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» LymeNet Flash » Questions and Discussion » Medical Questions » Me again. need your thoughts and help w how to tell doc

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Author Topic: Me again. need your thoughts and help w how to tell doc
HK
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...about my every sepsis symptom, i have been feeling to a t. From what ive researched this far, sepsis can stick around for awhile before putting your organs down one by one. Yes, yes I'm very aware my posts are extreme which is screaming insanity to those v listening, but i have this feeling. Good i hope not. will guess it'll be what it'll be. I was never a hypogandriac or obsessive,and still aren't. I never even let lyme cross my mind during the 5 glorious years i was well.

Alright so I'm not gonna go back and forth looking up every professional terminology sx right now, but there's not one I'm not suffering from.

And yes, lyme folks suffor from just just about every gosh darn symptom in the vwor. but i have a bad feeling, its just too strange.

Again quick tine line (from what I remember at the moment)
Dec - aborton

Jan dx w tachy / saw psych n was prescribed adderall (which ms Keebler) I'm allergic to. All the no-nothing docs (bout 6) kept pushing the damn drug in me too. I'd be telling them ...well it could be the adderall, right? i mean, it's possible considering I become nightmarishly ill at the same time every day - when the meds are wearing off. But every one of them was like NOOOOOO TAKE YOUR ADDERALL. Kinda strange. They really do want people to die ha well some at least

Feb - had effects of tachycardia and worsening brain stuff


March - started feeling actual pain in heart and very weak and VERY fogged.

April - lots of hospitals, and lots of horrifying stroke/ heart episodes. lIke feelings, missed my son's 5t h bdat party ):

May dx w arrythmia, but it hasn't been fouNd again

And now EVERY sx of sepsis INCLUDING all of the important 4. Uti Semi low platelet count, raised white and n red blood cells, and vascular issues (since starting add too ):... swelling, tingling, numbness, and just everything to the max.

How do I go about telling my dr tomorrow without sounding crazy.he's also actually my best friends hang out buddy haha. he probably thinks I'm nutso for being repeatedly hospitalized and thinking i was dying. Well if death feels like thaaat, I'm begging the man upstairs to keep me up there. I wish the health folk better understood what this really does to yout everything. , nd how severe and disabling, the lyme fight and flight mode can be. Yeah, so i need to word this the right way before he labels me a hypochondriac.

Anyone w experience, thoughts, ideas. I'd really appreciate it♡♡♡

hope everyone's having an okay day, and enjoying the beautiful weather !

--------------------
Back At It

Posts: 203 | From NJ | Registered: Feb 2015  |  IP: Logged | Report this post to a Moderator
lymeboy
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My first thought is to go to a different doc than one who's involved with your friends or family. Maybe find a LLMD.

Lyme can be a nightmare when you're involved with people who don't understand or believe you.

If you're worried that your doc will label you a hypochondriac, you should find a new one.

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Robin123
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Agreed - you need to see a Lyme doctor who takes you and your symptoms seriously. You can post in the Seeking A Doctor section for PM suggestions.
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Edessajarrue
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Hi HK

Sorry you are going through such scary medical issues.


I didn't see any older posts here, so I am just throwing out some thoughts .

Not sure why you were prescribed adderal. However, I believe we should listen to ourselves, our instincts. Sounds like you mind and intuition is telling you that adderall is not a good drug for your body.

I use my intuition as a powerful guide to what my body may need. I don't take certain drugs offered because intuitively I believe my body will not react favorably. If I already have it in my mind as a negative, it will react negatively in body.

Are you still taking Adderall? If you are, insist your doctor wean you off of it and see if some of your sx lessen.

Adderall can cause tachycardia among other medical issues.

Unfortunately, any damage a drug has done still needs to be dealt with. SX may lessen and your body will attempt to heal itself as best as possible.

Sepsis is definitely serious. Keep on talking to your doctors about your concerns. Talktalktalk, research, show them symptoms via articles, medical abstracts, ect and how they match your symptoms.

If these major medical events all started after your abortion (your timeline above shows that as your first major medical event after tick bite), make sure you tell your doctors that.

Have you been to a gynecologist since? Maybe there is dead tissue left that wasn't removed during the procedure? That can make you very ill.

You may have an undiagnosed tick bite infections beside lyme. Do you have a really good Lyme doctor? I mean, like one of the top well known ones. Seriously.


I believe you are very sick. Doctor's are not gods, though many think they are. If you need to transfer to a new doctor, make sure you research them and get referrals. There are doctor's who will listen and go above and beyond to help you, however, they tend to be rare and they are out there.

-Edessa

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Keebler
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Good suggestions in all above replies.

You say that you need help telling your doctor about your "every sepsis symptom" (end quote)

Definition really matter here. Sepsis / Septic Shock is typically an emergency situation. While it's clear you have very serious symptoms, it's most likely that if you tell a doctor about your "every sepsis symptom" you will be rejected.

The KIND of doctor you have is not equipped to understand the full range of what you are dealing with, it sure sounds like . . . otherwise, you'd have far better advice prior to this.

I do see your point in the symptoms, however, and you deserve a doctor who can address fully, competently.

I don't see how that's going to happen with the doctor you have now.

Given there are some (you might call them) similarities between the DEGREE of toxicity / liver inabilities / kidney issues, etc. and sepsis . . . in how the body works / doesn't that are discussed here, with some things that should help.

http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=131896;p=0

Sepsis / Septic Shock

Kidney & Liver safety & support here, too.
-

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Keebler
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Did you ever get this checked out? I don't see any follow up post to the issue.
http://flash.lymenet.org/scripts/ultimatebb.cgi/topic/1/131086?#000000

Your questions about scratch / photo

Looks like Bartonella photo here that you posted on 6 February, 2015.

Some of the symptoms you describe with RBC sound like Babesia.

Have you seen a LLMD since you've experienced all these symptoms again? Looking over your posting history of past few months I don't seem to see that you are seeing a LLMD but some of the Rx (not antibiotics but stimulants) for symptoms are very concerning as they can really cause major trouble.

Is there anyway you can see a LLMD or LL ND?

Those scratches DO look like they could be bartonella. NOT stretch marks, at all, IMO.

You did not seem to think so but a LLMD really needs to assess all this.

I see, though, that you posted a few weeks ago:

"I am a 28yo single mother in NJ
W a low income. What insurance options do i have?" (end quote)

Still, talk with those in your area lyme support groups.

There may also be some things you could do on your own - or at least be clearer on what to avoid.

I'm sorry you are in this position. Still, a doctor is who not equipped to treat you is still not a doctor to stick with.
-

[ 06-09-2015, 03:50 PM: Message edited by: Keebler ]

Posts: 48021 | From Tree House | Registered: Jul 2007  |  IP: Logged | Report this post to a Moderator
Keebler
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Tomorrow:

There should be no reason that you could not finally be tested for BARTONELLA, though, by the regular medical system.

You might ask your local lyme support group which doctor might be most open to this who might be covered by your insurance.

Or - straight out - get right to that point in with your current doctor. Those scratches you posted are very clearly, very suspect for bartonella. Even if marks are gone, you should have a proper test.

Take that photo with you . . . and notes about the marks, no matter what you "think" they are -- just share the facts. Marks, appearance, characteristics, etc.

Do you have a cat? Have you been around cats?

Cat's are not the only way to acquire bartonella (cat scratch fever) but if you have a cat, that should be made known and the cat should be assessed as well.

While you may have various things going on, this seems most likely to be something that you might be able to get assessed and

it is of vital importance. Tomorrow's doctor appointment: address possibility of bartonella.

There are so many reasons I'm sort of shouting this but just don't have the energy to make all my points. But SO MANY of your symptoms could be due to Bartonella.

Today: contact your area lyme support groups and ask what labs do the best tests for bartonella and ask if there is there are things to know when you request a test or have blood drawn, such as time of day, day of week, etc.

Tomorrow's appointment: Please start with BARTONELLA. Have those photos and just say that so many of your symptoms match but the photo alone should get you the test.

Remember that, with any degree of liver / kidney distress all the way to its most severe and urgent state of sepsis, there is a REASON for it, a CAUSE.

So, while a doctor is not likely to categorize your symptoms as sepsis - and few really get into the liver / kidneys stress as we might here --

its the CAUSE of symptoms that are important to identify and address.

Not sure if I even have the energy to ask but in February, in the rash post above, you stated that you had a recurrence of lyme and were taking Bactrim DS.

So, I'm to assume that the doctor who prescribed that would be at least somewhat lyme literate but seems like it was just a quick shot in the dark and not really assertive treatment.

I just have to stop now. I do hope your appointment has some productive note to it tomorrow. One step at a time while you seek suggestions from your local support groups.
-

[ 06-09-2015, 04:41 PM: Message edited by: Keebler ]

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Keebler
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Oh, just in case Bartonella's nick-name is confusing "Cat Scratch Fever" - the marks that may show do NOT need to be from an actual scratch.

They may appear where scratched by a cat -- or where a cat has licked a scratch on your skin -- but the marks can appear anywhere on the body, even if the light of day nor paw of cat has touched.
-

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beaches
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You might not want to start a dialogue with a doc by listing your sepsis symptoms. If you were septic, you'd be dead by now.
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A.G.
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(edited)

Agree with beaches.

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Keebler
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Everyone seems to agree that it would not be wise, nor applicable to "go" into a conversation about sepsis as a possible explanation for your symptoms. Use of this term will likely backfire.

Be sure to read this - from a link posted above - before your appointment so that the definition of this is very clear. The intensity of sepsis is far beyond the toxicities & effects of chronic infections.

With sepsis, the body can go into a full life-threatening shock very, very fast.

http://www.healthline.com/health/septic-shock#Overview1

Septic Shock - HealthLine
-

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Lymetoo
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Just find a good doctor and let them diagnose you. This chasing of sepsis is not helpful to you.

--------------------
--Lymetutu--
Opinions, not medical advice!

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A.G.
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Here's an analogy to help you realize the urgency of sepsis vs what you have:

Take a gunshot wound. If you had that, you would know it's life threatening, or at least the people around would know something was horribly wrong and get you an ambulance FAST.

There would be a foreign object, blood and pain and probably lab abnormalities.But you would be in no physical nor mental state to research anything.You probably couldn't think.

Then take a thorn or splinter or ingrown toenail or piece of glass in your foot that's been there for several months. Infection could set in which needs to be addressed by a Dr.

There's a foreign object and may be pain, blood and lab abnormalities...so those signs and symptoms would match up with a gunshot wound to a t. However, if you showed up to the ER complaining of a gunshot wound, that would be odd.

If you went to your Dr saying I have a gunshot wound, that would also be odd. Because just because the symptoms appear to fit ..it's nowhere near a gunshot wound.

This is how sepsis is vs your chronic issue.

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Keebler
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A.G.

Good analogy. Merci.
-

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Lymetoo
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Thanks for the analogy, AG!

Those "symptoms checkers" on the internet can really mess us up sometimes!

--------------------
--Lymetutu--
Opinions, not medical advice!

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Keebler
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HK,

How did yesterday's appointment go? Were you able to discuss Bartonella &/or get other input?
-

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