HealingWell
Search Close Search
☰

Has anyone here not responded to treatment at all?

Support Forums
>
Lyme Disease
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 2/3/2013 3:47 PM (GMT -5)
Hi,
I could use some input. When I was first dx with Lyme, bart, possible babs, I did very well on doxy, had a classical herx and then felt way better. Subsequent, and much more intense (gathering in intensity) treatments produced very little reaction/herx or improvement. No lasting gains, I slide back to where I was before. I moved from orals to pulsed IVs and back to orals with abx. I notice a very small immune reaction/herx when I first start something new, but it quickly subsides. I am basically where I was when I first started treatment. I do not have allergies and do not get colds either. It feels like my immune system is totally dead although I know this is impossible.

I did get a cold and crazy immune response when I did pulsed IVs. But then I gave that up because I thought I would develop resistance on the pulsed schedule.

Does anyone have a clue what could be going on here? It's extremely scary. Now I'm hearing parasites can really prevent successful treatment. It used to be biofilms.

Does anyone know anyone else like this, and have any clues as to what would be going on?
Posted 2/3/2013 5:32 PM (GMT -5)
There are a lot of people on here, that have chronic lyme like myself, that did not get better with the (normal ) treatment. Now I am going a different route, change of diet to sugar, dairy , and gluten free, trying to not feed the parasites. Then When I am a little stronger, my doctor is going to go after the parasites, in the mean time I am trying to boost up my immune system.

I am going to get a infrared sauna, detox the body as much as I can, and try to rid of the parasites. For myself, I did physically see some worms like buggers come out, so I do believe I am on the right track. There is a powder that helps to detox the body I am trying to get my hands on , I know its easier to get in places like Canada, and it helps detox the body better.

My doctor will tell me at the end of the month where I am at, but my liver, blood count are both pretty bad right now. He said I am at a chronic stage, and it's has to starts with the diet.

Hope that helps.

justme
Posted 2/3/2013 5:35 PM (GMT -5)
It sounds like from a lot of the veteran members on here that they had to try a lot of different things before something stuck. A lot tried abx first, and then herbals or then diet, or then the Jernigan protocol. Definitely doesn't seem like a one size fits all box. Have you tried other things besides antibiotics? It seems like a lot find the "one" thing that really kicked the butt of the infection. How long have you been in treatment for?
Posted 2/3/2013 6:24 PM (GMT -5)
Six years!
Posted 2/3/2013 6:36 PM (GMT -5)
Hi SuperLuke!
Welcome to our little community! I'm sure glad you found us!!

Although you aren't 'new to Lyme', it would be really great if you would read through our "New to Lyme? Start here!" thread that site at the top of the forum. It's packed full of really important info, helpful links and pdf's, symptom lists, and more.

There are several reasons why you could be 'stuck' in your treatment. One is that you could have a co-infection that is stopping your healing, another is that you may not have found the right protocol for you. Each of us usually needs something just a bit different than everyone else. As you said, parasites and biofilms also are a consideration.

Also are you detoxing? Especially with chronic infections, detoxing is incredibly important. www.encognitive.com/node/5768



I used abx for a full year without anything good happening - I only continued to get worse. Once I switched to Chinese Medicine and my Practitioner took 6 months to get my body balanced back out some, I started my Lyme treatment and in 2 months time I was feeling improvements. But it's different for everyone.
Posted 2/3/2013 6:56 PM (GMT -5)
After more than 10 years, nothing has helped me yet.
Posted 2/3/2013 7:26 PM (GMT -5)
Thanks Traveler. I'm a Lymenet veteran so have seen a lot of stuff before. Will take a look.

Regarding your switch to TCM how did you find a practitioner well versed in this stuff?
Posted 2/3/2013 9:37 PM (GMT -5)
DO you have a LLMD that is well versed in building the immune system, diet, supplements, etc. You need someone that can really look at the entire body to help you heal.
Posted 2/3/2013 11:52 PM (GMT -5)
Not really. Do those docs exist? Mine is considered one of the better LLMDs but I don't think he has time to cover everything. I'm pretty good at figuring out on my own through research what to take. I take high dose Vit C. cordyceps and eleuthero to support the immune system.

It's the oddest thing, it's like the treatment killed my immune system somewhere along the way. When I tried Transfer Factor I got a little "tug" like my immune system was trying to turn on but was blocked somehow. Same thing happens on abx or herbs, esp Byron White, but the immune response stops. It's almost like resistance, but resistance doesn't develop in one day, and you can't be resistant to a med or herb you've never tried.

Now I'm looking at the MTHFR thing, and parasites, but I dunno. I don't know if I believe parasites can really block treatment.

My LLMD doesn't have anything to say.
Posted 2/4/2013 8:05 AM (GMT -5)
Well, I'm glad you stopped by to see us then!

LOL! I was just looking for a practitioner of any type that would agree to see me!! I kept using that dirty word, "Lyme" and was turned away from every other doc in my area! They told me that they 'weren't prepared to take on such a complicated case at this time." eyes

When I found my TCM practitioner, she wasn't really aware of how to treat any of these diseases. and was a bit concerned in trying! I was pretty desperate to find any doc that was willing to see me to help me stabilize after stopping the abx, so she agreed to do that much. As a Holistic doc, she just started doing as Mystery Illness has said - building my immune system and getting my body to start working as it should be once again.

By then my doc was interested in what was going on and started reading. I brought in suggested reading a few times and she took it from there. Holistic docs look at the body completely different than regular MD's do. They believe that the body will help heal itself if it's in working order, so if infections are treated and the body supported properly, healing will occur.


We've got some really smart people on this forum, so I would suggest that you do some poking around and ask all the questions you need!
Posted 2/5/2013 12:37 AM (GMT -5)
Hi SuperLuke,

Sorry you are going through this!

Yes, to your question about docs who treat parasites, biofilm, etc. I know of several personally. (on the west coast and in the midwest). And others from researching online.

You could ask for referrals on this website for holistic docs.. They can be MD's or ND's or DC's.

In the more holistic way of looking at chronic lyme disease parasites, biofilm, viruses and coinfections are not seen to block treatment. (All of these are very common, by the way.) Instead, the docs assess all of the various infections and see what your particular body needs to treat first. sometimes treating several things at once. It is done in layers of a sort.


Addressing biofilm is critical. And doable.

My current doc treats the lyme first and possibly sometimes co-infections or yeast at the same time. I am getting wonderful results. without pharma abx.

Detox is really important, too. The toxins from the various bugs are what cause the symptoms, so clearing them out is really important.

And getting hormones balanced so the body can heal (adrenal and thyroid in particular).

Good luck! Help is out there. I can share the names of the docs I know if you are interested. Just email me.

Take care,
Nan
✚ New Topic ✚ Reply