Results for Lyme...

[Valentijn]

Have they shown MM can infect humans?

They've shown that a large proportion (about half?) of people bitten by a tick 6+ weeks prior had antibodies to it, so it definitely gets transmitted. All of the researchers who commented on the subject of ongoing infection indicated that it was unlikely that such a commonly and easily detected antibody reaction would occur if the bacteria hadn't been actively replicating in the patients.

So nothing conclusive yet that I've seen, but some strong indications.

 

[Thinktank]

I just received my results from the blooddraw in December.
Midichloria Mitochondrii is negative.

But.... tadaaaaaaa new infection found! Mycoplasma spp. confirmed by GIGA sequencing (PCR). Why do i feel like a kid who just received the best christmas present ever? I should be feeling sad from hearing this news...

 

[Valentijn]

But.... tadaaaaaaa new infection found! Mycoplasma spp. confirmed by GIGA sequencing. Why do i feel like a kid who just received the best christmas present ever? I should be feeling sad from hearing this news...

Knowing about it means that you're one step closer to getting healthy!

 

[Thinktank]

I hope so. I've been reading a bit about mycoplasma the last few days and it's some pretty nasty stuff.
Maybe a die-off from mycoplasma caused my severe reaction to lymecycline + tinidazole/metronidazole in the first weeks. My neurocognitive inflammation is still really bad but my physical abilities have improved immensely.
The past few mornings i've been able to walk (totally spaced out) for 1.5 hours straight without taking a break....
A year ago, before treatment that would have been an impossible task. Maybe i should try to jog in a slow pace around the park tomorrow?

 

[justy]

My LTT Elispot was also negative, and all the other Lyme tests, but as I have Bart and Cpn and terrible immune results my doctor thinks I do have Lyme on this basis and clinical diagnosis. It may well be hiding out - as ive probably had t for over twenty years.

@Thinktank - so fantastic to hear of your improvements, it gives me heart. For me I feel so frustrated as attempting to take oral antibiotics for treatment just led to my immune system going haywire and causing drug reactions to everything I now take, including herbs, painkiller, supplements etc. I haven't been able to start any treatment - and I got my results back last July!! no idea how to gt better enough to tolerate treatment and to travel for appointments etc.

 

[Daffodil]

didn't kdm used to test for those prions? not sure if he still does.

Justy....how is it going with trying to get local IVIG?

xoxoxo

 

[justy]

didn't kdm used to test for those prions? not sure if he still does.

Justy....how is it going with trying to get local IVIG?

xoxoxo

Hey Daffodil... I have been waiting for an appointment with a clinic in London for a few months. The appointment is the end of February - they are the only place I can find that offer it, I don't know if they will agree to do it or not - it is very expensive there and still a four hour drive from my home - but only a fraction of the 10 hour drive to Brussels!

They offer either weeksly sub cut or monthly IV GG. I hope they wont mind wwworking with me if I also have another doctor.

How are things going with you?

 

[vli]

That's really interesting Justy... are you talking about this place? http://www.thelondonclinic.co.uk/

 

[Daffodil]

hi justy...well things are a little weird with me. my energy is very very low....I am sleeping most of the day and up all night. I think my brain might be a little better sometimes, although not as good as a few weeks ago. all I can say is, something is going on. I do have diarrhea with these antibiotics but not the life-threatening kind. I have again stopped the Samento altogether..even 1/4 drop was too troubling.

I am trying to tell myself that I am sick cuz I am on the antibiotics and maybe bacteria is dying but who knows. sick on them, sick off them ...same ol' story

I am supposed to go to Belgium in early march for more testing. Maybe some tests will be better so I will know something is happening.

I am now worried about Ebola and terrorist attacks too lol

I hope you can keep calling the London clinic to see if there are any earlier cancellations...never hurts to try

xoxo

 

[Helen]

Any one else tested positive for Midichloria mitochondrii?

Yes. I just got a letter from my doctor. A new PCR test performed by the same lab as yours (University of Liège, Belgium) found the bacterias (or their DNA). He wrote that they , so far, don´t know the pathological significance of the infection but he will keep me updated. He says that it looks like the bacteria that live in our mitochondrias could induce fatigue and reduction of energy.

@maryb , @Valentijn and @Hanna , the Redlabs uses the lab at University of Liège for this analyze.

There are several studies published on PubMed about the bacteria.

I think we do need the engagement of Dr. Lipkin too, to get all possible pathogens that can keep us sick discovered .

 

[Hanna]

@Helen, that's interesting ! Please keep us updated.

 

[Valentijn]

Yes. I just got a letter from my doctor.

What was your time frame for getting results?

 

[Helen]

Please keep us updated.

I should mention that I was proposed a treatment, but I will not post about it as it is experimental but not toxic. There hasn´t so far been any studies on treatments but my doctor wrote that it is his duty to try to cure me without doing harm. This clear message warmed my heart. I suppose that anyone diagnosed with the bacterium will also get the proposal. If not PM me.

 

[Helen]

What was your time frame for getting results?

The blood sample arrived at the lab December, 16th and the letter with the result was sent to me last week.

 

[physicsstudent13]

I wonder if acetylcarnitine+alpha lipoic acid can help mitochondrial genesis?
http://www.ncbi.nlm.nih.gov/pubmed/15591008
I'm not a doctor though and this is such a complex process that to try to modulate it might be risky.

I had a 0.11 Lyme Igg,Igm with 0.80 being the positive cutoff so I'm not sure if it's conclusive

 

[Thinktank]

@physicsstudent13 , you really should see a LLMD.

You can ask ILADS for a list of LLMD's in your area here: http://ilads.org/ilads_media/physician-referral/

 

[physicsstudent13]

I hope so. I've been reading a bit about mycoplasma the last few days and it's some pretty nasty stuff.
Maybe a die-off from mycoplasma caused my severe reaction to lymecycline + tinidazole/metronidazole in the first weeks. My neurocognitive inflammation is still really bad but my physical abilities have improved immensely.
The past few mornings i've been able to walk (totally spaced out) for 1.5 hours straight without taking a break....
A year ago, before treatment that would have been an impossible task. Maybe i should try to jog in a slow pace around the park tomorrow?

I'm sorry to hear about your bad reaction. I tend to believe in antibiotics after having several infections. Yes definitely exercise can treat potential heart disease, liver disease, diabetes which leads to blindness, kidney failure, brain damage. I'm finding tinidazole a bit difficult but it is supposed to kill the cyst form of giardia which you can get from water for instance which metronidazole cannot.
I'm not really sure about the long term effects of antibiotics especially on the liver and kidneys and in the case of rocephin the gallbladder/liver. there are also other drugs in the nitroxazole class, I'm not sure how effective they are for Lyme's disease
you might try piracetam to increase oxygenation to your brain

 

[physicsstudent13]

@physicsstudent13 , you really should see a LLMD.

You can ask ILADS for a list of LLMD's in your area here: http://ilads.org/ilads_media/physician-referral/

I have all the terrible symptoms of this horrific disease, hearing loss, humming sounds, facial palsy, loss of vision, blurry vision, exhaustion, knee pain, terrible brain fog, seizures, sleep disorders

 

[physicsstudent13]

http://en.wikipedia.org/wiki/Cefuroxime
I wonder if there are other antibiotics that KDLM recommends like these 5th generation medicines?
I still cannot explain these seizures which seem to be myoclonic and the hearing loss, vision loss and the humming sound I was hearing which are Lyme's symptoms.
And what is the mechanism by which klonopin+gabapentin helps this?

 

[Hanna]

@physicsstudent13 sorry to bump in here, but I saw on an other thread you are taking 2gr/day Tinidazole in combo with Doxy and Roxy. I hope you take all the precaution (wether you have the knowledge or have an LLMD with you on board).
Drugs like Tini may lead to neuropathic problems, especially with audition. I have experienced after my third round of Tinidazole (each time with 3 weeks off the drug), neuro pain with new weakness in legs. And one month later, i am still struggling with it, unable to remain standing, standing-up etc.
Perhaps it is not linked but perhaps yes.