posted
Jenny, in my NON-medical opinion; yes, I feel he has lyme disease. Read the symptoms thread also.
You mentioned bugs inside him/you; do a search on MORGELLON's disease. There are several here who have this. Biting Back is one of the posters; she even shows photos of these things inside the body!
Welcome to this 24/7 LYME support group board! Here's TREEPATROL's and Tincup's combination newbie links.
Print off the links then check them off as you read as you could spend several months reading all of this.
print & read Dr. Barrascono's 2005 info first; you will come back to this often.
Extensive info in Treepatrol's newbie links about the meaning of WESTERN BLOT IGM/IGG test results from Igenex! Be sure to read or print this info IF Igenex tested you ok!
Also, see Cheryl's extensive web sites on: LD DIAGNOSIS, SYMPTOMS, & TREATMENT ... wonderful! Read the area on CO-INFECTIONS! You could have from 1-12 other illnesses that tick is carrying...lyme, malaria, etc.
If you are showing symptoms of co-infections, I would like to suggest being tested for co-infections when you have LYME western blots done. It isn't cheap!! But if you are positive, you can treat the co-infections first, and then work on LYME symptoms.
EYE SENSITIVIES & NOIR, no infrared sunglasses info., 2-28-06 updated
YES, I have what you have! Are you on doxy too? That made my extreme eyes 200% MORE sensitive than they we were earlier. I learned a lot about eye sensitivity/lighting on www.marshallprotocol.com board. Look for AUSSIE BARB'S EAST FINDER and then eyes/sunglasses, etc. Wealth of info there.
You will need 2% amber and 10% amber ... Style no. 901 and 910. 1-800-521-9746 TOLL- FREE
mention you have lyme and marshall protocol, they will give you 20% off! Also they have been kind enough to replace the SCRATCHED LENSES & BROKEN BOWS! How's that for service?
I don't drive often at night, but I can wear NOIR's 901 lenses at night while driving; it creates soft candle lights coming at me...tolerable. NOT to wear in town with all the action of people crossing where they shouldn't be, etc.
from LOU to Betty on LONG web links and Thank You Lou!: "If you hit the return key in the middle of a link, I don't think it will be clickable anymore. An alternative that maybe Betty should be telling people about is the tiny url website. I have it on my tool bar at the top of the page and use it for those incredablylongwebsiteaddresses.
All you have to do is ask tiny url to produce a short version, which it will do with a unique address, which you then use instead in your post. Works just the same when clicked! Here is the website, spread the word!
3-1-06, fyi, I tried dragging tinyurl to my toolbar without success, so that's why I currently have LONG addresses vs. short tiny ones! I'll keep trying.
posted
Jenny, have you had a full neuro work-up? MRI's of the brain etc.....I think if these are normal then there's a good chance of it being lyme.
Posts: 340 | From Ohio | Registered: Oct 2005
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posted
I have not had any MRI. When this all started I had my thyroid, metabolic, CBC, CMV, and EBV checked, the EBV came back as a reactivated infection, at that time I had no symptoms of mono, just nausea that lasted 3 months, it was horrible. Had upper GI, hepatibiliary scan. I forgot to add yesterday that before that nausea and panic attacks started, I was having tingling on the left side of my face, I never had any numbness with this besides when I started seeing big black spots one night, and panicked then ly arm and side of face went numb, lasted maybe 8-10 minutes, then 3 months of nausea, about 2 months after nausea left, I started getting the little zaps under my skin and crawlies everywhere, Its been downhill since then, I never had medical insurance when the buzzing started so I never had a MRI done, I'm very scared that I'm going to end up in a wheelchair or blind, especially from MS. This has totally uprooted my life, I think about it all the time, I never knew until recently that Lyme can cause this stuff, Kinda think that MS would act a little differently, I know alot of people with MS, their symptoms aren't like mine, they leave and come back , mine is their all the time. What do you guys think I should do, go to neuro or LLMD? Just seems weird that alot of my symptoms are piling up as the years go by. Thank you, and have a great Sunday!
Posts: 21 | From Pittsburgh, PA. | Registered: Mar 2006
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bettyg
Unregistered
posted
breaking this up for us neuro lymies to read...
Jenny, please hit enter often & double space between paragraphs so we neuro lymies can read ok! Thanks on our behalf.
quote:Originally posted by Jenny R.:
I have not had any MRI.
When this all started I had my thyroid, metabolic, CBC, CMV, and EBV checked,
the EBV came back as a reactivated infection, at that time I had no symptoms of mono,
just nausea that lasted 3 months, it was horrible.
Had upper GI, hepatibiliary scan. I forgot to add yesterday that before that nausea and panic attacks started,
I was having tingling on the left side of my face, I never had any numbness with this besides
when I started seeing big black spots one night,
and panicked then ly arm and side of face went numb, lasted maybe 8-10 minutes,
then 3 months of nausea, about 2 months after nausea left,
I started getting the little zaps under my skin and crawlies everywhere, Its been downhill since then,
I never had medical insurance when the buzzing started so I never had a MRI done,
I'm very scared that I'm going to end up in a wheelchair or blind, especially from MS.
This has totally uprooted my life, I think about it all the time, I never knew until recently that Lyme can cause this stuff,
Kinda think that MS would act a little differently, I know alot of people with MS, their symptoms aren't like mine, they leave and come back , mine is their all the time.
What do you guys think I should do, go to neuro or LLMD ?
Just seems weird that alot of my symptoms are piling up as the years go by. Thank you, and have a great Sunday!
Definitely go to a LLMD! go to left hand column, support groups for your state; email or call a support group leader.
go to seeking dr. section; post for your state and city; others will answer IF they think to check this section.
Jenny, also plesae add some periods to the end of your sentences; was hard to figure out where many started/stopped since you use a continued commas. Thanks so much. Remember, hit the ENTER button more.
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
I think you should go to a llmd.
If it is lyme they will diagnose you and treat you properly.
If it something else they can identify that too.
LLMDs are regular drs. they can diagnose other things.
But if you do have lyme then they are the only ones who are going to give you adequate and appropriate treatment.
posted
Jenny, I have symptoms similar to yours. I had the full neuro work-up with MRI's, EMG, evoked potentials etc...it all came back negative.
I too fear MS. I am being treated for lyme right now. I agree about the symptoms not being like typical MS. Everyone I know who has it has normal periods with relapses. My symptoms never go away either. They do change from day to day though.
The neuro work up was good for me to know I have no lesions anywhere. I wanted to rule everything else out before seeing the llmd. However, the tests are quite expensive so not having insurance is a huge issue.
As it turns out, I should have just gone to the llmd to begin with instead of wasting valuable time and money.
Posts: 340 | From Ohio | Registered: Oct 2005
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Does the medication seem to be helping? I would love to have one day go by when I could feel the way I used to.
I am going to PC in a few weeks, going to ask him about some bloodwork, maybe check Thyroid.
My leg symptoms are strange, they do not have the crawlies, and cold sensations when I stand, only when I sit, and only when I sit with pants on, shorts don't bother it.
As far as my facial thing, It is worse by movement, when I turn a certain way, it makes it tingly feeling near my jaw and up the side of my face. This used to be just every now and then, now 6 years later it's there almost always.
I'm scared. I just want to be back to my old self.
Posts: 21 | From Pittsburgh, PA. | Registered: Mar 2006
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posted
Jenny, Yes, my legs don't feel as weak as they did. I have been able to walk my dog in the woods several times in the past 2 weeks. I haven't been able to do this in 9 months.
Some things aren't better or are worse. I have developed unbelievable insomnia since I started my treatment. My neck, shoulders, arms hurt very badly ? herx. I can hardly lift my arms over my head, especially in the morning. My balance has been off the past couple weeks. I'm hot and break out in sweats.
I've only been on treatment for a month.
There are a couple llmd's in your area. Mine is in Pa also. you may not get very far with your pcp.
Patti
Posts: 340 | From Ohio | Registered: Oct 2005
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posted
Hi Patti, Is your LLMD in Hermitage, Pa? That seems to be the one everyone in my area sees. . About how much is the Western Blot test? I am guessing from all this reading that insurances don't cover this. How long have you had symptoms before they found out what it was? Thanks!
[ 04. April 2006, 11:11 AM: Message edited by: Jenny R. ]
Posts: 21 | From Pittsburgh, PA. | Registered: Mar 2006
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posted
PattiLynn Sorry about using names, forgot, I forget alot of things lately. I am in the process of getting insurance, I should get my insurance cards and packet within the next week. All of this weird stuff is all starting to make sense to me now. All of it started I'm figuring around 1998, and then the really weird stuff (neuro) since 2001, I know this is weird to say, but I hope it's nothing really terrible, and maybe I can get to the bottom of this and start feeling better. My brother-in-law had Lyme his ears swelled so bad that the skin behind them tore, he contracted it after a hunting trip to Maine. I did get bit with something 2 times before this all started but I never had a rash, although I was sick each time, the second time was on my arm, but it was a big brownish colored bug that landed on my arm while cutting grass and I hurried up and hit it off my arm, but it still got me, my arm swelled twice the size and I was unable to bend it for about 2 weeks, the first time I just remember being itchy near my lower back after sitting in the yard, clearing some old trees away, my lymph nodes in my groin swelled really bad. As the years gone by the things have gotten worse, now I forget things alot, and I feel like my head is to big for my shoulders, the floaters are real bad in my left eye, pants drive my legs crazy, and the jaw pressure/facial pressure and tingling is everyday. I think I'm going to talk to my PC and have him refer me to a LLMD. Thank you again, your help is very appreciated. As far as the other LLMD that was his name I received also from someone else. Thanks again!
Posts: 21 | From Pittsburgh, PA. | Registered: Mar 2006
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posted
Patti, sorry forgot to add to the previous post, The tests that you said he had you do before you even seenhim, was that cost that you quoted just for bloodwork? Do you remember what all it covered? Thanks!
Posts: 21 | From Pittsburgh, PA. | Registered: Mar 2006
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posted
Just a couple more questions I keep forgetting
When they say chemical sensitivies, Does chemical exposure make symptoms worse? Or not.
I clean house for a living, and when I'm not using cleaning stuff, I've noticed my symptoms are not as bad. Don't know, just started noticing that about 6 months ago.
The alcohol thing: Does alcohol make symptoms worse? My husband and I went to dinner the other night and I started getting muscle spasms in my shoulders and chest, they lasted about 5 minutes, and half way through the 16 oz beer I was drunk, my husband finished it.
What about hair? Does anyone notice that when they color their hair it does not take as well as it should? This is very weird, the last 3 times I had my hair colored it seemed not to have worked.
I'm sorry guys, for all the questions, Maybe I'm just over-reacting, maybe not. I just need some answers, this is driving me NUTS!
Thank you in advance, you people here are great!
Posts: 21 | From Pittsburgh, PA. | Registered: Mar 2006
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posted
Jenny, I agree with others on this site. Go see an LLMD. Get a Western Blot, not a Bowen or Elisa. Make sure the lab is Igenex. (Some others here may have other good labs -- I think I've read some. Igenex is what my LLMD uses.)
Chemical sensitivies is a separate issue. It came come along with Lyme. Many of us have these. I think we also become more sensitive because our immune systems are compromised. All those cleaning supplies could be extremely toxic to you. You could do a test -- one by one, see if each one causes a reaction. We use mild and organic cleaners we get at Whole Foods. Perfumes and smells can send some people with chemical sensitivity into severe illness episodes.
Alcohol per se is someting we all avoid. It's too hard on the liver, with the abx.
The hair thing, I don't know. My daughter with Lyme has her hair falling out.
I know how you feel at this stage and I wish you all the best. If it is Lyme, you have a long road ahead of you with all kinds of weird symptoms coming and going and ligering. I wish I had known about the seriousness of some of these herx. It scared the heck out of me to develop severe symptoms out of the blue.
-------------------- Jeff Posts: 533 | From CA | Registered: Mar 2006
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posted
One of my "I think there is something wrong with me" problems was bleaching my hair.
I bleached my hair and it had a chemical reaction that caused my hair to matte into one big dreadlock. I had to go to a salon and have people pour oil and work on it for hours.
The texture was permanently altered to be a magnent for other follicles. I didn't bleach for 1/2 a year.
And then it happened again.
And again.
Posts: 243 | From chicago | Registered: Dec 2005
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Ditto what the others said...
see a lyme literate dr.
As for the alchol...
I personally don't drink a drop.
My poor liver has enough to deal with (all the meds I take)
Find a llmd as soon as possible. If you have lyme and are improperly treated...
well it makes recovery much harder...
and it is hard enough to recover from this disese if you have a good llmd.
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