Where are all the Lymies????

[Buttons]

Well geez, it has taken me this long to find BT!! Hope some other's can figure this out also!

Didn't help any that my neighbor helped me with some computer problems & replaced my google with yahoo! Guess my brain isn't totally bugged out cause I managed to figure this out on my own.

So happy to be back-this is my favorite place to be!

Hope everyone reading this will have some updates on how they're doing. As for me,well it hasn't been the best of times. No tolerance for HEAT anymore!

Take care everyone!
Buttons

[Bubbi]

I am a Lymie--look forward to sharing about this disabling condition.

[BlymieLymie]

I just registered today, and I was "diagnosed" with Lyme. I think I started having symptoms about 4 years ago when my marriage at the time was getting out of control. I've pulled hundreds of ticks off in my lifetime, and over the past 7 years can think of 3 bites that gave me trouble - one that itched between my toes for at least 4 weeks!

I think all of the stress leading to my divorce and the actual divorce made my symptoms more apparent to me, and they have gotten progressively worse - especially the past year. For over a year, I've had a high-pitched ring in my ears, stiff neck, lower back pain, headaches, burning eyes, decreased vision, and I am constantly tired. There's more symptoms, but those are the most prevelant.

I have had Drs attempt to solve the problems with allergy meds, nasal sprays, birth control, anti-depressants, even suggestions to have a hysterectomy thinking it was peri-menopause! I never opted for the hysterectomy because nothing else was helping any of my symptoms and I didn't believe that was the problem. Nothing helped!

I got to talking to a girl I work with who is being treated for chronic lyme, and we talked about her symptoms, and much of it sounded so much like me, I aggressively started researching Lyme.

The first test, Lyme titer, was above normal levels and the "CDC recommended the Western Blot". I had that done, and had two positive and three "undeterminable" bands on the IgM and two "undeterminables" on the IgG. B-12 was also very low. In my Dr's words, he is "reasonably certain" I have Lyme. Before I left the Dr's office, I was given a 3-mo shot of B-12 and perscribed 800mg of doxycyclene per day and to take over-the-counter probiotics 3/day and 1,000mg/day of Vit C. I am also drinking two RELIV drinks (which has more than enough of about every vitamin and mineral you can think of). I'm not as tired right after a drink, but it only lasts about two hours and it's downhill from there.

I would be interested in hearing your story and knowing how you progress. Any advice on how you make it through the days would be appreciated too.

I look forward to hearing from you.

[BlackRoze]

Originally Posted by Buttons

Well geez, it has taken me this long to find BT!! Hope some other's can figure this out also!

Didn't help any that my neighbor helped me with some computer problems & replaced my google with yahoo! Guess my brain isn't totally bugged out cause I managed to figure this out on my own.

So happy to be back-this is my favorite place to be!

Hope everyone reading this will have some updates on how they're doing. As for me,well it hasn't been the best of times. No tolerance for HEAT anymore!

Take care everyone!
Buttons

I'm a Lymie as Well,
Looking forward to getting to know you all better, and becoming friends.
Working together, fighting for a cure.

[cyclelops]

I usually post on the peripheral neuropathy site.

I was bitten in July 1994, developed an EM rash, with a rising titer. Back then they sent it to the State Lab of Hygeine.

Because I had scratched off what I thought was a teeny tiny scab off my posterior thigh, not knowing at that time it was nymphal tick, I didn't save it...back then, not much was known about Lyme.

Now more is known and even less is said.

I developed a very distinct and large EM rash. It was so obvious that a stranger came up to me at a park and told me, 'Mam, I don't mean to pry, but YOU have Lyme disease'. I knew I had it, but, because if you go in, here in my midwestern state that is full of Lyme...YOU GET LAUGHED AT.

I went in on Monday to urgent care, and was sitting down, told the doctor I had Lyme disease....and guess what, I got laughed at....until I turned around.

Then the entire clinic staff was called in to see what a REAL LIFE LYME DISEASE RASH TRULY LOOKS LIKE.

I was given Amoxicillin 500mg three times per day for 20 days. Rash went away...Titer stopped where it was...I never got an IgG response, only and IgM.

IgM responses are only accepted as positive in a few states. MY state does not accept it as positive.

I never got IV.

I never will get IV.

I don't know if IV would even help anymore.

However, now 13 years later, with a confirmed Lyme infection, and having it on record, I have 'idiopathic PN' and seronegative arthritis. I am negative on every potential cause of PN, except Lyme, but again, only certain labs do IgM..here it has to be IgG to be considered for treatment.

That said I still have a positive Rubella titer, and that doesn't mean I still have Rubella. It means I had the disease at one time and formed antibodies to it.

I have had nurses and doctors tell me they had it, and they got IV....Any medical person that has access to IV treatment of 6 wks rocephin, gets it. I should have been more proactive.

I know for a fact I was undertreated back then in 1994.

I just heard a doctor from our state, on NPR saying they took Lyme-rix off the market because it was expensive...They took if off due to lawsuits. HLA DR4 positive individuals developed intractable autoimmune disease from it, and got settlements and they decided it wasn't worth keeping on the market...it had nothing to do with needing 3 doses and it being expensive.

The amount of poor information out there on Lyme is a shame.

I do not advocate treating Lyme when no real specific signs are present. I don't advocate lifetime IV antibiotics nor using cutting edge antibiotics. Those HAVE to be reserved for antibiotic resistant germs or we could all die from some resistant strain of bacteria!

However, we treat acne with doxycycline, and if that can be used chronically by people with acne, I do not see why it should not be used chronically in people with a history of clinically diagnosed recalcitrant Lyme. I think it might help people from ending up with what I have.

I do not think every conceivable antibiotic should be poured into people in an attempt to make them feel better because they have had many tick bites and think they have Lyme.....however, a broad spectrum such as doxy doesn't seem to be too much to ask.

Deer ticks, especially nymphs are extremely small...I had no idea I had anything on me, and I lived in a tick infested area...wood ticks. Of course we had deer ticks too, but I never saw what hit me...I thought I had a tiny scab....just a bit bigger than a period on this page....

Lyme has been villified, and part of that problem is that many people who do not have the typical symptoms, have cost the insurance industry a ton of money. In our state, which also has a high incidence of chronic wasting disease of deer, both diseases are played down, due to economic impact.

I can't prove my other problems are from Lyme, but through process of elimination the reasonable person would conclude it is probably what I have.

If I do want treatment, it will involve expensive travel, and out of pocket payment....plus, antibiotic treatment does interfere with intestinal absorption and does cause nutrient deficiency, not to mention some of it causes peripheral neuropathy. (My PN is confirmed by biopsies and the arthritis is evident on x-ray) I am pretty young still, 54, was a citizen level competitive athlete until 4 years ago, so in very good shape despite the Lyme and the other problems...now however, it is just too much to allow for that level of activity. If you take 54-13=41. So that is when I go my Lyme...that is when my PN started but was a 'head' problem. It took 10 years for that to be discovered, and only because it became autonomic neuropathy...and I had obvious test failures indicating significant problems. 'Pain' or 'Fatigue' is not considered 'clinical' as they can't measure it. I have also been bestowed with this in significant measure.

So where are the Lymies?

All over...8% of them are on heart transplant lists, yes 8% of people awaiting heart transplant are positive for Bb. They have a variety of other conditions that the medical system recognizes as 'real' or they are diagnosed with mental disorders...take your pick...

I can't say my infection with Bb did cause my current condition, I can't say it didn't. If it didn't, what did? The medical community answers that with the word "idiopathic" or cause unknown.

[dreambeliever128]

My name is Ada. I came over from the RSD forum to ask some questions about Lyme disease. I was just diagnosed with it Tuesday.

I live in Co. where we have delt with the wasting disease of deer about 4 years ago.

I have had more ticks on me then Carter has peanuts. I grew up in Ky. where you had to pick them off everyday.

I've lived in Colorado for 35 years. I just lost my husband of 35 years in Nov. I believe this has thrown me into a meltdown and I can't get better.

I deal with Cronic Fatique syndrome so bad that the Drs. don't know what to do for me. I also deal with depression. I have a Vegal Nerve Stimulator in me for depression and I may have to turn it off because of being too sick to stand it. It was just put in in April but it hasn't helped me very much if any.

As far as the Lyme disease, I said in my other post, I have a friend that had it and he told me he thought that it was what I had years ago. I just let it go out the window. He has now moved to Alaska but he couldn't get the help he needed here for it.

I can remember having the rash on me a couple of years ago but I thought it was ringworms but then I knew it didn't look like ringworms.

I have dear and elk hunted, fished, and camped here for years so I do know that this Dr. is most likely right on what I am dealing with along with Fibro, MS, RSD, depression, GERD, PUD, Interstital Cystitis, too much more to name.
My Neurologist looks at me as if I am a walking miracle. I am up and walking but that seems to be the extent of it these days. I don't leave my house anymore and stay sick all of the time.

This is all new to me but I have a feeling I am in for a long ride too.

Buttons, I didn't mean to but in on your post but I just wanted to tell a little about what is going on with me and that I am basically in the same boat as most of you are.

Thank you,
Ada

[sissy 1]

I have a son that has neuro lymes, now for 13-14 years, was bitten at 8 went through so much including all kinds of mental drugs starting at 19. He had encephalopathy, swelling of the brain. He got two Iv's of Rocephin the drug ! a port later put into his chest. unfortunately, he is still ill and 32. He got so tired of these stupid doctors playing with his life. He was showing improvement when I took him to Ca. San Diego lymes doctor. I don't know where you are from but there is some help, no cure that I know of
perhaps the only thing now is the hyperbaric oxygen tank, have you heard anything?
Lymes only gets worse as time goes by, never know what it will attack, I am so sorry for your illness. My son has a CNS problem and I am looking at HOBOT very expensive, but you cannot put a pricetag on life ! On the other hand, you have to watch out for promises ! I have spent allot of money. Now my son just wants to quit. Don't know what to do. I don't know if I have helped any, I know much more. You can talk to me at its.sis@msn. and I will e-mail back, I am ret. my son now has a cna who comes in and helps my son. I worked as an RMA and I wish I could say something positive to you, but I don't know anything for sure yet, I am looking at the hyperbaric. NO one takes insurance and if you don't have the money, OH WELL ! So believe me We have been though the mill.
My prayer to you is not to let this go!!! my son did and now, he is messed up. e-mail and I will definitely e-mail back and let me know your questions if you have some, perhaps I will be able to help and Yes it is a long hall if you are 2nd especially 3rd stage.
From what I hear 1st stage has hope and a good chance if treated fast.
sissy 1

[Buttons]

Hi all, I check this site from time to time & gave up after awhile on getting replies. Now for some strange reason I checked here today & look what I see! (My original post was a year ago!)

I gave up on getting an actual diagnosis of Lyme,Parkinson's,MS or anything else. I now say I have "mystery disease". That seems to shut people up!

I live in WA state,getting any doctor to recognize the possibility of Lyme is like trying to drive a toothpick into a brick wall.

Last year I decided to just give up with doctor's,even went so far as to cancel my health insurance. ( A clear indication of how my brain works eh?)

I've now suffered from all my mystery ailments for over 9 yrs. My saga began with a spider bite on my foot. We also apparently don't have any harmful spiders in my state. The bite is still visable!

Now that I've reached the point of just giving up I'm not sure I belong on a Lyme forum. Unless I win the lotto I can't see ever having the money needed for further testing much less treatment. In hindsight I should have been much more aggressive. After all the doctor's,all the tests (and a negative Lyme test by a local lab),I simply reached a point where I figured the doctor's were doing me more harm than good.

During all these years I've had some rather strange symptoms come & go. Someone mentioned heart transplants.Summer before last I went to ER because of severe angina,I had it happen again 2 more times during the same week,always @ about 3am.This is just ONE example of symptoms that come & go.

I've never found any other condition that has symptoms come & go,MS does to some extent but not with everything I've experienced. I've had some symptoms of Parkinson's,tremor,"dead arm swing",slurring words,etc.

I've had some symptoms of MS. And I have 2 lesions on my brain MRI.

I've had times of extreme vertigo. Foot drop & tripping. Sharp head pains. Hair loss & weight gain. Memory loss,very bad in the beginning! Depression,anxiety attacks,rage attacks & severe myoclonic jerks.

Have had the pelvic pain (strange thing indeed),loss of sexual desire,many,many eye issues. Feeling of water or bugs crawling on my legs (I'd actually remove my jeans to look for bugs).

Lost my "self" meaning things that used to matter to me no longer did. I lost my personality,became very reclusive. And the fatique is so bad I barely function most days.

Can recall very clearly telling one doc I felt like I'd been poisoned,I knew something was very wrong but no idea what. Everything seemed to be out of wack. My knees would swell up & hurt so bad I could barely walk. I still get sharp pains in various parts of my body. No rhyme or reason to any of this.Sometimes I sleep for 10 hrs,sometimes I can't sleep more than 3-4 hrs.

Had 3 bad sciatic experiences where I ended up using a walker. This has been one of the worse as far as pain,and the first time was right after the spider bite. No long after that I began having the myoclonic jerks. My entire body jerk from head to toes.I used to have to hang onto the walls when walking.I gave up driving over 3 yrs ago.

Don't want to write a book here,but since I started this thread & finally have some replies I thought I'd reply also. I've given up on any doctor finding an answer. I rely on my own immune system to get me by from day to day. I'm grateful for the improvements over the years. Have gone as long as 10 weeks without jerking for instance. My brain function has improved tremendously (even though it's still not 100%). I know my name,address,and phone number now!I'm able to carry on a conversation now. I remember everyday how to push the button & turn on my computer,I know what I'm supposed to do when I get in the shower.

I adopted a dog last year to save my life & he has done that. He forces me to get out & walk. He forces me to care. I had just done several months of the salt/c when I made the decision to save this dog.....before that it would have been impossible.



I'm hoping all of you will have better days ahead! And by the way,in case you think I'm now a nut case,there is ONE other person in the state of WA that has Lyme from a spider bite,they are cousins to ticks afterall. And I do happen to live in woods & have deer everywhere.

Hope for accurate testing....and always hope for a cure!
Buttons

[wickedwings]

just read your post. i don't remember why i ended up in the lyme forum, lol. anyway, i know what you're going through since i had been a medical mystery, too. different symptoms, though. i wonder about the responding, too, since i don't get many. only a couple. anyway, i understand your reasons behind giving up on finding out what's wrong with you. i feel like giving up, also. wish you the best.

[Ellie]

Maybe we need a Mystery Disease Forum!

I'll reply more, I'm about to fall asleep but wanted to pop in and say I don't think you're in the least bit crazy.

I do, however, think you should see a (new) Neurologist and follow up on the possibility of MS since you have lesions.

Hoping to hear more from everyone. While I said a few weeks ago I was happy and sad, this forum is kind of vacant but deep down I know it's a good thing. However, it sure gets lonely!

Anywho, I need a nap. But I will return eventually. I'll probably type up a longer post on Monday.