Lyme experts? question please

[madteaparty]

Pls don’t quote...I’m pretty sure my father picked up lyme here and is suffering all the classic symptoms now 4 weeks later. Rash, fever, achieness. I’m wondering if the  Burrascano guide is still the standard. He lives in a country that doesn’t have lyme but he is a doctor himself. I recall DH being on 3 different medications per our Lyme expert here in the Us, but I can’t recall them all now and all I find is doxy for 28 days...personally, I’m more concerned about other tick borne diseases in case he didn’t take it here but where he lives

Edited June 24, 2019 by madteaparty

[Carrie12345]

I can’t speak from expert/complicated status, but I can tell you that abx (not doxy, due to being young children) was effective for two of my kids.  One medicated within hours of being bitten, and the other months later with severe symptoms.  (They were testing him for leukemia at the same time as Lyme because of how he presented.)

I’m not suggesting looking no further than that, but wanted to share a simple success story in case other resources might be difficult for him to access where he is.

[BlsdMama]

I'd seek an LLMD - you should be able to seek one out on some of the Lyme forums.  I couldn't tell you for certain which he should take or if doxy is enough.  I was on three IV meds - azithromycin, daptomyacin, and ceftriaxone all at once.  I'm not sure I'd do it again...  There was a real risk of c diff.

If he's only had it for a month and no neuro symptoms, 45-60 days of doxy might be sufficient?  I'd do the essential oil protocol at the same time, if it were me, but if he's a traditional doctor, he probably won't consider it.  

Carrie - keep an eye out for any symptoms of Lyme re occurrence.  Antibiotics at a later date tend to send the little monsters into a cystic state... Essentially they "hibernate" until they're ready to attack again.  I hope and pray both of your kiddos' lyme cases are cured and the spirochetes are dead, dead, dead.  But be wary, just in case. 

[mumto2]

I am sure you have looked at the latest Lyme maps but have to say it’s spreading rapidly to places it’s never been before.  Just saying this because it might not be from your home......  A good friend’s dog contracted it four years ago and had never been walked in a known Lyme area in the UK.  It’s confirmed in our area now and I am a bit nervous about it.  My family has been warned and are wearing trousers for hiking etc. My laundry volume has increased.  😉

 Not sure how quickly health care will react to the unfamiliar......and I don’t want to learn the hard way.  Other than brambles and nettles we have never really had to worry about being careful of the outdoors.  No poison ivy,  bugs, or snakes to be really vigilant about......I grew up partly in Florida where creepy crawlies were part of life.  Totally spoiled..... 

[Pen]

On 6/24/2019 at 5:29 AM, BlsdMama said:

I'd seek an LLMD - you should be able to seek one out on some of the Lyme forums.  I couldn't tell you for certain which he should take or if doxy is enough.  I was on three IV meds - azithromycin, daptomyacin, and ceftriaxone all at once.  I'm not sure I'd do it again...  There was a real risk of c diff.

If he's only had it for a month and no neuro symptoms, 45-60 days of doxy might be sufficient?  I'd do the essential oil protocol at the same time, if it were me, but if he's a traditional doctor, he probably won't consider it.  

Carrie - keep an eye out for any symptoms of Lyme re occurrence.  Antibiotics at a later date tend to send the little monsters into a cystic state... Essentially they "hibernate" until they're ready to attack again.  I hope and pray both of your kiddos' lyme cases are cured and the spirochetes are dead, dead, dead.  But be wary, just in case. 

 

Yes ITA.  And if he cannot find a LLMD and is a doctor, maybe he could become one himself.  There are too few.

I don’t know what’s sufficient.  I know people who think they had sufficient, but where it’s not clear if they were cured or in a “remission” of sorts—not sure of a right word. 

In addition to hibernating there seems to be a connection between Lyme and related tick borne illness and Auto Immune disease 

I’ve been reading a bunch of books on Lyme in addition to returning to my standby favorite Lyme related book by Buhner.  And my second fav Horowitz Lyme related book.   The first has more on herbs, the latter relatively more conventional 

@BlsdMama have you read:

Cure Unknown: Inside the Lyme Epidemic by Pamela Weintraub (2013-06-25) https://www.amazon.com/dp/B01FGJ6RGU/ref=cm_sw_r_cp_api_i_v.afDbF046HX3

 I have not read the above one yet, but interesting reviewer comment in re AI illnesses including ALS about 2 down

Just started this one below:

Bitten: The Secret History of Lyme Disease and Biological Weapons https://www.amazon.com/dp/B07DTCDQNX/ref=cm_sw_r_cp_api_i_-obfDb6GTZ4KR

[BlsdMama]

11 hours ago, Pen said:

 

Yes ITA.  And if he cannot find a LLMD and is a doctor, maybe he could become one himself.  There are too few.

I don’t know what’s sufficient.  I know people who think they had sufficient, but where it’s not clear if they were cured or in a “remission” of sorts—not sure of a right word. 

In addition to hibernating there seems to be a connection between Lyme and related tick borne illness and Auto Immune disease 

I’ve been reading a bunch of books on Lyme in addition to returning to my standby favorite Lyme related book by Buhner.  And my second fav Horowitz Lyme related book.   The first has more on herbs, the latter relatively more conventional 

@BlsdMama have you read:

Cure Unknown: Inside the Lyme Epidemic by Pamela Weintraub (2013-06-25) https://www.amazon.com/dp/B01FGJ6RGU/ref=cm_sw_r_cp_api_i_v.afDbF046HX3

 I have not read the above one yet, but interesting reviewer comment in re AI illnesses including ALS about 2 down

Just started this one below:

Bitten: The Secret History of Lyme Disease and Biological Weapons https://www.amazon.com/dp/B07DTCDQNX/ref=cm_sw_r_cp_api_i_-obfDb6GTZ4KR

I haven't, but there are multiple people, presented like MS and then ended up with ALS.  They have several MS symptoms (sensation issues, tingling, etc., lesions) which are atypical of ALS, and then die of ALS.  (Keeping in mind that ALS has a few known causes - mutated gene, inherited gene, and then many unknowns of what can trigger the cascade of symptoms known as ALS/Motor Neuron Disease.) My tick bite by a deer tick was 2008.  I took inadequate antibiotics at the time.  We found Lyme in my spine, just not enough to be a positive (no kidding) and we've treated Lyme heavily since with no pull back on symptoms.  Mayo looked for Lyme extensively and found nothing.


The truth is that our understanding of Lyme is even more inadequate than how they first understood syphilis.  It's a very dangerous disease and it's spreading rapidly.  It's not a good thing for anyone right now. 😞

[Pen]

 

18 minutes ago, BlsdMama said:

We found Lyme in my spine, just not enough to be a positive (no kidding)

 

I need a jaw drop emoticon.   

 

[Pen]

33 minutes ago, BlsdMama said:

I haven't, but there are multiple people, presented like MS and then ended up with ALS.  They have several MS symptoms (sensation issues, tingling, etc., lesions) which are atypical of ALS, and then die of ALS.  (Keeping in mind that ALS has a few known causes - mutated gene, inherited gene, and then many unknowns of what can trigger the cascade of symptoms known as ALS/Motor Neuron Disease.) My tick bite by a deer tick was 2008.  I took inadequate antibiotics at the time.  We found Lyme in my spine, just not enough to be a positive (no kidding) and we've treated Lyme heavily since with no pull back on symptoms.  Mayo looked for Lyme extensively and found nothing.  

The truth is that our understanding of Lyme is even more inadequate than how they first understood syphilis.  It's a very dangerous disease and it's spreading rapidly.  It's not a good thing for anyone right now. 😞

 

ITA    I knew a family where 2 of the kid were dx with Lyme, followed shortly by the dad being dx with Parkinson’s .  I wondered if maybe the Parkinson’s could have been set off by a tick as well—though the Dad also had had a lot of chemical exposures that have been associated with Parkinson’s