Although I had few symptoms, in the process of having my hearing tested,
the Eye, Ear, Nose Specialist; somehow suspected Lyme and ordered
Elisa tests and later a Western Blot. ( both somewhat positive.) Refered me to
a ID who another CD Peptide test... (some poistive).
[I began what turned out to be 2 months of Doxycycline 100.]
At that point, I contacted and had appointments with both a:
o LLMD - Holistic in DC area
o LLMD - High Med in Baltimore.
The LLMD - Holistic
ordered a IGenX Western Blot and additional tests including a CD-57 .. and scheduled a later appointment below.
o The LLMD - High Med in Baltimore...after reviewing my prior tests..
said that based on my lack of symptoms and a thourough history and physical exam ... that
he did not think that I should be concerned ... my bodied had/is handling it.
He did not recommend further tests nor treatment.
o The LLMD - Holistic
He said that he believed in chronic lyme,,, however,
he based his methods,diagnosis, treatment on :--- patient's symptoms, tests and history.
After IGenx and other test he saw me a second time and said that in light of my history and lack of serious recent symptoms...
he too said that
He did not recommend further tests nor treatment.
He did say that: while it was possible that I did have some chronic lyme, that could flare in a trama;
that my bodies imune system had handled it and was handling it.
I will continue to monitor the progress and breakthroughs in Lyme Diagnosis and Treatment...on this site and others
but at this point. I will:
o monitor myself for symptoms
o get on with my life.
I do suspect that I may have some minor impairment due to Lyme Nuero affects, but at my age of over 65;
some of these are just normal old age.
Would like to hear from any or you who have had
***"Few Symptoms + Positive Lyme Tests"***
I hope you don't have this. Maryland has a lot of it. I live in Virginia and have a positive Lyme test (antibody and two bands indicative of Lyme - igm only) igg is negative.
Anyway, my understanding of the Western Blot (antibody presence test) is that it could be a number of infections that you're exposed to that cause the antibody to be present. So, some people may have a positive test for the antibody -- in fact false positives are probable for whatever reasons the more you take the test -- and this antibody could be for other infections besides Lyme.
It also takes a while once exposed to the Lyme bacteria for the antibody to get to a level where it's detected.
If I had this to do over again, I'd worry less about it and less about surfing the Internet looking for answers...And, I'd try natural healing first. The jury is out on antibiotics and the only doctors who prescribe them are LLMDs. I'm on them and they seem to think when I go off, I could be on again.
If you are well off of antibiotics -- don't go there!
There's no magic bullet with this disease. The disease is not recognized by conventional medical professionals -- yet. There is no research being done. So, if you don't have it, trust me, you wouldn't wish it on your worst enemy. Getting on with your life is the best. Keep stress to a minimum and enjoy your life as much as you can!
For me it is presently hard for me too..
"not keep looking over my shoulder"....
The two things that I have had to consider are:
o my symptoms
o my tests
i.e., The tests are positive... and yes their can be other causes for a positive...
I have printed out a half a dozen different symptoms lists.
( Many symptoms are also symptoms of Other dis-eases.
For the most part my health problems i.e., symptoms have been around for a long time...
20, 30 40 years.
It is not like many Lyme sufffers I read about who have a whole lot of symptoms.
Mine do not seem to coinside with many that I read about.
At any rate my last appointment... that seemed to say I should not be concerned ...
was only two days ago. It's going to take awhile for that to "sink in".
Some of my ongoing general "symptoms" are quite likely-- currently being exaserbated -- OR could well be related to anxiety, worry, staying up too late online/researching and disrupting my sleep patterns.
Talking to myself here:
I need to as you all have said; give my self a break and time for my life, body, mind and spirit to get back to normal...
( Is there such a thing as "survivor guilt" in the case of Lyme.???)
Don't be guilty about anything. Just be thankful (and I know you are) that you are not terribly sick. I'm a person who does not like to seek medical treatment so I only go if things get unbearable. If I had a positive test but no bad symptoms I have to admit, I would ignore it. Not that you should but that's the kind of person I am.
A friend of mine has been sick with neurological symptoms for years. She lives in a hugely lyme endemic area. She has never tested positive but was clinically diagnosed and treated with IV antibiotics etc..Her husband on the other hand tested positive but has no symptoms. The doctor did treat him though. It seems that some peoples immune systems fight things very well and keep the bugs in check.
Men for some reason have a weaker immune system than women. Consequently, they have fewer auto-immune disorders. Women seem to have lingering issues with Lyme disease and I guess that would be why -- the immune system goes into overdrive and the end result is pain as it fights an infection that no one knows for sure exists.
I never felt better since I was "diagnosed" (and I hope I explained how nuanced the serology tests are -- i.e. false positives, false negatives -- unreliable) as when my sister came for Christmas. A part of me now wonders if some of my symptoms aren't exacerbated by not having family support network nearby. I wonder too if having family and or a strong support group of friends can't but help many diseases that turn chronic. Let's face it, we are an adrenalin-driven country. That can't be healthy. Is there anything you haven't done yet, that you have wanted to do? Travel? See your grandkids play soccer? Meet a long last cousin? Re-connect with a long last love?
Cindy903 says: "The disease is not recognized by conventional medical professionals -- yet. There is no research being done." and "I'd try natural healing first. The jury is out on antibiotics and the only doctors who prescribe them are LLMDs."
I have to disagree:
1--Lyme IS recognized by conventional medical professionals; it is imprecise testing that makes diagnosis difficult and subject to differing opinions. As the tests improve, diagnosis will be more certain, and treatment will standardize.
2--Research IS being done.
3--Natural healing is fine, as long as it is effective. Artemisin is an herbal treatment that some use against Lyme; I can't speak to its effectiveness.
4--Not only LLMDs prescribe antibiotics; the minimal standard of care is antibiotics for a brief period. LLMDs however believe that longer treatment may be necessary if the disease has established itself after a recent infection which has been untreated.
5--Consider co-infections which sometimes come with Lyme: babesia, ehrlichia, bartonella. Each responds to varying drugs over different periods of time.
The difficulty with Lyme is that it goes through several life stages, just as syphilis does: an initial infection, and then it goes dormant for many years and even decades while it lies quietly in your nervous system. Have you read about tertiary (third stage) syphilis? The brain is ultimately destroyed by the bacteria, resulting in dementia and death. As bad as a new Lyme infection can be (and was for me), it is the potential for dementia and early death that concerns me the most.
Some people manifest Lyme not in their nervous systems and do not suffer from it much after the initial infection; some people (like me) got it in my body and in my brain (neuroborreliosis) with terrible effects. Not treating it was not an option for me: I was going downhill very quickly.
The nature of Lyme to infect and then lie dormant is part of the reason mainstream medicine approaches Lyme with a few weeks of antibiotics and then ascribe any further symptoms to something they call 'post Lyme' syndrome -- symptoms without disease, I suppose like, every winter, getting aches in the ankle you broke years ago even though it is 'healed'.
For those who get a Lyme infection and then appear to recover, perhaps you have, and good for you. However there is some concern over whether the recent spike in Alzheimers and dementia is the result of dormant Lyme infections acquired some decades before, as Lyme was first recognized as spreading through the US.
I don't know about you, but I was not functioning on a daily basis when I finally got diagnosed and began treatment for Lyme. That was over two years ago, and I am incredibly better now -- but not yet cured. I, for myself, will not mess around with this sneaky disease and want to see it dead, killed and gone out of my body, whatever that takes.
Because I had neuroborreliosis (Lyme in my brain), it was clear I needed treatment; another family member had it not in the brain and seemed all right, but after treatment they can now see how run down and miserable they were before treatment -- and this is in a very healthy and active young adult.
I don't like taking these meds, but when I went off them briefly due to a drug reaction, I felt great for a month, and then began to slide again. A new drug regimen was begun, and I am continuing to get better. I intend to treat until symptoms are gone and then do not return. When will that be? Perhaps until the 12th of Never, but it's better than where I was.
Sorry for the downer of a posting, but think long and hard before you decide you're okay without treatment. It's your decision to make, but don't let the chaos in the medical community be the deciding factor.
Yes it is recognized to some degree by standard medicine but I can tell you from experience not one physician I saw would have even thought of ordering the test if I hadn't mentioned it. Two were concerned about it after I told them about the rash etc...I even brought pictures. Both of those physicians told me I did not have it when the test came back negative. End of story. So I feel it really is the testing that is flawed. I work in the medical profession and I can say that patients are treated mostly by test results. This is how mainstream medicine works. It really seems to take a doctor who looks outside the book and is willing to treat based on his/her judgement and the patient's history and symptoms.
Jackie, I did not think your post was a downer. I thought it was truthful and informative.
I guess I should say that "Chronic Lyme" is not recognized in my experience by conventional medical doctors in the area where I live. Only one doctor was thoughtful enough to order a test...
What research of any substance is being done on Chronic Lyme?
I'm on the antibiotics route -- just like you apparently. I want a cure too just like you...I don't know what would have happened to me had I gone the natural route. Some folks have healed that way too. Also, I was trying to reassure someone that they might not want to worry...which I suppose since I'm not a doctor maybe not my call.
Anyways, one reason Chronic Lyme is not accepted by the mainstream medical folks is that the research does not show that antibiotics help -- or, if it does, they don't buy it. Something is going on that makes them look the other way...This is just my experience among 5 out of 7 doctors I've seen since contracting this.
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