Posting Igenex test results , what do you think of this?

General
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1

Hi all :

I do not have time to go into too much detail , but the past two months have been extremely frustrating .

I found a LLMD in my state listed on the ilads website , was tested by both Stony brook and Igenex labs , was told I had lyme and was treated as such . This LLMD has now disappeared and a new LLMD has taken his place , I am now being told I do not have lyme and should stop all treatments . There is a long back story to all this , that i will post later on .

I am going to share my Igenex results and see what you all have to say on the subject .....

Igm test

Band 23-25 = +

Band 31 = Ind

Band 39 = Ind

Band 41 +++

IGG test

Band 41 = ++

Band 58 = +

Ifa B Burgdorferi = 40 ( equivocal )

My other tests ( CBC ) showed the following

MCH = High

Vitamin D 25- hydroxy = Low

IGM - M = Low

M. pneumoniae Ab, IgG = High 2.75

Thank You .

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Sounds like an honest doc.... Good Luck.

In regards to your specific results the most significant is the M. pneumoniae Ab, IgG = High 2.75. You apparently at some time have had an infection involving M. pneumoniae. This is a pretty broad test for mycoplasma. A bronchitis/pnemonia of course is the most obvious (but its too late as its an lgG to treat although it likely was and I doubt you have a lung infection at present) but actually the most common is a Strep Infection and/or several STDs (chlamydia the most common) There is frequently arthritic type symptoms involved in the aftermath. There will be a few LLDs who will get off on the mycoplasma as evidence of Lyme but not many and with the lack of other positive bands, there shouldn't be any.

Far too many supposed "lyme Literate" practitioners are anything but. The ILDAS has become first a trade association with open membership to anyone with a prescription pad. They have few and enforce no standards of practice. While there are some excellent ILDAS doctors they are in the small minority. The primary function of the ILDAS has become political. They are unable to dissuade the larger scientific community from enforcing the same standards of peer review that the rest of the medical community is held to. Instead of presenting verifiable and repeatable studies they have instead relied on Patient Testimonials and anecdotal evidence to "present their case" Instead of solidifying their research base they instead have turned to legislation and political pressure. The difficulty with this approach is while they indict the CDC and/or FDA the leave out the rest of the worlds scientific community who won't accept poor science either. They also fail to mention that the standards these agencies put forth are the product of multiple sources and preponderance of research and evidence. Lyme is big business all right but not for the Traditional medical community. This year Lyme spending in the US will exceed that of Biological Arthritis medications (which are the pharmaceutical companies biggest cash cow at present.)

There are active Lyme Literate practitioners and researchers in parts of the world where there has NEVER been an single infected tick EVER (including Australia) I'm not quite certain how many of the 27 million Australians have travelled to a lyme area let alone been infected, but even based on the membership of Practitioners in the CACLD (which disbanded this past summer) and the continuing membership of the LDAA, its pretty significant. (It would take millions to equal the rate incidence in the US)

The sad thing is there are some very sick people out there who instead of getting real help have been pulled into the charlatans web and in some cases have been severely harmed.

I

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Thanks for your reply , you seem well informed on the LLMD situation . Yes I was obviously used and abused . He told me I have the immune system of an Aids Patient it was totally compromised by lyme and years of fighting this infection off . I was put on heavy dose of Minocycline and supplements , and then told by the new LLMD ( who turned out to be just a PA ) " just go home and flush that stuff " .

Yes I have had Pneumonia but many years ago , also had scarlet fever when I was younger .So am thinking that is why the MCH is 2.75

BUT , I had called this LLMD ( who turned out to be just another PA by the way ) because I am having excessive ringing in my ears and my eyes were getting blurry , I have almost lost my voice and feel like I have the flu . They had no answers , only to tell me to find another doctor , lots of help these folks were .....

I went there in the first place because I have had severe neurological issues for 3 years now , due at large part to a car accident ( T boned by a drunk driver ) . But I also have this looooong list of other neurological symptoms and after 5 neurologists and every test known to man I have no answers . only a LOT of doctor bills .

This list list of wackadoo symptoms would fill this page and then some , I am totally disabled at this point , It effects everything , muscles , bowels , bladder, breathing , eyes , ears , voice , swelling , pain in joints , balance and coordination , neuropathy , and lots more ,.

I have been checked for every disease they can think of , all my Brain MRIs are clean , Emg normal , NCT tests clean , Xrays are normal , spine taps good , etc , etc . Most of these tests have been repeated many times .

My blood tests always seem to hint at some sort of infection , that may have gone systemic during my spine surgery , Yet all the doctors ( over a dozen now ) specialists and GP alike , haven't got a clue !

I guess i can put this Lyme issue to bed now , even if I do have it , its obvious finding competent care is a joke , The main stream doctors just dismiss it and the LLMDs are just playing doctor .

Oh well I thank you all for your help and wish you all the best .

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Did you ever feel better after a spinal tap? One of the things that comes to mind is a condition called idiopathic intercranial hypertension. Initially it be caused by your car accident. but any of the "cyciines" used long term can cause it as well. Its almost impossible to find, but an impprovement following a spinal tap is a pretty good clue.

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Yes , now that you mention it , The last tap I had in May 2014 made some improvement with the spasticity . But the doctor wanted me to try , Baclofen and Zanaflex at the same time and I was so out of it for several months I really dont know what actually helped . He took me off them after several months , because we did not see any improvement and the side effects were bad . This was Neuro # 4 in 3 years .

After 6 month with him we still had not located the problem , so he referred me to another Neuro who did more EMG , MRI and Nerve conductivity tests and then also passed me on to another Neuro . The Neuros all get stumped after doing a series of EMG , MRI and Nerve and Blood tests and then just pass me on to the next guy , who usually starts the cycle of tests all over again . ( or offer no referral at all ) . This cycle has been repeating for 3 years now , its frustrating at best .. and expensive . Each new doctor does the same exact tests over and over and then sends me away , Its like being stuck in an..... Intro To , 101 class forever .. It reminds me of the movie Groundhog Day !!!

Thanks for you suggestion , I will look into it , I am looking for another Neuro as we speak and will mention that in the letter .

6

Ok

This is most likely all due to damage from the car accident , thats the doctor's opinion .

I am still having side effects from the ABX , Ringing in ears , blurry vision , and slurred speech , he says dont sweat it as it can take a month or more to wear off , but I am concerned it may also be from the accident .

Do those symptoms usually take that long to go away ?

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Yes, it sure can. There is NOTHING innocuous about abx. Thats why they are always used short term My granddaughter who has a severe form of Juvenile Idiopathic arthritis just got out of the hospital after darn near dying from a reaction to a broad spectrum antibiotic. It wasn't an allergic reaction. It has become very common. Our body is pre programmed to fight ABX.

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These symptoms are worse today , along with the headache , this ringing is driving me nuts .

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If you have a smart phone download a white noise app White Noise Lite by tmsoft is one I use. play with it you may only need a single ear bud. A good auduiologist (not a hearing aid guy) can make a custom device that is most often covered by insurance. Given everything you have been through, I woild think a good physiatrist could help in general

10

So from the response I am getting , its looking like these LLMDs are really just uneducated wannabees , representing themselves as doctors , and causing more harm than good. And this international society is not much more than a referral service for all this crap.

Are there actually any lyme doctors out there at all , or is this all a big hoax to cash in on sick people .......

I am now questioning if lyme even exists or if it just some thing the pharmaceutical companies invented to sell more drugs !

We have a serious problem with our medical system in the USA .

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The pharmaceutical companies have nothing to do with it as the meds are being used by the LLD's very contrary to prescribing instructions. None of them are deemed safe by the manufacturers used the way they are.

The medical community is opposed STRONGLY to the whole chronic lyme issue. The evidence just doesn't exist. The few studies put forth by the ILAD have not been repeatable OR verifiable. That doesn't mean there isn't recognition that something is going on for a few. That is deemed Post-treatment Lyme Disease Syndrome.

All most everyone gets better except those who take multiple courses of ABX. The few who don't get relief from other medical modalities. The sad thing is for the most the ones who don't get better are those deemed "cold cases" or never had verifiable disease, rash, etc. but are "diagnosed" by very non specific testing. Remember every "disease" you ever had will leave behind antibodies.

Our medical system is just fine, what sucks, is politicians monkeying with based on pressures from the "alternative communities" who lacking the same standards of evidence as the regular scientific community, build a substantial lobby to get around the standards. No way in gods green earth should NPs/NDs have the freedom to prescribe they do.

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I am gonna have to disagree with you on some of that , But I do agree the insurance lobby buys politicians who tilt the scales in their favor .

I have been falsely diagnosed several times on a Main Stream doctors "hunch" ie: clinical diagnosis . They have allowed interns to read MRIs and make huge mistakes ,

In my case a broken neck was missed on an MRI by a lab intern , 30 seconds with a Neurosurgeon and it was very clear what the issue was . However the 4 doctors I saw in between disregarded the Image and just read the report . And each one treated me for something different . I have been prescribed all kinds of medication and been subjected to many different treatments . Its all about the cash , both sides of the street !

Its ALL insurance driven...... its about the fastest most profitable way to make a diagnosis fit into a billable package , No our system IS BROKEN .