pamyla

I see my rheum. more often than my pots doctor now. I was referred there with a positive ANA and livedo reticularis, and they did a ton of bloodwork and that's how I figured out I have multiple tick borne illnesses. I am really thankful she took the time to really explore what was going on with me. Hope you get some answers.

Interesting reading....I looked into a gluten free diet a couple of months ago when I tested borderline for a gluten intolerance. I never did the diet, as I was struggling to get soy and egg out of my diet first. Just wanted to mention one of the products that I like alot, which also happens to be gluten free. I especially like the fact that I don't have to prepare anything Larabars - https://www.larabar.com/secure/index_.php They have some chocolate bars too, which I haven't tried yet, but sound pretty good Just wanted to mention this because I find the hardest part for me with these diets is keeping up with the preparation of foods I can actually eat.

good luck with the diet,

Pam

Have you ever tried a powder or liquid multi-vitamin? You could always start off taking just a little to see if it is tolerable to you. I like all-one's powder. I take the one that is rice based, which avoids any allergens like dairy or gluten. I get so tired of taking so many pills!!

good luck!

Pam

Hi, I am currently seeing a naturopathic doctor who works in conjunction with my lyme doctor. So, while not specifically for pots related issues, we do work on adrenal fatigue, regulating my hormones appropriately, improving sleep and regulating the immune system. It can be expensive to go this route since insurance typically doesn't cover supplements, but I think it has been worth it for me.

What I will say is that if you decide to see an alternative doctor, get referrals. Like any specialty there are good and bad doctors out there.

good luck,

Pam

I have one of those nature sounds alarm clocks and I wake up to the sound of the ocean. I find it much less shocking than music or beeping I also tend to set my alarm about 15 min earlier than I really need to get out of bed. That way I can hit snooze once or twice and wake up more gradually.

good luck,

Pam

I had a tetanus booster 3 or 4 years ago, and besides my backside being a little sore from where they shot went in I had no problems.

good luck,

Pam

Hi Amy,

Wow, sorry to hear you've had such a tough time of it. Hopefully now that you know about the babesia you will start to make more progress with your treatment. What meds do they have you taking? I have been on mepron since March - it makes me feel pretty icky, but has gotten somewhat better over time. And a lot of the babs symptoms like air hunger and neck pain seem to be getting better. The babs treatment has made the most difference for me in how long I can tolerate standing too.

Hope you continue to feel better!

Pam

Hi Lauren,

Glad to hear you are doing better! I know the treatment isn't easy, but it's wonderful that you are having improvement. Always great to hear positive news

Pam

Hi, I was also diagnosed with livedo reticularis. It shows up on my inner thighs during the winter and usually goes away when it is warmer out. I was referred to rheumatologist about this because it is not that common in adults and often indicates autoimmune disease. For me, it turned out the livedo was caused by lyme disease (or one of the other tick borne illnesses I have - not sure which specifically), and has actually improved with treatment.

As for the itching, I have had times when I've had really intense itching, but when I scratch it the itch actually moves to a different location. I never actually see anything on my skin however.

Hope you get some answers!

Pam

Hi Lauren,

When I started on zoloft I had a similar experience. I'd describe it as a feeling that I was kind of out of touch with reality - like being under water almost. Either way it was an annoying side effect for awhile and then it did go away. How much zoloft do they have you taking? For me I think they originally recommended 50 mg, but I always found I felt better at 25 mg.

good luck,

Pam

Hi,

I went through a few hyperbaric oxygen treatments a few years ago, although not for pots. For me it was recommended to help with the immune system. I've never heard of it being used for pots, but it would be interesting to see any research supporting this.

Here's what I can tell you about my experience with it -

1 - It was expensive - I think about $60 for a session

2 - I have problems with my ears withstanding pressure and this really aggravated them

3 - Unfortunately I really did not notice any kind of affect on how I felt energy wise. Maybe many more sessions were needed to get to that point - I'm not really sure.

4 - The one benefit I did notice from the sessions is that it cleared my skin up wonderfully, pretty much got rid of any acne I had. And, if I had a cut on my hand, after the session it looked like it had gone through a week of healing - that part was pretty cool.

hope this helps. Good luck with your decision.

Pam

Hi all,

I'm finding this an interesting topic. Since we're discussing methodologies I thought you'd be interested to know more about how the research was collected. The guidelines look to be based on 37 articles, out of 112 that were reviewed. The scientist side of me would be interested in knowing more about the criteria from which they selected their articles

Pam

http://www.neurology.org/cgi/content/abstr...5517.66976.28v1

Published online before print May 23, 2007

(Neurology 2007, doi:10.1212/01.wnl.0000265517.66976.28)

Received December 26, 2006

Accepted March 7, 2007

Practice Parameter: Treatment of nervous system Lyme disease (an evidence-based review). Report of the Quality Standards Subcommittee of the American Academy of Neurology

J. J. Halperin MD, E. D. Shapiro MD, E. Logigian MD, A. L. Belman MD, L. Dotevall MD, G. P. Wormser MD, L. Krupp MD, G. Gronseth MD, and C. T. Bever Jr. MD

From the Department of Neurosciences (J.J.H.), Overlook Hospital, NYU School of Medicine, Summit, NJ; Departments of Pediatrics and Epidemiology and Public Health (E.D.S.), Yale University School of Medicine, New Haven, CT; Department of Neurology (E.L.), University of Rochester School of Medicine and Dentistry, NY; Department of Neurology (A.L.B., L.K.), SUNY, Stony Brook, NY; Department of Infectious Diseases (L.D.), Sahlgrenska University Hospital, Gothenburg, Sweden; Division of Infectious Diseases (G.P.W.), Department of Medicine, New York Medical College, Valhalla; Department of Neurology (G.G.), University of Kansas Medical Center; and Research Service, VAMHCS, and the Department of Neurology (C.T.B.), University of Maryland School of Medicine.

Abstract Objective: To provide evidence-based recommendations on the treatment of nervous system Lyme disease and post-Lyme syndrome. Three questions were addressed: 1) Which antimicrobial agents are effective? 2) Are different regimens preferred for different manifestations of nervous system Lyme disease? 3) What duration of therapy is needed?

Methods: The authors analyzed published studies (1983-2003) using a structured review process to classify the evidence related to the questions posed. Results: The panel reviewed 353 abstracts which yielded 112 potentially relevant articles that were reviewed, from which 37 articles were identified that were included in the analysis.

Conclusions: There are sufficient data to conclude that, in both adults and children, this nervous system infection responds well to penicillin, ceftriaxone, cefotaxime, and doxycycline (Level B recommendation). Although most studies have used parenteral regimens for neuroborreliosis, several European studies support use of oral doxycycline in adults with meningitis, cranial neuritis, and radiculitis (Level , reserving parenteral regimens for patients with parenchymal CNS involvement, other severe neurologic symptomatology, or failure to respond to oral regimens. The number of children (≥8 years of age) enrolled in rigorous studies of oral vs parenteral regimens has been smaller, making conclusions less statistically compelling. However, all available data indicate results are comparable to those observed in adults. In contrast, there is no compelling evidence that prolonged treatment with antibiotics has any beneficial effect in post-Lyme syndrome (Level A).

Hi Lisa, I'm one of the people who has been diagnosed with both lyme and pots. I am currently back in treatment for babesia (2nd go around as I unfortunately relapsed). When I went through the first round of babesia treatment my pots symptoms improved greatly. I was able to stand 2-3x longer than before treatment, which was encouraging Now if only I could permanently get rid of the babesia!

I don't know much about how common MS and POTS together are, but there do seem to be a lot of people with lyme who were misdiagnosed with MS. Probably a good thing to get checked out if you're questioning it. Have you been to a lyme literate doctor?

On the beta blockers, I've found it helpful to split the pill in half and take 1/2 in the morning and 1/2 at bedtime.

Hope you find some answers

Pam

I think it's a separate issue. I was diagnosed with reactive arthritis, from a salmonella infection. Plus, I have joint pain from lyme disease. A rheumatologist is a good choice for figuring out the cause of your joint pain and finding the appropriate treatment.

good luck!

Congrats on returning to work!

I've always taken the path of telling people on a need to know basis. For example, at one of my previous jobs there were a lot of stairs, as we worked in an old building. My boss loved to take the stairs and I had to tell her something to explain why I would rather walk all the way to the other end of the building to take the elevator. When I did share, I simply said, I have a heart issue and don't do well with the stairs. No one has ever asked me to elaborate.

I agree with Karyn that bosses just want to know that you can do the job. I also don't want to be identified as a "sick" person at my job. I like to show that I can do the job, and then later if they do find out I have health issues, I'm still seen as a capable person who just has extra hurdles in life.

Hope everything works out for you :-)

Pam

Hi Lisa,

I've had shortness of breath off and on for many years. In the past year I was diagnosed with multiple tick borne infections and discovered that air hunger is one of the primary symptoms of babesia. With treatment, I've finally seen this symptom diminish.

Anyways, just wanted to chime in because I think in the past I was often too quick to assume my symptoms were 'just pots' and not pursue answers as to why they were occuring. I'd definitely recommend bringing it up to your doctor.

good luck,

Pam

Lukky, Thanks for the tip on the Rapunzel buillion cubes, I'll have to look for those. I did find some without gluten and soy but I think they still have MSG, so that'd be great to avoid that as well. Unfortunately my real reason for avoiding soy sauce is an allergy to soy I have already looked at Bragg's but it's still soy based... Soy sauce is one thing I really miss because I love sushi.

Lisa, That recipe sounds really good - thanks for posting! I think I can handle making that - lol

Thanks again!

Pam

Hi everyone!

Thanks so much for your responses Your soups all sound yummy! Rachel, I think I will try your soup this weekend. What a great idea to use V8 as a base!

Lukky, Onion and moroccan soups sound yummy, but I have to confess - I am the worst cook! You think soup can't be messed up, but trust me it can - lol I've unfortunately had a few mishaps, I seem to always add too much water, too many spices, etc, etc. So, if you have any recipes with specific instructions for those who are not so great in the kitchen - I'd appreciate it Also, what could I use in place of soy sauce? I've been struggling with replacing that condiment! As for grains, I tested borderline for having a gluten allergy, so I am trying to limit eating whole wheat, etc. I like quinoa a lot though

Emily, thanks for the suggestions on the canned soups. I might have to stock up on a few for those days when I don't feel like cooking. I did find a few soups I could eat from Trader Joe's, but unfortunately the ones I've tried haven't been that good - making me want to learn to be a better cook What your mom cooks sounds wonderful! And I never thought about rice noodles in chicken soup - yum, yum, definitely have missed the noodle soups a bit.

Thanks again everyone!

Pam

ps - Emily on the plaquenil - I herxed really badly on it too. I've heard it can increase the strength of your antibiotics, so maybe that is why? Or maybe it was killing the babs! Guess what I'll be taking next week - Mepron! UGH!!! I finally learned why I'm not feeling well lately - latest bloodwork shows babs and rocky mountain. I thought I was done with babs treatment, but unfortunately not quite yet

I've also had problems with insomnia for the last couple of years. Just recently I had my hormones checked and it was discovered that my progesterone was ridiculously low. I've started on a compounded progesterone cream and I have been sleeping really well since I started it. It's been a stressful month, so I feel like it is working Just hoping it continues.

Pam

Hi everyone!

I used to get a lot of my sodium from canned soups, but I've had to give them up with my new diet avoiding soy and egg, and carbs like pasta. So, I have started trying to make my own soups. Does anyone have any recipes they want to share? I'm especially interested in vegetarian and poultry based soups.

Thanks!

Pam

Here's a tip I have for lines - when I travel I always bring my wheeled suitcase as my carry-on bag, and when waiting in line I sit on it. That has worked really well for me in the past with getting through long lines. If the line is really not moving I'll often just sit indian style right on the floor Just wear pants you don't care about getting dirty

For the bathroom stuff, when you get to the terminal you could try talking to the flight attendants and ask for an aisle seat next to the bathroom. If you have time, I'd recommend getting a note from your doctor.

Have a wonderful trip!

Pam

Hi Amy,

Plaquenil is often used to keep inflammation down, but, as it is related to a drug that is used to treat malaria (the name escapes me at the moment...) it is also given for fighting babesia. What kind of pain pills are you taking? In addition to the plaquenil, I take zanaflex at night. Also, I was recently given a prescription for lidocaine patches. I primarily put them on my neck, but you can cut them up and place them anywhere you need them on your body. I like those because I haven't noticed any side effects Other than that, I find hot showers are a necessity in the morning to work out the stiffness, and sometimes at night if I'm really sore.

I started babesia treatment about a year and a half ago, and did that for about 8 months. After that I started lyme treatment. Since starting treatment, on my good days I can stand 2-3x times longer than I once could. I only wish this was consistent! I have started to be able to tolerate a little bit of exercise. And once or twice I forgot to take my beta blocker and made it through the day. I didn't feel well when this happened, but it was a big deal to me because before I wouldn't have survived 20 min without taking it - my heart raced like mad without it. So, overall I think I have had progress, but it is slow going and sometimes I don't see it when I am having bad days.

Hope this helps,

Pam

ps - Emily, you're quiet - you feeling ok?

Hi Emily, Massage gives me an awful herx reaction. Do you get that? I went for a facial a few months ago and the lady did a lot of massage with me during it. The next day or two I was exhausted and really sore - although it felt really good when she was doing it - lol! I asked my doc about it and she said that right now massage for me should be limited and very light. I think it can detox you, which should be a good thing, but only if your body can handle it.

I'll be interested to hear your experiences about massage

take care,

Pam

Hi Emily, Wow, I relate to a lot that you are saying. With lyme it's somewhat different than dealing with just POTS because with POTS when I'd feel badly I'd know I need to rest or cut back, etc. But with lyme you're supposed to feel bad, so you try to keep pushing forward, keep increasing the medication. But then after weeks, months of feeling badly you start to wonder - am I really getting better. And, it can sometimes be very hard to keep hope up as you go through treatment.

I'm in a similar boat right now, feeling awful, and not knowing exactly why. It's a hard choice on whether to continue treatment or just stay where you are.

Babesia treatment was really, really awful for me when I was on the mepron. If you feel anything like that - I'm really sorry. For about 3 months I felt really icky and toxic. After 3 months, I was switched to another medication and felt 100 times better. Mepron is really, really toxic stuff. I hear malarone is a little more tolerable, but I can still imagine it'd hit you hard.

Anyways, hang in there, I know it's hard. Feel free to send me a message if you need to vent more

Pam

ps - I'm impressed you can tolerate massage!

Hi Emily! Hope you are doing ok. It took me a long time to work up to the full plaquenil dose. I'm guessing it was between 2-3 months. To increase, I usually add in half a pill and see how I do. If I feel really badly from it, I'll wait until I feel better before I try it again. If I tolerate it ok, then I'll take another half the next day. I usually keep trying to do consecutive days, unless the side effects start getting worse. With certain medications that seems to be the only way I can get on them, because otherwise I won't function.

Just out of curiosity, do you have trouble getting off medications too? Cause I have to wean off just as slowly sometimes...

I think you really need to listen to your body - even if you are not taking what your doctor originally recommends. We are all so different in what we can tolerate. I usually tolerate what I can and then talk to my doctor about the symptoms I have when I increase the medication. A lot of times, she will tell me not to try to increase any further, so I never actually make it to the recommended dose. Guess I am also on the slow track

I wish I could tell you how long it took to really "kick in" with the pain, but I'm not entirely sure on that. I think at some point I looked back and realized I had a little more energy and less soreness than I usually had. So, it wasn't a big dramatic difference, more of a gradual overall effect.

Here's hoping the plaquenil starts to help you

Pam

ps - Malosp, that's interesting about the itching. Could you actually see a rash on your legs? I ask cause last week my toes were itching like crazy. It was maddening, yet nothing was physically wrong with them. Very strange.... After a few days they just stopped itching, and I still have no idea what caused it in the first place. For now, just happy it's gone