New Lyme info from Stanford…possible treatment

[nofuture]

I have tried it for a couple weeks. While it did work slightly when I took it when I cam off the symptoms returned.
I looked at this study. The concentration in the blood stream would have to equal around 400 times the dosage given in the instructions. At that dosage your liver will be damaged.

 

[Aidan Walsh]

I am now seeing a pattern in numerous patients & yes it runs entirely in families I think Dr. Peter Rowe is on to something great especially when he sends his patients out to be evaluated by other Doctors this explains no doubts whatsoever in my mind now exactly what is going on with

this illness no-one cannot deny that there are no Genetictraits to this illness I will prove now beyond doubts I am seeing the exact same pattens in patients as Dr. Rowe is seeing & this man is 100 % right about S.E.I.D. first some patients have plain Syncope episodes & some

have Syncope and/or P.OT.S. & the reasons are now clear, I studied numerous family photos yesterday plus I then went & studied numerous Stars who are now sick with this illness but 'all' could have different types of illness not knowing with diagnosis they 'all' need to go further

'cause there are other complications plus it will also proves beyond any doubts that one infectious agent will ever be found to be a cause & that includes different types of Lyme disease oreven as I have posted the possibilty of radiation as one cause & here is why I came to this

conclusion after studying photos of families celebrities even George Bush Jr. has these traits but which ones explains the severity onf ones illness...The photos I looked at had these patterns the majority of them had attached ear lobes plus they had thin upper lips also their

noses were think straight types I went further & searched Cher's Mother she has the same traits as her daughter does her ear lobes are also attached I beleive now that CFS so called Lyme & yes even possible M.S. are traits of 'Ehlers Danlos Syndrome' also called EDS it

explains clearly why some get well with Chiari or Stenosis or even some respond with Sinus surgeries & some get well with Lyme antibiotics & others do not people with these illnesses 'all' must be tested for EDS the 4 types the no4 type is the more serious one but every type has

complications also high intake Salt food diets are a must plus adding Salt & even in some but not allFlorinef or beta blockers or even thyroid medicines are a plus if one looks at the 'measurements' of thyroid or hearts one can clearly see this pattern but knowing which trait you

have is crucial to any recoveries I am convinced now that Genetics in this illness plays a huge role no doubts now & the complications we are seeing depends on yourGenes 100% this is one hurdle that must be looked into I will post as soon as I can on exactly what type of EDS I

have I will ask my Doctors to screen me for this they cannot now say that CFS or Lyme are phycosomatic I will now prove them entirely wrong now plus EDS with the hypermobility is not always found in all patients my understanding although I could be wrong is that type no.4 does

not have to be hypermobility in some patients to me EDS expalins so many things from thyroids to internal bleedings to 'sudden death' as well I am now looking at my daughters photos she also has the attached ear lobes she has upper thin lips also her nose is the thin

type I pulled on the skin on my elbow & I have the identical skin elasicity as depicted in an EDS photo I am convinced Dr. Peter Rowe is right he was my Doctor at Johns Hopkins in '95 he diagnosed me then with N.M.H. syncope 80/30 bradychardia but it is more it is EDS with

Syncope and/or P.O.T.S. with complications and/or infections...They will never find one cause in CFS it is no doubts a multi factoral illness it clearly to me explains why some favor in trials while others do not...The complications of EDS are enourmous & yes can be deadly in

some...EDS hypermobilty healthy lives & along came something else to push the Dominos down including traumas car accidents or even infections toxins & yes I must now admit possible mold...We will never find a one cause it is multiple...Look at your family photos get

EDS tested I will now...I read an article of a woman MP in London she was diagnosed at a young age with waste basket label CFS when she was 15 she was re-diagnosed with EDS in 2013 she eats foods now with high salt content with florinef she has a somewhat normal life

also remember with certain form of EDS contact Sport is prohibited one can die from injuries plus it is also advised by Genetisits that type no.4 you do not bear children as you pass the Gene on to them...blesses everyone ask your Doctors about EDS links you are not crazy you

are ill its in your Genes...Lyme disease just may not be chronic but certain forms of EDS are I feel Dr. Peter Rowe is one brilliant dedicated Doctor thanks to him we could never ever come as far as now...Please get tested remember CFS is an illness of exclusions...I had called my

friend last night I had asked her to check for these facial traits she responded saying
she had them all she is now looking into Genetic testing most GP's cannot order these tests it usually requires a Consultant Doctor plus privately they are very expensib=ve some insurance

policis may not cover them so please look into coverages prior to spending thousands of dollars...God bless everyone of you here be betta soon...Hang tough if you cannot cope please talk to someone even if it means calling 911 your lives are worth everything do not 'ever' give

up...We will find solutions in time x o 's p.s.After just looking at my Fathers photo he has the exact facial traits as me in EDS my Dad died from complications of Bowel disease Cancer he

always had bowl problems with certain types of foods it could be possible my Father passed these Genes on to me & other family members as well not knowing he had possible EDS...

 

[nofuture]

Absolutely! Primarily nose lips ears lose their color. I have ordered a rife machine and It is making a world of difference in the sense that I can survive this. I tried just about everything to get through this. You mention genetics and I agree with you some of us while motivated in life have comprised immune system by genes and also due to the toxicity of the food that we eat, The candida builds up and takes over.

 

[GypsyA]

So, if I take Doxycycline (400mg/day) for two weeks, but also take Desloratadine (does it have to be a prescription to get this?), I shouldn't feel so ill from the Doxy?

I'm asking because I'm going to have some dental work done on my entire mouth (removing of mercury fillings, and two crowns will be required I was told), and I need to take an antibiotic because the bacteria has caused heart problems for me. Plus, I don't want to be releasing more bacteria that's most likely hiding beneath the mercury fillings. :-/

Is there a better antibiotic to request for this work (that will help protect my heart from infection and also keep the bacteria count down)? I'm concerned with what to take because of the various SNPs I have, coupled with the Lyme.

Thanks for any thoughts!

Love,

Wendi

 

[David Hammond]

@GypsyA If your heart problems are due to streptococcus pyogenes you may want to take a probiotic containing lactobaccillus plantarum which has been shown in a number of studies to reduce the cytotoxicity, virulence and adhesion of s. pyogenes.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3067128/
http://www.ncbi.nlm.nih.gov/pubmed/23892030
Lactobacillus salivarius is another bacteria that inhibits the growth of s. pyogenes.

 

[GypsyA]

I have no idea what exactly is causing it...I gave up on doctors being able to help me. But, thanks so much for that information and I look forward to learning more and possibly experimenting to see if it makes a difference for me.

Thanks, @David Hammond !

 

[Tired of being sick]

I have been on Claritin for a couple years now for my very narrow inflamed nasal passages.
Including chronic inflamed throat that is so hard to swallow my Otolaryngologist is sending me to
a speech therapist as I clearly do not understand how speech therapy is going to cure my SEID
induced chronic inflamed throat..

Back to topic:

My opinion is no, Claritin will not cure Lyme, since ME/SEID/Lupus/MS/ETC all have many overlapping
conditions/symptoms with one another including LYME,so they are related in many ways..

For this reason alone, I am clearly a "Doubting Thomas" on whether Claritin can cure LYME or not..

 

[GypsyA]

Thanks, @Tired of being sick

After so many failed attempts at healing protocols, and doctors who "know it all" but continually fail to help us, I think most of us here are "Doubting Thomas." :-(

I'm convinced once healers fully understand how to work with our DNA SNPs, and help us balance things that are unbalanced, we'll finally be able to live more like healthy human beings. In the meantime, I guess we're stuck trying to figure it out ourselves, and with each other, through trial and error.

Thanks for your reply.

Love,

Wendi

 

[Aidan Walsh]

GypsyA look into Ehlers Danlos Syndrome with MCAD Mast Cell Activation Disorders there are only a handful of Docs who know these illnesses with some in London others in USA I want to tell you as a friend get far far far away from CFS Lyme you have chances of wellness once they diagnose the EDS type(s) with MCAD you can get your life back it 'is' treatable but no Cure...Most important is what EDS??? 9 types you could even have rare forms...'undiagnosed' Ehlers with MCAD

 

[GypsyA]

@Aidan Walsh Thanks for your reply. I've looked at EDS a few times, because my entire family is "double jointed" in various ways. We don't all have the same joints with hypermobility, and not all of us have the super soft, supple skin (I don't have that).

Anyway, you said get far away from Lyme/CFS as a way of healing, but I'm not sure if that's completely best at this point. I was *very* healthy *before* the tick bite (even though I did have the hypermobile joints). Maybe the lyme bacteria causes the EDS/MCAD to cause more problems?

I don't know?? I do know I was fine before the tick bite...absolutely no pain, chronic fatigue, etc.

Thanks for sharing and I'll look into that some more.

Love,

Wendi

 

[Aidan Walsh]

@Aidan Walsh Thanks for your reply. I've looked at EDS a few times, because my entire family is "double jointed" in various ways. We don't all have the same joints with hypermobility, and not all of us have the super soft, supple skin (I don't have that).

Anyway, you said get far away from Lyme/CFS as a way of healing, but I'm not sure if that's completely best at this point. I was *very* healthy *before* the tick bite (even though I did have the hypermobile joints). Maybe the lyme bacteria causes the EDS/MCAD to cause more problems?

I don't know?? I do know I was fine before the tick bite...absolutely no pain, chronic fatigue, etc.

Thanks for sharing and I'll look into that some more.

Love,

Wendi

You mention family joint issues not all will have same symptoms one can have soft skin also 'different forms' in EDS types even numerous Doctors who no nothing on EDS will say you do not have...No doubts not 'symptom' label' called CFS/Lyme is 'undiagnosed' Ehlers Danlose Syndrome with MCAD with regards to Lyme it is just another 'myth' hoax pushed on patients even Cher was 'labelled' chronic ebv in the 80's her including her Mother have all the facial traits of EDS...You wll see Lyme will fall out of these illnesses in fact it already is happening now...I to this day remain Negative Lyme 'but' if I sent my bloods to these 'fraud' labs they would say I am Positive...It is 'not' Lyme or is it CFS it is EDS/MCAD that is where proven Science falls now...In a way that makes me happy then we can do away with bogus sites of lies...

 

[Aidan Walsh]

You mention family joint issues not all will have same symptoms one can have soft skin also 'different forms' in EDS types even numerous Doctors who no nothing on EDS will say you do not have...No doubts not 'symptom' label' called CFS/Lyme is 'undiagnosed' Ehlers Danlose Syndrome with MCAD with regards to Lyme it is just another 'myth' hoax pushed on patients even Cher was 'labelled' chronic ebv in the 80's her including her Mother have all the facial traits of EDS...You wll see Lyme will fall out of these illnesses in fact it already is happening now...I to this day remain Negative Lyme 'but' if I sent my bloods to these 'fraud' labs they would say I am Positive...It is 'not' Lyme or is it CFS it is EDS/MCAD that is where proven Science falls now...In a way that makes me happy then we can do away with bogus sites of lies...

@GypasyA, hope things are turning around for you, a lot of patients are being told they have porphyria types AIP is one that comes up a lot so maybe ask your Doctors but remember the tests are hard to pick up unless you

are in an Acute attack, I think 3 types of the 7 are Neuro/Gut linked there are I about 3 types with skin issues some allergic to the Sun. prorphyia sucks is a Group on Facebook now they mention on there people having told they have CFS & mention EDS connections as well x x