posted
The last few days I've felt rather depressed. I was symptomatic with Lyme for 2.5 years before getting diagnosed in Nov 2005 with Lyme/Bart/Enlichria. But those 2 or 3 years untreated gave the Lyme much time to get entrenched in my immune system. I've done a few different protocols (Biaxin/Plaquenil, Tertracycline, Ceftin/Ketek, and minocycline). All of these supressed some of my sytpmtoms so I am functional but none actually really made me any better. I'm now on my 6th week of IV Rocephin and just yesterday added Rifampin but even with 6 weeks of IV I see little improvement. I will add that I'm a marathon runner (serious runner for 20 years and done 10+ marathons) but now I can only walk because I become most symptomatic after exercise. I have only CNS Lyme. My most frustrating symtoms are this pressure/buzzing in the back of my neck/head (this sounds mild but it is the worst!), a loud neck creak everytime I turn my head to the right, fatigue and headaches. I also have mood issues when I exert myself too much. I'm scared I'm never going to make any progress. I had such hope with IV due to it's ability to cross the bbb which is really required in CNS Lyme. Will I ever run again...will I ever feel myself again...will I enjoy my life the way I used to??? Sorry for the long post.
Posts: 90 | From massachusetts | Registered: Aug 2006
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Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
Hi Scottie,
I don't have all the answers -- but I hope you will feel better with continued treatment! It seems that neither do the experts (have the answers at this point in time and research, that is).
On a hopeful note, many lymenetters posting here, as you can read, made significant progress after several years of treatment. You might want to check in with Lymetoo and the other veterans who have been dealing with this for years.
So, all I can offer is some encouragement, that we need alot of patience for this disease, as over one year of treatment may not be enough and you may have much progress yet to come. I hope you have a doctor that you feel confident in. My best wishes, VL
PS: if you have not already tried adding the Buhner herbs, I think that has helped to enhance or fortify my improvement from abx.
Posts: 2557 | From home | Registered: Aug 2006
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Sounds like we are in the same boat. I am into month 13 of treatment. Mostly CNS symptoms, no real joint stuff but my nerves are affected throughout my body.
Neck, jaw, teeth, eyes and head are source of most pain.
So here is what keeps me goin. The ILADS guidelines say to treat from 1 to 4 years. (We are'nt even half way point. Dr B said he saw the worst of the worst and the average time to wellness for him was 3 years.
As far as abx, I was on orals for 8 months including Biaxin and doxy. then after 3 months rocephin lost my gb and symptoms went crazy after (month 12).
I am a 9 days into IV Zith/Mepron. The mepron really made me feel different--better in the head. Now on day 9 though I am herxing and whole body feels like hit by truck.
I bought a couple books on how to live with a chronic illness just in case I am never better than this. It seems unlikely since so many people get better in time but who knows?
I want so badly to excercise, run and play again. I want my life back when I was happy and carefree. Try to stay in the moment if you can--just know that there are many people who are right here with you...
Blessings, Kim
-------------------- We are spiritual beings on a human journey...
posted
Hey Scottie - I also was a national class bicycal racer. 20 years of high performance racing and the last year have not been able touch my bike yet.
Most of my lyme has been nuro. Rocephine initally helped a lot of my nuero issues right away but then stalled. We started pulsing in flagly 4 days a week and then more herxing.
I do susspect that rocephine does drive some of the lyme into cyst form as many have thought. After 4 month of rocephine my doc switched to IV zith and kept pulsinge flagly on and off - I saw a lot of improvement.
I also have a chronic ehlichia infection, watch carfully your prostate. This bug really likes to hide out in that tissue. I am in my 21st month of treatment. Many things have improved but still work to be done
I currently do power walks when I can, mild easy weightlifting and get in the swimming pool as often as able. there is something about swimming and breathing that can help to open up the system.
Posts: 582 | From milwaukee wi | Registered: May 2005
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5dana8
Frequent Contributor (1K+ posts)
Member # 7935
posted
Hi Scottie
I did 3 years of treaments & glad I went so long in the end. It was very hard but did get me into patcial remmission. A place now I am very happy with. That included 6 months on IV - 2 & 1/2 years of orals.
So hang in there. For some it can take years but you never know when you will be turning the corner.
Are you treating for co-infections as well? This helped me alot, once I got the lyme count down.
And also helped was stepping up my detoxing and keeping my yeast under control with diet good pro-biotics nystatin & occational diflucan.
Hang in there. I know the road feels long & hard. But in the end you will have your life back. It just may take longer .
posted
Has anyone checked out doxy/CSM protocol. The theory being that long term chronic lyme is still a problem due to neurotoxins released by the lyme bacteria cannot be released by the human body without help. Even though doxy is an antibiotic it is not given for that reason being it has also been proven as an anti-inflammatory. The CSM is a old time cholesterol lowering med (not a statin), that is known not only to grab onto cholesterol but also neurotoxins. The doxy clears inflammatory pathways in order for the CSM to do it's work and clear out neurotoxins. There is also testing that can be done for this.
Maybe this has been discussed before. I don't know. Just a thought. I am on this protocol. Also the book "Mold Warriors" by Dr. Ritchie Shoemaker discusses this in regards to lyme disese. Mary V
Posts: 23 | From Ft Myers area, Florida | Registered: May 2006
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posted
I have been ill for ten years . You are fortunate to get a diagnosis before a decade has passed. May I add that there are others here , who were desperately ill FOR YEARS , who are MUCH Better ?
Jim Bob, lymetoo, efsd25 ( ernie) and Maria are sources of inspiration . Most ofthese people did NOT get TOTALLY well on ABX alone .
They incorporated herbs ( like andrographis) and some found rife machines indispensible when they could no longer keep up the ABX.
Jimbob found his improvement primarily through Stephen Buhner's protocol. Others have had success with it , sometimes using the herbs alone , OR WITH ABX.
The common thread I see is that most people who improve significantly , employ a variety of tolls from herbs to ABX to rife and they are vigilant in their efforts . There may be folks who get well solely on ABX, but I have not read ( personally) too many who get quick cures from ABX.
From what I gather here , the first year is HELL, the second year is usually a bit beasier, and then , depending on diligence and weathering ups and downs, progress slowly is made .
We are all beggars here , searching for bread. I am so encouraged to read posts that give me hope that I may possibly have a better life at some point . I thank God for this site and for people like Jimbob, Ernie, and all the folks who take time to answer my questions and share their victories OVER AND OVER .
Yes, I know how you feel. I have been on treatment for alittle over 3 years and have just in the past 6 months turned the corner to about 96% of normal. Lots of neuro issues also (all cleared up). They think I had this for 15 years before finding out.
My treatment has been oral, IV, IM and back to oral. Don't give up. This is really hard to get through. You have co-infections. That makes it a little harder.
You should see some small improvements, then you will back slide, then you will see more improvements until one day you say, gosh I feel really good. 2.5 years of treatment is when I got there.
Ok, on the neck pain. I was told that I had RA before I found out I had Lyme and Babesia. I use minocycline 50mg tab - 300mg per day and Lodine (both are anti-inflamitory) and all of my neck creeks, pops and pain stay away. But, if I go off these two meds, it is back in days.
Have you been tested to see if you have a HLA-DR4 gene? I do and have been told that it makes me more prone to RA. Now, I won't agree that I have RA, because I do not have pain in both sides of the body and do not always have pain, but I do think that the Lyme turned on this gene and I now have a small amount of Lyme Arthritis.
Dont't forget to take mag supplements and probiotics to help your gut. There are also other things that I did for the Neuro like Methyl B-12 injections, folic acid supplements and mild HBOT. It has all helped.
The last thing I have done is take L-Arginine supplements. I take 2,000 mg per day along with 2,000 mg of Mag. The L-Arginine is suppost to help increase the amount of NO which will in turn reduce the inflamation in my blood vessels and stop the myclonic sleep jerking that I had.
It has worked and I have not had any of the sleep issues in about a month.
Keep reading everying on this site, read old posts, look at what Marine posts (she is really smart). The abx alone will not do it, but you must have them.
Good luck and don't give up. You will get there.
AGuess
Posts: 45 | From NC,USA | Registered: Jan 2004
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posted
Hi there, I am a newbie here but not new to Lyme. I ad been symptom free for 18 years, but here I go again. Evey symptom is up and running full speed again. I don't want to believe it but yup its here. Just looking at all the sites all I remember is 3-4 years of b.s. trying to get better and I was so sick of taking pills. Just the thought of it makes me want to throw up. BUT I had 18 years and I am grateful for them. I will do what I can again this time. There is hope if I went that long.
-------------------- God so loved the world he didn't send a committee Posts: 12 | From Green Bay | Registered: Jan 2007
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MariaA
Frequent Contributor (1K+ posts)
Member # 9128
posted
quote:Originally posted by Mary V: Has anyone checked out doxy/CSM protocol. The theory being that long term chronic lyme is still a problem due to neurotoxins released by the lyme bacteria cannot be released by the human body without help. Even though doxy is an antibiotic it is not given for that reason being it has also been proven as an anti-inflammatory. The CSM is a old time cholesterol lowering med (not a statin), that is known not only to grab onto cholesterol but also neurotoxins. The doxy clears inflammatory pathways in order for the CSM to do it's work and clear out neurotoxins. There is also testing that can be done for this.
Maybe this has been discussed before. I don't know. Just a thought. I am on this protocol. Also the book "Mold Warriors" by Dr. Ritchie Shoemaker discusses this in regards to lyme disese. Mary V
I tried Welchol with my doxy- Welchol works like CSM but is easier to take (6 pills a day instead of a sugar-containing powder you mix up). I also took a lot of bentonite clay and chlorella, all for the toxins.
I had a very quick recovery (I was probably not as sick as some of you), which I attribute partly to the Welchol/chlorella/bentonite.
I'm reading Mold Warriors right now and someone should give that doctor an editor! He just rambles on and on and on which makes it really hard to get the information. It's a self-published book which sometimes causes people to ramble more than professional writers can.
-------------------- Symptom Free!!! Thank you all!!!!
posted
The last few days I've felt rather depressed. I was symptomatic with Lyme for 2.5 years before
getting diagnosed in Nov 2005 with Lyme/Bart/Enlichria. But those 2 or 3 years
untreated gave the Lyme much time to get entrenched in my immune system. I've done a few
different protocols (Biaxin/Plaquenil, Tertracycline, Ceftin/Ketek, and minocycline).
All of these supressed some of my sytpmtoms so I am functional but none actually really made me
any better. I'm now on my 6th week of IV Rocephin and just yesterday added Rifampin but
even with 6 weeks of IV I see little improvement. I will add that I'm a marathon
runner (serious runner for 20 years and done 10+ marathons) but now I can only walk because I
become most symptomatic after exercise. I have only CNS Lyme. My most frustrating symtoms are
this pressure/buzzing in the back of my neck/head (this sounds mild but it is the
worst!), a loud neck creak everytime I turn my head to the right, fatigue and headaches. I also
have mood issues when I exert myself too much. I'm scared I'm never going to make any progress.
I had such hope with IV due to it's ability to cross the bbb which is really required in CNS
Lyme. Will I ever run again...will I ever feel myself again...will I enjoy my life the way I used to??? Sorry for the long post.
Posts: 90 | From massachusetts | Registered: Aug 2006
| IP: Logged |
I was pro am archer and at the top of my game when I contracted lyme. I power lifted 3 times a week and practiced daily alone with working and raising a family. I really know what you are talking about. I had to give it all up because it was to painful to do. The day I gave it up I was shooting a state tournament and had to have someone pull my arrows as it was to hard to walk down to the target to pull. I placed 2nd and at the top of my game. The next week I had a call to turn pro and a huge sponsorship. I could not do it. I was devastated.
What I did because I could not stand this, I found another sport that I could be competitive in that was a bit easier to do. I statrd to show dogs. I loved it. It kept my mind working but under a differnt stress than the terrible loss I had endured. My motive was to never stop. I never did. Dogs got to political to be abl to win with but I still am working with compitition thru politics. I am now serving as mayor to a community and determined to never stop just different. You may have to do the same. Anything is possible. You know that being a marithon runner. Lyme is your new marithon but don't live your life for lyme, live your life for you and always make the pain and agony 2nd. Be happy, it makes this crap eisier to live with.
Cara
-------------------- God so loved the world he didn't send a committee Posts: 12 | From Green Bay | Registered: Jan 2007
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Hang in there. I was on IV for 7 months (you name it and I rotated through it). It takes massive doses of different types of abx to treat Lyme and the Co-infections you have. It also takes a lot of time. I have now been on oral, IV, IM & back to oral for 3 years of treatment.
I understand that you want your life back, because I also wondered many days if I would ever feel normal again. I could not walk due to the pain, my hands would swell like claws, memory problems, anger issues (mad man every night), CNS issues (lots of them), etc. Have you tested for Babesia?
This is all gone, everything is better, I can now run with my kids, sleep great, have energy, no pain most days, and then very mild and only in one joint at a time. However, it took 2.5 years before I reached this point. It took about 1.75 years before I really started to notice a lot of change.
You will get better. If your LLMD already has you on IV you are receiving good treatment. Don't give up, this is not easy or cheap but there is a light at the end of the tunnel.
AGuess
Posts: 45 | From NC,USA | Registered: Jan 2004
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I had mostly neuro symtpoms too. I won't get into all of them but they were miserable and very scary.
I was intensly sick for six months but suspect lyme had been entrenched for a few years or possibly all my life....I will never know for sure.
I was on aggressive treatment for a year and a half. While I am not 100% I am much better.
The latest thing I have been addressing is parasites in general. I have been taking a couple of products for instestinal parasite cleansing and I cannot tell you what a difference I feel.
I am no longer on abx while I am doing the cleanse. I would be afraid to take both at the same time. I do urge you to plan ahead and maybe try a cleanse when you are finished with treatment.
Black Walnut Hull tincture has been very successful for a friend of mine who has been sick with tick borne illness...as well this is in the products I am taking for intestinal cleansing.
I am a rower. I was in the best shape of my life when this stuff hit me super hard and left me unable to function. Now I am attempting to start exercising again and it is a physical and mental mountain for me to climb but I am going to do it despite how hard it is to accept my body is where it is now physically.
Keep on keeping on Scottie - believe in miracles and visualize yourself everyday for a few minutes running like you once did.
Take care...
-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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Because I have been in a similar situation as you and others who responded (sick for 2 years before diagnosis, much treatment since then and little or no progress), I'll share where I am right now.
My LLMD is now working on the theory that for treatment resistant patients like me, looking to see whether parasites are present is critical.
I just got my results, and have several really disgusting parasites. So that's what we're treating for right now.
Once I'm cleared of parasites, we'll try again to address the onging strep problem that both my LLMD and my naturopath have felt are problems for me, and then I'll resume lyme treatment again.
So, you may want to ask your LLMD to do a parasite test (not fun, you have to collect stool and saliva over several days). The lab I used is called Diagnos-Techs.
I don't know if it's the answer yet, but if you search, you'll find a fair amount of discussion here on parasites and the necessity of eradicating them.
Good luck,
monkeyshines
Posts: 343 | From Northern VA | Registered: Oct 2004
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You might try Bicillin LA in combo w/ketek and tinidazole.
I've been getting Bicillin injections for over a year now, and many of my neuro sx such as those you mentioned are now gone. I'm not 100%, but am definitely improved.
Good luck.
Posts: 449 | From Pasadena, CA, usa | Registered: Aug 2005
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Scott,
It takes time. I wish it was quicker!!!
I got sick and then went a year w/o treatment. I then was treated for a whole year with rotating orals. NOTHING happened EXCEPT I got worse and worse and WORSE to where I was bedridden. If I hadn't gotten sick with tickbite I would *never* ever have believed it could be Lyme disease and Ehrlichisosi and Babesiosis. I ONLY got WORSE for a whole year on orals. Finally I could no longer remember my toddlers name and was bedridden so my doctor put me on IV Rocephin. 6 months did virtually NOTHING! NOTHING!!! (except by day 3 a bodywide rash was gone and my malar rash was gone but other than that NOTHING from day 3-6 months)!!! I was suicidal. In so much pain. Then one day in month 7 of IV Rocephin, there was no pain in my right hand for about a minute!!! NO pain in this partial part actually of my right hand!! But it was amazing i n my condition!!! And every day after that there was less pain, better movement, and eventually I stopped weakening. Getting stronger took a long time but IV got me to 95% and adding Mepron to 99%!!!!!!! At the end of 9 months of IV Rocephin and then on to Mepron I have been at 99% for 6 YEARS now. I NEVER EVER believed I would get better after the first few months of treatment, but I kept taking the pills and IV because it was my only hope and I had a little girl to live for.
SO you never know!!!
What I *do* know is that EVERY SINGLE person who has come to our local support group over the years- EVERY SINGLE PERSON_ who has stuck with longterm antibiotics has gotten better if not 100%. No one has worsened. No one. The only people who don't get better are those who jump around therapy to therapy or go off abx. I used to be really anti-herbal because of this (which is ironic because I actually used to be known among my friends as an herbalist and would make people concoctions for illnesses which worked!) BUT I do believe that the new Healing Lyme book comes from a place of respect for the power of herbs and is written by someone who knows them. So I do have some hope there and don't just blackout herbal therapies like I used to!!! What I believe is- WHAT works!! ANd so FAR, I have **seen** antibiotics work- and Artemisia works great, too!!!!!!!!!!!
I am glad you have a doctor!!! That is half the struggle right there. It DOES take time. Hardly ANYONE who is chronic is better in a year. But two years!!! SO many!
ALSO what struck me about your post is the absence of Babesiosis treatment and yet your symptoms SOUND like Babs!!!!!!!!!!!!! I would borrow 5 days worth of Artemisia from a Lymey friend and do a challenge!! I know that I reacted to any Babesial medication within *minutes* and that many people do within a day- but no matter what you would within 5 days!!!
Take care. It sucks being sick. I hope you get better. Best wishes, Sarah in CA
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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Your story is inspiring. So glad you didn't give up on the abx and antimalarials!
It looks like Scottie is taking planquenil/biaxin which I think is an antimalarial combo.
I had Babesia too...I think that is why they antiparastic cleanse I am doing is working...it has wormwood in it which is an antimalarial and what they make the compound 'arteminisin' out of.
Glad you are better CA.
-------------------- �Pride is concerned with who is right. Humility is concerned with what is right.� - Ezre Taft Benson Posts: 655 | From NC, Exit 88 on the Deer SuperHighway | Registered: Dec 2004
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posted
Interesting, California, that you think I could have Babs. It is quite possible. I've always thought, however, that my neck pressure (never pain just intense pressure)and headaches were sort of classic Bart which I did test positive for. What in my case makes you think of Babs?
In any case, thanks so much for your positive thoughts (thanks to anyone who replied) because it gets tough and hard to keep a positive attitude. Best - Scottie
Posts: 90 | From massachusetts | Registered: Aug 2006
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CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
Scottie- Because head pain and pressure were some of my Babs symptoms!!! As well as fatigue, mood issues and depression!!!! ALl can be from Babs!!! Doc Bransfield whose name I write because he is very Out as a LLMD and has a website, has written on mood issues and Babesiosis at his site mmi which stands for Microbes & Mental Illness. As well as- locally- I have somewhat facilitated a support group for 7 years now and those are all very common Babs symptoms for others as well as myself!!! I would really wonder!!! Hope it is- because then you can get rid of it*)!! Other Babs symptoms that are common are night chest palpitations, nightmares, shoulder/neck stiffness (feeling that you can't turn neck or shoulder past certain angle)... but those may be common with local strain... Hope regardless you find answers for yourself*)!!! Sincerely, Sarah
-------------------- There is no wealth but life. -John Ruskin
All truth goes through 3 stages: first it is ridiculed: then it is violently opposed: finally it is accepted as self evident. - Schopenhauer Posts: 5639 | From Aptos CA USA | Registered: Apr 2005
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