I am a 27 year old female in (well used to be) great health. I worked out 4-5 times a week, I eat healthy, juice and all that stuff. The only issue I have is very very mild hypothyroid... my doctor said I could have gone until I was 40 without knowing I had it.
Back at the end of May (2013) I started getting sharp burning sensations all over my body. Mostly in my arms and legs but I've had them on my chest, back and even my head before. I thought it was a pinched nerve from weight lifting or something so I ignored it but these burning pains never went away. About 3 weeks later (June 2013), I was sitting at work at my desk and I started getting a very weird feeling in my neck/base of my skull. It got very tight and felt like a lot of pressure. Over the next three days, this feeling increased and continued to expand into my entire head until I was so dizzy from it, I ended up in the emergency room, sure I was having a stroke or something. They did nothing there but an EKG on my heart and blood work and sent me on my way. Four days later, I ended up back in the ER. I was really dizzy again, pressure in the head, and having trouble walking because of it. They did do a Cat scan then and more blood work and said everything came back normal.
Since that awful day in June, the pressure in my head has NEVER left. It has certainly let up a lot so I no longer think I'm having a stroke but it has completely ruined my life. Since the ER visits, I've been to a neurologist, endocrinologist, my family doctor, a gastroenterologist, and an ear nose and throat doc. I've had an MRI and got tested for everything under the sun it seems like and everything comes back normal. I've had two Lyme tests with my blood work and both came back negative.
I continue to get new symptoms daily...besides the daily pressure in my head and dizziness, I've started running low grade fevers (never higher than 99.4 F). These will spike, almost like a hot flash, last for about 5 minutes and then go away for a few hours. With this, I get really burning cheeks...but my face never looks red at all. And sometimes I'll have really hot burning cheeks and am sure my fever must be up to 103 F but when I take it, I have no fever at all. The burning pin pricks of pain have worsened to the point where I feel like yelling out in pain sometimes. I have severe shaking/tremors in my hands. I have severe jaw and throat pain almost like TMJ symptoms. The past week I've started getting muscle twitches that have lasted the full week and my left eye has been twitching for days now. Everything hurts. When I wake up in the morning, I feel like I got hit by a truck. I've become very tired. My hair is falling out A LOT. It has fallen out before because of the hypothyroid but never like this...it's everywhere. I've started having breast pain which I've never had before (and I'm not pregnant because that's the first thing my doctor tested for). My lymph nodes have started swelling up. I had a CT scan of them which came back normal and even went to an oncology doctor who pretty much said that I had no need for concern about that aspect.
I feel like I am losing my mind. All the doctors I've been too think I'm nuts. If nothing comes up in the blood work, there's nothing wrong with you in their eyes. I've been to a natural/homeopathic doctor who can't figure out anything. I've also went to someone who looks at your live and dried blood (don't judge, I'm desperate). She did say that my blood shows I have a very bad infection and that my blood showed all the signs for having Lyme. Now I live in Northeastern PA so ticks are not uncommon here and it seems like this summer alone, I know about 10 people diagnosed with it. However, I never had a rash and don't even remember being bit by a tick. There is a lyme specialist doctor in my area but the test he wants to run that he says will show if I definitely have lyme or not is $260 and isn't covered by insurance. Needless to say, after paying all the co-pays for doctors, ER trips, and completely out of pocket for the homeopathic doctors, I have no money right now to get this test done.
I am DESPERATE if anyone could provide me with any kind of answers to my symptoms. I don't know what to do anymore. It has completely ruined my life...it has been over 3 months since the symptoms started. All I do is go to work and go home and lay in bed. I am married and my husband have been very supportive but I do know it's putting a strain on both of us. We even moved out of our house thinking that there was mold or something and that's what was making me sick. But my symptoms never improved.
If you have any information for me, I would really appreciate it.
One last thing... in May 2013 I had quit birth control after being on it for about 7 years. I was getting ill during my period week and my gyno wanted to switch my pill but I just decided I had enough of it. I originally thought this all could be hormonal because of that but I am definitely having my doubts now. I started my birth control again about a month ago to see if any of the symptoms went away and so far, none have.
Reading your story is like reading hundreds of others who have or suspected Lyme and got the same treatment----with small variations in symptoms.
First let me say---- none of us here are doctors. But many of us have been in your shoes and have gone on to devote much time to trying to help others wade through this morass of mis- and dis-information. And we certainly can't say WITH CERTAINTY that you do have Lyme or one of it's co-infections. But your experiences and symptoms are so similar to what many of us have had to endure.
I'm going to address and try to a answer some of your concerns first. This will be just a primer and I'll apologize in advance if my reply seems a bit brusque. That's because I'd like to hit the 'high spots' first----- then I/we will welcome further questions from you.
So----- PA is a state with a high rate of infected ticks. You already knew that.
1. A rash, of any kind, is only present about 50% of the time.
2. Many people never feel the tick that bit them. One stage of a ticks life is the nymph---- which is TINY and people report that they don't feel them.
3. A test done by any lab other than Igenex has a very high rate of error. I'm going to guess that you didn't have a test done there. Igenex tests aren't foolproof either but much better than a CDC sanctioned test.
4. I'm curious about the 'lyme specialist' you said you went to who said the test he wanted to do wasn't covered by insurance. Of course I don't know what your insurance plan is like----- but Igenex tests are covered by almost all insurance companies. Maybe that doctor meant that Igenex doesn't bill your insurance. That may be true, but Igenex will give you paperwork so you can send it to your insurance. Igenex always paid for mine.
5. There is NO test, ANYWHERE that will show if a person DEFINITELY does or does not have Lyme. I always had negative or indeterminate test results from Igenex but my llmd treated me for Lyme after doing many other tests to make sure I didn't have MS, lupus or other conditions. (You've already had most of them done-----so you're ahead of the game now.) My blood work always showed a picture of a healthy person, while feeling like road-kill!
6. Please tell me that you've kept copies of all your test results. :) If you haven't, please ask your doctor(s) for copies and then start keeping any further test copies.
If you wouldn't mind, would you please google Tom Grier then pick the listing that's from LymenetEurope. (Sorry I can't give the link----- forum rules here forbid that) Read his articles, please. They're written so laymen can understand easily.
One last thing------I'm fully aware of how people almost go broke testing and treating for this elusive disease. I understand that your finances are keeping you from getting tested and treated. That's a story repeated over and over and I don't have any viable suggestion for you. I can say, though, that many people have resorted to treating themselves with veterinary doxycycline (that's usually the first drug given for Lyme). I can't say I approve of that------ but it's a fact.
Below is a link to some more info on Lyme that's been posted here. Ricobord is the poster you want to read----- she's active here with detailed information. So much so that some people are overwhelmed by the 'brain-dump' of information--- LOL ---- but it's here and it's free!
Hi, sorry about all you have experienced, it has happened to most of us.
Just to add to what cave said above for your own knowledge I would go to ILADS.org. The Lyme association. There are interesting articles there including Burascano's treatment guidelines.
You can also ask them to point you in the direction of an LLMD (Lyme literate Dr) near you. I am from Northern Va and my old Dr had patients driving from PA to see her but there may be more LLMD in PA itself by now.
Once you see an LLMD, make sure they test you at IgeneX labs for Lyme and co-infections. Like Cave said always get copies of your tests.
Thanks for the comment. I have no idea what Igenex is or even what type of tests I had done for Lyme. I just went to a typical medical lab to get blood taken and sent out.
The woman I went to see who looks at live blood under a microscope said that the lyme specialist I saw was a Lyme literate doctor. I guess he has chronic lyme disease himself and throughout the years, has really changed his practice to concentrate on lyme. I didn't see the actual doctor either, I saw his assistant since he is booked until the end of November and I can't wait that long because I'm going insane. She is the one who told me about the test that the insurance won't cover. That's all she said...the insurance won't cover it. She didn't say if I could try to submit to my insurance after or not, just that they won't cover it up front. She didn't say what type of test it was or what lab processes it only that they have to send it to California to get analyzed so it may take a while to get the results. She is also the one that said, not that it DEFINITELY shows a positive or negative but they have had really great luck with diagnosing people because of it. I guess I worded that wrong in my original entry.
She's the only doctor that decided to test me for lupus and rheumatoid arthritis first. I am still waiting for those results . Based on those, we were going to decide to go ahead with the other lyme test or not. I talked it over with my husband and I'm pretty sure I'm going to get it done no matter what because, like I said, this has totally thrown my life upside down.
I actually don't have copies of any of my tests/blood work...but I did make an appointment with my primary physician tomorrow and I am going to ask for copies of everything.
I don't really know where to go from here. I've definitely spent more than a few hours researching online about various symptoms of lyme and I do have more than enough to consider that I have it. But I live a drug free style, I barely take Tylenol...and I don't know if I could take antibiotics without knowing for sure that I have it. I am just worried nothing will ever show that I have it but they will treat me with antibiotics anyways. But I guess at this point, I'm willing to do anything.
I know, I am SO terrified of being misdiagnosed because I know that Lyme mimics so many other diseases. I'm going to ask my doctor tomorrow to recommend someone outside of my area to go to because seriously, the doctors where I live are useless. If you are sick in this area, it's a death sentence.
Thanks for replying. Sometimes too much information in one big lump is too much for people and they just disappear. :)
I have to run now and will go at this information thing backwards--- for now---- IOW giving information NOT to believe or do. Yeah, crazy, but then sometimes that's simpler.
1. Do not believe ALL that the CDC says about Lyme. The CDC has some of it right but not all. The CDC is great for so many things and I'm thankful that we have it---- but not for Lyme.
2. Do not waste your money or time on any Lyme tests that aren't from Igenex. If your tests were 'sent to California' then the chances are pretty good that it was Igenex.
I'm not sure I'm following your comments about who took what and where. :) But that's o.k. ------ since you said you were going to start antibiotics anyway-----good plan. And remember MANY of us, myself included, never had a positive for Lyme (through Igenex) but because our doctors knew enough we were started on abx (antibiotic therapy) right away.
Read about Igenex at:
I know that a lot of that will read like gibberish but you'll become like the rest of us after you start learning. But this is important for you.
"PAYMENT FOR TESTING
We require prepayment at the time the specimen is sent to IGeneX for processing. We accept Visa, Mastercard, Discover, American Express, Personal Checks or Money Orders. A statement will be mailed to you with information to send to your insurance company for reimbursement."
And your comment:
" But I live a drug free style, I barely take Tylenol...and I don't know if I could take antibiotics without knowing for sure that I have it. I am just worried nothing will ever show that I have it but they will treat me with antibiotics anyways. But I guess at this point, I'm willing to do anything."
How many times have I heard that? How many times have I said that? Hundreds? Hundreds of hundreds? Get started as soon as you can. Then in a few months or a year you'll look back (when you start feeling things shifting towards 'better' or even remission you'll wonder why you were so worried.
But the good news is that sometimes improvement starts quickly.
One bit I'd like to say though, and you may not want to follow up on this (and I'm definitely worried about making you more nervous than you are----- but I've never felt that partial information is sufficient) -------------- but so many of your symptoms sound neurological. That could be 'just' Lyme but it does seem as if Bartonella henselae might be a co-infection that's causing so many of them. The same tick bite can pass on not just Lyme but other tick-borne co-infection. Ticks can be little sewers for infections!
But that's edging toward diagnosing and that's my bad. But it is a consideration that your doctor can decide and talk to you about.
Another topic will be our Herxheimer (Herx) reaction. It's real and it means the spirochetes (bacteria) are being killed. It's a 'good' thing but you might not think so at the time. Don't worry about that for now.
Also, does anyone know if Puerto Rico has ticks? I can't even remember the last time I was outside to get bit by one but in early May, my husband and I went on our anniversary cruise and we went hiking/zip lining in the forest of Puerto Rico. About 2 weeks after we got back is when the burning pains started and about a month later is when the head pressure started.
Thanks again for all the information. Yes, it is a lot to take in and I keep re-reading your comments to try to soak it all in.
Just a quick question because I'm at work. The homeopathic doctor I went to...she pricks your finger and looks at your live blood under a microscope and she is the one that said I have all the signs in my blood that she looks for that shows Lyme. She does recommend a natural way to treat Lyme but she did say in my case, she didn't feel like it was strong enough because she was afraid the infection is in my head. Whatever she looks for in the blood for Lyme was VERY strong in mine and she was concerned about another infection that was affecting my head.
Would anything like that show up in an MRI? I did have an MRI of my head (without contrast) and they said everything was normal.
Puerto Rico 'admits' to Lyme in dogs. :) If there's Lyme for dogs, I'd imagine that humans can get it also.
Getting an area that might depend on tourists for income to 'admit' to having a serious illness is problematic.
Their vector agency isn't going to be as vigorous as, say, in CT. :)
Which bring up an interesting point----- if you did get infected in PR then you might have an entirely different strain of Lyme or even a tick borne disease that can still cause immense problems but not be strictly (sensu stricto) be Lyme disease.
That might be something you'd like to discuss with Nick Harris at Igenex (or your doctor might). Nick is usually very accessible just ordinary people and if he has the time he will talk to you.
Great, that would be my luck to get a weird strain of Lyme! Weird things tend to happen to me!
Who is Nick Harris? How do I get a hold of him? My doctor just laughs at me when I tell her what I think I have so mentioning anything to her is just going to be a waste of time.
Do you know anything I can start taking now, say over the counter or natural that may help the symptoms? Like I said, I'm desperate... I just cancelled a vacation (nonrefundable) to San Francisco in two weeks because I'm literally terrified to be too far away from home with all these symptoms. And every day is something new.
Also, have you ever found a tick on your body? About a month ago, I was in the shower and happened to feel something small and hard on the underside of my breast. I am big busted so it's not like I can really see under there easily, I just happened to feel it when I was lathering up. I was able to use my fingernail to scrape it and something dropped into the shower so I never saw what it was. There was, however, something black still stuck like deep down so I used tweezers and a pin (yes a pin lol) to dig at it to get it out. It didn't look like anything to me at all but it literally left just like a little hole in that area. A legit hole. SO I was wondering if this could have been a tick? I have NO idea how it would've gotten there tho! And there was no rash, no swelling, nothing just plain skin. It looked like a little black mole but like I said, it felt hard and I was able to pick it out. Please let me know what you think!
Nick Harris is the owner of Igenex. There's an 800 number to call on th web site:
He's always been helpful if he has the time. And an 'interesting' topic like yours might pique his interest. But the tech in charge of the lab is also helpful. Don't count on being able to count on being able to talk to him---- That was my 'promise' but I've been able to talk to him (I'm a nobody)
As I said----maybe your doctor? Or an email from you?
I'm going to take a very big chance at irritating you or others here----- but a homeopathic doctor would be close to the last choice I would make for treating Lyme. Sorry.
I can't think of anything 'natural' to take. But eating healthy, and keeping a healthy life style (which I think you already do) would be the best you can both before treating and during. Not to say there aren't some things you, personally, might take that could help with symptoms.
I'm sure someone else will come here and offer suggestions for the supplements that they found helpful.
The main thing about supplements-----it's not that I think they're useless, but to use INSTEAD of science-based medicine is fruitless in my opinion------ and in many others.
As we've said here many times---- Get thee to a Lyme specialist. But make sure they're a GOOD Lyme specialist.
Contrast makes a big difference because I first had an MRI without and I was clear. I have Bartonella, a Lyme co-infection. I have lesions on my breast and on my chest. They are red circular raised marks. Eventually they fade but the shadow remains. I figured its something like that on my brain. It affected my ability to walk, balance, vision issues, lack of memory. With treatment, I was able to walk and other things got better too.
Holy cow... now I am wondering if I should get another one WITH contrast. Not sure if the insurance will pay for two though. I'm going to my doctor today so I am going to mention everything to her...although she will probably just think I'm nuts about the Lyme. I've been thinking about getting another MRI with contrast just in case there's a clot or something in my head that is causing my symptoms and it didn't show because I didn't get the contrast.
About the blood clot worry----- I truly don't believe you have one or you would have stroked out or been dead by now. (Gallows humor! Forgive me----- but it's sometimes the only type of humor I have some days.)
First determine if your MRI was without contrast all the way through the procedure or if just through part of it. Some MRIs are done with no contrast at the beginning and then with contrast through the rest. Now you can see why we keep all our records. :) I'm not casting judgement on you----- because very few healthy people would even think of the need to do that.
One doctor said:
"Would an MRI or MRA of the brain show a blood clot forming, or stroke risk??"
It is not a useful test for looking at the caliber of the artery to assess for risk of stroke or forming a blood clot. CT angiography or cerebral angiography would be better tests for this problem"
The issue is if you had 'lesions' in your brain. Substitute the word(s)
1. White matter hyperintensitives
2. UBO (Another 'cute' word used for lesions---- Unidentified Bright Objects)
3. Demyelinated areas
They all mean the same. I have lesions on my brain. Many of us do, if they had the correct MRI and a Lyme knowledgeable radiologist reading them. It often comes down to the radiologist---- not the doctor. Doctors rarely look at the MRI images. They just read the report that the radiologist gives them.
That's why my llmd handpicked and personally trained the radiologist at the large hospital that performed my MRI.
A 'regular' radiologist might see the same demyelinated areas and pronouce "Possible MS" and your doctor would tell the patient s/he had MS.
It also matters what the doctor puts on the authorization slip for the MRI. Usually a reason has to be provided as to what the doctor suspects. If the doctor suspects MS----- the radiologist will see hyperintensities and say 'suggestive' MS.
See what I mean? It ain't easy.
Unlike SPECT and PET images which assess brain function, MRI captures the physical structure of the brain. Inflammatory abnormalities in the brain are also assessed with MRI scans. In children with neurologic Lyme disease, the MRI may reveal white matter hyperintensities suggestive of inflammation or areas of demyelination. Up to 40% of adults with Lyme disease may also have small white matter hyperintensities, but it should be noted that the number of hyperintensities increase with age – even among patients who do not have Lyme disease. In addition, certain factors such as ischemic disease or a history of smoking may result in an increased number of hyperintense areas.
The white matter hyperintensities are sometimes called UBOs or "unidentified bright objects". In some patients, antibiotic treatment results in a diminution or disappearance of these hyperintensities. Certain MRI sequences, such as FLAIR, are best able to detect hyperintensities. These MRI images in Lyme Disease may appear similar to the demyelinated areas seen in the "white matter" of the brain MRI of patients with multiple sclerosis. The brain MRI of the young patient at the left revealed MS-like lesions in this individual with a fully positive IgG Lyme Western blot indicating immune reactivity against the agent of Lyme disease. Because an MRI scan uses a very powerful magnet, patients with pacemakers or other metallic implants should not get an MRI."
If you do have another MRI a FLAIR might be a good idea. I didn't have one but it does have some advantages.
"Hyperintense lesions are bright, white spots shown on certain types of magnetic resonance imaging (MRI) scans. They can be found on the brain, spinal cord, and liver among other areas of the body and can be related to multiple sclerosis, dementia, diabeted [sic] and simple aging. Hyperintense lesions can also referred to as hyperintense foci, hyperintensities, or bright signals. The type of MRI process that reveals these lesions is referred to as T2-weighted MRI and is a fairly new technique. Scientists and doctors are still evaluating the exact diagnostic meaning of hyperintense lesions in different cases; in some cases it has been been found that there is no outward symptom related to the lesions.
MRIs use interwoven magnetic fields to create images of the all of the tissues inside a body and is most often utilized to make the soft tissues appear in higher contrast than you would see in an x-ray or computed tomography scan. T2-weighted MR imaging uses specific settings for two factors of the imaging process: echo time and repetition time. The bright spots known as hyperintense lesions show areas where the tissue contains more fluid than normal for the tissue type and pools of free water. It is also possible for the data from a T2 MRI to be adjusted so that the free water is not highlighted and the focus is on high concentrations of water within the tissue. This is known as a FLAIR sequence, and is especially useful in testing for multiple sclerosis.
Tissue that has a higher concentration of water indicates that some form of damage has occurred in the area causing the edema that is part of the body’s repair process. Diabetes and hypertension have both been linked to larger-than-average size of hyperintense lesions in the central nervous system; of the two, however, only diabetes has been shown to increase the rate of growth of lesions. In some cases, like Creutzfeldt-Jakob disease which causes progressive dementia, the presence of hyperintense lesions can help lead to the proper diagnosis of the prion disease rather than categorize the illness as typical degenerative dementia. Hyperintense lesions on the liver show the presence of cysts — whether caused by trauma, polycystic disease, or parasites — and/or some forms of cancer. In contrast, one study measured growth of hyperintense lesions on the optical nerve and found no correlation between the presence of lesions and disorders of the eye."
" I've been thinking about getting another MRI with contrast just in case there's a clot or something in my head that is causing my symptoms and it didn't show because I didn't get the contrast."
That might be a good idea. It all depends on what your doctor will do (and by extension, what your insurance company will pay for)
If your doctor admits that the MRI that was doné 'without contrast' (make sure it was the entire procedure not just part of it then maybe your ins, company will pay for it.
(Your report would maybe state "MRI w/wo contrast" which means there was contrast at some point.)
If there was NO contrast perhaps your doctor would admit to the fact that the MRI needed to be re-done.
That depends on how you present the idea to your doctor. Most docs are notoriously not pleased to have a patient question their judgement. LOL But some are willing to listen to reason--- hope yours is the latter.
Well I know my MRI was SUPPOSED to have contrast but I freaked out and couldn't handle being in the machine any longer. I am extremely claustrophobic ( i cannot even go in elevators) so the technician decided not to continue and do the contrast part of it.
I am going to my doctor today after work. I am presenting the idea of Lyme disease to her so I will let you know how it goes. I picked up a pamphlet from a different doc I went to and it has a huge list of some lyme disease symptoms and I highlighted all the ones I have and I'm going to show it to her (I had A LOT of them). I'm also going to mention maybe something was missed in the MRI because I didn't do the contrast.
I know she will probably just humor me because she is super nice but it's worth a shot. Unfortunately, I think the next step for her will be to send me to an infectious disease doc and I don't think one they are going to help me.
You would know if you had contrast because its usually done through an IV.
I am claustrophobic too. Two things you can do for that is get your next one at an open MRI and or ask them for some medication that will relax you as long as you have a driver. Usually your doctor would arrange for that.
Infectious Disease Docs do not believe in Lyme. You would be better off going to an integrative medicine Dr if there is no LLMD near you.
"I'm also going to mention maybe something was missed in the MRI because I didn't do the contrast. "
That's a great idea! I was going to suggest that----- it gives a perfectly good reason (to your ins. co.) to repeat the MRI.
Showing your doctor all your symptoms------ be aware that most of those symptoms can be attributed to other conditions! If a doctor wanted to (yours may not, I hope) s/he could say----too subjective or non-specific and other ways to discredit Lyme.
I just looked at the symptoms on Burrascano's Guidelines and I could find that almost all of them CAN be attributed to other diseases!
As important those were to me in the beginning (sort of validation) if someone wanted to they could say "yes, but....."
Have you waded through Burrascano's Guidelines yet? I know you work but if you could possiibly find time to do that it would be good.
Ignore (for now only) his recommendations about supplements and herbs. Some friends and I found that he has financial ties to the brand he suggests! He didn't provide 'disclosure' which is my main reason for a small black mark against him. If he had---- well, then fine and good. They may be a very good brand----- but disclosure is important. Other than that, he's a very good doctor.
Please listen to mojo (and myself)---- do NOT go to an Infectious Disease doctor. Unless you're incredibly lucky and find the rare one that will treat effectively----- he/she will test you by mostly ineffectve tests (you've already had one). They will not send a test to Igenex. Even if they treat you---- it will be for, tops, 28 days! Leaving you with perhaps a lessening of some symptoms but no way fully treated.
Thought I'd add a few thoughts to the discussion. There's lots of good info here already, so I'll try not to repeat anything. Here comes another "brain dump"... ;)
Every symptom you describe can be triggered by Lyme Disease and possibly Bartonella. (Bartonella often causes the burning sensation in the skin.) The combination of these two usually results in a lot of neurological symptoms. Bart can also cause a variety of GI symptoms. My Lyme+Bart mimicked MS and IBS. They require different medications, and you can't recover from Lyme if Bart is raging unchecked.
Lyme often has about a 4 week cycle to it where symptoms get worse. In women, this almost always coincides with their monthly cycle. Lyme can also affect the hormone control center in the brain. I developed severe PMS, "wild hormone swings", breast pain, and even hemorraghic ovarian cysts before I knew I had Lyme. Both my GP and my LLMD told me to stay off hormones until I was well. (Note: You DON'T want to get pregnant right now. Lyme and Bartonella are often transferred to the fetus and treatment of congenital Lyme can be long, difficult, and costly.)
The MRI isn't very useful for Lyme. Personally, I think you have too many non-MS symptoms for you to suffer through another MRI looking for signs of MS. (Note: NOT a medical opinion, just mine as an experienced patient.)
I had about 20 little unenhanced brain lesions that showed up on my MRI, but not all neuro Lyme patients have them. Some LLMDs now believe the brain lesions are from Bartonella.
I had many tests, too, and except for the MRI and a slightly high thyroid level, all were "normal" even as I was falling apart. I saw over a dozen doctors, went to the ER twice, and was hospitalized for 3 days with severe rib and abdominal (liver) pain. They still insisted I didn't have Lyme or Babesia because I already tested negative and my hospitalist said it was just "too unlikely." They discharged me with a shrug and a bottle of Vicodin (I could barely walk for the pain). I believe the LLMD I saw 2 weeks later saved my life.
The little hard thing you found under your breast sounds very much like an embedded nymph tick. They love to hide in the groin, armpits, under breasts, behind ears, etc. The dark spot left behind in the skin is where the head remained. Ripping the body off the head pretty much guarantees that they'll transfer whatever infections they have. If you had this only a month ago, then you could have gotten yet another strain of Lyme on top of your May infection, which would make you even sicker.
Ticks can be pulled out whole, if pulled gently but steadily for a few minutes with pointy tweazers. But they could still have transferred an infection. You could have gotten one at home before you went to Puerto Rico. What matters is diagnosing you correctly.
Do you have a particular doctor more sympathetic than others? If so, ask that doc to authorize an IGeneX Western Blot for you. You can contact IGeneX to have them ship you the test kit. Then, you carry the form in to your doctor for authorization. The WB is around $200. You do need to pay up front. But nearly all insurance plans will reimburse at least part of it. For me, reimbursement varies based on which doc signs it (almost none for out of network doc and no referral).
Also, ask for testing for Bartonella. The most common is bartonella henselae, but many Lyme patients are turning up with other species that don't show up on lab tests. I recommend IGenex. At a regular lab, my antibodies wouldn't have been high enough for a positive, which means I was (false) CDC negative on all tests for the 3 infections that were just about killing me... Lyme, Bartonella, and Babesia.
A 2012 CDC study showed that only 6 of 10 Bartonella patients tested positive on EITHER a standard antibody test or a PCR test, suggesting that each test correctly shows positive less than half the time. Few "mainstream" doctors are aware of Bartonella let alone willing to make a clinical diagnosis without a positive test.
I don't say the following to scare you, but to give you some ammunition to help convince a doctor who takes your insurance to order the Western Blot and Bartonella tests for you. There was a 17 year old boy in NY who died suddenly after a month of flu-like symptoms. He had already tested negative for Lyme and so his doctors didn't give him Doxycycline for his "flu."
On autopsy, they found that he did have disseminated Lyme. It was in his heart. While they haven't disclosed the cause of death yet, I can only guess it was from heart block. This is a rare complication, but clearly life threatening.
Find a recent news story on this teenager, print it out, and take it to the doctor. Then tell the doctor that this boy tested false negative for Lyme. Then look him/her in the eye and say, "You need to authorize these tests for me, because no one has any answers for me. Other possibilities have all been eliminated and I don't want to end up like this poor boy." Take your husband with you to back you up.
I don't recommend this approach to be manipulative or to be disrespectful of this boy or his family. Quite the contrary. My heart is broken for them. But this teenager is an extreme example of the problem of the CDC and IDSA insisting for years that their tests are terrific and to never treat without a positive. It shouldn't happen to anyone!
And don't forget to tell the doctor about the tick under your breast! Sometimes that's enough to get them to order tests.
Side note: From my interactions with others, tachycardia and arrythmia seem more common than heart block. If you have dizziness, anxiety or feel your heart pouding, get yourself a pulse oximeter to monitor your heart rate. A beta blocker Rx really helped me.
If your doc does not want to authorize IGeneX tests but will order a standard lab Western Blot, make sure the form specifically orders the WB, and not just "Lyme Disease". Labs only run the WB if the screening test is positive. They don't know that it sometimes comes up false negative. I had an experience where the lab did not run the WB in spite of the order! The lab tech didn't notice and just ordered "Lyme Disease" testing. When the ELISA was negative, they didn't run the WB.
You need to do whatever it takes to figure out if you have Lyme and Bartonella. If you do, you need treatment ASAP. At this point, if you do have them, you have a really great chance of being cured. But if you wait until you've had 8-12 months of neuro symptoms, your odds will drop. At that point, it becomes "late stage disseminated Lyme", which is a whole lot harder and more expensive to resolve. I recommend making the Nov. appt with the LLMD and try to get tested before then.
If you have to sell something or downsize your car or borrow money, then do it. If you do have Lyme, you will not get better without proper treatment. Natural/herbal treatments might help, as some have really helped me, but they will not get you well. The longer you wait, the more expensive it will get.
If one of your docs doesn't cooperate, contact a local Lyme support group and ask for suggestions. Also ask your state Lyme Disease association or foundation. Go out of state if necessary.
I've probably overwhelmed you with all this info. But don't worry. Just focus on the next step of getting tested. Ask your husband to help you stay focused on what you need to do next. I had a hard time making decisions and taking actions when I got really sick. I also had memory problems. Ask for help if you feel overwhelmed.
If you only remember one thing from this, please don't let a doctor's "No" or "I don't know" stop you from getting diagnosed and treated. Do what you need to do to get your life back.
Thank you, rico---- for an excellent 'brain dump' ! (sorta an inside joke but one easy to figure out.)
That is a good idea about relating a story about the tick. Sometimes THAT'S what a doctor needs to hear.
Since PA is one of the states with a large incidence of tick diseases and Ixodies scapularis (another word for Elleon's new vocabulary) it's not the same as being in TX or OR where the doctors just DO NOT and WILL NOT recognize Lyme no matter if you have the bullseye rash with a tick hanging on in the middle!!!
Hello. Im looking at my bloodwork for my lyme test. My number came back at .9. 0-.9 is considered negative, .91-1.09 is equivocal and 1.10 is positive. I feel like my number is high and shouldnt be ignored even if they do consider it "negative". My doctor didnt laugh at me when i told her everything. She ordered a western blot test which i know isnt too reliable but its a start. My moms friend had lyme disease and her "negative" test came back at .8 and mine is higher than that soooo...who knows! What do you guys think?
Sounds like Classic Lyme, I too had many of the symptoms you had. Your not crazy. I never had an itchy rash, mine looked like a small bruise, didn't even know it was a tick bite. Months later I was feeling sore and then all of the sudden could barely move and my leg swelled up like a watermellon. Only then went to the doctor and got on Antiotics for 30 days but by that point I had it for months and should have been on it longer. I went back after a month of antibiotics cause felt better but still had migraines but my doctor would not prescribe me more. Six months later I ended up in the hospital for Lyme Meningitus and Cardiac Lyme, my liver, heart, and kidneys were failing due to sever Autonomic Disfunction. It took me at least a year and a half before I even got the help I needed. It has been 3 years now and I am happy and healthy, don't give up.
Elleon, you said
"Also, I'm looking at my order for the Western Blot test. The doctor put "for lyme antibodies!!" on it and circled it. Does that mean anything to anyone? Why did she specify that?"
Haven't a clue! And I'm totally befuddled (probably my brain) but didn't you say that your doctor was going to send your blood work to a lab in CA? I thought that meant Igenex, but it seems I was wrong? Igenex doesn't perform ELISAs (they do the IFA instead) because of the uselessness of the ELISA.
Perhaps your doctor requested an IFA test panel from Igenex? That would report as 'antibodies'.
"Two primary antibody tests are used to diagnose Lyme disease, the ELISA and the western blot. Doctors commonly order an ELISA first to screen for the disease and then confirm the disease with a western blot.
However, current ELISA tests are not sensitive enough for screening and may miss over half the true cases. Because of this, the best antibody test to use for diagnosis is the western blot. To learn more about the tests, click here."
The read out from a Western Blot looks a bit like a bar code.
ELISA's will just give a number, as yours did.
When the ELISA is positive then a WB is run to confirm it. I find that droll since, if the ELISA can be in error 50% of the time------ what's the deal with that???? Two negatives makes a positive or some such nonsense? lol
Thanks for comment. I just private messaged you. Maybe it will clear up about the Igenex tests. Those tests were not run yet, I was waiting to hear from the Lyme Specialist first before I went ahead with those... but I explained it a little more in my private message.
Also, do you think it's a concern that my ELISA number came back at the highest "negative" number to be considered negative? There is such a small difference in numbers between positive and negative, I just can't believe someone would look at that and say definitely that I don't have Lyme.
Ok update... I just got ahold of the Lyme doctor I went to. My lupus and rheumatoid arthritis blood work came back fine. They are still waiting for the Western Blot... I didn't know they ran that, I thought it was just the ELISA one again. I asked them about what they thought about my .9 on my Lyme test and she wasn't really helpful about it. She said she would need to "see the reference ranges". I told her the reference ranges and she just said "let's see how the western blot comes back". I asked her where they sent it to and she said she didn't know. I was talking to the receptionist so maybe she really didn't know. She said it takes about 10 days to come back so to call next week.
" Also, do you think it's a concern that my ELISA number came back at the highest "negative" number to be considered negative? There is such a small difference in numbers between positive and negative, I just can't believe someone would look at that and say definitely that I don't have Lyme."
I can understand 'your' concern-------but since the ELISA has a 30-50% error rate anyway then I'd advise you to forget about that test and start concentrating on your Igenex test. Can you do that? I know that getting all these very confusing facts dumped on you in a few days has got to be stressful.
I'd hate to admit how many hours I had to spend with the two people who 'mentored' me though the same thing you're going through now when I was first ill. (That was mostly by telephone, since the Internet wasn't a big presence then)
I'm more concerned with trying to get you tested (properly) and treated (properly) and that ain't gonna happen until you get to a good doctor who will fully understand that even if (worst case scenario) the Igenex tests come back negative and treat you PROPERLY and as long as you need.
Repeating---- I never had a positive Western Blot with Igenex. Still got treated by a great doctor who understood.
"I asked her where they sent it to and she said she didn't know. I was talking to the receptionist so maybe she really didn't know."
O.K. here goes! LOL
1. Ask the receptionist to FIND OUT where the test was sent.
2. Ask the office manager or PA where the test was sent.
You pay their salaries. You have rights.
Igenex may be willing to tell you if they've received a test requisition from such and such a doctor for such and such a patient (you).
They can't give results, of course, but that would answer the question ---- where was your test sent.
But first I'd ask the receptionist or PA or office manager to find out! It certainly can't be that hard.
Okay well I called and the receptionist asked what type of insurance I have and I said Geisinger so she said the test was sent to Geisinger. I don't know if she's making that up or not to get me off the phone. Why would that take 10 days though? The main Geisinger, which I think is the one she is talking about, is located about an hour from where I live now.
"The health system has offered online access via its MyGeisinger EHR web portal for close to a decade. Even though state law does not allow direct patient access to test results, patients can still see this data because of rapid provider review and release. In other words, even though it’s technically not direct, it feels that way to patients."
"Sandra Kelsey is the technical specialist for GML's Immunology, Flow Cytometry, and Serology Laboratories. She received a Bachelor's degree from Bloomsburg University and completed an internship in Immunopathology at Geisinger.
Sandra joined GML in 1982 and has worked in various areas, including Histocompatibility, Immunology, RIA, Chemistry, and Flow Cytometry."
Hmmm. Just a BA? Wonder how long the internship was for?
See if Geisinger Labs has an 800 number, then call Sandra and see why it's taking so long.
I know people that belong on these 'patient portals' where the information is really slow to get posted. My patient portal is spotty---- sometimes slow sometimes fine.
You're so right about not calling people just when they're getting ready to get off work. Same goes for almost any time on a Fri and esp. in the afternoon. LOL
Bachelor of Arts----- by the time you finishing learning all this stuff you could get a Bachelor of Science degree! Or in Investigative Journalism.
Maybe she did get a B.S. degree but it also might have been a Bachelor or Fine Arts. It's not stated on the site what her degree was in, which may be an innocent omission, but the Devil is always in the details when it comes to MY health or others.
Okay so i started my menstrual cycle today and lo and behold my fevers are raging! This is why i originally thought it was hormonal. The fevers started with my period in June. Then nothing in July. Then fevers with my period in August and then they never left...never above 99.4 except for now of course. Makes sense since some of you commented that Lyme runs in 4 week cycles and may correspond with a womans menstrual cycle.
It's not been completely verified (if at all) that a person can pass on Lyme.
There was a flurry of conjecture a few years back about that. That was probably because Bb (Borrelia burgdorferi--- the name of the spirochete responsible for Lyme) was purportedly found in semen of at least one person.
So, IF there were to be transmission between sexual partners it would be more from the male to female.
The general consensus though is if a family member or sexual partner had Lyme it's because they share the same environment rather than transmission via blood/semen/coughing etc.
So, I would say, that no, your husband won't contract Lyme FROM you. But that's just my guess based on what information I've read so far.
Speaking of which---- a while back you wondered if you might have contracted Lyme in PR because you said you said " I can't even remember the last time I was outside to get bit by one"[tick]
I didn't comment at the time----- but a person doesn't have to go outside to have exposure to a tick. Wherever mice are (and they're in the best of homes/apartments/condos,,,,,,in the walls, basements, attics etc.) a tick might fall off that infected mouse after it's final blood meal, lay it's eggs (between a few hundred and several thousand). When they get to the nymph stage they will look for carbon dioxide from a mammal and perhaps bite that mammal.
Just because those ticks are often called deer ticks it's the mice you have to be concerned with.
Well my doctor said she is willing to give me the normal two week dose of the doxycycline. I know I need more aggressive treatment since it's been months with symptoms. But do you think this two week course with help alleviate any of the symptoms?
Also I have been reading a lot about herxing (?). I am slightly terrified of this because if my symptoms get any worse, I'm sure I'll have a stroke. If anyone could help me out with more info on that, I'd appreciate it.
Two weeks of doxy is NOT normal except within the narrow constraints of the IDSA guidelines. Those guidelines are potentially dangerous---- because of the dangers of undertreating----- iow kill off the weak bacteria (Bb) and send the strong ones into hiding, only to come out after doxy is stopped.
400 mg a day for 3 or 4 months (usually more) is what ILADS recommends
Increasingly, clinicians recommend that certain drugs used for
Lyme disease be given at higher daily doses: for example,
3000–6000 mg of amoxicillin, 300–400 mg doxycycline and
500–600 mg of azithromycin. Some clinicians prescribe antibiotics using blood levels to guide higher doses. Close monitoring
of complete blood counts and chemistries are also required with
The two week course MAY help with symptoms. Temporarily. If at all.
A herx is usually no fun. :( I can't say if you will get a severe herx or not---- and herxes are very subjective.
But almost all of us have had a herx or two or many more and lived through them. That's all I can say.
You really need to get to a doctor who really knows about Lyme disease! The doctor you're seeing is not the one. (That's tough love and it's hard to hear but it's true.)
2 weeks of doxy won't do much but better then nothing. It may give you a herx, as it did for me the first time I took it. In reality although herxes feel bad, it means the meds are killing the bugs and your body is getting rid of the toxins.
If you are unable to find an LLMD, or even an integrated medicine doc, I might go to a naturopath. I believe in antibiotics to kill the bugs but others believe you can get well with herbs. I take herbs as a supplement to my antibiotics.
Well I am still waiting for the Western Blot to come back from the Lyme doctor I went to (the one I messaged you about). So I don't know if I should see how that turns out (even though it's not reliable) and then talk it over with them and see how they want to treat me or just go ahead and try the 2 weeks of doxy my family physician wants to try.
I don't however want to take the doxy for 2 weeks and then have the symptoms return even worse because I honestly don't think I can handle it.
I have no idea what to do. At this point, I'm ready to give up. I don't care anymore, I will forever just live a miserable life because honestly this is all ridiculous to me.
Did your symptoms come back worse after you took the doxy? I am worried about the herx because most of my symptoms are neurological and I'm afraid I'm going to have a seizure or something like that.
I originally went to a LLMD but have to wait until next week for the results of my western blot test. Then I have to make an appointment and ask them what they think is my next move. I am going to call my homeopathic doctor I go to. It's worth a shot...if my mother in law can beat cancer with only herbs and juicing, there could be hope!
Can you make the appt NOW instead of waiting until the tests come back? It would shorten the time frame.
A herx usually means a worsening of symptoms. But usually it lasts only a week or a little more. My herxes with doxy were usually a slight nausea for which I took ginger tea or peppermint tea. The nausea went away after a week or more. But the best treatment (for me) for doxy nausea was Salt and Vinegar potato chips. LOL
Did your mother in law ever have any chemo or radiation treatments for her cancer------ or did she only use herbs and juicing?
And, what I've lost track of completely----- is do you really have Lyme disease at all? Sigh.
Perhaps the only way to find out is to be tested and treated via Burrascano or ILADS and wait and see if you get better or not. I did, but it took a heck of a long time. Some get better within a few months or at least less than a year.
My mother in law only took herbs and juiced like crazy for two years. She went to the doctor to get the cancer diagnosis, that was all. She then tracked down a natural doctor here in Scranton, PA (who unfortunately passed away or I would so be making an appointment with him). This guy was amazing, I've never seen anyone like him. But with herbs and juicing, she completely beat it. That was before I even met my husband so over 8 years ago, and it hasn't come back since.
I'm starting to question if I have Lyme but I'm also starting to question my sanity.
I just messaged cave76. My Lyme specialist doctor just called. My western blot came back positive. They are starting treatment for me on Monday. They also want to run more blood tests , the Igenex one which I'm getting blood drawn for that on Monday too.
Honestly, I just cried like a lot. I'm so happy someone listened to me and I'm so thankful for that natural doctor I went to who looked at my blood and said it was Lyme.
You're experiencing that perverse sense of relief that many of us (myself included) feel when we finally 'get an answer'!
So many times it's the not knowing that makes a person feel like their going crazy. "Knowing" gives a sense of purpose, even though the news isn't good news (about a disease) But at least now you can start trying to 'fix' what's wrong and you'll have a doctor on board! I hope he'll give the recommended doses and length of time for treatment-----not like the pathetic (sorry) 2 weeks of doxy!!!!
Nick Harris said (about people who had had doctors insinuate that 'it was all in their head")-----Now you can say, "Yes, It WAS in my head! The spirochete was in my brain and now I can try to get rid of it!"
Now you'll start the usual ups and downs of treatment. Don't be afraid and this group will always be here to listen to you.
i had a CT on my hip and showed nothing but after seeing the osteopath he dxed with bursitis. right away he knew! older wise good doc... when i massage it with ice i can feel it is large. and inflamed..so why is nothing shown on the CT?
going to neuro Thursday so i may get MRI and should question the contrast part
much of your story, like mine in a way. but i was never referred. 2 years and i am finally going to a neuro. !!!
all my lyme tests were negative. igenx too.
stabbing pain twitches fatigue. temp 95.4 when i feel hot. joints, feet pain increases all over body with exertion.. even just drive to a few errands..
so sorry you are here but glad you found us.
my previous docs thought i was nuts. .
i transfered to the md i have now and he actually said,,,after reading my records from previous doc..
it went something like this.
Me: I don't know what is wrong, i thought it was lyme.
Doc: well yes your symptoms are like lyme..i read you had many lyme tests. that were negative, you know you don't have lyme.
Me: well i guess so
doc: "so you admit that you do not have lyme.
Me: ah yeah.
he was trying to catch me into admiting i have doubts ..i have no dx on my condition, live in Vt have been bit by ticks as a kid in NJ ( we would pick giant ones off out heads! ) and 20 years here.. at least 6 i know of...no rash... or flu that i remember could have had a flu that co insided with tic, i don't remember ...
52 still have regular periods WTF! where is menopause..?
i think my issue is medication induced myopathy. a Rhumy i saw 6 years ago said that. at the end of her report...(i just got the records! this Aug. no one told me ..as my records got passed from doc to doc no one read it! and they all said, well you went to rhumatology in 2010, and they all said your rheumy was inconclusive...
i kept telling them that i went a long time ago.. 2007..i was dismissed. so now my records say, was seen by rhumatology in 2010...!
so get all your records!!!! beware of medication.
BYW i had a hard time with circulation when i tried The Pill in my 20's. could never take it. even the lowest dose.
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