Anyone treated for lyme have seen long term positive ressults?

[Gaucho25]

Just wondering if those of you diagnosed with lyme disease and on treatment or have been treated in the past are feeling better... if so, please tell how long the treatment lasted and how much better you feel. IF you have not seen any positive results or feel even worse please state that. I have been sick for 3.5 years, then was on doxy for 4 months and felt good for a month and a half, then symptoms sarted again, feel horrible at the moment and restarted doxy 4 days ago. Im also taking cat's claw, will keep you guys posted.

[wonko]

I've been wanting to respond to this post and get part-way through but never finish!  So I'll be brief and say that yes, I treated late-diagnosed Lyme for several years and have improved greatly.

I don't know exactly when I was infected, but I was "bad" (with neurological involvement) for about a year before diagnosis.  I treated (and still plan to treat more after an upcoming [not Lyme-related] surgery is out of the way) starting in Fall 2008.  So I guess almost 4 years!  All oral antibiotics, no IVs, I've tried some herbal treatments and did have some luck with cat's claw but I feel the antibiotics are what were most effective for me.

I have been extremely fortunate to have very few yeast problems despite long term abx.  I take the "cheap" probiotics here and there, and sometimes drink the kefir probiotic yogurt drink.  I'm NOT recommending my lax approach to keeping yeast at bay, I think I am a very unique case and I am just naturally somewhat resistant.  As advised above do take the issue seriously and figure out what your body needs.

Anyway, while I still don't consider myself cured, as I do still struggle daily (esp. with fatigue, brain fog, inflammation), when I look back it is really nothing short of amazing how much better I am now than years ago.  Treatment has been tough for me, I did at times feel worse before feeling better, in fact the first 9 months I treated were all pretty awful, but I'm very glad I stuck with it long enough and now have a higher quality of life.

Best of luck!

[mojogal]

Dr James Schaller recommends Dr Ohhira's probiotics which you can get on amazon and it includes all you need.

[JackieCalifornia]

Rico,

To be tedious by repeating the response to you that I just posted:

Do read the label on your probiotics closely to see if Saccharomyces boulardii or anything other than Lactobacillus is listed on the label.  It was the S. boulardii (which is a yeast) that gave me such trouble when I was under treatment for Lyme.  

The only reason my LLMD had for recommending the S. boulardii was so that the antibiotics I was taking would not kill the probiotics, since yeast is not affected by antibiotics.  I think the LLMD had patients who would take ALL their meds at the same time, and the antibiotics would as a result kill the non-yeast probiotics, making them wholly ineffective.

End of speech.  Take care!

[Ricobord]

My doc recommends the high end probiotics that you keep in the fridge. The original recommendation was VLS#3 and now I am taking Klaire Labs Complete.  They are more expensive, but work better than the off the shelf brands. I am doing better with 2 caps a day of the good stuff than I did with 4-6 caps of the cheap stuff.

[mojogal]

I was treated with doxy first before getting the results back with the Bart's and babs and it did help me even though I know I was bitten 18 years ago and who knows if re-infected.
I was like that girl in under my skin, and now I can walk and think....well sometimes, think., lol

[JackieCalifornia]

Star,

Even if your upper stomach isn't upset, your gut is also part of the digestive system, so I wouldn't necessarily say it's not connected to the doxy.  

About the probiotics, the most common kind is Lactobacillus acidophilus (L. acidophilus), but Florastor (S. boulardii) is available at places like health food stores and some pharmacies (no prescription required).

I was also told to get refrigerated probiotics at the store, and to keep them in the fridge at home, because the little bacteria die off faster at room temp, so you're not getting the maximum effect.  

Hope you feel better soon.

[JackieCalifornia]

To quote you:  "What is it with medical science and lyme disease?
When are 'they' gonna get out of the denial phase?
Probably, only when it becomes a full blown epidemic."

I think we're there, in the epidemic phase.  If you add in all the (imo bogus) diagnoses like fibromyalgia (if it's really Lyme), and the non-symptomatic people out there ....  well .....  that's a big number already and getting bigger all the time.

"There is none so blind as he who will not see."  That should be the motto of the IDSA.

[TheLightSeeker]

In chronic conditions only a combination of abx will work in the long term.
Bb has the incredible ability to change form (Polymorphic-3 different forms)
in order to evade detection or bactericidal attacks.
Plus the fact that it has the luxury of terrain choice,
tissue or fluid, means that each has to be targeted by different antibiotics.
Another choice: it has intra or extra-cellular options, so again each has to be targeted by different antibiotics. Combining cell wall (for extra cellular Bb) and L-form(for intra cellular Bb) antibiotics is contra-indicated though.

The above possible combinations of Bb location and form therefore are :
3x2x2=12  That means that 12 different specific combinations of antibiotics
need to be used from 4 different types available for Lyme's treatment (Without any guarantee that they will work. There's a lot of trial and error,
until the right abx combo is found)

Every treatment HAS to be individualized carefully, considering
so many other variable factors, such as illness duration,
patients tolerance levels, response, age, co-infections, immune function...
So, all this means that it is a medical logistics nightmare!

What works for one may not work for another and vice-versa.

Cheers.
Niko

P.S.
Go to the coconut research center website for information on virgin coconut oil which is: antifungal! antiprotozoic! antiparasitic! antiviral! antibacterial!
it may help with constipation issues and if you use it for "oil pulling" daily,
it will rid your salivary glands and oral cavity of BILLIONS of harmful bacteria and toxins. (I've been doing this for years!)
By the way did you know that Bb produces "Borellia Neurotoxins"?
Search for :
"A Novel Toxin (Bb Tox 1) of Borrelia burgdorferi
Mark J. Cartwright, Ph.D.*, Suzanne E. Martin, Ph.D. and Sam T. Donta, M.D."
It is item #12
This has been grossly overlooked and underrated for the last 13 years!
There are no direct tests to detect this neurotoxin and gauge the levels of toxicity and damage.
What is it with medical science and lyme disease?
When are "they" gonna get out of the denial phase?
Probably, only when it becomes a full blown epidemic.
Grrrr!

[Stargazer_Lilies]

The only factor I could point pin is doxy at 400mg, and I didn't had the issue with doxy at 200mg daily. The diet is the same, not a lot of sweet, little sugar, lot of vegetable, white protein, and such.

I'll look up doxcycliine side effects although it did not upset my stomach.

At phramacy store, I looked at the labels of probotics, they all contains the same things. I have to find natural  health store to see if they have any different ones. I am still looking at various probotics online.  

Thanks.

[JackieCalifornia]

My LLMD said he had never seen anyone else have problems with the yeast-based probiotics ... I think from reading various things that there are some people who are more susceptible to fungal infections than others, and that trait may run in my family, looking back.

I was bloated, my eyes were red, I had brain fog similar to that from Lyme, my teeth ached and were loose-feeling.  I didn't realize what was going on for a long time because the symptoms were not that different from Lyme itself.

The probiotics I took were S. boulardii (brand name: Florastor) and the advantage is that antibiotics don't wipe them out as soon as you take them.  Regular antibiotics like acidophilus are bacterial (not yeast like Florastor), and antibiotics kill the acidophilus UNLESS the meds and the probiotics are taken at least several hours apart so they don't run into each other in the body.

I think my doc assumed that patients would take everything at once and forget to space out the acidophilus from the antibiotics, but if he had explained that to me up front, I would have made sure to take them as far apart as possible so they would not interfere with each other.  I think the instructions say at least 3-4 hours apart, but I forget now.

I didn't have any of the problems you are describing -- I was very bloated and brain-fogged as mentioned above.

You might try different probiotics (read the labels and see what is in each of them) to see if you tolerate one kind better than the others.

Also be careful to eat a healthy diet and not a lot of snack food, sweets, etc.

Final note:  doxy is known to upset the gut.  That may be what is happening to you.  Search for

                        doxycycline side effects

and see what you find.

You might also ask your doc if you can take another antibiotic besides doxy -- remind the doc that you did NOT have these problems on Rocephin IV, so it points to the doxy as the problem.

[Stargazer_Lilies]

Probotics and systemic fungal infection, during that time did you ever experience BM problem (constipation, dark stool) ?

I am nervous about probotics causing me problem right now--my BM keep getting worse. It was a lot better while on Rocephin IV but not now on Doxy.

I am trying to figure out what trigger changes in my BM for worse.  

[JackieCalifornia]

After ~1.5 years of being quite ill, I was diagnosed almost 5 years ago with Lyme and babesiosis.

Treatment was:

-- azithromycin and atovaquone (for babesia) -- 4 months

-- clarithromycin and cefdinir -- 5 months (for Lyme; terminated early due to edema)

-- [drug holiday -- 2 months]

-- azithromycin and metronidazole -- 5 months (terminated due to systemic fungal infection from yeast-based probiotics intended to *prevent* fungal infection -- but yeast is a fungus, and it colonized my body)

It took me a long time to stabilize and get rid of the fungal infection, and at that point was too worn out to go back on meds.

Note that I was never on doxycycline.  I have not researched the point extensively, but it is my impression that doxy is useful only very early in a Lyme infection, before the bacteria have found their way into biofilms and other areas of low blood flow, where regular antibiotics cannot reach them.  I had spent over a year going from one clueless doctor to another, until finally finding an LLMD, so my infections were well established by then, and I think that ruled out doxy as ineffective.

You may wish to research various antibiotic treatments -- there is quite a bit of information available online.  The ILADS [dot] org website is useful, and new approaches are devised all the time.

Also, if you have not been tested for co-infections such as babesia, bartonella, Ehrlichiosis, etc., then that should be considered as part of the picture.  I have read that perhaps of all those with Lyme also have at least one co-infection carried by the same ticks.