he is PRO natural methods or antibiotics- so i chose to start with samento and parsley- already rethinking it but anyway
he orderd heavy metal testing along with ALOT of other tests- will be about 17 vials of blood when i have it done- has anyone else had this much done at once with very low blood pressure?
he wants me off the florinef and recommends the tilt table test instead of stress test- scared of either one at this point
he thinks the nephrologist wasn't thourough enough about my protein in the urine thing- but today it only showed a trace amount so i'm hoping with drinking enough water this will improve
he will coordinate a visit for me with a neurologist that's lyme literate over there- really liked that
gave me a list of supplements- says its very expenisive to treat viruses but will check titers to see if the levels are rising- says the drugs used to treat viruses have a lot of side effects too
says if i have a parasitic issue an infectious disease doc will have to treat it- not him
these are the things he prescribed in addition to samento and parsley- Nystatin for candidia, flexioril (trying to read script- hope that is is spelled right) and efflexor
BIG question how much blood is safe to draw from someone with neuro hyptotension??
Has anyone had the tilt table test done? is it necessary?
Posts: 116 | From Texas | Registered: Dec 2009
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posted
positive notes- he was very thorough- answered all questions was patient with my baby crying in the room...staff was nice, office was nice...
Posts: 116 | From Texas | Registered: Dec 2009
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lymednva
Frequent Contributor (1K+ posts)
Member # 9098
posted
It took me weeks to recover from a tilt table test. I think there are other ways of ascertaining a patient's needs that are not as difficult on us.
My LLMD has presented to ILADS conference on this very topic. I wish more had paid attention! How does he propose to handle your NMH?
Check out www.ndrf.org for more info on dysautonomia.
-------------------- Lymednva Posts: 2407 | From over the river and through the woods | Registered: Apr 2006
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posted
That's all i need to hear screw the test...lol, he didn't say i needed to do it- i actually brought it up and he just said okay and gave me info to read about it
His solution to my NMH is to drink tons of water, eat some salt, and KILL bugs. not bad really-
except i really would like to hear feedback on the amount of bloodwork he ordered-
it's all really good stuff- hepititis c, b, all the co infections, babs, bart, mycoplasm, cytoplasm, is going to re check my EBV and Cytomega titers
heavy metal testing, and on and on. but i just wonder if my body will be able to function without 17 vials of blood...what if i pass out or my body goes into shock or something?
gee i'm a nervious wreck! lol
Posts: 116 | From Texas | Registered: Dec 2009
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Tincup
Honored Contributor (10K+ posts)
Member # 5829
posted
For my NMH I was told to eat a pickle every day.
posted
That one made me chuckle! thanks
Posts: 116 | From Texas | Registered: Dec 2009
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- As you were planning to do, did you confirm the appointment for that local LLMD on the 16th?
You might consider startling slowly on the Samento. I'm sure he told you that, though.
Because of how these affected me, if it were me, I would wait on all pharmaceuticals (flexoril and effexor) until you compare the treatment plan proposed by the other doctor you plan to see.
There are some supplements with far less side effects - magnesium, especially. What is the dose of magnesium and fish oil he wants you to take? Those are pretty standard and can make a huge different in both pain and mood.
Is the distant LLMD ILADS-educated? Is he planning to use antibiotics in the near future? Would samento just be a start or would he rely on that as a primary part for the plan? I have concerns if he thinks samento is to the the major piece.
However, he said that it's expensive to treat viruses. If he's knowledgeable about supplements, did he mention the use of allicin and andrographis? They can help with viruses.
What about testing for the other TICK-borne infections?
Is the local LLMD you are still planning to consult ILADS-educated? -
Posts: 48021 | From Tree House | Registered: Jul 2007
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posted
Hi keebler, yes he would be doing abx if i wanted- he asked which i would like to start with and i said cowden- he also knows about chinese herbs
He goes to ILADS meetings and is on betty's list.
He is testing for EVERYTHING under the sun! that is why i'm worried about the amount of blood that will be coming out of me.
ALL co infections, virus titers, hep b and c, babesia, bart, elchi (can't spell), mycoplasma,rocky mt spt fever, some other fever
The local doc treats until well- she was on another list from a forum i'm on- plus the support group leader here in my city sees her
I do still plan to go to the appt and compare treatment plans...
Keebler what do you think about me having SO much blood drawn? i swear it's like 20 different things- all important, including urine test for heavy metals but still ALOT of blood
Posts: 116 | From Texas | Registered: Dec 2009
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posted
no he doesn't see samento as the "big piece". just said it's okay if i want to start with and has lists on abx he treats with and what they each interact with etc...
He did give me a supplement list- and magnesium and fish oil are on it along with coq10 and probiotics etc... he did say the mag would help and is on the list of blood work
other bloodwork he is checking- magnesium, b12, copper, zinc, thyroid and another cbc
Posts: 116 | From Texas | Registered: Dec 2009
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posted
He told me i could take mag till i get diarrea and then i would know it was too much
also told me i could take Vit C, but i told him i think garlic contributed to my low blood pressure so maybe that's why he didn't bring it up
I was doing HEAVY garlic for a while b/c of the good things i've read about it-
When i look at the list later i will post how much of each thing it says to take- i know green tea extract was on there too
I didn't know andrographics was good for viruses- that's very helpful thank you- i have heard people say it helps them but didn't know it was good specifically for viruses
all i'm wondering at this point is am i safe to do all the bloodwork he wants? It all seems very important, but it seems like he's seen worse hypotension
he did a phyiscal on me to check my neuro stuff- like had me close my eyes and stand with feet together and then walk foot to foot to check my balance.
Posts: 116 | From Texas | Registered: Dec 2009
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seekhelp
Frequent Contributor (5K+ posts)
Member # 15067
posted
I've had 17-20 vials of blood taken at one time - no big deal.
Posts: 7545 | From The 5th Dimension - The Twilight Zone | Registered: Mar 2008
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TerryK
Frequent Contributor (5K+ posts)
Member # 8552
posted
I have dysautonomia with a low blood volume due to low red blood cell mass. Last we checked, my blood volume was 60% of a normal volume.
I had a large number of tests done when I first went to my LLMD for evaluation but not 17 vials. I had probably 12 vials and I had to stay down afterwards for about an hour.
I discussed my blood draw in detail with the lab before I went. That really helped a lot I would divide the testng. Do 1/2 now and 1/2 in a week. Have a lab tech help with coordination of what needs to be done together etc..
If you suddenly start drinking lots of water before your appointment you may actually lose fluid as it seems the body starts trying to let go of fluid if it thinks you have too much. OTOH, make sure you are hydrated.
Terry
Posts: 6286 | From Oregon | Registered: Jan 2006
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- Did he say it would be that many vials? Many tests can often be done from one vial so the number of vials is usually smaller than the number of tests.
TerryK gave you good advice.
I can rest better knowing that he is is ILADS-educated and attends their educational gatherings, etc. and that he will treat with abx (antibiotics).
You can search at Google and also at past threads here for your Rx names. Samento (not to be confused with regular Cat's Claw as since it is TOA-free it is not longer to be call Cat's Claw and does not have the same properties as the regular Cat's Claw).
I wasted a year of my life waiting for Samento to save the day. Two friends of mine, the same. I could never find any third party research on it - still, once in a while someone does great on it. Overall, for most, it should never be relied upon as the main ticket. So I am glad to see that the distant LLMD can expand the plan once he gets more information.
For the Rx for flexoril (sp?) and Effexor - some may do fine but some have had problems with these. Effexor destroyed my love of music by starting hyperacusis. Sure lyme contributes to that and other Rx as well, but I'd not been on any lyme treatment.
Of any drug I've ever taken, I'd give everything if I could back up and never start Effexor. Even for just a very short time, and at a very low dose, it ruined so much that I loved about life: the ability to enjoy music and even being with friends, hearing them talk. It can have profound effects on the auditory nerves.
Some doctor thought all I needed was Effexor to bump up my mood (of course I was exhausted and depressed: I had 3 undx brain infections!).
Effexor destroyed my ears by making my brain and ears far too sensitive to even the slightest sound. That was 1994. No relief since. And it really caused me to be quite agitated. I wanted out of my skin, the buzz that gave was so strong.
I was not able to tolerate Flexeril at all, either.
I found other things that worked far better without having to do the strong pharmaceuticals. But it took me a very long time to figure all that out.
================
After you search Google and PubMed, here's the link to search subjects in past threads
Dry mouth was the least of the irritating side-effects I had from Flexeril (and other drugs, too). Dry mouth can set you up for gum disease big time. I lost lots of tissue around my teeth due to that.
Dry mouth allow bacteria to have a party and bore though all the tissue and bone they want. This can also lead to heart disease.
Again, had I known then what I know now, I would have never taken any drug that caused dry mouth. When you sleep, bacteria have a field day.
=======================
Wiki is just a start to learning. It's not great for all their topics but they do a pretty good job with laying out pros and cons of basic drugs. The actual lay-out is far easier to read than at other sites.
. . . Common side-effects include drowsiness, depression, headaches, severe dizziness, and blurred vision. Other side-effects are respiratory depression and decreased functionality in various muscles. Long-term use has been associated with vision damage.
Another side-effect is dryness of the mouth.[5] Agitation is a common side-effect observed especially in the elderly.[6]
Because of potential for more severe side effects, this drug is on the list to avoid in the elderly.
- See the Common side effects list . . . (but note it comes from the mfgr., not from after marketing which should also have been considered)
======================
Now, after all this, I must state that due to my experiences, unless a drug is specially to work directly at a problem, I avoid it. I've NEVER had even a trace of help from any antidepressant, but rather, quite the opposite. I am not alone. Many have bad reactions and can be damaged by drugs that are supposed to help.
However, we are all different and some people are helped in varying degrees.
I just don't understand why a doctor would start with drugs that had the potential for harm when they don't even address the actual cause of the problem. When you start with magnesium and fish oil, they symptoms for which these Rx were prescribed may subside substantially.
I don't think Samento will be nearly enough to treat lyme. Antibiotics with supportive herbs are usually the approach that works for most. But, I can see you still have lab work out so your lyme attack plan is on hold.
I truly don't want to be discouraging and this doctor may well turn out to be effective treating lyme.
He may have prescribed the secondary Rx to give you some quick relief and he may have planned for those to be very short term. So I don't have all the details. And I don't need them. You'd read up on everything before taking it anyway, right?
I am glad that you have the local LLMD's appt. set in 2 weeks so that you have some choice.
I do hope others come and comment and that you have the very best of luck in your journey.
-
[ 12-31-2009, 02:00 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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sutherngrl
Frequent Contributor (1K+ posts)
Member # 16270
posted
Effexor made me sooo ill. I can't use antidepressants. However, some ppl do use them and seem to benefit from them. Many of us have the opposite though. Withdrawal from it was horrid.
Just giving my own experience and not intended to discourage you from trying anything that you feel might be helpful to you. We are all different and react differently to medications.
I hope you get well soon!
Posts: 4035 | From Mississippi | Registered: Jul 2008
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Rumigirl
Frequent Contributor (1K+ posts)
Member # 15091
posted
If you have NMH and are already on Florinef, you shouldn't be suddenly gong off it! In fact you shouldn't be going off it at all! Of course I'm not a doctor, but it's dangerous to do that. ANd drinking a lot of water would just make it worse. Salt would be good.
Posts: 3770 | From around | Registered: Mar 2008
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posted
I called today b/c i was getting dizzy again- and he said my body probably isn't ready to come off the florinef- most people that i see are on it do not stay on long term
they do come off b/c it does have side effects-every doc that has seen me has told me to drink plenty of water-my body was close to dehydration
Overdoing anything i'm sure is bad though.
These are the tests he wants me to have done-
QFever, RMSF, Zinc, HGE, Zinc, Magnesium, West Nile, Copper, CMP, Free Ts, Hept C, Hept B, B12, Sed Rate, Babesia, Bartonella, Ferritin, Reticulocyte Count, RA Factor, EBV, CBC, TSH, T-4,
and then i'm hoping the last few are all take home things- O &P- ova and parasites, Clostridium, Campylocbacteria, and #6652 (whatever that is)
So- isnt that a TON? That is my biggest concern right now- there are 3 lab sheets so i can split it up but how many vials does that sound like??
posted
Oh and Terry thank you so much for sharing your story- how is your NHM treated? Have you ever used florinef?
Keebler- wow, no good things about samento huh? Gee i already bought a bottle- right now the only thing i'm doing that he prescribed is Nystatin for candida (he checked my tongue)
I don't know who all here is test literate but about how many vials does all those tests sound like??
posted
Regarding ID docs treating parasitic problems .... the problem is, they don't always show up on testing. I was tested via a stool test, which is considered alternative, so I doubt an ID doc would use it. That test was negative.
I tested positive for bacterial overgrowth in my intestines, so was on a number of herbs for that - uva ursi, oregano, and plant tannins. It was expensive to buy all those separate, so I bought Humaworm because it treats the bacterial overgrowth, too.
With Humaworm, I expelled a HUGE tapeworm! Then later on enula, I expelled about 30 10-15 in. long roundworms!
You can try Humaworm and enula on your own without going to yet another doctor, so it might be worth a try. Most parasites are not visible, I guess I was just one of the lucky ones getting to see mine. LOL
I did 4 rounds of Humaworm and only had "visible" results the first time. I did feel better after each consecutive treatment though.
-------------------- sixgoofykids.blogspot.com Posts: 13449 | From Ohio | Registered: Feb 2007
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Keebler
Honored Contributor (25K+ posts)
Member # 12673
posted
- To clarify, while I did not get help from Samento (and I know several others who did not either), there have been some who have been helped by it (I thought I did mention that but, looking back, I see my comment was not that clear).
It's just that, especially since when Samento was first on the market, so many were told that would be the one thing to bring them back. That promise was disappointing for many -and, as always - since each person is unique, you may have a few folks that did well on it but mostly after the new protocol was devised. Since Samento now is with a protocol, the enhanced nature of that plan seems to work for some, not others.
But many still say the antibiotics at the beginning are a huge help, along with supportive herbs.
Just don't get your hope up too high or count on just that to treat the lyme. It is not enough by itself. But, as t starting place, it may serve you well until you get the full picture of what is going on.
As it can pack a punch, start very slowly. ONE drop at at time is best - mixed in water.
As a complement, both Singleton and Buhner suggest the full cat's claw, not Samento, for patients wanting help with calming nerves. It's the TOA part of that which works in that regard and Samento or other TOA-free versions do not have that property. You might just read what several LL authors say about it and them make your decision.
In a set of links, you will see the books and links of all three mentioned here: Singleton, Buhner and Zhang. Most LLMDs are familiar with all of them and incorporate their work just as they do with the Cowden protocol. So patients have some choices.
Still, I have to say that had I ever had the chance for continuous care with a LLMD I would have considered antibiotics and, had that been an option early in the disease, it may have made a difference. Or I might have also dug in and really stuck to the Zhang protocol. Or a combination.
But the most important thing is to absolutely certain that whatever you used against the spirochete that it is clearly possesses anti-spirochetal ability.
I was dx years late, so whatever choice patients have in that event, it's a much harder path but not impossible. You are lucky to be approaching this fairly early on (if I remember correctly).
You might also ask your LLMD about the Zhang protocol. If considered, depending on how long you've had lyme, you would really need to stuck to it for 6 - 18 months, along with LLMD visits and maybe, with abx. Buhner, too, could be a strong contender.
Especially early in the infection, I don't think herbs alone are enough. And all herbs are not at all equal. Not by a long shot.
I think they are an essential part of the plan, but the spirochete is a mighty thing. Some herbs are just not strong enough. Those that are need to be used according to plan, all the time, for long enough with the full complement of support supplements.
----
As for if you have NMH or not. You clearly have problems in that area, according to two doctors. So, IMO, it's not so important to know if it's POTS or MNH or what. It's clear you have reactive low blood pressure.
Learn how to care for yourself around with food, water, sea salt, posture, rest and not standing up too quickly or walking too quickly after just getting up. We all know that lyme and other infections cause NHM.
As you are just beginning lyme treatment and gather more details, if you are concerned about the tilt table test, just treat it anyway and then, when the infections come under control, this should self-correct. Along with attention to infection, Adrenal support is clearly required, though, all along the way for anyone with low blood pressure issues.
I can see that a test confirmation could be of help but you don't necessary need that to move forward with safety measures.
If you might need to apply for SSD, the test may be helpful, though.
Also, if you are already on the Florinef, if you do the tilt table test, be sure to ask about how that works if you are on the Rx.
As with just about everything here, some of us did great tolerating the test (I did - but they botched the test procedure) . . . some don't handle it so well. So, if you decide to do the test, just be cautiously optimistic and prepared with carrot juice for afterward and ride home sort of thing.
As I understand it, you've barely even been of Florinef for a full week yet. Give it time to adjust - or study on a different approach but, it's true, once on it you should not stop suddenly.
But, I'm confused. You said the LLMD wanted you off the Florinef that you had just been prescribed days earlier but was going to wait on. Then, above, it sounds like you are taking it against your new LLMD's advice.
So, if you are on it, you can't suddenly stop. And, if you are not yet on it, you might go ahead and consider the test.
About all the blood tests your doctor wants to run - wonderful. Knowledge is power. Not everything is lyme and the test results will help as he formulates a plan.
I know this is a lot. And there will be differing experiences and opinions. Just take it all in and sit with it for a while. My guess is the LLMD did not start you out full force on a strong lyme treatment plan first to gather more details and then, to start you off slowly.
Good luck. -
[ 01-01-2010, 03:19 PM: Message edited by: Keebler ]
Posts: 48021 | From Tree House | Registered: Jul 2007
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Thank you both! sixgoofykids- i have done 1 round of humaworm and it was not so good for me- but i will definitely consider the enula b/c i am already equipped w/samento and parsley
It's all SO confusing. Keebler you are so informative and thorough and that is great for newbies like me.
To clarify- my Lyme doc said he thought i jumped the gun by asking for florinef from the cardio doc (my lyme doc thinks the blood pressure issue will be corrected with treatment and is dysautomnia)
He said he didn't think it was necessary- and i had not taken a dose that morning i went to his office
the part you are confused about is that i called his after hours number later the next day to ask about it because i was dizzy he said he did not think my body was ready to come off the florinef and told me to take it.
I guess he was trying to evaulate if it was necessary for me-and the fact that i was dizzy again let him know my body was having a withdraw effect
I am very pleased with everything he wants to run and i think it will be a difficult choice between him and the doc that is close to me.
As for the parasite issue- i guess i will order the enula- he did order some stool tests and i did mention to him that they are not accurate- there is a lab that is supposed to be more accurate but i feel like i don't have tons of time..
maybe it's just a feeling but i'm so darn dizzy and tired these days.
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