Just diagnosed with Lyme

[Matt_C]

Hi all,

Just a few days ago I found out I have Lyme disease. I'm an Australian who up until last year had never been out of the country. I grew up in South Australia and travelled to the ACT to see family semi-regularly, and to the South Coast of NSW. I spent two years in Darwin when I was 19/20, but my health issues were already starting to emerge by then.

I'm unsure where I could have been infected. I and my mother don't recall that I was ever bitten by a tick or any spiral rash. I've been bitten by lots of things though and used to react badly to mosquito bites. I had recurring bouts of ear infections in early childhood, and recurring bouts of bronchitis and tonsillitis in childhood. Insomnia began about age 17/18, then things got steadily worse until I was bed-ridden with what a doctor finally called chronic fatigue syndrome when I was 32 years old. I had many of the strange symptoms i've read in Lyme symptoms lists since my diagnosis.

I've created a few threads over the years on this site, starting when I starting the antiviral protocol and then when I started the methylation protocol. Prior to that I did the Marshall Protocol which back then was using the main drug Olmesartan taken every 4-6 hours combined with low-dose, pulsed antibiotics including minocycline and azythromycin. These two antibiotics helped me the most. Azythromycin helped alleviate the chronic and severe pressure in the nape of my neck and induced herx in the way of powerful penetrating migraines in that area. However, it didn't get around to the rest of my head and I still have this chronic tension type/pressure headache, like a band wrapped around my head. My temples and frontal brain area are the most noticeable. I only stopped the Marshall Protocol because the gains had slowed significantly, and I was started to get unbearable insomnia. Perhaps, though, that was the antibiotics working their way through the brain regions that are infected.

I've started Stephen Buhner's herbal protocol and have an appointment with a Lyme doctor in a few weeks. I'm open to antibiotics and perhaps resuming the olmesartan in combination with the herbs. Given my response in the past, i'm interested to see how I go with some doxycycline, something I never tried. It was only recommended as a second-line treatment at the time if a person didn't respond to mino.

It's been such a strange and long journey. To finally have a proper understanding of what i'm dealing with is huge. However it comes with some reservation that I may never fully recover, as some don't. I hear results are very positive with Buhner's methods though. Both he and a number of local herbalists and naturopaths i've seen have also attested to. And I did really well on a herbal protocol many years ago, but stopped as things stopped working and it was very expensive. I didn't realise the need for constantly monitoring and adjusting dosing to achieve remission. This time I do, so i'm hopeful things will get better.

Having said that, i'm doing quite badly lately. I'm not sure if it's herx or a reaction to some new herb. I have a tendency to throw everything at my body too quickly, so perhaps i'll back off and add one herb at a time, as is recommended.

I'll post my progress on this thread as I go along.

 

[Belbyr]

How were you diagnosed?

 

[Art Vandelay]

Hi @Matt_C I also grew up in SA and my doctor suspects that I have Lyme. So far, I have had a few inconclusive tests so I'm not convinced as yet.

I've been on the MP for many years now and have made steady improvement. Interestingly these days, there's less emphasis on antibiotics in the MP and more of a focus on Olmesartan. I haven't used antibiotics in well over a year now.

I'll be interested to hear how you get on.

 

[Matt_C]

How were you diagnosed?

Australian Biologics test for it and a number of co-infections. I also have mycoplasma. It's really expensive for all the tests though so I started with urine for borrelia (Lyme) which came back positive, and bloods for mycoplasma. I'm not going to get any more tests as we all agree given my clinical presentation that I have Lyme disease.

 

[Matt_C]

Hi @Matt_C I also grew up in SA and my doctor suspects that I have Lyme. So far, I have had a few inconclusive tests so I'm not convinced as yet.

I've been on the MP for many years now and have made steady improvement. Interestingly these days, there's less emphasis on antibiotics in the MP and more of a focus on Olmesartan. I haven't used antibiotics in well over a year now.

I'll be interested to hear how you get on.

I believe there's some sort of stealth pathogen at work in almost all chronic illnesses. Yes I'm aware the MP team no longer recommend antibiotics but the olmesartan alone does almost nothing for me any more. I started it again for a while recently and no difference, no obvious ip.

 

[CCC]

Hello @Matt_C , we've also started the Buhner herbs, about a couple of months ago.

It was Chris Armstrong's paper and some some strange stretch marks that led us to Bartonella and then the Buhner herbs. Thank you PR and Dr Google.

We finally saw a LLD in sydney last week, and he confirmed it. The improvement on the Buhner herbs had already convinced me anyway.

All the best.

 

[Belbyr]

Ok just wanted to check if you had used approved testing or if it was from an outside lab... One of my lyme doctors used an outside lab that said I was positive, even though I never had lyme... I did a lot of worthless antibiotic treatment.

 

[duncan]

One of my lyme doctors used an outside lab that said I was positive, even though I never had lyme...

I am curious how that worked, @Belbyr. Did you get to see your labs? What kind of testing was employed? How is it you became so confident you've never had a Borrelial infection?

 

[Art Vandelay]

I believe there's some sort of stealth pathogen at work in almost all chronic illnesses. Yes I'm aware the MP team no longer recommend antibiotics but the olmesartan alone does almost nothing for me any more. I started it again for a while recently and no difference, no obvious ip.

I agree with you on the role of pathogens in many illnesses (particularly this one). That's a shame that you're not getting any noticeable IP from Olmesartan alone. From what I can see, there are quite a few people in the same boat who are using antibiotics to push things along. Oddly, I found that antibiotics were perhaps having a modulatory effect on my immune system because I got more IP when I stopped them.

Re Lyme testing, I had an 'equivocal positive' ELISA and positive IgM western blot with Igenex. However my IgG western blot was negative with only 41K. I also had positive IgM and negative IgG western blot on a government-approved test offered by ARRL in Geelong.

According to an academic at Sydney Uni either I'm immunosuppressed or I have relapsing fever Borrelia so I'm considering further testing options. Then, I'm not in any hurry because a positive test probably won't have any implications for my choice of treatment while I'm still getting IP.

 

[Matt_C]

Part of my dismay with the mp is that many of the same people are still there, seemingly as unwell as they were when I left the forums several years ago. Perhaps I needed the higher doses of antibiotics and different kinds, especially doxy, but they withdrew their support for people still using antibiotics so I didn't know what to do. Now they're obsessed with emf frequencies and wrapping everything and everyone in aluminium foil. Anyway I'm seeing an LLD soon who also uses the mp so perhaps she has some sensible ideas about how to proceed.

I'm intrigued by the idea of combining olmesartan with the herbs then pulsing some antibiotics but this idea is probably not supported by anyone. Hopefully my LLD has some experience with this.

 

[Art Vandelay]

Part of my dismay with the mp is that many of the same people are still there, seemingly as unwell as they were when I left the forums several years ago. Perhaps I needed the higher doses of antibiotics and different kinds, especially doxy, but they withdrew their support for people still using antibiotics so I didn't know what to do. Now they're obsessed with emf frequencies and wrapping everything and everyone in aluminium foil. Anyway I'm seeing an LLD soon who also uses the mp so perhaps she has some sensible ideas about how to proceed.

I'm intrigued by the idea of combining olmesartan with the herbs then pulsing some antibiotics but this idea is probably not supported by anyone. Hopefully my LLD has some experience with this.

Definitely agree with you about the MP forums. I don't post there very often these days.

I'll be interested to hear what your new LLD recommends. A previous GP had me use lactoferrin in combination with antibiotics and I certainly got a big Herx from that. While my progress is very slow, I get a huge relief from most of my symptoms from Olmesartan so I'm reluctant to give that up in the absence of anything better coming along.

 

[Rossy191276]

Hi Matt...hopefully you are now on the right track. I am from Brisbane and was likely infected with lyme when working in Virginia in 2015. I tested positive with Australian Biologics and Armin labs. Unfortunately, after several months of combined antibiotic and Buhner herb protocol I came to the conclusion that they weren't helping at all and stopped them about 4 months ago. Given that I have not become worse since stopping and my symptom intensity seems to be based almost exclusively on physical and to a much lesser extent mental exertion I believe its most likely for me that although the Lyme infection likely played a role in triggering my issues that I have me/cfs or post lyme rather than active lyme... This is worth considering as you move along your treatment as while it is a no brainer that if lyme infection is causing your issues then lyme treatment will be appropriate my own journey has led me to current perspective that it's also possible that many people with me/cfs are getting treated with antibiotics by lyme literate doctors that won't help because they have me/cfs.. I have been considering for a while trying LDI treatment based on the ideas of Dr Vincent but haven't heard as much about its helpfulness of late so I am currently holding off in hope that the current me/cfs research brings treatment options soon.. good luck!

 

[Mel9]

Hi Matt...hopefully you are now on the right track. I am from Brisbane and was likely infected with lyme when working in Virginia in 2015. I tested positive with Australian Biologics and Armin labs. Unfortunately, after several months of combined antibiotic and Buhner herb protocol I came to the conclusion that they weren't helping at all and stopped them about 4 months ago. Given that I have not become worse since stopping and my symptom intensity seems to be based almost exclusively on physical and to a much lesser extent mental exertion I believe its most likely for me that although the Lyme infection likely played a role in triggering my issues that I have me/cfs or post lyme rather than active lyme... This is worth considering as you move along your treatment as while it is a no brainer that if lyme infection is causing your issues then lyme treatment will be appropriate my own journey has led me to current perspective that it's also possible that many people with me/cfs are getting treated with antibiotics by lyme literate doctors that won't help because they have me/cfs.. I have been considering for a while trying LDI treatment based on the ideas of Dr Vincent but haven't heard as much about its helpfulness of late so I am currently holding off in hope that the current me/cfs research brings treatment options soon.. good luck!

Depends on which antibiotics you were prescribed? Some combinations are better than others and pulsing and breakdown of biofilms should also be considered. All working for me, although a slow process.

 

[Matt_C]

and different combinations work for different people. I plan to experiment for a full year or more finding the right combo and doses. In fact I'm going to do whatever it takes to get my health back.

Ridiculously expensive though. Prohibitive for most.

 

[Dufresne]

Hi all,
I had recurring bouts of ear infections in early childhood, and recurring bouts of bronchitis and tonsillitis in childhood. Insomnia began about age 17/18, then things got steadily worse until I was bed-ridden with what a doctor finally called chronic fatigue syndrome when I was 32 years old. I had many of the strange symptoms i've read in Lyme symptoms lists since my diagnosis.

I also suffered ear infections in early childhood and recurrent strep throat until the age of sixteen. They eventually took my tonsils out which solved that problem. The ENT told me the bacteria was lingering in my tonsils and that's why I was repeatedly getting sick. Apparently my immune system and ABX didn't work very well for that infection either.

I was diagnosed with ME/CFS at 31. My problems seem to largely be due to Lyme and co. They're tenacious infections but I'm making progress. It takes time.

 

[Matt_C]

Hi Matt...hopefully you are now on the right track. I am from Brisbane and was likely infected with lyme when working in Virginia in 2015. I tested positive with Australian Biologics and Armin labs. Unfortunately, after several months of combined antibiotic and Buhner herb protocol I came to the conclusion that they weren't helping at all and stopped them about 4 months ago. Given that I have not become worse since stopping and my symptom intensity seems to be based almost exclusively on physical and to a much lesser extent mental exertion I believe its most likely for me that although the Lyme infection likely played a role in triggering my issues that I have me/cfs or post lyme rather than active lyme... This is worth considering as you move along your treatment as while it is a no brainer that if lyme infection is causing your issues then lyme treatment will be appropriate my own journey has led me to current perspective that it's also possible that many people with me/cfs are getting treated with antibiotics by lyme literate doctors that won't help because they have me/cfs.. I have been considering for a while trying LDI treatment based on the ideas of Dr Vincent but haven't heard as much about its helpfulness of late so I am currently holding off in hope that the current me/cfs research brings treatment options soon.. good luck!

Hi Rossy. Sorry to hear your approach didn't work out for you. But everything i've been learning tells me that when people don't get better, it's because there's a co-infection they're missing and not treating. Have a look at this video, from Dr Richar Horowitz, a Lyme expert in the US:

Might be worth buying his book and going back to your doc and trying to figure out a new treatment plan.

Cheers,

Matt

 

[CCC]

Hi @Rossy191276 it's a long road.

I second the possibility of a coinfection. There are a few Buhner herbs that are common to most of them. It's worth buying his coinfection book. It's failry cheap on kindle.

Do you have a good doctor in Brisbane?

 

[Rossy191276]

Thanks for the advice guys... I tested negative to co-infections and symptoms don't indicate most common ones though I realise testing is not reliable with co-infections... I see Dr John Whiting in Brisbane who is an ME specialist but also open to Lyme and advised me to get testing done... I've read Horowitz's books and had extensive testing done... As I said I would love it to be treatable Lyme but I think more likely based on symptoms I have ME that was possibly triggered at least in part by lyme...

 

[CCC]

Thanks for the advice guys... I tested negative to co-infections and symptoms don't indicate most common ones though I realise testing is not reliable with co-infections... I see Dr John Whiting in Brisbane who is an ME specialist but also open to Lyme and advised me to get testing done... I've read Horowitz's books and had extensive testing done... As I said I would love it to be treatable Lyme but I think more likely based on symptoms I have ME that was possibly triggered at least in part by lyme...

We also tested negative to everything, but had the distinctive Bartonella rash (looks like stretch marks). So we self-treated with Buhner herbs for several months until we could find a doctor.

I also now have a good library of books by Buhner and Hororwitz

 

[dr. Arf]

Definitely agree with you about the MP forums. I don't post there very often these days.

I'll be interested to hear what your new LLD recommends. A previous GP had me use lactoferrin in combination with antibiotics and I certainly got a big Herx from that. While my progress is very slow, I get a huge relief from most of my symptoms from Olmesartan so I'm reluctant to give that up in the absence of anything better coming along.

@@Art Vandelay
Writing you Because of the following.

I was on the Coimbra protocol for 5 weeks, for ME/CFS, As it has helped some people with this condition.
Meaning taking about 400,000 units of vitamin D !
But Unfortunately I reacted very strongly on the protocol, making me bedbound Now in A very short time.

Now my Regular specialist Professor de Mierleir Says that a subset of his patients reacted very badly to vitamin D.

So he suggested to take Olmesartan To improve my situation.

So I'm ordering these drugs now And I was wondering if you could give me some piece of advice...
As I've seen you have been taking for a long while.

Are you also intolerant to Vitamin D supplements?