posted
Here are the last weeks. I'd like to know what you see here. Let me tell you that my symtpoms began with neuro symptoms, first tingling, numbness, vertigo (not rocky boat), then progressed to feeling hot, malaise, connective tissue pain, feelings of fast heartbeat, air hunger, depression and anxiety, migraines with sound and lt sensitivity, vision issues-blurry right eye pain, choking sensation, with attacks that felt like every nerve was ON- like anxiety but more physical- these happened every now and then.
treated 1 yr on doxy- no change AT ALL Added bactrim- depression, headaches, felt insanne BAD- had to go off when i tried again same thing happened, so he took me off.
next 6 mths biaxin and amox- significant reduction in tingling, vertigo, dizziness, depression, anxiety, air hunger, headaches and migraines. I was even working out, having parties..etc with occasional brain fog, and minor symptoms.
November- malaise and depression, weakness and dizziness began coming back. Added plaquenil. Connective tissue pain went away and I thought i was doing better.
One mth ago, saw llmd bec weakness/dizziness still there as well as my other symptoms but not that bad as i was able to drive the whole 5 hours there and back... and he wants to treat babs then bart. Tell me what you see:
week 1
m air hunger/manic rocky boat began around this time and MAJOR anxiety attacks- 3-4 perday- cant leave the house t manic/headaches/migraines, insomnia w headaches/migrains with sd/lt sensit, vision worsened, bad hot feeling and nerve pain th BAD depression/migraines, felt like i was burning from inside out fr BAD depression suicidal terrible symptoms sat off malarone sun
second week off malarone rocky boat remained (NEVER HAD BEFORE)
mon- terrible GI symptoms tues- ovarian cyst for the first time very painful wed- t off intense tingling (first symptom ever) f off ' '' '' ' s off s off
monday- began art (100mgs) air hunger after 5 hrs tuesday- air hunger after 5 hrs wed- depression, air hungar, terrible anxiety attacks, nerve pain thurs- depression- air hunger twice friday- horrible depression- intense rocky boat, feeling toxic that all get worse after eating
sat- off art same depression sunday- woke feeling hot and depressed but depression lifted and manic began
Im still rocky boating, dizzy, but i have energy and dont feel depressed.
MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
sounds like babesia, and I wouldn't be at all surprised to have these symptoms worsen for the first few months of treatment. Sorry about the pattern of manic and depressed, that's very unpleasant and it's really common for people to feel anxiety and air hunger and depression all at once when adding new anti-babs agents.
-------------------- Symptom Free!!! Thank you all!!!!
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Well I am no doctor, but it looks like Lyme, Babesia and possibly Bart.
Amoxi/Biaxin also helped me with numbness/tingling. Bicillin/Biaxin was even better.
Nerve pain is brutal for me, but I have had Bart twice (re-infected) and when it is gone it subsides to a degree, Lyme can also cause nerve pain.
Treatment of Babesia typical herxing is rocky boat feeling and and increased symptoms. Babs needs from what I have heard at least 4 mos treatment, of course until it is gone though.
It is about hitting the right combo for all of us. If it were me, I'd consider going back to Amoxi/Biaxin or Bicillin/Biaxin w/babs treatment adding in Malarone or Mepron.
A lot of the anxiety and depression I think we all get, I get it badly and totally associate it w/Lyme.
It takes time to find the right combo and even then the combo's you do try should be tried for 90 days to see if anything improves...if not I'd ask my LLMd to move on to something else.
Supportive symptoms measures, Xanax, pain meds whatever necessary for now to get you through is necessary as well.
Here is a list of co's and treatments - other co-infections are possible too, Mycoplasma, etc.
posted
What I notice is that when the depression comes, all I think about is how I feel and how it might not be a herx, and I analyze it to death and can't seem to stop and then get worried and obsessive about what if its something else- not lyme or bart that I am just not treating and suffering while doing nothing. Its like I cant take another minute feeling like that and sleep doesn't even ease the pain...because the anxiety keeps me awake all night off and on.
I want to treat it but need a way to minimize the depression and anxiety. The xanax doesn't touch the anxiety at all and nothing helps the depression- talking, crying, bathing... nothing but getting off the meds.
If i had a timeline with the herxing, I might be in a better place mentally during the herx.
I've done two weeks...how many more until I get some relief without having to go off the meds?
Posts: 319 | From nj | Registered: Jul 2008
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posted
Cholestryramine helped alot of the same symptoms you describe for me. Sounds like toxins and porphrins building up to me. I am not a dr. just stating what I recognize and have been through.
Posts: 433 | From new york | Registered: Dec 2004
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
What exact meds are you on right now? What does your LLMD say you should do?
Posts: 4035 | From Mississippi | Registered: Jul 2008
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I tried malarone for a week, went off for a week and then tried art, which doc instructed.
Im waiting on hearing back from him for him to tell me what to do. But i was interested in hearing what you all thought when looking at the symptom patterns Posts: 319 | From nj | Registered: Jul 2008
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
I don't think there is a real pattern. Just various symptoms that can be caused from having LD and or co-infections. Could be a herx, could be a flare.
I myself have tried to keep a record of my own symptoms for the last 6 months and I absolutely cannot come up with any particular pattern.
It is very easy to get obsessive about it all. I do it too. Trying to analyze it all to come up with that perfect answer that will lead to a cure.
I think the anxiety and depression comes from the illness and then it gets magnified even more by our need to try and figure it all out, and the fact that we can't.
It is all very stressful!
Seems like you are on a lot of meds, if you are taking amox, biaxin, plaquenil and malarone all at the same time.
Posts: 4035 | From Mississippi | Registered: Jul 2008
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posted
The question is not what we see from what you wrote, it is what is missing from what you wrote. What is your list of medications? I see the Xanax listed. Xanax will cause insomnia and increased anxiety. It will make you afraid to leave your house.
Are you taking something for pain? Muscle relaxers? Herbs? Cordyceps or stimulants for energy? Maybe your 'panic attacks' are respiratory depression - shortness of breathe? Maybe you have some normal allergies and the drugs you think are helping you are actually exacerbating your symptoms or even causing all of your symptoms.
Make a time line of every pill you take, every symptom you have, every morsel of food or drink, every herb, vitamin, everything that enters your body, and your mind for that matter. Only then try to draw conclusions - based on all the facts.
Posts: 42 | From Lymeland USA | Registered: Mar 2010
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posted
Esacape- As far as the xanax goes, I only take it as needed and only take less than .25 mgs per day. I've been taking the xanax for over a year and never experienced any problems with it until recently when I needed to take more when i started the Malarone.
The symptoms, the anxiety began to get really intense after beginning malarone. before that it was intermittent lets say 1-2 x's per 2 weeks to 3-4 times per day.
That said, I will be aware of that symptom from the xanax and see how it affects me on days I dont take much.
The same thing happened when I began Bactrim for babs last year, and the same thing is happening again from the Art and Malarone.
What I am trying to figure out is which symptoms might be the flare or lyme and bart and which are a babs herx.
Im thinking the babs herx is the intense anxiety (since its intensity increased significantly), depression (since I havent had this problem being in bed for a month since i was first sick), rocking boat feeling (since i have never had it before at all), and my other symptoms that might be the bart or lyme.
If its not ALL a herx, then I may need to add another med that will be more effective for lyme and/or bart so Im not dying every day. Or, maybe add a low dose of that med with pulsing the art to give me more time to detox.
Eh- who knows. Lol I know, its like going in circles. I will send my doc this list and speak to him tomorrow.
thanks for the info! Oh and no, im not taking any of those that u mentioned- muscle relaxers... just vit D and a multivit. But i do get your point about all meds, even herbs causing their own set of problems and issues. Posts: 319 | From nj | Registered: Jul 2008
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