Some questions here.... If this is Lyme disease that I possibly have, could the coinfection of bartonella be as serious in its late stages?
Also, have any of you had hyperreflexes, nystagmus, slurred speech, seizures, hand tremor, and muscles twitching? I have also found myself lost in big places,, (not at home), I went into a bathroom, and couldn't find my way out! Funny and scary at the same time! I can't stand loud noises, anyone else?
I am just curious what others have had or still have as you go through everyday life with lyme and coinfections.
Oh yeah, and.... rashes.... not bullseye, just rashes that appear behind the knees for no reason, on top of the hand for 3 yrs, and on top of shin .
Also, I have had foot pain in my right foot. Not horrible, but it feels like I need to crack the bone when I go to take a step. Anyone else get this?
Thanks for any input,, and I have a ton more questions , just don't want to make this post tooo long. LOL
slurred speech,tremors,and muscle twitching (fasticulations). I was afraid to leave my house or even go on our family vacation at the beach (for a week) Paranoid too. Rashes...yes. Ankle pain, shin pain and hot/cold sensativaties on my skin. Would also sweat uncontrollabe during the day and have night sweats. eye twitches and palsy like feelings in face. Tongue went numb. Throat sore to the point i went thru 3000 coughdrops. Yes, not a typo. 3000.
OMG,, Just last night, I had the night sweats. Woke up drenched, then was freezing cold. I put my hand on my husbands back, and he said, wow, it felt like you just put a heating pad on me. I have had night sweats quite a bit. I am on the small side 5'2 and 112 lbs so its not like I have alot of insulation on me, however, I burn up some nights and other nights my hands and feet are like ice cubes. It's so crazy. I tell everyone that my thermostat is broken so my body temp. will always be off.
I have had the cold spot on my left cheek and right forearm, feels strangely cold but to touch it ... it is warm.
I had a couple of weeks of a dry cough that only happened as soon as I got into bed to go to sleep. It was awful. I would cough and cough with no production but was very irritating. Never knew what was going on, but I felt like I had something stuck in my throat.
What do your rashes look like?
For 3 1/2 yrs, I had a left hand itch on the top of my hand. I scratched so hard I would bleed and open up cuts. It finally cleared up, but every now and then, if my hand is hot, or I am nervous it will start to itch. One night i was just lying in bed and my shins started to itch real bad and a rash was there. I did not eat anything that would have caused this, and did not change detergent, so it appeared for no reason. I also had the burning itch feet. I was outside sitting at my patio table and all of a sudden my feet felt very hot and itchy. I was rubbing them on a cold wet towel to soothe, but it continued for quite a while.
I could go on and on!!! Thanks for listing what you have been through. Do you still get these symptoms? How long have you been dx'd with lyme?
Talk to you soon,
Came down with symptoms Oct 29th, 2009. Diaged by IGENEX test Dec, 2010. Was using Marshall protocol (low dose Minocin, supplements) and talked to Dr Garth Nicolson again. He said the marshall protocol will not cure coinfections and Mycoplasmas. So I went to see Dr Jemsek from the movie "Under Our Skin" and have been doing his protocol for 2 months now. Very subsided symptoms, but sometimes I get that burning at base of skull and shoulders.
The night sweats are I believe the babesia infection. Literally I would be doing VERY LITTLE and be soaked.
my symptoms started suddenly, after the flu and mono had came and gone. muscle spasms, itching, rashes, involuntary movements of my neck, tremors in arms, legs, neck, tongue. my symptoms have been constant for almost nine months..i did have a little lessening of the twitching-spasms when i started taking Mg and potassium daily. i would suggest adding Mg to your supplement list asap. especially if it is Lyme disease.. they use it all up in their life cycle from all that i have read. i also get the hot/cold spots on my body..sometimes it feels like my skin is on fire, and other times it feels like ice cold water running down my legs..
So, about the foot thing, like u need to pop the joint or its going to break mid-step..lol oh yeah i get that, so i pop the side of my foot and it usually helps..i also get this almost like tearing of the muscle at the arches of my feet sometimes when i take a step. have you had any tests that you could give the results for?
This is all so interesting to me. I have been going through my life history and some things started to go off in my head, I have cysts on my left ovarie, and I have had a fibroid in my left breast as well, I read somewhere that some people get unexplained breast pain, I get it all the time. I needed to have the lump removed when I was 27 yrs. old. I have also read that these bugs or whatever they are called like to form into cysts and that's how they hide from being detected in the blood work.
I have had my tonsils out at 15 yrs. old because of recurring strept throat, I have read somewhere also that lyme can cause that.
For the past 20 something years, my glands would swell up near my left elbow and under left armpit. Everything that has been a problem for me has been on my left side of my body. I have had a gland in the crease of my left leg and the lump that was removed behind my ear from Cat Scratch fever, was also on the left.
Does lyme work this way? One sided more than the other?
At this time, I have to request my lab tests, in order to bring them with me to my LLMD.
Thank you, and I definately have more, but this was getting long enough. ! LOL
Don't worry about the length of the posts Pam, write what you feel is necessary.
Funny that you mentioned the Foot/ankle issue. My wifes boss (the rife one) has to do the same, she is also seeing a chiro for her neck.
Wow, when you pay attention to the symptoms and talk to more people you find a TON of people are infected.
We had a hurricane here and alot of trees down. I was talking to a tree expert and he stated that his sister thought she had Lyme, but she didnt.
She has been diaged with RA, MS, IBS, fibrous cysts, dysuria etc.
I told him to have her rechecked for Lymes. He thought I was crazy since the Dr said it was impossible since her test was negative. OK tthen...
I feel so welcomed from you guys to go on and on! I think with my situation I am in ... I have been bringing up Lyme to a lot of people's attention around here. One of my friend's "friend" has Lyme disease and when I mentioned to her about my upcoming appt. with the llmd she told me about what her friend has been going through. It felt so good to speak of it and she is well informed, she was happy about my appt.
She even told me that if I need her to drive me to the 4 hr. away appt. she would take the day off of work to bring me.
Then I went to get a haircut yesterday and my other longtime friend told me that when she was going to cut her son's hair, she found 3 ticks on him!!!! OMG!! I asked her if she had him checked and she said that he was ok she said she even saved the ticks and brought them in with her. I told her to keep a close eye on him and I mentioned how some tests are not always accurate,, of course I told her that I am not trying to scare her into thinking the worst, but he is 10 and I wanted her to know what I have been going through,,,,, she was very grateful to talk about it and I felt like I offered her some good websites to check out!!!!
Thinking back is useful. I've had some headaches on the left side lately. I can recall having them a lot in my teens. Once, the old guy at a local garage put a lot of pressure on my forehead with his hand, and it helped for awhile. I was probably 12 or 13 then. In many cases, I seem to be going through a reverse cycle of what I've been through in my teens. Can't wait for the tinnitus to go completely away, wondering what quiet is all about. I often had strep throat too, or so it was generally diagnosed as. Mycoplasmas like areas that are high in cholesterol, they have to have it. So the throat, the mammary glands, the liver and gallbladder are all primary targets. The difference in right to left is because of a separation of the lymphatic ducts. The upper right side of your body is somewhat partitioned from the rest.
Thank you everyone so much... Today, and for the past 3 days, my foot pain is only when I take a step. It's not worse in the morning but it happens every now and then during the day when I step a certain way. I don't know how to explain it. Alll I know is, it hurts like a sharp "toothache" and you bite into a candy bar..ouch!
I have had heal pain before, but it happened when my feet were crossed over eachother lying down.... any one else get this?
it could be inflammation of a particular nerve. The soles of my feet were sore for quite a while before I was diagnosed. I limped around.
ewford is also right, could be a bone spur, tho I had heel pain when I was a kid and it was a bruise or something that finally went away. Given your other aches and pains, tho, I'd think of Lyme first.
Heel pain, brings a memory of an observation I made in my little town long ago. A lot of the kids were what is known as "toe walkers". They didn't place their heels on the ground when the walked, you know like the military teaches you, heel, heel, heel. I think in many cases it was pain in the heal that got them walking that way. relexology charts show the heal connected to the sciatic nerve/back. drsdonthelp, I understand exactly what you mean by toothache-like pain, wrote my mother the same thing not long ago about pain in my shoulder and shoulder blade, the left side. It's gone now.
I'm late to the party, but in going back to the original question:
"Some questions here.... If this is Lyme disease that I possibly have, could the coinfection of bartonella be as serious in its late stages?"
The first comment I'll make is that I personally don't know about specific stages to Bartonella. Furthermore, while I have heard of stages in reference to Lyme, I'm not sure it is the most useful way to think about the illness. For example, while neurological involvement may be a characteristic of "late-stage" Lyme, some people may experience it early on, while in others it would take the undiagnosed infection years to progress into the nervous system. Basically I think it is confusing and misleading to think about stages. Some of the most sick people have been infected for less time, and vice versa.
All of that aside, it certainly is possible for a particular co-infection to play a larger role in your illness. My doctor has always stated that my biggest issue is with Bart. JackieCalifornia, another long-time regular on this forum, does not have Bart, and her symptoms and response to treatment have been somewhat unique from mine. So while that's a darn small sample size of 2 people, it is anecdotal evidence for how different co's can lead to differences in symptoms and treatment.
My LLMD has also told me that, out of his patients, I have a relatively tough time with treatment, meaning that I have a lot of Herxheimer reactions to antibiotics. From what I understood from him, this may have more to do with the individual than the co-infection, but both could play a role. From what I've read from other patients, Bart can be tough to treat. It certainly has been for me.
Shin pain is one of the hallmark symptoms of Bart, one that sets it apart from Lyme and other co's. Also burning pain at the bottom of the feet. My shin pain is better but caused me problems with walking comfortably for a long time. I think the pain at the bottom of the feet is more of an inflammation related symptom, but from reading what other wrote it does make me wonder. I started experiencing hill spurs in my early 20's (when I was sick but not yet aware of it) and also developed a large bunion. I thought it was "strange" that I was developing foot problems normally associated with much older folks, and folks who were tough on their feet, but I just figured that I was unlucky. Now looking back I wonder if that was Bart in early stages?
I've had a lot of pain and foot pain with this illness. It is always good to rule out other causes, so you may want to see an orthopedic doc if your feet continue to hurt.
- Itching middle finger on the crease behind the top knuckle on left hand. Drives me crazy! Comes and goes.
- Foot/Hand Pain. Although most of my symptoms are neuro, I have had bad bouts of pain in the joints of my toes and fingers. It seems to come, last a few days and then goes away.
- Twitching/Vibrating/Pulsating in my legs and twitching EVERYWHERE! This has pretty much gone away except it still acts up every now and again, especially when I have anxiety.
- Hyperreflexes: Yes, I have those too.
- When my symptoms first started and actually until I started treatment, I had tremors in both my hands pretty bad. Mostly the right hand was really bad. I do think however that my anxiety over not know what was wrong made it worse. Again, this has gone away too.
- Numbness in left leg/foot/big toe area which I had until I started treatment. That has cleared up too.
- A funny sensation under my left eye of tingling or something. Not sure how to describe it, but this is still with me on and off. Today I actually felt it this morning.
Anyhow, I hope this helps. I've had many more symptoms, but these are all I can think of at the moment.
I'm trying to remember you, because I thought you had already tested positive for Lyme...? I think I used to see you in the MS forum too...?
I thank you for your input, but I also feel like you thought I was putting people into categories. I do not know much about lyme disease or its coinfections except from reading for the past month. I am learning as I go, so if you thought for any reason that I was categorizing, I wasn't.
I am trying to figure things out, and I am asking questions in hopes for answers.
I can understand that everyone is different, I know that. I am looking at my pattern that I have had, and because I have not been dx'd as of yet, nor do I know if this is even it, I am asking for anyone's input.
So, when I wrote it as "late stage", all I meant was how long its been in my system or whatever.... I do have problems with word finding and getting my point across as well, so maybe I didn't "know" the correct wording for it.
Hi Carrie, Yes ... I am on the ms forum as well. I started over there because my symptoms were so familiar to ms. I never thought lyme because the testing I had done were negative.
I am trying to get some solid background here to refresh my timeline. I left out alot of other things, because when looking for ms, you don't think cysts and fibroid breast disease could be a characterisic. But from what I have researched and read about this past month, it is characteristic in lyme.
I will be going to see a LLMD Oct. 7th so I am gathering info.
Thank you for responding, I appreciate it very much.
Don't worry -- All of Lyme is murky and indistinct, so there are not clear categories of much of anything -- late/early, bad/good, tired/not .... it's all relative and changes all the time.
Just focus on your upcoming doc visit, and get your timeline and symptoms down to maybe a page. I found I had to have a copy of what I gave the doc, so that I could give the doc a copy while I talked, and I could keep myself focussed on where I was trying to get with my narrative, esp if the doc asked a question and got me sidetracked. My memory was so bad that without notes, I was a blank slate.
You'll be fine -- you're doing great getting prepared.
I'm sorry if my post came across that way, it was not my intent. I was trying to point out that trying to assign a stage to TBI is not always helpful, because the infections have such an individual effect on each person.
I'm not familiar with fibroid breast disease but years ago (when I was likely already infected but still holding up well enough to not suspect a serious illness developing) I had terrible breast pain. I was around 23 or 24 at the time? I had to get an ultrasound and other tests done to exclude cancer. I was told in the end that I was experiencing "cystic changes" in my breasts.
Whatever it was, the associated pain actually sent me into shock a couple of times. It was awful.
When my neuro symptoms developed I also never thought to include the breast pain issues into my timeline, nor the bunion or foot pain I described above.
These days, I have a lot of inflamed bunches of muscle ("trigger points") around my underarms and down my sides below my breasts, and more up higher around my shoulders. I'm not sure of the total number but I have dozens. I'm told that this is referred to as "myofacial pain syndrome" and it results in the inflamed muscles taking on characteristics of connective tissue.
I also developed some cysts in my hands that I attribute to the infections.
That's the nasty part of these infections, they cause systemic problems and it is really tough to connect the dots especially when symptoms onset in a seemingly unrelated manner. I swept everything happening to me under the rug as "stress-related." It wasn't until the neuro symptoms emerged ('07) that I even started to put together the pieces.
i have been sick for 3 years and they tod me it was fybromalgia i did research last year and found out it was lyme. i have been on antibiotics for it for 4 months i feeling better but the ID doctor i saw for the first time told me i didnt have it. i had a new blood test done and it shows my igm bands going away but my igg is showing up now what does this mean could it be something eles?
thank you for your response, and sorry if I read your first post wrong. I am so ready to find out what my body has been doing to me for soooo many years.; I said before, I have looked back in time and light bulbs kept going off.
I was a "Girl Scout for like 4 years", I went camping in the woods, spent time hiking, and sleeping in shack like cabins at dude ranches!! LOL I have been horse back riding numerous times and have made a lot of forts deep deep in the woods...
I have had multiple allergies growing up, double ear infections all of the time, kidney infection, UTI's, slight case of asthma, I had my tonsils and adnoids removed when I was 15, at 17 had cat scratch disease and lymph node removed, soon after was on penicillin for some sort of infection, and thought that I was allergic to penicillin because I had a rash surrounding my mouth!! It was horrible. It was the end of the year of school and I had to still go with this horrible blistery rash on my mouth, soooo embarrassing.
Stomach pains were really bad, started up for no reason and lasted for hours and hours, curled up in a ball in pain.
I have a really strong gut feeling that my LLMD is going to say that I have lyme disease.
thanks again, and so gladd to have you all to talk to,
Thanks for letting me know that. I was always curious about the reaction I had to penicillin, still not that sure if it was an allergic reaction, but, I have always had to let drs. know that I break out in a rash from penicillin.
How about hives???? I also have had an allergic reaction to latex... so bad that I was in the emergency room fighting off a horrible infection that swelled up the lymph nodes in my elbow crease and armpit. My had was twice its size! I was feverish and slow moving and in alot of pain... that was 17 yrs or so ago.. I also broke out into hives all over my face.
I can't tell you how much all of these things have drove me crazy over the years. I always thought it was "normal" to have hives after taking a long hot shower,, is it?? I dont know, anyone else have this happen?
When I was first infected/noticed my symptoms, I would get hives and be sensative to hot water (where it felt HOT). Initially I also had sensativaties to cologne or soaps that were used in showers. I actually did not shower or put on deorderant for some time and my wife did not understand.
LOL, I can understand,, I worked with the physically and mentally challenged for 16 yrs, and when I first started to break out in hives, I thought it was the hair lotion that I was using on one of our girls and thought that I might be allergic, so here I was putting latex gloves on to protect my hands, and it kept getting worse, so that's when I realized that I can still put her lotion on in her hair, but not to use latex. I tried to stay away from her on purpose, not that I wanted to, but I really didn't want to break out in hives again and again.
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