posted
4 months on abx and symptoms are not getting better. Daily headaches, extreme exhaustion, more pain down my arms and fingers. The lyme rage, anxiety and depression is brutal and very frightening. Is this normal? On Ceftin, Plaquenil, biaxin, and transfer factor-lyme plus. I do take breaks.
Posts: 597 | From Massachusetts | Registered: Mar 2019
| IP: Logged |
posted
I am so sorry you are not having any relief. I would suggest you call your doctor and see what she has to say. Maybe something needs to be switched or added.
Posts: 468 | From boston, ma | Registered: Feb 2018
| IP: Logged |
posted
I see her in a month so I'll ask then. I'm taking a long break this weekend and have been using the activated charcoal since Friday.
Posts: 597 | From Massachusetts | Registered: Mar 2019
| IP: Logged |
posted
never heard of that, Scott must of told you about it. I am so sorry you are feeling so lousy.
Posts: 468 | From boston, ma | Registered: Feb 2018
| IP: Logged |
posted
Yes, he did! I bought 2 bottles at the beginning of summer on Amazon. Very cheap too.Something you might consider when you start herxing and need a break? I'll give you a call in a few days.
Posts: 597 | From Massachusetts | Registered: Mar 2019
| IP: Logged |
posted
hang in there Kristyn. It will get better., please don't give up. Its early in the game.
Posts: 468 | From boston, ma | Registered: Feb 2018
| IP: Logged |
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
Kristyn
You are in the HARDEST part of treatment, the killing phase. It will be the hardest thing you will ever experience, but you will get through it. You will come out the other end of this nightmare of a disease. You must listen to your body, take breaks when needed, and STAY IN THE BATTLE.
Try to be calm, atmosphere should be quiet and drama free, supported measures in place, Epsom salt baths or foot baths, Glutathone, NAC, alka selzer, LOTS of filtered water to dilute the terrain, soft surroundings, your favorite music, baby your body.
Put yourself FIRST. . . everything else HAS to wait. No apologies. People that don't understand, toxic people, deniers, medical providers that don't help MUST be elimated from your world.
Healing is a journey. Start a journal and write down daily symptoms. Place a β€οΈ sticker on good days. Slowly you will notice your β€οΈ stickers starting to pile up. You will SEE all your hard work paying off. I believe you will be seeing these positive changes coming soon.
Supportive people around you is SO important, friends, neighbors, support groups, Lymenet. We need to vent about Lyme and company in the beginning because we don't understand what the hell is going on. Just know you are not alone and many will help you. This is a life changing disease. We are all in this together. Healing wishes. πππππ
Posts: 2977 | From Florida | Registered: Nov 2016
| IP: Logged |
posted
I can't handle it anymore. It's literally ruining my life and the ppl around me, so I'm stopping treatment and moving on.
Posts: 597 | From Massachusetts | Registered: Mar 2019
| IP: Logged |
Bartenderbonnie
Frequent Contributor (1K+ posts)
Member # 49177
posted
This is not the REAL Kristyn talking right now. It's the pathogens and the toxic die off causing you to feel this way. This can happen when treatment is too aggressive.
Please call your LLMD and explain you need help, you are not in a good place and are sufferering unbearable symptoms. No one who experiences severe die-off herx's should continue!!!
There are other ways to get better. Different treatment protocols. There is no one size fits all for Lyme. What we do know is that you are feeling terrible and this should be addressed by your LLMD today.
Your LLMD will have the answers and will be able to make you feel better. But you must tell him/her what is going on.
Posts: 2977 | From Florida | Registered: Nov 2016
| IP: Logged |
posted
Even when I'm not herxing I'm like this, so I its not (or is more than lyme). I've exhausted too many things.
Posts: 597 | From Massachusetts | Registered: Mar 2019
| IP: Logged |
posted
I just tried to reach out to you. Please call Dr. H now. She will help you, stop the meds today and take a break. It is lyme. It will get better.
Posts: 468 | From boston, ma | Registered: Feb 2018
| IP: Logged |
i so totally get what your saying. i'm also in battle as i've been killing a yeast infection for 11 weeks and i'm sick as hell and haven't even gotten to lyme yet. Now think about how bad that is and ask yourself if you want to repeat this over and over? This is my 4th time on an anti-candida diet trying to get to the other side. Your only way out of this is through...the reason so many of stay sick is we quit when the going gets tough and then this ordeal drags on and on.
take a second and separate the emotion... then think of the science of what your doing? does it make sense your miserable? it does to me. I hope it doesn't take you 4 or more times to learn this over and over like many of us.
Convince yourself today that this will take a long time, don't expect a miracle and then ask yourself if your doing everything you can? it sounds to me that your are...
i am not quitting my regime this time and i am sick as all hell. Lyme brain up the wazoo..
i'm repeating myself but don't take years of learning to realize only way out is through...stay the course. do as much detox as you can....coffee enemas as gross as they sound have been tremendous help.
Dave
-------------------- On my journey to wellness - One day at a time. Posts: 989 | From NJ | Registered: Sep 2008
| IP: Logged |
posted
Kristen, it is worth treating so you can feel better.
My LLMD recommends the activated charcoal. It's a good detox product.
The trick is find out what we respond to best. Perhaps you could consider contacting your doctor now instead of waiting a month.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
Brussels
Frequent Contributor (5K+ posts)
Member # 13480
posted
Sometimes, abx can make you feel bad and I think they can be very damaging (my opinion).
I decided never to take them again, if I can find other alternatives. Too many bad side effects, it is not worth.
And if you read Buhner, he recommends only short term antibiotics, never many months of antibiotics.
The reason why is stated in any of his books concerning pathogens.
The problem is not only for lyme disease. Any chronic infection follows the same pattern: antivirals long term are a MUCH poorer choice than a combo of herbs, according to him.
I'm reading his book on viral infections. It's almost a COPY-PASTE to his lyme books, to Herbal Antibiotics.
Drugs do not work long term. His opinion, not mine.
I follow my gut: my gut says 'get off abx, they damage more than cure'.
It's been about a decade without abx, practically. About 5 last years without a single pill.
My whole family takes practically no drugs. Hubby does, when he's got his gout attack.
My daughter is also drug free (despite having suffered from the most awful infections as a small child).
Not even after bad interventions in the mouth, surgeries included. We take no drugs, and that is backed up by my doctor.
I use homeopathy instead and herbs, and some devices sometimes to support healing. That's about it. Never have had much trouble with them, like I did with drugs.
Of course, this is personal. Just drop the drugs, and find more intelligent approaches, that are more encompassing to chronic diseases. Buhner is a good start.
Posts: 6199 | From Brussels | Registered: Oct 2007
| IP: Logged |
posted
Thanks everyone. This week has def been one for the books. Did a phone appt with my LLMD lastnight, she was very concerned and told me to stop the antibiotics. I see her again in December and we will go from there, discuss possible injections . I'm very discouraged. Not trying to feel sorry for myself but its been absolute hell trying to balance everything. I graduate from school in 2 months. Really scared itll be tough going back out in the work force. Just really scared for the future.
Posts: 597 | From Massachusetts | Registered: Mar 2019
| IP: Logged |
posted
Yes Robin I am taking activated charcoal. My LLMD agreed
Posts: 597 | From Massachusetts | Registered: Mar 2019
| IP: Logged |
kidsgotlyme
Frequent Contributor (1K+ posts)
Member # 23691
posted
Kristyn, I am so sorry for your suffering. I think that we can all say that we have been there at some point. I'm so glad you called your doctor.
While you are waiting for further treatment, I hope that you will take this time to clean up your diet, find ways of coping with stress, get some good detox measures in place, and just try to be kind to yourself.
Yay for graduating in two months. That's wonderful news.
-------------------- symptoms since 1993 that I can remember. 9/2018 diagnosed with Borellia, Babesia Duncani, and Bartonella Hensalae thru DNA Connections. Posts: 1470 | From Tennessee | Registered: Dec 2009
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/