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Lyme Disease ForumsGeneral & SupportDoubting my diagnoses
03/28/2011 05:48 PM
willowpoint
Posts: 41
Member

About this time last year I was diagnosed with Lyme by an LLMD that retired 5 months later.

I was put on 5 months worth of abx, 600mgs doxy daily for 5 months, 3 months into treatment Flagyl was added to the mix.

After the 5 months of treatment I did not feel any better. I felt I was improving with the abx while I was taking them but now think that was just the sense of "hope" giving me a more positive mood.

Since my LLMD retired I havent been to another one.

I went back to my PCP after the 5 months to give him my diagnoses and he immediately referred me to an infectious disease doctor.

That Doctor convinced me my diagnoses was wrong and that the abx did more harm to my body than good.

Mind you, my test results were CDC positive for Lyme

IgG P66

IgM P41

IgM P23

I also showed high levels of the HHV HBV viruses and trace amounts of rocky mount, babesia and another not coming to mind at the moment.

He told me I had a false positive test, which I had not read about before, I had heard of false negatives though.

After his lecture to me I completely dismissed Lyme and started again at phase one.

I have now been diagnosed with depression and have been prescribed pristiq and wellbutrin (have not felt different taking both for 3 months).

I dont feel depressed but have a serious lack of motivation and chronic fatigue.

I would consider some days of mild depression but its because I feel terrible and cant do the things I want to go out and do.

My worst symptoms are my head pressure (left side of forehead), tremors, and fatigue. All are affecting my life negatively.

I guess my question to the group is are you familiar with anyone having a false positive test?

[u]Does it sound as if I defiantly have Lyme based on the above info.

What would you do next[/u]?

Sorry for the long post, I am at a lose of what to do next.

broke up longer paragraphs; emphasized things. bettyg, iowa leader

Post edited by: Bettyg, at: 03/28/2011 10:53 PM

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03/28/2011 06:23 PM  Top
rowergirl2010
 
Posts: 808
Member
I'm an Advocate

Willowpoint wow you have certainly but up and down! I agree the tests are not perfect and false positives and negatives happen.

I recently also when to the infectious disease doctor and got the same speech when I had only started supplements with my LLMD no antibotics. Still this infectious disease doctor told me that the LLMD's would only take my money and destory my immune system through over dosing on meds.

Lyme and medical community controversy require us to be very involved and mindful of our treatment. Listen to yourself and what treatments make a difference in your condition. Keep a journal of your treatments and symptoms at regular intervals - this will compensate some for the treatment effect.

I have many of your symptoms (head pressure, fatigue, lack of motivation/depression like and others), but these and others have been improved by supplements, samento, and as much rest as possible.

Sunday I was talking to my parents (it had been over a week maybe two) my dad was surprised that I at least sounded better. If nothing else that is the proof I have that my treatments are at least making a difference, small maybe but a difference. This coming from an army general who still swears Lyme and the LLMD are not the answer.

Not sure what to tell other than you and those closest to you know you best. I have asked some colleagues and my boyfriend to monitor any changes in my symptoms neuro, physical, emotional, etc. I notice some, but not others at times.

I try very hard to compensate because I hate being sick, but the people who know you best see through that.

Good luck!

P23 and P41 bands positive, IBS like symptoms caused by possible candida, herbal and antiobiotic treatment, gluten free, candida diet.

I do not have a medical license so my suggestions are limited to personal experience and research. Also I am not a lawyer so if I offer advice relating to school issues it is only from my experiences as a special education teacher, my own disabilities real or Lyme induced, and research.

03/28/2011 08:09 PM  Top
waxby
waxbyPosts: 4112
VIP Member

~~~Hello willow,

~~~What you have,more than likely,is Lyme Disease Complex.That is Lyme disease and co-infections.

~~~What you need to do is drop your non-Lyme Literate IDDr b4 he ruins your life and find another LLDr who will treat you appropriately by treating your co-infections alongside Lyme if not b4 it.

~~~Lyme cannot be treated alone.It is a complex disease.It knocks your whole body/mind/spirit out of sight.You need to reballance 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/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,and 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 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 "ramp-up" slowly and carefully.

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

~~~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 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 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") 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,some with fresh lemon.

~~~Go to a healthfood store and get a sprouting kit 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 it 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.

~~~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!

```````~~~in 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~~~

~~ "The way to 'Heaven' is to bring it with you ..." -Mitchell
~~ "Sometimes, we gotta go through hell to get to 'Heaven'" -Mitchell
~~ "The way out is in" -Mitchell
~~ "A miracle speaks ...'I don't believe in Miracles.' " -Mitchell
~~ "Life is good, even when it isn't." -Mitchell
~~ "Sometimes you gotta lose to win." -Mitchell
~~ "It's easy when it's easy! Find reason, purpose and meaning when it's hard!" -Mitchell
~~ "If you're gonna think, think again!" -Mitchell
~~ "Make it so!" ...
~~ “When life do what it do, as it do-do, simply say ‘Of Course!’ (to soften life’s ‘blows’)” - Mitchell
~~ A master once said, "When embarking on the spiritual path, 'Oh Dear! There's no turning back! You've really done it now!' "
~~ “Not thoughts be your guide, rather, guide your thoughts.” -Mitchell
~~ "That which is within, and that energy entering this body/mind/spirit, causing harm and ill health, must and will be transformed into love healing energy and sent out in every direction" -Mitchell
~~ One morning ten years ago I awoke from a dream chanting over again and again, and writing this down so as not to forget ... "It doesn't matter who did what, there's nowhere else to go but up ..." -Mitchell
~~ "This life, our life, and what we do with it on this planet is “simply” a display, a reflection, of what is going on in our consciousness. The proof is in the puddin’. Look at our planet, what humans are doing to it, and with it, and to one another, and ask yourself ... ~ 'How’s this working for us/me?' ” -Mitchell
~~ "Step away from monkey mind, not tangle ... Observe ... Inhabit your higher self ..." -Mitchell
~~ "Anything is possible, but manythings you think are true, are not ... " -Mitchell
~~ "Grow where you are planted ..." -Mitchell
~~ "Change your future now ..." -Mitchell
~~ “Write your equation … 4 u r the sum of u … “ -Mitchell
~~ “We are largely a product of our environments … how’s your inner environment doing? …” -Mitchell

03/28/2011 08:56 PM  Top
ten1988
ten1988
 
Posts: 518
Member

Waxby gave you the best answer, get another LLMD. Most of the time if you have lyme you have at least 1 of its co-infections, and those should be treated first!
Lyme Igenex Test Results:

Western Blot IgM; Positive; Bands 31 (+), 41 (+),45 (IND), 66 (+)

Western Blot IgG; Positive; Bands 31 (IND), 34 (+), 41 (++), 83 (+)

**I am not a doctor and my advice is purely my own opinion which shall be regarded as such!**

03/28/2011 09:39 PM  Top
inkyblck
inkyblckPosts: 446
Member

Hi Willow, I'm really sorry about what you have gone through ... If it is of any help, I've been there too ... Once you find a good doc and get the correct treatment protocol, you'll be on your way back to good health ...

You have lyme disease ... you have rocky monutain spotted fever ... and you have babesia ( I have had them all too, with bartonella tossed in there too )

There is NO SUCH THING as "trace amounts of babesia" ~ babesia is much more difficult to erradicate than it's close cousin malaria ~ and no doc in their right mind would ever say "you have a trace amount of malaria" ...

The viruses are opportunistic ~ 95-98% of all adults have those viruses ~ The fact that your levels are high is due to the immune supression from lyme, babesia, etc ...

Rocky Monutain Spotted Fever is an easy one to treat ~ it is non-motile, which means it cannot move freely about and change forms like lyme ~ the doxy you took for 5 months might have knocked that out already ...

The babesia is a problem ~ you will need to take an anti-malarial, NOT an antibiotic ... Mepron combined w/ zithromax ( zith is used to prevent resistance to the mepron ) is the most common treatment, however, the herb artemisinin is fantastic, and I have had success with the herbal Byron White Formula A-BAB ...

And you absolutely positively have lyme ~ the IGM23 is unique to lyme ~ it is the outer surface protein of the Bb bacteria, specific to lyme disease ...

The only problem not is figuring out if babesia or lyme is causing your main symptoms ~ it could be babesia because you have treated the lyme for a few months, and when one is treated, the other will become the dominant problem ...

( that's not to say lyme isn't or won't be a problem down the line )

Please find a doc who understands ... preferably, one who will combine different herbal and traditional therapies ...

Regardless, keep us posted here .. and DO NOT EVER WORRY about your posts being too long !!! .... That's what these forums are for !!!

Also of utmost importance -

Listen To Waxby !!!!!!!

Post edited by: inkyblck, at: 03/28/2011 09:45 PM

I am NOT a "lymie" ~ I loathe that term ... I will not be defined by the vile bacteria that will very soon be out of my system ~ If you consider yourself a "lymie" right now, what will you have left when you rid yourself of the bacteria ~ nothing ??? ... Don't be a "lymie", be YOURSELF and fight it ...

...

And by the torrent on the banks thereof on both sides shall grow all trees that bear fruit: their leaf shall not fall off, and their fruit shall not fail: every month shall they bring forth firstfruits, because the waters thereof shall issue out of the sanctuary:and the fruits thereof shall be for food, and the leaves thereof for medicine. ~ Ezekiel 47:12

03/28/2011 11:17 PM  Top
Bettyg
 
Posts: 26493
VIP Member
I'm an Advocate

willow,

you've been given the typical BS runaround by infectious drs! sorry, i tell it like it is.

wow, lyme and so many co-infections!! MITCHELL/those above gave you good advise.

mitchell is EXTREMELY SICK; this is the first he's posted anylength of text, so he's a little bit better and copies his original posts from others he's done to save hisenergy and time. Smile

print off dr. corson's 2 links found in my welcome letter in signature line; hypertexts there under LYME FACTS... HEADACHES & SYMPTOMS. she details the entire body; you'll learn alot from there.

Dr. Bransfield' s Reason's for Seronegativity ( the reasons why you can test negative and still have Lyme disease

http://www.mentalhealthandillness.com/ seronegativelymedisease.html

post in llmd request forum; the link is in my welcome letter. read instructions there too

especially if you are from CALIFORNIA; i've broken up the state into sections, let me know which specific area you are from USING MY SECTIONS MENTIONED.

yes, there are snake oil folks out there galore; get your names from this board, and then check them out askingfor feedback.

you can NOT LIST DRS. LAST NAMES OR CITIES, but you can show last initial of drs. name, their specialty, or direction in state they are from!

bettyg, iowa leader

BettyG, IOWA ACTIVIST
RETIRED llmd coordinator of 6 yrs; group leader

NOTE: I DO "NOT" USE CHAT thanks!
**************************************

NO INFORMATION SHOULD BE CONSIDERED MEDICAL ADVICE.
please see my WELCOME LETTER/BEGINNER'S LINKS with important links/info galore :)

http://www.mdjunction.com/forums/lyme-disease-support-forums/general-support/2356916-bettygs-welcome-letter-wgood-beginner-links-

Any information provided should not be used to take the place of advice from your personal physician or other professional.

Information on those sites is the opinion of those who publish the sites and is NOT necessarily that of BettyG.

43 yrs. chronic lyme; 35 yrs. misdiagnosed by 40-50 drs. unacceptable; see my profile for more.
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