posted
hey everyone i was just looking for some comments/opinions about the disappearance of symptoms or the 'coming and going' of symptoms that it says is typical of lyme disease
I guess how long does one go with/without symptoms. This is not referring to remission with treatment but just in general.
Reason being that I've been thinking I may have lyme disease over the past couple years as I was definitely in tick areas a few years back and was bit by something and have been feeling like crap over the past couple years with a bunch of symptoms that match every site about lyme disease, but randomly over the past two weeks most of the symptoms have seemed to disappear and I was honestly just about to order the Igenex testing. I guess I'm just wondering if I should wait this out and see if EVERYTHING comes back (mind you some of my symptoms like new allergies and sensitivities, light sensitivity, light flashes etc... are still present but my fatigue and abdominal discomfort seem to have lifted). I guess I just want to know if any of your symptoms have disappeared for this long of a time and then resurfaced later again (no matter how long the time period)??? I just don't wanna sit around for a month maybe thinking I'm suddenly getting better and then miss what could have been positive results from Igenex and the start of treatment?
Thanks Matt
-------------------- Age: 22 - Symptomatic Since age 19
First LLMD appt Oct 3rd to start treatment! Currently on 500mg Cefuroxime twice a day Posts: 52 | From Windsor, ON | Registered: Jul 2008
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
Yes, my symptoms have come and gone until they just stayed.
I would go months even with no symptoms.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
I wonder if now would be the right time to do the Igenex though. I am just thinking, if you symptoms aren't acting up, would it be more likely to come back negative? Can anyone answer that?
It is probably worth doing it anyways though. But you may want to keep in mind that less symptoms could mean negative test?
I was infected as a child, and had symptoms for probably about 6 months, and never got treatment. Then they disappeared for about 11 years and came back in full force later!
I feel like "overdoing it" is what brought them back. Or maybe not. If you take really good care of yourself, they may never come back, but they might!!!!!
I don't know what advice to give you! That is my personal experience though....good luck!
Posts: 4590 | From Midwest | Registered: Jun 2008
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
I had remitting/relapsing chronic fatigue syndrome for over 7 years before I was diagnosed with Lyme. I even had a 3 year remission. However, it comes back with a vengence. Get it taken care of asap.
IMO, CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
-
you say: " . . . some of my symptoms like new allergies and sensitivities, light sensitivity, light flashes etc... are still present . . ."
well, I'm so sorry to say, these are really very serious in light of lyme.
I hope you can see a LLMD and be properly asssessed and treated.
I'm glad other symptoms seen to have disappeared but, in my experience - and in light of your neuro symptoms - I'd be very careful not to overly exert - and to take very good care of yourself.
I do not want to scare you, but over doing can push one into no man's land. Still, gentle movement - living - having fun - be sure to do what you can, but listen to your body.
sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
The longest my symptoms ever disappeared was for about 6 weeks. This was before I knew anything about LD and was misdiagnosed with FM.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
wow you guys are all fantastic ... ive never really been on any sort of forum before and it seems ppl really do wanna help and will reply if they have input !!!! so thanks for everything ... well i did call Igenex and got them to send the blood sample kit to me (I'm hoping that was the only one i needed and not the urine or biopsy ones also) so I can think about it over the weekend and then itll probably arrive next week maybe so I wouldn't be able to do it during the end of the week anyways.
i just hate this and definitely feel like everyone except my family thinks im making everything up or that somehow everything is caused my stressed and thats what makes me stressed lol ... so thank you all as this is a great first impression
just wondering did you all finallly get diagnosed by Igenex or did anyone have any luck with an ELISA or anything else ... thanks
I'm pretty sure that if i did get it from a tick then its been at least 6 years as the last time i remember being bit is 6 years ago.
Keebler - sorry i didnt mean to mean that those 'allergy etc....' symptoms weren't bad or important i guess i just meant right now without fatigue and stomach pains/nausea i can stay up till midnight watching tv and eat junk food and wake up the next morning at 8am feeling rested and ready to go without being tired or nauseous.
-------------------- Age: 22 - Symptomatic Since age 19
First LLMD appt Oct 3rd to start treatment! Currently on 500mg Cefuroxime twice a day Posts: 52 | From Windsor, ON | Registered: Jul 2008
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posted
sorry just to add to the case lol .. this was another email that i wrote back to a lady named Kelly from the Canlyme site as I've wrote her with a couple questions and she clarified things for me so maybe you guys can give some input too if I paste it here ... its pretty long so bare with me if you have time to read through lol .. and thanks in advanced
""""""""But I just wanted to ask you a couple questions about some of the symptoms listed on the canlyme site. First off I matched 30 of the symptoms or at least what I think were 30 of them from the site. So I guess I'm just asking for some clarification or input from your own experience or experiences you've heard from other people.Because at this point I definitely feel like symptom number 47 that I am losing my mind or its all somehow in my head (even though some symptoms are physical) just because they come and go and then I overanalyze and try to find something I did the night before (like maybe something I ate) that could cause 'all' these symptoms lol. So below are six of the symptoms that I just wanna ask about
1)When it says oversensitivity to light does that also include sunlight? Like whenever I go outside this summer I'm outside for a mere 10 minutes-20 minutes and I guess this weird redness - looks like a rash on my sun exposed areas - vs. I'm a dark Italian and usually I'm black in the summer b/c I tan so easily and whatnot. I've been tested negative for lupus and other sun sensitive disorders.
2) For the flashing lights/phantom images - when I walk into rooms at night I sometimes see a flash in the corner of my eye and I think its my cellphone saying I missed a call so I turn and look only to find nothing there and realize my phone is in my pocket?
3) For the GERD - I have had an endoscope of my stomach and found that I have gastritis, from hypergastric secretion and have way too much stomach acid?
4) For allergy/chemical sensitivities -- this is a big one for me - the first symptom I remember after weight loss and fatigue was that all of a sudden I couldn't use any of the face products I had used all the way through high school b/c they now made my face all red and irritated (like suddenly I had hyperhypersensitive skin) and even my unscented body wash for sensitive skin gives me a weird rash for a bit after the shower. The other end of it is that I also find that now I reaction strongly to any medication - like I take half the lowest dose and I get the positive effects but also all the nasty side effects right away. Like after half an allergy pill I get the dryest mouth ever vs. a couple years ago I used to take one of the max strength ones ever day during the summer and not even realize I was on them????
5) For symptoms come and go - I guess I am just wondering from experience what some of your stories or other people's stories are on this one? Like I feel like absolute crap for months and then (like its been for the past week) I feel like I am crazy because most of the symptoms (cept the allergy/sensitivity stuff) go away and I feel pretty good in comparison and then they come back again after a week or maybe two if I'm lucky.
6) Lastly, for Bell's Palsy - does it have to be complete paralysis of one side of the face? Because I have definitely noticed even before I ever came across Lyme disease or anything on the internet that mentioned Bell's Palsy that my eyebrow on my right side of my face is a lot lower than the left side, and also the eye on the right side looks huge in pictures compared to the left side because the lower eyelid has dropped down a lot. It's very significant and I looked back through pictures and it definitely only appeared and stuck with me since all these symptoms started happening. But the thing is that I can still raise my eyebrow and close my right ear its just they appear to be dropping - and I'm only 22 so I dont think its ago related lol. """"""""""
Kelly was very helpful and asnwered based on her experience but theres tons of ppl on here that could help as well it seems
thanks so much -matt
-------------------- Age: 22 - Symptomatic Since age 19
First LLMD appt Oct 3rd to start treatment! Currently on 500mg Cefuroxime twice a day Posts: 52 | From Windsor, ON | Registered: Jul 2008
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groovy2
Frequent Contributor (1K+ posts)
Member # 6304
posted
Hi All
Lyme and co infections can come and go for awhile but then it will just stay -Jay-
Posts: 2999 | From Austin tx USA | Registered: Oct 2004
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posted
I'd recommend you get one of those big lists of Lyme symptoms & check off all the ones you currently have versus those you got rid of.
You may find yourself more symptomatic than you thought. My husband did this at my request. I've suspected he had Lyme for years, but he only tested positive last month.
When he sat down & filled out the list, wow, was he surprised how many little issues he had, adding up to a serious condition. His symptoms have come and gone over the years since he had Bell's Palsy about 10 years ago.
Personally, I had Lyme 15 years ago, was treated & did great for many years. But, I did have little annoying symptoms return. My docs could never figure out what the problem was, and I always tested negative for Lyme through Quest.
That all changed when I had a massive relapse 3 years ago, leading to disability. I did get my bloodtest done by Igenix at that point, and I came back positive. I have a theory that you are more likely to be positive if you are having a very symptomatic day. But, I could be totally off the mark.
Good luck finding the answer. I wish I had found it a couple years earlier. Then I may have avoided disability entirely.
Posts: 168 | From Delaware | Registered: Aug 2005
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posted
thanks, ya i ordered the Igenex testing kit so whenever that gets here I'll get it done so I'll update you guys whenever that comes back
I was wondering though if such symptoms like hypersensitive skin and new allergies lessened and/or completely disappeared after the correct treatment ? Thanks
-------------------- Age: 22 - Symptomatic Since age 19
First LLMD appt Oct 3rd to start treatment! Currently on 500mg Cefuroxime twice a day Posts: 52 | From Windsor, ON | Registered: Jul 2008
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