posted
Here are my IGeneX Lyme Test Results. I will appreciate your evaluation/review and comments regarding the results. I just do not know how to accurately interpret them and am somewhat confused since getting a 2nd opinion yesterday, doctor feels "High Probability" I do not have Lyme but suspects heavy metal poision, mercury, lead, arsneic, etc. Of course, I'll have to now wait on more test results. Any comments will be apprecited. Thanks,
END OF REPORT
Posts: 97 | From Tennessee | Registered: Nov 2005
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
Hi there,
For disclosure purposes, I am not a doctor. I am doing everything I can to understand Lyme Disease since I have it myself and hope to better my situation and those of others going through this often frustrating ordeal.
As for WB results, you usually look for any of the following bands to be IND or + and that could suggest serological exposure to Lyme. These following bands are specific for Bb:
18 23 30 31 34 37 39 83 93
In your results, I see an IND for 39 in the IGM which COULD be an indication of some exposure to Lyme. Also a 23-25 IND in the IGG with the 39 also.
39 and 23 are Lyme-specific. So, I would be uncomfortable suggesting that this test rules out Lyme Disease. I would also keep in mind that often people with chronic Lyme test negative at first and then later have more positive tests as treatment is initiated and their immune system begins to create antibodies. Sadly, this is one of the downsides of tests based on antibody response for a disease that largely evades the immune system.
I would have also asked to have coinfection testing done for Babesia, Bartonella, Ehrlichia, and Mycoplasma Fermentans. Those may provide some other good information to help round out the picture.
Lastly, Lyme is a clinical diagnosis and again, I would not rule out the possibility, even though not a strong test result, that this could be Lyme since you show IND for those bands. IND means it was not negative, but was not strong enough to be clearly positive.
Best
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Hi
I have seen similar test results and they in fact where negative. I would therefore agree with with your Dr. that the probability is low.
There can be a number of reasons why some of the bands light up. The Igg will stay active for a very long time (maybe all our life) and this is likely why 41 is high. The anitbody correspondinf to the 41 kDa band is related to a proteinn in flagelin (the wip things that many bacteria have for moving around) and as a result almost any past infection with any number of bacteria could cause this.
The significance of the 66 kDa band is not entirely argeed on as of yet but in either case a single band with no other indication of lyme specific bands is highly suspicious as not being lyme related. Remember that the "band" that are seen are related to your blood having fragements of the lyme bacteria. the fragements are caused by eig attacked by your imune system or antibiotics. Since the baceria breaks aparts there are many many fragment sizes and your body makes antibodies to these as it sees these as foreign bodies. It is therefore unlikely that with a past or present Lyme infection only one band would have an indication with all of the others being blank.
One last note, IgM goes active early in an infection... and also goes away after a while (or almost with Lyme as it may cycle up and down) IgG is a longer acting and longer to appear antibody so one would normaly expect to see something (even an indeterminate) in IGG in a long standing infection. As a note, IgM is not widely recognized as a stand alone indicator of Lyme. A second WB test might show different results since the Ig bands for G and M are known to change over time in a cyclic fashion. A second test might therefore be in order in a little while.
As a result of all of this lyme moves down the scale of likelyhoods (but NOT eliminated) maybe after checking for other things and nothing shows up you will have to go back to lyme. The last thing you want to do is treat the wrong thing so it is better to test other things also (you might get a strong indication of something else from a test).
Many Dr's will test in steps trying to eliminate certain things over others as a means of saving the patient money. To test for every posibility would cost an enormous amount of money so they has to be a progression of tests based on symptoms. If none of the tests are positive then a good Dr will revisit the tests that are already done and reassess marginal results and then rethink the diagnosis. A bad Dr will tell you nothing is wrong and give you a fibro-malgia diagnosis.
To remember how it works.. IgM -> sick in the MORNING (ie fast), IgG -> sick in the GRAVE (slow).
There are a bunch of other Ig's also but they are specific to certain types of infections.
Posts: 1184 | From north america | Registered: Feb 2003
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posted
I would not ignore the possibility of your having Lyme disease. The risk is too great. Would your dr agree to your doing a trial run of abx ... see if you herx or if you feel better?
Then after a month on the abx, retest. Your body will then be able to register a stronger response to the antibodies. Be sure to go off the abx for at least 2 weeks before restesting.
posted
Scott and David, your information is most helpful. I am now beginning to understand more about how to interpet the bands.
I sure do appreciate both of you taking the time to explain and share your knowledge with me and for others to see as well. Everything you said makes perfect sense to me.
As for coinfections, yes, Quest Lab results were positive for: Babesisa, Mycoplasma, CMV and Epstein Barr Virus. When the results reflected Babesia, my doctor then ordered the IGeneX for Lyme. So, I'm assuming even though the Lyme test looks like it might not be Lyme, the coinfectins may change that theory, thus, leaning more in the direction of Lyme........don't know, just wanted to ask you guys..........
Will you please let me know what you think about the coinfections being present.
And, oh yes, I forgot to mention on my last post that the new doctor feels I have almost total Adrenal Exhaustion which causes my symptons similair to Lyme.........I found him to be highly knowledgable and experienced. When he ask me the questions it was easy to answer him with "yes".
Plus, he doesn't think I even have Candida/Yeast. He based his decision on questions only and he does make sense due to the fact that I've never had a yeast infection of any kind nor ever been on abx. for long periods of time, perhaps, 4 short doses during my lifetime. Just thought I'd share this one with you as well.........I'm getting to think I'm back to square one.......but do pray it truly isn't Lyme......... Thanks,
Posts: 97 | From Tennessee | Registered: Nov 2005
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posted
Dalphia......how many of these symptoms do you have?
Lyme Disease Symptoms List 1. Unexplained fevers, sweats, chills, or flushing 2. Unexplained weight change--loss or gain 3. Fatigue, tiredness, poor stamina 4. Unexplained hair loss 5. Swollen glands: list areas____ 6. Sore throat 7. Testicular pain/pelvic pain 8. Unexplained menstrual irregularity 9. Unexplained milk production: breast pain 10.Irritable bladder or bladder dysfunction 11.Sexual dysfunction or loss of libido 12.Upset stomach 13.Change in bowel function-constipation, diarrhea 14.Chest pain or rib soreness 15.Shortness of breath, cough 16.Heart palpitations, pulse skips, heart block 17.Any history of a heart murmur or valve prolapse? 18.Joint pain or swelling: list joints_____________ 19.Stiffness of the joints, neck, or back 20.Muscle pain or cramps 21.Twitching of the face or other muscles 22.Headache 23.Neck creeks and cracks, neck stiffness, neck pain 24.Tingling, numbness, burning or stabbing sensations, shooting pains 25.Facial paralysis (Bell's Palsy) 26.Eyes/Vision: double, blurry, increased floaters, light sensitivity 27.Ears/Hearing: buzzing, ringing, ear pain, sound sensitivity 28.lncreased motion sickness, vertigo, poor balance 29.Lightheadedness, wooziness 30.Tremor 31.Confusion, difficulty in thinking 32.Diffculty with concentration, reading 33.Forgetfuiness, poor short term memory 34.Disorientation: getting lost, going to wrong places 35.Difficulty with speech or writing 36.Mood swings, irritability, depression 37.Disturbed sleep-too much, too little, early awakening 38.Exaggerated symptoms or worse hangover from alcohol
------------------- The following signs/symptoms may be present in those infected with Babesiosis: Fatigue* Arthralgias* Myalgia* Drenching sweats* Headaches* Emotional lability* Depression* Dark urine* Splenomegaly* Dizziness* Nausea and vomiting* Cough* Dyspnea* Fever* Chills* Hepatosplenomegaly* Jaundice* Malaise* Shortness of breath* Bleeding tendencies, bruising* Thrombocytopenia* Hemoglobinuria* Hyperesthesia* Pulmonary edema* Encephalopathy* Low to normal range leukocyte counts* Possible elevated levels of dehydrogenase, bilirubin, transaminase* Anorexia*
Approximately 25%- 66% of Babesia patients are known to be co-infected with Lyme disease. These symptoms may continue for long periods of time, decrease, then return. A low Babesiosis titer (IgG) often indicates a chronic infection.
An acute or current infection may show a higher reading on the IgM test initially. There are over 100 species of Babesia in the United States but only ONE or TWO species are currently checked by commercial labs.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
Lymetoo, Yes, I've been on Doxycycline for 6 weeks and have herxed really bad. Actually, I began the herxing 2 1/2 months ago when I first began the Heparin shots, 1 cc. twice daily. And, have been very sick every since, actually almost bedridden.
I've forgotten what a good day was like and this has only been since beginning treatment for Epstein Barr and Mycoplasma, prio to taking the Doxy. for Lyme.
You are right, one should never take anything rgarding Lyme lightly and I certainly will not.
Please know I appreciate your response to my request. Anything else you have to add for my and others information will be most appreciated. Regards,
Posts: 97 | From Tennessee | Registered: Nov 2005
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
Don;t forget that ticks have been refered to as the cesspool of insects. They have carried very bad things for many years. Endemic Lyme is a newcomer to the mix, babesia however has been around for ever. I am sure there are a lot of other things out there also then have yet to be discovered.
So...It is quite possible that you don;t have lyme but do have soem of the other nasties. Don't celebrate yet though. Some of the the other stuff can be as bad or even worse than Lyme and just as hard to get rid of. A goof example is babesia. I was infeced with it 30 years ago and was asyntomtic for the about 20 of those years. No lyme in the mix.
Interestingly the other tick bourne infections can also cause Lyme like symtoms. Relapsing-remitting symptoms joint problems, neurological problems etc.
Basically when you are bitten by one of these bugs from hell you have just shared your blood with the blood pool of all the animals around you. Never mind thinking wild mice with all those bugs on them are gross, now you share their blood... not a pretty thought.
Depsite what some say, i strongly believe that pretty while any animal disease is viable in humans if given by direct innoculation into the blood. It may be that the viability is marginal an d that is why some tick bourne disease progress slowly and become chronic. They just are not strong enough to overwhelm the body, yet there is enough genetic variability to remain viable int eh himan body. he gneeritcs eventuall get filtered to favor the viable ones and you end up with an ever increasing organism load that nobody can figure out.
You are lucky that you have some definative test results to go on. This is a big step to recovery. The worse thing is not being able to figure out the problem.
One good thing is that some of the infections that you are positive on also use the same treatment as that used for Lyme so even if you did have lyme it would be automatically treated as part of the other treatment.
Good luck.
Posts: 1184 | From north america | Registered: Feb 2003
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posted
David, yes, you are correct in that the other nasty bugs can be worse than lyme. For instance, I understand that Babesia is very, very difficult to treat and get under control. I'm suppose to begin treatment for this one in two weeks. Can you let me know how and what medications, etc. you used to get the Babesia under control.
Thanks for your recent post, you really gave me and others some very good information and from experience. So how are you doing now, is everything under control. Don't know how you dealth with the Babs for 20 years. It brings with it many issues that are almost intolerable to deal with and Babs. alone can be dibilitating even without anything else. Thanks, Gaye
Thanks, Gaye
Posts: 97 | From Tennessee | Registered: Nov 2005
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david1097
Frequent Contributor (1K+ posts)
Member # 3662
posted
When I contracted babesia I did not know it nor did the Dr's at the time figure it out. I was extremely sick for 10 days with coffee colored urine. After that i recovered for a while. About 6 months later I was in bed for almost 3 months. I was 19 at the time. A couple of months later I was in the hospital for 2 weeks and had every test imaginable but no diagnosis (nobody thought to look at the blood under a microscope). In all it took me 4 yers to fully recover but I was left with some deficits. Still they where only realy a nuisense.
Apparently a lot of people carry babesia with them and are entirely asymtomatic. I bascially was in that state for 20+ years.
I subsequently got infected with Lyme and some other stuff (bartonella + ???) This is when things started to go down hill, again a slow process and then a rapid drop off.
I have been taking atavaquone in either mepron or malarone form. It alone does no control it. I also take artiminisin as well as IV zithromax. If cut back on any of these drugs the damn thing comes back. The lyme is slowly being erradicated so maybe after it is gone the babesia will quiet down to tolerable levels.
I have relapsed with babesia twice, both time sgetting back on the above drug mix has resulted in a rapid intial improvement followed by a slow improvement after that.
Once the lyme and other bacterial infections are under control (this has been a difficult journey also) I might try some of the older babesia treatments like quinine and flagyl. I have been on flagyl in the past and did pretty good on it while taking mepron but I was too sick to be able to seperate symptoms from one another. In the future I will try to monitor the babesia response to Flagyl . Flagyl has had some anicdotal reports of being good against protozian infections, so may it will be good against babesia also.
Babesia is rather easy to see under a microscope and I have seen the parasites in my blood. The symtoms correlate with the observed parasite load. While the observations are interesting they are of no clinical use since they are not done by a certified lab. Still it is interesting to see what is going on. I have also tested positive by babesia IFA but those tests are too expensive to run weekly to see what is going on.
I suppose in the end analysis Babesia is not really that bad. Bartonella on the other hand (and its cousins like tulerimia and brucellosis) can spell big trouble as they can and do affect the joints and more significnatly the brain. When I finally got the bartonella under control most of the neuro problems have disappeared asside from the residual damage that had occured up to that point. This has been quite a relief.
I think thats it for now and don't worry to much since you now have some test results that can be acted on.
Good luck with your treatment
Posts: 1184 | From north america | Registered: Feb 2003
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