Have you recovered form Lyme Disease?

[cindy903]

Please give those of us suffering some hope and post something about your recovery. I'm sure we'd all love some encouragement. . .

How long did you suffer? How long did it take to recover? Are you fully recovered?

[JackieCalifornia]

Alidora's posts (above) are from ~2007 ... about 8 years ago.  I don't recall if Alidora is still posting here, but you may not receive a response.  

You may want to start a new message thread here, so that more people who are posting now will see it.  

Best wishes --

[alderuccia]

Dear Alidora, can you tell me  I am very ill Thank yous

[SubLyme]

100Mg's twice a day didn't work for me either- turned out, I needed 200 Mg's twice a day (400 total), plus 3 Amoxicillin, and one Azithromycin to get over the initial acute stage. See if you can find a LLMD to get you on the correct dosage and abx and you should start feeling better soon.

Good luck!

[Kailur]

Hi, I have a Lyme story. About five years ago at the age of 18, in my senior year of high school, I began having a problem: I was sleeping way too much! Although I frequently had trouble waking up on time in the morning, earning myself many a detention for frequent tardieness, this was more extreme. It was the most tired I can ever recall being. I eventually took to sleeping on the couch in my living room. I must have slumbered there once during the beginning of this problem and then turned it into a habit, being so exhausted that I found it easier to crash there than to go up the stairs to my room. The constant sleeping became disorienting, as I would wake up every now and then, sometimes at night, thinking it was morning and time to go to school. When I went to my primary care doctor, I was first tested for Epstein Barr, as I suppose this was the most common cause of tiredness (and swollen lymph nodes!) in people my age. It came back negative. The next bloodwork I had done was to check to see if I had something called Cat Scratch Disease. Apparently, cats may have a certain bacteria living underneath their claws that does not harm them, but when they scratch a person with their bacteria-infested claws, the person can become ill, and apparently can present with the symptoms I had. I knew for a fact that none of my cats had scratched me, but my doctor wanted to check for it since I owned cats. I did not have Cat Scratch Disease, either. So, I was tested for Lyme Disease, and to my confusion and surprise, my doctor told me I was positive for it. I was baffled - as a child, I used to play in the woods all the time and had found at least one tick on myself in my life, but the only specific tick spotting memory I have was from eight years before, and as best I can recall, it was only crawling around on me, not biting. I've never had any circular bullseye rash on my body, either. The only possibility that my mother and I could come up with was perhaps being in some high grass or near some trees behind the high school on the baseball field during marching band camp over the summer. So, I was put on a course of antibiotics (I cannot recall which, the strength, or the duration). I do recall, however, that I think I missed the last day or two's dose. Bad move on my irresponsible teenage part. I continued to be tired and my lymph nodes were still very swollen. So, I went to see my Ear Nose and Throat doctor. Oddly enough, he did not agree with the Lyme Disease diagnoses. Whatever he saw in the lab report did not convince him of this. Nonetheless, whatever he thought it was (which I think was absolutely nothing, because I was never given a replacement diagnoses from him), I was put on a second course of antibiotics (again, no recollection of the details). After the completion of this round, my lymph nodes were an acceptable size, and I was less tired. However, now that I sit here and contemplate over this whole mysterious event, I wonder how long I had the Lyme Disease before I began getting tired, will it ever resurface, could I have some long term damage that I have yet to discover, and is it possible that it never completely went away? When I stop to think about it, a constant symptom in my life might actually be because of the Lyme Disease. Actually, it's what I experienced five years ago: sleepiness! My most common complaint in my life, and perhaps the words that escape from my mouth most often are "I'm tired!" I do not have the same severity of fatigue as back then, but I just love to sleep. For as long as I've been with my boyfriend (which was actually pretty much the exact same time I had the Lyme), I have felt guilty for, and he has been hurt by, my sleeping. If we go back to his house, rather than me being a good girlfriend and being alert, awake, and able to converse with him, I more often than not end up just unintentionally going to sleep. I've had trouble staying awake in my classes, even ones that I like and find highly interesting. My boyfriend has commented that I'm the only person he's ever met that can fall asleep in any position - laying down, sitting up, anything. I enjoy napping during the day, sometimes for hours and hours at a time (not everyday, but probably more often than I should). The only flaw in my theory that my fatigue could still be related to the Lyme Disease is the fact that I have suffered from mental illness since age 10, often I was referred to as suffering from depression, though more recently, I haven't been quite sure what the official diagnoses has been, many terms have been tossed around. Still, though, my main complaint when seeing a counselor or my psychiatric nurse pracitioner, has been "I'm still tired." Twice, it even came to the point of the psychiatrict nurse pracitioner prescribing for me Provigil, a drug to make you less tired. The first time I was put on it, I could not continue because my insurance company would not pay for it unless I was diagnosed with narcolepsy. The second time I was on it, the psychiatric nurse practitioner felt that the hassle of trying to get the insurance company to pay for the Provigil was not worth me taking it, as I felt little benefit from it. Recently, I've become somewhat dependant on caffine pills. I took them for a while about a year or two ago, and now I am taking them again, even though I know that they're dangerous to begin with, compunded by the fact that the caffine pills could very well interact with prescription medication that I am taking. As weird and pathetic as it sounds, I take them when I'm already tired, or I may take them when I have a fear of becoming tired. That is how much this fatigue interrupts my efforts at having a normal, productive life. Since I cannot conclusively blame my being tired on the Lyme Disease, I cannot say for sure whether or not I have completely recovered from it. On one hand, I would be glad if the sleepiness was completely psychological, because it could be something I could theoretically change. The downside to that, is that my track record of being able to change, especially psychologically, emotionally, and behaviorally, is very very very bad. After all, it's been 13 years that I've been going to counseling, and I am still struggling very much. Looking at the other possibility, I could also see where the fatigue being a remnant of the Lyme Disease might be a plus, as strange as that may sound. If that were true, I could finally be freed of the feeling that being tired and wanting to sleep is a shameful symptom of being mentally ill, and that since it would be caused by a disease, it would be proof that I could not just snap out of it and I'm not sleeping on purpose to avoid things. Negative on this side is that if Lyme Disease has still been affecting me all these years, then I might be in for some much more troubling effects of the disease. Well, that's my short yet long experience with Lyme Disease. I wish I had some more concrete and informative things to share.

[kitty9309]

Thanks.
I did find a Lyme forum that has a member that saw my LLMD.
He was on treatments for 8 months, has been off meds for a year and is considered cured. He had great things to say for this doctor.

I do think there is a good chance for my recovery. I will know soon!

[philamp]

I wish you all the luck in world that you will recover completely.  That is a long time to suffer.  Your LLMD will help you and you are only less than two weeks away now from seeing them.  All the best!

Kimberly, VA

[kitty9309]

Wow. I will be starting treatment 14 years after the rash.

[patsy10]

I think your chances are better.  I started treatment 15 months after the rash.

[kitty9309]

It is great that it was caught early. You have a good chance of total recovery. I am sure others will weigh in.

[philamp]

Hi Kitty,

I dont live too far...Williamsburg Virginia.  I do see there is one in Vienna from the ILads
website.  I obtained the name just in case I need it, but hopefully dont.  My doctor says I caught this early, but I am still so worried because I am not better yet, well better but not the way I was before July.  About 70 percent better thats about it.  Just kinda curious how everyone else responded to antibiotics when and if it was caught as early as mine was.

Kimberly, VA

[kitty9309]

I can't answer all your questions yet, but do you live in Northern Virginia by any chance. I am in the DC area with an appt to see a LLMD in 3 weeks.

[philamp]

Everyone on this board seems to have seen and LLMD or has seen doctors that know a lot about Lyme disease and different treatments.  Can anyone say whether the odds or getting completely better are really good after only having it a little over three months before treatment began?  I still have the excruciating headaches that were the first clue to me that something was wrong back in July, the only difference is the head and facial pain has gotten less and the really bad headaches are more spaced apart since starting the doxy, but the tingling and numbness started 15 days into treatment, and it includes the face sometimes.  My mom, a RN, says its the antibiotic side effect because in her merk manual it says doxy causes increases ceribral hypertention...which can cause tingling and numbness similar to feeling with migranes.   Any thoughts or has anyone here had it for a short time and pretty much completely recovered?  Also anyone familiar with western blot,  I only tested positve on one band, 41 IGM,  is that a sign of only present infection and not acute yet?  Go back to doctor Monday for second 15 day follow up, but anyone familiar with test that can help with answers, I am so scared of this disease and all that I have read.  What are the odds of beating it after having it less than four months, good or bad?  Anyone that has any advise or insight please let me know.  Anxiety is building and just making things worse...

Kimberly, VA

[cindy903]

Back to square one. I was so ill on doxy -- ready to check in to a hospital -- that they took me off. The 400 mg proved too much for my stomach and I could not function.

When I got off, I regained my energy and my appetite. But I have to wait about 10 days for another prescription.

I have to see the doctor first. I don't know why.

Impatient to feel better. But the antibiotics are killing me.

[PlateletGal]

There IS hope. I'm even seeing people on the treatment protocol that I was doing with chronic lyme disease recovering.

[patsy10]

I would guess your neighbor is having the lumbar puncture done to rule in/out MS.  Her symptoms could be lyme disease.  They fit.  Fortunately you got diagnosed so hopefully you will recover completely.

[philamp]

Was bit by tick in early June and had small rash and dismissed it as nothing. At that time I did not know how prevelant lyme disease was in Virginia.  Around two weeks later I went on vacation and experienced worse ear pain ever...lasted about a day or two and faded.  Then around July 1st I started having nausea and head pressure.  Went to physician and they said they wanted to investigate nausea and I ended up at a GI specialist..before I got there the headaches began.  The worst ever.  I had never had a history of migranes or anything in my 43 years.  The pain was so intense and raidated through jaw and ear and behind the eyes and in my nose there was constant sharp shooting pains on most days.  This continued for most of August.  GI specialist ordered sinus xray...in two weeks I was told I had sinusitis.  Started on Azithromicin.  Things improved until I stopped taking it....then symptoms bad again.  Was given second antibiotic, Omnicef...got better then worse again.  It is now September 10th.  My neighbor comes over, who is a doctor for VA hospital, and informs me that she was in hosptial three days the previous week, and they were trying to figure out what had happened to her, she had had a mini stroke and an mri had some strange findings on it, finding that suggested LYME.  They did a test and she was positive.  I was mortified, I then remembered my tick bite, and immediately went to be tested.  I was positve on P41 IGM.  My doctor started me on doxy and I have been on since almost a month now and he plans to continue more.  I would say I am 70 percent better.  The pain has decreased but is still there slightly and numbness has started in hands, face, and legs.  This has been mild tingling and numbness...I just keep taking the doxy and thankful the pain is not as bad.  Three and a half months I went without knowing I was infected....Am I going to beat this?  I am praying that I will.  How much longer on antibiotics do you think I will need to be?  It has only been a few months for me.  If not for my neighbor I would not have been treated or even known I was infected.  My neighbor, thinks her mini stroke was not beause of her accidental finding of Lyme by a doctor and she is a doctor.  Yet she is going for a
lumbar puncture this week,  I ask her if they thought lyme was in her nervous system she said no thats not why they are doing it.  I think she is either not telling me whole story or she truly is a nut.  I think the two are directly connected.  She says she has no other symptoms of lyme...no pain and her stroke symptoms are gone.  She only did two weeks of doxy...two weeks!  Anyway I hope you are better and any advise you could give me would greatly help.  I seem to have a great doctor who is willing to keep on treating.  He said he treated someone with lyme that had it over a year for three months of antibiotics and they are fine.  That is all I really have to go on right now.  But I am scared, and I really just hate myself for not going to doctor right after tick bite and subjecting my family to my pain for so long before realizing what it was.  Thank you for
listening.

Kimberly, VA

[cindy903]

Thank you Stacey. You're right on the money. I just got my dose doubled by a doctor who in fact treats many with Lyme.

Sounds like you've been through an ordeal. I'm so glad you're past the worst of it and got your life back.

Thanks for giving me hope!

Cindy

[SOONERMOM]

If I read your post right, you are only taking 200mg of Doxycycline a day, right?  If so, then you are  being undertreated and should be taking @ 400mg day (if you can tolerate it).

I  know my LLMD recommends that once you aren't improving on a certain antibiotic, that you move on to another one.

You could also be dealing with a co-infection that isn't treated with doxycycline.

I guess either way, you need an LLMD to evaluate you and get you back on the right track.  

I also started on the doxy 100mg  twice a day until I could get into see my LLMD.  It took probably over a month before some of my symptoms got better.   Most of my symptoms were neurological until the very end when I finally developed the joint pain.  The joint  pain actually got worse when I started the doxy .  I am now on zithromax and I also took ceftin briefly.

I would say that I am at least 85 - 90% better and I think my family would agree.  I still have  some residual numbness, but wonder if it is permanent at this point.  I can live with that.   EVERYTHING seems manageable to me and I really can't complain.

I started  getting noticeably sick 10/07 and finally saw an LLMD in 5/08.  Because of my test results (#31 was ++++) some have told me that I had it at least a year.  They also found brain lesions right off the bat, so I probably did have it for a while before 10/07.  We had moved to a house on acreage in 2005, and I was bitten by numerous ticks since then...so it is probably impossible to say for sure when I was infected.

Anyway, you shouldn't give up hope yet!!  There is most certainly an LLMD out there that can improve your situation.  It's going to take more than just 6  weeks of doxy at 200mg/day.

Stacey

[WillPower]

Candida manifests itself by weakening the immune system, IMO.  For me it was white thrush on tongue, pruritus, pain in back of knee when I stopped Tx, continued Lyme symptoms which were unique to me.  It was so long ago, I do not remember the specifics.  

I do not recommend doing my fasting, probiotic method very long if you are in ill health.  It should be done with a Lyme doctor involved.  Lyme doctors are open minded, and understand the effects of antibiotics.  Other doctors are influenced by the anti lyme propaganda.

Sorry to take so long to respond.  I just added this string to my watch list.  

Al

[k2626]

What symptoms of yours do you think were related to candida? I have thought of this too....maybe this could be part of my issue but I do have bad pains, so??

[WillPower]

I could not walk for a solid year with Lyme.  I took doxy and minicycline for ten years!  My doctor, Paul Lavoie, died so I needed to start over with "re-thinking" my situation.  

I speculated that I might now have Candida as the main problem since it has similar overlapping symptoms.  

Do not do what I did, but I veg-juice fasted, lost a lot of weight, simultaneously flooded myself with probiotics for 6 weeks!  Very unsafe because I lost a huge amount of muscle weight (looked like a refugee).  When I restarted eating, I did it by gradually adding very, very few carbohydrates, but only low glycemic index foods, of course!  Candida loves sugar and hates probiotics since Candida is anaerobic and probiotics are aerobic.  Probiotics eat Candida, by the way.  

I stopped fasting after four weeks, and in a day, symptoms reappeared, but very mild intensity.  So, I continued another two weeks and the Lyme symptoms TOTALLY were gone.

Recently I was bitten by a tick, got the ecm, started doxy immediately.  I have several symptoms, but they are gradually going away after ten days since the bite and taking doxy.  I will take doxy a few more days just to be sure.  

If anyone knows who are THE quality Lyme doctors in the nation, please tell me, just in case I need more advanced treatment for the current infection?

I hope this helps,

WillPower a.k.a., Al

[cindy903]

Don't think the positive test was Igenix. It was a Western Blot at a family practice so most likely it was LabCorp, but I'm not sure.

The doctor was surprised as no one suspects I have Lyme as I look pretty robust -- a little plump I guess. But she said You have acute lyme disease. I just cried -- as I knew it all along and it was a relief almost to know why I feel this way.

I will post my other symptoms in a separate note to you.

[k2626]

What have your symtpoms been and  how long have you had them before getting doxy?

Did you test pos through igenex?

[cindy903]

Thanks Alidora -

Why not remain cautiously optimistic of a recovery?

I guess I've never really felt quite like this...pretty weakened actually.

Maybe the Columbia U. research will bring answers and hope for this odd disease of so many contradictions, it makes one's head spin.