This is topic I gave up in forum Medical Questions at LymeNet Flash.


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Posted by Mountainsky (Member # 51857) on :
 
Nothings working.

It's not Lyme related I was told

I have horrific anxiety, fear, ocd, now delusions.

My headaches and body pain are so bad. My memory and confusion is even worse. I cognitively can't read directions on things.

My skin is on fire, but no temp.

2 negative covid tests in the last 48 hours. Wtf
 
Posted by Bartenderbonnie (Member # 49177) on :
 
Ok, relax, deep breaths, let’s discuss.

Urgent symptoms are severe anxiety, wide-spread body pain and neuro psychological.

Treatments are needed to address and lower these symptoms Asap. Many options.

Many main-stream docs can assist here.

Primary and Pysch docs can prescribe you Xanax or other anti-anxiety meds. ( not anti-psychotic for anxiety) Mediation / Breathing exercises / soothing relaxing music / epsom salt baths / no toxic relationships. . . All reduce anxiety levels.

Pain management prescribe pain meds and therapies to address your pain. Lots of OTC products you can go purchase today! NASID’s, Lidocaine patches, Tens unit, curcumin, Alka seltzer (my secret weapon for headaches and body pain), magnesium, epsom salt bath ( my favorite!) stretching exercises and light weight resistant exercises for muscles, tendons, structural.

Delusions are very scary but can be controlled or eliminated.
Mine went away after many months of antibiotics but Xanax was with me the whole time. Anti-psychotics made me worse and I was prescribed many. Only you know what works for you!

Could you post the results from IGeneX?
Did the LLMD go over the results with you?

Your other tests that you posted showed high inflammation in your body. This is proof of underlying medical conditions physical in nature, causing neurological disorders.

You are sick but not unfixable.
This is a terrifying, I understand, we all understand, we will be here for you and offer what helped for us.

Recap. . .
Get to pharmacy and decide on a pain reliever that fits your criteria.
Post your IGeneX results

Tomorrow
Call and make appointment with primary doc.
Call and make appointment with pysch doc.

As always, if you suffer emergency, head to ER or nearest Urgent Care facility. They will help you immediately.

Giving up is not an option. You have done everything right so far. You have worked so hard. You are so close to getting better. You can do this Mountainsky.
 
Posted by Mountainsky (Member # 51857) on :
 
Bonnie,

I refuse to go back on benzos. I'm on Zoloft currently and doing a slow taper. I got the liquid kind.

I told someone earlier a sidefrom no relief, I've been acutely sick 3x since August. I take Vit D3 for a built up immune system, been so for about 3 years now...riddle me that. I take Turmeric for pain and inflammation ( 3 years) no relief. My inflammation markers are only going higher and my body pain worse.

I have no copies of my igenex results. I have a phone appt with llmd tomorrow evening to discuss more in depth my results. I'll ask for them.
 
Posted by hiker53 (Member # 6046) on :
 
And please remember, everyone's path to wellness here is different.

What might not work for one person may work for another.
 
Posted by Bartenderbonnie (Member # 49177) on :
 
Mountainsky

Your response is telling. Let’s discuss. . .

Anxiety has devastating effects on health and judgement.
This you know.

You read my post, immediately REACTED and RESPONDED.
You REACTED to ONLY what negatively affects you.
Anxiety clouds perception.

I need you to re-read my post. Slowly. Absorb each word and meaning. When you feel a trigger to respond, stop, and start over. After you have re-read 5 times, it will suddenly have new meanings and takeaways. Comprehensive skills improve.

Xanax is what worked for me, it is a trigger for you, so let that go. Any other words that negatively trigger a response in you, let them go also. Concentrate only on the words that cause a positive reaction for you.

You will now see many remedies and options that CAN positively help you, instead of the ones that WON’T.

As far as Vit D, it is usually used as an adjuvant/preventative therapy instead of curative.

Turmeric has been very well researched for its beneficial properties. While you might not FEEL anything, it is protective in many bodily functions. I also didn’t FEEL anything until I found a supplement with added melatonin and gaba that I take at night.

Once again, everyone is different.
It you feel it does not help you, move on to something else.
With the emphasis on ‘move on’ (keep trying)
 
Posted by map1131 (Member # 2022) on :
 
Mountain, I've posted info for you several times on thyroid. I know Thyroid Disease folks and their cries for help by the thousands.

Even worse if a person has Thyroid Disease and has Lyme & co in the picture. Your family history screams Thyroid. The fact that you've had test after test for thyroid even prior to Lyme & co and have been told you are in the normal range SCREAMS thyroid.

Lyme & co is known to attack thyroid. Folks that never had these issues are now needing treatment. You have never shared your thyroid test results on here, that I could find.

Print this off and circle every symptom you've had over the years, prior to Lyme and going back into your teens. It doesn't matter if the symptoms have come and gone over the years...circle it.

https://stopthethyroidmadness.com/symptoms/

Don't go to an Endo. I would hope and pray that a LLMD who should be more open minded about bizarre would order the correct tests. It doesn't matter if you fall in the lab so called normal ranges.

There is nothing normal in your health. I can provide you with the specific tests needed to get to the truth.

Pam
 
Posted by Mountainsky (Member # 51857) on :
 
I have MCAS, that's briefly what n llmd told me. But does MCAS become THIS debilitating?

I'm doing a mold urine test in a few days
 
Posted by Mountainsky (Member # 51857) on :
 
Thanks Pam I have seen that, I'll ask her about this too tomorrow
 
Posted by hiker53 (Member # 6046) on :
 
https://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=3;t=036299;p=0


This is some information on MCAS posted by Lymetoo
 
Posted by S13 (Member # 42830) on :
 
quote:
Originally posted by Mountainsky:
I have MCAS, that's briefly what n llmd told me. But does MCAS become THIS debilitating?

Oh yes it does. Your immune system has the power to literally break everything down in your body if it wants to.
Believe me, i know what a struggle it can be. Read the symptom list from Yasmina (healinghistamine.com) and you will see. Very scary, and she didnt even had lyme on top of her MCAS. Just showing how out of control the immune system can get.

But yeah, Lyme is an ongoing trigger for mast cells that you cannot just "avoid" like other mast cell triggers. Lyme is always present. And lyme is always active. And on top of that you have to take medication to deal with the lyme. And from experience i can tell you that >95% of the drugs out there will make MCAS worse, much worse. Totally negating any benefit from the therapy in the first place.

You see, an immune system that is out of control is the perfect breeding ground for the Borrelia bacteria. Borrelia needs the immune system to break down structures in your body so it can get its "food". Well, its collagen and other stuff, but you get the point...

So unless you can break this "cycle" you will continue to go down down down. Im sorry thats just how things are.

- Finding something that reduces lyme in your body, which doesnt freak out your mast cells, is CRUCIAL. (took me 8 years)
- Finding ways to stabilize your Mast cells with medication/supplements/lifestyle/diet is CRUCIAL (took me >9 years, still not fully there yet)

You must understand that taking the road of medication is very dangerous when you have MCAS. Medication and MCAS just dont go together that well. But thats not to say you shouldnt take medication, its just that you have to be very careful and critical of what medication you take. And yeah it does take trial and error often sadly...
 
Posted by LSG Scott (Member # 21624) on :
 
zanax is the devils candy and a horrible suggestion for anyone out here, if you take it, someday,maybe not today, but someday you will wish you never met the horrible benzo beast
 


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