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Posted 7/19/2015 1:34 AM (GMT 0)
Hi There,

I'm new to the forum, but not to Lyme...I've been fighting it for two plus years. I'm on antibiotics (Minocycline and Azithromycin), pulsed doses and recovering slowly. I was also told I had RA due to the Lyme (positive Igenex test), my RA numbers have gone down significantly since starting tx in Feb 2013. Is it fairly common to feel almost "normal" and then horrible on and off? I seem to feel great at times, and others times I just ache and feel exhausted. I live in a very hot state and my symptoms have increased since summer hit. I cannot tolerate cold either...75-80 degrees is most comfortable.

If anyone can offer advice, I'd so much appreciate it. I've was an extremely healthy person before Lyme, I stay as active as possible but nothing near what I used to do. How long does this last? I'm not sure how long I may have had Lyme, I've had so many tick bites, never a rash but I've heard some people never have one.

Thanks Bunches,

Crystyne
Posted 7/19/2015 1:56 AM (GMT 0)
Welcome to the forum Crystyne!!!

Have you been on the same abx combo since Feb 2013? sometimes rotating a new set of meds can help get you to another level. Are you working with an LLMD? they might be able to offer guidance in that arena. could even look at herbals as well, there are some powerful and very effective herbal therapies that can be used in conjunction with abx.

Wishing you all the best in your recovery!
Posted 7/19/2015 2:48 AM (GMT 0)
Hi Sayyadina,

Thank you for your reply, I'm so glad I joined this forum...Lyme can be very lonely at times. Sounds like you've had an awful time with it like everyone else her, it's so hard to get rid of. I did see a rheumatologist who told me I had RA, never acknowledged my prior history of tick bites and sent me home with Metholtrexate, didn't even bother testing. I took the MTX twice and though I was going to die, told the doc and she refused to listen to me, never saw her again. Finally saw a holistic doc that tested me for RA, but also referred me to a doc that specializes in LYME, so thankful for that! It seems most of the folks here had similar experiences...undiagnosed for years and now struggling to get their lives back.

I did have a lot of the neurological symptoms but fortunately many have resolved. Still have some problems with concentration and memory but its very minor.

Crystyne
Posted 7/19/2015 3:01 AM (GMT 0)
Hi Crystyne - welcome to our community! I'm glad you joined this forum, too!

So, are you interested in sharing what your protocols have been in your 2 years + treatment?

Have you been treated for co-infections?

It is 'normal' for lyme for symptoms to fluctuate, to have good days and bad, but as treatment progresses, we should be seeing more good days, and the bad days may not be as bad.

Are you doing enough for detoxing?
Posted 7/19/2015 3:04 AM (GMT 0)
I have been on the same antibiotics but different dosages. I started to add Clindamyacin, but couldn't tolerate it at all...my doc is going to have me try Bactrim. I'm nervous to start it because I'm super sensitive to meds, so my doc is starting me out on a very low dose.

My doc doesn't classify himself as an LLMD since I live in a state where it's not widely recognized. I only found out about him from a fellow Lyme friend (she finished treatment and is doing well), and a holistic doctor. He's been great and listens to all of my concerns...when I first saw him, I could barely function...I'm about 75% better...it's the last 25% that's taking forever:)
Posted 7/19/2015 3:20 AM (GMT 0)
Welcome to the forum Crystyne! You've come to a good place for learning and for getting support. I have the same temperature range as you do and this summer has been much hotter than typical. The heat just shuts me down.

I wish you the best on your road to recovery.
Posted 7/19/2015 3:27 AM (GMT 0)
That is a long time to be on the same antibiotics. That is good that you will be switching it up...
Have you and your Dr. discussed treating co-infections?

Have you thought about seeing a LLMD to help you get to 100%?

Will you be taking the Bactrim by itself? ...or adding something to it?
Posted 7/19/2015 3:50 AM (GMT 0)
I was on zith alone for 4-5 years, I didn't want to think about my health anymore and that was the 1st med my doc prescribed to me. I didn't really understand all the treatment options.

But eventually got fed up and ended up learning online about all the other treatment options that were possible from people with similar health issues. Best decision I ever made was to rotate and try new meds. I should've done it much sooner.
Posted 7/19/2015 5:54 AM (GMT 0)
Yikes, Sebreg! On Zith alone for 4-5 YEARS?

Did you improve on it...and if so - at what point did you plateau?
Posted 7/19/2015 5:12 PM (GMT 0)
When treatments plateau, I would check for other complications. Many of us have high viral or fungal loads, some brought with the initial infection and some acquired from our immune systems being so overwhelmed all the time.

Before I started tx for lyme & co, my LLMD tested me for 6 viruses. I had high titers or reactivated loads for 4 of them. And also had a high fungal load. We focused on them for a good couple of months and also worked to heal my gu from the yeast/fungal overgrowth so that by the time I started lyme & co tx I was much more capable of handling the tx and my gut was more capable of processing the news I was taking.

But I've also had to maintain high levels of antivirals throughout tx, otherwise the high viral load gets dominant and disrupts everything. It has been a struggle.

p
Posted 7/19/2015 5:20 PM (GMT 0)
I will see my doc early next month and ask about co-infections and treatment. I know he's up to date on all the Lyme issues and does see a lot of patients from out of state. He's one of the few around that even acknowledge Lyme exists in my area. He may be listed on some of the forums for LLMD'S, I'm not sure...we many not have any listed for my state. I do know he refers patients over to the next state if they need further intervention with IV meds.

Right now I'm on a somewhat modified version on the Marshall Protocol due to my sensitivity to medication. I have greatly improved, but I have to be cautious since I work full time and can't afford to miss work.

I also wanted to ask how long Lyme can be present in the body before actual symptoms manifest...I've heard year, and just a month or two. I'm confused on this one.
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