I apologize for another desperate sounding post. I am so sick this week. If I didn't know it was Lyme, I'd be very scared that my body is just completely shutting down.
I've been on the verge of fainting and have fainted several times this week. Sometimes my BP is low 85/45 and other times it's fine 110/60. I'm incredibly weak and if I were to lie down I probably wouldn't be able to move for the rest of the week.
Rest makes things so much worse. I went OFF several abx recently and the ones I kept I've taken very long term so this isn't a herx or side effects.
I've tried CoQ10, ginseng, salt sugar, licorice root, etc. I'm resorting to 8-10 diet cokes a day just to stay alert and I know that's not healthy because it drastically lowers my appetite too but I'm running out of alternatives.
Posted by OtterJ (Member # 30701) on :
Summer, get your adrenal hormones checked. Tell your doc you need to get your ACTH checked
(produced by pituitary to stimulate the adrenals to produce cortisol--a daily necessary function
for life) and get your cortisol levels checked. Lyme is a big endocrine disruptor and loves,
loves, loves, cortisol and will not share your natural supply of cortisol with you. This can be
life threatening. Go back to you llmd or nd and get this checked out!Common signs of adrenal
dysfunction are BP issues, nausea, you want to become one with your couch, just getting up to
get a cup of tea makes you feel tired.
Posted by Keebler (Member # 12673) on :
- Sadly, diet soda can damage so much in the body, including nerve fibers all over, the kidneys, the liver and adrenal function. And more. It's very neuro-excito-toxic.
I understand the pull for you just know that it's about as hard on your body as drinking gasoline might be, it's just that it won't be such an immediate clobber. You really need your kidneys and liver, and nerve cells. I hope suggestions below are of help.
In addition to assertively addressing all involved infections:
[ 07-15-2013, 03:15 PM: Message edited by: Keebler ]
Posted by seibertneurolyme (Member # 6416) on :
I know you don't want to hear it again -- but the meds you stopped all work on babesia. You have gotten sicker off those meds. Loss of consciousness and seizures can be neuro symptoms of babesia.
Hubby started with fainting spells once per week, then it went to daily within a week or two, then it went to daily seizure-like spells, then progressed to multiple times daily seizure-like spells. And all that time he was on either oral or IV Ativan.
This went on for a couple of years before he even got any antibiotics. Then he did 2 months of IV rocephin -- no significant change to seizure-like spells. It was another year before he got any babesia treatment.
Initially the babesia treatment which was not aggressive (low dose quinine and clindamycin) gave him much more energy -- he started walking a mile a day and even doing push ups after no real exercise for at least a year. But it took many more years before the seizure-like spells went away -- more lyme meds and aggressive bart treatment did not help -- only aggressive babs treatment worked.
Yes, you probably do have some adrenal fatigue -- but that will take time to correct with nutritional supplements and herbs. Aggressive babesia treatment should make a difference within a month if that is the problem. Lowering your pathogen load will also help relieve stress on the adrenals.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posted by Summer3 (Member # 35286) on :
Thanks. I've done aggressive babesia treatment in the past and fairly long-term. I did the double dose of Mepron and the normal dose. I am not able to take that any more because it raises my liver enzymes and I can't afford it. Even when I was on the 3 abx that I dropped I was not feeling much better. I've been extremely sick and weak for the past several months. My adrenal testing came out okay.
The only thing that is coming back abnormal for me is a low CD57 (lower than before I started treatment) low lymphocytes, and mild hypothyroid (3.4 TSH and flagged 0.8 Free T4).
Posted by Lymetoo (Member # 743) on :
I think it's babesia too.
You are poisoning yourself with diet cokes. Aspartame is really bad for you, esp neurologically.
If you feel you have to have caffeine, go with tea or coffee.. even green tea.
Posted by Jane2904 (Member # 15917) on :
Just a thought... How long have you been taking the armour?
DD had to stop as it made her feel very weak and faint. She was only taking a tiny, tiny dose.
Hope you find some answers and feel better.
Posted by Summer3 (Member # 35286) on :
I've been on Armour for 8 weeks but only 30mg. Just had my thyroid re-checked but I won't have the results for a while. I wasn't feeling well before the Armour either. I had about a month where I was less weak getting up in the morning than usual and I think that was from Armour, but as usual that improvement ended.
In regards to the diet coke. I know it's really bad but right now I don't have a choice. It's only a matter of time before I am unable to prevent fainting in public. I've asked my doctor(s) about something I can do to prevent it and I've tried the suggestions (salt water, eating something, licorice, ginseng, etc., but they don't work. No matter what I do or take I don't get improvement (in an overall sense).
I've only gotten very temporary improvement (4-7 days) within the first few weeks of starting a new antibiotic a handful of times. The improvement always ends and I go back to this..........my baseline level.
Posted by Bitten in Bergen (Member # 34067) on :
I, too, was feeling completely weak recently - that was after 8 months of mepron+zith, then malarone.
I also have low bp and orthostatic hypotension, heart palps, and heat intolerance.
I recently switched llmds and am on vitalguard supreme and mc bab-2 (started at only 5 drops per day). Pulsing one day of liposomal artemisinin per week.
It's only been a few weeks, but I am much less weak than I was before, and I am napping far less.
Today I was surprised that it took a while for me to be overcome by the 95 degree heat today - this is a definite improvement. In the past, this would happen at much lower temps.
Also taking liposomal glutathione.
Posted by Catgirl (Member # 31149) on :
Summer is really hard on babs patients. My bp drops low like yours and I get really weak if I don't get enough water.
Cryptoleptis?
Posted by ladycakes (Member # 12619) on :
Have you seen a cardiologist?
I had a lot of trouble with weakness, dizziness, and while I hadn't blacked out I had a few close calls with it.
It turns out that my heart rate has been, in general, much much too high. He ran a bunch of other tests that thankfully came back normal, so there isn't anything structurally wrong. But some combo of having Lyme and being deconditioned from being sick had my heart rate going haywire, which can cause fatigue, dizziness, and weakness.
He put me on some calcium channel blockers, and I feel infinitely better.
Posted by Summer3 (Member # 35286) on :
No. I haven't seen anyone since I started with my LLMD. I do have heart issues that run in my immediate family, but I'm in my 20's and low risk for heart problems in terms of lifestyle risk factors.
Posted by Bitten in Bergen (Member # 34067) on :
Seeing a cardiologist is sometimes important, especially if you're taking any meds that can prolong the QT interval (zithromax, diflucan, paxil, etc.).