I have been in treatment for a year now, as well as both of my children, ages 16 & 18. They both contracted congenital lyme. I was most likely infected when I was 3 years old. I am now 41.

I don't know if it's the weather or what, but today I just need to vent, I guess. We are all on oral abx. ( my kids - BiaxinXL & Plaquenil, me - BiaxinXL, Plaquenil & Flagyl. Along with Probiotics, Milk Thistle, Mag. & Nystatin.

I feel so guilty because I have practically zero energy. On top of that I feel like I'm an 80 year old arthritic woman! Some place on my body hurts every day.

Some well meaning friends/family say maybe it would help if I and my children got more active (push ourselves more) we would feel better. Believe me I try to do that (so do my kids) only to pay for it later.

Another thing we deal with is our sleeping/or lack thereof. Evenings seem to be better for us, but then we can't sleep at night because of the pain.

But once we get to sleep, we could sleep for 10-12 hrs.
Anyone else have this problem? I feel like our sleep "clocks" are set wrong. Like when they say a baby gets their days and nights mixed up?

My daughter and I have more of a problem with this than my son.

All of you "long termers" out there, do you have similar situations - How long were you in treatment that you experienced noticeable improvement with sleep, pain especially?

Am I expecting too much too soon, if so, I can handle that, or am I just being a "wimp"?

I feel bad some days when my husband gets home form work, I'm still in my pj's. It makes me feel pretty worthless, even though I know that's not true.

My kids are homeschooled, so we're all at home. They would have missed so much school if they actually went somewhere.

My daughter is going to have a laporoscopy(sp?) surgery done on Monday, because they suspect endometriosis. I also had endometriosis that I had surgery for when I was younger.

Is what I'm feeling normal? How do you deal with all the people in your life who look at you like you are from another planet when you try to explain to them about lyme and how you feel??

I wish that I could "will" myself to get better, every night I go to bed thinking about what needs done in the house. And how I wish I could get my body to agree with my mind! It just won't listen!

It's been a year since starting treatment, and I realize it could be years more. ( my LLMD says I/we may have to be on a maintenance dose for the rest of our lives.)

But we have to get to that point first. I had Bell' Palsy and left sided body weakness when I started treatment. The Bell's Palsy has improved to the point that no one can see it in my face anymore.

As Background I never did have a tremndous amount of energy all my life ( now I know why), but I really would like to know what it feels like to be somewhat normal.

In my life I have had :

tonsilitis more times than I want to count, been diagnosed with arthritis in different joints - only to disappear and go to another joint,

mono when I was 16 - which then attacked my liver and I got hepatitis (thought I was going to die),

endometriosis, mytral valve prolapse, osteomyalgia - lose of bone density - broke my collar bone once when I rolled over in my sleep!,

fibromaylgia, chronic sinusitis, bronchitis, Bell's Palsy, migraines, chronic neck and upper back pain,

Doctor suspected herniated/slipped discs in lower back, toxemia with both pregnancies, and these are all the things that I remember, there is probably more.

All these before my Lyme diagnosis with the final one being "It's all in your head syndrome"

So, I know we are on the right track. Any one elses' experience similar? Did/does it take a long time for improvement - mind you I don't expect an overnight change - do you go through long stretches of kinda staying the same?

Sometimes I feel like I'm having one continuous herx, but then once a month its REALLY bad.

Sorry for being so long and drawn out with this, but thanks for listening and sticking with this long post if you made it this far.

I know I have had lyme since 16 (at least), suspect I may have been born with it.

I only got dx'd last year and the time I was on abx, I saw much improvement.

Before getting really sick, and finding out what I had, a low carb diet was extremly helpful in gaining energy and reducing pain, not to mention serious weight loss.

I wonder if you are getting the proper nutrients as lyme steals so much. I just recently changed my mulit to living multi by garden of life and with the primal defense I feel better.

Ever since I started taking a lot of herbs for the liver, I have seen major increase in energy, it was amazing. Milk thistle would be one the others I got were from a doctor. I was taking 8 milk thistle a day (divided doses) not including the other herbs for the liver and I saw a HUGE improvement in energy and it hasn't weaned much since even though I am off right now.

So I am wondering if something like this could be happening, or maybe the drug isn't working anymore. Only you would know that - whether you are herxing or not.

Hope you find some answers soon.

quote:

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Originally posted by lymiecanuck:
Hi,

Before getting really sick, and finding out what I had, a low carb diet was extremly helpful in gaining energy and reducing pain, not to mention serious weight loss.

I wonder if you are getting the proper nutrients as lyme steals so much. I just recently changed my mulit to living multi by garden of life and with the primal defense I feel better.

Ever since I started taking a lot of herbs for the liver, I have seen major increase in energy, it was amazing. Milk thistle would be one the others I got were from a doctor. I was taking 8 milk thistle a day (divided doses) not including the other herbs for the liver and I saw a HUGE improvement in energy and it hasn't weaned much since even though I am off right now.

Lymiecanuck

---

Thanks for your response, it gives me some things to think about.

You mentioned garden of life, isn't that something that is mentioned in the book, "The Maker's Diet"? I just recently got the book and just started reading it.

It is very interesting reading, and I am going to try to follow the diet. I also was on the Atkins before I found out I had Lyme. It did seem to help with the energy.

I think I better "beef" up on the Milk Thistle - haven't been as dilligent as I should be.

Thanks

Milk thistle is very important especially while on abx. I am off now only cause I just spent $350.00 on garden of life products and need some more money.

I have been taking primal defense off/on for some time now and always feel better while on it, as I have lots of gi troubles and have seen improvement on this. The multi has recently given me some of my colour back, as I was looking like casper's cousin, and looking too thin. The dosage is up to 9 a day.

I just read your post and yes I made it all the way thru b/c I felt like I was reading my life story. I want to share with you that after 2 years of anti I am better. Not completley and never will be. I am disabled and used to be a nurse. I went thru the times that you are currently going thru with the lyme fog and the no energy and all the symptoms that you mentioned. After 2 yrs of anti I said to the LLMD I have had enough and wanted to give my body a break. He and I felt that I was doing pretty good at that point but like I said before that I was in the same shape you are now. I am also curious I live in Western PA now but grew up in Eastern PA where the Docs think I was bit about 15 yrs ago. Where are you in Eastern PA? I too went undiagnosed and was told everything under the sun. It's a very frustrating disease and it's so hard when family say things like maybe you should get out more and do something today... when all you really feel like doing is falling alseep or just try to put dinner together which at one point was hard for me also. They have no way of actually knowing how you are feeling and I just try and remember that. I even had an uncle who thought it was all in my head and wouldn't even accept the LD diagnosis. It hurts don't get me wrong but you do go on.
I am also curious about how you found out that your children also have LD. I am worried about mine who are 5 and 12 y/o. Their dr. tested with the Elisa test and it was neg. so I was told not to worry about it. Did your LLMD test your children??

I hope if anything this email helped to let you know that you are not alone.

Hang in there. And good luck to your daughter with her upcoming surgery. I also had that surgery to remove ovarian cysts which they think is also lyme related. Maybe it won't be endometriosis. Best of luck.

lynne

quote:

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Originally posted by lynnic86:
Artn soul:

I am also curious I live in Western PA now but grew up in Eastern PA where the Docs think I was bit about 15 yrs ago. Where are you in Eastern PA?
I too went undiagnosed and was told everything under the sun. It's a very frustrating disease and it's so hard when family say things like maybe you should get out more and do something today... when all you really feel like doing is falling alseep or just try to put dinner together which at one point was hard for me also. They have no way of actually knowing how you are feeling and I just try and remember that. I even had an uncle who thought it was all in my head and wouldn't even accept the LD diagnosis. It hurts don't get me wrong but you do go on.
I am also curious about how you found out that your children also have LD. I am worried about mine who are 5 and 12 y/o. Their dr. tested with the Elisa test and it was neg. so I was told not to worry about it. Did your LLMD test your children??
I hope if anything this email helped to let you know that you are not alone.
Hang in there. And good luck to your daughter with her upcoming surgery. I also had that surgery to remove ovarian cysts which they think is also lyme related. Maybe it won't be endometriosis. Best of luck.

lynne

[This message has been edited by lynnic86 (edited 19 October 2004).]

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lynne,

I haved lived in Lancaster County all my life, very close to "Amish country", I also spent a lot of time (almost every weekend during the Summers') in Northeast Maryland. As a child my family went camping regularly.

My family doctor tested my children many times over the years since they were small - because they had a lot of the symptoms of Lyme. But of course, the test always came back negative. We were constantly at the doctors for different things.

Boy, do I wish I would've known then what I know now! My daughter was exhibiting the symptoms of rhuematoid athritis and she had fevers they couldn't figure out the cause, swollen lymph nodes, stomach problems, heart issues, etc. She is a mini me.

My son has an unexplained neurological disorder (he loses control of his muscles at times), sinusitis, tonsilitis, his skin doesn't heal well, he's had blood clots, hip pain, (something with the soft tissues in the hip joint), etc.

My LLMD did test them, but he is treating them clinically because of my history and because of all their symptoms. And during their younger years every time they would go on antibiotics for something, they would get worse. (What I know now - they were herxing)

Your response helps a lot - sometimes you feel like you are so alone in this, even with both my children having lyme too. (At least we have each other, although I feel terribly that they have to go through this too - and that I'm the one inadvertantly gave it to them.) That part really bites.

Thanks so very much,
ArtnSoul

I had minor problems all throughout my life. Some not so minor, but still I had "the flu" that would get me every single season change, chronic tonsillitis, chronic sinusitits, a what they used to call "nervous stomach" , ovarian cysts, exercise induced asthma, petite mal seizures, migraines ( I couldnt play in the sun, or my brain would "click" and I would tell my mom my brain was loose")and severe hyperhydrosis

But I think the thing that got me the most was the fatigue that nailed me after I had my first son, that got worse with my subsequent kids. After my third kid, I became

hypokalemic, and had plenty of problems with S and T waves on EKG's being messed up.

It wasnt until 2000, ( and I had been plaqued with all those symptoms from age 5 to age 26) that I got slapped very hard with neuro lyme in a split second.

Some times I try to kid myself that I got sick RIGHT BEFORE ( bit) right before I got sick.. but how would that explain antibiotics curing ten years of hyperhydrosis? Or curing 21 years of stomach problems? Or my kids being born with birth defects.

Its an uphill battle, but I am getting there. I hope.

Please make sure to check your coinfections! Even though you have been sick a long, long time, coinfections will impede your recovery, even if they were negative!Alot of LLMDs are just giving the medicine for them, if you herx, you more than likely have it.

I say this from experience also. I still have a lovely coinfection, bartonella, goofing with me.

We will all get there! My live in yelled something at me the other day while I was cranking at him and screaming h ow I want my life back. He looked at me and yelled "YOU WANT YOUR LIFE BACK? THEN TAKE IT"

It made a lot of sense and helpeed me to see that sometimes, when I skip my medicine, or I eat junkfood, or I drink a cup of coffee, that I am not taking anything back.

I just did what ever I had to do to deal with life, like you said, it was just the way I was. Now looking back it makes much more sense.

solsearcher,
You said when you wake up in the morning you're ready to go to bed - I can relate!

TheCrimeOfLyme,
You said your boyfriend said,
"YOU WANT YOUR LIFE BACK? THEN TAKE IT"
It made a lot of sense and helped me to see that sometimes, when I skip my medicine, or I eat junkfood, or I drink a cup of coffee, that I am not taking anything back.

This statement is really a jarring one - and made me want to get more serious about taking control of my health.

Thanks so much for everyones posts, they help. Maybe now I can slowly crawl out of this bucket of sludge that I call my life, and start looking at things more positively. Instead of thinking that I'm stuck in there forever!

ArtnSoul

Thanks for your response to my questions. I am not having the greatest day today so this will be short.
I really can't say that my kids have LD symptoms just sometimes they say something that makes me think uh oh that might be or could it be kind of thing. I will see my LLMD next week and maybe I will ask him more about it.
I grew up in Montgomery Co. but my sister now lives in Lancaster CO. What a beautiful area you live in.
Hang in there.

When I read your post, I could not believe how similar your symptoms are to mine. It was unbelievable, I think we must have been bitten by the same tick! I had tonsillitis so often, I had to have them removed at age 25. They had huge holes in them, gross!

I now live in Arizona, moved here in 95, but saw a doctor in Jersey since 93. She put me on 17 weeks of IV Claforon and Primaxon, three times a day. While on the treatment I did not seem to improve much. But when I stopped, I then had the best three years of my life, almost all my symptoms disappeared.

I stopped all antibiotics, I think now it was a big mistake. All my symptoms have returned plus one I did not have before. This is unbearable upper spinal pain. Without my pain medication I could not live. And sleep would be impossible. Fortunately I have a good doctor here in Prescott, that is very helpful.

I also now see Dr.C in Missouri. I really like him! The main thing he has helped me with so far is fatigue. I did a hormone panel test, and it had 17 abnormalities on it. He said it was one of the worst he had ever seen. Since taking small amounts of natural hormones, by fatigue has improved 90%. Unfortunately this has not helped my pain at all. He also found out that I have high concentrations of some heavy metals. I plan to try some of his recommendations on getting these out of my system. Money is a huge problem for me, since I've been unable to work since 1988. I don't mean to be whining about this, I know there are many, many other people in the same boat. Also I must say I have a huge amount of things in my life to be thankful for!

Saying that, I know firsthand how frustrating and hard this illness is. At times I just want to give up! But we must all never give up hope!!!

I wish you health and happiness, Phil

I have never been well, always caught more viruses etc.

I am 44 and going on m y 6th month of IV antibiotic can get quite dispruptive.

Lukily my children ----I don't think at this point have lyme. They are in school and my husband works fuultime trying to make ends meet without my income which was half of what we made.

I have filled for SSI-playing waiting game for answer which I expect to be denied--have attrney ready--still does not pay the bills.

My sleep clock is much like yours is --but my clinical spychologist who only works with chronically ill patients sugest I try and keep some sort of schedule--I adhere as much as possible-up with the kids etc--doesn't always work--last night in bed at midnight, could not sleep and them woke up at 3:45 am with the worse pain in my knee and hip of the leg I had surgery on--could not fall back to sleep so took some pain med and stretched and channel surfed. I then force4d myself to go to the new walmart supercenter and walk each and every isle--had to get some exercise--leg cramps let me know.

then nap-----then accomplish what I can in the way of house work. I, too am in the same clothes when husband gets home--but i wear sweats so I am kinda dressed--LOL

I have been thropugh the wringer diagnosises: osteo arthriotis way beyond my years, DDD-fopr which I have had c spine fushion of 4 vertabra endometriosis since i was 20--4 laproscopic surgeries and now have pelvic floor dysfunction which is very painful with the IC-lost all female parts a bit at a time, torn meninscus in knee-two knee surgeries created a third almost two years ago--with the lyme it has been hard to reablitate properly, Interstitial cystitis, chronic sinusitis, tendonitis thanks to levequin, IBS and depression with anxiety. Ohter than that I am fine.

I do not mean to be flip--I just try real hard to keep a sense of humor about things--trust me you are cathching me at a good moment.

My husband is lost--I ran the household, bills, everything--kids are 15 and 10 and it takes stripping their rooms of one thing at a time for them to get their chores done. The husband is so stressed works overtime in high stress job as a special proceedures tech--he is the one who assists putting in the picc lines.

He does not do the sick wife routine well and this has been going on for a while with one thing after another 1999-lt tube and ovary removed, early 2,000 the spine surgery,late 2000- complete adominal hysterectomy, 2001 -meniscus repair on lt knee due to table falling on my leg in the OR while ultrasounding a case--yes I am a health care worker ultrasound-specialize in OB?GYN and graduated in '99 not knowing what was wrong with me but fibro and its anoying side troubles--meniscus repair was infected after 1 month of rehab and off crutches and they had to open me back up--of course I lost my job the day my disability started but after all I had 2 surgeries and they were not paying for a third so found a technicality to fire me on because my daughter got hurt playing soccer and I had to leave 1 hour before my shift was over--not only lost my workman's comp case-but over 20,000 in private disability I worked for. and in 1993 had to have acl reconstruction on my knee as well

my husband.............knew I was talking about something...we just do not talk anymore--we exist under the same roof going through the motions, numb--thousands in debt with creditors calling every day and a paycheck from being homeless. If i cry or need to talk and anything negative comes out he gives me the you have to think positive routine or you won't get well-duh-i meditate, pray, read something spiritual everyday and stretch 4 out of 7 days--some are doing nothing but ZZZZZZZZZZZZZZZZ snoozing.

He works therefor he IS--does no yard work, no car cleaning , nothing to help AT ALL around the house. so it is me and the kids everyone is resentful because we are used to being a middle class family and they were used to me pushing through the pain way way too hard for 10 years--runing my own businesses etc and taking care of the house, cars, yard, bills, dinner, laundry etc

One day back in February my doctor looked at me and told me to quit my job before I calapse. got refered to a clinic in huntersville with a doc specializing in lyme--I have a positive PCR and many bands and co infections--a lot of my ongoing health problems could be blamed on the disease. Used to hike the appalacian trail up in your neck of the woods back 14-17 years ago--we are talking backing in tents for 2 weeks at a time--ALOT-I came out with bug bites and rashes who know back then-----long story shortmoved to Phoenix in 1991 was very ill, out of work andin bed for 6 months--diaagnosis Chronic Fatigue Syndrome--who in there right minds int he middle of the dessert was checking for ticks.

so her I am angry some days, cry some days, smile on others. I am alone no relatives and my friends have all but dropped off--i moved to charlotte from greensboro last year and have been too sick to make new ones.

no support group here--only for cfids and I found it too geared to cfids, trying to connect with my church but have been too tired to get there--'bout the only place I go is for my kids, doc apts and grocery shopping--with the teenager because I space out so much and have to sit it would take me 3 hours to shop.

I try and relax, I have strong faith in God -even though I am mad with him too at the moment=--my pastor emails me every day which is nice. My neighbors are all the keep to themselves type of folks--I HAVE TRIED TO MAKE FRIENDS-HELL ONE NEIGHBOR ACTUALLY HAS FIBRO AND SHE CANNOT RELATE.

sheeeeeeeeeeeeshhhhhhhhhh-you thought you were long winded--just related to your post --email me anytime or just reply

your sister in the he** on earth

I am sorry to hear how bad you are feeling. Just one thing comes to mind, have you had an up to date full thyroid panel done recently to see what your TSH, Free T4 and Free T3 are?

I used to have really bad pains in my body but now that I take Armour all the pains are gone apart from occasional migraines. I also needed to treat my adrenals too.

Often traditional doctors do not treat the patient even though their T4 or T3 might be at the bottom of the range they just look at the TSH which might well be normal.

Mary Shomon gives lots of really good info on her Thyroid.About.Com site.

Yep,
Your list of illnesses look like mine.

Some days are better than others.

Been treated 2 years...won't stop til its gone.

You are NOT alone...and, please gimme a break here...of course its fine to talk to us about your problems..we all need to talk about them.

Trout

It's like the Statue of Liberty, only its called LymeNet. "Give me your sickly, your exhausted, and misunderstood..."

It is here that I come for solace in these difficult days. It boosts my spirits tremendously to read everyone's posts and see that I'm not alone and misunderstood anymore.

What we can't squeeze into a LLMD visit, we can expand on here. Someone here almost always has firsthand knowledge of what ever it is I'm wondering/worried about.

We need each other.
We support each other.
We have each other.

What also struck me was how you said you feel free now. I have been wondering lately about the person I could have been/or will be when all this (lyme) is no longer taking over who I am.

Golf Tick44,
We just may have been bitten by the same little bugger - how long do they live? I was probably infected about 38 years ago.

I can relate to the tonsilitis thing, one year as a child I had it 9 times!

griswoldgirl,
You said you have pelvic floor disfunction. I'm curious about that - in 1999-2000 I had 3 surgeries all within a period of 9 months for a pelvic floor prolapse.

That's when all my neuro. problems with lyme really came out, this was before I actually knew I had lyme, but looking back I can really see it.

As far as the situation with your husband, I can relate to that too, this really can take its tole on a marriage. I think it tends to be hard for men to deal with what they may see as "weakness".

My husband is getting a little better at dealing with all the health issues the kids and I have. But, he has also been dealing with some symptoms..... We just had bloodwork done for him, didn't get the results yet though.

Lil,
Thanks for the "heads up" on the thyroid thing, I'll talk to my LLMD about that when I see him again, I know that both of my kids' levels were a little off the last time we had them checked, but I think mine were ok.

troutscout,
Hey we're the same age. I'm sorry about your wife, I hope she's doing well with the cancer. You said she's in Lyme denial - do you think she has lyme too? I'm sorry about your kids too.

And thanks for saying it's ok to talk about my/our problems, I tend to just keep it in, because I don't want to be a "burden" on anyone...dumb, huh?

kitsicox,
I agree with you whole-heartedly. I don't know what I would do without the support that I get on Lymenet. If it wasn't for this site, I'd still be in the "It's All in Your Head There is Nothing Wrong With You Hypochondriacs Club"

Of that I'm eternally grateful!

Thanks for your post. This is something that I have been persuing with my LLMD too.

He is very interested in the Marshall Protocol, and says that it seems right on target. I think he is a little hesitant because I would be the first person He would be trying this form of treatment on.

I understand competely... ive had symptoms for 17 years (since i was 10)

At 23 I was finally diagnosed and I have been in treatment four the past four years...

Ive gotten better and worse over the four years.

My main symptoms are currently:

constant: pain in every single joint in my body, pain in the bones in my arms and legs pain in the muscles of my arms and legs, Fatigue, partial numbness in my feet toes and ankles (although the joints and bones still hurt)

intermittant: headaches, shooting pains, abdominal pain, nausea, sweats

i think i got everything

When I was 12 (after 2 years and a billion tests) they didnt know what was wrong with me so they kept saying I was faking,,, or stupid stuff like i drank too much ice t,,,, also they told me it was my fault I felt so bad (then i hurt in my joints, achey all over , severe nausea, and fatigue...there may have been more but i dont remember) when they were yelling at me saying it was my fault i felt so horrible I was in tears and then at 12 years old io swore i would not go back to the dr for it ,,,,

and i didnt until i was 23 and had days where I couldnt get out of bed.

so i understand the whole its in your head thing.

and your neighbors are crazy... in my experience if you push yourself "more" meaning too hard... you crash and it takes you longer to recover.

and when i say fatigue i mean i usually sleep between 12-18 hrs a day and on the bad days im groggy the few hours im awake.

and the pain in my body is currently so bad that im in pain management.

i'm not the typical case though i was really getting better than i had over a year of various complications that taxed my system and caused me to get worse.

I did orginally have a coinfection which i did get rid of.

also my llmd now suspects that I may also have babesia.. so i'm hopeful that when this gets treated I'll start seeing my symptoms diappear.

what i'm trying to say is that unfortunately there is no time line to when you will feel better...but just know that you can feel better and dont give up if you have a relapse for one reason or another..... I havent... I KNOW i'm going to get better and get my life back.

Artnsoul, I've been misdx for 34 years; just found out I have late stage lyme 3 months ago using the western blot blood tests.

Can't remember but someone else above mentioned SSI or SSDI, find my post on SSDI and I posted there the wonderful, DISINISSUES, web site link.

A MUST READ for those going thru either process from those who have gone that way and attorney patients!