new Lymes diagnosis

[smokey56]

Hi, I was just diagnosed with Lymes disease, I am scared, frusturated and feel very lonely. I have a LLMD, but how do you know if they are really good or not? He seems like a great guy, but.... thank you for your help

[JackieCalifornia]

Awww, you're very kind.  Thank you.

There are lots of folks who post here with good advice, and we all cycle in an out as life events permit.  Thanks to all who contribute here, both questioners and answerers!

[smokey56]

Hi,

I just wanted to take a moment to thank JackieCalifornia for her sound and comforting advice, support, and comfort. I don't know what I would have done without her these last weeks. Knowing that she too is suffering makes her effort to support others a very special sacrifice on her part.Thany you Jackie, you rock!!!!

[JackieCalifornia]

I'm glad the tip about magnesium was helpful ... I don't know why MDs don't suggest it ...

Yes, I've seen Under Our Skin, and it is alarming.  Actually, I think it comes on too strong without explanation that not everyone gets claw-fingered like the blond -- it could really scare the woops out of someone newly diagnosed (or fearful of diagnosis), and anxiety (as a biochemical side effect of Lyme infection) can be off the charts.  I hate to hype people's anxiety for no good purpose.  It is a very good movie for explaining the muddle that Lyme is, however, and for that it's good.

I would also recommend the book 'Cure Unknown' by Pamela Weintraub, if this hasn't been mentioned to you before.  The title is unfortunate, but the book is informative and  riveting.  The author is a trained science journalist, and her family all got Lyme living in Connecticut.  She has been through the mill like we all have, and she brings together the personal threads of her family story, the individual stories of various people (including scientists and MDs) infected with Lyme, and the politics and science.  A really splendid book, imo.  Now in paperback.  

To answer your question about how my regular MD reacted to me 'going rogue' with an LLMD ... by the time I found the LLMD, I didn't have a regular MD anymore, at least not one that I cared about seeing.  When I was first ill with Lyme and babesiosis, my then-internist thought I was just hormonal, and actually got me tossed out of an emergency room when I was having heart irregularities (again, low magnesium from the bugs slurping it up).

I'd suggest you try your current, regular MD and tell him/her about the Lyme diagnosis, and if s/he reacts badly, then you might ask your LLMD for a suggestion of a 'regular' doc to see on nonLyme matters.

Through a referral (from my dermatologist, who has family with Lyme), I found a new internist who is very wise and has seen a lot in an long life, and she is guiding me through getting over the fungal infection and buffing up my immune system to finally deal with the Lyme etc., partly by treating an unrecognized thyroid deficiency (!).  

So ... you may or may not be able to reach a working arrangement with a current general MD/internist who respects Lyme, and your LLMD may not have the band width to take care of all your needs ... but there are broadminded MDs out there.

You're going in the right direction!  Keep going!!

[smokey56]

Hi Jackie,

Thank you for sharing your unfortunate experience with probiotics. Also, thank you for the advice about magnesium, I talked to my LLMD and he said that he totally supports that advice, so ... thanks for that!!

I watched a video last night called "Under Our Skin," have you seen this before? What a real eye opener. My husband and I thought that we were gaining tiny amounts of ground through our constant reading but, this video really drove home the TRUTH about Lyme and the co-infections. We will be reading everything that we can get our hands on as well as talking to people like you and others who have "hands on" knowledge.

One question we have is, how did your MD respond to you treating your lyme in the LLMD world? I am so afraid that my MD will drop me when I tell her but... that is a chance that I have to take.

Have a beautiful day, I wish you well today and always.

Kim

[JackieCalifornia]

Thanks for the kind inquiry about how I'm doing -- I'm way better than I was, but still not fully where I want to be.  I had a bad reaction to some probiotics I was taking that were supposed to prevent problems of long term antibiotics killing all bacteria in the body, including the 'good' bacteria, and I'm still trying to get sorted out.

I don't regret taking the antibiotics, and I had an usual reaction to some probiotics I was taking (ironically) to prevent problems.  My LLMD said he had never seen anyone react to the probiotic the way I did, and it appears to be my peculiar genetic makeup that made me susceptible to problems.  

So the short story is, I didn't have problems with the antibiotics.  There are good reasons not to take antibiotics if they are not needed, and they should be taken as prescribed, but they are of course not without risk.  That said, I would definitely take them again, just have to figure out how to handle this strange situation I'm in.

Here's a thought about the muscle pains ... when I was first infected and not yet diagnosed, I would wake up in terrible pain every day.  A nanosecond before my body woke up, my mind would be a tiny bit conscious, and then wham, my whole body was in aching pain.  I also would wake up sometimes in the middle of the night with charley horses in my calves -- I had never had anything like that before.  After I was diagnosed with Lyme and babesia, I read that Lyme bacteria use up magnesium in their reproductive cycle, and lack of magnesium results in  ... muscle cramps.  I started supplementing with magnesium capsules and the pain stopped.  

You can try soaking your feet or body in Epsom salts, which are magnesium and will be absorbed through your pores.  Or you can take capsules.  I've read that any magnesium form ending in -ate (magnesium asporotate, magnesium orotate, magnesium malate, etc.) is the most absorbable by the body.  I've also read that if you take too much magnesium, you will get diarrhea, and that's the sign to back off on the dosage (duh).

I DID have an MD tell me that too much magnesium is hard on the kidneys, so not to overdo it, but I didn't think to ask him if getting diarrhea occurs before or after the kidney damage event.  Other places I have read say 'take to tolerance', meaning till diarrhea occurs.

Currently I take magnesium twice a day, a total of 100% of the MDR.  It also helps with sleep and anxiety, at least for me.

I'm not medically trained, so don't rely on me for medical advice, okay?  But these are some places to start.  Take care --

[smokey56]

Glad to hear that this anxiety will subside, it gets so bad sometimes that it is scary.

The pain I have is burning, stabbing, throbbing, it is in my joints, muscles and head. The worst right now is the esophagus, it is "mind bending." It spasms so bad that it makes my chest and back feel like they are in a vise. I am definetly fighting depression too, most days I do not leave the house just because all I do is cry. I am grateful for a caring and loving husband, I am sure that his patients wear thin somedays too but he is good at hiding it.

How come you are not being treated right now? I am guessing that my LLMD will also work on the "babs" first too, tho I don't really know. I am anxious to get started, I want to feel well again so bad. Do you think that you will restart treatment any time soon? I sure hope so.

[JackieCalifornia]

PS  Yes, anxiety was big.  It's from the Lyme irritating the brain, as I understand it, but I don't know the details.  The anxiety will subside with treatment.

[JackieCalifornia]

I had Lyme and babesiosis too.  The 'babs' was worse than the Lyme -- my LLMD worked on the babs first, and after it was gone, the Lyme doesn't (knock on wood) seem so bad, but it still lurks since I had to stop treatment.

What kind of pain do you have, where?  Joints, muscles, head?

[smokey56]

Hi Jackie,

Yes, I have been tested for co-infections, at this point he says the babesia is present, we will be testing for the others over the next few weeks.

Thank you for your explaination of Herxes, you have really helped to calm my mind down. You are right, the pain I have endured for the past several months has been unbearable at times, so, how bad can the herxes really be beyond that?

Did you have anxiety associated with your illness? It definetly makes the situation worse, I have been working on meditation to help with this but, so far, the pain/anxiety is winning.

I feel like I am going to beat this beast and with the help of wonderful people like you, I feel like anything is possible.

[JackieCalifornia]

You're quite welcome -- there are many here who can give you their experiences, and one thing is for sure:   Lyme is different for everybody.  That's partly what confuses the docs, I think.

Your LLMD sounds like a very good start!  With Lyme in his family, it gives him a view that not all docs have.  

Don't worry about the Herxes ... they are worse for some people than others, and vary in the same person over time.  Personally, I never had a Herx as bad as my disease symptoms had been.  Everyone is different, and the most confusing thing about a Herx for me is that I don't realize I'm having one and I get a bit freaked out that I'm getting sick(er) again, and then the next day when I'm better, I realize it had been a Herx.  My Herxes last about 24 hours start to finish.  And remember, having a Herx means the bugs are getting pounded.  That's good!

The intensity of Herxes seem related to the pounding the bugs are taking from the meds, and if the Herxes are too strong, then your doc should be told so he can maybe pull back on the meds to a more reasonable level.  Everyone is different, and a wise doc will know that.  Herxes can be scary because it feels like sliding back into the pit, but it's really a good sign that the meds are stirring up the bugs so they are being drawn out into the open and killed.  

Did you LLMD test you for co-infections, other diseases carried by the same ticks that bring you Lyme?  

[smokey56]

Hi Jackie,

Thank you so very much for your honest words of encourgaement, it sounds like you have been through the mill but you are certainly coming out on the right side. I will certainly take your advice and give this LLMD a chance, so far he is a good empathetic listener, his wife also has Lymes. We will see how the treatment goes, I am looking forward to sharing my progress, I am so freaked out about the herxing period tho that I need to get past it. Did you go through that period? If so what was it like for you, and how long did it last? Thank you for support, I wish you well always.
Kim

[JackieCalifornia]

Welcome to our corner of MedHelp.

Scared, frustrated and lonely ... yep, that sounds like many of us.  You are not alone in this.  Also at times angry, worried, discouraged, and confused.  And sometimes hopeful, feeling better, and making progress.

The first hard thing is getting a diagnosis.  Sounds like you've accomplished that.  Good!

The second hard thing (or sometimes the first) is finding the right doc.  That's one of those things you'll figure out over time.  It's like dating.  Some relationships get better, some get worse, some are just middling.  As long as the doc 'believes' in Lyme and in treating it and doesn't just blow you off and tell you to get over it, that's a pretty good start.  Docs being human, tho, you'll see as the relationship develops whether there are things that aren't working, and that's when to consider looking around for a new doc.  

That's all true of any relationship with a professional -- your mechanic, your dentist, your dry cleaner, your LLMD.  The problem with changing  LLMDs is that they can be a scarce commodity, so finding a new one may take a while, and if you decide you need to check out some alternatives, I'd recommend looking for and getting an appointment with a possible new LLMD before you terminate your relationship with the old one, because there are long waits (which you may already have found out) and the new one may not be any better than the old one.

Each LLMD has their own preferences in treatment and approach, and that makes it hard to pick and choose who to go with, because docs (unfortunately, in my mind) don't feel any need to explain to new patients what their theory is and how they propose to treat.  If you do go looking, then the new doc will want to know how you know you have Lyme, etc., and then you'll need to say you are just checking because you're not sure the current treatment approach is working.  Some docs won't dish after that ... professional courtesy, I guess, not wanting to contradict a fellow doc.  So it's a delicate dance.

I am always very upfront with all my docs about who I'm seeing and for what and what treatment I'm taking, but that sometimes has the unfortunate effect of some docs refusing to treat me, because they disagree with other docs of mine.  Especially in the Lyme area.

These are issues to keep in the back of your mind if you feel like the current doc isn't right for you.  Lyme is the wild West when it comes to treatment, so Dr A and Dr B may have completely different theories and approaches, and you just have to go with your brain and your gut on who to follow.  

So in your shoes, I would continue with the current doc, try to educate yourself about Lyme generally, ask questions, and think about starting to look for a new doc as soon as you feel like things aren't going well with the current doc.  As in:  he's not listening to you; you can't get in to see him or get answers to questions; you don't get explanations of what the gameplan is; and so on.  My LLMD is a genius, but not so smart in some ways -- he didn't realize I was having a bad reaction to the meds I was on, and when he did realize it, he tried to give me other meds to counter the ones that were messing me up but wanted me to stay on both of them.  I didn't feel comfy with that approach and have been working with another MD to get straightened out ... what then, I don't know.  

Many of us here have realized we have to be our own watch dogs, and it sounds like you already understand the necessity for that, hence your question:  'how do you know if they are really good or not?  He seems like a great guy, but ...'  

You have it exactly right.  And you'll figure it out over time whether he's the right doc for you.  Keep asking questions and educating yourself -- that's all that you can do.