I was diagnosed with MS in 2010 for brain and spinal lesions. Never treated. In 2012, I was diagnosed with lyme and bartonella. In 2016 I was positive for babesia microti and duncani.
I have treated off and on with antibiotics, rife and homeopathy since 2012 and just started Buhner herbals with malarone.
I had a MRI two weeks ago for head pressure, eye pain and headaches. The MRI showed a large increase in lesions with active ones.
Now my LLMD says it has turned autoimmune and I must see a Neurologist and treat the MS and that we will need to keep me on antibiotics.
I am so confused and just want to cry. I did not think an actual LLMD would ever want their lyme patient on MS drugs. My LLMD says that yes you can have both if it goes autoimmune.
Has any of the big named lyme doctors ever suggested this? I feel defeated.
Posted by Rivendell (Member # 19922) on :
Boy, I would be discouraged by that too! I know it is hard to find good LLMDs, but would it be at all possible for you to get another opinion.
But, I am not a doctor and don't have MS. Maybe your LLMD is correct. However, it would seem that suppressing the immune system would make the lyme worse. And I am just assuming that is how MS is treated.
That being said, I have asthma and take a steriod inhaler, which is similar, I think.
I hope someone with MS can give you more insight.
Posted by Stumpy (Member # 27320) on :
Rivendell, I am thinking the same that by suppressing the immune system it will allow the lyme and co-infections to go wild.
Posted by Badtick (Member # 9794) on :
Consider LDN if you haven't already. I am currently using it for Lyme but the biggest success for this treatment is currently for MS.
Posted by Stumpy (Member # 27320) on :
Thanks Badtick!! I started 1/2 mg last night of LDN. Appreciate the response.
Posted by Keebler (Member # 12673) on :
- Glad to hear you are giving LDN a start. Just be sure to not jump to the next incremental dose until you feel well on the lower dose.
This has helped many very well, yet not others. So, if it does not agree with you after the safe incremental increase to LOW DOSE, do not hesitate to consider other approaches.
MEDICAL MUSHROOMS - book mark this topic -
would be my next avenue to consider but I don't have a nice links set for that. In fact, I view medical mushrooms far more favorably to help immune function than I do LDN. Sure helped me more.
The herb, STINGING NETTLE may serve to compensate for the reaction by calming the the cytokine storm whether part of a herx reaction or reasons for on-going inflammation.
CELIAC / gluten issues can also also cause lesions in the brain, inflammation / cytokine load increase that may be misinterpreted as immune over activation - but that would be because something is out of whack CAUSING immune function to do that . . . not because the immune system is just attacking - it's acting out for SOME REASON.
Herbal Safety considerations & reference books; etc.
BOOKS - Links to many articles and books by holistic-minded LL doctors of various degrees who all have this basic approach in common:
knowing which methods offer assertive & direct impact, which are only support and which are both. And when to use what, how to combine, & when to step back.
You can compare and contrast many approaches with links to articles, books, methods . . . -
Posted by Lymetoo (Member # 743) on :
I can't imagine a real LLMD doing this.
Many prayers for you if you decide to go this route. I personally would be in the hunt for a new LLMD.
Posted by Keebler (Member # 12673) on :
- Echo to LymeToo: "I can't imagine a real LLMD doing this"
I cannot, either. Not unless the "MS" treatment would be overseen by a true ILADS educated LLMD / neurologist, of which there is about one (maybe two) in the whole country.
I think it would be wise to expand your search for a better doctor.
Backing up, though:
You say: "In 2016 I was positive for babesia microti and duncani.
I have treated off and on with antibiotics, rife and homeopathy since 2012 and just started Buhner herbals with malarone."
(end quote)
Could be that Babesia is the most important thing to address right now. Since antibiotics don't treat babesia, it's too bad that your treatment for that is now just starting.
I sure would never consider steroids, biologics or ANYTHING that would suppress immune function with babesia on board. I also doubt that a "MS" doctor is going to know anything about babesia and how it might be connected to your overall symptoms.
Babesia could be a huge impact on immune activation or other immune dysfunction.
You don't mention if you used RIFE for babesia, though. Regardless it can be a tough nut to crack, both kinds can be very different - and it can be chronic, too.
Sorry that it's all so complex. Just be sure to take it one step at a time and stay centered / grounded and know it can still get better. It is possible.
Your current doctor might be covering his, uh, bases and going with the medical board approach to this as they would likely disagree the lesions can be due to various chronic stealth infections, not just lyme.
It's easier to hand you over to the typical ways of our medical system.
And - there may be some advantages to your looking into that -- but you have to be so on alert and so well educated and more up to date than any links here - to know when what might be suggested, or what might be ignored by a "MS" specialist is good or bad in your case.
Alert:
Steroids and "biologics" are both often used day to day, for years and years for those diagnosed with "MS"
For background, be sure to avoid steroids & also biologics for they can cause lyme / other infections to blossom and create more havoc.
They depress immune function. You do not need depression of immune function, you need modulation, support, balance.
The way I see it, if the immune function is in overdrive for someone with lyme, treatment for lyme - or other infections - is missing the mark.
The immune system goes into overdrive when it's trying to HELP you. IMO, the immune system is not going to attack healthy cells just to do that. It's seeking out hidden infections that are not being adequately addressed by other methods.
In addition: support to control inflammation might be missing the mark, too.
Steroids are used to lessen inflammation & lower the cytokine load / storm. In a true life threatening emergency, that might be required. However, there are far - far - safer ways to both lower inflammation and lessen the cytokine load / storm.
Intracellular stealth infections are discussed as relative to MS and other neurological conditions. -
Posted by Badtick (Member # 9794) on :
You are welcome.
I have been on it for 6 months and doing well. Having Lyme can make starting LDN interesting. I use the dilution method for titrating up my dose.
There is a good support group on FB called LDN Got Endorphins. Lots of folks with MS and the MS/Lyme combo on there.
Posted by foxy loxy (Member # 47053) on :
I amen the LDN. My mom has M.S. and lyme and since being on LDN she hasn't had any flare ups.
My sister has m.s. style symptoms but had a negative lyme test and LDN helped her about 95 percent. with minimum flare ups.
I have lyme and co's and LDN does nothing for me.
I also second Keebler when she says take on Babesia. It is the WORST infection out there and DO NOT underestimate its tenacity and what it can do to you if it gets in your brain.
Throw multiple antimalarials at it at the same time... etc.
Best wishes!
Posted by Stumpy (Member # 27320) on :
Lymetoo, yes this is a real LLMD which is why I am upset.
foxy loxy and Badtick, I am so glad that LDN is helping all concerned. I hope it helps me.
Keebler, lots of good info. I just started the Buhner herbals but I have been on malarone and zith for 9 months. It has been awful. I have herxed the whole time and mostly housebound. I just stopped zith but still on artemisia and cryptolepis.
I tried babesia rife frequency 570 for 1 minute and honestly thought I would die. Once I get the load down, I will rife again.
I did have c. pneumonia also and I treated for 10 months with rifampin and zith for that. I have tested negative for that recently.
I think I need a new doctor. I think MS treatment will make me worse.
Posted by foxy loxy (Member # 47053) on :
also, give ldn plenty of time to work. It took many months before it really helped my sister.
Posted by Stumpy (Member # 27320) on :
Thanks foxy loxy! I will.
Posted by Charlie Fitzgerald (Member # 50657) on :
quote:Originally posted by Stumpy:
I have treated off and on with antibiotics, rife and homeopathy since 2012 and just started Buhner herbals with malarone.
I had a MRI two weeks ago for head pressure, eye pain and headaches. The MRI showed a large increase in lesions with active ones.
Now my LLMD says it has turned autoimmune and I must see a Neurologist and treat the MS and that we will need to keep me on antibiotics.
Pretty long time being on antibiotics and not making much progress, but what type of antibiotics have you used. If you don't rotate properly, even use the right combinations, multiples of up to 3, you'll eventually hit a road block and not make progress, been there done that!
Sadly some Doctors might think because you haven't progressed, they might lead you into thinking its your body's fault and it's basically turned into autoimmune.
I can tell you from experience here in Michigan, many LLMDs aren't up to date with the latest protocols. When I found out certain LLMDs didn't use proper antibiotic protocols, I left them and moved onto a more educated LLMD.
There's so many breakthroughs that have been made in last few years. If you haven't tried Tindamax, Flagyl, or Alinia with Ceftin and Doxy, you need to.
Dapsone and pyrazinamide are two new drugs that Doctors are using these days to combat the chronic lyme infection. I know there are probably plenty of people on this board that would never try them because of how powerful they are and side effects... But you must understand, these are drugs that are used for Tuberculosis and Leprosy. Two bacterias that are resistant just as Lyme is.
I know many don't want to hear this, but truth is, you'll need pretty hefty antibiotics if your infection has gone chronic to really make progress.
Studies are showing how resilient this bacteria is in vitro, taking mitomycin c, chemo to completely kill off all persister cells. Once you understand that, you know what you're up against.
I think using herbals in combination with strong antibiotics could really help you make some effective strides. Using just herbals work too slow, rife is up in the air with me. This is just from my experience.
Good luck and take care!
Posted by Rumigirl (Member # 15091) on :
Yes, from my experience, you would be best served looking for the most experienced LLMD you can. I certainly wouldn't do the MS meds, even though I have what a regular neuro would likely say is MS.
For the autoimmune portion, if that's it, IVIG can be very helpful. But the first order of business would be getting a new LLMD and getting on treatment, different treatment, that is.
I agree, with what you're dealing with, herbs, rife, and homeopathy will not be enough. Some of that in addition to abx is another thing. But not too many things at once, though; that can backfire.
Onward and upward.
Posted by Stumpy (Member # 27320) on :
Charlie Fitzgerald, I think you are right and I have not had the correct combinations of antibiotics. I need to find a new LLMD with more knowledge.
Rumigirl, I've been told by others to try IVIG. I will have to look into it some more.
Posted by Tincup (Member # 5829) on :
Hey Stumpy,
So sorry you've been disappointed by your LLMD and the news about MS.
When I first read your post and symptoms I thought Babesia. I see too that Keebler mentioned it also.
Having both strains does make for a hard time ahead. I hope you will consider that before trying any other meds that may or may not help and which could allow the infection to become worse.
Posted by Stumpy (Member # 27320) on :
Thanks Tincup for your concern. I am definitely going to continue babesia treatment!
Posted by Rivendell (Member # 19922) on :
Okay, what is LDN? Thanks
Posted by Lymetoo (Member # 743) on :
AMEN CHARLIE! Posted by bluelyme (Member # 47170) on :
bvt will cover your bases ...ms and als are bs diagnisis of elimination imo
Posted by Stumpy (Member # 27320) on :
bluelyme, BVT sounds interesting. I need to look at it some more. Thanks!
Posted by Lonestartick (Member # 2151) on :
Stumpy, something to consider is there is recognized link between gluten sensitivity, undiagnosed Celiac and white matter lesions like the ones in MS. Many LLMDs are now recognizing gluten sensitivity and also the inflammatory effects of gluten on patients with Lyme Disease. I mention this because when I was first diagnosed and started treating LD in 2000 my LLMD almost didn't accept me as a patient because he suspected MS. During my journey with ABX treatment and healing, I didn't begin to make real and lasting progress until I was diagnosed with gluten sensitivity via Enterolab's testing and I went strictly gluten-free. (You'll want to have some type of testing because it's not enough to nearly be gluten-free as cross contamination would still be enough to trigger damage and symptoms if this pertains to you.) That made such a lasting difference for me. I've been in remission and off of ABX for over a decade now. However, if I accidentally ingest gluten, I have neuro symptoms. https://www.glutenfreesociety.org/gluten-your-nervous-system-depression-brain-abnormalities-and-neuropathy/
For dealing with healing from MS, a gluten-free, grain-free anti-inflammatory diet and info about LDN (low dose naltrexone) you might enjoy Elana Amsterdam's Elana's Pantry website. Her recipes are incredible. (I've always wondered if she has perhaps had a history of undiagnosed LD, but she does remarkably well and my family and I love her recipes.) www.elanaspantry.com
This may seem like a lot to follow up on, so don't feel you have to do it all at once. You might give your doctor a chance to explain what he means by addressing the MS first as I can't imagine he means for you to embark upon steroidal treatment. If anyone suggest steroids to heavily suppress your immune system, you may want to seek another opinion. Some LLMDs use immune modulating biologics to some degree, though I don't tend to keep up with the latest news anymore.
Posted by Stumpy (Member # 27320) on :
Lonestartick, thank you so much for your response. My new Integrative doctor wants me to completely remove gluten and I started LDN over a month ago.
Unfortunately my actual Ilads LLMD told me that I may have to go on MS drugs and antibiotics. I am looking for a new doctor. I will not do that.
Elana's pantry looks very interesting and tasty.
Posted by Lonestartick (Member # 2151) on :
I haven't attended many conferences lately, but I attended ILADS in 2015 and recall one of the presenters discussing how a it was sometimes advantageous to use biologics when treating certain subsets of patients of with autoimmune and neurological symptoms in order to obtain good results. They were going to be discussed in a breakout session I didn't attend, but the consensus was that it's useful in certain patient populations.
Given how individualized patient presentations can be, you may want to investigate this further before jumping ship. If someone were to say no antimicrobials and only immunosuppressive drugs, it'd be wise to run, but your doctor may have sound reason to consider this type of approach. For instance, in your case it might be particularly important not Herx too heavily and to mitigate any autoimmune damage. I know just enough to know there have been discussions of the adjunctive use of biologics in our patient population, but not enough to have kept up. Perhaps others here have and can share more.
Elana's site is wonderfully put together and all of her recipes are thoroughly proofed. It's important to read her ingredient list because not all almond or coconut flours behave the same, so she recommends only one or two that perform well and yield repeatable results. When it comes to cross contamination, one can't be too careful about hidden gluten. Holiday baking used to be disastrous for me because I didn't realize how many spice blends have wheat added to enhance flow and reduce clumping. Elizabeth Hasselbeck's Gfree book was the one that helped me understand cross contamination in way I could apply for healing. There are probably lots of books now that mention it than when I first started out.
Wishing you health and healing.
Posted by Stumpy (Member # 27320) on :
Much appreciated Lonestartick! I will listen to what my doctor is saying. It was to stop the autoimmune dysfunction and I was also put on LDN. We'll see.
Posted by WPinVA (Member # 33581) on :
I was in a similar boat - autoimmune markers were alarming. I found a LL rheumy who had to put me on steroids to stabilize. She really dislikes the chemo drugs used for AI treatment and she doesn't like steroids either, and knows the risks for knew they are needed for certain people.
so I would try to find a LL rheumy who understands the nuances or at least will be open minded and work with your LLMD.
I think it is actually good that your LLMD recognizes that you have this and it needs to be addressed. Mine did not unfortunatley.
Posted by Stumpy (Member # 27320) on :
WPinVA, I hope you are doing better and the short dose of steroids helped. I actually have found a lyme literate neurologist not far from me but I can't get an appointment until the end of March.
Posted by Rumigirl (Member # 15091) on :
IVIG is also used for autoimmune conditions & for MS. Personally, I believe MS really is Lyme, but I understand that one can develop autoimmune conditions on top of the Lyme, coming originally from the Lyme.
The IVIG needs to be recommended by a neurologist, after doing a nerve biopsy (punch skin biopsy). Or maybe just through the MS diagnosis.
I would rather do that than the biologics for MS, personally. But I am not giving medical advice, of course.
You need to be treating the infections, of course, along with other issues, like gluten sensitivity, heavy metals, detox, etc.
Posted by Stumpy (Member # 27320) on :
Rumigirl, I have heard about IVIG. I am going to ask the neurologist about it. Thank you so much for mentioning it. I didn't realize it could be used for autoimmune issues!
Posted by Lonestartick (Member # 2151) on :
Stumpy, I'm so glad to hear you've found an LLMD Neurologist. That's a great find given your particular challenges. I've never had any personal experiences with LDN, but I've had friends who've had very good results with it. There are so many layers to illness, from the carousel of co-infections to mold exposures, CNS symptoms with gluten sensitivity or Celiac, heavy metals, etc, it's great to find someone who can help to guide you. Onward and upward for you and may the New Year bring you much healing.
Posted by Stumpy (Member # 27320) on :
Thank you Lonestartick! Hope you have a great year of health too!
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