I have a new diagnosis that explains why Lyme treatment is failing me

Thank you for letting us know IHL. I feel relieved that you're getting some answers. I have been keeping you in my thoughts and prayers and will continue to do so. I really want you to get better!

Keep it up with taking it easy and enjoying some good movies! You need a well deserved break!

Oh I am so glad that you got some answers! It's great that not too Many cells are affected--maybe with treatment for Lyme and co. You will get well. I think you and your doc can do herbals and maybe that will save you from everything. It is good you cought it. Now you know what is wrong, you know you are not a nut case, you know is not anxiety...

May God heal you and I hope His herbs will fix everything the way the abx were incapable to work for you. Herbs worked beautifully for thousands of years and there is no reason they can't work for you. I don't know much about MCAS. I just hope that it won't prevent you from taking herbs. Oh my goodness, that hospital and all the drs that ridiculed you should be ashamed of themselves! They have no manners! They think this is all in our head and we are the crazy ones, when in fact is the other way around--what is craizier than believing a person with a bacterial infection is crazy!

Rest and you have chances to reverse this! Everything is possible! The body is amazing and has amazing capabilities of healing itself. It doesn't matter if you have that syndrome or that syndrome.

Hugs to you and your family. May you all stay strong and stress free.

Post Edited (Simela1) : 5/1/2015 9:48:44 PM (GMT-6)

And let's not forget to thank Trav who helped IHL figure this out!

Trav, I always loved you but now I love you even more!

Wow, thank goodness you figured it out.
Stay strong!

IHL, as I mentioned in your post "I am getting worried about my head", you are probably going to need to go on cortisteroids to calm your immune system. Your immune system must have caused a whole lot of inflammation in your body, so yes, you saved your life when you took the antihistamine.

I know that cortisteroids are contraindicated for people with Lyme but not all steroids are the same. Some will not inhibit your immune system if taken in the right dosage.

I am so glad that your doctor have you the EPI pen because we Lymies are prone to so many new allergies that we may not know all of them and some can be very severe.

Since getting infected I have become allergic to gluten, avocados, seafood, chlorine, Aloe Vera, strawberries, and who know what else that I haven't discovered yet.

I hope you continue to heal and please don't give up. You just have to find the right doctor that can figure this out for you. You may want to look into some of the herbs that help control a cytokine cascade which should be able to help you control the immune system.

I just read about about a girl with a severe case of this. She was allergic to everything and had seizures and painful dystonia. She improved with IVIG.

You guys are all equally amazing. Thank you for being here for Me through all this.

Like I said I'm not sure if I got that information correct about this. Trav knows better than me lol. I can't shake this headache enough to read very much.

I was prescribed a steroid called dexamethanose or something. But I was told not to take anything except theast cell stabilizer quercitin. I was also prescribed gastrocom and singulair. I have special instructions on when and how to take them I can't remember right now.

My guy is going to the pharmacy to pick up my medicine right now. Hopefully after a percocet I can function enough to learn some more. This headache is killing me. I don't want to live like this anymore. It's not fair to my family. I'm rotting in my bed or on the couch. My guy has been amazing and has taken more time off work to be my nurse and be mom and dad to our son. Along with chef, maid, book keeper....etc.

I feel so guilty. I know how hard it is to be in his position. I took care of my mom and it's important that the caregiver gets time to unwind. Every time I fall asleep he's shaking me awake to make sure I'm breathing and not passed out. I can't imagine how scared and tired he is. Me having to stay away from everything with histamine is a job in itself. I don't know how he's pulling through. I wish I could get some help for him. I'm in such a terrible mood all the time and he is always so sweet despite it. I'm really lucky. I can't wait to be well so I can nice things for him again. And play with my son. I really miss life with them.

Being this sick really puts things in perspective. All I want out of life is to laugh and play with my boys. I want to make my family dinner and talk to them and be able to look at their eyes when they talk to me instead of squeezing them shut to avoid pain from moving my eyes. I miss taking my son on walks to moo at the cows. And I miss helping him feed all the animals. and watering our beautiful gardens with him. I can't wait to get back at it.

For now though I'm stuck in this torture chamber. I haven't showered in over a week. I barely brush my teeth. I'm going to get dread locks lol. Before I was sick, but I could still do stuff. Right now I'm severely impaired. I imagine this is what my mom felt like the last leg of her life. It's just miserable. It's hard to keep a positive attitude. And really, whether or not I'm positive does not change the situation. Sometimes smiling takes too much effort. But so does pouting about it.

I'm lucky I have 2 really amazing doctors helping me climb out of this hole I've fell in. I'm hoping by the end of the week I'll be able to walk around more and fix my own food and help out with my son a little more. My guy really must need a break by now.

Thanks for being here to vent to. I love coming here and seeing so much encouragement. You guys are the best

I'm glad you caught this. I was just reading about it the other day actually!

And Simela, I don't appreciate you saying that about anxiety, making you a nutcase. People can have anxiety with no true cause and can't help it. That does not make them nutcases. There's nothing wrong with a GAD.

Thak God that you were given an answer and a solution.
Rest and no worries!
Try to relax, listen to your favorite music, this helps to relax and to forget about problems.
You may even need to take a break from the forum, but please keep us posted about your health....
Traveler, thank you for always being there... And I also thank all the moderators and members that take from their busy time to help us all here.

We just live and learn IHL. Don't beat yourself up over decisions you made since that will just add stress and there's nothing you can do about the past. You've shown you're a strong person so just keep looking into the future.

You have a wonderful fiance to look after you so well and the day will come when you can do things for him. He obviously wants to stick with you and see you get well again. Just thank him and remind him how much you appreciate him. That can go a long way for the caretaker. I imagine you do that already. My poor hubby is going through the 2nd round of ill health with me and does too much for me. So I understand your thoughts.

I hope your doctors will figure things out to help you move ahead more. Hopefully that headache will lessen soon so you can concentrate better too.

I'm so glad you joined this forum and that you can speak your thoughts on here and get positive feedback and good support. Hang in there and keep fighting!

Hugs and prayers

BDL:

You misunderstood what I said. IHL and Trav understood me because they know what I was referring to.

FYI, I personally think anxiety is the symptom of something else. I do not think it is a medical condition. I think it is caused by a chemical imbalance due to hormonal change, infections, trauma, etc. And no, I do not think people with anxiety are nuts. I think the medical establishment treats them that way. Certainly not me! I think drs should find out the cause of the anxiety and treat it, rather than giving people anxiety meds. My son was labeled with anxiety too. He is 10.

What anxiety should a 10 yr old have? I did not buy it, they sent him to the mental health PHDs to deal with him. We went once, they annoyed the heck out of me and they annoyed my son because they treated him like he was a 2 yr old.

I stopped going and I started to look into infections as the cause of his anxiety and seizures. It turns out I was correct: his anxiety was caused by chemical imbalances in his brain such as neurotoxins and the bacterial infections, and so were the seizures, although the drs said the seizures were due to... "an unknown cause". It wasn't an unknown cause... it was Lyme and Bartonella, but the docs were not looking for them nor for another cause. The reason the cause was unknown, is because they weren't even trying to find them! They didn't do any tests! He is no longer dealing with seizures or anxiety. Problem fixed! That is because, I did not listen to the mainstream drs and I treated the cause, rather than the symptom!

If I would think people with anxiety are nuts, I would have to include my son in that pool too. Doctors should look passed the anxiety pill to help the patients fix what is broken, rather than treat their symptoms. So that is what I really think, if you care to know.

Post Edited (Simela1) : 5/3/2015 1:35:37 PM (GMT-6)

IHL- I am glad to hear that you are getting to the bottom of all of this. You are in my thoughts. I look forward to coming here and reading that you are finally feeling even a little better. Please keep us posted. Some day when you are better and looking back you will see what an incredibly strong person you are. Also, you have a gift of truly knowing how much your guy loves you.

Good luck! you deserve it.