Lyme disease

ruben

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I have a work colleague who was recently telling me she had visited the the Dashan clinic in Surrey. She went there as she had Lyme disease. Chinese medicine is what's on offer. She tells me it cured her. I have to say she came across she was giving an honest account of her experiences On hearing this I made an appointment. I have now been twice. As well as acupuncture and herbs I was told to avoid this and that food. Having gone back this week for appointment number two I told him I had had a lot of nausea which is a normal symptom for me anyway. He then suggested I cut out yet more types of food. I am finding this a bit overwhelming. Does anyone have any thoughts on this.
 

vision blue

What big eyes...
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Nothing wise to say. Am currently being evaluated for Lyme and bartonella so opened yourr thread

Why overwhelmed by their advice? Do you mean it’s a hardship to follow or that you think it’s making you sicker?

Is it worth asking your co worker if she had to deal with increased nausea?

Also you mentioned you have CFS- whats your evidence you have chronic lyme? Is it good evidence?

So hard to know because the treatment that cures one person makes another worse or has no effect. Sometimes if you can afford it both in terms of money and time and effect on your body there’s no way to really predict if you’ll be a responder or not

What does the web say about the clinic?
 
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As well as acupuncture and herbs I was told to avoid this and that food. Having gone back this week for appointment number two I told him I had had a lot of nausea which is a normal symptom for me anyway. He then suggested I cut out yet more types of food. I am finding this a bit overwhelming. Does anyone have any thoughts on this.
I do alot of chinese medicine.....my person is an herb expert. He emphasizes herbs.

Are you receiving custom raw herbs, a mix? just for your specific situation? (individual formula)...or are you being given small pills or powders? (formulas, what we would call "over the counter"...)

Are the herbs tested? the wholesaler/importer should be testing.

Are you considering an antiviral type protocol ??(I never did that specifically)

**

I personally am not cured, (I don't think I have Lyme, I'm more EBV). Its certainly possible. Acupuncture is not the typical route to proceed to correct these types of syndromes.

Adjustments in diet are typical, as food is viewed as both medicine and energetically in chinese medicine.

Generally, I'm treating blood stagnation, severe Yin deficiency (overheated/inflamed), various weaknesses in the Qi and "it ain't flowing"...is really what I call this entire problem. Energy is not flowing. CSF is not flowing. Lymph is not flowing. Body is desiccated.

I did a lot of diet changes, altho I am erratic at deployment. Mostly I eat warm oily smooth foods, and need considerable grounding in the food department. I eat very little raw food. Wind is a bit problem in my case.
 

Judee

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He then suggested I cut out yet more types of food.
I've cut out so many food groups through the years with this disease. Lots of us have had to. :(

It is overwhelming to do and I would say it makes it a little easier if you do just one food group at a time.

Then after you've taken it out for a while (7-10 days for instance) evaluate if something/anything has improved for you.

If not, trial that food group back in using small doses and see if you crash or get other symptoms like headaches, brain fog, depression or aggression, etc. (The list is long so just try to be very aware of what's going on with your body. Even something like lips and/or eyes drying out can be a indicator.)

If you don't seem to get any reaction at all, then I would say that food is probably (maybe/possibly) not a problem for you (at least for now) and then move to the next food group and do the same thing.

I've been trialing foods back in this last year or so since being on antibiotics and antibiotic herbs and I've found I can eat potatoes and natural ferment sauerkraut (even some types of mushrooms) again but dates, eggs, and soy all still crash me very badly and for several miserable days afterward. (I still stay away from cow's milk dairy, yeast, and gluten.)

Also be aware that eliminating these things probably won't "cure" the Lyme or ME/CFS but exposure to a problem food (or environmental trigger) can cause a lot of additional problems that make this disease even harder to deal with.

Unfortunately, it gets to feeling like one step forward; two steps back sometimes.

Hang in there and just do what you can handle. Also remember the ME/CFS moto "Start low and go slow" on anything you do try.
 
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this weeks episode of Bill Maher, on hBO: Politically Incorrect (YES A POLITICS DISCLAIMER WARNING)

August 12, 2022...Bill interviews journalist Ross Douthat...he got Lyme disease, and just wrote a new book.

its the main interview on the main episode, and its discussed again in the Overtime episode on You Tube.


This was a fascinating conversation, but also a missed opportunity as Mr. Douthat is now somehow cured, isn't interested in criticizing the established medicine. And just made light of something so serious.

In fact Bill Maher was arguing for US....people not being properly treated by western medicine.

Yay for Bill.
 
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Did anyone get Lyme many years ago?

Did anyone get Lyme growing up in New England?

It seems like NOW we have Lyme, but we did not have Lyme in the past.

I was bit by ticks hundreds of times. No Lyme.
 

hapl808

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This was a fascinating conversation, but also a missed opportunity as Mr. Douthat is now somehow cured, isn't interested in criticizing the established medicine. And just made light of something so serious.
I've read some of his story. He's one of the 'lucky' ones who got a 'diagnosis' and a 'treatment' and is now 'cured'.

I use quotes because we really have no idea if he had lyme - lyme can be a coinfection, is prone to misdiagnosis, etc. Maybe every single person on this forum has chronic lyme, or maybe we don't. We don't have properly validated tests with high enough sensitivity or even specificity to know. ID specialists rightfully criticize the chronic lyme community because they use unvalidated pseudoscience, but they have no other options because the ID community gaslights them and refers to psych.

And what if he had a different infection that responded to antibiotics? What if he's not cured and just in remission; many of us have had remission or near-remission with antibiotic treatment, followed by a later relapse. If you diagnosed lyme for any bacterial infection that would respond to those abx, then you could declare victory.

He's just indicative of a problem with the medical establishment AND the chronic illness community. Everyone believes that whatever worked for them is proof of their theory of why it worked. Oh you have depression, this drug fixes your serotonin, now you're better. Flash forward a few decades and maybe serotonin had nothing to do with it and we actually have no frickin' clue what we're doing or why some things work and some don't.
 
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we actually have no frickin' clue
great comments...totally agree..

This guy went to the alternative doctors after he was spit out of the System. He then more or less told tall tales on alternative medicine, later indicated six years of antibiotics and "the crazy stuff" cured him: yet he has relapses.

Bill was great. Gonna drive down to find him and give him a Big Hug.

(if anybody was going to get lyme, it should be me, career in the woods, covered in ticks.)
 

duncan

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ID specialists rightfully criticize the chronic lyme community because they use unvalidated pseudoscience, but they have no other options because the ID community gaslights them and refers to psych.
This observation strikes me as painting with a very broad brush. Who is "they" and what pseudoscience? What qualifies something as such? Moreover, validated by whom with what? And many infectious disease specialists - many - support late stage, and yes, chronic lyme diagnoses - including at one time or another several of the 2006 IDSA Lyme Guideline authors. Read Lyme studies throughout the 80's and you will see chronic Lyme referenced frequently. Seronegative Lyme as well.
 

hapl808

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This observation strikes me as painting with a very broad brush. Who is "they" and what pseudoscience? What qualifies something as such? Moreover, validated by whom with what? And many infectious disease specialists - many - support late stage, and yes, chronic lyme diagnoses - including at one time or another several of the 2006 IDSA Lyme Guideline authors. Read Lyme studies throughout the 80's and you will see chronic Lyme referenced frequently. Seronegative Lyme as well.
What qualifies something? Validated by whom? All good questions. I don't know the answers, but neither does Igenex or IDSA or whoever. These things are controversial for good reason. Controversy usually exists when there's not a clear answer. There is little controversy I'm aware of that x-rays are good for diagnosing broken bones. We understand the mechanism, we can 'validate' it in animal models, etc. There may be more controversy on hairline fractures that may not show up on imaging, etc. The less clearly we can understand and 'see' the problem, the more controversy because by definition we don't understand.

Depression is a great example. We have no way to measure neurotransmitter production in the brain under normal conditions, so we have no idea what's going on. It's based on theoretical or loose animal models.

So I'd ask again - validated by whom? What's the 'gold standard' for diagnosing lyme? What's the 'gold standard' for diagnosing when lyme has been eradicated? What's the 'gold standard' treatment? I wish I knew, having taken Buhner herbs, doxy, zithro, Zhang, etc.

There are many people studying this and possibly there will be breakthroughs, but we're not there yet. I've seen various lyme doctors and been treated. Initially I improved a lot, then I relapsed quickly, then I got treated more and plateau'ed. Later I had a CFS-style 'crash' that set me back. Is this all lyme related? Is none of it lyme related? I have no idea. And I'm skeptical of anyone who says they know for sure.

Disquieting and disheartening.
Fully agree. I have no question that there is SOMETHING going on, but again - I'm skeptical of anyone who says they know for sure. Is ME/CFS a form of lyme? Is it related to other viruses? Is it just autoimmune dysfunction? Is it an active infection? Is chronic lyme an active infection? What titers or PCR can approach 100% sensitivity or specificity (like we'd expect with a 4th Gen HIV test). There are thousands of threads here where we try to dissect just that. Is it a kidney infection? Is it a gut enterovirus? Is it an imbalance in the microbiome? Is it a neurotransmitter malfunction?

Sadly the establishment has just gaslighted and marginalized anyone presenting with these illnesses, so we really have no idea what's going on. They've barely bothered to study it.
 

hapl808

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I have a work colleague who was recently telling me she had visited the the Dashan clinic in Surrey. She went there as she had Lyme disease. Chinese medicine is what's on offer. She tells me it cured her. I have to say she came across she was giving an honest account of her experiences On hearing this I made an appointment. I have now been twice. As well as acupuncture and herbs I was told to avoid this and that food. Having gone back this week for appointment number two I told him I had had a lot of nausea which is a normal symptom for me anyway. He then suggested I cut out yet more types of food. I am finding this a bit overwhelming. Does anyone have any thoughts on this.
And just to refer back to OP.

I imagine her account was honest. The problem with chronic lyme or ME/CFS or other things, is many people will improve even if they do nothing. So it's hard to say what helped or didn't help. I think the longer the symptoms and the more severe, the less likelihood of spontaneous improvement - but not impossible.

I've done traditional medicine, acupuncture, TCM herbs, etc. It was extremely helpful when I was moderate, then did pretty much nothing when I become more severe. YMMV.
 

duncan

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@hapl808 , yes, all good points and questions. My take away has been the history of Lyme has in great measure been a history of too many people with too many vested interests telling too many fibs. The thorny part is distinguishing the good actors from the bad. To do that you need a divining rod - and some insight into various degrees and forms of incentives.