So I have been on ABX for almost a week now and feeling better, but all my test come back negative?
I know Lyme is a clinical diagnosis but it seems like everyone has had atleast one test come back showing something????
Mine show absolutly nothing no bands whatsover??? It makes me think think this all may be in my head, but why do I feel better on the ABX?
This is driving me nuts I just want to know what the deal is? Should I just start popping prozac instead of amoxicillin... I dont get it.. Posted by Lymetoo (Member # 743) on :
Take antibiotics for a few months and then re-test. Thats what made my test change to positive. And yes you are right, LD is a clinical diagnosis.
Posted by Ahodge01 (Member # 23569) on :
Lymetoo,
Symptoms... Pressure/tingling in face... This is the worst sometimes it feels like someone is pushing on my face Constipation Fatigue Achy all over Gastrointestinal problems Anxiety Nausea Dizzyness Air hunger HEART PALPITATIONS!
I have been to a ton of specialist had a gross amount of blood drawn and told Im fine! This all happened very acutly I was hit after working at niagra falls with vomitting one morning... Thought it was just a bad hangover.
Then, a couple weeks later on a drive back from Vegas I was hit with incredible diarrhea then my whole body hurt so bad I could barely move. Symptoms progressed from there.
I have also been tested for all co-infections I dont get it?
Posted by lyme in Putnam (Member # 11561) on :
I've been positive for 9 years lyme and bart. This is the first year I came back negative and I reek of symptoms. Doing treatment regardless.
Posted by Lemon-Lyme (Member # 19229) on :
I agree with above posters regarding antibiotics. Take for several months, then redo tests, ideally Igenex. Redo all co-infection tests too, include spotted fever as well.
Based on symptoms, you should be checked out for Celiac/gluten allergy and probably undergo some basic heart tests, if you haven't already.
Have you had a holter test or echo done recently?
As for Stony Brook WB, did your doctor request they check for all bands? Unlike most labs, Stony Brook will report all bands like Igenex, but only if you doctor requests it.
Posted by massman (Member # 18116) on :
Find a good LLMD or LLND.
Lymes' job is to hide well + it certainly does.
Why is there such an obsession with finding it in body fluids ? Both by docs + patients ? It usually is not there at all and many docs disregard Igenex tests.
Posted by Ahodge01 (Member # 23569) on :
Those are my main symptoms the ones that have been greatly reduced by ABX for a week are...
Heart palps fatigue dizziness dizziness upon standing feeling of balance has somewhat returned Constipation is getting better with gluten free diet Air hunger is slowly improving along with stamina going up stairs... I am still quite short of breath at times though. Nausea... I cant really tell because of abx I have a good appetite but if I get to excited and eat to much I get nausea.
Symptoms that still seem to linger (I have only been on ABX 1 week)... Acute ringing in ears or sssshhhhhhhhh sound... It freaks me out cause it is so acute. General Achiness Anxiety Pressure in face has improved but still there... The first night I took abx it went completely away... Gastrointestinal is hard to tell with ABX
I have had a couple heart test done... Echo, EKG's no holter, but I am 22 have been an athlete all my life and no where near over weight. I thought heart for awhile also, but I really dont think thats the problem...
Also, with the heart palps it wasnt one of my first symptoms... My first symptoms were just extreme tiredness, lack of appetite, weight loss and severe head aches... Heart palps came on a month later.
Massman,
I know its a clinical diagnosis but it would be nice to have something to say "Aaaa ha, I told ya so" to all those other docs and family who just think you have anxiety.
Im not sure which bands he requested I actually thought the test was going to Igenex but The nurse said stony brook.
Oh well I guess I will continue on the ABX the only thing is I was hoping for a definitive answer cause I increase my dosage tonight... Oh well maybe an increase will take care of the face pressure like the first single dose did.
Best of luck to everyone... I hope you an I can beat this soon!
Posted by radfaraf (Member # 11909) on :
Its also possible those are co-infection(s) that you are treating and you just happen to not have lyme!
Posted by timaca (Member # 6911) on :
Do you have gluten intolerance? Is that why you are on a gluten free diet? How long have you been gluten free?
Do you know what your B12 level is?
Have you been tested for enterovirus? (Coxsackie B and echovirus)?
With no bands from Stony Brook, I would think that Lyme is not your issue...
Best, Timaca
Posted by Lymetoo (Member # 743) on :
Better get tested for BABESIA!
Yes, take abx .. then retest after one month thru Igenex. (go off abx for 2 wks before retesting)
Posted by Ahodge01 (Member # 23569) on :
To answer a few questions... I have been tested for multiple viruses... i have been tested for EBV,CMV, Parvo and another I believe. I have been tested for all co-infections babesia, Bart, Eirichela (sorry for spelling). All negative except for EBV but even that has gone down.
I am on Gluten Free because the LLMD said it was good to do while on ABX..
B12 will be discussed at my apt next week... I was low in magnesium and vit D... but I dont know when to take the supplements to fix this? Can I take them with my ABX?
If its not lyme why have I been feeling better besides the pressure and twitching in my face?
timaca, I dont get it? I thought lyme was a clinical diagnosis? This is why I went to all the trouble to pay for an LLMD, but now you say no bands from stony brook its not lyme?
Posted by Haley (Member # 22008) on :
It sounds very possible that you have Lyme.
I personally had a bulls eye rash and a tick bite but I didn't know at the time it was Lyme.
I was diagnosed 1 1/2 years later.
I became violently ill after the bite (I don't know how much time had passed exactly). I was never really well again from that time on. I had lots of GI problems and problems with my scalp but not problems with my face.
Your situation sounds a bit like mine that's why I wonder if it could be Lyme. How long ago was it that you were sick - vomiting?
Posted by Lemon-Lyme (Member # 19229) on :
You can take magnesium and Vit D while still on antibiotics, just don't take magnesium at the same time. Best to wait several hours before or after (3-4 min should be fine), before taking minerals.
Some docs don't like their Lyme patients taking vitamin D, but unless your 1, 25 is high, I see no point to waiting. You can ask your doc about that.
Interesting thought posted that perhaps you have co-infections, and no Lyme. Statistically, that'd seem very unlikely if you are talking multiple co-infections... but it could be possible you have babesia and one other co-infection, such as ehrlichia or maybe rickettsia. Not sure any of those really are cured by amoxicillin though. Latter two are hit more by Doxy, and babesia needs malarone/mepron.
I've had two WBs with no bands (Sunrise), yet years previously had several positive bands on a local lab's WB (no ideas which bands), and also had a positive Igenex IGM more recently. So not sure if no bands mean anything or not. You could try a different lab's WB and get a positive, the ways these tests seem to go sometimes.
*wonders*
Did you happen to go gluten free the same exact time you started antibiotics?
Posted by kday (Member # 22234) on :
Well, if ABX are making you better, and if it's not Lyme, well, consider yourself lucky. Maybe it's another bacterial infection, and you'll recover quickly.
With most infections, antibiotics make you feel better.
Posted by Ian (Member # 24637) on :
I wonder if a CD-57 test would be helpful? Most docs don't use it as a diagnostic tool, but if your CD-57 count were quite low it, together with your constellation of symptoms, would suggest Lyme. I'm going to get a CD-57 done myself. I think it might rule out Lyme in my case, and leave me just dealing with Babesia and Bartonella.
Posted by Ahodge01 (Member # 23569) on :
I have had GI problems since last year... However, I got really sick, where it affected my quality of life in October.
I had always been a heavy drinker but was always blessed with never having to suffer from hangovers. Well, while working at niagra falls a couple of us went out and drink after work like usuall.
I woke up the next day vomitting, sweating, feeling terrible... It went away towards the end of the day and I figured it was just a hangover.
After that I got were I couldnt drink alcohol at all. And on the way back from Vegas with my girlfriend late October after a long night of drinking I was hit again.
This time every part of my body hurt and I had diarrhea. I went downhill from there so October to late March I had no help, but doctors saying anxiety.
Finally, found an LLMD in April have been on ABX two weeks and feel better... I dont know... Its so confusing it seems like everyone on here has had a test that shows something somewhere mine are all completely negative.
To answer some questions...
I did go gluten free with ABX... I have been tested for all co-infections...
I will inquire about the CD-57 next tuesday at my appointments I see two llmd's.
Lemon-Lyme,
Thanks for the advice on when to take the supplements... I will probably start the magnesium tonight with dinner and hold off till Tuesday after talking to my LLMD's about when to take the Vit D.
Posted by Lemon-Lyme (Member # 19229) on :
Just a thought, which I could be very wrong about, but if you started gluten free at the same time as antibiotics, how do you know if it's not the fact you stopped gluten that is making you feel better?
Meaning, what if you have celiac/gluten intolerance?
If you started gluten free months before antibiotics and didn't notice a benefit, then after starting antibiotics you felt better, then gluten free isn't the reason. But if you started both at same time, it may confuse things as to what is helping what, or if antibiotics are the reason you are feeling better.
Something else to consider is H. Pylori. Antibiotics could help that.. although not sure how soon they'd kick in.
As for D, make sure you eventually take D3 gels or drops. Avoid tablets, D2, or prescription D.
Posted by timaca (Member # 6911) on :
Ahodge~ To answer your question about lyme being a clinical diagnosis. The main problem with sticking with that statement is there are other pathogens that can cause the same symptoms as lyme. So, if you say it's lyme, without ruling out everything else (which is really hard to do), you may be treating yourself for something you don't have. You have NO bands from SUNY....that says something. However, you feel better on antibiotics...so perhaps you have a bacterial infection that is not lyme (like Cpn).
Gluten free is a difficult diet. I, personally, would not go that route unless I had a medical reason to do so.
You did not mention being tested for HHV-6. Or coxsackie B or echovirus. Those are other problematic viruses. (The last two should be tested at ARUP lab)
It is hard to do...but test for everything the doctors can think of and treat the most obvious. With no bands from Stonybrook, lyme does not look the most obvious IMO. Especially since your problems started with bouts of heavy drinking...you may not even be dealing with an infectious pathogen...
Best, Timaca
Posted by Ahodge01 (Member # 23569) on :
Timaca,
Been tested for hhv-6 maybe not the other ones...
I thought alcoholic intolerance was one of the top symptoms of lyme?
Alcohol intolerance can be a sign of any infection or ANY liver dysfunction - adrenal dysfunction &/ or blood sugar and other metabolic problems, etc.
Timaca is correct in that it could be other chronic stealth infections with - or without - lyme. Some LLMDs know about all the stealth infections but not all do, so you might search for one who has a wider expertise.
You are closest to Dr. C - anyone know whether he's familiar with other stealth infections? I will PM his website to you so you can call and ask him directly.
Testing labs and links here:
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
I would encourage EVERY person who has received a lyme diagnosis to get the following tests. . . .
- at link. -
Posted by Keebler (Member # 12673) on :
- Looking back I see that you wrote:
" . . . on a drive back from Vegas I was hit with incredible diarrhea then my whole body hurt so bad I could barely move. . . ."
" . . . this all happened very acutly I was hit after working at niagra falls with vomitting one morning... Thought it was just a bad hangover."
- you should be assessed for FOOD POISONING. You said you've been to a ton of specialists, though. Were you tested for a full range of food borne infections?
Organization which works to promote food safety and prevent food borne illness.
Supports foodborne illness victims, educates consumers about unsafe food . . . . -
Posted by Ahodge01 (Member # 23569) on :
Keebler...
Thanks for your PM I know about Dr. C in the mid west. I live in NY now and see two LLMD's... I dont know what else to say this is all very disheartening ... I have been checked for what seems like everything under the sun.
Posted by Ahodge01 (Member # 23569) on :
I guess you would say I see Dr. C and Dr. M if you were looking at the New York LLMD's
Posted by Keebler (Member # 12673) on :
- Did you check your vehicle's exhaust system? Were you driving a new vehicle to Niagra Falls and to Las Vegas? A new car smell is very toxic.
Also to consider: Alcohol intolerance is a major symptom of porphyria.
Porphyria Thread (inlcuding KPU/HPU). -
Posted by Ahodge01 (Member # 23569) on :
Keebler...
Thanks for the links... The exhaust on my car was leaking... How does one go about getting tested for food born illness? The second link in that post doesnt work for me.
I looked at the porphyria stuff. I dont think that fits my symptoms. The alcohol intolerance was very acute. I had been drinking for 15 years. Also, it seems a lot of that points toward heredity. And my liver function is 100% normal.
The only thing I really changed about my diet was that I consumed around 4 times in the three months which is a lot for me. Being that I maybe had sushi once a year before this.
I have had a stool test done though and no parasites.
I was wondering about heavy metals... Mainly mercury... If you have any links on that subject it would be really helpful.
As ive mentioned my main symptom is this pressure/tingling in face it is so annoying and it can make me sick at times. My LLMD attributes it to bells palsy.
I have no clue why though it went away after the first amoxy pill. It was such a relief I just want that feeling back again.
None the less interesting stuff and thank you.
Timaca,
I am going to have to disagree with your statement... "You have NO bands from SUNY....that says something." I have read Dr. B's guidelines a few times now and he is very clear that the diagnosis of lyme is a clinical one. He would figure from reading his writings that it really means nothing.
He states and I paraphrase.. No lab has 100% accuracy... He doesnt say every lab but stony brook.
Thank you though for your suggestions... I went through your list of viruses in the other thread and I have been checked for around half. Some i dont really feel fit my symptoms either.
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