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05/13/2008 16:35
krissy
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Jamie I am awaiting my my Lyme test, but I tested positive for Epstein Barr virus. The test I took 4 lyme is Lyme Disease, EIA w/REFL IGG, IGM Westerm Blot. I have no idea how accurate this test is and you seem to know so much. Can you give me some insight? Thank you
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07/21/2008 06:45
lymemd
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The amount of positive reactivity at the bands is compared to a control of known Lyme. Bands that are positive are reported + to ++++. A negative is -. Many samples have an Ind report. There is some reactivity but is less than the control. If Ind bands are present at critical locations the report is likely positive even though it fails to meet IgeneX criteria, which are conservative. The important bands are:23.31,34,39,41,and 93. ands 58 and 66 may be associated with co-infections. Patients respond differently to treatment. Some get better when only Lyme is treated. Others require aggressive co-infection therapy. Many treatments cover both Lyme and Bartonella. Babesia requires separate treatment. Other non co-infections may need treatment. Many folks seem to be over looking Chlamydia peumonia. This is a nasty infection which can be very hard to eradicate and mimics Lyme. See the work of Dr. Statton on this. Treatment for this may also cover Lyme and Bartonella as well as Ehrlichia. Patients who test positive for tick borne co-infections should be assumed to have Lyme. Lyme is the most difficult to prove. Lyme test are more likely to turn positive the longer one is treated. Lyme C6 peptide antibody tests should be obtained as well. Any C6 index greater than 0.1 suggests Lyme exposure. Levels over 0.3 are a very good indicator. The positive set point was based on limited studies of acute Lyme and is not helpful in chronic Lyme. I have had conversations with the lab director at Immunetics which comfirm this. Gary Wormser of the IDSA is on the board of Immunectics, the lab which developed this test and set the bar ridiculously high. A curious point about HHV6 is that the bi-polar medicine Lamictal may be useful. Bottom line: Don't focus on bands. Lyme is largely a clinical diagnosis. A good doctor will look at a lot of information to make the diagnosis.
I am a family doctor in Germantown Maryland. I have been treating Lyme for several years and have treated between 500 and 1000 patients. I am learning all the time. I don't claim to have all the answers. I answer questions because I want to help people. Everything about this disease is controversial. I want to write a book which will be a patient guide to Lyme, so questions from patients are helpful to me.

Popular posts by lymemd
    Lyme controvery
    Morgellons and Lyme
    Denial
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07/21/2008 10:07
krissy
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Hey its been a while since I posted this, but thank you for agreeing that Lyme is a clinical dx. My IGenex test said negative. I have already been to see my LLMD twice and I have been on all kinds of meds for, low B12, overgrowth of yeast, 3 things to help me sleep etc. and vaccine naturalization twice a week.

Here were my bands for my test, now grant it I have about 50 symptoms and did get bite by a tick in 1997 not to mention my dog had ticks all the time between 1997 thru 1999, I lived in a wooded area.

IGG

31 IND

34 IND

39 IND

41 +++

58 +

IGM

30 +

34 IND

39 IND

41 +++

I have to have bladder sx. before I start my Doxy, Im about a month.

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07/21/2008 12:00
lymemd
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Ind bands at 31, 39, 34 and 41 make Lyme exposure very, very likely. I have spoken with the Lab director at IgeneX who agrees with this. They can't report it as positive unless it meets their criteria. Your doctor must read between the lines when he looks at these values. The use of Diflucan is questionable. You may need to take it while on antibiotics. You can see my blog: Lymemd.blogspot.com. I started writing here to reach out to more patients. I am not always right but I keep learning. Low B12 and folate is very common in chronic Lyme. I think it may due to consumption by the spirochetes. Malabsorption is another possibility. I have no idea what the vaccine therapy is.
I am a family doctor in Germantown Maryland. I have been treating Lyme for several years and have treated between 500 and 1000 patients. I am learning all the time. I don't claim to have all the answers. I answer questions because I want to help people. Everything about this disease is controversial. I want to write a book which will be a patient guide to Lyme, so questions from patients are helpful to me.

Popular posts by lymemd
    Lyme controvery
    Morgellons and Lyme
    Denial
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07/21/2008 17:58
ConnieD
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What is vaccine naturalization?
Please do not take anything I say as medical advice. I am not a doctor.

Open your mind to the possibilities available to you.

An attitude of gratitude is good 'medicine,' too.

~Lyme Disease Support Group Leader~
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07/21/2008 19:53
krissy
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OOPS I meant Vaccine neutralization. It a serum thats helps to boost your immune system and it helps your fatigue. I give myself a shot twice a week. It has worked for me but not for everyone there are 6 types. When I went to my LLMD on my 1st visit I was given a small amount under the skin not into the arm, after 10 minutes I was to tell the Nurse if I felt any different. Shots 1-4 did nothing, 5 I felt a little peep but on shot 6 I felt a slow burst of energy almost as if I woke up, since for the last 5 months I have felt like Im always tired, my eyes were wide open and I felt taller. When that happens they say that you neutralized.
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07/21/2008 20:02
ConnieD
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Interesting. I thought some of the things I did sounded kind of 'far out.' However, this might have me beat . Do you know what is in the 'serum'? I'm just so curious. Did you have any side effects later?

Thanks for sharing

Please do not take anything I say as medical advice. I am not a doctor.

Open your mind to the possibilities available to you.

An attitude of gratitude is good 'medicine,' too.

~Lyme Disease Support Group Leader~
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08/16/2008 13:19
fin24

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Im flummoxed as well---and yes to me very "out there" but I too want to learn more---what is the serum, whats in it and if you can ask your dr to really explain exactly HOW its supposed to neutralize vaccines????and what are the 6 types???

My first guess is that IF it wroked to neutralize the vaccines you had as a child thats NOT good---it would mean its affecting directly your immune system and as I know of no substance "smart" enough to talk to only some of your immune cells, it may then be decreasing other immune cells activity too.

But as its all new to me Ill await your explanation!!

thanks

Finette

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08/16/2008 19:33
krissy
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Hi Finette,

During my visit to my LLMD they gave me an explanation sheet that explains the Vaccine neutralization. I will writ it as it states.

"Chroinc Fatigue and Fibromyalgia are thought to be in some cases have been triggered by a hyper-reactive response from the body to a virus as antibody in which the brain continually fires off brain chemicals in a hyper-reactive state which can lead in some people to a weakened immune system.

Chronic fatigue and Fibro can be treated with pharmacological agents or reduces symptoms and aid sleep and with vaccine Neutralization.

V. N. is intradermal testing using fluogen vaccine, which uses a combination of the whealing response on the skin and symptom relief of the precise dose needed for each patient. Once your neutralizing dose is determined the treatment is one injection twice weekly for 6 months to 1 year as determined between you and the Doctor based on your symptoms.

The V. N. is designed to calm down your immune system so there is no longer a hyper-reactive response to a virus or antibody that is no longer present.

This is very safe and the only contradiction would be if someone is allergic to eggs or that has had a problem with flu shots in the past. There is otherwise no risk of anaphylactic reaction and the patient can administer the injections at home." LLMD J.F.

I hope this helps. I have been using this for about 8 weeks and have noticed a huge difference in my fatigue and my muscle and joint pain from the Lyme Disease. I do not have CF or FM but we all know that they are all immune suppressors. I have been off of the shots for 2 weeks due to an unforeseen surgery but am back on them now and I did notice a difference in my fatigue from being off of them.

God Bless,

Krissy

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08/16/2008 22:35
fin24

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Thanks Krissy

I was able to then go further and found that its also called autogenic neutralization or provocation-neutralization, and done very similary to "allergy shots" BUT the similarity ends there. Apparently the theory is that this works when a person's immune system isnt in OVER drive as some Drs mistakenly think but this treatment is for an UNDER active immune system--There is a fairly good book excerpt about using this for chemical sensitivities at

http://books.google.com/books?id=cbsL8cUnO_EC&pg=PA2522&lpg=PA2522&dq=vaccine+neutralization+fluogen&source=web&ots=uQRLSO_PUH&sig=B1xroO8kcMCAcu2FFeeQfDPCHnI&hl=en&sa=X&oi=book_result&resnum=5&ct=result#PPA2522,M1

its a very long URL so the book title and author = Chemical Sensitivity by Wm J Rea

and page 2522 ff which refers to using virus vaccines like Fluogen ( FLU VACCINE!!) and other VIRAL vaccines--the claim is that injections of virus material in the skin (intradermal) actually STIMULATES the immune system and while 'fighting" this invader it also happens to better notice other invaders and will hopefully attack them too.

Its based upon the Rabies model whereby vaccine is given AFTER already infected rather than the usual vaccine as preventative ( like measles vaccines in kids).

the studies since then have used FLUOGEN for illnesses that are "flu-like" or viral and hence thats when those treating chronic fatigue started to GUESS that Fluogen may help them as well. Problem is there isnt a strong basis for this leap of faith. Ive seen some researcher admit that many with CFID and "fibromyalgias" may have instead or along with those conditions underlying chronic VIRAL infections and hence have some symptom relief.BUT they say its doing nothing specific to Lyme or other stuff.

There is some LIMITED evidence there may also be a non specific or general ENHANCEMENT of the immune system which means that even if you inject Flu virus vaccine, it will cause the immune system not only to attack similar looking viruses but other things as well.

There are MANY places in several articles that states that to be really effective you need injection specific treatment just like allergy shots--meaning that if you have a chronic Epstein Barr infection you need EBV vaccine shots.

Having read most of 3 articles and the book excerpt above, it looks like for those whose immune system is "asleep at the wheel" this may wake it up BUT for many of us with OVER active immune system reaction ( especially with those so called Th1 inflammatory sx ) this could be a BAD idea

what amazes me though is that the explanation provided by your Dr ( and one he nonetheless believes to be true) isnt quite right--

He is combining TWO theories and confusing both--in this case he may have accidentally found a treatment for some of his patients but by NOT understanding what he is doing and it may place far more others in danger!!!!!

the whole brain chemistry overfiring issue is a bit separate from this allergy shot action. In the first, the theory is for now an OVERactive state POSSIBLY triggered by constant pain neuron firing and brain chemicals in unbalance possibly affected by immune system actions. yet the allergy/Fluogen shots are for an UNDERactive T cell situation.Acvtually T 8 supressor cell increase and upregulation

the only other problem I can see for now is that earlier in the year there was a shortage of flu vaccine for those truly needing it so I wonder how these docs get a supply that they can give to many patients to use over that long period of time.

there seems to be a paradox in that while the immune system is revved to fight the pathogens, there can also be a calming of inappropriate "allergic" type responses--which is exactly how allergy shots work! The problem remains however: are a persons sx related to UNDER active immune system and the Lyme and other tick bacteria running wild OR is it due to an allergy type response or even an inflammatory response?? similar but different pathways need different treatments.

Further this method is thought to work on T8 supressor cells so anyone with those cells in abnormal high levels may want to be more cautious and certainly use a health practitioner with a very strong background in immunology and allergy!!

I find it interesting that the basic principle is a LOT like homeopathy--using a substance at a certain dose level to neutralize or cancel a symptom that would occur if a different dose was used--homeopathy tries to do the same--using tiny amts of diluted substances which historically will give you the same sx if taken at full dose.

this seems to me to be a form of "homeopathy by using vaccine"

IMPORTANT--Fluogen has thimerosol--MERCURY!!! and so using it over time will cause you to have mercury levels increase---I know smaller amounts are injected but the frequency and lenthg of treatment of 6-12 months is a concern!!

Unfortunately, allergy shots have been tested and shown to be useful due to the fact that the end goal of getting the immune system to get "used to" a substance and therefore not mount a hyperallergic response is more straight forward. Easier so to speak

However this sint as true for This "provocation-neutralization" therapy -its riddled with unknowns and guessing and with a LOT of Drs who dont have a strong enough understanding of whats going on doing it--makes for a lot of risks.its often called the Miller technique after the Dr who "invented" it primarily for food allergy.

those wishing to try this should also be aware that there are studies showing that due to the treatment relying upon the patient reporting how they feel ( and not just by a hive like in true allergy shots), its very unreliable to start with.Then add the guesses about a "neutralizing dose" and the risks of taking in mercury--well its an individual decision.

those considering doing this should read the following about studies looking to see if this can work

In the early 1980s, researchers at the University of California (UC) observed similar test results in a study funded by the Society for Clinical Ecology and the American Academy of Otolaryngic Allergy (another proponent group). The tests took place in the offices of seven clinical ecologists who had been treating the patients. During three-hour sessions, the patients received three injections of suspected food extracts and nine of normal saline. Sixteen patients were tested once, and two were tested twice. In nonblinded tests, these patients had consistently reported symptoms when exposed to food extracts and no symptoms when given saline injections.

Under double-blind conditions, however, they developed symptoms with 16 (27%) the food-extract injections and 44 (24%) of the salt-water injections. The symptoms elicited by both types of injections were identical and included itching of the nose, watery or burning eyes, plugged ears, a feeling of fullness in the ears, ringing ears, dry mouth, scratchy throat, an odd taste in the mouth, tiredness, headache, nausea, dizziness, abdominal discomfort, tingling of the face or scalp, tightness or pressure in the head, disorientation, difficulty breathing, depression, chills, coughing, nervousness, intestinal gas or rumbling, and aching legs.

The results clearly demonstrated that the patients' symptoms were placebo reactions. The study also tested the claim that "neutralizing" doses of offending allergens can relieve the patient's symptoms. All seven patients who were "treated" during the experiment had equivalent responses to extracts and saline.

the most positive of all articles states that chronic illness are affected by unknown food and chemical allergy and therefore when this treatment is used to find and "neutralize" specific things and not as a general "elixir" it works best.

anyone wanting to do their own reserahc can google scholar and google " provocation-neutralization therapy" and " Miller method for neutralization".

information is power--to make an informed decsision to do or skip a treatment you have to know exactly what it can and cannot do, the risks ( bad and good) and the possible outcomes AND even most importantly the practitioner MUST know what theyre doing including understanding the mechanisms ( the "how and why it works") as well as risks involved.

F

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