I have been in treatment for two years for Lyme, Babs, and Bart. Right now I'm on IV Rifampin and Zithromax.
My LLMD told me last Friday that he believed I was having an inflammatory response b/c symptoms have cropped up again. I had feared the combo had lost its efficacy b/c I've been on it for almost four months now.
Most of my symptoms are caused by Bartonella.
Classic Bart papules and ugly, stretch mark like marks all over my back and stomach, horizontal and vertical. The paps are on my upper thighs also. They showed up after I began treatment.
I have a plethora of neurological symptoms that I've had before, but they're back with fervor:
Bells, neck stiffness, tingling, numbness, and tremor. Some eyes twitching, insomnia, horrible depression. Plus bad muscle pain, pain the soles and calves and obsessive thoughts.
What most worries me are new symptoms-- a cold feeling in my belly. It's so odd. I have had GI issues for a while and gastritis, IBS, and acid reflux, but this is new.
I also feel hungry a lot, have consistent nausea, make growling sounds and the painful IBS has begun again.
Has anyone else had this cold feeling?
Some new eyes symptoms have surfaced as well, pain, pressure, and horrible headaches on the top of my head.
I went to an opthamologist and everything was normal and had an MS screening two years ago.
I am having another one April 9th (a third brain scan--1st one in 2 years) just to make sure I don't have MS and Lyme.
Anyway, I was hoping to get some thoughts.
I'm feeling really tired and scared.
Thanks, Allanah
-------------------- Allanah Posts: 36 | From New York, NY | Registered: Apr 2008
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Allanah,
I am so sorry for what you are experiencing.
I don't have the exact cold feeling in my stomach that you describe, but I do have a lot of the other Bart symptoms.
I, too, went to an opthamologist(three, actually) and was told my eyes are fine. So, I understand your situation.
My LLMD said that most of my stomach issues were due to Bart. In addition, with testing, it was discovered that I am sensitive to gluten, milk and soy. Eliminating these things has helped a lot, but still, I have some problems.
I was previously diagnosed with reactive hypoglycemia, long before I was diagnosed with Lyme, although I believe I was infected at the time.
I wish I could offer you some good advice, but I am still finding my way myself. The one thing I can say is that I have been through (and am still going through) most of what you have shared.
Factive helped me the most with my Bart problems. Last time I was at my LLMD's office, the Nurse Practitioner called in two other nurses to look at the photos I brought of my skin issues.
Wishing you the best, Leelee
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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Reactive hypoglycemia sounds really unpleasant from what I just read. On top of everything else being so sensitive to insulin from carb ingestion would make be batty. I'm sorry.
I will absolutely try to keep my gluten and dairy down and my carbs actually. I have not been mindful, though I know I should be. I am good about sugar.
Factive is not something I've tried yet, but I will be asking my LLMD about it during our next appointment. I'll let you know if he puts me on it and how I fair.
Thanks again for taking the time and for sharing.
I wish you health and normalcy, Allanah
-------------------- Allanah Posts: 36 | From New York, NY | Registered: Apr 2008
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Leelee
Frequent Contributor (1K+ posts)
Member # 19112
posted
Allanah,
You are really experiencing some unfortunate symptoms and I am so sorry.
Please do let me know what your LLMD suggests next time you have an appointment.
I wish you better health, Leelee
-------------------- The ultimate measure of a man is not where he stands in moments of comfort and convenience, but where he stands at times of challenge and controversy. Martin Luther King,Jr Posts: 1573 | From Maryland | Registered: Feb 2009
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I also think that a large portion of my illness is Bart-related and have experienced much of what you describe.
I also get a cold feeling in my gut. Often for me, after I use the bathroom, I'll feel a moving cold sensation in my gut. I suspect this is inflammation related?
I get a similar sensation in my joints, if I rub my knees or ankles, I feel a moving cold sensation inside and around the joint.
Not sure this is the same thing as what you are experiencing.
I only once clearly had the stretch mark rash, but I'm plagued by popules as well, they come in bursts often on my forearms and legs (btw. ankle/knee), as well as my face, chest, back. Thankfully they are usually really small and hard.
I've been treating for about 1.5 years and am greatly improved. I had a lot of success with Factive. It was my "turn the corner"
Presently I am using Bactrim, which I tried a year ago but Herxed too hard. I tolerate it better now. I'm also currently on mino and zith.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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It sounds very similar. I am definitely going to ask my LLMD about Factive. It sounds very effective against Bart.
What's mino and how do you feel on the combo?
Never tried Bactrim either, but Zith I've been on twice. I'm on it now actually along with Rifampin.
My lines are much lighter, which is a great sign, but these symptoms are cuckoo. The papules are so annoying and it sounds like they are awful for you. I am so sorry.
Do they disappear with treatment?
I keep telling myself that its an inflammatory response. My LLMD thinks so too, but the last time he thought this I was backsliding, so I am paranoid.
Reading people's struggles I am shocked that we haven't all checked into funny farms with the many different and alarming ways our bodies manifest this disease.
Well, thanks to you and Leelee I have a treatment option I didn't have before or at the very least a good question for my LLMD when next we speak.
Thanks again for your time and support.
-------------------- Allanah Posts: 36 | From New York, NY | Registered: Apr 2008
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I've been on mino (or minocycline) and zith for most of my 1.5 years (and counting) of treatment. I don't ever feel much reaction to the mino, but the zith still seems to pack a punch after all this time.
When I tried Bactrim in my first year, it really knocked me down, I was Herxing strongly and continuously for 4-5 weeks until I stopped and had some time to clear out the aftermath.
It was after a few courses of Factive that I started to feel better and I am guessing the improvement is why I can now tolerate the Bactrim.
I've also used plaquenil and tindamax at various times, and both have sent me packing. I hope to do another pulse of tindamax soon, as I do think it is very effective, I just need to be careful with it.
I also tried the "humaworm" antiparasite treatment, just out of curiosity and also since I was wondering if that could be a factor in my illness. I don't think it did much for me, though it did help me be very regular which was nice as I sometimes get constipated after Herx's.
I also picked up some tea from the regular grocery store that has milk thistle in it, and that seems to help somewhat with processing all of the meds and their aftermath.
Posts: 455 | From Was in PA, then MD, now in the Midwest | Registered: Nov 2008
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I'm definitely going to ask my LLMD about Bactrim and Factive. I have read a little about the latter and the only thing that worries me is that it's a quinolone as is Levoquin and I could not tolerate that at all.
Horrible muscle and tendon pain and my LLMD stopped it before the week was up, but I will definitely ask. I'll also consider humaworm and have just added milkthistle to my regimen, so keeping my fingers crossed that that will help detox.
I'm making some changes with my physical activity, decided this weekend to cut out all carbs and added a fiber supplement, so I maybe that will make a difference.
Thank you for sharing and for your helpful suggestions. I'll definitely keep you updated.
Until then I wish you continued improvement.
-------------------- Allanah Posts: 36 | From New York, NY | Registered: Apr 2008
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