Read Between The Lyme
#LivingwithLyme
Meltdown City, Next Stop!
What brought all of this on, this visit to Meltdown City? Although I didn’t share it with you (yet), about a month ago, while I was still in school (working) I had a terrible Rash (in fact, it does deserve a capital “R”) on the left side of my face, on my left had, a few spots on both of my lower arms, and inside of my thighs. It came on suddenly. It took a over week, a trip to Urgent Care, 2 trips to my LLMD and a week out of work, along with several medications, to get rid of it. The reason I haven’t posted about this incident is – don’t laugh – is that it was pretty traumatic overall. I promise to tell the drama soon. Anyway, it finally went away, but there was no consensus as to what was the cause (except it was not parasitic).
It went away, school came to a close, my step-daughter graduated (happy dance!), summer started, on and on. Early in June, my doctor put me on this cool supplement called ATP Fuel for my low energy, and I have really been seeing some brain improvement function from it which was a real lift-me-up these past few weeks. Now, I am not saying I am “cured.” Not by any means, but I am certainly feeling like I had managed to get over a significant hump since severe fatigue has been one of my most loyal companions over these past few years!
Let’s just get downright crazy and say that mentally, I’ve had the best 2-3 weeks that I have had since before being diagnosed with Lyme in March 2013. It has sincerely been that big of a deal at, least to me. This past Wednesday, I had an itch near my left eye. Bug bite. That then spread all around my left eye, down along my jawline, and under my chin.Pretty much the same area that the Rash showed up a month ago. It was basically a battle to get into my LLMD. I do not have dermatologist, but I did call around, and I was able to get an appointment for Tuesday. However, knowing how horrible this Rash became last time (the top of my left-hand is scarred now), I saw my LLMD yesterday afternoon. To say this appointment sucked is an understatement. She put me on several medications, anti-viral, steroids, anti-itch pills, and said I must be getting into something and that it will clear up.
I asked, what if is doesn’t clear up? Answer, go to a dermatologist. When I asked if I should come back in for her to check me as well, she said no.It will clear up by Monday. Huh? I asked how will we know what is causing the Rash, and what if it comes back (you know, since this is 2 time in 4 weeks), and she basically said it may never come back. Well, yes. That is one way of looking at it. And while that in fact is true….I HAVE LYME DISEASE! It has taken over my immune system, MY BODY! I’ve had weird rashes in the past, I get cold sores a lot, I have chronic EBV. SO LIKE FOR REALS, LADY. Saying that it might never return is like laughing a the Gods. I don’t like this plan.
My left eye was almost swollen shut this morning, and the rash had spread to the other side of my nose and there was more on my left cheek. My mom picked up my meds for me, and I got started right away. Everything just closed in on me today. Not from this damn stupid rash, really. I’m just tired. I swing from one health crisis to another with barely any time in between to just feel like I have JUST Lyme. I’m not even in school right now, surrounded by close to 4, 000 people a day. Yet, I have a recurring Rash that my LLMD doesn’t really think is an issue. So yeah, the Meltdown City. In the shower. Me, myself, and I.
I think at the crux of all of this is the truth I am beginning to realize, or maybe now I am closer to accepting, is that the LLMD that has helped me thus far, is not going to be the doctor to take me into remission. Not from where I am right now, and not with how I am being treated (protocol). There are no other LLMDs here in the HOUSTON area. Seriously. It is too risky for doctors to advertise that they treat Lyme disease and many don’t. They do not have the first clue about Lyme disease. Truth. So, I continue to periodically request an LLMD list from the Texas Lyme Disease Association hoping that maybe a new name has been listed. And that the doctor listed takes insurance. Most do not.
This causes a whole other wave of worry to hit. Going to a doctor who does not take insurance means lots of money out of pocket. Depending on the doctor, it could run $700-$1500 per visit, not including meds, supplements, etc. LLMD doctors usually do not take insurance because they do not want to be beholden nor required to treat Lyme only by the approved and antiquated guidelines of the USA set by the Infectious Disease Society of America (IDSA). Many doctors across the US have been stripped of their license to practice for not following these corrupt guidelines. Of course though, insurance companies use these IDSA guidelines as standards for care and so even if one is LUCKY enough to find an LLMD who takes insurance, some things are not covered at all because the treatment doesn’t fall within the -again- corrupted and antiquated guidelines.
But I have an LLMD that takes insurance and here close enough to where I live. I thought I was so lucky! And yes, she saved my life. I need more now though. My visits with her consist of about 10 minutes time. I list out everything, she focuses on the most detrimental at the time, reviews my blood work from the last visit, usually 3 months ago, and based on that she tells me where we are going, and sends me for blood work – labs we will review 3 months from now. WTH. There is no talking about nor treating any lingering symptoms, talking about detox, diet, anything really at all else about this complex stuff happening to me. Co-infections being addressed? Not at all.
Finding someone new that I have to pay out of pocket, that is probably 3-5 hours away, is just freaking me out a bit. On top of all of that, I am worried about how much more I can work. I’ve pushed through and I want to work, but this past year has been extremely tough. I’ve been sick with other things more than not, and I am wondering, maybe I need to give my immune system more time to heal before I mix it up in the petri dish of high school. And since my LLMD only spends 10 minutes with me, I try to bring this up, but again, she also works crisis to crisis and that is just not cutting it anymore. Then, if I can’t work, how do I go see a doctor who doesn’t take insurance? How does all of this get managed when my eye is almost swollen shut, and I want to itch off the left side of my face?
Oiy. I just do not know. I’m trying to wrap my head around everything right now. I may have to visit Meltdown City a few more times before I get it all figured out.
I hope you and yours have a safe and wonderful 4th. Namaste, my peoples. – Belle
P.S. Maybe read some Declaration of Independence, eat a burger, drink a brew and maybe read a little taste of where I was last 4th of July – Fire in the Hole
18 Comments on “Meltdown City, Next Stop!”
Leave a comment
Happy Talking
Chronic Illness Bloggers Network
Blogger Recognition Award
Happy Talking
Check these posts out!!
Your Kindness is APPRECIATED!
OR
Read Between The Lyme 
❤️❤️ I’m sorry you had a meltdown but hope it helped a little
LikeLiked by 1 person
Thanks. It usually does help me get over it and get a better perspective! 🙂
LikeLiked by 1 person
Good 😊
LikeLiked by 1 person
Have a great weekend!
LikeLiked by 1 person
You too. Happy 4th of July 🇺🇸🇺🇸🇺🇸
LikeLiked by 1 person
I think you need to get yourself to a naturopath. Ask friends and family who they use or recommend. I’ve found the best help from those without MD after their names~they listen and don’t just treat the symptom, but try to figure out the cause. My naturopath can order blood work as well, so you want to find one that can do that as well. Since you are experiencing the same symptoms, your body hasn’t gotten rid of the virus that is causing the rash…probably just been masking it with what the LLMD prescribed. Also ask about whole food supplements. I use ones from Standard Process that I get from another natural practitioner that I see. Keep track daily of your symptoms so when you do find a new practitioner, you can pinpoint dates and symptoms for them to get you on the right treatment path. Good luck…it’s not fun to be sick!!
LikeLiked by 1 person
Hi friend
You’re getting the wrong end of stick!!!!! Did you do IV Therapy or drugs only? My Pa spends 2.5 hours with us. Who knows what their problem is but they will never get you to home plate with that attitude. If you look for another LLMD only look in the Ilads directory. There are all the doctor’s who practice Lyme either pill or IV. The group you’ve contacted are the group who don’t buy into long term antibiotics.
Dr. Horowitz is not a member of ILADS but he has great videos on YouTube spelling out every supplement his patients. I’ve been on IV for 7-8 months and transitioning to pills. I still had close to 40 supplements to take. I cheated many times.
You have not seen what a good doctor can do in getting you well. I heard there was someone in Houston but don’t recall a name. If you come to Dallas do not see Ronald Wilson, you’ll get more of the same.
You’ve been ill 3 years or 3 years to diagnose and how long on treatment.
I don’t buy into Naturopaths when my life is at stake but many go. From what I’ve seen, you go to their facility, stay the whole time you are under treatment.
The bitch is the co-infections, I have two. It’s knowledge about how the parasites work and some guess work. It attacks every different.
Do you feel like your dying? I’m there! If not watch the videos of Dr Horowitz and see the names of the supplements. Don’t get fooled into buying from a Medical Grade place, $200 for a $50 product at Vitacost. They are the least expensive most of time.
MD Anderson rings a bell but with Lyme No Brain I can’t recall why. Contact as many resources as you can to see if trials are going on. You can always say no if you’re past the point or whatever.
I did months of research, even diagnosis myself, I might call the top Doctors to see if they know of trails or even a part of a trail.
What your getting know I hate to say, is putting money in their pocket and they don’t care about clients. Or Bigger problems!
I certainly don’t have all the answers but I’ll be glad to talk anytime you want.
We have the disease which keeps the CDC from changing their position. If CDC won’t acknowledge anything over a couple of weeks, insurance will not and medicare won’t either. I trust my doctor 100%, but I see the results. The reason LLMD’s don’t take insurance is they track the levels of antibiotics and will you are called before the Medical Board. That’s how my Doctor lost his licensees for 2 years. He was critical in discovering AIDS and they take his practice, had to go bankrupt, treated the worst for free.
You want a doctor who will be there every step holding you hand letting you know what’s going on.
Past my bedtime!
🙂
M
LikeLiked by 1 person
Hi thanks for your your insight! I did do iv abx for about 5 weeks in summer of 2014 but then insurance wouldn’t cover any more. The rest of the time I’ve been on oral abx – about 3 years worth. I have looked at getting into trials but I can’t seem to find any. Unfortunately, even though I live near one of the vest medical hubs in the US, Lyme is just not part of it. I will check with ILADS though for different doctor options. I don’t know why I haven’t already. Also I will definitely check out the Horowitz videos. I have his book and it actually has helped me a lot with asking my doctor about things but I need to do more and know more. I really thank you from the bottom of my heart. I will keep you updated on what I find out. I would love to communicate more. Are you on FB or maybe we can do email? The doctor I see was also very crucial in the AIDS treatment back in 80s! I really like her but I know I have to get someone who can take me from where I am to a better place at this point. Rest my friend!!
LikeLike
Hey there, I did some looking and I found some of Horowitz’s videos on Youtube. hanks a bunch!!
LikeLike
Not having had this dreaded disease I can only sympathies and hope you find a doctor who can help you get through this. Good luck — really.
LikeLiked by 1 person
Hi Hugh, you are always so kind to me. I am diligently reading, researching, chatting with people here and in my FB Lyme groups just trying to get a better grasp on everything. Lyme is like peeling an onion. Cliche but it works. You get one layer done and taken care of – you think- only to find more mess. I hope you and yours have a great weekend. Going to pull out some Jefferson for some light reading tomorrow. 🙂
LikeLike
Good choice.
LikeLiked by 1 person
Ugh, that sucks that there isn’t anyone in your area … I’ve had a difficult time as well, and I live in CT. You would figure that the epicenter of this epidemic would be a little more progressive with treatment and specialist availability. Sadly, no …
Research Horowitz’s protocol, and Cameron as well. Both have helped me tremendously.
LikeLiked by 1 person
I have a list from the Texas organization and from ILADS as well. Not many on ILADS list and one of the 3 is who I see now. It really is crazy! And yes, where you are you would think there would be tons of doctors in the Lyme business!
LikeLiked by 1 person
I’m sorry to hear you have this. Our family friend got this, as well. It is so diificult to experience a medical condition, but — even worse — to be able to find the proper care. How can anyone ever improve if medicine is fixed at a point in time, prior to cure, and only evidence-based treatments/therapies are allowed? Thanks for sharing.
LikeLiked by 1 person
Hi Randy! Thank you for stopping by! I’m so sorry about your friend. Is he/she making any progress in recovery? It is very difficult to understand the decades of delay in the understanding, research, and treatment of this complex disease. My own little very little part is to try to speak up about my own experience. Thanks again for coming by and connecting! I hope your friend is making strides.
LikeLike
Unfortunately, elderly age has been the cause, in the end, for his downward demise. I’m sure the factors of his Lyme disease were contributory. The effects were outwardly physical. He walked with a cane and had some cognitive dysfunction. He’d lost a wife to early cancer. He was a wonderful lifetime
volunteer for many causes. We sortof lost touch with him in later years, but for good cause: he was so busy and wrapped up in his new life with a new love, who kept him very active and involved with her side of family and life. A nice conclusion that he found love again and visibly seemed to do better because of this relationship. I can’t tell you more!
LikeLiked by 1 person
Wow, good for him! I’m glad he was able to have more love in his life.
LikeLike