Im getting a lot worse.. Afraid one of these days I'll complett lose my ability to walk. Going to call my LLMD monday to see if I can get in to see her again sooner
But since im already getting worse during the day, the last thing I need is endless insomnia. I tAke melatonin, trazadone, and gabapentin and I am not sleeping AT ALL. Yet so exhausted.
Any of you who battled insomnia is there anyyhing that helped you? Thanks.
Posted by Lymetoo (Member # 743) on :
I would go back and start over on your supplements. You started getting worse after beginning them. Start over and take one at a time so you will know which one is making you feel worse.
Gabapentin can cause plenty of problems on its own .. then add trazodone .. and well...
For insomnia, Ambien works the best for me. I also take melatonin.
Posted by Robin123 (Member # 9197) on :
Have you tried taking benadryl? 25mg worked for me for years, and then I upped it to 50mg as needed.
Also, have you tried valerian?
Re your walking inability, is that due to spasming muscles?
Posted by Semia (Member # 46837) on :
Thanks guys .. No I haven't tried Benadryl maybe I'll give that a try.
Robin-- my walking ability is bc of the weakness and terrible pain in my knees basically feel like I'm 95 and should be using a walker.
Posted by Brussels (Member # 13480) on :
I would add loads of binders like MSM, chlorella, whatever during the whole day.
I wonder how can you guys take so many drugs!?
For me, it is so clear that drugs only mask the symptoms, and NEVER EVER go to the source of the problem.
I don't even take aspirin, as I know it causes me tummy pains and that it is masking a symptom!!
I also didn't know about herxes as a beginner. Taking killers (herbals), until I could no longer walk either. No longer take shower, no longer be functional.
Until one day, finally, I got whole body paralysis, unable to breathe. I was sent to ER, and that was scary, as the only thing I could move were my lips to ask for help.
The day I learned that ALL THAT was caused by excess of toxins, that was the last day I ignored toxins!
With toxins, I can't sleep, as I have not only insomnia, anxiety and tinnitus but I have night terrors. The night terrors can be any time, during the day, almost when I'm barely asleep. I'm in between being awaken and fast asleep and those night terrors would come.
No way to sleep.
I take LOADS OF BINDERS (by spoons, sometimes, or handful) and everything fades. Insomnia goes, breathing problems goes, heart problems goes, fatigue goes, anxiety goes out. I get energy to move, my head gets clearer, I'm a person, not a sort of a junkie ghost.
Whatever, I know that people who take pharma drugs get used to them and are only able to think in terms of next chemical to take to mask the symptom (not in terms of what is causing the problem).
Of course, it is MUCH harder to think about reasons and causes for our problems (which usually are multiple) then simply to put bandage on a leaking tap and keep changing the bandage forever.
That is just my opinion, sorry if I am too harsh.
If you had to take care of babies and small kids with lyme and encephalitis, you would know that DRUGS long term are OUT OF QUESTION, if we want them to come back to society and be healthy long term.
You bet that kids with lyme and infections cannot sleep either!!
Posted by Semia (Member # 46837) on :
Thank you brussels. This is probably a stupid question but what are binders ?? Where can I get them ?
Posted by TF (Member # 14183) on :
Semia, rather than call the doc and ask to come back in, I suggest you call and tell them what is going on. Then, the doc will have someone call you back in a day or so with instructions on what she wants you to do.
This is what we do if there are problems in between monthly appointments. No sense paying for an appointment if you can get advice by phone.
I agree that you need to stop everything she put you on and then start one thing at a time. Wait 3 or 4 days before starting something new.
The insomnia from lyme is truly a killer. Hopefully, once you get on a few lyme meds, it will be a thing of the past. Once my doc put me on amoxicillin plus flagyl, it just disappeared for me.
Regarding binders, these are supplements you can take that help remove poisons from the body. Many folks who get extremely sick with lyme have trouble detoxifying (removing these poisons from their bodies). It is a genetic problem. So, they take binders to help them.
So, look up detoxify and binders and you will learn a lot. For example, see p. 13 of Burrascano, "BORRELIA NEUROTOXIN." He talks about binders to remove these poisons that the germs leave in our bodies. The ones he names are prescription meds. Just know that they cause constipation and it can be BAD!!! One person had to go to the ER.
As the poisons build up in the body, you feel worse and worse. As you clear them out, you feel better and better.
So, if you ask your doctor about adding a binder and/or you decide to do that, start very slowly and take laxatives to offset that effect.
The toxins (poisons) bind to the binder and are removed from the body in the stool.
People with high cholesterol may be given binders that will bind to the fat in their food and carry it out in the stool.
There are lots of threads on LymeNet about binders. Just use the "search" function (near the top of the page) to find what others have suggested.
Posted by Catgirl (Member # 31149) on :
IMO, trazadone and gabapentin are not the answer but that's just me. Most lyme patients have sleep issues and adrenals are often the problem.
Have you discovered muscle testing yet (youtubes)? I'd be lost without it. If I feel like I won't be able to sleep I just get up and muscle test to find what and how much I need. It's quick, simple and so worth it.
Some nights I need something just to even out cortisol, and sometimes it's just melatonin, valarian or L theanine (and more). I have 4 or 5 bottles of stuff I keep on our dresser and just muscle test them all. It take 2 minutes. Sometimes I need more than the bottle says (check with your doc).
Your doc could do a saliva test on you for cortisol levels too. If you knew how to muscle test though (or find someone who does), you would know the answer immediately.
Also, meditation helps.
Posted by Catgirl (Member # 31149) on :
I forgot to mention coffee enemas. They will help you detoxify like nothing else. You will feel SO MUCH better in 15-20 minutes. I tried absolutely everything else and nothing works as well as they do.
- gabapentin made me unable to walk. -
Posted by Lymetoo (Member # 743) on :
Regarding pain:
Curcumin 3 times a day helps me. I also avoid eating foods high in oxalates, like spinach, potatoes, etc. Google it.
Posted by Semia (Member # 46837) on :
All great advice. Thanks so much everyone !
Posted by Lymetoo (Member # 743) on :
![[Frown]](frown.gif)
basically feel like I'm 95 and should be using a walker.
![[Smile]](smile.gif)