I am skeptical of the llmd's. I screened positive on the ELISA but was neg. for Western Blot done at Mayo. Of course I was told by Lyme board that I didn't do the "right" test from Ingenx. Bottom line, long-term antibiotics can cause real damage to your gut, your immune system, some are even neurotoxic. Add that to people literally bankrupting themselves for treatment...it doesn't make sense to me. I have an idiopathic neuropathy, & would LOVE to find an answer. Don't get me wrong--if I knew I had a tick bite, I would be more intrigued. But practically everyone could say they have either lived in or visited an area with the potential for a tick bite. Not enough proof for me.

I go hunting in the woods all the time lol

Me and ticks go way back...maybe I have Lyme disease.

same sceptism as you, i basically went to a forum where theres people who claim they had lyme disease, these are the chronic lyme disease believer i was talking about, as soon as i started questioning the validity of chronic lyme, i basically became a pariah, of trash talking and extreme confrontational people, i basically asked them to prove that thier assumptions with scientific research, they said "tests are not accurate, only an llmd can diagnose by symptoms alone", which they couldnt even explain, and then they started become incredibly defensive, and said i was a liar spreading misinformation.
The reasons i dont believe in chronic lyme, thats why there is the term disseminated lyme disease:
several red flags.
-LLMD/ND do not accept insurance, because they would have to follow some kind of ethical guideline or policy with the insurance, 2ndly, they can charge more per appointment than billing any kind of insurance. third they try to push you into some kind of herbal/antibiotic regiment which does more harm than good. and many so-called llmd who wrote books, believe that if your not suffering, the treatment is not working.
-The blatant prescription abuse by the doctors, of antibiotics is very concerning as, antibiotic breed abx resistant bacteria, adding to the already global issue, antibiotics destroy your own natural "micrbiome" allowing candida to cause infection.
-abx has many side effects, to human body, IV antibiotics used in this manner have cause much more injuries.
- then here comes the lab test that the llmd will only do, igenex, quest,,etc. Very expensive tests, furthermore its not really verifiable as these labs do not let any intense investigation, to see if thier test are valid.
-Now there are actually laws in some states protecting Lyme "specialists" from persecution by law, or punishment by the Medical doctors association of america.
-lasty, is no modern doctor, will diagnose based on your symptoms alone, if its as complex as LYME disease, something like skin infections are clinical.
-see a doc, ordering igenex test, going on reccommended regiments of antibiotics and herbs, can cost in thousands per month, i was wondered how they are even paying for it.
even some forums that allow posting your health related questions, give protection to chronic lyme believers.
- The most unusual thing is that LLMD, or specialist do not want to be publically known(red flag), even some forums give a ultimate rule "no llmd name or address be given publically".
if lyme is disseminated as in some people, antibiotics are almost useless against this stage of the disease, but you see theres claim that continued use of antibiotics will "force the bacteria" out.
i think these people should take a course in microbiology.
hopefully the OP will not get sicker,and make his PN worst with the questionable treatments.
Overall, chronic lyme believer, based thier ideas on pseudoscience, and the experiments or research they have done on lyme, saying that certain herbs/abx can kill certain stages of the bacteria, there is no peer review, and these experiments cannot replicated by official labs or instituition. The only place i find these "Evidence" is on herb treatment related websites, no other sites like ncbi, or some kind of university doing this.

The majority of people who are chronic lyme believers, based on several forums, indicated that they got even sicker on the abx, whats more alarming is that they believe thier children have lyme, and force them on these regiments herbs/abx, which is toxic for children to begin.

I agree with you.
Everything you say here sums up my opinion as well. I feel that many of these "lyme people" are taken advantage of easily because of their desperation to be out of pain and to think that they are going to get better.
However, what about the people that do?

I walked into the llmd's office with my opinion already formed that he was obviously going to think I have lyme and want me as a patient (customer). I still have the same attitude, but don't think he was trying to sell me on anything. I think he is a pretty smart guy who genuinely believes that lyme and coinfections cause almost everything.

The problem is this: mainstream medicine cannot figure out what has assaulted an attack on my body. Was it viral? Bacterial? Environmental?
They can tell me my nervous system is damaged/being damaged probably due to my antibodies. What set off this strange trigger? They don't know. I don't have neurological problems in my family, so its probably not genetic.
As a holistic health practitioner, I am mostly opposed to medication of any sort unless absolutely necessary. I don't even like to take an ibuprofen for a headache.
For me...to even consider this, I must be crazy.

I have to consider it though. I live in a huge tick zone. I have removed several ticks off of myself in the past 12 years. I have a cat who brings in dead rabbits, mice, and birds. I pull ticks off of her all summer and fall. I have found them on the floor walking around full of cat blood. I have been bitten by my cat (no rash though, indicating bartonella aka cat scratch fever)
I have also had several spider bites over the years that were pretty nasty.
I have never had the bullseye, or a fever after any bite, and being a nature person -never worried.

My choices are these:
1. do nothing and keep hoping
2. go with the sjogren's treatment of plaquenil
3. try antibiotics for a while and see what happens.

The only reasons I consider the third option is because of the research being done that links autoimmunity to lyme.
The other reason is that my neurological symptoms are so clinical for lyme even according to mainstream lists.

http://www.ninds.nih.gov/disorders/lyme/lyme.htm

There are many doctors who believe that rheumatism is due to bacteria (not just llmd's)

http://columbia-lyme.org/research/scientific.html

I am terribly upset to mess with my own body, something is clearly messing with it anyway and I am trying to figure out what to do.
If it were up to the neurologists, I would be on Lyrica, mestinon, tramdol, baclofen, and plaquenil right now. I prefer to suffer and take occasional pain relief than pollute myself, but how long can I do it? Sometimes the damage to a persons mind and spirit from pain and fear is worse than getting relief....rambling-another topic.

I think a lifetime of someone taking the above mentioned drugs since 38 years of age would be worse than a trial of a few months of antibiotics (as monstrous as I know they are).

Anyway, it isn't easy, so I'm not jumping to anything. I'm going to see what the next blood work looks like while I ponder.

No that did not include labs. Guess this guy is high in demand and he can get away with it. People in Ct speak highly of him. My aunt feels that LLMD's helped her son when no one else could when he started losing motor skills. She went to him herself when she suspected lyme after being fatigued for a year and having insomnia and she tested through igenix and she said his treatment worked. I always felt that she was going through menopause and thats what it really was, but I thought my own issue was hormonal and was way wrong so how the heck can I think I can know what she was going through?

Giving it a shot is what I might do. I can't say, "What do I have to loose?" I will be losing whatever balance of gut flora and some good bacterial friends, but if I decide to go for it I have access to professional grade probiotics and supplements through my practice so I will be as careful as I can be.

there was a poster who was here for a long time who did this treatment with anti biotics eventually and was greatly helped by it. i dont know if she was totally cured but at the least was much better off. Her name was lizajane. you can look up her old posts.

I think some people are so desperate, to see what is causing thier illness they will jump online and search online, and of course lyme,MS,parkinson is the top searches. Chronic Lyme believers will automatically assume everything is related to lyme, after they go through antibiotics course, but the llmd don't stop there. I do here that llmd , says they pay more attention to your problem, because you paid like 400-1200$ on the first visit. They have to keep you coming back, otherwise a one time payment/treatment will push them out of business really quick, they will try to say you have this or that on your blood test, that are unrelated to your supposed lyme disease, At least some of these doctors may recommend you see a specialist (rheumatologist, neurologist). I looked on yelp on LLMD/ND in my area, apparently one of them is part of the llad(a questionable organization), has some reviews that immediately confirms my suspicions: he constantly tries to push/advertise products onto you, or he is unusually resistant to any "outside doctor" consultations. Mentally, people feel better when they get some assurance from their doctor, because mental health is just as important to your overall health. I think its a good idea to go on abx to see if it will do anything, if it doesnt it probably is not going to help to continue. i have a feeling that the controversy behind chronic lyme, has become somewhat of a cult(chronic lyme believers and thier llmd).
even the doctor who discovered lyme disease, was threatened with violence for things just like this. Hopefully you can explore more options, as well. sogrens is not the only autoimmune out there that can cause PN.
lab tests outside of the llmd, will not be recognized as an official lab test. Furthermore, most of the chronic lyme patients, dont even believe in thier accuracy of thier test anyway, so it was pretty much of waste money. I think most llmd will only see if you have an IGENEX test, and will only reccommend something like igenex.

the second link is problematic, because its basically only testimonials, where is thier experiments, or tests?methods results, use of controls. when your dealing with scientific research, you must have some kind of experimentation done, such as scientific papers being published on scientific journal it seems like they were funded to say that. i think lyme and neuro issue has already been established. autoimmunity is slightly trickier,because we dont even know how most autoimmnity works, to begin with.

If Quest does not get your sample in time to discover the bacteria, your local health department may be able to do a better job. (For free) They can usually do the testing within hours of bringing it to the lab. (Former bacteriologist/med tech; also, let them know what's going on with an attached note. We loved a challenge!)


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quest has about as much reputation as igenex, I went to look about quest labs, they were involved in scamming medicare and medi-cal out of alot of money, especially the patients, it was due to the accuracy of thier testing equipments.

i have to use quest due to my insurance and quite a few times i had to redo tests because the numbers were way off.