Lyme Disease Science Conversations:
Facebook Conversations

Conversations on Facebook with a leading Lyme disease expert, Dr. Daniel Cameron, about the latest discoveries and advancements in Lyme disease and associated illnesses.

Could transparency engender greater trust for Lyme disease patients?

How about transparency?

“Transparency — especially when things go wrong — is increasingly considered necessary to improving the quality of health care. By being candid with both patients and clinicians, health care organizations can promote their leaders' accountability for safer systems, better engage clinicians in improvement efforts, and engender greater patient trust.” writes Dr. Kachalia from Brigham and Women's Hospital and Harvard Medical School in a NEJM article on patient safety.1

Things have gone wrong in Lyme disease. Could transparency engage clinicians in improvement efforts and engender greater trust for Lyme disease patients?

Has your care provider been transparent? Please join the conversation in the comments below.

1. Kachalia A. Improving patient safety through transparency. N Engl J Med. 2013;369(18):1677-1679.

This is one of a series of short videos to explore topics I have seen in my practice. Dr. Daniel Cameron #LymeConversations
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I have diagnosed ptsd from doctors lying to me and manipulating information to suit their ignorant beliefs. Transparency would go a long way to helping this.

YES. It would go a long way towards allowing those (seemingly few) doctors who don't like the Lyme Lies, too. That would help a lot too. But the ones who use it as an excuse to be hateful to patients- it would go a looong way towards SHUTTING THEM UP, too! Had doctors be 'really' hateful about it.

A tsunami of symptoms of Lyme disease.

Some of my patients have experienced a sudden severe wave of symptoms. It is like a tsunami of symptoms of Lyme disease.

Antibiotics can precipitate the wave of symptoms. This wave has been called a Jarisch–Herxheimer reaction.

Stress, alcohol, and processed sugar can precipitate the wave.

In many cases, the wave occurs without any trigger.

A tsunami of symptoms of Lyme disease can be frustrating to the patient, family and friends.

Have you ever seen a tsunami of symptoms of Lyme disease? Join the conversations in the comments below.

This is one of a series of short videos to explore topics I have seen in my practice. Dr. Daniel Cameron #LymeConversations
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Yes I’m going through it right now . And when it happens I get irregular heartbeat. Fatigue, muscles pain, joint pain, brain zaps , neck pain, nausea, memory loss , anxiety and depression...

Yep, all those things mentioned! Getting too tired, weather or considerable temperature changes, dehydration, not getting enough rest, poor nutrition or not eating enough, and loads of micro factors that add up and cause big issues!

I follow a ketogenic diet and if I cheat on it at all, all my Lyme symptoms flood my life. Memory problems, anxiety, depression, suicidal thoughts, panic attacks, irregular heartbeat, I get super out of breath, tons of aches and pains- especially in my joints, brain fog, blurred vision.. there’s probably more, but these are all I can think of off the top of my head. I’m going through it right now. I’ve noticed that getting extremely cold has a similar effect on me. Can extreme cold cause a die off?

Very interesting! I never considered those as factors to herxing. I take (and rotate through) so many herbs and supplements I always assumed that was the issue. I don't do sugar or alcohol but stress is hard to avoid. I'd like to add exercise to that list as well because over doing it would precipitate worse symptoms back when I "just" had Lyme and co-infections. After 3 years I finally got tested for viruses and that is an issue as well as the fatigue from PEM/POTS/CF. At his point I have no idea what causes any particular symptom from one day to the next. I'm just grateful I'm about 50% functional (slowly) for 4-6hrs a day about 5 days a week. It has been and could be a lot worse.

Yes, going through it now. Sometimes I think uh oh, the antibiotics are not working and then a day or two later I am feeling almost normal and the bad days are fewer, so I'm not giving up, because this is far better than what it felt like before. Life is worth living again.

Yes. Deteriorates further every time I need surgery or dental work.

ACDF surgery two weeks ago, and its it's been rough. Really rough (antibiotic). And I had just recovered from meningitis and 3 more teeth having been extracted, and that preceded by two foot surgeries bc the bones in digits 2 & 4 magically 'disintegrated.' I see my cardiologist today, but how do I tell him that internal parasites love incision sites, that i I fear blockage of nearby veins and arteries at/near throat/neck area? I mentioned Lyme Carditis twice, but to no avail despite having gained a second prolapse in another heart valve. I bought cloves, wormwood, arginine, and ornithine, and I'm afraid to start that regimen Bc I have no idea what the outcome will be just as I don't know the outcome of not trying again to kill the internal parasites--the blood-brain barrier was breached a while back. Two Lyme-literate doctors practice in Phoenix but at $200 an hour, so they're not an option. I find it remarkable that it rains Opioids in our country, but to get a script for Metronidazole, etc., simply is Impossible......

Dr. Cameron, what do we do about the irregular heartbeat?

Yes, that was me...it was horrible

Yes. I know it quickly with to much sugar which I tend to have more of when stressed.

My six year old went through this last year in the hospital while on IV antibiotics. The ID docs insisted on changing his medication 3 times thinking he was allergic to them. I questioned if it could be a herx after doing my own research and they all insisted that it was definitely not and that it was incredibly rare and usually in patients with more severe illnesses (my son was in for Lyme related Meningitis!). Why is there such denial?

Yes for 2 years non-stop, thought I was gonna die several times. Joint pain everywhere except my shoulders, inflammation in kidneys, heart, brain and spinal cord, with neurodegeneration like Parkinson’s, ALS, MS and brain fog, problems with walking, difficulty balance coordination, difficulty to keep a straight pasture, difficulty with fine motor skills, extremely tired like I’m terminal. And no doctor who wants me to give the right treatment: pulse therapy with Ceftriaxon and combining antibiotics and with Plaquenil and anti-viral medication.

Yes, all the time

How many have had an illness go from a flu to complete spinal pain to kidney stones to gut issues and back around or similar?

This is the story of my life for 40 years. In and out of natural remissions...now i pray the newest of symptoms will also come and go.If they stay around forever then I will soon be an invalid.

I think my worst complaint was the severe headache. I was taken doxycycline hyclate 100 mg as treatment for Lyme disease, twice a day for 21 days. and didn’t seem to be improving. I did not display a rash or any kind of bull's eye. Diagnosis was from blood test. We tried every shots available but nothing worked. My Lyme Disease got significantly worse and unbearable because of her cognitive thinking. In 2015, our physician advised we go with natural treatment and was introduced to Organic Herbal Clinic natural organic Lyme Disease Herbal formula, I had a total decline of symptoms with this treatment, the fever, joint pain, weakness, shortness of breath, and anxiety. and others has subsided. Visit Organic Herbal Clinic official website ww w. organicherbalclinic. com

No specifics on the symptoms???

I’ve had all of the symptoms for years. Did the abx for almost 2 years, about killed me. Then changed my diet, started eating a lit healthier. Eventually I also discovered Nrf2 activation. This is the key. The body can heal itself with proper nutrients. Nutrigenomics. Lots of doctors are making lots of claims to heal Lyme, most people are capable of healing themselves. Addressing mitochondrial disfunction and Nrf2 activation is helping lots of people with out expensive protocols.

Indeed

Yes it is terrible

Yes. ..as the little buggers die off from antibiotics and other treatments (stevia and structured silver ) Myriads is the way to describe all the symptoms! !👽💚👄

Yes..... .

Im not to good at the moment. Feeling a lot of pain and muscle stiffness and fast heartbeat .

yes I think it is at times activated more than other times, there is a cause but hard to identify what exactly brings it on...

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2 weeks ago

Dr. Daniel Cameron

Feet pain, plantar fasciitis, and Lyme disease.

I have often seen feet pain in my Lyme disease patients.

Some patients have described painful feet even when walking from the bed to the bathroom.

Miller and colleagues described feet pain Retrospective Case Series in the Journal of Foot and Ankle Surgery in 2016.1

I refer patients to a podiatrist if the pain does not resolve with antibiotics.

In the past, podiatrist would often diagnose the pain as a heel spur.

More recently, podiatrists have diagnosed the pain as plantar fasciitis.

I find that foot pain often resolves with antibiotics for Lyme disease.

Have you known anyone with feet pain, heel spur or plantar fasciitis associated with Lyme disease? Please join the conversation in the comments below.

This is one of a series of short videos to explore topics I have seen in my practice. Dr. Daniel Cameron #LymeConversations

1. Miller JR, Dunn KW, Braccia D, et al. Lyme Disease Manifestations in the Foot and Ankle: A Retrospective Case Series. J Foot Ankle Surg. 2016;55(6):1241-1244.
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It’s a common bartonella symptom

Pain in feet every day all day. Mornings are the worst then as I get moving around it improves enough. I have been catching myself standing a little funny lately. To put pressure on the outer side of my left foot and inner side of my right hurts so I think I’ve been compensating by leaning away and to the right. My slippers both bow out in the opposite direction. From what I understand, bartonella is to blame for this particular pain, which by the way, is very similar to the pain and spasms I have in the meaty part of my hands (Palm area closest to wrist).

My feet hurt very badly for months, maybe even years. Getting out of bed and putting weight on my feet first thing in the morning was the worst. I had to buy new shoes in order to be more comfortable.

That morning feeling as though my feet were "full of blood" seems to have mostly gone. Nowadays there are occasionally other sensations (pain/achy or like adrenaline rushing through them) but always first thing in the mornings.

Bartonella causes this

Intense heel pain has recently started after almost 5 years of become sick with Lyme as well as much overall improvement. Which I find strange. My PT advised I do not have planters fasciitis. We were just talking about this Rebecca Bekolay! Interesting

It is because lyme uses up all our b12 d3 and magnesium during reproduction cycle . Tell patients to take magnesium . I use Jigsaw it has many of the nutrients we lose during the active phase of lyme. I have had lyme twice. Lady farmer.

I often have burning pain on the bottoms of my feet, feeling like I’m stepping on glass when I get up from bed or sitting too long, numbness in half of each front toe that sometimes spreads further, and constantly tight calf muscles, cracking and jumping tendons and weird feelings that make it very hard to sit or stand still for long.

Lyme since bitten 2003 not diagnosed till 2007. During that early period had problems with Achilles tendons told it was permanent damage however once on antibiotics it resolved. Also developed plantar fascitis which resolved on antibiotics. Had many symptoms in feet, like walking on gravel, pain in feet also pain in little bones top of feet and pain walking on rough ground or incline planes across or up or down. Eventually all resolved as most of my symptoms on combination antibiotics. They return without antibiotics. Currently causing problems and have lost my Lyme friendly doctor.

Yes...terrible feet and shin pain. Attributing to Bartonella 😟 What antibiotics/antimicrobials work best...help?

I had this... all cleared up after a few months of oral antibiotics! Never tested positive for Lyme but got treated for it based on a whole bunch of symptoms and it made all the difference.

My foot pain never went away after 2 years in antibiotics and I am still actively treating chronic Lyme, Babesia and Bartonella. I have bad pain/ tenderness on bottoms of my feet especially stepping out of bed the first thing in morning. My Naturopathic Doctor treating my illnesses says this is directly linked to the co- infections and a common symptom of the co-infections ( Babesia and Bartonella)

I have had issues with my feet, plantar fasciitis. I have done PT, steroids, and injections. Best thing that is helped me is good shoes and a rigid arch support! Also I avoid being barefoot or any flat shoes

Yes have had plantar faciitis for many years. Had physical therapy and steroid injections, nothing helped. Eventually got better, but was reoccurring. Since being diagnosed and on abx for 1 year+, have not had a reoccurrence yet.

I actually dealt with Plantar fasciitis for years before I was diagnosed with Lyme. The Rocephin IV that I was given resolved that pain but my feet have been swollen, numb & tingly ever since. 10 + years now.

I have had both feet fused due to foot pain for nearly 20 years...still recovering from the last surgery in Nov. weight bearing finally a week ago.. but due to foot position this time (no cast) my foot was not at a right angle any time, . So now..painful heal and side of foot..most likely plantar fasciitis now according to the therapist

Plantar fasciitis, tendinitis, and a cyst. Didn’t have it before lyme.

I had plantar fasciitis before I contracted Lyme and babesia. Custom orthotics resolved it. Then I contracted Lyme and the pain in the arch returned even while using the orthotics. I also now have problems in the knee, hip, and low back. I've never had problems in the low back, only the upper back and neck. I am being treated for Lyme and these symptoms seem to have improved but not resolved. I am also having problems with nerve pain and extreme sensations when exposed to cold or rain. Your thought is fascinating.

I suffered greatly with PF. Mine became so bad, in both feet that the chronic swelling strangled the nerves and I lost the feeling in both feet and partially up my right leg. Finally after, 7 cortisone shots, endless pain meds, anti inflammatory meds, neurological meds, 3 acupuncturists (covered by my insurance) and 2 surgeons suggesting 2 radically different procedures a friend insisted I see her very “special acupuncturist” who did not accept insurance. He doesn’t use any electronic things. Just what I call old school Accupuncture techniques. 1 visit and I was out of pain enough I could stop the pain meds and in a few months I was completely healed - and the side effect of his treatments resulted in no more hay fever! 12 years later, still no seasonal allergies and no PF! I was diagnosed with Lyme just 3 or 4 years ago. It’s hard to say how long I’ve dealt with Lyme as I’ve been often endless times over my life and we know the bullseye or rash isn’t a telltale sign. I am sure Lyme adds to this problem for many since we all struggle with inflammation and most people, according to my podiatrist, have heel spurs to some degree. The inflammation just aggravates it.

I had terrible plantar fasciitis and pain in my feet for years before I was diagnosed

ME; plantar fasciitis and HEEL SPURS for 25-30 yrs. on abx 2 yrs./supplements with no success in helping this situation. 12.26.18, i had heel spur removal & achilles tendon surgery! prior 2-3 weeks it was like stepping on a NAIL EACH STEP. i couldn't take it any longer! in nursing home 37 days recouping; home 1 week, and hope to get out of this BOOT i have had on 24/7 including sleeping tomorrow at drs. appt!!

I have had Lyme almost 20 years, was finally diagnosed 5 years ago and also have co-infections. I’ve had foot pain come and go but it became chronic about 3 years ago. It started on the outer sides, then the bottoms of my feet were very painful and hot for months. Now I deal with arthritic type pain in my ankles and pain in my heels. I’ve been diagnosed with plantar fasciitis but wear Vionic and Kuru shoes to help. Every morning, it’s difficult to get moving but walking and exercise help for the rest of the day.

I am a podiatrist never known it associated with Lyme interesting

What happens when you can't take antibiotics ? I had a life-threatening reaction to 30 days of doxycycline- my platelets started breaking down ! The next infection, E.choli from lodged kidney stone, left me with a c.difficule infection - I'm terrified to take any at all !

I have plantar fasciitis on my left foot and it really hurts. I’m on herbal therapy right now and haven’t seen a difference yet. Both feet usually hurt and they get hot and swollen too.

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2 weeks ago

Dr. Daniel Cameron

Access to care for Lyme disease can be a problem

Over 300,000 individuals contract Lyme disease every year in the USA.

These individuals find access to care easier if they meet the CDC’s surveillance case definition or two-tier laboratory criteria for Lyme disease.

The CDC’s surveillance case definition is inclusive of an erythema migrans rash, heart block, Bell’s palsy, or Lyme arthritis. The two-tier laboratory criteria require laboratory confirmation with a western blot test.

Individuals find access to care problematic if they do not meet the CDC’s criteria for Lyme disease.

Examples of individuals who do not meet the CDC’s criteria for Lyme disease include:

Lyme encephalopathy1
Chronic neurologic manifestations of Lyme disease2
Neuropsychiatric Lyme disease3

Have you had problems with access to care if you did not meet the CDC’s criteria for Lyme disease? Please join the conversation in the comments below.

This is one of a series of short videos to explore topics I have seen in my practice. Dr. Daniel Cameron #LymeConversations


1. Logigian EL, Kaplan RF, Steere AC. Successful treatment of Lyme encephalopathy with intravenous ceftriaxone. J Infect Dis. 1999;180(2):377-383.
2. Logigian EL, Kaplan RF, Steere AC. Chronic neurologic manifestations of Lyme disease. N Engl J Med. 1990;323(21):1438-1444.
3. Fallon BA, Nields JA. Lyme disease: a neuropsychiatric illness. Am J Psychiatry. 1994;151(11):1571-1583.
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The VA only considers arthritis a symptom. Neg testing and you are out of luck. :-( But they'd be more than happy to give you all the horrible psych drugs you could ever want!

I was told very rudely by a hospitalist that “No one here thinks you have Lyme! The test you had is HIGHLY accurate.” I was discharged with a shrug, a Vicodin prescription, and a recommendation to see an MS specialist at UCSF, even though they didn’t think I had MS. Note: I had negative Lyme AB screening tests on both blood and CSF. Turns out I got my Lyme overseas. I later got a reply from my email to the CDC (asking how to get tested) telling me that Lyme tests aren’t recommended for overseas acquired Lyme and I should have a C6 test instead. The Neuro in the hospital didn’t do a thorough enough history to figure out I got it overseas. I never had a C6 done, but an IGeneX IgM WB was IGeneX positive. Without my ILADS doc, I never would have been diagnosed or been treated.

Yes, my daughter was diagnosed with Lyme meningitis but did not meet the CDC criteria. Every Lyme test came back negative and resulted in an extra 4 days of costly hospitalization until the insurance company would authorize home health care to teach me how to give IV antibiotics via PICC line. And then thankfully, we found Dr. Cameron!!!

I'm sure this is why I'm suffering for over 33 years.

Yes. I developed POTS and had cognitive issues, such as depersonalization, brain fog, depression, anxiety, fasiculations, tremors. neurologist pcp and cardiologist all dismissed me. Kept doing my own research discovered I had Lyme. 3 days into doxy POTS resolved after 2 months of symptoms. NOT COINCIDENTAL. Of course I was diagnosed by ILADS doctor and spent a lot of money! As a nurse practitioner I still can’t believe that it is not recognized. So sad.

Even if we do meet the criteria we are limited on the treatments. I was given the boot from the hospital system after my first round of antibiotics didn’t work. It had been 2 years in the works to get the correct diagnosis.

Yes I went through 8 doctors, My primary Care doc 2 years before I found my LLMD & I had a bullseye rash and 30 days of doxy . One year later diagnosed with Rheumatologist diagnosis’s was mono, lupus, RA, sleep apnea. Now 3 years out still on 3 antibiotics

This is real , sad , and true. And exactly why my beloved twin suffers horrific debilitating, deterioration of every part of her body since pulling a disease carrying tick off in 2004. It even left a classic 🎯 bullseye to mark its mean bite but she was denied appropriate care.

Jessica Snyder

Santos Edder... follow him

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2 weeks ago

Dr. Daniel Cameron

Personalized Lyme disease treatment: Not one size fits all.

There is a growing recognition of the complexity of tick borne illnesses.

There are doctors who advocate a one size fits all for Lyme disease. For example,

A single 200 mg dose of doxycycline for a tick bite.

A one-time 21 day course of antibiotics Lyme disease except for Lyme arthritis.

There are doctors who encourage personalized Lyme disease treatment.

I find personalized Lyme disease treatment for complex cases helpful.

Were you offered personalized Lyme disease treatment if you needed it? Please join the conversation in the comments below.

This is one of a series of short videos to explore topics I have seen in my practice. Dr. Daniel Cameron #LymeConversations
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Close to two years of antibiotics.. we need a cure not a fix that most people i know relapse after .. no one working trying to live a somewhat normal life can do dr Horowitz new protocol.. this truly is a crime especially the young ones suffering..

I offer personalised Lyme disease treatment for over 62 different strains of Lyme disease. www.thehealthpantry.co.uk

I live in the city of health care and we still have no one to even treat the one size fits all let alone do personalized.

I saw llmds and an llnd, they didn't give me personalized treatment either. Gave up on all doctors and had better outcomes at costs that were manageable with Buhners lyme protocol all on my own. No one is working on addressing b-cell damage from ospa. No one. Llmds won't talk about it with thier patients but 85 percent if people who contract lyme disease will become immunocompremised with b-cell AIDs. It's why many of us never actually get well no matter who we see or how much money is thrown at this disease. You might reach remission but you are very unlikely to stay there. Why dont more llmds level with their patients about ospa and the permanent damage to thier b- cells? Sure persister cells are a problem, confections too (or it maybe more accurate to say opportunistic infections), so is biofilms....but the biggest problem, the one that there isn't yet a work around for is non HIV AIDS that is cause by lyme....and it isn't going away until doctors aknowledge it, and push for reaserch on it. Till then there will be no cure. Till then you can go bankrupt pouring money down this black cesspool of a hole of illness and relapses after short expensive (mostly paid for out of pocket) remissions will continue. Truthcures.org

Very true, very interesting post, as always.

I go to an LLMD & have been on both antibiotics & herbals, but the herbals and supplements are prescribed based on what their office provides, like Cowden Nutramedix herbals & high quality supplements. My doc does personalize my treatment based on my symptoms.

I was diagnosed of Lyme disease four years ago. I was so terribly sick. I think my worst complaint was the severe headache. I was taken doxycycline hyclate 100 mg as treatment for Lyme disease, twice a day for 21 days. and didn’t seem to be improving. I did not display a rash or any kind of bull's eye. Diagnosis was from blood test. We tried every shots available but nothing worked. My Lyme Disease got significantly worse and unbearable because of her cognitive thinking. In 2015, our physician advised we go with natural treatment and was introduced to Organic Herbal Clinic natural organic Lyme Disease Herbal formula, I had a total decline of symptoms with this treatment, the fever, joint pain, weakness, shortness of breath, and anxiety. and others has subsided. Visit Organic Herbal Clinic official website ww w. organicherbalclinic. com

Sophie La Touche

Is there ANY medicines for those of us who are now living with (B cell AIDS) immunosuppression due to Borrelia? Because of this, I live with a host of other, very serious disorders none of which my GP has an idea of how to treat nor, seemingly, who to refer me to.

I was given the standard 21 days doxycycline and was still very ill. I was told I may not feel better for at least 6 months. That was 3.5 years ago and I am still suffering

The question is too advanced... my “Specialized” doctors still think you can’t get Lyme in the South and say it’s a “Northern Disease” However with tenacity and research I have found an (Internist ) I have to pay big cash to who is willing to work with me individuality - but Do I trust him? I feel like I’m playing Russian Roulet - yet some help us better then none. This is after the standard 28 day Picc line from an infectious disease doc that strictly followed the guidelines and would not treat past that - Neuro Lyme

PCP told me I had a "false positive" & the ID Doctor told me it was EBV & wouldn't even test me for Lyme. Had to pay out of pocket to get a diagnosis. Now due to faulty testing & delayed treatment, I have Chronic Lyme & can't afford an LLMD let alone treatment. 😑

I am very lucky to have a good LLMD. And the treatment depends on how I am reacting to things. Trial & Error. Because he knows each person is different.

And yet that is what we get from most Dr’s

I was on Doxy for 30 days then on an IV antibiotic for another 4 weeks. That was two years ago and I still have lingering Neuro issues, cardiac issues and the general feeling like crap. My daughter received a 21 day regimen of amoxicillin and she still suffers too.

Doccicline daes not Work. Not for a month.

To me it is evident that personalized treatment is required. Most doctors may start with the standard treatment and that’s ok. But what happens if they don’t or if that fails is the real problem. Most doctors don’t have a clue what to do in that event. So, if they are honest they will just say, “I don’t know.” But many are too dogmatic or arrogant to admit that and so then turn the blame on the patient. In my 10 year odyssey with Lyme I have heard so much denial and blame it is shameful. And I’ve also heard “I don’t know,” which is frustrating but at least I appreciated the honesty. This disease process is so complex that even with personalized treatment from a highly respected and well known LLMD, I still suffer at times and always have to live at less than normal capacity. What is needed is not only personalized treatment and more research, but also better education in the general medical community.

Doxycycline didn’t do a thing for me very complex case , over 4 years treating late stage neurological Lyme . Definitely nit a one size fits all .

I was diagnosed with late atage Lyme in 1991. I had 21 days of IV Rocpehin, 28 days and 35 between 91-93. Symptoms came back 5 years later retested and negative. Was told I had Fibro. Have dealt with flares biannually ever since. Just treat with rest and amitriptyline. The older I get the more painful it is.

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3 weeks ago

Dr. Daniel Cameron

Lyme disease and alcohol don’t mix.

Lyme disease is difficult enough for my patients.

Lyme disease can be even more difficult if my patient starts drinking alcohol.

My Lyme disease patients do better if they stop drinking.

I have Lyme disease patients who have relapsed if they resumed drinking.

Have you found that Lyme disease and alcohol don’t mix? Please join the conversation in the comments below.

This is one of a series of short videos to explore topics I have seen in my practice. Dr. Daniel Cameron #LymeConversations
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I was undiagnosed, but constantly sick, for 27 years. I was just diagnosed almost two years ago, and still getting treatment. I have never been a drinker, but I'm fine with one (two at absolute most) glasses of wine or champagne. I have far more issue with food intolerances, so many liquors are out for me, as well as beer. I very very rarely have one mixed drink, but I have to be extremely careful about what it is made from. Most liquors are made from grains, which I can't tolerate at all.

Alcohol is sugar. Spirochetes feed and grow from sugar. Instantly.

My daughter has had Lyme for almost 10years now. I do know she drank a little when in her 20s. Now she did mention she thought she was allergic to wine because she could drink one and her face became flushed and she also became very hot, where she would lie down. She doesn't drink nor has for several years.

Hummm...I just thought I was getting older...looking back around to the time I believe I contracted Lyme, I could no longer tolerate alcohol. Drunk after a sip or two, ill to the point of vomiting....I stay away from it now. Could there be this connection?

Thanks to MCAS and histamine issues brought on by lyme and mold I can’t even drink kombucha right now. Don’t want the other stuff anyway.

I do drink a little alcohol. But I certinly cannot drink much alcohol without it making my TBD symptoms worse.

I had to cease all drinking to get better. Now I find I can drink hard liquor in extreme moderation but wine is still intolerable and gives me a multi-day headache. I had the same experience as many of you. Before I was diagnosed I had a drink at an event and was not sober enough to drive 4 hours later. That should have been a sign I was ill. When I was healing I was upset that I couldn't eat sugar or drink alcohol but my as my mom reminded me- we shouldn't be doing that anyway!!

I think I'm allergic to alcohol. I will start to feel like I have a hangover after about 30 min of when I have a drink. I barely ever have a drink because it's not worth it!

I was getting really slurry after one glass of wine. I had no idea why at the time. It made me very sick. Same with beer. But, with beer, I'd be rolling around in pain the next day. Now, if I'm having a bad, anxious day, I have one good quality whiskey with lots of sugar free mixer. It's eases everything down and helps me sleep. I only gave in to it because I had not slept for over 2 months and couldn't cope.

I got diagnosed after getting drunk on one glass of wine. I knew there had to be something major going on for that to happen. I'm a lightweight, but I'm not that bad. Lol

Last winter, I was having 1-2 beers every night and I felt terrible. Most days all I could do is lay in bed and cry from all the pain I was in. Having the beer at night before bed made it so I could forget that pain for a little while and get some sleep, but it was a nasty, never ending circle. I never even considered it could be the alcohol that was making things worse until now. Last winter, I thought it was helping. But I don’t drink more than one or two beers per month now and my Lyme hasn’t been acting up nearly as bad as it usually does this time of year.

I developed an alcohol intolerance when I had Lyme disease and though recovered for 10 years now, I still cannot drink. If I try, I am sick within about 10 minutes. Even Kefir water, which is fermented and has an alcohol content of 0,5% gives me the same reaction instantly.

I think my body just let me know I'm pretty intolerant to alcohol since being bitten by a tick. 😞

Drank a mixed drink for the first time last week..heart palpitations since!! Never again!

If I drink, I feel like my heart is pounding out of my chest when I go to bed. I feel terrible for more than 24 hours after. I love my wine but it's not worth it anymore. I hope one day I can resume an occasional drink

Not a heavy drinker more of a social 2-3 drinks. Definitely effects my memory issues more, sensitive to red wine & brown liquors. Silver tequila straight in small amount is tolerable. This disease is so complicated.

My liver, kidneys and spleen were taxed by the Lyme and Bart. I also have the MTHFR Gene c677t positive, which means I do not eliminate well with that as well. I stopped all drinking, I become toxic sick. Not worth it at all👍💚

I stopped drinking altogether when I started taking multiple herbs and supplements. I a few sips of scotch at holidays but will have to pay more attention to after effects now!

I can drink 2 glasses of wine and be okay. Just feel a bit sluggish the next day.

Yup. I can drink but not very much. No this sweet either. Just a light beer or two.

besides alcohol and antibiotics do not mix at all. , but I can see how that would be not good with all the sugar. and beer has the yeast ..

I went three years without a drop to drink while I was on heavy amounts of antibiotics and pain meds. Slowly I was able to get off pain meds. My body started functioning better after withdrawal and I felt so proud of myself! Then I got off all antibiotics and meds and decided to celebrate at my 40th with a glass of wine. And then drank more when I turned 41 and now even though I know it’s not good for me I crave it. Socially mostly. Like I feel like I was cooped up and stuck in bed for so long that a glass of wine makes me feel like I’m included again. And I don’t feel super awful after drinking it. But I’m feeling defiant and I am having trouble finding the same willpower and discipline I had for so many years. I feel tired of being strict with myself and at the same time want to live my best healthiest life. So it’s hard to find balance when you see a bit of silver lining after being terminally sick to feeling almost normal again. I was able to cheat death with hard work, healthy food, herbs, and great care. So celebrating with a glass of wine should be appropriate but I know it’s not the right celebratory drink for Lyme. 😬 **orders a cup of tea**

Hangovers lasted three days for me. It's been years now since I tried to drink.

Definitely doesn't mix well. I drink very little alcohol and not much because it triggers tachycardia for me.

I miss the occasional tipple 😪

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3 weeks ago

Dr. Daniel Cameron

Proceed with caution when diagnosing fibromyalgia, chronic fatigue syndrome, or Lyme disease.

Dr. Steere advised doctors to proceed with caution when diagnosing Lyme disease in 1992.1 Three out of four patients referred to his rheumatology clinic for a Lyme disease evaluation instead suffered from fibromyalgia or chronic fatigue syndrome.

I also proceed with caution when considering fibromyalgia or chronic fatigue syndrome. Neither condition can be confirmed with a laboratory test or radiologic procedure. Even the trigger points described in fibromyalgia patients could be due to synovitis, bursitis and/or sacroilitis seen in Lyme disease.

Have you been informed of the need to proceed with caution when considering fibromyalgia, chronic fatigue syndrome, or Lyme disease? Please join the conversation in the comments below.

1. Steere AC, Taylor E, McHugh GL, Logigian EL. The overdiagnosis of Lyme disease. Jama. 1993;269(14):1812-1816.

This is one of a series of short videos to explore topics I have seen in my practice. Dr. Daniel Cameron #LymeConversations
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Funny how they're super quick to diagnose with fibro and chronic fatigue but they won't touch tick borne zoonotic infections with a 10 foot pole :(

I went to the " Lyme expert" Dr. A. Steere years back without knowing his history. When I mentioned all my issues started from having bad reactions to the Lymerix vaccine, his whole demeanor changed, he said "I did not have Lyme disease" and practically threw me out of his office. I never felt so defeated and demoralized. Now I know why.

Dr Steere is the reason most can’t get a Lyme diagnosis! He’s a criminal and changed the case definition to push a vaccine that also caused Lyme disease! He belongs in jail

This is in 1959 from a government science organisation in Australia the CSIRO that has had significant funding cuts over the years about unique pathogens in animals. But still no follow up research for human transfer and still denial https://doi.org/10.1071/ZO9590105

e have the opposite in New Zealand....Everyone has fibromyalgia or MS, no one has Lyme. If you test possitive, its a false possitive even with a bullseye rash. SIGH!!!! Now My husband is fighting blindness and no treatment. I would think Common sense would prevail but no....

I think there there are probably other conditions which cause chronic fatigue and fibromyalgia, but once presented with the long list of symptoms associated with Lyme, as I'm sure all LLMD's would suggest, there needs to be an obvious differential and suspicion of a Lyme infection. I was also surprised to see how aligned mold toxicity is with Lyme symptoms, like really, they are all the same. Then the other diseases. But Lyme is I believe the main cause of these and should always be assessed. Yes I am rambling right now lol (pulled an all nighter). but you get my point.

If you are a Steere follower, I will unfollow.

It is all Lyme

It's not diagnosed enough. The CDC's Lyme test has too many markers. They can't afford to make this plague look real. Our government just may be liable; the own patents for nanotechnology bioweapons.

Lynn Rotolo.

I don't know about everyone else's, but the trigger points in me are worm nests!

Or worse - THE OTHER WAY AROUND! -allowing the Lyme bugs to reproduce

In Spain, I was diagnosed CFS in one of the best hospitals here, when I mentioned the internist about Lyme disease, he said: We do not have that in Spain- after that I have been tested in Arminlabs and it was negative although I have a number of viral reactivations.

Yes, miss Dx from 2007-2018... finally getting treatment for chronic Lyme with. oral antibiotics, minocycline...6 months now, DR wants at least 1yr...I was having serious upper GI issues and decided to go off all my meds in October for one week... Then reintroduced the antibiotics in the meloxicam... Have not been back on fibromyalgia meds or antidepressants, both which I think we're making me more depressed... I still am dealing with pain and slight upper GI issue but I don't need the 12 pill regiment but the doctors were prescribing me... I'm doing supplements and vitamins and I think I have had the best success with minimal drugs... I get with fibromyalgia there are many unknowns... But it's a sad shame I had to wait this long for proper treatment & maybe an alternate Dx... I lost my significant other of 13 years because he just couldn't deal with what I was dealing with... Still breaks my heart to this day and it's almost been 7 years...😢

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3 weeks ago

Dr. Daniel Cameron

A "PTLDS" diagnosis does not mean a tick borne infection has cleared

The term “Post Treatment Lyme Disease Syndrome” or “PTLDS” has been proposed by the 2006 IDSA guideline committee for Lyme disease patients who remain ill after 3 week course of antibiotics.1 A recent Johns Hopkins study confirmed the existence and severity of “PTLDS” in some Lyme disease patients.2

There are doctors who have assumed that a diagnosis of “PTLDS” proves a tick borne infection has resolved.

Yet, there is no reliable test to prove a tick borne infection has resolved in “PTLDS” patients.

I have opposed use of the term “PTLDS” until we have a reliable test to prove a tickborne infection had resolved.

Have you been denied treatment based on a diagnosis of “PTLDS”? Please join the conversation in the comments below.

1. Wormser GP, Dattwyler RJ, Shapiro ED, et al. The clinical assessment, treatment, and prevention of lyme disease, human granulocytic anaplasmosis, and babesiosis: clinical practice guidelines by the Infectious Diseases Society of America. Clin Infect Dis. 2006;43(9):1089-1134.
2. Rebman AW, Bechtold KT, Yang T, et al. The Clinical, Symptom, and Quality-of-Life Characterization of a Well-Defined Group of Patients with Posttreatment Lyme Disease Syndrome. Front Med (Lausanne). 2017;4:224.

This is one of a series of short videos to explore topics I have seen in my practice. Dr. Daniel Cameron #LymeConversations
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Dr. Wormser misdiagnosed me. Conflict of interest. I don’t trust him

46 years of fighting these infections for me - I won't go to any doctor that might diagnose me with PTLDS, because that's NOT what I have - I have an active infection - proof? My symptoms ease any time I go back into treatments.

I had a re infection in may 2018. Was treated with iv. I am still very ill. Just visited an ID doc on tue who said that shoulda taken care of it. It can’t be Lyme. BUT if it is the only way to tell is spinal tap. I’m like 🤦‍♀️ no thanks I’ll just sit over here silently in pain and non functioning.

It has been 2 and a half years since the bite. My neurological symptoms have become debilitating for the past 6 months . At the age of 43 I'm no longer driving,but can't find a doctor around that believes it's Lyme's. I have also developed allergies to beef and pork.

It so does the exist! I have been ill with symptoms for many years!

I have been told several times by the VA that since I had 2 weeks of Doxy I just have lingering after effects. (3+ years later!)

This is 2018 and the term PTLDS is inaccurate and misleading. The IDSA needs a new acronym that identifies persistent Lyme.

Please help the sick people who actually need the money to keep a roof over their head. https://www.facebook.com/donate/485446418528259/487479011658333/ Please NETWORK AND SHARE, help if possible 🌈🐺💋🌹💯💚🤢 Sincerely yours, Eliz Pero PLease Help

I got "PTLDS" but was NEVER TREATED FOR LYME before it started so my chronic condition was diagnosed as psychosomatic. I ditched the "regular" doctors who wanted me to just take Xanax and advised me to "stop seeking attention with fake tremors." I went to a naturopath and, well, I'm alive and living and no longer have those tremor issues. ☺️😁💚

Only the tick that bit you knows! It’s THAT kind of cloaked illness. 30 years for me with multiple co-infections. Soooo many doctors with conflicting opinions and diagnoses. I maintain firm in my beliefs that until Big Pharma finds a way to treat and cure with a money making medicine, we are just pawns. Longtime ago I saw the Documentary on that girl that was bit by a tick and recall hearing in there that the Lyme spirochete is actually patented and owned by a large pharmaceutical. (Memory is hazy here). Hope I am wrong but don’t think so 🥺

U

Eight years. Got close to getting well 2-3 times. Always plummeted down. Off of meds, trying holistic treatment. Way too early to tell if it is working. Had adverse affects to the oils, have to try another way. Wish the damn meds had just worked!

After 5 weeks of doxy, I initially got better that 2 months later developed more cardiac and neurological symptoms. My PCM just wanted to put me on anti-seizure meds and wouldn't test for co-infections or anything else. I now pay out of pocket for an ILADS trained Dr. and I feel nearly normal again.

I visited Dr. Wormser’s associate Dr. N before and years after being misdiagnosed with MS and subsequent 4 weeks IV Rocephen prescribed by a LLMD and was told both times I never had LD despite a bulls eye rash, positive Lyme bands and spinal tap. I was told the Ingenex lab was a hoax and I never had LD. Symptoms persist. My husband died from “MS” 4 years ago which I still believe was undiagnosed LD. What are the chances we both developed MS and symptoms around the same time. Over 30 years now. I wonder my fate.

Johns Hopkins Dr told me Im fine, quit my meds and forget about it! She will be an as*hol* till she gets Lyme! This steams my mind!😤

Where is drs Cameron's office located?

I’ve been sick for 2 years, horrible

I was on nearly 2 months of antibiotics. I felt great, like I had my life back. After treatment was done I started to deteriorate again. It was soooo upsetting to loose that bit of spark I had. Now my doctor thinks I’m fine since I had one round of treatment. But thankyou herbals for helping me finally improve. I still deal with issues but it’s not nearly as bad. There needs to be a cure 💚

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