Tell Me All About Your Lyme Experience.

[misstraci]

I'm curious about everything involved.

Do you have lyme? Did you have lyme?

When were you diagnosed and who did it (pcp, llmd, etc)?

Did you have symptoms for long prior to diagnosis?

Did you see the tick? Bulls eye rash?

What treatments did you use and did they work?

Are you still experiencing aftermath from your disease?

and add whatever you'd like. Just want to learn everything possible. Thanks

[bebe127]

misstraci,

I don't have lyme, but there is a woman named Sarah Young who wrote a book called Jesus Today. It is a faith-based book, however she wrote it when she was experiencing chronic illness due to Lyme Disease. Might be worth a look up. She lives in Australia, I believe, however traveled to Arizona (I think) to get treatment. The book was born through her experience. I think there is even a facebook page for her called Jesus Today. Hope it helps and you get answers.

Be well

Bebe

[Allotmenteer]

Do you have lyme? Yes, I do! Did you have lyme? Still got it.

When were you diagnosed and who did it (pcp, llmd, etc)? 4 years ill, then diagnosis, 2 years treatment, 2 years getting worse. Total 8 years. Found a private, non-NHS LLMD who is sadly no longer treating Lyme.

Did you have symptoms for long prior to diagnosis? 4 years. Sent from pillar to post, told we don't have Lyme in the UK. misdiagnosed with a host other stuff I didn't have.

Did you see the tick? Bulls eye rash? Not bitten by a tick, I was infected by biting deer fly two years running. Saw them bite me, saw the bullseye rash appear, had no idea what it was at the time.

What treatments did you use and did they work? Two years of 300mg Doxy, which proved to be bacteriostatic rather than bacteriocidal. Soon as I stopped, symptoms got worse. I should have had longer, more aggressive treatment.

Are you still experiencing aftermath from your disease? Trying to start new antibiotics but stymied by newly developed dysautonomia, food and drug sensitivities, lack of LLMDs in the UK, no money for proper treatment, utter ignorance in the NHS.

My life is now a living ****.

:-((

[misstraci]

thanks.

BeBe, I will have to look up that book, thanks for the recommendation.

Allotmenteer, I'm so sorry. That all sounds super crappy. I hope you're able to find a new dr soon that is knowledgeable and can give you proper treatment that isn't outrageously priced. I can't believe the illness is so controversial and hard to treat as well. Years of harsh drugs and still can't kill the sickness.

[issie]

There are alternative herbals that can be used along with enzymes. There is a lot of info on the net with information of how to use these things. I have a rather long post going on about protozoa and co-infections. New Doctor - New Ideas. Yes --I have these too. In treatment now. With the alternative things, antibiotics and complete diet change. Seeing results in only 4 months.

Issie

[corina]

Misstraci, there should be a film, called Under your skin. Have you seen it?

[misstraci]

thanks Issie!!! I've seen you guys' post going back and forth, I have not had the attention span to sit and read it yet. but I want to!!! I'm glad you are seeing results!

Corina.... I have seen that movie/documentary! It freaked me out a little bit. but very informative.

[klgpdx]

I would also love to learn more.

My naturopath is having me tested for Lyme. I have had two tick bites that I know about. One when I was 7 or 8, another when I was 14. I don't remember a rash the first time. The second time I had a rash exactly one year later in the exact same spot. But apparently you can have Lyme without a rash.

She said the past tests for Lyme are not very accurate, the ELISA and Western Blot. I read that they are around 30% accurate. This month a new test came out called iSpot, which is supposed to be 83% accurate and not have false positives like the other ones did.

She also said another patient with the same major chronic conditions as me (Inappropriate Sinus Tachycardia and Hypersomnia), and it ended up that she had undiagnosed Lyme.

I am trying not to get my hopes up that there is an answer to this stupid thing. But wouldn't it be awesome if there was?

[GypsySoulNicole]

I am currently under naturopath treatment for lyme. I got to see the spirochetes and co-infections with my own eyes during a live blood analysis with darkfield microscopy in December. While this method is not fda approved for diagnosis, there is no question in my mind now.

I do not think I was bitten by a tick. I never had a bulls eye rash. I had no idea lyme was so controversial, I've learned a lot in the past 4 months. I started out with Samento (TAO free cat's claw), I got it from a naturopath store for around $30. I was also taking grapefruit seed extract with it. I eliminated a bunch of toxins (like soaps, detergents, beauty products, diet pop), changed my diet and added natural stuff to boost my immune system. I take tropical traditions coconut oil in my hot cocoa or coffee daily as well as using it for lotion and beauty stuff. I also take garlic and tumeric and am trying to eat my viatmins with juicing, grassfed meats and butter.

At first, the herxing was crazy. I was twitching and wiped out. The first month, my brain fog started clearing, but I did get shingles, which was rough. Then the next month my energy started coming up. I had a follow up appointment and my blood looked better already. There was still borrelia spirochetes, but not as many, and my cells were looking rounder. We then added a second med called Banderol. It is supposed to target the coinfections as well, including Bartonella. The Banderol is not supposed to produce the herxing like the Samento can, but it was kicking my butt for awhile. I noticed emotional/mental issues once it was added. I'm almost always a happy go lucky person, even when I'm sick, I try to find the humor, but the Banderol turned me into a grouch for a few days.

I thought I was gonna kill lymes in super stealth speed, I was feeling so good by the beginning of month 3 (March). But, for the past few weeks my POTS, neuropathy and pain has been bad again.

I don't feel like lymes is my final answer for my dysautonomia. I think that there was an immune problem (methylation related) and lymes was just another attack on my already toxic body. But, I'm praying for a recovery with lymes treatment.

[misstraci]

Nicole.... I think it's awesome you have been seeing improvements with the supplements you've been given and the diet changes and toxin elimination!!!! I hope it only continues in the right direction for you. That's neat you were able to see it for yourself. What area do you live? I wonder if any natruopath near me could be of any help. I am almost convinced I have lyme but don't know who to go to.

Thank you everyone for your responses!!! greatly appreciated as always

[issie]

Nicole, I think we will have a lot of ups and downs in the treatment. We are both really new in the treatment phase of this. It's not something that will happen in a short time - but, may take quite awhile to have results. I read of one lady who after 4 years finally got a clean test. But, her doctor required her to have 3 of them before she could stop treatment. My doctor told me that we have to go really slow in the die off and also in the removal of the bio-films from the walls of the veins. If you think about what could happen if there was too much of a die off or the bio-film had a massive release all at once ----there could be a blood clot or something else associated with that. I think we just have to be patient and realize it will take time.

I too am not convinced that this will be the complete solution to my POTS. But, it should help. Since it also addresses autoimmune issues and so much of what we seem to have could be associated with a faulty immune system that will probably be of benefit too.

We are both on totally different diets. So, can't say how the diet you are on vs. the one I'm doing --which will prove to be the most beneficial. But, trying to eliminate all the things that may cause inflammation and/or autoimmune issues should help ---overall. I'm having to be more restricted because of what is found to feed and keep alive the type of protozoa I have. So, that limits me more with my diet. I have to be total vegan and low fat. The attempt is to have only whole, complete foods.

Issie

[GypsySoulNicole]

Issie, Thanks for the encouraging reminder! I knew when I started treatment, I was in for the long haul. I'm just physically and emotionally drained right now! Still pushing through, though. The die off has been harsh, so I'm going slow. It helps to come on here and have people relate.

[Angela]

gypsiesoul, i have had a tough week too. but our symptoms are so similar to ms, and the lowfat vegan diet is proven to expand the lifespan of ms. so that's why i wont give up. hasn't cured my pots....doesn't cure ms....just preventive maintenance.

[issie]

Yes, lots of ups and downs. I've been having a rough time for 2 weeks now. So, maybe it's the season. LOL! Hang In There girls ---we can do this.

Yes, from what I've read about the lowfat, vegan diet seems to be making a big difference with a lot of illnesses. Makes me determined to stick with it.

Issie