyme needs immediate treatment, running to a doctor is pronto. Get a print out of Lyme disease affects and hand it to anyone who is not understanding of how serious and debilitating it is to suffer with. I have been bitten by spiders, ticks and such many times but never had Lymes... I have always been attentive after seeing that young mans pain and permanent disability! With proper treatment in time, it did not have to be that way! There is no exaggeration on the affects, it wears a person completely out, you can have issues walking and all the side affects mentioned here are so accurate! I am very sorry to hear about your getting it and not getting immediate treatment...I hope your treatment is effective completely and take good care of yourself...hugs!

Ravenlost · #12 07/22/13, 02:42 PM

JoePa, she was never cured and it is very possible she never will be. Two weeks of Doxycycline is a joke. Thirty days is enough to put Lyme in remission, but it isn't a cure. I was on Doxycycline for over TWO years and as soon as I went off it I had a relapse.

Do some research...Lyme is more widespread than the "officials" let on...tests are highly inaccurate and treatment with Doxycycline isn't a cure.

beaglady · #13 07/22/13, 02:44 PM

Quote:

Originally Posted by JoePa

My daughter ... got some blood work done and it showed positive for Lyme - this is the second time that she had a positive test - a couple years ago she tested positive and was given Doxycycline for 2 weeks - I don't know if she got rid of the disease at that time and got bit again or if she was never really cured -

Well anyway she is now taking Doxycycline again - has enough pills for a month's treatment - her swelling went down because the doctor prescribed stiroids - -

Generally, I didn't think steroids were recommended for use with lyme, because they suppress the immune system. http://www.truthaboutlymedisease.com....php?f=10&t=14

Forme what I've read, and based on my own experience, 2 weeks of doxy isn't enough, so she is probably having a relapse, rather than this being a new case. Scary.

JoePa · #14 07/22/13, 06:09 PM

What are we saying - that's once you get Lyme Disease you will always have it - there isn't any way of riding you of the bacteria that causes it - man - I hope there is a cure -

Crikket · #15 07/22/13, 08:29 PM

From what I've read, if you don't get treated within a certain time frame of being bitten, you will always have it. Altho' some people don't have as drastic symptoms, others have periods of feeling fine, and still others have to deal with extreme symptoms daily. This is just what I've gathered from all the reading I've been trying to do, but it gets a bit overwhelming and I have to walk away sometimes...lol! Just seems like there isn't a lot of help or even acknowledgement of the disease. Very sad to hear of everyone that has to deal with this. Also very interesting to hear everyone tell their story. Very good to hear from others who I can relate to. Thank you!

wannabechef · #16 07/22/13, 08:32 PM

Dont have it, but I know what treats it...if you think you have it and want to treat yourself you can. http://www.calvetsupply.com/category/Oral_Antibiotics

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JoePa · #17 07/23/13, 09:07 AM

Treat yourself - boy - I don't know - I don't think I would start using something that hasn't been tested for use in humans and for a specific disease - no thanks anyway - sent from my labtop located on the kitchen table while eating breadfast -

wannabechef · #18 07/23/13, 02:00 PM

Quote:

Originally Posted by JoePa

Treat yourself - boy - I don't know - I don't think I would start using something that hasn't been tested for use in humans and for a specific disease - no thanks anyway - sent from my labtop located on the kitchen table while eating breadfast -

Its amoxicillin. Pharma grade. I keep a bottle of 100 500mg here for anything the requires antibiotics. If its safe for fish, its most definitely safe for humans.

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beaglady · #19 07/23/13, 02:54 PM

Quote:

Originally Posted by wannabechef

Its amoxicillin.

Amoxicillin is not the first recommended antibiotic for lyme disease, though. Doxycycline is. They work differently, so each is better for different kinds of infections. Amox IS used more often for children with lyme. http://www.wisegeek.com/what-is-the-...moxicillin.htm

There seems to be a shortage of the veterinary doxycycline. If you scroll down the page in the link wannabechef posted, you'll see that the doxy is now available only as packets of powder, not capsules, and that they're fairly expensive.

That being said, given the choice between no meds and veterinary antibiotics, I'd use them.

paradox · #20 07/23/13, 03:51 PM

Don't know about the powder packets of doxy since it is harder to compare those but... here is what I have gotten from a bit of research and a few admissions from doctors and pharmacists.

By law a (US) manufacturer cannot make two pills that are identical in markings, color, and size without the ingredients and quality control standards also being identical. So if the pills in the bottle of Amoxcillin from a vet supply are identical to the ones the doc gave your kid last week from CVS, it is indeed the same quality only without a prescription. So you can use vet meds if you are careful in what you are buying and do a little studying on the subject. Just do your homework first. Look for pill identifiers on the web and then make sure color, size, and markings are identical before you take it. Also I would not do it unless you are positive of the diagnosis and know exactly what med and dosage size the doctor would give for it.