Shoulder/neck pain for 4-5 years (rolfing to try and get relief)
History of migraines randomly from age 12
Adverse reaction to certain medicines including certain antibiotics (penicillin confirmed)
Sensitivity to certain smells for several years (bothered by the soap on silverware when going out to dinner)
Had LASIK 5 years ago, light sensitivity since then
Experienced numbness down right arm 3 years ago
Thyroid medicine for 2 years because of being exhausted/cold all the time/low energy
TRIGGERING EVENT Dec 30st- flu symptoms (fever) followed by vertigo. Standing up would cause vomiting.
Eyes “humming” (vibrating back and forth when closed)
Balance issues walking down hallway
Medical treatment (within week of triggering event)– steroid (prednisone) major reaction to right side of face, very painful. Could not complete dosage.
2 weeks after triggering event started on Synthroid, stopped taking after 3 weeks
Other symptoms that very in severity depending on day:
Racing heart
Brain fog
Dizzy
Lightheaded
Swaying back and forth when standing
Incredibly dry mouth
Throat feels swollen (like tongue is too big for throat)
Hands had burning electrical sensation and going into muscle spasm. Sought medical attention for stroke, MRI w/ and w/o contrast came back clear
Higher than normal white blood cell level, all other blood tests clear
Low body temp 97.2
Lost 6 pounds in 8 weeks
Has trouble sleeping
Major fatigue
Depression and anxiety
Very emotional (cries a lot)
No rashes
Next steps are to see a neurologist and endocrinologist
Symptoms improved slowly during January, but flared hard on Feb 15, (6 ½ weeks from initial sickness)
Continues to be impacted by symptoms, physical therapy has helped the vertigo, although she still sways back and forth.
Any thoughts on a diagnosis? Thanks in advance!
Posted by Robin123 (Member # 9197) on :
Sounds like Lyme to me. We don't always get a rash. I too had early neck/shoulder pain and went through everything for it, including Rolfing. Fatigue occurs when the bacteria use up magnesium and we don't have it for our energy needs. It's a brain infection and can affect everything in our brain, including emotional reactions.
I get dizzy if my C1 vertebra, the atlas, is out of place. You could check in with a good chiropractor for neck check-up, also check the occipital junction to the atlas - any of it can be out with us as soft tissue structures tighten up.
Tests usually come back fine, except a SPECT scan can show reduced bloodflow.
Unless the neurologist and endocrinologist are Lyme-literate, they will probably not focus on Lyme disease. You need a referral to a Lyme-literate doctor. I'm pming you.
Posted by lymetime (Member # 21054) on :
Thanks Robin,
I have had lyme for some time and I am in treatment, this is for a friend. Is there anything else you can think of? She really has no idea what is wrong with her...
Thanks!
Posted by TF (Member # 14183) on :
Lyme gave me terribly dry eyes and mouth.
Her next steps sound good. If these doctors can't figure it out, then it is time for the lyme doctor.
Posted by Keebler (Member # 12673) on :
- I suggest seeing an ILADS educated LLMD FIRST.
Then, ask if they know of an ILADS aware, lyme-aware OTONEUROLOGIST to access for SCD. SCD can be caused by lyme still, if you have it, there are certain things that can help along the way if you are diagnosed with lyme or other stealth infection.
SCD is Superior Canal Dehiscence -- part of the deep inner / middle ear {vestibular) system.
You say: Eyes “humming” (vibrating back and forth when closed)
NYSTAGMAS - and if you hear or feel vibrations from your eyes moving that is a classic sign of SCD. See the video below.
You also report: Brain fog, Dizzy, Lightheaded & Swaying back and forth when standing, balance issues, fatigue (all that would sure cause fatigue, of course) . . .
Also signs of SCD or other inner ear issues -- which can be separate but very often go along with lyme. If lyme, then when treated, symptoms often quiet.
SCD should also be considered.
If you might be tested for this, a CT scan is required with extremely specific instructions from the group below. Not just any CT scan can find this, and not even most CT machines will work.
Most doctors have never heard about it. Not even all neurotologists. Get advice from the group below for diagnostics if your LLMD thinks this might need to be explored.
If ANY Treatment is suggested by ANY doctor and you have lyme, a LLMD should review all medication suggestions BEFORE you start. For instance, inner ear doctors seem to often suggest steroids.
STEROIDs can be very dangerous for someone with lyme.
WHY you need an ILADS "educated" or "minded" Lyme Literate doctor (whether MD or ND, or both) - starting with assessment / evaluation for lyme, OTHER tick-borne diseases, and other chronic stealth infections - and all that goes along for the ride.
Medical "models" explained here, as to differences in the ISDA & ILADS models of assessment & treatment - and exactly why it is so very important to know the differences. -
Posted by Keebler (Member # 12673) on :
- You report: racing heart, electrical sensation and going into muscle spasm, fatigue, depression, anxiety.
Indeed, all can be part of lyme & co. Still, even today, there are things you can do that can help while you sort out an appointment.
Be sure to avoid aspartame, MSG (by any of its dozens names). Be sure you are getting NO ADDED GLUTAMATE in any supplements you take. Details:
Excitotoxins; MSG; Aspartame; & "Natural" Flavors (that are not likely natural at all).
A gluten-free diet can also help so many symptoms, really. Gluten detail is included in the set above. Going gluten free lifted depression for me, wonderfully so.
MAGNESIUM DEFICIENCY is very common with lyme and many of they symptoms you report can be caused by that (even if lyme is part of it all, too).
Why I suggest starting support with magnesium today:
Topic: MAGNESIUM LINKS sets -
Posted by Keebler (Member # 12673) on :
- I know this may not be for you that you ask as it's outlined as if it could be for someone else. For quickness of communication, I will just write as if I'm writing to whoever is dealing with all this.
If this is for you, though, looking over past posting history would be of help -- if not for you, of course, that would not be. So, if you are comfortable saying if this is for you, it would be of help so posters could get a fuller picture.
She also reports: "Adverse reaction to certain medicines including certain antibiotics (penicillin confirmed)
& Sensitivity to certain smells for several years (bothered by the soap on silverware when going out to dinner)" --- (end your quotes)
GLUTEN? Many meds contain gluten.
LIVER stress happens with many meds, too.
MCS comes to mind. MCS can certainly be part of lyme - or a separate matter. Liver support is where to start while waiting for assessment with a LLMD.
There are also other things to do that you may or may not have already done. Details in the links.
LIVER & KIDNEY SUPPORT & and several HERXHEIMER support links, too.
"Adverse reactions" to certain medicines could be due to herxheimer reaction from antimicrobials.
And, if the liver is stressed or damaged from lyme or other chronic stealth infection, other classifications of meds can cause all kinds of reactions, too.
Environmental Illness Resource -
Posted by Keebler (Member # 12673) on :
- Gas heat, oven / stove, water heater? If so, anyone with MCS can be much worse with gas.
If she does have gas heat / stove, etc., be sure all the fittings are correct - ALL, even those that can't be seen. If not sure, get a professional in ASAP.
Air flush house at least once a day, all levels, all rooms.
Turn exhaust fan to oven / stove on high BEFORE turning on (can turn off during cooking if all fitting are correct) and just before turning back off again, turn exhaust fan on high.
When turning on and off, "extra" gas can escape so that is why the exhaust fan is vital.
Why air out all levels, all rooms? Gas is light and travels. Then it can hang out in upper levels or stagnant passages. -
Posted by Keebler (Member # 12673) on :
Topic: what do STEROIDS actually do to those with lyme? Risks, long term damage discussed. Links. -
Posted by Keebler (Member # 12673) on :
- ROLFING may not be the best right now. I think it can be very violent to very tender tissue of someone with all these symptoms that, undoubtedly, go with a full systemic condition / infection(s).
IMO, it can also cause "adrenal shock" and even stress the heart & irritate blood vessels' lining from the chemical reaction to the pain of it - raising stress hormones that can cause damage for hours and days afterward.
More gentle massage would be best. I suggest ONLY LL physical therapists or massage therapist.
Get names from LLMD's offices and lyme support groups.
UPLEDGER INSTITUTE - cranial sacral therapy is a style that works for those with lyme, MCS, etc.
Never, ever suddenly twist neck or spine. Never, ever. This can be very damaging for someone with lyme. Upledger does not "do" that, still, it needs to be said up front with any practitioner, at every session -- just in case. -
Posted by Keebler (Member # 12673) on :
- DRY MOUTH, indeed, can be due to lyme or other chronic stealth infection.
CHANGE TOOTHPASTE or just stop using it and use coconut oil and a couple drops of GSE (in set below).
Water need is increased during lyme. There have been times when I need at least a gallon a day. Typically, about 3 quarts, now, though.
Certain medications can also cause it, especially mood or sleep meds (if so, there are other ways to address pain in the liver support links).
While waiting for assessment with a LLMD, some things here can HELP, especially the SEA BUCKTHORN OIL - it helps not just with burning but all to bring back moisture.
"Less commonly recognized is the extensive overlap of MCS with multi-sensory sensitivity, also known as MUSES syndrome. People with MUSES are not just hypersensitive to chemicals but also to all or most other types of sensory stimuli, including: bright sunlight, loud noise, hot weather, light touch on their skin (shirt tags bother their neck), and spicy foods (they eat blander food than before their illness)."
Posted by lymetime (Member # 21054) on :
what type of poisoning are you thinking? she had basic blood work done and it came back clear.
Posted by Judie (Member # 38323) on :
Could be carbon monoxide or VOCs. VOCs usually don't show up in blood work. VOCs come from indoor and outdoor pollution.
Some people (like myself) have gotten poisoned by them. It can be very debilitating (I was bed-ridded for 2 years).
If you suspect your friend my have problems with these, there are some good doctors in California (not Lyme doctors though). PM me if you need some names.
Posted by lymetime (Member # 21054) on :
Blood work Name results range High/low Vit D 22.1 25-OH Low Neut % 76.8 34-71.1 high Lymph % 17.2 19.3-51.7 low Neut # 6.58 1.53-6.13 high Cholesterol 263 <200 high LDL Calculated 188 <100High Chol/HDL Ratio 4.3 High
I know the high neut and low Lymph indicate a bacterial infection, I don't know what to make of the last three, can someone help?