No matter what I do nothing improves. I went off two more meds yesterday. So I'm down to mino/plaquenil/biaxin/armour.
I think I can maintain on those. What's upsetting me is whether I'm on 7 or none, nothing improves. I have a massive headache today, I've been up all night. I was woken up by the headache, restless legs/anxiety, sweating and dizziness like hypoglycemia etc. I've only missed two doses and things were bad before I cut the meds out. I don't think that's what did it.
Yesterday I nearly collapsed/fainted in a driveway. The day before I tried to go swimming and developed nearly instant hypothermia and I keep losing the feeling and strength in my limbs. Sometimes I can't even walk or hold up a utensil. I can't do this anymore. I'm so tired............
Regardless.........I'm pretty much out of options right now. Financially anyway. I'm not herxing. I've been on all of these meds long-term. This is my constant symptom level. When I'm off things, it gets even worse.
I'm NOT suicidal, but this is pushing me emotionally. There are definitely times that I wish I would never get up again. The past few weeks have been like that.
Posted by janice victorov (Member # 22937) on :
Listen... I know how u feel. It feels so hopeless at times.
Maybe a different set of eyes can help. A new Llmd? I know how expensive it can be as I am a single mom with a college age daughter.
R u detoxing? Eating no sugar? Low carbs? Water? You sound tired.
Rest. If. Can help, plz pm me. Posted by surprise (Member # 34987) on :
Maybe try herbal protocols for now, not push yourself with aggressive exercise at this point.
Also, look at adrenals.
Sending you good thoughts---
Posted by CD57 (Member # 11749) on :
I posted a similar post today and have to wonder if there's something else going on for both of us?
At my next appt I'm going to ask them to start looking at other things. Antibiotics give a palliation/anti-inflammatory effect so I think we feel those. I don't think in my case they are killing anything.
At the very least get the cytokines down so you feel better, as per Buhner protocol (new).
Posted by Ellen101 (Member # 35432) on :
It may be time to look at other issues that may be causing your symptoms. M LLNP likened it to a pot sitting on the flame on a stove. Lyme may have ignited the fire, but now there are other issues involved that needed to be treated in order for the flame to go out. To keep going after the lyme which may no longer be the issue may do more harm than good.
Have you had testing for food allergies, candida? Could you be suffering from leaky gut? How about your CRP and sed rate are they elevated? If so you could have systemic inflammation which needs to be reduced.
Posted by faithful777 (Member # 22872) on :
Do you have coinfections? Sometimes they can really make everything so much worse.
Is it time to try another LLMD?
Do you have an integrative holistic doctor that can treat thyroid, adrenals and hormones? All those thing out of whack can make you feel so much sicker.
I have been where you are, many times. Seek another doctor if you are not improving. I did and I did get better, it just took time.
Posted by seibertneurolyme (Member # 6416) on :
Have you tested or treated for babesia? It almost sounds like a laundry list of babesia symptoms.
And, yes adrenal fatigue is a real possibility -- not everyone gets POTS from that.
If your symptoms come back so quickly with reducing meds then it is probably a coinfection or something else besides lyme that needs to be addressed.
Bea Seibert
Posted by daphnesmom1 (Member # 39433) on :
Might I suggest that you be tested for food sensitivities if you haven't already.
Symptoms of these can mimic what we know are lyme and co infections symptoms. How about Parasites? Or yeast.
I have been in your situation and at some point we do have to explore other things that my be causing our symptoms.
I am sorry you feel so miserable. I have felt like throwing in the towel on many occasions.
Posted by Catgirl (Member # 31149) on :
I would go after parasites.
Posted by jlf2012 (Member # 36002) on :
I could have written the same exact post Summer. I pray for relief and healing for you and all of us. You're not alone in how you feel.
Posted by lax mom (Member # 38743) on :
I'm thinking what Al is thinking. POTS.
Posted by glm1111 (Member # 16556) on :
Agree with Catgirl 100%. Go after parasites!!!! It has been the missing link for many.
Gael
Posted by Summer3 (Member # 35286) on :
I think it could be heart related. I thought my palpitations were from caffeine, but they seemed to get worse when I stopped drinking it.
Posted by Razzle (Member # 30398) on :
Adrenal + parasites...very possible.
Caffeine is a stimulant and a blood vessel narrower...this may help those with POTS. But there are better ways to do this... E.g., Cayenne pepper normalizes blood pressure.
Posted by RC1 (Member # 31923) on :
My LLMD had me quit coffee, I felt terrible the whole 6 weeks that I quit. Figured it must be POTS.
The day I started back on 1 cup a day, and lots of salt, I felt better.
Posted by delljen (Member # 25090) on :
Your symptoms sound like what mine were when I was experiencing adrenal exhaustion as a result of lyme and co-infections combined with being very toxic from treatment.
Treating my adrenals (low dose cortef) was a a HUGE help for me.
quote:Originally posted by faithful777: Do you have coinfections? Sometimes they can really make everything so much worse.
Is it time to try another LLMD?
Do you have an integrative holistic doctor that can treat thyroid, adrenals and hormones? All those thing out of whack can make you feel so much sicker.
I have been where you are, many times. Seek another doctor if you are not improving. I did and I did get better, it just took time.
I'm totally with Faithful. I, too, have been in the same position - I am on my third LLMD. It is only now (almost 2 years) that I am finally on what (I think) is good protocol that addresses all of the coinfections, as well as any other non-infection health issues. My doctor is treating me as a whole patient and not just the lyme.
LLMD is also treating me with detox support, biofilm agents, gentle chelators, and binders.
For the first time in 20 years, I am finally starting to feel a bit better.
Trust your instincts and seek out the care that you need and deserve. It is possible!
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