Frustrated with getting no answers!

Here's my story to date. Back late last Aug I had found 2 deer ticks dug in on me over 1.5 week time frame. about three weeks later I had started getting flu like symptoms and didn't think much of it at the time other then I must of picked up a bug. Also started feeling tired a lot.

I had the stomach pain along with constipation on and off over 2weeks. Then the headaches started in Oct and have been having them ever since. The headaches started out having them almost every day for at least for a part of the day. Now I still have them but now some weeks almost everyday and some weeks just 2-3days. I saw a doctor in Oct who told me I just had IBS.

Soon into Nov my ears started to ring (both) along with getting dizzy spells to go along with other problems.

In Jan the chest pains started along with 2trips to the ER thinking I'm having a heart problems. Ran all kinds of blood work, CT scan and xrays and everything came back normal and doctors told me they can't find anything wrong. Also had my ears looked at and again no answers. Also this is when the buzzing feeling in my body started along with finding it hard to sleep some nights and waking up with the chills/teeth chattering. Still have the other things going on on and off still.

In Feb is when the stiff neck started and had some twitching in my one leg on and off for a few days for a few weeks. Saw doctor again and this time tell me it's heartburn and I can't have lyme do to the blot test being neg from back in Jan.

March-today the stiff neck has gotten worse and chest pain is back. Ringing in ears has gotten worse with ears now having pressure/poping. Now fingers joints are sore (left hand more then right) along with left elbow being sore. All other things still going on. All things seem to be on and off. With the ring in the ears being the only thing that never goes away along with feeling tired and just not normal. Some days aren't to bad well others are hell. Haven't felt normal since last Aug/early Sept. I'm almost positive I have lyme as I never had a health problem tell after being bitten by the 2 ticks last Aug. frustrated that no doctor seems to want to help me or listen to me.

Welcome to the forum!

Sorry to hear but sure sounds like Lyme to me. Start a new post entitled, Looking for a LLMD in city, state that you live in. Also go into your profile and enable the email so we can click on the little envelope under your name to reply to you.

Also read the first post, New to Lyme, there is a ton of information that will be very helpful for your healing. You want to start detoxing right away, this will help get rid of toxins in your body, part of why you feel so bad. There is detox info in the first post. Also clean up your diet, no gluten, dairy, sugar, they cause inflammation.

Hope this helps and hope you feel better soon.

Good news is I found a LLMD but bad news is wont get in for 4-6weeks. Also got a new thing happening to me...have been getting inner tremor feeling at night a few times the past week. Anyone else get this? Tired of feeling like a yoyo..feel better one day and feel worse the next 2.

Glad to hear you found a LLMD! 4-6 weeks is rather normal, LLMDs often have waiting lists. So hold on, you'll be getting help soon!

Thank you for the feedback. I ordered Japanese Knotweed, cats claw, Eleuthera, Astragalus and Ashwagandha yesterday.

Yes I'm going to start low and one at a time per week. Been drinking lemon water and taking baths almost daily now.

Is anyone also taking garlic? I'm thinking of taking garlic as well as I have read it helps keep ticks away. Seeing I run my own business as a maple syrup producer and beekeeper I'm in the woods/field all the time and maybe garlic will help. Also have read about bee stings and maybe the stings I get now will be good (free help).

Again thanks for all the info/help

Started with Cats Claw and Ashwagandha today. Will start with this for the next few days before adding another. Do have a appointment on Monday as my normal Dr what's to look into if more test for cancer should be done...this has me a little scared. Will still be a good 4 weeks before I can see LLMD.

People don't go from normal, healthy and active to having all the myriad of seemingly unrelated symptoms that go with Lyme. Yet the doctors look at you like you are a kook. I was fortunate that since my WBC was 28,000, so my pcp who had only seen me one other time knew something was wrong. He had no idea what, so he just scratched his head and sent me to one specialist after another. Even for a bone marrow biopsy which was negative of course.

I ran low grade fevers, initially had red spots all over which appeared to be an immune response but I was hospitalized for RMSF and sent home in 3 days with no diagnosis of anything. I had the classic bullseye at the top of my thigh. Ignored by the ID doc who was consulted.

The buzzing. trembling was continuous. My heart was racing when I was sleeping and would wake me up. I was in my 30's and went from healthy active and strong to curling up on the sofa daily. Getting lost just driving my children to school. And on and on......

This was only a small amount of my symptoms. It was 1988 and I knew nothing about Lyme other than one magazine article that included all my symptoms, but no one listened. I was scared and had no idea what was going on.

Two years later I read a book on CFS and one of the contributors was an ID doc in my town. I went to him and within 15 min he stated it sounds like Lyme disease. I had not mentioned Lyme to him at all. He said he would need to test for lots of other things to rule them out first. All negative, and I was started on Rocephin for 3 weeks. I did improve and had a strong Herxheimer on day 3 of treatment. However 3 months later, I had a feeling of the symptoms reoccurring. He stated it was probably too little, too late. My insurance cancelled,I could not afford to continue with the ID doc, so my pcp just treated me for years with Doxy when the symptoms return, every several months. I feel that I was so fortunate to find that ID MD who acknowledged my symptoms and validated my theory that it was Lyme. Also for my family doctor who knew little about Lyme but would write the scripts for Doxycycline every few months. Too small of a dose to take care of it, but enough to help my irregular heartbeats, joint pain that moved through my body and general feeling of being really ill.

Now at least there are LLMD's if you have one available. And the doctors know so much more now and treatment is longer and stronger. I am so glad for you that you are able to see an LLMD, yes your symptoms do point toward Lyme. May you have the best treatment and begin to heal quickly.

Linda

I'm so sorry you were told such untruths. I healed from 40 year old infections, and did with herbs only, no pharma abx.

My first questions would also be about detoxing. Are you detoxing? If so, what are you doing/taking to help your body detox? And how often do you each?

You should also know that detoxing too much, too fast can create quite a bit of misery as well.

Your symptom progression seems to indicate that the infection(s) are progressing, although I'm basically guessing as you didn't include enough information in your post for us to really know.

In your previous post you said you had started Ashwagandha and Cat's Claw. Have taken anything other than that?

If you could answer those questions, we would have enough information to then make suggestions that would be much more appropriate for your current situation.

Just me personally, I'd start on antioxidants and continue detoxing before I jumped on herbs or medicinals that may cause more oxidative stress.

In the short term, I'd decrease nitrogen intake which is in meat, caffeine, and beans. The more nitrogen you eat, the more water it takes to eliminate it. If constipated, this could be the reason. Ringing of the ears is nerve damage from oxidative stress. You'll need to read up on the methylation pathway.

Chest pain can come from too many metals. Studies have shown that chelation therapy can decrease chest pain by 37%. Your LLMD should get you headed in the right direction.

Traveler said...
On the other hand, all those symptoms can be caused by these infections and not starting back on anything to treat the infections will only cause more issues, especially since he has already been scoped only to find that everything is fine.

And many times those of us with these infections have low stomach acid, not too much stomach acid - so acid blockers don't help and can sometimes make matters worse. I would suggest that you check out some at home things you can do to check to make sure you actually aren't dealing with low stomach acid: hansacenter.com/simple-at-home-test-for-low-stomach-acid/

Symptoms that come and go indicate Lyme, not functional issues.

Thank you for the info and will give that a try tomorrow morning. Did get my blood work back that was for lupus, connective tissue disorders and rheumatoid arthritis and that came back all good and normal. Next step is checking with a clinic in Minnesota that treats for Lyme and may have some coverage there or else will finally have the money together to see a LLMD in Fond du luc as soon as I can.

Also for me it seems always worse at night. To the point symptoms wake me up and it takes hrs to get back to sleep. Do others have this as well? Also the days I feel really run down I still feel better if I can keep busy vs just sitting on the couch or in bed. The last couple days now the light headed feeling/fog has been back along with just feeling weird in the head.

I would like to send you a email to hear more on your thoughts. Could you shoot me a email as I'm not able to send you one from here.

Here is a update for me. As posted on another thread I finally got in to see a LLMD last week and finally feel I might be heading in the right direction. Been on treatment for a week now and having more muscle sorness and joint stiffness in wrist and fingers along with the pain/discomfort in left chest. Not sure if this is a sign the meds are starting to work or not but will be happy the day I never get the chest discomfort again as that's the one symptom that freaks me out the most.