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Lyme's? Neck/Back/Shoulder Pain, Muscle Ache, Skin Hypersensitive, Eye Trouble
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)
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)
Best Answer
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.
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 do take a Magnesium supplement, just a normal 250mg tablet. was thinking of switching over to Magnesium Citrate, as i've been reading it might be a bit more effective
Two stray thoughts:
-- are you taking magnesium supplements, or Epsom salt baths (= magnesium)? Might help the aches and pains.
-- it seems to me it's the time of year that symptoms get worse for everyone. (I should put up a survey on that .....) So part of it may be seasonal.
Hang on to the memory of those 'best 10 days' -- you WILL get there again.
-- are you taking magnesium supplements, or Epsom salt baths (= magnesium)? Might help the aches and pains.
-- it seems to me it's the time of year that symptoms get worse for everyone. (I should put up a survey on that .....) So part of it may be seasonal.
Hang on to the memory of those 'best 10 days' -- you WILL get there again.
they said i had fibro...what a crock my symptoms were so much worse, like wanting to go to he hospital bad,,,
i have had relief from antibiotics, the best 10 days of the past year! so it is bacterial, not viral or fibro.
my pain attack episodes, full body, is back so maybe herx?
i have had relief from antibiotics, the best 10 days of the past year! so it is bacterial, not viral or fibro.
my pain attack episodes, full body, is back so maybe herx?
Everybody presents differently for Lyme but those symptoms could fit Lyme and possibly a co-infection.
My western blot was clean when all of my symptoms started, and still clean again and again for a long time, until now, hence misdiagnosis for a long time.
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-- "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!