I have had all of the same symptoms as you. The sound sensitivity and muscle twitching stand out the most at this time. And an occasional snapping or wave sensation in my brain. I did briefly have all over joint popping. I am still in the diagnostic process. I hope all is better for you. Please let me know if you have any suggestions for my own course of diagnosis and treatment.
Thanks.
So the EDS seems to be a dead end as far as Kaiser goes. I hope that the Kaiser doc read the comment from the PT who said you were 'hypermobile', assuming the PT was a Kaiser PT.
Too bad you have to go outside Kaiser for your llmd, but that's the nature of Kaiser and I'm glad you took the initiative.
Telling your Kaiser PCP what medications you're taking is necessary, of course. And I guess that, if asked, you will have to tell your PCP why you're receiving those meds. I don't have a clue if that will hurt your relationship with your Kaiser PCP or not but there are some Kaiser docs who, although they can't treat for Lyme (or risk censure by Kaiser admin), DO know enough to be sympathetic towards their Lyme patients. I hope you have one of those.
I'm back from the doctor. She didn't think I had EDS but she didn't see how bad my joints sound!
It's pretty weird and getting worse.
The doctor I'm seeing for Lyme disease isn't from Kaiser. I had to go somewhere else for it.
My primary care doctor that I saw today is at Kaiser though.
I don't know whether to say "I hope it's EDS" or not!! :( Sorta like six of one, half dozen of another! But getting an answer, in my opinion, is always better than having a mystery.
Let us know, about EDS and Lyme.
One more question----- could you tell me if you're seeing a Kaiser doctor for your Lyme disease?
Thank you for the suggestion.
I looked into EDS again and it is possible.
I never had any problems with joints before, but I am flexible in the many ways used to diagnose Ehlers Danlos.
I will talk about this with my doctor.
Thank you
I am sorry about your vision and hip. :(
Lyme is really horrible.
It's assuring that your friend's vision got better. I hope mine will too. It seems even worse today for some reason.
I had discarded the Ehlers-Danlos Syndrome (EDS) since you said you didn't think it was a problem.
After your post today I revisited some sites and found that EDS is commonly associated with pain. A friend has EDS but almost no pain, so I just figured o.k.---- pain doesn't = EDS. I was wrong, oh so wrong! Just goes to show that there's no 'always' in our health.
Since EDS affects the collagen in the body and since Lyme also can lodge in the collagen/connective tissue of our bodies-----
I don't want to jump to any conclusions about your problems, Lyme or other, but if it were me I'd certainly get this looked into more.
"Chronic pain from EDS may be constant yet changeable throughout the day."
A chart at this pdf
http://www.inthefaceofpain.com/content/uploads/2011/12/factsheet_EDS.pdf
..... shows that knees account for 89% of the location of pain from EDS.
Since you belong to Kaiser you can't mention Lyme to your doctor but I'm pretty sure that EDS is a safe subject with them.
I hope you'll at least find out if EDS is a problem in your case. One thing to be crossed off your 'concern' list maybe.
Hi, I am sorry for your problems but I can relate to your feeling of loneliness and feeling strange.
I had the same thing with my vision. It comes and goes with treatment. I am a different case then you, I was bitten over 20 years ago but didn't realize it until 18 months ago.
I have nerve damage which could permanently affect my vision so I see a specialist. I have friends whose vision was fine with treatment.
As for joints etc, in my 40's I had to have my right hip replaced. I now know that it was because the bugs love eating cartilage, again, that was because I had it for so long before starting treatment that it got to that point.
My knees and other joints are painful but that can't be seen in an X-ray. That can be a side effect of Lyme.
Its probably good to tell your PCP that you see a Lyme specialist because of medication interactions. He should know what you are taking and vice versa.
I wound up in the hospital last year and had to tell them I have Lyme. I was looked at funny by some but they had to live with it. Its better to be safe then sorry.
Feel better
Hello again -- Another update
I went to my appointment. I forgot to ask for a copy of my tests, but my doctor said I had three positives and two INDs. He explained how I would be CDC positive if those two INDs were also positive.
I was prescribed Cefuroxime and Azithromycin for now and am going to be tested for co-infections in the next few weeks.
Also forgot to tell him about almost passing out! (ah!) There was so much do talk about and it was kind of rushed.
I will make sure to mention it to him soon when I get tested for the other things.
The morning before I took any antibiotics I noticed my vision was a little weird, like there is a slight "tv static" appearance to everything. I'm really hoping this will go away. Yesterday I got my eyes checked and have a little bit of nearsightedness, but it doesn't explain the static.
I've always had pretty good eyesight until recently...
Has anyone here experienced something like this with Lyme? Did it go away with treatment?
I've also noticed my knees seem to have gotten even worse today--still very little (or no) pain. It feels and sounds like there are rocks in there!
My thigh joints--or something--have been popping a lot more in the past couple of days too, like they're coming out of the socket. It's really starting to scare me.
All I have done this week is go for walks. Nothing strenuous.
I tried doing some strengthening exercises prescribed to me by my physical therapist because my original diagnoses was Chondromalacia patella (patello-femoral syndrome) or softening of kneecap cartilage, to see if it might help my knees.
This is when I noticed they, and my thigh/groin joints had gotten worse. Almost every time I straighten my right leg, it feels like something is catching.
I feel and hear a loud pop near my upper thighs too... They didn't do that a week ago.
It has to be Lyme. I don't understand how it could get worse so quickly if it wasn't.
I want to go to my PC doctor to get MRIs, but she already showed me my knee X-rays and told me I'm fine. I can't be fine if they're getting worse!
I feel like I need to know how much damage there is.
I am afraid to mention going to a separate doctor for Lyme. Is there a good way to explain this to my PC doctor?
Thank you so much for reading and for you support! This disease makes me feel lonely and strange all the time, but I am glad there are people here to talk to.
Good! Be careful driving -- and do relate these episodes to the doc so he's fully aware -- we'll be here when you get back. Best to you -- J.
Yes I am glad I finally know what this is! I will ask for copies of my test. I don't really understand how the tests work or how they are read but I am curious how my doctor figured out that I have lyme antibodies.
I'll talk to my doctor about being dizzy and mention orthostatic hypotension.
It was very weird. When it happened the second time all I could think about was finding the chair in the other room. Somehow I found it even though I couldn't see! It was definitely an "unavoidable need to sit or lie down" feeling.
It was very strange. I will make sure to be careful if it happens again.
I know it has to be lyme related in some way because it's never happened before; especially two days in a row.
I am seeing an LLMD in my area. When I talked to him on the phone he said I should be tested for the coinfections, so that's good. He also mentioned the antibiotics.
I will let you know how it goes. My appointment is tomorrow.
Thank you again!
I am so glad that your doctor recognizes Lyme antibodies, even when the overall CDC interpretation isn't "positive."
Lyme loves connective tissue, as it's a low oxygen environment and often protected from the immune system. It's probably why your joints feel loose. It's a blessing that you don't feel pain at this point, as some have described horrible joint pain that is crippling.
I have had a variety of different kinds of headaches in my Lyme and coinfection experience. Sometimes dull and low grade, other times sharp and specific. Headaches are really common with Lyme.
Be sure to be careful when you feel dizzy or light headed. For me, it would come on without warning. Passing out and falling can result in a concussion, so you want to avoid that. In Dr. Burrascano's Diagnostic Hints and Treatment Guidelines, he has a symptom list that includes "unavoidable need to sit or lie down." You'll know it when you feel it. I have a lot of experience with that one. When you feel it coming, sit down, or lie down immediately. It usually passes for me within a few minutes, but when I was sicker, it could last for a couple hours.
I am not sure if you're seeing a LLMD or not, but make sure that you do. You'll invariably need more than a couple weeks of antibiotics given your symptoms. Let us know how it goes!
Sorry to hear about your test results, but at least it means you know what it is -- and that's the first step toward getting well.
Sometimes Lyme messes with blood pressure and related bodily systems, and no two of us get the same set of symptoms, which is one things that confuses docs sometimes. Low blood pressure could, from what I have read, cause you to feel lightheaded etc.
I just googled
lyme disease "orthostatic hypotension"
[with the quotes around only the last two words] and got quite a few hits online. It's something your doc can talk with you about. Lyme loves to mess with the body's 'control panel' .... hormones, blood pressure, a lot of the things that we aren't normally conscious of till they start getting strange.
Be sure to bring it up with the doc, okay? As you get treated, it will get better.
Please let us know how the appointment goes and what the doc recommends as treatment, okay? Some docs get as far as the diagnosis but then aren't as up to date as they need to be about testing for co-infections (other diseases the Lyme ticks often carry too) or giving something other than very basic antibiotics for a fairly short time.
**Be sure** to get copies of ALL the test reports the doc has -- tell him you want to have time to read them at home, and would like copies of ALL the pages. Sometimes docs only give the summary page, but for lots of reasons, it's important for you to have a complete set of the test results, now and going forward. It's sometimes hard to get them later, because doc's offices don't like spending money on copies, and will give you only what they 'think' you need to have. You paid for the tests, and you deserve a full set of test results. They have no basis NOT to give them to you.
End of lecture, you've got enough on your plate -- sorry to hear you have Lyme, but finding out what you have is the first step to Getting Rid Of It -- !!
Hang on, we'll look forward to hearing from you soon -- best wishes! J.
Hi everyone.
It's been a few weeks but I decided to post an update.
My western blot came back. I talked to my doctor on the phone today and he said I had antibodies for lyme.
I'm relieved to know I wasn't exaggerating my symptoms and I am really glad I was able to figure out what was causing it, but I am scared at the same time.
It seems like the joints in my body are really loose, so it feels like I'm literally falling apart. There's not much pain at least. I hope treatment will help with this.
I don't know if it was caused by lyme, but last week I nearly passed out twice. One of those times I was sitting in a chair, so it wasn't caused by standing up too quickly or anything. It was really weird. My tinnitus got really loud for about an hour.
I've also been having weird headaches lately, which I blame lyme for.
I have an appointment with my doctor again on thursday to discuss my test some more.
Thank you all again for all the advice!
I would not take any herbal-type remedies or medicines without telling my doc first and getting an okay.
Drugs and herbs are all just chemicals, and they may interact in unfortunate ways that make the antibiotics ineffective.
Thank you! I'll have to look for that. :)
I have tinnitus also and looked at the ingredient for RingStop. Seems it's homeopathic. I'm glad it's helped you.
Ring Stop Ingredients
ACTIVE INGREDIENTS: Calcarea carbonica: (Calcium carbonate) 8x, 30x, Cimicifuga racemose (Black Snake Root) 3x, 6x, 12x, 30x, Carbo vegetabilis (vegetable charcoal) 8x, 12, 30x, Cinchona officinalis (Peruvian Bark) 3x, 6x, 30x, Chininum sulphuricum (sulphite of quinine) 12x, 30x, Coffea cruda (unroasted coffee) 3x, 12x, Graphites (plumbago) 8x, 12x, 30x, Kali carbonicum (Potassium carbonate) 12x, 30x, Lycopodium (club moss) 6x, 12x, 30x, Natrum salicylicum (sodium salicylate) 6x, Salicylicum acidum (salicylic acid) 6x.
OTHER INGREDIENTS: Vinpocetine, Arginine, Alpha Lipoic Acid, Ginkgo biloba extract 24/6%, Chinese Herbal Extracts (Ligusticum, Gui Zhi bark, Chi Shao root, Ge Gen root, Job’s Tears seed, Magnolia flower, and Chuan Xiong root), N-acetylcysteine, Garlic extract, Ginger root, Kelp, Folic Acid, Beta-carotene, Magnesium amino acid chelate, Vitamin B-12, Vitamin B-6, Vitamin A, Zinc amino acid chelate, and Melatonin.
Calcarea carbonica (Calcium carbonate) relieves throbbing and cracking noises, stitches and pulsing sensations in the ears.
Cimicifuga racemose (Black Cohosh Root) is helpful for tinnitus symptoms, and for people who are very sensitive to noise, as well as pain and muscle tension in the neck and back.
Carbo vegetabilis (vegetable charcoal) - This natural remedy is for ringing in the ears, especially if it occurs during flu or other conditions involving vertigo and nausea.
China (Cinchona officinalis) (peruvian bark) helps ringing in the ears and hearing sensitive to noise.
Chininum sulphuricum (sulphite of quinine) helps relieve violent ringing, buzzing, and roaring sounds that are loud enough to impair a person’s hearing.
Coffea cruda (unroasted coffee) is for people with tinnitus accompanied by extremely sensitive hearing and a buzzing feeling in the back of the head.
Graphites (plumbago) - This remedy is beneficial for tinnitus with associated hearing loss, and for hissing and clicking sounds in the ears.
Kali carbonicum (Potassium carbonate) is for tinnitus with ringing or roaring, accompanied by cracking noises and itching in the ears.
Lycopodium (club moss) is for a humming and roaring in the ears, along with impairment of hearing, and sounds that seem to echo in the ears.
Natrum salicylicum (sodium salicylatae) - This remedy is beneficial if ringing in the ears is like a low, dull hum, and for loss of hearing related to bone conduction, as well as nerve interference.
Salicylicum acidum (salicylic acid) - This remedy is indicated for tinnitus with very loud roaring or ringing sounds, which may be accompanied by some hearing loss. It may also be helpful if tinnitus has been caused by too much aspirin.
Hi Kitt,
Hopefully you are still reading this but I wanted to tell you that there is a product called for tinnitus and darned if I can't think of it this second and I don't have the bottle with me here at my office. It's called RINGSTOP!!! That's it!! ha ha
Anyhow, I feel that it really really helps. When my tinnitus flairs (and it is now), I take two tablets in the am and two in the pm. You can get it at the vitamin store but I get mine on Iherb because it's kind of pricey...(but well worth it). My ears were screaming over the weekend but I was also having anxiety about stuff and I really notice it when I'm anxious.
You're very welcome -- we'll look forward to hearing from you further. Best to you!
(Sorry for the typos above .. I got interrupted a few times!)
Thank you!
I will bring a list of my symptoms next time.
I'm glad I have a place to go where people understand. You're very helpful. :)
The symptoms like sore or clicking knees usually come and go. It's pretty common, and annoying of course -- but try not to worry about it. From now until your appointment (!!!) make a running list of your symptoms ... just keep a pencil and pad nearby and jot down a symptom when it pops up, if it's one you haven't noticed before.
I was always so wound up when I saw the doc that I couldn't remember anything ... and notes saved me.
A lot of Lyme symptoms come and go, and knees can do that too -- try not to worry -- treatment works miracles. You'll get there!
.... and remember, it's also part of Lyme to feel worried and anxious about what's going on, because of the way Lyme messes with your endocrine system. I felt anxious, worried, and nervous until I was treated. It's not you: it's the bugz.
It helped me to keep a running calendar of my symptoms on what days and how bad or good I felt -- how well I slept, etc.. Some docs like to review those -- my doc did, so I'd take the list with me. I kept it on computer, but handwritten works too.
Even if your doc doesn't like to review your list, it is useful to review just before your appointment so you can report accurately on how your symptoms have been, how often, what trends, etc.
I felt calmer after I had written it down, because I knew it wasn't my imagination: it was real, and it was in writing.
Hang on! Two weeks will go faster than it seems. Keep us posted, ok?
For docs who don't want to read the whole thing
Thank you for all of the information! I will talk to my doctor about this.
I went to see the doctor on Wednesday and he ordered some tests. I'll get them back in two weeks.
I have another question about my symptoms. My knees haven't been hurting for the past 4 days or so, but yesterday they started grinding and popping a lot more.
I've been really scared because the damage seemed to progress pretty quickly. I'm almost afraid to walk.
Do any of you have a grinding/crackling sound when you bend and straighten your knees?
Or sometimes BrainFogMoose.............
My correction in decimal placement. 2003 guidelines for TSH are .3 to 3.0
LM
Gotta change your name to KnowledgeableMoose. :)