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Do Not Rule Out Lyme Without Having Been Tested


Annaliese

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Two of my Australian friends with dysautonomia have finally, after many many years, discovered they have Lyme disease (through blood testing). Was it a doctor who suggested they have the testing? No! They were the ones who pushed for it. I have been told by a specialist that "it does not matter why you have POTS". What utter rubbish! Im currently trying to arrange for Lyme testing for myself. I just thought I'd post this to remind people who are outside the states that Lyme is pretty much all around the world, not just the USA. I have seen 15 specialists and not one has suggested Lyme testing! Thank you to the makers of this website btw. It is fantastic to have a list of potential causes of dysautonomia.

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Keep us posted on what you find out. It will be interesting to see if you have a connection with this. What are they doing for their Lyme disease - and is it helping?

Issie

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Hi Issie

Theyve just found out so theyre not sure about treatment yet. One option is to go to europe for treatment. Ive requested a test kit and am waiting for it. Hopefully i will know if i have lyme in under a month.

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Just keep in mind that this diagnosis (of long-term Lyme) and how to treat it has become quite controversial. Research is still underway (see links below).

http://medical.wesrch.com/pdf_file/LYY_1206297464/lyme_wars.pdf

http://cid.oxfordjournals.org/content/45/2/149

I live in a Lyme disease hotspot (MD's eastern shore) and have many friends and even more acquaintences who have had Lyme and been treated for it. A very few have had long-term effects. These have been memory/cognition problems and now one recently has heart block, which her doctor (who is also my specialist) says may have been exacerbated, but not caused by, Lyme infection.

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I had a natural doctor tell me that if properly tested about 70% of people come back positive for lyme. There are more insects than just ticks that carry it, and there is a questionable sexual transmission as well. I definitely wouldnt rule it out if you think there is a possibility (if you have been bit by a tick or a black fly you should definitely be checked).

I actually had the EM rash twice in my life, so I am pretty certain I have lyme in my body-- however, I also know that my dysautonomia did not stem from that, but unfortunately is genetic (sister has it too). I can say that since the first time I was bit I have had horrible vertigo and headaches, which I did not seem to experience before. Other than that, the tachycardia is just bad genes :(.

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I have a friend that had/has Lyme disease. They didn't catch it until it was well progressed and even though she doesn't have autonomic dysfunction from it - she is tired all the time. More of a CFS type symptom for her. She has to take a nap every day - because of her fatigue. Most of what I've heard in regard to Lyme is the fatigue. Will be interesting to hear what those with Lyme and POTS have experienced with this. If it triggered some sort of autoimmune reaction or if it's just a peripherial finding.

Issie

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Thanks for those links MomtoGuiliana. To everyone... I am wondering whether EDS people show more dysautonomia type sysmtoms than the average person with lyme and if they do is it due to adrenergic supersensitivities?. Ie if the autonomic neurons in an adrenergic supersitive person are affected perhaps that leads to the crazy seesawing of the servomechanisms that control autonomic function more so than in a person with normal adrenergic sensitivity......what do you think?

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Rissy- is your dr saying 70% of the worlds population has lyme or 70% of people with lyme symptoms who get tested turn out o have lyme? Or is he saying that the test brings back a high percentage of false positive results?

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Thanks for those links MomtoGuiliana. To everyone... I am wondering whether EDS people show more dysautonomia type sysmtoms than the average person with lyme and if they do is it due to adrenergic supersensitivities?. Ie if the autonomic neurons in an adrenergic supersitive person are affected perhaps that leads to the crazy seesawing of the servomechanisms that control autonomic function more so than in a person with normal adrenergic sensitivity......what do you think?

Most of us with HyperPOTS and EDS fall into a lower percentage of the subsets of all POTS people. There are less of us. And to make it even more rare - add MCAS into that mix. According to an interview I saw with Dr. Grubb - that would put those of us with all three at about 1% of ALL pots people. I'm not sure if there would be a way however to determine the level of sensitivities that we have as compared to others. For each person dealing with this and for others dealing with other chronic illness - it is something that affects their world and each person would tell you that it's enough to affect the quality of their life. Just varying degrees of cause and effect. I think the tacky that all POTS people have brings on a certain amount of sensitivity to the dysfunction. So, my having high NE levels and hourly surges (when I'm really bad) - is very difficult to me - but, you learn to deal with it and - if there isn't anything that can be done for it - it somewhat becomes your normal. Sad, but true. But, it could very possibly be that those of us in this catagory - if there were a way to measure the effect and reaction - could possibly be affected more so from a hyper standpoint. But, thankfully, many of us with this type of reaction are not fainters. I always count myself as fortunate - because, I can always look around me and realize there is someone else who is worse off than me and I have to be thankful for what is postive about my situation and my life. And hope that tomorrow will bring to light an answer or a reason for this crazy dysfunctional body of mine and at least some of it will get better. If not, let me find my purple band-aid and be able to cope and enjoy what life I do have left to the very best of my ability to LIVE it and ENJOY it.

Issie

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Issie, most of my friends with Lyme have autonomic dysfunction as well. For a while when Lyme was a big question for me I was on the Lyme boards and quite a few people on there also had POTS or other autonomic disfunction.

I agree that Lyme needs to be considered. I also think that if you consider Lyme you need to do your research and have a good Lyme Literate Doctor.

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Issie, most of my friends with Lyme have autonomic dysfunction as well. For a while when Lyme was a big question for me I was on the Lyme boards and quite a few people on there also had POTS or other autonomic disfunction.

I agree that Lyme needs to be considered. I also think that if you consider Lyme you need to do your research and have a good Lyme Literate Doctor.

So what came first tablet. Was the Lyme first for most of them or was the autonomic disfunction first?

Issie

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Issie, most of my friends with Lyme have autonomic dysfunction as well. For a while when Lyme was a big question for me I was on the Lyme boards and quite a few people on there also had POTS or other autonomic disfunction.

I agree that Lyme needs to be considered. I also think that if you consider Lyme you need to do your research and have a good Lyme Literate Doctor.

So what came first tablet. Was the Lyme first for most of them or was the autonomic disfunction first? You see, I have interest in this too ---I was bitten by a tick and from that time on - things seemed to get worse for me. But, I know my autonomic things came first - cause I've had them most all my life along with EDS. So, in my case - the tick bite was not the CAUSE of the dysautonomia - but, may be a peripherial thing -IF there is a bacterial problem in regard to the tick bite --in my case.

Issie

For many of them it was the Lyme that came first, and for pretty much all of them their first symptoms that something were wrong were autonomic in nature. Lyme is so prevelent here. Many of our friends have dealth with/are dealing with Lyme :(

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I don't have Lyme. I am grateful. We thought for sure I did. My test through Igenex was equivocal - also did the My Lyme ID test from Neuroscience Labs. Also equivocal and negative for all of the co-infections (it's very rare to have Lyme without co-infections). With those tests and my clinical manifestations, my LLMD said my issues are not Lyme. Sorry if I confused you about me and my diagnoses.

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No, I don't think that has ever been looked at. But, I was biten and did have the red ring. Also, when we found the little bugger - I had what seemed to be the flu and was in bed with a very high fever. That was so many years ago and I don't believe I ever was tested. Surprising that I didn't pursue that. But, I have been on many antibiotics and natural type things that should have taken care of any of the problems that would have brought. So, really not thinking that is an issue for me ---but, maybe was at one point.

Do you think you will pursue it?

Issie

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I know some Lyme tests give a lot of false negatives... what are the most reliable tests to get for people who suspect it or want to rule it out?

(null)

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Yeah, im sending my blood off to igenex on tuesday. Issie, it can be hard to get rid of CHRONIC lyme with antibiotics. I dont know much about treatment yet but from what ive heard unless you get the antibiotics straight after the tick bite then the lyme is much harder to treat and people can have lyme specific antibiotics for 6 months and still not get rid of lyme. If you got bitten, had the red ring and then got flu like symptoms i would def get tested if i were you. Some people suffer lyme symtoms for 20 years before they finally get tested and diagnosed.

Testing is thru igenex but its really complex to decide which test to have if you dont have a lyme dr. Each test looks for different things like antibodies or lyme DNA. They also look for coinfections if you want. Im just gonna go overboard and have every tom **** and harry test they have to make sure i dont end up eith a false negative. You can ring igenex or they have info on their website.

Lyme is a VERY crafty bacteria. It has many diff ways of avoiding being killed by our immune symtoms and also antibiotics. When i googled the symptoms of lyme i have every single one- inluding the MS- like brain lesions (4 neuros have said i dont have ms). Theres a really good documentary on lyme which you can rent from amazon called "under our skin". Very alarming.

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I know some Lyme tests give a lot of false negatives... what are the most reliable tests to get for people who suspect it or want to rule it out?

(null)

Igenex labs and Neurosceince labs are the ones that seems most accurate. A good lyme literate doctor is also needed to get a diagnosis.

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Issie, yeah it wouldnt be great to have lyme but i have to say im hoping i do have it so then i can attempt to treat it. Ive heard of some people who were quite disabled with lyme and were treated and are much better. Whats interesting is that my friend was well and her lyme symptoms only started when she got pregnant. So, it seems her immune system was controlling it but as you know in pregnancy the immune system functioning changes. My point is i think with lyme there can be a long delay between getting bitten and having severe symptoms like dysautonomia.

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