i am going to try a retest if this makes sense. i already did igenex over a year ago, igm cdc positive with 31 band also +++ positive, igg plain negative, pcr plain negative.
i want to do a retest. sort of wondering which tests to do, what i can afford, and who i should get them through. my main concern is that if i have lyme, it is well backed up and i stop inducing strange feelings about my case in even LLMDs, family and other people i have to explain my existence to. otherwise if i do not have lyme i would like to know this as soon as possible, and i can move on and focus on this from a another perhaps neuropharmacological perspective, because with my head and my energy levels, i do not have a heck of a lot to focus with.
a concern about whether i have lyme is that i experience very little non-exertional fatigue induced pain except on certain abx which may have been more side effect related rather than herxheimer-related, but is very unbearable for me, and in my opinion, severe. my symptoms are all congnitive-based neuro, i have zero executive function, cannot make simple decisions and actions, and cannot do much without being very slow and getting confused.
i am also regularly filled with intense anger-like feelings, agitation, akathisia, ridiculous unmanagable sleeping schedule and stong tendancy to do anything at night, pacing without ability to convert into action, desperate thoughts, cyclic neverending rumination, skin limb and head sensations, constant daily diurnal bruxism, and occasional sudden episodes of tension causing a need to contort my face and hunches me over and makes me very clumsy, and my movements sometimes hyper-exaggerated. i am concerned that if this is lyme, that it is related to lyme related extrapyrimidal syndromes, chorea, parkinsonism, etc. pubmed.
symptoms i have that may be interpreted as physical are my very low energy level, my movement-related issues, stiffness (may be more related to low fitness due to fatigue,) and intermittently repeating drastic muscle weakness, along with just being pretty weak and fatiguable in general. this has at times made me wonder if i have myasthenia gravis or even non-congenital muscular dystrophy type II or promm, with associated neurocognitive effects. i have wondered since that article if it is possible if i have myasthenia related problems with acetylcholine receptors causing my cognitive problems, and if this is worth testing for. related article: pubmed article.
apart from this i am often decievingly hypertalkative, randomly aggressively argumentative and prone to near blow-ups with people, and also often clingy towards people, which anesthesitizes a lot of inner tension, but also deal with a lot of social anxiety, phobia, and tend to stay immobile indoors in my apartment mostly. i am a clingy, listless, nervous recluse, if that makes sense at all...
i am particularly concerned with dr. f's (from columbia) statement that a potentially huge number of IgM positives are false (5-40%). i really wish i had the 2006 dvd but here is the thread i got this from is: here.
i really want to do a retest, and want to know which are most assuredly valuable and cost-effective and recognize. i may even look at an elisa, just in case i may get a positive, or mdl.
otherwise i may be primarily considering the typical igenex panel of: IgM western blot, IgG w.b., with or without PCR.
and also possibly the myasthenia acetylcholine receptor antibody test.
any input on this?
also very few doctors are specifically neuropsych focused and informed i find, ESPECIALLY in canada. of the LLMDs possibly available in the U.S. i am especially worried about the affordability aspect, and if my dad would be inclined to help financially if i do not have more solid proof if is lyme. i am also worried that the fight for professional and offical medical recognition of the neuro symptoms in chronic lyme is in serious danger of being lost.
i am thinking of just going with the homewood psych admission in guelph, and if i can get unilateral ECT, since i've pretty much failed on all meds, and ECT has an ability to reset the movement, feeling-related and exective related dopaminergic system.
(sorry for missing words, sentences, lost points, or general incoherence i have not corrected. sorry this is a very me-focused post but i am very desperate and feeling very lost over losing so much of my life and connections with the world.)
Posted by danielb (Member # 8522) on :
ugh, how do i format this?
edit- there.
Posted by Lymetoo (Member # 743) on :
Format??? Don't ask this technically challenged female!!
I would suggest the 188 and 189 test from Igenex. I think those are the correct numbers for the IgG and IgM.
Forgot....It costs around $190 for both.
Posted by seibertneurolyme (Member # 6416) on :
Your 2nd pubmed link did not work.
If I were you I would be retested by Immunosciences lab. They test for more strains than most other labs. Also, since you have had some antibiotics you may not show many antibodies. Some people do and others don't.
Have you had any IV antibiotics or ones that penetrate the blood brain barrier? What about coinfections?
Hubby's primary symptoms have been nausea/vomiting/dry heaves and tremors/myoclonus/seizure-like episodes. His LLMD says the tremors and neuro symptoms could be caused by either Lyme, Babs, or Bart.
For a period of about a year hubby had 2 or 3 daily episodes of his muscles freezing up. He would shake so hard that the muscles locked up and he was paralyzed -- could not move or speak. IV Primaxin stopped these episodes.
Recently had a relapse and this time quinine seems to have mostly stopped the tremors and "transient paralysis" episodes. 6 mg a day of IV Ativan could not stop these attacks. The neuro ducks had hubby tested for a rare genetic disease -- stiff-man syndrome. Test was negative.
During his recent hospitalization hubby's EEG could not be interpreted due to artifact -- his tremors made the test unreadable. At the time his hyperaccusis was very active --sound sensitivity.
Are you extremely sensitive to either light or sound? Both of those are strong indicators of encephalopathy -- very few docs will actually diagnosis that. The pubmed article you posted does say that the patient had encephalitis.
The cognitive and mood symptoms you describe sound much more severe than what would normally be expected with early myasthenia gravis or early Parkinson's.
The tests for acetylcholine antibodies are only 60 or 80% accurate for myasthenia gravis. Although hubby has such severe muscle stiffness he has been tested to have zero antibodies to acetylcholine.
Actually a deficiency to acetylcholine can cause the same symptoms as an excess of acetylcholine.
Hubby did really well on the IV Phoscol -- very very expensive. The oral phosphatidylcholine helps, but not as much as the IV. Lyme and babesia both like acetylcholine.
Hubby has seen 16 neuros I think it is now in the last 6 years. They used to tell me he was only depressed and anxious before we got the Lyme diagnosis. Now they are looking for other rare diseases. The I.D. duck at the hospital said she would suspect mad-cow disease except that hubby did not have dementia.
Early in his illness hubby had 3 psych admits. What I feel has helped him most mentally is CoQ10 -- minimum of 400 mg daily. None of the psych meds or seizure meds helped. SAM-e and 5-HTP have also been of great benefit. Must take Resveratrol with the 5-HTP to keep it from converting to quinolinic acid.
Hope I have been of some help.
This is not medical advice, just personal experiences of hubby.
Bea Seibert
P.S. Hubby had no real pain issues until he had been sick over 5 years. Still has no joint or arthritis issues. Problems with bulging discs and back muscle spasms.
Posted by seibertneurolyme (Member # 6416) on :
You might want to post about the Electroshock Therapy as a separate thread.
Hubby was offered this before we got a diagnosis, but we refused.
I am pretty sure that the Lymies who have done this have not had good luck.
If you have Lyme in your brain and central nervous system which it sounds to me like you do, then I would be very nervous about doing something which would create even more free radicals and possibly permanent loss of memeory.
Bea Seibert
Posted by danielb (Member # 8522) on :
sorry i have been meaning to reply, but am not having much luck organizing my thoughts for the last few days. will try again soon.
Posted by Lymetoo (Member # 743) on :
Daniel, Have you done a trial run of abx yet?? That would likely help your test show more bands.
I'm sorry you are suffering so. Posted by Geneal (Member # 10375) on :
Daniel,
Igenex costs 190.00 for Igm and Igg Western Blot (Tutu was right).
Also, advised my husband to stop taking all antibiotics 10 days prior to testing. Would give the greatest potential to show more bands.
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