I recently went back to my LLMD for a follow up after taking Doxy for a month. Im still always tired and have "air hunger". I know air hunger is can be caused my babs. I got tested for all the co-infections and they all came back neg. Therefore my doctor doesnt want to out me on Mepron(sp?) and zithomax because I dont have a neg result. Im so annoyed cause i still cant breathe right and ive been tested for everything under the sun and have been to lung dr., etc...everything still comes back normal! My Dr. told me if i had air hunger i wouldnt be able to walk of the steps without being out of breath! He sent me back to my primary dr. Noone knows what the heck is wrong with me!! Could this be lyme still or babs?? Could this be just stress as everyone seems to think it is!! Can anyone else relate??? Any guidance would be great!!
Posted by cactus (Member # 7347) on :
Yes - it could still be babs or Lyme. TBI testing isn't that reliable.
Would you consider changing LLMDs?
Many treat based on symptoms not tests, and I think that's a better approach.
Are you still being treated for Lyme? Or anything?
Posted by trigal2 (Member # 20578) on :
How LL is your doctor? Doxy for just one month and you are suppose to be cured???!!!??
Sounds like you need to see another LLMD and get a second opinion on your lyme and co. symptoms.
I see you are in NJ. PM me if you would like a referal for a LLMD in Central NJ.
Posted by lgirl29 (Member # 25158) on :
thats what I thought. My LLMD said that the insurance company would fight me when I filled the script becaus mepron is so strong and he doesnt have a positive result to back it up. I thought alot of this disease was a clinical diagnosis. I know I have babs...what the heck else could it be! Id like to change LLMDs but i cant afford to at this time and he relativly cheap. Ive been off doxy for about a month now so im not on anything. I just got tested on friday for lyme again and im waiting for that result to come back. Im thinking my primary will put me back on abx if it comes back positive again. So annoyed!!
Posted by lymeladyinNY (Member # 10235) on :
My insurance company doesn't fight me when I fill my mepron script. I asked my LLMD if he'd ever heard of patients having trouble with this issue and he said he'd never heard of it in his practice.
Your doctor doesn't sound too literate to me. Even if your doctor is relatively cheap, what good is he/she if he/she won't help you with your problem, which is likely babesiosis?
When I got treated for babs after many months of just going after Lyme, I saw a HUGE improvement in my symptoms. I am at the point where I need to continue with mepron or my symptoms come back full-blown. You need a doctor willing and able to deal with this.
- Lymelady
Posted by lgirl29 (Member # 25158) on :
Lymelady-what were your symptoms for babs?? Did yo uhave a positive result the your dr. treated you or a clinical diagnosis??
Posted by 'Kete-tracker (Member # 17189) on :
Not enough info. If this doc IS an LLMD, then he knows 1 month of "doxy" is nowheres NEAR enough treatment for patients exibiting late-stage Lyme symptoms, such as chronic fatigue & "air hunger". Were you + on the Western blots? Or did he clinically diagnose your Lyme? Did he have you on another antibiotic protocol BEFORE the doxycycline?
BTW, "walking up steps" tests your overall physical condition & lung function... little relation to Lyme- or babesia-induced "air hunger". (I wonder if he's understanding you correctly.) Is it worse at night? What lab did he use [for the "babs" panel]?
Posted by BoxerMom (Member # 25251) on :
My husband tested negative for Babesia, then developed classic symptoms after 18 months of treatment for Lyme and Bartonella. No new exposures.
He is responding to his Zith, Mepron, Malarone. The insurance company has not said anything. He still has no positive Babs test.
Posted by lgirl29 (Member # 25158) on :
kete-tracker-he used lap corp which tested neg for co-infections but positive for lyme. I guess because i dont have really bad symptoms that he just decided im ok...its bullcrap...i just made an appointment with an infectious disease dr. See if he can help me at all.
Posted by LightAtTheEnd (Member # 24065) on :
An infectious disease doctor is unlikely to help at all and may be actively hostile.
My LLMD has been well worth the money because he's the only medical professional I have met who has actually had both the knowledge and willingness to help me.
Posted by lgirl29 (Member # 25158) on :
ive already been to a LLMD so im trying this dr. out...plus he takes insurance!! lol...he deals with lyme disease as well. so we will see what he has to say!
Posted by cactus (Member # 7347) on :
Have you posted in seeking a doc?
Doesn't sound at all like you are seeing a LLMD.
How are you feeling now, off of the doxy?
Posted by lgirl29 (Member # 25158) on :
He def is a LLMD. Unforturely not a very good one. I dont feel as bad as I did before taking doxy, but im def not back to normal. Still really tired and still have the trouble breathing. I guess if im as bad as other people then i dont get the help I need! I wont be goin to that DR. again thats for sure!! Nobody knows whats wrong with me and thats the annoying part!!
Posted by lymeladyinNY (Member # 10235) on :
lgirl, I'm sorry I took awhile to respond.
I was diagnosed clinically. I've never had a positive test. I responded to artemisinin the first time I took it by having acute respiratory distress.
I have had strange babs symptoms, some that I've never heard others speak about. I have "locked-in" syndrome with it. My eyes will close and I won't be able to respond in any way. I want to move and I'm fully conscious, but I'm unable to. It is very, very scary.
Other symptoms: flu-ish; sudden dropping to the floor (like drop seizures); feel like there's an animal clawing inside my chest and abdomen; anemia; low blood pressure, sharp kidney pain, esp. on the left side; weakness; terrible leg pain in upper quads (can't walk). Once I had dark red urine.
It has been hideous for me - very painful and scary. Treatment has been great but I'm sure that if I went off it I would eventually return to the above symptoms. That doesn't sit well with me.