I'm going crazy when I see more LLMD! Absolutely different opinions of experts...

MartinK

Senior Member
Messages
310
Likes
472
Hi there, I'm just starting to feel extreme shocked, disappointment, almost helplessness, after saw more experts in ME/CFS, LYME and VIRUSES.
I still think that my me / cfs is probably caused by an infection that has its pitfalls in testing, and that is causing all the cascade of my problems, so I tried to get more opinions on what treatment to approach at the moment.

What I know now from loooot of testings:
LYME - now positive only B. Miyamotoi in Phelix Phage test (Lyme treated with 5 treatments without any success, last with Disulfiram, after this are my Burdorferi, Sensu Stricto, Afzelii and Garinii negative)
EBV - more times titers on border, Lerner guides = negative, Montoya guides = positive, LTT positive, PCR negative
VZV - not rash, but high positive LTT, high IgG
HHV6 - high IgG
*Everything else is tested totally negative or I've never had it

And now what the doctors are saying:
- Klemann - B. Miyamotoi is 100% positive, when Phelix Phage is positive, want me on Mino + Azi + Disulfiram for more than 1 year.
- Teulieres - B. Miyamotoi is probably positive, need Malarone and Artemisin for it, but viruses looks like a main problem, when I had many Lyme treatments without success. He want me also on Valcyte and try SOT (supportive oligonucleotide therapy) for EBV.
- KDM - (as always) its Lyme, you need dr. Horowitzs Persister Protocol

It's scary. That means 5 doctors = 5 opinions, 50 doctors = 50 opinions....?

I'm tired of it, but I'll probably try Valcyte + SOT + Artesunate + Malarone, from the last money I have, otherwise I don't know what to do. I'm already complete bedridden last 1 year and hope die last.

If anyone comes to your mind, I will be happy for any support ;-)

cheers, Martin
 

5vforest

Senior Member
Messages
270
Likes
590
Hey Martin, thanks for posting this. I am interested in your ongoing experience because as you know, my situation is very similar.

After a certain point, it seems futile to try and treat infections that may or may not exist, and don’t seem to respond to treatment.

Your plan sounds logical, please let us know how it goes. Very interesting to hear that Teulieres is encouraging you to do SOT.
 

MartinK

Senior Member
Messages
310
Likes
472
@perrier Yeah, Disulfiram was my last treatment, probably kill many of Lyme strains, as the results say, but no improvement for me.

@5vforest Yes yes, right! How are you, any news? Have you thought about SOT as well? Id like to do it, but trying to find how to do it when Im bedridden.

@Hip Sure, all looks negative:

Cytomegalovirus:
CMV IgG 3.20 AU/mL (0.00 - 6.00)
CMV IgM 0.15 S/CO (0.00 - 0.85)

Enteroviruses by neutralization method titers:
E6 - 128
E7 - 16
CVB2 - 4
CVB3 - 16
CVB4 - 4

@ChookityPop Hey Marcus, in this thread is, what Klemann recommended ;-)
 

Hip

Senior Member
Messages
16,546
Likes
36,081
Enteroviruses by neutralization method titers:
E6 - 128
E7 - 16
CVB2 - 4
CVB3 - 16
CVB4 - 4
On the ARUP Lab enterovirus tests, Dr John Chia uses titers of 1:160 and above as indication of chronic active infection.

Each lab has its own calibration, so you cannot immediately assume the same threshold is valid on non-ARUP enterovirus tests, but nevertheless you echovirus 6 at 1:128 seems high enough to perhaps consider for active infection.
 

Martial

Senior Member
Messages
1,409
Likes
1,285
Location
Ventura, CA
Lyme disease can take a very long time to treat adequately if it's gone a while without proper diagnosis but you can fully recover using the buhner healing lyme disease protocol which is purely herbal and is what I did to put my old Lyme disease to remission. I was severely sick for years. It's unreliable to use blood tests alone for diagnosis, its better to go by clinical diagnosis symptoms, past exposure possibilities etc. The fact you have any kind of positive activity at all and no prior treatment means the bacteria is in the system. Check out the story of Dr Rawls and his recovery. He was sick for over 10 years before he got proper diagnosis and recovery. But he's all healthy now. I can discuss further with you if you want more info.
 

ChookityPop

Senior Member
Messages
481
Likes
591
Hi there, I'm just starting to feel extreme shocked, disappointment, almost helplessness, after saw more experts in ME/CFS, LYME and VIRUSES.
I still think that my me / cfs is probably caused by an infection that has its pitfalls in testing, and that is causing all the cascade of my problems, so I tried to get more opinions on what treatment to approach at the moment.

What I know now from loooot of testings:
LYME
- now positive only B. Miyamotoi in Phelix Phage test (Lyme treated with 5 treatments without any success, last with Disulfiram, after this are my Burdorferi, Sensu Stricto, Afzelii and Garinii negative)
EBV - more times titers on border, Lerner guides = negative, Montoya guides = positive, LTT positive, PCR negative
VZV - not rash, but high positive LTT, high IgG
HHV6 - high IgG
*Everything else is tested totally negative or I've never had it

And now what the doctors are saying:
- Klemann
- B. Miyamotoi is 100% positive, when Phelix Phage is positive, want me on Mino + Azi + Disulfiram for more than 1 year.
- Teulieres - B. Miyamotoi is probably positive, need Malarone and Artemisin for it, but viruses looks like a main problem, when I had many Lyme treatments without success. He want me also on Valcyte and try SOT (supportive oligonucleotide therapy) for EBV.
- KDM - (as always) its Lyme, you need dr. Horowitzs Persister Protocol

It's scary. That means 5 doctors = 5 opinions, 50 doctors = 50 opinions....?

I'm tired of it, but I'll probably try Valcyte + SOT + Artesunate + Malarone, from the last money I have, otherwise I don't know what to do. I'm already complete bedridden last 1 year and hope die last.

If anyone comes to your mind, I will be happy for any support ;-)

cheers, Martin
Can I ask how you get Valcyte? isnt it super expensive?
 

lenora

Senior Member
Messages
3,156
Likes
5,200
Hi there, I'm just starting to feel extreme shocked, disappointment, almost helplessness, after saw more experts in ME/CFS, LYME and VIRUSES.
I still think that my me / cfs is probably caused by an infection that has its pitfalls in testing, and that is causing all the cascade of my problems, so I tried to get more opinions on what treatment to approach at the moment.

What I know now from loooot of testings:
LYME
- now positive only B. Miyamotoi in Phelix Phage test (Lyme treated with 5 treatments without any success, last with Disulfiram, after this are my Burdorferi, Sensu Stricto, Afzelii and Garinii negative)
EBV - more times titers on border, Lerner guides = negative, Montoya guides = positive, LTT positive, PCR negative
VZV - not rash, but high positive LTT, high IgG
HHV6 - high IgG
*Everything else is tested totally negative or I've never had it

And now what the doctors are saying:
- Klemann
- B. Miyamotoi is 100% positive, when Phelix Phage is positive, want me on Mino + Azi + Disulfiram for more than 1 year.
- Teulieres - B. Miyamotoi is probably positive, need Malarone and Artemisin for it, but viruses looks like a main problem, when I had many Lyme treatments without success. He want me also on Valcyte and try SOT (supportive oligonucleotide therapy) for EBV.
- KDM - (as always) its Lyme, you need dr. Horowitzs Persister Protocol

It's scary. That means 5 doctors = 5 opinions, 50 doctors = 50 opinions....?

I'm tired of it, but I'll probably try Valcyte + SOT + Artesunate + Malarone, from the last money I have, otherwise I don't know what to do. I'm already complete bedridden last 1 year and hope die last.

If anyone comes to your mind, I will be happy for any support ;-)

cheers, Martin

Well, Martin, welcome to the world of modern medicine. It would appear that no one, apart from perhaps your internist, has the capability of taking the body as a whole and going from that point onwards.

I, too, am frustrated with the number of different opinions that I get from so many different doctors. My husband has thrown his hands up in disgust. To be honest, I go with my own gut feelings now and may/may not see any improvements in my problems over the next few years. I may as well throw dice or the like.

Yes, we have excellent medical care, but the confusion caused by the different opinions is just too much.
I now rely on my neurologist of over 35 years, and my internist. The rest are just outside that very small circle. They don't know me or more important than that, my body and how it reacts to different methods.

I have a number of different problems in addition to CFS/FM/ME. But a lot of them were dealt with over 35 years ago (thank goodness). One thing is a given, the more doctors you see, the more opinions you'll have. Good luck in making the best decision. Yours, Lenora.
 

5vforest

Senior Member
Messages
270
Likes
590
Lyme disease can take a very long time to treat adequately if it's gone a while without proper diagnosis but you can fully recover using the buhner healing lyme disease protocol which is purely herbal and is what I did to put my old Lyme disease to remission. I was severely sick for years. It's unreliable to use blood tests alone for diagnosis, its better to go by clinical diagnosis symptoms, past exposure possibilities etc. The fact you have any kind of positive activity at all and no prior treatment means the bacteria is in the system. Check out the story of Dr Rawls and his recovery. He was sick for over 10 years before he got proper diagnosis and recovery. But he's all healthy now. I can discuss further with you if you want more info.
The problem with this is that there's basically no way to know whether or not you'll be a responder to treatment.

There is no test for ME/CFS, and the tests for Lyme Disease are basically worthless.

Using myself as an example: at this point I am pretty certain that I had a tick bite. (Positive Babesia test, ticks are only vector except for blood transfusions.) I have IgM antibodies for Borrelia and some IgG bands. But just like Martin, I have tried all sorts of treatment without response. (Including Buhner herbs, and coincidentally, Dr. Rawls's supplements for nearly two years.)

It is really awesome that you had such a positive response to the Buhner protocol, but on the other hand, there are a lot of people who have spent years trying to treat these infections without any progress.

Personally I might try Buhner again since there is probably very little downside. Something for Martin to consider too. But I just wouldn't bet on it starting to work all of the sudden.
 

Martial

Senior Member
Messages
1,409
Likes
1,285
Location
Ventura, CA
The problem with this is that there's basically no way to know whether or not you'll be a responder to treatment.

There is no test for ME/CFS, and the tests for Lyme Disease are basically worthless.

Using myself as an example: at this point I am pretty certain that I had a tick bite. (Positive Babesia test, ticks are only vector except for blood transfusions.) I have IgM antibodies for Borrelia and some IgG bands. But just like Martin, I have tried all sorts of treatment without response. (Including Buhner herbs, and coincidentally, Dr. Rawls's supplements for nearly two years.)

It is really awesome that you had such a positive response to the Buhner protocol, but on the other hand, there are a lot of people who have spent years trying to treat these infections without any progress.

Personally I might try Buhner again since there is probably very little downside. Something for Martin to consider too. But I just wouldn't bet on it starting to work all of the sudden.
If it's going to help you'll notice between 3 months and 6 months of being on it, especially as you work your way up to max dosages you can tolerate. For people that it helps they start to notice some positive changes then and have a gradual up and down process of recovery there after. For others they might take it for a year and find no benefit which means they might want to look at other options or possible co morbid issues that are causing treatment to be less effective. Sometimes because of co infections that they require different herbs for, or parasitic issues, methylation etc. A lot of Lyme patients have methylation issues that complicate treatment recovery but yeah. You will know if the herbs are working over time but it won't be right away.
 

MartinK

Senior Member
Messages
310
Likes
472
@Hip Yes, right...this is why I tried Oxymatrine last 4 months. I experimented with doses, but without improvement. Only thing why I found - my NK cells are normal after 6 years and its possible this immunomodulator did it.

@ChookityPop Yes, Valcyte is really expensive! I keep my work as best I can, even when I work from bed - copywriting, few hours a day. I calculated that I can handle 450 mg/day if my insurance company dont help me. I read some improovement stories even with this lower dose.
Anyway, it brings me closer to bankruptcy. But I don't know what else to do...

@lenora Thank you, I hold my thumbs for you too. How looks your "protocol" now? And how starts your ME/CFS? With flu-like syn. from day-to-day like me?

@5vforest You are right! But opinion of dr. Klemann with Lyme testing was interesting - I think he is one of best LLMD in EU and he believe in PhelixPhage test 100%, and he hopes it will set a new standard and change many doctors' views on Chronic Lyme diagnosis.

How many ticks you had? I many, many...and had Lyme first time as a child...around 11-12 years. I'm not sure now, but you have Phage test?

@Martial I personally think that for herbs, it depends a lot on whether the infection is already well below the biofilm. Also many atbx are useless in combat with biofilm. Probably because someone has no response to the treatment, because the drug breaks down the biofilm only slowly or not at all. Or...because the problem is somewhere else.
 

lenora

Senior Member
Messages
3,156
Likes
5,200
Hello @ MartinK. I try not to pay attention to my symptoms of ME/CFS, etc. Trying to exercise (very carefully) isn't exactly going too well.

I had a lot of hospitalizations last year and all left me feeling very weak. I can't seem to regain the health I had then, but I'm working on it. To be honest, everything seems to be too much and I must get out to CA to see my youngest daughter this summer. Should prove interesting.

I'd be happy with just staying out of the hospital this year. I also suffered about 10 falls (wasn't hospitalized) from coming off steroids. Be careful folks, you're left feeling very, very weak. Yours, Lenora.
 

Martial

Senior Member
Messages
1,409
Likes
1,285
Location
Ventura, CA
@Hip Yes, right...this is why I tried Oxymatrine last 4 months. I experimented with doses, but without improvement. Only thing why I found - my NK cells are normal after 6 years and its possible this immunomodulator did it.

@ChookityPop Yes, Valcyte is really expensive! I keep my work as best I can, even when I work from bed - copywriting, few hours a day. I calculated that I can handle 450 mg/day if my insurance company dont help me. I read some improovement stories even with this lower dose.
Anyway, it brings me closer to bankruptcy. But I don't know what else to do...

@lenora Thank you, I hold my thumbs for you too. How looks your "protocol" now? And how starts your ME/CFS? With flu-like syn. from day-to-day like me?

@5vforest You are right! But opinion of dr. Klemann with Lyme testing was interesting - I think he is one of best LLMD in EU and he believe in PhelixPhage test 100%, and he hopes it will set a new standard and change many doctors' views on Chronic Lyme diagnosis.

How many ticks you had? I many, many...and had Lyme first time as a child...around 11-12 years. I'm not sure now, but you have Phage test?

@Martial I personally think that for herbs, it depends a lot on whether the infection is already well below the biofilm. Also many atbx are useless in combat with biofilm. Probably because someone has no response to the treatment, because the drug breaks down the biofilm only slowly or not at all. Or...because the problem is somewhere else.

With the buhner herbal protocol they can reach all stages of infection and life cycles, bio film isn't something that is really a problem with it. Thousands of people have recovered with core protocol adding additional herbs recommended based on certain symptoms or co infections. Usually people take herbs after antibiotics fail at getting them better, but some take then simultaneously with antibiotics. Me personally I went the pure herbal route because I don't want to deal with unneeded side effects from antibiotics when they are shown to not be fully effective for so many people anyways. An herbal treatment to lyme disease is just going to be all around much easier on your body and with less serious complications than the approach where doctors give you multiple antibiotics for months on end, especially with IV abx. Shorter duration of oral antibiotics like doxy isn't bad though and the CDC recommend antibiotic therapy based on symptoms and severity. I would just not really solely on that for recovery. Some doctors just way over do the antibiotics further believing they need to nuke the Lyme out of the system. Herbs still have side effects though its important to get blood work periodically will on it to check liver and kidney levels , as some rare individuals have side effects where it can raise enzyme levels. Also being aware of allergic reactions.
 

lenora

Senior Member
Messages
3,156
Likes
5,200
Hi @Martial....I guess you could say that I had a bizarre beginning with my CFS/FM/ME. I had been feeling fatigued for a long time, and just put it down to laziness on my part.

I was finally diagnosed with a pituitary tumor (fine, I took medication for many years), and then two neurological illnesses were discovered on the same MRI (brand new at the time).

After recovering from a brutal surgery for the first, I developed two viruses...really no one could get near me without me picking something up, and I just couldn't fight off the illnesses and surgical recovery. Five years later I had brain surgery, but had time to recuperate and get my energy back (?) and was at least mentally and physically prepared for the second surgery.

It turned out to be the easier of the two surgeries, but I was still battling CFS/FM and I am to this day....well over 35 years later. I was never able to return to the world in the same way, but I did carve out a life for myself...had to, really. It wasn't without meaning and I'm a very different person today than I would have been if good health had always been mine. It wasn't that I was uncaring, it's just that you're smacked in the face directly when life takes a sudden change. I put my efforts to good use and can at least look back with pride on that. As I say, it may be my greatest legacy, one I would never have done if health had been mine.

I'm old enough now to see that research is going at a much, much faster rate, there are organizations (we had none in the beginning...no computers even) so, like I said, my life took a sudden turn and I feel that it made be a better person. Much easier to say in hindsight, but it's true.

I'm still plagued with plenty of pain and exhaustion...sleep is a big problem, the usual things that we hear about so often. It's rewarding to see that meds for pain relief finally came along, but still disheartening that we don't have more in the way of research funds. Personally, I feel that it was our bad luck to come along at a time when the last thing the country wanted/needed was another immune deficiency problem....as AIDS was costing the government big time. Still is...a huge amount is diverted to AIDS research, while we sit with rather empty pockets. I have also developed other problems, but at my age one expects such things.

I did plenty during my years of suffering and I'd so like to see you younger people face an easier life in the years ahead. Make yourselves as known as possible...it's the only way. Yours, Lenora.
 
Messages
8,115
Likes
20,308
Lyme disease can take a very long time to treat adequately if it's gone a while without proper diagnosis but you can fully recover using the buhner healing lyme disease protocol which is purely herbal and is what I did to put my old Lyme disease to remission
Note: John Hopkins has established a psychedelic research arm and seem to be interested in using psycilocybin to cure Post Lyme. Studies being planned.

This article did not seem to discuss Lyme specifically, so I don't know why they think psychedelics would help that situation.

https://www.scientificamerican.com/...ists-give-psychedelics-the-serious-treatment/