Topic: Medically speaking ... HOW THE HECK ARE YA?
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
TC forgive ya aaaaaaaaaaaaaaaaaaaaaaaaaa.
Okay
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
rosesisland2000
Frequent Contributor (5K+ posts)
Member # 2001
posted
Glad to see you are back, Tincup!!!
I'm doing great. But, got bit by three (3) ticks over the weekend while at the cabin in the woods where I originally got Lyme.
After three years on abx, I've finally gotten into a remission...if that is what we should call it.
My local great doctor who allowed three years of abx is going to the Fed pen next month for wheelchair fraud. I am currently searching for another very understanding doctor as my local doc.
I haven't seen Dr. C in almost two years.
Anyway, just checking in here every now and again. Busy with the life I've been missing for over 6 years now.
Muscle wasting or thinning tongue wrinkles and scalloping swallowing issues (hard to swallow mucus in my throat, can eat and drink ok). TMJ (although the pain has lessened recently and increase during Biccillin Shots). Twitches everywhere (especially after i use the muscles).
If i could get rid of my tongue and swallowing problem i can hang with this a lot easier. I am very social so this tongue fatigue sucks for me.
Posts: 167 | From Los Angeles | Registered: Jan 2006
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posted
Hey Tincup, thought you were on a honeymoon with Mel! Saw him last Monday, on TV that is.
It's me Jane who used to live on Maui, in Hawaii. 12 docs (mostly ducks) and 5 states later, we quit living in Submarine (Notor home) and stopped in Lee, Illinois near our kids for last winter. We were going between Michigan, no ticks in Michigan I've heard! and Arizona for 3 years.
Question- I have possibly found a LLMD or Lyme literate Rhumatologist and in hopes he can do a Western Blot, should I go on or off abx before test?
MY present rhumatologist just did some tests at my request and called to say I have a low immune system. DUH having my 6th anniversary of dance w/ lyme tick in northern Michigan, all I could say is no kidding. I knew that with out tests.
Do you think low immune system will compromise tests?
I've been doing kind of what you have, on and off abx, had im pennicilin for 8 weeks, lyme came back 1&1/2 month later.That was two years ago.
Gradually have gotten stronger, had several bad relapses and if I stay off more than 3 weeks I get sick again.
Had Bowen test last spring and tested positive. Found a Nures practioner in Scottsdale, Az. who treats chronic disease and she did teat and sent to Bowen.
Still fighting, won't quit!
Hope ou are surviving battle aganst ticks. what I want to know is why can't we get publicity as HIV does. All I did was get bitten by a bug!
Hope things a re great on the Moon, Jane swanson
Posts: 137 | From somonauk , Illinois | Registered: May 2001
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henson2
Frequent Contributor (1K+ posts)
Member # 463
posted
TIn Cup!!!!! I"m so happy to see you!!!
I have missed you so much!!!
I'm not able to catch up on all your messages yet but can't wait to read your news. It has not been the same here without you.
I'm having a really rough time. Have developed some adrenal problems, new onset allergies, digestive, very difficult fatigue again.... have been on a treatment break to settle things and will have to go back on. Thinking of trying the herbal route; I am in the middle of discussing what to do.
Encouragement and hopefulness needed.
It sure does lift my spirits to see you back here.
Hugs hugs hugs!!!!
Posts: 1067 | From East Coast | Registered: Dec 2000
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TheCrimeOfLyme
Frequent Contributor (1K+ posts)
Member # 4019
posted
Im doing MUCH better. After two years of non stop antibiotics and only gaining about 50 percent of my life back, I quit them cold turkey in November of 2004.
Its been 17 months and I am now 60-90 on bad days and about damn near 100 percent on good days.
I take bicillin about once a month. Why? Its expensive and I take it only when I flare- which I still do. As you, that may be odd to do it that way,
but its what works for me.
Odd- stopped taking antibiotics and put myself into darn near remission.
Graduated collge, got engaged. yada yada
-------------------- You want your life back? Take it. Posts: 3169 | From Greensburg, Pennsylvania | Registered: Jun 2003
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Back from rally. VERY tired after long trip.
So nice to read new posts since I left! Can't wait to chat.
Will start fresh tomorrow and reply the best I can. Thanks to all for posting. YOU lifted MY spirits!
You wonderful duck head! I just read what you wrote now! Thank you so much. You have been so kind to me! Thats wondeful you saw an eagle flying around, and you thought of little ol' me?
I'm honored!
To be part bird you know!
Thank you!
We held down the fort while you were away!
It wasn't easy, and so many times I wanted to just yell and scream WHERE ARE THE OLDIES?
You know the old timers who have been here since the beginning! There are so many new people it's hard to keep up!
It's a full time job I tell you!
Not complaining, just happy to see Lymenet suddenly take a turn back in a positive direction!
Things were going down the tubes for awhile there!
So many emails, i know it! You should see my inbox in the morning...whew! We should set up a 1800 Lyme HELP hotline! take turns staffing the thing!
Anyway! Tincup when you can, shoot me an email [email protected] I have something for you and only you!
posted
Well now all is well with the board. It just wasn't the same without you Tinnie. Welcome back and congrats on the wedding.
I'm making progress. Finishing up month 22 of abx. Theralac has made my life easier. Still using podi patches almost every night. I'd buy Epsom Salt by the truckload if I could store it!
Haven't lost my car in a year now although coming back from the Lyme rally, did forget to make a turn near my house. It took a while to even realize I was in the wrong place and lost. That's why I keep plenty of maps in the car!
It was really great to meet you at the rally. I'm going to work really hard at getting better so I can do more to shake up the powers that be. You are are an inspiration in getting involved. hatsnscarfs
Posts: 956 | From MA | Registered: Nov 2004
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posted
Tinny!!! I'm so glad to see you here! You have been so missed around here, especially by yours truly. I know you've been busy with all of your Lyme activism (which I really admire you for),but we've missed you just the same.
Hope you are doing well. My daughter is on IV claforan and doing pretty well now. Had a few PICC problems and is now on a port-a-cath which is so much better! She doesn't have as much pain, but she still runs a constant fever and has a lot of fatique and a few neuro symptoms. I was diagnosed in December (we've both had positive WB's) and am on Bicillin injections. After much herxing, I am having some better days. Hope your days are all wonderful!! Welcome Back!!!!! Suzy I sent a support letter to Dr. J (and his lawyer) in Charlotte. Wish I could be there for the hearings, but have a conflict with the dates.
Posts: 260 | From Virginia | Registered: Jul 2004
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livinlyme
Frequent Contributor (1K+ posts)
Member # 3773
posted
HEY HEY TC glad to see you came back!!! I dont have time to post on here much ....things are still very, very rough.. but I'm trying to turn my life around.. I still have not found a LLMD who will accept united health care here in florida..better than the state assistance (that is not designed to HELP anyone) (rather it is a JOKE) I'm barely holding on.. my symptoms are flaring again after being off ABX for almost a year since we moved...
My eldest (the one who had heart involvement) has been taking the ABX that were the remains of our years of treatment only because we are all afraid the condition that killed his father will snatch his lfie from him if we stop..
Here in FLorida they do not appear to be taking this disease as seriously as they do in PA... I regret the move for that reason alone.. as for our lives, we are trying to put them back on track and struggling at that but I am sticking to it and not giving up on it ....
I now have high BP along with the never ending herniated discs which I'm on fentynal patches for that and this is not helping anymore they are talking about a ANS stimulator and I am going to talk with a specialist for that today! I am 75% relapsed on my Lyme symptoms.. and my youngest well I can only hope we find help real soon.. cause we have no more AB's to treat any of us...
we are still questioning where we will be living.. but i think as i have been told we should close on the house on the 20th of this month but I have been hearing that for a year now...everyone here is pretty depressed over the waiting and not knowing for sure.. hugs to you girl you keep up the GOOD WORK!!!
-------------------- "Hatred paralyzes life; love releases it. Hatred confuses life; love harmonizes it. Hatred darkens life; love illuminates it." Posts: 1389 | From who knows, who cares, but somewhere over the rainbow | Registered: Mar 2003
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Carol B
Unregistered
posted
Just following orders here folks- Tincup asked me to post that her phone lines, Lymenet and computer have been down for a couple of days
and she plans to be back on line after an appointment with her LLMD tomorrow.
I can't figure how she sent me the email though???
Anyway- she hopes to be connected with lymenet up and running for her tomorow.
Starphoenix
Frequent Contributor (1K+ posts)
Member # 2402
posted
Good to "see" you, TinCup! I've often wondered how you were doing.
I'm having continual setbacks, and I'm very depressed. Now, I'm confined to the house for the most part because driving is even a problem. Still don't have appropriate treatment. Too many obstacles, too many complexities.
Sorry this couldn't be more uplifting. I've hardly been on the board lately, first time in weeks I'd say.
-------------------- Learning to love, and loving to learn. Posts: 1318 | From Shohola, PA | Registered: Apr 2002
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by Carol B: I can't figure how she sent me the email though???
Magic?
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Well!
It is incredibly wonderful to see so many people here!!! I am grinning ear to ear. I do see we still have some folks in need of help.. so sorry.. but we can work on it!
It does seem each time I said I'd be right back.. something happens. Yesterday the road crew was out on the road cutting and clearing ditches. They accidentally cut the main phone line in the process.. and I've been without phones and/or computer access till now.
I am trying to catch up and visit with everyone.. but so much going on... YIKES!
Do know I am LOVING your messages and will continue to TRY to get back at ya.. one at a time. Have whopper headache right now and can't think to save me. Headed to bed! Will write soon.. now that they fixed the phone lines!
And do note.. I just caught a glimpse of a post where SOMEONE.. or two or three people are talking about me... and making FUN of me.
Have no fear. I WILL get them back for that!
Just wait my little pretty.. I'll get you and your little dog too!
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
I hope you wake feeling better TC!
It's almost time for you to be in charge of brains again.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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lymemomtooo
Frequent Contributor (1K+ posts)
Member # 5396
posted
Somehow I missed your reply to me..Sorry...Thanks for taking the time..
You are welcome to stop by any time you are in my neck of the woods.
Recently I have been too busy to look at this post..Some other posts have been a little bit interesting to say the least..
I hope you are better. I am sure you are probably suffering from to much fun and frolic. Ha.
If we have time, I plan to read "Miss Overlooked"'s stories at the support group meeting..If she is there and still in one piece, perhaps she can do a live rendition.
Posts: 2360 | From SE PA | Registered: Mar 2004
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Lymetutu.. Is that You you??
Wow little one with pants drooping down..
Rifing?
OH MY!!!
Good for you!!!
Now.. I KNOW I will be sorry I asked.. but what is a mangosteen rock? Sounds like some sort of Missouri dance thing you made up!
Kind of a cross between a Missouri mule square dance and a moon walk?
posted
LMT said If we have time, I plan to read "Miss Overlooked"'s stories at the support group meeting..If she is there and still in one piece, perhaps she can do a live rendition.
I'll do that only if you are eating a sub at the time ! Ha !
I've kind of crashed today, but I hope to reCHARGE soon-as long as TC is not reloading.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
JR JR JR JR JR.....
Oh my.. Tis JR in the flesh! Good to see you old friend!!! I miss YOU.. and I must admit.. your humor too!!!
I don't know who your doctor is.. but feel free to tell them Tincup said you have Babesiosis.
No.. I don't have a medical degree.. but I did just get a big bowl of chocolate ice cream.. with chocolate syrup.. and to make it "good for me"... I put two handfuls of walnuts on top!
Actually.. Babesiosis is MUCH more common that we thought. For example.. I only had VERY low.. "borderline" Babs tests.. and neg. Fish too. But boy oh boy.. I had it bad. I do believe I had the same exact readings as you did. A low IGG.. and that was it the first time around.
BUT... the proof was in the pudding. I got on Mepron and Zith after 16 years of being sick... and ZOWIE! What a herx!!!
JUST as Dr. B described in his literature. It hit on the 4th day.. and I thought I was going to DIE! And I was only doing 1/2 doses!!!! Then it hit HARD again on the 30th day.. and after the first two "wanna die" herxes.. it was less each time... and days in between were MUCH better!!!!
You asked what meds turned me around?? That was it. Treating the Babesia was the best improvement I had ever seen.
I had treated for Lyme... and more Lyme.. and more Lyme over the years and did have improvement when treating.. but as soon as I heard the word Babesia.. I started wondering.
I had to go through TWO STINKING years before I could get anyone to even test me for it.. and then .. after numerous ducks saying .. "You can't have babesiosis.. we don't have it in Maryland.. blah blah blah...""
I went to the chiropractor and wrote up the orders and they signed it. Three labs eventually tested me positive.. but only low positive.
But when treatment was going on.. it made me show the best improvement yet. I always felt "better" after Lyme treatment.. but never quite right... and still had bad days.
The head exploding thing.. and pressure in your head that you are feeling.. in MY opinion.. is Babesiosis.
That and muscle pain.. sweats.. on/off dry sort of cough... appetite problems.. and other things. Oh yeah.. I always showed blood in urine with it.. for YEAR I ALWAYS had blood in the urine for no reason. Once treated for Babs.. it went away!
You don't need to exhibit all those symptoms and signs.. or the same ones as I did.. but the headach you describe...
Well to me it sounds like babesia.
Oh NO!!! My ice cream is melting.. melting.. melting...
I wish you luck on the IV stuff. I've never done that one.. so do give us a report back. OK?
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Cbb cbb cbb cbb cbb cbb........
You are a sugar pie ya know.
I am grinning just to see your name here!!! But SOME of the grin MIGHT be the ice cream too? HA!
And what you said about you've had Lyme so long you don't know how you are suppose to feel at that age...
Well.. I was thinking about that same exact thing the other day. I have NO clue what a "normal" person my age should feel like... since I was 29 years old!!!!
Everyone said when you hit 30 you go down hill. Boy were they right!!! Especially if you get Lymed then!!!
On the flip side... I guess "normal people" don't know how it feels to have Lyme.
They don't know what they are missing! Do they? HA!
Oh sweet one.. it is so nice to see you!!! Wish I could toss hugs at ya and post them here.. but I am not a fancy pants yet on the computer.. so just try and close yer eyes and feel one from me!
OH WAIT!!! I think it worked!
I just remembered.. yeah THAT is a big day when THAT happens.. HA!
They have little smily faces of other kinds here now.
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey there Lost City Agent...
Do tell me. When you say 27.. that is your AGE.. not the number of years you've had Lyme? I HOPE!!!
Not sure.. but I truely hope you mean 27 years OLD!!!
Since you posted.. and sorry it is hard to catch up when I fall so far bee hind..
But have you increased the doxy yet as directed? If so.. I do hope it is going better for you. DO let your doc know if it gets too rough.. ok?
And be thankful for mild herxes!!!!! Some can be wicked!
By the way... maybe you can share with me and others who don't know what Lhermitte's Sign is??
Have you done any posts on it? If not.. I, for one, would love to see one. The more we know the better we can help others.
And it is none of my business.. but were you tested for Bartonella? Just wondering.
It is good to see you have dropped some of the symptoms from your list. I guess it is about time for a party? I'll bring the ice cream!
Is there anything we can do for you? I see you are from CT? I think?? Darn.. with all the pages to this post.. I am getting like you...
LOST!
I THINK you listed CT. Anyhow.. did you get to the rally? Are you going to the hearing? Let us know. We could really use you there! We MUST support our doctors.. or we WILL lose them.
Then we will all be up the creek with no ice cream! NOT a good thought!
Anyhow.. I hope you continue to improve and feel MUCH better soon! Let me know who you are when you come to the hearing for Dr. J. OK?
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
HeatherKiss.. Oh good!
quote:Originally posted by HEATHERKISS: Hi Tincup,
You probably don't remember me but we did write in each others posts a few times before you left.
HEATHERKISS!!!!
Oh my goodness. There probably wasn't ONE post you wrote that I didn't read!!! Of course I remember you!!! I can't believe you would even think otherwise! You post so many good and very thoughtful things!!!
This board WOULD be sorrowful if you weren't here to brighten up our days!
And you always post beautiful and/or appropriate pictures to make me smile. After all that time.. and all your posts.. I feel like we have known each other for YEARS my dear!!!
Good to know you are feeling better too! Are things coming together for you?
Will you be attending the hearing for Dr. J? Either one?
I hope so... and when you do.. PLEASE let me meet you.. ok? I know I missed a number of folks at the rally and I am so disappointed about it.
BUT.. I look forward to seeing you and others soon!
My ice cream is more like chocolate walnut soup.. so I am going to take a quick break to suck it down and try a few more replies tonight before I hit the hay.
Soooooooooooooo good to see you!!!!
And I'll NEVER forget you.. ever. Well, unless the Lyme brain REALLY gets me in the
Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Beverly...
What can I say?
You've made my day.. for sure. Feels like old times being here with you on the board at night. We spent many many nights together here.. and many nights it was just the two of us.. answering posts so everyone would get answers in the morning.. and all of it done before we went to bed.
For those who don't know.. Beverly has been a life saver here for so many... including me! Many times folks have needed answers and links and help.. and Beverly was always here.. faithfully.. providing the BEST of the BEST in order to help others. Many times I'd holler out for her to get ME info to help me with whatever.. and always.. never complaining.. she would.
Talk about a gem.. she is one of the brightest ever!
Good to hear you are doing well my friend. And I hope you family is better also.
Oops.. I am starting to sway in the seat.. and it ain't because I've been hitting the bottle.. it's cause I am tired.
But before I lay me down to sleep... I want to say this..
Do you remember the movie.. The Wizard of OZ?
Do you remember what Dorothy said.. near the end of the movie... while standing there getting ready to leave in the big balloon? She spoke to all the friends she made.. one at a time.. and then she spoke to the Scarecrow.
I want you to remember what she said to the scare crow.. because that is what I would have said to you... if I left the Emerald City.
Night night Scarecrow.
You make me smile and I've sure missed you!!! But you knew that.. didn't you?
posted
You stay up too late TC. Your're just lucky they still deliver pizza in the wee hours of the morning-to augment your pretzels and mustard diet.
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
True True True...
quote:Originally posted by trueblue: Did I get skipped over? *
Or are you saving some sort of special teasing advice for me?
Well dear.. NO NO... you didn't get skipped over that night.
BUT..
You sure ARE being skipped over tonight! HA!
My ice cream is gone.. so I am hitting the hay! I can only last as long as the ice cream does.
PLUS.. Me tinks YOU might be one of the ones jumping up and down on my head at that other post. Am I right?
I haven't been there tonight due to time limits.. but I WILL be checking it. Sooooooooo.. be warned. If you've joined in the TC bash party there..
BETTER WATCH OUT GOOFBALL!
I'll get ya!
Nighty night!
Whew... I FINALLY was able to respond to the whole first page of posters! One down.. two pages to go!
But do note- I have read the posts on the 2nd and 3rd pages.. and have enjoyed them all! I'll keep trying to catch up with everyone... soon.
Just today got unpacked from the Rally!!! And as I did.. I had to do a switch-a-roo and I had to pack to head SOUTH this time.. to Dr. Jem's hearing!
Who will be there? Or.. better try this...
Who WON'T be there! I hope THAT list is shorter!!!
charlie
Frequent Contributor (1K+ posts)
Member # 25
posted
AWWW TC I missed your rentry from lunar orbit and splashdown.
Petunia and I are OK but my foot got all swollen up and my knee hurt and I said Hmmmm....relapse. It got worse , crutches and me of all people a real grump.
Turns out I've got a bad tooth that has to come out which likely causes all the woes, not TBDs
I call it molaria
Charlie & Jenny who've been missing you
Posts: 2804 | From Texas | Registered: Oct 2000
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minoucat
Frequent Contributor (1K+ posts)
Member # 5175
posted
Generally OK, sx pretty much gone except for this bloody unending fatigue. Did have some side effects from abx, as you see below. Makes driving difficult, but on the bright side we haven't lost any chickens to skunks lately. Nice to have you back, TC.
-------------------- ********************* RECIDITE, PLEBES! Gero rem imperialem! (Stand aside plebians! I am on imperial business.)
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Glad to see you doing better these days. And I am glad you found a abx regimen that works for you. I think its the that we feel better that counts not how we get to feeling better.
I've been on and off the board for awhile - so you might remember me from years ago.
I would fall off the board for awhile cuz complications blah blah blah - I could barely walk again and whatnot.
Anyway, I am still disabled but I am much better then I was a year ago.
I am confident that someday I will be well enough to pursue my intended career as an art teacher.
Oh ye and once and awhile I can actually work on my art again. I havent been able to do that in years.
And recently I even baked and decorated cupcakes and had a birthday party for my little boy Twilight (my cat).
trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
quote:Originally posted by Tincup: True True True...
Well dear.. NO NO... you didn't get skipped over that night.
BUT..
You sure ARE being skipped over tonight! HA!
PLUS.. Me tinks YOU might be one of the ones jumping up and down on my head at that other post. Am I right?
I haven't been there tonight due to time limits.. but I WILL be checking it. Sooooooooo.. be warned. If you've joined in the TC bash party there..
BETTER WATCH OUT GOOFBALL!
I'll get ya!
Nighty night!
Nope, not me, I don't bash.
I just went and read the other thread (to make sure ) and will admit to laughing, really hard.
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Otherwise... on the medical spectrum it appears I have someone willing to tackle the Babs amongst a bazillion other things.
I'm alternating between beaming with happiness(or is that confusion?) and tears of... boy, I don't even know what they are tears of... hopefulness?
Now, if I can just figure out what I'm supposed to do first.
Your post to JR is just what I needed...
quote:Originally posted by Tincup:
Treating the Babesia was the best improvement I had ever seen.
I had treated for Lyme... and more Lyme.. and more Lyme over the years and did have improvement when treating..
... but only low positive.
But when treatment was going on.. it made me show the best improvement yet. I always felt "better" after Lyme treatment.. but never quite right... and still had bad days.
The head exploding thing.. and pressure in your head that you are feeling.. in MY opinion.. is Babesiosis.
That and muscle pain.. sweats.. on/off dry sort of cough... appetite problems.. and other things. Oh yeah.. I always showed blood in urine with it.. for YEAR I ALWAYS had blood in the urine for no reason. Once treated for Babs.. it went away!
You don't need to exhibit all those symptoms and signs.. or the same ones as I did.. but the headach you describe...
Well to me it sounds like babesia.
Sounds to me, like me, right down to the blood in the urine.
Ha, test after test after test for everything, and anything, and still a refusal to treat Babs. Had I known then, what I know now.
So all these years later I am finally getting a chance to change it.
TC, thank you for posting that.
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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trueblue
Frequent Contributor (1K+ posts)
Member # 7348
posted
Ooops...
Just did that try to edit your own post and accidentally quote yourself thingy. Pardon me. (insert blushing smilie here)
-------------------- more light, more love more truth and more innovation Posts: 3783 | From somewhere other than here | Registered: May 2005
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