posted
I'm on my fourth week of doxy, just increased to 400mgs. I woke this morning (middle of the night actually) feeling like it couldn't get any worse.
If this is a pattern, three weeks of really sick and a fourth of even sicker, when is there any time for improvement?
I'm not sure what to think. Even more depressed and filled with anxiety. I have nothing in my life to compare this to.
Posts: 199 | From utah | Registered: Jan 2009
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posted
You seem to be herxing. If so, that's a good thing. Feeling bad to feel good seems strange, but it's true. If you're really worried, back off you're abx for a couple of days. If you are herxing you will start feeling better. That should relieve your anxiety.
Posts: 51 | From Reno, NV | Registered: Dec 2008
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posted
The symptoms will get better. My first dose of doxy the herxing was immediately!! I had it for 5 days the first month, then exactly 28 days later, I had only 3 days of herxing, and this past month, only 1 day of herxing.
It will get better!!! You are killing the spirochetes off when you feel sick. They release toxins that are making you feel so bad.
Keep going!! Shalome
Posts: 893 | From Florida | Registered: Dec 2008
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posted
It always come back to "my LLMD" I don't have one. There are none within reasonable access to me, either by distance or finance. So I'm trying to work with my PCP and guidelines sent him by ILADS, so I'm in the dark about everything
Posts: 199 | From utah | Registered: Jan 2009
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posted
bwillis... Im not going to sugar coat lyme treatment. I can only tell you that I have gone through what you are going through, and have been on the brink and ready to end it all. That is a sure fire cry for help that there is something seriously wrong...and its called lyme. Lyme messes with your emotions, your mind, your thoughts, and it tortures you to to know end. It gives you anxiety, suicide thoughts, depression, it wears you out physically, and just when you cant take anymore, it pushes harder and harder.
But...all it takes is just one moment, one moment, glimmer of feeling good, and theres proof that you can and will get better. Theres no other way to say it then that.
Many of us have been down, on the floor, crying in pain to end it all because you just can't take it. But you know what, its just not your turn to go, not by this method. You have to have faith and strength to fight it, every single day. But sooner or later...yes...it will get better, it really will. But it all starts with the attitude that you are NOT going to let some miniscule little parasite destroy your life.
Find the little joys in life, your kids, your spouse, your pets, a sunset or sunrise, any moment of peace, love, and happiness, and hang onto it.
This will all pass... and remember...when herxing...its even worse and it can be scarey to be so out of control.
Ok?
But you are not alone... and this forum is excellent for getting true, factual, supportive information to get through the rought times.
Posts: 514 | From . | Registered: Apr 2008
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nenet
Frequent Contributor (1K+ posts)
Member # 13174
posted
bwillis,
I'm sorry you're going through this, but I am glad to read that your PCP is working with you through the ILADS guidelines. That is amazing. Is he or she willing to treat long term? Have they tested you for co-infections?
Have they reviewed the guidelines to determine whether you might have any coinfections (they are also a clinical diagnosis, as Tick-Borne Diseases do not have good testing)?
If you have any co-infections it is important for you and your PCP to read up on them and the ILADS treatment. We can help you here with finding and discussing resources for that.
As for ways of working through your treatment and finding hope and rationale, here are a couple of things that have helped myself and others to see the light at the end of the tunnel. It can be very hard to notice it without some objectivity and record-keeping.
1- You need to keep track of your symptoms and your treatment, even your food intake, each day. Give yourself a rating for the whole day or throughout the day, as to how you feel, scale of 1-10. This will help you see a general trend over a long time - it will most likely take a long time to see marked improvement, but it is worth it!
2- If you can, enlist the help of a family member or friend to give you an objective outsider's perspective on your progress as well - this has been priceless for me. How do you seem to them? Ask for them to look for standout things, small facets of wellness.
ANY difference in your state of health is something to note, even if it only lasts for a minute or two of one day out of one month. It is progress, and can be forgotten about and lost very easily in the weeds of the day to day suffering.
The following are just some examples of many Lyme (and co-infection) symptoms one can have and see improvement in:
a- Some neurological signs to look for: Clearer-headed? Less agitated? Maybe one is able to engage in more conversation than before? Eyes and expression more present? Face is a little more expressive for a minute or two?
Less numbness in extremities for a brief time? Maybe less crying or depression for a couple of days? Maybe fewer episodes of seizures or weakness in limbs? Perhaps a slight gain in cognitive ability or focus for a moment? All of these things and more are very important to notice.
b- Possible physical signs to note: Less pain at any point of the day? Any less swelling or inflammation? Any energy gain? Did you get a moment of better flexibility or a slightly better night's sleep? Did you for a while go without the usual fever, or flu-like aches?
Did you do something physically at any point that you might not have even considered doing a few weeks ago? Maybe you had a longer break between heart palpitations or air-hunger? Every seemingly small thing is something to make note of. They each add up to the big picture of your recovery.
3- I never thought I'd write anything that sounded like this, but know that each day you wake up is a victory and a gift for you and the people around you. Understand that this disease will not get the best of you, but make you stronger, and that you are a whole human being and have much to learn and share.
If some perspective helps, my husband just reminded me to tell you that a year ago, I would not have been able to write this reply to you, much less read your thread. I am still on very low-dose antibiotics because of how sick I was/am, but I am gradually improving, and am so glad I have stuck with it.
Keep moving forward, bwillis. You're going to make it through this.
quote:Originally posted by bwillis: It always come back to "my LLMD" I don't have one. There are none within reasonable access to me, either by distance or finance. So I'm trying to work with my PCP and guidelines sent him by ILADS, so I'm in the dark about everything
I didn't mean to offend you. I don't know everyone's personal business here. (contrary to what some may think!! )
You choose to be in the dark, however. Read all you can about Lyme. You can orchestrate your own protocol and get well no matter what .. IF YOU TRY.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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posted
you might want to detox your liver and organs
with a good liver flush, the more dead bugs you
get out, the less toxic you will feel. Get
something like Ativan for the anxiety if it's
getting unbearable. The toxins are trying to
get out, make sure you don't get constipated
either, keep things moving and lots of water.
Use whatever means possible. Use milk thistle at
night before you go to bed along with a liver
cleanser like Jarrows or similar....it sucks
dude, been there, still am daily......
Posts: 208 | From Hudson Valley, New York | Registered: Mar 2008
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Yes bwillis, your questions need to aimed at how can I detox my body. Even detoxing the body needs to be done slowly. Yes, everything about this is SLOW.
I'm sorry to have to say this but there's not a magic pill (even 400mg doxy) that's going to make it better today, or tomorrow or maybe even next month. That's the reality.
This is so complicated. If it was all as simple as a 4 week supply of 400mg of doxy, no of us would be here.
I'm here and have been at this for 10 yrs. I was on doxy within 10 days of the "illness from hell" onset. My PCP even called it lyme and threw in the kitchen sink, including Z-pack, amox, ampicillan, etc in the beginning.
It does get better but more work besides doxy. I would bet lots of money that even 8 weeks of doxy isn't going to be enough?????
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6495 | From Louisville, Ky | Registered: Jan 2002
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