New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

Traci
Regular Member


Date Joined Mar 2017
Total Posts : 99
   Posted 12/16/2017 11:32 PM (GMT -6)   
I've been very sick. But this week has been scary. My blood pressure has been low but i have been getting pots symptoms. I feel so weak my whole body feels heavy. I'm having body aches mainly in my back and shoulder blades as well as legs. Neuro symptoms are bad but its been mainly my heart and weakness. I haven't been able to leave my house because my heart is acting up. I tried to go somewhere and ended up in the er because my heartrate and blood pressure spiked high. Can someone please give me some hope that this will pass. I'm so scared my heart is just going to fail on me. I'm really scared.

mareish
Regular Member


Date Joined Mar 2017
Total Posts : 221
   Posted 12/16/2017 11:36 PM (GMT -6)   
Sorry, Traci. I have been experiencing pretty much exactly what you describe for the last week.

The only hope I can offer is that I have been through this same cycle many times and it does eventually resolve, for me.

Yes, it is scary.

Are you treating?
Quest Elisa Lyme positive 2/2017
Igenex Lyme WB igm positive 3/2017 and July '17
Quest Ehrlichia positive 3/2017 neg. July '17
Igenex Bartonella positive 4/2017 neg. July '17
CD57 30 in 4/2017 12 in July '17

The Dude Abides
Veteran Member


Date Joined May 2017
Total Posts : 1157
   Posted 12/17/2017 1:25 AM (GMT -6)   
Hi, Traci:

I'm very sorry that you're having to deal with all of this stuff. Given all the symptoms you mentioned, it's understandable that you're scared. But, I'd like to offer you some suggestions...and, some hope.

My most recent bout with illness started over four years ago. Since that time, I've had ALL the symptoms you mentioned -- and, like many people here, even more.

I've had extreme fatigue this entire time and still do. But, sometimes, even though I didn't think it was possible, I felt even MORE tired. "Heavy," like you mentioned. My pulse would be slow and weak. I felt as if my heart might just stop at any moment.

This happened a few times, while driving. One of those times, fortunately, my girlfriend was riding with me. I say fortunately, only because I was terrified and was thankful to have someone with me. In addition to feeling heavy, my pulse felt weak and I felt a bit faint/dizzy. Then, as I paid more mental attention to it and started to worry, of course, by pulse skyrocketed and my breathing followed.

I managed to hold myself together long enough to into a parking lot of a strip mall that had a juice bar. I thought perhaps I needed something sugary, in order to help spike my blood sugar. My wonderfully patient and understanding girlfriend went to get me a juice, while I reclined my seat a bit, closed my eyes, and tried to calm my breathing and talk myself down from the anxiety.

In the next parking lot over was a pharmacy. Next to that, an Urgent Care center. Bingo. Of course, I made a beeline for the clinic. I mentioned what was going-on and that I felt pressure in my chest. That won me an immediate EKG. The results were astonishingly...unremarkable. Totally normal. Even worse, everything looked great.

Normally, a diagnosis of "Normal" or "Great" would be...well, great. But, if you've been down the path I have -- and, I suspect you have -- you're probably tired of hearing your "Normal" when you feel everything BUT normal.

And, so it went.

Month-after-month, year-after-year, I was going to Urgent Care clinics and Emergency Rooms -- twice, by ambulance. Nights, weekends, and even having to leave work to go. After a few times of telling my boss and colleagues, I knew they had to think I was either faking it or crazy. I have the credit card receipts to prove the visits and I eventually started to wonder if maybe I was crazy.

Eventually, I saw not one Cardiologist, but two. I had full cardiac workups and received a result of...you guessed it, "Normal." In addition to the two in-clinic cardiac workups, I also had one overnight admission to the hospital, one in-home cardiac monitoring device I wore for 24 hours, and, of course, all the EKGs that I had during my trips to the Urgent Care clinics and the Emergency Rooms.

As if that wasn't enough, I also requested a Carotid Intima-Media Thickness (CIMT) test, to check my carotid arteries for atherosclerosis. Luckily, my Doctor's office had the equipment to perform the test. Want to guess the result? If you said "Normal," you would be correct.

So, at that point, I knew everything was okay and I could stop worrying. Only, I couldn't.

No, I wouldn't feel confident, until I had a Coronary Artery Calcium (CAC) score to check for atherosclerosis, by using a CT scanner to measure the amount of calcium, if any, in the walls of the arteries that feed my heart. So, I went to a local imaging clinic and shelled-out about $90 to have the test. A score of zero means no identifiable atherosclerotic plaque. My score? Zero, thankfully.

That was finally the point (for real) that I concluded that my heart and arteries were fine.

Did the episodes continue? Yes.

But, because I had stacks of verifiable test results that my heart, coronary arteries, and carotid arteries were fine, I no longer felt the need to go to the Urgent Care clinic or Emergency Room. I took things easy, did whatever I could to reduce any stress, was gentle with myself, and, eventually, the episodes passed.

Did this happen overnight? No.

For a while, I would drive to an Urgent Care clinic or Emergency Room and just sit in my car in the parking lot. I gave myself permission to go in, if needed. But, in that moment, it wasn't necessary, so I would check again in the next moment. I was still doing okay, so I gave it another moment. Before long, I was feeling better and drove home.

So, after that long-winded story, my advice is to do whatever you can to get yourself checked-out to the level that gives you comfort and peace of mind. It doesn't need to be to the level of obsessiveness that I required. But, if that's what it takes for you, that's perfectly fine, too. This is about YOU!

Otherwise, treat yourself well, get plenty of sleep/rest, eat as well as you can, and consider getting checked for vitamin and mineral deficiencies. I don't think that serum (blood) tests are the best. Rather, you need to know what's the status inside your cells.

Finally, as of this writing, it's probably been a year, since I've felt the need to see a Doctor with concerns about my heart. My heart-related symptoms (and, associated fears/anxiety) have improved greatly. My POTS symptoms are rare and usually only affect me when bending forward for an extended period of time. I had a minor episode today, in fact, as I was in the yard picking-up trash that a bear had pulled from my garbage can. But, I sat for a bit and it got a little better. An hour or so later, I was back to "normal." I still have other joint/muscle aches and pains that come-and-go. Some vision stuff, some neurological stuff. But, over time, it seems to slowly be getting better. This is a marathon, not a sprint. Slow and steady wins the race.

I hope this helps. Moreover, I wish you the best and hope you find what's needed for peace and healing.

Sincerely,
The Dude

"I didn't have time to write a short letter, so I wrote a long one instead."
― Mark Twain

.

Post Edited (The Dude Abides) : 12/17/2017 12:41:08 PM (GMT-7)


Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33852
   Posted 12/17/2017 1:40 AM (GMT -6)   
Traci said...
I've been very sick. But this week has been scary. My blood pressure has been low but i have been getting pots symptoms. I feel so weak my whole body feels heavy. I'm having body aches mainly in my back and shoulder blades as well as legs. Neuro symptoms are bad but its been mainly my heart and weakness. I haven't been able to leave my house because my heart is acting up. I tried to go somewhere and ended up in the er because my heartrate and blood pressure spiked high. Can someone please give me some hope that this will pass. I'm so scared my heart is just going to fail on me. I'm really scared.


Traci, I'm so sorry you're going through this.

I also get POTS symptoms, but mine are considered mild compared to what many experience.

It will get better with treatment and time. Not just treatment....not just time...but both.
I have been scared many times with this disease...to the point of tears.
I used to cry on a daily basis...but I don't anymore...
Things will get better...it is just such an agonizingly slow process.

Maybe it would be good to get your heart checked out so you know that it's fine.

One question I have - are you detoxing?
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33852
   Posted 12/17/2017 1:57 AM (GMT -6)   
Dude - thanks for your thoughtful post. Good to hear you are improving.

I know what you mean about doing all the 'checks'.

I did that when I had a high cortisol blood test result.
It was followed up with a dexamethasone challenge...and it showed everything was fine...according to the endocrinologist.
But, I wasn't satisfied...I then had a CT scan of my adrenal glands to rule out a tumor....that still wasn't enough.
I then paid for a dye-enhanced mri of my pituitary gland to rule out a tumor there.

The scan and mri weren't really necessary according to my Dr.

A few months later, I had low vitamin d show up. My Dr. ordered a calcium and parathyroid test.
While I was waiting for the results, I looked up parathyroid tumor....and by the end of the day, I thought that's what I had. I searched for a surgeon - found what appeared to be the 'best' one in the U.S. for removing the tumor I had...and asked my husband if I did indeed need surgery - could we remortgage out house.

Well, my calcium and parathyroid hormone levels were good.


****Dude - I'm not saying you were/are hysterical - when it involves the heart...it can be extremely disconcerting - but in my case - the test results...didn't really warrant the follow-up I chose to do to put my mind at ease.*****

I blame it all on lyme induced hysteria. Months of bizarre symptoms.....new ones appearing weekly....just too much to take in.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

The Dude Abides
Veteran Member


Date Joined May 2017
Total Posts : 1157
   Posted 12/17/2017 2:10 AM (GMT -6)   
Oh, I was definitely hysterical at times, Girlie! There's no shame in it, as none of us chose these dreadful afflictions. Besides, I like being called "hysterical." Granted, I'd prefer it in the context of being funny, but I'll take what I can get!

goshawk
Forum Moderator


Date Joined Sep 2016
Total Posts : 2295
   Posted 12/17/2017 5:35 AM (GMT -6)   
Hi Traci,

Just stopping by to say I hope you have a better day today.

In the beginning I also had heart issues and strange episodes but with time and treatment it has gotten better.

It might help to ease your mind if you were able to find an llmd that is more specialized in that area.

I believe there are some out there that are more specifically treating heart , just like there are some neurologist that are Lyme literate.

Please take care and thinking of you, Jo


Also the herbal Hawthorne is protective for the heart if you want to check it out, just be sure about side effects and contradictions.

Post Edited (goshawk) : 12/17/2017 3:38:22 AM (GMT-7)


Archer16
New Member


Date Joined Dec 2017
Total Posts : 2
   Posted 12/17/2017 8:48 AM (GMT -6)   
My heart goes out to you Traci! I don't have any advice for you because I have a lot of the same issues and I am unable to find a LLMD to get further treatment, much lessential one that will even listen to me about PTLD!!! I just wanted to say I understand and will be praying for you and all who suffer from this HORRIBLE disease and are struggling with getting accurate treatment. If you need an ear feel free to email me!!

magoo2
Veteran Member


Date Joined Mar 2015
Total Posts : 1301
   Posted 12/17/2017 9:26 AM (GMT -6)   
Maybe you need a new doctor. Sometime they miss something.
Get Yolonda's book called Believe Me. The book has a good ending-she is basically healed.
She did try many things to her program-some of which you may consider adding.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33852
   Posted 12/17/2017 12:24 PM (GMT -6)   
Archer16 said...
My heart goes out to you Traci! I don't have any advice for you because I have a lot of the same issues and I am unable to find a LLMD to get further treatment, much lessential one that will even listen to me about PTLD!!! I just wanted to say I understand and will be praying for you and all who suffer from this HORRIBLE disease and are struggling with getting accurate treatment. If you need an ear feel free to email me!!


Archer - If you have symptoms, you should be able to find a LLMD to continue treatment.

I don't like the term PTLD. It refers to symptoms leftover after treatment (often just a few weeks of treatment) that aren't recognized as active disease and are untreatable.

You need to find another LLMD.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

PeppermintTea
Regular Member


Date Joined Oct 2014
Total Posts : 266
   Posted 12/17/2017 12:28 PM (GMT -6)   
Girlie said...
Archer16 said...

I don't like the term PTLD. It refers to symptoms leftover after treatment (often just a few weeks of treatment) that aren't recognized as active disease and are untreatable.
.


I suggest we change the diagnosis PTLD to Poorly Treated Lyme Disease ;)

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9729
   Posted 12/17/2017 12:33 PM (GMT -6)   
Dude, what a wonderful post.

I too have sat wondering if I call Life Flight for an air ambulance ride due to heart issues from lyme. I was so afraid that I should call but didn't want to be embarrassed if it was "nothing."

I so agree with your post

But, because I had stacks of verifiable test results that my heart and coronary and carotid were fine, I no longer felt the need to go to the Urgent Care clinic or Emergency Room. I took things easy, did whatever I could to reduce any stress, was gentle with myself, and, eventually, the episodes passed.

This is how I handled it too. I eliminated all the horribly bad that a test could and then knew it was lyme and it would take time.

Thanks again for your post. I bet a lot of people are helped by it.

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 33852
   Posted 12/17/2017 12:39 PM (GMT -6)   
PeppermintTea said...
Girlie said...
Archer16 said...

I don't like the term PTLD. It refers to symptoms leftover after treatment (often just a few weeks of treatment) that aren't recognized as active disease and are untreatable.
.


I suggest we change the diagnosis PTLD to Poorly Treated Lyme Disease ;)






YES - perfect, PPT.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

The Dude Abides
Veteran Member


Date Joined May 2017
Total Posts : 1157
   Posted 12/17/2017 2:46 PM (GMT -6)   
PeteZa said...
Dude, what a wonderful post.

I too have sat wondering if I call Life Flight for an air ambulance ride due to heart issues from lyme. I was so afraid that I should call but didn't want to be embarrassed if it was "nothing."

I so agree with your post

But, because I had stacks of verifiable test results that my heart and coronary and carotid were fine, I no longer felt the need to go to the Urgent Care clinic or Emergency Room. I took things easy, did whatever I could to reduce any stress, was gentle with myself, and, eventually, the episodes passed.

This is how I handled it too. I eliminated all the horribly bad that a test could and then knew it was lyme and it would take time.

Thanks again for your post. I bet a lot of people are helped by it.


Thank you, PeteZa. I appreciate you taking two hours to read that entire post! smile Even if only one person is helped by it, I would be happy.

Traci
Regular Member


Date Joined Mar 2017
Total Posts : 99
   Posted 12/17/2017 11:20 PM (GMT -6)   
Mariesh- Thank you. And I'm waiting for my appointment for my llmd January 23rd. In the meantime I'm just doing Japanese knotweed, ACS silver, probiotics, multivitamin, and liposomal glutathione.

Traci
Regular Member


Date Joined Mar 2017
Total Posts : 99
   Posted 12/17/2017 11:25 PM (GMT -6)   
The Dude-- Thank you so much for easy my mind. I haven't been able to get out of bed much or leave my house my heart rate's been spiking up too high. I'm also kind of scared because I'm not treating properly I'm waiting on my Lyme literate doctor's appointment but it is not until January 23rd. Just doing minor things for right now. I've never had so many near-death experiences so it seems and it's very scary. I just pray you're right and I'm just being anxious about it and that this will go away or at least ease up on me. Thanks The dude for telling me that it makes me feel a lot better.

Traci
Regular Member


Date Joined Mar 2017
Total Posts : 99
   Posted 12/17/2017 11:29 PM (GMT -6)   
Girlie- thank you Girly, and I'm doing Lemon water right now, I was doing charcoal tablets, salt baths but I haven't had any energy I've been extremely weak.

Traci
Regular Member


Date Joined Mar 2017
Total Posts : 99
   Posted 12/17/2017 11:31 PM (GMT -6)   
goshawk- Thank you! I heard about that herb and I really think I going to get it!

Traci
Regular Member


Date Joined Mar 2017
Total Posts : 99
   Posted 12/17/2017 11:34 PM (GMT -6)   
Acher16- thank you I really appreciate it's nice to know that I'm not alone! This is an evil disease.

Traci
Regular Member


Date Joined Mar 2017
Total Posts : 99
   Posted 12/17/2017 11:36 PM (GMT -6)   
magoo2- Thank you. I'm seeing a Lyme doc in January.

The Dude Abides
Veteran Member


Date Joined May 2017
Total Posts : 1157
   Posted 12/18/2017 12:35 AM (GMT -6)   
Traci said...
The Dude-- Thank you so much for easy my mind. I haven't been able to get out of bed much or leave my house my heart rate's been spiking up too high. I'm also kind of scared because I'm not treating properly I'm waiting on my Lyme literate doctor's appointment but it is not until January 23rd. Just doing minor things for right now. I've never had so many near-death experiences so it seems and it's very scary. I just pray you're right and I'm just being anxious about it and that this will go away or at least ease up on me. Thanks The dude for telling me that it makes me feel a lot better.


It was my pleasure, Traci. While reading your initial post, my heart just broke for you, because I could really identify with your situation. If my previous reply helped a bit, I'm beyond delighted.

I would guess that anxiety is almost certainly playing a part, but the Lyme and/or Co-Infections are likely the underlying cause. These infections manifest in the weirdest of ways and make our body systems go haywire. Well, this is "normal" for Lyme and Co-Infections, but very abnormal, compared to a healthy person. So, I would encourage you to do your best to remind yourself of this, whenever things go berserk.

Until you can see your LLMD on January 23rd, do you have a regular Primary Care Physician (PCP) you could see, in hopes of having yourself checked-out for things like your heart and POTS? Of course, a PCP's testing would be limited, with regard to the heart. But, a PCP could refer you to a Cardiologist.

One of the tests a Cardiologist could order is a "Holter Monitor" device for you to wear for 24 hours (perhaps longer), in order to continuously measure and record your heart's activity via Electrocardiogram (ECG). That information would then guide the Cardiologist in what to do next, if anything. I wore one of these battery-powered devices myself, for 24 hours, as every time I was at the Doctor's office, my heart rhythm was normal. But, the Holter Monitor can catch and record the events.

Anyway, I'm not sure what your situation is, with regard to insurance, finances, assistance getting to/from appointments, etc. But, I'm just trying to think of ways to help get you some concrete information, and, in turn, some peace of mind.

I cannot overstate how much our thinking affects our bodies. Unfortunately, I tend to be extremely hypervigilant -- noticing every little sensation that is new or different than expected. No matter how much I try not to pay attention to it with my conscious mind, my subconscious mind is always on the job. Thank God I didn't go to medical school, as I would have definitely suffered with Medical Students' Disease!

Take things easy, be kind to yourself, and stay connected and engaged with others.

Sending you prayers and only the best wishes.

Sincerely,
The Dude
New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, August 16, 2018 5:10 PM (GMT -6)
There are a total of 2,993,419 posts in 328,043 threads.
View Active Threads


Who's Online
This forum has 161225 registered members. Please welcome our newest member, wendigomike.
301 Guest(s), 10 Registered Member(s) are currently online.  Details
PeterDisAbelard., Artist Mark, SueLP, Tudpock18, Pratoman, wendigomike, InTheShop, commandersorebod, kit49, lapilot