My Lyme Symptoms as of late have returned pretty severe... My LLMD suspectes untreated coinfections, and I am starting treatment again. ( Never been off Bicillan)

My question is: Does anyone else struggle with the same problems? B/c of my Hypovolemia, The anitbiotics are VERY dehydrating, and I am going to need IV fluids regularly to help with volume...The problem is now I cannot tell what is what....Herx, Hypovolemia, or autonomic problems....they are all so intertwined.

Hi! Welcome to Lymenet! I am also new to Lymenet, but want to welcome you and give you a couple of links and some feedback.

Here is the link for newbies to this board complied by Tincup one of the major contributors on this board:
http://flash.lymenet.org/ubb/Forum1/HTML/009342.html

Also, I like Dr. B.'s info at:
http://www.ilads.org/burrascano_1102.htm

It is my understanding that hypovolemia is present in most Lyme and mysocplasma infections. Although many people may not become as symptomatic as others. There was t time when measuring blood volume was actually used to diagnose mycoplasmas.

I try to drink half my body weight in ounces of filtered water a day or I rapidly become dehydrated! Also, I have to avoid beverages that cause dehydration such as coffee, caffeine-containing beverages. Anything that will deplete blood volume.

I also have dysautonomia which is aggravating I know. Especially when you get that feeling you are gonna fall face first onto the floor or your heart goes flip flop!

Yes, they all intertwine and trying to unwind the ball of yarn to figure out what is what and what is causing what can be maddening!

I went many years without being diagnosed and have only been on treatment since April. I had my first visit with a LLMD this week. I am GLAD that you have a LLMD. IS HE TESTING AND TREATING YOU FOR CO-INFECTIONS??? I think this is vital and you mention he suspects!

I think when you address all the infections and get passed the herxing you will see improvement.

I relate, because that is basically where I am now.

I am sure that others will have better feedback, but I hope this helps!

Best of Health,

I know that several of the regular contributors to this board are offline until after Labor Day and some are fleeing Hurricane Frances.

Hang in there... someone who maybe has more answers will respond.

I also found this article helpful re: hypovolemia (even though it is addressing CFS)@
http://web.tampabay.rr.com/lymecfs/hypovolemia.htm

Also, back to Dr. B's article on about the 4th page you will find:
http://www.ilads.org/burrascano_1102.htm

"Tilt table testing is another powerful tool which, just as in CFIDS, may demonstrate neurally mediated hypotension (NMH). NMH can result from autonomic neuropathy and endocrine dyscrasias.

If NMH is present, treatment can dramatically lessen fatigue, palpitations and wooziness, and increase stamina. 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. 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. "

Specifically I am looking at this statement:

"Therapy is based on blood volume expansion (increased sodium and fluid intake and possibly Florinef plus potassium). "

I have not had the tilt table testing or Isuprel challenge nor have I been on Florinef, but I do supplement with potassium. In addition to what I mentioned in the first post.

Hope this helps!

I am lucky in the sense that I have 2 wonderful dr's,a Great LLMD, and a Great Autonomic Dr..... Andyes My LLMD is treating for coinfection. This is VERY hard for me b/c I have been through Lyme hell for years...went through agonizing herxes, and then almost got better...now it is all comming back! I
m feeling so discouraged at this point. But my LLMD said that the coinfections are most likely the culprit.

He is being very careful with treatment b/c of the Hypovolemia.... He iskeeping me on my Bicillan injections....starting me on Malarone.....and wants me to start minocylele slowly... but I tookONE pill a few days ago, and herxed so badly I have barely been out of bed since....Now I 'm dehydrating b/c the herx caused so much stress on me body, and I have to get fluids as soon as possible...this is all so Tough.I am also on DDAVP to help keepmy volume up as well.

Its VERY interesting that mycroplasma can cause hypovolemia! I am very interested to investigate this further.

It must be really tough to be going through all of this at this point! I hear that you have been dealing with this and are ready to get resolution!

I really hope that by treating all of the co-infections and all of the stuff that goes with that that you get the results you need!

It sounds as if you have a GREAT team of doctors and are getting treatment.

About 3 years ago (yes, I have suspected I had Lyme 3 years ago, but only got the proper test in April!)... Anyway, about 3 years ago I stumbled across this article and it got me thinking about Lyme and mycoplasmas and what exactly did that all imply.

Here is a snippet from the article and the link:

begin quote

Blood Volume Test

You can also ask your doctor for a blood volume test. Every human being requires a certain amount of blood per pound of body weight, and it has been observed that people with fibromyalgia, chronic fatigue syndrome, multiple sclerosis and other illnesses do not have the normal blood volume their body needs to function properly. Doctors aren't normally aware of this.

This test measures the amount of blood in the human body by taking out 5 cc, putting a tracer in it and then putting it back into the body. One hour later, take out 5 cc again and look for the tracer. The thicker the blood and the lower the blood volume, the more tracer you will find.

The analysis of one of my clients stated:

"This patient was referred for red cell mass study. The red cell volume is 16.9 ml per kg of body weight. The normal range is 25 to 35 ml per kg. This guy has 36% less blood in his body than the body needs to function." And the doctor hadn't even known the test existed.

If you lost 36% of your blood in an accident, do you think your doctor would tell you that you are alright and should just take up line dancing and get over it? They would rush you to the nearest hospital and start transfusing you with blood. These tragic people with these awful diseases are functioning with anywhere from 7% to 50% less blood than their body needs to function. "

end quote
http://www.rumormillnews.com/cgi-bin/archive.cgi?noframes;read=44896

I am sure that you know not to use ANY artificial sweeteners that are chemicals such as aspartame (Equal, Nutrasweet etc or Splenda which turns into a chlorocarbon)...

But just in case or in the event that someone else reads this post here is a quote and a link about Aspartame and Lyme:

"In addition, I think those who have had Lyme
Disease and achieved a "cure" may experience a relapse upon exposure to aspartame or other sensitizing agents even though the Lyme treponema has been eliminated from their body."

http://www.rumormillnews.com/cgi-bin/archive.cgi?noframes;read=44869

I knew that I had aspartame disease long before I knew I had Lyme disease... I found this article very helpful.

If you are herxing and in bed you may not feel like reading through all of this so I am trying to give you snippets.

Here are a couple of links listed under Tincup's newbies link that has lots of info about chronic Lyme and relapsing:

CHRONIC LYME:

Persistence or relapse of Lyme disease:
http://www.geocities.com/HotSprings/Oasis/6455/persistence-links.html http://www.geocities.com/HotSprings/Oasis/6455/persistence-special-abstracts.html

Again, I hope this helps and hope you feel better soon!

I wish you the Best of Health,

Magdalena

About the Blood Volume test: Have you had it done? When I was in the hospital in July They talked abnout getting the machine to the hospital. I guess there are very few here in the US...anyway, The Dye they use for this test is not tested long term and they could net guarantee the long term effects it could have on me since it was radioactive...I obviously refused this test b/c the last thing I needed was more complications.

Was this the thest you had? I am interested b/c if there is another test to measure volume I really want it.

I am SO GLAD that this rang a bell with you! These may be puzzle pieces that you need to get back on your feet and back into remission! (smile- I don't have those cute little images!)

Also, glad to hear that you are taking the info to your doctors! Don't be surprised; however, if they pooh pooh the info on aspartame and Splenda... it seems to be a tough nut to crack when exposing the truth about these toxins.

I had many signs of MS and gait changes and other neuro changes that resolved when I STOPPED using aspartame and other chemical sweeteners! BEFORE I ever addressed Lyme!

No, I have not had the blood volume test. I agree about the dye. I personally would not want it for that reason. I am so chemically sensitive! You aleady KNOW that you have hypovolemia. I don't see the point in having the test. Out of curiosity you might want to know exactly how LOW your's is, but for me I opt not to know and treat symptoms.

GLAD YOU ARE OFF THOSE DIET SODAS!!!

One other note about sweeteners... READ THE LABELS...they are now adding aspartame to REGULAR gum in addition to sugar!!!

I find that when I discuss artificial sweeteners with most people they don't realize HOW MANY PRODUCTS it is in until they start reading labels.

Here is another link to a letter I just noted today that adds validity to my position on this:
http://groups.yahoo.com/group/RUMORMILLNEWS/message/21479

I am excited that you are encouraged!