posted
For me it is IV clindamycin, ceftin, batrim ds, and pulsing flagyl. I also did B12 injections daily with deplin.
Improvements were within a few months.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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beaches
Frequent Contributor (1K+ posts)
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posted
faithful, how much B12 each day (and assuming the methylcobalimin shots) and how much deplin? Did you try folapro or MTHFR-5 before going on the deplin?
Also, were you on all those IV meds at once?
Would you mind telling what GI symptoms (and other symptoms) were alleviated?
Thanks so much.
Posts: 1885 | From here | Registered: Jul 2012
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droid1226
Frequent Contributor (1K+ posts)
Member # 34930
posted
rocephin has cured my gastro problems. but that's about it.
quote:Originally posted by beaches: faithful, how much B12 each day (and assuming the methylcobalimin shots) and how much deplin? Did you try folapro or MTHFR-5 before going on the deplin?
Also, were you on all those IV meds at once?
Would you mind telling what GI symptoms (and other symptoms) were alleviated?
Thanks so much.
Yes I was on all those meds at once. The only med that was IV is clindamycin, all others were orals. Forgot to mention I was on mepron at a high dose too. I have an LLMD who is aggressive and is getting me well.
I take 1/2 cc methylcobalamin and the dose per cc is 20 mg so I am taking 10 mg a day.
I take 15 mg deplin. I tried all the other otc folate supplements and although they are less expensive, they just don't do it for me.
A year ago, all I could eat was eggs and yogurt and everything else I ate pretty much made me feel sick.
I just had a physical LLMD appt a couple of weeks ago and 3 oral meds are going to change. I no longer herx from Flagyl at all. In fact, nothing makes me herx anymore.
Babesia is still kicking my behind. I am actually on oxygen because my pulsox is low. Changing to malarone now. Flagyl is being replaced with tindamax and ceftin is being replaced with cefdinir.
A year ago I could not tolerate the cefdinir but now I think I will be okay taking it.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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Tammy N.
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posted
Abx wipe out your gut. There is no way around it. The only real way of truly fixing your gut is to get off abx.
Most gut issues indicate parasite infections. It's impossible to keep parasites at bay when the gut is off. Maybe try treating for parasites and see if your gut issues resolve. I have heard many positive stories of others fixing their guts (and other symptoms) by going after parasites.
Best to you.
Posts: 2238 | From East Coast | Registered: Jul 2010
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posted
Not true, if you take a good amount of probiotics you can protect your gut. Also, diet is key to all of this. My LLMD treats for parasites but the best thing I ever did was go on the Geno type diet which is the next generation to the blood type diet.
It started healing my stomach even on all those drugs.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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beaches
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posted
Faithful, thanks for your reply. I am assuming you have a MTHFR mutation as you are on the B12 and the Deplin??
Do you have a CBS mutation and/or SUOX? Just asking b/c you mentioned the Bactrim. If my questions are too personal, I apologize in advance�you can just PM me if that is better.
I am heterozygous for the CBS mutation and I�ve never had a problem with Bactrim or any food high in sulfur.
I will have to channel some extraordinary math skills (which I am now lacking, and come to think of it, I�ve never had �extraordinary� math skills lol) to see how your daily B12 dose compares to the weekly one.
Did you tolerate the Deplin w/o side effects? Just today I learned that folate can cause anxiety.
I�m nowhere near 15 mg of folate, but experienced random anxiety �attacks� out of nowhere and for no good reason.
I used to get these attacks from Lyme itself years ago but that hasn�t happened in a long time. These recent attacks began when I started supplementing with the folapro. I worked my way up to 2400mcg, or 2.4mg. So apparently I am sensitive to this and I will have to watch my dose closely.
Glad to hear you no longer herx! I�ve always tolerated flagyl well. Then again I was only on it twice, both times for c. diff.
Sorry to hear about the lingering babesia. Sounds like you�ve got a strong strain of it if your pulse-ox is low. I hope the malarone helps. Will you be taking zith at the same time?
Thanks for your input and best of luck to you.
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beaches
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OK, so now I have more work to do! Need to look into that Geno diet.
My family's diet is pretty darn good---lean proteins, lots of fresh veggies and fruits, good oils, gluten-free, no soda, as organic as possible, etc.
We're very low on the junk food scale compared to the majority of people we know. Not an easy task when you have kids to feed.
Tonight the kids actually argued over who should finish the leftover salad, which is a little surreal.
Posts: 1885 | From here | Registered: Jul 2012
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beaches
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Tammy, thanks for your input. I know what abx can do to the gut. I also know about parasites.
Posts: 1885 | From here | Registered: Jul 2012
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posted
I am heterozygous for MTHFR and so is my husband. Never had any issues going to 15 mg of deplin but I am sure you will eventually titrate to where you need to be. The B12 is what help make my brain cells work again.
Flagyl used to cause a major herx in me. Both my husband and I hated the two weeks we had to take it because we would get zinged with pain from somewhere at random.
I am treating Bartonella, Babesia and Ehrilichia for coinfections. I have been out of the country and all over the US and as you know, there are many strains of coinfections they can't even test for.
I can't take zith. It causes Q T prolongation with certain drugs and it conflicted with a muscle relaxer I was on. Found out the hard way as it caused all kinds of heart issues. The IV Clindamycin replaces that and hits Babesia.
No problems on the Batrim at all. My husband herxes like crazy when he takes the flagyl with the bactrim.
The oxygen got rid of a lot of pain I had in my muscles. I think this was going on a long time and no one ever took my pulsox when I had an appt. I got down to 78 in Colorado and went back to DC for my doctor visit where I still had a low pulsox at sea level.
Hopefully as we hit Babs harder, I can get off the oxygen soon. I feel good. Don't like being on a leash all the time tied to an oxygen concentrator but am grateful that I am not in pain.
The only thing I need right now is more stamina. My LLMD did all the neuro tests and I am much better and she said I as strong as an ox.
Before getting sick, I used to run a farm, train horses and run two businesses. I also worked out with weights 3-4 days a week. I am very anxious to get back to my life and right now, I can see it.
That is why we left tick endemic VA and moved to Colorado. Less of those nasty critters here and we feel better at a higher elevation.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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posted
Random anxiety attacks can also mean your adrenals need support.
-------------------- Faithful
Just sharing my experience, I am not a doctor. Posts: 2682 | From Colorado | Registered: Oct 2009
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Tammy N.
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Hi Beaches - sent you a PM.
Faithful - do you think Deplin is better than other brands? I thought with MTHFR we needed L-5-methyl tetrahydrofolate. Deplin says it is l-methylfolate. I wonder if it is the same, just abbreviated? Or if it is a different form?
I am homozygous for MTHFR and have been taking Falopro. My doc recommends the Thorne brand so I was going to switch. Wondering if Deplin is better somehow?
Posts: 2238 | From East Coast | Registered: Jul 2010
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Razzle
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posted
Deplin is made by pharmaceutical company, and has a bunch of junk inactive ingredients. If it were me, I'd go with the Thorne Methyl-Guard.
-------------------- -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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