help me!! Lyme is killing me!

Hi marchcat,
I exactly know what u re talking about, especially about the weakness of the back and legs. Sometimes I have a feeling I don t have enough strength even to walk. And the pain of joints and muscles is almost all the time there, is very annoying and depressing. To introduce myself ,I am 22 years old girl with similar story than yours. Depression could be really bad, when u start losing hope to ever get better. Feeling like u re living a nightmare and asking a question what happened to your life. I know all this very well, many of us do. For me the most difficult is to accept that I am not healthy and it makes it really tough to fight and stay positive.
But there are so many of us, lyme is nothing rare, so many people got better and it is possible, we just need to find out what works the best for us. Sending all possible support to you. Sorry for my English :)

Hey marchcat,
Good idea to reach out and get support! You are not alone -- many here are or have been where you are now. You will get through this.

If you haven't already, you need to step up your detox regimen. Details are listed in the "New to Lyme?" thread at the top of the forum. I know some of it sounds silly, but it really does work.

When I couldn't eat, I found smoothies were the best thing. You can put protein powder in there to add a needed kick.

Make sure you are taking your meds with food; it helps with the nausea. You can experiment to see what holds it down best.

Keep plugging away at this, you will turn the corner soon.

Hi marchcat. The vomiting is kind of unusual and makes me think you may have some sort of parasite. Ticks van carry so many different infections. One of the popular Lyme drugs they use for Lyme cysts Tinidazole is a very good drug for parasites. I was given it back in the '90's when it wasn't even approved yet in the U.S. for parasites as an alternative to Flagyl. Maybe you can discuss that with your Lyme doc. There are also natural parasite cleanses like Humaworm you can look into.

Were you really on 500 mg. of Doxy 2x daily?? When I was taking 200mg. 2x daily I was so severely nauseous that I had to step it down. Can't imagine more than double that.

You are not alone. I was also diagnosed in August and put on Amox. Though I think mine is 875 every twelve hours. I felt okay a couple days after starting it and then went downhill. Then the symptoms started to come and go in waves. I would feel terrible for a few days and then start feeling better for a few and then feel terrible again. I don't know if that's a good sign, or bad. The only highlight was there were two days in the middle there where I felt like my old self.

The past week has been awful. I had my period this week, so maybe it was that. My acupuncturist, who also has/had Lyme, said people tend to feel worse when the seasons start to change. So maybe it's several things on top of each other.

I wouldn't classify my symptoms as flu-like, but I do have headaches, head pressure, brain fog, neck pain/stiffness, muscle pains, joint pains, back pain air hunger. Last night I felt tingling up my back. I wake up several times in the middle of the night plus am having weird dreams. My more serious symptoms, at least for me, has been upper abdominal pain on both right and left side, digestive issues, constipation, and lack of appetite. I've lost about 30 lbs since June because I've changed my diet drastically and am eating a lot less. Plus I have terrible almost debilitating anxiety attacks whenever I get into a vehicle. Ended up in the E.R twice because of it.

I think when You're dealing with this many issues for a disease that most doctors refuse to acknowledge or treat properly, then that can put doubts in your mind. I've gone through days when I cry all day because I think I'm not going to make it through this. Sometimes I question whether I have Lyme at all cause my LLMD clinically diagnosed and doesn't bother with testing. I have an endoscopy scheduled in eight days and I'm terrified that they will find cancer or something.

It's all extremely overwhelming. There are days where I feel like I'm not going to make it through the day but then I do. If you need to talk feel free to email me, I check it regularly since I'm home all day. Sometimes it helps just to talk to someone. Which is why I love this forum. Everyone is so helpful and nice. It has really gotten me through my rough days.


Cranberry 22- I am the same way. I cut my diet way down. one thing that has helped is a Lyme cookbook my mother bought me. Their website is recipesforrepair.com . It goes in stages, where you start by cutting out foods that can cause inflamation, sugar, milk, gluten and such. Then slowly re-introduce foods over several weeks. It's a good starting point and gives you an idea of what you can probably handle.

Post Edited (Cheetahjade) : 9/21/2014 9:18:20 AM (GMT-6)

Hi lymebabe
It is so refreshing to hear you are 100% better. I keep asking if it's Lyme I'm fighting but all my blood work is perfect. I will deff give the colonics a try! I have an appointment with the infectious disease doctor next week..then will begin looking for an llmd! Thank you for the advice..and am starting to feel hopeful. :)

Yes, that 'fluish' feeling is quite normal when you have these infections. Some people will also have throat pain due to the lymph nodes swelling as they get clogged with debris. There are things that you can do for that as well, though. The members here have a lot of collective knowledge!!

Be sure to ask any questions that you may have!!

Do you need help in finding a LLMD? For information on finding one in your area, you can start a new thread titled something like:"Looking for LLMD/LLND in the _______ area." Although you will need to enable your email option in your profile in order to receive any recommendations, as we don't allow doctor's names and contact info to be posted on the forum for several reasons. You can enable your email option in your profile, under 'edit profile'. Be sure to click the submit button to actually save your preference.

You can email Stephanie at: stephanie@turnthecorner.org You can also go to: www.turnthecorner.org/ if you want to learn a little bit more about Lyme Disease.

You can also go to The Lyme Disease Association and search for LLMD's 3 times in a month. You have to register first. Here is the link: www.lymediseaseassociation.org/index.php?option=com_content&view=article&id=277&Itemid=74

​ You can also now email TBDA (Tick Borne Disease Alliance) at medicalinfo@tbdalliance.org​
​ and ask for LLMD referrals also.
​

You will want to find an ILADS (International Lyme And Associated Diseases Society) trained doctor, as ID Docs (Infectious Disease Doctors) believe Lyme is hard to catch and easy to treat, and don't believe in the reality of chronic Lyme. Go to the ILADS site to read the new (2014) Treatment guidelines to get you started on your Lyme journey.www.ilads.org/lyme/ILADS_Guidelines.pdf

I had severe nausea and I dry heaved so violently every morning for months. I lost my appetite, lost a ton of weight. I had a sudden onset of extreme anxiety, ocd episodes, feeling psychotic. I Can't tolerate any meds now. I had a ton of other horrid symptoms, which I won't even get into. But there were days I just didn't want to be alive.

My body couldn't tolerate any meds so I had to stop treatment after two months. I've made very, very good process just by detoxing. Far from normal but much, much better.

Don't get depressed or discouraged. You came to a place where most felt close to death and now are back to their normal life. Some have left the post to continue life as they knew it before lyme and some have stayed to help us through these difficult moments. God bless them all. There is hope, cheer up!!!

To put into perspective I could not go to a restaurant at all for months because nausea was that bad and no appetite. I couldn't even sit there I would be that sick around food. I can now eat out again, which I thank God for!!! I have mild nausea on occasion when I wake up but it's much better and glorious to enjoy food again.

I also found organic ginger candies and peppermint candies to be helpful which I nibbled on all day. Peppermint tea worked well, if you can't tolerate the ginger.

Borrelia may not show up in blood tests because it is either too new or too old. It is also cagey and can hide in the tissue. Blood test will only catch it if it is actively circulating at the time the test is taken. So having "clear blood work" is pretty meaningless. Clearly you feel awful, so something is wrong. Do you know when you were bitten, or is your diagnosis clinical? In other words...how long ago do you think you were exposed. The length of exposure can have a huge impact on the type of treatment protocol to use.

Amazinv how so mang of us have to avoid restaurants now and significantly changeour diets