I have been feeling bad for the past 3 years. It all started after i did ecstacy my third time about 3 years ago. Shortly after maybe days or weeks i started to feel really fatigued. I have developed visual stars and specticles shooting around in both of my eyes and floaters both of which i never had before. I went to every doctor imaginable and spent thousands in medical bills all the long i was getting more depressed and more tired. I soon developed after images and felt as if i had schizophrenia was put on antidepressants and antipsychotics both of which did nothing for me. After more searching and looking for doctors i finally came across the possibility that i have lymes in late stages. Sure enough regular lab came back negative and through igenex i had the urine dot blot assay test which i gave 3 samples of urine and 2 of them tested positive. I never had joint pains or any of the other symptoms many of you guys have.I also tested positive with 3 bands positive on the western blot from igenex but not by cdc standards. Im only 21 years old and this is ruinging my life. Have been seeing a lyme literate md for almost a year now and tried many different antibiotics with little progress until recently i have been getting bicillin shots twice a week for 4 months now and i am also on flagyl.
My main symptoms are- fatigue depression visual aura stars squigly floaters brain fog and jus overall i feel crappy not at all how i used to feel.
A family friend is a nurse and she keeps teling me she does not think its lyme well my question is did or does anybody have these symptoms as i do without the joint problems and all the other ones like palpitations and tingling and numbness and do you guys think that i have lymes, how reliable is this igenex lab and did anybody have these symptoms alone that i have and get better with treatment especially the visual symptoms please id appreciate any insight im having a bad night lol thanx garry
Posted by cantpredictme (Member # 9163) on :
does any one have any information for me please im sitting here waiting for some1 with some good solid information to reply to my questions
Posted by Dave6002 (Member # 9064) on :
quote: ..through igenex i had the urine dot blot assay test which i gave 3 samples of urine and 2 of them tested positive.
Is this PCR test?
quote:I also tested positive with 3 bands positive on the western blot from igenex but not by cdc standards.
Which bands are positive?
Posted by cantpredictme (Member # 9163) on :
im not sure if it was the pcr test but i do know is that i had to take antibiotics for 5 days prior to the test and they found lyme bacteria in it or so they say.
and the iGG positive bands were 39kda+ 41kda++ shows 2 pluses 58kda+ and 31kda shows Indecisive the rest were negative
on the igm 23-25kda Indecisive 39kda Indecisive 41kda indecisive rest were negative
Posted by cantpredictme (Member # 9163) on :
it says igenex igg result positive cdc/nys result negative and for igm they both show negative
Posted by bettyg (Member # 6147) on :
quote:Originally posted by cantpredictme:
I have been feeling bad for the past 3 years. It all started after i did ecstacy my third time about 3 years ago.
Shortly after maybe days or weeks i started to feel really fatigued.
I have developed visual stars and specticles shooting around in both of my eyes and floaters both of which i never had before.
I went to every doctor imaginable and spent thousands in medical bills all the long i was getting more depressed and more tired.
I soon developed after images and felt as if i had schizophrenia was put on antidepressants and antipsychotics both of which did nothing for me.
After more searching and looking for doctors i finally came across the possibility that i have lymes in late stages.
Sure enough regular lab came back negative and through IGENEX, i had the urine dot blot assay test which i gave 3 samples of urine and 2 of them tested positive.
I never had joint pains or any of the other symptoms many of you guys have.
I also tested positive with 3 bands positive on the western blot from igenex but not by cdc standards .
Im only 21 years old and this is ruining my life.
Have been seeing a lyme literate md for almost a year now and tried many different antibiotics with little progress until recently i have been getting bicillin shots twice a week for 4 months now and i am also on flagyl.
My main symptoms are- fatigue depression visual aura stars squigly floaters brain fog and jus overall i feel crappy not at all how i used to feel.
A family friend is a nurse and she keeps teling me she does not think its lyme.
Well my question is did or does anybody have these symptoms as i do without the joint problems and all the other ones like palpitations and tingling and numbness,
and do you guys think that i have lymes,
how reliable is this igenex lab and did anybody have these symptoms alone that i have and get better with treatment especially the visual symptoms please id appreciate any insight
im having a bad night lol thanx garry
Garry, did you get my newbies links/advise of 16 pages when you joined? I sometimes miss a few folks.
In there is an explanation of Dr. C's WESTERN BLOT numbers. I see you posted numbers below but haven't looked at the rest of your post yet.
Also, in what I sent you is the complete list of lyme symptoms and yours match those.
Also, we have LYME no s; correct any MD, etc. adding the S please; we thank you!
Had to break it up to read it for my neuro comprehension.
Go to SUCCESS STORIES found at the top of general or medical!
Sorry to hear you are having a bad night; many of us do, and many can't sleep at all.
So Garry, start reading on the things I mentioned above to help reassure you in starting your lyme education.
Best wishes. At least you found it EARLY in your life! I'm 57; had for 36 yrs. and 2 yrs. in lyme treatment. You've got your YOUTH going for you. Bettyg Posted by Carol in PA (Member # 5338) on :
Garry:
According to my notes, band 39 is definitely the Lyme bacteria, borrelia.
The visual symptoms can happen when the Lyme bacteria infect the cranial nerves to the eyes.
You said that you are 21 and this is ruining your life. Well, those of us who are older feel exactly the same way.
The symptoms you describe sound like Lyme. Apparently your LLMD thought so too, or he/she wouldn't be treating you with antibiotics.
There are many knowledgeable and helpful folks on this board, but not all of them are online at this hour.
There is alot of info to read in the "newbie help links." You may need to print some of it out to make it easier to read and understand.
Heh, when you're done with it, I think you should loan it to the nurse who doesn't think you have Lyme.
Wishing you the best, Carol
Posted by cantpredictme (Member # 9163) on :
quote:
The symptoms you describe sound like Lyme.
Are u refering to the visual symptoms i was trying to describe and also do you too have just chronic fatigue with no joint pains but many neurological symptoms?
Posted by Carol in PA (Member # 5338) on :
I have chronic fatigue and many neurological symptoms. I had joint symptoms when I first began showing obvious symptoms twenty years ago. Although I feel stiff and sore when I move, I don't have many joint problems now. Heh, at least not like before.
You seem to be looking for someone with symptoms identical to yours. That may take a while, as symptoms differ, depending on which areas of the body are affected.
Carol
Posted by GiGi (Member # 259) on :
Vision symptoms relate to the co-infections of Bartonella and Babesia. Has your doctor considered these?
Posted by lymie tony z (Member # 5130) on :
OK here's my take...
Not everyone has the physical joint/muscle pain... I know of one guy who is just fatigued...
Lyme likes to go after previously traumatized body and or brain parts/organs.
Having done exstasy...and probably booze I'm sure you did'nt do your grey matter any favors...
Quite possibly this is why you have the vision problems...
I, and I suppose, most folks get the painful joints...knees and shoulders or feet first.
However...this does not mean that psychological symptoms can not take precedence...
Ataxia,aphasia,dimensia...etc.
You may get the physical pains later anyway....
OR you may not...hopefully you won't....cuz you are seeing a llmd...
good luck/////zman
Posted by TheCrimeOfLyme (Member # 4019) on :
I didnt have joint pains.
Posted by duke77 (Member # 5051) on :
quote: Vision symptoms relate to the co-infections of Bartonella and Babesia. Has your doctor considered these?
While this maybe true Lyme itself causes many, many eye symptoms.
I think you were describing the LUAT test. It is a PCR test not an antibody test. The LUAT tests for the DNA of the dead bacteria that are excreted through the urine after a few days of abx. I had a positive one as well. I wasn't sure they were even doing this test anymore.
Posted by humanbeing (Member # 8572) on :
Joint symptoms were the last on board for me...neuro and psych for 4 years before the joint stuff joined the party.
I think if you wait long enough even your toe nails will fall apart
Hang in there...you are wise to be on lymenet now (some very smart and compassionate people here)
Blessings, Kim
Posted by cantpredictme (Member # 9163) on :
i just got results back from my doc in nj from the cb57 test. the results were a 7 and the normal range was 4-37 how reliable is this test? He said i measured in the lower range of it and do any of you guys know of anything else that can make the results so low. Its indicative of a compromised immune system so can antibiotics or cigarete smoking make my reuslts lower?
Posted by Vermont_Lymie (Member # 9780) on :
Your symptoms sound like Lyme to me. My major symptoms for years were neurological, and only later did I develop any major, and intermittent, joint pain.
Lyme disease is completely variable, it can be different from person to person. Yours will be uniquely yours, I am sorry to say.
Garry, you said you have tried many antibiotics. Did you try doxycycline? If so, at what dose and how long.
For me, 400 mg/day/doxy was a profoundly life-affirming experience and totally changed how I felt for the better.
Posted by Dave6002 (Member # 9064) on :
quote: urine dot blot assay test
That's an antigen dot blot similar to Western but less accurate than Western.
Only positive PCR results can give you a definite answer that you have Lyme.
Other tests may have false positive results.
Suppose the false positive rate for the dot blot is 1/1000.
The frequency for two false positives will be 1/1000000.
Suppose the false positive rate for each Western band is 1/1000.
You have 4 positives.
The frequency for 4 false positives will be 1/1,000,000,000,000.
The frequency for 6 false positives will be 1/1,000,000,000,000,000,000=1/10E18=one in one Quintillion.
(one Quintillion= Thousand thousand billion)
In anther word, the chance that you are positive for Lyme is 99.999 999 999 999 999 9%.
In addition you have 3 indecisive (some think it's positive) bands and you have some lyme-like symptoms.
Not convinced?
Start with false positive rate at 1/100.
The frequency for 6 false positives will be 1/1,000,000,000,000=one in thousand billion.
Start with false positive rate at 1/10.
The frequency for 6 false positives will be 1/1,000,000=one in one million (if add 3 indecisive bands, the number becomes 1/1,000,000,000=one in one trillion).
Consider all of these, your chance not having Lyme is very low, almost impossible.
I am not a mathematician, so please correct me if I am wrong.
Posted by seibertneurolyme (Member # 6416) on :
Dave -- Great analysis!!!
Cant -- Hubby did not have any real pain the first 5 years -- mainly nausea/vomiting/dry heaves and tremors/myoclonus/seizure-like episodes. For last 6 months pain is a major symptom -- right shoulder and lower back.
Here is an article you might want to read, " First Symptoms of Chronic Lyme Disease Often Are Psychiatric in Nature."
You really should try to give up smoking. It definitely won't help your body in this fight.
Bea Seibert
Posted by Michelle M (Member # 7200) on :
Hi Garry.
WOW -- I'm still blown away by Dave's impressive computation!
Hey -- I have almost no joint pain at all.
Well, at least I DIDN'T, until some brainless teenager plowed into the back of my truck a few months ago. But I can't blame that on lyme.
You really gotta lose that "s" on "lyme," 'kay?
Now, I have got a full-blown case of neuroborreliosis, which is perhaps what you have...which is really just a fancy name for lyme disease manifesting itself in your brain. Leaving you foggy, depressed, exhausted, and so on.
For months I had what I called "trails" coming off things -- kind of like when you pass your hand in front of your face, there would be a string of a zillion hands, like a broken movie reel, frozen there. This is called "palinopsia." Doctors do not know much about it; however, it lessened over time (and NOT a short time, either). It's probably due to brain inflammation.
So please don't feel alone. There are more of us brain-challenged lymies out here. Please weigh in and tell us about your co-infection status, because failure to get better after a year sometimes means THAT. Whassup with that?
Welcome!
Michelle
Posted by cantpredictme (Member # 9163) on :
thanks for your interpretation with the numbers really did give me a sense of relief but its just soo hard after soo long of not knowing what was wrong wit me and so many professional doctors telling me there is nothing they can find to finally think that there really is something wrong with me that is physical and is also causing all of these neurological symptoms thanx for all of the insight from everybody it trully was helpful!
Posted by Vermont_Lymie (Member # 9780) on :
Garry,
And remember -- good nutrition is so very important to recovery from neuro-lyme! You might want to see a lyme literate nutritionist, and there is alot of good advice for vitamin and herbal supplements on this net. If you want to get better, you will need to really take care of yourself, and that means the whole life: rest, diet, friends and good treatment. good luck and let us hear how you are doing -- VL
Posted by lymiebean (Member # 10015) on :
Hi fellow sufferer,
I am new to this subject(lyme). and new to this medium{computers} but even so this acess to so much info is helping me and it will help you too. Have faith. But you may not be happy to hear what I haveto say:
Someone else has referred you to Dr. Borrescano. Go to his monograph and study it. If you are not ready to change your life and habits, don't start, These microbes will rebound like wild hyenas to a start and stop program.
Lifestyle changes are non-negociable. You are young so this could be difficult. These bugs know when you are weakened and they move in to new aareas and weaken us further. They laugh at our efforts to rationalize our bad habits and multiply and multiply. They feed on negativity so we have to keep our spirits up and take positive action.
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