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Lyme Disease ForumsGeneral & SupportMy Progress! What do you think?
04/02/2012 08:46 PM
Emichuu
EmichuuPosts: 8
New Member

LAB TESTS

Complement component 4 (C4a) (needs to be freezed) 134 OKAY

Cyclic Citrullinated Peptise (CCP) 4 OKAY

Matrix metallopeptidase 9 (MMP-9) 263 OKAY

Vascular endothelial growth factor (VEGF) 25 LOW

Anti Diuretic Hormone (ADH) 0.8 EXTREMELY LOW :Medication to replace, Desmopressin:

Transforming Growth Factor-Beta 1 (TGF-B1) 11813 VERY HIGH :Medication to lower, Losartan:

HLA by PCR (genetic test) - 4-3-53 = MULTI SUSCEPTIBLE / 15-6 = CHRONIC LYME

Plasminogen activator inhibitor-1 (PAI-1) -5.6 OK

Melanocyte Stim Hormone (MSH) - 17 VERY LOW

Vasoactive Intestional Polypeptide (VIP) 43 OK

Eosinophilic Cationic Protein (ECP) 11

CD57 - 36

Nasal Culture - STAPH, Resistant to Penicillin-G, Clindamycin, Erythromycin.

http://www.healthhype.com/lab-tests-for-staph.html

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Treatmeant:

Low Glycemic Index, Low in sugars, Whole grain wheat only, and Organics.

Meds are Losartan, Metoprolol, Desmopressin, and Welchol (detox biotoxins) and later ABX.

Gabapentin, Chlorella, Probiotics, Krill Oil, 5,000 ut Vit D, Jolessa, Percocet, Flexiril Promethazine*, Zofran*

* = Occasionally, not daily

http://www.survivingmold.com/docs/ biotoxinpathwayritchieshoemakermd.pdf

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Symptoms:

Pain in feet and ankles upon standing/walking, Flu-like feeling, Extreme blotchy flushing/rash on different parts of the body, especially face, chest, and back (releasing histamine),

Poor circulation, Sleep disturbances; possible apnea, Insomnia, Back pain, Different types of chest pain, Runny nose, Sore throat, Sore jaw, IBS symptoms, Muscle pain, All over pain; burning pain, shooting pains, sharp pains, dull aches,

Back pain; lower-mid-upper, Random trouble swallowing, Severe goosebumps, Palpitations, Passing out, Near passing out with loss of hearing and sight, Talking aggravates symptoms sometimes,

Lower neck pain, Lots of nausea and occasional vomiting for no reason, Excessive fatigue, Occasional stomach pain, Sensitive stomach to touch, Problems urinating, Sickly weak arm,

Stiff and achy fingers and wrist, Random muscle twitches, Arthritis in spine, Joint pain in elbows, hands, knees, ankles, Forgetful/Difficulty concentrating/Mixing up words/Using the wrong words,

Dry icky mouth, Red swollen knees that are hot to the touch, Unstable pupils (fluttering), Extreme bloating, Shortness of breath, Horizontal nystagmus, Swelling in feet, Pooling from abdomen down and in arms (POTS),

Shaky/Tremors/Chattering, Red hot ears (histamine?), Reflux, Daily voice loss, Low libido, Headaches/Migraines,

Numbness Carpal tunnel in arms mostly in non dominant hand at rest or when holding something,

Sharp random spikes of pain, Burning muscle pain, Dizzy, Overheated, Blurry vision, Frequent urination, SVT/IST, Fluctuations in BP (POTS), Ringing in ears, Exhaustion even after sleep,

Occasional cough, Sensitivity to light. Waking up gasping/coughing,

Pain in fingers, Slight swelling in face occasionally,

Occasional swelling and/or pain under chin where lymph nodes are,

Sore/droopy left eye has happened a few times, Seeing sparks of blue light that are not from headaches and are seen with open and closed eyes.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Notes:

Suspected to have Lyme and Bartonella based on symptoms and indirect labs.

Symptoms began nearly 10 years ago, tick bite was 14-15 years ago.

Highly susceptible to other infections.

6-9 months of antibiotics and other treatments should improve symptoms.

Hyperbaric chamber may be an option.

Post edited by: Emichuu, at: 04/07/2012 03:02 AM

Reply

04/02/2012 11:24 PM  Top
Bettyg
 
Posts: 26546
VIP Member
I'm an Advocate

hi em Wink

may i suggest you COPY your entire detailed medical notes and PASTE in your profile; upper left hand corner? that way this info is available quickly to any of us looking at your profile to answer questions you might have.

10-15 yrs. sick; not a llmd but think it's going to take WAY LONGER than 6-9 months and alternative therapies.

interesting he mentioned HBOTherapy at the end.

so many tests i had not heard of even; up for others input.

best wishes, hugs/prayers,

bettyg, 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.

04/03/2012 11:10 AM  Top
pampe
pampe
 
Posts: 1254
Group Leader

Are you asking a question or posting so we can get to know you????

Pam

Pam
Group Leader

(I am not a doctor. I am not involved with insurance or the government. Any advice I give is purely from my own experience and/or research. Always discuss your healthcare concerns with an appropriate medical professional.)
~~
2003 BB IGG/IGM + (told it was negative)
~~
May, 2012 IgeneX (CDC positive)
~~~~
MTHFR= homozygous A1298C
~~~~~~
October 2012 WB Igenex CDC Positive
~~~~~
Last WB (2/2013):
CDC positive
~~~
My story can be found on the Group Leaders page.

04/03/2012 08:07 PM  Top
mem1605

Is this a question?

04/04/2012 02:09 AM  Top
waxby
waxbyPosts: 4121
VIP Member

~~~Helo Emichuu,

~~~My 12 year to date Lyme Complex has progressed through and passed bye-bye a hundred symptoms!

~~~I'm tangling with this most extremely stubborn final? symptom debilitating crippling weakness!

``` 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

04/06/2012 12:09 AM  Top
Emichuu
EmichuuPosts: 8
New Member

Hello!

I'm sorry if I wasn't clear, it took me a long time to put all of that together and I stayed up longer than I should have.

I'm showing my progress and I'm asking for opinions if you don't mind the long read, does all this look correct, what are your thoughts?

I just want to make sure I'm on the right path here. I think my LLMD actually said we could kill it off in 6 months, I don't remember if he meant Bartonella or the Lyme. I'm having a really hard time recalling anything right now.

So sorry for the late reply, I've been in the hospital sick with pneumonia, organism unknown.

I am pretty shocked by it, I didn't think you could get pneumonia so easily like that. I've been started on Levaquin.

I hardly ever get a cold and I don't go out much, it was pure luck that they caught the pneumonia, I went to the ER expecting dehydration.

I've been told that I'm probably more sick than I think but it's been hard to grasp.

Post edited by: Emichuu, at: 04/06/2012 12:11 AM

used quotes to enlarge text. bettyg, leader

Post edited by: Bettyg, at: 04/06/2012 01:12 AM


04/06/2012 01:18 AM  Top
Bettyg
 
Posts: 26546
VIP Member
I'm an Advocate

em, sorry to read you've been in the hospital.

suggestions for sensitivity to lights: what are you doing for this?

pc...contract/brightness WAY DOWN so it's comfy on your eyes;

keeping shades down/drapes pulled as much as possible;

i have the DARKEST RX sunglass lenses possible;

when it's extra bright, i wear NOIR/no infrared wraparound sunglasses OVER my RX sunglesses; at times it feels like i have NO sunglasses on at all.

if you are on DOXY antibiotics, it will cause you to get SUNBURNED; so wear long sleeves/pants, gloves when driving.

i can burn in 5-10 minues bad!

others will need to chime in other things; that is the worse for me....all lights, glare, and reflection are like looking directly at the sun; PAINFUL!

hugs/prayers to get the help you need.

bettyg, 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.

04/06/2012 06:29 AM  Top
waxby
waxbyPosts: 4121
VIP Member

~~~Hello Emi!

~ Please click to go here for information and support … ~ http://www.mdjunction.com/mem/117464

``` ~~~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 ```

~~ "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
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