Lyme yes or no? New thread

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Traveler
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Date Joined May 2007
Total Posts : 36310
   Posted 4/19/2017 8:15 AM (GMT -6)   
Started for Lyme yes or no?

Here is their last post - posted on 4/19/2017:
"Things are going good..... added Clarithromycin (Biaxin) a couple weeks ago to replace the Generic Azithromycin that I had a very bad skin reaction to........ had a Herx for weekend and a half....after adding the Clarithromycin, but the Herx faded away good......

Final drug in my ramp-up added yesterday (Bactrim) - this was drug two to replace the Clarithromycin.

So still on a steady upward trend - since I started treatment Jan 1st..... some definite ups and downs, but trend is very clearly upwards.. about 80% better already.

Going to the Lyme Conference in Wiscasset, Maine on April 29th, then going to my Lyme Doctor after that. I am in Canada - so nice to be able to combine two things into one cross border trip.

http://www.mldse.org/p/conference-2017.html"
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 36310
   Posted 4/19/2017 8:17 AM (GMT -6)   
Link to page 1 of the original thread: www.healingwell.com/community/default.aspx?f=30&m=3743248
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)

ChickenArise
Veteran Member


Date Joined Nov 2015
Total Posts : 1500
   Posted 4/19/2017 8:37 AM (GMT -6)   
Im Glad I read the back thread or would have mistaken the opening statement for a question directed at the populous here, LOL

"Lyme Yes or No" is a forum member that I am not acquainted with! LOL
AUG14:Mold Sick.FALL16:Clinical Bart/Borellia.
NOV16:Lung Pain. JAN17:Morg Scalp (resolved)
FEB17: Pupils, throat glow UV light.
Xanax,Kratom,Ambien,+Biaxin,+Fluconazole,+Augmentin,-Tini(P),+Doxy(P),Order Rif
Now Cycling: Albendazole
MAR17:+DEC,+Stabilized Oxygen O7
Focus:Morgellons pre fibrous
Proto:Mod Klinghardt
Tx: self

Lyme Yes or No ?
Regular Member


Date Joined Nov 2016
Total Posts : 29
   Posted 5/9/2017 1:47 PM (GMT -6)   
My worst knee just flared up BAD sad

Last doctors Appointment was May 1st…

Then took the last step on the drug program the next day on May 2nd.

This was to double the Clarithomycin. The next day the left knee started to cause trouble.. then worse on Thursday, Friday…knee was immobile all weekend hoping this would help the left knee get better for work Monday. Could not move much even if she wanted to. Today the symptoms are much worse…. I will put the symptoms at the bottom. Before the last drug was added I was moving a lot more....

Good things: - no skin itch or rash – as she had the reaction on Azithtomycin and no other joints are affected, including her other knee (the better knee), except back and neck on Sat. only.

Is this a Herx ? It seems very localized though. If it is a herx - what to do – stop the Clarithomycin? Or go to half dose ?
Is there anything good to do to relieve the symptoms of a Herx?
How long does this mostly last.

If not a Herx – what is it and what do we do? I had been moving the knee more a few days before it started getting sore on May 2nd.

Today’s Bad Symptoms on left knee:

Sharp shooting pains(like sharp threads) going up my thigh from my left knee, very swollen, feels like my knee has dissolved, just super squishy. Back of knee is super sensitive too, feels like a curved C shaped knife wrapped aroundaround the top and sides of my knee – is cutting in..

Right knee is fine, had lots of back & neck pain & joint cracking in back , neck and knee on Saturday, was really bad and then it went away.

My Left knee was locking on the outer left side, when I tried to straighten it, while sitting yesterday, today just so swollen and hurts not matter the position…..

Thoughts....??? - did I just do or have something happen to the knee to badly irritate it, or a Herx or what do you think.....??

Will be talking to my doctor - but curious to see what everyone thinks...

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 36310
   Posted 5/9/2017 1:53 PM (GMT -6)   
Sounds like a herx to me, so you need to increase the detoxing, and use binders such as activated charcoal or natural clays that are safe to ingest. There are other binders that other members like, and I'm sure they will be along soon. If you aren't sure just what to add, you can ask for recommendations, and do be sure to let us know what all you are already doing for detoxing.

You may wish to lower your dose of Clarith. to half dose for a few days to help lower the number of toxins being produced so that your body has a chance to 'play catch up' with those toxins.

With the swelling, I would also suggest anti-inflammatories as well. Also, ice may help ease things, as it will help reduce the swelling.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)

Purrrsiankitty
Veteran Member


Date Joined Dec 2016
Total Posts : 1780
   Posted 5/9/2017 3:10 PM (GMT -6)   
Diametreous earth food grade is another binder you could try.

Also, tumeric is an anti imflamatory that works for some.
Moderator, Lyme Forum

Dx May 2015 Quest pos Elisa/neg WB. Doxy only. Restest Igenix lyme pos, neg CDC, 18 +, **23-25 IND, *30 +, **31+, **34 IND, **41+, **83-93++. Retest12/16 Igen 41+, 83-93+ whole blood-plasmid pos. Retest Lyme/co's. Neg co's. Suspected Bart. 7/15 start 16 mo of doxy, azith, ceftin. Finished 09/16. Cowden start 12/16 and stop April 2017 to deal with yeast and leaky gut

Lyme Yes or No ?
Regular Member


Date Joined Nov 2016
Total Posts : 29
   Posted 5/9/2017 7:44 PM (GMT -6)   
Hi:

Forgot to mention one symptom from Sat. and Sunday - both legs felt like they were made of Lead.

Not on any Detox... just antibiotics...

Lyme Yes or No ?
Regular Member


Date Joined Nov 2016
Total Posts : 29
   Posted 5/9/2017 7:48 PM (GMT -6)   
And what are the best "over the counter" anti-imflamatory to take for knee pain.. ?

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 36310
   Posted 5/10/2017 9:46 AM (GMT -6)   
You really, really need to be detoxing too though. It sounds like a herx, and the only way out of a herx is to detox. Please do start using the suggestions found either in our "new to Lyme" thread or here to help your body lower the level of toxins in your bloodstream: www.tiredoflyme.com/detox-methods


Some of the easiest detoxing routines to me are dry skin brushing, Epsom salt/peroxide soaks, taking things like ALA, milk thistle (although I'm allergic and don't use this), dandelion root extract, and lemon water.
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New Lyme case 8/2014 - Healed 1/31/15 - unknowingly had Asymptomatic Babs and Asymptomatic Bart, being treated now though (2/2016)

Lyme Yes or No ?
Regular Member


Date Joined Nov 2016
Total Posts : 29
   Posted 5/14/2017 7:50 PM (GMT -6)   
Hi All:

After 13 days, my rough time is coming to an end.... my swollen knee has almost disappeared and am feeling much better....

So looks like it was a Herx....

Now I am wondering when I should start taking the Clarithomycin - that seemed to behind the Herx......I was on a half dose for a few weeks.....when I doubled the dose, to my final amount....the Herx started a day later....

I could start @ half dose again.... or should I go back to full dose...?

How long should I let the Herx settle down, before I add back in the drug that started it.....

Anyway - I am much happier today.... smile

Comments and advice ????

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32558
   Posted 5/14/2017 8:54 PM (GMT -6)   
What is your full dose - 500 mg twice daily? If I were you, I would do 500 mg once daily for a couple of weeks...see how it goes...before going to 500 twice daily. If your knee swells again...then drop back down. At least you will know what is causing it this time and can react quicker?

But, keep up the detoxing.
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Lyme Yes or No ?
Regular Member


Date Joined Nov 2016
Total Posts : 29
   Posted 1/18/2018 10:07 AM (GMT -6)   
Hi:

Long overdue Update....last new drug added was Minocycline added in Sept. 2017. Been taking the whole basket since then and slowly getting better....

Doctor said I am doing good and started slow drug ramp down on Jan 2nd. Stopping one drug a month, so be off all drugs in June. (I had started the drug ramp up on Dec 25, 2016)

All the Lyme Symptoms seem to have been pushed back from all of my joints, muscles and brain. Now in second year university and doing good. The only thing left is my knee, where I first had problems....I have to limit my daily movement to keep the knee from getting really sore.

I have a lot of pain just above my knee. Lyme doctor thinks it is mechanical, I was an extreme long distance runner..... MRI last year showed knee joints were good, - just knee cap tracking a bit to one side....

I am wondering what people think of pain about a inch or two above the knee, after a year of drugs..... Could it be inflammation in tissues from left over effects of Lyme...If so how long does this take to fade away (assuming all the bugs are dead, just residual protein or overactive immune system causing the pain)

PS: Thanks for the help everyone.... nice to know people care..... because the Canadian government and Dept. of Public Health sure don't care - they just seem to be digging into the "Bunker of Denial"

PeteZa
Veteran Member


Date Joined Jul 2015
Total Posts : 9728
   Posted 1/18/2018 10:17 AM (GMT -6)   
Welcome back and so glad to hear the good news, except for the knee.

I hurt my knee in 2005, torn meniscus. I had it scoped and the tear was smoothed out. It is a fascinating video - lol. I tore the other one, but not as badly and had it scoped also.

I was bit by a tick in 2015 and the first place I had pain was in that first hurt knee.

Now I have been healed for almost 2 years (in June) and my knee hurts, but it definitely is mechanical. I am pretty much bone on bone.

Here is what my orthopedic surgeon said as he looked at my xrays and MRI's. He said my second knee, the one that doesn't hurt so much at all, is really bad. And my first knee, the one that aches always and Hurts when I overdo it, is in better shape.

I asked him how come the one that looks so bad to him doesn't hurt. He said these wise words to me.

Xrays and MRI's do not show pain. They are just a test. An indicator. Part of the diagnosis. They are never the final say.

Pain is real and pain should be addressed. It is a symptom that something is not right.

I hope you find relief on your knee and you go on being healthy!!! Hope this was helpful.

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 36310
   Posted 1/18/2018 11:51 AM (GMT -6)   
Considering that for many, the first symptom is often the last symptom to leave - I would say that you may regret stopping treatments while you still have that one symptom. Can you transition to herbs or just stay on the abx protocol for another couple of months? We should be symptom free for 2 or 3 months to help ensure that we are actually in remission, and not just that the meds have successfully 'subdued' the bacteria so that we feel symptom free.....until the protocol meds are stopped and a few months later the symptoms creep back in.

But, whatever you decide (as this is a highly personal choice!), I wish you the best of luck!!! I hope that you are symptom free and living life soon!

By the way - congrats on being in your second year of university!!!
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

Lyme Yes or No ?
Regular Member


Date Joined Nov 2016
Total Posts : 29
   Posted 1/18/2018 11:57 AM (GMT -6)   
Will be on a 6 month drug ramp down....first drug to go is Malarone. So not actually starting the ramp down on the many antibiotics for a while.... will look at my program on the ramp down....will still be on various doses of abx for the next 4-5 months.... will look at my ramp down program and see which drug is removed next..... I will have some extra abx left over, so I have some flexibility....

Traveler
Forum Moderator


Date Joined May 2007
Total Posts : 36310
   Posted 1/18/2018 11:59 AM (GMT -6)   
Just keep an eye on your progress as you ramp down. Fingers crossed that it all goes smoothly and your knee pain subsides before you are completely off the meds!!!

Please do come back and let us know how you are doing! We would LOVE to add you to our success stories!!!
Herb only treatment for Lyme & Bart ended 12/11 - no active symptoms for 2 yrs -Herb only treatment for Babesia ended 12/12
www.healingwell.com/community/default.aspx?f=30&m=2977364
Had Lyme, Bart, Babs, RMSF, Ehrlichia, Myco, Anaplasmosis, EBV
New set of infections 8/2014 - still treating.
Come visit me: dogwoodtraditionals.freeforums.net/

Girlie
Forum Moderator


Date Joined May 2014
Total Posts : 32558
   Posted 1/18/2018 1:51 PM (GMT -6)   
How are you doing the ramp down?

have you thought about this? Instead of removing one drug...

What about going to a non-daily dosing...so a pulsed approach of all you are now taking.

So maybe go to a M/W/F dosing for 2 weeks on, and one week off.
...or something like that.

After a few months of that, then you could increase to two weeks off.
( so you're only taking the meds about 6 days per month.

Do that for several months....

And, as Traveler said - keep us posted!
Moderator, Lyme Forum
Symp started April/2013; Buhner's Lyme May 15-July24/14; Igenex pos. July 3/14
Doxy: July 4-Aug.24/14;Zithro July26-Aug24/14; Amox + Proben. Aug. 29/14;
added biaxin Sept. 26/14
Disc. amox,added Ceftin Nov. 20th.;
Disc. biaxin added Buhner bart herbs Dec/14;Jan/15 pulsing Tinda (w/ Ceftin);
Abx/herb break Apr-July/15; July-mino; Aug. added Rif;
Nov./15 mino - to biaxi

Lyme Yes or No ?
Regular Member


Date Joined Nov 2016
Total Posts : 29
   Posted 6/17/2018 8:49 AM (GMT -6)   
Been off everything for a month - but still taking Celebrex for my left knee..... Have a good summer job and a boyfriend.... Life is pretty well back to normal...

Think my left knee is a combination of too much running, some misalignment and Lyme after effects.....

Went to a good foot doctor, she looked at my walking motion and she made custom shoe inserts. This helped keep my left knee from leaning in slightly towards my right knee. This seems to have helped a lot....

But still have the left knee to get sorted out.... Could be a physical problem and Lyme after effects.... kind of making a 1 + 1 = 3 situation. I can move so much a day - but have a definite limit of how far I can walk a day.

So after 16 months of antibiotics - with all my other symptoms gone, except the knee where Lyme first showed up - what after effects should I expect ?

Have a last appointment tomorrow, with my US Lyme Doctor, so will ask him this stuff....but the appointment is also want to go and thank him for getting my life back to me.....

Thanks Girlie, Traveller and all the rest.....

Notime4lyme
Regular Member


Date Joined Dec 2017
Total Posts : 272
   Posted 6/17/2018 9:44 AM (GMT -6)   
Have you tried cold laser therapy? It really helped my knee. I also realized when I tried to walk when my muscles felt achy, I would start dragging one leg, and it made things worse.
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