Remaining symptoms after about 3 weeks of doxycycline and 1.5 weeks of zithro (1st 2 weeks of doxy was 200 MG a day, now taking 400 MG day of doxy).
-Headache that seems to last all day -occasional stiff neck -Anxiety that flares up and seems to make it hard to breath or almost be a state of panic or doom/about to drop dead feeling -periodic dizziness -morning chills very decreased almost gone -Get hot skin but not as often or as intense as before.
*Heart palps are not as often not even 1 a day and when they happen they are not as intense of a THUD, they are more contained and don't always force a cough now.
Symptoms GONE or almost GONE: -Cramping in arch of foot!!!! -Joint pain -Muscle twitches have descreased in intensity and frequency, are almost completely gone -Sleep apnea attack, haven't had one in a while -Hand cramping -Horrible chest/rib pain is gone, if it happens it is just so so so slight. -Overall flu feeling is gone -Anxiety to the point of insanity and afraid to get off my couch is gone... -No more difficulty speaking
would love to hear people's thoughts. I'm very encouraged. Starting to feel ALMOST normal again with fingers very crossed.
Good karma to all who read this.
Posted by Clint31 (Member # 16420) on :
Also had a very very deep but dry rasp cough and chest irritation. This has completely gone away as well. Had no idea lyme could cause a cough like that.
Posted by Clint31 (Member # 16420) on :
bump. my god my head hurts. Posted by Parisa (Member # 10526) on :
I hope you get some relief soon!
Posted by bettyg (Member # 6147) on :
clint, i'm glad you are seeing progress for yourself.
have you got a symptoms log? when things started and when they end ... it's valuable later on.
many have terrible headaches!! have you been to a chiropractor for body adjustments?
best wishes, and hang in there. YOU ARE GOING TO HIT BOTTOM before you really see the difference and it's going to take LOTS OF TIME .... not a SHORT period of time.
lyme will teach you patience! Posted by Keebler (Member # 12673) on :
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Seeing a podiatrist and getting a custom made pair of orthodics may help your feet. They should be hard based and not pliable. Walking barefoot is really hard on the arch.
you may also need a foot splint to wear at night. helps me a lot.
and magnesium can help your feet and your headache.
Hope things look up.
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Posted by kpa (Member # 12079) on :
I am really glad to hear that some of your symptoms are gone.
It is important to continue treatment til all symptoms are gone.
Have you been tested for co-infections?
These need to be treated separately. Leading drs recommend a rotation through different abx to address the different bacteria that could be there. Also, Babesia is a common co-infection that is protozoal (sp?). Abx won't touch it, folks usually take Mepron or Malarone for it.
Bartonella is often related to serious anxiety and foot pain.
Anyway, I encourage you to get tested for co-infections so that you are sure what all needs to be addressed.
Don't be in a hurry to stop treatment til you are well.
I do think it is great that you are responding so well to treatment so far!
Take Care, kpa
Posted by Clint31 (Member # 16420) on :
Well those 2nd set of symptoms I listed are all things that are better.
By all indications I am getting better and responding to treatment, right? That is what it seems to me.
I have been treating the lyme with doxy and the bartonella (if I even have it) with ziphro
Posted by sixgoofykids (Member # 11141) on :
Yes, it sounds as if you are responding to treatment and getting better.
Don't stop until you are symptom free for two months .... the fact that you still have symptoms shows that it's still there.
Posted by djf2005 (Member # 11449) on :
sounds like bartonella
good luck
keep treating
Posted by Marcie (Member # 10070) on :
When I first started abx for lyme a lot of my syptoms got better, but some stayed just like yours.
These symptoms contiuned until I finally got treted for co-infections. I am still under treatment for babesia. It takes a lot time to finally be symptom free.
I would talk to your doctor about trying babesia meds. It seems like so many people I talk to have coinfections.
Posted by Clint31 (Member # 16420) on :
But what symptoms of babesia do I have? I wouldn't have seen the marked improvement if I wasn't going to get better would I? If I just continue with my current treatment won't I be just fine?
Posted by sixgoofykids (Member # 11141) on :
It's common to see improvement on a treatment, then plateau and need to change protocols.
Posted by Clint31 (Member # 16420) on :
I should have said: "I feel completely normal again except for _________" then listed the symptoms I'm still feeling.
Isn't it just possible that a few more weeks of the current ABx will be just the trick?
Posted by lpkayak (Member # 5230) on :
clint-i upset you in the pm...i'm sorry.
but i am glad these others are now bringing to your attention the importance of really getting rid of it NOW.
don't stop abx too soon.
check for coinfections.
be sure dose is correct.
when you use abx other things happen and you have to learn about detox, parasites, yeast etc.
i think some of the others feel similar to me. we are happy you are getting some results but we are concerned if you stop treatment or don't do the right treatment, you will end up chronic like many of us. you don't want that. we don't want that for you. so we are encouraging you to be sure to treat enough.
the reason i said i thought you needed a lyme literate doc (llmd) is you had/have ALOT of symptoms. chances are very good it is Bb and coinfections. it is impossible for you to learn everything you need to know about fighting it soon enough-so you need a good llmd to guide you thru the process.
with your symptoms i think "a few more weeks" of abx may not be enough. this disease is very hard to treat-it's good you caught it early, it's good you're using 400mg doxy a day...but that is just the beginning.
i just wish not one more person has to get chronic lyme. and what you do now may make the difference.
take care. remember-i'm not a doc. just someone who has dealt with this since early 80's
Posted by sixgoofykids (Member # 11141) on :
quote:Originally posted by Clint31: I should have said: "I feel completely normal again except for _________" then listed the symptoms I'm still feeling.
Isn't it just possible that a few more weeks of the current ABx will be just the trick?
Both my answers would remain the same even if the wording had been different.
At one point, all I had was ONE symptom.
Posted by CherylSue (Member # 13077) on :
My guess would be you still have Bart (foot pain and anxiety) and babesia (headaches.) You'll have to go through a few more antibiotics for these infections. My LLMD has a rotating protocol for these. He says you can stop abx two months symptom free.
CherylSue
Posted by Clint31 (Member # 16420) on :
Thanks for the replies. A nice boardmember is going to mail me the coinfection test kit. Not sure what to do from there but I will figure it out.
I am going to continue my treatment until August 14th and if I don't make marked progress by then I'll try and see a LLMD.
Posted by barbarame (Member # 16423) on :
Just remember that some have a 2 month waiting. So not to disrupt your tx. schedule now then cancel later. It can't hurt.
barb
Posted by njlymemom (Member # 15088) on :
i am not sure what you would do with a coinfection test kit either
since testing is not all that accurate and lyme and co's are a clinical dx
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