Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
I'm going crazy with depression and worry .
I don't want this thing. And from all the reading I've done it appears it is with me for life and I have NO idea how or if and decidedly not when I'll get better.
I lost a romantic relationship over this, which...well, it's really better; that whole relationship was for Healthy Me and not Sick Me, who is a different person managing several different pain syndromes and deficiencies all day every day.
I'm grateful for some things so far, like for my family, and that I can still walk, and that at the moment I can afford treatment. I can drive too, a little. Also...I suppose one day I'll be grateful I found out what was wrong.
But the depression, overwhelm and isolation is crushing.
Not to mention, I just talked to my son who told me the other day he was so tired he just fell into bed and slept for ten hours.
My stomach knotted up.
How long have I had this? 25 years? Does my son have it?
I'm pretty sure I got it three years ago from a VERY suspicious bite that I was sure was a spider bite, especially since everyone I knew where I was living looked at it and told me there was no Lyme at all in that area and there had not been a single case of it verified there.
If I somehow passed it to my son from some ancient infection...I wouldn't be able to stand it.
There is something about this entire catastrophe-- the weirdness, the fear, the loss of trust in both your own body and capabilities and the loss of faith that anything or anyone can help...it's brutal.
Worryworryworryworryworryworry...
There has to be some relief for this. I'm not going to a psychologist or something like that; I am too far from any support group to make it and I am on my own with all this medical stuff. That's plenty: I have to get a colonoscopy next week and I'm barely functional enough to follow the prep directions.
Is there a website you go to? Is there something you read that cheers you up? Do certain supplements get you through?
I gotta toughen up here or I'm never going to make it.
Posts: 2057 | From Florida | Registered: Feb 2015
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Gentle reminder that Lyme treatment and understanding of such has made good progress in the last decade.
You have a LLMD appointment scheduled in the near future and this is a VERY good thing.
You are willing to do the homework and have the capability of understanding intricacies.
Here is my suggestion...just my humble opinion...it is time to take it down a notch and TRUST your choices that you are making.
Right now you are in the beginning of a journey and you are overwhelming yourself with research and scaring yourself with what ifs.
I gotta tell you...fear makes everything worse...it just does...allow yourself 5 minutes of worry...set your timer, when it goes off you must stop.
You have a plan and a good one...IT WILL ALL WORK OUT.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
The thing I don't know is whether I'll be able to do the work that goes into this. I have the cowden protocol here, with a booklet and a checklist -- it's not the complexity that gets me, it's the persistence I'm not sure I have.
I've stopped more things than I've started, because I'll read some additional ancillary thing and think...ok...is it good to do this or not?
Example Vitamin C. I was taking 1 gram a day for my immune system but then read something by Tom Grier that said it might actually help the bacteria grow and make people demented.
Vitamin C? Is bad?
Everything is starting to look dangerous. Tomatoes. The grocery store. Shampoo. Even the antibiotics I'm taking make me worry I'm going to wake up with Stevens Johnson Syndrome.
Thanks for your answer...fear does make everything worse. A lot worse.
.........................................
(breaking up one paragraph for easier reading for many here)
momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
Because you are desperately trying to figure it all out by yourself.
Give your mind and emotional well-being a tiny break...just stop trying to have the answer...
Your doctor will know...that is why you are going to him...he will know what to do so you don't have to figure it all out on your own.
I know where you are coming from...I would have sold my very soul to have the answer for my extremely sick daughter...I would have done anything asked of me...I would stay up around the clock researching...I got little sleep FOR YEARS...don't do it that way...it is detrimental.
Wait on your doctor...he can do appropriate testing, you cannot. He will have knowledge you don't.
A thing I learned from my daughter...she would tell me that she could tell at times if something wasn't right for her by paying attention to her body...be in tune, but not with fear.
Same with me about everything being a potential bullet to the brain...you look at everything being poison...I understand totally.
Let food be your medicine for now...eat as organic, gmo free, sugar free and gluten free as you can...there is much to be said about good nutrition...and THAT is something you can do that is very beneficial to your health...it will be a good preparation for treatment and it is something you can stick to without worry that you are doing the right thing or not.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
It's scary to realize I have no immune system. My whole life my immune system has kept me running like a top through a million environments -- now...you couldn't pay me to eat in a restaurant, touch a salad bar, eat anything out of a can, sit next to anyone I don't know or haven't seen in a while, use a public restroom...etc...
That little cold people are carrying around could be guillain barre to me. I feel like a woman in a bubble googling up disasters.
Posts: 2057 | From Florida | Registered: Feb 2015
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momindeep
Frequent Contributor (1K+ posts)
Member # 7618
posted
I get it...I really do...it happens to the best of us...I made my daughter wear a mask out in public.
Listen, you can do only so much and the rest you have to let go...and sometimes the internet is not your friend...it can be a total freak-out.
There are a lot of bright, intelligent, people here on lymenet...maybe just stay within these parameters for now and let the rest of the world wide web go.
This forum, and the folks here played a key role in helping me help my daughter get well.
You can read only so many papers and abstracts.
Posts: 1512 | From Glenwood City WI | Registered: Jul 2005
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WPinVA
Frequent Contributor (1K+ posts)
Member # 33581
posted
Yes, it is hard to figure it all out. You have an LLMD appt now so you will have guidance. There are times when too much research is not your friend.
Try to cut out as many chemicals and processed foods as you can and eat a healthy diet with whole foods and lots of veggies and good protein.
After that - what is good and what is not is going to be different for different people. A good LLMD can guide you, but even with that, there is still trial and error. That is why when you try a new supplement, you start slow and you only try one new thing at a time.
Posts: 1737 | From Virginia | Registered: Aug 2011
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posted
You know what? We can't figure out what's going to happen in advance. Life is a process of unfolding discovery. We are all unique and need to find out what we respond to.
May I say, I can't tell you in advance about how anything's going to work for me re treatment. I literally have to try it, and when I do, I try a small amount to see how I'm going to do.
So I think it's spinning your brain unnecessarily to wonder. The proof is going to be in the pudding, so to speak, when you start testing things.
For now, I think it's a good idea to get yourself educated as much as you can.
Treatment for Lyme falls in three categories - kill/deter the organisms, detox, and fortify the body. All three areas can be studied.
I understand you are also to be seeing a doctor soon. They will probably order bloodtesting to look at your unique chemistry and that will also help them make decisions about what to boost.
I can't remember - do you have any co-infections? If so, they will need treatment too.
As far as your son is concerned, who knows whether he got anything from you or whether he got exposed during his own time? The important thing is to start looking at his patterns and see you and he think he fits any of this.
I don't know how old he is and whether he would be at all interested in exploring his situation here or not?
One more - the infections can make us worry - it's part of the neurotransmitters and oxygen situation, so just know it could be physiological, and try to relax a little - you will be treating soon.
Posts: 13116 | From San Francisco | Registered: May 2006
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Everyone above gave great advice to you. Take it. Absorb it. Try not to let everything you read convince you something is bad (vit C). Vitamin c is good for lyme patients.
I panicked when I found out I had lyme. I researched every single day looking for answers. I think a lot of people have. Fear drove me. Not good. Focus on all the good things you can do for your body (much like cancer patients do). Eat right, laugh and rest. Keep a journal (patterns).
I love everything Momindeep said above. Wait then listen to your lyme doc. Put all of it on his shoulders. Our lyme docs see more than we do just from the volume of patients they have. Take that burden off of your shoulders and give it to him. It will give you some peace.
Also, try not to become a shut in with worrying about viruses, etc. I feel so much better when I get out and am around other people even if it's just shopping. Hang in there!
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Thanks everyone.
I know it's the disease talking. Also I think mino makes me batty.
My son is in his 20's and he's probably fine. If he had Lyme from birth it's pretty likely it would have shown up by now. He was healthy as a horse his whole life except for one bout of strep at age 2.
I just think I see Lyme everywhere now.
Finding out and realizing you have to get treated for Lyme is like seeing a looming tunnel ahead you don't want to go into. There is really no way out but through.
Posts: 2057 | From Florida | Registered: Feb 2015
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
I get you and im in the same anxious boat...a qui gong instructor said its only when the possibility of life ending do we contemplate death and it that which we fear.
I have begun bvt and some rife herbs and supplements. I have seen the llnp in my area ,saving the orals as i cannot justify taking them..i cannnot justify not taking them...
i worry i have congentally spread it to my 3 yr ...
i was achey and had a "little verigo then i took a short course and whammo my body flipped. I made will ..thought i was als One nurse thinks j did have mild sjs...some say herx...
but i have weird muscle wasting in hands and feet and notice flesh missing from head and sternum....
igenix and microscopy confirmed.art tested for rmsf ,blo myco and cnp and of course cmv hh6, ebv and then there is possible coccidioidomycosis in bloodwork!?
That treatment is amphoterrible would make abx a walk in park .
so do i eat the diflucan doxy and tini and the iver or the blue pill...one side doc got a port approved to sell me iv therapies i could try rociphin. ..
but i spin roominate and debate weigh and wake up 90yrs old with no clue ...how do i get it off my heart my head ...how do i get it out of my bl00d cells?
I scard of being scard im tired of being tired and havent even heard the starting gun and my hands felt like two balloons a long time ago. I wish i was here.
........................................
(breaking up the post for easier reading for many here)
For me, the turn-around was when I tested low thyroid, went on Armour, and then I felt here again. Because my metabolism was working better again and I was able to take things in better. I really do think it's physiological about feeling "here."
So have you had your thyroid checked?
The answer is going to involve trying remedies to see if they work. We're all different and can't know until we try something.
Posts: 13116 | From San Francisco | Registered: May 2006
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posted
The process you are going through is what almost everyone here goes through. You are in an out of control situation and you are attempting to gain control and mastery over it.
You may never get a definitive diagnosis. Lyme testing is faulty at best. The LLMD will make a clinical diagnosis which may or may not be enough for you.
I never had a positive test result. I questioned the doctor's diagnosis over and over. It was part of the process for me. I had overwhelming anxiety and fear.
What I learned was "stay" in the present moment. I began training my mind to not look in the future...to just stay in the moment.
Over time, you will develop skills and the emotional stamina to "cope".
Posts: 538 | From kentucky | Registered: Nov 2011
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posted
Diet helped me reduce anxiety. When I would take a break and have a junk food coma I would get more anxious, stressed mentally like a feeling of dread and doom that would lessen a few days after eating healthy again. Sugar seems to be the worst trigger for Lyme symptoms.
I like the post from WPinVA about trial and error and changing one thing at a time. If you have a fixed diet and add one food or supplement at a time it's easier to tell what effect it is having on your body and what works or makes you feel worse. FellowFloridian
[ 01-26-2016, 12:15 AM: Message edited by: Winter Park ]
Posts: 30 | From Winter Park Florida | Registered: Aug 2013
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
. Thanks all for your kind words.
I saw the Lyme Doc today and we were able to have a long conversation about what's been happening to me and what I've tried, all symptoms etc.
He said it was pretty clear from what I was saying that I had neuroborreliosis. Last thing I wanted to hear but when there is no other answer, you need to hear the answer.
I also got my pathology report back from gastroscopy world and tested negative for H Pylori.
Which means that 41 KdA IgM is NOT H pylori.
Since I haven't been treated for Lyme by an LLMD, we're going to start with treating for Lyme, *very* gently. LOW dose of mino every day pulsing with tinidazole twice a week.
I have thyroid nodules but the tests always come out normal.
Of course!
Posts: 2057 | From Florida | Registered: Feb 2015
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