Lyme Disease?
- Thread starter Mikey Cliff
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Member- Aug 21, 2014
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Yes, I know two people with neurological lyme disease; one of them has pretty constant T as a result, the other does not but has had some amount of T... and other more severe sensory issues.
In both cases, the T is pretty far down their list of complaints, because lyme is a horrible disease that can mess up your whole body pretty badly.
In both cases, the T is pretty far down their list of complaints, because lyme is a horrible disease that can mess up your whole body pretty badly.
Thanks, I haven't been diagnosed, however I'm seeing a neurologist next week. I wish T was a low complaint for me. Not saying I want worse things...
- Aug 21, 2014
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I hope everything goes well for you; I should also point out that I've known several people who had Lyme and did not have bad, long-term problems as a result. Catching it early helps a lot, but some people respond to the antibiotics, and other people don't as well. The person I know who's had the worst go with it, is doing MUCH better now, but it did take her many years to get there.
Do you have other reasons besides the tinnitus to suspect lyme?
Sort of a wavy vision, and muscle spasms when I over work my body. Spasms are not that bad. Just curious as I did get a bug bite 5 years ago then soon after some eustachian tube and vertigo problems. Also, I got bad eye floaters. I don't have any real pain though. Just trying to rule out what I can or find a cause I guess.
Had Lyme Disease when I was 37 years old and ended-up needing a pacemaker. I didn't get "T" until I was in my 60's
Didnt you go for the am 101 injections and posted that it made you worse? Then would you not have been blood tested etc...at the clinic and would any thing like lyme disease not have shown up. If it is lyme disease then posting that the am 101 made it worse may be rather misleading in the overall vote? Not saying anything definitive but just wondering?.....
- Aug 21, 2014
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I have most of these symptoms; too but in my case the onset was after a viral illness.
If you had tinnitus due to neurological lyme disease, tinnitus would be the least of your pains!!
trust me.... it's a horrible thing that I wouldn't wish on my worst enemy!! from headaches, to being unable to move, to sometimes losing eye sight, to vertigo and falling constantly.... lyme is no joke!!! it makes tinnitus look like sex with your favorite movie star!
trust me.... it's a horrible thing that I wouldn't wish on my worst enemy!! from headaches, to being unable to move, to sometimes losing eye sight, to vertigo and falling constantly.... lyme is no joke!!! it makes tinnitus look like sex with your favorite movie star!
- Aug 21, 2014
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There are two blood tests but they are both unreliable, and getting a correct diagnosis can be very hard. Conversely, there are "lyme specialists" who will diagnose just about anything as lyme.
In the case of my close relative, an Elisa did eventually show a positive result -- after a half-dozen negatives over the years.
As far as bacterial infections go, Lyme can create severe symptoms with a very low total count of organisms in your body. This makes it a challenge to detect.
A relative of a my friend had lyme disease and sadly it resulted in him having his leg amputated below the knee. Actually he had been in so much pain due to the leg that he was far happier once it had been taken off.
He also ended up going on dialysis and is waiting for a transplant but I am not sure if that was anything to do with the lyme. Reason is that he was blown up during the Gulf War as an SAS guy in 1991 which messed him up pretty bad and also blinded.
Took a little while but not too long before he was checked and found to have lyme.
Whoa Mikey just hang on there please for a minute.
Please look at what I wrote above and then please look at your answer.
The voting at the top of the am 101 thread is publicly available information.
So maybe you dont know this. Let me explain how it works. If one goes to the vote and then clicks on to the show vote results.....then go to for example the one that says no change then one will see that James White voted that no change and that there was only one vote on that. Same with all the other categories. So for moderately improved or greatly improved or moderately worse etc etc all the names of the people who voted show up publicly and who and how many voted on each category. Public information.
I fully expect you didnt know that before so please go the vote on top of the am 101 participants page and please check it. What you do is click on the number of votes bit to see who voted. So for example if there is one vote on the no change category and you click on the one vote, then you will see that James White comes up as the single voter for that category.
I only was asking a question about something that is freely in the public domain......ie if you were wondering if you had lyme disease? Well what I was trying to say is that when you did the am 101 trials, as far as I know they take thorough blood tests to know whether the participant is healthy or not to take part......so doing the am 101 trials you should have had the blood tests and I would have thought that any illness or virus or any other thing that would affect you from having good health would have been shown up in the blood tests at the am 101 trials. That is all I was trying to say. I guess it is my fault as maybe I did not write it clearly in the post and for that I am really sorry.
However Mikey please be assured that I would never discuss anything that is held in private conversation with anyone except the person with whom I am holding the private conversation.
Nor did I nor would I even ever mention that I had had private conversations with someone or not.....I simply would never do this.......my word is by bond and if i promise to keep something confidential then confidential is how it will remain certainly from my side and I never break a promise - ever!
You have said publicly that we have had private conversation but it was not I who said this publicly.
I was only joining in the discussion on lyme disease on the public forum and still do wonder how something like that could not have been noticed in the thorough blood tests carried out at the trial clinic...therefore what I was trying to say was that I doubt that you have it but if you do have that then it sways the poll on the am 101 a bit......trouble with the poll is that many use it to help decide whether to go ahead or not in the trials. Maybe very well the wrong thing to do but utterly human as who else do we have to ask other than the genuine participants themselves...?
I would have messaged you privately with this answer but felt compelled to answer publicly as you have said publicly that i have breached the netiquette rules which I have not done and would never do.
Okay hope this clarifies and I have not taken offence and I really hope you havent either,
By the way Mikey I would have preferred it if you had messaged me privately with this rather than discussing on here that we have messaged each other or not........i keep private messaging very private.......and now you havent......I understand you felt angry but it was only cos you misunderstood my post and you didnt koow that the public vote on am 101 shows the names of the people voting......
Maybe that should have been made clear actually but I dont devise these votes and have no idea how to - I just read it is all..........hope this is all clarified now Mikey.....
He also ended up going on dialysis and is waiting for a transplant but I am not sure if that was anything to do with the lyme. Reason is that he was blown up during the Gulf War as an SAS guy in 1991 which messed him up pretty bad and also blinded.
Took a little while but not too long before he was checked and found to have lyme.
Whoa Mikey just hang on there please for a minute.
Please look at what I wrote above and then please look at your answer.
The voting at the top of the am 101 thread is publicly available information.
So maybe you dont know this. Let me explain how it works. If one goes to the vote and then clicks on to the show vote results.....then go to for example the one that says no change then one will see that James White voted that no change and that there was only one vote on that. Same with all the other categories. So for moderately improved or greatly improved or moderately worse etc etc all the names of the people who voted show up publicly and who and how many voted on each category. Public information.
I fully expect you didnt know that before so please go the vote on top of the am 101 participants page and please check it. What you do is click on the number of votes bit to see who voted. So for example if there is one vote on the no change category and you click on the one vote, then you will see that James White comes up as the single voter for that category.
I only was asking a question about something that is freely in the public domain......ie if you were wondering if you had lyme disease? Well what I was trying to say is that when you did the am 101 trials, as far as I know they take thorough blood tests to know whether the participant is healthy or not to take part......so doing the am 101 trials you should have had the blood tests and I would have thought that any illness or virus or any other thing that would affect you from having good health would have been shown up in the blood tests at the am 101 trials. That is all I was trying to say. I guess it is my fault as maybe I did not write it clearly in the post and for that I am really sorry.
However Mikey please be assured that I would never discuss anything that is held in private conversation with anyone except the person with whom I am holding the private conversation.
Nor did I nor would I even ever mention that I had had private conversations with someone or not.....I simply would never do this.......my word is by bond and if i promise to keep something confidential then confidential is how it will remain certainly from my side and I never break a promise - ever!
You have said publicly that we have had private conversation but it was not I who said this publicly.
I was only joining in the discussion on lyme disease on the public forum and still do wonder how something like that could not have been noticed in the thorough blood tests carried out at the trial clinic...therefore what I was trying to say was that I doubt that you have it but if you do have that then it sways the poll on the am 101 a bit......trouble with the poll is that many use it to help decide whether to go ahead or not in the trials. Maybe very well the wrong thing to do but utterly human as who else do we have to ask other than the genuine participants themselves...?
I would have messaged you privately with this answer but felt compelled to answer publicly as you have said publicly that i have breached the netiquette rules which I have not done and would never do.
Okay hope this clarifies and I have not taken offence and I really hope you havent either,
By the way Mikey I would have preferred it if you had messaged me privately with this rather than discussing on here that we have messaged each other or not........i keep private messaging very private.......and now you havent......I understand you felt angry but it was only cos you misunderstood my post and you didnt koow that the public vote on am 101 shows the names of the people voting......
Maybe that should have been made clear actually but I dont devise these votes and have no idea how to - I just read it is all..........hope this is all clarified now Mikey.....
@amandine I apologize, as I had no idea that the polls were public. I swore the first poll was private, I guess that's why a new one was created. I also don't know what the blood was taken for. Seeing that my blood was taken more than once, I assume that they were looking for any changes. I understand that the polls have an affect on peoples decision making, and is exactly why I would never change my answer. I wish I had read Dr. Naglers thought before I took part in the trial. I believe it was along the lines of, if you are wanting to help science then take part in the trial, if you are looking for I cure I wouldn't suggest it. I'm not quoting him on that but if I'm wrong you can correct me. I personally believe that am-101 could be potentially dangerous and make symptoms worse. When the doctor perforated my left ear a new tone appeared. As for the original point of this thread, I was curious about Lyme disease as I know very little and have started more reading on the subject which can be pretty ambiguous itself. So once again I apologize for saying you breached netiquette as your post looked as you were accusing me of distorting data that is of an opinionated poll. I am suffering like many others here as I have lost my career, as well as, my ability to enjoy all of my hobby's and life in general. Maybe it would have been better if you had reached out to me privately before making potential accusations publicly about me giving misleading information. Even if I do have Lyme disease, I would imagine that it has little to do with a worsening through perforation.
- Aug 21, 2014
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a lyme blood test is specific and adds expense, so it's probably not done as a matter of routine screening during unrelated drug trials.
Mikey I wasnt accusing you of anything at all......I was just saying that the polls get a bit distorted.....mikey i think i need to pm you privately on this ok?
This is taking over the thread and it shouldnt and is turning into one of those soap opera type things LOL that i am sure neither of us wants....far too negative and dramatic......
So apologies for not pm u before
I just was reacting to public info and public posts as i said before
So sorry to hear that you have worsening and extra damage due to the injection.
Has this improved since then or do you still suffer this worsening?
And sorry to hear that you may be having symptoms of possible lyme disease.
let us agree here on this public forum please that we both made mistakes........i should have pm'd u and u should have pm'd me. And i shall pm you re all this and take it off this thread........ok?
Depends where the tick came from. For example, if it came off a deer then the deer tick can be a carrier and can also make the dog very sick indeed.
As to you getting Lyme, well lets just say that it never happened to me and I have had dogs all my life.
An important thing is that you should get the ticks off the dog as quick as possible and not wait for it to drop off engorged.
Doesnt always make the dog sick so dont worry but just can happen sometimes.
Guess the thing is to try to prevent rather than cure so if it means using chemicals well then that is one choice or look at natural products to help prevent the tick attaching.
I know that raw garlic (although written sometimes is poisonous for dogs but never found that to be true myself) added to their food can make the blood sour and unattractive to the tick.
Bit like for humans skin that crushed lemon leaves on the skin will deter house flies from landing or lemon juice on the skin will deter mosquitoes. Difference between natural products and chemicals is mainly that the chemicals last longer term while natural products need to be continually re applied or given in food as in the case of raw garlic for dogs.
Maybe have a Google and look for natural products or use the chemicals which in turn are bad for the dog......guess it is a matter of weighing the pros to the cons.....
Thank you @amandine yes but she has short hair so short! I was surprised to see one so big and for me to miss it, I always check her body. She has some fleas but I always bathe her with a chemical to kill those off. There is no deers around or squirrels :/ just other dogs in the street that sometimes get near her when i walk her, so i figure she caught it from them. The tick was grey, it was really engorged. You would think that if a tick bites you and is able to get to that size that it would have to be attached for sometime and for one to notice/feel it.
Yes normally that would be a sign that it has been attached for some time.
Maybe it was so tiny that you missed it.....dont know......i always like you rub my hands along her body (my wee one) and check too.
Can feel the tick even if i dont see it (short hair too).....
She could have caught it off the grass or it brushed onto your leg and then on to her. It is spring time now and therefore the time when they can be at their most prolific........same as fleas.....
point is that at this time of the year they are just sitting anywhere......on the road dropped off another dog's hair as was not attached yet......and then waiting for another juicy dog or human to walk past to jump on......it is that easy to pick up a tick at this time of the year........
Dont worry about it.........please..........it is just a tick....hate them yuck but they exist so what to do?..........what about using advantix on her.......it is chemical but it sure stops the ticks and the fleas for at least a couple of months......it says on the packet for one month but in my experience it is good for at least two.......
- Aug 21, 2014
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deer ticks are TINY, especially when they are immature.
I've had much larger ticks in me and not noticed until they were already fully engorged (at which point you're boned, if they have lyme).
I've had much larger ticks in me and not noticed until they were already fully engorged (at which point you're boned, if they have lyme).
@amandine Yes I have head of that chemical for fleas and ticks and you are so right spring summer season is horrible for dogs. My girl most likely picked it up from the grassy area from the dog park 
(sigh) I hope none of those dogs spend time in the country where there may be deer. (sigh)
@linearb do you have lyme?
Would the most obvious symptom for Lyme be a rash? I read its not always necessary to have rash to be diagnosed with Lyme. Also that its really hard to even diagnose this disease
I would guess swollen lymph nodes would make sense, indication infection/bacteria in the body. I don't have any but my nephew who lives with me does a tiny one of the side back part of his neck. He complains of nothing though. Just has some minor speech delay. But I' still worried. I read even the ELISE test can be inaccurate.
(sigh) I hope none of those dogs spend time in the country where there may be deer. (sigh)@linearb do you have lyme?
Would the most obvious symptom for Lyme be a rash? I read its not always necessary to have rash to be diagnosed with Lyme. Also that its really hard to even diagnose this disease
I would guess swollen lymph nodes would make sense, indication infection/bacteria in the body. I don't have any but my nephew who lives with me does a tiny one of the side back part of his neck. He complains of nothing though. Just has some minor speech delay. But I' still worried. I read even the ELISE test can be inaccurate.
- Aug 21, 2014
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[QUOTE="Fiore, post: 99691, member: 7874]
Would the most obvious symptom for Lyme be a rash? I read its not always necessary to have rash to be diagnosed with Lyme. Also that its really hard to even diagnose this disease
I would guess swollen lymph nodes would make sense, indication infection/bacteria in the body. I don't have any but my nephew who lives with me does a tiny one of the side back part of his neck. He complains of nothing though. Just has some minor speech delay. But I' still worried. I read even the ELISE test can be inaccurate.[/QUOTE]
I had Lyme Disease and I had the classic bulls eye rash where the tick was imbedded. It was a perfect red circle with the tick in the center and then a clear area and another perfect red line circle outside of the first.
http://www.cdc.gov/lyme/signs_symptoms/
Would the most obvious symptom for Lyme be a rash? I read its not always necessary to have rash to be diagnosed with Lyme. Also that its really hard to even diagnose this disease
I would guess swollen lymph nodes would make sense, indication infection/bacteria in the body. I don't have any but my nephew who lives with me does a tiny one of the side back part of his neck. He complains of nothing though. Just has some minor speech delay. But I' still worried. I read even the ELISE test can be inaccurate.[/QUOTE]
I had Lyme Disease and I had the classic bulls eye rash where the tick was imbedded. It was a perfect red circle with the tick in the center and then a clear area and another perfect red line circle outside of the first.
http://www.cdc.gov/lyme/signs_symptoms/
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