I started very low dose Armour Thyroid two days ago (15 mg - 1/4 grain). I'm supposed to take this for 7 days, then bump to 30 mg for 7 days, then go to 45 mg.
My TSH was 3.98 before. Free T4 = 0.9. Free T3 wasn't done by LLMD.
These last two days I've had horrendous headaches. I just don't feel well. I'm also on two tablets of Malarone daily (cut back from 4).
I see in the Armour Rx handout sheet headaches are a side effect if intolerant. I also have felt very, very nervous/on edge.
1/4 grain is nothing, right?
I'm really losing hope with all these LLMDs and treatment now. Almost ready to call it quits. I'm embarrassed telling family/friends/co-workers how little progress I've made over 3 years. I used to think those who didn't believe in LLMDs may be fools, but I'm re-considering that maybe I'm just a fool.
I've read everything on this site and just confuse myself more and more. Contradictions everywhere here. I don't know who, what, or which theory to believe.
I saw another PCP today who looked at me funny when he saw my Mycoplasma Pneumonia and Babesia diagnosis. He talked to me like i was stupid and said Myco is nothing. Said having antibodies to Babesia for IgG(had to ask me what it was and how to spell it) means nothing and doesn't indicate an infection is active.
He laughed at all my problems basically and I was having pain/pressure under my left rib. I asked what it could be. He said it's called a rib and they get sore sometimes.
There are just a few here who never improve and I'm in that bucket. Tired of it. I see one of the best LLMD's offices in the country and don't even have lots of faith there anymore.
There is only one person on the face of this Earth who can ever get me better.....me. No doctor is smart enough or has the time to comprehend the big picture. I need someone to dedicate my case as if they were the sick person and that's not something that will ever happen in medicine. I'm a number and a dollar sign to all docs. I forget that often but am reminded often too.
Posted by BoxerMom (Member # 25251) on :
I'm glad you're sharing your frustrations here, because I know that's hard (impossible!) to do with the rest of the world. We understand.
I'm sorry you're suffering. Most of us lost faith in the medical system long ago.
Your left rib pain is probably an enlarged spleen. Your doctor should have palpated your spleen or sent you for an ultrasound instead of insulting and dismissing you. I'm so sorry.
Babesia causes enlarged spleens and all of your signs have pointed to Babesia as your worst infection for some time. I hope you will continue pursuing treatment in some capacity.
If you aren't completely broke yet (I know I am!), can you take a short vacation to get away from doctors and treatment decisions? You deserve some time to just relax and get this off your mind.
It will certainly be waiting for you when you return!
BoxerMom
Posted by sbh93 (Member # 30429) on :
I wish I had answers for you, but I'm new to lyme and mining this website as well. I can sympathize with the feeling overwhelmed by information, especially when it contradicts.
I don't know your history so please forgive me for asking, but have you ever had a CT scan or ultrasound of the abdomen? I have pain in the same location and do have organ enlargement from cysts. If you haven't had a scan of the area, may be worth a look.
Hope you feel better soon...
Posted by seekhelp (Member # 15067) on :
BoxerMom, you are right I have no one to vent to. I guess it's tough not to let some steam off sometimes. I'm in no shape to go on a vacation. Can't walk anywhere, feel bad most of the time, shaky, head pressure, yawning hundreds of times a day, off-balance. Vacations are nothing more than a dream for me at this point.
He did palpatate my spleen area, but I don't know if I trust his opinion much. He asked if I had scans done in the past. Basically, once he saw my summary of tests done, he asked me if I considered if my illness is stress-related and maybe try Xanax. BUT HE WOULDN'T EVEN Rx ANY. OMG.
It's been many months since I had an ultrasound of my abdomen (before Babesia Tx). He seemed happy as long as some work-ups were done in the last FIVE YEARS. OMG.
Sbh93, I had a cyst on my liver, but the docs say it's harmless. No change in size over several scans. I hope you feel better soon.
I keep thinking Babesia, but the truth is my treatment is still a joke (2 Malarone tablets). I can't handle the big guns. It's clear I will never improve. Especially since Ataquovone dosing is body-weight based and I'm very large. I'm getting child dosing when the opposite is probably needed for therapeutic effects. Also, my LLMD stopped using Abx and there's no Macrolide Abx to use with Malarone.
I'm screwed.
Posted by Wolfed Out (Member # 23727) on :
Seek,
Your post was touching -- really. I instantly felt connected with the deep frustration that comes with trying to get answers.
I feel like I prepare book reports for every visit I have with a doctor. I come there prepared, expected to be treated fairly and discuss the issues that are most pertinent to my situation.
Yet, I always find that even though I'm recognized as having a chronic illness, I'm given the same treatment as others; even though my symptoms may warrant a different approach. I even find this at my LLMDs office.
But, being empathetic, I just see people who are struggling to understand this as much as we are. Going with ill-researched approaches to treatment in a medical community that refuses to acknowledge the severity of our problems.
It's most definitely a struggle, and we are fighting for our lives. Of course, by the law of preservation, we won't give up hope either. We aren't supposed to. Because good things don't come easy.
Regarding your Armour replacement, I experienced the same symptoms. I felt very much HYPERthyroid while taking the supplement, and quit after 3 days.
I didn't give up on this theory though, and continued to dive deeper into the endocrine system. The thyroid is controlled by glands that have a greater impact on our overall well being. The HPA and Thymus are instrumental, as I'm learning in my research.
In fact, what I've discovered most recently is that all the symptoms we attribute to Babesia strike a mirror image of imbalanced hormones. Who's to say where the malfunction is? We need extensive testing. Thyroid, Adrenals, Pituitary, Hypothalamus, Thymus...what else am I missing?
Just think. There are people out there diagnosed with hormonal conditions that could very well be the cause of a bacterial infection. These people are given treatments, and many get better, without ever knowing why their hormones are out of balance.
Sometimes, I feel like having too much information about my disease is what holds me back from having a doctor actually run a gamut of testing, and give me another treatment to assist in my recovery. I tell them I have Lyme, and they want to do nothing more than prescribe antibiotics...maybe that's not enough.
I'm rambling now. Sorry. Lastly, I feel like we're getting closer to getting some answers now. Keep faith, and keep looking into the endocrine system for your answers.
I've said it before and I'll say it again, if there was one thing I've learned through all of this, it is to always trust your instinct and keep pushing for the result.
Posted by sammy (Member # 13952) on :
You may have started on a dose too high for your body to handle. You could try cutting the tablet in half and only take half. Or cut it in half and take part in the AM and part in the afternoon.
You may also need to increase the dose more slowly, stay at one for a couple weeks until you get used to it before moving up.
If you still have the hyper symptoms of headache and nervousness at the lesser dose then you will need to notify your doc. I know that's the last thing you want to do but you have to because you need to feel better not worse.
Also, some people cannot tolerate the natural T3/T4 combos and do better with the synthetic T4 (Synthroid).
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