Dr. C in Missouri

[Lynne G.SD]

Hi JB;
      You can cry on my shoulder if I can cry on your's.I just recently found out that my doctor is certain I have lyme and that girl is never wrong. I suspect I had it about 20 years ago when I developped rotator cuff problems and a herniated neck muscle.Despite total SD remission I cannot get off of mino without it coming back.She has seen this a lot and put me on a honking big list of antibiotics.Hardly ever had much herx unless I took zith but now it is just terrible..
    All the problems I had when coming down with SD are showing up as HERX, sore and blery(English spelling?)eyes,heart palpitations and general left side chest pain,neck pain where there was a hernia between C3 and C4,aching hands and general body pain from the hips down.The pain is about 4-5 times stronger than originally and was so bad I had to stop the antibiotics to make it through the last orchid show.2 days after stopping the pain was gone.My brain feels like it is a total heap of mush and that ticks me off the most.Now I know how people beginning Altzheimer's must feelI know that long standing Lyme can nearly be impossible to eradicate but am hoping for the best and hoping this herx lessens.

[Roz]

Lynne,

I hope these lines find you doing well. Lyme and company hit the brain in just a few weeks after a bite.

I am on a very rough med schedule myself.

I had a wonderful life before Lyme, hang in their, and hang with us mate.

x Roz

 

 

[user=31]Lynne G./SD[/user] wrote:

Hi JB;
      You can cry on my shoulder if I can cry on your's.I just recently found out that my doctor is certain I have lyme and that girl is never wrong. I suspect I had it about 20 years ago when I developped rotator cuff problems and a herniated neck muscle.Despite total SD remission I cannot get off of mino without it coming back.She has seen this a lot and put me on a honking big list of antibiotics.Hardly ever had much herx unless I took zith but now it is just terrible..
    All the problems I had when coming down with SD are showing up as HERX, sore and blery(English spelling?)eyes,heart palpitations and general left side chest pain,neck pain where there was a hernia between C3 and C4,aching hands and general body pain from the hips down.The pain is about 4-5 times stronger than originally and was so bad I had to stop the antibiotics to make it through the last orchid show.2 days after stopping the pain was gone.My brain feels like it is a total heap of mush and that ticks me off the most.Now I know how people beginning Altzheimer's must feelI know that long standing Lyme can nearly be impossible to eradicate but am hoping for the best and hoping this herx lessens.

[JBJBJB]

[user=31]Lynne G./SD[/user] wrote:

Hi JB;
      You can cry on my shoulder if I can cry on your's.I just recently found out that my doctor is certain I have lyme and that girl is never wrong.

 

Wow, Lynne, so sorry to hear what you are going through. Thanks for the shoulders. I am doing REALLY well. I cut down the thyroid medicine and now my skipping heart beat problem is getting a little better. It is only when I laid down, then it starts again, but not as frequently as the other day. It seems the Herxing is going through several parts of my body. Sauna helps a lot.

Roz,

Thanks for the information and support. I am getting better today. I also drank a lot of water which helps. Thanks for “holding” me up.

JB

[Lynne G.SD]

Hi JB;
      How long have you ben on a Lyme protocol and what antibiotics are you using.I know my doctor like to hit hard and fast but geeeeeeezzzzz the herx is a stinker.5 different antibiotics a week seems a bit much.

[JBJBJB]

[user=31]Lynne G./SD[/user] wrote:

Hi JB;
      How long have you ben on a Lyme protocol and what antibiotics are you using.I know my doctor like to hit hard and fast but geeeeeeezzzzz the herx is a stinker.5 different antibiotics a week seems a bit much.

Lynne,

I started less than a month ago. The second and third week hit me really hard. I gradually increased the Flagyl dosage. Now I am on 750 mg daily.

I am getting a little improvement but other things are making me worry.

1) Mouth thrust problem, huge….

2) swelling puffy fingers (very swelling)

3) lost my voice (perhaps it is due to mouth yeast infection)

4) my scalp feels very tight and it hurts from time to time…

5) a lot of pain in my hands.

:headbang:

 

[JBJBJB]

Update

It's been 3 weeks after I started daily 750 mg Flagyl regime. Yesterday I began to feel the improvement. The first thing I noticed was my shoulders were not seized up, I could raise my arms a little bit. Prior to the treatment I could not raise my arms to put dishes away into the cabinet at all. :roll-laugh:

The second improvement is my lungs. I breath a little easier. :roll-laugh:

Flu alike symptoms seem to fading away. :roll-laugh:

I still have a lot of pain and also insomnia problems after I started this medicine. It also affects my appetite, but it is coming back. Tons of skin rash! Brain fog. Mouth thrush big time. Sauna helps me.

I am not on any anti-inflammatory medicine, only occasionally I take Aleve. Recently I found Aleve helps me to sleep through the night.

In Health We Cheer!

 

 

 

[Maz]

[user=266]JBJBJB[/user] wrote:

Update

It's been 3 weeks after I started daily 750 mg Flagyl regime. Yesterday I began to feel the improvement. The first thing I noticed was my shoulders were not seized up, I could raise my arms a little bit. Prior to the treatment I could not raise my arms to put dishes away into the cabinet at all. :roll-laugh:

The second improvement is my lungs. I breath a little easier. :roll-laugh:

Flu alike symptoms seem to fading away. :roll-laugh:

JB, what GREAT news!!! :dude: Isn't it amazing how a simple change in protocol can make all the difference? Those early days of herxing are so unnerving, wondering if we're going backwards or forwards….getting those windows of light shining through just does a heart (and mind!) good. Well done sticking with it and wading through the herxing. I've heard flagyl can be a beast in this regard, but if one can stick it out then it can make a huge difference to progress.

Way to go, JB!

Peace, Maz

[JBJBJB]

[user=27]Maz[/user] wrote:

JB, what GREAT news!!! :dude: Isn't it amazing how a simple change in protocol can make all the difference? Those early days of herxing are so unnerving, wondering if we're going backwards or forwards….getting those windows of light shining through just does a heart (and mind!) good. Well done sticking with it and wading through the herxing. I've heard flagyl can be a beast in this regard, but if one can stick it out then it can make a huge difference to progress.

Way to go, JB!

Peace, Maz

Thanks, Maz!

The skipping heart beat is getting a little better, but still worries me. I tried to use my imaginations, that Flagyl is killing the bacterias in my heart. :roll-laugh:

:JB

[mschmidt]

JB,

Sorry I entered this thread so late…I had terrible heart palpitations before I started Minocin, and continued to have them even after starting clindy iv's.  It wasn't until I was put on Omnicef, then Biaxin that they finally went away.  I did experience some very mild palps when I first started armour thyroid but, that has subsided, and I'm actually only taking it every other day now. 

My dark “freckly” skin took about 6 months to go away, after I started the clindy iv's.  The weird thing is my skin has really lightened everywhere but my arms (they're exposed to the sun a lot because I walk outside).  I used to have patches of brown spots on my body, and they are all gone now.  I never had white skin because of my ethnic background but, it's nice to see it turn back to normal.  I'm scared to use sunscreen because of all the chemicals in it so, I'm sure I'll be dark again this summer.

I hope your skipped beats go away soon.  Thinking of you, and wishing you well:D

Maria

[JBJBJB]

[user=977]mschmidt[/user] wrote:

  I did experience some very mild palps when I first started armour thyroid but, that has subsided, and I'm actually only taking it every other day now. 

My dark “freckly” skin took about 6 months to go away, after I started the clindy iv's.  The weird thing is my skin has really lightened everywhere but my arms (they're exposed to the sun a lot because I walk outside). I'm scared to use sunscreen because of all the chemicals in it so, I'm sure I'll be dark again this summer.

Maria,

Thanks for the comfort words and sharing your experiences. I hope it will go away. I do believe drug interaction effects. Perhaps this is some type of interaction. I am amazed how many drugs I am taking each day. There was over 15 year period I did not take any medicine, not even a pain killer. It's very hard on my body. I have skin rash a lot and my heart beat is really messed up.

BTW, I also don't like Sunscreen lotion. I am, too, allergic to sunscreen lotion.

JB

[mschmidt]

JB,

I can relate to never taking anything before I got sick… I wouldn't even take a tylenol or aspirin, on the rare occasion that I did have a headache.  Now, I'm in disbelief at how many bottles of pills I have–it's ridiculous!!  I don't know how I keep it all straight some days:shock:

Maria

[JBJBJB]

[user=977]mschmidt[/user] wrote:

JB,
 Now, I'm in disbelief at how many bottles of pills I have–it's ridiculous!!  I don't know how I keep it all straight some days:shock:

Maria

Maria,

Likewise… every morning I stand in front of a troop of bottles, deciding which medicine I take first. I am still very overwhelmed.

As for dark skin, pure aloe vera gel helps. My skin hurts when I am under the sun. It feels like burning, even when I am inside the van with tinted window. After shower, I apply aloe vera lotion or gel, it helps a lot. JB

 

[JBJBJB]

[user=379]Elaine son w/MCTD[/user] wrote:

Hi JB,

I haven't been on here in a long time. Glad to hear you are getting some relief with the flagyl.

I don't know about the palpitations, but Dr C said pericarditis pain could be from toxins. Hope it settles down for you.

My son just had his wisdom teeth out and I think he is herxing from the change in ABX. It always sneaks up and then hits like a hurricane.:sick:

Hang in there and listen to your gut, if you think you need to get it checked out, get it checked out.

XX,

Elaine

Elaine,

I am sorry your son is having a huge herxing again. It's no fun. I hope he will get over with it soon. He is going to take final exams in few weeks, hopefully he will be fit to do well. Poor kid.

I am doing well except swelling problems. I have not used Sauna for almost a week due to busy schedule. I am depending on Aleve to get the night through. Otherwise, I am okay. My fingers are so swelling, feeling like they are going to be busted.

The reason I type big words is my eyes have inflammation…. so I am on fire now, hopefully this will be over soon.

Yes, Flagyl is pretty hard!

JB

 

[Maz]

[user=266]JBJBJB[/user] wrote:

The reason I type big words is my eyes have inflammation…. so I am on fire now, hopefully this will be over soon.

Hi JB,

Your post caught my eye, because eye problems in Lyme can be due to bartonella. Sometimes, while treating one coinfection, another will become opportunistic…worth checking this with Dr C, too.

Have a look at the short video clip of Dr H (second from bottom) who talks about this at the 2005 Hartford Lyme Conference:

http://ctlymedisease.org/videoclips.htm

Peace, Maz

[JBJBJB]

Maz,

Thanks for reminding me of this. Dr. C is aware of it. I have filled out the questions and one of the group questions talked about eye problems. I will definitely remind him of this issue, too. Thank you for the knowledge based information.

After all the ordeals you and I go through, we could become doctors ourselves.

LOL:roll-laugh:  :JB

 

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