OT: Anyone here ever treated for Lyme Disease?

[upstater]

common sense would dictate, and from personal successful experience as well, an aggressive course of abx to treat a known bacterial infection. now, if the known infection triggers other malfunctions in the system, that's another kettle of fish. weakened immune systems cause all kinds of other malfunctions unrelated to the acute issue. I sincerely do not intend to be disrespectful. random thought, 13 year old? pre/post/currently experiencing puberty? an epic impact on the machine.

Definitely not puberty. You have to understand that a lot of people don't come to Lyme testing immediately. This is a huge part of our family's problem. I wish people were more manic about Lyme, because then we would have had a test done much sooner...

...Instead of having her suffer for 3 years as we cycled through Orthopedics (multiple), Physiatrists (multiple), Rheumatologists (multiple), Infectious Disease people, Mitochondrial Disease, in addition to our pediatrician, pain specialists, PTs, acupuncturists, chiropractors, etc., some of them top research doctors in their fields, all of whom threw up their hands flummoxed by her condition. The Lyme test came very late.

I can't speak from experience on the rest of the arguments made by Chronic Lyme people, but... their logic seems right to me. AFTER they took antibiotics, the symptoms persisted. And then, for some of the people with these chronic ailments, their condition improved after they found the right antibiotic to treat them. For some it took years. I found a recent article in the Atlantic of just such a person.

How would anyone account for that? The explanation is that the new treatment must have eradicated some co-infection. And that's the problem. If you're only going to do an initial (maybe limited) antibiotic treatment, are you addressing the possible co-infections? This is why some doctors persist while others give up.

I may be totally unfair to the medical community in saying this, but my experience with many doctors the last few years has made me suspicious of the entire community. We've seen the patient mills with our own eyes. If you don't want steroids or a cortisone shot, there's the door!!! That attitude sometimes permeates the offices of the doctors with the best reputation in an entire metropolitan region. Which doesn't even absolve the Lyme doctors who also charge an arm and a leg. One can't even imagine the fate of a poor person afflicted with this.

Nonetheless, someone will need to explain to me how/why people recover with longer-term antibiotic treatment. In a recent Atlantic article on Lyme, Dr. Alan Steere who has denied Chronic Lyme allowed that the patient's recovery over a long-term of antibiotic treatment was likely the eradication of an unknown coinfection.

 

[ClifSpliffy]

'I may be totally unfair to the medical community in saying this, but my experience with many doctors the last few years has made me suspicious of the entire community.'
yup. good attitude. docs are great for known acute conditions, but chronic ones? bunch of y2kers, sez me. chinese rhino horn medicine ain't got nuthin' on those quacks.
beware of the current prednisone mania.

 

[Rewster]

Cliff

You can always test your theories.
Take a walk in the woods. Get bit.
Develope symptoms and don't treat for 6 months.
Roll the dice brother!!!!
Come back and tells 7 months from now how it's all in our heads.

 

[ClifSpliffy]

Cliff

You can always test your theories.
Take a walk in the woods. Get bit.
Develope symptoms and don't treat for 6 months.
Roll the dice brother!!!!
Come back and tells 7 months from now how it's all in our heads.

been there, done that, have two bite scars 3/16 (upper thigh and shoulder) that I may or may not have cry'od or scalped some day. I never said 'it's all in ur head.' pain, like taste, is a highly personal experience. try again.

 

[Uconnfanatic]

the dr katz I referred to is a guy in orange(?), nh area, who treats a friend. the friend is some kind of lyme 'poster child' who gets paid for monthly withdrawals of blood by researchers due to some uniqueness. baby boomers have been yelling and screaming about ailments and infirmities, starting with 'epstein-barr' and 'chronic-fatigue syndrome' decades ago, coincidentally with that 'cocoon' flick (1985). I don't say this to diminish the reality of lyme, but until they change the rulebook that 'you're born, you live, and then you die,' I also don't diminish the reality of aging. sepsis is a leading cause of death. rest, reasonable nutrition, and frequent movement go a long way to being your best you. folks get cranky being told that an existence increasingly dominated by 2d screentime spent in climate controlled spaces has no precedence in our evolutionary history. peanut allergy? nonsense in dimension then (every child has it!), subsequently shown to be best avoided by early exposure to peanuts now. duh. celiac/gluten? equatorial cultures responding to growing exposure to northern climes 'hard' winter wheat (ie high gluten). life seemingly works best within the rule, not the exceptions. to that end, no way, no how do I jump on another grand conspiracy train regarding the CDC. it's what they do, for a long time, and populated by men and women of the same sincerity and integrity as you and me. now, a comment about the growing tsunami known as prednisone....hoo, boy.

Yup, Dr Ami Katz is a Lyme literate neurologist in the New Haven/Bridgeport area. I never said anything about a CDC conspiracy. I just said that the CDC & IDSA are putting out misinformation. The IDSA says right in their guidelines that there is no such thing as chronic Lyme & the a few weeks of antibiotics kills all Lyme bacteria. That's not even close to being accurate & there is plenty of science to show why. Spend 19 years as a Lyme patient advocate as I have & you become very familiar with the signs & symptoms not only of Lyme but also the coinfections. I can usually separate out & identify Lyme from Bartonella from Babesia & from other ailments simply from symptomology. Sure there are cases where one can't be sure it's Lyme but often it's as clear as can be & there is no doubt based on the weight of the evidence. I have helped thousands who were initially left hanging by uninformed PCPs. You might want to read a few books before forming too strong an opinion about this disease that is surrounded by a lot of myth & misinformation & is very misunderstood. I have seen this disease destroy so many lives, including those of doctors, lawyers and other professionals. Much of CFS, fibromyalgia, MS, Lupus and many other ailments labeled as autoimmune are Lyme & associated coinfections. Testing is poor & much the medical establishment is just plain ignorant of the disease. That leads to a lot of misdiagnosis & prolonged illness. The fatigue of Lyme has been measured down at Columbia Presbyterian in NYC as equal to congestive heart disease. Babesia, one of the coinfections, is a malaria like parasite that is causing concern in the Red Cross because it is tainting the blood supply. It is typically disabling but not deadly when contracted from a tick bite. However, it has proven deadly to immunocompromised patients who contract it through a blood transfusion. The Lyme epidemic is big & not exaggerated. The diseases are real & should not be taken lightly. The myriad of symptoms can be life-altering. Take it seriously.

 

[ClifSpliffy]

Yup, Dr Ami Katz is a Lyme literate neurologist in the New Haven/Bridgeport area. I never said anything about a CDC conspiracy. I just said that the CDC & IDSA are putting out misinformation. The IDSA says right in their guidelines that there is no such thing as chronic Lyme & the a few weeks of antibiotics kills all Lyme bacteria. That's not even close to being accurate & there is plenty of science to show why. Spend 19 years as a Lyme patient advocate as I have & you become very familiar with the signs & symptoms not only of Lyme but also the coinfections. I can usually separate out & identify Lyme from Bartonella from Babesia & from other ailments simply from symptomology. Sure there are cases where one can't be sure it's Lyme but often it's as clear as can be & there is no doubt based on the weight of the evidence. I have helped thousands who were initially left hanging by uninformed PCPs. You might want to read a few books before forming too strong an opinion about this disease that is surrounded by a lot of myth & misinformation & is very misunderstood. I have seen this disease destroy so many lives, including those of doctors, lawyers and other professionals. Much of CFS, fibromyalgia, MS, Lupus and many other ailments labeled as autoimmune are Lyme & associated coinfections. Testing is poor & much the medical establishment is just plain ignorant of the disease. That leads to a lot of misdiagnosis & prolonged illness. The fatigue of Lyme has been measured down at Columbia Presbyterian in NYC as equal to congestive heart disease. Babesia, one of the coinfections, is a malaria like parasite that is causing concern in the Red Cross because it is tainting the blood supply. It is typically disabling but not deadly when contracted from a tick bite. However, it has proven deadly to immunocompromised patients who contract it through a blood transfusion. The Lyme epidemic is big & not exaggerated. The diseases are real & should not be taken lightly. The myriad of symptoms can be life-altering. Take it seriously.

i'm not here to argue with you. you do good and important work. kudos. on the other hand, my'uns is a 'keep on going' clan. works for us. years ago, I posted a question at another forum sounding in 'are prostate and breast cancers wildly overdiagnosed?' crickets for weeks. then some oncology guy named chan from ucla wrote a long piece in agreement. (2015?2016?). fast forward to spring 2019. forbes?fortune? wrote a piece about the subject, and featured dr. chan and his pioneering work. good on him. smart dude. a healer.

 

[Uconnfanatic]

i'm not here to argue with you. you do good and important work. kudos. on the other hand, my'uns is a 'keep on going' clan. works for us. years ago, I posted a question at another forum sounding in 'are prostate and breast cancers wildly overdiagnosed?' crickets for weeks. then some oncology guy named chan from ucla wrote a long piece in agreement. (2015?2016?). fast forward to spring 2019. forbes?fortune? wrote a piece about the subject, and featured dr. chan and his pioneering work. good on him. smart dude. a healer.

Lyme disease comes in many shapes & sizes & many degrees of illness. In its more debilitating form, it will take down the strongest of people. My daughter was a straight A+ student & an athlete that competed at the highest levels in her age group year round. She played cello & piano. She had no interest in watching tv - too busy. I watched Lyme & Bartonella take her down. There were many nights in the first year I had to carry her from the couch to her bed upstairs because she didn't have the strength to navigate the stairs. She slept 18 hours a day for the first 6 months. I saw a very bright student lose the ability to read for 3 yrs. She never lost hope. Got a GED after missing almost all of high school, scored 1500/1600 on her SATs when her cognitive skills began to return in the 5th year. That open doors & she graduated from U of New Hampshire with a 4.0 in Economics & Chemistry only one year behind her regular class despite missing five yrs of (high) school. As an achiever she was used to willing herself through any challenge. I used to have to remind her to respect her illness because it pushes back & knocks you on your butt if you don't take it slow & easy. So yes being a fighter is important but this is a disease that can really push back. It's the scourge of our generation, for sure.

 

[upstater]

i'm not here to argue with you. you do good and important work. kudos. on the other hand, my'uns is a 'keep on going' clan. works for us. years ago, I posted a question at another forum sounding in 'are prostate and breast cancers wildly overdiagnosed?' crickets for weeks. then some oncology guy named chan from ucla wrote a long piece in agreement. (2015?2016?). fast forward to spring 2019. forbes?fortune? wrote a piece about the subject, and featured dr. chan and his pioneering work. good on him. smart dude. a healer.

There is not enough mania & hysteria about Lyme disease. I wish there were.

 

[upstater]

Insurance must cover treatment in Illinois.

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[Husky1]

i had a huge bullseye rash on back that the doctor said was lyme without any testing. Give me doxycycline
2 times a day for 3 weeks. after a week the rash began to shrink and was pretty much at the end of 3 weeks, i didn't have any side effects. Go huskies!!

 

[MTHusky]

If so, I'd appreciate hearing from those who were not treated early (or cured). I'd especially appreciate it if you'd be willing to discuss the testing process. Specifically what testing process did you use?

My main questions are about the Western Blot test, the one with the different bands of antibodies.

The CDC requires that you test reactive on 5 bands, but that criteria was created in 1994, about a decade after the Lyme testing process began. 25 years have passed now since the CDC made the guidelines, and a lot more is known, so the CDC is currently in the midst of revising guidelines and consulting with experts. In the meantime, for a medical community in my area that is not well versed in Lyme, the 5 band criteria are being used. One of my family tested for 3 bands, two of which are the strongest indicators of Lyme. So now I'm in the position of garnering information and next steps while the local community seems t be woefully behind the times.

Anyone ever test for less than 5 bands and yet received treatment for Lyme?

Upstater, I was successfully diagnosed about 30 years ago after going to see many MD's in California. Most just threw up their hands in frustration giving me heavy duty NSAIDS for the pain and Prozac for my depression what was caused by not knowing what the hell was going on with my body. I was a Banker at the time and it got so bad that I couldn't balance a check book let alone analyze a financial statement. Any little stressful situation would set me off on a wild rant. Finally, an MD listened to me that I used to live in CT (in fact we used to rent a cottage in Old Lyme) and ran tests for Lyme, which came back positive. Since I had it for a number of years prior to be diagnosed it turned out that little could be done to cure this pesty bug. Was forced out of the banking industry that nearly bankrupted me. All I can say is good luck and prayers. Wish I can remember what tests I had but I do know that I did have the Western Blot. If you are having trouble getting help on the east Coast, multiply that 10 x 30 yrs ago on the west coast when 99% of the MD's claimed there is no Lyme.

 

[Uconnfanatic]

Upstater, I was successfully diagnosed about 30 years ago after going to see many MD's in California. Most just threw up their hands in frustration giving me heavy duty NSAIDS for the pain and Prozac for my depression what was caused by not knowing what the hell was going on with my body. I was a Banker at the time and it got so bad that I couldn't balance a check book let alone analyze a financial statement. Any little stressful situation would set me off on a wild rant. Finally, an MD listened to me that I used to live in CT (in fact we used to rent a cottage in Old Lyme) and ran tests for Lyme, which came back positive. Since I had it for a number of years prior to be diagnosed it turned out that little could be done to cure this pesty bug. Was forced out of the banking industry that nearly bankrupted me. All I can say is good luck and prayers. Wish I can remember what tests I had but I do know that I did have the Western Blot. If you are having trouble getting help on the east Coast, multiply that 10 x 30 yrs ago on the west coast when 99% of the MD's claimed there is no Lyme.

Sorry you had such a hard time getting proper diagnosis & treatment. Some very good Lyme literate doctors in California now, especially in the Bay area. Northern California is highly endemic are for Lyme.

 

[Huskyforlife]

Had it when I was younger, most painful thing I've ever experienced, my leg was unusable, I distinctly remember walking with my friend at camp, and suddenly crumpling to the ground in pain, had to be carried into the doctor's office. Happy for those who got it diagnosed early.

 

[upstater]

Upstater, I was successfully diagnosed about 30 years ago after going to see many MD's in California. Most just threw up their hands in frustration giving me heavy duty NSAIDS for the pain and Prozac for my depression what was caused by not knowing what the hell was going on with my body. I was a Banker at the time and it got so bad that I couldn't balance a check book let alone analyze a financial statement. Any little stressful situation would set me off on a wild rant. Finally, an MD listened to me that I used to live in CT (in fact we used to rent a cottage in Old Lyme) and ran tests for Lyme, which came back positive. Since I had it for a number of years prior to be diagnosed it turned out that little could be done to cure this pesty bug. Was forced out of the banking industry that nearly bankrupted me. All I can say is good luck and prayers. Wish I can remember what tests I had but I do know that I did have the Western Blot. If you are having trouble getting help on the east Coast, multiply that 10 x 30 yrs ago on the west coast when 99% of the MD's claimed there is no Lyme.

I hope things got resolved for you eventually.

 

[UconnPT2007]

I see Dr Katz and saw another LLMD prior to him. It’ll be 2 years battling Lyme and Bartonella (I had about 6 months of remission but symptoms returned earlier this year). I got treated fairly rapidly since I was Lyme educated previously (my best friend had Lyme and Babesiosis a year prior) and I’m still in a dogfight. You need an LLMD, combination antibiotics, the right supplementation, and a lot of patience for the trial and error to find out what combination works for you and what you can tolerate. Symptoms take precedence over testing. It’s a nightmare at times - I don’t even bother discussing with other docs as most have a complete lack of knowledge on the subject. I work in the medical field myself and interact with doctors all the time. Had a well known infectious disease doctor tell me i couldn’t have Lyme or the co-infections after a round of antibiotics and that I either had cancer or an aneurysm. Morons. It’s also cost me boatloads of money but luckily I’ve maintained a high level of function for most of the battle. I often wonder how many people are walking around with psych or neuro diagnoses when it’s really Lyme or tick borne illnesses causing their symptoms. My symptoms are mostly psych plus fatigue - instead of being offered testing for Lyme by my neurologist when I first became sick I was offered an anti depressant which I promptly threw in the trash and got myself tested - which sure enough revealed Lyme, and later on discovered Bartonella through one of the better labs (Igenix, MDL) as Quest tests are worthless outside of the western blot. The 2 key takeaways are always check yourself for ticks after being outside (plus other preventative measures such as getting your yard sprayed for ticks) and get to an LLMD if you have any suspicion of Lyme. I do know folks who have successfully treated with herbs or by seeing a naturopath as well. There are some Lyme literate quack docs out there, but people who deny the existence or the depths of these tick borne illnesses are quacks too. Go Huskies!

 

[upstater]

I see Dr Katz and saw another LLMD prior to him. It’ll be 2 years battling Lyme and Bartonella (I had about 6 months of remission but symptoms returned earlier this year). I got treated fairly rapidly since I was Lyme educated previously (my best friend had Lyme and Babesiosis a year prior) and I’m still in a dogfight. You need an LLMD, combination antibiotics, the right supplementation, and a lot of patience for the trial and error to find out what combination works for you and what you can tolerate. Symptoms take precedence over testing. It’s a nightmare at times - I don’t even bother discussing with other docs as most have a complete lack of knowledge on the subject. I work in the medical field myself and interact with doctors all the time. Had a well known infectious disease doctor tell me i couldn’t have Lyme or the co-infections after a round of antibiotics and that I either had cancer or an aneurysm. Morons. It’s also cost me boatloads of money but luckily I’ve maintained a high level of function for most of the battle. I often wonder how many people are walking around with psych or neuro diagnoses when it’s really Lyme or tick borne illnesses causing their symptoms. My symptoms are mostly psych plus fatigue - instead of being offered testing for Lyme by my neurologist when I first became sick I was offered an anti depressant which I promptly threw in the trash and got myself tested - which sure enough revealed Lyme, and later on discovered Bartonella through one of the better labs (Igenix, MDL) as Quest tests are worthless outside of the western blot. The 2 key takeaways are always check yourself for ticks after being outside (plus other preventative measures such as getting your yard sprayed for ticks) and get to an LLMD if you have any suspicion of Lyme. I do know folks who have successfully treated with herbs or by seeing a naturopath as well. There are some Lyme literate quack docs out there, but people who deny the existence or the depths of these tick borne illnesses are quacks too. Go Huskies!

Thanks for this. Just wondering what you mean by this: the right supplementation,

 

[Dove]

Upstater, I was successfully diagnosed about 30 years ago after going to see many MD's in California. Most just threw up their hands in frustration giving me heavy duty NSAIDS for the pain and Prozac for my depression what was caused by not knowing what the hell was going on with my body. I was a Banker at the time and it got so bad that I couldn't balance a check book let alone analyze a financial statement. Any little stressful situation would set me off on a wild rant. Finally, an MD listened to me that I used to live in CT (in fact we used to rent a cottage in Old Lyme) and ran tests for Lyme, which came back positive. Since I had it for a number of years prior to be diagnosed it turned out that little could be done to cure this pesty bug. Was forced out of the banking industry that nearly bankrupted me. All I can say is good luck and prayers. Wish I can remember what tests I had but I do know that I did have the Western Blot. If you are having trouble getting help on the east Coast, multiply that 10 x 30 yrs ago on the west coast when 99% of the MD's claimed there is no Lyme.

Wow. What a nightmare, MT.

 

[uconnfan68]

Wow. What a nightmare, MT.

Best wishes going forward MT.

 

[MTHusky]

Wow. What a nightmare, MT.

Yes it was and to a certain degree still is. To this day I still have to stay away from real stressful suitations or I can lose it.

 

[MTHusky]

Best wishes going forward MT.

Thanks, appreciate that.

 

[UconnPT2007]

Thanks for this. Just wondering what you mean by this: the right supplementation,

Most LLMDs will tell you detoxing is almost as important as the treatment itself. These little buggers release toxins as they die off which can make you feel worse (known as the jarisch-herxheimer effect, or herxing as it’s commonly referred to). You also want to make sure your immune system is properly functioning (long-term infection can throw everything out of whack) and inflammation is being kept in check.

Magnesium is one just about every LLMD will recommend. I also take circumin, NAC, vitamin D, probiotics (which are a must if you’re taking antibiotics), omega 3 (fish oil), and a B vitamin complex. It’s also important to exercise if you can, or find a way to sweat (infrared saunas).

 

[upstater]

Most LLMDs will tell you detoxing is almost as important as the treatment itself. These little buggers release toxins as they die off which can make you feel worse (known as the jarisch-herxheimer effect, or herxing as it’s commonly referred to). You also want to make sure your immune system is properly functioning (long-term infection can throw everything out of whack) and inflammation is being kept in check.

Magnesium is one just about every LLMD will recommend. I also take circumin, NAC, vitamin D, probiotics (which are a must if you’re taking antibiotics), omega 3 (fish oil), and a B vitamin complex. It’s also important to exercise if you can, or find a way to sweat (infrared saunas).

Thanks

 

[Dove]

Yes it was and to a certain degree still is. To this day I still have to stay away from real stressful suitations or I can lose it.

Watching the last 2 years of Ollie-coached Huskies must have been really bad.

 

[MTHusky]

Watching the last 2 years of Ollie-coached Huskies must have been really bad.

Hell yes!!

 

[Waquoit]

This has been an eye-opening thread for me. I guess I thought that Lyme was pretty much figured out and didn't realize what a mess the situation is.