posted
Sorry for the really long post. . . I just had to get this all down. . .
A little background on me. Had two deer tick bites that I know of over the last 7 or so years. Have lived on and spent time on Cape Cod, MA. No rash. Looked like a few little tiny red bumps near the seond bite (don't remember anything from the first one). Haven't felt well for the last three years. It started when I moved and started a new job- really stressfull.
Semmed like I was having constant sinus infections and headaches, but not much nasty goop in my sinuses stc. Couple short periods of time I was on Amoxicillan for sinus issues, and then Cipro for "colitis" and sore abdomen.
Saw multiple doctors, got multiple bloodwork/tests for anythign that would show up. 3 negative ELISAs. Finally seeing a LLMD and he says clinically my symptoms fit Lyme pretty well. Had a Western Blot done by Quest after the first 2 weeks on antibiotics, only 41K band showed up. At some point I probably will go with Igenex.
Somehow I managed to work fulltime over the last 3 years, throughout the time I wasn't feeling well. I feel a little better the last 6 months or so. Antibiotics are helping. My good days are much better. My bad days fluctuate in intensity and really haven't changed all that much.
I'm currently though 2.5 months of 3 month period of 750mg teracycline twice a day. I take Klaire Labs probiotics,drink some Kombucha, Samento/Cat's Claw, took a few Artemesinin a few months back- like a bomb went off- scared to try it again. I just started some Japanese Knotweed.
After getting some treatment, in terms of symptoms, I have started to see a vague monthly pattern and I have always had a vague weekly pattern as well seems like. Any one else have a weekly pattern?
I'm hoping that the next test will show more. Or that when I go back to the LLMD with my symptoms during antibiotics, it will look even more like Lyme.
I've done as much reading as I can about Lyme, Co-infections, Marshall Protocol, herbs.
I tend to get headaches,"sinus infections", balance issues, neck/shoulder stiffness- neck electrical feeling, jaw tightness, food sensativities and changes in bowel habits, lethargic, joint aches fingers- elbows- knees, brain fog, tired legs, cold body, word mixups, short term memory issues, motivation less etc., etc.
At first I had a lot of sinus and headaches and was just really tired. It was like that for the first two years, now I'm not as run down as I used to be.
Wondering if anyone could share their thoughts on they specific symptoms below. any bit of personal experience would be helpful. I've had all kinds of symptoms, but these are just a few of the ones that I find unique.
Gluten/Dairy/Sugar: At first thought I was Gluten intolerant, symptoms got a little better after eliminating gluten, dairy, and excess sugar. Had loose stools and fat slicks in toilet water for the first 2 years or so.
Vitamin D: High Billirubin and low Vitamin D, the only things to look really abnormal in all the testing. If I take vitamin D makes me feel a little better for a bit then it makes me feek terrible. Sun can do this too sometimes.
Chemical Sensititivities/Very Acute Sense of Smell: This is one of the worst for me. Since being on antibiotics, now I can definitely see it comes and goes. Where as before it seemed like an all the time thing. Toxic feeling along with acute smell for chemicals, cleaning products like Fantastic, mothballs, dryer sheets, MOLD, damp ares, perfume, cigarette smoke, airfresheners, newspapers, etc. Makes me think it's all connected- liver, environmental toxins, lyme/etc. toxins. I can sense "stale air" and it really bothers my body/me.
Neck Stiffness/Shoulder Stiffness with ome TMJ Type Stuff: This is another common symptom for me. Comes and goes. Lasts for parts of days, days, seems like weeks at a time. Creaks/cracks.
ELECTRIC SENSATION WHEN FLEXING CHIN DOWN- travels from top of neck down to middle of back, sometimes thighs/heels as well. I have had this off and on, but notice it during and after "inadequate" antibiotic treatment in the past and also at during the first three weeks or so of my Tetracycline. I FIND THIS TO BE ONE OF MY MOST INTRIGUING SYMPTOMS. DEFINITELY MAKES ME THINK LYME and LYME'S INTERACTION WITH ANTIBIOTICS.
Zips and zaps, muscle twitches, little firework tiwtches, certain locations skin crawling. The zips and the zaps, the internal buzzing, the muscle twitches, and the low vibrating pager feelings started more so while on antibiotics. Mostly in legs and torso. Lots of heel buzzing while on antibiotics. Before antibiotics it was more generalized tingling and limb tiredness and face and teeth buzzing.
Cold Body, expecially in winter or in cold rooms. Sometimes only a hot shower or wearing longjons all the time will help. Cold hands and feet, sludgy/purple looking hands, low body temperature, mouth readings range from 95 degrees to occasionally 97/97.5 degress.
Catching No Colds: Over the last few years I think I've technically only had a cold maybe once, even though the majority of the time I feel like crud. I hear of a lot of people with Lyme having infection after infection or cold after cold. Are there people at the other end of the spectrum? No Colds?
Faint malar looking cheek rash? Sun or not?
Any one else get little eye orbs/snowy vision that float around, they are worse when I feel worse? Sometimes I think I see things out fo the corner of my eye, or I see something that sort of moves but it really doesn't.
Again sorry for all the "stuff" just trying to see how many people have some similar symptoms.
I will check back next week, after the weekend. Thanks again.
[ 28. May 2008, 06:02 AM: Message edited by: luckeeluke ]
Posts: 15 | From Mass. | Registered: Oct 2007
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AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
Gluten/Dairy/Sugar: At first thought I was Gluten intolerant, symptoms got a little better after eliminating gluten, dairy, and excess sugar. Had loose stools and fat slicks in toilet water for the first 2 years or so.
- these are the things i have to avoid to avoid creating yeast problems
Vitamin D: High Billirubin and low Vitamin D, the only things to look really abnormal in all the testing. If I take vitamin D makes me feel a little better for a bit then it makes me feek terrible. Sun can do this too sometimes.
- my vitamin d was low. Before i was diagnosed my liver enzymes did spike for an "unknown" reason.
Chemical Sensititivities/Very Acute Sense of Smell: This is one of the worst for me. Since being on antibiotics, now I can definitely see it comes and goes. Where as before it seemed like an all the time thing. Toxic feeling along with acute smell for chemicals, cleaning products like Fantastic, mothballs, dryer sheets, MOLD, damp ares, perfume, cigarette smoke, airfresheners, newspapers, etc. Makes me think it's all connected- liver, environmental toxins, lyme/etc. toxins. I can sense "stale air" and it really bothers my body/me.
- I have lyme/ babs/ and some yeast so i am not sure which is the culprit but i have this too if i walk by were someone was smoking i can smell it...it makes my head hurt and my chest pressure and shorthness of breath rtiggers immediately. I use natural odorless cleaners now. my mom had to stop wearing her perfume, her hairspray and paints her nails outside
Neck Stiffness/Shoulder Stiffness with ome TMJ Type Stuff: This is another common symptom for me. Comes and goes. Lasts for parts of days, days, seems like weeks at a time. Creaks/cracks.
I get the neck/spine pain. I snap crackle pop...every joint and my spine unless i have a ton of inflamation.
ELECTRIC SENSATION WHEN FLEXING CHIN DOWN- travels from top of neck down to middle of back, sometimes thighs/heels as well. I have had this off and on, but notice it during and after "inadequate" antibiotic treatment in the past and also at during the first three weeks or so of my Tetracycline. I FIND THIS TO BE ONE OF MY MOST INTRIGUING SYMPTOMS. DEFINITELY MAKES ME THINK LYME and LYME'S INTERACTION WITH ANTIBIOTICS.
I had sensations like that in my hand awhile ago. It was one of the weirder symptoms i have had. I think for me it is nerve related.
Zips and zaps, muscle twitches, little firework tiwtches, certain locations skin crawling. The zips and the zaps, the internal buzzing, the muscle twitches, and the low vibrating pager feelings started more so while on antibiotics. Mostly in legs and torso. Lots of heel buzzing while on antibiotics. Before antibiotics it was more generalized tingling and limb tiredness and face and teeth buzzing.
- I get random twitches here and there , can feel a "pulsing sensation" from time to time... i have constant tremors in my hands and arms which feel like machine gun(rapid fire) twitches. (my gut feeling is that for me my tremors are babs but thats just a guess.
Cold Body, expecially in winter or in cold rooms. Sometimes only a hot shower or wearing longjons all the time will help. Cold hands and feet, sludgy/purple looking hands, low body temperature, mouth readings range from 95 degrees to occasionally 97/97.5 degress.
I can't remember how to spell it but i think lyme can cause a rauynolds like syndrome ...actually i am sure i messed that spelling up hopefully a better speller will come allong
My temp used to be real low and has gotten back to normal. Lately my hands sometimes but my feet alot are cold to the touch although i dont always expereince them as cold...like oh my feet are cold i should put socks on type of thing... but if they touch my leg sometimes it feels like i had them in a bucket of ice water first.
Catching No Colds: Over the last few years I think I've technically only had a cold maybe once, even though the majority of the time I feel like crud. I hear of a lot of people with Lyme having infection after infection or cold after cold. Are there people at the other end of the spectrum? No Colds?
Most of my lyme life (which is actually the majority of my life ) i did not catch colds or flus. There was a couple years out of the 20 i have been sick with lyme that my immune system was weaker and i did catch whatever was around and sometimes twice... but mostly i didnt catch sickness (other than lyme/babs )
My theory is that i think from the point i got sick my immune system was turned "on". My immune system must have been turned on because i managed to live and do stuff for those first 13 years. I think that any virus/bacteria that tried to invade probally got caught in the crossfire. But this is just my opinion as a lyme patient.
AZURE WISH
Frequent Contributor (1K+ posts)
Member # 804
posted
the bomb going off with artesmisinin - was it a babs herx...
they are absolutely horrible. Babs herxes for me have been sooooo much worse than the lyme ones.
For me i think my babs symptoms are tremors,headaches, neck/spine pain,lightheaded, dizzy, weakness, digestive issues, balance/cordination issues, palpatations, fast heartrate , sweats,shortness of breath...
and maybe the chemical sensitives.
This is just my guess of what is what for me cuz i do have lyme and babs.
posted
I have pretty much all that above, with these differences:
I don't (as far as I know) have problems with dairy/gluten/sugar, BUT there was absolutely a period of a few months when I was seriously thinking IBS because of the tummy problems.
Vitamin D is not an issue with me (I don't think?)
The smells... well, not in the same sense you have problems. For me there are very specific smells I get raging headaches from.
Artificial blueberry is the most 'famous' one for my family because I banished 3 boxes of blueberry candy canes to the garbage about 3yr ago because of it! haha
I absolutely get the nexk stiffness and TMJ stuff, etc. Complete with creak/crackles. Right now my neck is stiff-ish and creaky/crackly and also my jaws feel so tired and sore.
I LOVE your "fireworks twitches" phrase. I call them "white lightnings". haha I don't have the electrical down my back thing, though. Just twitches all over of varying intensities. Also the white lightnings.
Oh, and then there's the humming and the stabbing pains and the extreme tiredness of certain areas. Moves all over, so I can't even predict which bit of me is about to be tired. ugg!
I don't have a cheek rash...I have acne instead. Face, sometimes neck, also shoulders, chest, upper back.
My oral readings tend to read 97.4-97.8, but sometimes goes as low as 96.4, and just a few min ago was 98.5...I run low-grade fevers sometimes. Guess I've got one now.
I stay cold most of the time and my hands and feet are ALWAYS cold. Sometimes it is just one hand or one foot, though, and used to (couple of years ago) that made me freak out thinking blood clot.
I try not to do that anymore, though, cause the dr at the ER basically just laughed me right out of there... WHY in the world was I worried about a blood clot, he wanted to know. I was all of 26.
I DON'T, however, get colds. =) Almost never. I don't seem to get whatever everyone else does most of the time, which is nice, but weird.
I have other stuff too...memory malfunction, can't-make-my-brain-think, emotional mess, anxiety, panic, real irritable, stuttering, word mix-ups,
I get lost way too easy (find myself in places I didn't think I was in), abdominal pain, migraine headaches, tingles, super-sensitive to light and some sounds, blurry vision at times,
and I know there are other things but I always have a hard time thinking/listing them because of the whole MEMORY thing. grrrrr!
My hubby calls me TwitchySmurf and says that I have the blood of a lizard...that's why I stay so cold. I justed tested IgM positive for Lyme through Igenex.
Posts: 155 | From Texas | Registered: Oct 2007
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bettyg
Unregistered
posted
....azure, it's RAYNAUD's or close to it; the blind teaching the blind ...
luke, i'm sending you a pm with my current newbie package which has a table of contents for 60-70% of it except ALL SSDI, disability insurance app info!
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posted
Most of your stuff I had except gluten intolerance.
I was struck by your mention of the malar rash, which I also had when I was most ill, and which is most often associated with lupus (which has been ruled out for me, and I'm sure for you).
Haven't seen anyone else mention the malar rash on this site.
Mine was more pronounced (a bit larger & darker color) on the left hand side, but definitely the full butterfly rash.
otm
Posts: 314 | From east coast | Registered: Oct 2007
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posted
I related to many of your symptoms, as I have most of them as well.
Gluten/Dairy/Sugar: Well, I am gluten intolerant. I eat it at times, but I just end up paying for it later (awful stomach cramps and malabsorption). Dairy is iffy..sometimes it is ok, sometimes not. Sugar..if I have a lot of it, I feel nauseous and dizzy, but a little bit of it is ok to balance my blood sugar/hypoglycemia issues.
Vitamin D: This is always on the floor for me..very low numbers. I was advised to supplement with D vitamins, but not sure how much is too much, and when I go out in the sun, I find that makes me feel worse.
Chemical Sensitivities: I feel sick when I smell gasoline, or very strong amber-y perfumes. My boyfriend smokes, and sometimes smelling it on him makes me feel nauseous as well, and the headaches begin.
Neck Stiffness: Yes, this comes up often..as if there is a permanent knot at the back of my neck I can't really get rid of.
Zips and Zaps: Sometimes when I am trying to sleep, I will get this electric-like zap in my body..makes my body jump, and then it goes away as quickly as it came on. I'm really not sure what that is, but it's a bit unsettling.
Cold body: This is one of my major symptoms. It seems that I am always cold..particularly my hands and feet. My temp. is always on the low side..and in the winter, it sometimes reaches 95 degrees, while a fever for me is 98.
Colds: I differed with you on this one. It seems I've had a cold ever since I became sick..just can't shake it..the immune system has basically been shot to hell.
Just a question--how is the Japanese Knotweed working out? I've always been curious about that, and read it is part of the Buhner Protocol, which I haven't tried yet.
Posts: 26 | From Ma. | Registered: Jul 2006
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posted
Sorry to hear of your health issues. I wont' go into too much detail BUT, what caught my eye was the no colds/flus.
I have Lyme, babs, bart and ehrlichia...infected, I think, about 4 years ago, diagnosed 2.5 months ago. I have not had any colds/flus at all during the last 4 years, even when my 3 kids and husband were sick.
I can totally relate to the buzzy, twitchy stuff - terrible - to the point of tremors - just a whacked out nervous system. This is my biggest complaint by far...I am just jumpy and the internal vibrations are awful.
Neck pain, yes, to the point of a large disc herniation, then surgery, with no improvement of symptoms...didn't address my underlying problem!
Anyway, I am glad you are going to see an LLMD, testing through IGeneX would be a good plan, hopefully after you stop antibiotics for a few weeks. Good luck and please keep us posted.
Posts: 566 | From West Coast | Registered: May 2008
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posted
I want to say thanks for all the replies . I plan on sitting down next week when I have a few moments and really digesting all the information. I will probably post up a couple of specific reponses/questions then.
Posts: 15 | From Mass. | Registered: Oct 2007
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posted
I'm hoping I can get some kind of confirmation of Lyme or co-infections in the next few months. I will get another Western Blot done for Lyme, maybe some co-infection tests as well. At some point I will get a IGENEX test done. I supspect Babesia too.
I had 3 Negative ELISAs. The Western Blot that I had from Quest, only the IGG 41K band showed up. It will be interesting to see after a few months of antibiotics whether any more bands show up.
I think this bacteria is very smart. I really think it is good at just hanging out in the body with its camoflauge on and releasing toxins. I think it really takes advantage of when your body gets stressed, tired, or enviornmentally challenged with chemicals, molds, or hard to digest foods like gluten, dairy, etc.
Sometimes my sypmtoms seem so environmentally related and change with different temperatures, dampness, and surroundings. I still have to say to people I don't know why I don't feel well. I have a hunch that it's Lyme and maybe a co-infection or two, but it's hard when you don't have the proof yet.
I've gone back and forth between daily mold exposure/chemical exposures at work or apartment, and Lyme. If the LLMD hadn't told me that clinically it is Lyme, I'm not sure where I would have gone from here.
[ 27. May 2008, 11:26 PM: Message edited by: luckeeluke ]
Posts: 15 | From Mass. | Registered: Oct 2007
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quote:Originally posted by Lymejul25: I related to many of your symptoms, as I have most of them as well. Just a question--how is the Japanese Knotweed working out? I've always been curious about that, and read it is part of the Buhner Protocol, which I haven't tried yet.
Maybe we both have a Mass. version of Lyme . I really do think there are different strains and different regional characteristics.
Japanese Knotweed- I have been just trying a little bit to start off. I bought some stuff from 1stChinese Herbs online and made my own capsuls. Only around quarter to half a capsule- just to see how my body reacts- make sure I'm not allergic to it etc. So at this point in time I really don't have any solid experience with it. I did feel like it was working along with the antibiotics. I felt a little worse.
I did read Bruhner's book- very informative for Lyme bacteria information as well as protocols. I've been trying out some things from that.
There are a few things that just seem to help are JT's Kombucha (couple sips settles my stomach down after antibiotics), Klaire Labs probiotics are good/powerful stuff(the 25 million/10 different strains). Sometimes there does feel like a war in my belly. I get this bloated belly thing happening sometimes. Candidase by Enzymeatic seems to help too.
I have been taking (Cat's Claw) Samento capsules/drops and Saventero capsules off and on since September. This is the one thing that has helped the most other than the antibiotics. I take a small amount. If I take too much I feel way worse. If I take just enough it takes the edge off of my symptoms.
[ 28. May 2008, 06:05 AM: Message edited by: luckeeluke ]
Posts: 15 | From Mass. | Registered: Oct 2007
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quote:Originally posted by AZURE WISH: the bomb going off with artesmisinin - was it a babs herx...
This was back in December I decided to try it out see if I could rule in or out Babesia. I only took Artemisinin (1/day 100mg capsule)for 3 days. That was enough. . . a bunch of symptoms can roaring back, some symptoms I hadn't had for a while- fever, sore throat, extreme sinus pressure absolutely toxic/flu feeling, dead to the world, felt like I had the flu x 10 by the second 100mg pill. I got so constipated and messed up after that it too me a while to get back on track.
I really do want to try a few more Artemisinin soon and see how it hits me.
So in answer to your question/thought- I'm not sure. It sure felt like what a Bab's herx could feel like. I don't THINK it was a reaction to the Artemisinin. Who knows?
[ 28. May 2008, 06:04 AM: Message edited by: luckeeluke ]
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Gluten/Dairy/Sugar: At first thought I was Gluten intolerant, symptoms got a little better after eliminating gluten, dairy, and excess sugar. Had loose stools and fat slicks in toilet water for the first 2 years or so.
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