"I just got a call, have to go to the ER now. My hgb and rbc are dangerously low, below transfusion level.
I'm so scared and upset. I really don't want to go but have no choice.
They are also making me stop all meds. Please pray and ask others to pray for me too."
I called and spoke with her; her LLMD has sent her to the ER and will speak with the ER drs. I also said to call the immunologist to speak with the ER drs about the effects of IVIG on the hemoglobin and red blood cells. So she is going ASAP.
Please send love and prayers her way. She has had to deal with way, way too much. I'll update as I get news from her. Thank you!
Mods: This would ordinarily go under General Support, but it's urgent, so I want people to see it right away. Thank you.
[ 05-23-2012, 03:38 PM: Message edited by: Rumigirl ]
Posted by FuzzySlippers (Member # 13658) on :
oh dear. Rumigirl, please, please, let sammy know that prayers are being raised up for her as I type this.
Thanks for letting us know.
Posted by Jane2904 (Member # 15917) on :
Prayers for Sammy.
Please keep us posted.
Posted by Carol in PA (Member # 5338) on :
Sammy, May the good Lord guide the nurses and doctors who treat you.
I pray that the transfusion will help you.
Posted by sparkle7 (Member # 10397) on :
I hope your suffering will be over soon, sammy! You have had more than enough. All the best to you!
Posted by gatorade girl (Member # 24896) on :
Thinking and praying for Sammy
Posted by Garden (Member # 31671) on :
Prayers for Sammy!
Posted by Garden (Member # 31671) on :
Prayers for Sammy!
Posted by Haley (Member # 22008) on :
Sammy,
May God bring you strength to make it through.
Will be thinking of you.
Posted by glm1111 (Member # 16556) on :
Sammy,
So sorry you are so sick. Sending HUGE thoughts and prayers yiur way.
Gael
Posted by Maryland Mom (Member # 2043) on :
Praying for Sammy!
Posted by debilyn (Member # 35753) on :
Sending prayers up for you, Sammy.
Posted by BoxerMom (Member # 25251) on :
Thinking of you, Sammy!!
Posted by Tammy N. (Member # 26835) on :
Sending healing thoughts. May God give comfort to Sammy and much-needed wisdom to the docs so she can have the best possible outcome. Posted by DKat (Member # 30941) on :
Sammy, Praying for you. I'm so sorry you're enduring so much right now. Looking forward to the time this will turn around and you will be healed!
Posted by Sammi (Member # 110) on :
Rumigirl, thank you for letting us know this.
sammy, my thoughts and prayers continue for you. You have been through enough already! Please hang in there, we are all pulling for you.
Posted by opus2828 (Member # 15407) on :
Praying for Sammy.
Posted by Lymetoo (Member # 743) on :
PRAYING!!!!
Posted by beths (Member # 18864) on :
My thoughts and prayers are with you.
Posted by fflutterby (Member # 28081) on :
Praying for Sammy too !!!!!!
Posted by baileypup (Member # 22824) on :
Healing thoughts and prayers for you Sammy....
Posted by momindeep (Member # 7618) on :
Oh Sammy...so sorry...continued prayers for you.
Posted by lyme in Putnam (Member # 11561) on :
Sammy, you're strong with all you've been through, you'll kick this too. God bless.
Posted by tickle (Member # 36441) on :
Any word on how she is doing?
She's in my thoughts! She has suffered so &^*% much, it's horrible.
Posted by Lauralyme (Member # 15021) on :
Sending healing thoughts your way
Posted by randibear (Member # 11290) on :
sammy I'm so sorry you're going through all This. Lyme sucks...
Get well soon and I'm praying for ya
Posted by Dekrator48 (Member # 18239) on :
Praying for you, sammy!!
Will be waiting to hear an update.
I'm so sorry that you are experiencing this.
Posted by TxCoord (Member # 9204) on :
Silver & TxCoord keeping Sammy lifted up to the Lord.
Posted by gagamooppop (Member # 34314) on :
Many prayers....so sorry you are you going through all of this.
Posted by seibertneurolyme (Member # 6416) on :
Rumigirl --
Hope Sammy has thought of this question and asked -- is there any possibility that she is having internal bleeding as a result of the 2nd back surgery which I think was only a week ago?
Otherwise the low RBC could obviously be from babesia -- always so hard to say if that means the meds are working really well and killing infected cells or that the meds are not working and the babesia is multiplying and killing infected cells.
Sammy -- You are in my thoughts and prayers.
Bea Seibert
Posted by Dogsandcats (Member # 28544) on :
Prayers for you Sammy - God sees all and can heal everything - praying for that healing touch now.
Keep us posted.
Posted by Rumigirl (Member # 15091) on :
Thank you, everyone, for sammy. I will call her tomorrow and find out how she's doing. I almost called tonight, but surely she is totally caught up in dealing with it all in the hospital. What a shock. She was really upset, understandably!!
Bea, both ideas are real possibilities, I'll pass them on tomorrow. I also thought that it could be from the IVIG possibly, as my neuro was not worried about my continued low WBC, which he said IVIG can cause. I"m not sure if it can also cause low RBC, maybe not.
Posted by Spindleshanks (Member # 32556) on :
Prayers!
Posted by sammy (Member # 13952) on :
I'm here
Thank you all so much, thank you everyone for thinking of me and praying for me.
God heard our prayers and answered the cries of our hearts. He definitely provided for me tonight.
I was truly blessed because the ER doctor that I know was working tonight. He knows my story, what I have been through with other doctors, and how I have struggled with these devastating life changing infections over the past couple years. I knew that I could trust that he would take care of me and not judge me.
So I was blessed that this doctor was working, blessed to be able to see/ request him because this ER is the busiest and largest in the state. I was blessed that my ER doctor was so willing to work with my LLMD.
After thorough history and exam, they decided to first check my labs. Thank God, they were better! Not nearly good but better than yesterday. So they decided that I wasn't actively bleeding to death and let me go home for now.
Who knows what tomorrow will bring. Maybe I should not answer my phone Just kidding!
Hopefully I will be allowed to restart my antibiotics before I start to relapse and my fevers come back. I tend to relapse and get sick very quickly when off antibiotics.
When I speak with my LLMD I will have to ask about the possibility of babesia flaring/needing more treatment (eosinophils are always high too). Also try to find out about the IVIG.
First I need to get some sleep.
Thank you Rumi for helping me with this post. I was way too upset to be able think clearly and write OK earlier.
Posted by glm1111 (Member # 16556) on :
Sammy,
Soooooooooo glad that you are okay!!! Just noticed that your eosinophils are always high.
That can be very indicative of a parasitic infection, and so can low rbc and hemaglobin. I forget....are you taking any antiparasitics? I was on 2 years of IVIG...did not help me, but everyone is different.
Maybe a combo of antiparasitics and abx could help you. Just thinking out loud. Really would like to see you make some progress.
Gael
Posted by Rumigirl (Member # 15091) on :
Yeah!! I'm sooo glad that your are home, and that you had an understanding dr, and that you didn't need a transfusion!!
More tomorrow.
xoxoxo
Posted by Carol in PA (Member # 5338) on :
quote:Originally posted by sammy: So they decided that I wasn't actively bleeding to death and let me go home for now.
. Yayy!
Hope you can get some sleep.
Posted by BoxerMom (Member # 25251) on :
Sleep tight, and keep us posted. I'm glad you got to go home.
Posted by nonna05 (Member # 33557) on :
Lord cover Sammy tonight as she tries to sleep, watch over her, send your healing power to move throughout her body.
Give her the relief she so needs and protect her from anymore damage.
Bless her from head to toe. Let her feel the love from those that are praying for her. Move the mountains of doubt and give the doctor's clear direction for the best outcome .
We praise you and Thank you,, Amen & Amen
Posted by Sammi (Member # 110) on :
sammy, I am so glad your labs improved enough! This is what I prayed for. Thanks for letting us know.
You must be so exhausted. Take good care and get some rest.
Posted by Dekrator48 (Member # 18239) on :
Glad to hear that you were seen by a Dr you can trust, your labs were a little better and you are home.
I will keep praying for you, dear friend.
Hugs!!
Posted by Jane2904 (Member # 15917) on :
Glad to hear things are better. Hope your Dr. figures it all out.
Hugs and hope you get some sleep.
Posted by Marnie (Member # 773) on :
Get some good delta wave - ATP producing sleep! (Not kidding.)
May God bless you with a miracle.
What about:
A patient with acquired immune deficiency syndrome (AIDS) and babesiosis failed treatment with azithromycin and atovaquone followed by quinine and clindamycin.
The *addition of* atovaquone-proguanil (malarone) to the treatment regimen led to cure.
Remember Frontline for our dogs impacts chloride channels too.
The way in ?
Berberine chloride/HCL for the other guy.
[ 05-24-2012, 11:04 AM: Message edited by: Marnie ]
Posted by Lymetoo (Member # 743) on :
If that's not an answer to prayers, I don't know what is!!
We'll keep praying!
Posted by glm1111 (Member # 16556) on :
VERY profound insight TuTu. I agree!
Posted by Catgirl (Member # 31149) on :
Hang in there Sammy!
Posted by momindeep (Member # 7618) on :
Whew!
Posted by burnsjw (Member # 11819) on :
praying.
Posted by TxCoord (Member # 9204) on :
Cool beans! Silver and I are keeping you in mind.
Posted by RZR (Member # 20953) on :
Hope you are feeling better, Sammy. Prayers for you.
Posted by sammy (Member # 13952) on :
Thank you for your prayers friends. They are very much appreciated!
Yesterday was really rough. I was feeling very feverish, woke up with a rash (little red bumps with lines) across my abdomen and chest, all my joints were stiff and painful, and I had an awful migraine.
I'm feeling slightly better but the crazy rash is still here. Weird. It doesn't itch or hurt. I'm stumped as to what it's from.
My doctor let me restart my antibiotics. He doesn't think that it is babesia causing this drastic rbc destruction/anemia. I asked if he thought it was viral and he said no. It is also not caused by the IVIG. All he could tell me was that he was very worried. I don't want to worry him.
Next week I will follow up with my hematologist. They gave me an emergency appt with him. When I first called they told me that the doctor was completely booked for at least 10wks. That's crazy! I told her that I'd probably be dead by then if my hgb keeps dropping... At least that got her attention and I got to talk to a nurse
I'm extremely grateful for the extraordinary care that my LLMD and his wonderful NP continue to give me. I'm so glad that they haven't given up on me yet. I hope and pray that they never will.
We are truly blessed to have our LLMD's on our sides.
Posted by seibertneurolyme (Member # 6416) on :
The rash almost sounds like shingles but I think that would itch.
Have you ever been diagnosed with ehrlichia, anaplasma or RMSF? All of those can cause a rash -- and they all can cause both low WBC, low RBC, low platelets and fevers.
Are your platelets low? -- I think that can also cause a rash.
If it is not babesia then I think the next obvious thing would be one of the rickettsia diseases I listed above.
Have you changed any meds recently?
While you are waiting for your appointment with the hematologist I would suggest making a chart for the last 4 or 5 months of your routine bloodwork. I do this for hubby. I just list the key variables for him -- RBC, hemoglobin, hematocrit, platelets, RDW, WBC, bilirubin, AST and ALT. This way it is easy to keep track of any significant changes and then we can look at his med list and see if changes there are reflected in improvements or worsening bloodwork.
Hubby has bloodwork done weekly and I would assume you are having it done at least a couple of times a month since so many things are going on with you.
Does your doc order routine urinalysis? If babesia was very active generally I would expect to see a few RBC show on the urine testing. Or possibly elevated urobilinogen (excess bilirubin from destruction of RBC can spill over into the urine).
Bea Seibert
Posted by Lymetoo (Member # 743) on :
Stephen Johnson syndrome?? Hope not!!
Continued prayers, sammy!
Posted by pme (Member # 31621) on :
Just wanted to add my prayers. If you can Press through then so can I It's been a really and week but not like this. Thanks for keeping posted
Posted by pme (Member # 31621) on :
Just wanted to add my prayers. If you can Press through then so can I It's been a really and week but not like this. Thanks for keeping posted
Posted by nonna05 (Member # 33557) on :
Sammy , praying and hope you're feeling a bit better every hour..
What's Stephen Johnson syndrome from/ what is it?
Was she on something that causes it?
Posted by lyme in Putnam (Member # 11561) on :
Prayers up.feel better sammy
Posted by sammy (Member # 13952) on :
pme, I'm sorry you've had a really rough week too. Glad we've both made it through
Thankfully my rash and symptoms do not look like Stevens-Johnson syndrome. That is a really scary possibility that I had not even considered until Lymetoo mentioned it.
Stevens-Johnson syndrome is a serious skin condition that can be caused by medications and rarely even infections. Certain medications have a higher risk for this like Septra/Bactrim. Symptoms usually start with fever and sore throat then you will develop the classic blistery rash. This can be fatal.
I don't think my rash looks like shingles either. If someone can tell me how to post a pic, I'll put one up here and maybe you all can tell me what you think.
The only recent med change I've had was when I did a brief (10day) RX parasite treatment protocol. I finished it about 10 days ago. I still have elevated eosinophils so that probably wasn't enough to treat what was found by metametrix.
And yes, my LLMD wants my CBC and CMP to be done every 7-14days. So I'll have plenty of lab results to bring to my hematologist. I doubt that he will be interested though. I started seeing him this past winter, my labs were essentially the same. He ran all kinds of tests and decided that it was the infections causing my abnormalities and that I just needed to keep treating. I was released from his care in Feb. I'm kinda dreading this appt. I think the only test he didn't do was a bone marrow biopsy.
Posted by glm1111 (Member # 16556) on :
Agree with manybites as I have posted above, that PARASITES can cause anemia. Dr. K. says you have to get rid of G.I. parasites in order to get rid of babesia.
Gael
Posted by sammy (Member # 13952) on :
I did test positive for a parasite through Metametrix, "taxonomy unknown". I also have a history of foreign travel and volunteer work what you would consider very high risk conditions.
I've had elevated eosinophils throughout my Lyme treatment. They drop down some but never close to normal.
My LLMD recently treated me for the unknown parasite with 2 days of bitricide, 1 day of pin-x, 1 day of ivermectin, and 6 days of alinia. That is all he feels is necessary right now.
He thinks that there are more urgent matters to take care of first. He is very wise and experienced so I can't help but believe him. I don't know if he has much experience treating parasites though.
I will try to ask for more treatment during my next appt. It is hard to know what is needed when we don't know what is causing the problems.
I've also done over a year of treatment with Mepron, Biaxin and Plaquenil + herbs and other Lyme meds. That combo was not enough to kick my Babesia. We are constantly trying to treat Babesia (with other meds now). We are trying.
Posted by seibertneurolyme (Member # 6416) on :
Sammy,
Can't even imagine how frustrated you must be. I seem to somehow have lucked into a combo of meds and herbs that is definitely stirring things up for hubby -- hopefully we are killing things and they are not just replicating.
His LLMD was sick and cancelled his appointment this week so we are just continuing on with our experimenting.
In your situation I would probably be nervous about trying herbs and other things on my own as you already have so many issues.
You are dealing with pain, immune deficiencies and critical bloodwork issues. It seems like improving the bloodwork might be the first order of business. If the hematologist still says infection is the issue then it seems like the logical infection would be parasites (either G.I related or bloodborne -- such as babesia).
Maybe you could try adding alinia and or ivermectin to your current meds on a long term basis. Hubby took alinia at 1/2 dose for 4 months and then at full dose for another 4 months. At the time he was taking bactrim. I do think those 2 meds were bacteriostatic at the time for his babesia.
And the ivermectin really does seem to be helpful with hubby's babesia in combo with other babesia meds. It has just about one of the cleanest side effect profiles of any med I have ever seen.
I think you are going to have to speak up and insist the doc at least try something different. I don't believe everyone has significant parasite issues, but you do have multiple indicators that that could be your problem.
Good luck.
Bea Seibert
Posted by sammy (Member # 13952) on :
Hi friends,
I saw my hematologist yesterday. Was holding my breath because I wasn't sure how this appt was going to go.
The nurse drew my blood when I got to the office so that he could review my results before seeing me. My red blood cells and hemoglobin were even lower than before. Other things were abnormal but were typical for me, he says "signs of current infection".
I brought copies of my last couple months of labs CBC, CMP, and the osteoporosis work-up because some of it is endocrine/auto-immune/cancer related. I figured I had the labs so he might as well get a copy too.
He noticed that my iron levels were on the lower end of normal so he's thinking that they may have dropped since I'm now more symptomatic. I'm going to start IV iron infusions this monday. I'll get a couple and then we'll watch to see if my levels hold steady.
He thinks that this should fix my severe anemia problem and help with some of my symptoms. He was actually really nice. My last visit with him was not pleasant. I would not have chosen to see him again had this not been an pretty urgent situation.
So I left my appt feeling pretty encouraged. I hope the IV iron helps. I'd really like to feel better.
I know that I still need to talk with my LLMD about the parasite stuff. It is probably contributing if not causing some of my current problems.
Hoping at least that this is a step in the right direction.
Posted by Lymetoo (Member # 743) on :
Hooray!! Good news at last!!
still praying for you!
Posted by Maryland Mom (Member # 2043) on :
Hope the IV iron helps, I'm continuing to pray for you, as I know many others are too.
There are different types of anemia, and many different causes. Did the hematologist think yours is iron-deficiency anemia?
One thing I have not seen addressed in this thread is your kidney function. The kidneys make something called erythropoietin, which is essential for the production of new RBCs. If kidney function is compromised, production of erythropoietin drops, the body is unable to make enough RBCs to replace old ones (average life of RBCs is 90 days), and anemia develops.
Treatment of anemia differs depending on the cause, so I just wanted to throw this information out and ask if this angle has been addressed. How are your BUN and creatinine levels? That is one of the first things to look at to determine kidney function.
Posted by sammy (Member # 13952) on :
Thank you Lymetoo and Maryland Mom.
My hematologist does think that I have iron-deficiency anemia. My LLMD will disagree. So we will see if the treatment helps. It will be pretty clear because I have my labs checked every other week.
I know that this is the easiest and most obvious form of anemia. Maybe that's why the doctor is just going to try this first. Before doing more invasive tests.
No one has asked me about kidney function before. On my last set of labs BUN was 14 (norm 6-20) and Creatinine was 0.97 (norm 0.57-1.00). Bun/Creatinine ration was 14 (norm 8-20).
Usually my creatinine is lower but I know I've been dehydrated lately, not drinking enough because I don't want to upset my stomach. It was also elevated when this lab was drawn because I was taking an RX anti-inflammatory (not taking it now). My LLMD said the creatinine level was better last week but I did not get copies of my labs in the mail yet.
I know kidneys are delicate, I don't want to hurt them.
Posted by nonna05 (Member # 33557) on :
Hi there ! Seems like your doing better.... How's the back??
Glad to see your able to post and keep us up to date....
I have a PM out to you... Take care , Nonna
Posted by pug7 (Member # 36995) on :
Could you be having an allergic reaction to meds? When my eosinophils were high, it was caused by meds.
Has your body had any reactions to the osteoplasty? I haven't been on Lymenet since the first ones were done awhile ago.
I was on antibiotics for 6 years and got sick every time I tried to get off. My LLMD told me that I would have to stay on them, possibly forever.
I went to a functional medicine MD who told me there was a withdrawal period for people who have been on antibiotics for awhile. He suggested I taper off, then expect a couple of weeks of not feeling well. He was right, and I have now been off for some years.
I found,once off, that the antibiotics themselves were exacerbating a lot of problems, including autoimmunity, and creating some as well, including massive food allergies from leaky gut.
Once off, my eosinophils went down. I also reduced inflammation by avoiding many foods.
Having health interventions from many directions, from providers with different philosophies on Lyme and co-infections, got me and my family into a lot of health troubles. Nowadays, I try to keep meds down and stay away from MD's unless absolutely necessary.
You don't have that luxury now, I understand.
Posted by Sammi (Member # 110) on :
sammy, I am so glad your appointment went much better than last time. What a relief!
Good luck with the iron infusions. Keep us posted on how you are doing.
Posted by nonna05 (Member # 33557) on :
I've only had an Iron shot once..from a doc that also did peroxide in blood and infa-red light sp?
All others have said you only take supplements to raise it....
What kind of place will do them,,,?/?///
There is no chance to go back to the original place, I spent over $4000 in 3 days for an Iron shot, massive Iv C, to the point of Hypoglycemic reaction sp?, two antibiotic shots and one back adjustment. Never felt one ounce better..
Actually that was about a year ago,,, I shouldn't be low in Iron , cause surgery etc, but I think I am,
Any other Medical/holistic places have always told me that you just have to supplement and it takes weeks if not months to feel better..
Think I better call Vitamin Cottage and ask their nutrition specialist..
I still don't think it was ever settled if we should eat liver etc...something about it feeding these bug's..
Sammy, You poor thing ,, I just can't imagine everything that is happening to you...It's crazy Domino's ..... I'm glad somebody is doing something to help..
It has been insightful ,through all this misery ,to watch Gods' hand move in your situation....
Have you had to work with a Hemotologist before Lyme??//
Did the vomitting settle down?// Anything new about the back...I hope the meds you got for that are still helping.
The idea that an infection is showing in your blood work, do you think it's new ? Kinda from the back ????
It's amazing with all the abx's we can still show that.....
I just pray the Lord will give you a few days of peace and healing rest..You've just had more than your share lately.
Praying for you.....Let me know if there's a specific request, OK ???? Posted by poppy (Member # 5355) on :
Pug was lucky. Apparently the immune system is holding it down for now. Not everyone has a good outcome from stopping abx. Some people just keep sliding downhill. The consequences can be dire if meds are not resumed for those people.
Posted by JJ29 (Member # 5288) on :
Sammy, you are in my prayers.....hope you will feel much better in the days ahead.
Posted by jwall (Member # 22999) on :
A lot of my symptoms improved with IV iron infusions. My Dr. said a lot of my symptoms like chest pain could be from low iron. I think he was right because my chest pain has gone away.
My 5 year old also is getting IV iron infusions. It seems to be helping him too. he doesn't wake screaming with his legs hurting anymore.
Just some encouragement for you! I always like to hear there is hope for getting rid of these awful symptoms. Posted by nonna05 (Member # 33557) on :
were do you get it done?/
I know a test is needed first..but not done at several places that do other IV supps
Posted by seibertneurolyme (Member # 6416) on :
Hubby just had the iron discussion with his LLMD Friday. Their opinion with which we agree is that you cannot starve out a parasite by restricting nutrients such as iron or folic acid (bactrim and daraprim use that method to kill babesia and malaria).
Hubby's ferritin is 30 which is low normal. His doc suggested adding iron supplements to get the ferritin up to at least 60 -- neurologists say that level will help eliminate some restless type neuro symptoms.
If you do supplement with iron then as long as you are treating for babesia if you have that infection it should not be a problem. Some docs even theorize that the supplementation will bring the parasites out of hiding as they go in search of the iron. If that is true then it should actually help with babesia treatment.
This is not medical advice, just my opinion based on hubby's experiences.
Bea Seibert
Posted by Tracy9 (Member # 7521) on :
Praying for you, Sammy.
Both Stevens-Johnson syndrome and lowered kidney function can be rare side effects of IVIG, but it sounds like those have been ruled out, which is great.
I'm so sorry you are going through so much! I will keep praying. Did the iron IV help you to feel better?
Posted by sammy (Member # 13952) on :
Thank you Tracy, I greatly appreciate your prayers. I will have my first IV Iron treatment tomorrow. I'm kinda excited, hoping it really helps and is worth the effort.
It's difficult for me to get showered, dressed, and ready to leave the house. Right now I just go out for doctor appts. It all causes too much pain with the back fractures and the effort makes me feel sicker. I should get my MRI results this week.
Bea, thank you for sharing about your husband's experience. I'm so sorry to hear that he is in the hospital again. I hope that things will turn around for him soon too.
I have a gut feeling that my anemia is truly connected to Babesia or an unknown parasite. If you step back and look at the situation through my LLMD's eyes, you can see why he can't immediately chalk it up to Babesia. I do test positive for Babesia. I've had "aggressive" long term treatment and I'm currently on Malarone, Septra DS, and Cryptolepis.
My doc wouldn't be a good doc if he didn't rule out other causes of the anemia since it has gotten so severe. I understand that. Hopefully I have simple iron deficiency anemia. Maybe caused by Babesia. Maybe complicated by malabsorbtion/inadequate nutrition since I've been struggling with the GI symptom (gastroparesis/vomiting) too.
Posted by Tracy9 (Member # 7521) on :
I'm really behind on what's been going on. I'll have to read back and catch up. I'm so terribly sorry you are going through so much!
Posted by sammy (Member # 13952) on :
Pug, I don't think that I'm having an allergic reaction to my medications because my eosinophils were elevated long before I started taking any medications or supplements. They have not gone away when stopping and changing medicines either.
Unfortunately I will probably have to stay on antibiotics for the rest of my life. This is due to my immune deficiency. My immunologist says that this is common for patients like me. We need antibiotics to treat active infections (like Lyme and Co's for me) and to prevent new infections.
Switching and stopping antibiotics is scary experience. If the new med or protocol is not effective I can get sick very quickly with fevers and relapse symptoms. These symptoms are so serious that I've been sent to the ER for possible sepsis. I don't like that.
I agree with Poppy, Pug you are incredibly blessed to have been able to stop the antibiotics and your immune system has kept the infections in check. I guess that emphasizes how individual we are and why no one treatment is right for everyone.
Jwall, and JJ29 thank you for the encouragement and prayers. I'm so glad to hear that the Iron has helped you.
Nonna, your LLMD can order the tests to check for low iron. When my red blood cells, hemoglobin, and hematocrit were coming back seriously low my LLMD ran the extra tests. I don't have my labs sitting in front of me right now to tell you the names. They were low normal and I was started on oral iron.
Manybites, thank you also for sharing your experience with me. I'm sorry that you have been through so much. I agree with your advice, supplements alone can only work as Band-Aids for symptoms. I need to treat the infections to really get rid of the symptoms. I've been working with my doctor to do this. It's a constant challenge as one infection seems to quiet down another roars to the forefront.
Thank you everyone so much for all your encouragement, advice, and prayers. You really do help me get through every day. I couldn't get through all this alone.
Posted by Rumigirl (Member # 15091) on :
sammy, I am so glad that you have had two good dr experiences lately, after all the horrible ones. I pray that the iron shots will help.
You know, they say the Fry bug, I forget the exact name (protozoa myx___??) can cause the same symptoms as babs. But different treatments are used, such as long-term Ivermectin, and I forget what else. That is one thought.
The other thought is another kind of parasite that you could have gotten abroad---or even from a tick. When you are ready to pursue it, I would ask John F. to talk to Dr. ___ (I'm having a lyme moment, and can't remember his name!).
I am thinking of you all the time, and have been meaning to call. xoxo
Posted by pug7 (Member # 36995) on :
My immune system has not kept things in check. My immune system has gone haywire, and my autoimmune tests are sky high. But I am better than I was on antibiotics. That does not mean, by any means, that I am well.
I can no longer take most medications anyway. For bone issues similar to yours, I just tried Forteo at a top specialist office, had a horrible reaction, went to another MD for desensitization, which did not work.
I have family members with severe health problems as well, who also were harmed by antibiotics, and have immune deficiencies on testing.
I only wanted to say that what I thought was a relapse of Lyme etc. when I first went off antibiotics, turned out to be a sort of withdrawal. It can be worth a try to go off and wait a couple of weeks to see what happens.
We were also told to say on antibiotics for life. But as time went on, we found that many of our longest lasting problems have been caused by meds.
Posted by everythinghurts (Member # 27692) on :
Will pray really hard!
Posted by poppy (Member # 5355) on :
Autoimmune markers are common in chronic infectious disease. Those who are fortunate enough to have succeeded in treatment, to the point of not needing meds generally have these autoimmune signs disappear.
I think that harm from meds for chronic lyme is debatable, and could easily be mistaken as a cause of subsequent problems. It would certainly be hard to untangle from ongoing infection issues. But everyone has the right to decide for themselves how much medicine they want to take. However, across the board statements that will confuse other patients should be avoided, because it may influence them, and their situation may be quite different.
Posted by Rumigirl (Member # 15091) on :
Here, here! I agree with poppy. I would love not to have to take these meds, however . . I was so sick without them, and they were the only thing that helped after years of doing natural tx only---rife, herbs, ozone, etc., etc. Eventually, I hope to not need them. JUst wanted to second what poppy said.
Posted by pug7 (Member # 36995) on :
My comments were about my own experience and no more "across the board" than other comments on this forum. If people are confused by differences of opinion, that is probably a good thing: better decisions are made by hearing a diversity of opinion.
There are some who feel that Lyme cannot really be addressed by antibiotics, at least for those with a genetic susceptibility to "intractable" Lyme based on autoimmunity.
I take Plaquenil to keep my immune system calmer. I avoid certain foods to keep inflammation down. I do Tai Chi. At some point antibiotics were not helping but were harming. I was a victim of the orthodoxy on this site and want to share my experience with others as much as those who benefited from treatment might.
p.s. black floaters are extremely common, especially after a certain age, and reflect problems with attachment of the vitreous gel in the back of the eye; gradually the brain becomes accustomed to them and you no longer see them
Posted by Maryland Mom (Member # 2043) on :
sammy, Have you or your doctor considered there may be a connection between your GI issues and your anemia? I don't want to seem to be attempting to diagnose you on the internet, I just see some compelling correlations, and wonder if they've been investigated.
For instance, cobalamine deficiency can occur in patients with chronic atrophic gastritis, nutritional deficiency, diverticuli of the small intestine, Crohn's disease, and/or GI surgery.
Intrinsic factor, a protein normally secreted by the parietal cells of the gastric mucosa, is required for cobalamine absorption.
If either IF or cobalamine is not present in sufficient amounts, a type of megaloblastic anemia develops. The exact type depends on the underlying cause.
Gi manifestations of cobalamine deficiency include sore tongue, anorexia, nausea, vomiting, and abdominal pain. You see what I mean about correlations between anemia and GI problems?
With cobalamine deficiency-related anemia, neuromuscular manifestations are also usually present, and can include weakness, parathesias of the feet and hands, reduced vibratory and position senses, ataxia, muscle weakness, and impaired thought processes.
It is important to know if both IF and cobalamine are present in adequate amounts, because without IF, dietary cobalamine cannot be absorbed by the body.
I could write pages more about other possible types of anemia, their causes, and how to diagnose them, but as I said, my purpose is not to attempt to diagnose you. I just want to make sure the doctors who should be diagnosing you are looking in all the right places, since your case seems unusually complex.
Besides the hemoglobin and hematocrit numbers in your CBC, doctors need to look at the RDW or MCV to determine average size of RBCs, and the MCHC to determine hemoglobin concentration.
Serum cobalamine and folate levels should also be measured. If there is reason to suspect lack of IF production, there is a diagnostic procedure called the Schilling test that can be done.
Hope you find some helpful answers and start to feel better soon! I'm continuing to pray for you.
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