posted
In summer of 2005 I had gone camping near Mt St Helen's forest for a few days.
28 days later I had chills and fever and aches, then a few days later I developed large oval red rings (outer edged) then a lighter red and finally deeper red center.. They ranged from 3 inches to the largest of 10 inches. The one on my forearm was bruising. ( I look back on it now and think maybe this was the bite sight> But I NEVER saw any tick)Also My joints were very achy.
I had thought it was a reaction to a spider bite (because our house was teaming with them). So I didn't go into the doctor.
The rash stuck around for some time. It disappeared and so did my symptoms.
Well about summer 2006 I started having some weird symptoms, like heat sensitivity and random twitches. I didn't think much about this again.
Now for the last 4- 5 months I have developed symptoms that are steadily increasing and getting worse:
Numbness:
complete numbness in left pinky, and ring finger that extends to the heal of hand.
Involuntary Movement:
involuntary movement of middle & pointer fingers.
random spasms in all areas of the body - mostly in: left hand, both arms, face, both legs,upper thighs, lips and jaw line,(mainly on left side) lower & upper abdominal , lower back. sensation is like little needle sensations, with erratic spasms .
it used to be confined to the left side but now it is frequently on the right - when I have them on the I start to get sensations of a comb of sharp needles or tiny electrical shock (It feels painful) that scratches my skin in random areas a few seconds at a time.
I have had nights where my whole body tremors at once when I am sleeping.
spasms on my right side under my tongue and chin - coupled with facial twitch in cheek.
now involuntary twitch in right hand - thumb. spasms in top of left foot.
numbness is starting to take over on right side of hand now. eyelids have started to twitch regularly.
weakness:
weakness in my left hand, feeling a little weaker in right hand
Pain:
dull ache in arm below the inside elbow area. my chest feels heavy and I feel pain on the outer shoulder blade area.
dull pulsating ache in crook of hand.
before I have the abdominal cramping I notice my left hand will feel as if it (as if I had gotten burned with oil / or something extremely hot ,and now it is starting to blister) blistered - all over my hand deep into the tissues. then I get achy dull pain in my forearms, that spreads to my elbows and I feel pulsating dull ache in my neck on the right side and base of skull
The spasms in abdominals are very painful - I feel overfull and dull cramping - tons of tiny little pulses and areas of cramping - I get sick to my stomach.
I feel migraine headaches in the back of my head at the base of my skull, and at the sides of my head.
I get these pains that feel like a dull knife is being inserted into my joints at random times - I feel it in my knees. wrists, shoulders
pain in my right front of forehead - dull ache, migraine
pain in right abdominal
dull ache in right big toe, throbbing. Also coupled with tooth pain and pain in left forearm.
left roof of mouth feels dull achy. dull achyness in left knee and right knuckles / thumb -pulsates that alternates with stabbing pain.
stabbing ache in outer right wrist radiating to muddle and ring fingers, pain in armpit
I feel like my right wrist, and left pinky are being squeezed very tightly , as if in a blood cuff and it is painful - it only lasts a few minutes at a time.
frequency of lower pelvic pain on right side - radiating to anus. pain during intercourse.
frequent headaches on right side of head with pain extending down right side of neck. dull ache and pressure in front of head & behind eye. Dull pressure achy on right side of head. -stabbing sensation like knife being directed into skull in bursts -
achyness in arms and legs, feel heavy.
pain in my right temple and at same time stabbing below my left ear. - I get a cold sensation at the base of my neck and down my arms.
Now headaches are between my eyes and behind the eyes - pressure and pain.
MISC metallic taste in mouth.
sometimes things taste like soap.
some common foods taste different. I can strongly taste baking powder - very pronounced but can't taste other flavors, like usual.
cold feeling on left leg radiating from knee, coupled with ins and needles on right side. cold feeling in left eye - as if being blown with cold air.
pressure in right chest.
See little prisms of light in right eye.
have been dropping things. Misspelling words. Not able to concentrate as well.
------------------------ I started searching for symptoms, then looked at pictures of the lyme rashes and I was like OMG that was what I had --- now I am really scared because I left it untreated!
--> I want to make sure that this is ruled out.
Posts: 2 | From Oregon | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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[Edited to add after I wrote note below: I searched your history and see you have posted for seeking a doctor in that forum - for Eugene. - the Oregon Lyme Network should connect you with other patients from your area if you contact them.
I also see that Betty G replied to your other post with her usual great welcoming info.]
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There are no LLMDs in Oregon and the official word of the Oregon Medical Board is that lyme does not happen in Oregon - or if it did - it "burns itself out in 3 weeks" with or without medicine. (I can't tell you how many doctors told me that.)
Doctors in Oregon would probably never consider other tick-borne disease, either. You need evaluation for all of that, too.
There may be a few lyme friendly doctors who will treat patients, but as their GP, not as the lyme expert.
==
You should contact the OREGON LYME NETWORK and connect with people there as to what your treatment options might be.
Whether you have insurance or not, Costco may be a good place to get prescriptions - you do NOT have to be a member to use the pharmacy. they have an on-line site, too.
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Whatever you do, I hope you can find a doctor who is familiar with ILADS' research. As you read on, I can see that this might be very hard to read. Take a break if you need to and come back to it.
I would not try to convince any doctor in your state of anything, however. It's too much work and, even if they understand it all, there have been several doctors who lost their licenses in Oregon for treating "chronic" lyme.
I will add a few random thoughts, based upon my experience:
The rashes you had certainly could have been lyme (Bb).
The spasms, too, are frequent with lyme . . . they might be lessened with magnesium.
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Along the line of self-care: be sure you don't have any aspartame/Nutrasweet/Equal in ANYTHING you take, even breath mints. Avoid all forms of MSG as well (you'll have to google for the various names). It's in a lot of canned tuna -
and canned tune should be avoided as it's high in mercury (which you should also have tested).
Avoid alcohol and all processed foods.
Aspartame, MSG, mercury and alcohol can all make this much worse in many ways.
Eat healthfully - and don't go too long without food.
Get as good sleep as you can.
Rest frequently and avoid over stimulation. Exercise only gently - but do try to move to get circulation going and help motor skills.
Whatever this is, the best self-care you have the better chance you have. This may or may not be lyme. But, given the rash and symptoms, you need to see an expert and be evaluated for lyme and co-infections. A good LLMD or LLND will also consider other dx as well.
I wish you luck and hope you can connect with the lyme support group. I don't know what part of the state you are in, but the one in Portland meets twice a month on Sun. at Good Sam in NW PDX.
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dx - diagnosis
tx - treatment/therapy
sx - symptoms (here - that might mean something else to others, I'd not put in on a list for your med. chart)
abx - antibiotics
LLMD - see article I'll post below in a few minutes.
LLND - if you live in Oregon, you are probably familiar with ND's.
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Be sure to look at all the NEWBIE links above in the medical forum.
CONTROVERSY CONTINUES TO FUEL THE "LYME WAR" By Virginia Savely, RN, FNP-C
***** As two medical societies battle over its diagnosis and treatment, Lyme disease remains a frequently missed illness. Here is how to spot and treat it.
Excerpts:
" . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
`` . . .Patients with Lyme disease almost always have negative results on standard blood screening tests and have no remarkable findings on physical exam, so they are frequently referred to mental-health professionals for evaluation.
"...If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided..."
. . . * Clinicians do not realize that the CDC has gone on record as saying the commercial Lyme tests are designed for epidemiologic rather than diagnostic purposes, and a diagnosis should be based on clinical presentation rather than serologic results.
Attorney General Richard Blumenthal today announced that his antitrust investigation has uncovered serious flaws in the Infectious Diseases Society of America's (IDSA) process for writing its 2006 Lyme disease guidelines and the IDSA has agreed to reassess them with the assistance of an outside arbiter.
Lyme Disease: The Great Imitator Lyme disease can masquerade as a host of psychiatric ills, confounding doctors and driving patients to question their very sanity.
Psychology Today Magazine, May/Jun 2008
By: Pamela Weintraub
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Regarding the neurological issues you describe, this article (below) holds good information. Don't freak out that she discusses MS. MS is often a group of symptoms with an underlying cause that - often - turns out to be lyme.
Not that all cases progress, but it seems that you might consult a neurologist and if you do, you should have this article under your belt so that you are aware.
However, I would caution against seeing any neurologist who does not come highly recommended by another lyme patient or by an LLMD. In the experience of most patients, otherwise, they just don't have the expertise or the open mind to see beyond what they were taught in med school (and med school does not teach about lyme in detail).
Note that, often, with proper treatment, even some very serious symptoms can resolve.
I don't want to paint a dim picture. I think you know the seriousness of this and the need to find treatment.
It's not easy. But it is possible. And many have gotten better.
May 2008 Volume 39 Number 5 LABMEDICINE www.labmedicine.com - American Society for Clinical Pathology
CHRONIC BACTERIAL AND VIRAL INFECTIONS IN NEURODENERATIVE AND NEUROBAVIORAL DISEASES
- by Garth Nicolson, Ph.D.
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Wild Condor has a great site - I'll be back with link, but it's also probably in the NEWBIE links
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I'd suggest reading a few books from Amazon - there is a link to the left of this page. You can read customer reviews, too. Just copy and past the lines here:
Singleton, The Lyme Disease Solution
Buhner, Healing Lyme
Zhang, Lyme Disease and Modern Chinese Medicine
Schaller, Babesia (there are several books)
(there are others, but IMO, these are the ones to begin with regarding finding treatment and weighing options.)
Of course, keeping in mind the Treatment Guidelines from www.ilads.org as noted in a post above.
lymebytes
Frequent Contributor (1K+ posts)
Member # 11830
posted
Hi Welcome,
Well you found the right place, look no further.
Most of us are left untreated. Three reasons...one we didn't know any better when bitten, 2 - never knew we were bitten, 3 - doctor's blow us off anyway if we tell them we think it's lyme.
So usually by the time someone figures out it is LD - we are pretty far down the road, months, years, decades.
Read my story (link at bottom of my post) we have had a lot of the same symptoms, there are other stories and lots of LD info there too.
First you need to see a Lyme literate MD and start treatment. A lyme literate MD may want to tests through Igenex, especially for co-infections - other diseases ticks carry, over 60% of us have more than Lyme Disease. Treating co-infections is important.
You will likely have to travel to California to see an LLMD (or possibly Washington) If you need help finding an LLMD in CA, p/m me and I can help you.
posted
You have many classic symptoms of Lyme and co-infections. Night sweats are a classic sign of babesia another tick borne infection you can get from a single tick bite.
Also most people are asymptomatic for Lyme..... then WHAM they get sick, but often never connect the dots to an old tick bite. You are fortunate in that matter.
There is a LLMD Natropath in Tigard, OR that tests and treats with both natural and antibiotics. Also a good LLMD in Seattle. You can ask or check under seeking a Dr in this Forum.
You need to get to a Lyme Literate Medical Doctor and get proper Dx and treatment. I would highly suspect co-infections as well. Search this board for more info.
Also get a copy of Pam Weintraub's new book Cure Unknown. You will learn more about Lyme and all the issues involved. It is not an easy one.
-------------------- Positive 10 bands WB IGG & IGM + Babesia + Bartonolla and NOW RMSF 3/5/09 all at Quest
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