What Comes Next?

[the_phscale]

Alright squad, reaching out once again to try and get some insight into the medical mystery that is my life. A recap: onset of symptoms in April 2016 after several viral illnesses in a row (flu, cold, bad cold, etc.) Spent about a year with intense fatigue, joint pain, day/night reversal, tremors, memory problems, vertigo, tachycardia, etc etc. Found an LLMD in April 2017 who diagnosed me based on IgeneX IgG and IgM bands. He believed that bartonella was also at work as well as...something else that we weren't quite sure which co-infection it was.

I spent a year on bicillin and azithromycin and saw very good results. All of my symptoms except the fatigue faded, and even that was much lessened. About 6 months ago I switched the antibiotics to rifampin and minocycline. Things stayed pretty much the same, with a gentle upward trend. I moved cities, insurance plans, and practitioners, and am now seeing a rheum. He tested me with the in-house Western Blot, and we saw that a few bands were no longer present! We decided to take me entirely off of the rifampin and to halve the dose of minocyline to see what would happen. At this time, he also raised some interest in my double-jointedness (before you ask, no rashes).

What happened was I've started getting sicker again. Much more fatigued, joint pain flared and then settled back down, head is fuzzy with brain fog and word recall seems harder than it was a month ago. Functionality, on the whole, has definitely dropped, and my heart rate increased by 10 bpm on average. An echo revealed nothing out of the ordinary.

My doc and I have to discuss what comes next for me, and I just don't know what that is. Clearly the antibiotics were doing something, but I can't stay on them for my whole life, and 18 months wasn't enough to kill the colonies completely. I haven't had any re-testing for bartonella or other coinfections. Is this still Lyme? How do I eradicate it for good? Is something else at work here, like a mast cell disorder or sjogrens (maternal grandma has it)? I don't know where to go from here, and I've always been proactive about working with my doctors as a team. If I don't give him something to go on I'm worried that he'll just waffle for long enough that my functionality continues to decrease, and I once again lose the ability to work part-time and live like a normal 22 year old.

 

[wholepartthings]

What about your immune system, count of NK cells?
Has there been any improvement in these, especially NK cells?
Otherwise, I guess the immunodeficiency is still there (if there was one.).

 

[Belbyr]

Lyme was always a mystery to me as well. I was never CDC positive for it but Igenex said I was back in 2008. I did 3+ years of daily IV, Oral, and injected antibiotics along with all the usual heparin, supplements, hormones... I had my ups and downs. Sometimes I would feel like I was getting better, then sometimes go through really hard bouts that lasted weeks to months.

In the end, I said 'eh I probably don't have lyme'. and moved on. I never had any of the classic lyme symptoms like rash, joint pain, fever, numbness, or arthritis... I just have bad GI symptoms, fatigue, muscle tension, poor sleep, and headache/brain fog

 

[the_phscale]

@wholepartthings Gosh, I’ve never even heard of NK cells. A quick google got me a lot of results about fertility treatments? What blood test would be used for NK cells? My wbc is on the low side of normal, but my lymphocytes keep coming back high, and my neutrophils low.

@Belbyr so what did you do? Do you just live with the symptoms? right now I’m 22 and my symptoms can render me almost completely nonfunctional. I don’t know that right now I can accept an outcome that requires me living like this forever (no offense or hurt meant for you and the things you’ve found that work for you, I’m just trying to get all the answers I can).

 

[Belbyr]

I've been sick for 13 years now. I go through good and bad phases, these phases can last 3-6 months at a time. I have found low dose elavil seems to help my gut by about 30%, epsom salt baths and light workouts help my muscles a little, and I try to do things to take my mind off. I recently was put on 3 different antibiotics for 3 months due to what doctors thought was an infection, turns out I pinched a nerve and need a block instead... These antibiotics set me back and put my gut in really bad shape. So I have been out of work for the last 2 months but was feeling pretty bad before that.

I keep up with all the research going on to give me hope, which there is more hope now than ever! It seems to keep growing as well. I'm currently waiting to see Dr. Nancy Klimas, 4-5 more months to wait. I believe she will be able to officially diagnose me and tell me which subgroup I may be in. I hear she can get most of her patients back to functional again. I hope her cure works in the clinical trials she is doing on humans now, after it worked on mice.

I was treated at a lyme clinic for over 2 years and mets lots of people from all over the country that were said to have had Lyme disease. The funny thing was, whenever someone came in with a positive CDC test, they were cured and gone within 1-3 months and never heard from again. Many of us were positive by Igenex and were there forever, later on people started discovering they were sick with something else. A couple actually had MS, one was bipolar, one had an issue with copper, one had POTS, another had ALS and died from it, etc.

The clinic ended up getting shut down because the people running it were evading taxes, were found to be giving false diagnosis, and people were getting billed for things they never received. I left right before they got raided by the FBI.

 

[5vforest]

Hi the_phscale,

I'm in a very similar situation to you, so I feel qualified to answer some of your questions. I'm in my mid-twenties, have had a previous CFS diagnosis, treated (and recovered) from Lyme and Babesia, and then relapsed and am currently treating again.

I'm gonna try my best to write a detailed post, but since I'm sick right now as well, it's likely I might leave something out. I would highly recommend buying one of the many books on Lyme Disease and reading up on it yourself. I would recommend Dr. Richard Horowitz's new book or Stephen Buhner's Healing Lyme.

I vehemently think that you should continue treating Lyme disease & co-infections, and disagree with many of things that Belbyr has said.

Here's how I read your history:

• April 2016: Viral onset of symptoms
• April 2017: Diagnosed with Lyme & co-infections, started bicillin and azithromycin, saw major improvement in symtpoms
• October 2017(?): Switched to rifampin and minocycline, continued improvement
• April 2018(?): Switched doctors, stopped rifampin and halfed the dose of minocycline. Symptoms started to worsen again

Feel free to correct me if any of this is wrong. But if you just read this timeline... it seems ridiculous to suggest that you stop treating for Lyme!

It's extremely common to relapse after discontinuing antibiotics. In fact, many Lyme specialists will do a "test" where they cease antibiotic treatment to see how the patient responds. But if the patient starts getting worse, they immediately start antibiotics again.

Is your current doctor knowledgable with regards to Lyme and tick-bourne illnesses? If not, I would go back to one who is. In fact, I can't quite understand why you stopped seeing the first doctor. It sounds like the first doctor was successful in treating you and achieving improvement of many of your symptoms?

A few other points:

> He tested me with the in-house Western Blot, and we saw that a few bands were no longer present

Not all Western Blots are the same. They very greatly. Are you saying that the bands were no longer present, when compared to the previous result from iGeneX? This means next to nothing. Even if the results were from the same lab, you have to remember that the Western Blot is an indirect test -- it looks for antibodies to Borrelia, and not the bacteria itself. I would be hesitant to derive much clinical value from bands appearing or disappearing.

> Clearly the antibiotics were doing something, but I can't stay on them for my whole life, and 18 months wasn't enough to kill the colonies completely.

Well actually, there are people who stay on antibiotics for far longer than you did. (When compared to the alternative, it doesn't always look like such a bad option.) But it's also important to note that even though you did 18 months of antibiotics, you might not have done the right antibiotics or the right dose or even the right order in order to completely eradicate the bacteria. (There's a lot of research about bacterial pleomorphism that you can look up.) Also, people use herbal treatments as a long-term maintenance strategy instead of staying on antibiotics.

> Is something else at work here, like a mast cell disorder or sjogrens (maternal grandma has it)?

When dealing with chronic symptoms like yours, you should definitely get a thorough workup to rule out any other diagnosable diseases. Any good Lyme doctor will do this before jumping to conclusions. (Although yes, there are many that will be way too eager to diagnose you with Lyme disease.) But you already improved with Lyme treatment, I don't think you want to add another diagnosis to your list, especially one that is hard to treat.

> I don't know where to go from here, and I've always been proactive about working with my doctors as a team.

I know what this is like! But to be honest, it sounds like your current doctor might not be the right one for you. Remember that part of your job is choosing your doctors as well.

And finally, some responses to Belbyr... actually never mind, I'm not going to reply directly. It sounds like they had a bad experience at a Lyme-specific clinic, and are extrapolating that experience to an unreasonable extent. Belbyr, that place sounds shitty, and I'm sorry you had that experience. But in my opinion, it's extremely obvious that the OP should continue treating for Lyme disease.


I hope this helps.

Best,
5vforest

 

[Tammy]

If it were me I wouldn't take one more dose of antibiotics. You said viral onset in 2016. That's what I would focus on.

 

[wholepartthings]

@wholepartthings Gosh, I’ve never even heard of NK cells. A quick google got me a lot of results about fertility treatments? What blood test would be used for NK cells? My wbc is on the low side of normal, but my lymphocytes keep coming back high, and my neutrophils low.

You need something like a lymphocyte differentiation to see the different cells, some are to high and CD57+ and/or CD56+ are often very very low.
(function and/or count)

Also do a cytokine profile! Things like Interleukin Receptor 2.

Then test for viruses.

 

[Belbyr]

Watch this, it's more complicated than once thought. Anything from Brian Fallon, I trust.

 

[JES]

But you already improved with Lyme treatment, I don't think you want to add another diagnosis to your list, especially one that is hard to treat.

A diagnosis shouldn't be made based on what is easy or hard to treat, but based on what the evidence suggests. The fact that improvement was achieved on antibiotics cannot serve as solid evidence for Lyme disease, because as far as I know, all antibiotics are broad spectrum and none is Lyme specific. In ME/CFS, a shift in gut bacteria and microbiome has been observed and this includes many bacterial species. So theoretically the improvement from antibiotics could have come from elimination of any pathogenic bacteria. Some antibiotics are anti-inflammatory as well, which could be another reason for improvement.

IMO there is little reason to suspect Lyme specifically is what is driving your symptoms, at least little reason above any other intra- or extracellular pathogen that ME/CFS patients typically are infected with.

 

[sunshine44]

the story of so many of our lives, viral and bacterial issues here as well, cdc positive lyme... get better on antibiotics but then had allergic reactions and so frustrating.

 

[Mel9]

Hi the_phscale,

I'm in a very similar situation to you, so I feel qualified to answer some of your questions. I'm in my mid-twenties, have had a previous CFS diagnosis, treated (and recovered) from Lyme and Babesia, and then relapsed and am currently treating again.

I'm gonna try my best to write a detailed post, but since I'm sick right now as well, it's likely I might leave something out. I would highly recommend buying one of the many books on Lyme Disease and reading up on it yourself. I would recommend Dr. Richard Horowitz's new book or Stephen Buhner's Healing Lyme.

I vehemently think that you should continue treating Lyme disease & co-infections, and disagree with many of things that Belbyr has said.

Here's how I read your history:

• April 2016: Viral onset of symptoms
• April 2017: Diagnosed with Lyme & co-infections, started bicillin and azithromycin, saw major improvement in symtpoms
• October 2017(?): Switched to rifampin and minocycline, continued improvement
• April 2018(?): Switched doctors, stopped rifampin and halfed the dose of minocycline. Symptoms started to worsen again

Feel free to correct me if any of this is wrong. But if you just read this timeline... it seems ridiculous to suggest that you stop treating for Lyme!

It's extremely common to relapse after discontinuing antibiotics. In fact, many Lyme specialists will do a "test" where they cease antibiotic treatment to see how the patient responds. But if the patient starts getting worse, they immediately start antibiotics again.

Is your current doctor knowledgable with regards to Lyme and tick-bourne illnesses? If not, I would go back to one who is. In fact, I can't quite understand why you stopped seeing the first doctor. It sounds like the first doctor was successful in treating you and achieving improvement of many of your symptoms?

A few other points:

> He tested me with the in-house Western Blot, and we saw that a few bands were no longer present

Not all Western Blots are the same. They very greatly. Are you saying that the bands were no longer present, when compared to the previous result from iGeneX? This means next to nothing. Even if the results were from the same lab, you have to remember that the Western Blot is an indirect test -- it looks for antibodies to Borrelia, and not the bacteria itself. I would be hesitant to derive much clinical value from bands appearing or disappearing.

> Clearly the antibiotics were doing something, but I can't stay on them for my whole life, and 18 months wasn't enough to kill the colonies completely.

Well actually, there are people who stay on antibiotics for far longer than you did. (When compared to the alternative, it doesn't always look like such a bad option.) But it's also important to note that even though you did 18 months of antibiotics, you might not have done the right antibiotics or the right dose or even the right order in order to completely eradicate the bacteria. (There's a lot of research about bacterial pleomorphism that you can look up.) Also, people use herbal treatments as a long-term maintenance strategy instead of staying on antibiotics.

> Is something else at work here, like a mast cell disorder or sjogrens (maternal grandma has it)?

When dealing with chronic symptoms like yours, you should definitely get a thorough workup to rule out any other diagnosable diseases. Any good Lyme doctor will do this before jumping to conclusions. (Although yes, there are many that will be way too eager to diagnose you with Lyme disease.) But you already improved with Lyme treatment, I don't think you want to add another diagnosis to your list, especially one that is hard to treat.

> I don't know where to go from here, and I've always been proactive about working with my doctors as a team.

I know what this is like! But to be honest, it sounds like your current doctor might not be the right one for you. Remember that part of your job is choosing your doctors as well.

And finally, some responses to Belbyr... actually never mind, I'm not going to reply directly. It sounds like they had a bad experience at a Lyme-specific clinic, and are extrapolating that experience to an unreasonable extent. Belbyr, that place sounds shitty, and I'm sorry you had that experience. But in my opinion, it's extremely obvious that the OP should continue treating for Lyme disease.


I hope this helps.

Best,
5vforest

In my case, I have a Borrelia infection that is under control as long as I keep taking my antibiotics.

Every year or so I stop taking them just as a check. I become sick after around 4 days, so go back on the antibiotics. My body has adjusted to them and I have no digestion problems.

Similarly to those with on-going viral infection, I have developed ME and POTS and was bed bound until,two weeks ago, my LLD started me on Mestinon which gives me energy for around four hours (i take 30 mg every four hours).

I now have a reasonable, mostly housebound, life as long as I don’t overdo physical activity.

I have a strong feeling I will have these diseases for the rest of my life but am still happy because I am no longer bedbound.

I would be in a lot of trouble without my meds though.

 

[taniaaust1]

@wholepartthings My wbc is on the low side of normal, but my lymphocytes keep coming back high, and my neutrophils low.

Low neutrophils can indicate a chronic infection.

Work to get through to the doctor that without these you ARE getting worst so he either needs to suggest something else to you or you need to get back onto them. If something is helping you, dont stop it...it does not matter how long one is on something as long as it is not causing actual issues and as long as its helping.

 

[5vforest]

If it were me I wouldn't take one more dose of antibiotics. You said viral onset in 2016. That's what I would focus on.

Two possibilities here: 1) one of the "viral onsets" could have actually been acute Lyme disease symptoms, which presents as a flu-like illness, 2) a virus could have triggered a latent bacterial infection.

IMO there is little reason to suspect Lyme specifically is what is driving your symptoms, at least little reason above any other intra- or extracellular pathogen that ME/CFS patients typically are infected with.

...Besides the OP's positive test results, you mean?

Sheesh.

 

[manasi12]

Try to find immunologist and rule out autoimmune disorders (given the family history of Sjogrens ). Try to look if there is any problem with WBC ?

 

[olegsel]

An antibiotic cannot be associated only with a bacterial infection. The antibiotic has a multifaceted effect on the immune, nerologic processes in our body.
Reduced activation of microglia by minocycline.
Immunomodulation and deaggregation of toxic proteins in the central nervous system rifamycin
....

https://www.ncbi.nlm.nih.gov/pubmed/11478935
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4650866/
https://www.ncbi.nlm.nih.gov/pubmed/21555117
https://news.ucsc.edu/2004/11/600.html

Rifampin Augments the Effects of Oxymatrine/Equilibrant (oxm/equi) In Patients with Myalgic Encephalomyelitis/CFS

John K. Chia, M.D.
Andrew Chia. EV Med Research

Objectives: Chronic enterovirus infection has been implicated in the immunopathogenesis of ME/CFS. Previously, we demonstrated the benefit of oxm/equi, an herbal immune booster, in 50% of ME/CFS patients. Concomitant administration of rifampin in one patient resulted in flu-like symptoms and ulceration of infected pharyngeal tissues, which was followed by symptomatic improvement and decrease of chronically elevated Coxsackievirus B3, 4 antibodies. We evaluated the adjunctive effect of rifampin in patients who were taking oxm/equi.
Results: 31/46 (67%) patients developed significant flu-like symptoms lasting few days during or after the one-week rifampin treatment. 23/33 (70%) of responders and 0/13 non-responders had additional improvement of fatigue and other symptoms ( p <0.01, X2 test). 21/33 (64%) responders who had taken oxm/equi ≥ 1-2 years were able to discontinue the herbs within weeks or months of flu-like symptoms and remained in remission. 0/45 ME/CFS patients on oxm/equi alone and 0/45 MRSA-infected patients on doxycycline and rifampin developed flu-like symptoms. Laboratory studies showed no significant changes, and gene expression study of 12 cytokines demonstrated increase of TNF-α and IL-1α,β mRNA while on rifampin and oxm/equi.
Conclusion: Flu-like symptoms were commonly observed in patients who took oxm/equi concomitantly with rifampin, as compared to controls. Subsequent symptomatic improvement was observed in > 60% of oxm/equi responders. Short course of rifampin may be beneficial in ME/CFS patients who are responding to oxm/equi. The possible mechanism of enhanced immune response will be discussed and further investigated.

http://web.archive.org/web/20111119034131/http://iacfsme.org/LinkClick.aspx?fileticket=EFIrm+uCnkM=&tabid=142
page 22

 

[the_phscale]

I keep up with all the research going on to give me hope, which there is more hope now than ever! It seems to keep growing as well. I'm currently waiting to see Dr. Nancy Klimas, 4-5 more months to wait. I believe she will be able to officially diagnose me and tell me which subgroup I may be in. I hear she can get most of her patients back to functional again. I hope her cure works in the clinical trials she is doing on humans now, after it worked on mice.

Thank you for sharing your experiences. What do you mean by "subgroup"? Are you talking like, auto-immune versus infectious versus biome imbalance kind of thing? Or do you have some hunch on what is affecting you but need specifics in what exactly it is?

If it were me I wouldn't take one more dose of antibiotics. You said viral onset in 2016. That's what I would focus on.

This is a fair assessment, but as @5vforest says Lyme disease in its early form can look a lot like virals. I think it was more the case of, I got sick several times in a row because I was living in the petri dish of germs that is college dorms, and that maybe resulted in some post-viral fatigue or weakened immune system that allowed the Lyme bacteria to take root when it so happened that I was exposed to Lyme soon after.

Low neutrophils can indicate a chronic infection.

Work to get through to the doctor that without these you ARE getting worst so he either needs to suggest something else to you or you need to get back onto them. If something is helping you, dont stop it...it does not matter how long one is on something as long as it is not causing actual issues and as long as its helping.

Definitely, I think it's pretty clear that the antibiotics were doing something, so I think I'm going to suggest putting me back on them to maintain my health while we run more tests and do some sleuthing into deeper issues or a more focused approach.

 

[the_phscale]

@5vforest Thank you for your detailed and helpful reply. I appreciate you taking the time. You have my timeline correct- I left my original LLMD because I was paying for it with my student insurance. I have since graduated, and so lost that insurance. I'm on my parent's plan which I am very lucky to have access to, but it meant that finding a new doc was necessary. The current rheum I'm seeing is not an LLMD as defined by ilads, but I felt pretty good about his demeanor and qualifications. He came with several word-of-mouth recommendations. I'll ditch him if I find a designated LLMD or when it becomes clear that he doesn't know what he's doing, but for now I think he can still help me.

I'll push for another IgeneX test, I think, as well as tests for common co-infections since those weren't run in the first batch at all. I feel like the borellia might be gone, but the bartonella or something similar is not and that's why I'm still symptomatic. I'd like to find the right drug or combo as you said, and I'm willing to do some of the more heavy-duty drugs or therapies if one strong punch will do me more good than months and months of chipping away with low-level or insufficient antibiotics. An LLMD might know what that treatment is for the specific bacteria (and what tests to run, I don't know if my current doc will even know that). I've heard all the crazy things people do: hyperthermia, IVIG, bee venom, etc, and I know people who have seen results.

I had early sjogren's markers on tests ordered by the first doc, the diagnosing LLMD, but he told my mom and I not to worry about it, that it wasn't enough to be causing symptoms, or that the markers might actually been positive due to something else like a confounding factor. He said the same thing about a pneumococcal test- I had pneumonia as a teen and apparently because of that I'll always test positive whether I have an active infection or not. I don't know how legit that is. My mom and I always found it a bit odd.

 

[manasi12]

I have Sjogrens and dysautonomia too.Rheumatologists aren't sure that it's Sjogrens but I definitely know the autoantibodies like Muscarinic autoantibodies cause dysautonomia. Even if they early Sjogrens markers , IMO they can cause dysautonomia.
I'm still to get any effective t/t yet but if you are in US , pretty good chances for decent treatment.
And yes I too feel much better on antibiotics but I got a lingering infection after wisdom teeth removal 8 months ago. Everything is so complicated.

 

[Belbyr]

Thank you for sharing your experiences. What do you mean by "subgroup"? Are you talking like, auto-immune versus infectious versus biome imbalance kind of thing? Or do you have some hunch on what is affecting you but need specifics in what exactly it is?

When I say subgroups I mean things like: POTS, Chronic Lyme, Fibro, CFS, Dysautonomia, etc.

I think everyone here needs to get checked for autoimmune. The best way to do that is skin biopsies. It's been found that 50% or more of people struggling with chronic illness have nerve fiber death. (autoimmune). I don't have it.