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Disagreements within families over Lyme disease treatment.

There is disagreement within the medical community over Lyme disease treatment.

I have seen the same disagreement within families over Lyme disease treatment.

Some family members have concluded that chronic manifestations of Lyme disease do not exist, that serologic tests are reliable, and that treatment is not effective.

There are other family members who have concluded that chronic manifestations of Lyme disease exists, the symptoms can be severe, the serologic tests are not reliable enough to replace clinical judgment, and treatment can be effective.

The disagreements within the family over treatment can be overwhelming for someone with Lyme disease.

I find it helpful to discuss disagreements within families over Lyme disease treatment.

Have you seen disagreements in the family over Lyme disease treatment? 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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The problem is that Lyme patients/advocates, see Lyme in every person in their family. And there is often truth in that. Also, the family is secretly afraid of 'catching' Lyme from them. Our family was torn apart by this until I diagnosed my mother, and she became one of my group members. The other truth is that no one ever wants you to honestly answer 'how are you doing?' "Fine," is the best answer to keep the peace . Of course, I spent 15 years in dark glasses, lost all ability to earn a living, and had my own plates and forks still to this day.

So sad that there is so much controversy. It increases stress which decreases healing😞. Thank heavens my husband was supportive of my treatment decision.

Relying on Lyme disease tests rife with problems.

Most cultures are negative unless taken from the margins of an erythema migrans rash of Lyme disease.

Serologic tests measure the body’s immune response rather than an infection.

The western blot tests can be negative.

The serologic tests for co-infections can also be negative.

I have to use clinical judgment when the serologic tests are negative.

I have to evaluate my patients for other conditions even if the tests are positive.

Have you found Lyme disease tests a problem? Please join the conversation with others 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 tested negative for Lyme and Babesiosis but was still very sick and losing ground. Under the care of Dr. Cameron, I was treated for my clinical Lyme symptoms and ultimately Babesiosis which resulted in success after four years of treatment. Dr. Cameron took special care to rule out other illnesses prior to treatment. Post abx treatment for 23 months, I have been gradually regaining my strength and energy. Dr. Cameron literally gave me back my health because of his willingness to treat based on my symptoms - not test results.

Yes, I tested negative for Lyme at least seven times, including the Western Blot test. Yet I had many symptoms with each infection or relapse. Dr. Cameron treated me with antibiotics on the clinical basis of symptoms, and each time my symptoms abated. I have been Lyme free now for five years

Yes! I’d been infected for 6 years before I got tested. I was very sick and had a low IgM response and almost negligent IgG response. I was infected overseas, so I wasn’t CDC positive, despite having antibodies highly indicative of Borrelia. I was IGeneX positive. I’d previously had screening tests run (A/B) on blood and CSF and both came back negative.

Yes! I’d been infected for 6 years before I got tested. I was very sick and had a low IgM response and almost negligent IgG response. I was infected overseas, so I wasn’t CDC positive, despite having antibodies highly indicative of Borrelia. I was IGeneX positive. I’d previously had screening tests run (A/B) on blood and CSF and both came back negative.

My tests were negative. 6 years later positive -. Then I was treated - too late. Still after a positive I was told 2 years later it was a false positive. Rash biopsy showed positive for 3 bands. Still battling

Wow I had no idea it was possible to take a culture of the erythema migrant rash! Heck I didn’t even know what that meant on a questionnaire. ( unknown Lyme lingo) So where I said No, I should have said Yes. Due to complexity of Lyme Disease & it’s effects on multi body systems it needs to be assumed one has no clue Thinking learning another language.

Tested Negitive on IGg and Possitive on Western blot. Doctors interpreted that as a false possitive even with a bullseye rash. In New Zealand and Australia, because we don't officially have Lyme disease here, (according to Drs) then Most key signs are overlooked and the test is the end all and be all.

We didn't get positive bartonella and babesia until we used the Igenex Lab.

I've had a positive and negative test on NHS

Yup, the VA keeps testing me for Lyme, I think 4-5 times now over 2 years. It keeps coming back neg so therefore I don't have Lyme. Isn't that the definition of insanity?

Donna Paolillo Churry. Important re: testing...

Amylynn Tallman

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Medicine has worked together to conquer a growing number of diseases.

Medicine appeared to be on the brink of conquering Lyme disease until the discovery of chronic neurologic manifestations of Lyme disease in 1990.

Dr. Logigian working with Dr. Steere, the doctor credited with discovery of Lyme disease, described patients ill for up to 14 years with chronic neurologic manifestations of Lyme disease.

Since then doctors have been divided over the existence and severity of chronic neurologic manifestations of Lyme disease.

Do you think Lyme disease has divided medicine?

Please join the conversation with others 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 do think Lyme disease has divided the medical community and I think someone should be held (Alan Steere is first person who comes to mind) accountable especially if they were aware their choices as a professional would result in suffering and death on an massive massive scale. I think it’s time to treat this situation like a crime against humanity frankly. Science is and political institutions are not clear on path forward, anemic funding and rejection of free money in VT to make existing programs more robust and more impactful, zero surveillance plans, and now the military gets tax payer follows to treat their clothing to protect them from occupational hazards ....but not our teachers or highway workers? What??? It’s shameful and I hope The stigma ends soon like it did for HIV/AIDS’s hoping 🤞🏻💚💪🏻 Roberta Wallach Elissa Guest Zac Allentuck

No doubt. I have medical PTSD as a result of being dismissed and spoken to nastily by western medicine docs and main stream hospitals. My LLMD has no problem sending me to neurologists, GI specialists, endocrinologists, etc. - but never have I seen a main stream doc give the same credit and same respect to an integrative lyme specialist.

I believe doctors are afraid to get too involved when it comes to Lyme period. Doctors have lost their medical licenses or mysteriously died!

find the defectors from institutionalized medicine. because we need our llmds to be working from BOTH sides of the treatment debate in order to treat this long term stuff.

I don't think medicine has been divided. I feel strongly there are groups and entities that know exactly what is going on and they are in control of education taught to new doctors and those in medicine have been misinformed. This has divided many peoples lives. Caused paths that wouldn't ever been taken but in survival and the whole thing has cast a doubt on the very people that are suffering. Not only medically but personally. People losing the ability to work and enjoy life is the tip of the iceberg and that is way more then anyone deserves. This divide's families, husbands and wives, parents and children and beyond, all at the hands of the people who know and have known exactly how and what this is and has become.

Divided medicine, yes. Mainstream Doctors have little accurate information about Lyme persister cells and how biofilm bacterias behave..Drs are not evil people, they are fed wrong information and given tough Guielines to adhere to. Mention the parasitic element of lyme to a mainstream Doc and you end up on anti psychotics and 3 months of psychotheraphy. You can treat the bacterias untill the cows come home, but if you leave out the parasitic element of lyme, your back to square one, and then theres the antifungal element also....Never ending ferris wheel of symptoms. Lyme Bacterias are adapting and ever changing also . We say man came from Apes and we believe in evolution scientifically speaking,, but diseases, parasites and bacterias changing, Go forbid you even mention such medical nonsense.

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Fallon and colleagues described worsening of symptoms of Lyme disease in their 1992 paper in Psychiatric Quarterly.1

“The worsening of symptoms during initiation of antibiotic treatment is thought to be a variant of Herxheimer reaction as seen in the treatment of syphilis.” writes Fallon. He added, “The reaction can sometimes be difficult to distinguish from an allergic reaction to the medicine.”

Fallon and colleagues described three examples.

“some patients in our sample experienced panic attacks for the first and only time when starting on antibiotics.”

“Others have reported an intensification of depressive symptoms, suicidality or anxiety.”

“Many reported an increased startle response and photophobia during the first few days of antibiotic treatment.”

I have seen worsening of symptoms not only when starting antibiotics but at other times in their illness.

Have you ever experienced a worsening of symptoms during your treatment 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. Fallon BA, Nields JA, Burrascano JJ, Liegner K, DelBene D, Liebowitz MR. The neuropsychiatric manifestations of Lyme borreliosis. Psychiatr Q. 1992;63(1):95-117.
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dan, great job of short paragraphs for us neuro cognitive patients ;) hugs my friend, bettyg, iowa

Since 2013 Each round my symptoms definitely became more increasingly intense. The anxiety, depression, light, smell & sound sensitivity, I could taste smells.... extreme nausea, extreme fatigue, literally falling asleep when talking & unaware of it’s occurrence just like narcolepsy. I became ultra sensitive to foods, Lyme rage, constantly crying, self blame, thinking things would be better if I wasn’t here, hopelessness. Breakouts on my scalp (Babs?) that then would go away. Raised skin bumps The neurological effects were unbelievable. I can see in retrospect how others may have thought I “totally lost it” it’s hard to explain something that others are not educated about, never heard of it or have their own assumptions. When you have difficulty understanding this very complex disease yourself. I previously worked in a large retail pharmacy. After my diagnosis, a pharmacist asked me and I quote “what happened to you?” He seen the “types” of meds used for neurological symptoms & the amount of abx. When I said I got bit by a tick, he was oblivious to what I was talking about & probably thought I was needing those meds lol

I thought I was having a heart attack at one point 3 months into the IV antibiotics. Very dark thoughts too. Most scared I’ve ever been. Got off of them not long after.

Our doctors here think Herx is some guy we visit now and then...

I had what in retrospect was a Herxheimer reaction when first diagnosed and placed on minocycline. Irregular heart beats and suicidal thoughts. Later had all over body hives when given IM penicillin. An allergist determines I was not allergic to PCN and I took the shots IM for 2 years. I switched to orals again after my buttocks developed a sterile abscess. I finally got off all abx after HBOT. Many (10-12) years later I developed peripheral neuropathy and repeated HBOT with relief of the PN but finally had to stop working again 😞

Three years in and some symptoms are gone like tinnitis, joint pain, while others are worse- photo-sensitivity, fatigue, and neurological symptoms. Symptoms come and go and new stuff pops up and disappears. Trying new herbs is bound to stir things up so I stick with the tried and true in between flares.

I am currently going through Herx. I have Lyme for 30 yrs. This is my 3rd time getting Doxy. I have extreme fatigue, cognitive issues and anxiety. If I normally get a anxiety attack, I know exactly why. Now I’m just getting anxiety attacks for no reason. Last week, it was fatigue for 4 straight days. Felt good Sat and today feel crappy.

Yes, it can be worse than Lyme itself. I took l ornithine and Loratadine and it helped alot.

Symptoms always intensified after an antibiotic regimen. It was about one and a half weeks in on doxycycline, day 3 on Zithromax, and hours after biaxin. The severity related to the drug. Severe flu-like on doxy, severe, severe on Zithromax, and wanna die (and thought I was really going to) on the biaxin. I had a doc who diagnosed me clinically at first, who kept treating me for a couple of years before he moved away. Then no one. Got Zithromax for sinus issues off and on. Got the biaxin finally years later from LLMD. Because I could never get a positive CDC WB, nobody would say I’d have Lyme. (Did finally get a positive PCR under the LLMD). The herxheimer reaction gave me hope. It meant it was a real illness, because no other disease seemed to have that. So when people asked what I had, I told them an unknown etiology that was effected by antibiotics (cause I would then get better for a while). I did not have psych issues at those times, but did have severe headaches, which I normally never get.

Been years and it still ebbs and flows. Just ridiculous.

I was OCD and suicidal No previous psych issues prior to this

10 year old has had Lyme at least twice (multiple EM rashes both times, extreme sudden onset of fatigue and headache, high fever the first time)- due to rash she was treated both times (first time age 7 with only 2 weeks of amoxicillin, 2nd time age 8 with 3 weeks- argued with pediatrician both times that she needed more than that) but both times she recovered quickly and seemed fine. One year later, slow onset of more subtle symptoms- fatigue, widespread muscle pain, dizziness, shortness of breath, insomnia, nightmares, irritability, short term memory problems/concentration difficulties- I made so many excuses for months (too many activities, long school days, is your blood sugar low? gym class making you sore? what do you mean you don't remember?- you're just not listening!) until after 6 months it was bad enough and clear enough that I started to fear Leukemia and took her to our new family doc. New family doc looked at her/talked to her/took it seriously and ran lots of tests (including co-infections), only Lyme came back positive- 2/3 IgM, 7/10 IgG bands on Western blot (but with 2 prior episodes, is it a 3rd bite or a relapse? don't know cause tests can't distinguish). He said let's treat, this time doxycycline, continued for 8 weeks as she made slow improvement. But week 1 muscle pain was worse, in week 2 of doxy, she suddenly had severe cystitis- constant bladder pain, peeing 70 times/day, wetting pants/bed, horrible! Couldn't attend school, couldn't get off pot. Doc was puzzled, no sign of UTI, this is not a known side effect of doxy, sent us to see urologist at Children's Hospital of Pennsylvania- urologist said there was no usual explanation, speculated that it was a Herxheimer reaction to the bacteria releasing toxins as they are killed or immune system cytokines irritating the bladder and suggested that perhaps it would go away on its own. It lasted a week then disappeared overnight. All other symptoms slowly improved, by week 7 of doxy, she was back to normal, doc stopped after 8 weeks. This was one month ago- praying that it doesn't come back. She is like a different child now- funny, playful, energetic, has resumed her extracurricular activities. But I'm very concerned as to whether it will reactivate or how I will ever tell if she gets bit again unless she gets the rash again. She has positive serology and likely will for at least a few years, so there's no way to tell if she gets a new case. If she has a fever, is it Lyme? If she has a headache, is it Lyme? If she says she's tired, my mind goes right to Lyme. And so on. Constant worry. Constant tick checks. Wish we'd never left Texas and come to southeastern Pa 4 years ago. Yes- all this in 4 years.

A mi me dieron muchas CRISIS CURATIVAS fatales y muy muy dolorosas 😓me asuste de verdad 😳 pero ahora se que es una reacción 🙏🏻

Amanda Dunne this explains the Herxheimer

Totally what I battle esp without treatment.. it’s major in the blood brain barrier... I get the syphillis like symptoms and neuro

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2 weeks ago

Dr. Daniel Cameron

Some patients with severe long-term manifestation of Lyme disease have benefited from antibiotic treatment.

Patients with chronic symptoms after Lyme disease - Logigian1
Patients with Lyme encephalopathy - Logigian2
Patients with Post Treatment Lyme disease – Krupp3

Some of these patients have not benefits from antibiotic treatment.

Patients with persistent symptoms after Lyme disease – Klempner4

In one study, patients with Lyme encephalopathy improved on measures of fatigue but not cognitive function - Fallon5

I have treated these patients based on this evidence. I have known doctors who have not treated these patients based on the same evidence.

Do you know doctors who have been reluctant to treat chronic manifestations of Lyme disease? Please join the conversation with others 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. Chronic neurologic manifestations of Lyme disease. N Engl J Med. 1990;323(21):1438-1444.
2. Logigian EL, Kaplan RF, Steere AC. Successful treatment of Lyme encephalopathy with intravenous ceftriaxone. J Infect Dis. 1999;180(2):377-383.
3. Krupp LB, Hyman LG, Grimson R, et al. Study and treatment of post Lyme disease (STOP-LD): a randomized double masked clinical trial. Neurology. 2003;60(12):1923-1930.
4. Klempner MS, Hu LT, Evans J, et al. Two controlled trials of antibiotic treatment in patients with persistent symptoms and a history of Lyme disease. N Engl J Med. 2001;345(2):85-92.
5. Fallon BA, Keilp JG, Corbera KM, et al. A randomized, placebo-controlled trial of repeated IV antibiotic therapy for Lyme encephalopathy. Neurology. 2008;70(13):992-1003.
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Important info! Thank you for sharing.

2 weeks ago

Dr. Daniel Cameron

Conflicting advice for Lyme disease patients

Fallon and colleagues described the problems with conflicting advise for Lyme disease patients in 1992 in the journal Psychiatric Quarterly.1

“Such manifold uncertainties as to diagnosis, treatment and prognosis at this state in the history of Lyme disease put the patient in a difficult position. The patient may get conflicting advice from reputable sources and not know what to do.”1

“He may be told that his symptoms are not related to Lyme disease. He may be told there is no medical cause for his complaints and be referred to a psychiatrist.”

“Some patients, who have subsequently been effectively treated, have said that, prior to being diagnosed, they had feared they were just going crazy.”

I have patients in my practice who have received conflicting advice. I address these issues during my treatment.

Have you received conflicting advice about 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. Fallon BA, Nields JA, Burrascano JJ, Liegner K, DelBene D, Liebowitz MR. The neuropsychiatric manifestations of Lyme borreliosis. Psychiatr Q. 1992;63(1):95-117.
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1985. The first words out of my doc's mouth were, "I think you have Lyme disease!" Then, he treated me for 14 years for Ankylosing spondylitis. Those anti-inflammatories were my drug of choice and I would have done anything for them. My spine has never been involved.

Two weeks ago the Doctor who said He would continue to follow What my X MD had done by working with my LLMD refused. He refused to use igenex and told me if I tested positive or negative for either lyme or vd.He would give me antibiotics. What kind of medicine is this ? Then He ignored the fact that my lower spine is slowly being eaten up,and told me that pain had nothing to do with my blood sugar. I have prof it has everything to do with it,fight or flight. Yesterday I see I have been listed as type 2 dieabetic. ( sorry spelling) .001 over the suggested sugar level. I can not afford another LLMD who charges 1200 for the first visit. Oh well it is only life on this earth. Someday I will be called home . Not by my choosing but by God's.

Advice...not advise

So deeply grieved that 27 years later, the situation hasn’t changed. I still can’t comprehend how this situation has continued for so long.

Was diagnosed bipolar. Stayed in 4 in patient psych hospitals. Drugged on EVERY pharmaceutical cocktail EVER. 4 suicide attempts. Electric Convulsive Treatment. No combination of meds ever worked- even tried MAOIs. My last psychiatrist (the most brilliant) said after I had already been treated for a decade by others.....THIS is not bipolar. “SOMETHING ELSE IS AT WORK HERE”. Sadly, he passed away from Cancer before we ever discovered it was Lyme & Co.

How about Rocky Mountain Spotted Fever? I almost died in 2016 by the time they found it. I was retested a year later and was negative. I struggle now with various issues I never had before. I lived in Mississippi when I was diagnosed. Thankfully the NP knew what questions to ask as my symptoms were unrelated, or so I thought. I went to an internal medicine Dr who basically told me that it was impossible for me to have RMSF because it “is not something that happens in the South” I have moved to Texas now, and I got the same reaction from the Dr I have now. He’s basically treating symptoms. I still have other residual issues that I feel are from the RMSF. I have wanted to be tested for Lyme, but as I am told, “There’s no reason for it.” Could the RMSF cause co-infections like Lyme? I have come a long way, but I feel like I need more answers. Thank you 🙏

So sad! This shouldn't be! 😢

Horrific treatment by the medical community in NC. ER reported that my 14 yr old daugther was making up her sx of chronic headache, nausea and low grade temp....personality changes,. 2nd ER dr. reported that I, the mother had munchausen's by proxy when I voiced my concern about Lyme closed after 4 months.....Got the Medical Community Runaround.......Lyme disease denied by RI children hospital, a mass hospital diagnosed Chronic Daily Headaches (no etiology,,,,,,even though I expressed my concerns about Lyme...Diagnosed also with Oppositional Defiance Disorder.....All the while had low grade temp, developed a murmur, shin pain, foot pain bladder dysfuntion , gastroparesis, constant headeach, nausea abdominal discomfort, had to drop out of 9nth grade as well as 10th due to illness (had been an A student prior to infection). Had to sell home in NC to return back East to get proper medical help...I was a critical care nurse,,,,,,,so I have a good education and know when my child is sick.......It is a medical nightmare........then diagnosed with autism.......(not autistic ever). in treamtment with the best Lyme Doc i the east and in NYC for neuro.......gama IV treatment antibiotics 4 years......diagnosed when returned to RI by THE ONLY LYME DR> in RI....bartonella striations present on her lower back and started on treatment..........all psyche stuff resolved within 1-2 months but still remains physically ill after 4 yrs.

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