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I'm terrified of treatment :(

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Posted 6/26/2015 5:09 PM (GMT 0)
I know that I have to treat my infections if I'm ever going to a normal life again. I know that. I'm having an extremely hard time not being scared. I have PTSD from this I swear. All the surgeries, all the poking and prodding, all the doctor appointments and medications. I hardly feel human anymore.

I'm changing. This is changing me and I'm not comfortable with it. I've been trying this whole time to act like nothing is out of the ordinary. I've been putting on a show in front of my family so they don't realize how bad it is. I've been hiding from the reality of this whole thing.

I'm SO sick now. I can't even imagine getting any worse. I don't know that I trust my doctor to really take care of me. I feel like I've almost been killed a couple times because no one took me seriously. It just doesn't feel safe. I keep thinking maybe I'm just paranoid, maybe these feelings are just another symptom. It's a scary realization that you can't tell the difference anymore.

I can't figure out what happened to me since I started treatment in September. Maybe you guys can help me with that. I'm SO much worse now. Does this happen frequently? Do others just gradually regress? Is this how the infections work? I just don't know that jumping back into treatment using IV's is the answer. I'm scared. I'm afraid my mast cells are going to explode and kill me. In April I literally felt inclined to say goodbye to my family because I thought I was really close to crossing the line between life and death. Maybe that was an over reaction? I don't know that I'll ever definitively know for sure.

Sometimes I feel like I would've been better off without treatment altogether. I've been detoxing religiously. I've been doing everything right. I'm worse off and it's not for lack of effort! I don't want to live in fear anymore. I just can't comprehend what happened to me the last 6 months or so. I don't know what flipped in my body..
Posted 6/26/2015 5:39 PM (GMT 0)
IHL - Do you have a specialist treating your MCA? And, what does he say about starting up the lyme treatment?
Or, is your LLMD knowledgeable in MCA?

That's my concern.
Posted 6/26/2015 5:51 PM (GMT 0)
My LLND says that he treats alot of his patients for MCAD. He said it's not that uncommon for lyme patients to have this problem. Based on the medications he gave me he seems to be pretty knowledgeable. My primary care doctor who is also a naturopathic doctor has been helping out too.

From what I read on the new LymeMD blog post I understand that some people just don't respond to treatment for MCAD very well. My worry is that if I can't get it under control enough to handle the lyme medications where does that leave me?


---------------"I see MCAD as a secondary phenomenon which appears as a consequence of Lyme. My patients did not seek out care for this disorder before becoming sick with Lyme/tickborne illness. Only a subset of Lyme patients respond to MCAD therapy (I am not sure how big the subset is). The therapy, which may not work, is cumbersome and hard to explain to patients. When the treatment works results can be very rewarding. The likelihood of response is tied to proper patient selection. Likely candidates have a history of allergies of some sort and may have rhinitis or sinusitis. (Not required). Patients may report a history of itching and/or rashes which come and go for no apparent reason. A recent patient told me a rash which had been present for years dramatically vacated with MCAD therapy. Good patient candidates may be sensitive to many things including chemicals and scents and other environmental triggers."----------------- Copied from the LymeMd page



I was sick before I got that bullseye rash. Maybe I had lyme already or MCAD? I don't know how to tell. I'm really really confused.
Posted 6/26/2015 5:56 PM (GMT 0)
So, are you scheduled to start IV antibiotics soon?
Posted 6/26/2015 6:09 PM (GMT 0)
I'm so sorry IHL. It does seem you should be seeing some improvements, but that's just my thought. It has been such a hard time for you. I remember just before spring how you were enjoying working in your greenhouse and just enjoying the early spring. Maybe you can get back to that stage and have it last longer this time around. I hope you have a doctor to help with your MCA. I don't know much about it, but it could be a key to moving you ahead more.

Be careful if you're out in the heat tomorrow. Hopefully it won't get to 100 like they're predicting.

Hugs
Posted 6/26/2015 6:21 PM (GMT 0)
My doctor said that treatment needs to basically start over. My digestive system is screwed. So he wants to try very low doses of antibiotics either IM or IV just to bypass my guts.

I've been on both herbal and abx. I've been on a ton of supplements a day. Since April all I've done is detox detox detox and take my MCAD medications. I'm pretty sure 3 days ago I started my cefdinir again.

A couple weeks before that I took 2 pills of Diflucan and about killed myself. I was taking Diflucan a couple times a week for quite a while and honestly it always made me feel better. Now all the sudden it's on my allergy list because of how sick I got.

My problem right now is that stuff I used to be just fine with flips on me. I'm OK on it one day and the next I'm not. I cannot comprehend how my body has the capability of behaving this way.

My brain function is SO bad. I'm not recognizing people that are practically family, I can't remember what happened 2 hours ago....etc. Everytime i take a medication I'm scared that I'm going to have a reaction. It doesn't seem to matter if I was OK with it before. It's random!

I don't know what flipped in my body and turned the MCAD on. I'm not even sure if that's really what is happening.

Sayyadina------- That is the million dollar question!!!!! I have absolutely no clue! At this point it's all just a dang guessing game. None of this makes any sense to me. My brain being broken is not helping. I'll think I have a good hold on it and an hour later I can't even remember what I'm supposed to be doing..


My doctor seems confused. I don't know maybe he's not. I keep complaining to him that I don't feel good and the response I get is pretty much "No kidding, you have a high bacterial load and crazy mast cells and we just haven't found the right coctail yet". He says he won't give up on me until I'm better. Sometimes I question his ability to handle this. I don't know why. I guess it's because back in April I kept telling him that something was very wrong and he didn't take me very seriously. I guess it's just a difference of opinion. He deals with insanely sick people everyday so none of this is shocking to him.

Maybe he just sees my fear as a symptom. I don't know.. Maybe my fear is a symptom, at times I'm sure it is.

I'm just really confused. I don't understand what's happening to me or where I stand or what I need to do to turn this around. I need to get the scale to tip back in my favor, but how?

Maybe I'm just over thinking all of this. I feel really wound up and anxious.
Posted 6/26/2015 6:56 PM (GMT 0)
With the amount that we share - I can assure you that your fear is not just another symptom. You have real reason to be afraid of treatments - but that doesn't mean that you can get by without them.

You know the rest of my thoughts - LOL!
Posted 6/26/2015 7:19 PM (GMT 0)
Being anxious makes sense-not just in the LD symptom way! When u feel like crap, u either roll over & accept it, or you challenge & search for answers to cure. You have shown that you are a fighter & in the game of survival that is a good thing.

Maybe back off on all the supplements & try instead adding juice that includes the nutrition you are trying to find in these pills? I've been getting frozen spinach/kale, tart cherries, pineapple, a TB of coconut oil, juice of lemon in my Ninja pulverizer. My body is often sensitive to this so I have to be mindful to maybe not do every day. I know u need weight so adding a banana or such might be good?

You have had in the past a few good days which signals something was working. And yes, these docs all seem to say ya just have to find the right combo--very frustrating when we are the human sacrifices!

So 2 questions: Do u have faith in this doc? And do you have someone, your boyfriend or family member who can help you keep track of this & be your advocate, attending you at doc appts? Xjo

Post Edited (happyjo) : 6/26/2015 2:31:12 PM (GMT-6)

Posted 6/26/2015 8:12 PM (GMT 0)
My fiance usually takes me but my 3 year old is super boisterous and can't always sit through the whole appointment. So it's usually just me talking to him. The last few times I was in I had such a terrible headache I fou do it difficult to listen to anything he said. We've been having phone appointments though and I could talk to him then.

He's mostly just trying to settle down my symptoms so I can be comfortable and able to tolerate treatment. He's always very reassuring.

Last time we talked he said I've been in an "urgent care" the whole time he's known me. No kidding! He just said he wanted to try injections or ivs.

I guess I'm kind of freaking out over nothing? I get jumbled and it gives me anxiety and I freak out for a while. It's hard to think straight lately. I've just been too sick to wrap my head around any of this. Trying to keep up with kid my garden and my animals and house and my fiances work leaves me ovwrwhelmed. Then you throw in all my medications and detox and I'm spent.

I guess I need to simplify my life. I need to step back and really indulge in only what I'm capable of, and take it one hour at a time. The most important thing is to take my medications and eat and rest. The rest comes after. Except for my son, he's obviously at the top of the lost no matter what. But making him a priority sometimes mea a someone else has to be responsible for him. It's up to me to know where to draw the line. If someone else needs to hang out with him so I can eat and then lay down for two hours or so that doesn't make me a bad mom. That doesn't make me lazy. I'm not superwoman.

Simple simple simple simplicity. That needs to be my new motto. I'm trying to function like a normal person and I'm just not. Not yet. And probably not tomorrow either.

I think I'm going to bite the bullet and go ahead with the treatments. Taking it slow and steady and detoxing everyday.

Is it better to build up your body or kill bugs first? I guess I've been building up since April.

Finding yourself needing to be strong when you're at your weakest point is challenging. I'm devastated, this disease has brought me to my knees and this isn't the first time. I have to remember what I've already been through and believe that this isn't all done in vain. It's hard to cause yourself pain. When I can't do it for myself anymore I always look to my son and know in my heart that he deserves to have a healthy mom. I want to be able to bring him to the park. I want to play with him in his pool. Hell, I want to be able to be alone with him and not worry about passing out!
Posted 6/26/2015 8:33 PM (GMT 0)
IHL, You can do this. I know it is so hard to make yourself sick. Sometimes I actually gag when I am taking something that I know will make me herx. My body knows I will feel bad from it, but I still have to get it down.

I hope you find peace soon. Peace is what I am after also. What your write is really so insightful.

"Finding yourself needing to be strong when you're at your weakest point is challenging."

You go and be strong now. You deserve everything that you want and my heartfelt hope for you is that you will have all that you want some day soon.

(((HUGS))))
Posted 6/26/2015 8:36 PM (GMT 0)
Thank you everybody.

I guess sometimes I just need to write it out and talk about it with people that get it. I find coming here very encouraging. Sometimes all I need a push in the right direction.
Posted 6/26/2015 8:53 PM (GMT 0)
Yeah, u do need someone with u to attend the appts--And I know it ain't easy, but a babysitter for your son during the appts so everyone can concentrate. Phone option is great, but having ur doc see u & vice versa is good to monitor.

U said your doc was reassuring & that is bueno. But u didn't really answer the question--do you trust him & do u have faith in him?

And yes, do only what u can! I know u think & wish u should be doing it all. When I'm feeling good, my husband always has to remind me, "You're not over doing it again, are u?" And I get pissy & say no, but then he's usually right cuz I always end up overdoing it!

I wish I could offer to baby sit to help u, as I know how tough it is keeping up with a wee one--& that's when u have health! One thing at a time. Take lots of ME time, k? X
Posted 6/26/2015 9:06 PM (GMT 0)
Praying you make the right decisions for yourself. You need to be #1 right now, take care of yourself so you can take care of your son, he needs you.

I would be scared also with this mast cell thing but you will only get worse with the Lyme if you don't try and treat it.

I don't know if you believe in prayer but it is very powerful and has gotten me through so many trials.

Praying you feel better soon.
Posted 6/26/2015 9:17 PM (GMT 0)
My mother in law baby sits when she has the day off of work. But it doesn't always work out so a lot of the time we need to bring our son. It's a little over 2 hours away. My mother in law works for a doctor and she has always been in the medical field. I like when she takes me and sits in because she understands what he's saying and can help interpret it for me later. I'm pretty sure she's able to go with me to my next appt. I'm looking forward to that.

My fiance isn't the greatest. He down plays everything and talks over me and it's annoying. I have to remind him he's not in my body. He gets more mixed up than I do and tells the doctor things that aren't necessarily accurate all the time. He means well. But still lol.

The problem I have with my doctor is that he's way too busy. I have one or two hour appointments but he has to answer his phone a lot and leave the room to deal with things. It seems like he's all about quick solutions. He did say I need to be seen every 3 weeks so I think that will make a huge difference.

He goes to all the ilads conferences and is well versed in lyme. He's really really smart. He thinks out of the box and is willing to do unorthodox stuff. He listens to me and if I ever want to try anything he gives it to me. He's good about giving me options and works with me financially.

I think up until this point he just didn't realize that I really am sick as I said I was. I think he's used of dealing with people that are in a panic state and have been shunned for years. Obviously he's a lyme doctor. My point is (I mean absolutely no offense by saying this) that a lot of people complain a lot. about stuff that isn't that serious. God that sounds horrible. I don't really know how to put this without seeming like a jerk. When I say my legs are so numb that I'm having trouble walking, I mean just that. I don't mean it's uncomfortable. I mean I literally can't walk. And to him I think he interprets it as I have numbness and tingling. Just an example.

I haven't been very good at communicating. My fiance is constantly downplaying things and I've let myself be influenced by him to the point that I don't speak up or reach out when I probably should.

I think I do have faith in him. There is a little distrust after what happened in April. Now he seems to be on board. I just distrust doctors anyway after everything I've been through. They are all human and they make mistakes, but his mistake could've costed me my life. So I'm trying to rebuild with him.

I know he's a good doctor for a lot of people. People travel from far away to see him. So. To answer that question ya I guess I have faith in him. I think seeing him more often will make a big difference. And I think as long as I insist on being the squeaky wheel when I feel like something is right I should get greased up lol.

I need to be a better patient. I can't take all the responsibility for what happened to me because I did tell him I didn't feel good. But he was too busy to deal with me when I needed help. He has no on call line or anything so when the office is closed I'm on my own.

This is getting rambly. Sorry lol
Posted 6/26/2015 9:50 PM (GMT 0)
You're lucky to have such a good MIL. I'm so glad she's able to help you part of the time.

You have good reasons to not fully trust your doctors. I think many people feel that way, even non Lymies. It is too bad he takes calls during your appt.

The NW just doesn't have enough Lyme doctors for all the people who are ill. I'm not sure what we'll do if we lose our doctor. I'm anxious to hear how he's doing. He has a lot of patients, both with and without Lyme.

Any way...I'm glad you've resolved some things by talking on here. You're good at that. Keep up the fight!
Posted 6/26/2015 10:23 PM (GMT 0)
You might lose your doctor garden peace?! What happened??
Posted 6/26/2015 10:34 PM (GMT 0)
I dont think some people do well with Diflucan. I was afraid of abx and I take what I can tolerate. You can also work up to the desired dosage. In every case treatment initially made me tired but very soon after started I COULD FUNCTION. That is why most people refuse to cut off abx. Hope you feel better soon.
Posted 6/26/2015 10:47 PM (GMT 0)
That's where I've had a hard time relating to others. I've said it multiple times that it seemed like I was having a different experience. I've never felt much better while on or off of abx. I get a lot worse and my lows are lower no matter what.

Maybe I just need to play around more with mcad drugs. Maybe that's what's been holding me back.

It's strange to me that diflucan always made me feel better and then last time I took it I had an allergic reaction. It doesn't seem right.
Posted 6/26/2015 11:26 PM (GMT 0)
Ok-no-u do not need to be a better patient! Even if this guy is god's gift to lymies, u are paying him & YOU have been VERY sick!!

ILADS conf folk probably benefit from this doc sharing your story. That's not to say this man is not a compassionate healer, but he gets creds for u, too, right? The bread buttered is on both sides.

So-what bothers me is this is not the first time you have said the doc is too busy & his attention divided. Yes, I get it-- lots o' sick peeps. -But- when he steps in to see u, undivided attention needs to be on U.

YOU are that important!

I would suggest that if you are staying with this doc, which it sounds like u are, then you need to communicate with him your concerns. Perhaps write it down (U were literally close to death...Every time u talk with him, tho u appreciate his vast knowledge, u do not feel heard. And although there are so many sick he tends to, you really need an uninterrupted appt....yada).

As your MIL has been there for u & does have a medical background, why not let her be "the bad cop"? Ask her if she would convey this to the doc.

YOU R that important!

Stereotypically (!) men can downplay things so try not to let it get u down when ur fiancé does this. Maybe he really doesn't understand (who would unless they've been to this hell?!) or maybe he's just trying to cope. It's not easy for them either--He sees his love going thru such torment & he is helpless. If he truly is too nonchalant & it hurts, then gently let him know. X
Posted 6/26/2015 11:32 PM (GMT 0)
P.S.-re your body reacting diflucan-is there another substitute? Also, look back on your journal b4 your good days--I wouldn't immediately discount abx being of help.
Posted 6/27/2015 2:41 AM (GMT 0)
Thanks HappyJo.

There is another substitute for Diflucan. And who knows, maybe down the road I'll be OK with it again.

I'm hesitant to go to another doctor for mostly financial reasons. I feel like if I could be more well versed I could direct my treatment better. He's open to my concerns and always is up to try my ideas. So if I could get to a place where I know more about all the meds and just lyme in general I think I'll be Ok in his care.
Posted 6/27/2015 2:48 AM (GMT 0)
I'm so sorry you're going through this.

It's so overwhelming and confusing.

Just don't forget, there are others out there who are having very similar experiences.

It's hard to keep having to try one treatment, and then another one, and so on and so forth.

Then you feel like nothing works.

btw, Diflucan can cause a massive herx.

Better to go with Nystatin, and treat it as you would abx.; titrate the dose up a little at a time.

I hate this f-ing disease, and the fact that noone out there understands it!

Margaret
Posted 6/27/2015 8:32 AM (GMT 0)
It's Friday night or rather Saturday morn-1am as I write this due to insomnia!

I'm so sorry you're having such a horrible time dealing with this dang illness. Last summer of 2014 thru this June, I was where you're at now-what you wrote could've easily been my sentiments exactly!

I've been seeing an LLND who has a very slow gentle protocol-or so I thought early on until I experienced the herxing. I just recently started back up with the herbal tincture after being off of it for 2 &1/2 months(I think it was), & May early June was bad. I've been doing pretty good these last few weeks and fear its just a remission; ESPECIALLY since that's the way its been for me since 2008-remission-relapse, even during treatment.

I've never been treated w/ABX, just the herbal tincture because my Dr. believes my biggest root cause that basically disables my immune system is reactivation of HHV6, alongwith the many other human herpes viruses I have. I read a book called, 'The virus within' that made me realize I cannot fight ANY bacterium w/out 1st getting the viruses back to dormancy(if that were possible)!

I'm just replying here, about myself, as I don't think you need any more advice-just people to relate with/to???

Anyway, when I read your post I was so heart stricken that I found myself feeling a sense of urgency to reach out & help people more. I'm fortunate that I'm still mildly active and do not work so I have FreeTime.

So thank you for Sharing, and please continue to do so.

I hope it's O.K to say, I'm praying for you-& I mean that! Hugs to you!

Oh BTW-I've been known to say that I often feel like something is taking over my body-changing me like a GMO!
Posted 6/27/2015 3:10 PM (GMT 0)
Thank you sweetpea! It is very nice to relate to others that have the same problems.

How are you doing now?
Posted 6/27/2015 3:34 PM (GMT 0)
Hi IHL,

I read your thread yesterday and I wanted to get back to you, but I have been so sick this week I ran out of steam! I have been feeling exactly like what you describe for weeks, moths and even a few years. I was diagnosed with lyme in late 2013 after a camping trip and quite a few "bug bites" including fleas from the raccoons that kept getting into our gear. The deer were all over our site also. It was a very wooded section of the Sierra Nevada mountains in California.

I ignored the diagnosis (tested thru Igenix and positive, not CDC positive) since I was holding on to that ray of hope they were wrong. I was bitten in my early twenties in CA, never tested, but had all the symtoms, including a very last rash on my stomach (too big, they told me). and Iv'e been sick with one thing or another ever since. At that time they said I had Fibro.

LOng story short..... I ve been assured it's lyme (maybe other things) and I have been terrified of treatment ever since! I have a very weakened immune system. My natural docs are very affraid of me getting much worse with the aggressive way the LLMD in San Fransisco wants to start treatment. He does not believe any natural cures will help at all since he says I have late diseminated neurological lyme.

I live in such a rural area that does not recognize nor treat lyme, I'm affraid of complications. I got very sick from an herbal tincture that my natural path tried on me. I also only have tylenol to take for pain and my liver is getting increasingly more painful...

Longer story short...not... I'm affraid I will start treatment, end up in a small town hospital and never come out again! I have often thought I have PTSD from this monster inside me.

I also know I will not get better without, strong, aggressive, IV treatment for my neurologic lyme.

I used to call my chronic denial of this "my expedition down the "de" Nile river" (in Egypt.) Now I just call it "the boat sank, lost my oars, and I'm treading water as long as I can"

Hang in there sweetie! I go back to the LLMD in August and the doc will be asking what did I do with the last three months. (Not taking your meds...) but that will have to change soon.

I'll pray for you. Please, if you would, pray for me. I am really beyond scared, Im glad there is someone else out there that feels that way too...at least enough to share it!

Hugs!
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