posted
I am 42 and most of my symptoms started immediately after my hysterectomy (2014) and post op med toxicity (macrobid).
I had neuropathy and liver injury. When those slowly improved - all of the muscles in my body (scalp to legs to colon to throat to vagina - everywhere) went haywire.
Tightness, spasms, twitches, pain...intermittent - some worse or more often than others. Also, extreme exhaustion, little to no deep/restful sleep and brain fog.
I still deal with all of this to this day. So many doctors and so many tests. No real answers and a lot of blowing me off and acting as though it is in my head – even though my Physical Therapist can feel and see the muscle issues.
Weirdest thing is...my stepfather (62) started having the same symptoms about a year ago after he had hernia surgery.
We do not live together and haven't for many years. But we both live in SE Wisconsin. We do not share any DNA. Yet our symptoms are nearly identical and both started happening seemingly out of nowhere.
Today I asked my mother - could we have both been bitten by a tick years ago while camping or something? She said that it has been mentioned to them by others that this could be his issue.
I did have a basic Lyme test last year. I will attach those results - doc said negative. His was also negative according to his doc. But I have read that this test may not be accurate.
My questions - do these symptoms fit? Where to go from here? Is it even worth it to know - meaning...do treatments even really help?
After two years of so many doctors and tests and so many bills and rolling eyes - I cannot take anymore useless/worthless appointments. Is this worth pursuing? And most of all, can you help
posted
I have not had FQs - only the Macrobid. But my stepfather has had FQs.
I have supplemented with magnesium for years. Good forms, fairly high doses, throughout the day. Doesnt make any difference.
Posts: 3 | From Racine, WI | Registered: May 2016
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posted
Tes, it's possible you could both have been bitten by ticks. Lyme often gets worse after a trauma, when the immune system is stressed.
You could both try doing the IGeneX Western Blot tests for Lyme. Also, the co-infection babesia can make for even more fatigue - google symptoms for it and see whether you think you match any of it.
If you qualify for low income, www.lymetap.com covers 75% of IGeneX testing costs. Tests are not perfect - many reasons why they might come back negative.
Alternatively, you could ask for Lyme-literate doctor referrals in the Seeking A Doctor section, if you would like to go see one. Lyme doctors often treat clinically, by history and symptoms.
Posts: 13117 | From San Francisco | Registered: May 2006
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Jordana
Frequent Contributor (1K+ posts)
Member # 45305
posted
Lyme is definitely in Wisconsin and they're really clueless about it there. You could spend YEARS listening to them tell you it's nothing or something else.
You can go here and get a test kit for Igenex testing:
truehealthlabs.com.
Posts: 2057 | From Florida | Registered: Feb 2015
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posted
If you need a list of LLMD's for WI, please post in Seeking a Doctor.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96223 | From Texas | Registered: Feb 2001
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Catgirl
Frequent Contributor (5K+ posts)
Member # 31149
posted
Ah, a negative lyme test (don't accept it). It has a considerable false negative rate which means it's almost useless for that reason plus it only tests one form of lyme. You might want to read Cure Unknown (Weintraub).
-------------------- --Keep an open mind about everything. Also, remember to visit ACTIVISM (we can change things together). Posts: 5418 | From earth | Registered: Mar 2011
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
My first two were negative...absoulute is antibody to it . And elisa is worthless..a western blot is only cdc positive if so many bands show up...also a immune response.
I confirmed with igenix and microscopy (blood on a slide) you can see them ..check area for live blood and check out thread here . My family is from big bend and my step dad and i share a lot of symptoms too
if it doesnt make sense. Its usually lyme..you can get antibiotics to see if the hrlp..careful with the fq and sulfas. Do not stop it took me 32 doctors...watch 'under our skin ' documentary and it will make sense...dr dave martz test was negative 3 times
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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bluelyme
Frequent Contributor (1K+ posts)
Member # 47170
posted
Chinese cats claw helped some with twitching. Samento banderol and teasel and hdvc iv helped bring it out into the open.
also justinandcristie on u toob has good storie of what we mayve facing..there are many ways to treat ..there is no silver bullet but silver may help.
-------------------- Blue Posts: 1539 | From southwest | Registered: Dec 2015
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