djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
hey guys-
hope you all are well (or as well as we can be)
i was wondering if anyone who had or has been treated for a serious case of lyme can tell me their experience and how long they were on abx (iv, etc) before they felt pretty good.
i am on week 4 of 4g iv rocephin 4 days a week, just added tindimax too.
i am doing better, yes, but the progress is SLOW.
i was barely able to walk or talk and now i can get around a little, and am anxious to start dong normal things again. i realize this could be a ways off....
i know this is to be expected, but i just wanted to get some other peoples stories.
there is a good chance i will need to be on iv abx for months, isnt there? my doc said i am so bad that he cant even re-evaluate until 2 months of rocephin are completed. and please, no horror stories. thanks
also- anyone out there had prominent symptoms of very bad pains in head and neck, stiff neck, etc that cleared over time?
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
CaliforniaLyme
Frequent Contributor (5K+ posts)
Member # 7136
posted
I became responsive in the 7th month of rocpehin and by the 9th month was almost 100%!!!
Was wonderful- was a horror story before*)!
About month 5-6 I became very down because of no real progress- became convinced I would never ever really get better- would always be in pain- unable to walk normally- brain gone-
but I DID get better anyway- and have stayd better after transitioning to orals- ever since- 6+ years went back to work full time married agian dated up a storm before that (okay not a storm dated A LOT and had fun, innocent type fun not racy fun pinball and movies and coffee on the beach..) had another baby two more rescued cats! and life is good.
Be as patient as you can be- soemtimes people recover faster- sometimes slower-
ILADS says 1-4 years for chronic- but we had one woman diagnosed MS who wenton IV Rocephin and was better in a month but relapsed twice and total went on IV Rocephin 3 times months apart (should have just stayed on and transitioned to orals but her doc just took her off cold turkey did not know what he was doinG!) but she is in full remission today. Happy EndinG!*)!*)!
Another guy with ALS/Lyme had his electrical muscle measurements return to normal in 4 days of IV Rocephin!*)!
Those are the quickies- everyone else I have known has taken more time- some more than I- some less!!!
MOST importantly, it sounds like you have a good LLMD*)!*)(!! Bestest wishes, Sarah from 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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posted
You should heal fast, if you are able to handle those high doses of antibiotics in such a short amount of time you should do good!
Me on the other had I have been treating for 3.5 months with abx and still cant handle more than 500 mg of any type of abx before it puts me down for a week! When you stop IV make sure you dont relapse!!! I would try adding in other treatments while on the IV "down the road from now" becuase relapse with IV rocephin is very common!
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
Your question is
average late stage treatment length
Iam starting my seventh year on orals .
Real High doses in the beginning.
Now on a aveage dose of mino 200mg 3 x a day.
If I would give any advice it would be initial attack would be high doses then lower dose's Not To Low!Blood levels kept up of good abx for lyme and get after coinfections next.Babs bart,mycoplasma,etc.
If you cant do orals at first then do Iv less stomach problems then back at them with orals GET THE Coinfections!
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
posted
I have been on oral abx for 2 years, and am seeing progress but have been slowed down a lot by babesia. I had pretty bad CNS symptoms like the ones you describe, but they are all getting better!
My biggest piece of advice for you would be not to expect too much too soon. When I started treatment 2 years ago, I thought that I have been sick for a long time, so I can't expect to get better right away. I gave myself one year to go through treatment without expectations of being "better." When things got bad with herx, I would just think to myself that I am 6 months into it, so I am half way there! Or I am 2/3 of the way there! Believe it or not, that helped me deal with the shorter-term discomforts. Unfortunately one year didn't turn out to be long enough, but I am ALMOST there.
Hang in there!
Posts: 393 | From Washington, DC | Registered: Jun 2005
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
byron-
when you say try "other" treatments, what do you suggest specifically? when you say puts you down for a week, what does that mean?
docjen, thanks for the advice. according to my tests from igenex, i dont have any co-infections, but i am not sure of that or not. i think i might get retested later.
have you guys been disabled this whole time too? i havent been able to work, but i am trying to be patient.
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
hopeful123
Frequent Contributor (1K+ posts)
Member # 3244
posted
several years for me. it's still worth the journey...it's still one day at a time.
-------------------- some days you're the bug, some days you're the windshield Posts: 1160 | From NY | Registered: Oct 2002
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SForsgren
Frequent Contributor (1K+ posts)
Member # 7686
posted
I am finding it takes about 3-4 years. I am nearing 2 years into treatment (July 2007) and am at about 80% of my pre-infection health. Infected 1996. Diagnosed July 2005.
-------------------- Be well, Scott Posts: 4617 | From San Jose, CA | Registered: Jul 2005
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ByronSBell 2007
Unregistered
posted
I got put down for 8 days on a 250 mg dose of oral zithromax! I have only been symptomstic since Nov. of 2005, so it seems like I should be seeing some improvement now but, NOPE!
As in other treatments, when you do IV high dose antibiotics for lyme it does a good job at helping symptoms and getting you better faster but everyone I have heard of that didn't do it long enough relapsed and were sicker than in the first place. I would suggest towards the end of your IV therapy (maybe a month before) to start orals, or start the salt/c therapy. I just read a book on it and it IS safe when worked up over time and done correctly. Lyme cant survive in salty/non-acidic conditions. Also make sure your body temp. stays at 98.6, I am struggling with that so I am on low dose thyroid to see if that helps (lyme hates heat) Basically what I am saying is do some research and try to make your body as poor of an enviroment for the bugs BEFORE you go off the ABX!
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
The optimal growth temperature for B. burgdorferi is between 30 and 37C. That said 98.6 degrees F is 37 degrees Celsius.
Thats just the growth They also have heat shock protiens that protect them.
30 Celsius = 86 Fahrenheit So right in between these two is where they do best. 37 Celsius = 98.6 Fahrenheit
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
Vermont_Lymie
Frequent Contributor (1K+ posts)
Member # 9780
posted
At eight and one-half months into treatment, I am much better in some ways, and no better in other ways.
It seems that everyone's lyme disease and individual response to treatment is somewhat different, although there are universal things that we can say (like try these types of antibiotics).
I have learned that lymenetters were right -- treat co-infections first! Or, during your treatment.
When I first was diagnosed last july after more than 8 years untreated lyme, I was overwhelmed with just learning about lyme and did not want to hear about babesia or anything else. just dealing with borrelia was enough.
But after 6 months of treatment, some bad symptoms had not been touched, and after switching llmd's, a got a positive test for babesia. Lymenetters were right - check out for co-infections, even if you do not want to deal with them!
So about 6+ weeks into treatment for babesia, my breathing is so much better it is an amazing, astonishing thing.
It is kind of weird to think I have had a protozoa living inside me and causing these breathing problems for years, but there you go -- I cannot otherwise explain why my lungs are so much better after 6-7 weeks of babesia tx.
But overall, I still need alot of improvement. I have only been treated with amoxy, and I believe I will need other abx to fully knock the lyme down. So I now accept that it will take a couple of years....
Posts: 2557 | From home | Registered: Aug 2006
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savebabe
Frequent Contributor (1K+ posts)
Member # 9847
posted
I was on oral abx for about a year until I switched to IM shots for six months. After not seeing much improvement I tried 10 months of IV, relapsed shortly and then another 10 months of IV therapy. Currently I am on oral and IM meds. I feel that my treatment was delayed due to chronic babs. It wasn't until I really focused on the co-infections that things started to turn around.
ALWAYS TREAT CO-INFECTIONS FIRST!! That is the key to recovery.
Posts: 1603 | From ny | Registered: Aug 2006
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djf2005
Frequent Contributor (1K+ posts)
Member # 11449
posted
i was tested thru igenex for co-infections and they came back negative. is it possible that the tests (even through igenex) could be wrong, and has anyone experienced this? where they were tested for co-infections (through igenex), found negative, and than retested positive?
-------------------- "Experience is not what happens to you; it is what you do with what happens to you."
posted
I tested negative for babs with Bowen but I display alot of babs symptoms! My LLMD said it is almost worthless to test for co infections and to just treat them anyways. he said that different parts of the country have different strains so test for co infections is worse than trying to test for the borrelia itself
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quote:Originally posted by djf2005: i was tested thru igenex for co-infections and they came back negative. is it possible that the tests (even through igenex) could be wrong, and has anyone experienced this? where they were tested for co-infections (through igenex), found negative, and than retested positive?
absolutely YES!!!! My babs test thru Igenex was "borderline"....When my very smart LLMD put me on a trial run of meds for babs, I herxed to China and back.
Definitely look to coinfections, especially babs, if you are still ill after one year. It would be smart to ask your LLMD to give you a trial run of meds maybe 2-3 months into Lyme treatment.
It's important to knock down SOME of the lyme first or you WILL herx around the world!!
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96239 | From Texas | Registered: Feb 2001
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WildCondor
Unregistered
posted
Everyone is different. It depends how long you have been untreated, and what co-infections you have. The more co-infections you have, the longer the treatment typically is.
It took me 3 years to be able to function alone again, and 5 years of treatment go get my life back!
Lyme treatment can be a marathon for some...it's not a quick treatment protocol unless you are really lucky and catch the tick the day you get bit.
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ByronSBell 2007
Unregistered
posted
how accurate is the Igenex test for co infections? I dont think my llmd ran the coinfection test on me???
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lymewreck36
Frequent Contributor (1K+ posts)
Member # 4395
posted
I have begun my fifth year of treatment. Was unable to get rid of babs with every treatment known to man. Just finished 4 malerone pills a day for 4 weeks. I started having a hypersensitivity to the treatment and had to stop the babs stuff. Let's see if it is gone.
Still can't quit the lyme treatment. Relapse immediately. I did 5 months of rocephin IV in the beginning. Then went to orals for 4 years. Still struggle.
Mary
Posts: 1034 | From North Carolina | Registered: Aug 2003
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caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
I was on 3 years of high dose doxycycline for chronic nuerological lyme. Didn't work.
BUT, 1 month of rocephin AND flagyl followed by 1 month of high dose ceftin (crosses the bbb) AND tinidazole WORKED. I really think it got rid of lyme itself. Then I needed tx for bartonella (which got rid of chronic meningitis, yay!!) and tx for babesia (or some other protozoa...) (still on that).
I really really really think you are on the right treatment for lyme itself!! Which might save you years of taking doxycycline etc... And it sounds like your doc will treat as long as needed. Minimum 2 months for nuerological lyme sounds very practical to me. & adding in tini after 4 weeks of rocephin sounds very safe.
2 things you might want to watch out for...
That combo is known for systemic yeast. I needed high doses of fluconazole during and after that treatment. The yeast was effecting my CNS etc.
If you have co-infections that are not susceptable to that combo then you want to take a good look at those afterwards. Sounds like you have a good doc- probley the first thing s/he will look for. Co-infections can make you feel like crap even if the lyme bacteria itself is subsiding.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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caat
Frequent Contributor (1K+ posts)
Member # 2321
posted
oh... btw... if this is your first treatment for lyme then you might be having a major herx right now. That would explain why you're not feeling better fast. When these bacteria die they release a toxin, so usually people feel worse before they feel better. Lyme herxes take longer than syphillis herxes.
Syphillis herxes usually start right away, lyme herxes usually start at 3 to 5 days. Supposedly syphillis herxes just happen at the begining. Lyme herxes generally are bad for a while, the worst being around day 4 and then again around week 4.
Posts: 1436 | From Humboldt county ca usa | Registered: Mar 2002
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posted
I'm in year 4.5 of treatment. Much better but not totally well. (Maybe 85% there)
did orals for 3 years and 8 months before I gave in and did the IV rocephin that had been recommended starting at year two. Now so sorry I didn't do that sooner. Definitely made a huge difference.
Beware of potential gallbladder issues with all that rocephin. Are you taking actigal or ursodial to try to protect the gallbladder? Do you get gall bladder ultrasounds?
Pomegranite
Posts: 309 | From CA | Registered: Nov 2002
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beachcomber
Frequent Contributor (1K+ posts)
Member # 5320
posted
4.5 years so far for me. I am at 50%. I was not functional after first few months of treatment. Am sloooowly come out of my Lyme coma.
Posts: 1452 | Registered: Feb 2004
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treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
You could have anyone of these this is why tests are not acurate.
Thats just the ones they know of this may even be just a partial listing here?
If I would go for the test which I had ran at local hospital it was a waste of my money negative. The test I would do the next time unless they come up with a better one would be having a good lab who look for babs do it with microscope several different times say in a period of 6 months? Looking directly for the infected blood.
But it would have to be one that does it that way all the time.
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
treepatrol
Honored Contributor (10K+ posts)
Member # 4117
posted
List of tests Igenex
CPT Codes Updated September 2006
Test # Description (Name) CPT Code MISCELLANEOUS 220 C-Reactive Protein 86140
LYME TESTS (B. burgdorferi) 800 Lyme DOT BLOT Assay (LDA) for antigen* 87449 802 Lyme DOT BLOT Assay (LDA) -- 2 Samples* 87449 X 2 805 Lyme DOT BLOT Assay (LDA) -- 3 Samples* 87449 X 3
875 Lyme DOT BLOT and PCR Panel for B. burgdorferi Includes: 805 Lyme DOT BLOT Assay (LDA) -- 3 Samples* 87449 X 3 465 Multiplex PCR on the 3 pooled samples 87801 X 2
850 Reverse Western Blot for B. burgdorferi (Performed only on positive LDA samples. Strongly recommended as a confirmation test.) 86617
170 C6 Peptide-B. burdorferi 86618 183 Lyme Serology IgG/IgM Serology is performed only in conjunction with Western Blots. 86618 195 Lyme Serology IgM Serology is performed only in conjunction with Western Blots. 230 Lyme IgG/IgM/IgA Screen (IFA)* 86618 189 Lyme Western Blot IgG 86617 188 Lyme Western Blot IgM 86617
MULTIPLEX PCR (B. burgdorferi) 456 Whole Blood 87801 X 2 453 Serum 87801 X 2 450 Urine 87801 X 2 465 Urine (Pooled from 3 samples) 87801 X 2 459 Cerebral Spinal Fluid 87801 X 2 462 Miscellaneous (Tissue, Breast Milk, etc) 87801 X 2
140 TICK TEST by PCR for B. burgdorferi 87476
CENTRAL NERVOUS SYSTEM -- (Cerebral Spinal Fluid) 810 Lyme DOT BLOT Assay for CSF* 87449 281 Bartonella henselae for CSF* 87471
BARTONELLA henselae TESTS 285 Bartonella henselae IgG/IgM Antibody 86611 x 2 280 Bartonella henselae PCR* - whole blood 87471 283 Bartonella henselae PCR* - serum 87471 290 TICK TEST by PCR for Bartonella henselae 87471
BABESIOSIS TESTS 200 Antibody for B. microti (IgG & IgM) 86317 X 2 660 Babesia PCR Screen (B microti and/or WA-1) 87798 640 Babesia FISH (RNA) 88365 710 Antibody for WA-1 (Referral Test)* 86256 660 Babesia PCR Screen (B microti and/or WA-1) 87800, 87801 689 TICK TEST by PCR-Babesia (B microti and/or WA-1) 87798
EHRLICHIOSIS TESTS 203 HME (Monocytic) IgG & IgM Antibody 86317 X 2 750 HME PCR 87800, 87801 206 HGE (Granulocytic) IgG & IgM Antibody 86317 X 2 755 HGE PCR 87800, 87801 148 TICK TEST by PCR for Ehrlichia 87798
RICKETTSIA 975 TICK TEST by PCR for Rickettsia 87798
* Not available in New York State
-------------------- Do unto others as you would have them do unto you. Remember Iam not a Doctor Just someone struggling like you with Tick Borne Diseases.
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When you stop IV make sure you dont relapse!!! I would try adding in other treatments while on the IV "down the road from now" becuase relapse with IV rocephin is very common! ![[bonk]](graemlins/bonk.gif)
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