posted
I'm new to this forum but I wanted to thank all of you for the support I felt as I read (as a guest) some of your posts last night. It's one of the very few times I've actually felt like someone understands implicitly what Lyme is actually about. I woke up this morning feeling a bit better and more hopeful, and I'm so grateful.. Thank You.
I have a couple of questions that I thought you could help me with. I am exquisitely sensitive to ALL medications and allergic to some: 1- anyone allergic to penicillin? 2- have you done iv abx with this allergy? 3- how much does it hurt/herx? 4- am I going to survive this?
weight issues: 5- anyone with severe weight loss/can't gain weight?
cardio: 6- anyone with low blood pressure and/or orthostatic hypotension?
rest: 7- anyone with exhaustion AND insomnia?
I didn't see a place for a new person to put their history--> bitten: riding horses in Montauk sick: 18 years + treated: almost 3 years condition: worn out misdiagnosed for 15 years: priceless$
Thank you again.
Posts: 11 | From NYC | Registered: Aug 2007
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rest: 7- anyone with exhaustion AND insomnia? VERY common!!
Glad you found us!! Don't be a stranger! Post often and share the love!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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Geneal
Frequent Contributor (5K+ posts)
Member # 10375
posted
I don't have the allergy to meds issue, but for the longest time
I have had significant weight loss. Just now starting to put on weight.
I think this is due to the cortef I am on for adrenal fatigue-which was causing
Pretty bad hypotension in me, especially when standing.
I am constantly exhausted, but find I am unable to fall asleep.
Welcome to the board.
Hang in there.
Hugs,
Geneal
Posts: 6250 | From Louisiana | Registered: Oct 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi Grace,
Are you seeing a llmd? There are other antibiotics other than penicillin that can treat lyme.
For example, I have started on low-dose minocycline, and am working my way up to the standard treatment for lyme, which in the literature is 200mg/day (100mg in the AM, 100mg in the PM).
Sorry to hear how long you have been ill! But allergies to penicillin, to my knowledge, should not prevent you from getting treatment, as there are other types of abx that treat lyme. Like minocycline.
Have you addressed possible co-infections like babesia and bartonella? Ticks out in Long Island can carry several co-infections.
Best wishes to you. I have gained about 15 pounds over the last couple of years I was ill, but that has more to do with less exercise!
Posts: 2557 | From home | Registered: Aug 2006
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posted
Welcome! You came to the right place for sure! I have only been here about a week now and the support is so incredible.
The education is incredible as well.
I recommend you register. When you do they will send you 61 pages of information with links included to help your understanding and education. It is priceless!!!
I have been misdiagnosed for 8 years myself. It has been the worst 8 years physically and emotionally I have ever endured. I cant imagine another 10. My heart goes out to you
I have had the hardest time with weight. In the first 1-2 years after being bitten, I went from a 5/6 to a 0. I am only 5 2 and being 98# is scary!
I have managed to go back up to a 2-4 and maintain that only with Boosts and Ensures. I still flucutate with flares bad!
As for surviving this - if you and I have survived this long inspite of everything we have endured (I know we are the only ones either!) then we are survivors and we dont give up that easy!
You have the strenght to get through this and with the support and love you will find here, even if you dont get it the way you want it from those around you, you too can make it through this....I know I will! and you are no longer alone!!!!
Hang in there!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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posted
I meant to type -"I know we ARENT the only ones either!!
-------------------- Seeking renewed health & vitality. --------------------------------- Do not take anything I say as medical advice - I am NOT a dr! Posts: 830 | From TN | Registered: Aug 2007
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
I have a couple of questions that I thought you could help me with. I am exquisitely sensitive to ALL medications and allergic to some:
1- anyone allergic to penicillin?
***********my Mom*)!!!! but she doesn't have Lyme
2- have you done iv abx with this allergy?
*****I've done IV but not allergic- it saved my life!!!
3- how much does it hurt/herx?
******************IV itself did not hurt at all, herxing can be rough but I was always glad when I herxed bad because it meant major improvement was cominG!!
4- am I going to survive this?
*********************none of us ultimately survive life but with appropriate treatment and no comps your life span should be normal in my estimation (but I am not a psychic nor a doctor*)!
weight issues: 5- anyone with severe weight loss/can't gain weight?
*******************I did, had this horrible chronic nausea and then choking problems, scared me so much when I could eat I overdid it for a little while
cardio: 6- anyone with low blood pressure and/or orthostatic hypotension?
*******most of the people on this board- but I have opposite, I have High bp since getting sick. Low bp is often associated with babesbiosis, on most symptom lists for it...
rest: 7- anyone with exhaustion AND insomnia?
USED TO HAVE THAT- it sucked!!!
Welcome again, hope you stick around*)!! Sincerely,
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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bettyg
Unregistered
posted
Grace, welcome, I just sent you my 62 pages if newbie links, advise, symptoms, tests, disability, much more, and TREEPATROL'S archive link of over 1000 sites of good lyme info!
CJ, so glad you are being helped from them; thanks for wonderful compliment! Betty
quote:Originally posted by grace7227:
1- anyone allergic to penicillin? YES, ME! We just make sure the meds have NO PENICILLIN IN THEM.
2- have you done iv abx with this allergy? no
3- how much does it hurt/herx? HERXes can be very painful, but remember this! HERXES MEAN THE SPIROCHETE ARE BEING KILLED OFF; that's what we all want to very much.
4- am I going to survive this? I've had chronic lyme for 37.5 years; 34 yrs. misdiagnosed; 3 years of on/off treatment. I AM A SURVIVOR!
weight issues: 5- anyone with severe weight loss/can't gain weight? i gain weight!
cardio: 6- anyone with low blood pressure and/or orthostatic hypotension? not yet
rest: 7- anyone with exhaustion AND insomnia? ME! also, have you had a SLEEP STUDY TEST DONE FOR SLEEP APNEA? this proved i have apnea but most importantly, showed i do NOT GET ANY DELTA 4 SLEEP WHATSOEVER! no wonder i'm tired/exhausted all the time.
since being on supplements after 20 months of pulsed antibiotics, i've never had the extensive fatigue i now have daily!
I didn't see a place for a new person to put their history-->
grace, you could EDIT MY PROFILE, put all that in YOUR SIGNATURE LINE, IF YOU CHOSE TO. Betty
bitten: riding horses in Montauk sick: 18 years + treated: almost 3 years condition: worn out misdiagnosed for 15 years: priceless$
quote:1- anyone allergic to penicillin? 2- have you done iv abx with this allergy?
They say only about 10% of people allergic to pencillin are allergic to cephalosporins like rocephin. (I assume that's what you mean - not IV penicillin?)
I'm penicillin-allergic (not anaphylaxis though, just skin sx) and was able to do IV rocephin - BUT I got allergy tested for rocephin first. You can have your LLMD prescribe a small vial of rocephin or other cephalosporin & then bring it to an allergist to test you. First step is to call an allergist and ask exactly what they'd need.
Hope this helps, hang in there...
Posts: 621 | From US | Registered: Jun 2006
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
Hey Grace...
Welcome to Lyme Net!
Seems like you are getting a lot of good information here and I am glad you posted.
If you don't mind.. I would like to break in and address this post to TuTu. Yeah.. the one with the droopy drawers! She's always been one sandwich short of a picnic... but we love her anyhow. And don't tell her I said that.. ok?
Yo! Tu...
You said..
"2- have you done iv abx with this allergy?
That would be dangerous."
Ok.. either you read this wrong.. or I read it wrong.
Your answer is .. well.. how do I say this nicely... I'm laughing now... well it is, uh uh... not right! HA!
HEY! Better than saying I'm not right!
I think Grace could take IV antibiotics if she is allergic to Pennicillin.
As long as it isn't that drug or a relative of it.
Of course... I may have read the question wrong .. or I could actually BE wrong.. (HA) ... so you tell me.
Wanna edit your answer?
Or.. Plan B.
Tell me to mind my own business and then tell me to take a long walk off a short pier?
Ball is in YOUR court sweetheart!
And PLEASE pull up those britches and stop showing yourself to the whole darn world!
posted
Thank you everyone for such thoughtful responses!
- I did register on the lymenet board. - Already signed the IDSA petition a few days ago.
- I do have an llmd, 3 years now. Also, other dr's that support my protocol who are also llmd's.
- Tried minocycline for two weeks / 50 mg every three days- the herx and allergic reaction were so severe had to stop. I take 2 other abx but had to start on tiny tiny doses due to herxing- it took nearly 3 years to get to an adult dosage. Malarone was similar. Took months to get to an adult dose. I herx immediately.
- Co-infections are there, they show up in weird cycles. My cat, B, has bartonella and is FIV+. My other two cats, K & P, were also FIV+, K contracted the bart and subsequently died from complications. P died from an inoperable brain tumor. B has had two major cycles of zithro. As I understand it, she will never get rid of it. ? That's what I was told.. (She is actually doing fine tho--)
- I'm 5'10" and now weigh 120#, before all this, about 130#. The worst was 110# for about a year or so at the onset.
- Ortho Hypo-- anyone taking midodrine? Again, I'm on tiny doses but it keeps me going- not sure about any side effects- yet.
- I will check out the sleep apnea test. Delta 4's.. hmm..
- I will check on the rocephin and re-test the allergies.
I'd like to offer one suggestion for women with PMS--> Tylenol PMS. I cannot live with out this. I think it reduces pressure in the brain, but I'm not a doctor. Hope this can help someone out there with difficult PMS. (actually- i find it to be effective pre, during and post as needed!)
You are all amazing and a comfort. Thanks for such a warm welcome and all the help. And yes CaliforniaLyme, I think I will stick around! xo
Betty- got the email, will read. thank you.
Posts: 11 | From NYC | Registered: Aug 2007
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posted
OK, Tinny....My britches are up... ooops...down again...sorry....ooops.... hold on just a minute. I'll be back shortly... [get it? ]
OK>>>> Maybe I read it wrong, or maybe newbie Gracie said it wrong...but then, I COULD be WRONG!!!
She asked me if she could do IV abx with an allergy.....WEll....NO....that would be dangerous to feed abx into an IV line if you're allergic to them....RIGHT???
So, WHO'S CONFUSED HERE??
HI GRACE!! Don't mind Tinny and I.....We just like to argue with each other and call each other names....Like CONEHEAD!!! That's Tinny's real name!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
I associate weight loss with babesia, because that is what it did to me. After successful treatment, I regained the weight. Have also heard that bartonella can cause GI problems, presumably could lead to weight loss if food disagrees with you.
How was it determined that you were allergic to penicillin? I thought I was for years, was tested by allergist.....not. Sometimes people have a reaction to penicillin drugs when used for lyme that is actually herx, misinterpreted as allergy. So, testing would be in order if you really need to take bicillin, for instance. There is also a desensitization procedure, but not sure it is worth it since there are other drugs to treat lyme.
Posts: 8430 | From Not available | Registered: Oct 2000
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
hi sweetie, welcome to chaos, er, the lyme board...
i developed an allergic reaction to penicillin after many years. my eyes swelled shut and all, so that's out for me.
i've had some kind of reaction to most of the meds except flagyl and biaxin but can't find a doc to give them to me, so am going it on my own.
i've had a problem with weight gain -- dang...
iv -- no doctor will even talk about it.
have you been tested for co-infections? got any little red dots on arms and legs? coughing, etc.
bettyg has a ton of good information.
i am so very sorry you have this.
keep researching and doing searches on the medical part of this board. practically every question you may have has already been asked.
remember "there is no stupid question."
hang in there. we're here for you....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
| IP: Logged |
quote:Originally posted by grace7227: I'm new to this forum but I wanted to thank all of you for the support I felt as I read (as a guest) some of your posts last night. It's one of the very few times I've actually felt like someone understands implicitly what Lyme is actually about. I woke up this morning feeling a bit better and more hopeful, and I'm so grateful.. Thank You.
I have a couple of questions that I thought you could help me with. I am exquisitely sensitive to ALL medications and allergic to some: 1- anyone allergic to penicillin? 2- have you done iv abx with this allergy? 3- how much does it hurt/herx? 4- am I going to survive this?
weight issues: 5- anyone with severe weight loss/can't gain weight?
cardio: 6- anyone with low blood pressure and/or orthostatic hypotension?
rest: 7- anyone with exhaustion AND insomnia?
I didn't see a place for a new person to put their history--> bitten: riding horses in Montauk sick: 18 years + treated: almost 3 years condition: worn out misdiagnosed for 15 years: priceless$
Thank you again.
-------------------- marti Posts: 4 | From New Canaan, CT | Registered: Aug 2007
| IP: Logged |
posted
I got on board last night too, and just knowing that I'm not going crazy, that people understand what I feel, is really comforting and somehow makes it less confusing.
I can't imagine what it must be like to be fighting this for so long. I'm so sorry.
weight issues: 5- anyone with severe weight loss/can't gain weight?
----I have definitely been losing weight just in the past several months.
cardio: 6- anyone with low blood pressure and/or orthostatic hypotension?
-----my blood pressure was 120 over something just three weeks ago and it's now 90 over 60.
rest: 7- anyone with exhaustion AND insomnia?
-----I think the worst part of all of this is the relentless exhaustion and fatique. I don't have insomnia; I sleep hard as a rock, but even then it might as well be for nothing.
On a side note: I have also experienced choking almost every night if not several times throughout the course... It's horribly frightening and quite intense. Breathing is actually a problem until I eat a piece of bread or something. GERD?
Is there anything you do to help the fatigue?
-------------------- marti Posts: 4 | From New Canaan, CT | Registered: Aug 2007
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randibear
Honored Contributor (10K+ posts)
Member # 11290
posted
marti, the best thing is just to force yourself to keep going.
if you lay down, it just gets worse and worse.
if i am at least up and active, no matter the pain level, i think it helps.
but i stay tired, sooo tired. i use 1.5 mg of melatonin to help me sleep. i can sleep for 8 hours and wake up exhausted.
maybe others can help ya out here, but, yawn, i' just too pooped right now. it's 7:15 here in texas, and i'm done in....
-------------------- do not look back when the only course is forward Posts: 12262 | From texas | Registered: Mar 2007
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posted
Lou- yes, I'd been tested after the mino episode 2004- I am ultra sensitive/allergic. But many years ago I had allergic reactions to penicillin, felt like I had fleas head to toe with the itching. (not a herx itch either, herx itches are different) De-sensitization may be in order but I will see after the next round of allergy tests.
Marti- thank you for your concern. I agree that this site is wonderful. Finding it felt like the day I was diagnosed: relieved, validated, and humbled. And mostly that I'm finding a way home, a way back to myself which was lost due to the lyme. The big bonus here of course are all these great people who share their experiences, knowledge and time for the good of everyone.
I don't know about choking when sleeping-- maybe a muscle spasm in your throat? Akin to hiccups? I saw a discussion about hiccups on this forum you may want to check out. As far as the fatigue.. I just go. I don't have the option not to. It is very difficult. I honestly don't know how I am doing what I do. Bettyg recm'd a sleep apnea test. Maybe that would help you too? Also, cardio: check into midodrine with your dr to maybe raise your blood pressure. ?
Randibear- thanks for the welcome. You sound like you don't have an llmd-- ? How come? I hope you find one in your area, this is too difficult to go it alone like that. Oh my. Can the board help you with that?
I do have red marks- and weird rashes, etc. Initial treatment caused coughing too- lots of icky weird white phelm. (sorry)
Thanks everyone-- I feel lucky to have found you.
[ I may post a new topic, but for now, is there something up with lyme and chocolate? ]
Posts: 11 | From NYC | Registered: Aug 2007
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