posted
I am so glad I found this site. Now I know I am not crazy and there are many people going through the same things as me. I have been fighting this battle since 2002 and I finally learned I have Human Granulocytic Ehrlichiosis which my Dr. also called anaplasmosis. It has taken me years to get this diagnosis and would like to hear from anyone else that has had HGE. The last time I know I was bitten by a tick was back in 2000 and tested negative for Lyme and never had the bullseye rash, so never got any treatment. It was in 2002 that the 1st of the strange symptoms showed up. I started getting skin rashes (mostly on the trunk) that would come and go. My PCP sent me to a dermotologist who wasn't sure what was causing them but thought it might be from an anthropod bite. The next symptom that appeared was I developed mitral valve prolapse and then alot of gastric issues. I had a couple more Lyme tests over the next couple of years and they were also negative. In 2005 I started having tremors, dizziness, and overall body weakness so I was sent to a neurologist who suspected MS and after more bloodwork and an MRI of the brain found nothing. I then had more gastric problems and I learned I have Barrett's esophagus and irritable bowel. In 2007 the tremors, weakness, got worse and I developed an irregular heartbeat. I was sent to a cardiologist for more testing. The echo and stress tests came back OK so I was told not to worry about the heartbeat. In 2008 things were still getting worse and now I had aches everywhere, my muscles were always in spasm, I was getting sweats, I could no longer do alot of everyday things, and I lost 13 lbs. in 1 month ( I weigh 106 lbs.) so now I was sent to see an endocrinologist. He scanned me from head to toe looking for a tumor but found nothing. My PCP then sent me to a rheumatologist who told me you don't have Lyme but told me I have fibro and CFS. I developed a vitamin B12 & D deficiency along with low Magnesium and Potassium so was put on supplements. The tremors, dizziness, and weakness were getting worse so it was back to a new neuro who did a brain MRI which now showed a small lesion on the pons area and bloodwork which came back that showed I have Epstien Barr. I was again tested for Lyme and it was still negative. My cardio also did a cardiac cath to check my heart and which came out fine. My gastro did a colonoscopy checking for Celiac disease because they thought I might have a malabsorbtion isssue causing the weight loss but it negative. I was starting to think I might be crazy. I finally found a different Dr. last month who really listened and decided to test me for Lyme co-infections and that is when he found the HGE which he says is an old infection. I was negative for the other co-infections but he also found I have a IgA and IgM deficiency so my immune system isn't functioning properly either. He now wants to put me Minocycline for a month along with Prednisone for 10 days. He told me that HGE and cause all the same symptoms as Lyme and feels this is what is causing most of my problems. I am nervous about these meds because of all my stomach issues. I am wondering if anyone else has had HGE and had alot of the same symptoms as me. I have heard that most Drs. believe that Ehrlichiosis only causes fevers and flu like symptoms and nothing more, but my new Dr. says that's not true. I am really concerned about how much damage that this HGE has caused by body since it was untreated for so long. I would love to hear from anyone that can give me any info about this. Please forgive me for such a long post. Madison
Posts: 5 | From New York | Registered: May 2009
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posted
Hi Madison, welcome. We have many memeber who have neurological Lyme and cannot read text that is all together. I am going to break it up so more can read it.
I am so glad I found this site. Now I know I am not crazy and there are many people going through the same things as me. I have been fighting this battle since 2002 and I finally learned I have Human Granulocytic Ehrlichiosis which my Dr. also called anaplasmosis.
It has taken me years to get this diagnosis and would like to hear from anyone else that has had HGE. The last time I know I was bitten by a tick was back in 2000 and tested negative for Lyme and never had the bullseye rash, so never got any treatment.
It was in 2002 that the 1st of the strange symptoms showed up. I started getting skin rashes (mostly on the trunk) that would come and go. My PCP sent me to a dermotologist who wasn't sure what was causing them but thought it might be from an anthropod bite.
The next symptom that appeared was I developed mitral valve prolapse and then alot of gastric issues. I had a couple more Lyme tests over the next couple of years and they were also negative.
In 2005 I started having tremors, dizziness, and overall body weakness so I was sent to a neurologist who suspected MS and after more bloodwork and an MRI of the brain found nothing.
I then had more gastric problems and I learned I have Barrett's esophagus and irritable bowel. In 2007 the tremors, weakness, got worse and I developed an irregular heartbeat. I was sent to a cardiologist for more testing.
The echo and stress tests came back OK so I was told not to worry about the heartbeat. In 2008 things were still getting worse and now I had aches everywhere, my muscles were always in spasm, I was getting sweats,
I could no longer do alot of everyday things, and I lost 13 lbs. in 1 month ( I weigh 106 lbs.) so now I was sent to see an endocrinologist. He scanned me from head to toe looking for a tumor but found nothing. My PCP then sent me to a rheumatologist who told me you don't have Lyme but told me I have fibro and CFS.
I developed a vitamin B12 & D deficiency along with low Magnesium and Potassium so was put on supplements. The tremors, dizziness, and weakness were getting worse so it was back to a new neuro who did a brain MRI which now showed a small lesion on the pons area and bloodwork which came back that showed I have Epstien Barr.
I was again tested for Lyme and it was still negative. My cardio also did a cardiac cath to check my heart and which came out fine. My gastro did a colonoscopy checking for Celiac disease because they thought I might have a malabsorbtion isssue causing the weight loss but it negative.
I was starting to think I might be crazy. I finally found a different Dr. last month who really listened and decided to test me for Lyme co-infections and that is when he found the HGE which he says is an old infection.
I was negative for the other co-infections but he also found I have a IgA and IgM deficiency so my immune system isn't functioning properly either.
He now wants to put me Minocycline for a month along with Prednisone for 10 days. He told me that HGE and cause all the same symptoms as Lyme and feels this is what is causing most of my problems.
I am nervous about these meds because of all my stomach issues. I am wondering if anyone else has had HGE and had alot of the same symptoms as me. I have heard that most Drs. believe that Ehrlichiosis only causes fevers and flu like symptoms and nothing more, but my new Dr. says that's not true. I
am really concerned about how much damage that this HGE has caused by body since it was untreated for so long. I would love to hear from anyone that can give me any info about this.
Please forgive me for such a long post. Madison
-------------------- TL Posts: 365 | From OK | Registered: Jul 2007
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Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Madison I would still put money on LYME.
I would take all your labs and reports to a LLMD
asap.
Bettyg where are you?
You may be like over
50% of the patients here and not test positive
until you challenge the Western Blot.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Unfortuntely, your history is not unlike many of ours, searching for answers while getting worse and worse.
It would be in your best interest to find an LLMD (Lyme literate MD) to be evaluated. The bloodwork for most tick borne (or vector) illnesses is not ver accurate.
At the top of this page there is a sticky posted by Bettyg that has a wealth of information for new people.
There will be many people along to further guide you.
Steroids are a BAD idea for anything tick (vector) borne...........
-------------------- TL Posts: 365 | From OK | Registered: Jul 2007
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I'm going to echo Tif's warning: Please be very cautious about steroids!
If you do have Lyme, a 10 day course of Prednisone will make your infection much worse. If you have inflammation, talk to your doctor about trying NSAIDs first.
Steroids are immuno-suppressants. You might get short-term relief, but in the long run, they will worsen you illness if it is Lyme.
I was put on Prednisone before my Lyme diagnosis. I got about a week of relief, followed by getting more sick than I'd even been.
Pinelady
Frequent Contributor (5K+ posts)
Member # 18524
posted
Dang it, I just remembered something!!!
When I was diagnosed with histoplasmosis over a year ago. I was
given steroid shots and pills for the sudden asthma
that went with it. While now I believe it was Bb
all along, it was then I got so much worse and
believed I had cancer and dying. Luckily my
doctors just thought I was nuts. Blood looked great.
-------------------- Suspected Lyme 07 Test neg One band migrating in IgG region unable to identify.Igenex Jan.09IFA titer 1:40 IND IgM neg pos 31 +++ 34 IND 39 IND 41 IND 83-93 + DX:Neuroborreliosis Posts: 5850 | From Kentucky | Registered: Dec 2008
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posted
Thanks to everyone that has responded. I too have been concerned about the steriods since my immune system is already in trouble for some reason, so I am worried about causing it even more problems.
I'm not sure the Drs. reason for wanting me to take them other than he did mention he felt I had alot of inflamation so maybe he thought it would help with that along with my other aches and pains.
I do have an app't with an immune Dr. coming up next week so I think I will wait until I see him before starting the steriods. I am worried enough about dealing with just the anitibiotics. I so am afraid I won't be able to tolerate them very well, since I am very sensitive to most meds anyway.
I did contact a LLMD that is about 70 miles from me, and was told it would be 6-8 months to get an app't and the charge is $750.00 plus any testing would be an extra,and he does not accept any insurance. I greatly appreciate any and all info that is given. Madison
Posts: 5 | From New York | Registered: May 2009
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bettyg
Unregistered
posted
welcome madison!
since i'm on the pc until EARLY AM ... 2-5 AM since i can't sleep; i'm NOT here in late mornings .. trying to get my BEAUTY sleep!! lol
tiffany, god bless you for breaking up madison's solid block text that i/other severe neuro's can not read or comprehend!!
tiffany/others, for your info, my huge bettyg newbie package links was deleted by moderator lou b since it EXCEEDED the limits lymenet had available. i could not go into delete anything nor add things.
there was some wrong info in it, so they had no choice to DELETE MY ENTIRE PACKAGE.....hundreds of hours of work! darn... ******************************************************
copy tiffany's broken up version of your post, and PASTE that to a NEW post in SEEKING DR. forum.
subject: NY LLMD NEEDED
paste broken up version there
go to lower left hand corner and mark box to receive all replies, and we'll give you more of a selection of llmds.
east/west coast llmds are VERY EXPENSIVE OUT OF POCKET! but i know we can get you into other places in several weeks up to 1 month, etc .... better than what you quoted above ok.
what concerns me very much is barrett's syndrome; what is the dr. doing about this ?? this is a very serious and can be fatal disease.
we've lost several members to this in all honesty; 1 got to be a good friend of mine, and another online friend here is going thru this too.
Welcome; i'm so glad you found us!! You've come to the right place for education and support!
Betty's suggested POSTING GUIDELINES . many of us have neuro lyme where we can NOT read long solid block text and be able to comprehend and read it as is.
please edit your post by CLICKING PAPER/PENCIL ICON to right of your name. that opens up BOTH subject line and body text.
now please break up your WORDY SENTENCES into one sentence paragraphs. Then hit ENTER KEY ``TWICE`` after each paragraph; we need that space for comprehension.
then go to left hand corner and mark box to receive ALL REPLIES, and click EDIT SEND
we thank you for helping us; otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. ------------------------------------------------------
People seeking doctors might be able to get help from their state online information and support group. Nearly 3,400 people belong to state groups. Some of the groups are small but more than 20 of them have 50 or more people and seven have over 100.
The groups are moderated and you have to apply. Most don't allow doctor names, but once on the group, you can ask for doctors in a certain area and ask people to email you privately. *******************************************
This explains the medical politics around lyme WHY you need an ILADS-educated or ILADS-member LLMD (and there are also some ILADS-member LL NDs (naturopathic doctors):
You should also be evaluated for coinfections. Not all tests are great in that regard, either, but a good LLMD can evaluate you and then guide you in testing. One of the top labs is:
"With most infections, your immune system first forms IgM antibodies, then in about 2 to 4 weeks, you see IgG antibodies. In some infections, IgG antibodies may be detectable for years.
Because Borrelia burgdorferi is a chronic persistent infection that may last for decades, you would think patients with chronic symptoms would have positive IgG Western blots.
But actually, more IgM blots are positive in chronic borreliosis than IgG. Every time Borrelia burgdorferi reproduces itself, it may stimulate the immune system to form new IgM antibodies.
Some patients have both IgG and IgM blots positive. But if either the IgG or IgM blot is positive, overall it is a positive result.
Response to antibiotics is the same if either is positive, or both. Some antibodies against the borrelia are given more significance if they are IgG versus IgM, or vice versa.
Since this is a chronic persistent infection, this does not make a lot of sense to me. A newly formed Borrelia burgdorferi should have the same antigen parts as the previous bacteria that produced it.
But anyway, from my clinical experience, these borrelia associated bands usually predict a clinical change in symptoms with antibiotics, regardless of whether they are IgG or IgM." ===========
ILADS The International Lyme and Associated Diseases Society (ILADS) provides a forum for health science professionals to share their wealth of knowledge regarding the management of Lyme and associated diseases.
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Your story sounds exactly like mine in almost every single detail, it's a little frightening. (Except I lost 40lbs.) I have lyme disease. I strongly suspect you do, too.
Regarding your diagnoses of "CFS", "FIBRO" and "IBS": Those 3 together simply ARE the the symptoms of Lyme. (And really, CFS, IBS and Fibro are not real diagnoses, they are a useless list of symptoms to prescribe medications for.)
I know it's confusing and demoralizing to be told so many different things by so many different doctors. But the fact is none of them have any idea what they're dealing with. The level of ignorance in the medical community about lyme is astonishing.
I urge you to see an LLMD, even if it's expensive. Without receiving appropriate treatment you will not get better, and could very well get much, much worse. I dragged my feet about finding one myself, and now deeply regret it. I would have been feeling better a year earlier, and perhaps never have gotten so sick in the first place.
I wish you luck!
Posts: 13 | From Vermont | Registered: Aug 2006
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I'm not sure if other posters mentioned this, but you may want to work with your doctor to test again after an "antibiotic challenge". The bacteria causing Lyme Disease are quite stealthy and are able sometimes to evade detection by the immune system. If your immune system is "missing" the lyme, then you would not test positive.
Several people have found that if they treat with antibiotics for a month or two and then retake the test, they suddenly test positive for lyme. This is because as the antibiotics cause they bacteria to break up and die, your bloodstream is suddenly filled with the flotsam and jetsam of broken up bacteria. Your immune system says "holy crap, what they heck is going on here?!" and starts making antibodies to the Borrelia.
If you do a search in the threads for antibiotic challenge, you can find more information about this. I do not know if the antibiotic your doctor proposes to treat you with is effective or not for such a test. However, before doing the more costly LLMD route, you may want to work with him/her for a couple of months and see if a second test AFTER an antibiotic course is more revealing.
I cannot speak to how your out-of-whack immune system would respond to such a course of treatment, and if a challenge would work. However, perhaps some of the more experienced members can point to specific resources or descriptions of this protocol that you can share with your current physician.
With such an array of non-specific symptoms -- just like me, and just like nearly everybody here -- I think it is too soon to rule out other competing diagnoses. I also think it is too soon to rule out lyme disease; it is one of several illnesses that should be thoroughly investigated.
Finally, if your doctor is willing to try a course of antibiotics and retest, like many here I suggest using a lab called Igenex. They include a wider range of antibodies in their tests and use more sensitive procedures (they specialize in testing for tick borne illnesses) and many who previously tested negative for Lyme in spite of suggestive symptoms later test positive at this lab.
Good luck, do keep us posted on your progress.
Kim
-------------------- Wildlife biologist working in tropics since 1997; tick bites in Nicaragua in March 2007, started getting sick May 2007; diagnosed with Lyme based on serological testing in Jan 2009; treatment starting Feb 2009. Wish me luck! Posts: 116 | From Seattle | Registered: Feb 2009
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otherwise, we will SOB, SCROLL ON BY, since we can't read to help you. If I see posts like this, I SOB them; to hard on me. 
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