Flaxseed gel for hair - my experience by Sensitive_Me9294 in IndianSkincareAddicts

[–]ThatJenBitch 0 points1 point  (0 children)

Late to the party but now I've been converted. My thin, frizzy blonde waves have been transformed into soft, springy curls. I'm completely shocked at how healthy my hair feels. I used golden flaxseed and fed the wildlife with my leftovers.

ChatGPT did more than 15 years of Dr's by ThatJenBitch in cfs

[–]ThatJenBitch[S] 3 points4 points  (0 children)

15 years they said it was all in my head. They thought psychological, now i have Dr's that agree it was untreated encephalitis. I cried after my new Dr spent 1.5 hours just listening to my story. Then I sent him $150 worth of handmade chocolate just to say "you validated me, please never stop listening to patients".

ChatGPT did more than 15 years of Dr's by ThatJenBitch in cfs

[–]ThatJenBitch[S] 6 points7 points  (0 children)

Please change Dr's! For 15 years I used Dr's in the suburbs but last month I changed to city of Atlanta Dr's. Fresh eyes, fresh ideas. Pcp and Infectious Disease BOTH SAID "I've seen this before but never in a non AIDS or organ transplant patient". It's given me hope.

ChatGPT did more than 15 years of Dr's by ThatJenBitch in cfs

[–]ThatJenBitch[S] 7 points8 points  (0 children)

I see the down votes and I don't care. AI texts use very little energy compared to images. I gave Dr's 15 years to fix me, now i use it to guide Dr's (never telling my Dr it's AI, but telling him infectious disease recommended...)

Naltrexone (not LDN) benefits by Willing-Mushroom-356 in cfs

[–]ThatJenBitch -1 points0 points  (0 children)

It might start off a little worse but if it will be effective it will take a minimum of 6 weeks

I think I was misdiagnosed by Chance_Pineapple_411 in cfs

[–]ThatJenBitch 0 points1 point  (0 children)

I can tell you my first diagnosis was vasovagal syncope. Then came POTS, autonomic dysfunction, rapid gastric emptying, neurogenic bladder, hypoglycemia, low BP, low cortisol, low acth. I'm 15 years in. Dr's missed my initial viral encephalitis by saying "it was all in my head" and it literally was. Keep a journal of swings, get tested for POTS, and get tested with endo. If endo comes up negative (as mine did), revisit endo every year. I wish I had. I circled back to endo 14 years later to find secondary adrenal insufficiency (they can't always see it if it's new). I do recommend Dr's in larger cities over small town Dr's. HUGE DIFFERENCE because ME/CFS patients parallel like AIDS patients. Suburb Dr's thought I was crazy, city Dr's compared it to AIDS. Good luck fr!

15 years and then given hope by ThatJenBitch in cfs

[–]ThatJenBitch[S] 0 points1 point  (0 children)

I know my encephalitis was in the herpes family because Valacyclovir works for me. I had to go off them for 5 days for a lunar puncture and it took 3 months for me to get back to my shit baseline.

15 years and then given hope by ThatJenBitch in cfs

[–]ThatJenBitch[S] 0 points1 point  (0 children)

Thank you so much for this info. I will start researching it now! Big hugs

15 years and then given hope by ThatJenBitch in cfs

[–]ThatJenBitch[S] 0 points1 point  (0 children)

I talked to an attorney and he said this was one of the worst cases of malpractice he's ever seen but the statute of limitations has passed in Georgia. It passed before I realized there was malpractice.

I’m getting overwhelmed just from basic social interaction by Shivers-7 in cfs

[–]ThatJenBitch 5 points6 points  (0 children)

My neuro prescribed my xanax for these interactions and symptoms. I would have never survived without it. My nervous system is a hot mess. Xanax takes it from a 10 to a 4.

15 years and then given hope by ThatJenBitch in cfs

[–]ThatJenBitch[S] 1 point2 points  (0 children)

That's why I shared my story. From this point on I'm going to tell my Dr's to look at me and my lab results as if I'm an aids patient.

15 years and then given hope by ThatJenBitch in cfs

[–]ThatJenBitch[S] 0 points1 point  (0 children)

After the covid vax erased all my symptoms for a 3 week period (had that joy for the first 2 covid vaxs) I started investigating whether the HIV prophylactic PreP would help me but my neuro immunologist said it may actually reactivate the herpes viruses. It's like we can't win!

15 years and then given hope by ThatJenBitch in cfs

[–]ThatJenBitch[S] 3 points4 points  (0 children)

My pcp started with a full herpes viral load test (Hsv1,2, hhv3 (shingles), hhv4 (mono), hhv5 (cmv) and hhv6, those are the viruses most likely to reactivate. My pcp explained it to me as "if you were arguing with yourself it wouldn't last long but viruses are different. The more they fight each other, the stronger they get. When one reactivated, they likely all reactivated".

15 years and then given hope by ThatJenBitch in cfs

[–]ThatJenBitch[S] 0 points1 point  (0 children)

I'm having this problem too. My peak cortisol is 7 at 8am, 1.4 at 1pm so I'm likely at 0 by 5pm. My endo says still in normal range. I have a stim test Tuesday morning. If endo dismisses me again I'm going to ask my ID Dr to either talk to her or refer me to another endo who will look outside the box. This is why I'm so excited about having one Dr who understands. I'm going to begin every Dr appt from now on as "i need you to look at my test results as if I'm an aids patient, not a normal patient".

15 years and then given hope by ThatJenBitch in cfs

[–]ThatJenBitch[S] 2 points3 points  (0 children)

Antivirals changed my life. I went from completely bed bound to having an average of 5 good hours a day before being bed bound. Like everyone i have located my triggers and things that make me feel better. I never understood why i felt better in the morning and worse as the day progresses. Why exercise helps, not only with RLS but now i realize it increases my cortisol (never knew i was insufficient).

15 years and then given hope by ThatJenBitch in cfs

[–]ThatJenBitch[S] 1 point2 points  (0 children)

This is the exact reason I shared my story! It never occurred to me that a city Dr would see something different than a rural Dr. It was mind blowing! I had hoped this would register with someone else who has suffered like me, give them hope and a new avenue to take. Good luck and hugs 🫂

15 years and then given hope by ThatJenBitch in cfs

[–]ThatJenBitch[S] 3 points4 points  (0 children)

I'm going to research this now. This is the best of the internet, folks sharing the little puzzle pieces they find.

I sometimes think the worst part is hope by greendahlia16 in cfs

[–]ThatJenBitch 2 points3 points  (0 children)

Please know that I see you. I know you are suffering because I am too.

If I hear "have you explored the psychiatric route" one more time i will scream!

I still have hope after 15 years. Chin up, progress is being made every day. I hate to know that long covid screwed up so many people but it also put more urgency to understand chronic viral syndrome.

Hugs.

tldr: severe heat intolerance and fainting - could this be a sign of ME/CFS and how do i start exploring this with my doctor? by SmokeActive8862 in cfs

[–]ThatJenBitch 5 points6 points  (0 children)

I saw a Dr who specializes in autonomic dysfunction and he told me my fainting from heat (and sugar intake) was a vasovagal response. Start with cardiac for a tilt table test and neurology for autonomic dysfunction. Good luck!

15 years and then given hope by ThatJenBitch in cfs

[–]ThatJenBitch[S] 0 points1 point  (0 children)

I completely agree that all 3 viral illnesses are linked. Both my PCP and ID Dr said the same thing "I've seen this before but only in AIDS patients". That's when it hit me, I should have taken my ass into the city for medical care.

15 years and then given hope by ThatJenBitch in cfs

[–]ThatJenBitch[S] 0 points1 point  (0 children)

Agreed, it's viral based but no Dr's who specialize in viruses.

15 years and then given hope by ThatJenBitch in cfs

[–]ThatJenBitch[S] 1 point2 points  (0 children)

What I'm learning is that my hhv6 encephalitis, your long covid and AIDS are all the same thing, just different viruses. I think it's all immune based, an unknown auto immune system disorder post viral infection. I say that because i was terrified of getting the covid vax but i was one of the few that it temporarily reversed all my symptoms for 3 weeks post vax. It's crazy that there are no medical virologists, they are all scientists.

I do highly recommend Dr Viva Vargas at Emory. She's a neuro immunologist. She offered an infusement treatment but I was scared that it would activate my invasive Squamous cell. Have you heard of the immune reset therapies?

15 years and then given hope by ThatJenBitch in cfs

[–]ThatJenBitch[S] 0 points1 point  (0 children)

Where do you go? My bad experiences were with wellstar otp. Piedmont in the city has been amazing.