Topic: Any Tips on dealing w/ MCS, Startle Reflex and Spacial Issues?
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Lyme family >>>>>,
Some symptoms and issues that have been only minor,are suddenly worsening for me.
Trying to figure out how to ease them,and/or at least work around them.
MCS, I've had minor issues before,but this is sudden worsening. Occasionally a strong smelling perfume,or cleaning chemical would get to me,
...now it's like getting a pine tree thrown in my face,and bouquets of overly perfumey smelling flowers sprayed w/ strong smelling air fresheners. I end up hoarse w/ a raspy voice and feeling 'sinusy' and worn out.
The Startle reflex and Spatial issues [there's probably a name for it all, can't remember], I am having hearing impairment issues ,and my right eye- lower right corner doesn't see things/people coming up beside me.
Since the Nov.11, Myoclonus seizure like situation I had, the problems have worsened significantly. TxCoord has noticed it, and I know it is way worse too.
I will be seeing my non-LLMD Dr. just after Christmas. Because of financial issues we are very limited. Any ideas what I might do,besides hide in the house??
Lyme and Co's have stolen so much from me,and I don't want to become a total reclusive hermit. Right now, I am trying to limit myself to say three outings a month.
I'm not sure I dare try anymore outings where there's more than a small group of people,after a recent issues. between hearing,lights,and eye- sight/spatial issues. It is actually a bit scarey for me now.
Still researching info' here, and hoping for more tho'ts and ideas that may help. Beginning to feel like,wearing a sign... 'do not approach from my right side w/o warning me'...
And maybe a sign that says: " Warning, I may answer strangely or not answer, if you speak to me, or if I seem to answer when you weren't speaking to me please just smile, and don't think ill of me. I seem to be having some cognitive,hearing,and sight difficulties .".
Aarghhh... it's like my brain got to much input,and i just cannot handle it all.
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
| IP: Logged |
posted
For the MCS sensitivity, my LLMD told me just to keep going with FIR sauna detoxing, and it worked. I did it once a week for 6 months and suddenly I could be around smells again. He said it takes awhile to lower the toxin burden through sweating it out, and one day we'll be below the threshold.
Posts: 13116 | From San Francisco | Registered: May 2006
| IP: Logged |
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hi <<<<< Robin' >>>>>,
Thanks for the info', perhaps at a later date I can find someone with the FIR, had friends that used a form of FIR,but they moved out to Oregon, and we are in LV NV now. Finances are a huge issue for us.
Moved here because of TxCoords medical problems and a VA hopsital that's only 20 minutes away instead of three and a half hours. Plus it is way warmer than Pocatello ID [or anywhere in ID].
Wish I had access to FIR, friends little machine helped heal a cyst that three rounds of ABX wasn't helping. Dr. was talking about surgery,but the far infared helped [this was before we knew about the LD and Co's.
Thanks again for the info'!!!
Jus' Silverwolfi
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
| IP: Logged |
Silverwolf
Frequent Contributor (1K+ posts)
Member # 9196
posted
Hello again,
Tho' I don't have access to the FIR, when the weather warms back up we'll be back out on the front porch baking in it.
It gets really hot here, right now tho' we might actually get 'freezing' weather. It evidently snowed the winter before we came, but it melts off quickly, and hopefully the hot weather will come again in spring.
Cold weather is painful for both TxC' and I now.
Still searching for ideas to ease the issues, maybe get into some remission...
Jus' Silverwolfi here
-------------------- 2006,May-August2006 Dx w/ Lyme/Bartonella/White Matter Lesion Disease on Brain. [ Clinical Dx w/ two positives and several IND's on the tests from Igenex ], Prior Dx of CFIDS/CEBV 1992, and FMS '93-'94 Diabetes*2 Dx 10/'08 Posts: 3581 | From SE Idaho | Registered: May 2006
| IP: Logged |
The Lyme Disease Network is a non-profit organization funded by individual donations. If you would like to support the Network and the LymeNet system of Web services, please send your donations to:
The
Lyme Disease Network of New Jersey 907 Pebble Creek Court,
Pennington,
NJ08534USA http://www.lymenet.org/
UBBFriend: Email this page to someone!
Printer-friendly view of this topic