Tag Archives: tick-borne diseases

Back On Antibiotics – Herxing

26 Feb

antibiotic

 

Back On Antibiotics – Herxing

I couldn’t handle being off of antibiotics any longer. I wanted to give my body a rest after the candida scare and after the Picc and clotting. My PCP recommended taking a break also so I went with it but on my own. After (insert number of days here because I forget) I have been of antibiotics my symptoms were getting worse.

Here is some pretty solid proof that 10 days of antibiotics does not kill or “cure” chronic lyme disease and tick-borne diseases stupid IDSA/CDC. I have been on 2 years of aggressive treatment and I am nearly just as bad as when I started 2 years ago.  I would say I have progressed 5% – 10% at the most but now after stopping antibiotics I am going 2 steps back.

My neuro problems such as the turrets twitching in my head, tremors, vertigo and other issues seemed to calm down a lot better while on antibiotics. Now that I have been off I noticed they started to increase each day until recently when I had them all back full force. My head will nod on it’s own about 3-4 times (turrets twitch).

My tremors which were calm for the first time in 16 years are back and shakier than ever. My POTS and blood monitor reading is more tachy now and my reading today was 140/101 with 89 pulse and 96% oxygen. I was low with bradycardia last year and in the 50’s range. It is getting tough to walk again and I am more bedridden. The vertigo has increased (besides what mino did) and I run into walls no matter where I walk. I have to hold onto walls and objects to walk.

My brain fog and cognitive issues are also getting worse. I have no idea what day/month/year it is. I was starting to stutter daily which has never happened to me. Still have dyslexia. I cannot remember names, faces or words at all. I now just tell a story and say “that one thing” a lot. I already had bad memory short term and long term. Things were just getting worse.

So this week I started back on Suprax and Coartem. I will be back on oral Clindamycin and Minocycline soon. So far I have only herxed one time (which is as I write this). My head is splitting open, migraine and feeing very warm. But I had to get back on the antibiotics since I was in a lot more pain in my bones, muscles and body. My “stone man” was increasingly worse. I am having cold spots and neuropathy down my spine.

I have listed all of my symptoms on a previous post and there are 100’s so I won’t list them here but they are all still with me. I was hoping to go out for walks when Spring gets here but that is looking like it may not happen with this pain, vertigo and dizziness.

I will also be trying a Homeopathic treatment that should be coming in the mail real soon and I may post about it. I am also thinking about trying rifing again one day. Need to stop these bugs from having a party in my body.

I will try to update as much as I can but I haven’t had many “good” days. I hope all of my spoonie and Lymie friends are having better luck in your lyme healing journey. Keep up the fight and never ever give up life is too beautiful and there are many good days ahead. Take care for now friends.

 

– I will continue to spread Lyme awareness in Jeremiah’s name. He will be missed.

 

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Neuro Flare – Vertigo, Tipsy, Off-Balance, Tachy, Brady, POTS, Candida…

15 Feb

slip-man-hi

 

Neuro Flare – Vertigo, Tipsy, Off-Balance, Tachy, Brady, POTS, Candida, Insomnia…

First off … Happy Valentines Day to all of those who are lucky enough to have someone in your life who cares for you and you found love.

My Valentines was a rough one. First it started with my old friend insomnia keeping me up all night and all month nearly. Many people use the word ‘insomnia’ to describe staying up one hour past bed their bed time but to us true sufferers it means we stay up for days with little to no sleep at all. I couldn’t take staring at the ceiling in bed anymore so I got up and laid in my chair watching NCIS reruns all day. Then the tremors started getting worse.

I put on my PulseOX and my heart numbers fluctuated between 100’s (tachycardia) and shot down to the 50’s (bradycardia) within 2 seconds then back up/down and repeat. This is common when suffering from Postural Orthostatic Tachycardia Syndrome (POTS) which I have been DX’d with. My Oxygen levels went from 98% (normal) and went down to 89% (bad) just reaching for the remote and stayed at 89% setting the alarm off. I wasn’t too short of breath though.

More towards the evening the Neuro problems started to get worse then usual. I felt as if I was on a boat in choppy waters. I would stand up and look like I was starting a new dance craze. The best way to describe how I was walking is like a really drunk person in a wet suit with flippers on indoors. I’m sure it looked funny but it wasn’t fun. Vertigo set in so my depth perception was off and I was really dizzy, tipsy, off-balance and had all three types of vertigo at once; pseudovertigo, subjective and objective.

“There are three types of vertigo. The first is known as objectiveand describes when the patient has the sensation that objects in the environment are moving; the second is known as subjectiveand refers to when the patient feels as if he or she is moving, and the third is known as pseudovertigo,an intensive sensation of rotation inside the patient’s head.”

My usual “stone man” set in about 6pm as I have describe this before in an earlier blog post. To keep it short I feel like I turn to stone or rust up and can’t move in severe pain. It happens like clock work every night. The only thing that takes the edge off is my pain killers and time. My stomach started to ache about this time and I had sharp pains and bubble guts. It was more of a Candida issue and not the pain of C-diff which I had last year. Won’t go into detail on that or TMI. ha ha

Here it is 1 AM and things are finally starting to settle. I still feel very tachy in my chest and in my nerves. I truly believe stopping antibiotics has allowed Lyme and coinfections like my Babesia to thrive again. I will be starting a schedule to go back on antibiotics soon, I just don’t want that C-Diff or Candida outbreak again so a lot of probiotics it is. I think this proves that my Lyme disease and coinfections are very real and still active after 2 years of aggressive antibiotics treatment, injections, Picc … etc which the CDC (not a fan) says Lyme is cured with up to 10 days of antibiotic treatment (lies).

Not complaining in this post really I just like to share my real experiences and my daily life  to help others and answer questions. I am at peace with all my illnesses and I am an optimist who just wants to spread awareness. Hope everyone had a better day/night and that your lyme/chronic illness healing journey is going well. Take care for now…

 

 

 

 

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May Is Lyme Awareness Month – Be Extra Cautious This Year For Ticks

17 May

May Means Lyme Awareness

Today I had an hour long interview with my local newspaper. They will be publishing my story for Lyme Awareness Month. My goal was to get the word out there and make people aware of this debilitating disease. If I can reach just one person this year then I will be happy. If that person does not have to suffer and go through what myself and many others are going through I feel as if I saved a life.

I know many of you who do not have Lyme disease or who do not know much about Lyme disease see posts about Lyme Awareness. I was one of those people who had no idea what Lyme disease was and I used to take nature walks frequently. I would always find deer ticks on my clothing after a day of hiking and exploring.

It took only one small tick to bite me and change my life forever. 25 plus years later and I wish I could go back in time and tell myself to stay away from the fields and tall grass I once found fun to walk through. Myself and too many others are living in the endless nightmare and we cannot wake up from it.

This year is the perfect storm for ticks. The weather and condition are just right meaning even more ticks will be out looking for a host to attach to. Ticks carrying Lyme disease are already being found. So this year is going to be one of the worst year yet and now is the time to be prepared.

I want to get the word out there that getting Lyme disease can happen to anyone of you and any family member no matter how big or small. Not only can the ticks, mosquitoes and other critters give you Lyme disease but you can also get coinfections or tick-borne diseases. Just one coinfection such as Babesia can ruin your life. They are easier to get than you think.

The numbers are in and have shown that the cases of Lyme disease are up to 4X higher than the cases of AIDS each year. Since many people are improperly diagnosed those numbers can even be higher.Lyme disease and coinfections can be fatal.

Please be extra cautious when you go outdoors. You pets can bring the infected ticks into your home. My sister has already had 3 ticks brought in by her cat this year. In a recent study there were 8 ticks who tested positive for Lyme disease from numerous parks in the Placer are of California. Just a play date at the park with your kids may mean one of your family members could have been bitten by one of those ticks.

I don’t want to scare anyone from enjoying the outdoors and the Spring and Summer weather but just be alert and know what to do if you find a tick on you. I am too scared to go outdoors now that I know what pain, suffering and life changing events one bug has caused me. I can get bitten again and contract Lyme or even a new tick-borne infection.

Please remember that the international disease society of america (IDSA) is our enemy and do not believe anything they say.  They are the ones who have no proof that 2 weeks of antibiotics can “cure” you yet they set ridiculous guidelines for us who suffer. Thanks to their guidelines we cannot get the proper medication, health care and insurance coverage we need.

Please take time to view the information below on how to protect yourself from ticks and which ticks are carriers. Remember Mosquitoes also carry many diseases so put your spray on and stay covered up.

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Click Here – How To Protect Yourself From Ticks

Click Here – Other Infections (Coinfections) From Ticks

Click Here – Know Your Ticks

Click Here – Borrelia Facts

Click Here – Lyme Disease Handout Forms For Field Trips

Please visit LymeDisease.org for more information. This is a very useful web site and recommended and trusted in the Lyme community. You cannot trust many web sites out there since they like to cover up or lie about Lyme disease.

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http://www.lymedisease.org/

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You Think You May Have Lyme Disease – Now What Do You Do?

12 Apr

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New Treatment – More Injections & Possible IV

25 Jan

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