Topic: At what point do you start worrying about progression?
Summer3
Frequent Contributor (1K+ posts)
Member # 35286
posted
I'm starting to get really worried as I've been on lots of combos and I don't get any better. I continue to get weaker. The only time I ever get any relief is after a glutathione IV, and I am VERY thankful that those are still working for me even if it's only for a few hours.
I feel like something is really wrong lately, but my labs (particularly liver function which has always been really abnormal) are normal for the first time ever even though I feel absolutely terrible. My weakness is very scary sometimes. I am worried about never getting better and possibly dying from this.
I hate to sound so morbid. Maybe it's the Rifampin or the new meds Cortef and Florinef talking........I don't know.
Lately I've been so weak and it feels like my heart is not beating fast enough or something. I can't explain it. My heart is technically okay, I'm monitored every week. I don't know, I guess I'm just worried that nothing will ever work and I'll keep getting worse.
Sorry to hear about your current situation. I know for me I've been able to tell whether a treatment/protocol is working rather quickly, but I just may be one of the lucky ones.
I know you've probably thought about this a million times, but have you considered discussing other possibilities with a doctor? Like things other than lyme, in addition to lyme, or another condition caused by lyme?
I've always believed that if we are doing everything we can to get better, but we are still not getting anywhere then there is something we are missing. I would be exhaustive in your search. Don't get locked in on just "lyme."
Lastly, a simple suggestion... Listen to your body. I feel like some people forget the goal of treatment is to get better. You want to feel better. If something is making you sick, don't do it! Don't try to outsmart yourself.
Best of luck, everyone here is pulling for you!
Posts: 169 | From The Poconos | Registered: Jun 2011
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Summer3
Frequent Contributor (1K+ posts)
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posted
Thanks Pony, I am worried it could be something other than Lyme and I have asked my doctor. Fortunately he focuses primarily on conditions other than Lyme so I don't worry too much that he will blame everything on Lyme if he thinks something else is going on.
He definitely looks into things every once in a while but the only abnormal tests results I've had are related to Lyme and co-infections, a very low CD57, and abnormal liver enzymes (that are okay now).
I just started trying to take the adrenal stuff hydrocortisone and fludrocortisone but I don't think it's helping. I don't know if that is something that takes a long time to feel results from or what.
I don't feel like the treatment makes me sicker. I get very sick off treatment as well. Off treatment is when I am losing consciousness, having seizures and having massive headaches. I am not any more energetic off meds either. Herbs have absolutely no effect on me. I don't herx on them and I don't improve on them either.
posted
Is there another reputable LLMD in your area?
Posts: 814 | From Somewhere | Registered: Nov 2010
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Summer3
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Member # 35286
posted
Yes, I've consulted with several. I am not able to afford IV's (and there is no guarantee that it will work either) so I've been avoiding that even though several LLMD's have suggested it is likely the next step.
I have a hard time figuring out if I'm getting worse or just having endless herxing.
Razzle
Frequent Contributor (1K+ posts)
Member # 30398
posted
Sounds like a detox issue... Are you detoxing regularly? Using binders?
And yes, the adrenal support stuff may take up to one or two weeks to work if you are on a low dose.
-------------------- -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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Maya12
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posted
Hey summer how long have you been treating for?
Posts: 1632 | From Canada | Registered: Feb 2012
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Catgirl
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Member # 31149
posted
Summer, I am feeling really bad now too. I have also tried the glut IVs (and glut pushes). I think they are making me worse though. They do give me some benefit, but at what cost (I wonder)?
The first time I tried one of them, I felt fantastic. The next time, good--and the next time I got depressed and started to herx.
Then I had two glut IVs after that which caused more depression, herxing and I ended up feeling even worse.
I read somewhere about glut being bad for people with protomyxzoa. My lyme brain can't remember where though. Maybe this is something to consider (I need to test for this too).
I am also chelating though. So maybe that has something to do with it. Are you chelating too?
My gut says it's the glut though, and possibly the protomyxzoa connection. I can't wait to see my doc and find out what's going on.
-------------------- --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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Maya12
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Hey guys if you have kpu this can also make gleutithione intolerable, I do have confirmed kpu and I got a gleutithione Iv and felt so depressed for like a week after that , there is an article written by the better health guy about kpu and it talks about how detox things like gleutithione can make a person with kpu worse until the kpu is corrected
Posts: 1632 | From Canada | Registered: Feb 2012
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Summer3
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posted
I have been treating aggressively for about 9 months. I haven't had any improvement. It's a slow decline.
The glutathione is helping me immensely. If it wasn't for the break I get from it, I don't know what I'd do. I'd be seriously depressed.
After an IV is the only time that I feel okay. I have skipped it for a while and I felt TERRIBLE. I cannot function at all. Then I get it and get about a 24-36 hour time frame where I feel great. The other vitamins in it also significantly reduce my limb numbness and twitching. I also feel incredibly clear-headed after one for several days. Mine is pure glutathione with a few other added vitamins. It's a push.
I don't use any binders. Do you mean like cholestyramine or charcoal?
Catgirl
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posted
Wow, Summer, good for you with the glut. I've gotten both pushes and IVs.
Are you chelating to get heavy metals out? I'm doing DMSA. Maybe that's why I feel so terrible. I felt great the first two months on it. Then I started adding some supplements I had forgotten to take and I started feeling worse.
So your IV has vitamins in it? Do you think it's the glutathione, or the vitamins or both that make you feel better?
The push I've gotten has been pure glutathione also.
I guess KPU is for people who are not progressing in their therapy. I have been getting all but the arachidonic acid.
I couldn't find the link on better health guy, but found this:
-------------------- --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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Catgirl
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posted
So Maya, maybe that's what's going on with me (I was missing the arachidonic acid. Thanks!
How long do you have to do the KPU for?
-------------------- --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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Summer3
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Member # 35286
posted
I feel VERY lucky that the glutathione is still working for me. But it never lasts over a 1.5 days. Once in a while I get no effect from it. It gradually gets worse the farther I get away from it.
I feel like it's just masking the progression of the disease. That's what worries me.
Thanks for the link, I will read it. I am not chelating right now. I think it's a combo of the vitamins and glutathione making me feel better.
I am really worried that the meds are not helping me like they should be. I often hear of people herxing and then having improvement. I get the herx, but don't improve afterwards. I either stay worse or stay at my typical level of bad.
Catgirl
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Member # 31149
posted
Have you been tested for FL1953 (protmyxzoa)? I'm going to ask my doc about it next time I see him.
-------------------- --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
hey summer3- I'm in the same boat been treating for 8 months very aggressively and although I've been staying out of the hospital, I'm am also declining my back side is so stiff i can barely bend severe burning nauseating headaches, I feel I just want to die. I can't stand it already. I've never been so scared in my life. Been suffering for 8 years but the past year has been the worse.
I can't even imagine my body getting better at this point , I just found out my nkc function went from a 4 to a 2. my doctor keeps reassuring me he will make me better.
Posts: 229 | From Forty Fort, PA | Registered: Feb 2012
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posted
IV glut should stay in your system for 3-4 days. make sure that you are getting max dose. 3000 mg should be minimum since you are paying for it anyway.
Posts: 109 | From PA | Registered: Feb 2012
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nonna05
Frequent Contributor (1K+ posts)
Member # 33557
posted
This KPU issue and glutathione are very interesting to me...
Well anything to figure out what's helping or not is.
Anyway ,even before my diagnoses several more combo doctors/clinics tried Glut. with me,
Inhaled, IV's , liquids, pills, etc,,It always seemed to not help...Or make me feel worse..
Then diagnosed with this and am using the liquid/lip form, dab a day,,,,
Whay does KPU feel like/or do??
It would be very interesting to know that I might be holding yet another thing up towards healing from something like this..
Posts: 2563 | From Denver,CO | Registered: Aug 2011
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Maya12
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Member # 36392
posted
Hey guys , I do have kpu but can't say exactly how it makes me feel as it is hard to separate that from the disease.
Kpu makes it hard to detox though and can also make you sensitive to things like gleutithione .
It can cause a whole host of mental and physical symptoms and makes you hold on to heavy metals as well ,
If you google "kpu the missing piece of the puzzle " there is a great article by Scott furgason and he explains all about kpu
I haven't started treating the kpu yet but do know that with kpu treatment just makes you worse till it is corrected.
Both Keebler and six know a lot more about kpu than I do but I hope this helps a bit
Posts: 1632 | From Canada | Registered: Feb 2012
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Maya12
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posted
Hey cat girl if you just started taking the supplements for kpu that will make you feel worse as it both activates the immune system and also helps dump more heavy metals
Posts: 1632 | From Canada | Registered: Feb 2012
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Maya12
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And dr k says that 80 % or Lyme sufferers and 75% of those with heavy metals have kpu so it seems to be quite common , my llnd tested me for it and I was really high, but I need to chelate some heavy metals first according to my llmd , before I really treat the kpu so that I don't have a huge dumping of heavy metals all at once
Posts: 1632 | From Canada | Registered: Feb 2012
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Catgirl
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Thanks Maya. It's starting to sink in (slowly). Actually, though, I felt like crap as soon as I added biotin. Maybe that was all I needed to release the metals. I only added the arachidonic acid a couple of days ago.
I've always wondered why I felt so much better on zinc (before I started chelating).
-------------------- --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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Actually, though, I felt like crap as soon as I added biotin. Maybe that was all I needed to release the metals. I only added the arachidonic acid a couple of days ago.
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