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06/19/2011 07:17 AM

Doc didn't disclose my positive Lyme test 3yrs ago

punkintoze
Posts: 13
New Member

Good morning, everyone!

I have been ill for a few years with various lupus-like issues and chronic anemia and low platelets. My latest labs show elevated bilirubin.

I recently went to a new rheumatologist and have been looking at my new labs and comparing to my older labs that I have copies of.

It appears that I tested positive for Lyme almost 3 years ago, but this was not brought to my attention, nor was I treated.

I think my old rheumatologist missed it, because the lab slip is rather confusing. Still... she should be pretty well-versed in lab slips.

I have been getting more and more ill and my ANA count has been going up. I'm 41 with 2 young children.

My husband wants to get an attorney. I'm not sure what to think. I really liked that doctor, and feel bad about thinking of pursuing this.

If I do pursue it, I only have a month to do so before the statute of limitation kicks in in that state.

What would you do? Sad

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06/19/2011 07:44 AM
waxby
waxbyPosts: 4811
VIP Member

~~~Hello Chris,

~~~You do have Lyme Complex Lyme Disease!

~~~What ever you do, you must get a LLDr, Lyme Literate Dr, and begin a treatment program yesterday and treat at least two months past no symptoms!

~~~Your story is ALL TOO common of what happens to SO many of us within this crippled medical system.

~~~The IDSA and CDC are largely resposible for this.

~~~Someone will be with you shortly to guide you toward a LLDr.

~~~from my straight jacket~~~out on a limb~~~lookin like a cocoon~~~hangin by a thread ~~~waitin for a butterfly~~~under the moon~~~Lovey-Dovey~~~Mitchell


06/19/2011 09:34 AM
jjbluemountain
Posts: 106
Member

I think docs are afraid of positive lyme tests because that would show how many people are really walking around with this disease.

Can you post your result breakdown (like the numbers and bands)? One thing MDs try to use to get out of it is by saying it is a false positive. You would need a copy of your MD's office notes.

perhaps the rheumatologist contacted an infectious disease idiot who told them it was a false positive. That is what happened to me.

I had my MD run tests for most of the crossreactives and they were negative...so have you had all those tests too?


06/19/2011 09:54 AM
punkintoze
Posts: 13
New Member

Thanks, guys! I appreciate your help.

I don't have any detailed lab notes yet, but I'm going to get everything ASAP. The printout I have just says "LYME SCREEN IGG & IG - *LYME AB CONFIRMATORY TEST ORDERED BASED ON EIA RESULT." (The * means "out of range" or positive.)

I think it was missed because it also says NEG, but the NEG is in line with the normal values column - saying that NEG is the "normal" result. An * means abnormal result, and it has a * in front of it. I can see why it was misread.

In the meantime, I shot an email to my new rheumatologist telling her about my discovery and requesting that we look into this further and treat it ASAP.

I posted about this last night, but is it possible that the fact that I had parvo within a few weeks of the test caused the Lyme AB test to be a false-positive? Probably not, right?

I was wrong about the statute of limitations. It's 3 years from when I discover the problem I believe (not 3 years from the blood test), so I have time to look into this.

I bet my "fibromyalgia" is a really Lyme. How frustrating.


06/19/2011 09:55 AM
punkintoze
Posts: 13
New Member

JJBluemountain - I'm sorry that happened to you with the false positive!

Waxby - Thanks for your post on here as well as my other thread. Smile


06/19/2011 11:46 AM
waxby
waxbyPosts: 4811
VIP Member

~~~Hello Chris,

~~~Speaking of your diagnosis of "fibromyalgia" here's some info for you to help get you started ...

~~~Hello Newbies ...

~~~Lyme cannot be treated as a lone entity.

~~~Lyme Disease is a complex disease, and so, Lyme Complex Disease, or LCD, most often with any number of co-infections that must be treated before Bb, Borrelia burgdorferi, or Lyme, one by one, or simultaneously.

~~~LCD knocks your whole body/mind/spirit out of sight. You need to reballance, and rehabilitate your whole being!

~~~It IS important to realize that each of our needs, and symptoms, are unique and require our careful and discerning, educated, well read, attention.

~~~And there is no magic cure or magic DR. or magic clinic. And there are a lot of "snake oils" and "snake oil salesmen" out there; so be cautious!

~~~Some find relief or remission from conventional & pharmeceuticals alone or naturals &alternatives such as herbs etc alone or a combination of any.

~~~We each have our own combination lock, code, puzzle, conundrum, or mystery to figure out.

~~~Here is another of the main issues with Lyme Dis-ease...

~~~If you do not see a Lyme Literate Dr (LLDr), and your tests APPEAR negative,( or positive); they may treat you for whatever symptoms that your symptomology SEEMS to fit.

~~~And in most cases, if you are or are not being treated for the actual culprit, Lyme Disease,the phantom treatments for mocking symptoms will do almost nothing or nothing at all or even cause more problems.

~~~It can even damage, such as being treated for MS, which Lyme mocks, with steroids etc that will only intensify the Lyme invasion and wreak additional havoc inside of you and on your life.

~~~Some have even been prescribed surgery, by a non-LLDr for a Lyme mocking "phantom" problem and the surgery, in most cases, failed.

~~~Lyme dis-ease can mock 300 dis-eases and exhibit hundreds of symptoms!

~~~However it remains important to carefully rule out other possible problems.

~~~But, let a LLDr do this to save you many middle steps.

~~~If you are working with, WORKING WITH (as in not blindly following) a Dr, hopefully a LLDr, Lyme Literate Dr, OR only with yourself as your healer; if you so choose for your own reasons, pay careful attention to your reactions to each potential remedy.

~~~If the reactions are too intense, and you are monitoring and comparing them to possible alergic response and...

~~~having carefully ruled out adverse alergic response, as many reactions are the "herx", try trimming down,ramping down, dosages to 1/2 or 1/4, even as much as 1/8 the dosage in some cases, to find your personal, more tollerable, not overly agressive, therapeutic dosage, and then "ramp-up" slowly and carefully.

~~~And always take probiotics between doses of antibiotics. 2 hours before and after dosing are a good rule-of-thumb.

`````````````````````````````````````````

~~~There is a general consensus to get a superior diet in order.

~~~That is, no junk. Every one with any sense whatsoever knows what that is.

~~~This means no sugary sodas or even diet ones or any carbonated dead beverages. Pure junk!

~~~No processed sugar either. No empty calories!

~~~Only nutritiously dense foods in a wide variety of the rainbow such as fresh sprouts, purple and green cabbage and mixed greens salads, mixed berries,etc.

~~~Mostly if not all vegetarian.

~~~Mostly if not all raw-fresh unheated fruits and vegetables are raw.

~~~Little to no dairy.

~~~Cut out gluten , WHEAT, RYE, OATS, BRAN, if you happen to be gluten intolerant as many Lyme Patients are.

~~~Eat whole grains and brown and wild rice blends, quinoa, amaranth, buckwheat, etc.

~~~Raw nuts and seeds (raw, so as not to destroy living enzymes and essential fatty acids) such as walnuts, almonds, pumpkin and sunflower seeds. Beans.

~~~Cooled down to warm (under 110 degrees) with some almond milk and a couple of ice cubes etc (not hot,so as not to destroy living enzymes in raw honey and raw choc if added.) You should be able to hold your finger in it and just feel the warmth, not hot...

~~~Green tea, red (rooibos) tea etc, almond milk, etc, raw honey, raw cocoa powder. Yum!

~~~You could vigorously stir into the warm mix a Tablespoonful or two of some organic chia seed(from healthf and drink it through a straw, unless you want a chia pet mustache!

~~~You could also vigorously stir in some brown rice protein powder (from "NutriBiotic"Wink and brewers yeast(from "Lewis Labs"-no this is not the yeast that contributes to yeast-growth problems, and is very nutricious and a tasty brand.) And also some raw maca powder.

~~~I make a mixture in equal amounts of brown rice protein powder, raw maca powder, and brewers yeast and use a couple of tablespoons of this mixture in my breakfast tea.

~~~Plenty of water, between meals, some with fresh lemon, for detoxifying, one simple, of many methods critical for consistently, persistently, clearing toxic load from our bodies. A good rule of thumb for quantity of water to drink is to divide your body weight number in pounds in half, and use that number for number of ounces of water to drink each day.

~~~Go to a healthfood store and get a sprouting kit (or google Now Foods, they have sprouting jar and seeds) and make your own mixed sprouts at home in your kitchen.

~~~Try 2 Tablspoons brocolli, 2T funugreek 10T(5oz) mung sprouting seeds in a half gallon sprouting jar.

~~~In three to five days, depending on the temperature, Winter or Summer, and poof, nutriciously dense food.

~~~They'll keep for a week in the fridge in airtight container. Leave uncovered overnight in fridge the first night to chill and breath out initial condensate and then cover and leave covered. Don't rinse on last day to keep on dry side to keep longer in fridge.

~~~Start a new batch some days before they run out to keep a constant supply for sandwiches, salads, etc. Add it to a big mixed greens salad.

~~~Omega 3 fatty acids and fiber rich seeds such as chia (whole or ground) and freshly ground flax-freshly ground flax as the omegas become unstable after some time after being ground, and flax is undigestable whole. Unheated so as not to destroy vital omega fatty acids and living enzymes.

~~~I use 2 tablespoonsful of whole organic flax seed and grind it fresh in a coffee grinder each time I use it. I stir this vigorously into 16 ounces, or more,of tepid water 30 minutes before some meals and before bed.

~~~I continue to drink more water in between meals away from food for better digestion and elimination.

~~~Drinking liquids with meals only dilutes your food not allowing it to digest more properly.

~~~Drinking this flax/water mixture gives it a jump ahead of meals in order to capture more bile and transport it out of the body, so the bile is not recycled back into your body, as is what happens to the bile, thus ushering the bile's excess cholesterol and toxic load out of the body. Your body will readily produce more fresh unpolluted bile.

~~~Flax (as well as chia) also contains essential omega 3s and 6s in a healthy proportion of 3 times more 3s than 6s. Most diets contain way too many 6s than 3s.

~~~Corn oil has 46 x more 6s than 3s, very bad. Olive oil has a ratio of 3-6s to 13-3s, very good. We tend to get way more 6s than 3s, not good.

~~~Your body will convert these essential fatty acids into necessary DHA and EPA.(See Wikepedia omega 3 fatty acid.)

~~~Organic every thing as much as possible.

~~~No harmful habbits such as smoking etc, or alcohol,which is very bad for many Lyme patients.

~~~Just as an example, out of hundreds of potential remedies, presently I'm doing MMS, for eleven months now, and in alternating days, frequencies, amounts, and combinations,

~~~teasel, samento, venus fly trap, banderol,

~~~smilax, japanese knotweed/resveratrol, andrographis, "Buhner's Herbs from his book "Healing Lyme"

~~~Dandelion and parsley extracts, mangosteen extract, olive leaf extract, grapefruit seed extract, bromelain, systemic enzymes, nattokinase, Graviola, Sangre de Drago, Jatoba (these three are South American rainforest herbs)

~~~vits, mins, supps, baking soda, superior diet.

~~~And for about a year now 100mg a day or every 2nd, 3rd, or 4th day, week, or month of minocycline.

~~~However, for now, I am only doing the MMS and at one to three drops one to three times a day, even skipping a day or more as I am very ill and for many years, and I think I am doing too much too soon for my level of infection.

~~~And now doing HBOT, Hyperbaric Oxygen Treatment, IM Rocephin, Myers' Cocktail IV, Medical/pharmeceutical grade supps, vits. nono/coloidal silver.

~~~However,(update) now,including MMS at five drops properly prepared several times a day and also ten drops properly prepared and administered through my skin and directly into my bloodstream with DMSO,google it, I am doing Minocycline,Azithromycin,Rocephin IM,Rifampin,Armour Thyroid,HBOT(hyperbaric oxygen treatments),Myers Coctail IV plus glutathione (vits,mins +glutathione) twice a week,Byron White's A-Bart and A-L, medical and pharmeceutical grade foods vitamins and supplements,coloidal silver,meditation,prayer post thread,yada yada...

~~~Your symptoms will change, come and go, se-saw, roller coaster, scare you, tickle you, nauseate you, turn you shapes, colors, and sizes, make you laugh, make you cry.

~~~Hold tight! This is some Amusement Park!

~~~This forum is your refuge. We "get" you. USE IT!

~~~And remember, "this is a marathon and not a sprint." Be the turtle, not the hare. Moving too quickly could be potentially harmful.

~~~Chronic, persistent Lyme Dis-ease can take a very long time to diminish towards remission. It must be approached carefully, systematically, persistently, patiently...

~~~And...Never give up!

`````````````````````````````````

~~~On ramping and pulsing...

~~~When a remedy dose hits too unbearably hard, your dose may be too high, and that is after making certain this is not an alergic reaction.

~~~Take a day or two or three off if you must, until the "Herx" calms down to a reasonably, tollerable manageable, level, and begin again, every other day, or more, if you must, thus pulsing...

~~~Begin at a lower more tollerable dose such as 1/2, 1/4,or 1/8 the dose thus ramping down.

~~~If one more dose hits too hard again, take every other or third day off, pulsing, until you arrive at a more tolerable Herx event level and tollerable therapeutic dosing level.

~~~As your Herx effect lessens over time, begin turning up the volume by adding back some dosage level, ramping up, and then closing the pulsing gaps.

~~~And always take probiotics between doses of antibiotics. 2 hours before and after dosing are a good rule-of-thumb.

~~~Unfortunately, feeling worse before feeling better is par for the course, but is a useful guage for pulsing and ramping and consistently, presistingly, keeping fire under the critters butts.

```````~~~from my straight jacket~~~out on a limb~~~lookin like a cocoon~~~hangin by a thread~~~waitin for a butterfly~~~under the moon~~~Lovey-Dovey, Mitchell~~~


06/19/2011 12:34 PM
JohnPatrick
JohnPatrick  
Posts: 397
Member

Hi Punkin

We live in a Lawsuit crazy world, There are far to many shark Lawyers out there suing people for frivolous reasons

What you mentioned is that you had a positive blood tests 3 years ago and were not even notified by your Doctor

To me that seems like gross negligence,, especially when dealing with a disease like lyme that keeps progressing and become much harder to treat as time goes on. 3 years have passed and you were not even told that you had lyme

I can imagine you went through a lot of needless suffering not knowing what was wrong with you, This disease can mimic over 300 diseases leaving many Drs baffled

A Doctor like that should be held responsible for this negligence

If you would have known 3 years ago you could have started treatment right away

There is really no excuse for this other then your Doctor no matter how much you like him or her did not do her job

I had a similar experience with my son on some blood work, He tested positive for ebstein barr and we were told that the tests were all negative until i made another appointment with a different Dr a month later and was told that he had mono

I was mad, but you cituation is far worse considering the valuble time that passed that is crucial in treating a disease like Lyme

My younger son was treated in the early stages of the disease and did one month of doxcy and has not had one problem since thank God

That is far from the norm from those who develop a more chronic form of the disease either because of delayed treatment due to these bogus blood tests that are a complete joke and they were not treated early , or they were misdiagnosed

Or they were not treated long enough after they were diagnosed

We have a broken medical system, So many are suffering today because of Ignorance and negligence

How can a Doctor at that level miss that you were positive for Lyme

The Good thing is at least now you know what you are dealing with, You should have known 3 years ago

I would call a lawyer to see what they think about your case

This disease kills people

Have a great day John


06/19/2011 12:59 PM
punkintoze
Posts: 13
New Member

Waxby - Thank you! That's a lot to take in. I appreciate the info! On a good note - I'm already gluten free (no wheat, barley, rye).

Also, I avoid dairy, and I make 'cheese' out of raw cashews - so I do get a lot of raw cashews and almonds. I have a juicer and plan to get back into juicing. My fave is carrot, cucumber, spinach and lemon. Smile

I could certainly reduce my sugar intake a bit more. I try to use alternative sugars because I'm sensitive to cane sugar. I like agave and palm sugar.

I eat meat, but not a lot of it. I got a couple of raw cookboos for Christmas last year, so I'm thinking it's time to put them to use. Smile

Thanks again.


06/19/2011 01:03 PM
punkintoze
Posts: 13
New Member

John - Thank you for the post. You put into words how I'm feeling. I appreciate the advice.

I've never even thought of suing anyone before. It's just not something I look to do. But you are right, Lyme is not something to let fester for 3 years!

I'm sorry about your son, but so glad it was caught fairly quickly!

Thank so much!


06/21/2011 05:53 PM
ChuckG
Posts: 76
Member

"LYME SCREEN IGG & IG - *LYME AB CONFIRMATORY TEST ORDERED BASED ON EIA RESULT."

The "*LYME..." means that a Western Blot was supposed to take place to confirm the EIA/ELISA positive. It is called "Reflex to Western Blot".

If the WB came back negative then your doc would have considered you negative.

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