Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
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.
janice victorov
Frequent Contributor (1K+ posts)
Member # 22937
posted
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.
-------------------- jkv44 Posts: 1247 | From virginia | Registered: Oct 2009
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surprise
Frequent Contributor (1K+ posts)
Member # 34987
posted
Maybe try herbal protocols for now, not push yourself with aggressive exercise at this point.
Also, look at adrenals.
Sending you good thoughts---
-------------------- Lyme positive PCR blood, and positive Bartonella henselae Igenex, 2011. low positive Fry biofilm test, 2012. Update 7/16- After extensive treatments, doing okay! Posts: 2518 | From USA | Registered: Nov 2011
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CD57
Frequent Contributor (1K+ posts)
Member # 11749
posted
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).
Posts: 3528 | From US | Registered: Apr 2007
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Ellen101
Frequent Contributor (1K+ posts)
Member # 35432
posted
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.
Posts: 1748 | From United States | Registered: Dec 2011
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posted
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.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
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.
-------------------- "Yeah, I miss me too." Posts: 234 | From NY originally registered in 2008 | Registered: Nov 2012
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
I would go after parasites.
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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posted
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.
Posts: 463 | From Sandusky, Ohio | Registered: Jan 2012
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lax mom
Frequent Contributor (1K+ posts)
Member # 38743
-------------------- I'm not there yet but I'm closer than I was yesterday.---- Lyme Band 31,41,58. Being treated for Lyme and Bartonella. Posts: 149 | From Maine | Registered: Oct 2010
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posted
I'm thinking what Al is thinking. POTS.
Posts: 845 | From Northeast | Registered: May 2011
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Agree with Catgirl 100%. Go after parasites!!!! It has been the missing link for many.
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
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.
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
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.
-------------------- -Razzle Lyme IgM IGeneX Pos. 18+++, 23-25+, 30++, 31+, 34++, 39 IND, 83-93 IND; IgG IGeneX Neg. 30+, 39 IND; Mayo/CDC Pos. IgM 23+, 39+; IgG Mayo/CDC Neg. band 41+; Bart. (clinical dx; Fry Labs neg. for all coinfections), sx >30 yrs. Posts: 4166 | From WA | Registered: Feb 2011
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posted
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.
-------------------- Lyme, Bart, Babs D, FL1953 I am just sharing my thoughts and experiences - I'm not a medical professional. Posts: 69 | From Midwest | Registered: Mar 2010
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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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