I HAVE NO ONE IN ST. LOUIS EXCEPT AN EX-BOYFRIEND WHO IS PRETTY HELPLESS HIMSELF.
MY FAMILY IS NOT SUPPORTIVE, ALTHOUGH THEY LIVE HERE.
IS ANY ONE NEARBY?
DOES ANYONE KNOW OF ANY LOCAL RESOURCES?
I'M SCARED.
BEFORE I GOT THE INTERNET I COULDN'T TALK TO ANYONE ANYMORE ABOUT MY SYMPTOMS.
NEW PEOPLE I MEET AREN'T CLOSE ENOUGH ,PLUS THEY NEVER KNEW WHAT I WAS LIKE BEFORE LYME.
I HAVE A GREAT JOB THAT I HAVE WANTED MOST OF MY LIFE AND BEFORE I CAN PROVE THAT I CAN DO IT- THIS CRAZY HERXING STARTS UP OVER SHORT ANTIBIOTIC DOSES.
I CAN'T SUPPORT MYSELF ANYMORE.
NAVIGATING THE STAIRS TO MY APARTMENT IS BECOMING HARD.
READING IS HARD.
I FEAR PEOPLE WILL THINK I'M LAZY OR SOMETHING.
BEING TOLD THAT MY LYME WAS IN MY HEAD WHEN I STILL FELT MY LEFT SIDE LED ME TO BELIEVE THAT I HAD TO DEAL WITH THE AFTERMATH.
BUT IT GOT WORSE AND WORSE-
WHAT IF I GET SO ILL THAT I FORGET TO CARE FOR THINGS AND THEN NO ONE HERE EVEN REALIZES?
Posted by Lymetoo (Member # 743) on :
I hear the fear! Sorry you are dealing with all of this!
Why are you taking Zpack? Do you have a known tick bite?? or just suspect you have lyme?
Any other history you can tell us about? How long have you been ill, have you been given any treatment for Lyme disease??
Posted by she7 (Member # 11244) on :
TAKING Z-PACK FOR RESPIRATORY INFECTION.
I WAS DIAGNOSED IN 2002-IHAD BEEN SICK FOR TWO YEARS BEFORE THAT.
IWAS DIAGNOSED IN HOUSTON- WHERE MY FRIENDS STILL LIVE. IHAD TO MOVE TO ST. LOUIS BECAUSE MY RESOURCES RAN OUT AND I THOUGHT I WOULD GET HELP FROM FAMILY.
BY THE TIME I WAS DIAGNOSED I WAS FAINTING, HAVING BLINDING MIGRAINES, LOST ABOUT 20 LBS, PAIN SHOOTING DOWN ARMS AND LEGS, SHORT OF BREATH, HEART PALPITATIONS, RASHES ALL OVER ARMS AND TORSO AND LEGS, .....COULDN'T REMEMBER MY MIDDLE NAME.
FRIENDS GOT ME TO A DOCTOR WHO PUT ME ON DOXY(STILL IN TX) 200 MG BID AND I WAS SUPPOSED TO BE STAT FOR SPINAL TAP BUT HAD TO MOVE HERE.
HERE I WAS WAITING TO SEE INF. DISEASE FOR 2 MONTHS- COULDN'T FUNCTION EVEN TO UNPACK. INFECTIOUS DISEASE HERE SENT ME TO NEUROLOGIST .
NEUROLOGIST DID LP- (PUNCTURED NERVE IN MY BACK) AND CALLED ME "HYSTERICAL" TOLD ME TO GET MORE EXERCISE AND TAKE ELAVIL AND NEURONTIN.
i SOUGHT AN ACUPUNCTURIST OUT OF THE PHONE BOOK ONE DAY WHILE IN SCREAMING PAIN(LIKE BEING ELECTROCUTED) AND FOUND SOME RELIEF.
GAVE UP ELAVIL- SOUGHT PSYCHIATRIST. WAS PUT ON VARIOUS ANTIDEPRESSANTS, ADD MEDS, AND SLEEP AIDS.
PSYCHIATRIST SUGGESTED AFTER A WHILE THAT I DIDN'T REACT WELL TO MEDICATION- TOOK ME OFF. I FIND SOME HELP WITH ANXIETY FROM PSYCH MEDS.
PSYCH SUGGESTED THAT I SEEK LYME SUPPORT GROUP(NONE HERE) AND FIND INTERNIST WHO COULD HELP MY DAY TO DAY ILLNESSES.
BY 2004 I HAD GIVEN UP ON MDS- OFTEN VISITED ER FOR RESPIRATORY PROBLEMS AND MIGRAINES. SAW ACUPUNCTURIST- TCM DOCS DONT HAVE A LYME DISEASE- I FOUND PAIN MANAGEMENT BUT LITTLE ELSE.
2004-NUMBNESS IN LEGS, LEFT HAND STARTED TO LOSE FEELING PERIPHERAL. FACE STARTED GOING NUMB AGAIN. TCM STOPPED HELPING. JOINTS FLARED UP AGAIN. MIGRAINES WORSENED, SHORTNESS OF BREATH UPON EXERTION, MUSCLE TONE CHANGED(I WAS VERY ATLETIC)LYMPHS SWELLED UP AGAIN AND AGAIN. BLADDER BEGAN TO MALFUNCTION -GOT IC DIAGNOSES AND VISITED SEVERAL SPECIALISTS.
STILL GO TO PHYSICAL THERAPY FOR BLADDER AND SEX DISFUNCTION-AFTER SEVERAL MONTHS I'VE FOUND LITTLE OR NO RELIEF, JUST BIG BILLS.
IN 2004 I BORROWED $ AND WENT BACK TO INF. DIS. WAS TOLD TO FIND INTERNIST. I DID.
IN FACT IN THE LAST 2 YEARS ALONE I HAVE SEEN: -UROLOGISTS -OB/GYNS -OB/UROLOG SURGEON -THREE INF. DISEASE -PSYCHIATRISTS -NEUROLOGISTS -EYE SPECIALISTS -ORTHOPEDISTS -PHYSICAL THERAPISTS
IHAVE HAD BLOOD TESTS FOR PROLACTIN,CANCER, THYROID, BLOOD COUNTS, ELECTROLYTES, LYME, ETC
IHAVE BEEN REPEATEDLY BOUNCED TO NEUROLOGISTS, INF. DISEASE,HOSPITAL, PSYCH., BACK TO INTERNIST.
SINCE 2004 ALONE I HAVE TAKEN THE FOLLOWING FOR MY VARIETY OF "CONDITIONS"
-DOXYCYCLINE 200MG BID -1MONTH X 2 -SEPTRA DS FOR 3 MONTHS -AMPICILLIN- 3 WEEKS -MINOCYCLINE-1 MONTH -AMOXICILLIN-10 DAYS X8 -LEVAQUIN14 DAYS X6 -MACROBID-7DAYS -ROCEFIN INJECTIONS X6 -BIAXIN 14 DAYS -I.V CEPHALOSPRIN X4 FOR 3 DAYS AT A TIME -AND SO ON......
I HAVE TAKEN A VARIETY OF ANTI DEPRESSANTS AND CURRENTLY STICK TO : -LEXAPRO 5MG IX DAILY -WELLBUTRIN XR 150MG 1X DAILY -ADDERALL 20 MG 1X DAILY -NEURONTIN 300MG DAILY -SONATA OR AMBIEN FOR SLEEP - VALIUM(WHEN ANXIETY IS BAD-RARE) -FIORINAL FOR MIGRAINES THAT WONT STOP
I RECENTLY FINISHED ANOTHER 2 WEEK COURSE OF AMOXICILLIN FOR SINUS/ RESPIRATORY(CHRONIC) AND DURING THAT TIME NOTICED NUMBNESS WORSENING AND FOG INCREASING. SAME AS THIS TIME ON Z-PACK, BUT LESS SEVERE.
DID IMENTION THAT I'VE BEEN LACTATING SINCE 2003? AND NAUSEA DAILY SINCE 2004. IVOMIT WHEN I FORGET TO TAKE MY NAUSEA MEDS.
DID IMENTION THAT I TAKE REGLAN TWO WEEKS OUT OF EACH MONTH SINCE 2004? IF NOT I CAN'T SEEM TO STOMACH FOOD. I TAKE BREAKS, B/C REGLAN HAS THIS WEIRD SIDE EFFECT OF MOUTH TWITHCING IF TAKEN TOO LONG.
ALSO BEEN ON TIGAN AS NEEDED FOR TWO YEARS. I AM SO NAUSEATED MOST DAYS THAT I DONT LEAVE HOME WITHOUT TIGAN.
LETS SEE-TESTS AND PROCEDURES:
i HAVE HAD -MRIS OF BRAIN SEVERAL TIMES -MRIS OF SHOULDERS,WRISTS, ANKLES, HIPS, CERVICAL SPINE, LUMBAR, KNEES -CAT SCANS OF BRAIN, STOMACH, MOST OTHER PARTS -X-RAYS OF WRISTS AND ANKLES,SHOULDERS AND BACK -NERVE CONDUCTION TESTS -EMGS -ELECTROCARDIOGRAMS -CHEST X-RAYS OFTEN -SOME TEST TO SEE IF I HAD A HOLEIN MY HEART -AND MORE
DID I MENTION THAT I GET PREGNANCY TESTS(EVEN IF I DONT HAVE SEX) FOR MY IRREGULAR PERIODS?
NERVE TESTS SHOWED I HAD LOST PERIPHERAL CONDUCTION IN ARMS AND LEGS(MOSTLY LEFT)
MRI SIPNE SHOWED DEGENERATION OF DISKSIN LOWER BACK (PHYSICAL THERAPY)
MRI JOINTS SHOW CARTILAGE DETERIORATED-"ARTHRITIS FROM BEING ACTIVE" -I'M 30. GIVE ME A BREAK NSAIDS PROVIDE LITTLE RELIEF.
ALSO -IFOLLOWED THE FIRST NEUROLOGISTS' ADVICE AND TOOK NSAIDS DAILY UNTIL I BEGAN TO CRAP BLOOD.
i HAD A SCOPE STUCK INTO MY BELLY TO CHECK FOR HIATAL HERNIA WHEN I WAS PUKING MYSELF TO DEATH IN 2005.
JUST HAD ANOTHER"EMERGENCY" VISIT TO INF. DISEASE -SENT BY INTERNIST- WAS TOLD I SHOULD HAVE BEEN BETTER AFTER ONE COURSE OF ANTIBIOTICS. ALSO- HE DOESNT "SUBSCRIBE TO CHRONIC LYME OR LATE LYME THEORIES" AND IF I NEED IV OR LONG TERM ANTIBIOTICS IT WOULDNT BE FROM HIM.
HE WAS BETTER THAN THE 2005 INF DISEASE THAT VISITED ME IN THE HOSPITAL- MY INTERNIST CHECKED ME IN TO HAVE ME PUT ON IV ANTIBIOTICS BY HIM.
AFTER 24 HOURS ON PLAIN IV FLUIDS HE DRIPPED ONFOR LITERALLY 2 MINUTES TO LOOK AT ME AND TELL ME "I DONT BELIEVE IN CHRONIC LYME- YOU DONT LOOK LIKE YOU HAVE LYME DISEASE ANYWAY- SO I WONT TREATYOU"
i KID YOU NOT- i HAVE WITNESSES TO THIS EVENT.
I CONTEMPLATED SUICIDE FOR A WHILE LAST YEAR, ESPECIALLY AFTER A TOY SLINGSHOT MALFUNCTIONED AND SHOT MY LEFT EYE TO PULP. (OBVIOUSLY UNRELATED- BUT DOESNT HELP)
i DIDNT WANT TO DIE- IJUST GOT OVERWHELMED WITH ALWAYS HAVING A PROBLEM BUT NEVER FINDING A SOLUTION. iT'S MADDENING.
SO -LATELY- I AM WEAK ON THE LEFT SIDE- TODAY I CANT EVEN OPEN A JAR B/C I CANT HOLD ON TO ANYTHING. ICANT FEEL MY FACE I ALWAYS FEEL LIKE I HAVE TO PEE MY JOINTS HURT. MY LEFT LEG IS GOING NUMB AND DRAGGING.
TODAY I DANCED LIGHT FOR AN HOUR. COULDNT CATCH MY BREATH
RIBS STILL HURT NECK HURTS CANT MOVEIT TO THE LEFT AND OF COURSE- I AM GLAD THAT I KEPT FOOD DOWN AT ALL.
CANT READ FOR LONG- THIS IS THE LONGEDST I'VE FOCUSED ON ANYTHING IN MONTHS
I HAVE NO SOCIAL LIFE- I CANT COMMIT TO DO ANYTHING B/C I'M TIRED OF DISAPPOINTING PEOPLE. i NEVER KNOW HOW I WILL FEEL DAY TO DAY. EXCEPT LATELY- WORSE SEEMS TO BE THE CASE.
MOST FRIENDS HERE HAVE SAID THAT THEY WANT TO HAVE FUN AND I UNDERSTAND THEM BEING INCAPABLE OF DEALING WITH THIS,
I HAVE BEEN CALLED A HYPOCHONDRIAC, DRAMATIC, SILLY, ANNOYING, AND MY FAVORITE; "CRAZY".
i DONT TALK TO THOSE PEOPLE ANYMORE.
I DON'T TELL ANY ONE HOW SICK I AM.
I HID IT FROM MY EX BOYFRIEND AS MUCH AS I COULD UNTIL I FAINTED IN FRONT OF HIM AFTER PUKING ALL DAY. HE IS THE ONLY FRIEND I HAVE RIGHT NOW THAT KNOWS WHAT'S GOING ON-
SADLY EVEN THOUGH HE HELPS ME WITH CHORES AND TAKING CARE OF MY CATS-
HE CANNOT HELP ME AT ALL EMOTIONALLY- AND CANT UNDERSTAND LYME DISEASE. i BROKE UP WITH HIM BECAUSE I THOUGHT MY SITUATION TO BE TOO MUCH FOR HIM TO COMPREHEND
I AM GLAD FOR HIS HELP, BUT I AM SOOO LONELY.
INTERNIST WOULD LIKE ME TO STAY ON DOXY FOR A YEAR. HE SAYS HE CAN WRITE IT UP LIKE ITS FOR ACNE.MAYBE IT WILL HELP JOINT PAIN BUT HE DOESNT THINK IT WILL BE ENOUGH,
SAYS HIS HANDS ARE TIED- WANTS INF DISEASE TO TREAT ME- YOU SEE THE CIRCLE?
AFTER LAST INF. DISEASE(WHICH I PRAYED AND WAITED DESPARATELY FOR) I REVISITED PSYCHIATRIST(INF. DIS, SUGGESTED IT WAS ALL IN MY HEAD)
PSYCHIATRIST SAID THAT HE CAN ONLY HELP ME TO COPE WITH THE ANXIETY AND DPRESSION OF HAVING A CHRONIC ILLNESS.
HE SAID HE IN NO WAY BELIEVES THAT I HAVE MANIFESTED THESE SYMPTOMS AS SOME SORT OF PSYCHOSOMATIC DISORDER.
IN FACT HE BELIEVES THAT MOST OF MY DEPRESSION AND ANXIETY WOULD ALLEVIATE IF I GOT PROPER TREATMENT FOR MY LYME DISEASE.
HE REFERRED ME TO MY INTERNIST.
I AM BROKE. I AM IN HUGE DEBT. ANY EXTRA MONEY GOES TO BILL COLLECTORS OR DOCTORS.
i WORKED FULL TIME 2005 LONG ENOUGH TO GET INSURANCE-(MY FAMILY HELPS ME PAY FOR THAT) BUT GOT FIRED FOR BEING UNRELIABLE(SICK TOO MUCH)
MY INSURANCE EXPIRES IN A FEW MONTHS.
i HAVE GONE OFF ALL MEDS- DONE TCM I HAVE DONE BOTH TCM AND MEDS I HAVE TAKEN THE PILL TO TRY AND REGULATE MY HORMONES. I HAVE CLEANSED AND DONE ACIDOPYLLUS OFTEN I ELIMINATED MEAT, MOST DAIRY, MOST SUGAR, WHITE FLOURS
I HAVE ENDED UP IN THE ER QUITE A BIT. IT IS EXPENSIVE. AND THEY NEVER KNOW WHAT TO DO WITH ME.
I AM SO GLAD I GOT THE INTERNET-ALTHOUGH I DON'T KNOW HOW I'LL PAY FOR IT YET!
THE DAY I SAW THAT LAST INF. DIS. I CAME HOME AND SAT THERE JUST NUMB INSIDE. I FELT HUMILIATED AND BROKEN.
HE TOLD ME I WOULD WASTEMY $ ON ANY ONE WHO"OVER-TREATED WITH ANTIBIOTICS"-TO "BEWARE OF THOSE TYPES OF DOCTORS"
hE TOLD ME I SHOULD TRY THE EAST COAST B/C"LYME JUST DOESNT OCCUR IN THE MIDWEST, OR TEXAS."
HE TOLD ME IT WAS "PSYCHOSOMATIC" AND REFUSED TO CALL MY PSYCHIATRIST, THEN AGREED BUT SAID IT WOULDN'T INFLUENCE HIM AT ALL.
HE SAID HE WOULDN'T TREAT ME AND I'D HAVE A HARD TIME FINDING ANYONE WHO WILL.
SO I CAME HOME AND SAT THERE. I CRIED FOR A MINUTE.I FELT LIKE IT WAS HOPELESS. LIKE I SAID- I THINK I BROKE INSIDE THAT DAY.
BUT I GOT ONLINE TO LOOK FOR EAST COAST DOCTORS. INSTEAD I STUMBLED ONTO THIS SITE, AND SEVERAL OTHERS. I IMMEDIATELY FELT HOPE AGAIN- MAYBE SOMEONE OUT THERE COULD HELP.
AT LEAST SOMEONE COULD RELATE.
i'M PRETTY SURE I WAS NEVER TREATED PROPERLY WITH ANTIBIOTICS. i DID TAKE A DOUBLE DOSE OF DOXY FOR TWO MONTHS IN 2002-TERRIBLE HERX THEN. SO I'M SURE ITS LYME. THEN, OF COURSE- I FELT BETTER FOR A WHILE.
i THINK STRESS CAUSED TROUBLE IN 2003-2004. AND SYMPTOMS GOT WORSE FROM THERE.
I USED TO BE ABLE TO ENJOY A NUMBER OFHOBBIES. I MODELED, ACTED, PAINTED, TOOK CLASSES AT LOCAL COLLEGE, WORKED IN CUSTOMER SERVICE- LOVED SPENDING TIME WITH FRIENDS- OFTEN MET NEW PEOPLE
I USED TO EXERCISE ALL THE TIME- TRAINING WITH WEIGHTS, DANCING, WALKING, BIKING, SWIMMING, KARATE, TENNIS,
I WAS CREATIVE AND FUN- PLANNING PARTIES AND WRITING STORIES- TAKING PICTURES.
I HAD FRIENDS-A SOCIAL LIFE- DATES-
I'M TIRED ALL THE TIME NOW- i NEVER KNOW WHEN I WILL GET DIZZY OR GET A HEADACHE. SOMETIMES I HAVE VISUAL DISTURBANCES AND SOUND MAKES MY SKIN CRAWL.
THIS MAKES THINGS DIFFICULT.
I FEAR LEAVING MY HOME- GETTING DIZZY AND A HEADACHE OR PAIN AND NEEDING TO REST BUT BEING TOO FAR AWAY.
MY FAMILY IS BEYOND FRUSTRATED WITH ME. THEY ARE IMPATIENT AND WANT ME TO HURRY UP "AND GET A NEW FULL-TIME JOB WITH BENEFITS. GET IT TOGETHER AND STOP WASTING TIME..."
AS IF I ENJOY DOING NOTHING THAT I LOVE. AS IF I AM A MOOCH- LAZY-IRRESPONSIBLE.
THEY WILL HELP ME WITH UTILITES SOMETIMES- I HAVE A DEBT WITH MY FAMILY, TOO.
I SWEAR I WAS A PRODUCTIVE, INTELLIGENT, KIND, CREATIVE, FUN LOVING PERSON BEFORE.
I AM SO TIRED OF BEING SICK.
I FEEL LIKE MY BODY DOESN'T BELONG TO ME ANYMORE.
i AM EXHAUSTED BY ALL THE INAVASIVE POKING AND PRODDING AND QUESTIONING I'VE GONE THROUGH.
I FEEL AS IF THAT'S WORN ME DOWN AS MUCH AS THE LYME.
OVER TIME I HAVE OFTEN TRICKED MYSELF INTO THINKING I HAVE THE FLU AND IT WILL GET BETTER, OR MAYBE I HAVE ANOTHER DISEASE- ONE THAT I CAN CURE OR GET TREATED FOR.
BUT i HAVE LYME DISEASE. AND I THINK THAT IT'S EASY TO SLIP THROUGH THE CRACKS AND DISAPPEAR.
I CAN'T EVEN REMEMBER MOST OF MY EXPERIENCE ALREADY.
WITHOUT MY FRIENDS IN TX PUSHING ME AND TAKING NOTES OF MY EXPERIENCE- GOING WITH ME TO THE DOCTORS-I KNOW I WOULD HAVE SLIPPED THROUGH THE CRACKS BEFORE. I FEEL SO LUCKY THAT I HAD THEM.
ESPECIALLY SINCE NOW I HAVE MY OWN NOTES ALL OVER THE PLACE AND CANT SEEM TO ORGANIZE THEM.
AND NOBODY HERE CAN TELL ME IF I FELT LIKE THIS LAST WEEK.
I BARELY MAKE IT THROUGH A FEW HOURS A WEEK LATELY BEFORE I'M EXHAUSTED OR ACHING.
EVERYDAY I PANIC FOR A SECOND AT HOW EASY IT IS FOR DOCTORS TO DISMISS MY SYMPTOMS, DISMISS ME-
UNTIL I GET SO FOGGY AND FORGETFUL THAT I DISMISS MYSELF-AND THE DOCTORS...
AND MY MOODS DAMAGE MY RELATIONSHIPS AS MUCH AS MY CONSTANT NEED TO GO HOME DOES.
UNTIL THIS DISEASE EATS ME UP ENTIRELY.
I CAN'T BELIEVE THAT THERE ISN'T MORE RESEARCH BEING DONE- THAT THE ANSWERS ARE STILL SO JUMBLED AROUND.
BUT I CAN SEE HOW DOCTORS CAN GET AWAY WITH IGNORING THIS- PATIENTS HAVE A HARD TIME CONVINCING THEIR DOCTORS TO HELP.
I WANT A SOLUTION. DESPARATELY WANT MY LIFE BACK. OR EVEN A SEMBLANCE OF MY LIFE BACK.
I AM SORRY IF THIS IS LONG AND CONFUSING. I HAVE A HARD TIME ORGANIZING MY THOUGHTS.
I AM GLAD THIS SITE EXISTS.
I FELT LIKE I WAS FADING AWAY.
THANK YOU SO MUCH FOR BEING OUT THERE.
Posted by Kendrick (Member # 10990) on :
I'm sorry that you're going through this. You should try to find a Lyme Literate MD.
Before I got sick, I was preparing to go back to school for Ph.D, working out, jogging, and playing sports. I've lost 40 pounds, mostly muscle. I plan on punching every doctor who did nothing for me once I get better(not really)... or maybe I should just write them a letter every week telling them how lazy and bad of a doctor they were.
Good Luck and keep in touch here.
Posted by TNJanet (Member # 10031) on :
Dearest She7,
Please post in Looking for a Doctor section and someone should be able to recommend a Lyme literate doctor for you to see!
Although you have been on antibiotics, it appears that you haven't been on anything long enough to eradicate Lyme or coinfections. It sounds as if you only brought out some of the infections to the surface and then they went back into hiding.
Please read the newbie links here as you can. You will find others who know exactly what you have been through.
Many of us know your story and many of us can help see you through to get to a doctor who will not shame you, but instead help get you started on the road to recovery!
I am so very sorry you are going through this now. It's terrible to be so sick at such a young age but you do need to know that there is help for you!
I hope others will post here and tell you some of their stories so you don't feel so alone.
Wishing you all the best, Janet
Posted by just don (Member # 1129) on :
She 7,
I am very sorry also,,, for your ills.
Indeed you were NOT treated long enough or STRONG enough to get rid of LYME, You need an LLMD, period, NOW!!!!
There is one named Dr. M in St. Louis area. IF that doesnt work out or he isnt taking patients,,,get to doc C. a bit west of you,,,its not THAT far,,,he will treat you,,,not tell you crap,,,and IF you can stick it out,,,you will be better,,,but you HAVE to get there first.
Go at ALL costs, sooner the better. IF you need more info you have to PM me. We cant post doctors names or locations on these boards because of real issues. Click on the icon up on same line as my name cept right of there.
You """DO HAVE HOPE""", hang in there get properly treated ,,,and regain your life. Its a long hard road,,,but dont take detours or bad turnoffs,,,take the high way to life again!!!
Everybody here can relate to your story in ONE way or another!! Stick around and socialize with a good family atmosphere.
Unfortunately everybody gets the run-around just like you got before we met here and got it under control!!! I remain--just don--
Posted by bettyg (Member # 6147) on :
she, please take OFF THE ALL CAPS, and type in LOWER case since many of us can NOT read all caps.
read your having a herx, but had to stop, and will scroll on by, SOB, since i can't read it as is. hope others can assist you. Posted by Geneal (Member # 10375) on :
Dear She 7,
What type of Lyme test did you have? What were the results?
Were you dx with Lyme? (I was dx with Post Traumatic Stress Disorder a few times)
You have to find a LLMD!!! Borrow, beg, do what you can to get the money to get there, (I am not advocating stealing), but get there asap.
Sending you healing thoughts and prayers and for guidance in the right direction.
Geneal
Posted by Michelle M (Member # 7200) on :
Hello, She.
Your story is very moving. I can hear how despairing you must feel at times.
But please DON'T.
If you sat down with an LLMD, I suspect he would have instant recognition of what you are going through.
Non lyme literate doctors are too wrapped up in denial to be of any help.
You surely haven't treated very long at all! I'm glad your doc has agreed to a year of Doxy but you'll likely need more help than that. You need to know whether you have co-infections also, through good testing with Igenex. Doxy won't help those (except for ehrlichia). Also, you need a cyst-busting drug tossed in somewhere.
If you cannot get to an LLMD, please read the ILADS treatment guidelines (in the newbie links). Maybe your doctor would consider treating you in accordance with them.
Please know that WE don't think you're crazy! And even where you are now, there is lots of hope for getting better under the treatment of a GOOD doctor.
Let us know, and post often.
Michelle
Posted by she7 (Member # 11244) on :
Ok- from now on I will type with caps off. I am typing one handed ,so redoing that whole thing would be impossible right now for me. I'm sorry for difficulty caps has caused some of you.
Thank you so much for the help and understanding. I will try to get those guidelines and take to my internist until I can see a LLMD.
If I am on antibiotics does that affect test results? I tried to wait to start doxy until I saw that last inf. dis. doc. with the hopes he would retest me or something.
Still feel so lost.
Posted by she7 (Member # 11244) on :
also - I was tested for lyme and it was positive three times, equivocal once ,neg once.
I kept the first positive result ,the equiv.,and the neg to take to docs- .
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by she7: also - I was tested for lyme and it was positive three times,
That should do it!! I sure hope you can get to the dr I mentioned in a PM.
You definitely need some HELP...ASAP! Posted by just don (Member # 1129) on :
She7,
I can guess who Lymetoo has recomended you see. CALL tommorrow,,,make the appointment,,,as there will be a wait till you get in.
Most importantly,,,GET THERE!!!! Your very life MAY depend on it!!! And yesterday wasnt too soon,,,but anytme in next month or two will work 'just fine'!!! Its a slow growing , multiplying bug getting to you!!
BUT if you dont make the appointment,,,it just adds more and more time to getting there. Geneal might not advocate that 's' thing,,but it might be the very best reason for doing so I ever heard of,,,just joking,,,cant get there while behind bars either!! BUT it does say how badly you HAVE to get there.
Post back to us by noon Monday or so how your appointment getting went,,,we are all eagerly awaiting your going,,, and,,, starting on your journey back to the real world!!(of health and happiness)
Be well -don-
Posted by mississippilyme (Member # 11205) on :
Hello She7,
I am sorry that you are sooo sick.
By the time I found out what was making me sooo sick I was broke also.
It sounds like your body may have become the toxic waste dump that mine had become.
When you take antibiotics they kill the many babacteria associated with Borreliosis. The bacteria are too large to get out of your blood. They have to decay so they will be small enough, during this process they are making toxins which also cause your body to hurt.
My head hurt so bad I could not see or function. Shortly after I started detoxing I began to feel better. I could not afford to get the good stuff at first but if you can afford it Detox Max Plus is wonderful. Here is what I used while money was scarce.
Activated charcoal tablets taken with extra virgin olive oil unpasturized, unheated honey with apple cider vinegar in water Extra vitamin C with other antioxidants
Read any information that you can get your hands on, there is some really good stuff at this site. One in paticular I read today is this:
I hope and pray that you can get help very soon. Everyone here knows that you are not crazy, I've been told the same thing (I know I'm not crazy), and I'm sure most everyone was told the same thing. Just because they do not know what is wrong doesn't make us crazy.
May God Bless you and your family who cares for you.
Sherry Posted by she7 (Member # 11244) on :
Since I last posted I have suddenly gotten an ear infection and my respiratory infection of the last 5 weeks decided to move back upwards for now. Still hurts to breathe!\
I have really lost coordination on my left side- dropping everything- can't open things in containers. Not just childproof-me proof!
So tired. Last two days I fell asleep in tjhe late morning and missed business hours.
I keep yelling at my ex when he calls. ..and he's the only one who tries to help me manage my home! Not thinking clearly, for sure.
Today I am going to call an make that appointment- I have backup alarms set just in case I actually fall asleep today.
I am so grateful for this support. Tonight someone from A support group in Missouri called me at the perfect time- I was getting stressed(high school friend died yesterday) last night- and lifted my spirits.
My birthday is Thursday.! I really hope I am not contagious(ear inf or something) so I can teach my class.It's an hour and the kids are really fun...
anyway- I keep losing track. I will check back today later after I contact that doc.
Thank you again and again and again....
Posted by mississippilyme (Member # 11205) on :
Hello She7.
Happy birthday. Hope you have found some help.
We'll keep praying for you.
Sherry Posted by she7 (Member # 11244) on :
I got in to see a doctor in Springfield...Just a few weeks from now. I have to figure out how to get money still, but I am hopeful.
I am scared after all the negative experiences I have had with doctors. I fear this one will also judge or ridicule me- so I am trying not to get too much of expectations.
Meanwhile I am messing up my job. I have a review on tuesday- the director of my department is watching me teach. I think this is due to my recent inability to remember dance steps I have known my whole life. \ I blanked out so badly that I had to give one class free time for a while last week. And I also seem to have lost inspiration to choreograph. maybe being ill has gotten me down- I don't know. But I am wooried. All I have in St. Louis is this job. I don't do anything else anymore.
I have been crying a lot lately and then getting furious at anyone around me, luckily that isn't but a few people.
My family decided to take a vacation at the time that I have my appointment. They don't take me on trips anymore- i am always "being sick or too moody to go". The few times they did take me they said I ruined their vacation and slowed them down too much. It is "depressing to be around someone who always has to be sick". I don't even tell them anymore. But they wrote it off a while ago. My entire family plans to spend the summer elsewhere this summer.
My father said he would like me to visit him in Italy but i'm "in too much debt to miss work". In 2005 he offered to take me on a trip with my sister but backed out at the last minute which ended up costing me $ I didn't have.
I wish they would help me see adoctor- but they feel they have loaned me enough $. I owe them too much already- It is close to my medical debts. I hate it.
I feel despair everyday. I am trying to stay positive- but I don't want to get out of bed anymore. Everything seems so hard to do- simple house chores and errands seem overwhelming.
I saw a psychiatrist but he wont give me any more meds he thinks they dont do much for me.
I found that theres no support group here. KC put me in contact with two people struggling here. I hope we will find more people and start something up.
I cant seem to get to the end of my thoughts anymore. my brain runs in circles- I space out- can't make descisions=- cant solve simple things.
I lost the password to this site for a while. I found and lost the paper daily. I'm taping it up by the computer.
oh yeah- I forgot to submit my hours to get paid at work and now have to wait another cycle before ui get paid. So I cant pay this months bills. Again. Whatever.
I'm supposed to go see amovie tonight but I don't want to go. I am sick of my friend the ex boyfriend.
Sorry. I am really down. I am getting sued again for unpaid medical bills -hospitals that wouldn't settle- docs that didn't treat me but sur can invest time and energy into going after all the $ I don't have.
Posted by mississippilyme (Member # 11205) on :
Hello she7,
Hope you had an enjoyable birthday.
I am overjoyed to know that you found one of the best LLMDs in the world.
You must not worry anymore. Put those old dr. bills in a box labeled "don't worry". You have an appointment with someone now who can help you.
He will know your pains and disappointments. He will not be anything like anyone you have seen before.
He has researched tick-borne diseases for years. When you leave that office you will feel like a different person.
As far as money goes, this appointment won't cost too much, probably around two-hundred. Best of all you will come out of there with the information that it takes to get you well.
Do what I do, keep on praying for this appointment to happen. I'm sure our LLMD has a direct communication line with our "Savior". The day before your appointment if you don't have all the money please just call his office and explain your situation. They are all "Angels" I am positive he won't deny your appointment.
The meds probably won't cost that much either. He started me on Doxy "it is cheap". Most of the other expense was getting rid of toxins.
Please try to think positive, I know it is hard. You will get help with this appointment.
Keep praying and posting.
I have been trying to educate myself on supplements and their healing properties. Our dr. gave me the hand-outs so they should be correct.
I will read to see what we can do for you while we wait on your appointment, and post back.
Sending you healing thoughts and prayers.
May God bless you and yours.
Get out of the despair mode and into the new healing mode. You have found the correct tools now use them as you travel on your healing journey. Leave all the other drs. and crap behind, as they are unimportant and ineffective.
People here will help you until you get help and after too.
Sherry Posted by Lymetoo (Member # 743) on :
quote:Originally posted by she7: I got in to see a doctor in Springfield...........
I am scared after all the negative experiences I have had with doctors. I fear this one will also judge or ridicule me- so I am trying not to get too much of expectations.
That will never happen with this doc!!!! Don't worry another minute!
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by mississippilyme: As far as money goes, this appointment won't cost too much, probably around two-hundred. Best of all you will come out of there with the information that it takes to get you well.
It's more than $200 now. I think it's more than $400....call his office and ask.
Posted by mississippilyme (Member # 11205) on :
Hello She7,
Whatever the cost, do as Geneal says, " do anything except steal or other wrongs" and get yourself to the dr. This is your life, it will be so nice to regain the pleasant part of living.
I hope you have called and everything is going great for you.
Keep praying and posting, I know this can work for you as it did for me. Never give up. You are about to get what it takes to start healing and living again.
Please let us know how things are progressing. I'll be praying with all my heart, as well as others I'm sure, this appointment is far too important, you must take advantage of it. You have been sick far too long. You must get your life back.
Keep thinking and speaking positive. No room in this equation for negative. Your healing process has now begun.
Praying for your health and your appointment.
Sherry
[ 09. March 2007, 12:42 PM: Message edited by: mississippilyme ]
Posted by hopeful123 (Member # 3244) on :
wishing you well as you go to your first appointment with a llmd. it will make all the difference. you'll see.
Posted by CaliforniaLyme (Member # 7136) on :
H A P P Y B E L A T E D B I R T H D A Y ! ! ! **************************************************
I hope this year you get lots better and by your birthday next year you won't even think of that ex and will have just met the person of your dreams*!*)*!)*!)!! And that this LLMD will help you and you will look back and go, "I remember when..." about this hard hard time of your life- Sincerely, Sarah
Posted by Lymetoo (Member # 743) on :
"She" is having trouble raising the money to go. No one in her family will help her.
Posted by she7 (Member # 11244) on :
Dear folks-
I made it there to springfield. I got the ex to help drive- my migraine stuff was acting monsterous.
I ended up having to teach the day I was supposed to leave- so I left a night ance I got nausea under control.
I loaded up on antinausea and went to the appt.
You are right about the angels thing.
I was having psychiatric and neuro symptoms upon arrival. even there i hid it- it is such a habit.
But what a wonderful doctor.
I found out my immune system is probably suppressed- worn out. Of course-
you guys were right! He reassured me that I am not crazy. He listened, he was kind, he treated me like a human. if nothing else i am forever grateful for this
I nheeded desparately to be treated that waay by a doctor, by a nurse. The staff was wonderful, the doctor was wonderful.
I have hope. I still dont know how I will make ends meet now. I owe family $ my bills are a mess and i have wasted so much $ on terrible doctors.
But I am so grateful that I went- that he is willing to treat me.
I cried and cried when I left. Irealized how much I have held inside, pretending to be ok. i realized that I accepted daily pain as a inevitable part of my life. i just stuffed it all in, trying to act normal.
I watched this show about animals a long time ago- when I first started losing my life to this disease. Something about how animals would leave the sick ones or avoid them- survival instinct, i guess.
Wish I could remember-- stupid lyme eating my brain...
Anyway- I decided to isolate and hide it to protect myself. Plus several people telling me i was wrong about my own body did not help.
sometimes I think people who dont have an illness like this cant face me.
I think it forces them to view their own mortality- and perhaps unconsciously they [pull away.
Sometimes I saw the pain in my friends eyes when I was in texas- how it affected them to watch me decline. I feel like this may be a reason I moved.. .. but i dont know.
Anyway- I am finally feeling things i have hidden -even from myself.
I stuffed my pain inside- I didnt even mention how much pain I am always in to the doctor. I am so used to hiding it. but he gave me suggestions to improve pain and energy. I look forward to trying.
I smacked my ex on the way home for all the stress he caused before- I was telling him how badly it had affected me , and he argued. He doesn;t get it. I feel bad about it, but he seemed alright.
i know i shouldn't go around smacking people, especially if they are my only help.!!!
Anyway. thankyou for encouraging me.
I still have a lot to digest and figure out. I cant afford all the treatment I was reccommended.
I hope everyone is doing well. thanx for all the birthday wishes! after selling my birthday presents i was feeling sorry for myself.
Posted by Lymetoo (Member # 743) on :
I am so glad you were able to get there after all!!
You're right about people almost being "afraid" of seeing us so ill. It scares them.
And I'm with you....I've always hidden how ill I was. How much pain I was in.
Take one step at a time and you'll do fine. Remember now, that you will be herxing and you won't like it.
But the only way OUT is THROUGH!
Posted by mississippilyme (Member # 11205) on :
She7,
I thought of you when I saw this and wanted to share:
I know it is a little easier now that you know for sure what is wrong.
![[group hug]](graemlins/grouphug.gif)
![[kiss]](graemlins/kissing.gif)
![[Cool]](cool.gif)
![[Wink]](wink.gif)
Here is what I used while money was scarce.![[Razz]](tongue.gif)
![[woohoo]](graemlins/woohoo.gif)
![[Smile]](smile.gif)
![[bow]](graemlins/bow.gif)