What do you do when you feel like there is no way out? It's cost us a fortune, it's alienated so many people, put stress on my family, and I just constantly don't feel well?
Do you just resign yourself to be a sickly person the rest of your life? I am 58; when this started I was 52 after being misdiagnosed for at least 5-8 years?
I don't think the herbs work for me. I did 3 years of abx. Everyday it's something. I detox, I am gluten, dairy and soy free. I exercise when I can. I try to be positive. People don't know the half of it.
I am so tired of all this. I could list 20 symptoms I have, almost everyday.
It's tearing apart my soul and sometimes I would rather just cash it all in.
Posted by tickled1 (Member # 14257) on :
Have you ever tried flagyl? Have you ever had your thyroid tested? Have you tried low dose naltrexone? Do you have detox issues like MTHFR? Just throwing some stuff out there that I think has made a difference for me.
Posted by daphnesmom1 (Member # 39433) on :
I tried flagyl, made me so sick; had my thyroid tested...came back fine...(unless there is some other test I don't know about); tried LDN, gave me vision problems, I do have MTHFR and do all kinds of detox things, like epsom salt baths, glutathione pills, Alka Selzter Gold etc etc.
I see Dr H. I think if he can't help me, no one can.
Posted by tickled1 (Member # 14257) on :
My thyroid came back fine when primary care tested and then an alternative practitioner did additional testing that determined I was hypothyroid. I would think that Dr. H. would have done that though and probably did.
What dose of LDN did you start on? I'm on only 1.5 right now. A few years ago I started at 4 and it was way to high for me but the lower dose is working out. I've been on 1.5 for many months and am just now about to go up to 3.
For the MTHFR do you take the methylated/active form of B12 and folate? That is very important. Have you tried glutathione infusions?
How long have you been with Dr. H? It very well may be time for a new set of eyes.
Posted by tickled1 (Member # 14257) on :
Can you get in with Dr. K.S.? I believe he is near you. I don't know if he is taking new patients though.
Posted by daphnesmom1 (Member # 39433) on :
I called and he is not taking new patients.
I just don't know what I am doing wrong. I do everything they tell me to do.
Maybe I need to go back on IV. Who knows, but I don't know if my body could withstand it, at this stage of the game.
Posted by glm1111 (Member # 16556) on :
Antiparasitic herbs and salt/c were a life saver for me when I was where you were at. Check out the PARASITE WARRIORS THREAD.
Many with chronic Lyme are discovering this to be the missing link. Some of these ticks are carrying Filarial Worms. www.lymephotos.com
This is what came out of me after being sick and misdiagnosed for over thirty yrs. Google parasite symptoms. There is hope....don't give up.
Gael
Posted by Pocono Lyme (Member # 5939) on :
My thyroid tests also came back perfectly "normal". I went to a BHRT doc and was diagnosed with hypothyroidism and adrenal insufficiency.
Being treated for this has helped. So many of our thyroids are affected by lyme.
The reference ranges for so many things have been changed over the years.
This doc told me how they determine reference ranges now is that each lab averages out the results they get from blood draw results.
Hmm. Most of these people are sick? On meds? Half dead like me?
Posted by RC1 (Member # 31923) on :
What about mold? Have you had the HLA DR test to see if you have problems detoxing it? Anytime I have an exposure it gives me symptoms.
My house had a bunch, didn't smell, looked clean...the stuff is sneaky.
Posted by daphnesmom1 (Member # 39433) on :
They just started me on Byron White AP, but I am so sensitive to everything, I am only doing like 1 drop 3 times a week, along with ABart and Abab. I am rotating them. Doing Cowden Cumanda and Sawmento with Burber and Parsley.
I am also treating yeast: Diflucan and uping probiotics.
Poconomo Lyme, what did they treat your adenals and thyroid with? I would think that Dr. H would be up on the changes in thyroid testing, but maybe I should find a dr who specializes. What is a BHRT doc?
I have been tested for HLA, multiple times. Nothing there.
Mold: where we live now is near the ocean, so I know there is mold everywhere. We moving back to NY so I can start to get Glute infusions again, in the hopes that will help. I am sure mold here is a player.
I do b12 shots and take fish oil, coq10, glute pills, magnesium, multivitamin, they just gave me transfer factor. I feel like everything makes me flare.
I just want to be better and have a life again. I feel like I am 70 years old.
Thanks for your support. How do people do this without some kind of understanding and support out there?
Posted by lax mom (Member # 38743) on :
daphnesmom: You have to mention the thyroid issues to Dr H. He goes through so many things during your appt, it's easy to miss things.
I always write a list of meds, best/worst symptoms, and a list of questions for the appt and email it ahead of time.
I know what you mean. I am 39 and feel like I'm 100. I have taken every supp that was recommended and am not yet well. You have to keep on fighting.
The Liposomal Glutathione softgels did nothing for me, even when I took 6 at once. Can you try IV Glut?
You may have been tested for HLA DR4 but not the Dr S mold panel. That's completely different.
Dr H is good about treating hormonal issues. You have to bring up the topic if he forgets. Have you done the saliva cortisol test, the heavy metals challenge?
Posted by daphnesmom1 (Member # 39433) on :
I am doing HRT. All my hormones are where they should be. I have been tested a few time, both saliva and blood.
I guess I can ask about the Dr. S mold panel. I do think it's a big issue here so close to the beach. It's unavoidable, under buildings on roofs, in the air.
I make a list too. I actually keep a Word document open on my laptop, and starting adding things as I think of them or become concerned, and then I fine tune it for the appt. I make sure I cover everything before I leave, even if I feel the appt is moving fast.
When we get back to NY, my plan is to get back to glute infusions. I think the pills are not going much at all.
I read about the glute suppositories once. Has anyone used those?
Posted by lax mom (Member # 38743) on :
I used the Glut suppositories. They worked better for me than the soft gel, but not as well as IV. Maybe you could use them in the meantime?
Posted by MannaMe (Member # 33330) on :
Have you done any rifing?
My husband uses rife - supporting detoxing, lymph, adrenals.
He uses it for upset stomach and for headaches.
He does rife for Babesia and on rare occasions he will rife for Lyme. Babesia is his main issue.
With rife you aren't adding anything more into your system that you need to deal with.
Posted by Pocono Lyme (Member # 5939) on :
I used to see Dr. H.. That was a while back though. Maybe he is aware of the thyroid issues now. Do you have a lot of hypothyroid symptoms?
BHRT is bioidentical hormone replacement therapy.
The doc I see treats thyroid based on symptoms. I found him by calling pharmacies. Best ones are compounding pharmacies.
I was put on Armour Thyroid. I didn't do the saliva stress test prior as I had been using Hydrocortisone cream and the results would be skewed.
When I crashed on only 1 15mg pill, that was proof of adrenal insufficiency. That's when he put me on hydrocortisone tablets for the adrenals.
After that I went to full dose, equivalent to 8 of those 15mg pills with no problem.
laxmom. We're both 100!! If this is how 100 feels, I don't want to live that long. It hurts to see people so much older doing things I can't.
Driving, shopping, socializing,....
Posted by lax mom (Member # 38743) on :
Pocono Lyme: YES!!! I'm 39 and jealous of my 73 yr old mom!
She can drive, work FT and help me take care of my son when my husband works nights, and on and on.
Seriously, how much sleep does one body need??? I am so sick of needing to sleep all of the time!
daphnesmom: sorry about going off topic. Just needed to vent Posted by daphnesmom1 (Member # 39433) on :
Vent away! Sometimes I think we are so hyper focused on fine tooth combing this disease and treatment we don't let our selves vent.
I HATE being sick this long. I HATE waking up to it everyday and having it plan what the day will hold. I HATE having to cancel so many plans, if I even go so far as to make them. I feel like my family is drifting away. So many friends have drifted. I honestly think I am way too shallow to deal with this. I know people are worse off...there are bombings and murders, and people with missing chiildren. I know people have cancer and are dying everyday. But sometimes I ask myself, which is worse. THIS or that.
My husband is jumping through hoops at work to keep us afloat. I can see the stress on his face.
I lost my yellow lab "daphne" this winter. She was 15 and a half. She was my special girl who stuck by me when I got sick. I always thought we would reach the finish line together, she and I....when I got better. Now I realize there really is no finish line and probably never will be for me. She's gone now and I'm still sick.
Anyone else feel free to vent.
Posted by daphnesmom1 (Member # 39433) on :
sleeping dog, I pm'd you and it says your mailbox is full. Posted by unsure445 (Member # 15962) on :
I can relate to having a rough week!
Funny�my mom is 72, she plays tennis, golf, walks with friends, and goes to cocktail parties.
Sometimes all in one day! I love it and she deserves it. I get tired just thinking about it all!
I hope the weekend is an improvement. For both of us!
Posted by daphnesmom1 (Member # 39433) on :
Yes, I agree! Yesterday was really horrible. This morning was bad, but then this afternoon was pretty good. Went to the beach with a very patient and understanding neighbor. Felt good to get outside in the fresh air.
The rollercoaster ride that is Lyme. I hope things get better. I really, really do.
Posted by kaybabalima (Member # 40029) on :
I started out slow on the Byron White formulas too. Worked my way up. So one of the things they explain is that illness has layers like an onion and you need to unravel it. So it's like this: you start with mold or candida maybe from living in a moldy house or eating too much sugar and then you get parasites because your immune is lowered and then you get a tick bite and your immune is very low now and you can't fight off the stuff the tick is carrying etc etc. That's why Byron makes formulas for fungus, candida, parasites, so that it can be systematically addressed. I started on one or two for Babesia and Lyme and then moved to candida and parasite formulas. The whole time taking detox so as not to suffer from herxing. To learn more so you can figure it all out with your doctor's help you should listen to their free educational recording on their blog. It helped me understand what I'm doing a lot.
Posted by Bitten in Bergen (Member # 34067) on :
I'm with you, daphnesmom1. It's so frustrating to wake up every day and feel miserable.
I'm in treatment no man's land right now - waiting to increase/add some meds while waiting for a consult with an even better LLMD.
Now that we got my yeast under control (back on diflucan) I'm having babesia flare up, so need to get back on treatment for that.
Before this, had bartonella flare.
Sometimes it's just a matter of following the symptoms and trying different things.
But I'm biding my time until I get to see the new LLMD since she treats all issues - not just lyme.
My current LLMD is supposed to be one of the best, but they continue to have tunnel vision and are not as aggressive about bart and babesia as they should be, so I have to prod them.
And it's so hard to constantly remind them. But they are agreeable, so that is good.
Just tired of having to advocate for myself, as well as my entire family, who also have lyme & company.
But kababalima is right - you have to peel away the layers of what is making you sick - and sometimes it's a trial and error - even for my llmd.
Hang in there and don't give up. Many of us are in the same @#$% boat.
<<hugs>>
Posted by CherylSue (Member # 13077) on :
Yep, been there. A familiar story. Relapse after relapse.
However, I kept changing LLMD's until I found my 3rd one who treats aggressively. The bad news is that he's under review and may lose his license.
The good news is that I'm so much better. I thought I was a goner for awhile. I still suffer from fatigue, take naps, but I live a pretty normal life. I have my ups and downs, but I am a lot happier than I was.
I waited 7 1/2 years to get diagnosed. Prior to that it was called CFS.
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