10 years of lyme.. where I am now

Good afternoon lyme community..

I found and have been using this site and community for the last two years (which has helped immensely and given me some peace of mind that I'm not alone in a lot of what I go through) but have never posted anything about my lyme story. Having the day off, I thought now would be a good time to do so.

[2006 When it all started]

In 2006 I became very sick, having flu like symptoms that just wouldn't go away. Throwing up, having fever and chills, and having unbelievable headaches that wouldn't go away unless I would go to sleep. This lasted about 3 weeks until it got so bad that I was hospitalized where immediately they thought I had meningitis and performed a spinal tap among some other tested (none of which for lyme). I was in the hospital for 3 days being given IV fluids when I started to become coherent again and started feeling a little better. All of the tests they did came back negative for meningitis and wrote it off as some weird "bug". For the weeks to follow I would still get the unbelievable headaches (migraines run in my family and I have had them before this, but this was something else, they were so bad I could hardly speak when I would get them and would have to instantly go to sleep to get rid of them)

[The symptoms, tests, and years to follow]

I had always been an active person, playing three sports a year, hunting, fishing, camping, and just liking to be outside. I live in western Wisconsin where there is a lot to do outside. For the next year to follow after being hospitalized I pretty much went back to life as usual, but started to notice weird things that I had never had before. I started to notice a tremor, I would shake when holding a pencil and subdal stuff like that. I also started getting a rash on my face only where I had facial hair, around my chin, and in my eyebrows. The rash would come and go in intervals about every two weeks. Then, I started to notice my heart beat. It would beat really fast and then one beat later start beating very slowly and go back and forth. This was the most concerning at the time so I went in to get it all checked out. The neurologist diagnosed me with an essential tremor that had just popped up out of the blue. The dermatologist gave me some cream for the rash (that did nothing to it) And I had an EKG done for my heart (that came back normal) and was put on a one month portable heart monitor (which also came back normal.)

For the next 3 to 4 years I struggled with my sanity feeling more and more of these new things happening and all of the tests coming back normal and there's nothing wrong. I started to get severe anxiety thinking that there is something very wrong (cancer, some disease, where your mind jumps to the worst) and they're just not catching it. In 2009 my family doctor was seeing me for anxiety and another symptom when he had the idea to check me for lyme. This was the very first time this had ever even been brought up. It came back positive and we were like FINALLY now we can treat this and move on. He gave me a two week doxy script and said I should start feeling better by then. Being naive and knowing very little about lyme I thought the same. I had always thought lyme disease was no big deal, some of my friends and family had had it and took some antibiotics and they were fine now. So, after taking the doxy for 2 weeks my symptoms didn't really seem to change but my anxiety went down because I thought at least we found what it is and Im going to be better soon. And again I went back to life as usual and just dealing with the tolerable symptoms and anxiety.

[A new job and sharp turn for the worse]

In 2012 I got a new job where I was traveling all over the country for work. For the first 10 months I was in Feyetteville, North Carolina. When I wasn't working I was golfing, working out, and trying to stay active. about my 5th month there I found a tick burried in me. I had found ticks on be before a few times and thinking I already had lyme disease before, what more could it do, so I removed it and didnt think much of it. But by the 8th or 9th month there I started noticing 2 BIG new symptoms, a weird mental block and brain fogginess, and an unrelenting felling of being weak and fatigued. (To this day I'm still not sure if that tick had anything to do with the new symptoms or if they would have appeared then anyway) But with these new symptoms came the anxiety and the "Im Dying" feeling again. So after doing some research online I found the symptoms and many stories of chronic lyme disease and all of the controversy that comes with that name. I called my family doctor again and had him prescribe me another two weeks of doxy (which did nothing) Then a family friend told my mom about a doctor in Idaho that treats chronic lyme patients and after reading his website and all of the testimonials I booked an appointment.

[My introduction to alternative and herbal medicine]

It was now 2014 and I was not really sure what to expect when I got to Idaho. I kept an open mind hoped for the best and just kept thinking of the testimonials from the people he's helped with symptoms similar to mine. My first appt he took out some magnets and a book case full of vials. I was unaware at the time that this was a magnet therapy and muscle testing approach. He started telling me I had bartonella, babesia, and borrelia along with other co-infections that I had no idea existed at the time. He gave me a 3 month herbal supplement plan and sent me on my way say I would feel bad at first (herx) but then feel much better by 2 months in. I returned to a pretty hectic work schedule and stayed to his plan the best I could. In 3 months I felt no different and went back for a follow up appt. My second time the he said he missed a couple co-infections and protomyxzoa and put me on another supplement plan and said I would be feeling better shortly (which I didn't)

In 2015, my symptoms got worse again especially in the gut and yet again went to thinking its something other than lyme. I went back to the hospital and had a endoscopy, colonoscopy, and ct scan done. All came back , you guessed it, normal.

My grandma found a different herbal doctor in Chicago who had helped her in the past with sinus problems and said he also treats patients similar to what I have. After visiting with him I found out he also used the muscle testing technique but not the magnets. I actually felt much more confident with him and scheduled to see him every 2 weeks. Every time I would see him he would test if the herbal supplements were still having an effect on the different infections and continually change them up to keep the infections guessing. I liked this approach and I actually think it helped me for awhile. But after 6 months and no real significant changes I decided to look into see a LLMD (right around the time I found this site)

We found a llmd about 45 mins from my house that had great reviews and specialized in the use of IV abx for chronic patients. After seeing him for the first time he thought I probably had bart and babs along with multiple co-infections. He ordered a western blot that came back negative. For that reason my insurance wouldn't cover the IV treatment so instead we did a Rocephin shot once a day for 21 days to see if there would be any changes in symptoms. After 21 days I noticed no significant changes or herx. We attempted several other over the next year but never really noticed any differences.

[Where I am Now]

about 4 months ago I started seeing another doctor in Chicago. He has started me on a new regimen of herbal supplements along with a detox cleanse every 3 weeks and the use of a Dr. Clark Varizapper every night (rotating various chips daily). I have been using the zapper every day for the last almost 4 months now and sticking to his supplement plan and diet the very best I can. I am also looking into starting some of the Beyond Balance products and having him look into them.

I quit my job about 9 months ago and am now self-employed due to not being able to work a fixed schedule.

My current symptoms are as follows:
-unrelenting fatigue
-brain fog/trouble reading/finding words to say
-tremor/ muscle spasms throughout body
-facial rashes/painful gums/teeth
-stomach pressure and discomfort/itching rectum after bowel movement
-various numbness, hot/cold, and tingling sensations throughout body
-migraine headaches
-constantly freezing cold hands and feet
-spotty soars and lumps all over body
-pain in groin and testicles
-cloudy/dark urine, and losing the ability to hold urine, always feel like I have to go and then go very little
-unbelievable hangovers after a night of drinking, had to give up drinking because of it (maybe not a bad thing)

And just in the last 6 months I have been having many problems with my eyes and ears. I started noticing blind spots when I roll my eyes to the far left and right. Also many eye flashes and floaters. Its hard to see the floaters when Im inside or in a low lit area, but when Im outside and look at the sky or a light colored wall I see them plain as day. The little squiggly lines. And as for my ears, they started popping constantly and ringing really bad. So much so that I have to have the tv cranked just to fall asleep.

Im not really sure what I am expecting to find by writing this today, if nothing other than the satisfaction of getting it out in the open. I would be very interested and would appreciate any and all feedback and thoughts.
I did also have a couple questions that anyone feel free giving their insight.

As I've read many posts on this site it seems to me some people are being specifically treated piece by piece for bart, then they'll move on to babs and so on. That has never been the case or an option for me. How would you could about targeting specific areas? With most of my symptoms being cognitive, it seems I would like bart to be my primary focus.

Also, some people are diagnosed in a certain phase or stage of lyme. What test or diagnosis is done for this? Or is it left to a llmd's discretion?

Again, thank you for reading and any insight or comments will be greatly appreciated!

The only significance of a stage of infection is if there has been particular organ damage done from long term infections. Which you certainly have had. The body can generally repair most of itself, depending, once the infections are gone.

Some of the Western Blot bands that show up are interpreted as recent or chronic (old), But none of the tests are close to absolute. If you still have symptoms, you still have active infection.

IgeneX labs have a more detailed system of band testing, but even they miss positives. If I could, I'd order the DNA connexions test which looks for bacterial, etc., dna in your urine.

It could be only bits of dead organisms it's testing, but there you are with symptoms still, which means more is definitely alive in you.

Some Drs. like to pretend we're having "ghost symptom" carryover from the previous infection, and refer to chronic lyme as a "syndrome".

Some of your symptoms sound like you've developed Candida, or a strong yeast overgrowth. Have you looked into that and/or treated for it? It can get in the way of your healing the other infections.

You'll find lots of discussions on here about tremors, shakes, vibrations. They're all described slightly different. I find this to start kicking in when I'm even just beginning to become stressed either physically or mentally, or both.

Hi Wiscolyme,

Thanks for posting and sharing your Lyme story with us. You have been through so much and I'm am sorry for that. The light that I do see from reading your experience, is that you are a survivor. You are strong. You have not given up...and now you are not alone.

Members here do understand, and not only is there an unbelievable wealth of knowledge available here, but when members like yourself share their stories about what has worked or not worked...or what symptoms we have, it has the potential to reach out and possibly help another person suffering with Lyme and Co. So I just want to say how important sharing your story is. Thanks.

I agree with your instincts about attacking the Bartonella. It would be good to go after the symptoms that are having the most impact on your quality of life. I have started Buhner's Bartonella herbal protocol and I believe it's starting to make a difference. (from his Healing Lyme co infections Book).

Even if you and llmd choose to use other protocols this book has very good information on Bartonella. Buhner also has additional protocols geared towards the specific symptoms of Bart.

Well I wish you the best and if you have more questions please post. Take care, sincerely, Jo

Thank you all for replying!

julymorning - Thanks for the info, I do check "New to Lyme ..Start Here" quite often and where I somewhat recently learned how important detoxing is. And I am going to look into the IgeneX lab tests.

tickbite - I have not used Mepron, TindaMax, or Rifampin. No doctor or physician that I have seen ever mentioned it to me or gave it as an option. I am unfamiliar with what they are honestly. I will look into them and ask if it could be an option.

Girlie - Thanks for the info! I was just curious being Ive seen some people say they were in a certain phase of lyme and I had never heard of that

goshawk - Thanks for the kind words. I have heard of Buhner's Bartonella herbal protocol. I am definitely going to look into it more and am going to order Healing Lyme co infections book.

Has anyone here had experience with Beyond Balance products? I am looking at ordering Bab1, Bar1, and the Tox-ease GL. Has anyone used them or know of anyone who has?

Thanks

texaslime - Yes that is what happened.. Ive actually had 3 w blots and only the first one came back positive.

wiscolyme said...
texaslime - Yes that is what happened.. Ive actually had 3 w blots and only the first one came back positive.

This is not as uncommon as one would think, actually. A positive test depends on having a well functioning immune system. As the infection continues to worsen, the immune function falls even lower, and is less able to produce those all important antibodies.

Another thing that can happen is for the bands that are showing a reaction to change. This is the immune system trying to attack the bacteria, but not being able to conquer the bacteria to put you into remission.

This is why we fight for better tests - the tests that we have now either rely on seeing the bacteria (PCR) or rely on the immune function to be high enough to produce those antibodies - even though we are infected with a bacteria that lowers our immune function so that we can't test positive.

This is why states are starting to require doctors of all types to - by law- tell a person that has a negative Lyme test that it doesn't mean they don't have Lyme.

magoo2 - Thanks for the info. I am unfamiliar with what a biological dds does or how they treat dental symptoms. Have you seen one? If so, what were some of their treatment options for you?

Thanks for sharing. Its good to hear others stories especially after having spent SO many years being told the pain, fatigue, brin fog, mood disorder, etc is ALL CAUSED by stress that I brought on myself.

Pirouette - Thank you so much for the time and info! There is no doubt that my immune system is compromised and that some of my symptoms show signs of candida and yeast overgrowth.

What I'm currently taking: daily
- (Klaire Ther-Boitic) Probiotic - 100 billion unit
- (Solaray) Capryl - 4 caps
- (The Vitamin Shoppe) Yeast Fend - 2 caps
- (Natural Factors) Vitamin D - 4000 IU
- (Food Co-op) B complex - 1 cap
- (Food Co-op) Vitamin C - 4000 mg
- (Solaray) Cascara - 3 caps
- (Solaray) Kelp - 4 caps
- (Food Co-op) Lecithin - 1200 mg
- (Solaray) Zinc - 1 cap
- (Sundown Naturals) Fish Oil - 3000 mg
- (Solaray) Multi Vita Mega Mineral - 1 cap
- Also doing Dr. Clarke Varizapper every night (changing between liver, fungal, and kidney chips every night as of now.)

For detoxing I am taking: epsom salt baths, ionizing foot baths, dry skin brushing, and I was doing infrared sauna sessions for two months but have since stopped about 3 weeks ago.

Let me know what you think of this treatment plan..

Thanks!

Hi wiscolyme -

Antimicrobials aside, your protocol is truthfully really very good. But I don't think it's enough.

Again, even if it were enough, if you have GI damage, you're not absorbing it all through your mucosal lining and therefore, it's not working as it should.

Also, existing yeast/fungal issues and certainly issues that have gone undressed for awhile, as yours probably have, are VERY difficult to resolve for many people w/out the hard-hitting anti fungal medications. When people seem to have GI distress and damage, I recommend nipping this in the bud hard and fast. Time is of the essence when healing the gut might hold up a more effective protocol, as it takes awhile to heal the gut.

Please read more about this in the thread I posted about above. And then we can respond to more focused questions if you have them to help you customize your approach.

Your detoxing also looks excellent, particularly when/if you re-introduce sauna. There are a few more things to add to your protocol if you go back on antimicrobials (herbs or abx) and antifungals to:

- binder for the gut (critical w/ anti fungal tx) - bentonite clay, activated charcoal, cholestyramine
- protect liver - milk thistle seed and/or burdock root
- anti-inflammatory - japanese knotweed, turmeric
- brain detox and support - Nutrimedix pinella, bur bur, huperzine

Hope this is helpful - if not, continue asking questions!

-p