posted
I have been on treatments for lyme and coinfections for 2 years now. It seems like every time I feel like I am making progress, I am hit with something else. My worst symptoms are heart related and cause me a lot of worry. I am on Toprol to keep my heart rate under 100, I get skipped beats, can't stand long, air hunger... they all seem to be related.
In December, I started on doxycycline, which seemed to help. In fact, despite the fact that I was only on 20mg twice a day, I seemed to be making progress. I was feeling better than I had in more than a year. Then I added Mepron to try to treat babs. Again, I stayed on a low dose. I tolerated it well for 2 weeks and then BOOM!
I felt like I had a bad cold, insomnia, skipped beats. It felt like I was back to square one. I have gone off the mepron and the doxy, but things are not improving and it has been 2 weeks now. I have read a little about POTS and it kind of sounds like the way I feel. I have a really hard time being on my feet. It makes my heart rate go up and want to skip beats.
I don't know what to do. I don't know if I should stay off my meds, go back on them... I don't know why I can't seem to make progress towards feeling better. Anyone have a similar experience? What worked for you? Any help would be greatly appreciated. Thanks
Posts: 24 | From East Coast | Registered: Feb 2006
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posted
I have bart/lyme/babs and had horrible POTS. It is much better with traetment. My LLMD didn't want me to go on a betablocker, because we couldn't gage how effective the treatment was.
As I treated all 3, it's gotten better. When I first got sick-I could walk for @ 5 minutes. Now I can do a 3 mile walk.
One thing that really helped was taking adrenal support and B12, drinking ALOT of water with salt.
It gets better with time.
Posts: 561 | From eastcoast | Registered: Aug 2006
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Hoosiers51
Frequent Contributor (1K+ posts)
Member # 15759
posted
My advice to you is to not stop your lyme and babesia treatment. I know other people with these POTS issues cannot handle high doses of any type of medication.
Even if you do baby doses, at least it's something. It sounds like you certainly do have tick diseases and if you do, they need to be treated.
I hope the best for you. Listen to your body, but don't discount the Lyme and babesia, please!
POTS can be genetic, and is actually fairly common in the population (depending on how you define common). You may have the bad genes, or whatever, but you aren't doing your POTS any favors by allowing your body to have Lyme!
I have POTS. Who knows, the symptoms might not have even shown up without the Lyme, babs, etc. That's how I look at it.
Also, I am on the beta-blocker Pindolol for my POTS, and it has given me more energy and helped my mood a lot! I started very very low, I was splitting pills in fourths, but now I take 2 pills three times a day!
Good luck!
Posts: 4590 | From Midwest | Registered: Jun 2008
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cactus
Frequent Contributor (1K+ posts)
Member # 7347
posted
Did you have the POTS type symptoms prior to LD and the other tick-borne diseases?
My LLMD finds that it is very common for patients with chronic infections to develop POTS.
I have POTS, too, and did not develop it till farther into my treatment, about the time my bartonella symptoms started raging. So my LLMD thinks, in my case, it's related to bart.
Increase your fluids, increase salt intake, and adrenal support help some.
All that aside, I think it's important that if you have Lyme & babs to treat them. I had terrible air hunger while treating babs, and some of the symptoms you are describing. Treatment definitely helped with that.
Call your LLMD about the meds, and at your next appt ask to be evaluated for POTS, too.
Hope you feel better soon.
-------------------- �Did you ever stop to think, and forget to start again?� - A.A. Milne Posts: 1987 | From No. VA | Registered: May 2005
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Alv
Unregistered
posted
Bart and only bart....I treated it for 14 month and finaly my heart is very rare bothering me ...very rare...
My son chased BABS( based on his LLMD) and just started bart treatment ...and he has a alot of symtoms of heart...problems and skipping heart bit...
On my case I chase bart first more than any other coinfections.
I chased bart more than Babs and heart improved.BART LOVES the HEART! I am not saying babs does not agrevate things but BART causes more damages...in heart tissues.
BART HERXES to me were like heart atack when I have been on high dosages to treat bart.
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sixgoofykids
Honored Contributor (10K+ posts)
Member # 11141
posted
It sounds like a couple weeks into treatment with Mepron, you started to herx. I would not stop the meds.
I would also talk to your LLMD about it.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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posted
I am in agreement with everyone here.......ANY TBI can cause cardiac issues. Chronic illness can cause adrenal fatigue (as can chronic stress), and this can also cause cardiac issues.
I would contact your Dr, but don't know that I would go off treatment. Even if you have to take very low doses......I generally take around half the dosage of meds that many Lymies do because my body doesn't tolerate the herxes at all, and I can't stand for my heart to act up.
Before I was dx'd, I could literally sit up in the bed and my pulse would sometimes hit 180 and I would pass out. Now keep in mind that while this was going on my BP was 100/60 or so most of the time....and would drop when I stood up as my pulse would rise AKA POTS!
I am on a beta blocker, and have been told that I may be on it forever due to permanent damage......however, like I said before I started treatment (Oct 07), I couldn't even walk to the mailbox, and most days now I do pretty well.
One thing that hasn't been mentioned that has helped me a lot along with the salt is magnesium citrate.....
Those of you doing adrenal support, what in particular are you taking? I tried the steroid route with no success and have been taking supplements to help with it. I know there are "adrenal blends, " specifically from Dr. W in Arizona.......are any of you taking those?
-------------------- TL Posts: 365 | From OK | Registered: Jul 2007
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posted
My heart problems are definitely related to bartonella. They are different from yours, but I do have POTS and treatment for bartonella has helped.
I recommend you do a trial of Levaquin, Cipro, or Rifampin. I was also monitoring my heart rate before bart treatment, and in general I have a lot less tachycardia than I did before bart treatment.
Though bart, babs, and Lyme all cause heart problems, bart is particularly cardioaffinitive. You might also want to test for rarer coinfections such as Tularemia and Q Fever -- these too can cause cardiac problems.
I'm still treating though, and my heart is not better, but improved.
Posts: 929 | From Massachusetts | Registered: Oct 2007
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posted
Many thanks to all who have replied. It is so nice to know there are others out there going through the same thing I am and that there is hope for progress.
To answer a few questions, the POTS symptoms did not start until I had been on Ketek for 3 months. Ketek was the first antibiotic that I was given for Lyme. So, I definitely think that it is related to the Lyme or a coinfection somehow and I am hoping that it will get better with treatment. It may just be a matter of finding the right treatment. I did try my LLMD today, but he is out of town this week. So, I will have to wait until then to find out what he recommends. Most of the meds that I have taken have been to target Lyme and now babesia. So, it is possible that bartonella is part of the problem. I probably do need to target it at some point.
I also have a few questions about some of the recommendations.
Adrenal support was mentioned by a few people as helping with the POTS symptoms. What does that involve? Can anyone recommend something good to me?
Also, many people recommended lots of water and salt. I do try to stay hydrated because I know that is a problem for me. What is the best way to get more salt? Are we talking adding more table salt to food? Eating more salty foods? Taking supplements?
I am already supplementing magnesium citrate a little. How much does it take to see improvement?
It sounds like I need to try to get back on the meds even if it is at very low levels. I guess I never know what to do when I hit what I think is a herx. The two LLMD's that I have seen have both told me that it is better to go off temporarily for a herx and then get back on them when I start feeling better. The problem is that often I never do start feeling better after a "herx." I go off my meds because I am feeling poorly and I just continue to feel poorly. This is all so confusing.
Thanks so much for the input though. It helps!
Posts: 24 | From East Coast | Registered: Feb 2006
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posted
As far as the salt goes, my Dr. has me doing 1/2 tsp of Celtic Sea Salt in the am in water, and additional salting of my food with the sea salt to taste.
This took some getting used too; my ex-husband had a terminal heart condition, so we didn't even keep salt in the house....so I had not really eaten salt in any decent amount in many years.
Many people who have adrenal fatigue actually crave salt; it is one of the diagnostic tools. I had MAJOR salt cravings for the few months prior to being diagnosed with adrenal issues.
I take Natural Calm, a water soluble form of magnesium citrate.....615mg/day.
-------------------- TL Posts: 365 | From OK | Registered: Jul 2007
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Neurally mediated hypotension (NMH) is not uncommon. Symptoms can include palpitations, lightheadedness and shakiness especially after exertion and prolonged standing, heat intolerance, dizziness, fainting (or near fainting), and an unavoidable need to sit or lie down. It is often confused with hypoglycemia, which it mimics. NMH can result from autonomic neuropathy and endocrine dyscrasias. If NMH is present, treatment can dramatically lessen fatigue, palpitations and wooziness, and increase stamina. NMH is diagnosed by tilt table testing. This test should be done by a cardiologist and include Isuprel challenge. This will demonstrate not only if NMH is present, but also the relative contributions of hypovolemia and sympathetic dysfunction. Immediate supportive therapy is based on blood volume expansion (increased sodium and fluid intake and possibly Florinef plus potassium). If not sufficient, beta blockade may be added based on response to the Isuprel challenge. The long term solution involves restoring proper hormone levels and treating the Lyme to address this and the autonomic dysfunction.
Posts: 789 | From CT, | Registered: Jun 2006
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gemofnj
Frequent Contributor (1K+ posts)
Member # 15551
posted
Hi Everyone,
What are POTS?
Posts: 1127 | From atlantic city, nj | Registered: May 2008
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Get a Tilt table test!!!! It's the only way to find out what you are dealing with!
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bejoy
Frequent Contributor (1K+ posts)
Member # 11129
posted
I agree about the magnesium. When I used to get palps I'd take an additional capsule and the symptoms would subside in about a half an hour.
You might want to see somebody about adrenal support. A compounding pharmacy can tell you which doctors in your area treat adrenal issues.
-------------------- bejoy!
"Do not go where the path may lead; go instead where there is no path and leave a trail." -Ralph Waldo Emerson Posts: 1918 | From Alive and Well! | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
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While some (many?) cases of CFS might be undiagnosed lyme, this information may be helpful to patients across the board.
Abnormal impedance cardiography predicts symptom severity in chronic fatigue syndrome
Journal: Am J Med Sci. 2003 Aug;326(2):55-60.__Authors: Peckerman A, LaManca JJ, Dahl KA, Chemitiganti R, Qureishi B, Natelson BH.__
Affiliation: Department of Neurosciences, CFS Cooperative Research Center, University of Medicine and Dentistry of New Jersey, Newark, NJ, USA.
NLM Citation: PMID: 12920435_
BACKGROUND: Findings indicative of a problem with circulation have been reported in patients with chronic fatigue syndrome (CFS). We examined this possibility by measuring the patient's cardiac output and assessing its relation to presenting symptoms.
METHODS: Impedance cardiography and symptom data were collected from 38 patients with CFS grouped into cases with severe (n = 18) and less severe (n = 20) illness and compared with those from 27 matched, sedentary control subjects.
RESULTS: The patients with severe CFS had significantly lower stroke volume and cardiac output than the controls and less ill patients.
Postexertional fatigue and flu-like symptoms of infection differentiated the patients with severe CFS from those with less severe CFS (88.5% concordance) and were predictive (R2 = 0.46, P < 0.0002) of lower cardiac output. In contrast, neuropsychiatric symptoms showed no specific association with cardiac output.
CONCLUSIONS: These results provide a preliminary indication of reduced circulation in patients with severe CFS. Further research is needed to confirm this finding and to define its clinical implications and pathogenetic mechanisms._
- Link to full article at PDF. , . or Google first half of title for other formats
Cardiac Insufficiency Hypothesis - article and many links, including to: Pittler MH, Schmidt K, Ernst E., Hawthorn extract for treating chronic heart failure: meta-analysis of randomized trials. Am J Med. 2003 Jun 1;114(8):665-74. [PDF Format]
Video: A three-hour talk by Dr. Cheney on diastolic cardiomyopathy and ME/CFS.
CFS and Diastolic Cardiomyopathy - Paul Cheney, M.D., Ph.D.
===================
New Research on Cardiac Insufficiency
several articles
There is new research from a New Jersey team, authored by Doctors Arnold Peckerman, Benjamin Natelson et al.,
which found left-ventricular dysfunction following exertion and orthostatic stress in patients with myalgic encephalomyelitis/chronic fatigue syndrome.
The WedMD article and the press release are available at the link below. In an NIH-funded study on impedance cardiography also linked below, Peckerman and Natelson found that low cardiac output correlated with symptom severity in ME/CFS.
Dr. A. Martin Lerner . . . Viral infection persists in the heart, causing left-ventricular dysfunction, producing exercise intolerance. Exercise, in turn, worsens the cardiac dysfunction. . . .
More recently, physicist, physician, long-time ME/CFS researcher and clinician, and heart-transplant recipient Paul Cheney, M.D., Ph.D., has offered an alternative theory
that a subset of ME/CFS patients suffer from a diastolic cardiomyopathy, a problem with ventricular filling resulting from mitochondrial dysfunction and low ATP energy in the heart.
=====================================
Again, presented not to sadden, but if there is a dysfunction, treatment for underlying causes and employing support measures can make a difference.
While treating underlying infection(s) may resolve the symptoms, along the way, if this pattern is evident, the information here may help with safety.
the link to the Hawthorn research above holds hope. I feel so much better when I take that.
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