Question about Lyme induced POTS

I started the protocol on January 11th. A few days later, I started having really bad nausea and dizziness. The room was spinning even when I was standing still. Forget even walking and turning my head.

Figured out that my blood pressured had tanked. Stopped my BP meds.

Got ahold of Treatment Nurse and was told to increase my salt intake to 6g (the normal max is 1.5g) and increase water. They told me to follow up with my Primary.

Salt and water did nothing. My Primary did CBC, electrolytes, and a few others. Salt was fine. Potassium was a bit low. Hemoglobin was very low. She looked at my blood work back to October and there was a steady trend downward of my hemoglobin beginning when I started the protocol.

I continued to feel worse and worse. I can't stand for even a min. Everything, even the most trivial thing, causes me to be out of thread.
My brain is gone for good. I don't remember anything. I can't complete a sentence. The half of a senentence I get out has wrong words & names. I spend around 18 hours a day sleeping. My body shakes. I have major tremors. I also have weird muscle spasms.

I'm fairly sure that they're treating Babesia because when I asked about IV abx they said we needed to take care of the Babesia first. If you start IV then the Babesia is impossible fight.

So they diagnosed me with POTS but had no ideas about the anemia. They prescribed midodrine but not quite a week in I was feeling worse. So I had my primary run the blood work and the anemia had resolved it self.

Im going to call back the Lyme doc tomorrow but was wondering if anyone had any ideas. I can't function. I sleep 18 hours a day. I can't drive. I can't even take a shower (I have to sit on floor to rinse my hair).

Any ideas? Im desperate.
Kim

No Omnicef, Bactrim, Minocin MWF wk 1,2 Flagyl Wk 2, nothing Wk 3

I was already on Plaquinel(another doctor prescribed it).

I know that Mepron and Malarone are usually used for Babs.

It was Dr J specifically that said that. I've been sick for 35 yrs so I specifically asked about IV abx.

I may have misinterpreted what he said. My brain isn't working but he may have said we need to try orals first because if you don't take of Babs and you switch to IV you'll never be able to get the Babs under control. So he might of meant treat everything with orals and if needed use IV later.

Since the appt where they started on the protocol I've only had a phone consult. At the time dizziness & nausea with moderate fatigue were the issues. She increased my zofran. She also added Topamax for headaches.

Since then its been many phone calls back and forth with not much results.

The anemia tho has resolved itself tho which is great because the next step was going to have a colonoscopy which I'm not due for until 2030.

By the way, in my first post it should have said "out of breath" not "out of thread"

Kim

Good post Ambella - glad you're making progress, however slow it may feel.

So - I'm going to ask my LLMD about the statements regarding going after babs before IV and see what she thinks. It's been 2 yrs since I started, maybe there has been new info to come to light. This kind of thing almost always depends on the patient, the symptoms and which infection presents more dominantly, but I'm intrigued.

-p

Shoot - it is gone! Weird. If you'd like to repost, I think you mentioned what your LLMD mentioned about treating babs first and what you're currently treating with.

It is absolutely true that IV is not required for nearly any manifestation of Lyme. Some think IV is required for chronic or neuro Lyme but there has been a lot of success for those people with other means, as well. Generally, people choose IV over oral abx due to severe GI issues like I had that would prevent proper absorption of oral abx through the gut. Personal experiences may vary but there are studies that showed similar success between oral and IV abx, with comparable levels of penetration through the blood-brain-barrier, key in addressing neurological manifestations.

Some LLMDs like to transition from IV to orals at some point, but I understand this less. Regardless, each person is different, has a different landscape within which the illness(es) have developed, have different combinations of challenges to the immune function and other problems, and respond differently to treatment.

I had the most neuro issues after being on various short courses of abx for chronic sinusitis and bronchitis - didn't know I had Lyme & Co at the time. They cleared up pretty well w/ Rocephin until I started on herbs to bust biofilms, then some flared again... and subsided after continuing on the Rocephin.

I've read many accounts of Lyme patients who have had to cycle through different antibiotics and different doses and pulsing and combinations of detoxing in order to make progress.

That's not to say that your solutions won't like in tackling babs first. I agree - GUESS WORK!

-p

Post Edited (Pirouette) : 5/2/2017 3:00:17 PM (GMT-6)

Pirouette - You may not remember but I bumped into you in the comment section of a Huff Post article about Joni Mitchelle (?). I think she died of Morgenelles and you mentioned Lyme. I had just gotten my test results from Igenex but no Doctor.

You kindly answered my questions and directed to the forum. A few months later you started having difficultly and took a break from the forum.

I also took a break basically because of the Election but I also was getting nowhere with treatment (herbal by myself). I finally decided to make an appointment with Dr Jemsek.

Had my intake in Oct. They changed some of my meds - sleep meds, supplements, few others. In Jan we talked about the short term treatment plan. He added Bactrim, Minocin and Cefdinir pulsed MWF 2 weeks on 1 week off. Flagyl on second week TTh.

I started having the symptoms right away but it wasn't bad and I assumed it was just a recurrence of previous symptoms. As time went on tho symptoms started getting worse.

It was Sat of the end of week 2 (beginning of no meds) so I thought maybe its a reaction to the meds. I frequently have meds that I have allergic reactions to but the symptoms are different.

I finally realized that last few times I got dizzy it was because of dehydration which caused my BP to drop. So I stopped my high BP meds. Couldn't find my home BP cuff.

Few days later I found my cuff. My BP had completely tanked. So I called Jemsek's and left a message. They said to increase my salt intake to 6g a completely ridiculously amount (normal max is 1.5g) and increase water. If it didnt resolve they wanted me to follow up with the my primary.

My primary ran blood work. Electrolytes, CBC, Thyroid plane, B12 and a few others. Electrolytes were fine. But what she did find is that my hemoglobin was low enough to be considered anemic. It turns out the my hemoglobin has been dropping since I started on the protocol.

It turns out the anemia has resolved itself.

Girlie - yeah, exercise is out of the question. I have a small sitting area in my bedroom with a chaise lounge. Bathroom is about 20 feet. Just walking there is too much. Nausea within 2 feet. Dizziness with 4 ft. After that it's like walking thru quick sand.

My hands shake just sitting here. Leaning from my chair to the floor to pick something up is enough to make me out of breath. Im sleeping 18 hours a day. Im having really bad twitches even laying still. I cant finish a sentence. I literally forget the sentence. Cognitive function is worse.

To all: My Dr is Jemsek so I'm not going to mess with any of the meds, when to take, how much to take, what supplements to take.

I am also on Plaquenil. I started that several years ago. Not because of Lyme (I hadn't been diagnosed yet). Because I started having more pain mostly in my joints. It was the only thing my Rheumatologist could think of & it was a last resort.

Thanks, Kim

Umm..well no..I have major problems with allergic reactions to medications. This was further back when it first became an issue. I didn't think it was an allergic reaction because the symptoms were wrong but I figured better to err on the side of caution. They're kind of slow getting back so I thought that was at least something I could do on my own that was reasonable.

I was about to start my no meds week & I felt no different. Since it takes some time to clear meds out of the system I took some more time. No difference so I started back on the meds & no difference.

Everything I read indicted that indicated its not uncommon for POTS to be triggered to be triggered by Lyme treatment. I just seem to be one of the unlucky ones that have a very severe cases.

The triage nurse called me back today to verify everything. My symptoms, my drug list, my BP and how it changes. I've been checking sitting, standing, then 2 minutes after standing. Laying down is hard because its hard to take my BP before I start to move around in the morning.

They asked about my diet. It's next to none existent. Very hard to eat much when you are so nausea you have to force food down. Mostly I've been eating fruit and soup. An occasional real meal when I force myself (& my husband) to take my Dad out.

So I'm not sure what they'll do. But at least they're taking it seriously. Probably helped that near the end of the the call to triage I was crying. it was real but whatever gets results.

Hopefully, I'll hear back from them tomorrow. Not sure what can happen but I wasn't this sick when before treatment. I was functional. Now Im not.