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artluvr09

Lyme Disease Ongoing Effects

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Have any of you been diagnosed with Lyme and have been treated but have lingering symptoms? 3 to 4 years ago I was diagnosed with Lyme Disease and Bartonella. I went to a Lyme specialist and was on medication for 3 years. My symptoms when I got Lyme disease were: Fever of 103.3, joint pain, headache for 3 days, and then a rash and a bulls eye. I was on amoxicillin and doxycycline for a while then it went to flagil and doxycycline, and I was on doxycycline for 3 years and then went off. I am so sick of being tired and no energy a lot of the time and my mom said maybe that is from lyme disease and ever since I got lyme my knee aches from time to time. some doctors say it can stick with you for a while others say it doesn't. Have any of you had lingering symptoms of lyme?

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Def sounds like presentation for Lyme. Long time to be on antibiotics though. There is a post-lyme syndrome/condition that is poorly understood at this point. You getting better at all? Should resolve over time. My $.02.

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T I have been better all this time but just tiredness I have a lot. and Trev425 what does $.02 mean? The other symptoms were only when I had the bad lyme 3 years ago. it didn't last long.

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There is a ton of controversy over whether chronic Lyme exists. My downward decline started with Lyme and Babesia. For information about chronic Lyme, a good resource is www.ilads.com. This is an organization based on medical professionals who believe and treat chronic Lyme. Sorry you are dealing with this. As a horse person, I know way too many people who have chronic Lyme and don't get adequate treatment for it because of the political controversy surrounding the disease.

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Katybug:

How long ago were you diagnosed with Lyme? Are you feeling any better? (I ask because my daughter who was diagnosed with POTS in November 2011 was diagnosed with Lyme about 6 months ago).

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Jpjd59,

I started having symptoms in Sept 2007 and was diagnosed with Lyme in April 2008. I was treated for 2 months with antibiotics by a non-Lyme literate doctor who is of the belief that additional antibiotics are not helpful beyond 8 weeks. I found a Lyme literate doctor in Dec 2008. She did additional testing including making sure I didn't have something other than Lyme going on (like autoimmune) and she also tested for many Lyme coinfections which is how we found the Babesia infection. I started back on an antibiotic cocktail and also on flagyl for the Babesia infection.

I feel different than I did then but better is not the word I would use. I still have joint pain but not the crippling stiffness and pain that I had then. I would wake up with my hands cramped shut and have to walk hunched over like a little old lady because I couldn't straighten up for hours. I had cognitive issues, fatigue, and my migraines started to become frequent. By Dec 2009, I stopped improving on the antibiotics so we stopped. I had made great improvement from where I started. I steadily declined after that though developing POTS and MCAS symptoms. In my research I also found that I probably had EDS (which I have subsequently been diagnosed with). My EDS related symptoms have also shown a steady progression from that point. I have no proof but am in the camp of people that believe that a Lyme infection can be the trigger for gene expression for EDS, POTS, and MCAS. I can definitely identify that Sept 2007 is when the debilitating symptoms started and they have morphed since then but I have never been well since.

All of that being said, I do believe that not everyone with Lyme will experience this. I think a lot of it has to do with how quickly it is diagnosed and how aggressively it is treated and if a person has predisposing factors. I truly believe that testing for Lyme coinfections is extremely important as many of them, such as Babesia, are a different type of microbe, not bacteria, and therefore need additional types of meds to eradicate the infection. I hope this is helpful to you. Feel free to ask more questions or PM me.

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I don't really have anything useful to contribute to the topic, but it's interesting how often Lyme comes up on this Forum. Seems like there's got to be a pretty solid connection (in at least some cases) between Lyme and POTS/dysautonomia. It's just to frequently related to be coincidence.

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I was wondering Katybug and whoever else was tested for lyme, did you go through IGENEX? Or did you do the Western Blot.

Thank you

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