Lyme vs. MS

Welcome to our community, Skubi Du. (great name by the way)


I'm sorry for all your suffering....I hope we can help/support you here.

Unfortunately it's the 'norm' for docs to not be educated/well-versed in lyme and co's.

That is the reason I didn't join any of the facebook groups - anonymity.


How much experience did the LLMD have?
The dysphonia is one that you want to take care of sooner than later. (from what I've read/heard)

Did your LLMD treat your MCAS?
Due to your symptom severity - I do think you need a very experienced LL Dr. to guide you.

I was also told my EMG and NCS was fine too. But I had nerve pain, twitches, numbness, weakness...

My reflexes were different on left side compared to my right.
I read that is significant.

Because of your lyme tests, plus your symptoms....history...I think you should focus on lyme - that's my opinion
I believe MS symptoms/signs is caused by some 'thing'....and in your case - lyme.
There aren't very good options to treat MS...so if it were me...I'd concentrate on lyme and coinfections.

Welcome!

I'm sorry for how much you have been going through. I hope we can be helpful or at least supportive! I'm not on Facebook, either, and I believe that this forum is an important place for those of us managing these infections and dysfunctions.

I'm sure you have looked into this more than I have, but there are people who contend that any sort of neurological or autoimmune illness that occurs with Lyme is caused by Lyme, "turned on" by Lyme, or at least exacerbated by Lyme. This implies that treating Lyme is imperative, even if other diagnosable diseases (e.g. MS) arise. If you were found to have MS, then obviously treatments like corticosteroids for acute attacks or immunosuppressant treatments for MS would be best avoided for someone with Lyme and co-infections. Plasmapheresis, on the other hand, is used as a treatment for both. If you have autoimmune involvement, then many herbs and other immunity-boosting treatments common with Lyme might make you feel worse. Have you had testing for autoimmune markers done? In those cases (autoimmune involvement) people tend to feel better and make progress with treatment that bypasses the immune system, like pharmaceutical antibiotics or resonant frequency devices like rife. And of course considerations that reduce autoimmunity (dietary changes, metals, mold, etc.).

When you look into the neurological manifestations of Lyme, are there some symptoms you have that point to MS but not to Lyme? You could have both, of course, but an LLMD really should help navigate treatment, in that case.

Have you tried any treatments specifically aimed at neurological health?

Also, I don't understand how you can pass a tilt table test for dysautonomia if you pass out. Isn't that the definition of failing? I definitely definitely would find a new neurologist, one who specializes in dysautonomia, even though I know those are few and far between. Some say to eat more salt and wear compression stockings, some are fans of meds, and others will suggest herbs or limbic system retraining programs to get at the root of the problem. Or all of the above.

Mast cell stuff is so tricky and makes everything else harder. What have you been doing to treat it so far, and has anything helped? For me, quercetin, a low-histamine diet, and limbic system retraining (DNRS) have curtailed most of my symptoms, but everyone's mileage varies.

I hope you find a path that produces some relief for you very soon!

Thank you everyone. This is already a lot to think about.

My LLMD was one of the few in Florida that I could afford. I *think* she was good. I don't know if we can name names, in case she needs protection. I only did oral antibiotics and I was having a lot of gut problems between the doxy, the tinidizole and the coartem. She was pulse dosing me, which seemed to be popular in 2015.

I developed Bell's after the first dose of Coartem. I could not tolerate it after that. The regimen was also hard on my gallbladder for some reason. Doc told me to "get ready to lose my gallbladder," and "a lot of her Lyme patients had their gallbladders removed." I wasn't keen on that, plus it's when my histamine problems really began. I'm sure it was gut dysbiosis from nine months of abx. I stopped seeing her, as all she did was give me an Epi-pen and told me to avoid histamine foods. I was down to nine foods at the time and at six feet tall, weighed 140 pounds.

I quit abx and started herbals and BVT. I had insane herx on bvt. Got very ill and could not ramp up past 2 or 3 bees, and the first day I did that third bee, I was in the ICU that night with the arrhythmia. I was afraid to try BVT after that. This was December 2015.

I got better for a few years, though I was still not able to work much.

My new neuro is with Cleveland Clinic. I'm less than impressed with CC, though I did have hope in the beginning when the neuro didn't laugh me out of the office for saying I had Lyme. That would have happened in South Florida in 2015.

I have not tried any treatments specifically aimed at neuro health, other than some mushrooms and supplements. I have been reading about remyelenation, but I don't actually know if I am demyelenating.

I am trying to get out of Florida. We moved out of a mold house but I need to do more to avoid mold. It's everywhere. I eat very, very clean, as you can imagine with histamine issues.

I cannot take steroids at all (or contrast dye, or perfumes, or latex bandaids, and the lost goes on), so I would refuse typical MS steroid treatment anyway.

My only autoimmune markers are aTPO --thyroid antibodies. Have had hashi's for 21 years. I have been diagnosed with sjogren's with negative blood work. Other autoimmune blood work....negatory, though high inflammatory markers and some weird stuff with iron. Low ferritin, high iron. I have a gene for hemachromatosis, so I'm watching my iron. I suspect I need to donate blood, but I am afraid I will pass lyme to someone, so I don't.

I do not know about symptoms that only look lime MS and not Lyme. I have to think about that. I do have cycles of better energy and then relapses into exhaustion. I don't seem to have bigger limb problems. It's mostly in feet, but also burning patches on skin and allodynia -- painful skin...sometimes I can't put cloth on my leg. Sometimes I can't pee well, but Lyme and mast cell stuff can also mimic chronic cystitis.

Now that you have helped me to think about it....if it looks like a Lyme duck and quacks like a Lyme duck.....I have SO MANY LYME symptoms still. I think I am overwhelmed and hopeless about it ever getting treated.

Lyme docs in Florida seem to be really expensive. I just signed up with a group of functional med MDs that are focusing on personalized medicine. They are doing a lot of genetic testing, gut testing, and I have access to some of their specialists. They are interested in working with me with the mast cell stuff, and are open to Lyme. They are huge on diet and are very cutting edge.They do have a neurologist, so now that I am with them, I will be seeing their neuro, too, so I suppose my second opinion will come from him. Overall, it is cheaper to see these guys than LLMDs here....if you've ever heard what some of the Florida clinics charge, you will understand why I went this route.

There is a MCAS doc, Dr. Afrin, who just partnered with an LLMD/chronic fatugue specialist. I heard he has a year wait list though, which is why I went with the personalized med guys for now. I will call Afrin's office and get on their waiting list just in case.

I'm glad I found you guys. I'm feeling pretty hopeless right now, so it will be good to have a community again. I just got turned down for disability, and this neurologist told me he won't sign anything because all my test results are normal. I'm going to get my EMG results on paper and see if both legs were the same. One leg was excruciating to do, and the other wasn't bad, so maybe there were differences.

Oh! One more thing...I just lost a tooth, and under it was a severely infected jaw bone ...on same side as my bell's palsy. I did one vitamin C IV and a few HBOT sessions and thought I was going to die from herx. Especially the vitamin C. It's quacking like a Lyme duck, isn't it?

I'll start taking my Buhner again until I can see an LLMD. I'm so glad I posted. You guys have helped me so much.

Saraeli, I am looking at DNRS right now. Which type of training did you do? Seminar? Online? Videos?

How long before you saw results?
How long did you do it?
Do you still do the hour per day practice?

Skubi Du,

I saw you mentioned mold further down in the post. That was actually the first thought I had after reading your initial post.

Some of your symptoms could be entirely from mold. There is a big overlap of symptoms between mold and Lyme/coinfections, especially bartonella. The voice thing could definitely be mold. So can dizziness, loss of balance, hearing loss, burning, vision issues, memory loss, etc. Also the fact you treated with abx a year and said you were now treating with herbs because you “have had a bunch of symptoms come back.”

I believe when people improve or recover initially with abx and symptoms later come back, it can be a strong sign that something else is suppressing the immune system and causing immune dysfunction again. Mold, heavy metal toxicity, and dental infections are all prime suspects.

I’m in SE GA, so I understand how it feels impossible to get away from mold. Are you being exposed to mold in the building where you teach? My mother recently bought a house with known water damage. At first, I didn’t think I was having much reactions to the house, but after subsequent visits, I noticed I had hoarseness after being in the house.

I also have experienced ear pain, dizziness, loss of balance, fluctuating blurry vision, and Sjogren’s type symptoms (with negative tests) from toxic mold exposure in water damaged buildings.

Have you been evaluated for CIRS from mold? There is a battery of testing for that, and it is treated with the Shoemaker protocol usually using Cholestyramine as a toxin binder. Of course, removal from mold exposure is the first step. There are doctors certified in the Shoemaker protocol. I know there is at least one in Florida. There are also many doctors who are now a part of ISEAI, a group dedicated to helping those suffering from environmental illness.

Also you mentioned leaving a mold house. If you brought possessions with you that came out of that house, you could very easily have contaminated the environment you moved to or be reacting to the toxins on the possessions.

For what it’s worth, Jill Carnahan believes mold exposure is a primary cause of MCAS. I’m sure there are other things that can trigger it, but mold is a big one.

I don’t think Cleveland Clinic will have much to offer in dealing with all this. I don’t think they are nearly as alternative and up-to-date as they try to seem. That’s my impression based on things I have heard. I have never been there and have no personal experience with them. Just my second hand opinion.

1. Avoid mold at home, work, and possessions.
2. Detox the best you safely can - dry brushing, epsom salt baths, sauna, sweating, liposomal glutathione.
3. Take binders - activated charcoal, chlorophyllin, modified citrus pectin, bentonite clay, Zeobind (zeolite), Cholestyramine or Welchol (Rx - potent but may only be tolerable at tiny doses).
4. See a biological dentist if you haven’t already to make sure that dental infection, etc are completely taken care of. Get amalgams safely removed if possible. If you have root canals or any metal implants, they can be messing up your immune system.
5. Try to find a doctor who is experienced with Lyme, mold, and MCAS.

Welcome to the forum. I hope we can help you. As for disability, do you have a supportive primary care doctor who can document your limitations? Are you talking about Social Security Disability or retiring from your job under disability? I was able to retire under disability but was denied Social Security.