Not feeling too optimistic...

I am shocked that anyone would say its not a typical lyme picture as it seems everyone is different. Have you been tested for coinfections? Testing is unreliable, but if you get a positive it could help. Some of your symptoms sound a bit like bartonella. It may take a few abx combos to find one that works good for you.

Post Edited (k07) : 4/13/2016 2:14:59 PM (GMT-6)

Thanks for the replies. Girlie, if I was having die-off shouldnt I be experiencing flu like symptoms? It just mostly seems to be my original symptoms, but worse than prior to treatment. Some days are worse than others, but it was also like that before treatment.

For detox, I drink about 4 cups of green tea and I've been taking epsom salt baths about every two-three days. Using charcoal every night. I'm taking a few herbs my LLMD says helps with detox as well.

Just wish I knew whether or not my body was responding to the treatment.

One of the speakers at the chronic lyme summit spoke about the iSpot lyme test and its potential to track if your responding to treatment. Also, it can give "clues" to coinfections. I hope it ends up being as great as they say.

Could be a hundred different things.
I had a couple years of going t different docs until I found one that
was good at mystery illness. My advice-go with your gut and don't be afraid to se another doc
but find one that is good with mystery diseases. Don't change until you think you found someone helpful-this isn't a marriage and you can see another doc for an evaluation.

Dry brushing = you buy a natural bristle brush with a long handle. Then prior to your epsom baths, you gently brush you body - brushing toward your heart.
It gets rid of dead skin cells, and also stimulates the lymph system...which adds to the detoxing.


- Don't overdo the exercise....you don't want to use all your energy...it's needed for the body to heal.

Are you drinking lots of water? You could squeeze some organic lemon juice into some glasses. I drink with a straw - so it bypasses my teeth. (the lemon can damage the tooth enamel)....then I rinse my mouth with clear water after...and don't brush my teeth right away...

Another good detox idea is apple cider vinegar, you can try it.

Hi saiyaex

Sorry you are struggling - this is a marathon, not a sprint.

You've had excellent input by others here, so I'll throw a few additional ideas into the mix:

I totally agree w/ other posters that herxing symptoms can be all over the map and when you're taking so many things simultaneously it's tough to tie specific symptoms or reactions to an infection or a specific component of the treatment.

It's very possible it's just too much for you, right now -- to complicate matters (which you don't really need) sometimes our bodies have DNA-driven broken links in the detoxing and methylation process that need specific support--no matter how much detoxing you do.

If your treatment kills too much too fast for your body to process and flush out of your body, the debris and toxins from the dead infections can often create the same types of symptoms as the infections themselves, and then some, so detoxing at the same rate as you're treating is essential.

Honestly, I would ratchet the treatment down a bit so that your symptoms are a little more manageable. I would strongly consider talking w/ your LLMD about concentrating on maybe the dominant one or two infections and making progress with symptom reduction before moving on to treat the other infection(s). Your dominant infection is the one creating the most symptoms--although sometimes this isn't easy to determine.

Another suggestion is to talk w/ your LLMD about possible viral load(s) that could be causing the flu like symptoms and create a drag on your immune system and the treatment itself.

Regarding flu-like symptoms... I really think this is caused by a viral load. I have not had the flu since I think I was infected 18 yrs ago. I've had a cold maybe twice since then. I have a theory about this but that's another topic.
- Anyway, I started a new IV antibiotic for bart 3 wks ago and 2 wks in, about an hour after my infusion it was like I got hit by a Mac truck. I was sitting at my table and BAM! I felt like I had the flu--hadn't felt that in 18 yrs.
- I went to bed and work up about 20 hrs later. I also increased my antivirals when this happened and felt much better in a couple days.
- So, did the abx trigger a bart like symptom or did the abx killing bart overwhelm my body and allow my viral load to dominate? Who knows but the antiviral helped.

Regardless, I definitely think you should investigate Alka Seltzer Gold --this is not the typical AS but you should be able to find it in health food stores and probably on Amazon.

And the dry brushing can really help with circulation. Grapeseed extract can also help w/ circulation.

Hope this helps a bit -
p

I'll definitely try some of these detox methods. I've never actually had flu like symptoms except in the beginning, but my LLMD has not discussed antivirals at all. I'm fairly sure I am having some sort of circulation issue, my hands appear quite red at the end of the day. They look almost inflamed. Symptoms are also much worse towards the end of the day. Does that sound typical?

I would second Pirouette on the low Dose Naltrexone.

I was on hydrocodone for the pain for almost 10 years and then my doctor retired and the practice dumped me. I found another practice that would treat "Fibromyalgia" which is the diagnosis in my records. They did write for the hydrocodone but only as a stop gap and then sent me to a pain clinic.

At the pain clinic, the only treatment they would offer was PT. I had already done PT multiple times along with every non-narcotic pain reliever know to man. I asked about LDN and the docs response was "how do know about LDN" and when I answered she chastised me about the forum. She actually said "you should not be reading anything on the internet." Right you offer me nothing and then chastise me because I go out and find answers myself. Yet another doctor with a GOD complex.

Tramadol also works for some people and the one dose I had worked miracles on my pain. I'm sensitive to medication so I had a very severe allergic reaction. But it definitely took my pain away for 4 or 5 hours.

On the LDN, the one good piece of information was to call one of the compounding pharmacies and ask if they have filled scripts for LDN. If they have get the doctor's name. Not all doctors know about it or are comfortable writing for it.

Another option is a website ldndoctor.com but only if you are in the US. It's a telemedicine group. You make an appointment and they send you a link. At the appointment time you click on the link and you open up a video link kind of like Skype. I forget how much the fee was.

So I went with the Fibromyalgia diagnosis because in all the websites I saw that Fibro was always on the list. I thought if I mentioned Lyme they wouldn't write the script.

The doctor I worked with has a specific pharmacy she uses so she sent the script to them, then they called me for payment information before shipping it to me. I want to say it was $45 for a 90 day supply. She had me start at 1.5mg but I could work up to 4.5mg, which I did.

I find that it works pretty well for me. Most of my pain goes away, but it really isn't too much different than the hydrocodone. I found that in general it actually works better.

So the way it works is it block the opiate receptors forcing the body to create more of our natural opiates. For this reason, they won't even consider prescribing it if you are currently on an opiate medication. If you take both, you end up having symptoms of overdose.

I agree with everyones comments that your symptoms can definitely be Lyme.

As far as the muscle twitching goes, that was one of my worse symptoms. I would get stabbing pain especially in my back and I had times where a muscle in my throat would just seize up.

I ended up trying every muscle relaxant available and ended up on Soma. I don't know if there are any herbals the help that but i would get Stephen Buhner's new book because he covers a lot of symptoms. As far as the Soma goes, it was the only thing left after trying many meds that didn't work. But its very strong and you can end up physically addicted. Some doctors are hesitant to write for it because it is used with illegal drugs to produce a greater high.

Hope something in my ramblings helped,
Kim