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?

[Alidora]

Hi Cindy,

On LymeNet, in "General Support", you will find a thread entitled "Success Stories". Lots and lots of happy endings there!

http://flash.lymenet.org/ubb/ultimatebb.php?ubb=get_topic;f=3;t=015820

[cindy903]

Everyone seems in remission on the site. They're all 99.9 or still not 100%. Was hoping someone somewhere would step up and say "yeah, i had it and I'm back to my old self before I had this horrible but curable if treated early nightmare.

But don't get me wrong I'll take 99.9 % if / when I get it.

Right now I'm still sinking awaiting to find an LLMD who can see me. Got someone to give me 100 mg doxy / 2x daily for 6 weeks. It's not working.

Depressed.

[Joyfaithlight]

Everyone is different and people will choose the treatments that  they feel will cure Lyme. Lyme Literate doctors  typically  use IGENEX labs for Lyme testing In fact my doctor never uses the hospital for any tests he apparently thinks he has gotten too many false positives.   If your still ill, I would seriously consider Germany  Many people are cured of Lyme in St. Georg Klinik in Germany. St. Georg that would be my first choice

[Joyfaithlight]

Please realize that a 1.5 billion was given to John Hopkins to do research on Lyme and find a cure. So, I pray that a cure will be found  very soon for all that are suffering from this horrific disease. Follow there findings

[Alidora]

When were you bitten by a tick? Did you get sick right away?

[bruce622]

I'm really glad you brought this up.It reinforces the fact that when I recover from this I need to keep posting and not forget where I came from.Kinda gives me something to look forward to...good health to ya...Bruce

[cindy903]

Late June. Sick about 3 weeks after completing round one of 100 MG Doxy/ 2x daily for 10 days.

Recent positive Western blot...Acute Lyme diagnosis. 100 MG/2x for six weeks...Not working at all. No change - in fact, worse. Insomnia, crepitus, and extremely stiff neck, burning back etcetera etcetera etcetera.

That's why I wanted to know if anyone was healed who happen to surf these boards. Maybe people who are healed don't surf health boards  I suppose.

[Alidora]

Some people with the acute form of Lyme, for some reason--co-infections, weaker immune system, etc.--do not respond to Doxy.

Is there an LLMD that can see you soon? You are not "chronic" yet, so it would be good to have that checked by a professional ASAP. He/she could prescribe you a different abx, maybe 2 or even 3 at the same time. When I started treatment last March, I was taking 3 kinds: Doxy, Zithromax (intracellular abx), and Plaquenil (cyst buster).

"Borrelia changes form from a cell wall state to an "L-shape" to a cyst stage, confusing the immune system and becoming invulnerable to standard antibiotic treatment."  http://iowa.sierraclub.org/lyme.htm

This is why a combination of abx is more effective.

I'm sure that there are people out there who are cured (especially those who never reached the chronic phase). But like you say, they probably don't spend much time on health boards... :o)

If you need help finding an LLMD, you can PM me.

[patsy10]

My personal opinion from my experience is that it is not curable once it is late-stage.  I recovered to about 90% only to have it come back after having surgery.  I think it is treatable and can go dormant but I think it will usually become active again.

[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.

[k2626]

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

Did you test pos through igenex?

[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.

[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

[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]

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

[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

[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

[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

[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.

[PlateletGal]

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

[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.

[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

[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]

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]

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

[patsy10]

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