Really Needing Support, Encouragement, and Advice

Hey Guys,

I am really in need of some love & encouragement right now. I feel quite hopeless & trapped by my Lyme treatment and I don't know where to turn. Dr W in Denton, TX is my LLMD and things had been going alright in terms of the course of treatment and my ability to manage timing of meds & supplements...at least until this week. I started Doxycycline yesterday and it says to space it 2 hrs apart from all vitamins, iron, supplements, and dairy products, which already felt nearly impossible given the fact that I take 27 prescription meds and 19 supplements (most supplements are from Dr W & happen twice daily)...then Dr W added Cipro to my regimen and things got even more complicated cus no supplements can be taken 6 hrs prior or 2 hrs after this antibiotic. There's just not enough hours in the day to manage this...both Doxy & Cipro have to happen twice a day. I'm sorely tempted to stop the oral antibiotics and move on to a PICC Line or a chest port & IV meds as it'd eliminate the interactions & malabsorptions. Sadly, Dr W hasn't given me any insight on how to manage the timing of all of this.

Do you guys think that a chest port would be the way to go? I don't think I can figure this situation out with the antibiotics and I'm honestly tired of trying. I do have an extensive med spreadsheet trying to track what all I am taking and it's just all becoming way over my head. I just am beginning to realize that a chest port may be way easier than this mess. Esp because I think things will only continue to get more overwhelming & complicated as my treatment progresses. Do IV antibiotics have the same photo-sensitivities and side effects that Doxy, Cipro, and other oral abx do?

I am just feeling really alone & trapped right now. Sorry this post got so long.

Thanks,

Megan

Hi Megan,

I get "trapped" in the pill-schedule-thing too.... trying to figure out when/how to take the meds/ sup and what has to be on an empty stomach vs. w/food and what can't be mixed with another - it does get to be too much. I can't afford IV meds and my insurance won't cover it so I continue to do my best with the meds. I can't take my seizure meds with my antibiotics and I can't take both antibiotics at the same time, and there's more to the rules but I'm sure (and everyone else on this board) is already familiar with the frustration. My general rule of thumb is take ALL of my Rx meds as prescribed and to take the majority of the supplements "to the best of my ability" (for example, it runs in my mind that I'm not supposed to take Vit C when I take my Chlorella because the Vit C makes it harder for the Chlorella to work so I try to take them at different times of the day... but if I mess up, them I take them both at the same time and try to do better tomorrow).

One lesson I've recently learned is the "tyranny of timing" - the stress tied to getting up/ going to bed at the same time every day, taking every med/sup at the same time every day, with (or without) the proper food every day AND trying to work, have friends, have a life, relax and YES, ACTUALLY RECUPERATE FROM THIS AWFUL DISEASE can be unbearable - almost worse than just giving up. Remember that many of the meds we take, as well as the disease/ infection(s) that inhabit our bodies, tend to produce large amounts of anxiety and depression... compounding that with the stress of timing our pills/ treatment and it's no wonder you need some encouragement right now! Please take some pressure off of yourself, none of us can be perfect, no matter how much we want to conquer this monster, we have to let ourselves be human.

Please take care of yourself.

Megan, I can relate to the stress of it. I nearly had an anxiety attack when my partner changed dinner plans and I had already taken my doxy at the one hour before and two hours after eating mark and was at that 'hangry' stage (both angry and hungry). I found my pharmacist to be really helpful in figuring out some of my timing issues.

Best of luck,

Laura

hi there... l am so sorry for all your complications/ pain and discouragement...there is little l can do in the physical realm but l will pray for you by name everyday... there is such a mess with this lyme stuff that people are being mis -treated all the time...really sad...( please feel free to vent here... we understand... even though we do not have exactly what you have.. we are in the same boat...( can chat on e mail if you wish... keep on keepin on...YOU ARE WORTH IT...) RICHARD

Hi Nirupama,

I agree with you that this topic is a great one to get us talking about the harder parts of living with lyme. Even with my lyme doctors' guidance I still struggle with keeping my protocol straight! I think the best we can do is to rely on one another for support and occasionally advice.

It's interesting that aftr y9ou went back on antibiotics your symptoms worsened. I have the same issue because my protocol is 2 weeks of abx and mepron followed by two weeks of nothing. In either instance I feel horrible, By the end of my two weeks off I can barelky function or speak coherently.

And to Megan: I am sorry this journey has been such a challenge, but want you to know you are NOT alone. Never give up and keep moving forward- that is what I have to do one day at a time!

I hope you are all having a good day...

Hey Guys,

I really do appreciate all of the support & kind words. I sadly find myself feeling almost worse right now than I felt earlier. Through some not great advice, I managed to piss off my LLMD and make a royal mess of things. I posted about my struggles on a support page on Facebook and was private messaged by Dr W's daughter saying this: I'm so sorry you are dealing with this! It is all very over-whelming. Dr.W is my dad and I know for a fact that he would want you to text him. He cares very much and he should have laid out a plan/course to take meds, or had someone in his office help you with this. Do you have his number? I told her that I had it and that I would go ahead and text him as I was feeling extremely overwhelmed. Now, I NEVER would have dared to text him had I not gotten that message reassuring me that that was okay. Well, suffice to say that it wasn't.

He responded saying: You received the plan by email.follow it. Take supplements midday and in the evening. Please do not text me on my phone again. This is business that is for regular office hours. Now, the issue with this response is that neither he nor his office had told me any sort of schedule regarding the supplements. THAT's what I've been needing. The only schedule he emailed me was the one on how to start the new antibiotics he added, Cipro & Cleocin. When I responded to his daughter's message stating how angry he got at me, she just said: That's between you & him. I'm out. :-) Suffice to say I am pissed off but also extremely upset cus I hate having people angry with me, esp my LLMD. I guess I should have realized that I'd be overstepping, but I'm not exactly thinking straight anymore.

As if that whole situation wasn't enough, I also had a major fight with my parents over my inability to not make scenes when in public (which occurred after the Dr W fiasco) and was told that "they weren't willing to go the route of IV antibiotics". I don't know details of why they aren't willing to, but I hate that they're removing it as an option. I am just so overwhelmed by scheduling all of this and I know it's only going to get worse. I hate all of this...plus I managed to burn my face today despite lots of sunscreen & a hat so that whenever I've cried today (which has been a lot), it's made my face burn & hurt. Suffice to say I feel miserable & low right now. I'm really sorry for just dumping all of this on you guys...it does help to know I'm not dealing with this alone though.

Hi Megan,

First I would life to mention how brave you are to share with us your frustrations. Thank you for opening up- we are all here to help and are going through many of the same things. I hope you feel less alone with us here to vent to.

I think LostGirl really hit the nail on the head with her advice. I especially like her points about doctors' communication. My Lyme doctor gave me her e-mail if I need to ask questions. Perhaps your doc has an email address for patients? I am very sorry that his reply seemed rude but I suspect he will get over it very quckly because who knows how many people his daughter refers to his phone!

Also the mission outlined by LostGirl is great; whichever one applies to you the most start there...only one thing at a time is what I can handle so maybe you are the same?

It is not your parents decision if you get IV antibiotics- that is between you and your doctor. Perhaps they could learn more about it- have you seen "under our skin" the movie? I made several of my family members watch it so they would have a better understanding of the disease. I hope tomorrow is a better day for you. Never give up hope that the good days will come!

Hi Nirupama,

Great advice and thank you for the med ideas. I especially like that you state we cannot be hard on ourselves during the times we cannot function as well. The most important relationship is the one we have with ourselves...without that we cannot be there for anyone else. I think it is very important to take it easy and slow when needed as you mention. I also advise just focusing on one goal at a time lest one becomes overwhelmed. Sometimes I look at the day and all the things that I could do and it turns me into a deer in headlights because I do not feel good and don't know where to start to make life a living experience rather than an existing experience. Thanks again for your insights!

Excellent analogy dkel!!! Exactly what I mean when I say I have to take care of myself first. Some people think that is selfish, but I disagree. I cannot be a good mom or apply critical thinking if I am not first ok as can be....my oxygen mask on first as you say.

Hi Megan,

How are you doing this week? Am thinking of you and wishing you well.

Hey slmo,

I've been having some good days & some bad days. Recently, I have been struggling again, but not for quite the same reasons as last week. I had some emotional upheaval continue in the beginning of the week, but that's thankfully calmed down in the last several days. I have begun to experience a lot of stomach upset & pain though since Thursday and that's been wearing me out a lot recently. I've been lucky in the realm of tolerating all of the abx & meds with little difficulty, but I think my luck has run out.

I went through a number of medication changes starting on Thursday, so I'm pretty sure my current sick feelings are attributable to that & not due to something else. I started taking the Cleocin (300 mg) twice a day, added the 2nd dose of Doxycycline, and started Artemisinin. I am feeling pretty dang miserable right now though. I'm really hoping that things settle down soon though. I know that this next Thursday will see a lot of new changes too...I will double the dose of Cleocin & add in Cipro once daily. I am just managing the timing of the supplements to the best of my ability at this point.

My Dad asked me to send him all of the info on my current regimen and he said he'll type up my concerns & some questions for Dr W and fax them to him. My Dad knows how to get things done & I am going to let him have the reigns some in this situation. Dr W's office did contact me on Thursday inquiring if I had figured out the timing of things, but they didn't provide any more guidance than before when I told them that I was still struggling with the timing. I think I've gotten things figured out for right now, but once the Cipro starts next week, things will become even more complicated with timing & I'm not sure how I'll figure things out.

Everything just feels so overwhelming much of the time and my feeling sick doesn't help anything. I have no energy for getting things accomplished. I really appreciate your thoughts & well-wishes slmo. I hope things have been going well for you.

~Megan~

Hi,

Thank you for the words of wisdom concerning probiotics. I do take two different kinds of probiotics at this juncture. I take 15 billion organisms of Saccharomyces Boulardii (Saccharomyces Boulardii + MOS) and I also take 100 billion CFU's of another type of probiotic. I do try to space the probiotics out as much as possible from the antibiotics that I'm taking. It is possible that I'm still not spacing it out enough & the probiotics aren't as effective as they may typically be.

Thanks,

Megan

Hey All,

I was relatively recently diagnosed on February 14, 2014 and began treatments for Lyme in April of 2014. All the signs point to my being infected as a young child in TN and it's just taken a very long time to discern what was really causing my problems. I went through a lot of doctors & a lot of misdiagnoses...a lot of feeling like I'm nuts & having my parents/practitioners think that I am nuts...which I think is pretty typical for Lyme Disease.

My LLMD also diagnosed me with Bartonella & Babesia as well, so I have a great deal more neurological & psychiatric symptoms I think than might be typical with just Lyme. I do have a lot of the physical stuff too in that I suffer from a great deal of chronic pain & was thought to have Fibromyalgia...it just doesn't interfere nearly as much as the other issues I struggle with. I am on a gluten-free diet and I follow a medically-supervised weight management program called Ideal Protein which I've had a lot of success with...I have lost about 90 lbs.

At this point, however, I have kind of taken a brief respite from the strictness of Ideal Protein (though I am not going crazy or anything) due to not having the energy or motivation to stick to the exact protocol. I am happy as long as I am maintaining this weight loss & trying to take care of myself as best as I can. The protocol is strict about only veggies & protein and it puts you in a healthy state of ketosis. The three back surgeries I went through from May 30th to July 2nd also threw me out of the mindset that I needed to continue with the program. Once I have gotten myself back into a place where I can focus again on the program, I do plan on trying to lose some more weight as I am still considered overweight/obese. I have continued to be Gluten-free though and maintain some of the cleaner eating protocols that I've learned.

Thank you guys so much for being there for me. I can't tell you how often I find myself feeling completely alone...often even in those times I find myself in a crowd or with my family & friends. I think a lot of it as to do with them not really knowing how hard things are for me and they tend to blame me & judge me a lot for the things that I cannot control. I love living by myself in that I am outside of my parent's control & I have some independence, but it's a double-edged sword b/c I can rarely snap myself out of my head w/out help from someone outside & my two cats are sadly unable to assist me there. Anyways, sorry for going on so many tangents, I just want you guys to know that I really appreciate each & every one of you and I don't know where I'd be if I didn't have you guys to turn to for help & advice.

~Megan~

Hey dkel9307,

When I was saying "TN", I was referring to the state of Tennessee, where I was infected. Are you referring to something else when you say "TN & Lyme are two of the worst illnesses to have"? I have multiple diagnoses, but not one that is abbreviated as TN. I have been diagnosed with Lyme Encephalopathy, Myoclonic Seizures, Carpal Tunnel Syndrome, Neuropathic Pain, Hypothyroidism, Chronic Pain and others, but I'm not sure what TN stands for. Could you educate me dkel9307?

Thank you,

Megan

Oh, no worries. I looked up Trigeminal Neuralgia and I am very glad that isn't a common complication of Lyme. It definitely sounds like an extremely painful condition.