Me, again! Sorry, I pose so many questions, but with so many symptoms it is impossible ( even with 2 hr appts) to cover everything during a dr visit.
Update to cover previous posts: I have a neuro opthamologist appt tomorrow. Appt with vasculitis clinic is being set up (though, I don't propose anything will come of it). LLMD is calling me back regarding the addition of LDN to my daily pile of pills and for permission to step up doxy to at least 200 a day. I am also still pondering getting an opinion from another LLMD. Made an appt with dermatologist regarding ACA possibility from "back surgery" post.
Today's question is about my chronic low blood pressure. It gets so low that it usually sets off the bells and whistles of the expensive Bp machines and when a nurse is manually taking it, it's so low that they take it several times to be sure they've done it right. Lately, it's been about in the 80/50-ish mark. Considering that I was a smoker and eat mainly a fatty/high sodium diet, it concerns me, as those things should have me in a higher range. I get very dizzy and black out nearly every time I stand. The drs solution was "get up slower", but that doesn't make a difference. I believe a lot of my dizziness, fatigue, shakiness, weakness, and heart skipping beats issues to be due to the low blood pressure, but doctors seem only concerned with high Bp values and have no recommendations for me. Does anyone know if Lyme affects Bp or does anyone else suffer from low Bp and have a recommendation? I think low Bp should be taken more seriously if symptoms are bothersome, so I'm frustrated that drs aren't investigating.
Thanks, in advance!
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 .
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!!
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 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???
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 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;-(
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..
Apparently Gatorade is very bad for you because of its sugar content. I get yelled at for drinking it all the time. Ha! I have really low blood pressure too so I tend to drink it for the sodium content. I am already on IV fluids for cripes sake, you would think they could spare me a little Gatorade...grin.
Also, iced tea isn't good for you either. We can't have any fun. For someone in the south, like myself, that's like saying I can't drink water! Ah well...such is Lyme life.
Forget the V8 too...tomatoes are bad for you too. Guess you had better consider a juicer like Rico and hit the produce aisle soon. Heehee. I am going back to my clandestine Gatorade consumption and my stupid IV...
Interesting about licorice tea---- I was about to 'caution' people about drinking licorice tea that ISN'T deglycyrrhized, then realized this topic is about increasing BP. Duh.
But I'll still issue a 'modified' warning since regular licorice (not DGL) can also mess up your potassium levels. I had a close friend who wound up in the hospital because she sipped licorice tea at work. Probably too much 'sipping'.
But it may be hard to find regular licorice anymore----
Personally, I wouldn't worry about the sugar content of Gatorade unless overweight is a problem for you or you are diabetic. Sugar itself is not bad, it's just that it's in so many products these days. Gatorade has useful electrolytes etc. You might ask your doc if it's okay for you in particular if you're concerned.
Similarly, the caffeine in iced tea is not 'bad' -- unless you take so much it interferes with sleep. Caffeine is a stimulant, but less so in tea than coffee.
I don't drink V8, don't like the taste of it, but if you are not getting vegetables otherwise, then why not drink it. I don't know on what basis the comment was made that 'tomatoes are bad for you' -- they are in the nightshade family, but are not poisonous.
We would all like to make all our meals from fresh produce every day, but time, energy and money are considerations as well. Do what you can reasonably do. I take vitamins and supplements every day, for example.
Try not to stress -- I think you're doing fine. >hug!<
Totally, agree! Though, fresh produce is obviously best choice, it's not completely feasible for everyday life. I will juice and see if I can freeze some, too, but the V8 can't hurt. I guess, a Gatorade a day would make a good addition to an all water fluid intake, too. As long as I'm cutting out sweet teas and sodas, the sugar in the Gatorade would be small in comparison. Licorice tea sounds interesting, but not sure it would suit my taste buds;)
"Sugar in all its forms (except stevia) is a real problem when you have Lyme and are on antibiotics for months. With a weakened immune system and being on antibiotics...eating sugar is a recipe for disaster.
"Yeast overgrowth is a real problem for people taking long-term antibiotics, and yeast feeds on sugar. That's why many people (who have good LLMDs [Lyme-literate dotors) are on some sort of yeast control diet.
I grabbed the info from a website, however I don't eat sugar or fake sugar as it has been noted by both llmds I have talked to to be best to be avoided completely if possible.
Good reminder! And it brings about another question I have:
How do you know if you have a yeast problem? I mean, I'm taking my probiotic daily, but how would I know if I'm not taking enough and maybe have a candida problem???
I got a systemic fungal infection from a particular kind of probiotic my LLMD insisted on, but there seems to be a genetic susceptibility in my family to fungal infections, so it doesn't affect everyone that way.
The advantage to the type my LLMD recommended (brand name Florastor; generic name Saccharomyces boulardii, or S. boulardii for short) is that antibiotics don't wipe it out like 'regular' probiotics like acidophilus. The reason is that Florastor is yeast-based, while acidophilus is bacterial. Antibiotics kill the bacterial probiotics, but do not affect the yeast-based ones. The acidophilus can be used, but it has to be at least 1-2 (?) hours before taking the antibiotics, so the antibiotics don't wipe out the bacterial probiotic.
(My problem was that I am yeast-sensitive, which is apparently rare, acc. to my LLMD. Just sayin'.)
My fungal infection was not vaginal, it was systemic and in my blood stream. The symptoms were a lot like Lyme (brain fog, fatigue), but I got very bloated, my eyes were red, my teeth felt loose, and I couldn't think straight. I went on high doses of Diflucan and it killed the yeast infection, and stripped all sugars out of my diet till the yeast was killed off ... so no fruit, no sugar at all. To be fair, my doc said he had 'never' seen that happen to anyone before, so this may well not apply to you. Simply fwiw.
I don't know that you can overdose on the regular, acidophilus probiotics, just get a good brand (preferably one that is refrigerated in the store and has an expiration date on it and has if possible a variety of bacterial strains rather than only one, so I read.)
After I was done with treating the massive yeast infection, I started taking supplements like one called YeastCleanse that is a variety of herbs that keep the yeast away. The label on the bottle lists:
Great suggestion for the YeastCleanse! I will look for it today as I needed to get a pill form of magnesium anyway. The Calm is just way too sweet for me to handle anymore. Thanks!
As far as the probiotics go, I take Metagenics "Ultraflora Balance" a 50/50 blend of Lactobacillus acidophilus and bifidobacterium lactis (15 billion live organisms). Do you think one of those a day is enough? Or should I bump up to 2 a day, since I'm on doxy 200, plaquenil 100, and LDN 1.5. LLMD didn't really give instructions:(
I have also read that sugar is bad news for a Lyme patient. I have noticed that when I give in to a sugar craving and eat more than just a little, I feel terrible later. I've some some articles from people friendly to good nutrition and natural remedies who say that sugar seems to suppress the immune system a bit. I don't know if there are any scientfic studies on that, though.
Sugar definitely feeds yeast, especially on an empty stomach. If you're on antibiotics, you definitely don't want to drink any sugared drinks. Eat watery fruit instead, such as melons in addition to drinking lots of water. Add some lemon juice to your water, as it reduces your body's acidity, which helps the immune system and antibiotics to work better.
Since you're looking to put on weight rather than lose weight, you don't want empty calories. You need nutrient and calorie dense foods to keep your weight up. You need plenty of protein, too. Eggs, legumes, nuts, and lean grilled meats are good sources. (Beef is not.)
Beef has some nutritional positives, and the occasional grass-fed, hormone free beef probably won't hurt anyone. But since most beef is corn fed with antibiotics, resulting in a high fat content, and since it's hard to digest, it can be counterproductive for someone who's chronically ill.
For the year my Lyme was its worst, I found that beef would just park itself in my gut. It took waaayyyy too long to digest and it was unpleasant. I only did that once or twice. Now that my gut is much better, I splurge every few months and have a lean, grilled filet, usually when I know I need an iron boost. I also chase it down with a couple papaya enzyme tablets which definitely help in digestion.
Frequent, high-fat beef consumption is just hard on a body and not helpful for a Lyme sufferer.
Funny, I actually crave nuts and sunflower seeds;). I crave sugar too though and you're right I feel terrible right after eating it! I just went grocery shopping bc I have decided on a low gluten, low cow's milk, low sugar (notice I said low, free is a stretch as a busy mother of 4 young ones). Hopefully that will make some sort of difference.
I also just bought whey protein to see if that helps with the weight gain.
Thanks for the advice!!!
Better diets should be possible now that we are back in farmer's market seasons;)
I am the one who commented about the sugar in Gatorade, the tea and the tomatoes being "bad for you." Although I injected some light humor into that post because I am always in trouble for my consumption of Gatorade....let me clarify my statement, the sugar is bad because according to my LLMD the Lyme bugs feed on the sugar ~ these are her exact words not mine. I have read that some people have terrible reactions to the smallest amounts of sugar like GI upset, fatigue, general malaise and other people tolerate it just fine.
The tea is bad not because of the caffeine but because it is a diuretic. All teas, whether they are caffeinated or decaffeinated, sweetened or unsweetened, all act as diuretics therefore they cause you to lose fluids. If someone has dehydration issues or only drinks tea all day long and never consumes any water, then they may have a problem (in the words of a well trusted nephrologist, the kidneys like water ~ as long as they are normal functioning kidneys).
The tomatoes are nightshades (like you mentioned) which contribute to inflammation and can cause joint swelling/discomfort. They can also cause stomach irritation and acidity. Once again, not all people are bothered by tomatoes but if you suffer from joint swelling already, it may be a consideration.
Hope that clarifies my post. In general, what I was saying is that we are all doing the best that we can and even though I am being yelled at for drinking my Gatorade, I still feel that it is helping to maintain my blood pressure (which is very low from POTS~postural orthostatic tachycardia syndrome) so if the Lyme is eating a little bit of sugar I have to take that chance so I do not pass out on the floor whenever I stand up.
I think when it comes to our diets, we are trying to juggle a gluten free, dairy free, sugar free diet and we cannot always be perfect. Do the best that you can within reason and if you occasionally want a "treat" of something that is not going to make you ridiculously ill then by all means, go ahead and have it! We are already suffering enough. Live a little and enjoy your life too...within reason of course. :) Then go back on your diet. This is just my opinion.
There are many people who are adversely affected by what they eat (vis a vis Lyme). I'm not denying that.
On the other hand there are many who are not. I tried every diet known and adhered to them religiously: no sugar, no nightshades, no gluten, no 'yeast' foods, no lactose, vegetarian (which was one I found very easy to do but it didn't help my symptoms), no caffeine on and on and on. Of course not all at once (grin) or I would have to had learned to exist on air and kale. Oh, and I love kale, so don't take that wrong.
The best I ever felt in the last couple of decades was when I found the abx that worked for me. Before and during those wonderful years I ate 'normally' and sensibly.
But if you find that, say, beef or sugar affects you adversely----- then it makes sense to quit them. My experience is not yours and vice versa. We're all different.
I did another BioScan today, which measures the levels of antioxidants in the blood. There are five zones, and the first time I was at the top of the orange zone (fourth worst). Next time, I moved up to the bottom of the yellow zone. Then, I backed off on juicing due to the gas it was giving me. Also, I've been eating a lot of frozen meals while I'm solo parenting for 2 weeks. And today, on my third scan, I'm down to the low end of the orange zone, less than half what it should be. Yikes!
It was a harsh wake up call on my eating. Even though I feel better overall than last appointment, my oxidative stress is most likely higher. Back to the juicing. I'm wondering what the BioScan machine costs. I'd like to check everyone in the family on a regular basis.
I'm happy about farmers' market season, too! It's definitely easier to get fresh organic produce.
Totally, agree with all of you in that it is an experiment process to find what foods are best to get rid of or add to your diet. Not one diet works for all.
Rico- sounds like a neat test. Was that self-ordered? Speaking of antioxidants I was just reading about glutathione and it is apparently the best antioxidant available (supplementwise). I know I've read others on here say that they are taking it. Were you one of them? I just bought a sublingual version and I'm excited to try it!
Also, in regards to magnesium and Calm being too sweet, I also bought Life-flo magnesium oil. Thought that tansdermal magnesium might work better for me. Any thoughts?
I do not eat sugar in any form even fruit for periods of time to help starve lyme and yeast. I also believe strongly in adding as much organic greens to help your body repair itself. I agree with the farmers market season. Its the best..
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