Sorry for all your concerns. I belong to several Lyme support groups, on my other group I would say 90% of the members including myself are dizzy and suffer from Neurocardiogenic syncope.
Mine was proven in the hospital . I would lay down, the nurse would take my blood pressure it would be normal. I stood up and my blood pressure dropped dangerously low, about 30 points less which caused me to pass out or become very dizzy in less than a minute. Not sure if yours is like that but I would say Lyme does have an effect on BP because of all the people I know that have that. In my non medical opinion.
Another problem that happened, after 10 years of a constant low grade fever, my body temperature now is constantly very low at 96.5. A fever for me is 98.6.
My cardiologist gave me medicine to normalize the blood pressure. It helped a lot .
If your doctor's solution for your low BP was to 'get up slower' I would think it might be time to find another doctor.
That's what I would do. It may not be what you want to do.
Here is a link:
Mayo seems to think LBP should be investigated.
Lyme does indeed affect so many bodily systems in such strange ways that it's not surprising the docs are confused .... docs seem to look at each symptom in isolation from all the others, especially when they don't understand how pervasive Lyme is in the body.
I just searched online for -- low blood pressure lyme disease -- and got tons of hits, so this isn't rare or unusual.
This is an example of why having one main Lyme doc is important, because s/he sees the whole picture, instead of focussing on one or two body systems as so many docs tend to do these days.
Not all Lyme docs are equally savvy, because knowledge and understanding of Lyme is still developing in the medical field, and some docs are not as up to date as others.
I just did a search for
lyme disease "washington dc"
and got lots of interesting links and hits. You might want to gently shop around for a new doc, but no need to tell your current doc you are doing so.
If you don't already have copies of ALL your Lyme-era test results from the current doc and any past docs, now is the time to start collecting them so you can take them to a new doc, either soon or maybe sometime later. Those test results can be very useful to a doc who knows how to read them. Once I found my LLMD, it was wonderful to have one-stop doctoring instead of juggling appointments with an endocrinologist, an internist, blah blah blah.
It's like the old story of the elephant and the blind men: a doc who doesn't understand Lyme sees only the symptoms that s/he has a context for, but can't see the whole picture.
mogogal- Once again, your ability to relate to me is very comforting and I appreciate it. I'm so glad that your doctor was able to medicate you properly and it give me hope:)
cave- I'll take your word for it and push my docs to treat me properly;)
jackie- I've looked into Dr. J in DC (I think he did a pretty famous, yet scary (I was told not to view it) video about Lyme. sorry, can't remember the name of it now, but I'm sure you've heard of it) more and I really like his more aggressive protocol. Oddly, I feel more comfortable with an all abx treatment plan than my docs herbal, then abx approach. As it will happen though, I will have done the herbal, low dose doxy starter treatment by the time I get in with him anyway;) Funny how it works out, isn't it! I do hope he lets me stay on the Plaquenil, as I personally have high hopes for it and would be bummed about having to stop.
BTW- LLMD gave me permission to start LDN tonight! Wish me luck!!!!
I think you are holding up really well, and handling all this stuff well too.
The very hardest thing of all is accepting the mess the medical community is in about Lyme etc. Once that comes into focus, and once we know we have to take charge and think critically about what we are being told, it actually begins to feel good -- for me it was very (trite word alert-->) empowering, but it was true. I felt like I had a grip at last and knew what and how to fight back.
You sound like you are 'there' too -- and that is terrific. You go, girl!!
I had chronic low BP like this (or often even lower) for years and years.
I eventually found out it is caused by abnormaly low cortisol levels, which you end up with after having a Lyme infection for a long time (in most cases, 3 to 5 years but sometimes less if you have other health problems or stresses going on).
You may already have found out that the only thing conventional doctors can offer is to take cortisone - artificial cortisol - which is very harmful to people with lyme as it suppresses the immune system. I eventually discovered that there's a nutritional programme you can follow that sorted it out for me completely - low BP is now a thing of the past for me! You have to be prerared to take a lot of vitamin and mineral supplements and it did take about 3 months before I got results, but it was pretty miraculous.
Getting my Cortisol levels back p to normal sorted out many other symptoms I had, which has improved the way I feel considerably.
I wrote a blog post that summarises the book
But I would recommend buying the book as it explains in a lot more detail.
The book is called Adrenal fatigue by James Wilson.
There is a term called POTS which sounds similar to what you describe with low blood pressure and dizziness, especially on standing. People with POTS often faint when they stand up. This is dangerous and it could results in a nasty head injury.
POTS seems pretty common with Lyme. I don't know if there's a whole lot you can do with it other than treating the Lyme, but it's worth researching. A good LLMD should know how to help.
I had the opposite problem of high BP and tachycardia. Mine was treated fairly well with a beta blocker, which I'm still on. Good healthy food is really important for getting your body back in balance and arming your immune system for the long fight ahead. I truly feel worse when I eat something I shouldn't. I recently got a juicer and it's helping me up my intake of veggies. I like it a lot more than I thought I would. I always hated V8, but as long as I don't add tomatoes to my juice, I've found I like it with some fruit added in for sweetness.
Youvegot... thanks for the mention of adrenal fatigue. I think I've had adrenal fatigue for a while. I finally did a 24 hour saliva test to check. Wish I'd done this over a year ago. My doc's ND said they give very small doses of Cortef for low cortisol. It's not enough to suppress the immune system, but it is enough to help a patient feel better. I'm still struggling with morning sluggishness, and then I perk up in the evenings. I even have moments of clarity at night where I feel for a few minutes that I don't have any brain fog at all. Gives me glimpses of wellness!!
About the feeling drowsy until evening .... I've just figured out that my sluggishness/drowsiness until midafternoon was from the morning's installment of magnesium. Who knew.
I was taking some in the morning and some in the evening, so down now to just evening until I figure out a better way. fwiw.
VERY interesting. Maybe it's too relaxing. Without it my chest gets tight and I'm working too hard to breath. I am improving, though, so hopefully a little longer and I can try take it only in the evening.
I'm a lightweight when it comes to anything .... can't even drink a beer because it puts me under the table. So not surprising me that the Mg plays tricks too. :)
I just did the saliva adrenal test, too. However, I was having a "good day" when I took it, so I'm frustrated the results won't accurately reflect my usual fatigue. Frustrating! I don't know if it's going to be a bad day until around mid morning and I had already started the testing. We'll see! Like you all state mornings are sluggish and then around noon to mid afternoon when I can't avoid a nap. The fatigue gets so bad I actually am curled up in the fetal position with nausea:(. Then, like you, at night I perk up with a few hours of a very clear head. I almost feel normal in that moment.
Update: neuro opthamologist appt was a wash. He said I don't have Lyme bc I only had one band (#23, and still waiting on Igenex results). He said I have a rare autoimmune disease and need to see another rheumatologist. But this time instead of getting upset, I rolled my eyes at him and nodded. I recognized his ignorance and didn't bother to protest. It doesn't matter anymore to me what the mainstream docs think. Though, not fully satisfied with my LLMD's non-aggressive protocol I think she is the most accurate doctor as she stated "even if Igenex testing comes back completely neg, which I don't think it will, and it is an autoimmune disease, your body just doesn't decide to destroy itself for no reason. There must be an underlying infection that sparked it and that is what we must treat." THIS has been my personal mantra since she spoke to me after the Hopkins suggestion of vasculitis. I trust this theory more than any other that has been proposed to me and I adore her for making me aware.
Also, my double vision was clarified to me by neuro opthamologist that it is actually "ghost vision"
Also, LDN worked wonders last night!!!! Hopkins doc called today to check on my pain and to ask if the morphine was more tolerable now. I told him that my ND ( whom Hopkins doc says "is not a real doctor") gave me LDN and for the first time in a year, I slept without pain last night and had no adverse side affects. He was shocked, saying "I've never heard of anyone taking that for pain. Huh? Well, I'm glad it worked." Seems other doctors could learn a lot about alternative treatments from ND's and LLMD's. quite a shame that they don't take them more seriously. So far everything dr. Bloem, holistic md/ ND, has said and done for me has been precisely beneficial. If you live in the DC area, I strongly recommend him!
You've- I have actually checked your blog posts out, maybe a couple of weeks ago;). They are wonderful! Thanks for reminding me, as I need to go back for a refresher. Knowledge goes in one eye and out the other!
Rico- thanks for the tip on the V8! It's always in my fridge, but I tend to reach for the ice tea instead. Will try to drink it more!
What do you guys think of Gatorade? Maybe that could help as well???
1 -- Hurrah for a good night's sleep!
2 -- The band (23) on which you are positive is 'specific' to Lyme -- meaning that NO other bug of any kind will cause that band to light up. A Lyme doc would likely look at that as pretty good proof.
3 -- We don't type out doc's names here, because they can then be harassed by the local and state medical boards and sometimes driven out of practice. That's why you see us refer to 'Dr J' or 'Dr A' in public. If someone needs to know who we are referring to specifically, it gets sent in a private message. Let's hope your reference passes into history without notice by the Lyme nonbelievers who want to cause trouble.
I thought it was just LLMD's whose names we had to keep private? He is actually an md who prefers natural/holistic methods. To be clear, he is NOT an LLMD. I found him through a thyroid website when I was looking for a doctor willing to treat my thyroid disorder with alternative treatment. He has also been referred to by another poster here on the Lyme board, so I just assumed that mentioning his name again was ok. If I did something wrong, I'm sorry. I'd seriously hate for him, of all people, to be bothered:(
No worries ... I guess I have just made it a rule for myself not to mention any docs' names, just to be on the safe side. :)
Like I said, no worries! You've got enough on your mind, and I think you're juggling it all really really well. Your explanation makes perfect sense. As long as the doc can't get bugged by the nonbelievers since he's not straying from the path, no harm done.
Sorry to have alarmed you. (Deep breath!) I think you're doing really really well with all that you are dealing with. >hug!<
When I reread my posts I realize how unclear it is to decipher which type of doctor (4 different ones in those comments) I was referring to. Ugg! Brain fog: the gift that keeps on giving. I will acquire your practice of no name for all docs from now on;). Best to err on the side of caution. Thanks, Jackie:)
I take ldn as well but LLmd prescribed it for other reasons not pain. Not sure it's doing much but I am not at 4 mg yet. What's your dose?
I saw another neuro and he told me no way do I have lyme it's simple to treat with anibiotucs so none of my symptoms are from lyme. As he knew i have taken doxy, minocycline etc....I also have band 23 41 and a few others. So I just stayed quiet and realized I through way my co-pay;-(
Sorry about the neuro appointment. :(
I learned the hard way that neurologists and infectious disease MDs are two of most hardcore 'Lyme deniers', so it's a learning process.
I'm hoping there are some quiet exceptions to that rule about them being deniers, but have come to doubt it. Specialist docs tend to fall in line with what their specialty groups (like the Infectious Disease Society of America), because it's a safe harbor for the docs, who can point to the group and say "But they are the experts, and these are their standards!" as a defense.
Consider yourself fortunate that 'all' it cost you was a co-pay and not years of misery. Hang on, and keep plowing ahead. It's worth it.
I just wanted to make sure you know, that LOW cortisol means you're in the lower end of the range, not that you are off the bottom of the range (which means you're dead, or soon will be).
In the morning your level is supposed to be right at the top of the range.
Anything below the top quartile will mean you fel sluggish till late afternoon, which is when your adrenals have EVENTUALLY caught up with making the cortisol you need first thing in the morning! This pattersn of tirednes and energy is typical in adrenal fatigue. The book I mentioned explains how it all works.
Like Jackie, I am a complete lightweight, so I just took 1.5 just before bed. It puts me out almost instantly. My mornings have been going pretty well, just joint pain and some sluggishness to deal with. But last night's crash was horrific! By 8 pm I was in tears from the joint pain. They felt feverish and were throbbing. My head and neck felt feverish as well, but I took the LDN and slept like a baby again. I will have to investigate what is up with the nighttime crash! That was horrible! Also, I don't know if it "felt" worse because I felt so good all morning and most of the day prior. I saw on one website where they warned of LDN inducing a herx, but I have no idea why.
Thanks for the advice! I'm really interested in learning my results and I'm pretty sure if it comes back normal, I'm going to do the saliva test again. This time I'll ask for extra cotton cylinders, just in case I have a "good day" again. (Which I hope I do;) )
"Amazingly, LDN can reduce inflammation and oxidative stress, modulate the immune system, and even inhibit cancer cell proliferation." So its claimed....
LDN is used for a vast majority of reasons. Be careful as you increase the dose. Do it slowly. It can have an opossite affect and you will get insomnia. Its terrible but short lived.
LDN has been studied or is undergoing clinical trials for pancreatic and head and neck cancers, Crohn’s disease, HIV/AIDS, neuroblastoma, melanoma, autism, Parkinson’s disease, lymphoma, multiple sclerosis and fibromyalgia lyme etc..