After huge relapse LTT for lyme finally positive after years of negative results: My story

[Vojta]

Although I have been diagnosed with Late stage lyme by KDM 1.5 years ago I have always been negative for lyme and I did more than 15 Western Blot, ELISA and PCR tests in over more than 5 years of my illness (IgM ELISA was borderline once and some inconclusive antigens visible on IgG WB once or twice. As usual no one paid attention to it.). I also did LTT tests in Germany which were all negative (0 values) back in 2012. I had always low CD57 though and it went up little bit after antibiotics.

I was taking few combinations of 2 antibiotics for about 8 months with no subjective improvement or negative reaction (no herx). Then I was switched to Samento/Banderol/Cumanda for 7 months with no significant improvement either. But at least I wasn't getting worse permanently. After that I was put on Rocephin for 6 weeks and then Azithromycine for 6 weeks. Followed by 2 months of Minocycline 100mg/1x day I was switched to combination of Clarithromycine, Tetracycline and Plaquenil. I was having more joint pain and brainfog on this combination but nothing severe. When I told KDM that I don't feel better after this he stopped antibiotics completely and next consultation in 3 months!

Two days after I stopped abx I had very unusual brain episode when I had serious neurocognitive impairmant for about a week. I started to have more joint pain and I was generally worse than I was before. After month without abx and period of stress could be involved I experienced something like acute episode of infection in brain with severe sharp joint pain, almost 3 days of constant heart arrhytmia, the worst inflammation was localized in back of my head and around ears. Painful swollen lymph nodes all over. Higher temperature than usual. I suffered from vertigo to the point of almost vomiting. My tinnitus got extremely worse and I actually thought I'm going to die or at least it will leave my nerves damaged. I have never been so sick before with this set of text-book lyme symptoms being so bad. I was worried lyme is spreading wildly through my body so I put myself back on tetracycline and plaquenil from my surplus. My condition stopped getting worse and I stayed stable for another week. I was lucky that new lyme clinic (only one in my country) opened up just 20 mins from my home so I made appointment there immediately and next week I was having conversation with very young doctor who got training in Augsburg clinic. He gave me azithro to add to tetracycline+plaquenil I already had for another 2 weeks and cefuroxim plus azithro (3x week) for next month. They took my blood for new LTT test and CD57.

I got results this week.

Borrelia burgdoferi
Elispot Borrelia burgd. fully antigen + 11 (SI < 2)
Borrelia peptide mix + 5 (SI < 2)
Borrelia LFA-1 < 2 (<2)
Diagnosis Borrelia The Elispot indicate a cellular activity against Borrelia burgdorferi.

CD-57 positive NK-Cells absolute 29 (130-360)
The CD57-cell-count indicate a chronic immune-suppressive situation which may be caused by Borrelia burgdorferi.

Lymphocytes 17 % (25 – 40)


I don't think I got reinfected I haven't had tick bite for at least 3 years. But I got many tick bites since childhood and 2 after I got sick in 2009. I also removed ticks from our dogs though and I used repellent when outside.
So my hypothesis is that abx combination with plaquenil stirred things up and made latent lyme angry and their abrupt discontinuation by KDM and period of stress triggered full-blown lyme party like never before. Does it make sense?

I also began with supplements according to Horowitz book and doctor recomendation which improved my mental concentration significantly on most days in last week and I think I'm able to detox more efficiently now. But I'm very unsure what to do next. Since I switched to cefuroxime instead of tetracycline 3 days ago it's getting worse again (sharp pain, inflammation, disturbed sleep).
It seems that this young lyme doctor is willing to cooperate with me on future treatment plans (although he is pediatrician but treats also adults with lyme). But I don't want to waste money, time and health on other clearly insuficient treatments. That's the reason I think I'm going to stop seeing KDM. Because his treatments weren't according to ILADS guidlines and he lost interest in my case long time ago (my consultations last 2-5 minutes).
This new LLMD told me we could try clindamycine next but now I read in Sam Donta article that it's not effective for late stage lyme.

Should I insist on any specific abx combination? Should I try some IV again (systematiclly and long-term this time)? Any advice?

How much can I trust LTT? I should have taken WB again but I expected everything negative again so I wanted to save some money. Is it possible that something else is causing false positive LTT and low CD57? Or should I be "happy" that I have finally strong evidence of having lyme?


Vojta

 

[msf]

Wow, assuming that you are infected with Lyme, and that you haven't been infected with it since you fell, that is some scary stuff - I am also negative on all the Lyme tests KDM uses so far, including the LTT, but I also had a low CD57 count. I have tested positive for Yersinia, which might account for it (as well as most of my other symptoms) but it seems it is impossible to be sure that you don't have Lyme.

If you had tick bites after you fell ill though, it seems quite likely you were infected (or reinfected) after you fell ill - were these tick bites before or after you had the first round of tests?

 

[msf]

Ah, I see you said you haven't been bitten for 3 years - have you kept dogs since then?

Re: KDM's treatments, they seem to work for some people, but I think the problem with all these chronic bacterial infections is that they are very difficult to treat, so the treatments won't work for everyone. Hopefully one day your GP will be able to give you one pill that gets rid of it, but that seems a long. long way off.

 

[Vojta]

Wow, assuming that you are infected with Lyme, and that you haven't been infected with it since you fell, that is some scary stuff - I am also negative on all the Lyme tests KDM uses so far, including the LTT, but I also had a low CD57 count. I have tested positive for Yersinia, which might account for it (as well as most of my other symptoms) but it seems it is impossible to be sure that you don't have Lyme.

If you had tick bites after you fell ill though, it seems quite likely you were infected (or reinfected) after you fell ill - were these tick bites before or after you had the first round of tests?

I had tick bites in 8/2011 and 6/2012 and all tests were done before and after, usually 2 times a year. First LTT was done in 9/2012. I had no new symptoms and my condition was same as before. I had many tick bites before I got sick so statistically speaking it's almost certain that I had contact with borrelia in my life before I got sick. I never had EM. Our dogs get tick bites regulary though but I examine myself for ticks almost all the time.

I had elevated IgG for anaplasma back in 2012 and since then I took long courses of doxy,mino and tetracyclines. And this year after 2 months of triple combination I had IgG for anaplasma even higher than before. Anaplasma isn't supposed to survive treatments I took and isn't supposed to evade sophistically immune system like borrelia. So doctors think it's probably cross-rection and overstimulated immune system.

I had low CD57 from the beginning so it could suggest that lyme was culprit for the onset of illness.
2/2011 --- 60
11/2012 -- 58
3/2013 --- 35
5/2013 --- 75
6/2015 --- 29

Otherwise I was tested by almost all commercially availible tests possible for infections. I was always positive only for EBV serology but I felt same even when they were down. And result for some obscure PCR sequencing from blood done at the University in Liege for Bartonella was "grey zone". KDM interpreted it that there may be some chunks of DNA which could be from some uncommon bartonella species. But no one really knows what it means.

It's not like I have any totally new symptoms now (maybe except persistent joint pain in thumbs). Most of them were consistent with lyme from the begining but no one was excited to treat me for it becasue multiple negative test and no herx when on abx. It's more like those symptomes just exploded out of proportion.

So I think it could be possible that my immune system was stimulated and supressed by lyme even before I got sick and it was hidden well enough to avoid atbx and immune system and detection by tests. Now when it spread through body immune system recognized it.

 

[msf]

Sounds like your medical history is complicated, but there does seem to be quite a lot of evidence that ticks have something to do with your illness - I guess the thing you are worried about is whether the infections are still active. Did you have the LTT done, or the new Lymespot? Apparently this can differentiate between active infection and other disease states.

 

[anciendaze]

Perhaps you have heard about Dr. Burrascano's experience in treating himself. He went from a deplorable state to close to health repeatedly. When he stopped antibiotics, he suffered a prolonged relapse. He finally decided he was going to let himself fall back to the bottom before the next round of treatment. This happened three times before he fully recovered.

Why should this work? Best guess is that his immune system finally caught on to which pathogen was responsible after it emerged from hiding repeatedly. Other patients have recovered in much the same way.

Those antibodies in the test depend on immune recognition of the pathogen. If the immune system is confused and doesn't know what is going on you will not test positive using a test that depends on antibodies.

 

[duncan]

Yes, anciendaze, and which also brings up the observation that Zhang's three rounds of pulsing perhaps aren't all that new afterall...although the cocktail is probably different (I doubt Burrascano used daptomyecin or whatever.)

 

[Daffodil]

thats my story. all tests negative for years, then suddenly, positive on LTT. 22 yrs sick..now improving with KDM's antibiotic regimen. never even had a tick bite that i recall..never had pets..barely went outside..never lived in lyme area.

took almost 3 yrs to start noticing any improvement at all.

KDM is too busy..that is the problem...but he is an excellent doc

 

[darroo]

I enjoyed my visit in brussels. I like KDM style

 

[RML]

Hi @Vojta

I have heard great things about that new clinic and that young doc. I know someone who goes there also.

I am glad they found you some answers finally, even if a positive Ltt is not great news for you, or cause more questions!

 

[Antares in NYC]

Unfortunately, your story is common due to the awful diagnostic methods currently employed officially to detect Lyme exposure. My story shares the same frustrations:

• In the late 90s I had the tick bite with a very prominent bulls-eye rash, and no doctor in Lyme-endemic Massachusetts could possibly figure out what it was.
  
  
• Two months after the rash disappeared I fell extremely ill. No doctor in Lyme-endemic Massachusetts could think that my symptoms had anything to do with Lyme.
  
  After doing some research, I learned about Lyme and how closely it matched all my symptoms. My doctors performed a couple of Elisa tests that came out negative, and called it a day. "We are puzzled!" and "you are a mystery" quickly turned into "maybe you are depressed", and "have you thought this could be psychosomatic?"
  
  
• About a year and a half into this ordeal I reached out to a top Lyme specialist --back when the IDSA still had not turned Lyme specialists into some sort of rogue outlawed practitioners. He ordered a Western Blot that came positive for Lyme. I was treated with Doxy and Plaquenil, but never got 100% better (75% at most).
  
  
• In 2005, I was having a battery of routine tests by a different doctor in a different country (for an unrelated problem). This doctor told me that I was positive for borreliosis via Western Blot and urged me to follow up on that.
  
  
• In recent years, as my health declined severely, I had a number of PCR Lyme tests that always came out negative. Last November I had an advanced LTT test, for peace of mind, and the test came out positive for Lyme AND CDC positive as well.

If anything, this is a testament on how awful, inconsistent and faulty the current Lyme tests are. No wonder other countries that are starting to deal with Lyme bypass the bullsh#t Elisa test and use LTT directly.

 

[darroo]

i know eh its crazy. they need to update all the doctors some don`t want to learn anymore just prescribe pills

 

[Vojta]

So after 2 months of antibiotics my Borrelia-Blot done at Infectolab in Augsburg came back negative for all bands except IgG p41 and IgM p41 borderline. This result is consistent with my previous WB tests where I had usually also only p41. I know it's non-specific antibody for flagellin. I feel little disappointed.. Now I'm wondering if my LTT could be false positive or if borrelia is in stealth mode.

I switched to minocyclin 2x100mg, plaquenil 2x200mg, azithromycin 500mg/(5 days in week) last sunday and I'm not herxing. I normally don't. But my gut is having hard time. I will also add some metronidazol pulses later. I'm worried about making leaky gut worse. I'm also doing VSL3 probiotics, liposomal glutathion, NAC and other supplements recommended for lyme treatment. I tried LDN again but I had to stop after 3 days. I'm not tolerating even 0,2 mg.

Now I'm not sure if I will continue with atbx after next 2 months on this protocol if there is no sign of improvement. I feel so much worse after I returned from appointment with KDM 2 weeks ago (still waiting for plan from him. Current abx protocol is from my LLMD). My inflammation in brain is horrible again and only thing which seems to be helping little is 0,75mg of bromazepam. I guess it has some anti-inflammatory effect on activated microglia (some studies suggest GABA receptors on them regulate release of cytokines).

 

[Helen]

Now I'm wondering if my LTT could be false positive or if borrelia is in stealth mode.

When I bought tests privately from Infectolabs Dr. *rmin Schw*rzb*ch (*=a) replied to e-mails and gave his opinion on the results more thourough than he had done in the written lab report. Maybe you could get some more information about his view on yours too (from his new lab) before you get the report from KDM.