I have been through the ringer for the past three years with multiple symptoms and no answers. It basically started three years ago after my dh had been hospitalized for an unknown infection, although I have had muscle and joint pain for most of my life, since I was a young teen, I would say. (I will be 33 in October). It started with a constant headache and dizziness (which I have had on and off for the past few years as well). I was painting my son's room and my shoulder and neck started to ache and get tingly, but I guess that was probably from the constant up and down motion of rolling the paint and sanding drywall. Around Thanksgiving, I started getting zapping and twinges in my large muscles. Then the burning muscle pain started. I also had digestive issues, mainly diahrea with some constipation at the time. I had major brain fog and fatigue, I would fall asleep while reading a book at 7 pm! I had major insomnia, too. These seemed to go away for the most part in the spring, but then came back in the fall, but to a lesser extent. All bloodwork has been pretty well normal except for lymphocytopenia, slightly low SGOT, Low Vitamin D (19), slightly low iron, and midrange B12. I had one positive test for lyme, but only band 23 showed up, so I guess that was a negative on that. I have had 3 (I think) other lymes test and apparently they were all negative. I have dealt with neck, chest, breast, rib, back, hip, knee and foot pain as well as extremely tight muscles in my entire body. I also get a pain in the anterior neck, swollen glands under my jaw, and tooth pain from time to time. I have a history of TMJ as a teenager that was treated, but now is returning (I think because of clenching my muscles at night while I sleep). I have been tested for celiac, but that was negative, but I am cutting out gluten and most dairy to see if that helps with abdominal pain. I also have bloating and pain under my sternum. An URQ U/S revealed nothing and I am debating on having an endoscopy done to check for ulcers or reflux. I occasionally get heartburn, but don't have a constant cough or anything else that would suggest reflux. I gave up coffee as well. After I did go gluten free about a month ago, I did have a day or two where I was no bloated at all, but then I had to go back on gluten for the testing. I have had multiple rheum bloodwork that was all negative. Anxiety has been the worst of this, I feel like I am dying most of the time. Of course, this could have been the stress of my husband being hospitalized for an infection they never found the cause of. I also get odd bruising at times.
Sorry to keep rambling, this has been going on for so long that I am trying to remember everything. In June I went to a nutritionist who has a machine called the Asyra. It sends frequencies through the body to pick up on things that are out of balance. It picked up on Babesia, but could be active now or could be something from the past. I haven't asked my dr. about this because I am sure she thinks I am just crazy at this point. I am in Western PA, about 2 hours north of Pittsburgh. The nutritionist said that a dr. from Germany said that a muscle biopsy can bring lymes to life and then give you a positive. I just don't know where to go from here. I want to feel better and not hav people thinking it is all in my head. I am tired of spending money on tests and having them be normal when I feel like I am dying half the time. Before all this happened I exercised almost every day of the week. Like I said before, the symptoms come and go. If I can completely relax (which doesn't happen too often), I have no pain, but that is very few and far between. Please help me!
I also want to mention that I have had hairloss on and off since having my first son (I have three boys, ages almost 13, 10, and 8). I always thought it was due to my hormones, but thyroid testing has been normal. I have been losing my hair since April of this year and my hair is very thin and fine to begin with!
Your symptoms are similar to those that can come with Lyme disease and/or one of it's co-infections but since they can also be attributed to other diseases it would be hard to say.
If your tests weren't done at Igenex in CA then your tests were probably not the best available. Go to http://www.igenex.com/Website/ for information. I'm not an employee of Igenex, just someone who has Lyme and knows a lot of the ins and outs! :)
Another thought popped into my mind when you mentioned painting. Could you be bothered with MCS (multiple chemical sensitivity)?
That's something that isn't really connected with Lyme but for some reason a lot of us become sensitive to smells. It isn't really acknowledged by a lot of doctors. Can you still wear perfume, have scented candles burning in your home, be able to be in a tire shop, wash your clothes with a scented detergent? Those are just a few of the things that bother MCS people. I had it really bad but it stopped after long time antibiotic.
You could also go to http://www.ilads.org/ and start reading for more information.
It's awful when a person feels awful and can't get any help from most doctors. I'm sorry you're experiencing this.
You are asking good questions, and good for you for continuing to work on figuring it all out.
No one here is medically trained that I am aware of, but most if not all of us have been through some variation of what you are experiencing: feeling awful in strange ways for an extended time, and having no useful answers from the docs.
Most and maybe all of us have been through a journey that sounds similar to yours. Part of the confusion in the medical community is that there are several infections that often accompany Lyme disease, and Lyme and these co-infections show up differently in each person -- making diagnosis difficult. On top of that, Lyme is such a recently recognized infection (maybe 20 years now, which is quite new in the medical world) that it is still being figured out, the usual tests are not very accurate, and treatments vary depending on the doc.
Virtually all of us posting here have been through some variation on what you are experiencing. Here's my take, for what it's worth: your muscle and joint pain reaching back to your early years could be a longstanding Lyme infection that was simply undiagnosed and untreated (or could be something else, of course). A strong, young immune system can keep the infection suppressed for a very long time, but it can come out later in the presence of other stresses to the immune system from other disease or simply age or stress. The requirement that you see a tick, that it be attached for 'x' number of days, and that you get a round and spreading red rash at the bite site just are not true for everyone, but the docs have been taught that these signs are required to diagnose Lyme.
The reason these signs are required for diagnosis is that the first docs to study Lyme ~20 years ago were trying to be sure, for purity of the research data, that they were dealing ONLY with certain, absolute, slam-dunk cases of Lyme and not some other ailment.
Unfortunately, these very high standards for diagnosis miss many true cases of Lyme disease, because Lyme manifests differently in each person; the symptoms are confusing because the Lyme ticks (about half the time) carry other, separate infections with symptoms of their own that confuse the docs; and one of Lyme's other tricks is that it suppresses the immune system, so that the tests may well say 'negative' when in fact you can be infected with a nasty, full-blown case of Lyme.
It's possible that the muscle and joint pain you had since your early years was a case of Lyme that your youthful and hardy immune system held in check for a long time, and that the later stress of your husband's hospitalization and caring for a busy family (and possibly having anotherm unnoticed tick bite) finally overwhelmed your immune system's ability to keep the infection at a low level of misery. And boom -- you have a sudden explosion of bigger, worse symptoms.
The recent symptoms ("zapping and twinges in my large muscles", "burning muscle pain", "digestive issues", "major brain fog and fatigue", "major insomnia") can all be symptoms of Lyme and/or its possible co-infections.
Lyme symptoms often rise and fall with the seasons, which matches with your comment that your symptoms "seemed to go away for the most part in the spring, but then came back in the fall" -- but everyone is different, and some people get worse in spring or summer.
The blood test for Lyme ("I had one positive test for lyme, but only band 23 showed up, so I guess that was a negative on that") is particularly interesting, because ***no other infection but Lyme will cause band 23 to show positive***.
Why did the docs ignore it? Because the standards for diagnosing Lyme were established some years ago to ensure (for studies tracing how widespread Lyme was and where it might be spreading to), that the data were absolutely clean, and there could be no doubt for scientific reasons that test subjects had Lyme.
Unfortunately, those very high scientific research standards miss a lot of truly ill people, because Lyme suppresses the immune system reaction that is measured by the usual tests. The medical community has adopted those too-high standards for *diagnosis* (not just research), and thus misses a lot of people who really do have Lyme.
Also, after a period of time, the immune system stops reacting to Lyme, because the human immune system is suited only to other, more usual infections have that shorter life cycles. However, a few infections like tuberculosis, leprosy and Lyme have longer, slower life cycles that our immune systems are not designed for. You can still have an infection with one of these, but the immune system assumes it has killed the invader quickly and quits looking for it in your body. No reaction by the immune system? Then there's a negative (but incorrect) test for things like Lyme. Lyme docs use both the usual tests (Western blot and ELISA, which measure the immune system reaction) but also use another test, which looks for the Lyme bacteria's DNA in your blood (called a PCR, or polymerase chain reaction, test), which provides direct evidence of the infection, not the INdirect evidence of your immune system's reaction.
Your other symptoms are all things that Lyme (and/or its possible co-infections also often carried by the same ticks) can certainly bring, including digestive issues like those you describe. Not everyone has the same symptom array, and that also confuses docs. I had a lot of brain fog and confusion, but had little to no joint pain or gut issues, however I definitely had Lyme. Others here have had symptoms like yours.
You say, "Anxiety has been the worst of this, I feel like I am dying most of the time." That is very much a symptom of Lyme. Lyme bacteria use up magnesium in the body, and low magnesium levels affect mood. You might try magnesium supplements, any type ending in "-ate", such as magnesium malate, orotate, aspartate, citrate, etc., but not the calcium/magnesium combo pills -- for reasons I don't know, these don't seem to work well for Lyme patients, based on comments I've read here and elsewhere. You know how a baby gets floppy after a bottle? It's partly the full stomach and the warmth, but also the magnesium. If you take supplements, be sure to tell the Lyme doc so s/he can factor that in.
In your situation, I would find a Lyme specialist for an evaluation and testing, and I personally would do that first, skipping the nutritionist's machine and the muscle biopsy. A Lyme doc will ask you many questions about your symptoms, which may lead to tests for things in addition to Lyme, such as babesia, which I also had, or bartonella or ehrlichiosis or others. Don't start worrying now, tho, just something to be aware of. All can be treated; the first step is identifying them.
"I have had hair loss on and off since having my first son. I always thought it was due to my hormones, but thyroid testing has been normal." Mention this to the doc too, could be related; Lyme does lots of strange things to hormone levels.
"I also have loss of appetite at times and then other times I could eat all day and not be satisfied." Mention this too.
"I want to feel better and not have people thinking it is all in my head. I am tired of spending money on tests and having them be normal when I feel like I am dying half the time. Like I said before, the symptoms come and go." You have been through a lot already, and yet you have the courage to keep looking for real answers. Don't let anyone make you think this is a character flaw or weakness in you. It's not in your head.
"I am in Western PA, about 2 hours north of Pittsburgh." There is not a specialty in medicine called Lyme, and it takes a little scouting around to find a good doc who thinks more progressive thoughts about Lyme and its possible co-infections. A Lyme doc can be any kind of doc, including a general practitioner or a specialist in any area (tho infectious disease docs, rheumatologists and neurologists are often the biggest Lyme deniers). There is no test to be a Lyme specialist. It is simply a point of view and willingness to engage in forward thinking.
The main voluntary group for docs who think big thoughts about Lyme is called ILADS (International Lyme and Associated Disease Society). ILADS can possibly give you names of member MDs in your area who take a progressive view of Lyme. If you send them an email to
contact [at] ILADS [dot] org
and tell them where you are located (near what big city or what part of the state and how far you can travel), they can send you name(s) of member docs near you. If you don't like the first one, go to another one. And ALWAYS get all copies of your test results and keep a file of them at home. Never know when you might need them for a future doc, and previous doc's offices are not known for wanting to spend a lot of money and copy toner sending you lots of pages.
You will see the term LLMD: it is not a title or a degree, but is simply patient slang for an MD who has more understanding of Lyme and who takes more action than a shrug when faced with a patient with Lyme -- it's shorthand for 'Lyme-literate MD'. NonLLMDs mean well, but they are limited by their own ignorance.
It took me 20 MDs before one finally ran a Lyme test on me, and when the test came back positive, the doc said never mind the positive test, I could not possibly have Lyme. (!) But with that test result in hand, I went home and got online and found an LLMD -- who then, based on my symptoms and test results, diagnosed me with Lyme and one co-infection (babesiosis), treating me with antibiotics for an extended period of time. That was several years ago, and I am now fine and healthy.
We all wish the same for you -- let us know how we can help, okay? Best wishes to you -- you are clearly a strong person, and you can and will get through this. Stay in touch!
Sorry that you are here too. Just to add a couple of things to what Jackie said. I am from Northern VA/DC area. Please check with ILADS but there may not be an LLMD until you get to MD or DC.
When you do find an LLMD, please have them check you for co-infections. I have 2, one of them, Bartonella still causes many neurological symptoms. I have high anxiety too. The brain fog and memory issues was and is very frustrating.
I was bit over 20 years ago and sick but not to the point of disability until 18 months ago.
We are here for you if you have more questions. Feel better.
and got quite a few links and comments on various sites about docs in that area -- sometimes it takes a bit of rooting around online, but there is data available, in addition to emailing to ILADS as mentioned above.
Once established with my own LLMD, the appointments were once a month or maybe every other month, so it's not like you'd be going there every week, if your doc works the same way. If the doc wants more frequent contact, then maybe s/he would agree to a phone check in every other time instead of a physical visit. I'm sure you'll figure it out --
have a read of this thread regarding low vit D, seems to tie in with your blood result and that you feel slightly better in spring and worse in autumn. It will also cause low magnesium and calcium which would be causing a your joint, bone and muscle pain.
So, I went to see a surgeon today to see if he could shed any light, but of the long list of symptoms I gave him, he said nothing jumped out at him (why am I not surprised). He offered a colonoscopy and an MRI of the small bowel to rule out any inflammatory bowel diseases (my grandmother has diverticulosis, but that is the only bowel issue we have in the family as far as I am aware). The colonoscopy is Scheduled for August 5 so that gives me time to look into an LLMD. He said if that comes up negative, then maybe IBS (of course). I am just at a loss. I have been taking my supplements (need to find a good magnesium to see if that helps). I just want to feel semi normal again. My neck and shoulders have been super tight lately and therefore I am getting more headaches!
Do take magnesium. Any variety ending in "-ate" (magnesium citrate, asparate, orotate, malate, etc.) will do, and I would lean toward capsules rather than hard compressed pills, which may be difficult to digest, esp. if you are having possible digestive issues. And no combination of magnesium with calcium -- it seems like a bonus to get two in one, but for reasons I don't know, it doesn't work well for many of us ... maybe the two minerals get in the way of each other during absorption in the gut.
I also read recently NOT to take magnesium at the same time as Vitamin D supplements, because the Vit D can interfere with absorption of the magnesium. I've started taking Vit D an hour after all the rest of my vits and supps.
A week or two of magnesium may start to show some improvement, if it's been an issue. It's made a huge difference for me. I wouldn't have thought I'd notice, but oh boy.
Hang in there, you're plowing ahead when I'm sure you really don't feel like doing so. Keep us posted -- !
I will find a good magnesium. I have been taking a combo of magnesium, Vitamin D and Calcium, but I will maybe start taking them the separately. Maybe that is why nothing is helping either. I am also really trying to watch my diet. I don't think my body is absorbing nutrients properly, either. I really don't think the colonoscopy will reveal anything, but should I go for it anyways?
Thanks for the encouragement. I want to feel better when we go to the beach in August.
If the doc thinks the colonoscopy is called for, then I'd do it, just to get it off the check list. There's a lot of that with Lyme, and with other ailments too ... just keep moving down the list, marking things off, till there's only one or two things left.
And if there's nothing wrong, then you're good to go for at least ten years till the next one is needed (for regular check ups in middle age and after.) The doc who performs the colonoscopy will likely do a written report of findings (or state that nothing was found). Get a copy of the final report from the doc's office, and keep it in your file for future reference in case a future doc wants to see the results.
I had one a few years ago, and while it's a drag to do the prep (the stuff you have to drink to be sure the gut is clean so the little camera gets a clear view), it's really not bad. It's not at all like having the stomach/intestinal flu, which is what I thought it might be like. The whole thing is just kind of boring, but when it comes to health-related stuff, boring is good!
About not taking the Vit D and magnesium at the same time, I didn't know that till recently -- you'd think they'd put it on the label. The mag is great stuff -- I've always been a good sleeper, but with the mag, it's like I go on a wonderful vacation far far away every night, and I wake up feeling very peaceful. Enjoy!
Your symptoms sound a lot like mine, which went away within a couple of weeks of being on a combination of antibiotics. Flagyl and reframpin did the trick for me. I never tested positive for Lyme or any of the known co-infection but doctors in the Hudson valley treat Lyme based on symptoms without bothering with the tests because the tests are so unreliable. I think I have bartonella in addition to Lyme and potentially babesia. I'm six months into treatment, still on the antibiotics, and now have very minor symptoms that dont affect the quality of my day. My doctor wants me to stay on the medication for another couple of months. He's been treating Lyme for 25 years so I'm trusting his experience. Also, I went off the flagyl a couple of months ago and my symptoms came back with a vengeance. This is a disease that teaches you patience. Wishing you a speedy path to finding treatment that works.
FWIW, I felt really good after my colonoscopy for about a week. The findings were minimal (small intestine lymphocytosis), but it was worth it... if anything, just for the realization of what a good colon cleanse can do for your health;). If I could manage to keep on some weight, I'd do another cleanse in a heartbeat! Just giving you some colonoscopy aftermath to look forward to:)
It's good to hear from someone who benefited by the use of Rifampin and Flagyl.
Especially since I've posted how awful those drugs were for me! But I hope I'd made it clear, in my posts, that many people don't have the terrible problems I had with them! Thank you.
You mentioned the Hudson Valley------ are you near Poughkeepsie? Or have you read the excellent series it's published in Lyme disease?
Too bad all newspapers don't publish something like that---- instead of the CDC pap.
I figured I would update. I had the MRI and the only thing that showed up was a normal ovarian cyst. I had to cancel the colonoscopy for now because I couldn't find someone to take me and we are getting ready for the beach this coming week. Things have been super crazy around here. After school starts I am going to start investigating more into the babesia. My jaw has been terrible lately, debating on going to the dentist to see if I have an infection or not. I had a terrible dizzy spell yesterday, but I think that came from my muscles in my neck and shoulders being tight. I will keep you updated.
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