I have been sick for about 3 months now with absolutely no answers and no where to turn. First I'll tell you that when I was 12 I had a bullseye and was treated with 2 weeks of antibiotics. The year later I had bells palsy which passed.
I have been pretty healthy and active other wise until last year. During my teens my jaw began to click and get stuck and I have been dealing with that for years not thinking anything bc its just TMJ. Well last year I was re-bit but never got a rash so didn't think anything of it.
Well last summer I had a sinus infection that would not go away for over a month through 3 or 4 Z-paks of antibiotics. Then one day it was just gone. I then started having episodes of PVC's with my heart which are premature ventricle contractions. They attributed that to my birth control took me off and it went away other than when I was due for my period. Well they came back over the winter when I started to exercise but just attributed that to the fact that I had been inactive for a while.
Well in April the headaches started especially during exercise. Everytime I would go to Zumba my head would start pounding I would get lightheaded and dizzy until I had to walk out of the class. Well in May the headaches turned into everyday and chronic. For a couple of weeks aleve helped but then it stopped which brought me to the doctor. She put me on fioricet which did nothing. I went back and she sent me for an mri and to a neurologist. mri was unremarkable neurologist put me on a steroid and topamax. It did nothing but make me ten times worse.
I started getting rapid heart rate increased dizziness and nausea severe jaw pain i couldnt even chew. the only thing I did was sleep and shower sleep and shower over and over again with no relief. then bam that sinus infection was back. they took me off the steroid and topamax and all of a sudden I was depressed over nothing plus my heart wouldnt stop racing.
When I went on the antibiotic it miraculously got rid of EVERY symptom then when I stopped they all came back 10 fold along with tingling in the left leg and arm, burning sensations, blurry vision, heat intolerance, severe tremors and muscle twitches all over my body, numbness during sleep, 30lb weight loss, random shooting pains in knees, constant pain in neck all the way down my spine, anxiety and im on a beta blocker bc my heart constantly races.
had another mri of brain and cspine plus insane amount of blood work, thyroid scans, lyme elisa and everything was fine.
So I decided to do my own research and found that lymes is the only thing that matches every single symptom so I decided to say something to the neurologist and I get, "how many negative tests do you need to get, this isn't lymes I dont wanna hear anything more about it!" So I pretty much fired him and now Im with an infectious disease doctor who prescribed me a month of doxy 100mg 2x a day incase and ordered a western blot, coinfections, viruses, parasites, magnesium, cortisol, ana and some other stuff.
I just recieved my igenex kit in the mail bc I was going to order through them but he already ran all of the tests just waiting on results from labcorp. Does this sound like lyme and should I pursue further if he says im fine or should I just pursue another diagnosis?
[ 08-04-2011, 06:44 PM: Message edited by: distressedmom2958 ]
Posted by distressedmom2958 (Member # 33041) on :
Also my husband is currently in lymes treatment from a bullseye which he was only given 3 weeks of doxy for. how did he get 3 weeks with a bullseye and i get a month with no proof of the disease!!!
Posted by distressedmom2958 (Member # 33041) on :
Im 26 now with a 4 year old and 2 year old and I can't function.
Posted by philly78 (Member # 31069) on :
Sounds to me like you never actually got rid of the lyme the first time round. Bells Palsy can be from the lyme as can TMJ. Getting bit again could have just added to things.
You really should post in the seeking a doctor section. Find an LLMD in your state and run away from the infectious disease doc. Most won't treat you like you need to be treated.
Your husband is also going to need more than three weeks of abx. That will not get rid of the lyme completely. I don't care what the doc says.
This certainly sounds like lyme to me and I definitely pursue this. You know you were bit.
Posted by distressedmom2958 (Member # 33041) on :
I did post there money is a huge issue right now as I can't pay rent with both of us out of work sick. I have state Medicaid so no llmds accept it and they are sooo expensive. Idk what to do I just want my life back.
Posted by philly78 (Member # 31069) on :
I'm sorry. I know how tough this disease can be. I must have missed that part. It is actually kinda hard for me to read when something is written in blocks of text like that.
There are some things that you can do on your own to try and feel a bit better such as change your diet, take some supplements or even try some herbs.
Changing my diet actually made quite a difference for me. And certain supplements have improved some of my symptoms.
I actually just read through your post again. I didn't notice that you said you took steroids. They made you worse b/c steroids are contraindicated in lyme patients. Unless it is life or death, I wouldn't take them again.
They suppress your immune system and that is the last thing you need. You want to try and build it up.
Maybe you'll get lucky and the ID doc will do more than most others do. My coworker got lucky but I think it may just be b/c he is associated with the hospital I work for and she knows him well. She's on her 3rd month of treatment with him.
Posted by Carol in PA (Member # 5338) on :
One of the simplest things you can do to help your symptoms is to take a good magnesium supplement.
Lyme Disease causes low magnesium, as the bacteria use it up. Many of the symptoms listed for Lyme are due to low magnesium, such as anxiety, depression, muscle twitching, heart beating too fast, headaches.
Of course, this is not going to solve everything, but should help you feel a little better.
p.s. Start slow, 200 to 400 mg daily, and work up to 800 mg in divided doses. Some people are able to take more than that, but you'll have loose stools if it's too much for your body.
[ 08-05-2011, 05:02 PM: Message edited by: Carol in PA ]
Posted by Lymetoo (Member # 743) on :
NO way I can read what you wrote. If you are able, please go back and edit to put SPACE between the sentences so more people can read it and be able to help you.
is that better lol Posted by glm1111 (Member # 16556) on :
The salt/c protocol and antiparasitic herbs are very effective against pathogens and very inexpensive. Both protocols save my life after 4 yrs of abx with little results.
Check out lymestratgies for more guidance of salt/c an do a search on here for parasites.
Gael
Posted by distressedmom2958 (Member # 33041) on :
I'm currently taking acidophilus Bc of yeast how many mg of magnesium should I take. What symptoms will it help with?
Posted by Lymetoo (Member # 743) on :
quote:Originally posted by distressedmom2958: is that better lol
YES!!! Thanks!! ( my reply will be brief as I have severe neck pain myself! )
LabCorp MAY show some bands.. let's hope. MOST inf dis doctors will NOT help past about 4 wks, so don't hold your breath. I do HOPE you found one who knows about Lyme and will treat it...but that's only about 5% of Inf Dis drs at best.
Be sure to post your positive bands when you get your test back. Sure sounds like it could be Lyme. Get your hubby more meds if possible so he does not go chronic as well.
Posted by distressedmom2958 (Member # 33041) on :
Well I know he has patients with picc lines in and others on IV rocephin so that's a good sign to me
Posted by Lymetoo (Member # 743) on :
Yes it is. May not be good if your test comes back negative though.
Posted by distressedmom2958 (Member # 33041) on :
Very true my appt is Monday so we will find out the results then. I'm ready for an answer so I can treat and get my life back.
Posted by searching4truth (Member # 28481) on :
First, I apologize if I repeat anything that was already posted. I do not have the energy tonight to read all the posts before mine. But I want to share a little of my own story with you.
Your symptoms and story is so much like mine. I was infected 14 years ago, but just was finally diagnosed last fall. For me, it started with weight loss, then a six week period of TMJ where I could not open or close my jaw all the way. Then other periods of time with massively swollen and painful joints, when a rheumatologist put me on a steroid for 6 months.
I will tell you that steroids are like putting gasoline on a fire when it comes to Lyme disease. It nearly cost me my life. Avoid them at all cost!
I had many other symptoms come and go over the years. It came to the point a couple of years ago when my symptoms just intensified, and no longer dissapeared.
I know how difficult it is to get treatment without insurance. But in my opinion, only a LLMD will be able to get you better. Or a very openminded doctor. If you have had Lyme since you were a child, and have taken steroids, you have a complicated case. Although probably every case is a complicated one.
I highly recommend finding a Lyme literate doctor. Even if your tests come back negative. With Lyme, the sicker the person, the more negative their test results.
Posted by distressedmom2958 (Member # 33041) on :
Well my 4 year old just woke up this morning with a bullseye the pediatrician is treating him with 3 weeks of amoxicillin. She whipped out her Issac guidelines book and I wanted to scream. Where do I go from here?
Posted by distressedmom2958 (Member # 33041) on :
Well my 4 year old just woke up this morning with a bullseye the pediatrician is treating him with 3 weeks of amoxicillin. She whipped out her Issac guidelines book and I wanted to scream. Where do I go from here?
Posted by distressedmom2958 (Member # 33041) on :
Idsa guidelines book *******
Posted by distressedmom2958 (Member # 33041) on :
Idsa guidelines book *******
Posted by distressedmom2958 (Member # 33041) on :
Well I have two bands present igg p41 and igmp23 but he says those are normally found in the mouth so I'm considered negative.
Posted by distressedmom2958 (Member # 33041) on :
would you consider those bands negative or positive?
Posted by Lymetoo (Member # 743) on :
They are both positive since they both showed up on the test. Band 23 is LYME SPECIFIC .. only Lyme can cause that band to show up. It has NOTHING to do with what is in your mouth!
Your family is at high risk for all of you going chronic. Get a call in to an LLMD immediately!!!
I have no idea where you live, but please post in Seeking a Doctor ASAP.
you need to get a test thru a reliable lab!!!
Posted by distressedmom2958 (Member # 33041) on :
My husband is now hospitalized because he stopped responding to doxy.
Yesterday he couldn't get out of the shower from the pain, his fever shot up to 103.9 and his blood pressure drastically dropped.
The first ER doctor said I've seen people with Lymes disease and it doesn't do this and refused to give him medicine because he thought he was just trying to get pain meds.
The nurse actually called a second doctor in and he is the one that said Lyme DOES do this and its a serious infection. They still can't get his temp under control so I dont know when he will be coming home.
The took him off the doxy now he is on an IV antibiotic I forgot the name of it.
My son is I believe herxing he is in so much pain and has a fever out of no where.
I'm so scared of this whole thing, I need treatment but I need money to get appropriate treatment. I dont know where to go from here this is horrible.
Posted by distressedmom2958 (Member # 33041) on :
I live in Sussex County NJ
Posted by Lymetoo (Member # 743) on :
He needs to be tested for ehrlichiosis ASAP!! Anaplasmosis is the same thing. Doxy is necessary if he has this!!!!
That nurse may have saved his life!
Posted by distressedmom2958 (Member # 33041) on :
I know she did she was livid because of how careless the doctor was treating him. She knew and could tell he wasn't faking everything. I mean seriously how do you fake a damn fever GIVE ME A BREAK!!
When he responded so badly to the hot shower I tried to tell him that he was herxing and it was a good sign but he was in so much pain that it hurt to breath i had to call the ambulance.
I believe the antibiotic they have him on starts with a C if I saw the name I would know what it is.
Do any of the doctors on your list you sent me accept insurance?
Posted by Lymetoo (Member # 743) on :
I don't know. You'd have to call them. Most LLMD's do not accept insurance because it ties their hands.
SEE "TF's" REPLY ON THE ABOVE LINK. PERFECT EXPLANATION!!! (also lou4656)
Posted by PhillyLyme (Member # 26468) on :
Sounds a bit like me but I never had the bulleye....
8 years ago I had a battle with Anxioty, Spacy feeling, and then followed by bad twitching then a TMJ...all when away on its own...
Fast forward to now...Having major issues but reacting to ABX which is a good sign...
Here is what I will said:
1. Get a GOOD doctor. 2. Get a GOOD doctor. :-) 3. Read read read. This is a great site but dont take peoples word for it...take the lead from this site and research them. That is what we all do here. 4. Trick to beat this seems to be a. abx b. probiotic to make sure you can keep taking abx c. Right supplements ( you need to see which ones work for you) d. Detox (it what I am looking into right now) e. Life style (stress, exc, diet) 5. Get a GOOD Doctor
My advise:
1. Get a good doctor 2. Read Read Read. There are some funky theories that I am not sure I am ready to believe but you will see a pattern of folks who have gotten well. I am still learning but that seems to be
Posted by Carol in PA (Member # 5338) on :
distressedmom2958,
How are you and your family doing?
Posted by Kudzuslipper (Member # 31915) on :
I would like to know how you and your family are too.
Is your husband in the hospital still? Could you ask the helpful nurse or the 2nd doctor if she could lead you to even a good primary care physician who is willing to work with you and your son, and your husbands continued care once he is out and more stablized.
I have a great PCP who believes in Lyme and continues to treat me with just band 41. I am not sure what her records say... but jokingly (not sure how much) she said she is willing to keep my "sinus infections" and "acne" at bay. I believe there are still many PCP's and pediatricians who see how real this is.
Keeping you in my thoughts
Posted by distressedmom2958 (Member # 33041) on :
Hi we have all finished antibiotics. I have an appt with an llmd in October Bc my symptoms are coming back one by one. Only issue is I may be pregnant and don't know idlf I will be treated.
My husband and son are feeling fine right now but we plan on taking further action.
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