My husband has lymes and he has all of the same symptoms as you, I really think you have it. When you take the antibiotics you get sick because the antibiotics are killing off the bacteria in your body, you need to just keep taking them..I know it is awful for you. I am so sorry. Try and find a Lyme literate doctor. Also...you can have it and it will not show up in a blood test.
I do hope it's not Lyme. De-stressing is a really good idea. Hang in there. You're welcome to keep us posted.
We wish you the best. Remember, we're here if we can help. Take care --
Thanks for the info.
I just keep thinking how unlikely lyme is after the negative test AND the fact that I don't remember any bites and never had a rash. But I do have a major family history of mental illness, mostly depression and anxiety. I will definitely look into your resources but for now I'm trying to put health stuff out of my mind. Any physical illness seems unlikely because I'll have like 2 days to a week of feeling good, then have a bad week and usually the symptoms get better when I stop worrying about them.
Here are some resources I hope you'll have the energy to look at.
This is an article from Brian Fallon, a Lyme researcher at Columbia University. It is a bit overwhelming, but try scrolling down to the section titled
Psychiatric Manifestations.
http://www2.lymenet.org/85256613000317b5/1bbeaa0c4dbd0d058525670a00093a6b/87e8dfed931381b7852567c70012001f
Here is a brochure with an overview intended for psychiatrists. Perhaps you could show this to your doctor: It gives a doctors overview of the variety of systems Lyme can affect, along with the neuropsychiatric symptoms.
http://www.ilads.org/lyme_disease/Psychiatric_Brochure_08_08.pdf
The combination of Bartonella and Lyme can cause more comprehensive neuro and GI symptoms, as well as anxiety. I encourage you to ask for Bartonella testing, too. My doc had never even heard of it. I had to spell it for her. The bacteria is called bartonella henselae, and it was previously known as cat scratch disease. It was erroneously thought to be mild and self resolving. Sometimes it is, but when it comes along with Lyme, it can be quite severe.
Definitely check back in if you don't do better. The sad problem of Lyme Disease is that it does cause a wide variety of symptoms which confuse doctors. They don't even know what an incredible variety of symptoms Lyme can cause. They are taught a bulls eye rash, sore/swollen joints, muscle pain, and headaches.
And a whole lotta Lyme patients have been 'diagnosed' with severe anxiety disorder. Most doctors are not trained in how to recognize and diagnose psychiatric disorders. Unless this doctor is a psychiatrist, he has no business giving out psychiatric diagnoses. Anxiety and panic attacks are documented symptoms of Lyme Disease. They're called neuropsychiatric symptoms. Even the American Psychiatric Association knows about them. Anti-anxiety meds may or may not help, but they will not resolve the problem if it's Lyme.
I know the idea that most doctors are wrong about Lyme is a big hurdle to get over. Even bigger is the idea of the cost and hassle of getting to an LLMD. Believe me, I know. But I can also say it's the best decision I ever made in my life. I can't comprehend where I'd be if I hadn't as I was in severe pain with lots of cognitive problems and massive GI dysfunction.
I did an inventory yesterday of the abdominal organs affected by my Lyme, Bartonella, and Babesia: stomach, spleen, gallbladder, liver, pancreas, kidneys, adrenals, and intestines. I also had ovarian cysts and horrible monthly cycles from the wild hormone swings it triggered by messing with the hormone control center in my brain. I don't think it missed anything.
Not one of my dozen doctors was convinced I had Lyme. In the hospital, where I went for severe pain, I was told rather rudely that I none of them thought I had Lyme. The infectious disease doc wouldn't even come talk to me. The GI doc ignored my extensive GI symptoms and didn't even suggest a follow up. He said he didn't know anything about Lyme, but that doesn't explain why he ignored my numerous symptoms.
I strongly encourage you to go see a LLMD. I know it sounds too hard and possibly a waste of time and money, but it could very well save your life. You are way too young to get disabled by Lyme, if you do indeed have it. Your doctor is wrong. Your symptoms are not incredibly rare. I see them all the time on this message board and others. Your doctor just hasn't seen them before. The reality is that extreme anxiety to the point of causing all the symptoms you describe is extremely rare. Lyme Disease could easily be causing 200,000-300,000 cases a year. While many are caught early, late stage Lyme is hardly rare.
Please don't give up yet! In the meantime, eat really healthy and don't take any steroids (prednisone, et.al.). If you do have Lyme, steroids makes them much worse.
Just thought I would update. I had a couple rough weeks with some days of feeling better. I feel decent now. I am starting to believe my symptoms might be from severe anxiety disorder. I went to a doctor last week who said there are really no illnesses that cause the pattern and variety of symptoms I've had, and any illness that possibly could would be incredibly rare in a 22-year-old, like unheard of. I think it would be extremely unlikely for me to have lyme disease but if the anxiety meds I started on do not start helping the symptoms I will definitely look back into it.
I have also had the problem of getting light headed and dizzy when I need to eat. For months, that's what I felt instead of hunger. I found this on someone's detailed list of Lyme symptoms once, and I've heard of many others who have described it. One explanation was that the communication between the GI tract and the brain was compromised.
I encourage you to google "Bell's Palsy of the Gut" and read this article by a Lyme aware gastrointestinal doctor. It explained so much about what I was experiencing. At times I had partial paralysis of my gut and wasn't able to control my stomach acid. Sometimes I had too much and had heartburn. Sometimes I had too little and my stomach hurt because the food was just sitting there for hours. (If you have too little, don't take antacids. It makes it worse.)
I had chronic stomach pain for about a year. It finally faded to what I'd call mild tenderness, and then I started treatment for Babesia. Stomach pain has returned again, and I must say I didn't miss it. I am also back to having dizzy spells and realizing I need to eat. This is most likely because 2 of my 3 meds can cause stomach pain and I probably have bacteria overgrowth. I'm on a hopefully short hiatus from meds and my system is starting to calm down.
I also had the alcohol sensitivity you describe, although I noticed it with as little as 3 sips of wine on an empty stomach. I felt drunk on a half glass. This was before I had any idea what I had, but I stopped drinking that day. I later had a swollen and painful liver, so I've wondered if having a stressed out liver causes the alcohol sensitivity. I am still not drinking a year and a half later. I'm just not well enough yet.
Have you seen the Burrascano checklist of symptoms? It's in his Advanced Tips document on the ilads website under Treatment Guidelines. It's about 8 pages down in the document. I was amazed when I found it, as I had symptoms I'd never connected to each other, such as light sensitivity, hormone imbalances, tinnitues, floaters, and a few others.
I encourage you to travel to an LLMD. I know it seems like a big hurdle to get over, as you shouldn't have to do this. But it is what it is, and you want to get well. If you do indeed have Lyme, the sooner you can conquer it, the better. I have read that repeated insufficient rounds of antibiotics makes it more difficult to cure later. The easy-to-kill bugs are gone, and the tough survivors are left.
Your worst case scenario is an LLMD says s/he doesn't think you have Lyme. In this case, you can at least cross it off the list and move on to other possibilities. There are at least 100 conditions that have symptoms that overlap with Lyme symptoms. The ones I've most recently learned about are hemochromatosis and Brucellosis. I even learned about another one today called Hughes Syndrome, or "sticky blood syndrome".
Have you had a Western Blot test at IGeneX yet?
Thanks guys. I'm done with the antibiotics now, have felt a little better in the last couple days. I have another reason to suspect lyme now... I've heard about people with lyme having reactions to alcohol. Tonight I had one glass of wine (first alcohol I've had in over a year) and it instantly made me lightheaded and tired. I thought it might be the reactive hypoglycemia but I was eating while I drank it.
There are limits to reasonable Herxing .... and like mojo did, when it's really bad beyond what seems reasonable, then call your doc.
The doc might tell you to adjust your dosage, or change meds, but that's not something you should do yourself.
If your doc says you're good to go with the level of misery you are reporting, then ask at what point you should call back if it gets worse, as in: "What symptoms should I watch out for as the point that I should call you or go to an emergency room?" That way you have a measure of what is too much.
Sometimes the information sheets that come with the meds will say at what point to call the doc, but those are not written specific to a particular person or particular illness or combination of prescriptions, so trust yourself, and don't be afraid to call the doc. That's what he/she is there for, and pretty soon you'll figure out what is over the top.
I know how scary that can be, and docs are sometimes not good at taking into account how tough a patient can before calling. Everybody's different.
Yes, herxing can cause stomach pain. Cephalexen is in the same category as Rocephin as stargazer mentioned above and that is a Lyme antibiotic. I was on it by IV when I went into the hospital.
Not to scare you but the first time I herxed, I thought I was dying. Not everyone feels it as badly. I called my nurse friend who has Lyme and she assured me it was a good thing.
Can herxing cause stomach pain? Yesterday my stomach pain felt a lot like hunger. For a couple days I was taking it without any problems but I think it really bothered me yesterday. I thought only certain antibiotics would treat lyme, I didn't think cephalexin and/or Bactrim would.
You are probably herxing to the cephalexen. Herxing is actually a good thing because you are having a die off, although you feel lousy. I am from Northern Va and I am not sure if there is an LLMD in West Va but there is in Fairfax, Va. That may be a long drive for you but well worth it to get cured. If you are interested in getting the name just PM me.
Take care
To find an LLMD, suggest you email to
contact [at] ILADS [dot] org
and tell them where you are and how far you can travel. They can send you back names of LLMDs. ILADS is the main voluntary group for LLMDs and the email address above is a referral function to help people find LLMDs.
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Also, try google/searching for
LLMD west virginia
I just did and there were lots of interesting links.
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Best wishes --
I'm not sure. I'm afraid to. The Bactrim hasn't been too bad but the cephalexin I think is giving me horrible symptoms. I might have gastritis and the stomach pain has been really bad today.
I understand. Do you think you can talk your regular doctor into more antibiotics, preferably doxycycline?
Before I got to an LLMD, I talked my GP into giving me doxycycline which can be for skin problems ( I had Bartonella lesions). That started me herxing immediately.
The thing about LLMDs is there are none in my area and I'm not really feeling up to traveling...
Yes, it could cause that because I have that symptom almost daily. Sometimes I really need to eat something but most of the time I am dizzy or as I call it, "off balance" most of the day. If people saw me, they might think I am drunk. An LLMD would be able to assist you with that too.
Thank for the info. I looked up bartonella one time and had many of the symptoms.
Thankfully that rib pain was short-lived for me. During that acute infection my ribs and back were extremely sore but it only lasted a little over a week.
The main symptom that is still confusing me is the fact that I need to eat all the time or I get really lightheaded, it's like reactive hypoglycemia but my blood sugar stays perfect.Is there any way lyme could cause this?
I am a bit late in this conversation, but I just thought I'd add my part. I have also had all the symptoms you describe. I have read papers from LLMDs that describe GI symptoms as a patient's primary and earliest symptoms. While it's not typical, it does happen. I developed lots of neuro symptoms to go along with my GI symptoms, which suggested a diagnosis of Bartonella along with Lyme.
Bartonella is also known to make Lyme GI issues worse. I tested positive for it, but many people test false negative.
What makes me lean towards Lyme for you is that you describe an earlier viral-like illness with chest/rib inflammation. Rib pain and chest wall pain are also on the list of Lyme symptoms. There is lots of connective tissue in these locations and Lyme loves connective tissue.
I have had chronic and stubborn rib pain for 17 months now. It is probabaly my last remaining Lyme symptoms besides fatigue. Just before I was diagnosed, my rib pain was severe. It got so bad, I couldn't be touched and I couldn't stand the pressure of a car seat belt. Now, I am just a bit sore in the lower front ribs.
I encourage you to find a good LLMD, a Lyme Literate Doctor. While some of your symptoms might fade or go away, others will just pop up. It seems to move through the body in some people. Waxing and waning symptoms are yet another indicator of Lyme. The sooner you find out, the sooner you can deal with it if you have it.
Keep us posted!
I was bit over 20 years ago, I felt bad for many years, had a few ok years and then it came out really badly 2 years ago. So I guess it depends when the bite happened and of course many people don't even know they were bit.
Hi Lindsay,
If your ANA test was negative, you can rule out Addisons (and any other autoimmune illness at all). So that's good.
The usualy tendency is to gain weight with low cortisol and lose weight with high cortisol, but it can be the opposite as many factors influence weight gain or loss, so it is no real clue about your cortisol level.
It's good that your BP is normal. Some rare cases with low cortisol do have normal or high BP, as that is also multi-factorial and not only controlled by cortisol.
But overall I think this is also making a low cortisol level look pretty unlikely.
My blood pressure is about like yours, usually 110/70. I don't remember what it did when I had Lyme, because I felt so lousy all over it was hard to tell what was hurting. All sort of blends together, huh. (Salt doesn't affect my blood pressure ... some people are not sensitive to it.)
I think I mentioned somewhere that my thyroid function got low when I was really sick, but then as the meds kicked in, it turned around and I was fine again. Everybody's a bit different, part of the mystery of Lyme that soooo confuses the docs.
Lyme symptoms often come and go seasonally, and also depending on what co-infections you might have. Good days, bad days, so-so days. Not at all unusual. Some people have Lyme for years and are able to just roll with the symptoms, while others get hit really hard, and yet others just feel low-level out of sorts the whole time --- depends partly on what co-infections and also on how your own immune system reacts to the infection(s).
No wonder nonLLMDs are confused, eh? The only consistent thing about Lyme sometimes seems to be ... inconsistency. It's natural to want to figure out the patterns and how to beat them, but Lyme dances to its own little tune.
If I had lyme would it be getting progressively worse? I was feeling the worst over the summer, then a little better in the fall/early winter, then a little worse this month.