It’s Lyme !

[stwig]

Hello one and all,
Well it’s official, I have gotten my test results back and I have Lyme disease. Like many of you I have had a hard journey to get to this point, 4 years of frustration and pain. In particular,I want to share with you my struggles over the last 5 months.

When I went to my apt with Dr. F in Riverside in May I was in terrible condition. Could not walk without assistance of crutches and terrible pain throughout my body. At that time the doctor said that I needed to give in and go onto an immune suppressor medication called Arava. I was in so much pain, that in my moment of weakness I consented.

Within a couple of weeks my inflammation became drastically reduced, but at the same time I started having other strange side effects show up. I started developing hard nodules in my forearms, scalp and bridge of my nose. The doctor shrugged them off and just said “oh nodules, we’ve seen them before.”

In mid June I awoke with a circular rash on my rib cage that looked exactly like photos of Lyme EM. I took a photo and sent it up to Dr. F and Dr. L. along with one question, “Could this be a Lyme rash”. I got a call back from the assistant that afternoon saying NO, it is ring worm.

At my apt a couple weeks later I again asked Dr. L if it was possible that I have Lyme, and if we should test for Lyme, he stated NO YOU DO NOT HAVE LYME DISEASE. Over a couple weeks time the rash faded.

One morning in mid-July I awoke to find verticle red streaks across my abdoman. Again took a photo and sent to the doctors asking if this could be a Bartonella rash. Got a call back from the assistant stating that they are stretch marks. I said who ever heard of this many dark red stretch marks showing up overnight?

At that point I knew it was time to seek an LLMD. Nancy was so helpful, and with her kindness I got a quick appointment to see Dr. Y here in San Diego. I had dozens of tests ran including Igenx for Lyme, and analysis of blood at the Fry lab for Bartonella. Last week I got the tests back and they came back positive for borellia, bartonella, babsia, and candida.

Not a shock really, given my condition and the clinical symptoms. What truly angers me is that the doctors I had placed my trust in, doctors who I thought were on the cutting edge would not even consider lyme, even in the face of obvious symptoms. I know that there are several people here who see doctor’s F and L, and I am sad to have to speak out against them, but I just want my truth to be told. I’m sure that had I stayed on the immune suppressor any longer that the 10 weeks I took it, my pathogen load would have exploded to such a degree that I might not have lived to tell about it. Why can’t doctors who are open minded enough to accept that mycoplasma could cause RA, be open minded enough to learn to diagnose Lyme?

So now I am on a different road back and praying that it is not too late. I have had to go onto short term disability from work as I can barely move my muscles or joints. Sorry for the long rambling post, but I hope it will serve a a cautionary tale for those who are on the edge of getting the Lyme testing. I wish I had done it sooner.

Starla

[hopefulmama]

I am so empathetic to your situation, and deeply happy for you that you have found a clear path and a road back to health. That is all that matters in the end.

I see both of the doctors that you do, Dr. F and Dr Y (LLMD).

The lyme picture has been very difficult for me to navigate. I would be interested to know (if you would be willing to share) what your lab results actually said. My results from IgeneX were equivocal. Despite this, I accepted the clinical diagnosis of lyme and began to treat it using an herbal protocol developed by Dr. McF who works closely with Dr. Y. I got much, much worse over time. Awful, terrible pain and inflammation – determined not to be a herx but rather a flare… my bloodwork got much worse as my symptoms did. This continued over six months. I also have had much trouble getting labwork back from their office.

All the while, Dr. F said he did not believe that I had lyme. I ignored his advice and continued to pursue treatment. My numbers continued to get worse.

I do not know, had I gone the antibiotic route for lyme, if things would have been different. However when I began to take azithromycin after my first run of doxycycline, I had Dr. Y’s clinic test me again for babesia which had originally been a borderline positive, and this time my test came back a clear negative.

At this point, I decided to trust Dr. F completely and have followed his advice exclusively. My numbers are getting much better overall… although there is still work to do.

Obviously our situations are different, and I am so happy for you that you did find a clear diagnosis. This is so wonderful, because it makes the path toward treatment a lot more clear.

For me though, the road has been a lot murkier. I have found that Dr. F has been the only doctor who has really helped me in all of this. His office is extremely professional, they return every call promptly and kindly, he has been sensitive to our family’s financial situation, and above all the treatment he has given me has helped enormously. I felt that Dr. Y’s clinic was very quick to diagnose lyme without looking at the overall picture of my health and bloodwork.

I have just had Dr. McF run a CD57 test and if it comes back with a normal result I am going to discontinue lyme treatment. If it comes back low, I will have to re-evaluate.

I hope you will have better luck with Dr. Y and Dr. McF than I have, and I wish you all the best. I just thought it was important to give an alternate perspective, since I share both of those doctors and have been under their care for over 12 months.

Best wishes to you and I hope you have a smooth, swift recovery.

A

[mschmidt]

Starla,

I’m so sorry to hear about your troubles with Lyme and difficulties with your doctors. I’ve been seeing Dr. F since 2009, and Lyme was dismissed as part of my problem as well. However, I didn’t expect Dr. F or Dr. L to be proficient in Lyme disease–that is NOT their specialty, nor what they’ve built their practice around. The only expectation that I had from either of them was to work with my LLMD, as part of a team to get me well again. Yes, it is absolutely frustrating to be told by any doctor that Lyme isn’t a problem when you have clear clinical symptoms. I was told repeatedly by about 20 doctors that I was “crazy” to think that I had Lyme, some of which boldly stated that it simply doesn’t “exist” in a chronic form. I think that doing my own research and deciding what path I was going to go down was very empowering for me, and trusting my intuition, knowing that I am the only person who knows my body the best, helped me through ALL of the difficult times I experienced over the last 3 years. I never tested positive for Lyme unequivocally BUT, treating it did make a difference. I’m the president of a Lyme foundation in the Midwest, and I can’t begin to tell you how frustrating and difficult it is to try to get physicians to embrace a simple understanding of Lyme and its’ co-infections. I have come to understand the reasoning behind their lack of knowledge of this disease, and it is a failure in their formal education, and a failure in their continuing education. I work with many doctors (rheumatologist, infectious disease specialists, internal medicine, neurologists, immunologists, etc…) behind the scenes, and see the roadblocks put up by the institutions they work for, for doing ANY kind of credible research in this area. A lot of the docs that we pay for to get trained to properly diagnosis and treat Lyme disease are vilified by the press, their peers, and respected organizations. It’s disheartening, to say the least, and there’s a reason why there’s a shortage of LLMD’s–it takes a very strong, resilient individual to want to put themselves under the microscope, and go against the giant that is the conventional medical paradigm. I’m not trying to make an excuse for the dismissal of your experience–far from it. But, I guess I understand it, and all I can say is thank God that there are LLMD’s to go to, as well as Dr’s like Dr. F and Dr. L, who have successfully treated thousands of patients with rheumatic illnesses, using abx. I’ve had heated conversations with Dr. F about Lyme, and it wasn’t until my husband came in with me, and Dr. F heard him say he had 2 bouts of Bell’s Palsy, that Dr. F believed I had Lyme. But, I wasn’t in Dr. F’s office to convince him Lyme was a possible trigger–I was dealing with Scleroderma, and knew that he had successfully treated others with that condition. I felt comforted knowing that Clindamycin was being used for stubborn, chronic Lyme disease cases by VERY proficient LLMD’s. I went even further, and sat down with a panel of about 4 of those LLMD’s, who were starting to see dramatic changes in patients who had tried other antibiotics for Lyme but, didn’t respond until clindy was introduced. I also read a lot of research about mycoplasma infections, Gulf War Syndrome, and the use of clindy for those conditions. So, even though I didn’t start treating Lyme until 6 months after my SD diagnosis, I knew that I indirectly addressing it with the clindy iv’s I was getting for SD. I had 2 1/2 years of monthly clindy iv’s, as well as Minocin, and 2 years of various, continual antibiotics specific to Lyme. I’ve been off ALL Lyme meds since January of this year, as well as stopped my clindy iv’s in June, and I feel fantastic. For me, personally, I surrounded myself with a good LLMD, AND Dr. F and his staff. I’m very pleased with the outcome, and my insistence on arming myself with as much information about what ailed me, and taking a multi-system approach to my treatment. I was, and still am vigilant about my diet, exercise, detoxification, and addressing other issues that I believe have contributed to my illnesses. Please feel free to reach out to me via PM if you have any questions–I’m happy to share my experience with you, as well as what has worked for me in restoring my wellness.

Take care,

Maria

[Parisa]

Starla,

I believe that Dr. F has helped many patients, especially scleroderma patients, get well. My husband’s case confounded Dr. F and due to the seriousness of his lung condition Dr. F wanted my husband to start Cytoxan. I believe Dr. F had seen bad outcomes in patients with pulmonary fibrosis and his heart was in the right place when he offered the Cytoxan but it was veryu upsetting to go to an AP doctor and be offered the very drug we were trying to avoid. While my husband started the Cytoxan, I started looking for more answers and we eventually came up with the Lyme/Babesia. We moved my husband’s treatment to the LLMD’s and after a mighty struggle to get things turned around my husband is back enjoying life again.

[Maz]

@stwig wrote:

Not a shock really, given my condition and the clinical symptoms. What truly angers me is that the doctors I had placed my trust in, doctors who I thought were on the cutting edge would not even consider lyme, even in the face of obvious symptoms. I know that there are several people here who see doctor’s F and L, and I am sad to have to speak out against them, but I just want my truth to be told. I’m sure that had I stayed on the immune suppressor any longer that the 10 weeks I took it, my pathogen load would have exploded to such a degree that I might not have lived to tell about it. Why can’t doctors who are open minded enough to accept that mycoplasma could cause RA, be open minded enough to learn to diagnose Lyme?

Starla, please don’t feel bad about sharing your experience here. There is a huge difference between an AP doc and a LLMD (Lyme Literate MD) just as Maria has already outlined in really good depth. There are so many folk finding out they had Lyme and coinfections all along that we’re doing our best to keep reiterating this here on the forum, as well as suggesting people get the IGeneX labs run from the outset to help determine which type of doc to see right from the get-go. It can be hellacioualy expensive to see one doc for initial work-ups and only get so far on AP, to then later discover you need to see a LLMD and have to start from square 1 again. The testing isn’t cheap, but it can save time, money and angst later down the road. Antibiotic therapy works for mycoplasma infection anyway….Lyme is a whole different ballgame…a syndrome of cascading events that really needs the close supervision and astute clinical eye of a doc who really knows their stuff.

Not that anything with Lyme is cut and dried, as Andrea pointed out….and even the more sensitive IGeneX testing is not foolproof. The signs and symptoms you’re describing – namely your rashes – are pretty classic for Lyme and bartonella and not surprised one bit that they come on the heels of being on Arava, pred and the immune suppression these drugs confer. Lyme LOVES immune suppression and will take full advantage of further compromised immunity….this can set progress back enormously on abx therapy. Mycoplasma is slow-growing and slow-replicating and isn’t as opportunistic as Lyme on the whole.

There are some folk with rheumatic disease and Lyme who do very well on low dose monotherapy….perhaps they have a milder strain of Lyme and no coinfections. This can happen, too. However, when labs are indicative of Lyme and coinfections, rashes are clearly present and immune-suppression winds up causing worse issues than not, then I wouldn’t walk to a LLMD…I’d run like the dickens!

You’ve had such a rough go this past year with the DILE, switching to zith and then going downhill. I’m sorry, but I don’t get why you weren’t switched to combo therapy with doxy or tetra and zith with plaquenil? I remember thinking at the time…why just zith? When I got DILE, I switched right into doxy and zith and later tetra, biaxin and plaquenil. The DILE really took me back about a year in progress at the time.

I’m also interested to hear about your Lyme and coinfection labs…what showed up for you numbers-wise?

Okay, so am sure Nancy has already filled you in…but what are you doing to detox now? This is serious business and can’t tell you how much I wish I’d done more aggressive detoxing from the outset. Hindsight is a fine thing, eh?

You have two great resources there with Nancy and Parisa in your neck of the woods, both of whom are great researchers and have good experience of the Lyme road. 🙂

[nspiker]

Starla,

Just as you thought….those nasty lyme-buggars 😈 ! There’s a lyme support meeting this Saturday, if you’re interested. If you’re like me, it took a while until I felt better before before wanting to venture out.

I can understand your frustration with not being heard by Dr. F. and Dr. L. I honestly thought they were becoming much more lyme-friendly, after having numerous conversations on the subject. I know that for me, Clindamycin IV’s have been a significant component to my recovery, and for that I am very grateful to Dr. F. I also feel that their office is extremely efficient; I adore Audrey and feel that they do a good job looking after me. They provide a great service to patients who have no alternatives, and for many their treatment gives them their life back.

This is just another example of how we have to take our health into our own hands, and a warning to those who have plateaued or regressing, that lyme or other infectious pathogens should be considered. I’m glad you finally got your answer, and as we talked about before….lyme isn’t for sissy’s. It isn’t going to be an easy road at times, but you will get back to feeling good again….

nancy

[stwig]

Good morning all,
Thank you all for your encouragement and input. I had my follow up apt yesterday and am now adding Rifampin to my Axith, Plaquenil, and Diflucan. Getting out to the doctor yesterday really did a number on me, I can hardly move today.

As for all the replies about doctors F and L. Please don’t get me wrong, I know that they help a lot of people. I agree that their office staff is efficient and Audrey is the bees knees. Both F and L have a wonderful bedside manner that is caring and kind. But all that aside, I am not quite so quick to give them a free pass on their unwillingness to learn about and diagnose Lyme.

I know that for my career, if I relied on only what I learned in college, I would have been left in the dust. We all take extra evening classes, attend seminars, read articles and journals related to our work, get additional certificates, all in order to better ourselves and increase our knowledge base regarding our work. It’s not as if our college education is a book of knowledge and it gets slammed shut upon graduation, never to have any more chapters added. Nothing stays the same forever, not computers, not technology, and not medicine.

Why can’t they learn more? Especially given that Lyme so often presents itself as RA. Is it really too much to ask that they be willing to order some blood tests to look for additional pathogens.

Doing the right thing, and doing the easy thing are seldom the same.

Starla

[stwig]

Maz,
You had asked about my test results. The Fry lab performed a stain that enabled them to see the bartonella adherent to the RBC’s. There were 5 -10 organisms observed per field.

The Igenx IgM had positive bands at 31KDa and 41KDa
The IgG had a positive band at 41KDa and indeterminante bands at 31 and 39KDa

My titer for B. duncani, IgG was 80 (below 20 being negative)

Candida IgG was at 185U/ml (below 29 being negative) and IgM was 18U/ml (below 9 being negative)

I also had a barely elevated IgE for a couple molds that are common on leaves and soils. Probably from all the gardening I used to do.

Starla

[Maz]

@stwig wrote:

Maz,
You had asked about my test results. The Fry lab performed a stain that enabled them to see the bartonella adherent to the RBC’s. There were 5 -10 organisms observed per field.

Hi Starla,

Well, there’s that old saying, “If it walks and quacks like a duck, it’s probably a duck,” sort of came to mind with your results. I’m no expert, but in combo with your symptoms, it sure looks like a duck to me. 😉

Good job for getting IGeneX labs run….had you not, then Band 31 wouldn’t have shown up (it isn’t included on standard testing – removed when they were creating LymeRix vaccine)…and it’s pretty specific for Lyme. If this helps, I only showed up positive with one + on Bands 39 and 41 with IND on Bands 23-25 – that was with two clearly defined bulls-eye rashes. If it had been on IgM, the irony is that it would have been a CDC positive! As it was, it was only positive on IgG and by IGeneX criteria. Nevertheless, a bulls-eye = Lyme, no matter what any labs say – too bad my GP didn’t know this. Band 39 is so specific for Lyme it isn’t attributable to anything else and an IND merely means there wasn’t enough antibody on testing day to show up…but in this kind of scenario, you can’t be a “little bit” pregnant….and due to the waxing/waning nature of Lyme, these IgM and IgG values can apparently swing back and forth over time.

Looks like you have a few things you need to go after there, Starla. Hang in there…these LLMDs are pretty good at taking a measured, methodical combination therapy approach to target several things at once. It’s going to take time and patience and a lot of homework to ensure gut health (with that candida issue going on) and to help your body release the toxins from those dying organisms. You have some fellow Lyme warriors here to support you through these steps, so lean on us if you need to. It’s easy to get confused early on as every LLMD has their own approach and there are lots of supportive adjuncts to wade through…in a few months, though, you’ll be an old pro and sharing your experience with others…of that I have no doubts. 🙂

Thanks for sharing!

[Author]

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