posted
My 14 year old daughter suffers from severe NMH. She is unable to attend school at all due to dizziness and weakness (she has other symptoms but I think if we could get her NMH under control she could manage the rest.)
Does anyone have NMH and feel that meds have helped?
Julia (my daughter) salts all her food and drinks a good ammount of Gatorade and water daily.
I did a search on the forums for Florinef ( a med her doc wants her to try ) but was surprosed to find only 2 search results. Aen't there alot of Lymies with NMH?
-------------------- ~Kristina~ Posts: 173 | From Long Island ~ New York | Registered: Mar 2003
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yes i have severe NMH - it's my most disabling lyme symptom - (i hope the link helped that DLL provided on one of my recent questions?)
NMH makes life so hard when you cant function in the upright position - sorry to hear your daughter has it too
I would highly recommend taking florinef - it changed my life around -it was only after taking this that i was able to start functioning semi normally!!! I take 0.1 mg at night plus increased salt & fluid intake + potassium (20meg) is essential whilst on florinef.
Florinef works by retaining the sodium in the body (stops the kidneys excreting it) -this increases BP - my BP went from 90/50 pre florinef to a normal 120/70 . BY retaining sodium, it also retains fluids so increases blood volume, so stops you feeling so faint when in upright position as more blood in head.
please mail me if you want any more help/advice on florinef,
Liz
Posts: 83 | From UK | Registered: Oct 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Yes, I have it. I was studied by Dr. Streeten in NY (deceased now) long before I knew I had lyme. He wrote this technical book for doctor's "Orthostatic Disorders of the Circulation: Mechanisms, Manifestations, and Treatment by David H.P. Streeten"
I also have orthostatic edema along with it which complicates the picture so my experience will be different than some who do not have the edema.
First, if your daughter has lyme, I would think twice before putting her on florinef since it is a cortisone and suppresses the immune system. According to Dr. B's treatment guidelines, cortisone is to be avoided if one has lyme.
I tried florinef and gained 35 pounds in less than 2 weeks and I was never able to get rid of it. It caused severe fluid retention and made me sicker. From what I've read, many if not most people do not have the fluid retention problem with it.
I take other meds for NMH but even on those I was unable to sit or stand much until I went on guaifenesin for fibromyalgia. Over the years, I've heard that others have noticed improvement in their NMH while on it also. I remain on the protocol even though it causes more pain for me. I'd rather be able to minimally function in the upright posture than have less pain.
I recently found out that guaifenesin was used to treat syphillis before antibiotics became available so perhaps this is why it works somewhat for lyme. I'm still very ill after being on the protocol for 6 years so it is not very effective for me other than the big help of being able to stand and sit a lot more than I could before. When I use products that block the action of guaifenesin for any period of time, I find myself needing to lay down most of the time. It's awful. I assume that proper treatment for lyme and/or co-infections will take care of the problem and I gather from my LLMD that he thinks so too.
In the meantime, there are other drugs that can help although as I said, I did not find that they were extremely helpful until I went on the guaifenesin protocol. They are drugs that constrict the blood vessels such as dexedrine or midodrine. Also atenolol for the tachycardia. I take 25 mg per day of atenolol.
Drinking lots of water and using sea salt are helpful. Staying out of warm temps and not overdoing it are also helpful. Dr. Streeten's research showed that some people do get better as they age. I suspect that does not apply to people with an on-going infection though.
I'm not suggesting that she go on the guaifenesin protocol but honestly, that is the only thing that really helped me enough to allow me to be able to sit and stand long enough to do much of anything but it is not ideal due to the difficulty of following the protocol and for many people, increased pain initially which eventually gets better for many people. My pain levels increased but never got better or even went back to where they were pre-guai but I think that is not the majority of results that I've heard about.
If you want more info on guaifenesin, feel free to PM me.
BTW - I saw a naturopathic doctor yesterday who feels that she can get me off the guaifenesin protocol - meaning that she can help treat the orthostatic hypotension via other means than guaifenesin. She is very knowledgable and has lyme herself so she could be right.
I hope your daughter gets some relief. It is miserable when you can't even sit up for a few minutes without extreme fatigue. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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posted
This is from Dr B's Guidelines that might help:
"OTHER OPTIONAL SUPPLEMENTS CREATINE Creatine has been shown to be of benefit in neuromuscular degenerative diseases such as Lou Gherig's Disease (ALS) and can be very helpful in supporting low blood pressure, as in NMH. It may also benefit strength, stamina, and heart function. Important: To use this safely, you must have an adequate fluid intake. The creatine product should contain taurine, an amino acid needed to enhance creatine absorption, plus some carbohydrate to aid creatine entry into muscle. You will need a 20 gram loading dose for the first five days, then 4 to 10 grams daily maintenance. Try "Cell Tech" from the Vitamin Shop, and follow label"
quote:Originally posted by TerryK: if your daughter has lyme, I would think twice before putting her on florinef since it is a cortisone and suppresses the immune system. According to Dr. B's treatment guidelines, cortisone is to be avoided if one has lyme.
i just wanted to add that i am a patient of Dr B & he prescribed me florinef. its a different form of steroid to cortisone (cortef) & can be used bt lymies
Posts: 83 | From UK | Registered: Oct 2005
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Liz wrote: i just wanted to add that i am a patient of Dr B & he prescribed me florinef. its a different form of steroid to cortisone (cortef) & can be used bt lymies
Thanks Liz! I see you are from the UK - are we talking about the same Dr. B? The one from NY?
Anyway, now I'm really confused because everything I've read about this drug say's that it is a steriod and that it supresses the immune system. Perhaps it doesn't suppress the immune system as much as other steriods because it is steriod-like??
http://www.drugs.com/cons/Fludrocortisone.html Under "Other medical problems-The presence of other medical problems may affect the use of fludrocortisone. Make sure you tell your doctor if you have any other medical problems, especially:
Ulcers in the stomach or intestines-Fludrocortisone suppresses the immune system. Infections with these conditions may be made worse by this suppression."
Medline states the same thing. Anyway, thanks for bringing this up Liz. Stardanzer - I would suggest that it's best to check with your daughter's doctor to see if he/she thinks it supresses the immune system and then make a decision for yourself.
Liz - I want to respond to your PM but your box is full. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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quote:Originally posted by TerryK: Thanks Liz! I see you are from the UK - are we talking about the same Dr. B? The one from NY?
Yes this is the Dr B on Long island, NY. i am from UK but travel your way for treatment to see the experts!!
Dr B had no hesitation in prescribing me florinef & advised me to keep taking it for as long as i felt i needed it- so it obviously has no harm for lymies & it has helped me loads
just emptied my PM box -thanks for reminder Terry!
Posts: 83 | From UK | Registered: Oct 2005
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posted
That's good Liz, but there isn't any reason why Florinef would be any better than Cortef They are both steroids. Neither one would be a problem as long as they are taken in small physiological doses for replacement of cortisol that is not being produced by exhausted adrenal glands. The danger is using them in large doses that suppress the immune system. The small replacement doses don't do this.
-------------------- You're only a failure when you stop trying. Posts: 945 | From U.S | Registered: Oct 2004
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WildCondor
Unregistered
posted
What Liz wrote is correct. I was on the same protocol with Florinef...helped me very much. When you have the tilt table test, the results help determine which meds you can go on to contrl the symptoms of NMH. Some folks have just the hypotension, and some, like me have hypotension plus cardiogenic reaction and rapid heart rate. I used Atenolol, florinef, and zoloft which also helps hypotension. Increasing salt is a good idea and it is essential to increase fluid intake....lots of water!
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quote:Originally posted by Lymetoo: There ARE quite a few Lyme patients who have NMH. Check this link for more info on NMH. "Wild Condor" has it herself.
quote:Originally posted by liz dobell: HI Kristina,
yes i have severe NMH - it's my most disabling lyme symptom - (i hope the link helped that DLL provided on one of my recent questions?)
NMH makes life so hard when you cant function in the upright position - sorry to hear your daughter has it too
I would highly recommend taking florinef - it changed my life around -it was only after taking this that i was able to start functioning semi normally!!! I take 0.1 mg at night plus increased salt & fluid intake + potassium (20meg) is essential whilst on florinef.
Florinef works by retaining the sodium in the body (stops the kidneys excreting it) -this increases BP - my BP went from 90/50 pre florinef to a normal 120/70 . BY retaining sodium, it also retains fluids so increases blood volume, so stops you feeling so faint when in upright position as more blood in head.
please mail me if you want any more help/advice on florinef,
Liz
Wow! Great to hear that you are doing so much better on the Florinef. I am trying to convince my daughter to try it but she is afraid of taking meds (she always says I never have to worry about her doing street drugs because she is afraid to even take Tylenol! Which I guess is a good thing...LOL)
Can I ask, did you have a positive Tilt? Julia passed out within 4 minutes of being upright on the Tilt Test. No wonder the poor kid can't function in day to day life! You have tobe able to be upright in order to do just about anything. Prior to her Lyme diagnosis she was diagnosed with CFIDS and NMH. We had seen many specialists in the NYC area and she was prescribed many drugs. But, at the time, she always felt that she was feeling well enough to function so I didn't push the meds on her. Now though... she's not even able to go to school. So, it's time to get something going that might help.
Is your potassium a prescription or OTC?
My concern about Florinef is that it can exacerbate psychiatric problems. Julia's therapist and psychiatrist did a psyche screening and feel she is Bipolar. I am not so sure. I think she's just a 14 year old girl who's had way too much of her life taken away by feeling like crap and nobody (except me) really believing she is sick. But, of course, the psych is upset with me that I didn't put her on Abilify (an antipsyshotic/mood stabilizer with the lovely side effect of NMH! amoung other horrible things)and so I have this nagging fear that starting her on Florinef may send her over the psychological edge so to speak....
-------------------- ~Kristina~ Posts: 173 | From Long Island ~ New York | Registered: Mar 2003
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First, if your daughter has lyme, I would think twice before putting her on florinef since it is a cortisone and suppresses the immune system. According to Dr. B's treatment guidelines, cortisone is to be avoided if one has lyme.
I have been ill and on disability for 20+ years. My worst most disabling symptom was my NMH and POTS. I was wheelchair bound and hospitalized on many occassions. I was lucky to live in the same town as Dr B and he was my regular doc long before he became a Lyme doc. He had me on Florinef for years even with the Lyme diagnosis. I personally never saw an improvement on it though.
Also, Julia is seeing a renowned pediatric LLMD in CT. He is the one prescribing the Florinef. I doubt that it really has detrimental effects on the Lyme. I don't beleive it is the same type of steroid.
-------------------- ~Kristina~ Posts: 173 | From Long Island ~ New York | Registered: Mar 2003
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quote:Originally posted by micul: This is from Dr B's Guidelines that might help:
"OTHER OPTIONAL SUPPLEMENTS CREATINE Creatine has been shown to be of benefit in neuromuscular degenerative diseases such as Lou Gherig's Disease (ALS) and can be very helpful in supporting low blood pressure, as in NMH. It may also benefit strength, stamina, and heart function. Important: To use this safely, you must have an adequate fluid intake. The creatine product should contain taurine, an amino acid needed to enhance creatine absorption, plus some carbohydrate to aid creatine entry into muscle. You will need a 20 gram loading dose for the first five days, then 4 to 10 grams daily maintenance. Try "Cell Tech" from the Vitamin Shop, and follow label"
Aaaaah! Creatinme! Yes, I was on that also! I didn't take it for the NMH though. I believe it was more of a muscle builder type thing as I was having widespread full body twitching. I will look into the creatine! Thank you!!!!!
-------------------- ~Kristina~ Posts: 173 | From Long Island ~ New York | Registered: Mar 2003
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quote:Originally posted by WildCondor: What Liz wrote is correct. I was on the same protocol with Florinef...helped me very much. When you have the tilt table test, the results help determine which meds you can go on to contrl the symptoms of NMH. Some folks have just the hypotension, and some, like me have hypotension plus cardiogenic reaction and rapid heart rate. I used Atenolol, florinef, and zoloft which also helps hypotension. Increasing salt is a good idea and it is essential to increase fluid intake....lots of water!
Thanks sweetie. That's so cool that the Florinef helps you. Julia had the Tilt Test with Dr. Dr Julian Stewart He was great and very thorough and really funny to boot! Mainly though he is a researcher and we didn't have much follow up as far as treatments. He did suggest Midrodine. But Julia got scared because he said I would have to take her BP every day to make sure it didn't get to high. Like I said above, at that point in time she decided she could live with her symptoms. But now, it's a different story.
Julia does not have the rapid heart rate. In fact, during the tilt her BP and her HR dropped both below 40 within 4 minutes!
-------------------- ~Kristina~ Posts: 173 | From Long Island ~ New York | Registered: Mar 2003
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
Hmmm... well, it's good to know that some steroids are not a problem for some lymies but I will avoid them personally since more than a few here have mentioned the dire results they've gotten with even subcutaneous shots, others seem to have done fine.
A doctor I saw yesterday said that she was getting steroid shots because she was going blind. She didn't know she had lyme at the time. She said she didn't take high doses though. Eventually figured out it was lyme and is better now, in remission. Maybe it depends on the person as to how well they can tolerate steroids. Here is one thread where a person said one shot to the knee activated latent lyme - read to the end. http://flash.lymenet.org/scripts/ultimatebb.cgi?ubb=get_topic;f=1;t=048492
Stardanzer, sorry you didn't get any improvement with florinef.:-( I hope your NMH is all better via lyme treatment and thus you can expect your daughter to also be cured. Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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quote:Originally posted by Stardantzer: Can I ask, did you have a positive Tilt?
Is your potassium a prescription or OTC?
My concern about Florinef is that it can exacerbate psychiatric problems.
Hi again Kristina,
no i never had a tilt table test as my LLMD didnt want to subject me to that when it was obvious from my symptoms that i had NMH & POTS
Potassium is prescription 20meg/day
I i never had any adverse reactions to florinef & no noted psychiatric symptoms - it only made me so much better - it turned my life around. but i guess everyone can react differently to meds??
I hope your daughter had some success with treatment,
best wishes, Liz
Posts: 83 | From UK | Registered: Oct 2005
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posted
NMH was one of my most disabling symptoms as were psychiatric symptoms before lyme dx.
I tested positive on the tilt table test and started florinef. It made a huge positive difference for me. I also take in lots of salt and fluids, avoid stress as much as possible, supplement with potassium and avoid getting over heated.
I take a low dose of florinef, just enough to keep me upright and minimize negative side effects, but my bp is still on the low side. I try to get it higher by natural means. Dose will vary for each individual.
This symptom is improving with continued treatment for lyme and babesia (tested + for lyme, - for babs).
Good luck.
Posts: 925 | From California | Registered: Sep 2004
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arg82
Frequent Contributor (1K+ posts)
Member # 161
posted
I have NMH, too. I was diagnosed with a TTT after years of having symptoms but no doctor taking it seriously (this mainly started after being diagnosed with Lyme). After being diagnosed I was put on a beta blocker which didn't help and then florinef which didn't help either (my LLMD assured me that florinef is safe to take since it's not the same kind of steroid that will cause Lyme problems).
So, now I'm on daily IV hydration which I've been doing for about a year and a half and it's helped a ton. BUT, it's not a standard treatment for NMH and is controversial. It's something you can go to if you've tried all the "standard" treatments (like florinef, beta blockers, and midrodrine) but really shouldn't be a first treatment.
If your daughter doesn't already know about it, there's a wonderful online group for young people (26 years old and younger but mostly teenagers and pre-teens) called DYNA - Dysautonomia Youth Network of America. You can see the main website here and there's info there about how to join the group. It's really wonderful and there's a parents forum as well that you might find helpful. It's not just for medical discussions but really a support system where you can talk about anything you need to.
AliG
Frequent Contributor (1K+ posts)
Member # 9734
posted
upsy daisy
-------------------- Note: I'm NOT a medical professional. The information I share is from my own personal research and experience. Please do not construe anything I share as medical advice, which should only be obtained from a licensed medical practitioner. Posts: 4881 | From Middlesex County, NJ | Registered: Jul 2006
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