Lyme Diagnosis

[Aerose91]

That's great to hear, I'm really happy for you. Man there are so many protocols; Marshall, Cowden, Buhner, Klinghardt...

How do you guys chose which one to follow?

 

[Valentijn]

It may indeed be true that Lyme cannot claim PEM as a symptom; however, I would be reluctant to base that determination on the voracity of studies published to date.

I would agree on that point. Certain researchers and clinicians excel in denying ongoing symptoms, especially after treatment

But if Lyme patients actually had PEM, we'd still be hearing a very different story from patients and the real specialists who are treating them long-term. But the reality is that patient forums have no mention of anything sounding like PEM, nor do the books written by the real Lyme experts.

 

[Dufresne]

I'm on the Marshall Protocol - I herx on olmesartan/benicar alone (because it appears to reactivate your immune system and weaken the bacteria). I was taking pulsed minomycin last year to try and hurry things along but so far this year I have just used apolactoferrin to break down biofilms.

It's been a very long road, but I am seeing some good, sustainable improvements.

I'm interested in Marshall's proposed mechanism of immune suppression. I've tested low vitamin D 25 and high D 1,25. There's no question I'm positive for borrelia, but bacteriostatic ABX don't produce a herx for me, while bactericidal ABX do. This could indicate that my immune system is seriously compromised, and perhaps due to the reason Marshall suggests.

The reason I haven't experimented on myself to confirm the theory to my satisfaction is because of the blood pressure lowering effects of olmesartan, as low BP is a significant complication for me.

If I might ask:
How quickly after you started on Benicar did you notice a herx?
Did you have to lower your vitamin D 25 through diet and strict avoidance of sunlight before you experienced a herx?
Did you have any circulatory problems prior to starting the protocol?

Thanks, and good luck on your continued success.

 

[Dufresne]

I would agree on that point. Certain researchers and clinicians excel in denying ongoing symptoms, especially after treatment

But if Lyme patients actually had PEM, we'd still be hearing a very different story from patients and the real specialists who are treating them long-term. But the reality is that patient forums have no mention of anything sounding like PEM, nor do the books written by the real Lyme experts.

I've come across people suffering PEM who consider themselves "Lyme" patients." Though, I agree with you that it is a fairly rare symptom on Lyme forums. But this could just merely reflect the difficulty diagnosing borrelia infection coupled with the fact that anybody with PEM is most likely going to be summarily diagnosed with ME/CFS.

Yet KDM specializes in ME/CFS (assuming PEM is present) and apparently a good percentage of his patients test positive for the infection. From this I'd have to deduce that either it is possible that "Lyme" can lead to PEM, or borrelia infection is a hell of a lot more common than almost anybody could have thought.

 

[Aerose91]

What test did you guys use for babaesia/bartonella?

 

[duncan]

Valentijn, I think we must frequent different Lyme Forums. I've communicated with Lyme sufferers who might not be familiar with PEM nomenclature, but speak in detail to paying a price for physical or mental exertion. It might not be PEM, but it approximates it in my opinion, at least in terms of the effect it levies on the sufferer.

Also, as far as Lyme experts go, I've yet to find one that can explain all the weirdness that comes with TBDs. Many of the real good ones are busy trying to practice medicine while dodging bullets, so it's not surprising if they blow a call every now and then. PEM may be one of those problems lost in the chaos.

 

[Dufresne]

What test did you guys use for babaesia/bartonella?

I tested positive for babesia by FISH at Igenex, and this very strongly correlates to the treatments that have helped me.

I was negative for bartonella by Indirect Immunofluorescence Assay (IFA), and I've no solid reason to suspect I'm infected with the pathogen. However I'd like to know the reliability of this test, particularly when there's a healthy enough immune response to borrelia (judging by my CDC positive results). I've read that when IgG and IgM are taken together there's 90% sensitivity. Anybody know if this is true?

 

[nofuture]

Just to save people who are undergoing treatment much grief and delay i want to say that Lyme can come back even after agressive treatment be careful.

 

[Art Vandelay]

That's great to hear, I'm really happy for you. Man there are so many protocols; Marshall, Cowden, Buhner, Klinghardt...

How do you guys chose which one to follow?

I got on to the Marshall Protocol by chance as I had just came across a new doctor at the time who was recommending it. Prior to this, I had just tried high dose antibiotics and they provoked unmanageable Herxes so the MP appealed to me due to the lower doses of antibiotics. I didn't realise that I had Lyme at this point but had experienced many strange reactions to antibiotics so I theorised that I had some kind of chronic bacterial infection.

I hope you find something that works for you.

 

[Art Vandelay]

I'm interested in Marshall's proposed mechanism of immune suppression. I've tested low vitamin D 25 and high D 1,25. There's no question I'm positive for borrelia, but bacteriostatic ABX don't produce a herx for me, while bactericidal ABX do. This could indicate that my immune system is seriously compromised, and perhaps due to the reason Marshall suggests.

The reason I haven't experimented on myself to confirm the theory to my satisfaction is because of the blood pressure lowering effects of olmesartan, as low BP is a significant complication for me.

If I might ask:
How quickly after you started on Benicar did you notice a herx?
Did you have to lower your vitamin D 25 through diet and strict avoidance of sunlight before you experienced a herx?
Did you have any circulatory problems prior to starting the protocol?

Thanks, and good luck on your continued success.

Hi @Dufresne Marshall's hypothesis appeals to me because it seems to tally with my experiences with ME/CFS over the years. I'm not sure he's right about everything and I think his protocol only applies to a sub-group of people with CFS, but it has largely worked as advertised for me (although my recovery is taking quite a long time).

I didn't start on benicar initially because it wasn't available in Australia at the time. Instead, I was put on candesartan which is less effective at provoking herxes and protecting your body from inflammation than benicar in my experience (I'd also argue that the dose of candesartan I was prescribed was way too low to be protective). I started having crazy herxes after about two weeks with what I'd describe as extreme sensitivity to light being the worst symptom.

My 25 vit D levels were already very low when I started the MP (whereas my 1,25 D levels were extremely high), so I didn't have to make any changes to diet or sunlight exposure initially. That being said, I had to really limit my exposure to vit D once I started Herxing. In spite of continuing to avoid sources of vit D, my 25 D has slowly increased on its own over the last few years.

I haven't had too many problems with low blood pressure while on benicar. I already had probable POTS, so I was used to standing up slowly! My blood pressure has always jumped around a lot and was probably a little too high prior to starting on the MP.

My experience is similar to the FDA data which shows that benicar doesn't have much of an affect on blood pressure for dosages higher than 40mg:
http://mpkb.org/home/mp#measures_of_blood_pressure

That being said, I have spoken to some people on the MP who have issues with very low blood pressure. There is a small but helpful Facebook group who might be able to help you particularly on the blood pressure issue more than I can if you are interested. They are mainly Lyme patients in North America: https://www.facebook.com/groups/themarshallprotocol234/

Something to bear in mind is that many people find that taking Benicar/Olmesartan will restart their immune system and, once started, it might not stop. That is, they continue to Herx and remain sensitive to vit D even after they stop taking benicar, so starting the MP can be a big commitment.

I hope this is helpful!

 

[Aerose91]

I got on to the Marshall Protocol by chance as I had just came across a new doctor at the time who was recommending it. Prior to this, I had just tried high dose antibiotics and they provoked unmanageable Herxes so the MP appealed to me due to the lower doses of antibiotics. I didn't realise that I had Lyme at this point but had experienced many strange reactions to antibiotics so I theorised that I had some kind of chronic bacterial infection.

I hope you find something that works for you.

That actually sounds like where im at now- my doctor is considering putting me on doxycycline for a bit and see if I react. If so, we'll move forward with Lyme treatment.

If I may ask, where does the sensitivity to vitamin d come from? That sounds pretty brutal

 

[Art Vandelay]

That actually sounds like where im at now- my doctor is considering putting me on doxycycline for a bit and see if I react. If so, we'll move forward with Lyme treatment.

If I may ask, where does the sensitivity to vitamin d come from? That sounds pretty brutal

When referring to my sensitivity, I probably have used the wrong term: ie, I call it "sensitivity to vit D" whereas the MP people call it "photosensitivity". That being said, I also react quite strongly to food that contains vit D for example.

In short, they don't really know what causes the photosensitivity but speculate it's part of the inflammatory disease process: http://mpkb.org/home/lifestyle/light/photosensitivity My photosensitivity was so bad that I could barely leave the house during the day and going out at night was tough too since the light from streetlights and cars was blinding. I also had to use sunglasses to watch TV for years.

By contrast, other people on the MP have had few problems with this: one guy was still able to work in daylight hours in a brightly-lit office for example, whereas I couldn't tolerate fluorescent lighting at all.

It sounds like your doctor is following the tried and tested approach with using doxy to see if it triggers something. I really hope you get some sort of answers from it.

 

[yabeeb]

Hi guys

I shared my KDM results with a contact I have who is a Consultant Microbiologist and Infection Specialist in UK. He said he disagrees with a lyme diagnosis based on the lymphocyte ELISPOT test because it produces a huge number of false positives. He's confused me....

Any thoughts??

 

[Helen]

Hi guys

I shared my KDM results with a contact I have who is a Consultant Microbiologist and Infection Specialist in UK. He said he disagrees with a lyme diagnosis based on the lymphocyte ELISPOT test because it produces a huge number of false positives. He's confused me....

Any thoughts??

Hi, KDM´s diagnoses are based on all test results. I read your results in the KDM group and noticed that they were pretty much the same as mine. KDM´s explanations, during my last appointment, made sense to me.

 

[yabeeb]

Thanks Helen. I will entrust my life to him then!!

 

[Valentijn]

I shared my KDM results with a contact I have who is a Consultant Microbiologist and Infection Specialist in UK. He said he disagrees with a lyme diagnosis based on the lymphocyte ELISPOT test because it produces a huge number of false positives. He's confused me....

I think your friend is confusing the Elispot-LTT with the MELISA-LTT. The MELISA does indeed have a high rate of false positives. But the Elispot has a very low rate of false positives, about the same as the Western Blot and Elisa recommended by the CDC.

 

[yabeeb]

I think your friend is confusing the Elispot-LTT with the MELISA-LTT. The MELISA does indeed have a high rate of false positives. But the Elispot has a very low rate of false positives, about the same as the Western Blot and Elisa recommended by the CDC.

Hey @Valentijn. That's reassuring.

Yes he might well be getting them mixed up - i hope so! He also said the diagnosis of Tularemia was 'interesting' but suggested he has only ever seem a couple of people with it and that they were extremely ill with high temperature.

 

[Dufresne]

When referring to my sensitivity, I probably have used the wrong term: ie, I call it "sensitivity to vit D" whereas the MP people call it "photosensitivity". That being said, I also react quite strongly to food that contains vit D for example.

In short, they don't really know what causes the photosensitivity but speculate it's part of the inflammatory disease process: http://mpkb.org/home/lifestyle/light/photosensitivity My photosensitivity was so bad that I could barely leave the house during the day and going out at night was tough too since the light from streetlights and cars was blinding. I also had to use sunglasses to watch TV for years.

By contrast, other people on the MP have had few problems with this: one guy was still able to work in daylight hours in a brightly-lit office for example, whereas I couldn't tolerate fluorescent lighting at all.

It sounds like your doctor is following the tried and tested approach with using doxy to see if it triggers something. I really hope you get some sort of answers from it.

It's interesting photosensitivity is not a common side effect of Olmesartan, yet the majority of those on the MP suffer it quite badly. This suggests to me that either the increased dose of the drug used on the MP is responsible for the photosensitivity, or there really is something else going on in these patients, and perhaps it's what Trevor Marshall suggests.

@Art Vandelay, have you ever tried just 20 or 40 mg of Olmesartan per day to see if the photosensitivity occurs? Do you notice a correlation of photosensitivity with doses of antibiotics, suggesting die-off is to blame?

The MP appeals to me for a number of reasons. I had photosensitivity all my life up until a few years ago (fluorescent lights were the worst. A close second would be a brightly lit overcast sky). I'm positive for borrelia at Igenix by CDC standards. I have high 1,25 and low-normal 25. I also have elevated ACE, as well as ankylosing spondylitis; so, yeah, all the prerequisites.

Photosensitivity had caused me severe brain fog since childhood. This faded, for the most part, a few years ago but was replaced by a horrible tendency to sensitize to everything I put in my body, as well as a worsening of most symptoms. I wonder if my immunity hasn't shifted from cellular to humoral in a big way. I can't herx on doxycycline anymore, regardless of the dose. I get herxes a day after eating sugar, and what I think is happening here is borrelia coming out of the cells to enjoy the more favourable, sugary environment. Then my humeral system, which seems to work just fine, kicks their asses. But the intacellulars remain untouchable and continue to mess up my immune system. As KDM says, the bacterial infections in ME/CFS are all intracellular.

I plan to try some Olmesartan to see how I respond. It would be great if this alone, even in small doses led to some herxing, and even better if I noticed a change in sensitivities and other symptoms. As nice as the relief from a lifetime of photosensitivity and heavy brain fog has been, I think I'd go back that way if it meant getting to the root of my disease.

 

[Art Vandelay]

It's interesting photosensitivity is not a common side effect of Olmesartan, yet the majority of those on the MP suffer it quite badly. This suggests to me that either the increased dose of the drug used on the MP is responsible for the photosensitivity, or there really is something else going on in these patients, and perhaps it's what Trevor Marshall suggests.

@Art Vandelay, have you ever tried just 20 or 40 mg of Olmesartan per day to see if the photosensitivity occurs? Do you notice a correlation of photosensitivity with doses of antibiotics, suggesting die-off is to blame?

The MP appeals to me for a number of reasons. I had photosensitivity all my life up until a few years ago (fluorescent lights were the worst. A close second would be a brightly lit overcast sky). I'm positive for borrelia at Igenix by CDC standards. I have high 1,25 and low-normal 25. I also have elevated ACE, as well as ankylosing spondylitis; so, yeah, all the prerequisites.

Photosensitivity had caused me severe brain fog since childhood. This faded, for the most part, a few years ago but was replaced by a horrible tendency to sensitize to everything I put in my body, as well as a worsening of most symptoms. I wonder if my immunity hasn't shifted from cellular to humoral in a big way. I can't herx on doxycycline anymore, regardless of the dose. I get herxes a day after eating sugar, and what I think is happening here is borrelia coming out of the cells to enjoy the more favourable, sugary environment. Then my humeral system, which seems to work just fine, kicks their asses. But the intacellulars remain untouchable and continue to mess up my immune system. As KDM says, the bacterial infections in ME/CFS are all intracellular.

I plan to try some Olmesartan to see how I respond. It would be great if this alone, even in small doses led to some herxing, and even better if I noticed a change in sensitivities and other symptoms. As nice as the relief from a lifetime of photosensitivity and heavy brain fog has been, I think I'd go back that way if it meant getting to the root of my disease.

Hi @Dufresne to answer your questions, I definitely get an increase in photosensitivity after taking antibiotics. I find that an increase in photosensitivity is actually a good predictor for when I'm about to experience a Herx (eg, I'll suddenly notice that the TV seems a lot brighter).

The lowest dose of Olmesartan I've tried was 40mg twice a day and I was still extremely photosensitive at that dose. The minimum dose they now recommend is 40mg four times per day as this provides you with good protection from Herxing (I've definitely noticed that I feel significantly better at this dose, with much lower brain fog, pain, fatigue etc). I'm not sure I would ever lower my dose beyond this until my bacterial load is significantly lower. That said, Olmesartan can be a double-edged sword: I find that it provokes Herxing which will worsen my symptoms, but it can also act in a palliative manner and relieve them too.

The MP now relies on antibiotics much less since most people find they will Herx tolerably on this dose of Olmesartan. I still use pulsed minomycin now and then to provoke a reaction when I'm not Herxing but I find that it can be immuno-suppressive if I use it for too long.

Like you, I also get Herxes after eating sugar (usually within 5-6 hours) and my theory as to why this occurs is the same as yours!

If you're going to experiment with Olmesartan, I'd definitely recommend you talk to people on the MP forums as they no doubt have heard a lot of your questions many times before. They can also give you some advice if you experience any odd reactions: http://marshallprotocol.com/
This (closed) Facebook group is pretty helpful too (it's mainly people with Lyme from North America) - https://www.facebook.com/groups/themarshallprotocol234/

I hope you get some answers and some relief from your symptoms!

 

[msf]

Hi Yabeeb,

I am also a patient of KDM, and I have also had problems convincing NHS ID doctors that his diagnosis is correct. The thing I slowly realized was that the ID docs I saw had absolutely no knowledge of Yersinia whatsoever, when I realized this it was an easy choice. Lyme is a controversial area, but if that ID doc is suggesting that the NHS tests are definitive when it comes to Lyme then I think you can safely discount his opinion.