To make a long story short as possible. I was diagnosed with Lyme Disease in 1995.
In 1995 I had the bullseye rash and everything and my test came back positive for Lyme. Was treated for 30 days with amoxicillin and I was "Cured"
In 2007 I took a test again for Lyme Disease cause I felt fatigued all the time and felt neccessary to do so.
It came back positive. I saw Infectious Disease. Said it would always show that I have Lyme disease even tho I don't have it anymore. Just because I had it back in 1995. Said it was probably fibromyalgia.
Three months ago I was having terrible pain all throughout my body so i decided to get tested and it came back positive this time. Instead of going to infectious disease I seen an LLMD, Dr. S.
I saw him two weeks ago and he put me on 400mg of dioxycylone and gave me 5-500mg vicodin. He also did a DNA test for Lyme and Co infections.
I saw him today (just now)! He said all my test came back negative. I asked him about chronic lyme disease and he said he didn't believe in it.
He said I could be suffering from the damage Lyme Disease caused me back in 1995. The doctor was not Iliad or whatever its called.
Before I had Lyme disease in 1995 i was athletic, played tons of sports, exercised, etc. After 1995 I got into drugs which i still to this day blame myself for, for self medicating myself because i was really suffering from Lyme Disease.
I quit drugs all together last summer and I guess I am now feeling what I was self medicating... my Lyme Disease. Now everyone thinks im crazy or a drug addict.
IF I DON'T HAVE LYME DISEASE WHAT THE HELL IS WRONG WITH ME???? SOMEBODY PLEASE HELP! HAS ANYONE BEEN IN A SIMILAR SITUATION AS I AM? I SEE A PAIN SPECIALIST ON THE 27TH BUT I NOT CONCERNED ABOUT THAT AS MUCH AS I AM MY DISEASE.
I HAVE NIGHT SWEATS, I AM FATIGUED ALL THE TIME, I HAVE FUNGUS ON MY HANDS, FEET, CROTCH ETC., I HAVE EXTREME ANXIETY, COPD, EMPYSEMA, ACID REFLUX GERD, INSOMNIA, SLEEP ALL THE TIME, IN PAIN ALL THROUGHOUT MY BODY, HAVE TROUBLE WALKING, HAVE TROUBLE JUST GETTING AROUND IN GENERAL.
IF THERE IS ANYONE OUT THERE WHO CAN HELP. PLEASE I BEG OF YOU! I FEEL LIKE IM DYING! IF I GO TO THE EMERGENCY ROOM ONE MORE TIME THEY ARE JUST GONNA PUT ME IN THE NUT HOUSE!!!
[ 08-04-2009, 06:47 PM: Message edited by: aubsdaddy ]
Posted by Lymetoo (Member # 743) on :
Dr S said he didn't believe in chronic Lyme???? What's the matter with that man!!!????
You're wasting valuable time. Not really your fault, but you've seen two drs who are clueless about Lyme....obviously!!
The ID duck was just that .. a duck!! Please go read Dr C's WB explanation! Are you willing to sit around and get worse...take the FM diagnosis and just get sicker and sicker???
I was dxd with fibromyalgia 29 yrs ago .. WRONG .. it was Lyme all along and way before that!
Now I've been successfully treated and have been off abx for almost 5 yrs.
You can get there too!
PS... You most likely have candida/yeast .. as per the fungus stuff. It often goes hand in hand with Lyme.
Posted by aubsdaddy (Member # 21128) on :
SO WHAT SHOULD I DO THEN? WHAT KIND OF DOCTOR DO I NEED TO SEE? SHOULD I GO TO ST. MARY'S MEDICAL CENTER WHERE THEY WILL ADMIT ME TO INFECTIOUS DISEASE? HOW DO I GET BETTER? WHERE DO I FIND THE RIGHT DOCTOR?
Posted by xoxoxox (Member # 18778) on :
Hi Aubsdaddy You're not crazy. We've all been where you are now, questioning what could be wrong if the doctors tell you the problem isn't Lyme.
Will you be going to an LLMD (Lyme-Literate Medical Doctor)?
By now, you've probably read about the poor testing and the controversy surrounding Chronic Lyme, correct? For me, things began to get better once I realized Chronic Lyme was the missing piece of the puzzle and went to an LLMD. You recognize that there is really nothing traditional doctors can do for you and going to doctor after doctor was just a waste of time. Plus, they often make you feel worse emotionally or crazy.
If you go to the pain specialist, avoid any steroid therapy. It is known to exacerbate Lyme. Last year, I too went for pain management and had two steroid epidurals when it seemed like I had back problems. That was a huge mistake!
What kind of pain are you in? Joint? Nerve?
Posted by Lymetoo (Member # 743) on :
Hey Aubs.. I know you're frantic, but please take off the all CAPS!
You do NOT want to go near another Infectious Disease dr .. you will get more of the same!!!
I'll PM you and see if I can help you find a dr.
Posted by Lymetoo (Member # 743) on :
I don't think the Dr. S you saw was an LLMD! By definition, LLMD's believe in chronic Lyme.
You need to post under seeking doctors on this board to find a doctor near you.
You also should check out www.ilads.org Posted by gemofnj (Member # 15551) on :
i think you should really see a different lyme literate doctor if you are not comfortable.
the emergency is hopeless and not a good source for treatment long term.
go to 'seeking a doctor' at the beginning of this page for good input on doctors in your area.
ps.. you could have even been bitten again it may not even be 'chronic lyme.'
Posted by linky123 (Member # 19974) on :
Find an llmd through the links above, and get an appt. as soon as possible.
A true llmd will understand your symptoms and will be able to treat you.
It sounds like the guy you saw didn't have a clue.
It's probably best not to waste anymore time or $ on him.
This site is a great resource for finding a good llmd.
Some, if not most of us have to travel a few hours or more to see a good llmd.
It is well worth it.
Best of luck and keep us posted.
Linky
Posted by aubsdaddy (Member # 21128) on :
Sorry about the caps everyone! Im just so upset after i got back from my LLMD today and said i should see a psychiatrist! What a butthole!
I went to this medical center near my house and they were going to admit me before to infectious disease. judging by what everyone wrote that is not a good idea.
i am poor and do not have a lot of money. i am in a lot of pain and I am trying to save up money again to see another LLMD.
Should I go to the medical center to see what they have to say and to see if they can help treat me with Lyme? Im in so much pain and i dont know what to do!!!
Posted by Lymetoo (Member # 743) on :
They won't help you at any medical centers. Only thing you could try is to go in asking for pain meds, but I don't think they'll do it.
Can you go to Urgent Care or a family dr and get help for pain until you can find an LLMD??
Which bands were positive on your test?
Posted by aubsdaddy (Member # 21128) on :
No my family doctor doesn't believe in pain meds. The only place i found pain medicine was at the emergency room.
I went three times at local hospital... I think if I go one more time they are gonna think im a drug seeker
But there is this medical center that i was saying that was going to keep me overnight a week ago but i decided not to cause i was seeing the LLMD I emailed you about. and they released me with oxycodone.
i can't take oxycodone cause i take 6mg of xanax a day and puts a crush on my liver and i wind up throwing up. iv diluaded is what they will give me and i will have to stay overnight until i can see infectous disease the next day.
im thinking about going. they tested me for lyme before in 2007 in my original post and were the ones that said i should see a rhemotologist for fibermyalgia.
I hate pain medicine but its the only thing that keeps me doing my normal activities for the day and enjoy life again.
should i go lymetutu?
Posted by aubsdaddy (Member # 21128) on :
O by the way what is urgent care and where can i find one?
Posted by Lymetoo (Member # 743) on :
WEll, I hate to discourage you, but 95% of Inf Disease drs do NOT believe in chronic Lyme.... and the testing labs they use at hospitals are not sensitive enough to pick up the Lyme.
So you are stuck trying to convince a dr who doesn't believe in Lyme to treat you on a negative test!!
Urgent Care is another word for Walk-in Clinic... got one near you??
Posted by aubsdaddy (Member # 21128) on :
im not sure. you know of any in bucks county, pa? i never heard of a walk in clinic before and would they be open now?
Posted by JamesNYC (Member # 15793) on :
That Dr you saw was NOT A LLMD!!
If he says he is, we should blacklist him for being a charlatan.
You need to read Cure Unknown, Inside the Lyme Epidemic, by Pam Weintraub and/or see the documentary Under Our Skin (netflix has it).
You'll have a better understanding of what you've run into.
BTW, you could have EASILY been bitten again by a tick, reinfected, and not known it. Only 30-40% of the tick bites have the rash.
How does that Dr KNOW you weren't reinfected? Ticks won't bite the same host twice???
Good luck,
James
Posted by Pinelady (Member # 18524) on :
Get a copy of your test results and find yourself a
LLMD recommended here. Many docs tell patients
these are neg. when in fact there are critical
markers that should not be dismissed. These guys
will steer you straight. I would bet a lot of
your pain is coming from thyroid deficiency. It
can really cripple you up and with Lyme is hard to treat. Prayers.
Posted by aubsdaddy (Member # 21128) on :
Went to the medical center tonite and was treated with 2cc of dilauded and eased my pain for the night so i can actually get some sleep.
gave me a script for 5- 50mg fentenol patches too. if you live near bucks county,pa and are in a lot of pain pm me and i will tell you the name of the doctor i seen and the medical center i went to.
hopefully these will last until the 27th when i am finally seen for pain managment. i finally found one and got an appointment.
i don't know if i can post the hospital that has a pain management center (outpatient) and is the only one in Pennsylvania who treats chronic lyme disease but if you want to know pm me and i will be happy to tell you.
they accept welfare and all other insurances too. hopefully pain management will get me through until i can save up and see an LLMD. Thank you all for you help tonight.
People with Lyme are the strongest people in the world. You are all my heros especially you Lymetoo... if it wasn't for you and everyone here I would not have a clue.
Thank you for keeping these site alive and god bless you all for helping others. You dedicate your time to help others and I think that is a saint in my book (lymetoo).
As i get better and get on the right track I will also be helping others just like you do. You are a great person and you should know that!!!
"Im not attached to your world, nothing heals, nothing grows. Its a great big white world and we are drained of our colors" (marilyn manson)
Posted by Stefan (Member # 19150) on :
Hi Aubsdaddy!
It could be something else than Lyme.
CFIDS can be from several infections. Intracellular bacteria, viruses, parasites, fungi.
Mycoplasma, Chlamydia pneumoniae, bartonella, rickettsia, Q.fever, brucella - just to name a few....
you mught wanna have a look at www.cpnhelp.org Did you felt better with ABX?
Do you have GI Issues?
Best regards
COINFECTIONS: A SYNOPSIS Compiled By: Melanie Reber Babesiosis Explanation: Protozoa that invade, infect, and kill the red blood cells Symptoms: Fatigue, night sweats, fever, chills, weakness, weight loss, nausea, abdominal pain, diarrhea, cough, shortness of breath, headache, neck and back stiffness, dark urine or blood in urine Treatment: Atovaquone (Mepron) plus Azithromycin (Zithromax), Clindamycin and oral Quinine Other: Alternative treatment may include Riamet or Artemisinin Bartonella Explanation: Bartonella spp. bacterium Symptoms: Fever, chills, headache and severe pain in the tibia, weight loss, sore throat, papular or angiomatous rash Treatment: Erythromycin, plus a Fluoroquinolone or Rifampin Ehrlichiosis (HGE and HME) Explanation: Rickettsiae that infect the white blood cells Symptoms: Anemia, fever, chills, headache, muscle pain, rigors, gastrointestinal symptoms, anorexia, fatigue Treatment: Doxycycline, Rifampin Rocky Mountain spotted feveri Explanation: Rickettsia rickettsii parasite that invades the cells lining the heart and blood vessels Symptoms: High fever, severe headache (especially behind the eyes), maculopapular skin rash Treatment: Tetracycline, Doxycycline, or Chloramphenicol Colorado Tick Fever Explanation: Reovirus that lodges inside the cells Symptoms: High fever, chills, severe muscle aches, back pain, headache (especially behind the eyes), light sensitivities, nausea, vomiting, diarrhea Treatment: No antiviral therapy is available Other: Aspirin Relapsing Fever Explanation: Borrelia hermsii spirochete Symptoms: High fever, sudden chills, eye inflammationi, coughing, jaundice, petechial rash Treatment: Tetracycline, Doxycycline, or Chloramphenicol Tularemia Explanation: Francisella tularensis bacterium Symptoms: Painful and swollen lymph nodes, fever, chills, fatigue Treatment: Tetracycline, Chloramphenicol Powassan encephalitisi Explanation: Flavivirus that invades and infects the brain Symptoms: Fever, headache, pain behind the eyes, light sensitivity, muscle weakness, seizures, paralysis, brain inflammation Treatment: No effective treatment Tick Paralysis Explanation: A toxic reaction to saliva from female ticks Symptoms: Paralysis begins in legs and spreads throughout the body within hours Treatment: Recovery is rapid following the removal of the tick Mycoplasma Explanation: A genus of small bacteria which lack cell walls. M. fermentans, M. pneumoniae, M. penetrans, M. hominis and M. genetalium Symptoms: Fatigue, headaches, muscle pain and soreness, nausea, gastrointestinal problems, joint pain and soreness, lymph node pain, cognitive problems, depression, breathing problems and other signs and symptoms Treatment: Slow-growing mycoplasmal infections are not rapidly susceptible to antibioticsi. Doxycycline, Minocycline, Ciprofloxacin, Azithromycin, and Clarithromycin may be used.
Posted by aubsdaddy (Member # 21128) on :
Ty Stefan,
i Was test for bartonella, barbesisois and ehrli... something done pcr/dna. i was on 400mg of dioxycylone at the time. could the antibiotics i was on the day of the test have anything to do with a pcr/dna test even for the lime and the three coinfections i was test for?
Thank you for the others. I will make sure i am tested for all again though anyways but wait at least 2-3 weeks without antibiotics.
I felt the same if not worse on antibiotics. The reaason i say this is because i was in the hot sun on vacation 100 degrees when i was on abx and passed out and broke out. other than that it felt like i was on too much antibiotics to tell.
My wonderful LLMD took me off of antibiotics compeltely... get that one!
Posted by Stefan (Member # 19150) on :
I asked you for gi issues because parasites can cause that.
Posted by n.northernlights (Member # 17934) on :
An ILADS doctor will test for all those other infections too, and knows which lab to use (most other labs use too insensitive methods) so no need to see someone for cfids or an infetion medicine specialist.
A LLMD will test for other things to find any other cause for you feeling ill.
But you have had all those positive tests in the past, so you really do have lyme that was treated for too short a time back then.
If you compare to some other infections diseases, often they are treated for six months to a year at least. Like tuberculosis, the treatment is six months. Tropical sprue, one year treatment.
I have read a little bit on fibromyalgia and cfids websites, and they really do believe in chronic lyme too. They often are treated for lyme as well.
Posted by KLSS (Member # 7763) on :
I've read in passing the the abx can affect the outcome of test results...one of the more knowledgeable folks I'm sure will be able to help you out with that. It was my understanding that you had to be off the abx for a week or two before testing. Did the doctor know that you were taking Doxy at the time that he drew your blood for testing?
Posted by lou (Member # 81) on :
Do you have a copy of your test results? If so, look and see which babesia you were tested for. There is more than one, and not all have tests. If you don't have a copy of the test results, get one for your own files. You should be keeping copies of all test results.
The reason I am asking specifically about babesia is your night sweats. If you have babesiosis, you may have other tickborne diseases too.
Where did you get the name of this so-called LLMD?
If you have not already done this, you should contact a local support group. Click on support groups line in green menu box left side of this page. Find one in your area in the listing.
Posted by AliG (Member # 9734) on :
Brucella canis also doesn't cross-react on other Brucellosis tests and can cause human illness.
Brucellosis can also be tick-transmitted.
It can also cause sweats and would need different ABX than Amoxicillin or Doxy.
In 1995, did ALL of your symptoms resolve?
Did you have another bout of fulminant illness leading you to seek treatment again, or did it creep up on you?
Posted by Sojourner (Member # 9424) on :
They can help you get to the best (and closest) llmd. There is a lot of lyme there (in Bucks) aubs and you deserve some good treatment.
Posted by aubsdaddy (Member # 21128) on :
yea right sojourner the LLMD i seen develops and runs that site says he doesn't believe in chronic lyme and I don't think he has a clue what he is talking about. he is a quack.
lou i have been keeping all my blood test results. the barbesia microti DNA, real time PCR i was test for and came back negative on 400mg of doxy
and yes dr S. put me on 400mg of doxy before he tested me and knew i was on 200mg of doxy before i even saw him.
I do have acid reflux disease and have had it for many years to the point where i throw up stomach acid
Posted by aubsdaddy (Member # 21128) on :
Alig - after i was treated for lyme in 1995 i was only 15 years old. my mother took me to the hospital several times because i felt fatigued all the time several months after i was so called "cured"
I always felt fatigued and tired my whole life, had acid reflux since 2000 and have COPD and emphysema now. I have been taking 2mg of xanax three times a day for 13 years because of extreme axiety issues i have that no one could ever figure out so they just give me pills.
Posted by LymeLearned (Member # 20565) on :
Um..me chiming in again....these folks KNOW what theyr'e talkin' about witht Inf. Disease docs.
Three weeks ago a local Dr. S saw me in the hospital.
NOTE that I showed him the photos of my legs with ticks embedded. They're blown up, so no doubt what they are.
I showed him the proof of Lyme/Bb positive labs on the ticks.
I told them that one was in 48hr and the other 72.
HE LOOKED me right in the eyes and said, "You don't have Lyme."
Really? Really. Now that I think about it, if he truly doesn't know that days embedded Lyme positive ticks will transmit disease, should quit practicing medicine as an "infectious disease" doctor!
His name was Dr. S too, so I checked where you are...different town. I know.
It doesn't stand to reason, but inf. dis. docs are rarely on board to help us with the fastest spreading infectious disease in America.
So many doctors have an agenda to promote the cost-saving lies. Their bottom line is to save themselves and promote the IDSA agenda.
ILADS makes the very best doctors. Let these wonderful people guide you. They did it for me too.
Hang in there-and get to the right doc the moment you can.
Posted by AliG (Member # 9734) on :
Came across this post in a search for old info on Brucellosis. Just wondering how you're doing now.
I hope you've gotten some help & are feeling better
PS - I don't know if this was covered in the thread already, if so I apologize.
There are many strains of Babesiosis for which there are not yet tests & Ehrlichiosis can impact the immune system & cause false-negative testing. :-(
![[group hug]](graemlins/grouphug.gif)