Will I ever feel better?

[lene54]

I was diagnosed with RMSF last month.  I had showed my dr a bad bite last May.  I returned to his office with all kinds of symptoms 17 times before being diagnosed.  I have taken 3 wks of doxy.  I can't begin to tell you had much worse I got.  I have felt like I have the flu with awful headaches for over a yr.  I have no idea if 3 wks of doxy is enough.  I don't feel much better than I did before I took them.  I don't feel like doing anything, but I force myself.  I am beginning to wonder if I will ever feel better.  I know I had this over a yr before beginning treatment so it might take longer to recover.  I go back Aug 21st to have blood work again.  Does anyone know if I will ever feel better?

[JackieCalifornia]

It's a good group here, and we're glad to help however we can.  You might look in both Alabama and Georgia for Lyme docs you can get to.  Once a diagnosis is made, the frequency of appointments falls to maybe once a month, and may last for a year -- that was pretty much my experience, but everyone is different, just as the infections vary and need different treatment.  I had Lyme and babesiosis (like malaria, but carried by the Lyme ticks), but others have different assortments of infections.  Hang in there, and keep us posted -- best wishes!

[lene54]

I live between Birmingham AL and Atlanta, GA. Thanks for all your comments.  You have really taken a lot of  time with your replies. They are very detailed and helpful.  It is so good to have someone to talk to about this that understands it.  

[JackieCalifornia]

As posted above, I would seriously find a new doc for a second opinion.  You do not need to tell your current doc you are getting a second opinion, and indeed it may be prudent not to do so.  There is a war in the medical community over Lyme and the other tickborne infections, and the patients are the ones having bad times.

Your bio doesn't say what area or state you live in, but if you tell us that, we could perhaps give you some leads.  I saw 20 MDs before getting a diagnosis, and even the one who diagnosed Lyme and a co-infection didn't know to do then.  So I found a Lyme specialist and got well.  It's worth the effort.  

Let us know how we can help.  We've all been through some version of what you are going throughj.

[lene54]

First, I am so happy for you.  This is a great accomplishment. I know when I got the tick bite.  It was in May last year.  I showed it to my doctor, but he didn't realize what it was.  When I read I could have been well in a few days if he had, it is so hard to deal with.  Has anyone that has lyme also had or have bumps on your tongue?  I have had this for 6 months.  They came right after I had my worse symptoms.  I have taken so much anti-fungal my legs are blistered.  They are still with me.  I don't know what else to do for them.  I went to a infectious disease doctor before I found out I have RMSF. He did not discover the RMSF.  He said my IGG subclass levels were low and had me to do 3 injections IVIG.  These made me so much sicker. I now wonder if these levels were low because of the RMSF. I had blood work last Monday to see if these levels have change.  I have to go to see the ID doctor tomorrow to get the results.  I don't know if he has any idea what to do for me.  I'm going to tell him about the RMSF.  I feel like he will be negative about it.  I will have to be making decisions about the right direction for me to go to get help.

[pipergirl614]

I have no idea how long I might have had it.  Symptoms started presenting themselves (swollen knee, swollen ankle) in 2012.  Was misdiagnosed with RA and put on methatraxate which is an immune suppressant.  I think that's when Lyme reared it's ugly head.  I hiked and backpacked all over California, Montana and British Columbia and never had a tick (I'm a tickaphobe and would have remembered).  I was miserable for about a year on antibiotics and at my worst, had extreme fatigue, brain fog and horrible arthritis in my knees, elbows, wrists and fingers.  The backs of my hands looked like there was a half a boiled egg under the skin.  I had terrible herxes and, looking back, am not sure how I survived and kept on working.  I lost weight and had no energy to go anywhere, but if I did, I would get lost going around the block.

I remember showing up for my new job with an ankle brace, knee brace and cane in the fall of 2012 - was diagnosed December 2012 and arthritis free (for the most part) by March of 2014.  I can climb stairs now and get out of a chair without having to heave myself up groaning.  The first few months of antibiotics were the worst, and then it just generally stayed the same.  Had one breakthrough with no arthritis for 3 weeks in the fall, but it came back.  

I'm working on getting my energy back, building my resistance (I get every cold and virus that comes near me) and strengthening my knees.  It's slow (I'm 65) but steady.  Yes, I believe there is a cure, or at least remission, from Lyme.  If you look in the archives, I think I wrote a post almost exactly like yours last year.  Sending you, and all who are suffering, my warmest thoughts.

[lene54]

Oh my, I was on doxy for 3 weeks and have had so many side effects.  I can't imagine 14 months.  How long do you think you had this before being diagnosed? That is great news for you. Thanks for posting.  You give others hope.

[JackieCalifornia]

That's terrific!  Congratulations to you, your doc, AND your immune system!

[pipergirl614]

I am one of the lucky ones.  No co-infections.  My LLMD had me on doxy and cefdin for 14 months plus herbal suppliments.  My arthritis went away last March and I am still symptom free.  Now working on getting my energy back.  Yes, you can/will get better with the right doctor and right treatments.  Oh, and wow!  Is it ever nice to have a brain again!

[JackieCalifornia]

"What would a lyme literate doctor do to treat me besides giving me doxy?"

A Lyme-literate doc (LLMD) would take a careful history of your illness and symptoms and based on that, would order some diagnostic (blood) tests to determine what infections you may have.

There are a half dozen infections the 'Lyme' ticks can carry in various assortments, and the overlap of symptoms is confusing to docs who do not specialize in this area, and unfortunately docs do not know their own blind spots.

There is a serious split in the medical community about how serious Lyme is or is not and on how to treat it with what meds for how long -- the one single best piece of advice I could give is to go to an MD who is an ILADS member.  It is not necessary that a doc BE an ILADS member, but it's a good indicator that they understand what the possibilities are for diagnosis and treatment.

Your bio doesn't say what area of the country you are in, so can't recommend what local support groups you might look to for suggetsions on a local doc.  If you send an email to -- contact  [at]   ILADS  [dot]  org -- and tell them generally where you live ('near Toledo OH') and how far you can travel, ILADS can send you names of local Lyme docs.

Lyme is a fast developing area of medicine, so not all 'Lyme specialists' are equally good, but you gotta start somewhere.  Some infectious disease and rheumatologists are okay, but as a group, they are *not* going to diagnose and treat Lyme and its coinfections the way an LLMD will.  There is no one single quiz question to ask a doc if s/he is an LLMD, and indeed, many will say NO even if they do practice according to ILADS guidelines.  LLMD is patient slang, not a degree or title, so we are all reduced to figuring it out for ourselves case by case.

If you can find a Lyme support group in your area, that could be a very good source to help you find a Lyme doc.  Word of mouth is very important in this situation.  

We do not post the names of LLMDs here in the open, to keep the local and state medical boards from going after them for practicing according to the ILADS approach, but we can communicate here through private messages, which is why you won't see posts like "Go see Dr XYZ in Toledo".  

I would, in your situation, find an ILADS-type doc.  Let us know how we can help.  Take care!

[Murphgolf]

Unfortunately, there is no correct answer to when and how long. That's the frustrating part.

We have become accustomed to getting a diagnosis, treating then knowing what will happen. That is not the case in this case, if it is Lyme Disease. It seems to be the most misdiagnosed (and under diagnosed) one out there.

I have had headaches,on and off, for more than 12 years. And like you, no one believed me or would listen. I was told to see a psychiatrist. But I KNEW something was wrong. Took 10 years to get a diagnosis.

An LLMD usually knows it takes more than Doxy or just one antibiotic. Or supplements, or..... Most doctors are ignorant to Lyme and just tell you it's in your head. An LLMD has a better chance of understanding and trying different approaches. Insurance often does not cover what you may need. You may also need further testing from IGenex, which is better and determining Lyme than other tests.

As more people jump on this thread, they can help more. I still lean on a lot of people on this site. It is where people understand because they are there or have been there.

Hope you get answers you need.    

[lene54]

Thanks so much for your comments.  I know so many people are experiencing what I am, and they feels so alone, as I do.  I feel like my family and friends really don't listen anymore.  They have heard me say I'm sick, my head hurts, my legs hurt that they don't pay much attention to it anymore.  I don't know why I continue to say it, except that I feel like I'm going to explode, if I don't tell someone how bad I feel. It's been so hard to go on with life, when I feel like this.  I knew I was sick for over a year, without knowing what was wrong with me.  I really thought I might die. My son didn't want me to talk about it.  He thought if I didn't, somehow I would get well.  If I had not talked about it, I would have never found out what was wrong.  I talked to a friend that has lyme disease, and she told me that she thought I had it.  I had already been tested by a ID doctor for lyme.  I asked my GP to do a lyme test and he also checked for RMSP. It showed positive for RMSP and that it is active.   Now that I know, and have started treatment, I have been so much sicker. The 2 wks I took Doxy, I felt so sick.  I thought I was going to have to go to the ER on two occasions. My doctor told me it was the die off . Then after I stopped, in a couple of days, I actually felt better for a few days.  It went away, and my doctor decided to do 2 more wks of Doxy.  I was only able to take them one wk.  I was in bed unable to function.  Can anyone tell me why a week after I have stopped taking antibiotics my legs are still so sore and aching?  I hear everyone talking about toxins being released.  How long should my legs continue to ache? Does anyone else have the awful headaches?  Also, in the afternoons I have pressure headaches and  become so nervous.  It lasts for 2 to 4 hours.  I have stopped planning anything in the evenings or nights.  I am so exhausted at night, I have to go to bed. I have been dealing with this for over a year too.  What is causing these headaches?  This is why I ask the question will I ever feel better.  It really doesn't seem like it at this time.  What would a lyme literate doctor do to treat me besides giving me doxy? Please if anyone can help me understand what I'm going thru, and if there is anything I can do.

[Murphgolf]

I can tell you many of us have had the same thoughts you are having now - wondering if you will ever get better. I am there now, but the key is to bounce back and believe you will get better, as many, many people have.

It is natural to get "down," and if Lyme is involved, it can assist in getting down with psychological symptoms.

So, the same question you have put out there is only natural to feel. The key is not to get buried in that feeling and believe you will get better. Finding the key to better health is the hard part.

But, since so many people have gotten better after years of feeling bad, there is hope. Perhaps some of those who have been there and feel healthy again cane jump in on the conversation.

[bdonahue7]

Yes you will feel better but you probably need more treatment. I suggest you find a lyme literate doctor in your area and start treating before things get worse. Best of luck