Lyme Questions

[p8d]

Hi All,

I was recently diagnosed with chronic Lyme and it seems so have a number of you. I'm seeing a Lyme literate M.D., (naturopathic) and like him but it was only 1 visit. I know Lyme is suspected by some to cause(?) Dysautonomia or make us more susceptible. My questions: did you get better (in any way) after treatment with antibiotics? How long did you take antibiotics and how quickly did you see improvements? Did you experience Herxmeier reaction? Any advice on dealing with that? Any experience/advice welcome.

Thank you, you have been a Godsend to me through this.

Take care,

P

[navyblue]

When people ask this question on Lyme boards, the popular answer seems to be "My POTS went away with treatment". Not sure about specifics, but that seems to be the norm.

[MomtoGiuliana]

This is an area that seems to be controversial. As you a probably aware. We do have members here who have been diagnosed with tick borne diseases and treated. I know of one member who was diagnosed and treated with a cocktail of antibiotics for a year by a LLD. Her POTS did not improve. I know other people say it helped them.

[p8d]

Thanks for the info. I guess I'll find out. I'm feeling good for the past several days so starting a bunch of antibiotics etc makes me concerned.

[ks42]

I was diagnosed with Lyme twice in the past, many years ago. The first time, after a lot of trial and error (and many doctors), I wound up using a Chinese medicine protocol that worked beautifully. Caused a mild herx (headaches, fatigue, brain fog, joint pain) but nothing I couldn't handle. The second time, I was (again, after some trial and error with different protocols) treated with oral antibiotics which worked really well.

However, the first thing the docs tried to do (both times) was put me on meds for lyme AND co-infections at the same time, which was WAY too much for my system - I couldn't handle the herx. After that, I changed docs and found ones who were more concerned with treating slowly, and treating only one co-infection at a time. That actually didn't cause much of a herx at all, especially since we started with low doses and worked our way up.

Although, it was the co-infection treatment that I believe was responsible for my success; treatment for lyme alone didn't do anything until after I had eradicated the co-infections. Based on clinical symptoms alone, the docs diagnosed me with babesia and ehrlichiosis the first time, and babesia and bartonella the second. My co-infection tests were either negative or borderline (not positive).

I didn't have POTS at the time I had Lyme; I've only developed POTS very recently. I have, however, visited a number of lyme docs to see whether the POTS is caused by some Lyme left in my system, or even a new infection. So far, we don't know. It seems unlikely though because my spouse also developed POTS shortly after I did, and so did my former roommate, so that's just weird.

One interesting thing to consider - I saw several lyme docs who had successfully treated POTS patients. They were all supposedly able to successfully eradicate the POTS, but said they didn't see improvement in their POTS patients until giving them anti-malarials for babesia (co-infection). I've heard similar success stories from POTS patients on lyme support boards with regard to anti-malarials. Obviously, though, it's very individual, and this is just anecdotal, so I don't know how true it actually is.

I felt amazingly healthy after treating for lyme both times. If I knew for sure lyme was causing my POTS now, I wouldn't hesitate to treat again, but I would do so VERY slowly, starting with one antibiotic at a time, at VERY small doses, given the volatile nature of my POTS.

[kclynn]

My son was dx with Lyme and co 2 years after he was dx with pots. He is cdc positive for Lyme which is very positive but a person can test negative for Lyme and still have it because of the way the tests look for immune response and the Lyme can affect an immune response. Anyway about your question. He felt much better after 4 months of treatment. Then continued to treat for another year. He is very fuctional but still has POTS symtoms. I don't believe the POTS ever goes away and would probably steer clear of Drs. that say it does. It does go into a sort of remission. My son is 20 and wanted to stop treatment so I don't know if further benefit could have been had. He had pretty much plateaued.

[p8d]

Thanks.

[artluvr09]

I got lyme in 2011. I had a 103 fever with a rash, achiness and a headache for 3 days. After we started antibiotics I got better. I was on antibiotics for 3 years. I still feel like I have some side effects from the lyme. Ever since lyme my knee aches when it rains the one that hurt when i had it. My brain fog worse, very tired everyday worse after lyme. And i never had migraines before lyme and now I do. Its a hard treatment because so many doctors have a different approach on treating. I hope you feel better soon!

[issie]

http://forums.dinet.org/index.php?/topic/26246-long-awaited-article-the-best-thing-now-seldom-have-severe-pots-or-mcas/

Maybe this will help.

Issie

[p8d]

Thanks everyone for the replies. One more question. Since I started Lyme treatment my POTS seems to have gone nuts. I know about herxing but has anyone else experienced this? I had been exercising about 40-50 minutes on the bike every other day and the other days doing strength training. I just can't manage that anymore. It's very discouraging. I do feel better at times but also worse others.

[issie]

I'm in another flare and my doxy quit working. He switched my meds and I was herxing bad and couldn't function with the new med. It caused all SORTS OF POTS symptoms and severe brain fog. I think it also imbalnce my gut flora. I stopped b it this week. He will have to try something else. That last med really affected me worse than the Doxy. Hoping to go back on it later. So could be a herx for sure. And may have to change med. This one caused severe leg weakness for me.

Issie

[ks42]

Yes! Any symptoms that are caused by the lyme (so, for example, if your POTS was actually caused by lyme) will get worse when you herx.

Also, since I last posted on this thread, I wound up seeing a new POTS neuro, who has had quite a few patients who tested positive for Lyme. After treatment, apparently many of them no longer have POTS, although some of them do. I still thought that was really encouraging. So, don't give up hope!

When I did treatment, I felt worse, then better, then worse (and so on), for about the first 6 months. I felt worse more than I felt better. After that, the times I felt better started to greatly outweigh the times I felt worse, until I only felt better (I think that happened at about the 1 year mark). It's a slow progression, but if you're having times where you feel better at all, that's encouraging!

I know it's discouraging not to be able to exercise, but when I went through treatment, I was told by all my Lyme docs that cardiovascular exercise worsens herxes, worsens Lyme in general, and that I shouldn't be doing it until I was 75% improved at least. I was only allowed gentle stretching and strengthening (like yoga) for the first part of treatment. That was from the ILADS (International Lyme & Associated Disease Society) protocol's exercise guidelines I believe. You may have different guidelines though, based on how sick you were/are and the fact that you have POTS, so I have no idea if these guidelines would apply to you or not. For me, though, avoiding cardio in the beginning was definitely helpful (and necessary).

[p8d]

Issie, thanks for the info. I am sorry you not getting help with the doxy anymore and the new med is causing trouble, I totally relate. How do you tell the difference between a POTS or Lyme flare and a herx? I only know I'm herxing with the fever, flu symptoms. Lots of other things feel like POTS. I only know it's POTS with the BP HR swings.

[p8d]

Ks42, thank you, that gives me hope. What did you do for detoxing? Anybody else have ideas? Obviously the IR sauna, magnesium baths are out. I don't tolerate magnesium sulfate anyway, let alone the heat. I'm doing bur bur, pinella, parsley, alka seller gold, loads of supplements, ionic foot baths. All suggestions welcome. The hope you are providing is priceless.

[ks42]

I never reacted well to burbur, pinella, or parsley because even if I take these alone without other lyme meds, they cause herxes for me (they all have a little bit of anti-lyme activity and will mobilize heavy metals, so my LLMD explained that some people who are really sensitive do herx from them). Also, they're diuretic, so they're rough on those POTS patients who are hypovolemic. They work great for many people (including other POTS patients I've talked to), just aren't the best option for me. I did do well with the Alka Seltzer gold though.

So, my personal favorites are:

Chlorophyll - I was on this for a year when I did the Chinese medicine protocol. I had very minimal herx symptoms with that protocol.

Liposomal glutathione (good detoxifier without herx or diuretic action)

Bentonite clay with psyllium husk powder mixed in (toxin binder) OR charcoal capsules (take these 2 hours away from other meds though)

Quercetin (reduces inflammatory cytokines, which many people think are the reason we get herx symptoms to begin with)

Vitamin C (1-3g+ per day) - ester-c form.

I think my favorite was chlorophyll. That was the only one I needed during my first bout with lyme. Later on, the bentonite + psyllium was probably my best detoxifier with an antibiotic based protocol.

I was also on transfer factor both times to help modulate the immune response from herxing, and could tell a huge difference when I was on it. I know there were probably more that I tried at some point, but I can't remember at the moment. I'll update if I remember anything else.

[issie]

I find turmeric and ginger helps with the pain and the herx symptoms. As mentioned earlier, some docs think the herx is excess cytokines. Things that work on cytokines and inflammation help.

I also have MCAS and the herx cause that to be a lot worse. I get headaches and naseau with that. It causes hot flashes and with it severe anxiety from sympathetic nervous system activation.

I have neurological issues with my Lyme, coinfections and Protomyzoa Rehumatica. Seems to affect mitochondria and gives leg weakness and muscles just giving out.

As for POTS, there is the tachycardia with upright posture. Standing still too long brings on naseau, dizziness and the need instantly for a chair to sit in and some way to get your feet up. Of course there is the anxiousness all those symptoms bring.

BUT.......I was good for nearly two years. My POTS at times was under control. At times I did not qualify to say I had it. The MCAS stuff was there, but not too bad. And EDS of course, brings pain that doesn't really seem to get much better. I do have a FMS label and not sure where one ends and other starts. But I was living my life, traveling and doing some very stressful caregiving for my parents who both passed away within two weeks of each other. I think that stress and being exposed to mold in their house triggered things to get out of balance again.

My DIET is my key. That also got messed up and now I'm back stricter again. I know that makes a difference.

Since Lyme and some of these other protozoa form biofilm - magnesium makes that stronger. My doc has found his patients to get much worse with it. He doesn't recommend Epsom salt either - since it's magnesium. We have to break down the biofilm to get to the protozoa, virus and bacteria that it houses and forms a forcefield around. I do that with either Lumberkinanse or Serrapeptase hours before I take either my antibiotics or antimalarialal herb.

Doxy was not as hard of a herx and I did really well with it while it worked. I'm sure, with time, I will get back to "mostly good". If I had it once, I will have it again. Try to stay positive. Attitude makes a huge difference.

Issie