After over 10 years of poor health, I've finally got an appointment with a local Lyme dr. in my area next week. This is my last hope of getting my life back.
After all these years, I've honestly lost faith in the medical professionals. They either don't listen, aren't knowledgeable, or just simply only do 'so much.' If this Dr. can't help me... I'm not sure I'll have any options left.
I got mysteriously, and debilitatingly ill over 10 years ago. I'm sure you all know the drills: doctor after doctor, specialist after specialist, test upon test, including Lyme's testing multiple times... no real answers/help at all. 10 yrs ago, I was dx w/ CFS, FM, and IBS.
I'll never forget the day a DR patted me on the back and said, "Im sorry, but you may be sick for a really long time and there's nothing I can do for you."
She proceeded to try to make me 'feel better' with antidepressants. Don't get me wrong~ nothing wrong with those, I'd take them if they helped... but I was so sensitive to everything~ I couldn't even tolerate those! I was left on my own~ miserably sick, helpless.
I gave up on medical dr's and began trying anything I could to feel better: acupuncture, expensive supplements/herbs/homeopathic remedies, colonics, chelation therapy, cleanses, organic/allergen free diet, etc. It actually helped 'some.' (I never felt 'well', but was able to function again.)
The cost and energy of it all took it's toll, and after a year or so, I went back to my normal ways. I was never even sure what specifically helped, or if a combination did? But, maintained the ability to function in life, even work outside the home, even though I didn't feel 'normal,' for quite a few years.
This past year, I've relapsed and become sicker that I've ever been. I had to quit my job. I have been unable to function, once again.
I was happy, however, when dr's found 'real, treatable' issues this time: Hashimoto's Thyroiditis, Gastroparesis, SIBO along with the CFS and FM. I was thrilled to be able to 'take medicine' to help! I thought, this is it~ I'll finally get my life back!
BUT~ I SHOULD BE GETTING BETTER & I'M NOT!?!?
The joint/bone/muscle/everything pain is still so bad it hurts to breathe or wear shoes! Heart palpitations, weakness/fatigue, feeling like a have a 'fever' but my body temp is only in the 96's, jittery, dizzy/faint feeling, head aches, facial rash that always get worse as my symptoms do, and stomach pain that gets worse as my symptoms do too (esp. under my left rib cage?), the list goes on.... leave me lying in my stinking bed.
The DR.'s are done with me, once again. My primary Dr insists it's simply CFS. My endocrinologist can't / won't help me anymore (other than the thyroid levels). My GI doesn't listen and only focuses on the Gastroparesis & SIBO~ won't look any further. My Rheumatologist insists it's simply FM.
I've even been told that a 'Good Psychologist might do me some good"!!!!
I'm feeling like I'm slowly dying, and no one can help me.
Could it be Lyme?
I grew up in MN. I've camped, fished, hiked and spent every summer 'up north' in the outdoors all my life. I never recall a 'bulls eye rash,' however, i've picked probably hundreds (if not thousands) of ticks off me over my 40 years.
My dog has Lyme.
Recently my father got 'mysteriously ill' like me. Same drill... Lyme test also negative. I kept telling him, "wow, you have CFS/FM like me," always wondering if it was something genetic.
He recently stumbled upon a neurologist that pointed him in the direction of a Dr that specialized in Lyme. He paid $1000 for the IgenX Lyme test.
Sure enough, he, too, has Lyme (along with another tick infection...can't remember which one.)
I'm hoping and praying that this Dr. can finally help me too?!
If she can't, I'm afraid of what my life will be like. I can't imagine another 40 years of this (10 years has been miserable enough)!
How long did it take some of you to get your life back? I'm interested in all the stories, encouragement, truth (good or bad~ just so I'm prepared), facts, help I can get. Thanks!
-------------------- I can do all thing through Christ who strengthens me. Taking things one day at a time... trying to get my life back. Posts: 35 | From mid west | Registered: Sep 2011
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Welcome - at least you made it to lymenet, and that's an accomplishment in itself, after all we've been through.
Sounds like Lyme to me. You can google for the symptoms of Lyme disease and see how many you match. That's what I did in the beginning - I also googled symptoms for the co-infections too - babesia, bartonella and ehrlichia. You'll see for yourself what you match.
Re your rheumatologist calling it FM, my FM diagnosis of 25 years, following a known tick bite, turned out to be Lyme disease, and so did everyone else's, the fibro folks I managed to find.
With some Lyme treatment, you're going to have a chance to improve, and we all do that at different rates. I suggest you post in Seeking A Doctor, if you haven't already, for referrals to Lyme-treating physicians for you and your father.
Vets do treat Lyme, so you could check with one in the area for your dog.
And start learning about Lyme disease here! You can use the search function at the top here to read the archives too.
Posts: 13171 | From San Francisco | Registered: May 2006
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
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Angelaw, your post sounds as if I had written it. Sick for 15 yrs. then throwing in the towel and trying to function normal, then sicker than ever.
One day I was so sick my husband took me to a PA, she thinking I had MS did test me for lyme /western blot. All my lyme test had been negative but never had a western blot, which came back positive for lyme this was through Quest labs which most of the time always come back negative. Well it was negative by CDC standards but this gave the PA a clue..
They put me on doxy right away but it made me sicker, yes I know herx but this was causing me terrible GERD etc. This was in Oct. of last year and I finally saw a LLMD in Feb. Many test, lots of money and I am still struggling..
Don't mean to be negative but I want you to know even with good treatment it still takes a long time and a lot of days you will be sicker. For me, at my age the LLMD is trying for a 40 % improvement.. There are times I feel like giving up and come here to the board and cry and they get me back on my feet.
Your regular doctor can do the Igenex test if he would you have to order it. The LLMD I saw did most of my testing through Igenex.
I so feel for you, believe me I can relate to every word you posted.. Please keep us updated.
Oh, before I was dx with lyme I was first dx with an inner ear disorder / anxiety /depression did that drill for a couple of yrs. then later dx with Chronic Fatigue and Fibro. so for 12 yrs accepted the dx.. If only I could have gotten the dx earlier..
Posts: 1058 | From VA | Registered: Oct 2010
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I'm in tears knowing I"m not alone... but feel like I am most days here. I'm an emotional wreak, along with a physical one! I cry ALL the time!
I think most people who don't know me, and many who even call me "friend" think I'm nuts (a hypochondriac, baby, or attention seeker.) Especially due to the fact that I'll have better days/weeks and re-enter life as best I can (I don't 'look sick) and then get really sick again.
It's hard to even talk to people about it~ even my husband. He selfishly just wants his wife back~ and get's very distant. I'm really not any 'good to' him, just a thorn in his side!
They just don't understand! Some friends have even started to 'avoid' me (for fear I'm needy or a fruit cake or something? who knows).
I've looked up the long list of symptoms, and yes, I have about every one (there are only a couple that I don't have /have never had at some point in my struggles.)
DO EITHER OF YOU (OR ANYONE OUT THERE) HAVE GI ISSUES? I'm wondering if the possible Lyme is camped out there now, or if the Hashimoto's caused all that? The treatments for gastroparesis & SIBO arent helping the terrible pain and inflammation in my gut~ wondering, again, if it's the Lyme causing that??? Although, I believe I've also read how Lyme can cause Hashimot's too?
ROBIN~ I haven't yet looked for the 'other' co-infection symptoms. WHERE CAN I FIND SPECIFIC/GOOD INFO ON CO-INFECTIONS & THEIR SYMPTOMS?
I've heard from my dad that one of the co-infections (not sure which one) has a predominant symptom of sore feet? If that's the case, I'm quite sure I have that co-infection as well. (It hurts to wear shoes some days~ I have to wear slippers) .
PHYL~ I had asked my regular DR. for IgenX testing, after she insisted I simply had CFS. SHE REFUSED!!!
She tried to refer me to the infections disease clinic at our states university hospital. THEY ALSO REFUSED TO SEE ME when they were told I wanted to look further into Lyme!!!
I was devastated! So, sick and dr's not only don't know what I 'truly have" but are REFUSING to see/help me! wow!
I've since watched "under your skin" and know now why they all had refused to see me/test me. What a shame!
I have miraculously found a truly Lyme treating doctor (well my dad has.) She has started treating my dad.
There are very few dr's in our state that 'truly treat/specialize in Lyme' and they are booked out many months. She also doesn't take insurance (which I now know why, after watching under your skin.)
I've put off seeing her these past few months knowing I couldnt honestly afford to see her or pay for the tesitng. I've had to quit my job this past year (I'm way too sick to work, let alone get out of bed many days) making $ pretty tight... just not sure how I can afford her?
I also put off seeing her hoping and praying the dx and treatments of the hashimoto's, gastroparesis, and SIBO would finally be my answer! I was SO HOPEFUL. My hopes were killed as I've had (am having) another debilitating relapse once again.
I'm very scared, confused, and frustrated. I desperately want the dx FINALLY of Lyme~ so I can FINALLY get the help I've been waiting so long for. But, at the same time, I DON"T want that awful dx~ because I know what a bad thing Lyme really is!
I'm scared that when I do finally get treated, I'll get worse before I get better. I honestly can't imagine getting any sicker. I"m already bed ridden many days/weeks at a time (having to crawl down the stairs, getting dizzy/faint even sitting up straight).
I'm also scared that this has gone on SO long, that the damage has already been done and it's too late for me. I honestly can't imaging living the rest of my life this way.
PHYL~ you said you're looking for a 40% improvement at "your age." I know, at the moment, I'd be happy with ANY improvement. May I ask how old you are? (I'm 40.... but feel like 80 most days.)
Thank you BOTH for letting me vent, and for truly UNDERSTANDING (where most in my life close to me here don't). Again, I'd appreciate any advice or knowledge I can get.
-------------------- I can do all thing through Christ who strengthens me. Taking things one day at a time... trying to get my life back. Posts: 35 | From mid west | Registered: Sep 2011
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Angelaw I am sorry you have "joined the club". I was told for the last 6 years that I had fibro, CFS, hypothyroid, blah, blah, blah...
I have been sick off and on for about 30 years, but very sick last 6. I never fully believed in the fibro/CFS diagnosis that I got and about 6 months ago stumbled onto Lyme Disease.
I just went to my first LLMD appointment this week and was put on Tetracycline and Flucosanole (for yeast). The Dr. told me he hopes to get me to 40%-50% and I'll take it for now.
Fortunately for me my husband is understanding of my limits, but he has his moments where the stress gets to him. I also think that he and my 2 kids have Lyme and I am going to be the guinnea pig for treatment before I start them.
I'm sorry for hijacking your post, but I know how you feel and I also wonder if I'll ever get my life back. For me I just have to believe that I will, that we all will.
-------------------- Down on her knees, she wept on the floor. This hopeless life, she wanted no more. Dead in the mind and cold to the bone, She opened her eyes and saw she was alone. ~Seether Posts: 427 | From Rhode Island | Registered: May 2011
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you didn't 'hijack' my post at all! thank you for responding. It's so nice to hear from others who really 'understand,' finally, how I feel. It really does help knowing I'm not alone.
I, too, have 3 children. I also wonder about my daughter. About 8 years ago (before I found this Lyme knowledge... Im just starting to learn) we removed a deer tick from her neck and she did get the bulls eye rash. She was treated with the standard 4 week dose of some type of antibiotic.
While she certainly isn't sick like me (she's a very athletic, energetic teenager)... she also exhibits some signs. She had joint pain issues. She's, of course, done many test and seen a Rheum. and was told she had Hypermobility Syndrome (loose joint, to put it simply... and yes, she does and VERY loose joints. This runs in her father's side of the family).
Now she had terrible stomach problems (gerd... acid reflux, etc). She has daily stomach pains, she can't eat breakfast/early in the am... she get's physically sick, and she vomits acid in her sleep.
I don't know if there's a 'connection' there, either (Lyme/stomach)... but it does make me wonder.
My prayers are with all of you: Robin, phyl, and mom2kids.
We HAVE to believe we'll get better... even when it's hard to believe, right?! What other choice to we have to keep going?
-------------------- I can do all thing through Christ who strengthens me. Taking things one day at a time... trying to get my life back. Posts: 35 | From mid west | Registered: Sep 2011
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The coinfection that is usually assocated with sore feet is bartonella. Ticks can give you a lot more than lyme.
Your GI problems could be bartonella too, although the nervous system affects the GI tract and lyme is a neurological disease.
One way to avoid a major crash (herx) when you first begin treatment is to ramp up on the dose of drugs, start one before you start another. If you are really worried about this, discuss it with your doc.
Another thought--a chiropracter or naturopathic doctor could order the IGeneX too for you, if your GP won't. However, even at the best labs, you can't always count on testing to tell you whether you have tickborne diseases. Many reasons for this including the fact that long sick people may have stopped making antibodies, which is what most tests are measuring. There is a new culture test available, ask your lyme doc about it when you get there.
And by the way, the test at IGeneX did not cost your father $1000, there would have been the appt. charge and whatever else was involved.
Posts: 8430 | From Not available | Registered: Oct 2000
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Yes, it must be the bartonella that I was thinking of (there are so many, other than the Lyme!) Could you, perhaps, recommend a good place to look for specific symptoms of all those other co-infections? (not just general lyme)
Sorry for needing clarification... this is all new to me. To avoid a herx reaction, you recommend that I need to take an extremely high first does of only ONE particular antibiotic, but only start the one drug at a time? Is that what you are saying? Then how long do you think I'd need to wait until I'd start on a 2nd drug or should I not be on 2 at once? (I know that many are on 2 or 3 different ones... and that different one may be needed for the different co-infections??)
I will talk to this new dr about this next week... but am curious what's worked/not worked well for people? (As I said, Im terrified of getting worse... It's hard enough to function / can't imagine getting even sicker?!)
WOW~ I have always wondered if I've stopped making antibodies by now to things. (I do feel as if I have Lupus too... all my symptoms are exact, but my blood test don't show those antibodies either.) Was always my presumption... but didn't know that was factual thing that really happens?! wow.
Yes, my dad did have a couple of IgenX tests done. The main Lyme test and another one or two to look for co-infections or something?. Maybe he was exaggerating.. but I do think it came to near that (in the 900s?) .
Thanks for your help too, Lou!
-------------------- I can do all thing through Christ who strengthens me. Taking things one day at a time... trying to get my life back. Posts: 35 | From mid west | Registered: Sep 2011
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Angelow, how I feel all your pain as I have been there and many days still am.. I am 68 but my LLMD said I have probably had lyme for many years.
Speaking of being emotional, I cry all the time as I seem to have no control over my emotions. I have weird head feelings , off balance , I honestly feel like I am crazy at times. So many simple things I would like to do but like you I am in bed and mainly housebound. I do believe with you being only 40 you will bounce back as soon as you get dx and treatment begins.
I was tested for co-infections through Igenex Bart and Babs and all negative also my toxic test were negative. So guess that is good but why do I still feel so bad. Every now and then I will have a not so bad day and it is the most wonderful thing ..
My husband and children try to be understanding but don't get it and who would if you didn't have it.. I sure wouldn't. My children think I am just a mean old woman. How I miss my grand and my greats that I am not able to see like I would like.
Speaking of friends, I have none.. truly I don't. I can't go out to lunch, shop, can't tolerate smells or smoke. Can't even get a hair trim that is if I ever felt like going.
Well, you didn't need to hear my complaints.. I just want you to know I soooooooooo understand, just wish there was something I could do to help..
Prayers and hugs
Posts: 1058 | From VA | Registered: Oct 2010
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@ phyl... oh sweetheart! i feel your pain. i wish I could come to VA and just lay in your house and be your friend too. It made me feel at least a lil' better knowing I wasn't alone, after finding this sight. And, even though i just joined yesterday, and it's just words through a computer... you have ME as a friend! you can send me personal messages any time... I've been learning a lot in my search and have just today learned how much it helps just knowing someone UNDERSTANDS!!!
I get it! It really is hard to maintain friendships when you can't "DO" what most can do. I've turned too many down on activities and certain don't have the energy to reciprocate any favors.
I get the grandkid thing too. I feel like a terrible wife and even more terrible mom. I missed my youngest son's very first football game ever this past weekend because I was too sick to get out of bed. I also missed my daughter's volleyball tournament this week, and couldn't stay at church last night to watch/hear her play in the band for the first time.
Yes, we're missing out on LIFE... our families lives. It's HARD!
How long have you been being treated now?
It WILL GET BETTER! I'm praying for you Phyl! =D
-------------------- I can do all thing through Christ who strengthens me. Taking things one day at a time... trying to get my life back. Posts: 35 | From mid west | Registered: Sep 2011
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Ramp up means start low and gradually increase a dose. Not start high.
Your doctor will have some opinions about when to start a second drug, depending on your response to the first one.
Posts: 8430 | From Not available | Registered: Oct 2000
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phyl6648
Frequent Contributor (1K+ posts)
Member # 28522
posted
Ange, been in treatment since Feb. started slow on supplements to help build my immune system and lower inflammation .. Took one thing at a time. Some I could take some not. Oh, I went on a gluten, sugar, dairy free diet per my LLMD.
I have been on the abx about 5 months but still at a low dose and only once a day. Started with one every other day also still on some supplements. My abx is clindamycin, only one.
I do take xanax for anxitey, vertigo and the off balance feeling it takes the edge off. In fact that is the only drug I have found that I can tell helps me, guess it helps me tolerate all the other "stuff".. I am due to go back next month for more labs etc. but may go before. I do plan on a phone consult asap.. As the past month has been bad..
Thanks friend , oh I wish we were near. We so need friends more than ever. I am so anxious to hear how you are doing, how you are feeling , symptoms etc.
My head feels so full/crazy today but I am going to try to get in the car and take my granddaughter to work. It will only take about 20 min.. Got to get out of the house but so scared. Oh that is another one of my symptoms I am afraid to go places, due to the fact I feel so bad and always think "what if"..
More later.. hugs/prayers..
Posts: 1058 | From VA | Registered: Oct 2010
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saw LDMD today. diagnosed with Babesia, Bartonella, and Lyme. Md said I've very likely had this since childhood (I'm 40 now!) Wow, if I had know back then? All the years of pain & agony it would have saved. Being told as child I needed more sleep than most kids... Being told as a teen I was anorexic (when I ate like a horse!)... Being embarrassed in my 20's because I couldn't keep up like other mom's... Being told when I was 30 that I had CFS, I was going to be sick a long time & there was nothing they could do! ... Being unable to hold my children. Being unable to get out of bed. Being unable to be the mom, wife & woman God created me to be. Being told at 40 that a 'good psychiatrist might do me some good.'
mixed emotions! I wouldn't wish this on my worst enemy, this is not what I was looking/searching for... but I was desperate for this diagnosis. I know I have a long road ahead of me. BUT... Now, I found the FINAL missing piece to this incredibly difficult puzzle of debilitating health issues. Now, there's a reason for my sufferings. Now there's something more we can DO! Now, I CAN & WILL get my health and my LIFE back! Thank you Jesus!
-------------------- I can do all thing through Christ who strengthens me. Taking things one day at a time... trying to get my life back. Posts: 35 | From mid west | Registered: Sep 2011
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