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Super Contributor
Posts: 503
Registered: ‎03-10-2010
On 2/21/2015 Ford1224 said:
On 2/20/2015 FATCATinCT said:

Hi Ford,

Any med for lyme is used in very high dosages, well above the norm. I remember being on Cipro, lord, about 3500mgs a day for about 6 or so months if not longer. It takes a lot to tackle lyme and co-infections.

Let's hope something as simple will be a better cure, but of course you know big pharma will get their greedy paws on it.

No doubt FATCAT. She herxed pretty quickly on the first go-around (doxy), but she seems to be tolerating the higher dose . . . or she's suffering through it and just not telling me.

I was on Cipro last month for a UTI. For some reason it works for me on a short term basis. I can't take it IV though, my arm immediately swells up and gets red. I don't understand that kind of allergy.

It's a pretty rough antibiotic. I, too, am amazed that you were able to tolerate this level of Cipro for so long. I hope it did the trick (at least temporarily, as we all know it will only be temporary).

Take care, my friend.

I am glad your daughter is doing better this go-around on the meds. It makes sense to me that she would not be herxing as bad, if not at all anymore, as the first round would have had the most die off of the spirochetes.

I was taking 2 500mg cipro 3 times a day so it was 3,000 mg's not 3500 but still a very high dose. I remember being in bed for 3 plus weeks feeling like I was going to die and truly wanted too. I was on minocycline for Rosacea for several years and still showed positive for many lyme bands so I had to be put on higher doses of the cyclines which did not work so the high dose of cipro was in order.

I do still have the lyme flares which many of us lymies do when diagnosis is missed and the lyme and co-infections get to fester for many years. Unfortunately, the Western Blot is such a flooky test with so many false negatives, so many people suffer needlessly to this awful disease. One would think as Lyme is so geographically widespread that better testing would be available, having to pay out of pocket for specialized labs is ridiculous.

You take care as well Ford and give my best to your daughter.

Super Contributor
Posts: 449
Registered: ‎01-23-2011
You have to be careful with Claritin. It can be bad for men because it negatively affects the prostate, and although we women don't have that particular piece of anatomy, when I took Claritin, I felt like I had a bladder infection every time. It was weird.
Esteemed Contributor
Posts: 7,426
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My sister is a lyme specialist in the Central & NE PA region- a pediatric rheumatologist by 'trade'. I'm going to ask her about this.

Honored Contributor
Posts: 13,510
Registered: ‎05-23-2010

This study was done in vitro, not in people. The following is the abstract from the study. Try to read it carefully, twice. The more you read first hand studies, the more familiar you become with scientific studies and the less you have to rely on others to get scientific information. This tip is not meant to insult anyone in any way. I'm just a science teacher that wants to foster public science literacy.

Honored Contributor
Posts: 13,510
Registered: ‎05-23-2010
Borrelia burgdorferi, the causative agent of Lyme disease, utilizes manganese (Mn) for its various metabolic needs. We hypothesized that blocking Mn transporter could be a possible approach to inhibit metabolic activity of this pathogen and eliminate the infection. We used a combination of in silico protein structure prediction together with molecular docking to target the Borrelia metal transporter A (BmtA), a single known Mn transporter in Borrelia and screened libraries of FDA approved compounds that could potentially bind to the predicted BmtA structure with high affinity. Tricyclic antihistamines such as loratadine, desloratadine, and 3-hydroxydesloratadine as well as yohimbine and tadalafil demonstrated a tight binding to the in silico folded BmtA transporter. We, then, tested borreliacidal activity and dose response of the shortlisted compounds from this screen using a series of in vitro assays. Amongst the probed compounds, desloratadine exhibited potent borreliacidal activity in vitro at and above 78 µg/mL (250 µM). Borrelia treated with lethal doses of desloratadine exhibited a significant loss of intracellular Mn specifically and a severe structural damage to the bacterial cell wall. Our results support the possibility of developing a novel, targeted therapy to treat Lyme disease by targeting specific metabolic needs of Borrelia.
Esteemed Contributor
Posts: 7,426
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On 3/3/2015 Mindy D said: Borrelia burgdorferi, the causative agent of Lyme disease, utilizes manganese (Mn) for its various metabolic needs. We hypothesized that blocking Mn transporter could be a possible approach to inhibit metabolic activity of this pathogen and eliminate the infection. We used a combination of in silico protein structure prediction together with molecular docking to target the Borrelia metal transporter A (BmtA), a single known Mn transporter in Borrelia and screened libraries of FDA approved compounds that could potentially bind to the predicted BmtA structure with high affinity. Tricyclic antihistamines such as loratadine, desloratadine, and 3-hydroxydesloratadine as well as yohimbine and tadalafil demonstrated a tight binding to the in silico folded BmtA transporter. We, then, tested borreliacidal activity and dose response of the shortlisted compounds from this screen using a series of in vitro assays. Amongst the probed compounds, desloratadine exhibited potent borreliacidal activity in vitro at and above 78 µg/mL (250 µM). Borrelia treated with lethal doses of desloratadine exhibited a significant loss of intracellular Mn specifically and a severe structural damage to the bacterial cell wall. Our results support the possibility of developing a novel, targeted therapy to treat Lyme disease by targeting specific metabolic needs of Borrelia.

'hypothesized', 'theorized', 'possibility'- all very tentative without clinicals. Claritin has it's own set of issues for some people as well.

Honored Contributor
Posts: 12,997
Registered: ‎03-25-2012
On 2/21/2015 FATCATinCT said:
On 2/21/2015 Ford1224 said:
On 2/20/2015 FATCATinCT said:

Hi Ford,

Any med for lyme is used in very high dosages, well above the norm. I remember being on Cipro, lord, about 3500mgs a day for about 6 or so months if not longer. It takes a lot to tackle lyme and co-infections.

Let's hope something as simple will be a better cure, but of course you know big pharma will get their greedy paws on it.

No doubt FATCAT. She herxed pretty quickly on the first go-around (doxy), but she seems to be tolerating the higher dose . . . or she's suffering through it and just not telling me.

I was on Cipro last month for a UTI. For some reason it works for me on a short term basis. I can't take it IV though, my arm immediately swells up and gets red. I don't understand that kind of allergy.

It's a pretty rough antibiotic. I, too, am amazed that you were able to tolerate this level of Cipro for so long. I hope it did the trick (at least temporarily, as we all know it will only be temporary).

Take care, my friend.

I am glad your daughter is doing better this go-around on the meds. It makes sense to me that she would not be herxing as bad, if not at all anymore, as the first round would have had the most die off of the spirochetes.

I was taking 2 500mg cipro 3 times a day so it was 3,000 mg's not 3500 but still a very high dose. I remember being in bed for 3 plus weeks feeling like I was going to die and truly wanted too. I was on minocycline for Rosacea for several years and still showed positive for many lyme bands so I had to be put on higher doses of the cyclines which did not work so the high dose of cipro was in order.

I do still have the lyme flares which many of us lymies do when diagnosis is missed and the lyme and co-infections get to fester for many years. Unfortunately, the Western Blot is such a flooky test with so many false negatives, so many people suffer needlessly to this awful disease. One would think as Lyme is so geographically widespread that better testing would be available, having to pay out of pocket for specialized labs is ridiculous.

You take care as well Ford and give my best to your daughter.

I haven't heard from her all week. I've texted her a few times and received one word answers. So I know she is not feeling well, as that is her pattern. If I call her, I will get the same thing, so I have to wait until she's ready.

The shades came in and she never even told me, and she had been excited about them. This is our conversation regarding same:

"Hi honey, did the shades ever come in?

Yes.

Did you look at them?

Yes. I looked at one.

Did it look ok?

Yes.

Ok, thx."

I wanted to ask her why she didn't let me know because I was getting worried that they would come in late. But I knew not to. She isn't being mean when she does this, she just can't handle any conversation when she is feeling sick. So, of course, now I'm worried sick. I thought she had a doctor appointment this past week, and maybe she did and he said she wasn't improving. This is so hard.

Thank you for your well wishes, FATCAT. I hope you're feeling better.{#emotions_dlg.wub}


Formerly Ford1224
We must always take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented. Elie Wiesel 1986
Super Contributor
Posts: 4,044
Registered: ‎03-09-2010
On 3/2/2015 ThinkOutsideTheBox said: You have to be careful with Claritin. It can be bad for men because it negatively affects the prostate, and although we women don't have that particular piece of anatomy, when I took Claritin, I felt like I had a bladder infection every time. It was weird.

It is odd you should say that. I was taking Claritin for allergies about 10-12 years ago. I began having some bladder infections and issues so I went to my GP and she sent me to a urologist. The urologist noticed that I was taking Claritin every day and told me to stop. He told me it could cause urinary problems!

Super Contributor
Posts: 4,044
Registered: ‎03-09-2010

Thanks for posting this information Ford. I am going to forward it to someone I know with Lyme. It's really debilitating. I have read your previous posts about your daughter. They really need to find relief for people suffering from this and it needs to be taken more seriously by the medical community.

Honored Contributor
Posts: 12,997
Registered: ‎03-25-2012
On 3/4/2015 imaclotheshog said:

Thanks for posting this information Ford. I am going to forward it to someone I know with Lyme. It's really debilitating. I have read your previous posts about your daughter. They really need to find relief for people suffering from this and it needs to be taken more seriously by the medical community.

I don't know how much attention this gets in an average person's life. I get a lot from news feeds I have registered for, and my daughter does also. So I see all the news every day and I, therefore, find it extremely serious, almost epidemic, and very frightening. And of course, I see what's happening with my daughter, how quickly she is deteriorating, and there's no one to turn to. I am so afraid I am going to lose her.

As I've heard so many Lyme victims say, I almost wish it was cancer . . . because it is recognized, treated, and the cure rate gets higher all the time. Lyme victims are ignored. It's like they are hanging by one finger off the edge of a cliff and there are hordes of people standing around and no one comes to help.

Formerly Ford1224
We must always take sides. Neutrality helps the oppressor, never the victim. Silence encourages the tormentor, never the tormented. Elie Wiesel 1986