How's everyone doing-care to update?

[Buttons2]

Hi Lymies, just wondering how you are all doing with your treatments & dealing with the critters.

Blimey, you are to be commended for staying on here! Appreciate all the news you take the time to share with everyone here.

I'm guessing most of you are active on other sites since this one is not seeing much activity.

As you know I never got a diagnosis (in fact gave up trying a few months ago). I'm doing pretty good actually,almost afraid to say that since it's always one step forward & 2-3 back!

I still have the myoclonic jerks, and now I'm having new rather horrific pains. I've noticed my eyes are better (in fact am thinking of getting new glasses), I no longer can even recall the last dizzy spell or vertigo, no longer have the feeling of water running down my legs,no foot drop for awhile,stomach is better,no sharp head pains,my brain function is much improved,and I have high energy days just like my old self! Fatique is still a huge concern,I just give in to it & wait for a better day.....

The spider wound is staying the same, 1 1/2 yrs ago I was told it was a malignant form of rare tumor! No abesses (sp) or whatever for a long time now.....for those of you not familiar with my story-it all began with a spider bite on my foot 8+yrs ago. Certainly not your typical spider bite when it stays "active" this many years!:rolleyes:

Biggest improvement has been what I call the clearing of my brain,I realize I can think normal now. Still have huge difficulty in getting motivated but perhaps spring will help that?

I have not taken any herbs (cat's claw,sarsparilla,etc) for many weeks now. Maybe that has helped with the stomach issues?

Hope to hear from some of you, you are all in my prayers & thoughts for steady improvement with this horrid disease!

Take care,Buttons

[Luvmycat]

Hi, Buttons 2....

I'm doing pretty good. I've been on antibiotics for three years and a month. I am going to go off of them for a trial period of one month starting on 3/14/07 and will see my Lyme specialist on 4/16. Hopefully, things will be good. If I notice a recurrence of symptoms during this time, I'm to resume the minocycline.

My Lyme specialist is writing a book on Lyme treatment which should be out this summer, I believe. It includes alternatives beyond antibiotics. I'll let you know when it's out. Maybe you'd like a copy. It sounds like you're doing better and I'm glad!

My Lyme specialist recommended a supplement called Antaxanthin which is a powerful antioxidant for the eyes and said it has helped many with dim vision, etc. due to Lyme. He said it has to be of superior quality, though, in order to work. He is on the cutting edge of treatment and always gives me good info when I visit with him.

Carol

The cat who is the reason for my screen name of Luvmycat passed away on 2/21/07. He (Monty) was 15 years old and I loved him so much. Life just isn't the same w/o him. :(

[blimeyitslymie]

Hey Buttons,

Glad to hear you are doing so well! I am making no improvements against this little beast. My immune system is so compromised that I keep picking up all kinds of nasty things. In the past six months I have had salmonella, tape worm, round worm and toxoplasmosis (and I don't own a cat); that's in addition to pneumonia, EBV and other co-infections I've had over the past year. The side effects of the medications I'm taking to kill the parasites add insult to injury. I have had to put my ABX on hold from all the gastro problems.

I am struggling to keep a positive attitude, while I raise my two kids and am in the process of moving. My husband is now working 500 miles away in the town which we will relocate to, and is home on weekends only, so I've had very little support. I take naps when I can and try to put the kids to sleep by 8:30, so that I can be asleep by 8:35. I am really exhausted, my joints, neck and muscles ache, and the headaches are blinding at times.

Thanks for the encouragement about posting the news articles. I feel that by helping educate folks there's at least some purpose to all of the suffering I am enduring.

Carol, sorry to hear about your cat. Pets are a wonderful source of comfort. I hope some sweet and spunky kitty will cross paths with you; while you can't replace Monty, I'm sure you can share all the love you have with a new little critter.

B -

[Buttons2]

Carol, my sympathy on loss of your cat. I had a cat named Jake that went through many,many weird experiences with me, had him for about 12 yrs. Just gone one day-coyotes? Took me a long time to "get over" the grief. Monty is up there playing with my Jake right now I bet!

Good luck when you go off the meds, 3+ years is a long time eh? I'll certainly be interested in reading your doc's book when it's available. Everyone needs as much help as possible!

Blimey, you amaze me! You're such a fighter or I figure you'd be dead by now! How did you get that toxo...... stuff if it's only passed by cats? Interesting.....

Blimey, you just keep hanging in there, you deserve to be well & your day will come. I cannot imagine all the stress of packing,moving,etc. How old are your kids? Assume they are youngsters if you put them to bed? Hope you have some nice people in your life to help you! Good luck with the move & try to look forward to spring,new home,etc.

Later, Buttons

[2mag]

hi every one from aka lvboj -- lost my sign on so here i am as mag

good to see you all on the board.

i am up and down- now i am fighting bartonella brainfog.
i am over the babesia

blimy so sorry to hear of all your other problems- what a fight 0- huh!

buttons - - i got the myoclonus back too
i had stopped the herbs and everything came back

luv keep us posted on the book
maybe you can have your own chapter

mag

[timaca]

Hi all~ Nice to see everyone! (Although I'm sure we would all rather not have lyme!)

I FINALLY got over my C. difficile of 11 months! :eek: I hope that never comes back!

I did some hyperbaric dives (40) that improved my stamina a lot. Then I took a break, did 2 more dives, had a herx and lost the stamina! :confused: I've been doing 2 dives every 2 weeks (for the last few weeks), for I do get a significant herx, so I believe HBOT does kill off the lyme. I can honestly say that the last 3 days I've been feeling significantly better. I can only hope it lasts! I'm also on IM bicillin, and trying to add in some minocycline...without getting C. diff back again!

2mag~ What are you doing to fight bartonella?

Blimey~ You're in my thoughts and prayers with all you are going through. If you have a spiritual bent then check out Osteen's sermons at www.joelosteen.com. He is very upbeat and positive. I listen to them when I need a pick me up. You can move the silver button forward until you are 30 minutes into the program...that's when he starts to talk.

Luvmycat~ Are you symptom free now? Good luck going off the antibiotics!! Is minocycline the only thing that you are on? I'm trying to get on that now, and hoping the C. difficile doesn't come back. I am sorry for the passing of your cat. I once had a cat named Oscar....a siamese cat that, as a kitten, bossed around two dogs that were much larger than him! :p

Buttons~ It sounds like you are improving! That is great! Thanks for starting this thread!

Hang in there everyone! Timaca

[blimeyitslymie]

Hi Everyone,

Thanks for the warm wishes. T - I'll check that URL, thanks. B - I have a 13 y.o. son with autism and a 9 y.o. daughter. Thankfully, they're at an age where they can help me out ... grateful that they are both early risers, as they go to bed early as well.

Boy with our combined experiences we could write one heck of a book. When we get the energy ... let's all think of titles ...

Like mine could be entitled, "I was a really athletic, hip chick sixteen years ago before Lyme Disease and it's associated co-infections ate away at all the vestiges of my former self". OK, that's a bit long winded :D ... anyone else have a good title?

T- Could you tell us more about hyperbaric dives? I really don't know what they are. Thanks.

[timaca]

Blimey~ I've already started my book. It's not specifically about lyme however, but does cover it to some degree. I can't say anymore about it for it is a surprise. ;)

As far as hyperbaric dives, it would be best to read the website at www.hbotoday.com They have good info on hyperbaric and lyme.

Timaca

[RuthHinWV]

Hi Gang!!! I'm glad to see some new posts here; I have been on one other site, because, as you said, there hasn't been much going on here.

Well, the best news is I finally found a doctor who is only 45 minutes from my home as opposed to 3 hours. This is the first time since 2003 I can actually drive to the LLMD myself & my husband doesn't have to take the day off from work to help with the drive.

This new LLMD has done a ton of bloodwork; she's very interested in getting the most current data on me to create her own history. Since I've been on abx since 2003, June I think, I finally had a positive WB including CDC standards. My first WB was equivocal. She has also run tests for other TB infections; those were all neg. This LLMD is quite unusual as LLMD's go, because she too is plagued with the disease as well as her young son. She truely understands what I'm dealing with!!

She put me on blood pressure meds, Lyme brain can't remember the name, but as it turns out, those meds are helping bring my pressure down. The high BP I had was causing my potassium levels to rise above normal which sent her into a panic. I've been stuck more in these past 4 months than a pin cushion!!:eek: Finally I had a normal BP & my potassium levels came into normal range.

I'm currently doing the Tetracycline regime. I've asked for this with my past LLMD & he just ignored me. I'm seeing positive results using 1,500 mg/day & hope this helps bring an end to this horrid disease!!!

I was working, I'm a florist, but several things came up & I stopped. Now I'm just a sit at home wife & mom. :rolleyes: However; this being at home all the time, while boring me to death, is probably better for me. I'm not physically exhausted every day like I was.

I sure hope all of you are doing well & hope we start getting more posts when folks realize the site is back up & running.

Carol, good to "see" you!!! I'm sorry for the passing of your cat. I lost my beloved dog, Scottie, last year & it was very hard for quite a while. I still have one, Annie, but she's just not Scottie; he was a smart dog with personality plus!!! Both my dogs are/were Yorkies.

I love this LLMD Carol; passing her name on is a great thing to do. While she has her hands full with Lyme patients, she's not turning any away at this time. She's quite a lady; I like her very much. As busy as she is & as tired as she has to be; she gives her patients as much of 100% as she can!!!!

Ruth H in WV:)

[blondehart]

((Carol)) so sorry about your cat.


I am doing better...stronger and with intermittent pain. I find using Move free (OTC glucosomine chondroitin) helps, as does my hottub.

I'm trying oil pulling....has anyone tried this?? I use a neti pot for sinus problems and thought this ayurevedic technique might help w/my aches and pains.

[lymebytes]

Hi Luvmycat. It is good you are finished with treatment. Were you treated until you were symptom free plus at least two months longer?

I am so sorry about Monty. My cat cat Max passed away last year and he was 19. He was my best friend, and I still miss him. I understand how you feel. I think when people go through illness like we do, we become even closer to our pets. Monty will always be in your heart. My heart goes out to you.

[2mag]

hi timaca,


well i started with more herbs
sarsasparilla, coptis, resvatrol, olive leaf and a slew of supplements

My LLMD started me on an abx but I got extremely ill with it
more than a herx

how are you all doing

2mag

[blimeyitslymie]

Hello people,

Well, I can't believe I have survived this far ... just three weeks to go until we move. We sold our home and have bought a new one 500 miles away; I have survived single parenting (my husband just gets home on weekends from his new job...since February) -- God bless all single parents -- and I have been slowly packing, taking care of all last minute details, getting the kids registered for school, etc.

Unsurprisingly, I have been feeling horrible. Really in major flare. So, my LLMD took blood to see if arthritis, severe gall bladder problems and fatigue flare were caused by anything new...

Guess what? My IgM came back positive for LYME! Using the local lab and meeting CDC criteria!!! I tell you, it just doesn't end. She wanted me to start IV antibiotics again, but I just can't do it before I move. It really wipes me out.

Well, at least I know why I've been feeling so crummy. I get down on my knees (ok I pretend to get on my knees cause they are so arthritic) and thank the spirits of the Universe that I get through each day and can get out of bed each morning.

How's everyone else doing??????

Keep smiling and keep on keeping on.

Blimey:eek:

[blondehart]

I am doing better than I have for the past 2 years. I am going to acupuncture weekly, taking Chinese herbs (Ren Shen Jian Pi Wan), going for cranio sacral therapy, and taking it slow. I am avoiding sugar (have been cheating just recently) but overall, I am so much stronger and I have almost no pain. Over the past two years, I was diagnosed w/lyme disease after facial paralysis, epstein-barr virus and mono, an enlarged spleen, painful joints and body, and crippling fatigue. After 2 sessions w/the acupuncturist, I felt like a new person. I am so happy.