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POTs improvement after antibiotics and on going low red blood count


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Hi,

I have had an ongoing low red blood cell count (neutrophil count) since contracting shingles 18 months ago. it has been suggested that I was post viral or was fighting some other infection. I have been chronically tired since having shingles but i was lucky that tiredness had not been a big problem generally with my pots.

Then 6 weeks ago I developed burning when passing water. After a week on antibiotics the debilitating tiredness and general feeling of lowness that has dogged me since shingles just lifted. I was able to work, walk and felt good in myself. My energy returned and although I still have pots I did not have any episodes of feeling really ill with it. This has been sustained until last week when I again notice UTI symptoms again and started to feel tired.

I just wondered if anyone else had experienced dramatic improvement after taking antibiotics.

I didn't take any medication for shingles - I was too afraid because of over reaction to even the simplest drugs and this is probably the first time I have need them during the five and a half years I have had pots. 

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I also have improvement when on antibiotics, that is if the infection they are treating hasn't rocked the boat to much. I have also noticed that it is a faster and more long lasting result with IV antibiotics.

I'm actually on antibiotics right now (for j tube/ post op infection) and had a dose of IV on Saturday and today is the best I've felt in months. 

In regards to blood count... I am almost always anemic with low iron and through trials of different forms of iron have found that I don't absorb it well, if at all. Most likely because of my gastroparesis but also made worse by gut flora inbalance. That is why it is so important to take a probiotic when on antibiotics. hematology has set me up on a protocol for iron infusions to prevent my blood counts from dropping. Are all your blood counts low or just neutrophils? (Those are white blood cells btw.) 

Hope you feel better soon!

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Hi to you both! Emma, I am sorry to hear you had shingles. I've heard from friends how painful those can be and so happy that you've recovered from them. I did notice improvements after IV antibiotics after a uti went to my kidney, It helped tremendously with brain fog for a few days later.   Here is another thread you might want to check out http://forums.dinet.org/index.php?/topic/27522-im-me-again-clear-thinking-long-story/#comment-256270

Ancy, when I was severely anemic (ferritin was 7), I didn't absorb the iron pills, either. I was given iron infusions throughout a 9 month period and you wouldn't believe how much it helped w/ the fatigue and overall weakness feeling. The anemia also definitely contributed to my exercise intolerability and correcting that helped greatly in that area. I've been done with the infusions for at least 6+ months and haven't had any issues with anemia since. Hoping you get great benefits as well!

 

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I consistently feel better when I've been on antibiotics.  It usually lasts for about a week after I finish the antibiotics and then my symptoms gradually return. I've tried to pin down an answer from several docs and honestly they have a few theories but nothing we can pin down for sure.

Edited by Katybug
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Sarah- thank you for the words of encouragment, good to know it can last longer. I've been anemic most of the time over the last 5 years. Prior to this iron infusion my ferritin  level was at 4 so I know all to well everything you are talking about. Unfortunately, as of the last check, my levels have not come up to where hematologist wants them so looking at another dose probably soon. I do notice the benefit of it, especially in terms of energy.Thanks again and I wish you all the best!

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Hi,

I took Trimethoprim which is standard for UTI but not for much else apart from skin conditions. It may be I had a low grade UTI infection for a while and this was making me feel unwell. 

Made a mistake - it is of course a white blood cell count that was low. I saw my GP today and as I feel better she will repeat the blood test and see if the antibiotics have made a difference.

Thank you TCP - I have often suspected i have a mast cell problem but my original doctors were not too interested. I have now moved nearer London and am seeing a POTs specialist who used to work at the Mayo Clinic and I think she is great. Definitely feeling more hopeful that I might get the right medication or advise.

It was just so pronounced - the change in how I felt - there has to be something in this.

 

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  • 2 weeks later...

those of you who feel better on antibiotics have you ruled out Lyme disease?

 

On 30/08/2016 at 3:45 AM, TCP said:

I've read that if you have Mast Cell Activation issues with POTS, then taking antibiotics will improve the histamine problem, which could be at the root of all of the issues. 

I thought it would be quite the other way around. My mast cell issues started after a few weeks of antibiotics. 

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Yes, I have been treated extensively for tick borne illness but that seems to be behind me (if it ever really can be behind you) but I do believe it's what set everything else off.

Per TCP'S note, some antibiotics have an anti inflammatory effect, i.e. Flagyl. As mast cells are part of the inflammatory process, that's probably what's happening there. But, we can all have varying reactions to things, especially when we have mast cell issues. I'm extremely allergic to some antibiotics. Others are not a problem. 

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On 10/09/2016 at 4:16 AM, krystal said:

those of you who feel better on antibiotics have you ruled out Lyme disease?

 

I thought it would be quite the other way around. My mast cell issues started after a few weeks of antibiotics. 

I think it depends on the antibiotic given. I've read of improvements on the mast cell forum and other anecdotal reports from several people on the Internet. Antibiotics either help or trigger mast cell activation. I think it's the type usedand where you are at with the condition. 

I think the lady, who's diet I follow, said she improved on antibiotics and she'd heard from others saying the same thing. 

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On 10/09/2016 at 6:23 PM, Katybug said:

Yes, I have been treated extensively for tick borne illness but that seems to be behind me (if it ever really can be behind you) but I do believe it's what set everything else off.

Per TCP'S note, some antibiotics have an anti inflammatory effect, i.e. Flagyl. As mast cells are part of the inflammatory process, that's probably what's happening there. But, we can all have varying reactions to things, especially when we have mast cell issues. I'm extremely allergic to some antibiotics. Others are not a problem. 

Same here. I react badly to some and fine with others. My tolerance has improved generally with all foodsand meds since sticking to the low histamine, low inflammatory diet. 

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