I just got a call from my LLMD's office and they said I don't have Lyme (even though I have been treated under strong suspicion due to many organs not functioning/failing).
I had a tick bite when I was young and I am bedridden most of the time, I don't understand this. Are these tests ever wrong? Is there such a thing as false negative when it comes to IgeneX?
I am SO confused, upset and feel hopeless, AGAIN...I am on the verge of tears. Not that I want to have Lyme but if it's not Lyme what is it???
I have literally been tested for "everything" by more than 30 doctors over the course of 20 years and no one can come up with anything. I thought I finally had the answer.
Could you please help interpret my results? Thank you and God bless.
(18, 22, 28, 30, 45, 58, 66, 73 HAD NO STARS)
Posted by sixgoofykids (Member # 11141) on :
Tests can have false negatives.
That being said, I've never seen one as completely negative as yours. I would start looking for what else might be wrong.
What are your symptoms?
Have you responded to abx treatment at all?
Posted by IckyTicky (Member # 21466) on :
Same questions as Sixgoofykids... have you responded to the abx treatment any? How long have you been under abx treatment? Were you on abx when you tested through IgeneX?
IgeneX isn't always correct. In fact, my youngest daughter tested only positive on IgeneX IGG, and negative IGM with only IND on band 41 IGM. But a regular lab found her positive band 28 that IgeneX didn't find. Then we found out later that she had Ehrlichiosis as well.
My son was CDC pos. with IgeneX but after repeated testing just now came back + for mycoplasma a year after starting tx. My husband is neg. for Lyme through IgeneX but very obviously has Lyme and responded well with treatment.
If you truly don't have Lyme, and are responding to abx then it could very well be that you have a co-infection. Those don't come up + on most tests either. For instance, my LLMD and I are convinced that we also have Bartonella, based on symptoms, but tests always come back neg. IgeneX isn't foolproof.
If you were on abx when you tested through IgeneX maybe you need to be off them for awhile and retest.
Posted by mysteryillness1970 (Member # 24588) on :
I am on Mepron and Zith and feel somewhat better (however, some days I also feel completely drained..unable to get up out of bed). I know that my chills have diminished greatly and my hip hasn't bothered me as much
These are my present symptoms
ORTHOPAEDIC:
Abnormal marrow edema involving left hemi sacrum & left illiac bone (both sides of SI joint),``Sacroilitis'',Osteo-necrosis of the tissues surrounding the SI joint,debilitating left hip pain (shifts from right to left, left being the most dominant), ``Piriformis Syndrome'', DEXA Scan: 10% below young normal/Proximal Forearm 21% below young normal.
OPTHALMOLOGY:
``Keratitus'',``Myopia'' with low ``Astigmatism``,``Dry Eye Syndrome``,``Conjuctiva'',Blurry vision, Floaters
DENTAL:
``Periodontal Disease'', Decaying teeth (2) and receding gums
Brain fog, depression, irritability & pronounced startle reflex with anger, over stimulation=stress, swollen glands, adrenal fatigue, short term memory loss, impaired cognitive function, cramping, achy/numb, sore fingers, deep pain in right, forearm, wrist and elbow, tingling /buzzing and numb in extremities (2009)
CARDIOLOGY:
Heart size is upper limits of normal with pericardial thickening or effusions
ENDOCRINE:
``Hypothyroidism'', ``Narcolepsy'', ``EBV``,``Mono``,``HSV'', "CFS'' ``Fibromyalgia'',``Wilson Syndrome'' (<97* upon rising), recurring wave of deep body chills every day for the past two years, Low DHEA, low Cortisol, low Progesterone and Estriol, Insulin fasting: depressed,Gluten intolerance, left ovary enlarged painful/follicles, HPA axis dysfunction
OTHER: ``Leaky Gut Syndrome``, ``IBS'',51 IgG food allergies/Mineral/Amino Acid deficiencies
Posted by mysteryillness1970 (Member # 24588) on :
Thank you for your response Icky Ticky. Yes I am being treated,as stated above (my post went up beofre I had time to read yours).
I have been treating since July and was on abx when testing.
Good advice. All I know is that my former LLMD doesn't think he needs to treat me any longer and I am so sick about it (literally). I have two girls (one with Lyme & co's) counting on me to function.
Posted by mysteryillness1970 (Member # 24588) on :
Is it possible to have only a co-infection and not have Lyme?
Posted by IckyTicky (Member # 21466) on :
It's possible, yes.
I think you need to go on an ABX break and retest. I have had EVERY SINGLE neuro symptom you have & with more to spare! I also have the thick blood, chills, leaky gut, CFS, fibro., periodontal disease... I don't know why an LLMD would decide you didn't need treatment with all those symptoms. Maybe you just need a different LLMD!
Posted by mysteryillness1970 (Member # 24588) on :
I think you may be right IT..I really need someone to guide me, however, I don't want to spend a fortune finding out either.
What are you on to treat the identities you listed above and are they helping? How long have you been in treatment?
I was told by my LLMD that I had to be on abx on order to test positive b/c he thinks I have had it so long..I don't know what to think anymore.
Would you mind sending me a pm and let me know who you see?
Thanks Posted by little_olive (Member # 28063) on :
Have you been tested for Sjorgrens'?
Posted by sixgoofykids (Member # 11141) on :
Could you have a dental infection? That infection can get into the bloodstream.
What about this - Polycythemia? I recently heard about it, so know little, but something to look into.
Did you test positive for any coinfections?
Also, if I were you, I would go to someone who knows ART. I found it to be very helpful to guide me to the issues I had going on.
It is significant that you feel better on the meds.
Posted by mysteryillness1970 (Member # 24588) on :
SGK thanks for reaching out to me. I am going to google those things you mentioned.
In the meantime, would mind pm me and let me know who you use for ART/Lyme?
I am desperate to get better
Thanks
Posted by sixgoofykids (Member # 11141) on :
The best thing to do for an ART referral is to go to Dr. K's website and look at practitioners he's trained.
I went to Germany for treatment after two years on the ILADS protocol .... I wrote about it in my blog below (look at Oct. 2008). I am no longer in treatment because I am well. Posted by Lymetoo (Member # 743) on :
Definitely try testing while OFF ABX... as most LLMD's do.
Hope you find some answers soon!
Been tested for all the viruses? Ehlichia? Bart and babs? Mycoplasma? RMSF? Bruccellosis?
Posted by mysteryillness1970 (Member # 24588) on :
Thanks LT & SGK there are many things to consider, I just wish I could get someone to do my homework for me. I am still strugling to make a decision on who to see now. According to my syptoms above I have narrowed it down to Dr. H, Dr. R and Dr. L in NY.
Since I have had decayed teeth and necrosis of the tissues surrounding my SI Joint the local docs (which are a pitiful)know it is something but don't seem to know nor care how to find the source. They just keep suggesting steriods, pain killers and that is about it. I want none of the above.
The only ones I have been tested for are: Bart, Babs and Ehlichia through Labcorp and they were negitive (although my PCP said they gathered the blood specimen incorrectly) My doc was already treating me for Babs when the results came back.
Now, however he thinks my symptoms are mainly Bart related (since I have cognitive-neuro, mood/depression stuff for years that continues to get worse). However he wants to stop all the progress of the Babs trmt and move onto the Wormwood combo and Zhang HH2 (I can't afford the latter) Is there anything else I can take (or should I say afford)?
When the results came back today I learned that if he says they are negative that's just what it is. I guess I am on my own now...I seriously feel like I am never going to make it and need serious help soon, I just can't take this anymore(must be the Mepron talking)
I am hoping my PCP who has been very receptive thus far will write me another script Mepron and Zith(considering I have only been treating since July), I hate to start over again. I felt awful when the Mepron lapsed and I was without it for two days.
I am going to tap into Dr K's info, thanks for the tip...has anyone on here seen him? Are his rates out of the roof? PM me please, I would love to know.
I am So incredibly cold now that my body is shaking to the bone (this happens at least 3-4 times everyday since 2008)...so I am off to bed with three blankets.
Bye for now and thanks again. You are such caring people.
Posted by LymeXtu (Member # 24590) on :
Mystery - Don't know what to say except thinking of you again and so sorry for all you are going through.
Posted by mysteryillness1970 (Member # 24588) on :
Thanks so much for reaching out and your sincerity.I guess it wouldn't be as bad if I weren't dealing with an unruley teen (who displays Bi-polar tendencies) and a tween with Lyme/co's alone.
My family is all against this stuff and just think it's the next CFS label (which makes it worse) They all think I am doing more harm than good.
I amno teven going to mention the money...sorry to be such a Debbie Downer but when is it ever going to let up? Just when I thought I was in good hands...
I cannot wait to see the day, if I make it that far, when I am well and can help OTHER people..
![[Smile]](smile.gif)