So it all started around this time last year. I would get pretty bad tension-like headaches that would persist for weeks at a time, the worst lasting 3 months. In October 2011 it went away, and I was fine til January of this year. I woke up one day with a stiff neck/headache, and every day after that it worsened until i went to the ER feeling faint/dizzy/weak. Ever since the trip to the ER i have been experiencing a myriad of symptoms that no Doctor I see can explain.
The consistent pain in my neck/shoulders/back is always present, accompanied by shadowy vision/floaters (24x7), burning sensations in my hands/feet, muscle aches in my arms/legs/chest, skin hypersensitivity (if i touch any part of my body it will feel like i have sunburn there for a few minutes), sensitivity to temperature (if it gets too hot my face gets flushed/hot/irritated, but i can walk into a room with AC and start to shiver).
Brain MRI, EMG, X-rays, blood work, EKG were all normal. MRI revealed I have Paranasal Sinus Inflammatory Disease, but otherwise was normal. Neuro assured me it wasn't neuropathy due to the EMG result. Tested for Lymes by a GP and that was also negative.
Been taking a daily multi vitamin & b12. 27 years old, 6 ft tall 150 lbs. I also work at a computer 8-10 hours a day and have poor posture. Was very healthy up until this.
I recently saw a rheumatologist who thinks it might be Fibromyagia. I was then referred to a physical therapist, that believes it is in fact a result of poor posture and sitting in front of a computer for 10-12 hours a day.
Would poor posture/shoulder/upper back pain cause all of these symptoms? or is another strain of Lyme's possible? (as they did a western blot test)
Welcome -- a few quick comments on your post above, and a suggestion:
-- "So it all started around this time last year."
This is consistent with Lyme: summer --> ticks --> infection.
-- "I would get pretty bad tension-like headaches that would persist for weeks at a time, the worst lasting 3 months. In October 2011 it went away, and I was fine til January of this year. I woke up one day with a stiff neck/headache, and every day after that it worsened until i went to the ER feeling faint/dizzy/weak. Ever since the trip to the ER i have been experiencing a myriad of symptoms that no Doctor I see can explain."
Everybody's symptoms in Lyme and other diseases that come along with it (co-infections) are a little different, but your description fits in well with what I and others experience(d).
-- "The consistent pain in my neck/shoulders/back is always present, accompanied by shadowy vision/floaters (24x7), burning sensations in my hands/feet, muscle aches in my arms/legs/chest, skin hypersensitivity (if i touch any part of my body it will feel like i have sunburn there for a few minutes), sensitivity to temperature (if it gets too hot my face gets flushed/hot/irritated, but i can walk into a room with AC and start to shiver)."
The various co-infections have slightly different symptoms, and even the same infections in different people show up differently. I didn't have exactly what you do, but others may speak to these -- depends on what co-infections you may have. Bartonella is a possibility ... Have you seen an ophthalmologist? At some point, you should; they take Lyme more seriously than most other docs.
-- "Brain MRI, EMG, X-rays, blood work, EKG were all normal. MRI revealed I have Paranasal Sinus Inflammatory Disease, but otherwise was normal. Neuro assured me it wasn't neuropathy due to the EMG result."
This is consistent with Lyme: these tests are not attuned to detecting Lyme. A Lyme specialist would be more likely to use a SPECT scan, which looks for areas of diminished blood flow in the brain.
-- "Tested for Lymes by a GP and that was also negative."
The standard tests for Lyme are lousy, so I wouldn't put too much store in this negative result. There in another test a Lyme specialist would order, called a PCR test from IGeneX labs, but you'll get to that when you see a Lyme doc.
-- "Been taking a daily multi vitamin & b12. 27 years old, 6 ft tall 150 lbs. I also work at a computer 8-10 hours a day and have poor posture. Was very healthy up until this."
Yeah, we all look to ourselves and our habits to explain our illness, since the docs can't find anything. But until you've had Lyme and its co-infections ruled out by a competent Lyme specialist, don't assume it's your posture etc.
-- "I recently saw a rheumatologist who thinks it might be Fibromyagia."
There are three specialties that most particularly are ignorant about Lyme: rheumatologists, neurologists and infectious disease (ID) docs. They are not trained to look for it and have a terrible blind spot when they do encounter it. Fibromyalgia, along with a bunch of other 'syndromes' (meaning a collection of symptoms with no known cause) is a common catch-all diagnosis by docs who don't want to say "Gee, I dunno." Till you have affirmatively ruled out Lyme and its coinfections, I personally would NOT accept a diagnosis of fibro.
-- "I was then referred to a physical therapist, that believes it is in fact a result of poor posture and sitting in front of a computer for 10-12 hours a day."
Not going there.
-- "Would poor posture/shoulder/upper back pain cause all of these symptoms?"
Wouldn't think so.
-- "or is another strain of Lyme's possible? (as they did a western blot test)"
There are indeed several strains of Lyme, but the problem is that the usual tests are simply not very accurate for ANY strain of Lyme. Perhaps half of all Lyme infections are not picked up by the test, for several reasons.
-> One reason is that the test is looking for antibodies your immune system makes to the Lyme bacteria, and after a few months, the immune reaction tends to trail off. No immune reaction, no positive tests.
-> A second reason is that Lyme bacteria are adept at hiding in the body where the immune system cannot detect them and make antibodies. Again: no immune reaction, no positive tests.
-> A third reason is that the standard tests were intended not for diagnosis, but for epidemiological tracking, so the standards for a positive result are set VERY high, meaning that a not insignificant number of infections are ignored in order to have pure data for epidemiological (not diagnostic) purposes.
-> A fourth reason is that some of the very specific indicators in the test are ignored because some years ago, a Lyme vaccine was attempted, and the test portions that would show positive due to the vaccine were eliminated from the test to avoid false positive test results. The vaccine failed, however, but the indicators were never added back to the test results.
So, to answer your question: yes, there are several strains of Lyme, different in the US, in Australia, and in Europe (at least), but there are tests for each of these, and a doc would test you depending on where you have lived and visited.
My best advice is to find a Lyme specialist and get a work up and likely more testing, with an IGeneX PCR test, which looks not for your immune system reaction to the bacteria (which can trail off as mentioned above), but looks instead of DNA bits from the Lyme bacteria -- a direct indicator rather than an indirect indicator.
A Lyme specialist would also know from your symptoms and history what other infections to test for, based on your symptoms, and would also know how to read the test results and formulate an appropriate treatment regimen. NonLyme docs think a few weeks of doxy is fine, but Lyme know that it is insufficient due to particular characteristics of the Lyme bacteria and the importance of treating co-infections, which often need separate meds.
Your profile doesn't say where you are located, and in some states, Lyme specialists are difficult to find due to suppression of their views by local medical authorities. Some Lyme docs go 'underground' and don't want to be associated with what so-called mainstream medicine views as heretical and improper treatment that Lyme specialists often use, such as prolonged antibiotic treatment (months, not weeks).
The main voluntary group for Lyme docs is Intl Lyme and Associated Diseases Society, website ILADS [dot] org. If you email to:
contact [at] ILADS [dot] org
and tell them your location, they may be able to send you name of an ILADS member doc. But remember, there is no one approach that even Lyme docs take, and frankly I think some of them are squirrely. You will see the term LLMD, short for Lyme-literate MD, which is not a title or qualification, but patient slang meaning a doc who thinks beyond mainstream medicine's approach, which you have already experienced.
Let us know how we can help further -- best wishes, and don't give up!
You're very welcome. Columbia U medical center has an excellent Lyme research center in Manhattan/UWS, but I don't know if they take patients or have a referral service .... you could check their website, which is stuffed with interesting and useful medical information, in you're inclined to read that sort of stuff. I tend to, just to keep an eye on the docs. Trust, but verify.
Everything Jackie said is right on. I am being treated right now for shoulder, neck, and arm pain. I have Lyme and Bartonella, most of us were misdiagnosed with one or many other illnesses. Mine included fibromyalgia, MS, Lupus, Hashimotos....etc you get the idea. Before I found an LLMD, I woke up on a respirator in the hospital half dead from the steroids I was given for my non existent lupus. Steroids is a big no no with Lyme since our immune systems are so compromised, except in certain circumstances.
I know since I am from the NE that you shouldn't have a problem finding an LLMD . Good luck and let us know how it goes.
You do sound like you have Lyme Disease. And unfortunately, our story of going from doctor to doctor without answers is common.
If you have any doubts about having Lyme, just look at the Burrascano symptom checklist and see how many you have. You can find it on the ILADS site at
I have Lyme and Bartonella, and I also tested false negative in both my blood and CSF. I finally showed diagnostically positive on a Western Blot at IGeneX. They do a much better job of testing than other labs. Do you have a copy of your WB results? Would you be willing to tell us what bands you are positive on (if they showed any)? ,
You can show Lyme specific bands on a Western Blot and yet still test CDC negative. The CDC surveillance criteria only looks at certain bands and ignores others. No, this doesn't make sense, but it is a long sordid story that continues to this day. There are some people who don't show any Lyme specific antibodies because they are immuno suppressed and are very sick and their bodies just aren't putting up much of a fight any more. That is why ou need an LLMD, a good, exoerienced doc who knows how to diagnose and treat tick borne diseases.
If it has been a long time since you were infected (like a year or maybe even less), your immune system may have stopped making the antibodies that the tests measure.
Therefore: negative bands, but the Lyme bacteria may still be there in force.
You could also have other diseases not detected by the tests. A Lyme doc could, based on your symptoms and history, test for other infections that often come from the Lyme ticks, like babesia and bartonella. These need different testing and treatment from Lyme.
I don't think that nerve problems in your neck would cause vision distortions. The eyes are an extension of the brain, and it's more likely that the vision issues are a problem with the eyes themselves or the nerves in the brain that process their signals. I also can't comprehend how poor posture can cause vision problems. Celiac does cause neurological problems and headaches, but I believe muscle aches are a result of a connective tissue problem. I guess it's possible you have developed multiple autoimmune disorders at once, but your rheumie or neuro would have seen some signs by now.
Have you had any steroids or immunosuppressing drugs lately? I will assume your GP checked your thyroid and blood sugar already and they are okay.
I just reread your symptoms and I just can't shake the thought that it is Lyme. All the other theories only cover part of your symptoms. Lyme covers all of it. (You can google any of your symptoms along with the word Lyme and see others' descriptions of it.)
Your supposedly complete negative WB really isn't. I'll try to explain. Not all Lyme patients seroconvert from IgM antibodies to IgG antibodies. The "powers" of Lyme insist you must convert within a month of symptom onset, but some of us just didn't get the memo on how our immune systems are supposed to react. I didn't convert. Six years after infection, I only showed results on the IgM panel...my IgG panel was negative.
In reality, every IgG antibody was first an IgM antibody. This is where IGeneX is different. They report all relevant bands on both.
The test you got is only looking at the CDC surveillance IgM bands, which left out two of the most Lyme specific bands, 31 and 34. They are so specific and common, they were used in a vaccine development, and left out of the IgM surveillance because anyone who had the vaccine would show positive on these two bands, even if they didn't have Lyme. This criteria was developed assuming everybody would be using the up and coming vaccine. The primary consultant on the vaccine is the one who proposed the criteria, Dr. Allen Steere himself. How's that for a conflict of interest?
You could easily show Lyme specific antibodies on the IgM panel that aren't apparent here because the lab didn't look at them. You could also be showing Bands 31 and 34 on the IgG, but this lab didn't look at those either. (Do you see why Lyme treating physicians are so frustrated with the CDC testing?!) You need that IGeneX WB to see what this lab doesn't show before you can make any conclusions about Lyme.
Also, have you been tested for Bartonella, Ehrlichia (HME), Anaplasma (HGA), Babesia, and Mycoplasma? (IGeneX is the best...many LLMDs say other labs are mostly worthless on these tests). Presence of these coinfections can change and confuse the presentation of symptoms.
My next suggestion would be to take some Lyme killing antibiotics for a while, see how you feel, and retest at IGeneX. LLMDs call it an antibiotic challenge. Of course this requires a doctor who is willing to try it. There are more doctors out there these days willing to do this...you might need to ask around to find one.
Yes, magnesium supplements would help with muscle aches and possibly also neurological and heart related symptoms.
The PCR test is most useful when done after taking some antibiotics. i have read that it is negative more often than positive when done before antibiotic treatment. (Mine was done before, and it was negative.) But most mainstream doctors either don't know about PCRs or were taught that they are "unreliable", whatever that means. Generally, only experienced LLMDs are willing to order PCR tests.
An experienced LLMD is your best bet for getting an accurate diagnosis. If there are barriers to seeing one, or you want to be sure you have Lyme before incurring the wait and expense of an LLMD, then ask your current doc if s/he is willing to try the antibiotic challenge followed by both a WB and PCR.
If you want something to show your doctor to help justify the tests, you can look at the IGeneX website where they explain their tests. You can also google "Tom Grier Lyme tests" for articles by a scientist explaining why Lyme tests are flawed. He had Lyme and coinfections for 13 years and has been a Lyme advocate ever since. The Tests Explained page on drjoneskids.org also gives a good readable list of the relevant bands for Lyme and what they mean.
Wonko, you say above: "The PCR test is most useful when done after taking some antibiotics. i have read that it is negative more often than positive when done before antibiotic treatment. (Mine was done before, and it was negative.)"
In contrast, the IGeneX website says: "The PCR (Polymerase Chain Reaction) test detects the presence of the DNA of the Lyme bacteria. PCR tests have more sensitivity early in the disease before patients have received antibiotics. The best specimen to test has not been defined. The test is usually performed on whole blood, serum, urine, CSF, or miscellaneous fluids/tissues."
my neck back and arms hurt so bad i can barely roll over in my sleep sometimes i sleep kinda sitting up with my arms resting on 2 pillows on my stomach.
3 months ago it felt like i needed a sling and a collar!
for 3-4 weeks i would put my left arm through my button down shirt to hold it still.. like Napoleon. i couldn't move my head well. couldn't hold my body up and i am 110 pounds!
3 weeks ago my right arm started the same thing. no reason but went away after 2 days.
i get a feelings of a bruise, the palm of my hands, bicepts. like i was punched in the arm or bruised butt or thigh..
i did not injure myself and it went away after a day.
now if your butt cheek feels like you just fell on it hard iceskating and then there is no black and blue and the next day it is gone well. it is not a bruise.
I agree 100% with Rico. I tested negative with mainstream doctors and the tests they gave me. I was given so many false diagnoses that I told them I should be written up in a medical journal since I have all theses diseases at once. I was actually kicked out of my doctors office in TX because she wouldn't admit I had Lyme and I wouldn't give up. She believed in the CDC results but when I came to FL and saw my igeneX test results they came out plosives for Lyme, Bart's and finally Babs. Your symptoms sounds like Lyme to me and you should get tested for co-infections.
For this reason, ILADS is asking folks like us to tell our story in order to train the mainstream docs on signs and symptoms.
Would body aches/headaches, eye sensitivity, and skin hypersensitivity be contributed to Lyme's? I never have Fever, Fatigue, heart problems, etc. and the issues NEVER go away- all have been chronic for 6 months with the only issue prior being headaches.
Do try different kinds ... I still take Mg everyday, and I recently ran out of my favorite combo, which has three types of Mg: citrate, aspartate and orotate (the label calls it 'Magnesium CAO').
Since I get the the CAO by mail order and haven't found it in a store here, I bought some Mg malate the other day, and it's just not kickin' it. I'm guessing everyone reacts differently at some level, so whatever works for you. I tried several formulations before settling on the CAO.
I take 400 mg per day, with no ill effects, and I am super-sensitive to EVERYthing. I was told that the sign you are taking too much is that you get diarrhea, and that's never happened to me. The American diet is apparently often deficient in Mg .... fwiw.
I take 600mg of magnesium a day. Our bodies are quite ineffecient at using it and can only absorb so much at a time. I actually take a 200 mg capsule 3 times a day. I feel better doing this than taking it all at once. Even twice a day is good.
I tried an unlnown kind of magnesium in green gelcaps my hubby bought me at Costco. It didn't work for me at all. The basic white tablets worked much better, which I believe was mag citrate. I bought the same kind Jackie uses and have been very happy with it. The absorption is good, and it is an easy to swallow capsule. Another brand I tried turned out to be a giant tablet that could choke a horse.
Another microbe to be checked for is toxoplasma gondi. The little vermin can cause some of the symptoms you have. This is another often overlooked coinfection that ticks can bring. A large percentage of the population has been infected with this parasite at some time in their life. No problem as long as your immune system is strong. They can hide out in the cyst stage until something else comes along that weakens your immune system, then they can reactivate.
a few years ago i was diagnosed with benign tremor, i had a slight shake of my head,i understood it was slowly progressive,one day my hands and knees shook BIG TIME at the er the nurse told me even my eyeballs were shaking i was given anxiety medicine family dr. just knew it was depression meds did not work was put on an anti convulsive meds shortly after myocloni jerks started was sent out of town to a neurologist he just changed my meds still didnot control jerks in meantime started going to a chiropractor internest who deals in holistic medicine found i was full of viruses etc. have been fighting lymes and co infections,also find my anti convulsive meds can cause viruses stopped taking my statin meds which stopped the jerks for awhile,going again now which i find tremors can go with the lymes infections,frequency specific treatments help along with lyme nosode meds,am wondering now if that was originally lymes instead of benign tremor that first started this it never seemed right that it struck with such vengence
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