HealingWell
Search Close Search
☰

Where should I start/thoughts?

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/25/2014 4:33 AM (GMT 0)
I first started experiencing ear ringing back in August. This was soon followed by sound sensitivity and jaw tightness/aches. Hearing results came back fine but around this time, I started having weird issues with my vision such as snow, light sensitivity, trouble focusing.... And then came the nausea and now 6 months later, generalized muscle and joint aches, especially in the knees, as well as itching, the occasional muscle spasms, and joints/neck cracking. Also had fatigue, depression, anxiety, and just an overall ill feeling. Whole thing has been all over the board with symptoms coming and going and I've had every test run short of getting an MRI. A lot of doctors seemed to think anxiety but that doesn't cause the vision issues. I had a basic lyme test but that came back negative. (Not surprised there)

All that said, what should I consider as a treatment option? I read the sticky so I'm well aware of the different options. I'm a 22 year old male who's been in good health up until now, besides kidney stones. (Which equally suck) Weird thing is I'm in Florida and supposedly lyme isnt common here, but I HAVE found ticks and fleas on my dog as well as on myself in the past. Never saw a rash, at least not anything that seemed too out of the ordinary. I wanted to get some forum members perspective. You all have probably seen everything under the sun so I'm wondering if this is in fact lyme.

I'm considering ordering an IgeneX test as well as putting myself on a detox with epsom salts. Coffee enema sounds like a bit much but if it works.... I have an appointment set up with an LLMD but that isnt for a month and half andI really dont want to wait. I'm sick of being ferried from doctor to doctor with no answers, especially now that I think it is Lymes. mad mad I've basically had to research this all on my own. Thanks for the help!

Post Edited (mattyb429) : 2/24/2014 10:01:38 PM (GMT-7)

Posted 2/25/2014 6:04 AM (GMT 0)
It does stink to have to wait a month for your appt., but unfortunately the more I know about this situation I've learned that this kind of wait is common, and isn't as long as it could be (we waited about the same for my son's appt.).

I'm pretty new to all of this myself. My son was diagnosed just last month with his symptoms starting last fall.

Probably someone with more experience will comment soon on some ideas. The couple ideas I have are: diet (I've gotten a lot of advice to have my son go gluten-free and low to no sugar) and detoxing, like you're talking about. Others will have more info on that I'm sure.

I understand about researching on your own.. And you'll hear from so many here that they understand that too!

Hopefully the month wait flies by for you! and hopefully (most likely, if they're a good llmd) you'll get the help from you need!
Posted 2/25/2014 6:07 AM (GMT 0)
I've been sick about 28 ish years we think, I'm in my thirties now. I was just diagnosed a year ago and have an appt in sept! I know a month sucks to wait but it could be way longer, trust me. I am sorry you are feeling so rotten, you will get on the path to healing and it will be ok!

Post Edited (Maine76) : 2/25/2014 8:11:32 AM (GMT-7)

Posted 2/25/2014 6:57 AM (GMT 0)
@MattyB429 - Earlier the other day, I asked someone for some advice and they sent me a link to someones website for some answers I was looking for. On the website, I read this description of Babesia symptoms and they mirror much of what you listed. Babesia is a co-infection of Lyme. Actually, people can just have babesia without Lyme as well. Igenex Lyme Panel and Co-Infection panels are the best way that I know to test this. Additionally, many times Lyme and Co. are clinically diagnosed based on symptoms as blood tests are not 100% accurate to pick up these infections. Only 50% of the time do people get a rash with a tick bite. Here is the list:

Babesia symptoms, which may go back ten years or more, include one or more of the following; listlessness, slow thinking, high fevers or unexplained fevers, reduced appetite, chills, sweats, headaches and/or migraines, fatigue, muscle and/or joint pain, depression, anxiety, panic, nausea, vomiting, shortness of breath, cough, dark urine, enlarged spleen and/or liver, jaundice, enlarged lymph nodes, memory loss, psychiatric illness, struggle organizing, urgency to sleep in day, waves of generalized itching, dizziness, chest wall pain, sensitivity to light, and abdominal pain.

PS - Keep up your reading! You are doing well :-)

Post Edited (SLML) : 2/25/2014 12:04:21 AM (GMT-7)

Posted 2/25/2014 8:03 AM (GMT 0)
Hiya, good luck. Keep researching. Specific medical treatment advice needs to come from your llmd - the wait is shorter than many have had and you can make it - we'll root for you. There's lots of personal preferences posted for supplemental techniques and you can make your own call based on research you've done. Try the Google custom search with various symptoms to see more ideas. As for Lyme in Florida, lots of folks have managed to get Lyme in places where Lyme "isn't."
Posted 2/25/2014 11:17 AM (GMT 0)

SLML said...
@MattyB429 - Earlier the other day, I asked someone for some advice and they sent me a link to someones website for some answers I was looking for. On the website, I read this description of Babesia symptoms and they mirror much of what you listed. Babesia is a co-infection of Lyme. Actually, people can just have babesia without Lyme as well. Igenex Lyme Panel and Co-Infection panels are the best way that I know to test this. Additionally, many times Lyme and Co. are clinically diagnosed based on symptoms as blood tests are not 100% accurate to pick up these infections. Only 50% of the time do people get a rash with a tick bite. Here is the list:

Babesia symptoms, which may go back ten years or more, include one or more of the following; listlessness, slow thinking, high fevers or unexplained fevers, reduced appetite, chills, sweats, headaches and/or migraines, fatigue, muscle and/or joint pain, depression, anxiety, panic, nausea, vomiting, shortness of breath, cough, dark urine, enlarged spleen and/or liver, jaundice, enlarged lymph nodes, memory loss, psychiatric illness, struggle organizing, urgency to sleep in day, waves of generalized itching, dizziness, chest wall pain, sensitivity to light, and abdominal pain.

PS - Keep up your reading! You are doing well :-)

I'll research babesia some more! I feel petty complaining about this when I've only been dealing with it for 6 months while others have dealt 10+ years. It's just very hard to live a normal life when you're constantly feeling bad and a majority of doctors think it's all in your head. This could be something other than lyme but that's the only thing that makes sense. My symptoms have progressed pretty fast just in the past 2 months. My knees especially ache/itch at the back and around the kneecap and overall weakness at the joint. I've researched things like MS and RA but I'm way too young and I don't have all the symptoms.

How much do IgeneX panels typically cost? I'm wondering if I should just wait until I see the LLMD. Thanks for the support everyone!

Post Edited (mattyb429) : 2/25/2014 4:58:06 AM (GMT-7)

Posted 2/25/2014 2:55 PM (GMT 0)
Hello Mattyb429, Welcome to the forum!! It will be worth the wait for your first LLMD apt!! It is frustrating to be passed along from doctor to doctor!! I saw 12 doctors before I was diagnosed. My first apt with the LLMD, was amazing! He looked at me after telling him my story and said " Ive treated thousands of people just like you, you are going to get better" I almost cried! Hang in there!!! :-)   There is light at the end of the tunnel!!
Posted 2/25/2014 3:05 PM (GMT 0)
For us, we got the Western Blot through Igenex and it was $200.
That wasn't for any co-infection testing though, so sorry I don't know what the full panel testing costs.
The llmd drew the blood for us and sent it in, and it took two weeks for us to get the results.
Posted 2/25/2014 4:09 PM (GMT 0)
While I'm waiting, I guess I'll just try to slowly detox. If this is in fact lymes, at least that should make treatment go better. The issue I'm having right now is it seems all of the infectious disease offices around me, require an actual diagnosis, yet the typical blood tests, I believe through Quest, don't show it.

Through some more research, my symptoms most resemble just regular Lyme Disease with a couple symptoms of both Babesia and Mycoplasma.
Posted 2/25/2014 5:13 PM (GMT 0)
Hi Matt -

Good job on the research :-)

I think my co-infection panels through Igenex were $600, but my insurance, Aetna, reimbursed me completely for them. Not sure what your insurance looks like but they may cover them. I think I had to pay up front and then they reimbursed me.

By no means is noticing a change in your body petty! Especially as many as you were having. I think we can be trained to think that way - and maybe even more so for guys just to 'tough it all out". My father in law ignored a lot of symptoms in his body for a while and it ended up being renal cancer so I am of the conclusion, to pay attention right away!! I myself ignored alot of stuff until it got really bad - of course - it would be hard to ever determine my symptoms as lyme disease which I basically thought was just a bulls-eye rash with sore joints and heart issues and those weren't my primary symptoms. Oh my goodness...have I been enlightened!
Posted 2/26/2014 6:37 AM (GMT 0)
Has anyone had success as far as herbs/teas/supplements? It seems like that's all over the board so I didn't know if it was worth pursuing.
Posted 2/27/2014 4:51 PM (GMT 0)
Matty I would go ahead and do what you said and detox, eat whole foods, organic, take some good vitamins until you see the LLMD.

I searched for 15 yrs dealing with this crap, feeling like I was going to die or at least wanted to. As soon as I went to the right doctor, he knew right away, I was the one in denial. Never once did I even see Lyme come up on my researching symptoms.

I have had about 50 different symptoms over the 15 yrs, thank God I found an Ayurvedic doctor who came to Florida, I moved there shortly after I got sick. Took the herbs for about 7 yrs and felt almost normal. Found a doctor down there who supplied me with pain pills and it kept me going.

Took me to move back to WV to finally find the right doctor. My Igenex test was like $260, had to pay out of pocket but wasn't CDC positive, he also ran other blood work thru Lab Corp, a test called CD57, mine was 30, way low which is suppose to be another indication you have Lyme.

Plus he gave me drops called A-L complex, he said they won't bother you if you don't have Lyme and I started having a herxheimer reaction. At this point he started me on antibiotics.

I am 3 months into treatment, in this 3 rd month, I haven't had the dizzy/vertigo feeling for awhile so think it's helping and feeling better overall.

Just hang in there, I found this site very helpful, great people with lots of knowledge to answer questions.

Oh I had a friend who got Lyme, she got treatment after about 6 months and after a month on treatment she was better. Sound a little far fetch to me but she says she doesn't have symptoms so I pray you have a speedy recovery. Keep us posted.
Posted 2/27/2014 5:20 PM (GMT 0)
Hi Matty,

Welcome to the forum. I'm sorry to hear about the illness but I'm glad that you have been so proactive and found an LLMD. There are MANY folks on here that recover using herbs or homeopathy and yes - I personally believe it is worth pursuing. I used antibiotics and herbs AND homeopathy. The antibiotics made me functional so if I had to do it again I still would have done that but I definitely noticed a difference from being on herbs as well. Many of them are affordable too which is important because as you will find out - if you do have lyme - it is a very expensive disease.

~beth
Posted 2/27/2014 5:28 PM (GMT 0)
The blood results from my primary care came back negative. As far as I can tell, they ran a Western blot IGG and IGM test, nothing else. The LLMD in my area requires a referral from a physician so I'm not quite sure how to go about this. I've thought about ordering the IgeneX test and having them run that. I did do a detox bath 2 nights ago and yesterday, I started experiencing chills and still have them. Not sure how normal that is unless I happened to pick up a bug.
Posted 2/28/2014 12:14 AM (GMT 0)
See if they will do the CD57NK blood test.

Post Edited (Revive) : 2/27/2014 5:18:56 PM (GMT-7)

Posted 2/28/2014 4:53 AM (GMT 0)
So I took a detox bath 2 days ago with 2 cups of epsom salt, dry brushing, hydrogen peroxide, and very lukewarm water. Stayed in for 15 minutes. The following day, I had chills which continued into today. I decided to take another bath today, doubling the salt, making the water a bit warmer, but reducing the time spent to around 10 minutes. Now my body feels achey and weak, especially my legs and an area on my arm. Is this a strong indication that something is in me and I'm herxing? I don't know if you can herx from a detox regardless if you have lyme or not.

Post Edited (mattyb429) : 2/27/2014 10:03:03 PM (GMT-7)

Posted 3/2/2014 4:28 PM (GMT 0)
You can feel bad doing a detox, it releases toxins from your system. I did a detox diet this summer (ultra simple diet) and felt terrible till the last few days, had to do the detox bath every night also with the diet. After the 7 days I felt wonderful, no pain, my brain fog left me and never returned but I quit eating processed foods before the diet and was eating organic.

So yes you can feel bad from it. Drink lots of lemon water and get it flushed out. I would take them every night and do other things to sweat the toxins out. I take a hot bath, unlike what they say to do but I had the habit before finding out I had Lyme.
Posted 3/10/2014 7:10 PM (GMT 0)
I'm making progress.... Sort of. I saw an infectious disease doctor who didn't think lyme was likely given my location (no surprise there) but he did prescribe me a 28100mg trial of doxy to be taken twice a day. I'm hoping that's enough to illicit a response. He didn't seem to think an epsom salt bath could start a herx since I wasn't on abx, so maybe it's just a fluke I got chills the day after... I've been keeping up with my epsom salt/hydrogen peroxide bath as well as drinking lemon water and am considering adding ginger and baking soda to the bath. Still experiencing chills, which I'm convinced is a herx from when I first started the baths. I guess the main test right now will be how I react to the doxy.

Post Edited (mattyb429) : 3/10/2014 5:09:26 PM (GMT-6)

Posted 3/10/2014 7:42 PM (GMT 0)
Matty,

I never really herx since started meds in October. But when I believe I am herxing, I get the chills and bad!

I remember I was at work and I was like "I had enough of feeling like this". I thought it would be a good idea to eat a bunch of cloves of raw garlic.

I went to the grocery store at lunchtime and continued to eat them the rest of the day (My co-workers weren't happy!).

That night, all I could do was lay in bed shaking with chills. I had no idea what was going on, I didn't have a fever or anything so I was like why do I have the chills?

That was before I became well educated on Lyme and herxes. Chills for me = herxing.
Posted 3/10/2014 7:50 PM (GMT 0)

Elleon said...
Matty,

I never really herx since started meds in October. But when I believe I am herxing, I get the chills and bad!

I remember I was at work and I was like "I had enough of feeling like this". I thought it would be a good idea to eat a bunch of cloves of raw garlic.

I went to the grocery store at lunchtime and continued to eat them the rest of the day (My co-workers weren't happy!).

That night, all I could do was lay in bed shaking with chills. I had no idea what was going on, I didn't have a fever or anything so I was like why do I have the chills?

That was before I became well educated on Lyme and herxes. Chills for me = herxing.

It's good to know someone else has experienced it. (As good as lyme can be I suppose lol) I wasn't on any meds when it started, just detoxing but it makes too much sense that it was a herx that set off, not to mention I've also felt much weaker, mainly in my legs. My temperature has been rather low ranging from 96.6-97.8. I wouldn't think a flu bug or illness would cause such a drastic drop in body temp.

Post Edited (mattyb429) : 3/10/2014 1:53:53 PM (GMT-6)

Posted 3/10/2014 8:05 PM (GMT 0)
I believe with Lyme that your body temp runs low.
✚ New Topic ✚ Reply