Topic: Post Lyme Symptoms after treatment..they're real.
Tricky Tickey
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Member # 26546
posted
I thought I'd share a tidbit of info. I was one of the lucky one's who discovered I had Lyme early; and started treatment 8 weeks after being bitten by the bug. I came here to Lymenet. This site saved my life.
I treated for 4 and a half months with an LLMD. I want to say that now, 2 months after my last antibiotic, I am in good shape. But I'm very aware that the bug could attack again. We hear that one should continue antibiotics until all symptoms are gone. Which is true....but should we wait until there is absolutely NOTHING that we can label as a 'symptom'? I didn't.
Lingering symptoms hung around for me. The elbow/arm pain is still there, but after antibiotics, it slowly alleviated until it's almost gone, with a flare-up or two if I use my arms too much or the weather changes drastically. Interesting observation, though, that the pain decreased AFTER the antibiotic.
Another strange occurance. Lip twitches. I was experiencing these pretty regularly during RX treatment. After ceasing the antibiotics, the lip twitches increased by 70%. The longer I was off antibiotics, the less twitching. Another interesting observation: lip twitch increase PEAKING 2 weeks after ending antibiotics, then slowly decreasing to none over 2 months.
Last, neuro issues. Again, after the antibiotics, the 'letter reversal' issue seemed to peak a bit, then alleviate. It now occurs occasionally. Another odd sensation is the feeling of being off balance sometimes. It happens weekly, maybe once or twice, but still happens none the less. Finally, there's memory issues; not long term, but short term. Remembering names, nouns of persons or pronouns of things; it's occuring.
I've noticed that I experience confusion at times while driving. I'll forget where I am or become disoriented in a familiar area for an instant. Just another observation to chalk up to the puzzle. In summary, I guess I'm trying to hit on the fact that my last symptoms PEEKED after stopping antibiotics.
I feel that documenting these things is important and can be a vital tool in learning more about the illness. Regardless, overcoming such a difficult and mysterious disease like Borrelia is an accomplishment in itself. I wish everyone the best and will continue to stay on Lymenet.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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Rumigirl
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Uh, I don't want to rain on your parade, but it sounds to me like your dr stopped your tx too soon. The rule of thumb, per Dr. B and most LLMD's, is to treat until two months AFTER ALL SYMPTOMS have stopped. ANd then to watch out for any relapse, and treat the relapse, if it happens.
"Post-Lyme Syndrome" is an IDSA term to dismiss our symptoms!
I'm not saying that sometimes there aren't symptoms that never go away. But only a few months of treatment, even though you caught it somewhat early, is not nearly enough. NOt with the symptoms you are/were having.
Posts: 3778 | From around | Registered: Mar 2008
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seekhelp
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posted
I tend to agree with Rumigirl. This beast doesn't seem to go down easy. Look at WildCondor's story - pounds of pills and IV Abx for years to get her life back. I realize you caught it early, but..... It's a tough decision either way. I guess you know what you can and can't live with. I struggle with the same problems, but unfortunately I have not felt well enough to do a Lyme dance. Hopefully someday.
I don't know how possible it is to get back to pre-Lyme state regardless. Our bodies were devastated.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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BoxerMom
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lululymemom
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posted
Many of the people that I have heard from who have "recovered" still have the odd symptoms.
I think there are very few that have zero symptoms after treatment. I personally believe this is either due to permanent damage that has been done, and/or because it is impossible to ever completely eradicate the bacteria and parasites from our systems, due to the very real possibility of relapses occuring.
quote:Originally posted by BoxerMom: [QB] Arkiehinny - Did you treat for Babesia?
Yeah, the "off balance" made me wonder too.
I think you'll know in another month or two if you are home safe.
-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96227 | From Texas | Registered: Feb 2001
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momlyme
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Member # 27775
posted
I hope it stays away!
Lyme, lyme go away... don't come back another day!
Are you taking something herbal???
-------------------- May health be with you!
Toxic mold was suppressing our immune systems, causing extreme pain, brain fog and magnifying symptoms. Four days after moving out, the healing began. Posts: 2007 | From NY/VT Border | Registered: Aug 2010
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nefferdun
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posted
I agree that you might be experiencing babesia symptoms - the off balance and mental problems are a tip off.
It is actually rare to only be infected with Bb. Best see another doctor so you can get after any remaining co-infections that you missed.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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Tricky Tickey
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Member # 26546
posted
Thanks for the input, guys. For sure, though, I definitely don't go with the IDSA suggestion on Post Lyme Syndrome, but I really believe there are some symptoms or residual effects after Lyme.
Lululymemom: Hey, I totally agree with you there. Who knows if it's permanent damage or what. The fact is, nobody knows. I know a couple of others here in my area that have some lingering issues, but like me, they aren't sick now. And still fighing, like me!
Boxermom and nefferdun: No, I didn't treat for Babesia. My LLMD did not believe, according to my symptoms, that I had it. I never had night sweats either. When checked the list off of symptoms under Babesia, it didn't seem likely. As a matter of fact, he ruled it out on the first visit, but of course, one never knows. I'm certainly aware and cautious of the possibility. I'm going to keep it under my hat and watch carefully for anything else.
Lymetoo: I agree that I'll probablly know in another month or 2 for sure if I'm really over it. I FEEL over it, totally! Back to my ole fighting self. Bounding around like a young gazelle.
The symptoms (or whatever they are) now are minor, like I said above, only happening occasionally. And I can live with it, as long as it doesn't inhibit me. The main thing is to keep my immune system up. I'm working on killing parasites now. I'm thrilled (NOT).
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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Tricky Tickey
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Member # 26546
posted
momlyme: Thank you! I'm on lots of supplements just to boost my system. I've taken Echinacea within the last 2 months when it felt like I was getting sick with a bad sore throat, (I always had allergies and would get sinitis twice a year before) like it was hurting in my right gland the first time and left gland another time, like right by the tonsil.
Actually hurt nearly to my ear, but after I kept up with Echinacea, apple cider vinegar and gargling with cayenne pepper juice for 3 days, it stopped. Amazing. I hope I never take antibiotics again. Keeping an attitude of gratitude is important right now.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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canefan17
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Member # 22149
posted
Lyme slowly reproduces in the body and can appear months to years later.
The co-infections will usually show symptoms quickly after stopping abx's.
Hate to rain on parade as well - but you haven't been fully treated in my opinion.
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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seekhelp
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Member # 15067
posted
That off-balance feeling has been one symptom I couldn't shake for a long, long time. I fell ill in 1997 mysteriously and used to work out a lot. Recovered some over the years, but never lost that sensation. Then in 2007, my life shattered. Don't ignore it. It can haunt you if it's Babesia. I hope it's not! Best of luck.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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Tricky Tickey
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Thanks for the input. I will certainly always consider another opinion with a different LLMD. Like was said previously, in 2 months or so I should know. Good observations here that are appreciated.
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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17hens
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Member # 23747
posted
Maybe consider salt/c? It would work on parasites, like you're doing presently, and maybe get rid of babesia like others think. Just and idea.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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Tricky Tickey
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Member # 26546
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17hens: Yes, ma'am, I was thinking the same thing!! I just started Salt-c yesterday, then found out I started at too high of a dose. I cut back and will increase gradually over a month. BTW, I like your positive idea!
onbam: You are right, no known cure for Lyme 7 company. But there's hope....and that's what keeps us going. Plus the activism!
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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Amanda
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Member # 14107
posted
there is no reason to continue to take abx if you feel like you can get by without them. I mean, even the LLMDs recommend abx breaks.
The one thing to watch for is what I call "acclimated misery". Symptoms return so slowly, that it isn't until you are feeling miserable before you re-start therapy, which can mean more damage and more complicated and longer abx therapy later.
Keeping a symptom journal can help. Maybe not every day, but maybe every Sunday just list the problems you've had during the week. Then once a month look to see how you felt the previous month.
I am so glad to hear about people who actually feel much better!
-------------------- "few things are harder to put up with than the annoyance of a good example" - Mark Twain Posts: 1008 | From US | Registered: Dec 2007
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Keebler
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posted
- Every patient has better times, and worse - and many times in the middle.
Four and a half months is usually not adequate treatment for neuroborreliosis.
The Case For Chronic Infection: Evidential persistence of Borrelia species post antibiotic exposure in vivo and in vitro.
- by Michael D. Parent (2010)
- 82 pages
* This article documents the available evidence supporting both the existence of Chronic Lyme Disease, as well as the persistence of the infection despite antibiotic therapy. The abstracts are available on U.S. Government's Public Medical Database [pubmed.gov] -
[in speaking of acute cases of just lyme, diagnosed and treated early] " . . .To treat Lyme disease for a comparable number of life cycles, treatment would need to last 30 weeks. . . ."
". . .If all cases were detected and treated in the early stages of Lyme disease, the debate over the diagnosis and treatment of late-stage disease would not be an issue, and devastating rheumatologic, neurologic, and cardiac complications could be avoided. . ."
===========================
The park ranger who is one of the patients featured in this documentary did not see consistent progress until 3 years - and then another year before a good solid remission:
This author's younger son was treated immediately after being bitten (and the appearance of a bulls eye rash). He still had a very long and complex road to remission. --------
In addition to the usual coinfections from ticks (such as babesia, bartonella, ehrlichia, RMSF, etc.), there are some other chronic stealth infections that an excellent LLMD should know about:
I would encourage EVERY person who has received a lyme diagnosis to get the following tests.
- at link. -
[ 01-23-2011, 10:25 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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glm1111
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Member # 16556
posted
arkiehinny,
If you are doing salt/c (which I have done for 4 yrs with great success)please RAMP UP SLOWLY)
I started with 1/4 tsp sea salt and 1/4 tsp Ester C in a large glass of water. I ramped up according to how I was herxing.
You also might want to consider doing some antiparasitic herbs like Parastroy or Humaworm. I would continue these until symptom free and then do a maintenance dose.
Good Luck,
I Love Your Spirit,
Gael
-------------------- PARASITES/WORMS ARE NOW RECOGNIZED AS THE NUMBER 1 CO-INFECTION IN LYME DISEASE BY ILADS* Posts: 6418 | From philadelphia pa | Registered: Jul 2008
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You say that you are noticing experiencing " confusion at times while driving. I'll forget where I am or become disoriented in a familiar area for an instant. . . ."
This is a very serious symptom. If your LLMD thought 4.5 months was sufficient treatment and sent you on your way, you might do well to consult with a different ILADS-educated LLMD.
There are many different ways to treat but, lyme does persist past 4.5 months in many cases so it's good to have a second opinion from a different LLMD.
I don't know if you received treatment for all forms of lyme, especially the cyst form (with flagyl) but, if not, that is very important. And, even if you did, it might not have been enough for long enough. Lyme really takes consistent attention.
. . . impairment of concentration, inattention, easy confusion or disorientation when attempting intellectual tasks. . . .
. . . Lyme patients can be easily irritated by anyone just walking into the same room even though eye contact is never made or words exchanged. . . .
. . . Incidentally, hyperaccusis (sound sensitivity) can be a feature of VII neuritis. . . .
. . . Eye related problems in LD are commonplace . . . .
. . . disorganization, an inability to follow a train of thought . . . .
. . . Others forgot how to spell even simple words, how to read or must re-read with varying degrees of comprehension. One patient drove to Philadelphia instead of the desired Princeton destination because the initial letters were identical and confused him.
After shopping for groceries, another patient placed her shoes in the refrigerator and stored the food in the clothes closet.
Lyme patients can lose their way home or on the way to work, bypassing otherwise familiar exits or plain forgetting where they are in time and space or how they got there. This is known as topographical disorientation or environmental agnosia. . . . -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- You also write: "being off balance sometimes."
That is also a very common symptom of lyme encephalopathy as well as lyme affecting the vestibular system (inner/middle ear). In addition, hypoperfusion is to be considered or NMH / POTS, all very common with all Tick-Borne disease.
Babesia and bartonella also cause balance problems for a variety of reasons.
Hypoperfusion, NMH, POTS, are discussed here: -----------------
Topic: To everyone with CARDIAC symptoms please read !
===============================
From the same Bleiweiss article as in the previous post:
" . . . Dizziness, imbalance and clumsiness can become very frustrating as patients drop objects or knock them over, trip a lot, turn into the wall when rounding corners, and develop sloppy and slower handwriting. . . ."
" . . . at least two cases of Meniere's Disease respond to treatment for LD. . . ."
" . . . Another concomitant reported by an incidental patient is the occurrence of motion sickness which can be reversed with LD treatment. . . ."
" . . . The more commonly noticed neurologic deficits involve one or more cranial nerves (I thru XII), most often the sensory divisions of the trigeminal (V) and the motor components of the facial (VII) nerves in my patients. In declining order, deficits to pain sense are detected in V2, V3, and V1. V2 neuritis appears as paraesthesias or dullness in the central face and cheeks. . . . " -
Posts: 48021 | From Tree House | Registered: Jul 2007
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Keebler
Honored Contributor (25K+ posts)
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posted
- In addition to a second opinion ASAP with a different ILADS-educated LLMD with many years' experience, you might also consider taking a look at the articles and books here and consult with an ILADS-educated LL ND or a LLMD who also has a wide range of support methods to go along with solid methods of treating infection:
Topic: How to find an ILADS-educated lyme literate (LL) professionals in these areas:
Naturopathic doctor (ND); Acupuncturist (L. Ac.), a doctor of Oriental Medicine (O.M.D.), or a doctor of Ayurvedic Medicine (D.Ay.), certified herbalists or nutritionists, . . .
. . . Holistic MDs, and also Doctors of Osteopath (DO) and Doctors of Chiropractic (DC), etc.
�� Includes many professional links, articles and books on complementary / integrative methods - & RIFE links -- all by LL authors.
Also included are basic links explaining the principles of herbal medicine. -
Posts: 48021 | From Tree House | Registered: Jul 2007
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canefan17
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posted
17hens,
Some think that salt/c hits babs?
Posts: 5394 | From Houston, Tx | Registered: Aug 2009
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jackie51
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posted
I tend to agree with the others. you need a second opinion and possibly more treatment. From what you describe, these are current lyme symptoms, not after effects. Not good.
You did not mention any fatigue. Are you good to go all day and sleep just 7-8 hours? No irritability?
Anyways, wish you the best of luck. This is such an awful pain in the a** disease. Takes daily vigilance to conquer and then one must also try to live a "normal" life.
Posts: 1374 | From Crazy Town | Registered: Dec 2007
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17hens
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posted
canefan, it's on www.lymephotos.com. It says Borrelia burgdorferi, borrelia garinii, babesia, ehrlichia, and then a bunch of worm types.
-------------------- "My flesh and my heart may fail, but God is the strength of my heart and my portion forever." Psalms 73:26
bit 4/09, diagnosed 1/10 Posts: 3043 | From PA | Registered: Dec 2009
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Tricky Tickey
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Member # 26546
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Amanda: Thank you so much for you input! Yes, my LLMD/PA didn't see any reason to continue ABX. And a wonderful suggestion to keep a log. Thankfully, the issues I experience are minor & I'll certainly be watching for any increase.
Keebler: I'm glad you posted all those links for me. It'll give me immediate access to the info. About the confusion...it occurred after a 12 hour day of crisis work, non-stop. I've been working full speed since September. I have plenty of energy, except on the grueling days when I have multiple crisis back to back. (I'm a crisis worker for the mental health center) It can be draining, mentally.
There's a connection there, to the stresful days, but when I leave and go home, it's calmness and sleep! Yep, I can sleep. If problem, I take Melatonin. I strongly admire your knowledge of this illness and appreciate each and every bit of info you throw my way. Thank you!!!
glm1111: Gael, thank you so much for your encouragement. I really feel that if the bug strikes again, I'll go the natural route for treating. I'll still seek the advise of an LLMD like before, too, and if he/she feels I should start back on ABX, I'll do so. About the Salt-C: I'm starting my dosing just like you did. 1/4 to 1/4 each dose. Right now only dosing 2 times a day. Next week I'll go up if no bad reaction. ONly think I notice is my fingers itching! Maybe the worms are trying to come out there...Whoa!
apljack: You asked if I was good to go all day and sleeping 7-8 hours. I go all day just like I did before Lyme...I get tired on the more stressful days, like anyone else, that's usually when the confusion happens. But on a normal day it's just like any other. the only irritibility I have is from outside stressors and too much negative crap from co-workers. It's rubbed off onto the whole crisis team.
As far as sleeping 7-8 hours, on days working 12 hour shifts for 2 days in a row, I don't get enough sleep cause I'm so keyed up after handling so many crisis', but I DO actually sleep. But on the in-between times I get about 8-9 hours!
Before Lyme I always had problems slowing down my mind at night, due to OCD and racing thoughts. I'm just high strung.
You guys are great to encourage and help me so I don't relapse. Thanks!
-------------------- Early Disseminated LD- 2010. Currently doing acupuncture and yoga. Negative Igenex (IND & Pos Bands) ISSUES AFTER: Tendonitis, letter reversal, Low immune system. PREVENTION:SaltC,Iodine,Humaworm, Chiropractic. Posts: 1013 | From In a van down by the river. | Registered: Jun 2010
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