Topic: Paralyzed When it Comes to Treating Anymore
seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
Lately, I have had some significant difficulties with all my treatment. I feel like I'm at the point of nowhere and it's a bit hopeless. I've been on this board for over three years now and watched many get better while I went nowhere fast really.
I can't seem to get motivated anymore to take my drugs because of a complete lack of confidence in what I truly have. I feel like all doctors are just guessing and really have little to nothing to back up their ideas. Lyme docs included.
I have not been able to drive myself around anywhere much for 3+ years. I'm getting really frustrated. I'm wondering if I should just toss the towel in.
My wife is mad because she says I don't want to get better and if I just take my Abx all will be fine. I figure I've taken many, many doses of Biaxin, Ceftin, and others and never made any lasting progress.
I'm so jittery day to day that I can't get around. I tried driving a mile or two the last three days and literally was trembling behind the wheel. I'm so messed up it isn't funny. Terrible head pressure most of the time. Internal shaking. Eyes blurry and sensitive to light. Bad neck stiffness. I am absolutely unable to get around in public myself w/o horrendous anxiety. It's getting worse I realized.
I've heard all the crap: Lyme, Bartonella, Babesia WA-1, Mycoplasma, Acanthamoeba Infection, Candida, EBV, Cold Agglutinins, parasites, roundworms, tapeworms, and more and more. There's no end to this.
It's getting harder and harder to wake up everyday knowing this 'prison' (my four walls of my home) is my destiny.
My LLMD wants me on Amoxicillin and Probenicid along with Artemisinin and Bar-1. I'm on Bar-1 right now (10 drops per day). What difference does it really make taking the other stuff? I've failed on Malarone, low-dose Mepron, Coartem, Daraprim, and more.
Something in my gut tells me I'm treating the wrong thing completely. I don't know why, but.... Maybe the IDSA is right and I'm just a mental case and treating all the wrong stuff. How do we really know?
I definitely get more ill on wet days. It was wet out and all of a sudden today my heart starts beating fast at 110 BPM. Head gets pressurized. Fatigue sets in.
I guess I should just pop the pills because who really cares, right?
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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glm1111
Frequent Contributor (5K+ posts)
Member # 16556
posted
Seek,
I feel so bad for you and I hear what you're saying. This is a very frustrating disease to try and get on top of.
I know you said you were going after the parasites, but i am just wondering if you did so on a regular basis like you take your abx.
Since you tested positive on some tests for worms, and you feel that something in your "gut" is telling you that you are treating the wrong thing, maybe you should listen. Did you ever try the Parastroy? I really don't mean to irritate you with this scenario, but it sounds like you are at your wits end, and I am concerned about you.
Did you see the info that GiGi posted recently about the conference Dr. K. did with some other LLMDs and they concluded "Getting rid of the Parasites is first and Lyme is Secondary?
Sorry you are suffering,and hope you will find an answer and a way out of this nightmare soon.
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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karenl
Frequent Contributor (1K+ posts)
Member # 17753
posted
internal shaking is parasites Listen to Gael but also add biltricid and RO 5081 from Zhang. You need to start here then my question: helicobacter pylori is now said to be in connection with trembling? Are you tested? For some people this makes a big difference. Also VSL #3. Pm if you need more I am not rechecking the posts.
Posts: 1834 | From US | Registered: Oct 2008
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GiGi
Frequent Contributor (5K+ posts)
Member # 259
posted
Consider treating parasites. They are more destructive than much else I can think of.
Take care.
Posts: 9834 | From Washington State | Registered: Oct 2000
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I understand how you feel. Progress has been hard won for me too but giving up and doing nothing is not an option unless you don't mind getting a lot sicker.
You must keep looking for the pieces of the puzzle that fit *your* case. You may need to take an antidepressant for awhile or try other things that help with depression while you keep unravelling this mystery.
I know you've been here for awhile so you have already read about the many issues that can affect ppl with chronic lyme so I won't repeat it here.
One thing that jumps out at me is mold primarily because you feel sicker on wet days. Perhaps you need a biotoxin binder to get rid of mycotoxins or maybe you need an antifungal.
I just had a number of months when I felt better but this is after years of treatment. During that time I had 2 surgeries on my finger and months of therapy but the fact that I could manage all of that without feeling horrible is nothing short of a miracle.
Never give up, you *will* find the right combination of treatment for yourself. I really believe that for me the mold issues, methylation issues, parasites, heavy metals and several other things + lyme treatment have helped me a great deal. Unfortunately some of us need to add many things before we see the results.
BTW - my LLMD told me that he associates internal shaking with lyme.
Wishing you the best, Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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lululymemom
Frequent Contributor (1K+ posts)
Member # 26405
posted
Have you taken any significant time off from your abx treatment? My daughter didn't start improving until 2 months after she stopped. She said the entire time she was on abx, she did not feel as good as when she went off.. Maybe it's time to take a break...
Bartonella henselae 1:100 Posts: 2027 | From British Columbia | Registered: Jun 2010
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CherylSue
Frequent Contributor (1K+ posts)
Member # 13077
posted
Hey Seek,
Who's you LLMD? Maybe, you need to find a smarter and more intuitive one. I'm on my second LLMD, and I know we shared my first one.
If I were going to see another LLMD, I'd see Dr. H in New York.
Keep trying all the treatments. Everyone has their own infectious soup. I got better to 90%+ and then relapsed again in April. It's a long climb up again, but abx are the only thing that even worked for me. I know exactly how you feel because I've been there many times. Keep relapsing and getting better and then relapsing. Very demoralizing, but my LLMD has many tricks up her sleeve. Lots of homeopathic, abx, and supplements out there to try. And some DO help.
Find a better LLMD who has more experience and intuition.
Hang in there, Seek.
CherylSue
Posts: 1954 | From Illinois | Registered: Aug 2007
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TF
Frequent Contributor (5K+ posts)
Member # 14183
posted
Seems to me he IS seeing Dr. H.
Posts: 9931 | From Maryland | Registered: Dec 2007
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map1131
Frequent Contributor (5K+ posts)
Member # 2022
posted
Seek why not do what gigi suggested. Finding another LLMD is no easy matter.
Can't just pick up the yellow pages and look for LLMD. But you do live in The Twilight Zone and maybe there is a full page of LLMDs begging for patients.
Sorry, little humor there. Searching Gigi posts will give you something to focus on and order the stuff you need to kill some parasites.
Maybe put what little focus you have into one thing and go for it with all you have. Then maybe abx might help you with bacteria?
Don't give up. That's not an option.
Pam
-------------------- "Never, never, never, never, never give up" Winston Churchill Posts: 6478 | From Louisville, Ky | Registered: Jan 2002
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sparkle7
Frequent Contributor (5K+ posts)
Member # 10397
posted
I agree with Gael & GiGi... I felt the same way as you did. It's not always Lyme. Sometimes the doctors are wrong.
I'm feeling alot better. I was ill for 16 years. Try the anti-parasite protocol & stick with it. I'm not trying to tell you what to do but if the abx are not working - taking more & more won't help.
Maybe you need to try something different?
Posts: 7772 | From Northeast, again... | Registered: Oct 2006
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I still have failed to hit parasites hard. It's been hard to keep going at it. I tried Mebendazole for two three day courses and got very, very ill. It was scary. I posted about it before. Either it was a bad drug reaction or serious die-off.
There's much I haven't done. The biggest roadblocks have been fear and a need to function at some level to preserve my ability to work part-time when able. Feeling useful has been the only thing that keeps me afloat.
I have zero access to the drugs GiGI recommends. I believe it's a good idea. If I could afford or access Dr. K, I'd be there in a heartbeat. I'd do anything to hear what he says about my issues.
Karen, I have tested negative for H. Pylori several times.
Carol, I have taken some magnesiuum, but never IV. Again, no access to it. My last RBC Mg test was actually above normal. I've taken oral doses of 1,000 mg a day w/o success.
Today was a nice day w/low humidity and no dampness. Felt much better. Interesting.
I stopped seeing Dr. H's office a while back. I know what you're saying CherylSue.
Lulu, took a six month break from Abx. No help. By the end, I got pretty ill. I can't find the pattern of what helps/hurts. It has been impossible.
The one thing I still have not done is aggressive multi-Abx treatment because just when I was going to, I came down with possible C-Diff (most likely wasn't). Dr H's PA pulled the plug and I got nowhere from that point. I was off Abx for six months.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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posted
Seek can you send me pm about your home, size style age # of bathrooms as much as you can. I may have an idea about mold issues and where to look. I am not a duck but I am a house doctor, i might be able to pin point things.
-------------------- Help I am being forced against my will to learn medicine!!! Posts: 164 | From WASHINGTON | Registered: Jun 2011
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